Conceptual foundations of a palliative approach: a knowledge synthesis.

PubMed

Sawatzky, Richard; Porterfield, Pat; Lee, Joyce; Dixon, Duncan; Lounsbury, Kathleen; Pesut, Barbara; Roberts, Della; Tayler, Carolyn; Voth, James; Stajduhar, Kelli

2016-01-15

Much of what we understand about the design of healthcare systems to support care of the dying comes from our experiences with providing palliative care for dying cancer patients. It is increasingly recognized that in addition to cancer, high quality end of life care should be an integral part of care that is provided for those with other advancing chronic life-limiting conditions. A "palliative approach" has been articulated as one way of conceptualizing this care. However, there is a lack of conceptual clarity regarding the essential characteristics of a palliative approach to care. The goal of this research was to delineate the key characteristics of a palliative approach found in the empiric literature in order to establish conceptual clarity. We conducted a knowledge synthesis of empirical peer-reviewed literature. Search terms pertaining to "palliative care" and "chronic life-limiting conditions" were identified. A comprehensive database search of 11 research databases for the intersection of these terms yielded 190,204 documents. A subsequent computer-assisted approach using statistical predictive classification methods was used to identify relevant documents, resulting in a final yield of 91 studies. Narrative synthesis methods and thematic analysis were used to then identify and conceptualize key characteristics of a palliative approach. The following three overarching themes were conceptualized to delineate a palliative approach: (1) upstream orientation towards the needs of people who have life-limiting conditions and their families, (2) adaptation of palliative care knowledge and expertise, (3) operationalization of a palliative approach through integration into systems and models of care that do not specialize in palliative care. Our findings provide much needed conceptual clarity regarding a palliative approach. Such clarity is of fundamental importance for the development of healthcare systems that facilitate the integration of a palliative approach in the care of people who have chronic life-limiting conditions.

What Makes a Good Palliative Care Physician? A Qualitative Study about the Patient’s Expectations and Needs when Being Admitted to a Palliative Care Unit

PubMed Central

Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H

2016-01-01

Objective The aims of the study were to examine a) patients’ knowledge of palliative care, b) patients’ expectations and needs when being admitted to a palliative care unit, and c) patient’s concept of a good palliative care physician. Methods The study was based on a qualitative methodology, comprising 32 semistructured interviews with advanced cancer patients admitted to the palliative care unit of the Medical University of Vienna. Interviews were conducted with 20 patients during the first three days after admission to the unit and after one week, recorded digitally, and transcribed verbatim. Data were analyzed using NVivo 10 software, based on thematic analysis enhanced with grounded theory techniques. Results The results revealed four themes: (1) information about palliative care, (2) supportive care needs, (3) being treated in a palliative care unit, and (4) qualities required of palliative care physicians. The data showed that patients lack information about palliative care, that help in social concerns plays a central role in palliative care, and attentiveness as well as symptom management are important to patients. Patients desire a personal patient-physician relationship. The qualities of a good palliative care physician were honesty, the ability to listen, taking time, being experienced in their field, speaking the patient’s language, being human, and being gentle. Patients experienced relief when being treated in a palliative care unit, perceived their care as an interdisciplinary activity, and felt that their burdensome symptoms were being attended to with emotional care. Negative perceptions included the overtly intense treatment. Conclusions The results of the present study offer an insight into what patients expect from palliative care teams. Being aware of patient’s needs will enable medical teams to improve professional and individualized care. PMID:27389693

Patient safety in palliative care: A mixed-methods study of reports to a national database of serious incidents.

PubMed

Yardley, Iain; Yardley, Sarah; Williams, Huw; Carson-Stevens, Andrew; Donaldson, Liam J

2018-06-01

Patients receiving palliative care are vulnerable to patient safety incidents but little is known about the extent of harm caused or the origins of unsafe care in this population. To quantify and qualitatively analyse serious incident reports in order to understand the causes and impact of unsafe care in a population receiving palliative care. A mixed-methods approach was used. Following quantification of type of incidents and their location, a qualitative analysis using a modified framework method was used to interpret themes in reports to examine the underlying causes and the nature of resultant harms. Reports to a national database of 'serious incidents requiring investigation' involving patients receiving palliative care in the National Health Service (NHS) in England during the 12-year period, April 2002 to March 2014. A total of 475 reports were identified: 266 related to pressure ulcers, 91 to medication errors, 46 to falls, 21 to healthcare-associated infections (HCAIs), 18 were other instances of disturbed dying, 14 were allegations against health professions, 8 transfer incidents, 6 suicides and 5 other concerns. The frequency of report types differed according to the care setting. Underlying causes included lack of palliative care experience, under-resourcing and poor service coordination. Resultant harms included worsened symptoms, disrupted dying, serious injury and hastened death. Unsafe care presents a risk of significant harm to patients receiving palliative care. Improvements in the coordination of care delivery alongside wider availability of specialist palliative care support may reduce this risk.

The price of palliative care: toward a complete accounting of costs and benefits.

PubMed

Boni-Saenz, Alexander A; Dranove, David; Emanuel, Linda L; Lo Sasso, Anthony T

2005-02-01

In this article, currently accepted standards for cost-benefit analysis of health care interventions are outlined, and a framework to evaluate palliative care within these standards is provided. Recent publications on the economic implications of palliative care are reviewed, which are only the "tip of the iceberg" of the potential costs and benefits. Using this framework, the authors offer guidelines for performing comprehensive cost-benefit analyses of palliative care and conclude that many of the issues beneath the surface may be substantial and deserving of closer scrutiny. Methods for gathering relevant cost-benefit information are detailed, along with potential obstacles to implementation. This approach is applicable to palliative care in general, including palliative care for elders.

Palliative care for patients with Parkinson's disease: study protocol for a mixed methods study.

PubMed

Lennaerts, Herma; Groot, Marieke; Steppe, Maxime; van der Steen, Jenny T; Van den Brand, Marieke; van Amelsvoort, Dorian; Vissers, Kris; Munneke, Marten; Bloem, Bastiaan R

2017-11-25

Parkinson's disease (PD) is a chronic, progressive neurological disorder with many intractable consequences for patients and their family caregivers. Little is known about the possibilities that palliative care could offer to patients and their proxies. Guidelines strongly recommend palliative care to improve the quality of life and - if needed - the quality of dying. However, providing palliative care to persons with PD involves specific challenges. For example, a timely initiation of palliative interventions is difficult because due to the gradually progressive nature of PD, there is often no clear marker for the transition from curative towards palliative care. Furthermore, there is little evidence to indicate which palliative care interventions are effective. Here, we describe the contours of a study that aims to examine the experiences of patients, (bereaved) family caregivers and professionals, with the aim of improving our knowledge about palliative care needs in PD. We will perform a mixed methods study to evaluate the experiences of patients, (bereaved) family caregivers and palliative care professionals. In this study, we focus on Quality of Life, Quality of Care, perceived symptoms, caregiver burden and collaboration between professionals. In phase 1, we will retrospectively explore the views of bereaved family caregivers and professionals by conducting individual interviews and focus group interviews. In phase 2, 5-15 patients with PD and their family caregiver will be followed prospectively for 8-12 months. Data collection will involve semi-structured interviews and questionnaires at three consecutive contact moments. Qualitative data will be audio recorded, transcribed and analyzed using CAQDAS. If patients pass away during the study period, a bereavement interview will be done with the closest family caregiver. This study will offer a broad perspective on palliative care, and the results can be used to inform a palliative care protocol for patients with PD. By describing the experiences of patients, (bereaved) family caregivers and professionals with palliative care, this investigation will also establish an important ground for future intervention research.

Still Hoping for a Miracle: Parents' Experiences in Caring for their Child with Cancer Under Palliative Care

PubMed Central

Nafratilova, Mercy; Allenidekania, Allenidekania; Wanda, Dessie

2018-01-01

Context: Parents' despair and feelings of grief, as well as communication and coordination that is less than adequate between the parents and the palliative team, can affect the provision of a qualified palliative care plan for children and their families. Aims: This study aims to explore the parents' experience in caring for children with cancer under palliative care condition. Setting and Design: The research applied descriptive qualitative phenomenology design. Subjects and Methods: The study was conducted at Jakarta, Bogor, and Bekasi. Parents who caring their child with cancer under palliative care were in-depth interviewed with open-ended question. Data were then analyzed using the Colaizzi method. Results: This study resulted in two themes, still hoping for a miracle of God and always being surrendered while under palliative care. Parents still hope for a miracle of God to keep having their children during palliative care. The forms of surrendering exhibited by the parents in this study are believing in God, praying to God, saying thanks to God, relying on God, and preparing to face the deaths of their children. Conclusion: This study shows that during palliative care, parents cannot be separated from their relationship with God. Therefore, nurses are vital to the continuous assessment of parents' spiritual needs and to the facilitation of need fulfillment involving family and religious figures. PMID:29736112

Interprofessional team building in the palliative home care setting: Use of a conceptual framework to inform a pilot evaluation.

PubMed

Shaw, James; Kearney, Colleen; Glenns, Brenda; McKay, Sandra

2016-01-01

Home-based palliative care is increasingly dependent on interprofessional teams to deliver collaborative care that more adequately meets the needs of clients and families. The purpose of this pilot evaluation was to qualitatively explore the views of an interprofessional group of home care providers (occupational therapists, nurses, personal support work supervisors, community care coordinators, and a team coordinator) regarding a pilot project encouraging teamwork in interprofessional palliative home care services. We used qualitative methods, informed by an interprofessional conceptual framework, to analyse participants' accounts and provide recommendations regarding strategies for interprofessional team building in palliative home health care. Findings suggest that encouraging practitioners to share past experiences and foster common goals for palliative care are important elements of team building in interprofessional palliative care. Also, establishing a team leader who emphasises sharing power among team members and addressing the need for mutual emotional support may help to maximise interprofessional teamwork in palliative home care. These findings may be used to develop and test more comprehensive efforts to promote stronger interprofessional teamwork in palliative home health care delivery.

Development of Palliative Care in China: A Tale of Three Cities

PubMed Central

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo

2017-01-01

Abstract Background. China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Methods. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. Results. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient‐based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Conclusion. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. Implications for Practice. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. PMID:28739870

Palliative Cancer Care in Brazil: The Perspective of Nurses and Physicians.

PubMed

da Silva, Marcelle M; Büscher, Andreas; Moreira, Marléa Chagas

Palliative care is a recent development in health worldwide. In Brazil, a growing number of people with cancer require palliative care, emphasizing the need for investment in this aspect of health to increase the quality of life of patients during the dying process. As a developing country, Brazil lacks knowledge regarding the themes, material and financial resources, and policies of palliative care. The aim of this study was to provide insights into the Brazilian palliative care system from the perspectives of nurses and physicians. This was a descriptive and qualitative study, conducted at the palliative care unit of the Instituto Nacional de Câncer in Brazil. Twelve professionals, among them 8 nurses and 4 physicians, were interviewed in November 2013. The data were analyzed using the thematic analysis method. Ethical aspects were respected. The perspectives of the participants were characterized by 3 themes regarding the initial phase of development of palliative cancer care in Brazil: (1) controversies about when palliative cancer care should be initiated, (2) the World Health Organization recommendations and current practices, and (3) the need to invest in palliative cancer care education in Brazil. The development of palliative care is in the initial stages, and there is a possibility for growth due to recent advances. Knowledge about these challenges to palliative care could contribute to the development of strategies, such as the establishment of service organizations and networks, as well as educational and political investments for the advancement of palliative care.

Concordance in the Assessment of Effectiveness of Palliative Care between Patients and Palliative Care Nurses in Malaysia: A Study with the Palliative Care Outcome Scale

PubMed Central

Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean

2017-01-01

Context: The Palliative Care Outcome Scale (POS) is an easy-to-use assessment tool to evaluate the effectiveness of palliative care. There is no published literature on the use of POS as an assessment tool in Malaysia. Aim: To define the concordance in the assessment of quality of life between patients with advanced cancers and their palliative care nurses using a Malay version of the POS. Settings and Design: This study was conducted in the palliative care unit of the Hospital Tuanku Ja'afar Seremban, Malaysia, from February 2014 to June 2014. Subjects and Methods: We adapted and validated the English version of the 3-day recall POS into Malay and used it to define the concordance in the assessment of quality of life between patients and palliative care nurses. Forty patients with advanced stage cancers and forty palliative care nurses completed the Malay POS questionnaire. Statistical Analysis Used: The kappa statistical test was used to assess the agreement between patients and their palliative care nurses. Results: Slight to fair concordance was found in all items, except for one item (family anxiety) where there was no agreement. Conclusions: The Malay version of the POS was well accepted and reliable as an assessment tool for evaluation of the effectiveness of palliative care in Malaysia. Slight to fair concordance was shown between the patients and their palliative care nurses, suggesting the needs for more training of the nurses. PMID:28216862

The view of pulmonologists on palliative care for patients with COPD: a survey study

PubMed Central

Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y

2017-01-01

Introduction Early palliative care is not a common practice for patients with COPD. Important barriers are the identification of patients for palliative care and the organization of such care in this patient group. Objective Pulmonologists have a central role in providing good quality palliative care for patients with COPD. To guide future research and develop services, their view on palliative care for these patients was explored. Methods A survey study was performed by the members of the Netherlands Association of Physicians for Lung Diseases and Tuberculosis. Results The 256 respondents (31.8%) covered 85.9% of the hospital organizations in the Netherlands. Most pulmonologists (92.2%) indicated to distinguish a palliative phase in the COPD trajectory, but there was no consensus about the different criteria used for its identification. Aspects of palliative care in COPD considered important were advance care planning conversation (82%), communication between pulmonologist and general practitioner (77%), and identification of the palliative phase (75.8%), while the latter was considered the most important aspect for improvement (67.6%). Pulmonologists indicated to prefer organizing palliative care for hospitalized patients with COPD themselves (55.5%), while 30.9% indicated to prefer cooperation with a specialized palliative care team (SPCT). In the ambulatory setting, a multidisciplinary cooperation between pulmonologist, general practitioner, and a respiratory nurse specialist was preferred (71.1%). Conclusion To encourage pulmonologists to timely initiate palliative care in COPD, we recommend to conduct further research into more specific identification criteria. Furthermore, pulmonologists should improve their skills of palliative care, and the members of the SPCT should be better informed about the management of COPD to improve care during hospitalization. Communication between pulmonologist and general practitioner should be emphasized in training to improve palliative care in the ambulatory setting. PMID:28176900

The positioning of palliative care in acute care: A multiperspective qualitative study in the context of metastatic melanoma.

PubMed

Fox, Jennifer; Windsor, Carol; Connell, Shirley; Yates, Patsy

2016-06-01

The positioning and meaning of palliative care within the healthcare system lacks clarity which adds a level of complexity to the process of transition to palliative care. This study explores the transition to the palliative care process in the acute care context of metastatic melanoma. A theoretical framework drawing on interpretive and critical traditions informs this research. The pragmatism of symbolic interactionism and the critical theory of Habermas brought a broad orientation to the research. Integration of the theoretical framework and grounded-theory methods facilitated data generation and analysis of 29 interviews with patients, family carers, and healthcare professionals. The key analytical findings depict a scope of palliative care that was uncertain for users of the system and for those working within the system. Becoming "palliative" is not a defined event; nor is there unanimity around referral to a palliative care service. As such, ambiguity and tension contribute to the difficulties involved in negotiating the transition to palliative care. Our findings point to uncertainty around the scopes of practice in the transition to palliative care. The challenge in the transition process lies in achieving greater coherency of care within an increasingly specialized healthcare system. The findings may not only inform those within a metastatic melanoma context but may contribute more broadly to palliative practices within the acute care setting.

Redefining diagnosis-related groups (DRGs) for palliative care - a cross-sectional study in two German centres.

PubMed

Vogl, Matthias; Schildmann, Eva; Leidl, Reiner; Hodiamont, Farina; Kalies, Helen; Maier, Bernd Oliver; Schlemmer, Marcus; Roller, Susanne; Bausewein, Claudia

2018-04-05

Hospital costs and cost drivers in palliative care are poorly analysed. It remains unknown whether current German Diagnosis-Related Groups, mainly relying on main diagnosis or procedure, reproduce costs adequately. The aim of this study was therefore to analyse costs and reimbursement for inpatient palliative care and to identify relevant cost drivers. Two-center, standardised micro-costing approach with patient-level cost calculations and analysis of the reimbursement situation for patients receiving palliative care at two German hospitals (7/2012-12/2013). Data were analysed for the total group receiving hospital care covering, but not exclusively, palliative care (group A) and the subgroup receiving palliative care only (group B). Patient and care characteristics predictive of inpatient costs of palliative care were derived by generalised linear models and investigated by classification and regression tree analysis. Between 7/2012 and 12/2013, 2151 patients received care in the two hospitals including, but not exclusively, on the PCUs (group A). In 2013, 784 patients received care on the two PCUs only (group B). Mean total costs per case were € 7392 (SD 7897) (group A) and € 5763 (SD 3664) (group B), mean total reimbursement per case € 5155 (SD 6347) (group A) and € 4278 (SD 2194) (group B). For group A/B on the ward, 58%/67% of the overall costs and 48%/53%, 65%/82% and 64%/72% of costs for nursing, physicians and infrastructure were reimbursed, respectively. Main diagnosis did not significantly influence costs. However, duration of palliative care and total length of stay were (related to the cost calculation method) identified as significant cost drivers. Related to the cost calculation method, total length of stay and duration of palliative care were identified as significant cost drivers. In contrast, main diagnosis did not reflect costs. In addition, results show that reimbursement within the German Diagnosis-Related Groups system does not reproduce the costs adequately, but causes a financing gap for inpatient palliative care.

The palliative care knowledge questionnaire for PEACE: reliability and validity of an instrument to measure palliative care knowledge among physicians.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Morita, Tatsuya

2013-11-01

In Japan, a nationwide palliative care education program for primary palliative care (the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education: PEACE) was established in 2008. Effective delivery of such programs relies on adequate evaluations of program efficacy; however, such an instrument does not exist. This study aimed to develop and validate a measurement tool to quantify knowledge level of physicians about broader areas of palliative care, by which the effect of an education program could be measured. We conducted a cross-sectional, anonymous, self-administered questionnaire survey with a group of 801 conveniently sampled physicians in October 2010. To examine the test-retest reliability of items and domains, the questionnaire was reissued two weeks after the first survey was completed. This study used psychometric methods, including item response theory, intraclass correlation coefficients, and known-group validity. The response rate was 54% (n=434). We included 33 items across the following 9 domains: (1) philosophy of palliative care, (2) cancer pain, (3) side effects of opioids, (4) dyspnea, (5) nausea and vomiting, (6) psychological distress, (7) delirium, (8) communication regarding palliative care, and (9) community-based palliative care. For these items, the intraclass correlation was 0.84 and the Kuder-Richardson Formula 20 (KR-20) test of internal consistency was 0.87. There was a significant difference in the scores between palliative care specialists and other physicians. We successfully validated a newly developed palliative care knowledge questionnaire to evaluate PEACE effectiveness (PEACE-Q). The PEACE-Q could be useful for evaluating both palliative care knowledge among physicians and education programs in primary palliative care.

Treatment outcomes in palliative care: the TOPCare study. A mixed methods phase III randomised controlled trial to assess the effectiveness of a nurse-led palliative care intervention for HIV positive patients on antiretroviral therapy

PubMed Central

2012-01-01

Background Patients with HIV/AIDS on Antiretroviral Therapy (ART) suffer from physical, psychological and spiritual problems. Despite international policy explicitly stating that a multidimensional approach such as palliative care should be delivered throughout the disease trajectory and alongside treatment, the effectiveness of this approach has not been tested in ART-experienced populations. Methods/design This mixed methods study uses a Randomised Controlled Trial (RCT) to test the null hypothesis that receipt of palliative care in addition to standard HIV care does not affect pain compared to standard care alone. An additional qualitative component will explore the mechanism of action and participant experience. The sample size is designed to detect a statistically significant decrease in reported pain, determined by a two tailed test and a p value of ≤0.05. Recruited patients will be adults on ART for more than one month, who report significant pain or symptoms which have lasted for more than two weeks (as measured by the African Palliative Care Association (APCA) African Palliative Outcome Scale (POS)). The intervention under trial is palliative care delivered by an existing HIV facility nurse trained to a set standard. Following an initial pilot the study will be delivered in two African countries, using two parallel independent Phase III clinical RCTs. Qualitative data will be collected from semi structured interviews and documentation from clinical encounters, to explore the experience of receiving palliative care in this context. Discussion The data provided by this study will provide evidence to inform the improvement of outcomes for people living with HIV and on ART in Africa. ClinicalTrials.gov Identifier: NCT01608802 PMID:23130740

Patient perceptions of specialised hospital-based palliative home care: a qualitative study using a phenomenographical approach.

PubMed

Svensson, Gunilla; Wåhlin, Ingrid

2018-01-02

Specialised palliative care is given around the clock to palliative patients who have severe symptoms or special needs. The aim of this study was to describe patients' perceptions of what it is like to be cared for by a specialised palliative care team within hospital-based palliative home care (HPHC). A qualitative method with semi-structured interviews was used. Fourteen patients enrolled in HPHC at a unit for specialised palliative care linked to the hospital in the southeast of Sweden participated. The analysis was performed with a phenomenographical approach. Four description categories were identified: 'it is safe to receive care at home,' 'support and commitment', 'having access to a multiprofessional team', and 'how HPHC changes everyday life'. To be cared for by HPHC was perceived as safe, and the patients thought that having access to competent staff who supported them around the clock had improved their care and daily life. The need for specialised palliative care will likely grow with an ageing population and this form of care was perceived as functioning well.

Surgeons' Perceived Barriers to Palliative and End-of-Life Care: A Mixed Methods Study of a Surgical Society.

PubMed

Suwanabol, Pasithorn A; Reichstein, Ari C; Suzer-Gurtekin, Z Tuba; Forman, Jane; Silveira, Maria J; Mody, Lona; Morris, Arden M

2018-06-01

Nearly 20% of colorectal cancer (CRC) patients present with potentially incurable (Stage IV) disease, yet their physicians do not integrate cancer treatment with palliative care. Compared with patients treated by primary providers, surgical patients with terminal diseases are significantly less likely to receive palliative or end-of-life care. To describe surgeon perspectives on palliative and end-of-life care for patients with Stage IV CRCs. This is a convergent mixed methods study using a validated survey instrument from the Critical Care Peer Workgroup of the Robert Wood Johnson Foundation's Promoting Excellence in End-of-Life Care Project with additional qualitative questions. Participants were all current, nonretired members of the American Society of Colon and Rectal Surgeons. Surgeon-perceived barriers to palliative and end-of-life care for patients with Stage IV CRCs were identified. Among 131 Internet survey respondents (response rate 16.5%), 76.1% reported no formal education in palliative care, and specifically noted inadequate training in techniques to forgo life-sustaining measures (37.9%) and communication (42.7%). Over half (61.8%) of surgeons cited unrealistic expectations among patients and families as a barrier to care, which also limited discussion of palliation. At the system level, absence of documentation, appropriate processes, and culture hindered the initiation of palliative care. Thematic analysis of open-ended questions confirmed and extended these findings through the following major barriers to palliative and end-of-life care: (1) surgeon knowledge and training; (2) communication challenges; (3) difficulty with prognostication; (4) patient and family factors encompassing unrealistic expectations and discordant preferences; and (5) systemic issues including culture and lack of documentation and appropriate resources. Generalizability is limited by the small sample size inherent to Internet surveys, which may contribute to selection bias. Surgeons valued palliative and end-of-life care but reported multilevel barriers to its provision. These data will inform strategies to reduce these perceived barriers.

Is early integration of palliative care feasible and acceptable for advanced respiratory and gastrointestinal cancer patients? A phase 2 mixed-methods study.

PubMed

Costantini, Massimo; Apolone, Giovanni; Tanzi, Silvia; Falco, Francesco; Rondini, Ermanno; Guberti, Monica; Fanello, Silvia; Cavuto, Silvio; Savoldi, Luisa; Piro, Roberto; Mecugni, Daniela; Di Leo, Silvia

2018-01-01

There is evidence that early integration of palliative care improves quality of life, lowers spending and helps clarify preferences and goals for advanced cancer patients. Little is known about the feasibility and acceptability of early integration. Assessing feasibility of early integration of palliative care, and exploring concerns perceived and problems encountered by patients, relatives and oncologists. A phase 2 mixed-methods study ( ClinicalTrials.Gov :NCT02078700). Oncologists of two outpatient clinics offered a specialised palliative care intervention integrated with standard oncological care to all consecutive newly diagnosed metastatic respiratory/gastrointestinal cancer patients. We interviewed samples of patients, relatives and oncologists to explore strengths and weaknesses of the intervention. The intervention was proposed to 44/54 eligible patients (81.5%), 40 (90.1%) accepted, 38 (95.0%) attended the first palliative care visit. The intervention was completed for 32 patients (80.0%). It did not start for three (7.5%) and was interrupted for three patients who refused (7.5%). The Palliative Care Unit performed 274 visits in 38 patients (median per patient 4.5), and 24 family meetings with relatives of 16 patients. All patients and most relatives referred to the usefulness of the intervention, specifically for symptoms management, information and support to strategies for coping. Oncologists highlighted their difficulties in informing patients on palliative intervention, sharing information and coordinating patient's care with the palliative care team. Early integration of palliative care in oncological setting seems feasible and well accepted by patients, relatives and, to a lesser extent, oncologists. Some difficulties emerged concerning patient information and inter-professional communication.

A Pilot Trial of Early Specialty Palliative Care for Patients with Advanced Pancreatic Cancer: Challenges Encountered and Lessons Learned.

PubMed

Schenker, Yael; Bahary, Nathan; Claxton, Rene; Childers, Julie; Chu, Edward; Kavalieratos, Dio; King, Linda; Lembersky, Barry; Tiver, Greer; Arnold, Robert M

2018-01-01

Patients with advanced pancreatic cancer suffer from high morbidity and mortality. Specialty palliative care may improve quality of life. Assess the feasibility, acceptability, and perceived effectiveness of early specialty physician-led palliative care for patients with advanced pancreatic cancer and their caregivers. A mixed-methods pilot randomized controlled trial in which patient-caregiver pairs were randomized (2:1) to receive specialty palliative care, in addition to standard oncology care versus standard oncology care alone. At a National Cancer Institute-designated comprehensive cancer center in Western Pennsylvania, 30 patients with advanced pancreatic adenocarcinoma and their caregivers (N = 30), oncologists (N = 4), and palliative care physicians (N = 3) participated. Feasibility (enrollment, three-month outcome-assessment, and intervention completion rates), acceptability, and perceived effectiveness (process interviews with patients, caregivers, and physicians). Consent:approach rate was 49%, randomized:consent rate 55%, and three-month outcome assessment rate 75%. Two patients and three caregivers withdrew early. The three-month mortality rate was 13%. Patients attended a mean of 1.3 (standard deviation 1.1) palliative care visits during the three-month period. Positive experiences with palliative care included receiving emotional support and symptom management. Negative experiences included inconvenience, long travel times, spending too much time at the cancer center, and no perceived palliative care needs. Physicians suggested embedding palliative care within oncology clinics, tailoring services to patient needs, and facilitating face-to-face communication between oncologists and palliative physicians. A randomized trial of early palliative care for advanced pancreatic cancer did not achieve feasibility goals. Integrating palliative care within oncology clinics may increase acceptability and perceived effectiveness.

International recommendations for outpatient palliative care and prehospital palliative emergencies – a prospective questionnaire-based investigation

PubMed Central

2013-01-01

Background To determine the international recommendations and current practices for the treatment and prevention of palliative emergencies. The primary goal of the study was to gather information from experts on their nationally practised concepts. Methods One hundred and fifty self-report surveys were distributed by email to selected leading experts (palliative and emergency medical care) in Europe, North and South America, Africa, Asia, and Australia. An expert in this context was defined as an author of an article that was ranked by three reviewers as relevant to outpatient palliative and emergency medical . Results The total response rate was 61% (n = 92 experts). Survey responses were obtained from 35 different countries. The following standards in the treatment of palliative emergencies were recommended: (1) early integration of “Palliative Care Teams” (PCTs) and basic outpatient palliative care systems, (2) end-of-life discussions, (3) defined emergency medical documents, drug boxes, and “Do not attempt resuscitation” orders and (4) emergency medical training (physicians and paramedics). Conclusions This study detected structurally and nationally differences in outpatient palliative care regarding the treatment of palliative emergencies. Accordingly, these differences should be discussed and adapted to the respective specifications of individual single countries. A single established outpatient palliative emergency medical care concept may be the basis for an overall out-of-hospital palliative care system. PMID:23432905

Qualitative research in palliative care 1990-1999: a descriptive review.

PubMed

Froggatt, Katherine A; Field, David; Bailey, Chris; Krishnasamy, Meinir

2003-03-01

A collaborative, evaluative review of qualitative research in palliative care published between 1990 and 1999 has been conducted. Nearly 30,000 articles in 48 journals from specialist palliative care, oncology, death studies, medicine, nursing, gerontology, health and the social sciences were examined. From these journals, 138 articles (0.5%) reporting qualitative research with a focus on palliative care in the context of death, dying or bereavement were identified. These articles were reviewed using a proforma designed by the group. This article describes the review process, and the following findings: the distribution of different forms of qualitative research in palliative care; the location of such papers; the focus of the research; and the research methodology and methods adopted.

Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study

PubMed Central

Walshe, Catherine; Todd, Chris; Caress, Ann-Louise; Chew-Graham, Carolyn

2008-01-01

Background Policies emphasise the importance of collaborative working in community palliative care. Collaborations are generally formed through formal and informal referral processes, but little is known about what influences professionals' decisions to refer to such services. Aim To explore the influences on referrals within general and specialist community palliative care services. Design of study Qualitative, multiple-case study. Setting Three primary care trusts in the north-west of England. Method Multiple data collection methods were employed, including documentary analysis, observation of referral team meetings and interviews. This paper primarily reports data from interviews with 47 health professionals, including GPs, district nurses, and specialist palliative care professionals. Results Judgements — positive and negative — about aspects of fellow professionals' performances appeared to influence referral decisions and ongoing collaboration and care. Attributes upon which these judgements were based included professional responsiveness and communication, respect, working and workload management practices, perceived expertise, and notions of elite practice. The effects of such judgements on referral and healthcare practices were altered by professional ‘game playing’ to achieve professionals' desired outcomes. Conclusion Palliative care policies and protocols need to take account of these complex and subtle influences on referrals and collaboration. In particular, teamwork and partnership are encouraged within palliative care work, but critical judgements indicate that such partnerships may be difficult or fragile. It is likely that such judgemental attitudes and practices affect many aspects of primary care, not just palliative care. PMID:18494176

Community-Based Palliative Care and Advance Care Planning Documentation: Evidence from a Multispecialty Group.

PubMed

Tai-Seale, Ming; Yang, Yan; Dillon, Ellis; Tapper, Sharon; Lai, Steve; Yu, Peter; Allore, Heather; Ritchie, Christine

2018-02-01

With the growing public demand for access to critical health data across care settings, it is essential that advance care planning (ACP) information be included in the electronic health record (EHR) so that multiple clinicians can access it and understand individuals' preferences for end-of-life care. Community-based palliative care programs often incorporate ACP services. This study examined whether a community-based palliative care program is associated with digitally extractable ACP documentation in the EHR. Observational study using propensity score-weighted generalized estimation equations to examine patterns of digitally extractable ACP documentation. Palo Alto Medical Foundation (PAMF), a multispecialty ambulatory healthcare system in northern California. Individuals aged 65 and older with serious illnesses between January 1, 2013, and December 31, 2014 (N = 3,444). Community-based palliative care program in PAMF. Digitally extractable ACP in EHR. We found that only 14% (n = 483) of individuals with serious illnesses had digitally extractable ACP in electronic health records. Of the 6% of individuals receiving palliative care, 65% had ACP, versus 11% of those not receiving palliative care. Study results showed a strong positive association between palliative care and ACP. Only a small percentage of individuals with serious illnesses had ACP documentation in the EHR. Individuals with serious illnesses infrequently used palliative care delivered by board-certified palliative care specialists. Palliative care service use was associated with higher rates of ACP after controlling for organizational and individual characteristics using a propensity score weighting method. Scalable interventions targeted at non-palliative care clinicians for universal access to ACP are needed. © 2017, Copyright the Authors Journal compilation © 2017, The American Geriatrics Society.

Palliative Care Research--A Systematic Review of foci, designs and methods of research conducted in Sweden between 2007 and 2012.

PubMed

Henoch, Ingela; Carlander, Ida; Holm, Maja; James, Inger; Sarenmalm, Elisabeth Kenne; Hagelin, Carina Lundh; Lind, Susanne; Sandgren, Anna; Öhlén, Joakim

2016-03-01

In 2007, a literature review was undertaken of palliative care research from Sweden during the 1970s-2006, paving the way for a follow-up study to explore the recent developments. The aim was to systematically examine palliative care research from Sweden between 2007 and 2012, with special attention to methods, designs and research foci. A literature review was undertaken. The databases Academic search elite, Age line, Ahmed, Cinahl, PsychInfo, PubMed, Scopus, Soc abstracts, Web of science and Libris were reviewed for Swedish palliative care research studies published from 2007 to 2012, applying the search criteria 'palliative care OR palliative medicine OR end-of-life care OR terminal care OR hospice care OR dying OR death'. A total of 263 papers met the inclusion criteria, indicating an increased volume of research compared to the 133 articles identified in the previous review. Common study foci were symptom assessment and management, experiences of illness and care planning. Targeting non-cancer-specific populations and utilisation of population-based register studies were identified as new features. There was continued domination of cross-sectional, qualitative and mono-disciplinary studies, not including ethnic minority groups, nonverbally communicable people or children <18 years of age. The trend is that Swedish palliative care research has expanded in volume from 2007 to 2012 compared to during the 1970s to 2006, with increasing participation of non-cancer-specific populations. A domination of qualitative approaches and small, cross-sectional studies with few interventions is still characteristic. Still more strategies are needed to expand the knowledge development of palliative care to respond to demographical, epidemiological, therapeutic and healthcare structure changes. © 2015 Nordic College of Caring Science.

How is palliative care understood in the context of dementia? Results from a massive open online course

PubMed Central

McInerney, Fran; Doherty, Kathleen; Bindoff, Aidan; Robinson, Andrew; Vickers, James

2017-01-01

Background: A palliative approach to the care of people with dementia has been advocated, albeit from an emergent evidence base. The person-centred philosophy of palliative care resonates with the often lengthy trajectory and heavy symptom burden of this terminal condition. Aim: To explore participants’ understanding of the concept of palliative care in the context of dementia. The participant population took an online course in dementia. Design: The participant population took a massive open online course on ‘Understanding Dementia’ and posted answers to the question: ‘palliative care means …’ We extracted these postings and analysed them via the dual methods of topic modelling analysis and thematic analysis. Setting/participants: A total of 1330 participants from three recent iterations of the Understanding Dementia Massive Open Online Course consented to their posts being used. Participants included those caring formally or informally for someone living with dementia as well as those with a general interest in dementia Results: Participants were found to have a general awareness of palliative care, but saw it primarily as terminal care, focused around the event of death and specialist in nature. Comfort was equated with pain management only. Respondents rarely overtly linked palliative care to dementia. Conclusions: A general lack of palliative care literacy, particularly with respect to dementia, was demonstrated by participants. Implications for dementia care consumers seeking palliative care and support include recognition of the likely lack of awareness of the relevance of palliative care to dementia. Future research could access online participants more directly about their understandings/experiences of the relationship between palliative care and dementia. PMID:29235386

Increased Access to Palliative Care and Hospice Services: Opportunities to Improve Value in Health Care

PubMed Central

Meier, Diane E

2011-01-01

Context: A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. Methods: This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Findings: Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Conclusions: Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. PMID:21933272

Implementation of a palliative care team in a pediatric hospital.

PubMed

Hubble, Rosemary A; Ward-Smith, Peggy; Christenson, Kathy; Hutto, C J; Korphage, Rebecca M; Hubble, Christopher L

2009-01-01

Recommendations for best practice from the American Academy of Pediatrics include the availability of palliative care for children with life-threatening or life-limiting health care conditions. The uniqueness of the both the pediatric population and a pediatric health care setting requires changing the culture that previously has provided only curative or hospice care to these individuals. Methods to provide palliative care alongside of treatment and coordination of these efforts must be multidisciplinary and include family members.

Combined qualitative and quantitative research designs.

PubMed

Seymour, Jane

2012-12-01

Mixed methods research designs have been recognized as important in addressing complexity and are recommended particularly in the development and evaluation of complex interventions. This article reports a review of studies in palliative care published between 2010 and March 2012 that combine qualitative and quantitative approaches. A synthesis of approaches to mixed methods research taken in 28 examples of published research studies of relevance to palliative and supportive care is provided, using a typology based on a classic categorization put forward in 1992. Mixed-method studies are becoming more frequently employed in palliative care research and resonate with the complexity of the palliative care endeavour. Undertaking mixed methods research requires a sophisticated understanding of the research process and recognition of some of the underlying complexities encountered when working with different traditions and perspectives on issues of: sampling, validity, reliability and rigour, different sources of data and different data collection and analysis techniques.

How Family Physicians Address Diagnosis and Management of Depression in Palliative Care Patients

PubMed Central

Warmenhoven, Franca; van Rijswijk, Eric; van Hoogstraten, Elise; van Spaendonck, Karel; Lucassen, Peter; Prins, Judith; Vissers, Kris; van Weel, Chris

2012-01-01

PURPOSE Depression is highly prevalent in palliative care patients. In clinical practice, there is concern about both insufficient and excessive diagnosis and treatment of depression. In the Netherlands, family physicians have a central role in delivering palliative care. We explored variation in family physicians’ opinions regarding the recognition, diagnosis, and management of depression in palliative care patients. METHODS We conducted a focus group study in a sample of family physicians with varied practice locations and varying expertise in palliative care. Transcripts were analyzed independently by 2 researchers using constant comparative analysis in ATLAS.ti. RESULTS In 4 focus group discussions with 22 family physicians, the physicians described the diagnostic and therapeutic process for depression in palliative care patients as a continuous and overlapping process. Differentiating between normal and abnormal sadness was viewed as challenging. The physicians did not strictly apply criteria of depressive disorder but rather relied on their clinical judgment and strongly considered patients’ context and background factors. They indicated that managing depression in palliative care patients is mainly supportive and nonspecific. Antidepressant drugs were seldom prescribed. The physicians described difficulties in diagnosing and treating depression in palliative care, and gave suggestions to improve management of depression in palliative care patients in primary care. CONCLUSIONS Family physicians perceive the diagnosis and management of depression in palliative care patients as challenging. They rely on open communication and a long-standing physician-patient relationship in which the patient’s context is of great importance. This approach fits with the patient-centered care that is promoted in primary care. PMID:22778121

Oncologists’ Perspectives on Concurrent Palliative Care in an NCI-designated Comprehensive Cancer Center

PubMed Central

Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim

2013-01-01

Purpose To understand oncology clinicians’ perspectives about the care of advanced cancer patients following the completion of the ENABLE II (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial (RCT) of a concurrent oncology palliative care model. Methods Qualitative interview study of 35 oncology clinicians about their approach to patients with advanced cancer and the effect of the ENABLE II RCT. Results Oncologists believed that integrating palliative care at the time of an advanced cancer diagnosis enhanced patient care and complemented their practice. Self-assessment of their practice with advanced cancer patients comprised four themes: 1) treating the whole patient, 2) focusing on quality versus quantity of life, 3) “some patients just want to fight”, and 4) helping with transitions; timing is everything. Five themes comprised oncologists’ views on the complementary role of palliative care: 1) “refer early and often”, 2) referral challenges: “Palliative” equals hospice; “Heme patients are different”, 3) palliative care as consultants or co-managers, 4) palliative care “shares the load”, and 5) ENABLE II facilitated palliative care integration. Conclusions Oncologists described the RCT as holistic and complementary, and as a significant factor in adopting concurrent care as a standard of care. PMID:23040412

Can Palliative Home Care Reduce 30-Day Readmissions? Results of a Propensity Score Matched Cohort Study

PubMed Central

Ranganathan, Anjana; Dougherty, Meredith; Waite, David

2013-01-01

Abstract Objective This study examined the impact of palliative home nursing care on rates of hospital 30-day readmissions. Methods The electronic health record based retrospective cohort study was performed within home care and palliative home care programs. Participants were home care patients discharged from one of three urban teaching hospitals. Outcome measures were propensity score matched rates of hospital readmissions within 30 days of hospital discharge. Results Of 406 palliative home care patients, matches were identified for 392 (96%). Of 15,709 home care patients, 890 were used at least once as a match for palliative care patients, for a total final sample of 1282. Using the matched sample we calculated the average treatment effect for treated patients. In this sample, palliative care patients had a 30-day readmission probability of 9.1% compared to a probability of 17.4% in the home care group (mean ATT: 8.3%; 95% confidence interval [CI] 8.0%–8.6%). This effect persisted after adjustment for visit frequency. Conclusions Palliative home care may offer benefits to health systems by allowing patients to remain at home and thereby avoiding 30-day rehospitalizations. PMID:24007348

Potential palliative care quality indicators in heart disease patients: A review of the literature.

PubMed

Mizuno, Atsushi; Miyashita, Mitsunori; Hayashi, Akitoshi; Kawai, Fujimi; Niwa, Koichiro; Utsunomiya, Akemi; Kohsaka, Shun; Kohno, Takashi; Yamamoto, Takeshi; Takayama, Morimasa; Anzai, Toshihisa

2017-10-01

In spite of the increasing interest in palliative care for heart disease, data on the detailed methods of palliative care and its efficacy specifically in heart disease are still lacking. A structured PubMed literature review revealed no quality indicators of palliative care in heart disease. Therefore, we performed a narrative overview of the potential quality indicators in heart disease by reviewing previous literature concerning quality indicators in cancer patients. We summarize seven potential categories of quality indicators in heart disease: (1) presence and availability of a palliative care unit, palliative care team, and outpatient palliative care; (2) human resources such as number of skilled staff; (3) infrastructure; (4) presence and frequency of documentation or family survey; (5) patient-reported outcome measure (PROM) data and disease-specific patient quality of life such as The Kansas City Cardiomyopathy Questionnaire (KCCQ); (6) questionnaires and interviews about the quality of palliative care after death, including bereaved family surveys; and (7) admission-related outcomes such as place of death and intensive care unit length of stay. Although detailed measurements of palliative care quality have not been validated in heart disease, many indicators developed in cancer patients might also be applicable to heart disease. This new categorization might be useful to determine quality indicators in heart disease patients. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

A conceptual model: Redesigning how we provide palliative care for patients with chronic obstructive pulmonary disease.

PubMed

Philip, Jennifer; Crawford, Gregory; Brand, Caroline; Gold, Michelle; Miller, Belinda; Hudson, Peter; Smallwood, Natasha; Lau, Rosalind; Sundararajan, Vijaya

2017-05-31

Despite significant needs, patients with chronic obstructive pulmonary disease (COPD) make limited use of palliative care, in part because the current models of palliative care do not address their key concerns. Our aim was to develop a tailored model of palliative care for patients with COPD and their family caregivers. Based on information gathered within a program of studies (qualitative research exploring experiences, a cohort study examining service use), an expert advisory committee evaluated and integrated data, developed responses, formulated principles to inform care, and made recommendations for practice. The informing studies were conducted in two Australian states: Victoria and South Australia. A series of principles underpinning the model were developed, including that it must be: (1) focused on patient and caregiver; (2) equitable, enabling access to components of palliative care for a group with significant needs; (3) accessible; and (4) less resource-intensive than expansion of usual palliative care service delivery. The recommended conceptual model was to have the following features: (a) entry to palliative care occurs routinely triggered by clinical transitions in care; (b) care is embedded in routine ambulatory respiratory care, ensuring that it is regarded as "usual" care by patients and clinicians alike; (c) the tasks include screening for physical and psychological symptoms, social and community support, provision of information, and discussions around goals and preferences for care; and (d) transition to usual palliative care services is facilitated as the patient nears death. Our proposed innovative and conceptual model for provision of palliative care requires future formal testing using rigorous mixed-methods approaches to determine if theoretical propositions translate into effectiveness, feasibility, and benefits (including economic benefits). There is reason to consider adaptation of the model for the palliative care of patients with other nonmalignant conditions.

Ideology and Palliative Care: Moral Hazards at the Bedside.

PubMed

Rhodes, Rosamond; Strain, James J

2018-01-01

Palliative care has had a long-standing commitment to teaching medical students and other medical professionals about pain management, communication, supporting patients in their decisions, and providing compassionate end-of-life care. Palliative care programs also have a critical role in helping patients understand medical conditions, and in supporting them in dealing with pain, fear of dying, and the experiences of the terminal phase of their lives. We applaud their efforts to provide that critical training and fully support their continued important work in meeting the needs of patients and families. Although we appreciate the contributions of palliative care services, we have noted a problem involving some palliative care professionals' attitudes, methods of decisionmaking, and use of language. In this article we explain these problems by discussing two cases that we encountered.

Palliative Care Service Use in Four European Countries: A Cross-National Retrospective Study via Representative Networks of General Practitioners

PubMed Central

Pivodic, Lara; Pardon, Koen; Van den Block, Lieve; Van Casteren, Viviane; Miccinesi, Guido; Donker, Gé A.; Alonso, Tomás Vega; Alonso, José Lozano; Aprile, Pierangelo Lora; Onwuteaka-Philipsen, Bregje D.; Deliens, Luc

2013-01-01

Background Due to a rising number of deaths from cancer and other chronic diseases a growing number of people experience complex symptoms and require palliative care towards the end of life. However, population-based data on the number of people receiving palliative care in Europe are scarce. The objective of this study is to examine, in four European countries, the number of people receiving palliative care in the last three months of life and the factors associated with receiving palliative care. Methods Cross-national retrospective study. Over two years (2009–2010), GPs belonging to representative epidemiological surveillance networks in Belgium, the Netherlands, Italy, and Spain registered weekly all deaths of patients (≥18 years) in their practices and the care they received in the last three months of life using a standardized form. Sudden deaths were excluded. Results We studied 4,466 deaths. GPs perceived to have delivered palliative care to 50% of patients in Belgium, 55% in Italy, 62% in the Netherlands, and 65% in Spain (p<.001). Palliative care specialists attended to 29% of patients in the Netherlands, 39% in Italy, 45% in Spain, and 47% in Belgium (p<.001). Specialist palliative care lasted a median (inter-quartile range) of 15 (23) days in Belgium to 30 (70) days in Italy (p<.001). Cancer patients were more likely than non-cancer patients to receive palliative care in all countries as were younger patients in Italy and Spain with regard to specialist palliative care. Conclusions Although palliative care is established in the countries studied, there are considerable differences in its provision. Two potentially underserved groups emerge non-cancer patients in all countries and older people in Italy and Spain. Future research should examine how differences in palliative care use relate to both patient characteristics and existing national health care policies. PMID:24386381

Comparison of the Educational Needs of Neonatologists and Neonatal Nurses Regarding Palliative Care in Taiwan.

PubMed

Lee, Min-Chun; Chen, Yong-Chuan; Chen, Chao-Huei; Lu, Frank Leigh; Hsiao, Chien-Chou; Peng, Niang-Huei

2016-04-01

Education and training are very critical to development of high-quality neonatal palliative care. However, little investigation has been done into Taiwanese neonatal clinicians' educational needs regarding neonatal palliative care. The purposes of this study were to characterize and identify neonatal clinicians' educational needs regarding neonatal palliative care. A cross-sectional descriptive surveyed method via a self administered questionnaire was used in this research. Thirty neonatologists were recruited by a convenience sampling and 30 nurses were recruited by a randomized sampling. Out of sixty neonatal clinicians' survey, few had received the education in neonatal palliative care. Most reported minimal training in, experience with, and knowledge of neonatal palliative care. For neonatologists, two of twelve most strongly-felt educational needs were "discussing palliative care and ethical decision-making with parents" (70%) and "informing parents the poor progress in neonates" (63.3%). In contrast, neonatal nurses wanted more training regarding pain control (50%). Communication skills, including the discussing poor prognosis, bad news, and code status and talking with neonates about end-of-life care, were the educational need most commonly felt by both neonatologists and nurses. Survey data from neonatologists and neonatal nurses in Taiwan indicate a need for further training on a range of neonatal palliative care competencies. © The Author(s) 2014.

Palliative care and the arts: vehicles to introduce medical students to patient-centred decision-making and the art of caring.

PubMed

Centeno, Carlos; Robinson, Carole; Noguera-Tejedor, Antonio; Arantzamendi, María; Echarri, Fernando; Pereira, José

2017-12-16

Medical Schools are challenged to improve palliative care education and to find ways to introduce and nurture attitudes and behaviours such as empathy, patient-centred care and wholistic care. This paper describes the curriculum and evaluation results of a unique course centred on palliative care decision-making but aimed at introducing these other important competencies as well. The 20 h-long optional course, presented in an art museum, combined different learning methods, including reflections on art, case studies, didactic sessions, personal experiences of faculty, reflective trigger videos and group discussions. A mixed methods approach was used to evaluate the course, including a) a post-course reflective exercise; b) a standardized evaluation form used by the University for all courses; and c) a focus group. Twenty students (2nd to 6th years) participated. The course was rated highly by the students. Their understanding of palliative care changed and misconceptions were dispelled. They came to appreciate the multifaceted nature of decision-making in the palliative care setting and the need to individualize care plans. Moreover, the course resulted in a re-conceptualization of relationships with patients and families, as well as their role as future physicians. Palliative care decision-making therefore, augmented by the visual arts, can serve as a vehicle to address several competencies, including the introduction of competencies related to being patient-centred and empathic.

Introducing PALETTE: an iterative method for conducting a literature search for a review in palliative care.

PubMed

Zwakman, Marieke; Verberne, Lisa M; Kars, Marijke C; Hooft, Lotty; van Delden, Johannes J M; Spijker, René

2018-06-02

In the rapidly developing specialty of palliative care, literature reviews have become increasingly important to inform and improve the field. When applying widely used methods for literature reviews developed for intervention studies onto palliative care, challenges are encountered such as the heterogeneity of palliative care in practice (wide range of domains in patient characteristics, stages of illness and stakeholders), the explorative character of review questions, and the poorly defined keywords and concepts. To overcome the challenges and to provide guidance for researchers to conduct a literature search for a review in palliative care, Palliative cAre Literature rEview iTeraTive mEthod (PALLETE), a pragmatic framework, was developed. We assessed PALETTE with a detailed description. PALETTE consists of four phases; developing the review question, building the search strategy, validating the search strategy and performing the search. The framework incorporates different information retrieval techniques: contacting experts, pearl growing, citation tracking and Boolean searching in a transparent way to maximize the retrieval of literature relevant to the topic of interest. The different components and techniques are repeated until no new articles are qualified for inclusion. The phases within PALETTE are interconnected by a recurrent process of validation on 'golden bullets' (articles that undoubtedly should be part of the review), citation tracking and concept terminology reflecting the review question. To give insight in the value of PALETTE, we compared PALETTE with the recommended search method for reviews of intervention studies. By using PALETTE on two palliative care literature reviews, we were able to improve our review questions and search strategies. Moreover, in comparison with the recommended search for intervention reviews, the number of articles needed to be screened was decreased whereas more relevant articles were retrieved. Overall, PALETTE helped us in gaining a thorough understanding of the topic of interest and made us confident that the included studies comprehensively represented the topic. PALETTE is a coherent and transparent pragmatic framework to overcome the challenges of performing a literature review in palliative care. The method enables researchers to improve question development and to maximise both sensitivity and precision in their search process.

“It’s like heart failure. It’s chronic…and it will kill you”: A qualitative analysis of burnout among hospice and palliative care clinicians

PubMed Central

Kavalieratos, Dio; Siconolfi, Daniel E.; Steinhauser, Karen E.; Bull, Janet; Arnold, Robert M.; Swetz, Keith M.; Kamal, Arif H.

2017-01-01

Context Although prior surveys have identified rates of self-reported burnout among palliative care clinicians as high as 62%, limited data exist to elucidate the causes, ameliorators, and effects of this phenomenon. Objectives We explored burnout among palliative care clinicians, specifically their experiences with burnout, their perceived sources of burnout, and potential individual, interpersonal, organizational, and policy-level solutions to address burnout. Methods During the 2014 AAHPM/HPNA Annual Assembly, we conducted 3 focus groups to examine: personal narratives of burnout; how burnout differs within hospice and palliative care; and, strategies to mitigate burnout. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative analytic technique. Results We interviewed 20 palliative care clinicians (14 physicians, 4 advanced practice providers, 2 social workers). Common sources of burnout included: increasing workload, tensions between non-specialists and palliative care specialists, and regulatory issues. We heard grave concerns about the stability of the palliative care workforce, and concerns of providing, high-quality palliative care in light of a distressed, overburdened discipline. Participants proposed anti-burnout solutions including: promoting the provision of generalist palliative care, frequent rotations on-and-off service, and organizational support for self-care. We observed variability in sources of burnout between clinician type and by practice setting, such as role monotony among full-time clinicians. Conclusion Our results reinforce and expand upon the severity and potential ramifications of burnout on the palliative care workforce. Future research is needed to confirm our findings and to investigate interventions to address or prevent burnout. PMID:28063867

Barriers to Optimal Palliative Care of Lung Transplant Candidates

PubMed Central

Colman, Rebecca E.; Curtis, J. Randall; Nelson, Judith E.; Efferen, Linda; Hadjiliadis, Denis; Levine, Deborah J.; Meyer, Keith C.; Padilla, Maria; Strek, Mary; Varkey, Basil

2013-01-01

Background: The provision of effective palliative care is of great importance to patients awaiting lung transplantation. Although the prospect of lung transplantation provides hope to patients and their families, these patients are usually very symptomatic from their underlying disease. Methods: An e-mail questionnaire was sent to members of the American College of Chest Physicians’ Transplant NetWork and the Pulmonary Council of the International Society for Heart and Lung Transplantation (ISHLT). The survey included questions about barriers to providing palliative care, the availability of palliative care services, and recommended strategies to improve palliative care for lung transplant candidates. Results: The 158 respondents represented approximately 65% of transplant programs in the ISHLT registry. Respondents were in practice a mean of 11.3 (± 9) years, 70% were pulmonologists, 17% were surgeons, and 13% were other care providers. Barriers were classified into domains including patient factors, family factors, physician factors, and institutional/transplant program/lung allocation system factors. Significant patient/family barriers included unrealistic patient/family expectations about survival, unwillingness to plan end-of-life care, concerns about abandonment or inappropriate care after enrollment in a palliative care program, and family disagreements about care goals. For institutional/program/allocation system barriers, only the requirement for weight loss or gain to meet program-specific BMI requirements was identified. Significant physician barriers included competing time demands and the seemingly contradictory goals of transplant vs palliative care. Strategies recommended to improve palliative care included routine advance care planning for patients awaiting transplantation, access to palliative care specialists, training of transplant physicians in symptom management, and regular meetings among transplant physicians, nurses, patients, and families. Conclusions: Physicians providing care to lung transplant candidates reported considerable barriers to the delivery and acceptance of palliative care and identified specific strategies to improve palliative care for lung transplant candidates. PMID:22922517

A survey of palliative medicine education in Japan's undergraduate medical curriculum.

PubMed

Nakamura, Yoichi; Takamiya, Yusuke; Saito, Mari; Kuroko, Koichi; Shiratsuchi, Tatsuko; Oshima, Kenzaburo; Ito, Yuko; Miyake, Satoshi

2017-06-07

This study aimed to examine the status of undergraduate palliative care education among Japanese medical students using data from a survey conducted in 2015. A questionnaire was originally developed, and the survey forms were sent to universities. The study's objectives, methods, disclosure of results, and anonymity were explained to participating universities in writing. Responses returned by the universities were considered to indicate consent to participate. Descriptive statistical methodology was employed. The response rate was 82.5% (66 of 80 medical faculties and colleges). Palliative care lectures were implemented in 98.5% of the institutions. Regarding lecture titles, "palliative medicine," "palliative care," and "terminal care" accounted for 42.4, 30.3, and 9.1% of the lectures, respectively. Teachers from the Department of Anesthesia, Palliative Care, and Psychiatry administered 51.5, 47.0, and 28.8% of lectures, respectively. Subjects of lectures included general palliative care (81.8%), pain management (87.9%), and symptom management (63.6%). Clinical clerkship on palliative care was a compulsory and non-compulsory course in 43.9 and 25.8% of the schools, respectively; 30.3% had no clinical clerkship curriculum. Undergraduate palliative care education is implemented in many Japanese universities. Clinical clerkship combined with participation in actual medical practice should be further improved by establishing a medical education certification system in compliance with the international standards.

A Systematic Review of Palliative Care Intervention Outcomes and Outcome Measures in Low-Resource Countries.

PubMed

Potts, Maryellen; Cartmell, Kathleen B; Nemeth, Lynne; Bhattacharjee, Gautam; Qanungo, Suparna

2018-05-01

To meet the growing need for palliative care in low-resource countries, palliative care programs should be evidence based and contextually appropriate. This study was conducted to synthesize the current evidence to guide future programmatic and research efforts. This systematic review evaluated palliative care outcome measures, outcomes, and interventions in low-resource countries. After title searches, abstracts and full-text articles were screened for inclusion. Data were extracted to report on intervention models, outcome measures used, and intervention outcomes. Eighteen papers were reviewed, reporting on interventions conducted across nine low-resource countries. These interventions evaluated home-based palliative care models; a community-managed model; palliative care integrated with hospitals, hospices, or HIV clinics; and models focused on patients' self-management. Three studies were randomized controlled trials. Other studies used nonrandomized trials, cohort studies, mixed methods, pre-post test evaluation, cost-accounting evaluation, and cross-sectional surveys. Thirteen studies measured physical outcomes, 10 using multidimensional instruments. Nine studies measured psychological outcomes, eight using multidimensional instruments. Nine studies measured social outcomes, seven using multidimensional instruments. Nine studies measured outcomes across multiple domains. Across outcomes evaluated, results were reported in the direction of benefit associated with palliative care interventions. Many palliative care intervention models exist to serve patients in low-resource countries. Yet, limited high-quality evidence from low-resource countries is available to document intervention outcomes. Rigorous experimental studies and greater measurement of multidimensional aspects of palliative care are needed to advance the science of palliative care in low-resource settings. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Development of a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan: a modified Delphi method.

PubMed

Kizawa, Yoshiyuki; Tsuneto, Satoru; Tamba, Kaichiro; Takamiya, Yusuke; Morita, Tatsuya; Bito, Seiji; Otaki, Junji

2012-07-01

There is currently no consensus syllabus of palliative medicine for undergraduate medical education in Japan, although the Cancer Control Act proposed in 2007 covers the dissemination of palliative care. To develop a nationwide consensus syllabus of palliative medicine for undergraduate medical education in Japan using a modified Delphi method. We adopted the following three-step method: (1) a workshop to produce the draft syllabus; (2) a survey-based provisional syllabus; (3) Delphi rounds and a panel meeting (modified Delphi method) to produce the working syllabus. Educators in charge of palliative medicine from 63% of the medical schools in Japan collaborated to develop a survey-based provisional syllabus before the Delphi rounds. A panel of 32 people was then formed for the modified Delphi rounds comprising 28 educators and experts in palliative medicine, one cancer survivor, one bereaved family member, and two medical students. The final consensus syllabus consists of 115 learning objectives across seven sections as follows: basic principles; disease process and comprehensive assessment; symptom management; psychosocial care; cultural, religious, and spiritual issues; ethical issues; and legal frameworks. Learning objectives were categorized as essential or desirable (essential: 66; desirable: 49). A consensus syllabus of palliative medicine for undergraduate medical education was developed using a clear and innovative methodology. The final consensus syllabus will be made available for further dissemination of palliative care education throughout the country.

Measuring healthcare integration: Operationalization of a framework for a systems evaluation of palliative care structures, processes, and outcomes.

PubMed

Bainbridge, Daryl; Brazil, Kevin; Ploeg, Jenny; Krueger, Paul; Taniguchi, Alan

2016-06-01

Healthcare integration is a priority in many countries, yet there remains little direction on how to systematically evaluate this construct to inform further development. The examination of community-based palliative care networks provides an ideal opportunity for the advancement of integration measures, in consideration of how fundamental provider cohesion is to effective care at end of life. This article presents a variable-oriented analysis from a theory-based case study of a palliative care network to help bridge the knowledge gap in integration measurement. Data from a mixed-methods case study were mapped to a conceptual framework for evaluating integrated palliative care and a visual array depicting the extent of key factors in the represented palliative care network was formulated. The study included data from 21 palliative care network administrators, 86 healthcare professionals, and 111 family caregivers, all from an established palliative care network in Ontario, Canada. The framework used to guide this research proved useful in assessing qualities of integration and functioning in the palliative care network. The resulting visual array of elements illustrates that while this network performed relatively well at the multiple levels considered, room for improvement exists, particularly in terms of interventions that could facilitate the sharing of information. This study, along with the other evaluative examples mentioned, represents important initial attempts at empirically and comprehensively examining network-integrated palliative care and healthcare integration in general. © The Author(s) 2016.

Can elearning be used to teach palliative care? - medical students' acceptance, knowledge, and self-estimation of competence in palliative care after elearning.

PubMed

Schulz-Quach, Christian; Wenzel-Meyburg, Ursula; Fetz, Katharina

2018-04-27

Undergraduate palliative care education (UPCE) was mandatorily incorporated in medical education in Germany in 2009. Implementation of the new cross-sectional examination subject of palliative care (QB13) continues to be a major challenge for medical schools. It is clear that there is a need among students for more UPCE. On the other hand, there is a lack of teaching resources and patient availabilities for the practical lessons. Digital media and elearning might be one solution to this problem. The primary objective of this study is to evaluate the elearning course Palliative Care Basics, with regard to students' acceptance of this teaching method and their performance in the written examination on the topic of palliative care. In addition, students' self-estimation in competence in palliative care was assessed. To investigate students' acceptance of the elearning course Palliative Care Basics, we conducted a cross-sectional study that is appropriate for proof-of-concept evaluation. The sample consisted of three cohorts of medical students of Heinrich Heine University Dusseldorf (N = 670). The acceptance of the elearning approach was investigated by means of the standard evaluation of Heinrich Heine University. The effect of elearning on students' self-estimation in palliative care competencies was measured by means of the German revised version of the Program in Palliative Care Education and Practice Questionnaire (PCEP-GR). The elearning course Palliative Care Basics was well-received by medical students. The data yielded no significant effects of the elearning course on students' self-estimation in palliative care competencies. There was a trend of the elearning course having a positive effect on the mark in written exam. Elearning is a promising approach in UPCE and well-accepted by medical students. It may be able to increase students' knowledge in palliative care. However, it is likely that there are other approaches needed to change students' self-estimation in palliative care competencies. It seems plausible that experience-based learning and encounters with dying patients and their relatives are required to increases students' self-estimation in palliative care competencies. Heinrich Heine University Medical School Clinical Trial Registry No. 4876 (date of approval 26.11.2014).

The Attitudes of Indian Palliative-care Nurses and Physicians to Pain Control and Palliative Sedation

PubMed Central

Gielen, Joris; Gupta, Harmala; Rajvanshi, Ambika; Bhatnagar, Sushma; Mishra, Seema; Chaturvedi, Arvind K; den Branden, Stef Van; Broeckaert, Bert

2011-01-01

Aim: We wanted to assess Indian palliative-care nurses and physicians’ attitudes toward pain control and palliative sedation. Materials and Methods: From May to September 2008, we interviewed 14 physicians and 13 nurses working in different palliative-care programs in New Delhi, using a semi-structured questionnaire, and following grounded-theory methodology (Glaser and Strauss). Results: The interviewees did not consider administration of painkillers in large doses an ethical problem, provided the pain killers are properly titrated. Mild palliative sedation was considered acceptable. The interviewees disagreed whether palliative sedation can also be deep and continuous. Arguments mentioned against deep continuous palliative sedation were the conviction that it may cause unacceptable side effects, and impedes basic daily activities and social contacts. A few interviewees said that palliative sedation may hasten death. Conclusion: Due to fears and doubts regarding deep continuous palliative sedation, it may sometimes be too easily discarded as a treatment option for refractory symptoms. PMID:21633619

Quality palliative care for cancer and dementia in five European countries: some common challenges

PubMed Central

Davies, Nathan; Maio, Laura; van Riet Paap, Jasper; Mariani, Elena; Jaspers, Birgit; Sommerbakk, Ragni; Grammatico, Daniela; Manthorpe, Jill; Ahmedzai, Sam; Vernooij-Dassen, Myrra; Iliffe, Steve

2013-01-01

Objectives There is a growing consensus worldwide that palliative care needs to be both more inclusive of conditions other than cancer and to improve. This paper explores some common challenges currently faced by professionals providing palliative care for patients with either cancer or dementia across five countries. Method One focus group (n = 7) and 67 interviews were conducted in 2012 across five countries: England, Germany, Italy, the Netherlands and Norway, with professionals from dementia, cancer and palliative care settings. Results The interviews revealed five common challenges faced across the five countries: communication difficulties (between services; and between professionals, and patients and their families); the variable extent of structural/functional integration of services; the difficulties in funding of palliative care services; problematic processes of care (boundaries, definitions, knowledge, skills and inclusiveness) and, finally, time constraints. Conclusion These are not problems distinct to palliative care, but they may have different origins and explanations compared to other areas of health care. This paper explored deeper themes hidden behind a discourse about barriers and facilitators to improving care. PMID:24131061

Should there be an expanded role for palliative care in end-stage renal disease?

PubMed

Kurella Tamura, Manjula; Cohen, Lewis M

2010-11-01

In this review, we outline the rationale for expanding the role of palliative care in end-stage renal disease (ESRD), describe the components of a palliative care model, and identify potential barriers in implementation. Patients receiving chronic dialysis have reduced life expectancy and high rates of chronic pain, depression, cognitive impairment, and physical disability. Delivery of prognostic information and advance care planning are desired by patients, but occur infrequently. Furthermore, although hospice care is associated with improved symptom control and lower healthcare costs at the end of life, it is underutilized by the ESRD population, even among patients who withdraw from dialysis. A palliative care model incorporating communication of prognosis, advance care planning, symptom assessment and management, and timely hospice referral may improve quality of life and quality of dying. Resources and clinical practice guidelines are available to assist practitioners with incorporating palliative care into ESRD management. There is a large unmet need to alleviate the physical, psychosocial, and existential suffering of patients with ESRD. More fully integrating palliative care into ESRD management by improving end-of-life care training, eliminating structural and financial barriers to hospice use, and identifying optimal methods to deliver palliative care are necessary if we are to successfully address the needs of an aging ESRD population.

Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation.

PubMed

Froggatt, Katherine; Payne, Sheila; Morbey, Hazel; Edwards, Michaela; Finne-Soveri, Harriet; Gambassi, Giovanni; Pasman, H Roeline; Szczerbińska, Katarzyna; Van den Block, Lieve

2017-06-01

The provision of institutional long-term care for older people varies across Europe reflecting different models of health care delivery. Care for dying residents requires integration of palliative care into current care work, but little is known internationally of the different ways in which palliative care is being implemented in the care home setting. To identify and classify, using a new typology, the variety of different strategic, operational, and organizational activities related to palliative care implementation in care homes across Europe. We undertook a mapping exercise in 29 European countries, using 2 methods of data collection: (1) a survey of country informants, and (2) a review of data from publically available secondary data sources and published research. Through a descriptive and thematic analysis of the survey data, we identified factors that contribute to the development and implementation of palliative care into care homes at different structural levels. From these data, a typology of palliative care implementation for the care home sector was developed and applied to the countries surveyed. We identified 3 levels of palliative care implementation in care homes: macro (national/regional policy, legislation, financial and regulatory drivers), meso (implementation activities, such as education, tools/frameworks, service models, and research), and micro (palliative care service delivery). This typology was applied to data collected from 29 European countries and demonstrates the diversity of palliative care implementation activity across Europe with respect to the scope, type of development, and means of provision. We found that macro and meso factors at 2 levels shape palliative care implementation and provision in care homes at the micro organizational level. Implementation at the meso and micro levels is supported by macro-level engagement, but can happen with limited macro strategic drivers. Ensuring the delivery of consistent and high-quality palliative care in care homes is supported by implementation activity at these 3 levels. Understanding where each country is in terms of activity at these 3 levels (macro, meso, and micro) will allow strategic focus on future implementation work in each country. Copyright © 2017 AMDA – The Society for Post-Acute and Long-Term Care Medicine. Published by Elsevier Inc. All rights reserved.

A National Palliative Care Strategy for Canada

PubMed Central

2017-01-01

Abstract Objective: To identify barrier to achieving universal access to high quality palliative care in Canada, review published national strategies and frameworks to promote palliative care, examine key aspects that have been linked to successful outcomes, and make recommendations for Canada. Background: In 2014, the World Health Organization called on members to develop and implement policies to ensure palliative care is integrated into national health services. Methods: Rapid review supplemented by the author's personal files, outreach to colleagues within the international palliative care community, review of European Association for Palliative Care publications, and a subsequent search of the table of contents of the major palliative care journals. Results: Frameworks were found for 10 countries ranging from detailed and comprehensive multi-year strategies to more general approaches including laws guaranteeing access to palliative care services for “dying” patients or recommendations for the development of clinical infrastructure. Few formal evaluations were found minimal comparative data exist regarding the quality of care, access to palliative care services, timing of access in the disease trajectory, and patient and family satisfaction with care. Factors that appear to be associated with success include: 1) input and early involvement of senior policy makers; 2) comprehensive strategies that address major barriers to universal access and that involve the key constituents; 3) a focus on enhancing the evidence base and developing a national system of quality reporting; and 4) substantial and sustained government investment. Discussion: Comprehensive national strategies appear to improve access to high quality palliative care for persons with serious illness and their families. Such strategies require sustained government funding and address barriers related to infrastructure, professional and public education, workforce shortages, and an inadequate evidence base. PMID:29283876

Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes

PubMed Central

Reinke, Lynn F.; Cox, Christopher; Kross, Erin K.; Benzo, Roberto P.; Curtis, J. Randall

2017-01-01

Abstract Background: Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. Objective: The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. Methods: We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. Results: We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. Conclusions: The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members. PMID:28379812

Ethical Decisions in Palliative Care: Interprofessional Relations as a Burnout Protective Factor? Results From a Mixed-Methods Multicenter Study in Portugal.

PubMed

Hernández-Marrero, Pablo; Pereira, Sandra Martins; Carvalho, Ana Sofia

2016-09-01

Ethical decisions are part of contemporary practices in palliative care. The need of making such decisions is associated to higher burnout levels and other work related problems among healthcare professionals. As part of the project entitled "Decisions in End-of-Life Care in Spain and Portugal" (DELiCaSP), this study aims to (i) identify the most common ethical decisions made by Portuguese palliative care teams and (ii) understand how the making of such decisions relates to burnout. A mixed methods study was conducted with 9 palliative care teams, using (i) questionnaires of socio-demographic and professional variables, work-related experiences, (ii) the Maslach Burnout Inventory, (iii) interviews and (iv) observations. These teams were geographically dispersed across the country, covering the North, Centrum and South regions, and heterogeneous: Five palliative care units for inpatients; three home care teams; and one hospital support team. A total of 20 interviews and 240 hours of observations were completed until reaching saturation. The most common ethical decisions were related to communication issues (information disclosure of the diagnosis and prognosis), forgoing treatment and sedation. Although perceived as stressful, emotionally demanding and challenging, ethical decisions were not significantly associated with burnout. Making ethical decisions is not associated with higher burnout levels among professionals working in Portuguese palliative care teams. This can be explained by the interprofessional decision-making process followed by these teams, which promotes a sense of shared-decision and team-based empowerment; and by the advanced level of interdisciplinary education in palliative care that these professionals have. © The Author(s) 2015.

A multi-professional educational intervention to improve and sustain respondents' confidence to deliver palliative care: A mixed-methods study.

PubMed

Reed, Elizabeth; Todd, Jennifer; Lawton, Sally; Grant, Robert; Sadler, Clair; Berg, Jane; Lucas, Caroline; Watson, Max

2018-02-01

Education has been highlighted as fundamental in equipping healthcare professionals with essential knowledge and skills to provide good end-of-life care. Multiprofessional educational programmes have a positive influence on knowledge, attitude and confidence but few have sought to understand the longer term impact on care delivery. The European Certificate in Essential Palliative Care is an 8-week home-study-based programme for healthcare professionals and is currently run in nine centres. Successful candidates have undertaken the course from their own countries around the world. This article describes the evaluation of the European Certificate in Essential Palliative Care which has been evolving over 15 years. To evaluate the impact an educational intervention has on participants' confidence in palliative care, to determine whether this is sustained over time and explore participants' perception of the influence of the course on confidence. A mixed-method longitudinal approach. A survey using a self-efficacy scale was emailed to 342 candidates who received an educational intervention and semi-structured interviews to a sub-sample of 15 candidates at baseline, 3 and 6 months. At 3 months, candidates had almost 20 times higher odds of being above any given level of confidence than at baseline which was sustained at 6 months. Qualitative analysis identified examples of increased competence and confidence improving palliative care delivery. Findings suggest that the European Certificate in Essential Palliative Care improves confidence in palliative care and that this is sustained over time with evidence of confidence in symptom control, communication and a holistic approach in clinical practice.

Palliative Care in Huntington Disease: Personal Reflections and a Review of the Literature

PubMed Central

Tarolli, Christopher G.; Chesire, Amy M.; Biglan, Kevin M.

2017-01-01

Background Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease modifying therapies exist for the condition and current treatments are symptomatic. Palliative care is an approach to care that focuses on symptom relief, patient and caregiver support, and end of life care. There is increasing evidence of the benefit of palliative care throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of palliative care in Huntington disease. Methods In this article, we discuss what is known about palliative care in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end of life care. Results We provide a review of the current literature and discuss our own care practices. Discussion We conclude by discussing questions that remain unanswered and positing ideas for future work in the field. PMID:28428907

Suboptimal palliative sedation in primary care: an exploration.

PubMed

Pype, Peter; Teuwen, Inge; Mertens, Fien; Sercu, Marij; De Sutter, An

2018-02-01

Palliative sedation is a therapeutic option to control refractory symptoms in terminal palliative patients. This study aims at describing the occurrence and characteristics of suboptimal palliative sedations in primary care and at exploring the way general practitioners (GPs) experience suboptimal palliative sedation in their practice. We conducted a mixed methods study with a quantitative prospective survey in primary care and qualitative semi-structured interviews with GPs. The research team defined suboptimal palliative sedation as a time interval until deep sleep >1.5 h and/ or >2 awakenings after the start of the unconsciousness. Descriptive statistics were calculated on the quantitative data. Thematic analysis was used to analyse interview transcripts. We registered 63 palliative sedations in 1181 home deaths, 27 forms were completed. Eleven palliative sedations were suboptimal: eight due to the long time span until deep sleep; three due the number of unintended awakenings. GPs' interview analysis revealed two major themes: the shifting perception of failure and the burden of responsibility. Suboptimal palliative sedation occurs frequently in primary palliative care. Efficient communication towards family members is needed to prevent them from having unrealistic expectations and to prevent putting pressure on the GP to hasten the procedure. Sharing the burden of decision-making during the procedure with other health care professionals might diminish the heavy responsibility as perceived by GPs.

Integrating palliative care into neurology services: what do the professionals say?

PubMed Central

Gao, Wei; Evans, Catherine J; Jackson, Diana; van Vliet, Liesbeth M; Byrne, Anthony; Crosby, Vincent; Groves, Karen E; Lindsay, Fiona; Higginson, Irene J

2018-01-01

Objectives Evaluations of new services for palliative care in non-cancer conditions are few. OPTCARE Neuro is a multicentre trial evaluating the effectiveness of short-term integrated palliative care (SIPC) for progressive long-term neurological conditions. Here, we present survey results describing the current levels of collaboration between neurology and palliative care services and exploring the views of professionals towards the new SIPC service. Methods Neurology and palliative care teams from six UK trial sites (London, Nottingham, Liverpool, Cardiff, Brighton and Chertsey) were approached via email to complete an online survey. The survey was launched in July 2015 and consisted of multiple choice or open comment questions with responses collected using online forms. Results 33 neurology and 26 palliative care professionals responded. Collaborations between the two specialties were reported as being ‘good/excellent’ by 36% of neurology and by 58% of palliative care professionals. However, nearly half (45%) of neurology compared with only 12% of palliative care professionals rated current levels as being ‘poor/none’. Both professional groups felt that the new SIPC service would influence future collaborations for the better. However, they identified a number of barriers for the new SIPC service such as resources and clinician awareness. Conclusions Our results demonstrate the opportunity to increase collaboration between neurology and palliative care services for people with progressive neurological conditions, and the acceptability of SIPC as a model to support this. Trial registration number ISRCTN18337380; Pre-results. PMID:28774963

Raising the Bar for the Care of Seriously Ill Patients: Results of a National Survey to Define Essential Palliative Care Competencies for Medical Students and Residents

PubMed Central

Schaefer, Kristen G.; Chittenden, Eva H.; Sullivan, Amy M.; Periyakoil, Vyjeyanth S.; Morrison, Laura J.; Carey, Elise C.; Sanchez-Reilly, Sandra; Block, Susan D.

2014-01-01

Purpose Given the shortage of palliative care specialists in the U.S., to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts. Method Proposed competencies were derived from existing Hospice and Palliative Medicine fellowship competencies, and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains. Results The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate=72%, 71/98). Using predefined cut-off criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains. Conclusions This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community. PMID:24979171

A qualitative study: potential benefits and challenges of traditional healers in providing aspects of palliative care in rural South Africa.

PubMed

Campbell, L M; Amin, N N

2014-01-01

This article draws on selected palliative care providers' views and experiences to reflect on the potential benefits and possible challenges of involving traditional healers in palliative care in rural areas of South Africa. There is increasing consensus that palliative care should be offered by a range of professional and non-professional healthcare givers. Including non-professionals such as traditional healers in a palliative care team may strengthen care provisioning as they have intimate knowledge of patients' local culture and spiritual beliefs. Employing the qualitative method of photo-elicitation, one-on-one discussions about the photographs taken by participants were conducted. The participants - 4 palliative care nurses and 17 home-based care workers - were purposively selected to provide in-depth information about their experiences as palliative caregivers in rural homes. Healthcare workers' experiences revealed that the patients they cared for valued traditional rituals connected to illness, dying, death and bereavement. Participants suggested that traditional healers should be included in palliative care training programs as they could offer appropriate psychological, cultural and spiritual care. A challenge identified by participants was the potential of traditional healers to foster a false sense of longevity in patients facing death. The importance of recognising the value of traditional practices in palliative care should not be underrated in rural South Africa. Traditional healers could enhance palliative care services as they have deep, insider knowledge of patients' spiritual needs and awareness of cultural practices relating to illness, death, dying and bereavement. Incorporating traditional healers into healthcare services where there are differences in the worldviews of healthcare providers and patients, and a sensitivity to mediate cultural differences between caregivers and patients, could have the benefit of providing appropriate care in rural spaces. Considering the influences of cultural and spiritual beliefs on the wellbeing of patients living in rural areas, the inclusion of traditional healers in a palliative care team is a sensible move. It is, nevertheless, important to note that unanticipated challenges may arise with respect to power differentials within the palliative care team and to beliefs that contradict medical prognosis.

[Implementing the Cross-Disciplinary Subject Palliative Care - Lecture's Perspective].

PubMed

Isermeyer, Leonie; Ilse, Benjamin; Marx, Gabriella; Seidemann, Stephanie; Jünger, Jana; Nauck, Friedemann; Alt-Epping, Bernd

2017-11-01

Introduction  In 2009, palliative care was introduced as a mandatory subject in the undergraduate medical curriculum in Germany. Despite all efforts to integrate this subject into the curriculum, research suggests substantial differences and deficits in the quality of education between the medical schools. The aim of this research was to find out promoting as well as impedimental aspects of implementing palliative care in the medical training program. By this, a suitable framework in terms of content and structure for palliative care teaching should be extracted. Methods  We performed guided interviews with 15 of the in total 36 lecturers responsible for the implementation of palliative care teaching at their respective medical schools. We focused on content, design and methods of implementation within the palliative care curriculum. Data was evaluated by content analysis according to Meuser and Nagel. Results  We found that a lack of recognition of this subject within the medical faculties, coupled with entrenched structures of an already packed syllabus, were considered to be most relevant for the given heterogeneity in the implementation process. Deficits in personnel, financial and time resources also contributed to the perceived deficits. Faced with these difficulties, inner- and cross-faculty teamwork and support, extracurricular activities as well as external funds have proven to be important resources. Discussion  To promote the implementation process, medical faculties need established palliative care structures that meet the interests and needs of the students more effectively. Analysis of structural needs (for instance, the amount of apprenticeships and teachings units) would be an important step to prove political claims. Moreover, the development of suitable and resource-saving teaching and assessment methods should be promoted. © Georg Thieme Verlag KG Stuttgart · New York.

Barriers to the Collaboration Between Hematologists and Palliative Care Teams on Relapse or Refractory Leukemia and Malignant Lymphoma Patients' Care: A Qualitative Study.

PubMed

Morikawa, Miharu; Shirai, Yuki; Ochiai, Ryota; Miyagawa, Kiyoshi

2016-12-01

Palliative care service (PCS) has been shown to be utilized less in patients with leukemia and malignant lymphoma than in those with solid tumors. Previous studies have suggested hematologists' limited awareness of PCS as one of the reason for low PCS referral in hematology. However, little is known about such an awareness and potential barriers to collaboration between hematologists and PCS. The present study aimed to assess ematologists and palliative care specialists' perception about the roles of the hospital-based palliative care team (HPCT) and the barriers to collaboration between hematologists and palliative care teams on relapse or refractory leukemia and malignant lymphoma patients' care MATERIALS AND METHODS: A qualitative study was conducted using semistructured interviews with hematologists and palliative care specialists recruited from a hospital that provides hematology and palliative care by the HPCT. Data were evaluated via content analysis. The study included 11 hematologists and 10 palliative care specialists. Our results revealed that they shared many common perceptions about the roles and expectations of the HPCT. Additionally, 7 categories of barriers to collaboration were identified, including not feeling the need to refer, the difficulty in referral timing, the lack of aggressive approach, the negative image of the HPCT, the need for hematologic malignancy-oriented management, the lack of communication, and others. We have identified hematologists' and palliative care specialists' perceptions of the HPCT's roles and the barriers to their collaboration. A better understanding of such barriers may lead to effective collaboration between hematologists and the HPCT. © The Author(s) 2015.

Palliative care education in Latin America: A systematic review of training programs for healthcare professionals.

PubMed

Vindrola-Padros, Cecilia; Mertnoff, Rosa; Lasmarias, Cristina; Gómez-Batiste, Xavier

2018-02-01

The integration of palliative care (PC) education into medical and nursing curricula has been identified as an international priority. PC education has undergone significant development in Latin America, but gaps in the integration of PC courses into undergraduate and postgraduate curricula remain. The aim of our review was to systematically examine the delivery of PC education in Latin America in order to explore the content and method of delivery of current PC programs, identify gaps in the availability of education opportunities, and document common barriers encountered in the course of their implementation. We carried out a systematic review of peer-reviewed academic articles and grey literature. Peer-reviewed articles were obtained from the following databases: CINAHL Plus, Embase, the Web of Science, and Medline. Grey literature was obtained from the following directories: the International Association for Hospice and Palliative Care's Global Directory of Education in Palliative Care, the Worldwide Hospice Palliative Care Alliance's lists of palliative care resources, the Latin American Association for Palliative Care's training resources, and the Latin American Atlas of Palliative Care. The inclusion criteria were that the work: (1) focused on describing PC courses; (2) was aimed at healthcare professionals; and (3) was implemented in Latin America. The PRISMA checklist was employed to guide the reporting of methods and findings. We found 36 programs that were delivered in 8 countries. Most of the programs were composed of interdisciplinary teams, taught at a postgraduate level, focused on pain and symptom management, and utilized classroom-based methods. The tools for evaluating the courses were rarely reported. The main barriers during implementation included: a lack of recognition of the importance of PC education, a lack of funding, and the unavailability of trained teaching staff. Considerable work needs to be done to improve the delivery of PC education programs in Latin American countries. Practice-based methods and exposure to clinical settings should be integrated into ongoing courses to facilitate learning. A regional platform needs to be created to share experiences of successful training programs and foster the development of PC education throughout Latin America.

Psychosocial Care Provided by Physicians and Nurses in Palliative Care: A Mixed Methods Study.

PubMed

Fan, Sheng-Yu; Lin, I-Mei; Hsieh, Jyh-Gang; Chang, Chih-Jung

2017-02-01

Psychosocial care is an important component of palliative care, which is also provided by physicians and nurses. The aim of this study was to explore the experiences of physicians and nurses in palliative care regarding the process of psychosocial care, the difficulties, and the support needs from "psychosocial care professionals." A two-phase mixed methods study was conducted. In the first phase, 16 physicians and nurses with palliative care experience were recruited. A semi-structured interview was used to collect data about their experience of providing psychosocial care, and these were analyzed using thematic analysis. In the second phase, 88 physicians and nurses completed an online survey that was developed from the qualitative results. Qualitative results revealed three themes: 1) the contents of psychosocial care included not only disease-related events but also emotional and family support, 2) providing psychosocial care was a dynamic process including assessment, interventions, and evaluation, and 3) there were difficulties from the participants themselves, patients and families, and the system. Participants also reflected on what they did and the influences of providing care on themselves. Quantitative results showed that the most common psychosocial care was discussion about the progress of the disease and future care plan; the difficulty was the long-term problems in families; and the psychosocial care professionals most needed were social workers and clinical/counseling psychologists. Understanding the process of psychosocial care and integrating it with specialized mental health care in a team could improve the quality of psychosocial care in palliative care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Evaluation of Knowledge Among Interns in a Medical College Regarding Palliative Care in People Living with HIV/AIDS and the Impact of a Structured Intervention

PubMed Central

Valsangkar, Sameer; Bodhare, Trupti N; Pande, Shripad B; Bele, Samir D; Rao, B Sitarama

2011-01-01

Background: The evolving nature of palliative care and its renewed role in people living with HIV/AIDS (PLWHA) in the post-HAART (highly active anti-retroviral therapy) era warrants an evaluation of the present curriculum in medical under graduates. Objectives: The objectives are(1) to measure the existing knowledge regarding palliative care and its application to PLWHA among medical interns and (2) to measure the impact of a structured intervention on knowledge dimensions. Design and Setting: Interventional repeated measures study. Materials and Methods: A convenience sample of 106 interns in the medical college completed a pre-test assessment and a post-test assessment following a structured intervention for evaluation and comparison of knowledge over three dimensions which were (1) knowledge of palliative care and its application in PLWHA, (2) medical symptoms in PLWHA requiring palliative care and (3) psychosocial needs in PLWHA requiring palliative care. Results: The mean scores on knowledge showed a consistent increase after the structured intervention and Student’s t-test was significant across three dimensions of knowledge of palliative care and its application (t=9.12, P value <0.001), medical symptoms in PLWHA requiring palliative care (t=12.72, P value <0.001) and psychosocial needs in PLWHA (t=11.14, P value <0.001). Conclusion: In spite of the unique challenges presented by the varying course of illness in PLWHA and the variety of needs on the medical, psychosocial and family dimensions, a structured approach and an integrated course curriculum involving principles of both primary and palliative care principles will improve the efficiency of the undergraduate medical education program and enable delivery of effective palliative care interventions and improve quality of life in PLWHA. PMID:21633615

Characterizing the Role of U.S. Surgeons in the Provision of Palliative Care: A Systematic Review and Mixed-Methods Meta-Synthesis.

PubMed

Suwanabol, Pasithorn A; Kanters, Arielle E; Reichstein, Ari C; Wancata, Lauren M; Dossett, Lesly A; Rivet, Emily B; Silveira, Maria J; Morris, Arden M

2018-04-01

The provision of palliative care varies appropriately by clinical factors such as patient age and severity of disease and also varies by provider practice and specialty. Surgical patients are persistently less likely to receive palliative care than their medical counterparts for reasons that are not clear. We sought to characterize surgeon-specific determinants of palliative care in seriously ill and dying patients. We performed a systematic review of the literature focused on surgery and palliative care within PubMed, CINAHL, EMBASE, Scopus, and Ovid Medline databases from January 1, 2000 through December 31, 2016 according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Quantitative and qualitative studies with primary data evaluating surgeons' attitudes, knowledge, and behaviors or experiences in care for seriously ill and dying patients were selected for full review by at least two study team members based on predefined inclusion criteria. Data were extracted based on a predetermined instrument and compared across studies using thematic analysis in a meta-synthesis of qualitative and quantitative findings. A total of 2589 abstracts were identified and screened, and 35 articles (26 quantitative and nine qualitative) fulfilled criteria for full review. Among these, 17 articles explored practice and attitudes of surgeons regarding palliative and end-of-life care, 11 articles assessed training in palliative care, five characterized surgical decision making, one described behaviors of surgeons caring for seriously ill and dying patients, and one explicitly identified barriers to use of palliative care. Four major themes across studies affected receipt of palliative care for surgical patients: 1) surgeons' experience and knowledge, 2) surgeons' attitudes, 3) surgeons' preferences and decision making for treatment, and 4) perceived barriers. Among the articles reviewed, surgeons overall demonstrated insight into the benefits of palliative care but reported limited knowledge and comfort as well as a multitude of challenges to introducing palliative care to their patients. These findings indicate a need for wider implementation of strategies that allow optimal integration of palliative care with surgical decision making. Published by Elsevier Inc.

Paediatric Palliative Care and Intellectual Disability--A Unique Context

ERIC Educational Resources Information Center

Duc, Jacqueline K.; Herbert, Anthony Robert; Heussler, Helen S.

2017-01-01

Background: Paediatric palliative care is a nuanced area of practice with additional complexities in the context of intellectual disability. There is currently minimal research to guide clinicians working in this challenging area of care. Method: This study describes the complex care of children with life-limiting conditions and intellectual…

[Use of the film Keep on the open road in palliative care education of undergraduate medical students : Proof-of-concept study].

PubMed

Dietz, I; Gerbershagen, K; Mielke, A; Pattberg, S; Pesch, E; Poels, M; Schmalz, O; Joppich, R

2012-09-01

Recently palliative care has become an integral and compulsory part of undergraduate medical training in Germany. From 2014 onwards every German medical faculty must have developed and implemented undergraduate teaching in this cross-disciplinary medical field and to conduct examinations. At Witten/Herdecke University (Germany) this new cross-sectional course in palliative care was taught for the first time in 2011. The film "Keep on the open road" was incorporated and the use of this film as part of compulsory palliative care education was evaluated from the student perspective. In two teaching units (1.5 h each) the film was watched with the students and discussed in the context of the palliative care setting with a special focus on psychosocial aspects. A semi-quantitative evaluation was performed after the debriefing. A total of 23 students participated in the course, 87 % (n = 20) evaluated the use of the film as unrestricted useful and 14 indicated a benefit from the film in terms of their medical attitude. Most of the students (n = 19, 83%) did not consider bed-side teaching to be more useful than the film unit. The free text answers underlined that primarily the multidisciplinary aspects of a palliative treatment situation and the meaning of a social environment were highlighted by the film. According to the evaluation of the students and the judgement of the participating teachers the use of the film is a suitable method to clarify complex medical, social and psychological aspects in palliative care. Especially at faculties with much larger numbers of students the film unit is thought to be a helpful method to teach psychosocial aspects and to promote development of attitude in palliative care. In future semesters further experience with the unit and the use of films in palliative care teaching will be collected.

Optimal approaches to the health economics of palliative care: report of an international think tank.

PubMed

Gomes, Barbara; Harding, Richard; Foley, Kathleen M; Higginson, Irene J

2009-07-01

More people will need palliative care in aging societies with stretched health budgets and less ability to provide informal care. The future will bring new and tougher challenges to sustain, optimize, and expand the 8000 dedicated palliative care services that currently exist in the world. The full breakdown of the costs of palliative care is yet to be unveiled, and this has left huge unresolved questions for funding, costing, evaluating, and modeling palliative care. At an international meeting in London in November 2007, a group of 40 researchers, health economists, policy makers, and advocates exchanged their experiences, concerns, and recommendations in five main areas: shared definitions, strengths and weaknesses of different payment systems, international and country-specific research challenges, appropriate economic evaluation methods, and the varied perspectives to the costs of palliative care. This article reports the discussions that took place and the views of this international group of experts on the best research approaches to capture, analyze, and interpret data on both costs and outcomes for families and patients toward the end of life.

Impact of Oncologists’ Attitudes Toward End-of-Life Care on Patients’ Access to Palliative Care

PubMed Central

Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

2016-01-01

Background. It is unclear how oncologists’ attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists’ EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. Methods. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians’ report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Results. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5–7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p < .001) but not with cancer treatment decisions. We observed a gradient effect, with higher scores associated with a greater proportion of patients referred to palliative care (score 0–4, 27%; 5, 31%; 6, 32%; 7, 35%; and 8, 45%; p = .007). Conclusion. Greater comfort with EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. Implications for Practice: In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary palliative care. PMID:27412394

Physiotherapy in the care of the dying.

PubMed

Davies, B

1980-01-01

This paper examines the role of the physiotherapist in the care of patients whose conditions have reached the point at which intensive active treatment is no longer appropriate and is, therefore, replaced by palliative care directed toward the comfort and support of the patients and their families. The principles of physiotherapy in the delivery of palliative care (modified treatment aims, team approach, and acceptance of death), the possible contexts--both physical and psychological--of effective palliative care, and the attitudinal characteristics of physiotherapists best suited to the implementation of effective palliative care are discussed. The results of a survey of Canadian undergraduate training in physiotherapeutic palliative care, and the present level and method of instruction in this area, are included. The article demonstrates how the physiotherapist can play a central role in the multidisciplinary approach to terminal patient care by assisting patients to make the most of their decreasing potentials, by encouraging them to set short-term goals, and by relieving them of their discomfort.

Judgements about fellow professionals and the management of patients receiving palliative care in primary care: a qualitative study.

PubMed

Walshe, Catherine; Todd, Chris; Caress, Ann-Louise; Chew-Graham, Carolyn

2008-04-01

Policies emphasise the importance of collaborative working in community palliative care. Collaborations are generally formed through formal and informal referral processes, but little is known about what influences professionals' decisions to refer to such services. To explore the influences on referrals within general and specialist community palliative care services. Qualitative, multiple-case study. Three primary care trusts in the north-west of England. Multiple data collection methods were employed, including documentary analysis, observation of referral team meetings and interviews. This paper primarily reports data from interviews with 47 health professionals, including GPs, district nurses, and specialist palliative care professionals. Judgements -- positive and negative -- about aspects of fellow professionals' performances appeared to influence referral decisions and ongoing collaboration and care. Attributes upon which these judgements were based included professional responsiveness and communication, respect, working and workload management practices, perceived expertise, and notions of elite practice. The effects of such judgements on referral and healthcare practices were altered by professional "game playing" to achieve professionals' desired outcomes. Palliative care policies and protocols need to take account of these complex and subtle influences on referrals and collaboration. In particular, teamwork and partnership are encouraged within palliative care work, but critical judgements indicate that such partnerships may be difficult or fragile. It is likely that such judgemental attitudes and practices affect many aspects of primary care, not just palliative care.

Telemedicine’s Potential to Support Good Dying in Nigeria: A Qualitative Study

PubMed Central

van Gurp, Jelle; Soyannwo, Olaitan; Odebunmi, Kehinde; Dania, Simpa; van Selm, Martine; van Leeuwen, Evert; Vissers, Kris; Hasselaar, Jeroen

2015-01-01

Objectives This qualitative study explores Nigerian health care professionals’ concepts of good dying/a good death and how telemedicine technologies and services would fit the current Nigerian palliative care practice. Materials and Methods Supported by the Centre for Palliative Care Nigeria (CPCN) and the University College Hospital (UCH) in Ibadan, Nigeria, the authors organized three focus groups with Nigerian health care professionals interested in palliative care, unstructured interviews with key role players for palliative care and representatives of telecom companies, and field visits to primary, secondary and tertiary healthcare clinics that provided palliative care. Data analysis consisted of open coding, constant comparison, diagramming of categorizations and relations, and extensive member checks. Results The focus group participants classified good dying into 2 domains: a feeling of completion of the individual life and dying within the community. Reported barriers to palliative care provision were socio-economic consequences of being seriously ill, taboos on dying and being ill, restricted access to adequate medical–technical care, equation of religion with medicine, and the faulty implementation of palliative care policy by government. The addition of telemedicine to Nigeria’s palliative care practice appears problematic, due to irregular bandwidth, poor network coverage, and unstable power supply obstructing interactivity and access to information. However, a tele-education ‘lite’ scenario seemed viable in Nigeria, wherein low-tech educational networks are central that build on non-synchronous online communication. Discussion Nigerian health care professionals’ concepts on good dying/a good death and barriers and opportunities for palliative care provision were, for the greater part, similar to prior findings from other studies in Africa. Information for and education of patient, family, and community are essential to further improve palliative care in Africa. Telemedicine can only help if low-tech solutions are applied that work around network coverage problems by focusing on non-synchronous online communication. PMID:26030154

Improving the evidence base in palliative care to inform practice and policy: thinking outside the box.

PubMed

Aoun, Samar M; Nekolaichuk, Cheryl

2014-12-01

The adoption of evidence-based hierarchies and research methods from other disciplines may not completely translate to complex palliative care settings. The heterogeneity of the palliative care population, complexity of clinical presentations, and fluctuating health states present significant research challenges. The aim of this narrative review was to explore the debate about the use of current evidence-based approaches for conducting research, such as randomized controlled trials and other study designs, in palliative care, and more specifically to (1) describe key myths about palliative care research; (2) highlight substantive challenges of conducting palliative care research, using case illustrations; and (3) propose specific strategies to address some of these challenges. Myths about research in palliative care revolve around evidence hierarchies, sample heterogeneity, random assignment, participant burden, and measurement issues. Challenges arise because of the complex physical, psychological, existential, and spiritual problems faced by patients, families, and service providers. These challenges can be organized according to six general domains: patient, system/organization, context/setting, study design, research team, and ethics. A number of approaches for dealing with challenges in conducting research fall into five separate domains: study design, sampling, conceptual, statistical, and measures and outcomes. Although randomized controlled trials have their place whenever possible, alternative designs may offer more feasible research protocols that can be successfully implemented in palliative care. Therefore, this article highlights "outside the box" approaches that would benefit both clinicians and researchers in the palliative care field. Ultimately, the selection of research designs is dependent on a clearly articulated research question, which drives the research process. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Pediatric Palliative Care in Iran: Applying Regionalization of Health Care Systems

PubMed

Khanali Mojen, Leila; Rassouli, Maryam; Eshghi, Peyman; Zendedel, Kazem; Akbari Sari, Ali; Heravi Karimooi, Majideh; Tahmasebi, Mamak; Shirin Abadi Farahani, Azam

2018-05-26

Background: Establishing palliative care services is a priority in the health system of Iran. Considering the necessity of integrating these services into the health system, this study aimed to explore the stakeholders’ perceptions about the provision of a conceptual framework for palliative care services for children with cancer according to the health system in of Iran. Methods: The present qualitative study was conducted through in-depth semi-structured interviews held with 29 participants including palliative care specialists, policy-makers, health care providers, the parents of children with cancer selected through purposive sampling, between August 2016 and February 2017. Interviews continued until saturation of data. All interviews were recorded, transcribed and analyzed using MAXQDA10 software. Results: The codes extracted from interviews produced the main theme “ classes of palliative care services” with the two main categories “comprehensive care” including, strengthening family shelter, maintaining the child in a familiar environment, achieving stability and “establishing social justice” including, easy access to services, financial relief and quality care. Conclusion: Presenting a framework based on level of palliative care services, the findings of this study paves the way for integrating these services into Iranian health system. Creative Commons Attribution License

The Palliative Care in Heart Failure (PAL-HF) Trial: Rationale and Design

PubMed Central

Mentz, Robert J.; Tulsky, James A.; Granger, Bradi B.; Anstrom, Kevin J.; Adams, Patricia A.; Dodson, Gwen C.; Fiuzat, Mona; Johnson, Kimberly S.; Patel, Chetan B.; Steinhauser, Karen E.; Taylor, Donald H.; O’Connor, Christopher M.; Rogers, Joseph G.

2014-01-01

Background The progressive nature of heart failure (HF) coupled with high mortality and poor quality of life mandates greater attention to palliative care as a routine component of advanced HF management. Limited evidence exists from randomized, controlled trials supporting the use of interdisciplinary palliative care in HF. Methods The Palliative Care in Heart Failure trial (PAL-HF) is a prospective, controlled, unblinded, single-center study of an interdisciplinary palliative care intervention in 200 patients with advanced HF estimated to have a high likelihood of mortality or re-hospitalization in the ensuing 6 months. The 6-month PAL-HF intervention focuses on physical and psychosocial symptom relief, attention to spiritual concerns and advanced care planning. The primary endpoint is health-related quality of life measured by the Kansas City Cardiomyopathy Questionnaire and the Functional Assessment of Chronic Illness Therapy with Palliative Care Subscale score at 6 months. Secondary endpoints include changes in anxiety/depression, spiritual well-being, caregiver satisfaction, cost and resource utilization, and a composite of death, HF hospitalization and quality of life. Conclusions PAL-HF is a randomized, controlled clinical trial that will help evaluate the efficacy and cost-effectiveness of palliative care in advanced HF using a patient-centered outcome as well as clinical and economic endpoints. PMID:25440791

Comfort experience in palliative care: a phenomenological study.

PubMed

Coelho, Adriana; Parola, Vitor; Escobar-Bravo, Miguel; Apóstolo, João

2016-08-02

Palliative care aims to provide maximum comfort to the patient. However it is unknown what factors facilitate or hinder the experience of comfort, from the perspective of inpatients of palliative care units. This lack of knowledge hinders the development of comfort interventions adjusted to these patients. The aim of this research is to describe the comfort and discomfort experienced by inpatients at palliative care units. A phenomenological descriptive study was undertaken. Ten inpatients were recruited from a Spanish palliative care unit and seven from a Portuguese palliative care unit. Data were collected using individual interviews and analysed following the method of Giorgi. Four themes reflect the essence of the lived experience: The Palliative Care as a response to the patient's needs with advanced disease, attempt to naturalize advanced disease, confrontation with their own vulnerability, openness to the spiritual dimension. Informants revealed that they experience comfort through humanized care, differentiated environment, symptomatic control, hope and relationships. The discomfort emerges from the losses and powerlessness against their situation. Even if such findings may seem intuitive, documenting them is essential because it invites us to reflect on our convictions about what it means to be comfortable for these patients, and allows incorporating this information in the design of focused interventions to maximize the comfort experience.

Function of local networks in palliative care: a Dutch view.

PubMed

Nikbakht-Van de Sande, C V M Vahedi; van der Rijt, C C D; Visser, A Ph; ten Voorde, M A; Pruyn, J F A

2005-08-01

Although network formation is considered an effective method of stimulating the integrated delivery of palliative care, scientific evidence on the usefulness of network formation is scarce. In 1998 the Ministry of Health of The Netherlands started a 5-year stimulation program on palliative care by founding and funding six regional Centres for the Development of Palliative Care. These centers were structured around pivotal organizations such as university hospitals and comprehensive cancer centers. As part of the stimulation program a locoregional network model was introduced within each center for the Development of Palliative Care to integrate palliative care services in the Dutch health care system. We performed a study on network formation in the southwestern area of The Netherlands with 2.4 million inhabitants. The study aimed to answer the following questions: (1) how do networks in palliative care develop, which care providers participate and how do they function? (2) which are the achievements of the palliative care networks as perceived by their participants? (3) which are the success factors of the palliative care networks according to their participants and which factors predict the achievements? Between September 2000 and January 2004 eight local palliative care networks in the region of the Center for Development of Palliative Care-Rotterdam (southwestern area of The Netherlands) were closely followed to gain information on their characteristics and developmental course. At the start of the study semistructured interviews were held with the coordinators of the eight networks. The information from these interviews and from the network documents were used to constitute a questionnaire to assess the opinions and experiences of the network participants. According to the vast majority of responders, the most important reason to install the networks was the lack of integration between the existing local health care services. The networks were initiated to stimulate mutual collaboration, improve accessibility to health care services and increase the quality of these services. The most important achievements obtained by the palliative care networks were: increase in personal contacts between colleagues in a region, improved engagement and collaboration between participating organizations, enhanced insight in the health care provisions, joined initiatives for the development of new care products, and organization of patient-tailored care. Important success factors for the networks were deemed: fruitful mutual contacts, regular funding and the collective development of care products. By logistic regression analyses, the collective development of new care products and the organization of case discussions between caregivers from different health care services turned out to be the most important predictors for success of the palliative care networks. Projects that stimulate the communication between professionals appear to improve the mutual collaboration between individual participants and between the participating organizations, which consequently enhances the quality of palliative care.

Computer screening for palliative care needs in primary care: a mixed-methods study.

PubMed

Mason, Bruce; Boyd, Kirsty; Steyn, John; Kendall, Marilyn; Macpherson, Stella; Murray, Scott A

2018-05-01

Though the majority of people could benefit from palliative care before they die, most do not receive this approach, especially those with multimorbidity and frailty. GPs find it difficult to identify such patients. To refine and evaluate the utility of a computer application (AnticiPal) to help primary care teams screen their registered patients for people who could benefit from palliative care. A mixed-methods study of eight GP practices in Scotland, conducted in 2016-2017. After a search development cycle the authors adopted a mixed-methods approach, combining analysis of the number of people identified by the search with qualitative observations of the computer search as used by primary care teams, and interviews with professionals and patients. The search identified 0.8% of 62 708 registered patients. A total of 27 multidisciplinary meetings were observed, and eight GPs and 10 patients were interviewed. GPs thought the search identified many unrecognised patients with advanced multimorbidity and frailty, but were concerned about workload implications of assessment and care planning. Patients and carers endorsed the value of proactive identification of people with advanced illness. GP practices can use computer searching to generate lists of patients for review and care planning. The challenges of starting a conversation about the future remain. However, most patients regard key components of palliative care (proactive planning, including sharing information with urgent care services) as important. Screening for people with deteriorating health at risk from unplanned care is a current focus for quality improvement and should not be limited by labelling it solely as 'palliative care'. © British Journal of General Practice 2018.

Funding models in palliative care: Lessons from international experience.

PubMed

Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss Em

2017-04-01

Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. To assess national models and methods for financing and reimbursing palliative care. Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest.

Improving End-of-Life Care: Palliative Care Embedded in an Oncology Clinic Specializing in Targeted and Immune-Based Therapies.

PubMed

Einstein, David J; DeSanto-Madeya, Susan; Gregas, Matthew; Lynch, Jessica; McDermott, David F; Buss, Mary K

2017-09-01

Patients with advanced cancer benefit from early involvement of palliative care. The ideal method of palliative care integration remains to be determined, as does its effectiveness for patients treated with targeted and immune-based therapies. We studied the impact of an embedded palliative care team that saw patients in an academic oncology clinic specializing in targeted and immune-based therapies. Patients seen on a specific day accessed the embedded model, on the basis of automatic criteria; patients seen other days could be referred to a separate palliative care clinic (usual care). We abstracted data from the medical records of 114 patients who died during the 3 years after this model's implementation. Compared with usual care (n = 88), patients with access to the embedded model (n = 26) encountered palliative care as outpatients more often ( P = .003) and earlier (mean, 231 v 109 days before death; P < .001). Hospice enrollment rates were similar ( P = .303), but duration was doubled (mean, 57 v 25 days; P = .006), and enrollment > 7 days before death-a core Quality Oncology Practice Initiative metric-was higher in the embedded model (odds ratio, 5.60; P = .034). Place of death ( P = .505) and end-of-life chemotherapy (odds ratio, 0.361; P = .204) did not differ between the two arms. A model of embedded and automatically triggered palliative care among patients treated exclusively with targeted and immune-based therapies was associated with significant improvements in use and timing of palliative care and hospice, compared with usual practice.

Improving primary palliative care in Scotland: lessons from a mixed methods study.

PubMed

Mason, Bruce; Buckingham, Susan; Finucane, Anne; Hutchison, Peter; Kendall, Marilyn; McCutcheon, Hazel; Porteous, Lorna; Murray, Scott A

2015-12-10

Since 2012, all GP practices across Scotland have been supported to take a systematic approach to end-of-life care, by helping them to identify more patients for palliative care through a Palliative Care Directed Enhanced Service (DES). We aimed to understand the impact of this initiative. Routine quantitative data from the 2012/13, and 2013/14 DES were collected from regional health boards, analysed and discussed. Qualitative data were collected from a sample of 2012/13 DES returns and analysed using Thematic Analysis. Data were received from 512 practices in nine Scottish Health boards for the 2012-13 DES and 638 practices in 11 Health boards for 2013-14. A sample of 90 of the returns for 2012-13 was selected for qualitative analysis. In 2012-13, 72 % of patients who died of cancer were listed on the palliative care register (PCR) before death while 27 % of patients who died as a result of non-malignant conditions were listed on the PCR. In 2013-14, cancer identification remained the same but identification of people dying with other long-term conditions had improved to 32.5 %. We identified several key issues needed to improve palliative care in the community. The need for training to identify patients with palliative care needs (particularly non-cancer); communication skills training; improvements in sharing information across the NHS; under-resource of and lack of coordination with district nurses; improvements in information technology; and tools for working with enlarged palliative care registers. The DES helped more patients with long-term conditions (LTC) receive generalist palliative care. Approaching generalist palliative care as anticipatory care could facilitate communication between GPs and patients/families and remove some barriers to early identification of palliative care needs. Improvement of information technology and use of identification tools like the SPICT™ may improve professionals' communication with each other and help may make identification and management of patients easier.

Palliative care for older people – exploring the views of doctors and nurses from different fields in Germany

PubMed Central

Brueckner, Torben; Schumacher, Martin; Schneider, Nils

2009-01-01

Background Providing appropriate palliative care for older people is a major task for health care systems worldwide, and up to now it has also been one of the most neglected. Focusing on the German health care system, we sought to explore the attitudes of health professionals regarding their understanding of palliative care for older patients and its implementation. Methods In a qualitative study design, focus groups were established consisting of general practitioners, geriatricians, palliative care physicians, palliative care nurses and general nurses (a total of 29 participants). The group discussions were recorded, transcribed, coded and analysed using the methodological approach of Qualitative Description. Results Deficiencies in teamwork and conflicting role definitions between doctors and nurses and between family practitioners and medical specialists were found to be central problems affecting the provision of appropriate palliative care for older people. It was emphasized that there are great advantages to family doctors playing a leading role, as they usually have the longest contacts to the patients. However, the professional qualifications of family doctors were to some extent criticized. The general practitioners for their part criticized the increasing specialization on the field of palliative care. All groups complained that the German compensation system gives insufficient consideration to the time-consuming care of older patients, and about excessive bureaucracy. Conclusion General practitioners are the central health professionals in the delivery of palliative care for older people. They should however be encouraged to involve specialized services such as palliative care teams where necessary. With the German health care reform of 2007, a legal framework has been created that allows for this. As far as its realization is concerned, it must be ensured that the spotlight remains on the needs of the patients and not on policy conflicts and rivalries between health care professionals. Older people might particularly benefit if "talking" medicine and time-consuming care were properly catered for, financially and organizationally, in the health care system. PMID:19549336

The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice

PubMed Central

2014-01-01

Background The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). Methods A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. Results The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. Conclusion This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium. PMID:24684942

How are physicians delivering palliative care? A population-based retrospective cohort study describing the mix of generalist and specialist palliative care models in the last year of life.

PubMed

Brown, Catherine Rl; Hsu, Amy T; Kendall, Claire; Marshall, Denise; Pereira, Jose; Prentice, Michelle; Rice, Jill; Seow, Hsien-Yeang; Smith, Glenys A; Ying, Irene; Tanuseputro, Peter

2018-06-01

To enable coordinated palliative care delivery, all clinicians should have basic palliative care skill sets ('generalist palliative care'). Specialists should have skills for managing complex and difficult cases ('specialist palliative care') and co-exist to support generalists through consultation care and transfer of care. Little information exists about the actual mixes of generalist and specialist palliative care. To describe the models of physician-based palliative care services delivered to patients in the last 12 months of life. This is a population-based retrospective cohort study using linked health care administrative data. Physicians providing palliative care services to a decedent cohort in Ontario, Canada. The decedent cohort consisted of all adults (18+ years) who died in Ontario, Canada between April 2011 and March 2015 ( n = 361,951). We describe four major models of palliative care services: (1) 53.0% of decedents received no physician-based palliative care, (2) 21.2% received only generalist palliative care, (3) 14.7% received consultation palliative care (i.e. care from both specialists and generalists), and (4) 11.1% received only specialist palliative care. Among physicians providing palliative care ( n = 11,006), 95.3% had a generalist palliative care focus and 4.7% a specialist focus; 74.2% were trained as family physicians. We examined how often a coordinated palliative care model is delivered to a large decedent cohort and identified that few actually received consultation care. The majority of care, in both the palliative care generalist and specialist models, was delivered by family physicians. Further research should evaluate how different models of care impact patient outcomes and costs.

Compared to Palliative Care, Working in Intensive Care More than Doubles the Chances of Burnout: Results from a Nationwide Comparative Study

PubMed Central

Teixeira, Carla Margarida; Carvalho, Ana Sofia; Hernández-Marrero, Pablo

2016-01-01

Introduction Professionals working in intensive and palliative care units, hence caring for patients at the end-of-life, are at risk of developing burnout. Workplace conditions are determinant factors to develop this syndrome among professionals providing end-of-life care. Objectives To identify and compare burnout levels between professionals working in intensive and palliative care units; and to assess which workplace experiences are associated with burnout. Methods A nationwide, multicentre quantitative comparative survey study was conducted in Portugal using the following instruments: Maslach Burnout Inventory–Human Services Survey, Questionnaire of workplace experiences and ethical decisions, and Questionnaire of socio-demographic and professional characteristics. A total of 355 professionals from 10 intensive care and 9 palliative care units participated in the survey. A series of univariate and multivariate logistic regression analyses were performed; odds ratio sidelong with 95% confidence intervals were calculated. Results 27% of the professionals exhibited burnout. This was more frequent in intensive care units (OR = 2.525, 95% CI: 1.025–6.221, p = .006). Univariate regression analyses showed that higher burnout levels were significantly associated with conflicts, decisions to withhold/withdraw treatment, and implementing palliative sedation. When controlling for socio-demographic and educational characteristics, and setting (intensive care units versus palliative care units), higher burnout levels were significantly and positively associated with experiencing conflicts in the workplace. Having post-graduate education in intensive/palliative care was significantly but inversely associated to higher burnout levels. Conclusions Compared to palliative care, working in intensive care units more than doubled the likelihood of exhibiting burnout. Experiencing conflicts (e.g., with patients and/or families, intra and/or inter-teams) was the most significant determinant of burnout and having post-graduate education in intensive/palliative care protected professionals from developing this syndrome. This highlights the need for promoting empowering workplace conditions, such as team empowerment and conflict management. Moreover, findings suggest the need for implementing quality improvement strategies and organizational redesign strategies aimed at integrating the philosophy, principles and practices of palliative care in intensive care units. PMID:27612293

Pediatric Palliative Care at a Glance

MedlinePlus

® ™ ® Pediatric Palliative Care at a Glance A child’s serious illness affects the entire family. Pediatric palliative (pal-lee-uh-tiv) care can support ... extra support, palliative care can help. What is pediatric palliative care? Pediatric palliative care is supportive care ...

An Australian investigation of emotional work, emotional well-being and professional practice: an emancipatory inquiry.

PubMed

Rose, Jayln; Glass, Nel

2010-05-01

This study set out to explore the relationship between emotional work, emotional well-being and professional practice of generalist community health nurses who provided palliative care to clients living at home. Research suggests that palliative care practice is emotionally demanding and at times challenging. Whilst nurses find their palliative practice a source of job satisfaction the associated stresses can impact on nurses emotional well-being. A qualitative emancipatory methodology informed this study. Semi-structured interviews/storytelling and reflective journaling were the two methods applied. Sixteen community health nurses including the researcher participated. Thematic analysis of the data was undertaken. The concept of emotional well-being is associated with nurses' feelings of being balanced or out of balance. There is a pervasive interconnectedness between emotional work, emotional well-being and professional practice that is influenced by factors such as organisational and workplace issues; communication with health professionals, professional boundaries; education and professional development. Three major interwoven themes emerged highlighting that palliative care provision was demanding and rewarding, yet dependent on the nurse's comfortability within practice. Self-care is also important to the generalist nurses and strategies to enhance well-being include healthy lifestyle choices, debriefing, self-validation, assertiveness and emotional support. Emotional well-being is complex and multifaceted. The value of emotional well-being to professional practice is important. Palliative care provision is associated with demands, rewards and comfortability. It is essential that attention be given to the experiences of generalist community health nurses who engage in palliative care provision. As the demand for community palliative care increases, the issues that limit and enhance the emotional well-being of generalist palliative care nurses' become critical. The findings have international relevance to generalist and specialist palliative care nurses, academics and researchers alike.

An instrument to measure nurses' knowledge in palliative care: Validation of the Spanish version of Palliative Care Quiz for Nurses

PubMed Central

2017-01-01

Background Palliative care is nowadays essential in nursing care, due to the increasing number of patients who require attention in final stages of their life. Nurses need to acquire specific knowledge and abilities to provide quality palliative care. Palliative Care Quiz for Nurses is a questionnaire that evaluates their basic knowledge about palliative care. The Palliative Care Quiz for Nurses (PCQN) is useful to evaluate basic knowledge about palliative care, but its adaptation into the Spanish language and the analysis of its effectiveness and utility for Spanish culture is lacking. Purpose To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. Method The Palliative Care Quiz for Nurses-Spanish Version (PCQN-SV) was obtained from a process including translation, back-translation, comparison with versions in other languages, revision by experts, and pilot study. Content validity and reliability of questionnaire were analyzed. Difficulty and discrimination indexes of each item were also calculated according to Item Response Theory (IRT). Findings Adequate internal consistency was found (S-CVI = 0.83); Cronbach's alpha coefficient of 0.67 and KR-20 test result of 0,72 reflected the reliability of PCQN-SV. The questionnaire had a global difficulty index of 0,55, with six items which could be considered as difficult or very difficult, and five items with could be considered easy or very easy. The discrimination indexes of the 20 items, show us that eight items are good or very good while six items are bad to discriminate between good and bad respondents. Discussion Although in shows internal consistency, reliability and difficulty indexes similar to those obtained by versions of PCQN in other languages, a reformulation of the items with lowest content validity or discrimination indexes and those showing difficulties with their comprehension is an aspect to take into account in order to improve the PCQN-SV. Conclusion The PCQN-SV is a useful Spanish language instrument for measuring Spanish nurses’ knowledge in palliative care and it is adequate to establish international comparisons. PMID:28545037

What is the cost of palliative care in the UK? A systematic review.

PubMed

Gardiner, Clare; Ryan, Tony; Gott, Merryn

2018-04-13

Little is known about the cost of a palliative care approach in the UK, and there is an absence of robust activity and unit cost data. The aim of this study was to review evidence on the costs of specialist and generalist palliative care in the UK, and to explore different approaches used for capturing activity and unit cost data. A systematic review with narrative synthesis. Four electronic databases were searched for empirical literature on the costs of a palliative care approach in the UK, and a narrative method was used to synthesise the data. Ten papers met our inclusion criteria. The studies displayed significant variation in their estimates of the cost of palliative care, therefore it was not possible to present an accurate aggregate cost of palliative care in the UK. The majority of studies explored costs from a National Health Service perspective and only two studies included informal care costs. Approaches to estimating activity and costs varied. Particular challenges were noted with capturing activity and cost data for hospice and informal care. The data are limited, and the heterogeneity is such that it is not possible to provide an aggregate cost of palliative care in the UK. It is notable that the costs of hospice care and informal care are often neglected in economic studies. Further work is needed to address methodological and practical challenges in order to gain a more complete understanding of the costs of palliative care. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

How much does care in palliative care wards cost in Poland?

PubMed Central

Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika

2016-01-01

Introduction The main task of palliative care units is to provide a dignified life for people with advanced progressive chronic disease through appropriate symptom management, communication between medical specialists and the patient and his family, as well as the coordination of care. Many palliative care units struggle with low incomes from the National Health Fund (NHF), which causes serious economic problems. The aim of the study was to estimate of direct and administrative costs of care and the actual cost per patient per day in selected palliative care units and comparison of the results to the valuation of the NHF. Material and methods The study of the costs of hospitalization of 175 patients was conducted prospectively in five palliative care units (PCUs). The costs directly associated with care were recorded on the specially prepared forms in each unit and also personnel and administrative costs provided by the accounting departments. Results The total costs of analyzed units amounted to 209 002 EUR (898 712 PLN), while the payment for palliative care services from the NHF amounted to 126 010 EUR (541 844 PLN), which accounted for only 60% of the costs incurred by the units. The average cost per person per day of hospitalization, calculated according to the actual duration of hospitalization in the unit, was 83 EUR (357 PLN), and the average payment from the NHF was 52.8 EUR (227 PLN). Underpayment per person per day was approximately 29.2 EUR (125 PLN). Conclusions The study showed a significant difference between the actual cost of palliative care units and the level of refund from the NHF. Based on the analysis of costs, the application has been submitted to the NHF to change the reimbursement amount of palliative care services in 2013. PMID:27186194

Palliative care content on cancer center websites.

PubMed

Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory

2018-03-01

Professional guidelines recommend that palliative care begin early in advanced cancer management, yet integration of palliative and cancer care remains suboptimal. Cancer centers may miss opportunities to provide palliative care information online. In this study, we described the palliative care content on cancer center websites. We conducted a systematic content analysis of 62 National Cancer Institute- (NCI) designated cancer center websites. We assessed the content of center homepages and analyzed search results using the terms palliative care, supportive care, and hospice. For palliative and supportive care webpages, we assessed services offered and language used to describe care. Two researchers analyzed all websites using a standardized coding manual. Kappa values ranged from 0.78 to 1. NCI-designated cancer center homepages presented information about cancer-directed therapy (61%) more frequently than palliative care (5%). Ten percent of cancer centers had no webpage with palliative care information for patients. Among centers with information for patients, the majority (96%) defined palliative or supportive care, but 30% did not discuss delivery of palliative care alongside curative treatment, and 14% did not mention provision of care early in the disease process. Cancer center homepages rarely mention palliative care services. While the majority of centers have webpages with palliative care content, they sometimes omit information about early use of care. Improving accessibility of palliative care information and increasing emphasis on early provision of services may improve integration of palliative and cancer care.

Exploring the meaning and practice of self-care among palliative care nurses and doctors: a qualitative study.

PubMed

Mills, Jason; Wand, Timothy; Fraser, Jennifer A

2018-04-18

Self-care practice within the palliative care workforce is often discussed, yet seemingly under-researched. While palliative care professionals are required to implement and maintain effective self-care strategies, there appears little evidence to guide them. Moreover, there is an apparent need to clarify the meaning of self-care in palliative care practice. This paper reports qualitative findings within the context of a broader mixed-methods study. The aim of the present study was to explore the meaning and practice of self-care as described by palliative care nurses and doctors. A purposive sample of 24 palliative care nurses and doctors across Australia participated in semi-structured, in-depth interviews. Interviews were digitally recorded and transcribed prior to inductive qualitative content analysis, supported by QSR NVivo data management software. Three overarching themes emerged from the analysis: (1) A proactive and holistic approach to promoting personal health and wellbeing to support professional care of others; (2) Personalised self-care strategies within professional and non-professional contexts; and (3) Barriers and enablers to self-care practice. The findings of this study provide a detailed account of the context and complexity of effective self-care practice previously lacking in the literature. Self-care is a proactive, holistic, and personalised approach to the promotion of health and wellbeing through a variety of strategies, in both personal and professional settings, to enhance capacity for compassionate care of patients and their families. This research adds an important qualitative perspective and serves to advance knowledge of both the context and effective practice of self-care in the palliative care workforce.

Children’s palliative care now! Highlights from the second ICPCN conference on children’s palliative care, 18–21 May 2016, Buenos Aires, Argentina

PubMed Central

Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J

2016-01-01

The International Children’s Palliative Care Network held its second international conference on children’s palliative care in Buenos Aires, Argentina, from the 18th–21st May 2016. The theme of the conference was ‘Children’s Palliative Care…. Now!’ emphasising the need for palliative care for children now, as the future will be too late for many of them. Six pre-conference workshops were held, addressing issues connected to pain assessment and management, adolescent palliative care, ethics and decision-making, developing programmes, the basics of children’s palliative care, and hidden aspects of children’s palliative care. The conference brought together 410 participants from 40 countries. Plenary, concurrent, and poster presentations covered issues around the status of children’s palliative care, genetics, perinatal and neonatal palliative care, the impact of children’s palliative care and the experiences of parents and volunteers, palliative care as a human right, education in children’s palliative care, managing complex pain in children, spiritual care and when to initiate palliative care. The ‘Big Debate’ explored issues around decision-making and end of life care in children, and gave participants the opportunity to explore a sensitive and thought provoking topic. At the end of the conference, delegates were urged to sign the Commitment of Buenos Aires which called for governments to implement the WHA resolution and ensure access to palliative care for neonates, children and their families, and also commits us as palliative care providers to share all that we can and collaborate with each other to achieve the global vision of palliative care for all children who need it. The conference highlighted the ongoing issues in children’s palliative care and participants were continually challenged to ensure that children can access palliative care NOW. PMID:27610193

Palliative care for HIV in the era of antiretroviral therapy availability: perspectives of nurses in Lesotho

PubMed Central

Kell, Megan E; Walley, John D

2009-01-01

Background Southern Africa is disproportionately affected by the HIV/AIDS epidemic. In Lesotho 23% of adults are HIV-positive, and only 26% of those in need are accessing antiretroviral treatment (ART). Consequently, about 18,000 people die from AIDS each year. In this situation, palliative care is needed towards the end of life, but is also recommended throughout the HIV disease trajectory. The World Health Organisation (WHO) has produced the Integrated Management of Adolescent and Adult Illness (IMAI) guidelines, which includes a palliative care guidebook (as well as acute and chronic ART guidebooks). IMAI aims to facilitate the implementation of integrated HIV/AIDS care in resource-poor areas. The opinions of health workers towards this integrated approach to care and the use of IMAI has not been considered in previous research studies. This paper therefore aims to address some of these issues. Methods Semi-structured interviews were conducted with six key informants and ten nurses in Lesotho. The interviews were transcribed verbatim and analysed using content thematic analysis. Results Many nurses described palliative care as synonymous with chronic care and felt that palliative care is necessary for HIV-positive patients despite the introduction of ART. It was thought that the approach taken should be holistic and integrated throughout the disease trajectory. Pain management was noted to be a particular area of need for palliative care, and it was suggested that this could be improved in Lesotho. The IMAI guidelines were thought to be useful, but knowledge of the palliative care booklet was limited. Conclusion Palliative care remains necessary for HIV despite the increasing availability of ART. However, it is currently significantly lacking in Lesotho and many other sub-Saharan African countries. Greater understanding of palliative care amongst health workers is required, as well as strong political will from the Ministry of Health. The IMAI guidelines are a useful tool for holistic HIV care, including palliative care, but they need to be used more effectively. As ART is becoming increasingly available worldwide, the complex chronic care issues for patients with HIV/AIDS should not be neglected. PMID:19682391

Spiritual Concerns in Hindu Cancer Patients Undergoing Palliative Care: A Qualitative Study

PubMed Central

Simha, Srinagesh; Noble, Simon; Chaturvedi, Santosh K

2013-01-01

Aims: Spiritual concerns are being identified as important components of palliative care. The aim of this study was to explore the nature of spiritual concerns in cancer patients undergoing palliative care in a hospice in India. Materials and Methods: The methodology used was a qualitative method: Interpretive phenomenological analysis. A semi-structured interview guide was used to collect data, based on Indian and western literature reports. Certain aspects like karma and pooja, relevant to Hindus, were included. Theme saturation was achieved on interviewing 10 participants. Results: The seven most common spiritual concerns reported were benefit of pooja, faith in God, concern about the future, concept of rebirth, acceptance of one's situation, belief in karma, and the question Why me? No participant expressed four of the concerns studied: Loneliness, need of seeking forgiveness from others, not being remembered later, and religious struggle. Conclusions: This study confirms that there are spiritual concerns reported by patients receiving palliative care. The qualitative descriptions give a good idea about these experiences, and how patients deal with them. The study indicates the need for adequate attention to spiritual aspects during palliative care. PMID:24049350

Improving the organization of palliative care: identification of barriers and facilitators in five European countries.

PubMed

van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Brouwer, Frederike; Meiland, Franka; Iliffe, Steve; Davies, Nathan; Leppert, Wojciech; Jaspers, Birgit; Mariani, Elena; Sommerbakk, Ragni; Vissers, Kris; Engels, Yvonne

2014-10-16

Interventions to improve palliative care encounter challenges beyond the usual implementation problems because of palliative care's complex and changing character. In this study, we explored barriers and facilitators faced by health-care professionals in five European countries (England, Germany, Italy, Norway and the Netherlands) with regard to improving the organization of their palliative care service. Semi-structured individual and focus group interviews were conducted with purposefully selected health-care professionals. The constant comparative method was used to analyse the data. Professionals working in hospitals, hospices, nursing homes and primary care facilities who provide palliative care to adult patients were interviewed (n =40) or participated in ten focus group interviews (n =59). Barriers and facilitators were inductively grouped into 16 categories and arranged into five themes: innovation, individual professional level, group dynamics, organizational context and local political-economic context. Although the barriers and facilitators identified differed in scope, context, strength and provenance, they were shared by professionals from different European countries. This study identified barriers and facilitators to organizational change in palliative care. Some of these barriers and facilitators were experienced by professionals in almost all countries and are therefore prerequisites to change. Understanding the barriers to and facilitators of change will help tailor organizational improvements to the needs of individuals and organizations.

Co-creating possibilities for patients in palliative care to reach vital goals--a multiple case study of home-care nursing encounters.

PubMed

Bergdahl, Elisabeth; Benzein, Eva; Ternestedt, Britt-Marie; Elmberger, Eva; Andershed, Birgitta

2013-12-01

The patient's home is a common setting for palliative care. This means that we need to understand current palliative care philosophy and how its goals can be realized in home-care nursing encounters (HCNEs) between the nurse, patient and patient's relatives. The existing research on this topic describes both a negative and a positive perspective. There has, however, been a reliance on interview and descriptive methods in this context. The aim of this study was to explore planned HCNEs in palliative care. The design was a multiple case study based on observations. The analysis includes a descriptive and an explanation building phase. The results show that planned palliative HCNEs can be described as a process of co-creating possibilities for the patient to reach vital goals through shared knowledge in a warm and caring atmosphere, based on good caring relations. However, in some HCNEs, co-creation did not occur: Wishes and needs were discouraged or made impossible and vital goals were not reached for the patients or their relatives. Further research is needed to understand why. The co-creative process presented in this article can be seen as a concretization of the palliative care ideal of working with a person-centered approach. © 2013 John Wiley & Sons Ltd.

Funding models in palliative care: Lessons from international experience

PubMed Central

Groeneveld, E Iris; Cassel, J Brian; Bausewein, Claudia; Csikós, Ágnes; Krajnik, Malgorzata; Ryan, Karen; Haugen, Dagny Faksvåg; Eychmueller, Steffen; Gudat Keller, Heike; Allan, Simon; Hasselaar, Jeroen; García-Baquero Merino, Teresa; Swetenham, Kate; Piper, Kym; Fürst, Carl Johan; Murtagh, Fliss EM

2017-01-01

Background: Funding models influence provision and development of palliative care services. As palliative care integrates into mainstream health care provision, opportunities to develop funding mechanisms arise. However, little has been reported on what funding models exist or how we can learn from them. Aim: To assess national models and methods for financing and reimbursing palliative care. Design: Initial literature scoping yielded limited evidence on the subject as national policy documents are difficult to identify, access and interpret. We undertook expert consultations to appraise national models of palliative care financing in England, Germany, Hungary, Republic of Ireland, New Zealand, The Netherlands, Norway, Poland, Spain, Sweden, Switzerland, the United States and Wales. These represent different levels of service development and a variety of funding mechanisms. Results: Funding mechanisms reflect country-specific context and local variations in care provision. Patterns emerging include the following: Provider payment is rarely linked to population need and often perpetuates existing inequitable patterns in service provision. Funding is frequently characterised as a mixed system of charitable, public and private payers. The basis on which providers are paid for services rarely reflects individual care input or patient needs. Conclusion: Funding mechanisms need to be well understood and used with caution to ensure best practice and minimise perverse incentives. Before we can conduct cross-national comparisons of costs and impact of palliative care, we need to understand the funding and policy context for palliative care in each country of interest. PMID:28156188

Referral patterns and proximity to palliative care inpatient services by level of socio-economic disadvantage. A national study using spatial analysis

PubMed Central

2012-01-01

Background A range of health outcomes at a population level are related to differences in levels of social disadvantage. Understanding the impact of any such differences in palliative care is important. The aim of this study was to assess, by level of socio-economic disadvantage, referral patterns to specialist palliative care and proximity to inpatient services. Methods All inpatient and community palliative care services nationally were geocoded (using postcode) to one nationally standardised measure of socio-economic deprivation – Socio-Economic Index for Areas (SEIFA; 2006 census data). Referral to palliative care services and characteristics of referrals were described through data collected routinely at clinical encounters. Inpatient location was measured from each person’s home postcode, and stratified by socio-economic disadvantage. Results This study covered July – December 2009 with data from 10,064 patients. People from the highest SEIFA group (least disadvantaged) were significantly less likely to be referred to a specialist palliative care service, likely to be referred closer to death and to have more episodes of inpatient care for longer time. Physical proximity of a person’s home to inpatient care showed a gradient with increasing distance by decreasing levels of socio-economic advantage. Conclusion These data suggest that a simple relationship of low socioeconomic status and poor access to a referral-based specialty such as palliative care does not exist. Different patterns of referral and hence different patterns of care emerge. PMID:23176397

The perceived impact of public involvement in palliative care in a provincial palliative care network in the Netherlands: a qualitative study.

PubMed

Haarsma, Frederike; Moser, Albine; Beckers, Manon; van Rijswijk, Henk; Stoffers, Esther; Beurskens, Anna

2015-12-01

Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein's involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process. © 2014 John Wiley & Sons Ltd.

Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast

PubMed Central

Monnery, Daniel; Reid, Victoria Louise; Chapman, Laura

2017-01-01

Objectives Podcasts have the potential to facilitate communication about palliative care with researchers, policymakers and the public. Some podcasts about palliative care are available; however, this is not reflected in the academic literature. Further study is needed to evaluate the utility of podcasts to facilitate knowledge-transfer about subjects related to palliative care. The aims of this paper are to (1) describe the development of a palliative care podcast according to international recommendations for podcast quality and (2) conduct an analysis of podcast listenership over a 14-month period. Methods The podcast was designed according to internationally agreed quality indicators for medical education podcasts. The podcast was published on SoundCloud and was promoted via social media. Data were analysed for frequency of plays and geographical location between January 2015 and February 2016. Results 20 podcasts were developed which were listened to 3036 times (an average of 217 monthly plays). The Rich Site Summary feed was the most popular way to access the podcast (n=1937; 64%). The mean duration of each podcast was 10 min (range 3–21 min). The podcast was listened to in 68 different countries and was most popular in English-speaking areas, of which the USA (n=1372, 45.2%), UK (n=661, 21.8%) and Canada (n=221, 7.3%) were most common. Conclusions A palliative care podcast is a method to facilitate palliative care discussion with global audience. Podcasts offer the potential to develop educational content and promote research dissemination. Future work should focus on content development, quality metrics and impact analysis, as this form of digital communication is likely to increase and engage wider society. PMID:27580942

Developing a web-based information resource for palliative care: an action-research inspired approach

PubMed Central

Street, Annette F; Swift, Kathleen; Annells, Merilyn; Woodruff, Roger; Gliddon, Terry; Oakley, Anne; Ottman, Goetz

2007-01-01

Background General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website [1]. Method The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166). Results Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers). Conclusion Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach. PMID:17854509

The contribution of undergraduate palliative care education: does it influence the clinical patient's care?

PubMed

Centeno, Carlos; Rodríguez-Núñez, Alfredo

2015-12-01

The aim of this 2-year systematic review is to understand how learner assessment and curriculum evaluation of education in palliative care is being undertaken and to examine whether current undergraduate education influences the clinical patient's care. Almost half of the 30 studies reviewed used a qualitative approach to evaluate learning experiences. Only three of them were controlled studies and a further one was a cohort study.When students openly express themselves, they agree that there is 'something' deep as regards the core or the essence of medical practice or nursing. They feel that they become better professionals and better prepared for the patients, not only in terms of end of life care, but also as regards care, irrespective of the phase of the disease.The inclusion of palliative care in undergraduate education is a way of providing knowledge, skill, and competences about palliative care (especially communication) and also improving attitudes toward caring in advanced disease and at the end of life. Different methods of experiential learning, even brief experiences, which bring students into close contact with palliative care clinical cases or patients, are providing better results. From research studies, there is only indirect evidence that palliative care training at university leads to better clinical care of patients. In the future, long-term cohort or controlled studies might answer that question.

Self-Care in Palliative Care Nursing and Medical Professionals: A Cross-Sectional Survey.

PubMed

Mills, Jason; Wand, Timothy; Fraser, Jennifer A

2017-06-01

Self-care is an important consideration for palliative care professionals. To date, few details have been recorded about the nature or uptake of self-care practices in the palliative care workforce. As part of a broader mixed methods study, this article reports findings from a national survey of nurses and doctors. The objective of this study was to examine perceptions, education, and practices relating to self-care among palliative care nursing and medical professionals. A cross-sectional survey using REDCap software was conducted between April and May 2015. Perceived importance of self-care, self-care education and planning, and self-care strategies most utilized were explored. Descriptive statistics were calculated and content analysis used to identify domains of self-care. Three hundred seventy-two palliative care nursing and medical professionals practicing in Australia. Most respondents regarded self-care as very important (86%). Some rarely practised self-care and less than half (39%) had received training in self-care. Physical self-care strategies were most commonly reported, followed closely by social self-care and inner self-care. Self-care plans had been used by a small proportion of respondents (6%) and over two-thirds (70%) would consider using self-care plans if training could be provided. Self-care is practised across multiple health related domains, with physical self-care strategies used most frequently. Australian palliative care nurses and doctors recognize the importance of self-care practice, but further education and training are needed to increase their understanding of, and consistency in, using effective self-care strategies. These findings carry implications for professional practice and future research.

Lay and professional stakeholder involvement in scoping palliative care issues: Methods used in seven European countries.

PubMed

Brereton, Louise; Ingleton, Christine; Gardiner, Clare; Goyder, Elizabeth; Mozygemba, Kati; Lysdahl, Kristin Bakke; Tummers, Marcia; Sacchini, Dario; Leppert, Wojciech; Blaževičienė, Aurelija; van der Wilt, Gert Jan; Refolo, Pietro; De Nicola, Martina; Chilcott, James; Oortwijn, Wija

2017-02-01

Stakeholders are people with an interest in a topic. Internationally, stakeholder involvement in palliative care research and health technology assessment requires development. Stakeholder involvement adds value throughout research (from prioritising topics to disseminating findings). Philosophies and understandings about the best ways to involve stakeholders in research differ internationally. Stakeholder involvement took place in seven countries (England, Germany, Italy, Lithuania, the Netherlands, Norway and Poland). Findings informed a project that developed concepts and methods for health technology assessment and applied these to evaluate models of palliative care service delivery. To report on stakeholder involvement in the INTEGRATE-HTA project and how issues identified informed project development. Using stakeholder consultation or a qualitative research design, as appropriate locally, stakeholders in seven countries acted as 'advisors' to aid researchers' decision making. Thematic analysis was used to identify key issues across countries. A total of 132 stakeholders (82 professionals and 50 'lay' people) aged ⩾18 participated in individual face-to-face or telephone interviews, consultation meetings or focus groups. Different stakeholder involvement methods were used successfully to identify key issues in palliative care. A total of 23 issues common to three or more countries informed decisions about the intervention and comparator of interest, sub questions and specific assessments within the health technology assessment. Stakeholders, including patients and families undergoing palliative care, can inform project decision making using various involvement methods according to the local context. Researchers should consider local understandings about stakeholder involvement as views of appropriate and feasible methods vary. Methods for stakeholder involvement, especially consultation, need further development.

[ACTUAL QUESTIONS OF TEACHING PALLIATIVE CARE IN A SYSTEM OF FURTHER PROFESSIONAL EDUCATION.

PubMed

Sizova, Zh M; Nevzorova, D V; Beloborodova, A V; Abuzarova, G R; Sonkina, A A; Tyazhelnikov, A A; Zakharova, V L

2016-07-01

In response to the introduction ofpalliative care as a new kind of medical care in Russian Federation (Federal law No.323 from 21.11.2011), Russian Federation Health Ministry has taskedfurther educational institutions with teaching doctors about this new kind of care. I.M Sechenov First Moscow State Medical University has answered this plea in 2015 by introducing a new course focused on palliative care. The program of education was prepared in accordance with rec- ommendations of World Health Organization (WHO) and European Association for Palliative Care (EAPC). A special attention was paid to the pain relief communication skills and organization ofpalliative care for adults in ambulatory and stationary treatment. The program integrates different teaching methods including eLearning, trainings on pain relief and practical trainings on communication skills for interaction with palliative patients and their relatives using the technology of .

The views of patients with brain cancer about palliative care: a qualitative study.

PubMed

Vierhout, M; Daniels, M; Mazzotta, P; Vlahos, J; Mason, W P; Bernstein, M

2017-12-01

Palliative care, a specialty aimed at providing optimal care to patients with life-limiting and chronic conditions, has several benefits. Although palliative care is appropriate for neurosurgical conditions, including brain cancer, few studies have examined the views of brain cancer patients about palliative care. We aimed to explore the thoughts of brain cancer patients about palliative care, their opinions about early palliative care, and their preferred care setting. Semi-structured interviews and the qualitative research methodologies of grounded theory were used to explore perceptions of palliative care on the part of 39 brain cancer outpatients. Seven overarching actions emerged: ■Patients would prefer to receive palliative care in the home.■Increased time with caregivers and family are the main appeals of home care.■Patients express dissatisfaction with brief and superficial interactions with health care providers.■Patients believe that palliative care can contribute to their emotional well-being.■Patients are open to palliative care if they believe that it will not diminish optimism.■There is a preconceived idea that palliative care is directly linked to active dying, and that supposed link generates fear in some patients.■Patients prefer to be educated about palliative care as an option early in their illness, even if they are fearful of it. Overall, when educated about the true meaning of palliative care, most patients express interest in accessing palliative care services. Although the level of fear concerning palliative care varies in patients, most recognize the associated benefits.

The Costs of Waiting: Implications of the Timing of Palliative Care Consultation among a Cohort of Decedents at a Comprehensive Cancer Center.

PubMed

Scibetta, Colin; Kerr, Kathleen; Mcguire, Joseph; Rabow, Michael W

2016-01-01

Palliative care is recommended along with oncologic care for patients with advanced cancer. However, there are limited data about how the timing of palliative care affects quality and costs. Comparison of health care utilization and care quality for patients with cancer who died having received early versus late palliative care. Analysis of cancer registry, administrative, and billing databases. Patients with cancer who died having received specialty palliative care consultation. Comparing early (more than 90 days prior to death) versus late (less than 90 days prior to death) palliative care, outcome measures included rates of health care utilization and health care costs. Among 922 decedents, 297 (32.2%) had palliative care referrals, with 93 (10.1%) receiving early referrals and 204 (22.1%) late referrals. Compared to patients receiving late palliative care, early palliative care patients had lower rates of inpatient (33% versus 66%, p < 0.01), ICU (5% versus 20%, p < 0.01), and ED utilization (34% versus 54%, p = 0.04) in the last month of life. Direct costs of inpatient care in the last 6 months of life for patients with early palliative care were lower compared to late palliative care ($19,067 versus $25,754, p < 0.01), while direct outpatient costs were similar ($13,040 versus $11,549, p = 0.85). Early palliative care was predominantly delivered in the outpatient setting (84%) while late palliative care was mostly delivered in the hospital (82%). Early palliative care is associated with less intensive medical care, improved quality outcomes, and cost savings at the end of life for patients with cancer. Despite recommendations that early palliative care be offered to all patients with metastatic cancer, palliative care services remain underutilized.

Branding Palliative Care Units by Avoiding the Terms "Palliative" and "Hospice".

PubMed

Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term "palliative care" has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term "supportive care" instead of "palliative care" in naming palliative care units has been proposed in several studies. In Taiwan, terms other than "palliative" and "hospice" are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms "palliative" and "hospice" in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms "palliative" and "hospice" in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term "palliative," while 25.2% (n = 14) included the term "hospice." Religiously affiliated hospitals were less likely to use the terms "palliative" and "hospice" (χ 2 = 11.461, P = .001). There was also a lower prevalence of use of the terms "palliative" and "hospice" for naming palliative care units in private hospitals than in public hospitals (χ 2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms "palliative" and "hospice" in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon.

Early Integration of Palliative Care in Oncology Practice: Results of the Italian Association of Medical Oncology (AIOM) Survey

PubMed Central

Zagonel, Vittorina; Torta, Riccardo; Franciosi, Vittorio; Brunello, Antonella; Biasco, Guido; Cattaneo, Daniela; Cavanna, Luigi; Corsi, Domenico; Farina, Gabriella; Fioretto, Luisa; Gamucci, Teresa; Lanzetta, Gaetano; Magarotto, Roberto; Maltoni, Marco; Mastromauro, Cataldo; Melotti, Barbara; Meriggi, Fausto; Pavese, Ida; Piva, Erico; Sacco, Cosimo; Tonini, Giuseppe; Trentin, Leonardo; Ermacora, Paola; Varetto, Antonella; Merlin, Federica; Gori, Stefania; Cascinu, Stefano; Pinto, Carmine

2016-01-01

Background: Early integration of palliative care in oncology practice (“simultaneous care”, SC) has been shown to provide better care resulting in improved quality-of-life and also survival. We evaluated the opinions of Italian Association of Medical Oncology (AIOM) members. Patients and methods: A 37-item questionnaire was delivered to 1119 AIOM members. Main areas covered were: social, ethical, relational aspects of disease and communication, training, research, organizational and management models in SC. Three open questions explored the definition of Quality of Life, Medical Oncologist and Palliative Care. Results: Four hundred and forty-nine (40.1%) medical oncologists returned the questionnaires. Forty-nine percent stated they address non-curability when giving a diagnosis of metastatic tumor, and 43% give the information only to patients who clearly ask for it. Fifty-five percent say the main formative activity in palliative medicine came from attending meetings and 90% agree that specific palliative care training should be part of the core curriculum in oncology. Twenty-two percent stated they consulted guidelines for symptom management, 45% relied upon personal experience and 26% make a referral to a palliative care specialist. Seventy-four percent were in favor of more research in palliative medicine. An integration between Units of Oncology and Palliative Care Services early in the course of advanced disease was advocated by 86%. Diverse and multifaceted definitions were given for the concepts of Quality of Life, Palliative Care and Medical Oncologist. Conclusion: SC is felt as an important task, as well as training of medical oncologists in symptom management and research in this field. PMID:27877212

Volunteer activity in specialist paediatric palliative care: a national survey

PubMed Central

Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L; Scott, Rosalind; Bravery, Ruth; Candy, Bridget

2015-01-01

Objective To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. Method Cross-sectional survey using a web-based questionnaire. Setting UK specialist paediatric palliative care services. Participants Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). Main outcomes Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers’ professional skills and volunteer activities by setting. Results A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16–19 years in 23 services and 23–35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. Conclusions This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers’ contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers’ roles. PMID:24644170

Comparison of legislation, regulations and national health strategies for palliative care in seven European countries (Results from the Europall Research Group): a descriptive study.

PubMed

Van Beek, Karen; Woitha, Kathrin; Ahmed, Nisar; Menten, Johan; Jaspers, Birgit; Engels, Yvonne; Ahmedzai, Sam H; Vissers, Kris; Hasselaar, Jeroen

2013-07-17

According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe.

Informed palliative care in nursing homes through the interRAI Palliative Care instrument: a study protocol based on the Medical Research Council framework.

PubMed

Hermans, Kirsten; Spruytte, Nele; Cohen, Joachim; Van Audenhove, Chantal; Declercq, Anja

2014-12-05

Nursing homes are important locations for palliative care. Through comprehensive geriatric assessments (CGAs), evaluations can be made of palliative care needs of nursing home residents. The interRAI Palliative Care instrument (interRAI PC) is a CGA that evaluates diverse palliative care needs of adults in all healthcare settings. The evaluation results in Client Assessment Protocols (CAPs: indications of problems that need addressing) and Scales (e.g. Palliative Index for Mortality (PIM)) which can be used to design, evaluate and adjust care plans. This study aims to examine the effect of using the interRAI PC on the quality of palliative care in nursing homes. Additionally, it aims to evaluate the feasibility and validity of the interRAI PC. This study covers phases 0, I and II of the Medical Research Council (MRC) framework for designing and evaluating complex interventions, with a longitudinal, quasi-experimental pretest-posttest design and with mixed methods of evaluation. In phase 0, a systematic literature search is conducted. In phase I, the interRAI PC is adapted for use in Belgium and implemented on the BelRAI-website and a practical training is developed. In phase II, the intervention is tested in fifteen nursing homes. Participating nursing homes fill out the interRAI PC during one year for all residents receiving palliative care. Using a pretest-posttest design with quasi-random assignment to the intervention or control group, the effect of the interRAI PC on the quality of palliative care is evaluated with the Palliative care Outcome Scale (POS). Psychometric analysis is conducted to evaluate the predictive validity of the PIM and the convergent validity of the CAP 'Mood' of the interRAI PC. Qualitative data regarding the usability and face validity of the instrument are collected through focus groups, interviews and field notes. This is the first study to evaluate the validity and effect of the interRAI PC in nursing homes, following a methodology based on the MRC framework. This approach improves the study design and implementation and will contribute to a higher generalizability of results. The final result will be a psychometrically evaluated CGA for nursing home residents receiving palliative care. ClinicalTrials.gov NCT02281032. Registered October 30th, 2014.

Development of a set of process and structure indicators for palliative care: the Europall project

PubMed Central

2012-01-01

Background By measuring the quality of the organisation of palliative care with process and structure quality indicators (QIs), patients, caregivers and policy makers are able to monitor to what extent recommendations are met, like those of the council of the WHO on palliative care and guidelines. This will support the implementation of public programmes, and will enable comparisons between organisations or countries. Methods As no European set of indicators for the organisation of palliative care existed, such a set of QIs was developed. An update of a previous systematic review was made and extended with more databases and grey literature. In two project meetings with practitioners and experts in palliative care the development process of a QI set was finalised and the QIs were categorized in a framework, covering the recommendations of the Council of Europe. Results The searches resulted in 151 structure and process indicators, which were discussed in steering group meetings. Of those QIs, 110 were eligible for the final framework. Conclusions We developed the first set of QIs for the organisation of palliative care. This article is the first step in a multi step project to identify, validate and pilot QIs. PMID:23122255

[Palliative care and end-of-life patients in emergency situations. Recommendations on optimization of out-patient care].

PubMed

Wiese, C H R; Vagts, D A; Kampa, U; Pfeiffer, G; Grom, I-U; Gerth, M A; Graf, B M; Zausig, Y A

2011-02-01

At the end of life acute exacerbations of medical symptoms (e.g. dyspnea) in palliative care patients often result in emergency medical services being alerted. The goals of this study were to discuss cooperation between emergency medical and palliative care structures to optimize the quality of care in emergencies involving palliative care patients. For data collection an open discussion of the main topics by experts in palliative and emergency medical care was employed. Main outcome measures and recommendations included responses regarding current practices related to expert opinions and international literature sources. As the essential points of consensus the following recommendations for optimization of care were named: (1) integration of palliative care in the emergency medicine curricula for pre-hospital emergency physicians and paramedics, (2) development of outpatient palliative care, (3) integration of palliative care teams into emergency medical structures, (4) cooperation between palliative and emergency medical care, (5) integration of crisis intervention into outpatient palliative emergency medical care, (6) provision of emergency plans and emergency medical boxes, (7) provision of palliative crisis cards and do not attempt resuscitation (DNAR) orders, (8) psychosocial aspects concerning palliative emergencies and (9) definition of palliative patients and their special situation by the physician responsible for prior treatment. Prehospital emergency physicians are confronted with emergencies in palliative care patients every day. In the treatment of these emergencies there are potentially serious conflicts due to the different therapeutic concepts of palliative medical care and emergency medical services. This study demonstrates that there is a need for regulated criteria for the therapy of palliative patients and patients at the end of life in emergency situations. Overall, more clinical investigations concerning end-of-life care and unresponsive palliative care patients in emergency medical situations are necessary.

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites.

PubMed

Johnston, Bridget; Patterson, Anne; Bird, Lydia; Wilson, Eleanor; Almack, Kathryn; Mathews, Gillian; Seymour, Jane

2018-02-23

The Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these 'Innovation Centres'. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites. The study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014-2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers -Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis. Comparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support. Macmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries

PubMed Central

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-01-01

Background: Integrated palliative care aims at improving coordination of palliative care services around patients’ anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. Aim: To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Design: Qualitative group interview design. Setting/participants: A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses (n = 66; 46%) and physicians (n = 50; 35%). Results: The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Conclusion: Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings. PMID:29436279

Integrated palliative care is about professional networking rather than standardisation of care: A qualitative study with healthcare professionals in 19 integrated palliative care initiatives in five European countries.

PubMed

den Herder-van der Eerden, Marlieke; van Wijngaarden, Jeroen; Payne, Sheila; Preston, Nancy; Linge-Dahl, Lisa; Radbruch, Lukas; Van Beek, Karen; Menten, Johan; Busa, Csilla; Csikos, Agnes; Vissers, Kris; van Gurp, Jelle; Hasselaar, Jeroen

2018-06-01

Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Qualitative group interview design. A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses ( n = 66; 46%) and physicians ( n = 50; 35%). The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.

Palliative Care Development in Mongolia.

PubMed

Davaasuren, Odontuya; Ferris, Frank D

2018-02-01

Since the year 2000, Mongolia has established the foundation measures for a national palliative care program and has made several significant achievements. Systematic reviews and observational studies on palliative care development in Mongolia have taken place over the past 16 years. Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Palliative care is included in the Mongolia's Health Law, Health Insurance Law, Social Welfare Law, National Cancer Control Program, and the National Program for Non-Communicable Diseases, and has approved Palliative Care Standards and Pain Management Guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. Six hospice units in Ulaanbaatar have 50 beds; each of the nine districts and all 21 provinces have up to four to five palliative beds, and there are 36 palliative care units, for a total 190 beds for three million people. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care have been available in Mongolia since 2015. The pharmaceutical company IVCO produces morphine, codeine, pethidine, and oxycodone in Ulaanbaatar. Mongolia has made real progress in integrating palliative care into the health system. Copyright © 2017. Published by Elsevier Inc.

Caring for Life-Limiting Illness in Ethiopia: A Mixed-Methods Assessment of Outpatient Palliative Care Needs.

PubMed

Reid, Eleanor Anderson; Gudina, Esayas Kebede; Ayers, Nicola; Tigineh, Wondimagegnu; Azmera, Yoseph Mamo

2018-05-01

Palliative care aims to reduce physical suffering and the emotional, spiritual, and psychosocial distress of life-limiting illness. Palliative care is a human right, yet there are vast disparities in its provision: of the 40 million people globally in need of palliative care, less than 10% receive it, largely in high-income countries. There is a particular paucity of data on palliative care needs across the spectrum of incurable disease in Ethiopia. The aims of this research were to assess the overall burden of life-limiting illness, the costs associated with life-limiting illness, and barriers to accessing palliative care in Ethiopia. Mixed-methods case-series. One hundred adults (mean age: 43.7 ± 14 years, 64% female) were recruited at three outpatient clinics (oncology, HIV, noncommunicable disease) and hospice patient homes in Ethiopia. Four internationally validated questionnaires were used to assess physical symptoms, psychosocial distress, and disability. In-depth interviews gauged poverty level, costs of care, and end-of-life preferences. Qualitative data were analyzed by thematic content, quantitative data by standard descriptive, frequency and regression analyses. In oncology, 95.5% of the population endorsed moderate or severe pain, while 24% were not prescribed analgesia. Importantly, 80% of the noncommunicable disease population reported moderate or severe pain. The mean psychosocial distress score was 6.4/10. Severe disability was reported in 26% of the population, with mobility most affected. Statistically significant relationships were found between pain and costs, and pain and lack of well-being. Very high costs were reported by oncology patients. Oncology withstanding, the majority of subjects wished to die at home. Oncology patients cited pain control as the top reason they preferred a hospital death. There are extensive unmet palliative care needs in Ethiopia. Untreated pain and high costs of illness are the major contributors to psychosocial distress and financial crisis in this Ethiopian population.

The potential of palliative care for patients with respiratory diseases

PubMed Central

Narsavage, Georgia L.; Chen, Yea-Jyh; Korn, Bettina; Elk, Ronit

2017-01-01

Based on the demonstrated effectiveness of palliative care in the alleviation of symptoms and enhancement of life quality, it is important to incorporate palliative care early in the respiratory disease trajectory. Quality palliative care addresses eight domains that are all patient and family centred. Palliative care interventions in respiratory conditions include management of symptoms such as dyspnoea, cough, haemoptysis, sputum production, fatigue and respiratory secretion management, especially as the end-of-life nears. A practical checklist of activities based on the domains of palliative care can assist clinicians to integrate palliative care into their practice. Clinical management of patients receiving palliative care requires consideration of human factors and related organisational characteristics that involve cultural, educational and motivational aspects of the patient/family and clinicians. Educational aims To explain the basic domains of palliative care applicable to chronic respiratory diseases. To review palliative care interventions for patients with chronic respiratory diseases. To outline a checklist for clinicians to use in practice, based on the domains of palliative care. To propose recommendations for clinical management of patients receiving palliative care for chronic respiratory diseases. PMID:29209422

Palliative Care: Delivering Comprehensive Oncology Nursing Care.

PubMed

Dahlin, Constance

2015-11-01

To describe palliative care as part of comprehensive oncology nursing care. A review of the palliative care, oncology, and nursing literature over the past 10 years. Palliative care is mandated as part of comprehensive cancer care. A cancer diagnosis often results in distress in the physical, psychosocial, spiritual, and emotional domains of care. Oncology nurses are essential in providing palliative care from diagnosis to death to patients with cancer. They address the myriad aspects of cancer. With palliative care skills and knowledge, oncology nurses can provide quality cancer care. There are many opportunities in which oncology nurses can promote palliative care. Oncology nurses must obtain knowledge and skills in primary palliative care to provide comprehensive cancer care. Copyright © 2015 Elsevier Inc. All rights reserved.

Development and Implementation of a Pediatric Palliative Care Program in a Developing Country.

PubMed

Doherty, Megan; Thabet, Chloé

2018-01-01

Palliative care is recognized as an important component of care for children with cancer and other life-limiting conditions. In resource limited settings, palliative care is a key component of care for children with cancer and other life-limiting conditions. Globally, 98% of children who need palliative care live in low- or middle-income countries, where there are very few palliative care services available. There is limited evidence describing the practical considerations for the development and implementation of sustainable and cost-effective palliative care services in developing countries. Our aim is to describe the key considerations and initiatives that were successful in planning and implementing a hospital-based pediatric palliative care service specifically designed for a resource-limited setting. Bangabandu Sheikh Mujib Medical University (BSMMU) is a tertiary referral hospital in Bangladesh. Local palliative care services are very limited and focused on adult patients. In partnership with World Child Cancer, a project establishing a pediatric palliative care service was developed for children with cancer at BSMMU. We describe four key elements which were crucial for the success of this program: (1) raising awareness and sensitizing hospital administrators and clinical staff about pediatric palliative care; (2) providing education and training on pediatric palliative care for clinical staff; (3) forming a pediatric palliative care team; and (4) collecting data to characterize the need for pediatric palliative care. This model of a hospital-based pediatric palliative care service can be replicated in other resource-limited settings and can be expanded to include children with other life-limiting conditions. The development of pilot programs can generate interest among local physicians to become trained in pediatric palliative care and can be used to advocate for the palliative care needs of children.

Development of Palliative Care in China: A Tale of Three Cities.

PubMed

Yin, Zhenyu; Li, Jinxiang; Ma, Ke; Ning, Xiaohong; Chen, Huiping; Fu, Haiyan; Zhang, Haibo; Wang, Chun; Bruera, Eduardo; Hui, David

2017-11-01

China is the most populous country in the world, but access to palliative care is extremely limited. A better understanding of the development of palliative care programs in China and how they overcome the barriers to provide services would inform how we can further integrate palliative care into oncology practices in China. Here, we describe the program development and infrastructure of the palliative care programs at three Chinese institutions, using these as examples to discuss strategies to accelerate palliative care access for cancer patients in China. Case study of three palliative care programs in Chengdu, Kunming, and Beijing. The three examples of palliative care delivery in China ranged from a comprehensive program that includes all major branches of palliative care in Chengdu, a program that is predominantly inpatient-based in Kunming, and a smaller program at an earlier stage of development in Beijing. Despite the numerous challenges related to the limited training opportunities, stigma on death and dying, and lack of resources and policies to support clinical practice, these programs were able to overcome many barriers to offer palliative care services to patients with advanced diseases and to advance this discipline in China through visionary leadership, collaboration with other countries to acquire palliative care expertise, committed staff members, and persistence. Palliative care is limited in China, although a few comprehensive programs exist. Our findings may inform palliative care program development in other Chinese hospitals. With a population of 1.3 billion, China is the most populous country in the world, and cancer is the leading cause of death. However, only 0.7% of hospitals offer palliative care services, which significantly limits palliative care access for Chinese cancer patients. Here, we describe the program development and infrastructure of three palliative care programs in China, using these as examples to discuss how they were able to overcome various barriers to implement palliative care. Lessons from these programs may help to accelerate the progress of palliative cancer care in China. © AlphaMed Press 2017.

Effectiveness of the Certificate Course in Essentials of Palliative Care Program on the Knowledge in Palliative Care among the Participants: A Cross-sectional Interventional Study

PubMed Central

Bhatnagar, Sushma; Patel, Anuradha

2018-01-01

Background: Palliative medicine is an upcoming new specialty aimed at relieving suffering, improving quality of life and comfort care. There are many challenges and barriers in providing palliative care to our patients. The major challenge is lack of knowledge, attitude and skills among health-care providers. Objectives: Evaluate the effectiveness of the certificate course in essentials of palliative care (CCEPC) program on the knowledge in palliative care among the participants. Subjects and Methods: All participants (n = 29) of the CCEPC at All India Institute of Medical Sciences, Delhi, giving consent for pretest and posttest were recruited in the study. This educational lecture of 15 h was presented to all the participants following pretest and participants were given same set of questionnaire to be filled as postintervention test. Results: In pretest, 7/29 (24.1%) had good knowledge which improved to 24/29 (82.8%) after the program. In pretest, 62.1% had average knowledge and only 13.8% had poor knowledge. There was also improvement in communication skills, symptom management, breaking bad news, and pain assessment after completion of the program. Conclusion: The CCEPC is an effective program and improving the knowledge level about palliative care among the participants. The participants should implement this knowledge and the skills in their day-to-day practice to improve the quality of life of patients. PMID:29440814

GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study

PubMed Central

Tan, Heather M; O'Connor, Margaret M; Miles, Gail; Klein, Britt; Schattner, Peter

2009-01-01

Background Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. Methods Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed) to GPs (n = 524) and through a special interest group to palliative care nurses (n = 122) in both rural and urban areas. Results Questionnaires were returned by 114 GPs (22%) and 52 nurses (43%). The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC) Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources. Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. Conclusion While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good communication between members of multidisciplinary teams, which include the GP, may enhance after hours service provision for patients receiving palliative care at home. The role of locums in after PC is an area for further research PMID:19751527

Medicine as It Should Be: Teaching Team and Teamwork during a Palliative Care Clerkship.

PubMed

Head, Barbara A; Furman, Christian Davis; Lally, Andrew M; Leake, Kimberly; Pfeifer, Mark

2018-05-01

Interprofessional Education (IPE) is an important component of medical education. Rotations with palliative care interdisciplinary teams (IDTs) provide an optimal environment for IPE and teaching teamwork skills. Our objective was to assess the learning of senior medical students during a palliative care rotation. A constant comparison method based on grounded theory was used in this qualitative study. Senior medical students completed a semi-structured reflective writing exercise after a required one-week palliative care clerkship. Sixty randomly selected reflective writings were analyzed. The reflective writings were analyzed to evaluate the student's experiences. Dominant themes identified were related to teams and teamwork. Eight specific themes were identified: value of IDT for team members; value of IDT for patient/family; importance of each team member; reliance on other team members; roles of team members; how teams work; team communication; and interdisciplinary assessment and care planning. Students described exposure to novel experiences and planned to incorporate newly learned behaviors in their future practice. By participating in palliative care IDTs, medical students consistently learned about teamwork within healthcare. Additionally, they learned the importance of such teamwork to patients and the team itself. Rotations with palliative care IDTs have a significant role to play in IPE and preparing medical students to practice on teams.

Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting.

PubMed

Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry

2014-12-01

Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. On average, the clinical staff rated the quality of care provided to people who die in the hospital as 'good' (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

PubMed Central

2013-01-01

Background Improving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management. Methods A prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded. Results Ninety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan. Conclusion One fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions. PMID:23537092

Establishing a regional, multisite database for quality improvement and service planning in community-based palliative care and hospice.

PubMed

Bull, Janet; Zafar, S Yousuf; Wheeler, Jane L; Harker, Matthew; Gblokpor, Agbessi; Hanson, Laura; Hulihan, Deirdre; Nugent, Rikki; Morris, John; Abernethy, Amy P

2010-08-01

Outpatient palliative care, an evolving delivery model, seeks to improve continuity of care across settings and to increase access to services in hospice and palliative medicine (HPM). It can provide a critical bridge between inpatient palliative care and hospice, filling the gap in community-based supportive care for patients with advanced life-limiting illness. Low capacities for data collection and quantitative research in HPM have impeded assessment of the impact of outpatient palliative care. In North Carolina, a regional database for community-based palliative care has been created through a unique partnership between a HPM organization and academic medical center. This database flexibly uses information technology to collect patient data, entered at the point of care (e.g., home, inpatient hospice, assisted living facility, nursing home). HPM physicians and nurse practitioners collect data; data are transferred to an academic site that assists with analyses and data management. Reports to community-based sites, based on data they provide, create a better understanding of local care quality. The data system was developed and implemented over a 2-year period, starting with one community-based HPM site and expanding to four. Data collection methods were collaboratively created and refined. The database continues to grow. Analyses presented herein examine data from one site and encompass 2572 visits from 970 new patients, characterizing the population, symptom profiles, and change in symptoms after intervention. A collaborative regional approach to HPM data can support evaluation and improvement of palliative care quality at the local, aggregated, and statewide levels.

The development of hospital-based palliative care services in public hospitals in the Western Cape, South Africa.

PubMed

Gwyther, L; Krause, R; Cupido, C; Stanford, J; Grey, H; Credé, T; De Vos, A; Arendse, J; Raubenheimer, P

2018-02-01

With the recent approval of a South African (SA) National Policy Framework and Strategy for Palliative Care by the National Health Council, it is pertinent to reflect on initiatives to develop palliative care services in public hospitals. This article reviews the development of hospital-based palliative care services in the Western Cape, SA. Palliative care services in SA started in the non-governmental sector in the 1980s. The first SA hospital-based palliative care team was established in Charlotte Maxeke Johannesburg Academic Hospital in 2001. The awareness of the benefit of palliative care in the hospital setting led to the development of isolated pockets of excellence providing palliative care in the public health sector in SA. This article describes models for palliative care at tertiary, provincial and district hospital level, which could inform development of hospital-based palliative care as the national policy for palliative care is implemented in SA.

Poverty Reduction in India through Palliative Care: A Pilot Project

PubMed Central

Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

Introduction: EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. Context: This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. Aims: EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare – a pilot project. Settings and Design: EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. Subjects and Methods: EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. Statistical Analysis: An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Results: Poverty of palliative care patients 18% of households enrolled for palliative care earn

Gaps in Provision of Primary and Specialty Palliative Care in the Acute Care Setting by Race and Ethnicity.

PubMed

Chuang, Elizabeth; Hope, Aluko A; Allyn, Katherine; Szalkiewicz, Elissa; Gary, Brittany; Gong, Michelle N

2017-11-01

Previous research has identified a large unmet need in provision of specialist-level palliative care services in the hospital. How much of this gap is filled by primary palliative care provided by generalists or nonpalliative specialists has not been quantified. Estimates of racial and ethnic disparities have been inconsistent. The objective of this study was to 1) estimate primary and specialty palliative care delivery and to measure unmet needs in the inpatient setting and 2) explore racial and ethnic disparities in palliative care delivery. This was a cross-sectional, retrospective study of 55,658 adult admissions to two acute care hospitals in the Bronx in 2013. Patients with palliative care needs were identified by criteria adapted from the literature. The primary outcomes were delivery of primary and specialist-level palliative care. In all, 18.5% of admissions met criteria for needing palliative care. Of those, 18% received specialist-level palliative care, an estimated 30% received primary palliative care, and 37% had no evidence of palliative care or advance care planning. Black and Hispanic patients were not less likely to receive specialist-level palliative care (adjusted odds ratio [OR] black patients = 1.18, 95% CI 0.98, 1.42; adjusted OR Hispanic patients = 1.24, 95% CI 1.04, 1.48), but they were less likely to receive primary palliative care (adjusted OR black patients = 0.41, 95% CI 0.20, 0.84; adjusted OR Hispanic patients = 0.48, 95% CI 0.25, 0.94). Even when considering primary and specialty palliative care, hospitalized patients have a high prevalence of unmet palliative care need. Further research is needed understand racial and ethnic disparities in palliative care delivery. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Community pharmacists' attitudes toward palliative care: an Australian nationwide survey.

PubMed

O'Connor, Moira; Hewitt, Lauren Y; Tuffin, Penelope H R

2013-12-01

Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. A cross-sectional descriptive survey design was used. Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted--and therefore underpinned--a positive attitude towards palliative care and the provision of services and supports for palliative care patients. The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on.

Physical Therapy in Palliative Care: From Symptom Control to Quality of Life: A Critical Review

PubMed Central

Kumar, Senthil P; Jim, Anand

2010-01-01

Physiotherapy is concerned with identifying and maximizing movement potential, within the spheres of promotion, prevention, treatment and rehabilitation. Physical therapists practice in a broad range of inpatient, outpatient, and community-based settings such as hospice and palliative care centers where as part of a multidisciplinary team of care, they address the physical and functional dimensions of the patients’ suffering. Physiotherapy treatment methods like therapeutic exercise, electrical modalities, thermal modalities, actinotherapy, mechanical modalities, manual physical therapy and assistive devices are useful for a range of life-threatening and life-limiting conditions like cancer and cancer-associated conditions; HIV; neurodegenerative disorders like amyotrophic lateral sclerosis, multiple sclerosis; respiratory disorders like idiopathic pulmonary fibrosis; and altered mental states. The professional armamentarium is still expanding with inclusion of other miscellaneous techniques which were also proven to be effective in improving quality of life in these patients. Considering the scope of physiotherapy in India, and in palliative care, professionals in a multidisciplinary palliative care team need to understand and mutually involve toward policy changes to successfully implement physical therapeutic palliative care delivery. PMID:21218003

Facts and indicators on palliative care development in 52 countries of the WHO European region: results of an EAPC Task Force.

PubMed

Centeno, Carlos; Clark, David; Lynch, Thomas; Racafort, Javier; Praill, David; De Lima, Liliana; Greenwood, Anthony; Flores, Luis Alberto; Brasch, Simon; Giordano, Amelia

2007-09-01

The European Association for Palliative Care Task (EAPC) Force on the Development of Palliative Care in Europe was created in 2003 and the results of its work are now being reported in full, both here and in several other publications. The objective of the Task Force is to assess the degree of palliative care development in the European Region as defined by the World Health Organization (WHO). The Task Force is a collaboration between EAPC, the International Observatory on End of Life Care, Help the Hospices and the International Association for Hospice and Palliative Care. The University of Navarra have collaborated in the dissemination of results and is involved in further developments of this group. Four studies, each with different working methods, made up the study protocol: a literature review, a review of all the existing palliative care directories in Europe, a qualitative ;Eurobarometer' survey and a quantitative ;Facts Questionnaire' survey. The work of the Task Force covers the entire WHO European Region of 52 countries. In this article we present a comparative study on the development of palliative care in Europe, drawing on all four elements of the study. Different models of service delivery have been developed and implemented throughout the countries of Europe. For example, in addition to the UK, the countries of Germany, Austria, Poland and Italy have a well-developed and extensive network of hospices. The model for mobile teams or hospital support teams has been adopted in a number of countries, most notably in France. Day Centres are a development that is characteristic of the UK with hundreds of these services currently in operation. The number of beds per million inhabitants ranges between 45-75 beds in the most advanced European countries, to only a few beds in others. Estimates on the number of physicians working full time in palliative care are shown. The countries with the highest development of palliative care in their respective subregions as measured in terms of ratio of services per one million inhabitants are: Western Europe - UK (15); Central and Eastern Europe - Poland (9); Commonwealth of Independent States - Armenia (8). This paper also presents indicators on the development of palliative care based on the bibliometric analysis of scientific journals and on the vitality of the palliative care movement in each country.

Palliative Care Processes Embedded in the ICU Workflow May Reserve Palliative Care Teams for Refractory Cases.

PubMed

Mun, Eluned; Umbarger, Lillian; Ceria-Ulep, Clementina; Nakatsuka, Craig

2018-01-01

Palliative Care Teams have been shown to be instrumental in the early identification of multiple aspects of advanced care planning. Despite an increased number of services to meet the rising consultation demand, it is conceivable that the numbers of palliative care consultations generated from an ICU alone could become overwhelming for an existing palliative care team. Improve end-of-life care in the ICU by incorporating basic palliative care processes into the daily routine ICU workflow, thereby reserving the palliative care team for refractory situations. A structured, palliative care, quality-improvement program was implemented and evaluated in the ICU at Kaiser Permanente Medical Center in Hawaii. This included selecting trigger criteria, a care model, forming guidelines, and developing evaluation criteria. These included the early identification of the multiple features of advanced care planning, numbers of proactive ICU and palliative care family meetings, and changes in code status and treatment upon completion of either meeting. Early identification of Goals-of-Care, advance directives, and code status by the ICU staff led to a proactive ICU family meeting with resultant increases in changes in code status and treatment. The numbers of palliative care consultations also rose, but not significantly. Palliative care processes could be incorporated into a daily ICU workflow allowing for integration of aspects of advanced care planning to be identified in a systematic and proactive manner. This reserved the palliative care team for situations when palliative care efforts performed by the ICU staff were ineffective.

Frequently Asked Questions (Palliative Care: Conversations Matter)

MedlinePlus

... NINR Home About Email Search En Español Palliative Care - Top Menu Show — Palliative Care - Top Menu Hide — ... and Frequently Asked Questions What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ...

Is an advance care planning model feasible in community palliative care? A multi-site action research approach.

PubMed

Blackford, Jeanine; Street, Annette

2012-09-01

This article reports a study to determine the feasibility of an advance care planning model developed with Australian community palliative care services. An effective advance care planning programme involves an organizational wide commitment and preparedness for health service reform to embed advance care planning into routine practice. Internationally, such programmes have been implemented predominantly in aged and acute care with more recent work in primary care. A multi-site action research was conducted over a 16-month period in 2007-2009 with three Victorian community palliative care services. Using mixed method data collection strategies to assess feasibility, we conducted a baseline audit of staff and clients; analysed relevant documents (client records, policies, procedures and quality improvement strategies) pre-implementation and post-implementation and conducted key informant interviews (n = 9). Three community palliative care services: one regional and two metropolitan services in Victoria, Australia. The services demonstrated that it was feasible to embed the Model into their organizational structures. Advance care planning conversations and involvement of family was an important outcome measure rather than completion rate of advance care planning documents in community settings. Services adapted and applied their own concept of community, which widened the impact of the model. Changes to quality audit processes were essential to consolidate the model into routine palliative care practice. An advance care planning model is feasible for community palliative care services. Quality audit processes are an essential component of the Model with documentation of advance care planning discussion established as an important outcome measure. © 2011 Blackwell Publishing Ltd.

Improving palliative care outcomes for Aboriginal Australians: service providers’ perspectives

PubMed Central

2013-01-01

Background Aboriginal Australians have a lower rate of utilisation of palliative care services than the general population. This study aimed to explore care providers’ experiences and concerns in providing palliative care for Aboriginal people, and to identify opportunities for overcoming gaps in understanding between them and their Aboriginal patients and families. Methods In-depth, qualitative interviews with urban, rural and remote palliative care providers were undertaken in inpatient and community settings in Western Australia. Interviews were audio-recorded, transcribed verbatim and coded independently by two researchers with QSR NVivo 10 software used to help manage data. Data analysis was informed by multiple theoretical standpoints, including the social ecological model, critical cultural theories and the ‘cultural security’ framework. Thematic analysis was carried out that identified patterns within data. Results Fifteen palliative care providers were interviewed. Overall they reported lack of understanding of Aboriginal culture and being uncertain of the needs and priorities of Aboriginal people during end-of-life care. According to several participants, very few Aboriginal people had an understanding of palliative care. Managing issues such as anger, denial, the need for non-medical support due to socioeconomic disadvantage, and dealing with crises and conflicts over funeral arrangements were reported as some of the tensions between Aboriginal patients and families and the service providers. Conclusion Early referral to palliative care is important in demonstrating and maintaining a caring therapeutic relationship. Paramount to meeting the needs for Aboriginal patients was access to appropriate information and logistical, psychological and emotional support. These were often seen as essential but additional to standard palliative care services. The broader context of Aboriginal history and historical distrust of mainstream services was seen to impinge on Aboriginal people’s willingness and ability to accept care and support from these services. This context needs to be understood and acknowledged at the system level. More cultural safety training was requested by care providers but it was not seen as replacing the need for an Aboriginal worker in the palliative care team. PMID:23875957

The Quality Imperative for Palliative Care

PubMed Central

Kamal, Arif H.; Hanson, Laura C.; Casarett, David J.; Dy, Sydney M.; Pantilat, Steven Z.; Lupu, Dale; Abernethy, Amy P.

2015-01-01

Palliative medicine must prioritize the routine assessment of the quality of clinical care we provide. This includes regular assessment, analysis, and reporting of data on quality. Assessment of quality informs opportunities for improvement and demonstrates to our peers and ourselves the value of our efforts. In fact, continuous messaging of the value of palliative care services is needed to sustain our discipline; this requires regularly evaluating the quality of our care. As the reimbursement mechanisms for health care in the United States shift from fee-for-service to fee-for-value models, palliative care will be expected to report robust data on quality of care. We must move beyond demonstrating to our constituents (including patients and referrers), “here is what we do,” and increase the focus on “this is how well we do it” and “let’s see how we can do it better.” It is incumbent on palliative care professionals to lead these efforts. This involves developing standardized methods to collect data without adding additional burden, comparing and sharing our experiences to promote discipline-wide quality assessment and improvement initiatives, and demonstrating our intentions for quality improvement on the clinical frontline. PMID:25057987

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians

PubMed Central

2011-01-01

Background The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process. The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group. The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Methods Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. Results 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. Conclusions The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants. This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention. Trial Registration German Clinical Trials Register DRKS00000694 PMID:21605381

Palliative care and neurology

PubMed Central

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

2014-01-01

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. PMID:24991027

Palliative care and neurology: time for a paradigm shift.

PubMed

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi

2014-08-05

Palliative care is an approach to the care of patients and families facing progressive and chronic illnesses that focuses on the relief of suffering due to physical symptoms, psychosocial issues, and spiritual distress. As neurologists care for patients with chronic, progressive, life-limiting, and disabling conditions, it is important that they understand and learn to apply the principles of palliative medicine. In this article, we aim to provide a practical starting point in palliative medicine for neurologists by answering the following questions: (1) What is palliative care and what is hospice care? (2) What are the palliative care needs of neurology patients? (3) Do neurology patients have unique palliative care needs? and (4) How can palliative care be integrated into neurology practice? We cover several fundamental palliative care skills relevant to neurologists, including communication of bad news, symptom assessment and management, advance care planning, caregiver assessment, and appropriate referral to hospice and other palliative care services. We conclude by suggesting areas for future educational efforts and research. © 2014 American Academy of Neurology.

Perioperative Palliative Care Considerations for Surgical Oncology Nurses.

PubMed

Sipples, Rebecca; Taylor, Richard; Kirk-Walker, Deborah; Bagcivan, Gulcan; Dionne-Odom, J Nicholas; Bakitas, Marie

2017-02-01

To explore the opportunities to incorporate palliative care into perioperative oncology patient management and education strategies for surgical oncology nurses. Articles related to palliative care and surgical oncology to determine the degree of integration, gaps, and implications for practice. Although evidence supports positive patient outcomes when palliative care is integrated in the perioperative period, uptake of palliative care into surgical settings is slow. Palliative care concepts are not adequately integrated into surgical and nursing education. With appropriate palliative care education and training, surgical oncology nurses will be empowered to foster surgical-palliative care collaborations to improve patient outcomes. Copyright © 2016 Elsevier Inc. All rights reserved.

Palliative Care Exposure in Internal Medicine Residency Education: A Survey of ACGME Internal Medicine Program Directors.

PubMed

Edwards, Asher; Nam, Samuel

2018-01-01

As the baby boomer generation ages, the need for palliative care services will be paramount and yet training for palliative care physicians is currently inadequate to meet the current palliative care needs. Nonspecialty-trained physicians will need to supplement the gap between supply and demand. Yet, no uniform guidelines exist for the training of internal medicine residents in palliative care. To our knowledge, no systematic study has been performed to evaluate how internal medicine residencies currently integrate palliative care into their training. In this study, we surveyed 338 Accreditation Council for Graduate Medical Education-accredited internal medicine program directors. We queried how palliative care was integrated into their training programs. The vast majority of respondents felt that palliative care training was "very important" (87.5%) and 75.9% of respondents offered some kind of palliative care rotation, often with a multidisciplinary approach. Moving forward, we are hopeful that the data provided from our survey will act as a launching point for more formal investigations into palliative care education for internal medicine residents. Concurrently, policy makers should aid in palliative care instruction by formalizing required palliative care training for internal medicine residents.

Strategies for Development of Palliative Care From the Perspectives of General Population and Health Care Professionals: A Japanese Outreach Palliative Care Trial of Integrated Regional Model Study.

PubMed

Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji

2015-09-01

This study primarily aimed to identify future actions required to promote palliative care in Japan. The future actions regarded as effective by the general population were "improve physicians' skill in palliative care" (61%), "create a counseling center for cancer" (61%), and "improve nurses' skill in palliative care" (60%). In contrast, future actions regarded as effective by the health care professionals were "set up a Web site that provides information about cancer" (72%), "promote consultation with specialists in palliative care" (71%), and "open an outpatient department specializing in palliative care" (70%). The results suggest (1) development and maintenance of settings; (2) enhancement of palliative care education and training programs for health care providers; and (3) improvement in distributing information about cancer and regional palliative care resources to the general population. © The Author(s) 2014.

What is case management in palliative care? An expert panel study

PubMed Central

2012-01-01

Background Case management is a heterogeneous concept of care that consists of assessment, planning, implementing, coordinating, monitoring, and evaluating the options and services required to meet the client's health and service needs. This paper describes the result of an expert panel procedure to gain insight into the aims and characteristics of case management in palliative care in the Netherlands. Methods A modified version of the RAND®/University of California at Los Angeles (UCLA) appropriateness method was used to formulate and rate a list of aims and characteristics of case management in palliative care. A total of 76 health care professionals, researchers and policy makers were invited to join the expert panel, of which 61% participated in at least one round. Results Nine out of ten aims of case management were met with agreement. The most important areas of disagreement with regard to characteristics of case management were hands-on nursing care by the case manager, target group of case management, performance of other tasks besides case management and accessibility of the case manager. Conclusions Although aims are agreed upon, case management in palliative care shows a high level of variability in implementation choices. Case management should aim at maintaining continuity of care to ensure that patients and those close to them experience care as personalised, coherent and consistent. PMID:22709349

The use of Quality-Adjusted Life Years in cost-effectiveness analyses in palliative care: Mapping the debate through an integrative review.

PubMed

Wichmann, Anne B; Adang, Eddy Mm; Stalmeier, Peep Fm; Kristanti, Sinta; Van den Block, Lieve; Vernooij-Dassen, Myrra Jfj; Engels, Yvonne

2017-04-01

In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year's value for palliative care. The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to-in addition to the EQ-5D- make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year.

The PAMINO-project: evaluating a primary care-based educational program to improve the quality of life of palliative patients

PubMed Central

Rosemann, Thomas; Hermann, Katja; Miksch, Antje; Engeser, Peter; Szecsenyi, Joachim

2007-01-01

Background The care of palliative patients challenges the health care system in both quantity and quality. Especially the role of primary care givers needs to be strengthened to provide them with the knowledge and the confidence of applying an appropriate end-of-life care to palliative patients. To improve health care services for palliative patients in primary care, interested physicians in and around Heidelberg, Germany, are enabled to participate in the community-based program 'Palliative Medical Initiative North Baden (PAMINO)' to improve their knowledge in dealing with palliative patients. The impact of this program on patients' health and quality of life remains to be evaluated. Methods/Design The evaluation of PAMINO is a non-randomized, controlled study. Out of the group of primary care physicians who took part in the PAMINO program, a sample of 45 physicians and their palliative patients will be compared to a sample of palliative patients of 45 physicians who did not take part in the program. Every four weeks for 6 months or until death, patients, physicians, and the patients' family caregivers in both groups answer questions to therapy strategies, quality of life (QLQ-C15-PAL, POS), pain (VAS), and burden for family caregivers (BSFC). The inclusion of physicians and patients in the study starts in March 2007. Discussion Although participating physicians value the increase in knowledge they receive from PAMINO, the effects on patients remain unclear. If the evaluation reveals a clear benefit for patients' quality of life, a larger-scale implementation of the program is considered. Trial registration: The study was registered at ‘current controlled trials (CCT)’, registration number: ISRCTN78021852. PMID:17535418

The use of Quality-Adjusted Life Years in cost-effectiveness analyses in palliative care: Mapping the debate through an integrative review

PubMed Central

Wichmann, Anne B; Adang, Eddy MM; Stalmeier, Peep FM; Kristanti, Sinta; Van den Block, Lieve; Vernooij-Dassen, Myrra JFJ; Engels, Yvonne

2017-01-01

Background: In cost-effectiveness analyses in healthcare, Quality-Adjusted Life Years are often used as outcome measure of effectiveness. However, there is an ongoing debate concerning the appropriateness of its use for decision-making in palliative care. Aim: To systematically map pros and cons of using the Quality-Adjusted Life Year to inform decisions on resource allocation among palliative care interventions, as brought forward in the debate, and to discuss the Quality-Adjusted Life Year’s value for palliative care. Design: The integrative review method of Whittemore and Knafl was followed. Theoretical arguments and empirical findings were mapped. Data sources: A literature search was conducted in PubMed, EMBASE, and CINAHL, in which MeSH (Medical Subject Headings) terms were Palliative Care, Cost-Benefit Analysis, Quality of Life, and Quality-Adjusted Life Years. Findings: Three themes regarding the pros and cons were identified: (1) restrictions in life years gained, (2) conceptualization of quality of life and its measurement, including suggestions to adapt this, and (3) valuation and additivity of time, referring to changing valuation of time. The debate is recognized in empirical studies, but alternatives not yet applied. Conclusion: The Quality-Adjusted Life Year might be more valuable for palliative care if specific issues are taken into account. Despite restrictions in life years gained, Quality-Adjusted Life Years can be achieved in palliative care. However, in measuring quality of life, we recommend to—in addition to the EQ-5D— make use of quality of life or capability instruments specifically for palliative care. Also, we suggest exploring the possibility of integrating valuation of time in a non-linear way in the Quality-Adjusted Life Year. PMID:28190374

Palliative care development in the Asia-Pacific region: an international survey from the Asia Pacific Hospice Palliative Care Network (APHN).

PubMed

Yamaguchi, Takashi; Kuriya, Meiko; Morita, Tatsuya; Agar, Meera; Choi, Youn Seon; Goh, Cynthia; Lingegowda, K B; Lim, Richard; Liu, Rico K Y; MacLeod, Roderick; Ocampo, Rhodora; Cheng, Shao-Yi; Phungrassami, Temsak; Nguyen, Yen-Phi; Tsuneto, Satoru

2017-03-01

Although palliative care is an important public healthcare issue worldwide, the current situation in the Asia-Pacific region has not been systematically evaluated. This survey aimed to clarify the current status of palliative care in the Asia-Pacific region. Questionnaires were sent to a representative physician of each member country/region of the Asia Pacific Hospice Palliative Care Network (APHN). The questionnaire examined palliative care service provision, information regarding physician certification in palliative care, the availability of essential drugs for palliative care listed by the International Association for Hospice and Palliative Care (IAHPC) and the regulation of opioid-prescribing practice. Of the 14 member countries/regions of the APHN, 12 (86%) responded. Some form of specialist palliative care services had developed in all the responding countries/regions. Eight member countries/regions had physician certifications for palliative care. Most essential drugs for palliative care listed by the IAHPC were available, whereas hydromorphone, oxycodone and transmucosal fentanyl were unavailable in most countries/regions. Six member countries/regions required permission to prescribe and receive opioids. The development of palliative care is in different stages across the surveyed countries/regions in the Asia-Pacific region. Data from this survey can be used as baseline data for monitoring the development of palliative care in this region. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Education, implementation, and policy barriers to greater integration of palliative care: A literature review.

PubMed

Aldridge, Melissa D; Hasselaar, Jeroen; Garralda, Eduardo; van der Eerden, Marlieke; Stevenson, David; McKendrick, Karen; Centeno, Carlos; Meier, Diane E

2016-03-01

Early integration of palliative care into the management of patients with serious disease has the potential to both improve quality of life of patients and families and reduce healthcare costs. Despite these benefits, significant barriers exist in the United States to the early integration of palliative care in the disease trajectory of individuals with serious illness. To provide an overview of the barriers to more widespread palliative care integration in the United States. A literature review using PubMed from 2005 to March 2015 augmented by primary data collected from 405 hospitals included in the Center to Advance Palliative Care's National Palliative Care Registry for years 2012 and 2013. We use the World Health Organization's Public Health Strategy for Palliative Care as a framework for analyzing barriers to palliative care integration. We identified key barriers to palliative care integration across three World Health Organization domains: (1) education domain: lack of adequate education/training and perception of palliative care as end-of-life care; (2) implementation domain: inadequate size of palliative medicine-trained workforce, challenge of identifying patients appropriate for palliative care referral, and need for culture change across settings; (3) policy domain: fragmented healthcare system, need for greater funding for research, lack of adequate reimbursement for palliative care, and regulatory barriers. We describe the key policy and educational opportunities in the United States to address and potentially overcome the barriers to greater integration of palliative care into the healthcare of Americans with serious illness. © The Author(s) 2015.

The impact of community-based palliative care on acute hospital use in the last year of life is modified by time to death, age and underlying cause of death. A population-based retrospective cohort study

PubMed Central

Rosenwax, Lorna; Arendts, Glenn; Semmens, James B.

2017-01-01

Objective Community-based palliative care is known to be associated with reduced acute care health service use. Our objective was to investigate how reduced acute care hospital use in the last year of life varied temporally and by patient factors. Methods A retrospective cohort study of the last year of life of 12,763 Western Australians who died from cancer or one of seven non-cancer conditions. Outcome measures were rates of hospital admissions and mean length of hospital stays. Multivariate analyses involved time-to-event and population averaged log-link gamma models. Results There were 28,939 acute care overnight hospital admissions recorded in the last year of life, an average of 2.3 (SD 2.2) per decedent and a mean length of stay of 9.2 (SD 10.3) days. Overall, the rate of hospital admissions was reduced 34% (95%CI 1–66) and the mean length of stay reduced 6% (95%CI 2–10) during periods of time decedents received community-based palliative care compared to periods of time not receiving this care. Decedents aged <70 years receiving community-based palliative care showed a reduced rate of hospital admission around five months before death, whereas for older decedents the reduction in hospital admissions was apparent a year before death. All decedents who were receiving community-based palliative care tended towards shorter hospital stays in the last month of life. Decedents with neoplasms had a mean length of stay three weeks prior to death while not receiving community-based palliative care of 9.6 (95%CI 9.3–9.9) days compared to 8.2 (95% CI 7.9–8.7) days when receiving community-based palliative care. Conclusion Rates of hospital admission during periods of receiving community-based palliative care were reduced with benefits evident five months before death and even earlier for older decedents. The mean length of hospital stay was also reduced while receiving community-based palliative care, mostly in the last month of life. PMID:28934324

It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care.

PubMed

Meyer, Dorothee; Schmidt, Pia; Zernikow, Boris; Wager, Julia

2018-01-01

Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration. Both face-to-face interviews with staff who work together with volunteers and a group discussion with all volunteers were conducted. These were supplemented by 2 questionnaires designed for this study that examined participants' characteristics and their estimation of what information volunteers need before they meet a patient. Nine staff members and 7 volunteers participated in this study. Their ideas of collaboration could be grouped into 3 categories: (i) factual level of collaboration, (ii) relationship level of collaboration, and (iii) overall appraisal of collaboration (suggestions for improvement). Communication can be considered a key factor in successful collaboration between volunteers and staff. Because many patients in pediatric palliative care units are not able to communicate verbally, good information flow between volunteers and staff is crucial for ensuring quality patient care. Moreover, communication is the key to establishing a team philosophy by clarifying roles and building relationships between volunteers and staff.

Acceptance of dying: a discourse analysis of palliative care literature.

PubMed

Zimmermann, Camilla

2012-07-01

The subject of death denial in the West has been examined extensively in the sociological literature. However, there has not been a similar examination of its "opposite", the acceptance of death. In this study, I use the qualitative method of discourse analysis to examine the use of the term "acceptance" of dying in the palliative care literature from 1970 to 2001. A Medline search was performed by combining the text words "accept or acceptance" with the subject headings "terminal care or palliative care or hospice care", and restricting the search to English language articles in clinical journals discussing acceptance of death in adults. The 40 articles were coded and analysed using a critical discourse analysis method. This paper focuses on the theme of acceptance as integral to palliative care, which had subthemes of acceptance as a goal of care, personal acceptance of healthcare workers, and acceptance as a facilitator of care. For patients and families, death acceptance is a goal that they can be helped to attain; for palliative care staff, acceptance of dying is a personal quality that is a precondition for effective practice. Acceptance not only facilitates the dying process for the patient and family, but also renders care easier. The analysis investigates the intertextuality of these themes with each other and with previous texts. From a Foucauldian perspective, I suggest that the discourse on acceptance of dying represents a productive power, which disciplines patients through apparent psychological and spiritual gratification, and encourages participation in a certain way to die. Copyright © 2012 Elsevier Ltd. All rights reserved.

MORECare research methods guidance development: recommendations for ethical issues in palliative and end-of-life care research.

PubMed

Gysels, Marjolein; Evans, Catherine J; Lewis, Penney; Speck, Peter; Benalia, Hamid; Preston, Nancy J; Grande, Gunn E; Short, Vicky; Owen-Jones, Eleanor; Todd, Chris J; Higginson, Irene J

2013-12-01

There is little guidance on the particular ethical concerns that research raises with a palliative care population. To present the process and outcomes of a workshop and consensus exercise on agreed best practice to accommodate ethical issues in research on palliative care. Consultation workshop using the MORECare Transparent Expert Consultation approach. Prior to workshops, participants were sent overviews of ethical issues in palliative care. Following the workshop, nominal group techniques were used to produce candidate recommendations. These were rated online by participating experts. Descriptive statistics were used to analyse agreement and consensus. Narrative comments were collated. Experts in ethical issues and palliative care research were invited to the Cicely Saunders Institute in London. They included senior researchers, service providers, commissioners, researchers, members of ethics committees and policy makers. The workshop comprised 28 participants. A total of 16 recommendations were developed. There was high agreement on the issue of research participation and high to moderate agreement on applications to research ethics committees. The recommendations on obtaining and maintaining consent from patients and families were the most contentious. Nine recommendations were refined on the basis of the comments from the online consultation. The culture surrounding palliative care research needs to change by fostering collaborative approaches between all those involved in the research process. Changes to the legal framework governing the research process are required to enhance the ethical conduct of research in palliative care. The recommendations are relevant to all areas of research involving vulnerable adults.

Inpatient Palliative Care Consultation and 30-Day Readmissions in Oncology.

PubMed

DiMartino, Lisa D; Weiner, Bryan J; Hanson, Laura C; Weinberger, Morris; Birken, Sarah A; Reeder-Hayes, Katherine; Trogdon, Justin G

2018-01-01

Prior research indicates that hospice and palliative care delivered in outpatient settings are associated with reduced hospital readmissions for cancer patients. However, little is known about how inpatient palliative care affects readmissions in oncology. To examine associations among inpatient palliative care consultation, hospice use (discharge), and 30-day readmissions among patients with solid tumor cancers. We identified all live discharges from a large tertiary cancer hospital between 2010 and 2016. Palliative care consult data were abstracted from medical charts and linked to hospital encounter data. Propensity scores were used to match palliative care consult to usual care encounters. Modified Poisson regression models estimated adjusted relative risk (aRR) and 95% confidence intervals (CI) of 30-day readmissions and hospice discharge. We compared predicted probabilities of readmission for palliative care consultation with hospice discharge, without hospice discharge, and usual care. Of 8085 eligible encounters, 753 involved a palliative care consult. The likelihood of having a 30-day readmission did not differ between palliative care consult and usual care groups (p > 0.05). However, the palliative care consult group was more likely than usual care to have a hospice discharge (aRR = 4.09, 95% CI: 3.07-5.44). The predicted probability of 30-day readmission was lower when palliative care consultation was combined with hospice discharge compared to usual care or consultation with discharge to nonhospice postacute care (p < 0.001). The effect of inpatient palliative care on readmissions in oncology is largely driven by hospice enrollment. Strategies that combine palliative care consultation with hospice discharge may decrease hospital readmissions and improve cancer care quality.

To be a trained and supported volunteer in palliative care - a phenomenological study.

PubMed

Söderhamn, Ulrika; Flateland, Sylvi; Fensli, Marthe; Skaar, Ragnhild

2017-03-14

It has been found that including volunteers in palliative care is a positive contribution to seriously ill patients. It is, however, recommended that the volunteers are trained and supported. The aim of this study was to describe a group of trained and supported volunteers' lived experiences as volunteers in palliative care within the community health care services. This study adopted a descriptive phenomenological approach featuring individual interviews with nine volunteers. The interviews were analysed using the descriptive phenomenological research method according to Giorgi. Being a volunteer in palliative care was both a positive and meaningful experience. It was a privilege being able to help those in need, which yielded positive returns. As a volunteer, it was important to be present for the ill persons and to follow them in their various physical and psychical states, which also implied that the volunteer had to face and deal with challenging situations. However, volunteers stated it was crucial to possess knowledge and life experience, as well as a clarified role, and they stressed the importance of being followed up by a mentor. The findings showed that trained and supported volunteers among seriously ill or dying people within the realm of community health care services play an independent and important role in the palliative care team. A coordinator in palliative care is especially suitable for training and supporting the volunteers.

Development and challenges of palliative care in Indonesia: role of psychosomatic medicine.

PubMed

Putranto, Rudi; Mudjaddid, Endjad; Shatri, Hamzah; Adli, Mizanul; Martina, Diah

2017-01-01

To summarize the current status of palliative care and the role of psychosomatic medicine in Indonesia. Palliative care is not a new issue in Indonesia, which has been improving palliative care since 1992 and developed a palliative care policy in 2007 that was launched by the Indonesian Ministry of Health. However, the progress has been slow and varied across the country. Currently, palliative care services are only available in a few major cities, where most of the facilities for cancer treatment are located. Psychosomatic medical doctors have advantages that contribute to palliative care because of their special training in communication skills to deal with patients from the standpoints of both mind and body. Palliative care services in Indonesia are established in some hospitals. Future work is needed to build capacity, advocate to stakeholders, create care models that provide services in the community, and to increase the palliative care workforce. Psychosomatic medicine plays an important role in palliative care services.

Specialist palliative care nursing and the philosophy of palliative care: a critical discussion.

PubMed

Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine

2017-07-02

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care.

A Person-Centered, Registry-Based Learning Health System for Palliative Care: A Path to Coproducing Better Outcomes, Experience, Value, and Science

PubMed Central

Kamal, Arif H.; Kirkland, Kathryn B.; Meier, Diane E.; Nelson, Eugene C.; Pantilat, Steven Z.

2018-01-01

Abstract Background: Palliative care offers an approach to the care of people with serious illness that focuses on quality of life and aligning care with individual and family goals, and values in the context of what is medically achievable. Objective: Measurement of the impact of palliative care is critical for determining what works for which patients in what settings, to learn, improve care, and ensure access to high value care for people with serious illness. Methods: A learning health system that includes patients and families partnering with clinicians and care teams, is directly linked to a registry to support networks for improvement and research, and offers an ideal framework for measuring what matters to a range of stakeholders interested in improving care for this population. Measurements: Measurement focuses on the individual patient and family experience as the fundamental outcome of interest around which all care delivery is organized. Results: We describe an approach to codesigning and implementing a palliative care registry that functions as a learning health system, by combining patient and family inputs and clinical data to support person-centered care, quality improvement, accountability, transparency, and scientific research. Discussion: The potential for a palliative care learning health system that, by design, brings together enriched information environments to support coproduction of healthcare and facilitated peer networks to support patients and families, collaborative clinician networks to support palliative care program improvement, and collaboratories to support research and the application of research to benefit individual patients is immense. PMID:29091509

A palliative care needs assessment of rural hospitals.

PubMed

Fink, Regina M; Oman, Kathleen S; Youngwerth, Jeanie; Bryant, Lucinda L

2013-06-01

Palliative care services are lacking in rural hospitals. Implementing palliative care services in rural and remote areas requires knowledge of available resources, specific barriers, and a commitment from the hospital and community. The purpose of the study was to determine awareness, knowledge, barriers, and resources regarding palliative care services in rural hospitals. A descriptive survey design used an investigator-developed needs assessment to survey 374 (40% response rate) health care providers (chief executive officers, chiefs of medical staff, chief nursing officers, and social worker directors) at 236 rural hospitals (<100 beds) in seven Rocky Mountain states. Significant barriers to integrating palliative care exist: lack of administrative support, mentorship, and access to palliative care resources; inadequate basic knowledge about palliative care strategies; and limited training/skills in palliative care. Having contractual relationships with local hospices is a key facilitator. Respondents (56%) want to learn more about palliative care, specifically focusing on pain management, communication techniques, and end-of-life care issues. Webinar and online courses were suggested as strategies to promote long distance learning. It is imperative for quality of care that rural hospitals have practitioners who are up to date on current evidence and practice within a palliative care framework. Unique challenges exist to implementing palliative care services in rural hospitals. Opportunities for informing rural areas focus around utilizing existing hospice resources and relationships, and favoring Web-based classes and online courses. The development of a multifaceted intervention to facilitate education about palliative care and cultivate palliative care services in rural settings is indicated.

Current status of palliative care services in Indonesia: a literature review.

PubMed

Rochmawati, Erna; Wiechula, Rick; Cameron, Kate

2016-06-01

To review healthcare literature in relation to the provision of palliative care in Indonesia and to identify factors that may impact on palliative care development. People living with life-limiting illness benefit from access to palliative care services to optimize quality of life. Palliative care services are being expanded in developing countries but in Indonesia such services are in their infancy with many patients with life-limiting illnesses having access to appropriate health care compromised. Relevant healthcare databases including CINAHL, PubMed, Science Direct and Scopus were searched using the combinations of search terms: palliative care, terminal care, end-of-life care, Indonesia and nursing. A search of grey literature including Internet sites was also carried out. Nine articles were included in the review. Facilitating factors supporting the provision of palliative care included: a culture of strong familial support, government policy support, volunteering and support from regional organizations. Identified barriers to palliative care provision were a limited understanding of palliative care among healthcare professionals, the challenging geography of Indonesia and limited access to opioid medications. There are facilitators and barriers that currently impact on the development of palliative care in Indonesia. Strategies that can be implemented to improve palliative care include training of nurses and doctors in the primary care sector, integrating palliative care in undergraduate medical and nursing curriculum and educating family and community about basic care. Nurses and doctors who work in primary care can potentially play a role in supporting and educating family members providing direct care to patients with palliative needs. © 2016 International Council of Nurses.

Internal Medicine Residents' Beliefs, Attitudes, and Experiences Relating to Palliative Care: A Qualitative Study.

PubMed

Kawaguchi, S; Mirza, R; Nissim, R; Ridley, J

2017-05-01

Internal medicine residents are frequently called upon to provide palliative care to hospitalized patients, but report feeling unprepared to do so effectively. Curricular development to enhance residents' palliative care skills and competencies requires an understanding of current beliefs, attitudes and learning priorities. We conducted a qualitative study consisting of semi-structured interviews with ten internal medicine residents to explore their understanding of and experiences with palliative care. All of the residents interviewed had a sound theoretical understanding of palliative care, but faced many challenges in being able to provide care in practice. The challenges described by residents were system-related, patient-related and provider-related. They identified several priority areas for further learning, and discussed ways in which their current education in palliative care could be enhanced. Our findings provide important insights to guide curricular development for internal medicine trainees. The top five learning priorities in palliative care that residents identified in our study were: 1) knowing how and when to initiate a palliative approach, 2) improving communication skills, 3) improving symptom management skills, 4) identifying available resources, and 5) understanding the importance of palliative care. Residents felt that their education in palliative care could be improved by having a mandatory rotation in palliative care, more frequent didactic teaching sessions, more case-based teaching from palliative care providers, opportunities to be directly observed, and increased support from palliative care providers after-hours.

Design of a nationwide survey on palliative care for end-stage heart failure in Japan.

PubMed

Kurozumi, Yuma; Oishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito

2018-02-01

The term palliative care has historically been associated with support for individuals with advanced incurable cancer, so cardiologists and cardiac nurses may be unfamiliar with its principles and practice. However, palliative care is now a part of end-stage heart failure management. We conducted the first nationwide survey to investigate the status of palliative care for heart failure in Japan. A self-reported questionnaire was mailed to all Japanese Circulation Society - authorized cardiology training hospitals (n=1004) in August 2016. The response deadline was December 2016. The survey focused on the following topics: basic information about the facility and multidisciplinary team, patient symptoms for palliative care, positive outcomes after providing palliative care, drug therapy as palliative care for patients with heart failure, advance care planning with patients and their families, and impediments to providing palliative care to patients with heart failure. The results of the survey will be reported in detail elsewhere. Current guidelines on palliative care do not specifically address what team members should be involved, what drugs should be used, or when palliative care should be started. This survey collected information to improve the quality of palliative care and provide more specialized palliative care within the limits of resources. Copyright © 2017 Japanese College of Cardiology. Published by Elsevier Ltd. All rights reserved.

Does educating patients about the Early Palliative Care Study increase preferences for outpatient palliative cancer care? Findings from Project EMPOWER.

PubMed

Hoerger, Michael; Perry, Laura M; Gramling, Robert; Epstein, Ronald M; Duberstein, Paul R

2017-06-01

Randomized controlled trials, especially the Early Palliative Care Study (Temel et al., 2010), have shown that early outpatient palliative cancer care can improve quality of life for patients with advanced cancer or serious symptoms. However, fear and misconceptions drive avoidance of palliative care. Drawing from an empowerment perspective, we examined whether educating patients about evidence from the Early Palliative Care Study would increase preferences for palliative care. A sample of 598 patients with prostate, breast, lung, colon/rectal, skin, and other cancer diagnoses completed an Internet-mediated experiment using a between-group prepost design. Intervention participants received a summary of the Early Palliative Care Study; controls received no intervention. Participants completed baseline and posttest assessments of preferences of palliative care. Analyses controlled for age, gender, education, cancer type, presence of metastases, time since diagnosis, and baseline preferences. As hypothesized, the intervention had a favorable impact on participants' preferences for outpatient palliative cancer care relative to controls (d = 1.01, p < .001), while controlling for covariates. Intervention participants came to view palliative care as more efficacious (d = 0.79, p < .001) and less scary (d = 0.60, p < .001) and exhibited stronger behavioral intentions to utilize outpatient palliative care if referred (d = 0.60, p < .001). Findings were comparable in patients with metastatic disease, those with less education, and those experiencing financial strain. Educating patients about the Early Palliative Care Study increases preferences for early outpatient palliative care. This research has implications for future studies aimed at improving quality of life in cancer by increasing palliative care utilization. (PsycINFO Database Record (c) 2017 APA, all rights reserved).

Palliative care for Parkinson's disease: Patient and carer's perspectives explored through qualitative interview.

PubMed

Fox, Siobhan; Cashell, Alison; Kernohan, W George; Lynch, Marie; McGlade, Ciara; O'Brien, Tony; O'Sullivan, Sean S; Foley, Mary J; Timmons, Suzanne

2017-07-01

Palliative care is recommended for non-malignant illnesses, including Parkinson's disease. However, past research with healthcare workers highlights unmet palliative needs in this population and referral rates to Specialist Palliative Care are low. Some healthcare workers perceive a 'fear' in their patients about introducing palliative care. However, less is known about the views of people with Parkinson's disease and their carers about palliative care. (1) To explore the palliative care and related issues most affecting people with Parkinson's disease and their families and (2) to examine perceptions about/understanding of palliative care. This was a qualitative study; semi-structured interviews were conducted, transcribed and analysed using thematic analysis. A total of 31 people participated, both people with Parkinson's disease ( n = 19) and carers ( n = 12), across three Movement Disorder Clinics in the Republic of Ireland. People with Parkinson's disease and their carers were unfamiliar with the term palliative care. When informed of the role of palliative care, most felt that they would benefit from this input. People with Parkinson's disease and carers experienced a high illness burden and wanted extra support. Crises requiring Specialist Palliative Care involvement may occur at diagnosis and later, with advancing illness. Participants wanted more information about palliative care and especially further supports to address their psychosocial needs. A holistic palliative care approach could address the complex physical and psychosocial symptoms experienced by people with Parkinson's disease and their carers, and people with Parkinson's disease and their carers are open to palliative care. Further research needs to explore how palliative care can be introduced into the routine care for people with Parkinson's disease.

Barriers to palliative care in people with chronic obstructive pulmonary disease in home care: A qualitative study of the perspective of professional caregivers.

PubMed

Mousing, Camilla A; Timm, Helle; Lomborg, Kirsten; Kirkevold, Marit

2018-02-01

To examine the experiences with palliative care in people with chronic obstructive pulmonary disease among professional caregivers in a Danish home care setting. Many patients with advanced chronic obstructive pulmonary disease depend on professional caregivers in the primary sector to provide assistance and care. However, chronic obstructive pulmonary disease patients receive no or only very little palliative care compared to patients with cancer although they may have many burdensome symptoms. Qualitative explorative study. In 2013-2014, ten professional caregivers from three districts in a Danish municipality were followed during home visits to patients with chronic obstructive pulmonary disease and individual interviews about palliative care were subsequently conducted. In 2014, 66 professional caregivers, representing eleven home care districts, participated in ten group discussions about palliative care needs in this group of patients. Data were analysed using qualitative descriptive analysis. The study revealed a nonawareness of palliative care for patients with chronic obstructive pulmonary disease among the professional caregivers who expressed vague understanding of palliative care and lack of knowledge about the disease. Organisational barriers, such as lack of time and continuity in patient care, lack of opportunity to discuss palliative care and lack of peer learning were experienced as challenging in the provision of palliative care. Nonawareness and organisational barriers led to difficulties in identifying palliative care needs and reluctance to initiate conversations about palliative care. The findings indicate a need for education, training and reflection among professional caregivers in home care. Also, organisational changes may be needed to reduce the barriers to palliative care. The findings uncovered barriers to palliative care that must be addressed. Targeted educational programmes and organisational changes may increase the ability to identify palliative care needs and initiate and evaluate palliative interventions. © 2017 John Wiley & Sons Ltd.

Palliative care team visits. Qualitative study through participant observation

PubMed Central

Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz

2016-01-01

Objectives: To describe the clinical encounters that occur when a palliative care team provides patient care and the features that influence these encounters and indicate whether they are favorable or unfavorable depending on the expectations and feelings of the various participants. Methods: A qualitative case study conducted via participant observation. A total of 12 observations of the meetings of palliative care teams with patients and families in different settings (home, hospital and consultation room) were performed. The visits were follow-up or first visits, either scheduled or on demand. Content analysis of the observation was performed. Results: The analysis showed the normal follow-up activity of the palliative care unit that was focused on controlling symptoms, sharing information and providing advice on therapeutic regimens and care. The environment appeared to condition the patients' expressions and the type of patient relationship. Favorable clinical encounter conditions included kindness and gratitude. Unfavorable conditions were deterioration caused by approaching death, unrealistic family objectives and limited resources. Conclusion: Home visits from basic palliative care teams play an important role in patient and family well-being. The visits seem to focus on controlling symptoms and are conditioned by available resources. PMID:27226663

Palliative Care in Vietnam: Long-Term Partnerships Yield Increasing Access.

PubMed

Krakauer, Eric L; Thinh, Dang Huy Quoc; Khanh, Quach Thanh; Huyen, Hoang Thi Mong; Tuan, Tran Diep; The, Than Ha Ngoc; Cuong, Do Duy; Thuan, Tran Van; Yen, Nguyen Phi; Van Anh, Pham; Cham, Nguyen Thi Phuong; Doyle, Kathleen P; Yen, Nguyen Thi Hai; Khue, Luong Ngoc

2018-02-01

Palliative care began in Vietnam in 2001, but steady growth in palliative care services and education commenced several years later when partnerships for ongoing training and technical assistance by committed experts were created with the Ministry of Health, major public hospitals, and medical universities. An empirical analysis of palliative care need by the Ministry of Health in 2006 was followed by national palliative care clinical guidelines, initiation of clinical training for physicians and nurses, and revision of opioid prescribing regulations. As advanced and specialist training programs in palliative care became available, graduates of these programs began helping to establish palliative care services in their hospitals. However, community-based palliative care is not covered by government health insurance and thus is almost completely unavailable. Work is underway to test the hypothesis that insurance coverage of palliative home care not only can improve patient outcomes but also provide financial risk protection for patients' families and reduce costs for the health care system by decreasing hospital admissions near the end of life. A national palliative care policy and strategic plan are needed to maintain progress toward universally accessible cost-effective palliative care services. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Participation of radiotherapy in interdisciplinary palliative care units--challenge and chance].

PubMed

Momm, Felix; Becker, Gerhild; Ewald, Hermann; Baumgartner, Johann; Adamietz, Irenäus A; Frommhold, Hermann

2004-02-01

In Germany, a sufficient system of palliative care does not exist. Possibilities for participation of radiooncologists in the further development of this promising part of medical action are reported. Experiences from interdisciplinary work in the field of palliative care are described. This experience is communicated for use in the actual discussion about the future of palliative care in Germany, especially in the field of radiooncology. A palliative care unit can only work in a team of different professions, which means different physicians, but also nurses, social workers, psychologists or pastors. A palliative care unit will benefit from working with radiooncologists as well as radiooncologists will do from working in the field of palliative care. In times of growing interest in and need for palliative care, radiooncologists should actively participate in the development of palliative care units in Germany. The aim of this participation should be to reasonably arrange the treatment of incurably ill patients with the chances of modern radiotherapy. Another aim should be to improve the treatment of "classic" radiation oncology patients by ideas of palliative care. The further development of palliative care in Germany should not take place without the participation of radiooncologists. This will meet the interests of palliative care and radiotherapy and-most importantly-the patients' interests.

The Richmond Agitation-Sedation Scale modified for palliative care inpatients (RASS-PAL): a pilot study exploring validity and feasibility in clinical practice.

PubMed

Bush, Shirley H; Grassau, Pamela A; Yarmo, Michelle N; Zhang, Tinghua; Zinkie, Samantha J; Pereira, José L

2014-03-31

The Richmond Agitation-Sedation Scale (RASS), which assesses level of sedation and agitation, is a simple observational instrument which was developed and validated for the intensive care setting. Although used and recommended in palliative care settings, further validation is required in this patient population. The aim of this study was to explore the validity and feasibility of a version of the RASS modified for palliative care populations (RASS-PAL). A prospective study, using a mixed methods approach, was conducted. Thirteen health care professionals (physicians and nurses) working in an acute palliative care unit assessed ten consecutive patients with an agitated delirium or receiving palliative sedation. Patients were assessed at five designated time points using the RASS-PAL. Health care professionals completed a short survey and data from semi-structured interviews was analyzed using thematic analysis. The inter-rater intraclass correlation coefficient range of the RASS-PAL was 0.84 to 0.98 for the five time points. Professionals agreed that the tool was useful for assessing sedation and was easy to use. Its role in monitoring delirium however was deemed problematic. Professionals felt that it may assist interprofessional communication. The need for formal education on why and how to use the instrument was highlighted. This study provides preliminary validity evidence for the use of the RASS-PAL by physicians and nurses working in a palliative care unit, specifically for assessing sedation and agitation levels in the management of palliative sedation. Further validity evidence should be sought, particularly in the context of assessing delirium.

Coverage and development of specialist palliative care services across the World Health Organization European Region (2005-2012): Results from a European Association for Palliative Care Task Force survey of 53 Countries.

PubMed

Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David

2016-04-01

The evolution of the provision of palliative care specialised services is important for planning and evaluation. To examine the development between 2005 and 2012 of three specialised palliative care services across the World Health Organization European Region - home care teams, hospital support teams and inpatient palliative care services. Data were extracted and analysed from two editions of the European Association for Palliative Care Atlas of Palliative Care in Europe. Significant development of each type of services was demonstrated by adjusted residual analysis, ratio of services per population and 2012 coverage (relationship between provision of available services and demand services estimated to meet the palliative care needs of a population). For the measurement of palliative care coverage, we used European Association for Palliative Care White Paper recommendations: one home care team per 100,000 inhabitants, one hospital support team per 200,000 inhabitants and one inpatient palliative care service per 200,000 inhabitants. To estimate evolution at the supranational level, mean comparison between years and European sub-regions is presented. Of 53 countries, 46 (87%) provided data. Europe has developed significant home care team, inpatient palliative care service and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of services was in 21 of 46 (46%) countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population. © The Author(s) 2015.

Evaluating Palliative Care Resources Available to the Public Using the Internet and Social Media.

PubMed

Claudio, Celeste H; Dizon, Zoelle B; October, Tessie W

2018-01-01

Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care. To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed. A cross-sectional study of "palliative care" search results. Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched. The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public. Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.

'Peace' and 'life worthwhile' as measures of spiritual well-being in African palliative care: a mixed-methods study.

PubMed

Selman, Lucy; Speck, Peter; Gysels, Marjolein; Agupio, Godfrey; Dinat, Natalya; Downing, Julia; Gwyther, Liz; Mashao, Thandi; Mmoledi, Keletso; Moll, Tony; Sebuyira, Lydia Mpanga; Ikin, Barbara; Higginson, Irene J; Harding, Richard

2013-06-10

Patients with incurable, progressive disease receiving palliative care in sub-Saharan Africa experience high levels of spiritual distress with a detrimental impact on their quality of life. Locally validated measurement tools are needed to identify patients' spiritual needs and evaluate and improve spiritual care, but up to now such tools have been lacking in Africa. The African Palliative Care Association (APCA) African Palliative Outcome Scale (POS) contains two items relating to peace and life worthwhile. We aimed to determine the content and construct validity of these items as measures of spiritual wellbeing in African palliative care populations. The study was conducted at five palliative care services, four in South Africa and one in Uganda. The mixed-methods study design involved: (1) cognitive interviews with 72 patients, analysed thematically to explore the items' content validity, and (2) quantitative data collection (n = 285 patients) using the POS and the Spirit 8 to assess construct validity. (1) Peace was interpreted according to the themes 'perception of self and world', 'relationship to others', 'spiritual beliefs' and 'health and healthcare'. Life worthwhile was interpreted in relation to 'perception of self and world', 'relationship to others' and 'identity'. (2) Conceptual convergence and divergence were also evident in the quantitative data: there was moderate correlation between peace and Spirit 8 spiritual well-being (r = 0.46), but little correlation between life worthwhile and Spirit 8 spiritual well-being (r = 0.18) (both p < 0.001). Correlations with Spirit 8 items were weak to moderate. Findings demonstrate the utility of POS items peace and life worthwhile as distinct but related measures of spiritual well-being in African palliative care. Peace and life worthwhile are brief and simple enough to be integrated into routine practice and can be used to measure this important but neglected outcome in this population.

Integration of Palliative Care Into Comprehensive Cancer Treatment at Moi Teaching and Referral Hospital in Western Kenya.

PubMed

Cornetta, Kenneth; Kipsang, Susan; Gramelspacher, Gregory; Choi, Eunyoung; Brown, Colleen; Hill, Adam B; Loehrer, Patrick J; Busakhala, Naftali; Chite Asirwa, F

2015-10-01

The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program.

Supportive and palliative care for patients with chronic mental illness including dementia.

PubMed

Lloyd-Williams, Mari; Abba, Katharine; Crowther, Jacqueline

2014-09-01

People with preexisting mental illness are known to have difficulty accessing healthcare services including palliative care and people with dementia have similar issues accessing palliative care. The review addressed the time period from January 2013 to March 2014. There were few articles addressing issues for palliative and supportive care for patients with preexisting mental health issues. The main factor that would improve care is interdisciplinary working between mental healthcare teams and palliative care teams. In contrast, there were many published articles on the palliative and supportive care needs for people with dementia. These articles included consensus statements, models of care; studies of why models of care, for example Advanced Care Planning were not being implemented; and carer reports of care in the last year of life. Urgent research is required as to how support for people with preexisting mental illness who require palliative care can be improved--excellent liaison between mental health and palliative care teams is essential. There is much research on palliative care needs for people with dementia but an apparent lack of innovative approaches to care including care of people within their family home.

[Detection of palliative care needs in an acute care hospital unit. Pilot study].

PubMed

Rodríguez-Calero, Miguel Ángel; Julià-Mora, Joana María; Prieto-Alomar, Araceli

2016-01-01

Previous to wider prevalence studies, we designed the present pilot study to assess concordance and time invested in patient evaluations using a palliative care needs assessment tool. We also sought to estimate the prevalence of palliative care needs in an acute care hospital unit. A cross-sectional study was carried out, 4 researchers (2 doctors and 2 nurses) independently assessed all inpatients in an acute care hospital unit in Manacor Hospital, Mallorca (Spain), using the validated tool NECPAL CCOMS-ICO©, measuring time invested in every case. Another researcher revised clinical recordings to analise the sample profile. Every researcher assessed 29 patients, 15 men and 14 women, mean age 74,03 ± 10.25 years. 4-observer concordance was moderate (Kappa 0,5043), tuning out to be higher between nurses. Mean time per patient evaluation was 1.9 to 7.72 minutes, depending on researcher. Prevalence of palliative care needs was 23,28%. Moderate concordance lean us towards multidisciplinary shared assessments as a method for future research. Avarage of time invested in evaluations was less than 8 minutes, no previous publications were identified regarding this variable. More than 20% of inpatients of the acute care unit were in need of palliative care. Copyright © 2015 Elsevier España, S.L.U. All rights reserved.

Palliative wound care management strategies for palliative patients and their circles of care.

PubMed

Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia

2015-03-01

To provide information about palliative wound care management strategies for palliative patients and their circles of care. This continuing education activity is intended for physicians and nurses with an interest in skin and wound care. After participating in this educational activity, the participant should be better able to: 1. Recognize study findings, assessment tools, and non-pharmacologic strategies used for patients with palliative wounds. 2. Summarize pharmacologic and dressing treatment strategies used for wound care management of palliative patients. The principles of palliative wound care should be integrated along the continuum of wound care to address the whole person care needs of palliative patients and their circles of care, which includes members of the patient unit including family, significant others, caregivers, and other healthcare professionals that may be external to the current interprofessional team. Palliative patients often present with chronic debilitating diseases, advanced diseases associated with major organ failure (renal, hepatic, pulmonary, or cardiac), profound dementia, complex psychosocial issues, diminished self-care abilities, and challenging wound-related symptoms. This article introduces key concepts and strategies for palliative wound care that are essential for interprofessional team members to incorporate in clinical practice when caring for palliative patients with wounds and their circles of care.

A palliative approach for heart failure end-of-life care

PubMed Central

Maciver, Jane; Ross, Heather J.

2018-01-01

Purpose of review The current review discusses the integration of guideline and evidence-based palliative care into heart failure end-of-life (EOL) care. Recent findings North American and European heart failure societies recommend the integration of palliative care into heart failure programs. Advance care planning, shared decision-making, routine measurement of symptoms and quality of life and specialist palliative care at heart failure EOL are identified as key components to an effective heart failure palliative care program. There is limited evidence to support the effectiveness of the individual elements. However, results from the palliative care in heart failure trial suggest an integrated heart failure palliative care program can significantly improve quality of life for heart failure patients at EOL. Summary Integration of a palliative approach to heart failure EOL care helps to ensure patients receive the care that is congruent with their values, wishes and preferences. Specialist palliative care referrals are limited to those who are truly at heart failure EOL. PMID:29135524

Costs of terminal patients who receive palliative care or usual care in different hospital wards.

PubMed

Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan

2010-11-01

In addition to the effectiveness of hospital care models for terminal patients, policy makers and health care payers are concerned about their costs. This study aims to measure the hospital costs of treating terminal patients in Belgium from the health care payer perspective. Also, this study compares the costs of palliative and usual care in different types of hospital wards. A multicenter, retrospective cohort study compared costs of palliative care with usual care in acute hospital wards and with care in palliative care units. The study enrolled terminal patients from a representative sample of hospitals. Health care costs included fixed hospital costs and charges relating to medical fees, pharmacy and other charges. Data sources consisted of hospital accountancy data and invoice data. Six hospitals participated in the study, generating a total of 146 patients. The findings showed that palliative care in a palliative care unit was more expensive than palliative care in an acute ward due to higher staffing levels in palliative care units. Palliative care in an acute ward is cheaper than usual care in an acute ward. This study suggests that palliative care models in acute wards need to be supported because such care models appear to be less expensive than usual care and because such care models are likely to better reflect the needs of terminal patients. This finding emphasizes the importance of the timely recognition of the need for palliative care in terminal patients treated in acute wards.

Evaluation of hospital palliative care teams: strengths and weaknesses of the before-after study design and strategies to improve it.

PubMed

Simon, S; Higginson, I J

2009-01-01

Hospital palliative care teams (HPCTs) are well established as multi-professional services to provide palliative care in an acute hospital setting and are increasing in number. However, there is still limited evaluation of them, in terms of efficacy and effectiveness. The gold standard method of evaluation is a randomised control trial, but because of methodological (e.g., randomisation), ethical and practical difficulties such trials are often not possible. HPCT is a complex intervention, and the specific situation in palliative care makes it challenging to evaluate (e.g., distress and cognitive impairment of patients). The quasi-experimental before-after study design has the advantage of enabling an experimental character without randomisation. But this has other weaknesses and is prone to bias, for example, temporal trends and selection bias. As for every study design, avoidance and minimisation of bias is important to improve validity. Therefore, strategies of selecting an appropriate control group or time series and applying valid outcomes and measurement tools help reducing bias and strengthen the methods. Special attention is needed to plan and define the design and applied method.

Exploring barriers to assessment of bereavement risk in palliative care: perspectives of key stakeholders.

PubMed

Sealey, Margaret; O'Connor, Moira; Aoun, Samar M; Breen, Lauren J

2015-10-14

Palliative care standards advocate support for grieving caregivers, given that some bereaved people fail to integrate their loss, experience ongoing emotional suffering and adverse health outcomes. Research shows that bereavement support tends to be delivered on an ad hoc basis without formal assessment of risk or need. To align support with need, assessment of bereavement risk is necessary. The overall aim is to develop a bereavement risk assessment model, based on a three-tiered public health model, congruent with palliative care bereavement standards for use in palliative care in Western Australia. The specific aim of this phase of the study was to explore the perspectives of key stakeholders and to highlight issues in relation to the practice of bereavement risk assessment in palliative care. Action research, a cyclical process that involves working collaboratively with stakeholders, was considered as the best method to effect feasible change in practice. The nine participants were multidisciplinary health professionals from five palliative care services, and a bereaved former caregiver. Data were obtained from participants via three 90 min group meetings conducted over five weeks. An inductive thematic analysis approach was used to analyse data following each meeting until saturation was reached, and the research team was satisfied that the themes were congruent with research aims. Existing measures were found unsuitable to assess bereavement risk in palliative care. Assessment following the patient's death presented substantial barriers, directing assessment to the pre-death period. Four themes were identified relating to issues in need of consideration to develop a risk assessment model. These were systems of care, encompassing logistics of contact with caregivers; gatekeeping; conflation between caregiver stress, burden and grief; and a way forward. These group discussions provide a data-driven explanation of the issues affecting bereavement risk assessment in palliative care settings. A number of barriers will need to be overcome before assessment can become routine practice. We recommend the development of a brief, pre-death caregiver self-report measure of bereavement risk that may empower caregivers, lead to early intervention, and allow staff to remain focused on patient care, reducing burden on staff and palliative care services.

Time from last chemotherapy to death and its correlation with the end of life care in a referral hospital

PubMed Central

Karim, Syed Mustafa; Zekri, Jamal; Abdelghany, Ehab; Dada, Reyad; Munsoor, Husna; Ahmad, Imran

2015-01-01

Background: A substantial number of cancer patients receive chemotherapy until the end of life (EoL). Various factors have been shown to be associated with receipt of chemotherapy until near death. In this study, we determine our average time from last chemotherapy to death (TLCD) and explore different factors that may be associated with decreased TLCD. Materials and Methods: A retrospective review of medical records of adult cancer patients who received chemotherapy during their illness and died in our hospital between January 2010 and January 2012 was conducted. Chi-square test and t-test were used to examine the correlation between selected factors and use of chemotherapy within 60 days of death. Multivariate analysis was used to test independent significance of factors testing positive in univariate analysis. Kaplan-Meier method was used to perform survival analysis. Results: Of the 115 cancer patients who died in the hospital, 41 (35.6%) had TLCD of 60 days or less. Patients with better performance status and those dying under medical oncology service were more likely to be in this group of patients. Univariate analysis showed that these patients were less likely to have palliative care involvement, were more likely to die of treatment related causes, and more likely to have died in the Intensive Care Unit. Multivariate analysis confirmed lack of palliative care involvement and better performance status as independent factors for TLCD less than 60 days. Survival analyses showed that patients with palliative care involvement and those dying under palliative care service were likely to have significantly longer TLCD. Conclusions: Cancer patients who have no involvement of palliative care team in their management tend to receive chemotherapy near the EoL, have more aggressive EoL care, and have higher risk of dying die from treatment related complications. Palliative care should be involved early in the care of cancer patients. PMID:25810576

Increasing Access to Palliative Care Services in the Intensive Care Unit.

PubMed

McCarroll, Caitlin Marie

The Institute of Medicine's report, Dying in America, highlights the critical need for the widespread implementation of palliative care to improve end-of-life care. Approximately 20% of all deaths in America occur during or shortly after an intensive care unit (ICU) admission; therefore, it is important for critical care units to have systems in place to facilitate patient access to palliative care services. The aim of this quality improvement (QI) project was to develop and implement a palliative care screening tool using evidence-based triggers to help increase the proportion of palliative care consultations in the ICU setting. A QI project was designed and implemented in a 14-bed medical-surgical ICU in the southeastern United States using the Plan-Do-Study-Act cycle. A palliative care screening tool was developed by an interdisciplinary team of key stakeholders in the ICU using evidence-based triggers, and staff were educated on the intervention. The proportion of ICU patients who received a palliative care consultation was compared preintervention and postintervention to determine whether the QI project contributed to an increased proportion of palliative care consultations. The proportion of palliative care consultations among patients admitted to the ICU by the pulmonary critical care team increased from 1 of 10 preintervention to 3 of 10 postintervention, resulting in a promising increase in patients receiving palliative care services consistent with evidence-based recommendations. The use of an evidence-based screening tool to trigger palliative care consultation in the ICU setting can aid in increasing the proportion of critical care patients who receive a palliative care referral. The increase in the proportion of palliative care referrals by the pulmonary critical care service warrants expansion of the intervention to include additional medical subspecialists who frequently admit patients in this ICU setting. Further assessment of the intervention is warranted to determine whether the screening tool can aid in increasing palliative care consultations for more patients admitted to the hospital's ICU.

Palliative care in northern Tanzania: doing a lot with a little.

PubMed

Bond, Melissa J; Knopp, Andrea

2018-06-02

The number of people in need of palliative care is growing worldwide, particularly in the developing world. The World Health Organization recognises palliative care as a basic human right, but there are many challenges for delivering palliative care in low- and middle-income countries. In the African continent, the African Palliative Care Association (APCA) provides guidance for political advocacy for developing palliative care programmes and has developed the APCA Palliative Outcome Score (POS), an evidence-based tool for measuring outcomes of palliative care. This article focuses on palliative care delivery in Shirati, Tanzania, located in the Rorya District in the Mara Region in northern Tanzania, highlighting the impressive work done with limited resources and despite many challenges. Recommendations for future research include evaluation of outcomes using the APCA POS, the application of mobile technology, and governmental advocacy for increased access to opioid medications, which have shown promise in broadening the reach of palliative care in the East African Community.

[Achievement and Future Direction of the PEACE Project - A National Education Project for Palliative Care Education].

PubMed

Kizawa, Yoshiyuki; Yamamoto, Ryo

2017-07-01

Although palliative care is assuming an increasingly important role in patient care, most physicians did not learn to provide palliative care during their medical training. To address these serious deficiencies in physician training in palliative care, government decided to provide basic palliative education program for all practicing cancer doctors as a national policy namely Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education(PEACE). The program was 2-days workshop based on adult learning theory and focusing on symptom management and communication. In this 9 years, 4,888 educational workshop has been held, and 93,250 physicians were trained. In prospective observational study, both knowledges and difficulties practicing palliative care were significantly improved. In 2017, the new palliative care education program will be launched including combined program of e-learning and workshop to provide tailor made education based on learner's readiness and educational needs in palliative care.

Palliative Care in Heart Failure.

PubMed

Sood, Abhinav; Dobbie, Krista; Wilson Tang, W H

2018-04-19

This review illustrates the dynamic role of palliative care in heart failure management and encapsulates the commonly utilized pharmacologic and non-pharmacologic therapeutic strategies for symptom palliation in heart failure. In addition, we provide our experience regarding patient care issues common to the domain of heart failure and palliative medicine which are commonly encountered by heart failure teams. Addition of palliative care to conventional heart failure management plan results in improvement in quality of life, anxiety, depression, and spiritual well-being among patients. Palliative care should not be confused with hospice care. Palliative care teams should be involved early in the care of heart failure patients with the aims of improving symptom palliation, discussing goals of care and improving quality of life without compromising utilization of evidence-based heart failure therapies. A consensus on the appropriate timing of involvement and evidence for many symptom palliation therapies is still emerging.

Patterns of Palliative Care Referral in Patients Admitted With Heart Failure Requiring Mechanical Ventilation.

PubMed

Wiskar, Katie J; Celi, Leo Anthony; McDermid, Robert C; Walley, Keith R; Russell, James A; Boyd, John H; Rush, Barret

2018-04-01

Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized. To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral. Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not. Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison. Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P < .01). In comparison, rate of palliative care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P < .01). In a multivariate logistic regression model, higher socioeconomic status (SES) was associated with increased access to palliative care ( P < .01). Racial differences were also observed in rates of referral to palliative care. The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.

Palliative Care in Kazakhstan.

PubMed

Kunirova, Gulnara; Shakenova, Ainur

2018-02-01

In Kazakhstan, like most ex-Soviet Union countries palliative care began in the late 1990s with the opening of the Almaty Hospice in 1999. Since that time, several palliative care services have opened in urban centers, but there is little coverage in rural areas. Palliative care has grown because of the collaborative work of Parliament leaders, Ministry of Health, local governments officials, Public Health Higher School, National Center for Health Development, academic medical institutions, oncology and palliative care experts, NGOs, Soros Foundation Kazakhstan, and international experts. A National Palliative Care Strategy provides the legislative framework that mandates the components of palliative that must be available at no cost for patients living with cancer. Palliative care courses are provided in several of the medical universities and nursing schools with practical training in local hospices who also offer seminars each year to practicing health care professionals. There is no "palliative care" or "palliative medicine" specialty in the national classifier of specialties. There are a number of palliative care specialists who participated in various training courses outside Kazakhstan. Oral morphine is not registered or available in the country, and patients must depend on injectable opioids or patches. Going forward, additional policies, increased public awareness, education of health care professionals, access to oral opioids, and more inpatient, home care, and day care services are needed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

What is palliative care?

MedlinePlus

Comfort care; End of life - palliative care; Hospice - palliative care ... The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and ...

Palliative Care in Advanced Cancer Patients: How and When?

PubMed Central

Yennurajalingam, Sriram

2012-01-01

Cancer patients develop severe physical and psychological symptoms as a result of their disease and treatment. Their families commonly suffer great emotional distress as a result of caregiving. Early palliative care access can improve symptom control and quality of life and reduce the cost of care. Preliminary results show that early palliative care access can also extend survival. Unfortunately, only a minority of cancer centers in the U.S. have the two most important resources for palliative care delivery: outpatient palliative care centers and inpatient palliative care units. In this article, we use a case presentation to discuss the impact of early palliative care access in light of the currently available evidence, and we recommend ways to improve early access to palliative care through education and research. PMID:22252934

National Trends (2009-2013) for Palliative Care Utilization for Patients Receiving Prolonged Mechanical Ventilation.

PubMed

Chatterjee, Kshitij; Goyal, Abhinav; Kakkera, Krishna; Harrington, Sarah; Corwin, Howard L

2018-05-04

Patients requiring mechanical ventilation have high morbidity and mortality. Providing palliative care services has been suggested as a way to improve comprehensive management of critically ill patients. We examined the trend in the utilization of palliative care among adults who require prolonged mechanical ventilation. Primary objectives were to determine the trend in palliative care utilization over time, predictors for palliative care utilization, and palliative care impact on hospital length of stay. Retrospective, cross-sectional study. The National Inpatient Sample data between 2009 and 2013 was used for this study. Adults (age ≥ 18 yr) who underwent prolonged mechanical ventilation (≥ 96 consecutive hr) were studied. Palliative care and mechanical ventilation were identified using the corresponding International Classification of Diseases, 9th revision, Clinical Modification, codes. A total of 1,751,870 hospitalizations with prolonged mechanical ventilation were identified between 2009 and 2013. The utilization of palliative care increased yearly from 6.5% in 2009 to 13.1% in 2013 (p < 0.001). Among the mechanically ventilated patients who died, palliative care increased from 15.9% in 2009 to 33.3% in 2013 (p < 0.001). Median hospital length of stay for patients with and without palliative care was 13 and 17 days, respectively (p < 0.001). Patients discharged to either short- or long-term care facilities had a shorter length of stay if palliative care was provided (15 vs 19 d; p < 0.001). The factors associated with a higher palliative care utilization included older age, malignancy, larger hospitals in urban areas, and teaching hospitals. Non-Caucasian race was associated with lower palliative care utilization. Among patients who undergo prolonged mechanical ventilation, palliative care utilization is increasing, particularly in patients who die during hospitalization. Using palliative care for mechanically ventilated patients who are discharged to either short- or long-term care facilities is associated with a shorter hospital length of stay.

Barriers to Access to Palliative Care

PubMed Central

Hawley, Pippa

2017-01-01

Despite significant advances in understanding the benefits of early integration of palliative care with disease management, many people living with a chronic life-threatening illness either do not receive any palliative care service or receive services only in the last phase of their illness. In this article, I explore some of the reasons for failure to provide palliative care services and recommend some strategies to overcome these barriers, emphasizing the importance of describing palliative care accurately. I provide language which I hope will help health care professionals of all disciplines explain what palliative care has to offer and ensure wider access to palliative care, early in the course of their illness. PMID:28469439

Palliative Care Office Hours for Patients with Hematologic Malignancies: An Innovative Model for Symptom Management and Education.

PubMed

Foxwell, Anessa M; Moyer, Mary E; Casarett, David J; O'Connor, Nina R

2017-10-01

Palliative care programs are experiencing rapid growth, with demand for consults surpassing staffing. Innovative models are needed to equip nonpalliative care providers to manage basic palliative care issues. To develop a novel program of palliative care office hours for hematologic oncology advanced practice providers, and to evaluate its impact on palliative care consult volume and composition. A palliative care nurse practitioner or pharmacist was available for weekday office hours to all inpatient hematologic oncology advanced practice providers at an academic medical center to offer advice on pain, nonpain symptoms, and psychosocial distress. A retrospective study looking at outcome measures after six months of office hour utilization and palliative care consults from the hematologic oncology services. Palliative care office hours had a mean duration of 16 minutes per day (range 5 to 55). A mean of 11 patients were discussed per week (range 4 to 20). Pain, nausea, and anxiety were the issues most frequently raised. Of 299 patients discussed during office hours, 44 (14.7%) subsequently required a full palliative care consult. Overall, palliative care consults from the hematologic oncology services decreased from 19.6% to 10.2% of admissions (87/445 vs. 61/594, p < 0.001) with an increase in consults for goals of care. Office hours are an efficient way to address palliative care needs when demand for palliative care consults exceeds capacity. Office hours may serve an educational function as well, enabling primary teams to manage basic palliative care issues with increasing independence over time.

Palliative Care Development in Kyrgyzstan.

PubMed

Mukambetov, Aibek; Sabyrbekova, Taalaigul; Asanalieva, Lola; Sadykov, Ilim; Connor, Stephen R

2018-02-01

Palliative care began in Kyrgyzstan in 2005 as a pilot home-based care program in Osh Cancer Center and was supported by a small group of nurses and one physician from Scotland. In 2010, the Soros Foundation-Kyrgyzstan and the Open Society Foundation's International Palliative Care Initiative began supporting work on palliative care policy, legislation, essential medicine availability, education, advocacy, and implementation. A Ministry of Health working group was established to lead this initiative, and technical assistance was provided by an international palliative care consultant. Work began with a national needs assessment, which identified the existing barriers to the provision of quality palliative care, and recommendations were made to the working group to address these challenges. Today, palliative care is included in many national health care policies and laws, a national palliative care association has been established, undergraduate medical and nursing education include elements of palliative care, oral morphine and fentanyl patches are now available in parts of the country, inpatient services exist in the National Cancer Center in Osh and Bishkek, two tuberculosis hospitals with multidrug resistant/extensively drug resistant, and home care services in Osh and Bishkek. Public information campaigns and advocacy activities continue to increase public awareness about palliative care and press government action. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Defining palliative care in cystic fibrosis: A Delphi study.

PubMed

Dellon, E P; Goggin, J; Chen, E; Sabadosa, K; Hempstead, S E; Faro, A; Homa, K

2018-05-01

The goal of palliative care is to improve quality of life for people with serious illness. We aimed to create a cystic fibrosis (CF)-specific definition of palliative care. A working group of 36 CF care providers, researchers, palliative care providers, quality improvement experts, individuals with CF, and CF caregivers completed a series of questionnaires to rate the value of each of 22 attributes of palliative care, rank top attributes to construct definitions of palliative care, and then rate proposed definitions. An average of 28 participants completed each of four questionnaires, with consistent distribution of stakeholder roles across questionnaires. Many identified overlaps in routine CF care and palliative care and highlighted the importance of a definition that feels relevant across the lifespan. Modified Delphi methodology was used to define palliative care in CF. The definition will be used as the foundation for development of CF-specific palliative care guidelines. Copyright © 2017 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.

Priorities for Evaluating Palliative Care Outcomes in Intensive Care Units.

PubMed

Bakitas, Marie; Dionne-Odom, J Nicholas; Kamal, Arif; Maguire, Jennifer M

2015-09-01

Defining the quality of intensive care unit (ICU) care when patients are dying is challenging. Palliative care has been recommended to improve outcomes of dying ICU patients; however, traditional ICU quality indicators do not always align with palliative care. Evidence suggests that some aspects of ICU care improve when palliative care is integrated; however, consensus is lacking concerning the outcomes that should be measured. Overcoming challenges to measuring palliative care will require consensus development and rigorous research on the best way to evaluate ICU palliative care services. Copyright © 2015 Elsevier Inc. All rights reserved.

'The horse has bolted I suspect': A qualitative study of clinicians' attitudes and perceptions regarding palliative rehabilitation.

PubMed

Runacres, Fiona; Gregory, Heidi; Ugalde, Anna

2017-07-01

Palliative care patients have numerous rehabilitation needs that increase with disease progression. Palliative rehabilitation practices and perceptions of palliative medicine physicians towards the role of rehabilitation are largely unstudied. To explore palliative medicine physicians' attitudes and perceptions towards rehabilitation delivered within inpatient palliative care units. Qualitative study utilizing semi-structured interviews. Transcribed interviews were analysed using thematic analysis and major themes reported as results. Australian palliative medicine physicians working in inpatient palliative care units. In total, 20 physicians participated, representing specialist palliative care services across Australia. A total of 11 (55%) were males with an average of 12.5 years' experience working in palliative care. Most participants believed rehabilitation was an important aspect of palliative care; however, few felt adequate rehabilitation programmes were available. Participants varied in their concepts of what palliative rehabilitation entailed. The term rehabilitation was seen by some as helpful (fostering hope and aiding transitions) and by others to be misleading (creating unrealistic expectations). Four key themes emerged when describing physicians' attitudes, including (1) integrating rehabilitation within palliative care, (2) the intervention, (3) possibilities and (4) the message of rehabilitation. A lack of consensus exists among palliative medicine specialists regarding the definition and scope of palliative rehabilitation. Participants generally expressed a wish to offer enhanced rehabilitation interventions, however described resource and skill-set limitations as significant barriers. Further research is required to establish an evidence base for palliative rehabilitation, to support its acceptance and widespread integration within specialist inpatient palliative care.

Negotiating the equivocality of palliative care: a grounded theory of team communicative processes in inpatient medicine.

PubMed

Ledford, Christy J W; Canzona, Mollie Rose; Cafferty, Lauren A; Kalish, Virginia B

2016-01-01

In the majority of U.S. hospitals, inpatient medicine teams make palliative care decisions in the absence of a formalized palliative system. Using a grounded theory approach, interviews with inpatient team members were systematically analyzed to uncover how participants conceptualize palliative care and how they regard the communicative structures that underlie its delivery. During analysis, Weick's model of organizing emerged as a framework that fit the data. The 39 participant inpatient team members discussed palliative care as primarily a communicative process. Themes describing the meaning of palliative care emerged around the concepts of receiver of care, timeline of care, and location of care. The emerging model included four stages in the communicative processes of inpatient palliative care: (a) interpret the need, (b) initiate the conversation, (c) integrate the processes, and (d) identify what works. In contrast to stable, focused palliative care teams or hospice care teams, which have prescribed patient populations and processes, the inpatient medicine team faces the equivocality of providing palliative care within a broader practice. This research offers a four-phase model to show how these inpatient teams communicate within this context. Implications for the provision of palliative care are discussed.

Health care professionals' attitudes regarding palliative care for patients with chronic heart failure: an interview study.

PubMed

Ziehm, Jeanette; Farin, Erik; Seibel, Katharina; Becker, Gerhild; Köberich, Stefan

2016-08-15

Even though struggling with similar symptom burden, patients with chronic heart failure (CHF) receive less palliative care than patients suffering from malignant diseases. Researchers have found that this might be related to lack of knowledge about palliative care, insufficient interprofessional communication as well as the cyclic course of disease which makes accurate prognosis difficult. However, research findings have shown that patients with CHF benefit from palliative care. As there are no studies for the German health care system this study aimed to assess health care professionals' attitudes regarding palliative care of CHF patients in order to identify barriers and facilitators for this patient group and hence to develop recommendations for improvement of CHF patients' access to palliative care in Germany. Problem-centered interviews with 23 health care professionals involved in care of CHF patients (nurses: hospital, outpatient, heart failure, PC; physicians: hospital and resident cardiologists, general practitioners) were conducted and analysed according to Mayring's qualitative content analysis. Most interviewees perceived a need for palliative care for CHF patients. Regarding barriers patients', public's, and professionals' lack of knowledge of palliative care and CHF; shortcomings in communication and cooperation of different professional groups; inability of cardiology to accept medical limits; difficult prognosis of course of disease; and patients' concerns regarding palliative care were described. Different attitudes regarding appropriate time of initiation of palliative care for CHF patients (late vs. early) were found. Furthermore, better communication and closer cooperation between different professional groups and medical disciplines as well as better education about palliative care and CHF for professionals, patients, and public were cited. Palliative care for CHF patients is a neglected topic in both practice and research and should receive more attention. Barriers to palliative care for CHF patients might be overcome by: better education for the public, patients, and professionals, closer cooperation between the different professional groups involved as well as development of a joint agreement regarding the appropriate time to administer palliative care to CHF patients. DRKS00007119 .

Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study.

PubMed

Morita, Tatsuya; Miyashita, Mitsunori; Yamagishi, Akemi; Akiyama, Miki; Akizuki, Nobuya; Hirai, Kei; Imura, Chizuru; Kato, Masashi; Kizawa, Yoshiyuki; Shirahige, Yutaka; Yamaguchi, Takuhiro; Eguchi, Kenji

2013-06-01

Improvement of palliative care is an important public health issue, but knowledge about how to deliver palliative care throughout a region remains inadequate. We used surveys and in-depth interviews to assess changes in the quality of palliative care after regional interventions and to gain insights for improvement of palliative care at a regional level. In this mixed-methods study, a comprehensive programme of interventions for regional palliative care for patients with cancer was implemented from April 1, 2008, to March 31, 2011 in Tsuruoka, Kashiwa, Hamamatsu, and Nagasaki in Japan. Interventions included education, specialist support, and networking. We surveyed patients, bereaved family members, physicians, and nurses before and after the interventions were introduced. We also did qualitative interviews with health-care professionals after the interventions were introduced. Primary endpoints were numbers of home deaths, coverage of specialist services, and patient-reported and family-reported qualities of care. This trial is registered with UMIN Clinical Trial Registry, Japan (UMIN000001274). 859 patients, 1110 bereaved family members, 911 physicians, and 2378 nurses provided analysable preintervention surveys; 857 patients, 1137 bereaved family members, 706 physicians, and 2236 nurses provided analysable postintervention surveys. Proportions of home deaths increased significantly, from 348 of 5147 (6.76%) before the intervention programme to 581 of 5546 (10.48%) after the intervention programme (p<0.0001). Furthermore, 194 of 221 (87.78%) family members of patients who died at home answered that these patients had wanted to die at home. The ratio of patients who received palliative care services to all patients who died of cancer increased significantly (from 0.31 to 0.50; p<0.0001). The patient-reported (effect size 0.14; adjusted p=0.0027) and family-reported (0.23; p<0.0001) qualities of care were significantly better after interventions than before interventions. Physician-reported and nurse-reported difficulties decreased significantly after the introduction of the interventions. Qualitative interviews showed improved communication and cooperation between health-care professionals because of greater opportunities for interactions at various levels. A regional programme of interventions could improve the quality of palliative care. Improvement of communication between health-care professionals is key to improvement of services. Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants of the Ministry of Health, Labour and Welfare of Japan. Copyright © 2013 Elsevier Ltd. All rights reserved.

Five policies to promote palliative care for patients with ESRD.

PubMed

Tamura, Manjula Kurella; Meier, Diane E

2013-10-01

Patients with ESRD experience complex and costly care that does not always meet their needs. Palliative care, which focuses on improving quality of life and relieving suffering for patients with serious illnesses, could address a large unmet need among patients with ESRD. Strengthening palliative care is a top policy priority for health reform efforts based on strong evidence that palliative care improves value. This commentary outlines palliative care policies for patients with ESRD and is directed at policymakers, dialysis providers, nephrology professional societies, accreditation organizations, and funding agencies who play a key role in the delivery and determination of quality of ESRD care. Herein we suggest policies to promote palliative care for patients with ESRD by addressing key barriers, including the lack of access to palliative care, lack of capacity to deliver palliative care, and a limited evidence base. We also provide examples of how these policies could be implemented within the existing ESRD care infrastructure.

Creating a palliative and end-of-life program in a cure-oriented pediatric setting: the zig-zag method.

PubMed

Harper, Joann; Hinds, Pamela S; Baker, Justin N; Hicks, Judy; Spunt, Sheri L; Razzouk, Bassem I

2007-01-01

Children living with and dying of advanced-stage cancer suffer physically, emotionally, and spiritually. Relief of their suffering requires comprehensive, compassionate palliative and end-of-life (EoL) care.However, an EoL care program might appear inconsistent with the mission of a pediatric oncology research center committed to seeking cures. Here the authors describe the methods used to achieve full institutional commitment to their EoL care program and those used to build the program's philosophical, research, and educational foundations after they received approval. The authors convened 10 focus groups to solicit staff perceptions of the hospital's current palliative and EoL care. They also completed baseline medical record reviews of 145 patient records to identify key EoL characteristics. The authors then crafted a vision statement and a strategic plan, implemented new research protocols,and established publication and funding trajectories. They conclude that establishing a state-of-the-art palliative and EoL program in a cure-oriented pediatric setting is achievable via consensus building and recruitment of diverse institutional resources.

Facilitating advance care planning in community palliative care: conversation starters across the client journey.

PubMed

Blackford, Jeanine; Street, Annette F

2013-03-01

This paper describes the development of a tool for palliative care nurses to initiate and facilitate advance care planning (ACP) conversations in community palliative care practice. Seven community palliative care services located across Australia participated in a multi-site action research project. Data included participant observation, individual and focus group interviews with palliative care health professionals, and medical record audit. A directed content analysis used a pre-established palliative care practice framework of referral, admission, ongoing management, and terminal/discharge care. From this framework a Conversation Starter Tool for ACP was developed. The Tool was then used in orientation and continuing nurse education programmes. It provided palliative care nurses the opportunity to introduce and progress ACP conversations.

Validation of quality indicators for the organization of palliative care: a modified RAND Delphi study in seven European countries (the Europall project).

PubMed

Woitha, Kathrin; Van Beek, Karen; Ahmed, Nisar; Jaspers, Birgit; Mollard, Jean M; Ahmedzai, Sam H; Hasselaar, Jeroen; Menten, Johan; Vissers, Kris; Engels, Yvonne

2014-02-01

Validated quality indicators can help health-care professionals to evaluate their medical practices in a comparative manner to deliver optimal clinical care. No international set of quality indicators to measure the organizational aspects of palliative care settings exists. To develop and validate a set of structure and process indicators for palliative care settings in Europe. A two-round modified RAND Delphi process was conducted to rate clarity and usefulness of a previously developed set of 110 quality indicators. In total, 20 multi-professional palliative care teams of centers of excellence from seven European countries. In total, 56 quality indicators were rated as useful. These valid quality indicators concerned the following domains: the definition of a palliative care service (2 quality indicators), accessibility to palliative care (16 quality indicators), specific infrastructure to deliver palliative care (8 quality indicators), symptom assessment tools (1 quality indicator), specific personnel in palliative care services (9 quality indicators), documentation methodology of clinical data (14 quality indicators), evaluation of quality and safety procedures (1 quality indicator), reporting of clinical activities (1 quality indicator), and education in palliative care (4 quality indicator). The modified RAND Delphi process resulted in 56 international face-validated quality indicators to measure and compare organizational aspects of palliative care. These quality indicators, aimed to assess and improve the organization of palliative care, will be pilot tested in palliative care settings all over Europe and be used in the EU FP7 funded IMPACT project.

Factors affecting rural volunteering in palliative care - an integrated review.

PubMed

Whittall, Dawn; Lee, Susan; O'Connor, Margaret

2016-12-01

To review factors shaping volunteering in palliative care in Australian rural communities using Australian and International literature. Identify gaps in the palliative care literature and make recommendations for future research. A comprehensive literature search was conducted using Proquest, Scopus, Sage Premier, Wiley online, Ovid, Cochran, Google Scholar, CINAHL and Informit Health Collection. The literature was synthesised and presented in an integrated thematic narrative. Australian Rural communities. While Australia, Canada, the United States (US) and the United Kingdom (UK) are leaders in palliative care volunteer research, limited research specifically focuses on volunteers in rural communities with the least occurring in Australia. Several interrelated factors influence rural palliative care provision, in particular an increasingly ageing population which includes an ageing volunteer and health professional workforce. Also current and models of palliative care practice fail to recognise the innumerable variables between and within rural communities such as distance, isolation, lack of privacy, limited health care services and infrastructure, and workforce shortages. These issues impact palliative care provision and are significant for health professionals, volunteers, patients and caregivers. The three key themes of this integrated review include: (i) Geography, ageing rural populations in palliative care practice, (ii) Psychosocial impact of end-end-of life care in rural communities and (iii) Palliative care models of practice and volunteering in rural communities. The invisibility of volunteers in rural palliative care research is a concern in understanding the issues affecting the sustainability of quality palliative care provision in rural communities. Recommendations for future Australian research includes examination of the suitability of current models of palliative care practice in addressing the needs of rural communities; the recruitment, training, ongoing education and support of volunteers in rural palliative care provision to ensure equitable care for all communities in Australia regardless of location. © 2016 National Rural Health Alliance Inc.

Utilization and determinants of palliative care in the trauma intensive care unit: results of a national survey.

PubMed

Karlekar, Mohana; Collier, Bryan; Parish, Abby; Olson, Lori; Elasy, Tom

2014-09-01

There is a paucity of data evaluating utilization of palliative care in trauma intensive care units. We sought to determine current indications and determinants of palliative care consultation in the trauma intensive care units. Using a cross-sectional assessment, we surveyed trauma surgeons to understand indications, benefits, and barriers trauma surgeons perceive when consulting palliative care. A total of 1232 surveys were emailed to all members of the Eastern Association for the Surgery of Trauma. A total of 362 providers responded (29% response rate). Majority of respondents were male (n = 287, 80.2%) and practiced in Level 1 (n = 278, 77.7%) trauma centers. Most common indicators for referral to palliative care were expected survival 1 week to 1 month, multisystem organ dysfunction >3 weeks, minimal neurologic responsiveness >1 week, and referral to hospice. In post hoc analysis, there was a significant difference in frequency of utilization of palliative care when respondents had access to board-certified palliative care physicians (χ(2) = 56.4, p < 0.001). Although half of the respondents (n = 199, 55.6%) reported palliative care consults beneficial all or most of the time, nearly still half (n = 174, 48.6%) felt palliative care was underutilized. Most frequent barriers to consultation included resistance from families (n = 144, 40.2%), concerns that physicians were "giving up" (n = 109, 30.4%), and miscommunication of prognosis (n = 98, 27.4%) or diagnosis (n = 58, 16.2%) by the palliative care physician. Although a plurality of trauma surgeons reported palliative care beneficial, those surveyed indicate that palliative care is underutilized. Barriers identified provide important opportunities to further appropriate utilization of palliative care services. © The Author(s) 2014.

Prevalence and Predictors of Burnout Among Hospice and Palliative Care Clinicians in the U.S

PubMed Central

Kamal, Arif H.; Bull, Janet H.; Wolf, Steven P.; Swetz, Keith M.; Shanafelt, Tait D.; Ast, Katherine; Kavalieratos, Dio; Sinclair, Christian T.; Abernethy, Amy P.

2016-01-01

Context Many clinical disciplines report high rates of burnout, which lead to low quality of care. Palliative care clinicians routinely manage patients with significant suffering, aiming to improve quality of life. As a major role of palliative care clinicians involves educating patients and caregivers regarding identifying priorities and balancing stress, we wondered how clinician self-management of burnout matches against the emotionally exhaustive nature of the work. Objectives We sought to understand the prevalence and predictors of burnout using a discipline-wide survey. Methods We asked American Academy of Hospice and Palliative Medicine clinician members to complete an electronic survey querying demographic factors, job responsibilities, and the Maslach Burnout Inventory. We performed univariate and multivariate regression analyses to identify predictors of high rates of burnout. Results We received 1357 responses (response rate 30%). Overall, we observed a burnout rate of 62%, with higher rates reported by nonphysician clinicians. Most burnout stemmed from emotional exhaustion, with depersonalization comprising a minor portion. Factors associated with higher rates of burnout include working in smaller organizations, working longer hours, being younger than 50 years, and working weekends. We did not observe different rates between palliative care clinicians and hospice clinicians. Higher rated self-management activities to mitigate burnout include participating in interpersonal relationships and taking vacations. Conclusions Burnout is a major issue facing the palliative care clinician workforce. Strategies at the discipline-wide and individual levels are needed to sustain the delivery of responsive, available, high-quality palliative care for all patients with serious illness. PMID:26620234

Improving the Quality of Palliative Care Through National and Regional Collaboration Efforts.

PubMed

Kamal, Arif H; Harrison, Krista L; Bakitas, Marie; Dionne-Odom, J Nicholas; Zubkoff, Lisa; Akyar, Imatullah; Pantilat, Steven Z; O'Riordan, David L; Bragg, Ashley R; Bischoff, Kara E; Bull, Janet

2015-10-01

The measurement and reporting of the quality of care in the field of palliation has become a required task for many health care leaders and specialists in palliative care. Such efforts are aided when organizations collaborate together to share lessons learned. The authors reviewed examples of quality-improvement collaborations in palliative care to understand the similarities, differences, and future directions of quality measurement and improvement strategies in the discipline. Three examples were identified that showed areas of robust and growing quality-improvement collaboration in the field of palliative care: the Global Palliative Care Quality Alliance, Palliative Care Quality Network, and Project Educate, Nurture, Advise, Before Life Ends. These efforts exemplify how shared-improvement activities can inform improved practice for organizations participating in collaboration. National and regional collaboratives can be used to enhance the quality of palliative care and are important efforts to standardize and improve the delivery of palliative care for persons with serious illness, along with their friends, family, and caregivers.

Current Status of Palliative Care, Education, and Research

PubMed Central

Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.

2010-01-01

Palliative and end-of-life care is changing in the United States. This dynamic field is improving the care for patients with serious and life-threatening cancer through creation of national guidelines for quality care, multidisciplinary educational offerings, research endeavors, and resources made available to clinicians. Barriers to implementing quality palliative care across cancer populations include a rapidly expanding population of older adults who will need cancer care and a decrease in the workforce available to give care. Ways to integrate current palliative care knowledge into care of patients include multidisciplinary national education and research endeavors, and clinician resources. Acceptance of palliative care as a recognized medical specialty provides a valuable resource for improvement of care. While the evidence base for palliative care is only beginning, national research support has assisted in providing support to build the knowledge foundation for appropriate palliative care. Opportunities are available for clinicians to understand and apply appropriate palliative and end-of-life care to patients with serious and life-threatening cancers. PMID:19729681

Palliative Care Professional Development for Critical Care Nurses: A Multicenter Program.

PubMed

Anderson, Wendy G; Puntillo, Kathleen; Cimino, Jenica; Noort, Janice; Pearson, Diana; Boyle, Deborah; Grywalski, Michelle; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Barbour, Susan; Turner, Kathleen; Moore, Eric; Liao, Solomon; Ferrell, Bruce; Mitchell, William; Edmonds, Kyle; Fairman, Nathan; Joseph, Denah; MacMillan, John; Milic, Michelle M; Miller, Monica; Nakagawa, Laura; O'Riordan, David L; Pietras, Christopher; Thornberry, Kathryn; Pantilat, Steven Z

2017-09-01

Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. To implement and evaluate a palliative care professional development program for ICU bedside nurses. From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs. ©2017 American Association of Critical-Care Nurses.

Palliative care in patients with haematological neoplasms: An integrative systematic review.

PubMed

Moreno-Alonso, Deborah; Porta-Sales, Josep; Monforte-Royo, Cristina; Trelis-Navarro, Jordi; Sureda-Balarí, Anna; Fernández De Sevilla-Ribosa, Alberto

2018-01-01

Palliative care was originally intended for patients with non-haematological neoplasms and relatively few studies have assessed palliative care in patients with haematological malignancies. To assess palliative care interventions in managing haematological malignancies patients treated by onco-haematology departments. Integrative systematic review with data extraction and narrative synthesis (PROSPERO #: CRD42016036240). PubMed, CINAHL, Cochrane, Scopus and Web-of-Science were searched for articles published through 30 June 2015. Study inclusion criteria were as follows: (1) published in English or Spanish and (2) containing data on palliative care interventions in adults with haematological malignancies. The search yielded 418 articles; 99 met the inclusion criteria. Six themes were identified: (1) end-of-life care, (2) the relationship between onco-haematology and palliative care departments and referral characteristics, (3) clinical characteristics, (4) experience of patients/families, (5) home care and (6) other themes grouped together as 'miscellany'. Our findings indicate that palliative care is often limited to the end-of-life phase, with late referral to palliative care. The symptom burden in haematological malignancies patients is more than the burden in non-haematological neoplasms patients. Patients and families are generally satisfied with palliative care. Home care is seldom used. Tools to predict survival in this patient population are lacking. Despite a growing interest in palliative care for haematological malignancies patients, the evidence base needs to be strengthened to expand our knowledge about palliative care in this patient group. The results of this review support the need to develop closer cooperation and communication between the palliative care and onco-haematology departments to improve patient care.

Palliative care education for medical students: Differences in course evolution, organisation, evaluation and funding: A survey of all UK medical schools.

PubMed

Walker, Steven; Gibbins, Jane; Paes, Paul; Adams, Astrid; Chandratilake, Madawa; Gishen, Faye; Lodge, Philip; Wee, Bee; Barclay, Stephen

2017-06-01

A proportion of newly qualified doctors report feeling unprepared to manage patients with palliative care and end-of-life needs. This may be related to barriers within their institution during undergraduate training. Information is limited regarding the current organisation of palliative care teaching across UK medical schools. To investigate the evolution and structure of palliative care teaching at UK medical schools. Anonymised, web-based questionnaire. Settings/participants: Results were obtained from palliative care course organisers at all 30 UK medical schools. The palliative care course was established through active planning (13/30, 43%), ad hoc development (10, 33%) or combination of approaches (7, 23%). The place of palliative care teaching within the curriculum varied. A student-selected palliative care component was offered by 29/30 (97%). All medical schools sought student feedback. The course was reviewed in 26/30 (87%) but not in 4. Similarly, a course organiser was responsible for the palliative care programme in 26/30 but not in 4. A total of 22 respondents spent a mean of 3.9 h (median 2.5)/week in supporting/delivering palliative care education (<1-16 h). In all, 17/29 (59%) had attended a teaching course or shared duties with a colleague who had done so. Course organisers received titular recognition in 18/27 (67%; no title 9 (33%); unknown 3 (11%)). An academic department of Palliative Medicine existed in 12/30 (40%) medical schools. Funding was not universally transparent. Palliative care teaching was associated with some form of funding in 20/30 (66%). Development, organisation, course evaluation and funding for palliative care teaching at UK medical schools are variable. This may have implications for delivery of effective palliative care education for medical students.

A scoping review of palliative care for children in low- and middle-income countries.

PubMed

Sasaki, Hatoko; Bouesseau, Marie-Charlotte; Marston, Joan; Mori, Rintaro

2017-11-25

Ninety-eight percent of children needing palliative care live in low- and middle-income countries (LMICs), and almost half of them live in Africa. In contrast to the abundance of data on populations in high income countries, the current data on populations in LMICs is woefully inadequate. This study aims to identify and summarize the published literature on the need, accessibility, quality, and models for palliative care for children in LMICs. A scoping review was performed following the method of Arksey and O'Malley. Systematic searches were conducted on PubMed and Google Scholar using the main keywords, 'children AND palliative care OR terminal care OR hospice OR end of life AND developing countries OR LMICs.' Additional publications were obtained by handsearching. Papers were only included if they reported on the need, accessibility, quality, and models for palliative care for children in LMICs. Fifteen papers met the inclusion criteria for review. Of these, 10 assessed need, seven examined availability and/or accessibility, one assessed quality, and one examined the models. We found an urgent need for palliative care, particularly in the training for health workers and improving poor availability and/or accessibility to palliative care in terms of factors such as medication and bereavement support. The best practice models demonstrated feasibility and sustainability through cooperation with governments and community organizations. The quality of pain management and emotional support was lower in LMICs compared to HICs. Although we found limited evidence in this review, we identified common challenges such as the need for further training for health workers and greater availability of opioid analgesics. While efforts to change the current systems and laws applying to children in LMICs are important, we should also tackle underlying factors including the need to raise awareness about palliative care in public health and improve the accuracy of data collection.

Provision of Palliative Care Services by Family Physicians Is Common.

PubMed

Ankuda, Claire K; Jetty, Anuradha; Bazemore, Andrew; Petterson, Stephen

2017-01-01

Provision of palliative care services by primary care physicians is increasingly important with an aging population, but it is unknown whether US primary care physicians see themselves as palliative practitioners. This study used cross-sectional analysis of data from the 2013 American Board of Family Medicine Maintenance of Certification Demographic Survey. Of 10,894 family physicians, 33.1% (n = 3609) report providing palliative care. Those providing palliative care are significantly more likely to provide non-clinic-based services such as care in nursing homes, home visits, and hospice. Controlling for other characteristics, physicians reporting palliative care provision are significantly ( P < .05) more likely to be older, white, male, rural, and practicing in a patient-centered medical home. One third of family physicians recertifying in 2013 reported providing palliative care, with physician and practice characteristics driving reporting palliative care provision. © Copyright 2017 by the American Board of Family Medicine.

Lecture Cancelled

Cancer.gov

Dr. Jennifer Temel is an Associate Professor of Medicine at Harvard Medical School and Director of the Cancer Outcomes Research Program at the Massachusetts General Hospital (MGH) Cancer Center.  She is also the Clinical Director of Thoracic Oncology at the MGH Cancer Center and provides oncology care for patients with lung and esophageal cancer. Her research focuses on improving palliative, supportive and end of life care for patients with cancer and their families.  She has received funding from the National Cancer Institute, the National Institute of Nursing Research, the Patient Centered Outcomes Research Institute, and the American Cancer Society to study novel methods of improving the care of cancer patients. One of the main focuses of Dr. Temel’s research involves studying the integration of palliative and oncology care in patients with advanced cancers.  Her work in this area has been published in the New England Journal of Medicine, the Journal of Clinical Oncology, and JAMA.  She was awarded a National Cancer Institute mid-career development award to mentor others in palliative and end of life care in oncology and serves as the co-Principal Investigator on a National Cancer Institute grant to conduct a workshop on methods in supportive oncology research for junior faculty. Dr. Temel recently received the American Academy of Hospice and Palliative Medicine Award for Excellence in Scientific Research, the American Cancer Society Pathfinder Award for her impact on the field of palliative care, and the American Psychosocial Oncology Society Award for Outstanding Education and Training.

Physician Perspectives on Palliative Care for Children With Neuroblastoma: An International Context.

PubMed

Balkin, Emily M; Thompson, Daria; Colson, K Ellicott; Lam, Catherine G; Matthay, Katherine K

2016-05-01

Studies have shown that children with cancer globally lack access to palliative care. Little is known regarding physicians' perceptions of palliative care, treatment access, and self-reported competence in providing palliative care. Members of the Global Neuroblastoma Network (online tumor board) were surveyed. Eighty-three respondents met inclusion criteria; 53 (64%) completed the survey. Most respondents trained in high-income countries (HIC) but practice in low- and middle-income countries (LMIC), and care for more than five patients with neuroblastoma annually. WHO Essential Medicines in palliative care varied in availability, with incomplete access across LMIC centers. Nonpharmacologic therapies were inconsistently available. Contrary to international definitions, 17% of respondents inappropriately considered palliative care as that initiated only after curative therapy is stopped. Mean physician competence composite score (Likert scale 1-5, 5 = very competent) in providing symptomatic relief and palliative care across phases of care was 2.93 (95% CI 2.71-3.22). Physicians reported significantly greater competence in symptom management during cure-directed therapy than during end-of-life (P = 0.02) or when patients are actively dying (P = 0.007). Practicing in HIC, prior palliative care training, having access to radiotherapy, and not having to turn patients away due to bed shortages were significantly predictive of perceived competence in providing palliative care at end of life. An international sample identified gaps in treatment and palliative care service availability, in understanding the definition of palliative care, and in self-reported competence in providing palliative care. Increased perceived competence was associated with training, which supports the need for increased palliative care education and advocacy, especially in LMIC. © 2016 Wiley Periodicals, Inc.

GP and nurses' perceptions of how after hours care for people receiving palliative care at home could be improved: a mixed methods study.

PubMed

Tan, Heather M; O'Connor, Margaret M; Miles, Gail; Klein, Britt; Schattner, Peter

2009-09-14

Primary health care providers play a dominant role in the provision of palliative care (PC) in Australia but many gaps in after hours service remain. In some rural areas only 19% of people receiving palliative care achieve their goal of dying at home. This study, which builds on an earlier qualitative phase of the project, investigates the gaps in care from the perspective of general practitioners (GPs) and PC nurses. Questionnaires, developed from the outcomes of the earlier phase, and containing both structured and open ended questions, were distributed through Divisions of General Practice (1 urban, 1 rural, 1 mixed) to GPs (n = 524) and through a special interest group to palliative care nurses (n = 122) in both rural and urban areas. Questionnaires were returned by 114 GPs (22%) and 52 nurses (43%). The majority of GPs were associated with a practice which provided some after hours services but PC was not a strong focus for most. This was reflected in low levels of PC training, limited awareness of the existence of after hours triage services in their area, and of the availability of Enhanced Primary Care (EPC) Medicare items for care planning for palliative patients. However, more than half of both nurses and GPs were aware of accessible PC resources.Factors such as poor communication and limited availability of after hours services were identified the as most likely to impact negatively on service provision. Strategies considered most likely to improve after hours services were individual patient protocols, palliative care trained respite carers and regular multidisciplinary meetings that included the GP. While some of the identified gaps can only be met by long term funding and policy change, educational tools for use in training programs in PC for health professionals, which focus on the utilisation of EPC Medicare items in palliative care planning, the development of advance care plans and good communication between members of multidisciplinary teams, which include the GP, may enhance after hours service provision for patients receiving palliative care at home. The role of locums in after PC is an area for further research.

Methodological considerations for researching the financial costs of family caregiving within a palliative care context.

PubMed

Gardiner, Clare; Allen, Ruth; Moeke-Maxwell, Tess; Robinson, Jackie; Gott, Merryn

2016-12-01

The financial impact of family caregiving in a palliative care context has been identified as an issue which requires further research. However, little is known about how research should be conducted in this area. The aim of this study was to explore the opinions of family caregivers in New Zealand regarding the need to conduct research relating to the financial costs of family caregiving and to explore their perspectives on acceptable and feasible methods of data collection. A qualitative study design was adopted. Semistructured interviews were conducted with 30 family caregivers who were either currently caring for a person with palliative care needs or had done so in the past year. All participants felt that research relating to the costs of family caregiving within a palliative care context was important. There was little consensus regarding the most appropriate methods of data collection and administration. Online methods were preferred by many participants, although face-to-face methods were particularly favoured by Ma¯ori participants. Both questionnaires and cost diaries were felt to have strengths and weaknesses. Prospective longitudinal designs are likely to be most appropriate for future research, in order to capture variations in costs over time. The lack of consensus for a single preferred method makes it difficult to formulate specific recommendations regarding methods of data collection; providing participants with options for methods of completion may therefore be appropriate. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Resources for Educating, Training, and Mentoring All Physicians Providing Palliative Care.

PubMed

Downar, James

2018-01-01

This article presents a rapid review of the published literature and available resources for educating Canadian physicians to provide palliative and end-of-life care. Several key messages emerge from the review. First, there are many palliative care educational resources already available for Canadian physicians. Second, the many palliative care education resources are often not used in physician training. Third, we know that some palliative care educational interventions are inexpensive and scalable, while others are costly and time-consuming; we know very little about which palliative care educational interventions impact physician behavior and patient care. Fourth, two palliative care competency areas in particular can be readily taught: symptom management and communication skill (e.g., breaking bad news and advance care planning). Fifth, palliative care educational interventions are undermined by the "hidden curriculum" in medical education; interventions must be accompanied by continuing education and faculty development to create lasting change in physician behavior. Sixth, undergraduate and postgraduate medical training is shifting from a time-based training paradigm to competency-based training and evaluation. Seventh, virtually every physician in Canada should be able to provide basic palliative care; physicians in specialized areas of practice should receive palliative care education that is tailored to their area, rather than generic educational interventions. For each key message, one or more implications are provided, which can serve as recommendations for a framework to improve palliative care as a whole in Canada.

The Changing Role of Palliative Care in the ICU

PubMed Central

Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.

2015-01-01

Objectives Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. Data Sources We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. Study Selection Selected studies included all English-language articles concerning adult patients using the search terms "intensive care" or "critical care" with "palliative care," "supportive care," "end-of-life care," or "ethics." Data Extraction After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. Data Synthesis Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and families face challenges after discharge from intensive care. Conclusions Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures. PMID:25167087

Palliative Care, Hospice, and Advance Care Planning: Views of People Living with HIV and Other Chronic Conditions.

PubMed

Slomka, Jacquelyn; Prince-Paul, Maryjo; Webel, Allison; Daly, Barbara J

2016-01-01

People living with HIV (PLWH) who survive to older adulthood risk developing multiple chronic medical conditions. Health policymakers recognize the role of early palliative care and advance care planning in improving health quality for at-risk populations, but misperceptions about palliative care, hospice, and advance care planning are common. Before testing a program of early palliative care for PLWH and other chronic conditions, we conducted focus groups to elicit perceptions of palliative care, hospice, and advance care planning in our target population. Overall, participants were unfamiliar with the term palliative care, confused concepts of palliative care and hospice, and/or associated hospice care with dying. Participants misunderstood advance care planning, but valued communication about health care preferences. Accepting palliative care was contingent on distinguishing it from hospice and historical memories of HIV and dying. Provision of high-quality, comprehensive care will require changing public perceptions and individuals' views in this high-risk population. Copyright © 2016 Association of Nurses in AIDS Care. Published by Elsevier Inc. All rights reserved.

An Innovative Role for Faith Community Nursing: Palliative Care Ministry.

PubMed

Lentz, Judy C

Although the specialty of palliative nursing and palliative care continues to grow in hospital and outpatient settings, a paucity of home-based palliative services remains. This article discusses a new paradigm of faith-based palliative care ministry using faith community nurses (FCNs). Under the leadership of a palliative care doula (a nurse expert in palliative care), nurses in the faith community can offer critical support to those with serious illness. Models such as this provide stimulating content for FCN practice and opportunity to broaden health ministry within faith communities.

Palliative Care in Moldova.

PubMed

Gherman, Liliana; Pogonet, Vadim; Soltan, Viorel; Isac, Valerian

2018-02-01

The article describes the important steps of palliative care development in Moldova, the current status, main achievements and challenges to be addressed in the future. It covers background information, policy development, medicines access and availability, education, and training, as well as services' provision. Palliative care development in Moldova registered real progress in spite of frequent political changes at governmental levels and difficulties to ensure the continuity of the development process during the last 10 years. However, the unmet need for palliative care for patients with life-limiting illnesses from different disease and age groups remains high. Further effort is needed to increase the availability and access to opioid analgesics and other essential palliative care medications. Government commitment and support, together with adequate funding, trained and educated health care professionals, and easy access to and availability of medicines, are essential to ensure the successful implementation of palliative care services nationwide, and to deliver the most appropriate qualitative palliative care for patients. To speed up palliative care development, a national strategy on palliative care development should be considered. The authors took part and continue to be involved in different ways in palliative care development in the country. Copyright © 2017. Published by Elsevier Inc.

Implementation of palliative care as a mandatory cross-disciplinary subject (QB13) at the Medical Faculty of the Heinrich-Heine-University Düsseldorf, Germany

PubMed Central

Schulz, Christian; Wenzel-Meyburg, Ursula; Karger, André; Scherg, Alexandra; in der Schmitten, Jürgen; Trapp, Thorsten; Paling, Andreas; Bakus, Simone; Schatte, Gesa; Rudolf, Eva; Decking, Ulrich; Ritz-Timme, Stephanie; Grünewald, Matthias; Schmitz, Andrea

2015-01-01

Background: By means of the revision of the Medical Licensure Act for Physicians (ÄAppO) in 2009, undergraduate palliative care education (UPCE) was incorporated as a mandatory cross sectional examination subject (QB13) in medical education in Germany. Its implementation still constitutes a major challenge for German medical faculties. There is a discrepancy between limited university resources and limited patient availabilities and high numbers of medical students. Apart from teaching theoretical knowledge and skills, palliative care education is faced with the particular challenge of imparting a professional and adequate attitude towards incurably ill and dying patients and their relatives. Project description: Against this background, an evidence-based longitudinal UPCE curriculum was systematically developed following Kern’s Cycle [1] and partly implemented and evaluated by the students participating in the pilot project. Innovative teaching methods (virtual standardised/simulated patient contacts, e-learning courses, interdisciplinary and interprofessional collaborative teaching, and group sessions for reflective self-development) aim at teaching palliative care-related core competencies within the clinical context and on an interdisciplinary and interprofessional basis. Results: After almost five years of development and evaluation, the UPCE curriculum comprises 60 teaching units and is being fully implemented and taught for the first time in the winter semester 2014/15. The previous pilot phases were successfully concluded. To date, the pilot phases (n=26), the subproject “E-learning in palliative care” (n=518) and the blended-learning elective course “Communication with dying patients” (n=12) have been successfully evaluated. Conclusion: All conducted development steps and all developed programmes are available for other palliative care educators (Open Access). The integrated teaching formats and methods (video, e-learning module, interprofessional education, group sessions for reflexive self-development) and their evaluations are intended to make a contribution to an evidence-based development of palliative care curricula in Germany. PMID:25699109

Care of the Critically Ill Burn Patient. An Overview from the Perspective of Optimizing Palliative Care.

PubMed

Ray, Daniel E; Karlekar, Mohana B; Crouse, Donnelle L; Campbell, Margaret; Curtis, J Randall; Edwards, Jeffrey; Frontera, Jennifer; Lustbader, Dana R; Mosenthal, Anne C; Mulkerin, Colleen; Puntillo, Kathleen A; Weissman, David E; Boss, Renee D; Brasel, Karen J; Nelson, Judith E

2017-07-01

Burn specialists have long recognized the need for and have role modeled a comprehensive approach incorporating relief of distress as part of care during critical illness. More recently, palliative care specialists have become part of the healthcare team in many U.S. hospitals, especially larger academic institutions that are more likely to have designated burn centers. No current literature describes the intersection of palliative care and burn care or integration of primary and specialist palliative care in this unique context. This Perspective gives an overview of burn care; focuses on pain and other symptoms in burn intensive care unit settings; addresses special needs of critically ill burned patients, their families, and clinicians for high-quality palliative care; and highlights potential benefits of integrating primary and specialist palliative care in burn critical care. MEDLINE and the Cumulative Index to Nursing and Allied Health Literature were searched, and an e-mail survey was used to obtain information from U.S. Burn Fellowship Program directors about palliative medicine training. The Improving Palliative Care in the Intensive Care Unit Project Advisory Board synthesized published evidence with their own research and clinical experience in preparing this article. Mortality and severe morbidity for critically ill burned patients remains high. American Burn Association guidelines lay the foundation for a robust system of palliative care delivery, embedding palliative care principles and processes in intensive care by burn providers. Understanding basic burn care, challenges for symptom management and communication, and the culture of the particular burn unit, can optimize quality and integration of primary and specialist palliative care in this distinctive setting.

[Implementation of a palliative care concept in a geriatric acute care hospital].

PubMed

Hagg-Grün, U; Lukas, A; Sommer, B-N; Klaiber, H-R; Nikolaus, T

2010-12-01

To integrate palliative care patients into an acute geriatric ward requires extensive and continuous education and preparation of all participating professionals. It can be a lengthy process to integrate palliative care concepts despite cooperation of the hospital administration. The group of patients to be integrated differs from the patients of regular geriatric wards because of a higher percentage of relatively young oncologic patients and they differ from a regular palliative ward because about 50% are non-oncologic patients, while the average age is much higher than in normal palliative care. It is possible to integrate specialized palliative care into a regular geriatric ward. Patients admitted without palliative intention will benefit the most from ward-integrated palliative care if the treatment aim turns this way. Ward-integrated palliative care can be an integral part of treating geriatric patients in addition to acute geriatric medicine, rehabilitation, and prevention. It can also provide caretakers and patients with the benefits from continuity of treatment and care.

[Integration and utilization of physiotherapy in hospice and palliative care : A survey on clinical practice in Germany].

PubMed

Woitha, K; Schneider, N; Wünsch, A; Wiese, B; Fimm, S; Müller-Mundt, G

2017-02-01

Palliative care is an approach that improves the quality of life of patients with incurable and progressive illnesses; therefore, in these situations physiotherapy can play an important role. This study was carried out to examine the integration and utilization of physiotherapy in palliative and hospice care services in Germany. A cross-sectional survey including all palliative care units, specialized outpatient palliative care teams and hospices in Germany (n = 680) in 2013 was carried out. The response rate was 43.5 % (n = 296). Physiotherapy is predominantly applied in palliative care units (79 %) but rarely in hospices (38 %) and outpatient palliative care teams (30 %). A structured physiotherapeutic assessment is rarely carried out even on palliative care units (26 %). Positive effects of physiotherapy are especially described for symptoms, such as edema, pain, constipation and dyspnea. Despite its significant potential to relieve symptoms, physiotherapy is not systematically integrated into palliative care practice in Germany.

Intervention for depression among palliative care patients and their families: A study protocol for evaluation of a training program for professional care staff.

PubMed

Hallford, David J; McCabe, Marita P; Mellor, David; Davison, Tanya E; Goldhammer, Denisa L; George, Kuruvilla; Storer, Shane

2011-06-13

Clinical depression is highly prevalent yet under-detected and under-treated in palliative care settings and is associated with a number of adverse medical and psychological outcomes for patients and their family members. This article presents a study protocol to evaluate a training intervention for non-physician palliative care staff to improve the recognition of depression and provide support for depressed patients and their family members. Details of the hypotheses and expected outcomes, study design, training program development and evaluation measures are described. A randomised controlled trial will be implemented across two palliative care services to evaluate the "Training program for professional carers to recognise and manage depression in palliative care settings". Pre-, post- and three-month follow-up data will be collected to assess: the impact of the training on the knowledge, attitudes, self-efficacy and perceived barriers of palliative care staff when working with depression; referral rates for depression; and changes to staff practices. Quantitative and qualitative methods, in the form of self-report questionnaires and interviews with staff and family members, will be used to evaluate the effectiveness of the intervention. This study will determine the effectiveness of an intervention that aims to respond to the urgent need for innovative programs to target depression in the palliative care setting. The expected outcome of this study is the validation of an evidence-based training program to improve staff recognition and appropriate referrals for depression, as well as improve psychosocial support for depressed patients and their family members. Australia and New Zealand Clinical Trials Register (ANZCTR): ACTRN12610000183088.

A Survey to Evaluate Facilitators and Barriers to Quality Measurement and Improvement: Adapting Tools for Implementation Research in Palliative Care Programs.

PubMed

Dy, Sydney M; Al Hamayel, Nebras Abu; Hannum, Susan M; Sharma, Ritu; Isenberg, Sarina R; Kuchinad, Kamini; Zhu, Junya; Smith, Katherine; Lorenz, Karl A; Kamal, Arif H; Walling, Anne M; Weaver, Sallie J

2017-12-01

Although critical for improving patient outcomes, palliative care quality indicators are not yet widely used. Better understanding of facilitators and barriers to palliative care quality measurement and improvement might improve their use and program quality. Development of a survey tool to assess palliative care team perspectives on facilitators and barriers to quality measurement and improvement in palliative care programs. We used the adapted Consolidated Framework for Implementation Research to define domains and constructs to select instruments. We assembled a draft survey and assessed content validity through pilot testing and cognitive interviews with experts and frontline practitioners for key items. We analyzed responses using a constant comparative process to assess survey item issues and potential solutions. We developed a final survey using these results. The survey includes five published instruments and two additional item sets. Domains include organizational characteristics, individual and team characteristics, intervention characteristics, and process of implementation. Survey modules include Quality Improvement in Palliative Care, Implementing Quality Improvement in the Palliative Care Program, Teamwork and Communication, Measuring the Quality of Palliative Care, and Palliative Care Quality in Your Program. Key refinements from cognitive interviews included item wording on palliative care team members, programs, and quality issues. This novel, adaptable instrument assesses palliative care team perspectives on barriers and facilitators for quality measurement and improvement in palliative care programs. Next steps include evaluation of the survey's construct validity and how survey results correlate with findings from program quality initiatives. Copyright © 2017 American Academy of Hospice and Palliative Medicine. All rights reserved.

Study protocol: evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH study) - work package II: palliative care for pediatric patients.

PubMed

Ulrich, Lisa-R; Gruber, Dania; Hach, Michaela; Boesner, Stefan; Haasenritter, Joerg; Kuss, Katrin; Seipp, Hannah; Gerlach, Ferdinand M; Erler, Antje

2018-01-05

In 2007, the European Association of Palliative Care (EAPC) provided a comprehensive set of recommendations and standards for the provision of adequate pediatric palliative care. A number of studies have shown deficits in pediatric palliative care compared to EAPC standards. In Germany, pediatric palliative care patients can be referred to specialized outpatient palliative care (SOPC) services, which are known to enhance quality of life, e.g. by avoiding hospitalization. However, current regulations for the provision of SOPC in Germany do not account for the different circumstances and needs of children and their families compared to adult palliative care patients. The "Evaluation of specialized outpatient palliative care (SOPC) in the German state of Hesse (ELSAH)" study aims to perform a needs assessment for pediatric patients (children, adolescents and young adults) receiving SOPC. This paper presents the study protocol for this assessment (work package II). The study uses a sequential mixed-methods study design with a focus on qualitative research. Data collection from professional and family caregivers and, as far as possible, pediatric patients, will involve both a written questionnaire based on European recommendations for pediatric palliative care, and semi-structured interviews. Additionally, professional caregivers will take part in focus group discussions and participatory observations. Interviews and focus groups will be tape- or video-recorded, transcribed verbatim and analyzed in accordance with the principles of grounded theory (interviews) and content analysis (focus groups). A structured field note template will be used to record notes taken during the participatory observations. Statistical Package for Social Sciences (SPSS, version 22 or higher) will be used for descriptive statistical analyses. The qualitative data analyses will be software-assisted by MAXQDA (version 12 or higher). This study will provide important information on what matters most to family caregivers and pediatric patients receiving SOPC. The results will add valuable knowledge to the criteria that distinguish SOPC for pediatric from SOPC for adult patients, and will provide an indication of how the German SOPC rule of procedure can be optimized to satisfy the special needs of pediatric patients. Internet Portal of the German Clinical Trials Register ( www.germanctr.de , DRKS-ID: DRKS00012431).

Cannabis in End-of-Life Care: Examining Attitudes and Practices of Palliative Care Providers.

PubMed

Luba, Rachel; Earleywine, Mitch; Farmer, Stacey; Slavin, Melissa

2018-05-01

Medical cannabis research has become quite extensive, with indications ranging from glaucoma to chemotherapy-induced nausea. Despite increased interest in cannabis' potential medical uses, research barriers, cannabis legislation, stigma, and lack of dissemination of data contribute to low adoption for some medical populations. Of interest, cannabis use appears low in palliative care settings, with few guidelines available to palliative care providers. The present study sought to examine the attitudes, beliefs, and practices of palliative care providers regarding the use of cannabis for terminally ill patients. Palliative care providers (N = 426) completed a one-time online survey assessing these attitudes, beliefs, and practices. Results demonstrated that palliative care providers endorse cannabis for a wide range of palliative care symptoms, end-of-life care generally, and as an adjuvant medication. Nevertheless, the gap between these beliefs and actual recommendation or prescription appears vast. Many who support the use of cannabis in palliative care do not recommend it as a treatment. These data suggest recommendations for healthcare providers and palliative care organizations.

Integrated palliative care networks from the perspectives of patients: A cross-sectional explorative study in five European countries.

PubMed

den Herder-van der Eerden, Marlieke; Ebenau, Anne; Payne, Sheila; Preston, Nancy; Radbruch, Lukas; Linge-Dahl, Lisa; Csikos, Agnes; Busa, Csilla; Van Beek, Karen; Groot, Marieke; Vissers, Kris; Hasselaar, Jeroen

2018-06-01

Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare professionals' perspectives. (1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction. Cross-sectional explorative design. We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands. About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians ( p < 0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient's care networks varied across countries. Perceived integration was significantly associated with overall satisfaction. Palliative care professionals are not always present or recognised as such in patients' care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.

World Health Organization Public Health Model: A Roadmap for Palliative Care Development.

PubMed

Callaway, Mary V; Connor, Stephen R; Foley, Kathleen M

2018-02-01

The Open Society Foundation's International Palliative Care Initiative (IPCI) began to support palliative care development in Central and Eastern Europe and the Former Soviet Union in 1999. Twenty-five country representatives were invited to discuss the need for palliative care in their countries and to identify key areas that should be addressed to improve the care of adults and children with life-limiting illnesses. As a public health concern, progress in palliative care requires integration into health policy, education and training of health care professionals, availability of essential pain relieving medications, and health care services. IPCI created the Palliative Care Roadmap to serve as a model for government and/or nongovernment organizations to use to frame the necessary elements and steps for palliative care integration. The roadmap includes the creation of multiple Ministry of Health-approved working groups to address: palliative care inclusion in national health policy, legislation, and finance; availability of essential palliative care medications, especially oral opioids; education and training of health care professionals; and the implementation of palliative care services at home or in inpatient settings for adults and children. Each working group is tasked with developing a pathway with multiple signposts as indicators of progress made. The roadmap may be entered at different signposts depending upon the state of palliative care development in the country. The progress of the working groups often takes place simultaneously but at variable rates. Based on our experience, the IPCI Roadmap is one possible framework for palliative care development in resource constrained countries but requires both health care professional engagement and political will for progress to be made. Copyright © 2017. Published by Elsevier Inc.

Palliative Care

MedlinePlus

... can be provided along with curative treatment. Improves Quality of Life Palliative care teams specialize in treating people suffering ... In short, palliative care will help improve your quality of life. Close Communication The palliative care team will also ...

Palliative Care Training in Surgical Oncology and Hepatobiliary Fellowships: A National Survey of Program Directors.

PubMed

Larrieux, Gregory; Wachi, Blake I; Miura, John T; Turaga, Kiran K; Christians, Kathleen K; Gamblin, T Clark; Peltier, Wendy L; Weissman, David E; Nattinger, Ann B; Johnston, Fabian M

2015-12-01

Despite previous literature affirming the importance of palliative care training in surgery, there is scarce literature about the readiness of Surgical Oncology and hepatopancreaticobiliary (HPB) fellows to provide such care. We performed the first nationally representative study of surgical fellowship program directors' assessment of palliative care education. The aim was to capture attitudes about the perception of palliative care and disparity between technical/clinical education and palliative care training. A survey originally used to assess surgical oncology and HPB surgery fellows' training in palliative care, was modified and sent to Program Directors of respective fellowships. The final survey consisted of 22 items and was completed online. Surveys were completed by 28 fellowship programs (70 % response rate). Only 60 % offered any formal teaching in pain management, delivering bad news or discussion about prognosis. Fifty-eight percent offered formal training in basic communication skills and 43 % training in conducting family conferences. Resources were available, with 100 % of the programs having a palliative care consultation service, 42 % having a faculty member with recognized clinical interest/expertise in palliative care, and 35 % having a faculty member board-certified in Hospice and Palliative Medicine. Our data shows HPB and surgical oncology fellowship programs are providing insufficient education and assessment in palliative care. This is not due to a shortage of faculty, palliative care resources, or teaching opportunities. Greater focus one valuation and development of strategies for teaching palliative care in surgical fellowships are needed.

Palliative care nursing education features more prominently in 2015 than 2005: Results from a nationwide survey and qualitative analysis of curricula.

PubMed

Martins Pereira, Sandra; Hernández-Marrero, Pablo

2016-10-01

Making palliative care accessible to all citizens who are in need of this type of care requires effective policies and education. Moreover, healthcare professionals have an ethical and legal responsibility to ensure quality palliative care. Nevertheless, palliative care has had traditionally a limited emphasis in healthcare professionals' undergraduate education. To study the current status of palliative care education in nursing undergraduate curricula and compare 2005 and 2015 findings. An online survey was sent to all state schools providing nursing undergraduate education in Portugal (N = 21). The survey assessed if and how palliative care was included in the curricula, and whether or not national and international recommendations for palliative care nursing education were followed. Further analysis included the content of available curricula/syllabi. A total of 19 schools completed the survey (90% of response rate). These institutions are geographically dispersed and representative of state nursing educational institutions in Portugal. In 2015, all participant schools integrated palliative care in their curricula; nine schools had palliative care as an independent curricular unit (an 800% increase compared to 2005). While in 2005, only 14 out of 23 (61%) schools included palliative care explicitly in their curricula; in 2015, all 19 participant schools did so. National and international recommendations were followed. The inclusion of palliative care within nursing undergraduate curricula strongly increased from 2005 to 2015. Further research is needed to understand the contribution of education in the access, care provision, quality and development of palliative care in this country. © The Author(s) 2016.

Elements of effective palliative care models: a rapid review

PubMed Central

2014-01-01

Background Population ageing, changes to the profiles of life-limiting illnesses and evolving societal attitudes prompt a critical evaluation of models of palliative care. We set out to identify evidence-based models of palliative care to inform policy reform in Australia. Method A rapid review of electronic databases and the grey literature was undertaken over an eight week period in April-June 2012. We included policy documents and comparative studies from countries within the Organisation for Economic Co-operation and Development (OECD) published in English since 2001. Meta-analysis was planned where >1 study met criteria; otherwise, synthesis was narrative using methods described by Popay et al. (2006). Results Of 1,959 peer-reviewed articles, 23 reported systematic reviews, 9 additional RCTs and 34 non-randomised comparative studies. Variation in the content of models, contexts in which these were implemented and lack of detailed reporting meant that elements of models constituted a more meaningful unit of analysis than models themselves. Case management was the element most consistently reported in models for which comparative studies provided evidence for effectiveness. Essential attributes of population-based palliative care models identified by policy and addressed by more than one element were communication and coordination between providers (including primary care), skill enhancement, and capacity to respond rapidly to individuals’ changing needs and preferences over time. Conclusion Models of palliative care should integrate specialist expertise with primary and community care services and enable transitions across settings, including residential aged care. The increasing complexity of care needs, services, interventions and contextual drivers warrants future research aimed at elucidating the interactions between different components and the roles played by patient, provider and health system factors. The findings of this review are limited by its rapid methodology and focus on model elements relevant to Australia’s health system. PMID:24670065

"They Shouldn't Be Coming to the ED, Should They?": A Descriptive Service Evaluation of Why Patients With Palliative Care Needs Present to the Emergency Department.

PubMed

Green, Emilie; Ward, Sarah; Brierley, Will; Riley, Ben; Sattar, Henna; Harris, Tim

2017-12-01

Patients with palliative care needs frequently attend the emergency department (ED). There is no international agreement on which patients are best cared for in the ED, compared to the primary care setting or direct admission to the hospital. This article presents the quantitative phase of a mixed-methods service evaluation, exploring the reasons why patients with palliative care needs present to the ED. This is a single-center, observational study including all patients under the care of a specialist palliative care team who presented to the ED over a 10-week period. Demographic and clinical data were collected from electronic health records. A total of 105 patients made 112 presentations to the ED. The 2 most common presenting complaints were shortness of breath (35%) and pain (28%). Eighty-three percent of presentations required care in the ED according to a priori defined criteria. They either underwent urgent investigation or received immediate interventions that could not be delivered in another setting, were referred by a health-care professional, or were admitted. Findings challenge the misconception that patients known to a palliative care team should be cared for outside the ED. The importance and necessity of the ED for patients in their last years of life has been highlighted, specifically in terms of managing acute, unpredictable crises. Future service provision should not be based solely on a patient's presenting complaint. Further qualitative research exploring patient perspective is required in order to explore the decision-making process that leads patients with palliative care needs to the ED.

The Worldwide Hospice Palliative Care Alliance.

PubMed

Connor, Stephen R; Gwyther, Elizabeth

2018-02-01

The Worldwide Hospice Palliative Care Alliance (WHPCA) is an international non-governmental organization registered as a charity in England and Wales that was established in 2008 following a series of international gatherings that highlighted the important need for palliative care to be included in global policy and health planning. The vision of the WHPCA is a world with universal access to hospice and palliative care. Its mission is to foster, promote and influence the delivery of affordable, quality palliative care. This article describes the evolution of the WHPCA and what it has been able to accomplish in the eight years since its formation. These accomplishments include effective advocacy with United Nations bodies, acceptance as a non-governmental organization in official relations with the World Health Organization and the UN Economic and Social Council, publication of many position papers on critical aspects of palliative care, publication of the Global Atlas of Palliative Care at the End of Life, development of toolkits for palliative care development, publication of the international edition of ehospice, and management of World Hospice and Palliative Care Day each year. Some of the many challenges to the growth and development of palliative care globally are described along with future plans. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The views of homeless people and healthcare professionals on palliative care and the desirability of setting up a consultation service: a focus group study.

PubMed

Klop, Hanna T; van Dongen, Sophie I; Francke, Anneke L; de Veer, Anke J E; Rietjens, Judith A C; Gootjes, Jaap R G; Onwuteaka-Philipsen, Bregje D

2018-06-07

Palliative care for homeless people is often given late, if at all. Professionals in both palliative care and shelter care are often insufficiently equipped to provide this complex care. To provide insights into the palliative care experiences of professionals and homeless people., including barriers and facilitators to care, and to investigate whether a consultative function can help improve palliative care for homeless people. Six focus groups; four with professionals (n=19) and two with severely ill homeless people (n=15). Professionals were sampled purposively in organizations providing (palliative) care to the homeless. Homeless people were recruited by opportunity sampling. Palliative care for homeless people is especially complex and differs substantially from regular palliative care. It differs greatly between professionals, institutions and cities. Homeless people get less autonomy than they would like. Homeless people and professionals have different perceptions of the care provided. Trusting relationships between professionals and homeless people are essential, and easily accessible, and flexible care is needed. Consultation, in particular involving exchange of expertise between professionals, can provide added value to professionals. Homeless people consider consultation primarily as an opportunity to train professionals to show more understanding, provide tailored palliative care and enhance professional collaboration. The local situation, characteristics of a consultant and role of a consultant in providing information and education must be considered when developing the consultation process. Consultation can play an important role in improving palliative care by linking disciplines, providing support to professionals and providing appropriate palliative care to homeless people. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Acceptability and feasibility of an interprofessional end-of-life/palliative care educational intervention in the intensive care unit: A mixed-methods study.

PubMed

Graham, Robyn; Lepage, Carolan; Boitor, Madalina; Petizian, Stephanie; Fillion, Lise; Gélinas, Céline

2018-06-21

This study aimed to describe a seven hour End-of-Life/Palliative Care educational intervention including online content related to symptom management, communication and decision-making capacity and an in-person group integration activity, from the perspective of the interprofessional team in terms of its acceptability and feasibility. A mixed-methods study design was used. The study was conducted in a medical-surgical Intensive Care Unit in Montreal, Canada. The sample consisted of 27 clinicians of the Intensive Care Unit interprofessional team who completed the End-of-Life/Palliative Care educational intervention, and participated in focus groups and completed a self-administered questionnaire. The main outcomes were the acceptability and feasibility of the educational intervention. The intervention was perceived to be appropriate and suitable in providing clinicians with knowledge and skills in symptom management and communication through self-reflection and self-evaluation, provision of assessment tools and promotion of interprofessional teamwork. The online format was more feasible, but the in-person group activity was key for the integration of knowledge and the promotion of interprofessional discussions. Findings suggest that an interprofessional educational intervention integrating on-line content with in-person training has the potential to support clinicians in providing quality End-of-Life/Palliative Care in the Intensive Care Unit. Copyright © 2018. Published by Elsevier Ltd.

Palliative psychiatry for severe persistent mental illness as a new approach to psychiatry? Definition, scope, benefits, and risks.

PubMed

Trachsel, Manuel; Irwin, Scott A; Biller-Andorno, Nikola; Hoff, Paul; Riese, Florian

2016-07-22

As a significant proportion of patients receiving palliative care suffer from states of anxiety, depression, delirium, or other mental symptoms, psychiatry and palliative care already collaborate closely in the palliative care of medical conditions. Despite this well-established involvement of psychiatrists in palliative care, psychiatry does not currently explicitly provide palliative care for patients with mental illness outside the context of terminal medical illness. Based on the WHO definition of palliative care, a, a working definition of palliative psychiatry is proposed. Palliative psychiatry focuses on mental health rather than medical/physical issues. We propose that the beneficiaries of palliative psychiatry are patients with severe persistent mental illness, who are at risk of therapeutic neglect and/or overly aggressive care within current paradigms. These include long-term residential care patients with severe chronic schizophrenia and insufficient quality of life, those with therapy-refractory depressions and repeated suicide attempts, and those with severe long-standing therapy-refractory anorexia nervosa. An explicitly palliative approach within psychiatry has the potential to improve quality of care, person-centredness, outcomes, and autonomy for patients with severe persistent mental illness. The first step towards a palliative psychiatry is to acknowledge those palliative approaches that already exist implicitly in psychiatry. Basic skills for a palliative psychiatry include communication of diagnosis and prognosis, symptom assessment and management, support for advance (mental health) care planning, assessment of caregiver needs, and referral to specialized services. Some of these may already be considered core skills of psychiatrists, but for a truly palliative approach they should be exercised guided by an awareness of the limited functional prognosis and lifespan of patients with severe persistent mental illness.

Structural Challenges of Providing Palliative Care for Patients with Breast Cancer

PubMed Central

Khoshnazar, Tahereh Alsadat Khoubbin; Rassouli, Maryam; Akbari, Mohammad Esmaeil; Lotfi-Kashani, Farah; Momenzadeh, Syrus; Haghighat, Shahpar; Sajjadi, Moosa

2016-01-01

Introduction: To establish a palliative care system (PCS) in Iran, it is necessary to identify the potential barriers. Aim: This study aims to highlight the views of stakeholders to know the challenges of providing palliative care for women with breast cancer. Materials and Methods: Semi-structured in-depth interviews are used with purposeful sampling conducted in Tehran, Iran; from January to June 2015. Twenty participants were included in the study: nine patients with breast cancer and ten health-care providers. The interviews were analyzed using qualitative directed content analysis based on Donabedian model. Data credibility was examined using the criteria of Lincoln and Guba. Results: Based on the pattern of Avedis Donabedian model, two main categories were identified: (1) palliative care services in the health system still remain undefined and (2) lack of adequate care providers. The subcategories emerged from the main categories are: (1) Inexistent home care, (2) specialized palliative care being in high demand, lack of: (a) Rehabilitation program and guidelines, (b) treatment/training protocols, (c) inefficient insurance and out-of-pocket costs, (d) patient referral system, (e) nontransparency of job description, and (f) weakness of teamwork. Discussion: The findings of the study identify views and perceptions of patients as well as the health professionals around the challenges of providing palliative care. To establish a structured PCS, we need to meet the challenges and remove perceived barriers to, including but not limited to, building up knowledge and awareness of health professionals, educating professional, and developing updated, well-defined, and standard treatment protocols, tailored to local conditions. PMID:27803569

Implementing Routine Palliative Care Consultation Before LVAD Implantation: A Single Center Experience.

PubMed

Salomon, Say; Frankel, Hilary; Chuang, Elizabeth; Eti, Serife; Selwyn, Peter

2018-05-01

Left ventricular assist devices (LVADs) are increasingly used to improve quality of life for end-stage heart failure patients. The Joint Commission now requires preimplantation palliative care assessment; however, many palliative care teams have little experience providing this service. To describe the integration of palliative services at one Center of Excellence for Heart and Vascular Care. This is a retrospective chart review of all patients receiving LVADs at a single urban academic medical center from January 2015 to September 2016. Palliative care needs and services provided are described. Two case presentations illustrate the collaboration between the cardiothoracic and palliative care teams. Fifty one patients were included. Of those, 28 received a palliative care consultation during this roll-out period. The rate of consultation rose from 35% to 71% as workflows improved with institutional commitment. Symptom assessment, psychosocial assessment, and advance care planning (ACP) were always performed (n = 28; 100%). More than half of the patients were evaluated for dyspnea (n = 20; 71%), fatigue (n = 18; 64%), and pain (n = 16; 57%). Consults centered around ACP, and very few patients (n = 7; 25%) required palliative care follow-up. Palliative consultation did not delay LVAD placement. Although palliative care consultants provided initial evaluation and management of multiple symptoms, there was not a large ongoing need. Integration of palliative services into the care of patients receiving LVADs can be incorporated into the workflow of the cardiothoracic and palliative care teams, resulting in improved ACP for all patients receiving LVADs and better care coordination for patients at the end of life. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Euthanasia and physician-assisted suicide: A white paper from the European Association for Palliative Care.

PubMed

Radbruch, Lukas; Leget, Carlo; Bahr, Patrick; Müller-Busch, Christof; Ellershaw, John; de Conno, Franco; Vanden Berghe, Paul

2016-02-01

In recognition of the ongoing discussion on euthanasia and physician-assisted suicide, the Board of Directors of the European Association for Palliative Care commissioned this white paper from the palliative care perspective. This white paper aims to provide an ethical framework for palliative care professionals on euthanasia and physician-assisted suicide. It also aims to provide an overview on the available evidence as well as a discourse of ethical principles related to these issues. Starting from a 2003 European Association for Palliative Care position paper, 21 statements were drafted and submitted to a five-round Delphi process A panel with 17 experts commented on the paper in round 1. Board members of national palliative care or hospice associations that are collective members of European Association for Palliative Care were invited to an online survey in rounds 2 and 3. The expert panel and the European Association for Palliative Care board members participated in rounds 4 and 5. This final version was adopted as an official position paper of the European Association for Palliative Care in April 2015. Main topics of the white paper are concepts and definitions of palliative care, its values and philosophy, euthanasia and physician-assisted suicide, key issues on the patient and the organizational level. The consensus process confirmed the 2003 European Association for Palliative Care white paper and its position on the relationship between palliative care and euthanasia and physician-assisted suicide. The European Association for Palliative Care feels that it is important to contribute to informed public debates on these issues. Complete consensus seems to be unachievable due to incompatible normative frameworks that clash. © The Author(s) 2015.

What is Pediatric Palliative Care?

MedlinePlus

... FAQ Handout for Patients and Families What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is ... life for both the child and the family. Pediatric palliative care is provided by a team of ...

The International Association for Hospice and Palliative Care: Advancing Hospice and Palliative Care Worldwide.

PubMed

De Lima, Liliana; Radbruch, Lukas

2018-02-01

The International Association for Hospice and Palliative Care (IAHPC) is a membership-based organization dedicated to the development and improvement of hospice and palliative care worldwide. The mission of IAHPC is to improve the quality of life of adults and children with life-threatening conditions and their families. The vision of IAHPC is universal access to high-quality palliative care, integrated into all levels of health care systems in a continuum of care with disease prevention, early diagnosis, and treatment, to assure that any patient's or family caregiver's suffering is relieved to the greatest extent possible. IAHPC focuses on the advancement of four areas of palliative care: education, access to medicines, health policies, and service implementation. IAHPC works on three levels: at the grass roots, developing resources, and educational strategies that enable health workers to provide cost-effective palliative care; at the national level, working with government representatives to improve national policies to ensure adequate care and access to medicines; and at the international level, advocating with the UN organizations to ensure that access to palliative care and to essential medicines for palliative care and pain treatment is stipulated and incorporated as an obligation of member states. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Implementation of knowledge-based palliative care in nursing homes and pre-post post evaluation by cross-over design: a study protocol.

PubMed

Ahlström, Gerd; Nilsen, Per; Benzein, Eva; Behm, Lina; Wallerstedt, Birgitta; Persson, Magnus; Sandgren, Anna

2018-03-22

The demography of the world is changing as the population is ageing. Because of this change to a higher proportion of older people, the WHO has called for improved palliative care for older persons. A large number of all deaths in the industrialised world occur while older people are living in nursing homes and therefore a key question becomes how the principles of palliative care can be implemented in that context. The aims of this study are: a) to describe a model of an educational intervention with the goal of implementing knowledge-based palliative care in nursing homes, and b) to describe the design of the evaluation of the effectiveness regarding the implementation of knowledge-based palliative care. A complex intervention is evaluated by means of a cross-over design. An educational intervention concerning palliative care consisting of five seminars during 6 months for staff and managers has been developed and conducted in 20 nursing homes in two counties. Before the intervention started, the feasibility was tested in a pilot study conducted in nursing homes not included in the main study. The intervention is evaluated through a non-randomized experimental design with intervention and control groups and pre- and post-assessments. The evaluation includes older persons living in nursing homes, next-of-kin, staff and managers. Data collection consists of quantitative methods such as questionnaires and register data and qualitative methods in the form of individual interviews, focus-group interviews and participant observations. The research will contribute to new knowledge about how to implement knowledge-based palliative care in a nursing home setting. A strength of this project is that the Medical Research Council framework of complex intervention is applied. The four recommended stages, Development, Feasibility and piloting, Evaluation and Implementation, are combined for the educational intervention, which functions as a strategy to achieve knowledge-based palliative care in the nursing homes. Implementation is always a question of change and a good theoretical understanding is needed for drawing valid conclusions about the causal mechanisms of change. The topic is highly relevant considering the world's ageing population. The data collection is completed and the analysis is ongoing. NCT02708498 .

Practices in Human Dignity in Palliative Care: A Qualitative Study.

PubMed

Akin Korhan, Esra; Üstün, Çağatay; Uzelli Yilmaz, Derya

Respecting and valuing an individual's existential dignity forms the basis of nursing and medical practice and of nursing care. The objective of the study was to determine the approach to human dignity that nurses and physicians have while providing palliative care. This qualitative study was performed using a phenomenological research design. In-depth semistructured interviews were conducted in 9 nurses and 5 physicians with human dignity approach in palliative care. Following the qualitative Colaizzi method of analyzing the data, the statements made by the nurses and physicians during the interviews were grouped under 8 categories. Consistent with the questionnaire format, 8 themes and 43 subthemes of responses were determined describing the human dignity of the nurse and the physicians. The results of the study showed that in some of the decisions and practices of the nurses giving nursing care and physicians giving medical care to palliative care patients, while they displayed ethically sensitive behavior, on some points, they showed approaches that violated human dignity and showed lack of awareness of ethical, medical, and social responsibilities.

Singing and Vocal Interventions in Palliative and Cancer Care: Music Therapists' Perceptions of Usage.

PubMed

Clements-Cortés, Amy

2017-11-01

Music therapists in palliative and cancer care settings often use singing and vocal interventions. Although benefits for these interventions are emerging, more information is needed on what type of singing interventions are being used by credentialed music therapists, and what goal areas are being addressed. To assess music therapists' perceptions on how they use singing and vocal interventions in palliative and cancer care environments. Eighty credentialed music therapists from Canada and the United States participated in this two-part convergent mixed-methods study that began with an online survey, followed by individual interviews with 50% (n = 40) of the survey participants. In both palliative and cancer care, singing client-preferred music and singing for relaxation were the most frequently used interventions. In palliative care, the most commonly addressed goals were to increase self-expression, improve mood, and create a feeling of togetherness between individuals receiving palliative care and their family. In cancer care, the most commonly addressed goals were to support breathing, improve mood, and support reminiscence. Seven themes emerged from therapist interviews: containing the space, connection, soothing, identity, freeing the voice within, letting go, and honoring. Music therapists use singing to address the physical, emotional, social, and spiritual goals of patients, and described singing interventions as accessible and effective. Further research is recommended to examine intervention efficacy and identify factors responsible that contribute to clinical benefit. © the American Music Therapy Association 2017. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com

Integrating palliative care into national health systems in Africa: a multi–country intervention study

PubMed Central

Grant, Liz; Downing, Julia; Luyirika, Emmanuel; Murphy, Mairead; Namukwaya, Liz; Kiyange, Fatia; Atieno, Mackuline; Kemigisha–Ssali, Emilly; Hunt, Jenny; Snell, Kaly; Murray, Scott A; Leng, Mhoira

2017-01-01

Background The WHO is calling for the integration of palliative care in all health care settings globally. Methods A 3.5–year program was implemented in 12 government hospitals, three each in Kenya, Rwanda, Uganda and Zambia. A four–pillared approach of advocacy, staff training, service delivery strengthening and international and regional partnership working was utilized. A baseline assessment was undertaken to ascertain needs, and 27 indicators were agreed to guide and evaluate the intervention. Data were also collected through surveys, interviews and focus groups. Results Palliative care was integrated into all 12 hospital settings to various degrees through concurrent interventions of these four approaches. Overall, 218 advocacy activities were undertaken and 4153 community members attended awareness training. 781 staff were equipped with the skills and resources to cascade palliative care through their hospitals and into the community. Patients identified for palliative care increased by a factor of 2.7. All 12 hospitals had oral morphine available and consumption increased by a factor of 2.4 over two years. Twenty–two UK mentors contributed 750 volunteer days to support colleagues in each hospital transfer knowledge and skills. Conclusions Integration of palliative care within different government health services in Africa can be achieved through agreed interventions being delivered concurrently. These include advocacy at Ministry, Provincial and District level, intensive and wide–ranging training, clinical and support services supported by resources, including essential medicines, and an investment in partnerships between hospital, district and community. PMID:28685037

[Organization of palliative medicine in the clinic and ambulatory care].

PubMed

Jonen-Thielemann, I

1998-01-01

To describe the idea of palliative medicine and its forms of organization in the inpatient and outpatient sectors, and in particular to describe the projects for palliative medicine at the University of Cologne, specifying costs and the 1996 statistics of the palliative care unit. Palliative medicine comprises the alleviative treatment, nursing and accompaniment of the incurably ill in the far advanced stage of disease, including the physical, mental, psychic, spiritual and social domains. The underlying concept is "to live until you die" and dying in dignity at the natural end of life. Facilities for palliative medicine in the hospital: palliative care unit, palliative care sector, palliative care consultation service; forms of organization in the outpatient sector: home care service, domiciliary palliative care service and outpatient hospice; independent facilities: hospices-inpatient and part-inpatient. Costs of palliative treatment in the projects of the University of Cologne: palliative care unit: 457.33 DM for one patient per day, 12,092.20 DM average costs per patient admission in 1996 (n = 186); home care service: 200.00 DM flat rate per patient per day; inpatient hospice in Cologne-Heimersdorf: 300.00 DM for one patient per day (home care service and hospice entail additional costs for medical treatment, medication and nursing accessories). Palliative medicine is expensive; only a few patients have the benefit of this; relatives may suppose to be relieved of the burden of their responsibilities; however: the severely ill and dying patients of the hospital experience the best possible care at home or in a "family atmosphere"; gain in experience of palliative medicine and multiplier function, research; awaking our society to thoughts of their own hour of death and what comes after it.

Palliative Care Disincentives in CKD: Changing Policy to Improve CKD Care.

PubMed

Tamura, Manjula Kurella; O'Hare, Ann M; Lin, Eugene; Holdsworth, Laura M; Malcolm, Elizabeth; Moss, Alvin H

2018-06-01

The dominant health delivery model for advanced chronic kidney disease (CKD) and end-stage renal disease (ESRD) in the United States, which focuses on provision of dialysis, is ill-equipped to address many of the needs of seriously ill patients. Although palliative care may address some of these gaps in care, its integration into advanced CKD care has been suboptimal due to several health system barriers. These barriers include uneven access to specialty palliative care services, underdeveloped models of care for seriously ill patients with advanced CKD, and misaligned policy incentives. This article reviews policies that affect the delivery of palliative care for this population, discusses reforms that could address disincentives to palliative care, identifies quality measurement issues for palliative care for individuals with advanced CKD and ESRD, and considers potential pitfalls in the implementation of new models of integrated palliative care. Reforming health care delivery in ways that remove policy disincentives to palliative care for patients with advanced CKD and ESRD will fill a critical gap in care. Copyright © 2018 National Kidney Foundation, Inc. Published by Elsevier Inc. All rights reserved.

Pediatric Cardiology Provider Attitudes About Palliative Care: A Multicenter Survey Study.

PubMed

Balkin, Emily Morell; Kirkpatrick, James N; Kaufman, Beth; Swetz, Keith M; Sleeper, Lynn A; Wolfe, Joanne; Blume, Elizabeth D

2017-10-01

While availability of palliative care consultation for children with advanced heart disease increases, little is known about cardiologist attitudes towards palliative care. We sought to describe perspectives of cardiologists regarding palliative care and to characterize their perceived competence in palliative care concepts. A cross-sectional survey of pediatric cardiologists and cardiac surgeons from 19 pediatric medical centers was performed. Overall response rate was 31% (183/589). Respondents had a median of 18 years of experience since medical school (range 2-49) and most practiced at academic centers (91%). Sixty-percent of respondents felt that palliative care consultations occur "too late" and the majority (85%) agreed that palliative care consultations are helpful. Barriers to requesting palliative care consultation were most frequently described as "referring to palliative care services too early will undermine parents' hope" (45%) and "concern that parents will think I am giving up on their child" (56%). Only 33% of cardiologists reported feeling "very" or "moderately" competent in prognosticating life expectancy while over 60% felt competent caring for children with heart disease around end of life, and nearly 80% felt competent discussing goals of care and code status. Greater perceived competence was associated with subspecialty (heart failure/intensivist vs. other) (OR 3.6, 95% CI 1.6-8.1, p = 0.003) and didactic training (OR 6.27, 95% CI 1.8-21.8, p = 0.004). These results underscore the need for further training in palliative care skills for pediatric cardiologists. Enhancing palliative care skills among cardiologists and facilitating partnership with subspecialty palliative care teams may improve overall care of children with advanced heart disease.

Does it matter what you call it? A randomized trial of language used to describe palliative care services.

PubMed

Maciasz, R M; Arnold, R M; Chu, E; Park, S Y; White, D B; Vater, L B; Schenker, Y

2013-12-01

Integration of palliative care into oncology practice remains suboptimal. Misperceptions about the meaning of palliative care may negatively impact utilization. We assessed whether the term and/or description of palliative care services affected patient views. 2x2 between-subject randomized factorial telephone survey of 169 patients with advanced cancer. Patients were randomized into one of four groups that differed by name (supportive care vs. palliative care) and description (patient-centered vs. traditional). Main outcomes (0-10 Likert scale) were patient understanding, impressions, perceived need, and intended use of services. When compared to palliative care, the term supportive care was associated with better understanding (7.7 vs. 6.8; p = 0.021), more favorable impressions (8.4 vs. 7.3; p = 0.002), and higher future perceived need (8.6 vs. 7.7; p = 0.017). There was no difference in outcomes between traditional and patient-centered descriptions. In adjusted linear regression models, the term supportive care remained associated with more favorable impressions (p = 0.003) and higher future perceived need (p = 0.022) when compared to palliative care. Patients with advanced cancer view the name supportive care more favorably than palliative care. Future efforts to integrate principles of palliative medicine into oncology may require changing impressions of palliative care or substituting the term supportive care.

OA27 Rural palliative care for low resource settings among marginalised communities in the south indian state of tamilnadu - a new venture with two and a half years of outcome.

PubMed

Thiagarajan, Mohanasundaram

2015-04-01

India with a total of 1.27 Billion (2014) population and over 73% of them are living in rural areas. Cancer remaining as the second cause of death in rural community and at any given time over 4 million cancer cases are living in our country and most of them are diagnosed at their advanced stages and suffering with intractable pain and 'total sufferings'. At present, time available for palliative care services is less than 1% for the needy, it is mostly spread out around the urban areas leaving the remaining 73% of rural sufferers in lack of availability, accessibility, acceptability and affordability. To identify the need for palliative care, in a particular Block of the district, and provide home based total care. Selection of 'Andanallur' village block with a population of nearly 100,000. Sensitisation of the health care staff, village members, self help groups and schools and through the Information, educative and communication methods. Conduction of a primary survey to identify the needy Examination and short listing cases for home based Palliative care Home based palliative care The project was started in 2011 January and 156 cases short listed; 121 cases started with home care and 52 cases had passed away, 8 cases were given end of life care. Palliative care reaching the sufferers directly Reaching the unreachable and under-privileged Need based 'total care' at their door steps Empowering and training the family members. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Preference for Palliative Care in Cancer Patients: Are Men and Women Alike?

PubMed

Saeed, Fahad; Hoerger, Michael; Norton, Sally A; Guancial, Elizabeth; Epstein, Ronald M; Duberstein, Paul R

2018-03-23

Men and those with low educational attainment are less likely to receive palliative care. Understanding these disparities is a high priority issue. In this study of advanced cancer patients, we hypothesized that men and those with lower levels of educational attainment would have less favorable attitudes toward palliative care. We performed a cross-sectional analysis of data collected from 383 patients at study entry in the Values and Options in Cancer Care (VOICE) clinical trial. Patients were asked about their preferences for palliative care if their oncologist informed them that further treatment would not be helpful. Palliative care was defined as "comfort care" that focuses on "quality of life, but not a cure." Response options were definitely no, possibly no, unsure, possibly yes, and definitely yes. Those preferring palliative care (definitely or possibly yes) were compared to all others. Predictors were patient gender and education level. Covariates included age, race, disease aggressiveness, and financial strain. Women were more likely [odds ratio (95% CI)] than men to prefer palliative care [3.07 (1.80-5.23)]. The effect of education on preferences for palliative care was not statistically significant [0.85 (0.48-1.48)]. Significant gender differences in patients' preferences for palliative care could partially account for gender disparities in end-of-life care. Interventions to promote palliative care among men could reduce these disparities. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography.

PubMed

Williams-Reade, Jackie; Lamson, Angela L; Knight, Sharon M; White, Mark B; Ballard, Sharon M; Desai, Priti P

2015-04-01

Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center. In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families. Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support. The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.

Palliative care knowledge, attitudes and perceived self-competence of nurses working in Vietnam.

PubMed

Nguyen, Ly Thuy; Yates, Patsy; Osborne, Yvonne

2014-09-01

To explore palliative care knowledge, attitudes and perceived self-competence of nurses working in oncology settings in Hanoi, Vietnam. The study employed a cross-sectional descriptive survey design. The self-administered questionnaires consisted of three validated instruments: the Expertise and Insight Test for Palliative Care, the Attitude Toward Care of the Dying Scale B and the Palliative Care Nursing Self Competence Scale. The sample consisted of 251 nurses caring for cancer patients in three oncology hospitals in Vietnam. The responses identified low scores in nurses' palliative care knowledge related to pain and other symptom management and psychological and spiritual aspects. Nurses' responses reflected discomfort in communicating about death and establishing therapeutic relationship with oncology patients who require palliative care. Additionally, nurses reported low scores in perceived self-competence when providing pain management and addressing social and spiritual domains of palliative care. The findings also revealed that nurses who had higher palliative care knowledge scores demonstrated attitudes which were more positive and expressed greater perceived self-competence. Nurses working in oncology wards need more education to develop their knowledge and skills of palliative care, especially in the areas of pain management, psychological and spiritual care, and communication.

Enhancing palliative care delivery in a regional community in Australia.

PubMed

Phillips, Jane L; Davidson, Patricia M; Jackson, Debra; Kristjanson, Linda; Bennett, Margaret L; Daly, John

2006-08-01

Although access to palliative care is a fundamental right for people in Australia and is endorsed by government policy, there is often limited access to specialist palliative care services in regional, rural and remote areas. This article appraises the evidence pertaining to palliative care service delivery to inform a sustainable model of palliative care that meets the needs of a regional population on the mid-north coast of New South Wales. Expert consultation and an eclectic literature review were undertaken to develop a model of palliative care service delivery appropriate to the needs of the target population and resources of the local community. On the basis of this review, a local palliative care system that is based on a population-based approach to service planning and delivery, with formalized integrated network agreements and role delineation between specialist and generalist providers, has the greatest potential to meet the palliative care needs of this regional coastal community.

A modified systematic review of research evidence about education for pre-registration nurses in palliative care.

PubMed

Bassah, Nahyeni; Seymour, Jane; Cox, Karen

2014-01-01

We undertook a modified systematic review of research regarding educational approaches to and effectiveness of pre-registration palliative care nursing, to inform the development of a short course in palliative care for pre-registration nursing students in Cameroon. The aim of this review was to examine educational approaches applied to pre-registration palliative care nursing education and their effectiveness, and to discuss implications for the development of palliative care curricula in resource-poor countries. A modified systematic review of research on palliative care educational interventions, conducted with pre-registration student nurses was undertaken. Relevant literature was gathered from CINAHL, EMBASE, MEDLINE and PsychINFO databases for the period 2000-2013. Inclusion was limited to studies of educational interventions evaluating the effectiveness and outcomes of palliative and end of life care education with pre-registration student nurses. 17 studies were found, all of which were conducted in resource-rich countries: United States of America, Canada, Australia, and United Kingdom. Palliative care nursing education at pre-registration level is either delivered as a discrete course within the curriculum or palliative care content is embedded into other nursing specialty courses throughout the wider curriculum. Palliative care education is delivered to students at a variety of stages in their nursing program, using a mix of both didactic and experiential educational strategies. Course facilitators span palliative care specialists, educators who have attended 'train-the-trainer' courses in palliative care, and nurses with hospice experience. Education is underpinned by transformative and experiential learning theories and reported as effective in improving students' attitudes towards care of the dying. The educational strategies identified in this review may be applicable to resource-poor countries. However, there are challenges in transferability because of the lack of availability of specialist palliative care practitioners who can serve as educators, specialist palliative care units/institutions for experiential learning, funds to design and use high fidelity simulations, and palliative care textbooks and other educational materials. There is thus a need for innovative educational strategies that can bridge these barriers in resource-poor countries. There is also a need for further research into how palliative care education impacts on pre-registration student nurses' knowledge and practice.

Early Palliative Care-Health services research and implementation of sustainable changes: the study protocol of the EVI project.

PubMed

Meffert, Cornelia; Gaertner, Jan; Seibel, Katharina; Jors, Karin; Bardenheuer, Hubert; Buchheidt, Dieter; Mayer-Steinacker, Regine; Viehrig, Marén; Paul, Christina; Stock, Stephanie; Xander, Carola; Becker, Gerhild

2015-05-29

International medical organizations such as the American Society of Medical Oncology recommend early palliative care as the "gold standard" for palliative care in patients with advanced cancer. Nevertheless, even in Comprehensive Cancer Centers, early palliative care is not yet routine practice. The main goal of the EVI project is to evaluate whether early palliative care can be implemented-in the sense of "putting evidence into practice"-into the everyday clinical practice of Comprehensive Cancer Centers. In addition, we are interested in (1) describing the type of support that patients would like from palliative care, (2) gaining information about the effect of palliative care on patients' quality of life, and (3) understanding the economic burden of palliative care on patients and their families. The EVI project is a multi-center, prospective cohort study with a sequential control group design. The study is a project of the Palliative Care Center of Excellence (KOMPACT) in Baden-Württemberg, Germany, which was recently established to combine the expertise of five academic, specialist palliative care departments. The study is divided into two phases: preliminary phase (months 1-9) and main study phase (months 10-18). In each of all five participating academic Comprehensive Cancer Centers, an experienced palliative care physician will be hired for 18 months. During the preliminary phase, the physician will be allowed time to establish the necessary structures for early palliative care within the Comprehensive Cancer Center. In the main study phase, patients with metastatic cancer will be offered a consultation with the palliative care physician within eight weeks of diagnosis. After the initial consultation, follow-up consultations will be offered as needed. The study is built upon a convergent parallel design. In the quantitative arm, patients will be surveyed in both the preliminary and main study phase at three points in time (baseline, 12 weeks, 24 weeks). Standardized questionnaires will be used to measure patients' quality of life, symptom burden and mood. Using interviews with palliative care physicians, oncologists, department heads, patients and their caregivers, the qualitative arm will explore (1) what factors encourage and hinder the early integration of palliative care into standard oncology care, (2) what support patients and their caregivers would like from palliative care, and (3) what effect palliative care has on the economic disease burden of patients and their families. The study proposed is meant to serve as a catalyzer. Local palliative care teams should be put in position to routinely cooperate with the primary treating department at their respective cancer center. The long-term goal of this project is to create sustainable improvements in the care of patients with incurable cancer. DRKS00006162 ; date of registration: 19/05/2014.

Communication as a core skill of palliative surgical care.

PubMed

Miner, Thomas J

2012-03-01

Excellence as a surgeon requires not only the technical and intellectual ability to effectively take care of surgical disease but also an ability to respond to the needs and questions of patients. This article provides an overview of the importance of communication skills in optimal surgical palliation and offers suggestions for a multidisciplinary team approach, using the palliative triangle as the ideal model of communication and interpersonal skills. This article also discusses guidelines for advanced surgical decision making and outlines methods to improve communication skills. Copyright © 2012 Elsevier Inc. All rights reserved.

Two steps forward, one step back: changes in palliative care consultation services in California hospitals from 2007 to 2011.

PubMed

Pantilat, Steven Z; O'Riordan, David L; Bruno, Kelly A

2014-11-01

The number of palliative care consultation services is growing, yet little is known about how program characteristics change over time. Compare changes in the characteristics of palliative care programs and palliative care consultation services in 2007 and 2011. We surveyed all hospitals in California in 2011 and compared palliative care program and palliative care consultation service characteristics with survey results from 2007. There were 41 new palliative care programs since 2007; 17 programs closed between 2007 and 2011. Hospital characteristics associated with the closure of a palliative care program included a hospital size of 1-149 beds versus 150 or more (p=0.03), for-profit status (p=0.001), and having no system affiliation (p=0.0001). The prevalence of palliative care consultation services was 33% in 2007 and 37% in 2011 (p=0.3). At both time periods nearly all palliative care consultation services (98%) were available onsite during weekday business hours and only half were available at other times (p=0.4). There was an increase (p=0.002) in nurse/physician full-time equivalent (FTE; 2007, mean=1.5; 95% confidence interval [CI]=1.3-1.7; 2011, mean=1.9; 95% CI=1.6-2.2) but fewer teams reported having social workers (58% versus 80%, p=0.002) and chaplains (58% versus 77%, p=0.0001) in 2011. Over half of the palliative care consultation services reported seeing less than 50% of patients who would benefit from a consultation (2007: 59%, 2011=50%, p=0.2), yet most also reported struggling to cope with patient volume (2007: 62%; 2011: 66%, p=0.5). Fewer than half of hospitals in California offer a palliative care program and many close over time. Making palliative care consultation services a condition of participation by insurers could make hospital palliative care consultation services universal. Mechanisms need to be established to improve staffing levels, maintain the interdisciplinary nature of palliative care consultation services, and accommodate demand for services.

Using a supportive care framework to understand and improve palliative care among cancer patients in Africa.

PubMed

Busolo, David S; Woodgate, Roberta L

2016-06-01

Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement. The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework. Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care. Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.

Assessing Emotional Suffering in Palliative Care: Use of a Structured Note Template to Improve Documentation.

PubMed

Lamba, Sangeeta; Berlin, Ana; Goett, Rebecca; Ponce, Christopher B; Holland, Bart; Walther, Susanne

2016-07-01

Documentation of the emotional or psychological needs of seriously ill patients receiving specialty palliative care is endorsed by the "Measuring What Matters" project as a quality performance metric and recommended for use by hospice and palliative care programs for program improvement. The aim of this study was to increase the proportion of inpatient palliative care team encounters in which emotional or psychological needs of patients and family members were documented and to qualitatively enrich the nature of this documentation. This is a mixed-methods retrospective study of 200 patient charts reviewed before and after implementation of a structured note template (SmartPhrase) for palliative care encounters. Patterns of documentation of emotional needs pre- and post-implementation were assessed quantitatively and qualitatively using thematic analysis. A total of 158 of 200 pre-intervention charts and 185 of 200 post-intervention charts included at least one note from the palliative care team. Documentation of emotional assessment increased after SmartPhrase implementation (63.9% [101 of 158] vs. 74.6% [138 of 185]; P < 0.03). Qualitative analysis revealed a post-intervention reduction in the use of generic phrases ("emotional support provided") and an increase in the breadth and depth of emotion-related documentation. A structured note template with a prompt for emotional assessment increases the overall quantity and richness of documentation related to patient and family emotions. However, this documentation remains mostly descriptive. Additional prompting for documentation of recommendations to address identified emotional needs, and the use of screening tools for depression and anxiety, when appropriate, may be necessary for clinically meaningful quality improvements in patient care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe, using Delphi methods: A White Paper from the European Association of Palliative Care

PubMed Central

Tuffrey-Wijne, Irene; McLaughlin, Dorry; Curfs, Leopold; Dusart, Anne; Hoenger, Catherine; McEnhill, Linda; Read, Sue; Ryan, Karen; Satgé, Daniel; Straßer, Benjamin; Westergård, Britt-Evy; Oliver, David

2015-01-01

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their palliative care needs. Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe. Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for Palliative Care reviewed and approved the final version. Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks. Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice. PMID:26346181

Prescription Pattern of Analgesic Drugs for Patients Receiving Palliative Care in a Teaching Hospital in India

PubMed Central

Menezes, Vishma Hydie; Nair, Shoba N; Soumya, MS; Tarey, SD

2016-01-01

Background: Drugs used in the palliative care unit for managing symptoms are major contributors toward the expenditure occurring in palliative care. This study was conducted to understand the prescription pattern of analgesic drugs in the patients who are receiving palliative care in a teaching hospital in India by a retrospective study of case records. Methods: Case record based, retrospective, descriptive study was conducted at the Pain and Palliative Care Department of St. John's Medical College Hospital, Bengaluru. Case record files of all patients referred to Pain and Palliative Care Department for the treatment of pain in the year of 2012 were studied. Patients’ age, gender, diagnoses, numerical pain rating scale (0–10), drugs prescribed, dosage, frequency, route of administration were recorded. The difference in drug utilization between the genders was done using Chi-square test. Data were collected from 502 patients of which 280 (56%) were males and 222 (44%) were females. Twelve percent of patients had mild pain (1–3), 34% had moderate pain (4–6), and 54% had severe pain (7–10). The most commonly used analgesic drugs were opioids (47%), followed by nonsteroidal anti-inflammatory drugs (36%). The opioids used were tramadol (56%), and morphine (38%). Ninety percent of patients with numerical pain scale more than 6 received morphine. There was no difference in analgesic drug utilization with regards to gender. Prescription pattern differed depending on the severity of pain. Opioids were the most commonly used drugs for pain management. Conclusion: The study shows that prescription pattern in palliative care unit of this hospital was in accordance with WHO pain management guidelines. The study showed the current trend in prescription of analgesic drugs in the teaching hospital where the study was conducted. PMID:26962282

When and Why Do Neonatal and Pediatric Critical Care Physicians Consult Palliative Care?

PubMed

Richards, Claire A; Starks, Helene; O'Connor, M Rebecca; Bourget, Erica; Lindhorst, Taryn; Hays, Ross; Doorenbos, Ardith Z

2018-06-01

Parents of children admitted to neonatal and pediatric intensive care units (ICUs) are at increased risk of experiencing acute and post-traumatic stress disorder. The integration of palliative care may improve child and family outcomes, yet there remains a lack of information about indicators for specialty-level palliative care involvement in this setting. To describe neonatal and pediatric critical care physician perspectives on indicators for when and why to involve palliative care consultants. Semistructured interviews were conducted with 22 attending physicians from neonatal, pediatric, and cardiothoracic ICUs in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analyses. We identified 2 themes related to the indicators for involving palliative care consultants: (1) palliative care expertise including support and bridging communication and (2) organizational factors influencing communication including competing priorities and fragmentation of care. Palliative care was most beneficial for families at risk of experiencing communication problems that resulted from organizational factors, including those with long lengths of stay and medical complexity. The ability of palliative care consultants to bridge communication was limited by some of these same organizational factors. Physicians valued the involvement of palliative care consultants when they improved efficiency and promoted harmony. Given the increasing number of children with complex chronic conditions, it is important to support the capacity of ICU clinical teams to provide primary palliative care. We suggest comprehensive system changes and critical care physician training to include topics related to chronic illness and disability.

Estimation of Need for Palliative Care among Noncancer Patients Attending a Tertiary Care Hospital.

PubMed

Prasad, Parvathy; Sarkar, Sonali; Dubashi, Biswajit; Adinarayanan, S

2017-01-01

Palliative care services, until recently, were mainly restricted to cancer patients with incurable diseases. Hence, evaluative studies of palliative care are sparse in areas other than oncology. To estimate what proportion of patients attending the Departments of Neurology, Cardiology, and Nephrology of Jawaharlal Institute of Postgraduate Medical Education and Research (JIPMER), Puducherry, required palliative care and to identify the palliative care needs of those patients. This was an exploratory descriptive study conducted in the three departments of JIPMER. There was no predetermined sample size for the study. The participants were all adult inpatients and outpatients who were in need of palliative care in the departments of Cardiology, Nephrology, and Neurology on the day of study. Percentage distribution was used to analyze the categorical variables such as education, gender, age, patients in need of palliative care, and their needs. The study showed that one in ten non-cancer patients in tertiary care hospitals may require palliative care services. Apart from issues in physical domain, a substantial proportion of participants also had issues in the psychological, emotional, and financial domains. This study highlights the need for incorporation and initiation of palliative care services in other non-cancer specialties in tertiary care hospitals to ensure holistic management of such cases. Counseling service has also to be rendered as part of palliative care since a good share of the patients had psychological and emotional issues.

Integrating palliative care into the trajectory of cancer care

PubMed Central

Hui, David; Bruera, Eduardo

2016-01-01

Over the past five decades, palliative care has evolved from serving patients at the end of life into a highly specialized discipline focused on delivering supportive care to patients with life-limiting illnesses throughout the disease trajectory. A growing body of evidence is now available to inform the key domains in the practice of palliative care, including symptom management, psychosocial care, communication, decision-making, and end-of-life care. Findings from multiple studies indicate that integrating palliative care early in the disease trajectory can result in improvements in quality of life, symptom control, patient and caregiver satisfaction, quality of end-of-life care, survival, and costs of care. In this narrative Review, we discuss various strategies to integrate oncology and palliative care by optimizing clinical infrastructures, processes, education, and research. The goal of integration is to maximize patient access to palliative care and, ultimately, to improve patient outcomes. We provide a conceptual model for the integration of supportive and/or palliative care with primary and oncological care. We end by discussing how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available. PMID:26598947

United against cancer: prevention to end-of-life care-highlights from the Uganda Cancer Institute-Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24-25 August 2017, Kampala, Uganda.

PubMed

Downing, Julia; Ddungu, Henry; Kiyange, Fatia; Batuli, Mwazi; Kafeero, James; Kebirungi, Harriet; Kiwanuka, Rose; Mugisha, Noleb; Mwebesa, Eddie; Mwesiga, Mark; Namukwaya, Elizabeth; Niyonzima, Nixon; Phipps, Warren; Orem, Jackson

2017-01-01

The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference on cancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patient care improved across Uganda and the region. The theme - United Against Cancer: Prevention to End-of-Life Care - reflected this joint vision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation and palliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importance of the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National Cancer Control Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rights and access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration; resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learning from each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognised, allowing for further networking between cancer and palliative care organisations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care.

Communication about palliative care: A phenomenological study exploring patient views and responses to its discussion.

PubMed

Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2018-01-01

Communication about palliative care is a complex task frequently delayed until otherwise unavoidable. There is a need for discussion of palliative care to be viewed as a distinct communication task that is guided by empirical data. However, little is known of patient views and responses to these encounters. To explore patient views surrounding communication about palliative care and their responses to its discussion. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Australia. Three major themes evolved. (1) Death as unspeakable: death was expressed using only implicit, ambiguous or technical terms and perceived to be outside the parameters of medical interactions. (2) Palliative care as a euphemism for death: the term 'palliative care' was perceived to be used by health professionals as a tool to talk about dying and understood by patients as a euphemism for death. (3) Palliative care as unspeakable: 'palliative care' was personified by patients to mean not just death, but my death, in turn, also becoming unspeakable. This study provides important new patient insights and responses to the discussion of palliative care. Results demonstrate that the task of discussing palliative care remains complex, difficult and limited by our language. Greater consistency, sensitivity and sophistication are required when talking about palliative care to patients who may benefit from this care.

Barriers to providing palliative care in long-term care facilities

PubMed Central

Brazil, Kevin; Bédard, Michel; Krueger, Paul; Taniguchi, Alan; Kelley, Mary Lou; McAiney, Carrie; Justice, Christopher

2006-01-01

OBJECTIVE To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. DESIGN Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. SETTING All licensed LTC facilities in Ontario with designated medical directors. PARTICIPANTS Medical directors in the facilities. MAIN OUTCOME MEASURES Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. RESULTS Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff’s capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice guidelines related to assessing and managing palliative care patients (67.8%). CONCLUSION Medical directors in our study reported that their LTC facilities were inadequately staffed and lacked equipment. The study also highlighted the specialized role of medical directors, who identified continuing medical education as a key strategy for improving provision of palliative care. PMID:17327890

Barriers to providing palliative care in long-term care facilities.

PubMed

Brazil, Kevin; Bédard, Michel; Krueger, Paul; Taniguchi, Alan; Kelley, Mary Lou; McAiney, Carrie; Justice, Christopher

2006-04-01

To assess challenges in providing palliative care in long-term care (LTC) facilities from the perspective of medical directors. Cross-sectional mailed survey. A questionnaire was developed, reviewed, pilot-tested, and sent to 450 medical directors representing 531 LTC facilities. Responses were rated on 2 different 5-point scales. Descriptive analyses were conducted on all responses. All licensed LTC facilities in Ontario with designated medical directors. Medical directors in the facilities. Demographic and practice characteristics of physicians and facilities, importance of potential barriers to providing palliative care, strategies that could be helpful in providing palliative care, and the kind of training in palliative care respondents had received. Two hundred seventy-five medical directors (61%) representing 302 LTC facilities (57%) responded to the survey. Potential barriers to providing palliative care were clustered into 3 groups: facility staff's capacity to provide palliative care, education and support, and the need for external resources. Two thirds of respondents (67.1%) reported that inadequate staffing in their facilities was an important barrier to providing palliative care. Other barriers included inadequate financial reimbursement from the Ontario Health Insurance Program (58.5%), the heavy time commitment required (47.3%), and the lack of equipment in facilities (42.5%). No statistically significant relationship was found between geographic location or profit status of facilities and barriers to providing palliative care. Strategies respondents would use to improve provision of palliative care included continuing medical education (80.0%), protocols for assessing and monitoring pain (77.7%), finding ways to increase financial reimbursement for managing palliative care residents (72.1%), providing educational material for facility staff (70.7%), and providing practice guidelines related to assessing and managing palliative care patients (67.8%). Medical directors in our study reported that their LTC facilities were inadequately staffed and lacked equipment. The study also highlighted the specialized role of medical directors, who identified continuing medical education as a key strategy for improving provision of palliative care.

Medication management for community palliative care patients and the role of a specialist palliative care pharmacist: A qualitative exploration of consumer and health care professional perspectives.

PubMed

Kuruvilla, Lisha; Weeks, Greg; Eastman, Peter; George, Johnson

2018-05-01

Pharmacists have a key role to play in optimisation of medication regimens and promotion of medication safety. The role of specialist pharmacists as part of the multidisciplinary palliative care team, especially in the primary care setting, is not widely recognised. To explore the perspectives of stakeholders about the gaps in the current model of community palliative care services in relation to medication management and to assess their opinions pertaining to the role of a specialist palliative care pharmacist in addressing some of those gaps. Qualitative study utilising three focus groups involving 20 stakeholders. Thematic analysis was carried out using a framework approach and interpreted in the context of the Chronic Care Model for improving primary care for patients with chronic illness. Setting was a large regional Australian palliative care service. Participants included palliative care consumers and clinicians specifically patients, caregivers, physicians, nurses and pharmacists. Five major themes emerged from the focus groups: access to resources, medicines and information; shared care; challenges of polypharmacy; informal caregiver needs and potential roles of a palliative care pharmacist. Gaps in access to medicines/resources, training for generalist practitioners, communication between treating teams and lack of support for patients and carers were cited as factors adversely impacting medication management in community-based palliative care. While community-based palliative care is an essential aspect of meeting the health care demands of an ageing society, the current model has several gaps and limitations. An appropriately qualified and skilled pharmacist within the palliative care team may help to address some of the gaps in relation to medication access and appropriateness.

Assessing and Responding to Palliative Care Needs in Rural Sub-Saharan Africa: Results from a Model Intervention and Situation Analysis in Malawi

PubMed Central

Kalanga, Noel; Keck, James W.; Wroe, Emily B.; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Beste, Jason A.; Tengatenga, Listern; Bazile, Junior

2014-01-01

Introduction Palliative care is rarely accessible in rural sub-Saharan Africa. Partners In Health and the Malawi government established the Neno Palliative Care Program (NPCP) to provide palliative care in rural Neno district. We conducted a situation analysis to evaluate early NPCP outcomes and better understand palliative care needs, knowledge, and preferences. Methods Employing rapid evaluation methodology, we collected data from 3 sources: 1) chart review of all adult patients from the NPCP’s first 9 months; 2) structured interviews with patients and caregivers; 3) semi-structured interviews with key stakeholders. Results The NPCP enrolled 63 patients in its first 9 months. Frequent diagnoses were cancer (n = 50, 79%) and HIV/AIDS (n = 37 of 61, 61%). Nearly all (n = 31, 84%) patients with HIV/AIDS were on antiretroviral therapy. Providers registered 112 patient encounters, including 22 (20%) home visits. Most (n = 43, 68%) patients had documented pain at baseline, of whom 23 (53%) were treated with morphine. A majority (n = 35, 56%) had ≥1 follow-up encounter. Mean African Palliative Outcome Scale pain score decreased non-significantly between baseline and follow-up (3.0 vs. 2.7, p = 0.5) for patients with baseline pain and complete pain assessment documentation. Providers referred 48 (76%) patients for psychosocial services, including community health worker support, socioeconomic assistance, or both. We interviewed 36 patients referred to the NPCP after the chart review period. Most had cancer (n = 19, 53%) or HIV/AIDS (n = 10, 28%). Patients frequently reported needing income (n = 24, 67%) or food (n = 22, 61%). Stakeholders cited a need to make integrated palliative care widely available. Conclusions We identified a high prevalence of pain and psychosocial needs among patients with serious chronic illnesses in rural Malawi. Early NPCP results suggest that comprehensive palliative care can be provided in rural Africa by integrating disease-modifying treatment and palliative care, linking hospital, clinic, and home-based services, and providing psychosocial support that includes socioeconomic assistance. PMID:25313997

Communication and Quality of Care on Palliative Care Units: A Qualitative Study.

PubMed

Seccareccia, Dori; Wentlandt, Kirsten; Kevork, Nanor; Workentin, Kevin; Blacker, Susan; Gagliese, Lucia; Grossman, Daphna; Zimmermann, Camilla

2015-09-01

Clinician-patient communication is central in palliative care, but it has not been described qualitatively which specific elements of communication are important for high-quality palliative care, particularly in the inpatient setting. Our aim was to identify elements of communication that are central to quality of care and satisfaction with care on palliative care units (PCUs), as described by inpatients, family caregivers, and health care providers. Qualitative interviews with patients/caregivers and focus groups with staff were conducted on four PCUs. Semi-structured interviews and focus groups elicited thoughts about the characteristics of satisfaction with care and quality of care for PCU inpatients and their family caregivers. Data were analyzed using a grounded theory method with an inductive, constant comparison approach; themes were coded to saturation. There were 46 interviews and eight focus groups. Communication was the most prevalent theme regarding satisfaction and quality of care, with five subthemes describing elements important to patients, caregivers, and staff. These included: 1) building rapport with patients and families to build trust and kinship; 2) addressing expectations and explaining goals of care; 3) keeping patients and families informed about the patient's condition; 4) listening actively to validate patients' concerns and individual needs; and 5) providing a safe space for conversations about death and dying. Patients, family caregivers, and health care providers affirmed that communication is a central element of quality of care and family satisfaction on PCUs. The five subthemes identified may serve as a structure for education and for quality improvement tools in palliative care inpatient settings.

The case for home based telehealth in pediatric palliative care: a systematic review

PubMed Central

2013-01-01

Background Over the last decade technology has rapidly changed the ability to provide home telehealth services. At the same time, pediatric palliative care has developed as a small, but distinct speciality. Understanding the experiences of providing home telehealth services in pediatric palliative care is therefore important. Methods A literature review was undertaken to identify and critically appraise published work relevant to the area. Studies were identified by searching the electronic databases Medline, CINAHL and Google Scholar. The reference list of each paper was also inspected to identify any further studies. Results There were 33 studies that met the inclusion criteria of which only six were pediatric focussed. Outcome measures included effects on quality of life and anxiety, substitution of home visits, economic factors, barriers, feasibility, acceptability, satisfaction and readiness for telehealth. While studies generally identified benefits of using home telehealth in palliative care, the utilisation of home telehealth programs was limited by numerous challenges. Conclusion Research in this area is challenging; ethical issues and logistical factors such as recruitment and attrition because of patient death make determining effectiveness of telehealth interventions difficult. Future research in home telehealth for the pediatric palliative care population should focus on the factors that influence acceptance of telehealth applications, including goals of care, access to alternative modes of care, perceived need for care, and comfort with using technology. PMID:23374676

The impact of palliative care training for oncologists and integrative palliative service in a public-funded hospital cluster-a retrospective cohort study.

PubMed

Lam, Pak-Lun; Lam, Tai-Chung; Choi, Cheuk-Wai; Lee, Anne Wing-Mui; Yuen, Kwok-Keung; Leung, To-Wai

2018-05-01

Oncological care of advanced cancer patients was provided by multiple departments in Hong Kong. One of these departments, the clinical oncology department (COD), introduced systematic palliative care training for its oncologists since 2002. The COD was recognized as a European Society for Medical Oncology (ESMO) Designated Centre of Integrated Oncology and Palliative Care since 2009. This retrospective cohort study aims to review the impact of integrative training and service on palliative care coverage and outcome. Clinical information, palliative service provision, and end-of-life outcomes of patients who passed away from lung, colorectal, liver, stomach, or breast cancer in the Hong Kong West public hospital network during July 2015 to December 2015 were collected. A total of 307 patients were analyzed. Around half (49.2%) were attended primarily by COD, and 68.9% received palliative service. There are significantly fewer patients referred to palliative care from other departments (p < 0.001), with only 19.9% of this patient group receiving palliative referral. COD patients had longer palliative coverage before death (median 65 days versus 24 days, p < 0.001), higher chance of receiving end-of-life care at hospice units (36.4 versus 21.2%, p = 0.003), lower ICU admission (0.66 versus 5.1%, p = 0.02), and higher percentage of receiving strong opioid in the last 30 days of life (51.0 versus 28.9%, p < 0.001) compared to other departments. In multivariable analysis, COD being the primary care team (odds ratio 12.2, p < 0.001) was associated with higher palliative care coverage. The study results suggested that systematic palliative care training of oncologists and integrative palliative service model was associated with higher palliative service coverage and improved palliative care outcomes.

Weaving interdisciplinary and discipline-specific content into palliative care education: one successful model for teaching end-of-life care.

PubMed

Supiano, Katherine P

2013-01-01

While palliative care is best delivered in an interdisciplinary format, courses teaching the interdisciplinary approach to palliative care are rare in healthcare education. This article describes a graduate-level course in palliative care for students in nursing, pharmacy, social work, and gerontology taught by faculty from each discipline. The overarching goals of this course are to convey core palliative care knowledge across disciplines, articulate the essential contribution of each discipline in collaborative care, and to define interdisciplinary processes learners need to understand and navigate interdisciplinary palliative care. Learning outcomes included increased knowledge in palliative care, enhanced attitudes in practice and application of skills to clinical practice settings, increased ability to contribute discipline-specific knowledge to their teams' discussions, and a sense of increasing confidence in participating in the care of complex patients, communicating with families, and contributing to the team as a member of their own discipline.

Professional Quality of Life among Professional Care Providers at Cancer Palliative Care Centers in Bengaluru, India

PubMed Central

Kaur, Amanpreet; Sharma, Mahendra P; Chaturvedi, Santosh K

2018-01-01

Context: Being a professional care provider at cancer palliative care settings is demanding and stressful. Literature has indicated the prevalence of high burnout (BO) and distress; however, there is a dearth of studies in India, with no study available on professional quality of life in the field of palliative care. Aims: The aim of the present study was to explore the professional quality of life, namely-compassion satisfaction [CS], burnout [BO], and secondary traumatic stress [STS] among professional care providers at cancer palliative care centers. Settings and Design: A cross-sectional, descriptive, and quantitative study was carried out at four cancer palliative care centers in Bengaluru after the permissions and ethical approvals. Subjects and Methods: The tools used were brief sociodemographic datasheet and professional quality of life (ProQoL)-Version 5 administered with 65 participants (mean age = 32.5 and standard deviation = 11.78) with work experience of at least 6 months. Analysis: A descriptive, correlational, and inferential analysis of the quantitative data was undertaken. Results: The results revealed that an average level of CS and BO was reported by 32 (49.2%) and 35 (53.8%) study participants, respectively, while 62 (95.4%) participants reported higher STS on ProQoL scale-Version 5. Significant differences in levels of CS, BO, and STS were found based on additional training taken in palliative care (P = 0.01), designation type (P < 0.001), and workplace type (P = 0.01). Conclusion: The overall results strongly suggest that a short intervention targeting STS and BO can help the study population and further enhance their CS and patient care. PMID:29736119

"It Is Like Heart Failure. It Is Chronic … and It Will Kill You": A Qualitative Analysis of Burnout Among Hospice and Palliative Care Clinicians.

PubMed

Kavalieratos, Dio; Siconolfi, Daniel E; Steinhauser, Karen E; Bull, Janet; Arnold, Robert M; Swetz, Keith M; Kamal, Arif H

2017-05-01

Although prior surveys have identified rates of self-reported burnout among palliative care clinicians as high as 62%, limited data exist to elucidate the causes, ameliorators, and effects of this phenomenon. We explored burnout among palliative care clinicians, specifically their experiences with burnout, their perceived sources of burnout, and potential individual, interpersonal, organizational, and policy-level solutions to address burnout. During the 2014 American Academy of Hospice and Palliative Medicine/Hospice and Palliative Nurses Association Annual Assembly, we conducted three focus groups to examine personal narratives of burnout, how burnout differs within hospice and palliative care, and strategies to mitigate burnout. Two investigators independently analyzed data using template analysis, an inductive/deductive qualitative analytic technique. We interviewed 20 palliative care clinicians (14 physicians, four advanced practice providers, and two social workers). Common sources of burnout included increasing workload, tensions between nonspecialists and palliative care specialists, and regulatory issues. We heard grave concerns about the stability of the palliative care workforce and concerns about providing high-quality palliative care in light of a distressed and overburdened discipline. Participants proposed antiburnout solutions, including promoting the provision of generalist palliative care, frequent rotations on-and-off service, and organizational support for self-care. We observed variability in sources of burnout between clinician type and by practice setting, such as role monotony among full-time clinicians. Our results reinforce and expand on the severity and potential ramifications of burnout on the palliative care workforce. Future research is needed to confirm our findings and investigate interventions to address or prevent burnout. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The Cambia Sojourns Scholars Leadership Program: Conversations with Emerging Leaders in Palliative Care.

PubMed

Cruz-Oliver, Dulce M; Bernacki, Rachelle; Cooper, Zara; Grudzen, Corita; Izumi, Seiko; Lafond, Deborah; Lam, Daniel; LeBlanc, Thomas W; Tjia, Jennifer; Walter, Jennifer

2017-08-01

There is a pressing workforce shortage and leadership scarcity in palliative care to adequately meet the demands of individuals with serious illness and their families. To address this gap, the Cambia Health Foundation launched its Sojourns Scholars Leadership Program in 2014, an initiative designed to identify, cultivate, and advance the next generation of palliative care leaders. This report intends to summarize the second cohort of Sojourns Scholars' projects and their reflection on their leadership needs. This report summarizes the second cohort of sojourns scholars' project and their reflection on leadership needs. After providing a written reflection on their own projects, the second cohort participated in a group interview (fireside chat) to elicit their perspectives on barriers and facilitators in providing palliative care, issues facing leadership in palliative care in the United States, and lessons from personal and professional growth as leaders in palliative care. They analyzed the transcript of the group interview using qualitative content analysis methodology. Three themes emerged from descriptions of the scholars' project experience: challenges in palliative care practice, leadership strategies in palliative care, and three lessons learned to be a leader were identified. Challenges included perceptions of palliative care, payment and policy, and workforce development. Educating and collaborating with other clinicians and influencing policy change are important strategies used to advance palliative care. Time management, leading team effort, and inspiring others are important skills that promote effectiveness as a leader. Emerging leaders have a unique view of conceptualizing contemporary palliative care and shaping the future. Providing comprehensive, coordinated care that is high quality, patient and family centered, and readily available depends on strong leadership in palliative care. The Cambia Scholars Program represents a unique opportunity.

Defining High-Quality Palliative Care in Oncology Practice: An American Society of Clinical Oncology/American Academy of Hospice and Palliative Medicine Guidance Statement.

PubMed

Bickel, Kathleen E; McNiff, Kristen; Buss, Mary K; Kamal, Arif; Lupu, Dale; Abernethy, Amy P; Broder, Michael S; Shapiro, Charles L; Acheson, Anupama Kurup; Malin, Jennifer; Evans, Tracey; Krzyzanowska, Monika K

2016-09-01

Integrated into routine oncology care, palliative care can improve symptom burden, quality of life, and patient and caregiver satisfaction. However, not all oncology practices have access to specialist palliative medicine. This project endeavored to define what constitutes high-quality primary palliative care as delivered by medical oncology practices. An expert steering committee outlined 966 palliative care service items, in nine domains, each describing a candidate element of primary palliative care delivery for patients with advanced cancer or high symptom burden. Using modified Delphi methodology, 31 multidisciplinary panelists rated each service item on three constructs: importance, feasibility, and scope within medical oncology practice. Panelists endorsed the highest proportion of palliative care service items in the domains of End-of-Life Care (81%); Communication and Shared Decision Making (79%); and Advance Care Planning (78%). The lowest proportions were in Spiritual and Cultural Assessment and Management (35%) and Psychosocial Assessment and Management (39%). In the largest domain, Symptom Assessment and Management, there was consensus that all symptoms should be assessed and managed at a basic level, with more comprehensive management for common symptoms such as nausea, vomiting, diarrhea, dyspnea, and pain. Within the Appropriate Palliative Care and Hospice Referral domain, there was consensus that oncology practices should be able to describe the difference between palliative care and hospice to patients and refer patients appropriately. This statement describes the elements comprising high-quality primary palliative care for patients with advanced cancer or high symptom burden, as delivered by oncology practices. Oncology providers wishing to enhance palliative care delivery may find this information useful to inform operational changes and quality improvement efforts. Copyright © 2016 by American Society of Clinical Oncology.

Involvement of palliative care in euthanasia practice in a context of legalized euthanasia: A population-based mortality follow-back study

PubMed Central

Dierickx, Sigrid; Deliens, Luc; Cohen, Joachim; Chambaere, Kenneth

2017-01-01

Background: In the international debate about assisted dying, it is commonly stated that euthanasia is incompatible with palliative care. In Belgium, where euthanasia was legalized in 2002, the Federation for Palliative Care Flanders has endorsed the viewpoint that euthanasia can be embedded in palliative care. Aim: To examine the involvement of palliative care services in euthanasia practice in a context of legalized euthanasia. Design: Population-based mortality follow-back survey. Setting/participants: Physicians attending a random sample of 6871 deaths in Flanders, Belgium, in 2013. Results: People requesting euthanasia were more likely to have received palliative care (70.9%) than other people dying non-suddenly (45.2%) (odds ratio = 2.1 (95% confidence interval, 1.5–2.9)). The most frequently indicated reasons for non-referral to a palliative care service in those requesting euthanasia were that existing care already sufficiently addressed the patient’s palliative and supportive care needs (56.5%) and that the patient did not want to be referred (26.1%). The likelihood of a request being granted did not differ between cases with or without palliative care involvement. Palliative care professionals were involved in the decision-making process and/or performance of euthanasia in 59.8% of all euthanasia deaths; this involvement was higher in hospitals (76.0%) than at home (47.0%) or in nursing homes (49.5%). Conclusion: In Flanders, in a context of legalized euthanasia, euthanasia and palliative care do not seem to be contradictory practices. A substantial proportion of people who make a euthanasia request are seen by palliative care services, and for a majority of these, the request is granted. PMID:28849727

United against cancer: prevention to end-of-life care—highlights from the Uganda Cancer Institute–Palliative Care Association of Uganda Joint International Conference on Cancer and Palliative Care and the 7th Palliative Care Conference, 24–25 August 2017, Kampala, Uganda

PubMed Central

Downing, Julia; Ddungu, Henry; Kiyange, Fatia; Batuli, Mwazi; Kafeero, James; Kebirungi, Harriet; Kiwanuka, Rose; Mugisha, Noleb; Mwebesa, Eddie; Mwesiga, Mark; Namukwaya, Elizabeth; Niyonzima, Nixon; Phipps, Warren; Orem, Jackson

2017-01-01

The Uganda Cancer Institute (UCI) and the Palliative Care Association of Uganda (PCAU) jointly hosted an international conference on cancer and palliative care in August 2017 in Kampala, Uganda. At the heart of the conference rested a common commitment to see patient care improved across Uganda and the region. The theme – United Against Cancer: Prevention to End-of-Life Care – reflected this joint vision and the drive to remember that cancer care should include prevention, early diagnosis and screening, treatment, rehabilitation and palliative care. The conference brought together 451 delegates from 17 countries. The key themes of the conference included: the importance of the World Health Assembly Resolutions on Palliative Care (2014) and cancer care (2017); the need to develop a National Cancer Control Programme; strategies for effective cancer diagnosis and treatment in low- and middle-income countries; advocacy, human rights and access to essential medicines, including access to opioids and nurse prescribing; paediatric care; leadership and commitment; collaboration; resources (financial and human), the recognition that palliative care is not limited to cancer care and the importance of learning from each other. The conference also gave the opportunity to celebrate the 50th Anniversary of the UCI, with a celebration dinner attended by the Minister of Health and the US Ambassador. Participants reported that the conference was a forum that updated them in all aspects of cancer and palliative care, which challenged their knowledge, and was enlightening in terms of current treatment options for individuals with cancer. The benefits of having a joint conference were recognised, allowing for further networking between cancer and palliative care organisations. This conference, highlighting many developments in cancer and palliative care, served as a unique opportunity to bring people together and unite them in developing cancer and palliative care. PMID:29290759

Palliative Care and Health Care Utilization for Patients With End-Stage Liver Disease at the End of Life.

PubMed

Patel, Arpan A; Walling, Anne M; Ricks-Oddie, Joni; May, Folasade P; Saab, Sammy; Wenger, Neil

2017-10-01

There has been increased attention on ways to improve the quality of end-of-life care for patients with end-stage liver disease; however, there have been few reports of care experiences for patients during terminal hospitalizations. We analyzed data from a large national database to increase our understanding of palliative care for and health care utilization by patients with end-stage liver disease. We performed a cross-sectional, observational study to examine terminal hospitalizations of adults with decompensated cirrhosis using data from the National Inpatient Sample from 2009 through 2013. We collected data on palliative care consultation and total hospital costs, and performed multivariate regression analyses to identify factors associated with palliative care consultation. We also investigated whether consultation was associated with lower costs. Among hospitalized adults with terminal decompensated cirrhosis, 30.3% received palliative care; the mean cost per hospitalization was $48,551 ± $1142. Palliative care consultation increased annually, and was provided to 18.0% of patients in 2009 and to 36.6% of patients in 2013 (P < .05). The mean cost for the terminal hospitalization did not increase significantly ($47,969 in 2009 to $48,956 in 2013, P = .77). African Americans, Hispanics, Asians, and liver transplant candidates were less likely to receive palliative care, whereas care in large urban teaching hospitals was associated with a higher odds of receiving consultation. Palliative care was associated with lower procedure burden-after adjusting for other factors, palliative care was associated with a cost reduction of $10,062. Palliative care consultation for patients with end-stage liver disease increased from 2009 through 2013. Palliative care consultation during terminal hospitalizations is associated with lower costs and procedure burden. Future research should evaluate timing and effects of palliative care on quality of end-of-life care in this population. Copyright © 2017 AGA Institute. Published by Elsevier Inc. All rights reserved.

Palliative Care Leadership Centers Are Key To The Diffusion Of Palliative Care Innovation.

PubMed

Cassel, J Brian; Bowman, Brynn; Rogers, Maggie; Spragens, Lynn H; Meier, Diane E

2018-02-01

Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.

Embedding a Palliative Approach in Nursing Care Delivery

PubMed Central

Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally

2017-01-01

A palliative approach involves adapting and integrating principles and values from palliative care into the care of persons who have life-limiting conditions throughout their illness trajectories. The aim of this research was to determine what approaches to nursing care delivery support the integration of a palliative approach in hospital, residential, and home care settings. The findings substantiate the importance of embedding the values and tenets of a palliative approach into nursing care delivery, the roles that nurses have in working with interdisciplinary teams to integrate a palliative approach, and the need for practice supports to facilitate that embedding and integration. PMID:27930401

Grief and Palliative Care: Mutuality

PubMed Central

Moon, Paul J

2013-01-01

Grief and palliative care are interrelated and perhaps mutually inclusive. Conceptually and practically, grief intimately relates to palliative care, as both domains regard the phenomena of loss, suffering, and a desire for abatement of pain burden. Moreover, the notions of palliative care and grief may be construed as being mutually inclusive in terms of one cueing the other. As such, the discussions in this article will center on the conceptualizations of the mutuality between grief and palliative care related to end-of-life circumstances. Specifically, the complementarity of grief and palliative care, as well as a controvertible view thereof, will be considered. PMID:25278758

Palliative and end of life care in solid organ transplantation.

PubMed

Wentlandt, K; Weiss, A; O'Connor, E; Kaya, E

2017-12-01

Palliative care is an interprofessional approach that focuses on quality of life of patients who are facing life-threatening illness. Palliative care is consistently associated with improvements in advance care planning, patient and caregiver satisfaction, quality of life, symptom burden, and lower healthcare utilization. Most transplant patients have advanced chronic disease, significant symptom burden, and mortality awaiting transplant. Transplantation introduces new risks including perioperative death, organ rejection, infection, renal insufficiency, and malignancy. Numerous publications over the last decade identify that palliative care is well-suited to support these patients and their caregivers, yet access to palliative care and research within this population are lacking. This review describes palliative care and summarizes existing research supporting palliative intervention in advanced organ failure and transplant populations. A proposed model to provide palliative care in parallel with disease-directed therapy in a transplant program has the potential to improve symptom burden, quality of life, and healthcare utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is a tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. © 2017 The American Society of Transplantation and the American Society of Transplant Surgeons.

Palliative care for respiratory disease: An education model of care.

PubMed

Bowman, Brynn; Meier, Diane E

2018-02-01

That palliative care improves quality of life for seriously ill patients and their families is well known - but how can healthcare providers ensure that the palliative needs of all patients are being assessed and addressed? A growing number of curricula in core palliative care practices have been developed to ensure that clinicians from all specialties and disciplines have the necessary training to manage pain and symptoms and discuss care goals with patients and families. Through broad-based training in core palliative care skills, combined with referral to specialty palliative care for high-need patients, providers can improve quality of life for their patients with respiratory disease.

[Providing regular relief; considerations for palliative care in the Netherlands].

PubMed

Crul, B J; van Weel, C

2001-10-20

Over the last few decades the attention devoted to the palliative aspects of medicine, particularly those in hospital care, has declined due to the emphasis on medical technology. In Anglo-Saxon countries a review of this development resulted in structured palliative care that benefited terminally ill patients with a progressive fatal disease, especially cancer patients. Due to increasing national and international criticism of both the practice of euthanasia (assumed to be too liberal) and the lack of attention devoted to structured palliative care in the Netherlands, the Dutch government decided to improve the structure of palliative care. The government's viewpoint is based on the assumption that good palliative care that includes adequate pain control benefits patient care and might eventually lead to fewer requests for euthanasia. The improvements to palliative care should be realised by means of improvements in the structure, training and knowledge. Six academic medical clusters have been designated as Centres for the Development of Palliative Care (Dutch acronym: COPZ) for a 5-year period. Each COPZ must develop the various aspects needed to improve palliative care within the region it serves and ensure that its activities are carefully coordinated with those in the other centres. Research will focus on measuring the efficacy of palliative care as well as ethical and epidemiological aspects. A government committee will assess the appropriateness of the activities undertaken by each of the centres.

Identifying models of delivery, care domains and quality indicators relevant to palliative day services: a scoping review protocol.

PubMed

O'Connor, Seán R; Dempster, Martin; McCorry, Noleen K

2017-05-16

With an ageing population and increasing numbers of people with life-limiting illness, there is a growing demand for palliative day services. There is a need to measure and demonstrate the quality of these services, but there is currently little agreement on which aspects of care should be used to do this. The aim of the scoping review will be to map the extent, range and nature of the evidence around models of delivery, care domains and existing quality indicators used to evaluate palliative day services. Electronic databases (MEDLINE, EMBASE, CINAHL, PsycINFO, Cochrane Central Register of Controlled Trials) will be searched for evidence using consensus development methods; randomised or quasi-randomised controlled trials; mixed methods; and prospective, longitudinal or retrospective case-control studies to develop or test quality indicators for evaluating palliative care within non-residential settings, including day hospices and community or primary care settings. At least two researchers will independently conduct all searches, study selection and data abstraction procedures. Meta-analyses and statistical methods of synthesis are not planned as part of the review. Results will be reported using numerical counts, including number of indicators in each care domain and by using qualitative approach to describe important indicator characteristics. A conceptual model will also be developed to summarise the impact of different aspects of quality in a palliative day service context. Methodological quality relating to indicator development will be assessed using the Appraisal of Indicators through Research and Evaluation (AIRE) tool. Overall strength of evidence will be assessed using the Grading of Recommendations, Assessment, Development, and Evaluation (GRADE) system. Final decisions on quality assessment will be made via consensus between review authors. Identifying, developing and implementing evidence-based quality indicators is critical to the evaluation and continued improvement of palliative care. Review findings will be used to support clinicians and policymakers make decisions on which quality indicators are most appropriate for evaluating day services at the patient and service level, and to identify areas for further research.

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey

PubMed Central

Eva, Gail; Morgan, Deidre

2018-01-01

Background: Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. Aim: This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists’ perceptions of opportunities and challenges when delivering and developing palliative care services. Design: A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). Results: In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Conclusion: Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care. PMID:29756556

Mapping the scope of occupational therapy practice in palliative care: A European Association for Palliative Care cross-sectional survey.

PubMed

Eva, Gail; Morgan, Deidre

2018-05-01

Occupational therapists play an integral role in the care of people with life-limiting illnesses. However, little is known about the scope of occupational therapy service provision in palliative care across Europe and factors influencing service delivery. This study aimed to map the scope of occupational therapy palliative care interventions across Europe and to explore occupational therapists' perceptions of opportunities and challenges when delivering and developing palliative care services. A 49-item online cross-sectional survey comprised of fixed and free text responses was securely hosted via the European Association for Palliative Care website. Survey design, content and recruitment processes were reviewed and formally approved by the European Association for Palliative Care Board of Directors. Descriptive statistics and thematic analysis were used to analyse data. Setting/respondents: Respondents were European occupational therapists whose caseload included palliative care recipients (full-time or part-time). In total, 237 valid responses were analysed. Findings demonstrated a consistency in occupational therapy practice in palliative care between European countries. Clinician time was prioritised towards indirect patient care, with limited involvement in service development, leadership and research. A need for undergraduate and postgraduate education was identified. Organisational expectations and understanding of the scope of the occupational therapy role constrain the delivery of services to support patients and carers. Further development of occupational therapy in palliative care, particularly capacity building in leadership and research activities, is warranted. There is a need for continuing education and awareness raising of the role of occupational therapy in palliative care.

Palliative care for advanced dementia: Knowledge and attitudes of long-term care staff.

PubMed

Chen, I-Hui; Lin, Kuan-Yu; Hu, Sophia H; Chuang, Yeu-Hui; Long, Carol O; Chang, Chia-Chi; Liu, Megan F

2018-02-01

To investigate the knowledge of and attitudes towards palliative care for advanced dementia and their associations with demographics among nursing staff, including nurses and nursing assistants, in long-term care settings. Nursing facilities are places where persons with dementia die; therefore, providing quality end-of-life care to residents with advanced dementia is crucial. To date, little attention has been paid to palliative care practice for patients with advanced dementia. A descriptive, cross-sectional, survey design was used. In total, a sample of 300 nurses (n = 125) and nursing assistants (n = 175) working in long-term care settings in Taiwan participated in this study. Two instruments were administered: demographic characteristics and responses to the Questionnaire of Palliative Care for Advanced Dementia. Descriptive statistics and multiple regression were used for data analysis. Overall, the nurses and nursing assistants had moderate mean scores for both knowledge of and attitudes regarding palliative care for advanced dementia. Additionally, nursing staff who were nurses with greater work experience and those who had received palliative care and hospice training had greater knowledge of palliative care. In addition, nursing staff who had received dementia care training and who had worked in nursing homes had higher levels of positive attitudes towards palliative care. This study indicates the need to provide nurses and nursing assistants with more information about palliative care practice for people with advanced dementia. Particularly, providing education to those who are nursing assistants, who have less working experience, who have not received palliative and dementia care training, and who have not worked in nursing homes can improve overall nursing staff knowledge of and attitudes towards palliative care. Continuing education in principles of palliative care for advanced dementia is necessary for currently practicing nursing staff and should be developed according to their educational background and needs. © 2017 John Wiley & Sons Ltd.

Palliative Care in Cancer

MedlinePlus

... palliative care team works in conjunction with your oncology care team to manage your care and maintain ... among family member, caregivers, and members of the oncology care team. When is palliative care used in ...

78 FR 53152 - Submission for OMB Review; Comment Request: Palliative Care: Conversations Matter Evaluation

Federal Register 2010, 2011, 2012, 2013, 2014

2013-08-28

...; Comment Request: Palliative Care: Conversations Matter Evaluation SUMMARY: Under the provisions of Section... must be requested in writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation... Use of Information Collection: NINR developed Palliative Care: Conversations Matter, a pediatric...

Japanese Bereaved Family Members' Perspectives of Palliative Care Units and Palliative Care: J-HOPE Study Results.

PubMed

Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo

2016-06-01

The study purpose was to understand the perspectives of bereaved family members regarding palliative care unit (PCU) and palliative care and to compare perceptions of PCU before admission and after bereavement. A cross-sectional questionnaire survey was conducted, and the perceptions of 454 and 424 bereaved family members were obtained regarding PCU and palliative care, respectively. Family members were significantly more likely to have positive perceptions after bereavement (ranging from 73% to 80%) compared to before admission (ranging from 62% to 71%). Bereaved family members who were satisfied with medical care in the PCU had a positive perception of the PCU and palliative care after bereavement. Respondents younger than 65 years of age were significantly more likely to have negative perceptions of PCU and palliative care. © The Author(s) 2015.

Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research.

PubMed

Ghirotto, Luca; Busani, Elena; Salvati, Michela; Di Marco, Valeria; Caldarelli, Valeria; Artioli, Giovanna

2018-05-29

Qualitative research is pivotal in gaining understanding of individuals' experiences in pediatric palliative care. In the past few decades, the number of qualitative studies on pediatric palliative care has increased slightly, as has interest in qualitative research in this area. Nonetheless, a limited number of such studies have included the first-person perspective of children. The aim of this article is to understand the contribution of previous qualitative research on pediatric palliative care that included the voices of children. A systematic review of qualitative studies and a meta-summary were conducted. MEDLINE, CINAHL, PsycINFO, PsycARTICLES, and ERIC were searched without limitations on publication date or language. Eligible articles were qualitative research articles in which the participants were children ranging in age from 3 to 18 years.ResultWe retrieved 16 qualitative research articles reporting on 12 unique studies, and we selected two mixed-method articles. The meta-summary shows eight themes: the relationship with professional caregivers, pain and its management, "living beyond pain," the relationship between pediatric patients and their families, children's view on their treatment and service provision, meanings children give to their end-of-life situation, consequences of clinical decisions, and the relationships among children in pediatric palliative care and their peers.Significance of resultsThis meta-summary presents the "state of the art" of pediatric palliative care qualitative research on children and highlights additional research areas that warrant qualitative study.

Randomised clinical trial of early specialist palliative care plus standard care versus standard care alone in patients with advanced cancer: The Danish Palliative Care Trial.

PubMed

Groenvold, Mogens; Petersen, Morten Aagaard; Damkier, Anette; Neergaard, Mette Asbjoern; Nielsen, Jan Bjoern; Pedersen, Lise; Sjøgren, Per; Strömgren, Annette Sand; Vejlgaard, Tove Bahn; Gluud, Christian; Lindschou, Jane; Fayers, Peter; Higginson, Irene J; Johnsen, Anna Thit

2017-10-01

Beneficial effects of early palliative care have been found in advanced cancer, but the evidence is not unequivocal. To investigate the effect of early specialist palliative care among advanced cancer patients identified in oncology departments. The Danish Palliative Care Trial (DanPaCT) (ClinicalTrials.gov NCT01348048) is a multicentre randomised clinical trial comparing early referral to a specialist palliative care team plus standard care versus standard care alone. The planned sample size was 300. At five oncology departments, consecutive patients with advanced cancer were screened for palliative needs. Patients with scores exceeding a predefined threshold for problems with physical, emotional or role function, or nausea/vomiting, pain, dyspnoea or lack of appetite according to the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) were eligible. The primary outcome was the change in each patient's primary need (the most severe of the seven QLQ-C30 scales) at 3- and 8-week follow-up (0-100 scale). Five sensitivity analyses were conducted. Secondary outcomes were change in the seven QLQ-C30 scales and survival. Totally 145 patients were randomised to early specialist palliative care versus 152 to standard care. Early specialist palliative care showed no effect on the primary outcome of change in primary need (-4.9 points (95% confidence interval -11.3 to +1.5 points); p = 0.14). The sensitivity analyses showed similar results. Analyses of the secondary outcomes, including survival, also showed no differences, maybe with the exception of nausea/vomiting where early specialist palliative care might have had a beneficial effect. We did not observe beneficial or harmful effects of early specialist palliative care, but important beneficial effects cannot be excluded.

Challenges in defining 'palliative care' for the purposes of clinical trials.

PubMed

Bausewein, Claudia; Higginson, Irene J

2012-12-01

Palliative care has become part of mainstream medicine with increasing evidence about the effectiveness of specialist palliative care (SPC) on patient and family outcomes. Comparison of studies testing SPC interventions is challenging as types of interventions and reporting of components of the intervention vary. In consequence, study results are difficult to interpret. There is a continuous lack of clarity in palliative care definitions. For clinical trials, multidisciplinary care, supportive care documentation, symptom assessment and symptom management are suggested as key domains. In recent studies testing palliative care as an intervention SPC physicians and palliative care nurses were core members of multiprofessional teams, but integration of other team members varied. Management of symptoms and psychosocial issues were central to SPC with various other areas described. Services were delivered by hospital and community support teams, in palliative care units, outpatient clinics and hospital. Cost information was only provided by a few studies. Due to the lack of an agreed definition of palliative care and heterogeneity in reporting of components of an SPC intervention comparison of studies remains challenging. Key aspects of palliative care interventions are incurable disease, multidisciplinary approach, focus on symptom management including standardized assessment, psychosocial and family support, and (advance) care planning. Detailed information about all aspects of the intervention should be provided.

Current state of psychiatric involvement on palliative care consult services: results of a national survey.

PubMed

Patterson, Kevin R; Croom, Andrea R; Teverovsky, Esther G; Arnold, Robert

2014-06-01

Palliative care consult services have emerged as an excellent resource for physicians seeking help with patients' symptoms. Symptoms include those of a psychiatric nature (e.g., depression, anxiety, delirium); however, little information is known about whether palliative care services include psychiatric input as part of multidisciplinary teams. To explore 1) the current level of collaboration between psychiatrists and palliative care consult services across the U.S. and 2) the factors that support or restrict such involvement. A national survey was developed and distributed electronically to program directors identified in the National Palliative Care Registry maintained by the Center to Advance Palliative Care. Analyses examined trends in psychiatry involvement with hospital-based palliative care teams. The survey had a 59% response rate, with final analyses including surveys completed by 260 palliative care program directors (67% inclusion rate from total respondents). Seventy-two percent of respondents reported some form of involvement with a psychiatrist on their palliative care service, with only 10% of those identifying a psychiatrist as a full- or part-time member of the team. Most respondents reported that they would like psychiatrists to be more involved with the palliative care services (71%). Secondary analyses of qualitative responses identified common impediments to increased psychiatry involvement, which included financial constraints, provider interest, and perceived disciplinary disconnect. There are shared objectives between psychiatry and palliative care; however, currently, co-involvement on treatment teams is quite limited. Future research is needed to identify ways to facilitate the interface of palliative care and psychiatry. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Palliative Care-Albania.

PubMed

Rama, Rudina; Çarçani, Valbona; Prifti, Fatmir; Huta, Kristo; Xhixha, Ali; Connor, Stephen R

2018-02-01

Sixty percent of cancer patients are diagnosed with advanced stages of disease and those diagnosed in early stages face challenges to receive adequate treatment. Palliative care has had significant developments in recent years in Albania because of a close partnership with the Ministry of Health, local nonprofit organizations, and the Open Society Foundation Albania. In 2011, a five-year action plan for palliative care as one of four parts of the National Cancer Control Plan was approved. At the end of 2014, the first palliative care law was approved by Parliament. Palliative care by-laws, documents, standards, clinical protocols, and guidelines for adults and children have been developed. Training and education are being provided to primary care professionals. Curricula on palliative care have been developed for the faculty of medicine, nursing high schools, and social work. About 80% of essential medications used in palliative care are available in Albania, 50% of these are paid for and have some access restrictions, and meanwhile the opiophobia still remains an enormous barrier. In the last three years, significant progress has been made in service provision. From only one public palliative care service in 2013, there are now eight palliative care services in eight of the 11 regional hospitals. By the end of 2016, it is expected that palliative care services will be available in all regional hospitals in the country. Copyright © 2017. Published by Elsevier Inc.

Flemish palliative care nurses' attitudes toward euthanasia: a quantitative study.

PubMed

Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert

2009-10-01

To adequately measure the attitudes of Flemish palliative care nurses toward euthanasia, and assess the relationship between these attitudes and demographic factors and the (perceived) influence of experience in palliative care on death anxiety. An anonymous questionnaire was sent to all nurses (n=589) employed in palliative care in Flanders, Belgium: 70.5% of the nurses (n=415) responded. A majority of the nurses supported the Belgian law regulating euthanasia but also believed that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care. Three clusters were discovered: staunch advocates of euthanasia (150 nurses, 41.1%); moderate advocates of euthanasia (135 nurses, 37%); and (moderate) opponents of euthanasia (80 nurses, 21.9%). An absolute opposition between advocates and opponents of euthanasia was not observed. A statistically significant relationship was found between the euthanasia clusters and years of experience in palliative care, and (perceived) influence of experience in palliative care on anxiety when a patient dies. Flemish palliative care nurses' attitudes toward euthanasia are nuanced and contextual. By indicating that most euthanasia requests disappear as soon as a patient experiences the benefits of good palliative care, the nurses applied a 'palliative filter' a standard procedure in the case of a euthanasia request.

[Data on palliative care in Germany : Which data sources are available and what do they tell?

PubMed

Prütz, Franziska; Saß, Anke-Christine

2017-01-01

Palliative care is more and more in the focus of politics and the public. Although provision and utilization of palliative care have increased considerably in recent years, there is still a great need for palliative services and a comprehensive supply has not yet been achieved. Reliable and continually available data are indispensable to describe developments in Germany, to identify existing gaps in palliative care provision, and to assess the impact of relevant policies. In this article, we present a systematic outline of publicly available data sources on palliative care in Germany and point out their potentials and limitations. We show that mainly data on palliative care provision are available. Data on utilization are basically limited to inpatient and specialized outpatient palliative care ("spezialisierte ambulante Palliativversorgung", SAPV). Periodical analyses of routine data, e. g. from statutory health insurances or from the Association of Statutory Health Insurance Physicians, would be helpful to fill these data gaps. Monitoring the sociodemographic characteristics of users of palliative care could also be of major interest. Another important indicator is the place of death. The difference between the places where people die and where they wish to die indicates that there is a continuous need to strengthen outpatient structures of palliative care.

The intersection of need and opportunity: assessing and capitalizing on opportunities to expand hospital-based palliative care services.

PubMed

Rabow, Michael W; Pantilat, Steven Z; Kerr, Kathleen; Enguidanos, Susan; Ferrell, Bruce; Goldstein, Rebecca; Pankratz, Charles; Picchi, Tina; Rosenfeld, Kenneth E; Stone, Susan C

2010-10-01

To develop and grow most effectively, palliative care programs must consider how best to align their mission with that of their institution. To do so, programs must identify their institutional mission and needs, what palliative care can do to address those needs given available resources, and how the palliative care team can measure and document its value. Such an approach encourages the palliative care team to think strategically and to see themselves and their service as a solution to issues and concerns within the institution. It also helps a palliative care team decide which, among many potential opportunities and possible initiatives, is the one most likely to be supported by the institution and have a recognized and significant impact. We present five case studies to demonstrate how successful programs identify and address institutional needs to create opportunities for palliative care program growth. These case studies can serve as models for other programs seeking to develop or expand their palliative care services.

Out-of-hours primary care use at the end of life: a descriptive study

PubMed Central

Fisher, Rebecca FR; Lasserson, Daniel; Hayward, Gail

2016-01-01

Background Out-of-hours (OOH) primary care services are integral to the care of patients at end of life. Little is known about the OOH service usage of patients with palliative care needs. Aim To describe patterns of usage of patients presenting to an OOH service and coded as ‘palliative’. Design and setting A descriptive study of data from the Oxfordshire OOH service. Method A database of all patient contacts with the Oxfordshire OOH service from a 4-year period (June 2010–August 2014) was used to extract demographic and service usage data for all contacts to which clinicians had applied a ‘palliative’ code. Observed differences in demographic features between palliative and non-palliative contacts were tested using logistic regression. Results Out of a total of 496 931 contacts, there were 6045 contacts coded palliative; those ‘palliative’ contacts provided care to 3760 patients. Patients contacting the OOH service with palliative care needs did so predominantly during weekend daytime periods, and over a third had more than one contact. Patients were predictably older than the average population, but contacts coded as ‘palliative’ were relatively less deprived than contacts to the OOH service for all causes, even after adjusting for age and sex. Conclusion The current ‘one-size-fits-most’ model of OOH primary care may not allow for the specific needs of patients at the end of life. Wider analysis of palliative patient flow through urgent care services is needed to identify whether healthcare access at the end of life is inequitable, as well as the capacity requirements of a community-based service that can provide high-quality end-of-life care. PMID:27381487

Evaluating an holistic assessment tool for palliative care practice.

PubMed

McIlfatrick, Sonja; Hasson, Felicity

2014-04-01

To evaluate a holistic assessment tool for palliative care practice. This included identifying patients' needs using the holistic tool and exploring the usability, applicability and barriers and facilitators towards implementation in practice. The delivery of effective holistic palliative care requires a careful assessment of the patients' needs and circumstances. Whilst holistic assessment of palliative care needs is advocated, questions exist around the appropriateness of tools to assist this process. Mixed-method research design. Data collection involved an analysis of piloted holistic assessments undertaken using the tool (n = 132) and two focus groups with healthcare professionals (n = 10). The tool enabled health professionals to identify and gain an understanding of the needs of the patients, specifically in relation to the physical healthcare needs. Differences, however, between the analysis of the tool documentation and focus group responses were identified in particular areas. For example, 59 (68·8%) respondents had discussed preferred priorities of care with the patient; however, focus group comments revealed participants had concerns around this. Similarly, whilst over half of responses (n = 50; 57·5%) had considered a prognostic clinical indicator for the patient as an action, focus group results indicated questions around healthcare professionals' knowledge and perceived usefulness of such indicators. Positive aspects of the tool were that it was easy to understand and captured the needs of individuals. Negative aspects of the tool were that it was repetitive and the experience of assessors required consideration. The tool evaluation identified questions regarding holistic assessment in palliative care practice and the importance of communication. A holistic assessment tool can support patient assessment and identification of patients' needs in the 'real world' of palliative care practice, but the 'tool' is merely an aid to assist professionals to discuss difficult and sensitive aspects of care. © 2013 John Wiley & Sons Ltd.

The Impact of Public Health Awareness Campaigns on the Awareness and Quality of Palliative Care

PubMed Central

2017-01-01

Abstract Objective: The right to health includes a right of access to good quality palliative care, but inequalities persist. Raising awareness is a key plank of the public health approach to palliative care, but involves consideration of subjects most of us prefer not to address. This review addresses the question: “do public health awareness campaigns effectively improve the awareness and quality of palliative care”? Background: The evidence shows that public awareness campaigns can improve awareness of palliative care and probably improve quality of care, but there is a lack of evidence about the latter. Methods: Rapid review and synthesis. Results: A comprehensive public awareness campaign about palliative care (including advance care planning and end-of-life decision making) should be based on clear and shared terminology, use well piloted materials, and the full range of mass media to suit different ages, cultures, and religious/spiritual perspectives. Arts and humanities have a role to play in allowing individuals and communities to express experiences of illness, death, and grief and encourage conversation and thoughtful reflection. There is evidence about key factors for success: targeting, networking, and use of specific, measurable, achievable, realistic time-bound objectives; continuous evaluation; and complementarity to national and international policy. Discussion: Campaigns should be located within the framework of public health promotion and the synergy between short national mass media campaigns and longer term local community action initiatives carefully considered. National and local projects to raise awareness should identify and address any barriers at the level of individuals, communities, and systems of care, for example, literacy skills and unequal access to resources. PMID:29283867

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

PubMed

Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

2014-01-01

The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

Palliative Care Use Among Patients With Solid Cancer Tumors: A National Cancer Data Base Study.

PubMed

Osagiede, Osayande; Colibaseanu, Dorin T; Spaulding, Aaron C; Frank, Ryan D; Merchea, Amit; Kelley, Scott R; Uitti, Ryan J; Ailawadhi, Sikander

2018-07-01

Palliative care has been increasingly recognized as an important part of cancer care but remains underutilized in patients with solid cancers. There is a current gap in knowledge regarding why palliative care is underutilized nationwide. To identify the factors associated with palliative care use among deceased patients with solid cancer tumors. Using the 2016 National Cancer Data Base, we identified deceased patients (2004-2013) with breast, colon, lung, melanoma, and prostate cancer. Data were described as percentages. Associations between palliative care use and patient, facility, and geographic characteristics were evaluated through multivariate logistic regression. A total of 1 840 111 patients were analyzed; 9.6% received palliative care. Palliative care use was higher in the following patient groups: survival >24 months (17% vs 2%), male (54% vs 46%), higher Charlson-Deyo comorbidity score (16% vs 8%), treatment at designated cancer programs (74% vs 71%), lung cancer (76% vs 28%), higher grade cancer (53% vs 24%), and stage IV cancer (59% vs 13%). Patients who lived in communities with a greater percentage of high school degrees had higher odds of receiving palliative care; Central and Pacific regions of the United States had lower odds of palliative care use than the East Coast. Patients with colon, melanoma, or prostate cancer had lower odds of palliative care than patients with breast cancer, whereas those with lung cancer had higher odds. Palliative care use in solid cancer tumors is variable, with a preference for patients with lung cancer, younger age, known insurance status, and higher educational level.

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care

PubMed Central

Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

2015-01-01

The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested. PMID:25628769

A Call for Integrated and Coordinated Palliative Care

PubMed Central

2017-01-01

Abstract Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not have access to regional, comprehensive, integrated palliative care. Work needs to be directed toward planning palliative care services that is integrated into the healthcare and social care system. To further this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care. PMID:29283874

Differences in home-based palliative care service utilisation of people with cancer and non-cancer conditions.

PubMed

Kralik, Debbie; Anderson, Barbara

2008-11-01

To identify home-based palliative care service utilisation by people with cancer and non-cancer conditions. Palliative care knowledge and skill have been derived from working with people with cancer. People with chronic conditions are now referred for home-based palliative care; however, there has been few studies published that have explored the impact of service utilisation by people with end-stage chronic conditions. The Australia-modified Karnofsky Performance Status (AKPS) scale was calculated for each person upon referral for home-based palliative care services to determine the functional capacity of the individual at the point of referral. Clients were divided into those with cancer diagnosis and those with non-cancer diagnosis. Service utilisation of the individual client was determined until separation from the palliative care service. The study was undertaken in 2007. The majority of people with cancer (63%) and non-cancer (71%) were assessed as having an AKPS score between 50-60. Thirty-one cancer clients (18·7%) and three non-cancer clients (7·1%) had an AKPS score between 70-90. This suggests that people with cancer are referred to palliative care services earlier than people with non-cancer conditions. People with non-cancer conditions were substantially higher users of home-based palliative care services over a longer period of time. Home-based palliative care service utilisation was higher for people with non-cancer conditions. Cost analysis research is recommended to delineate the actual costs of home-based palliative care service provision between people with cancer and non-cancer conditions. There is growing awareness of the need for palliative care services for people with non-cancer conditions. However, these services are provided for longer periods of time for this client group. Implications for practice are that the palliative care needs of people with non-cancer conditions may not be met within current palliative care service provision. There may be funding implications for home-based palliative care services that intend to meet the needs of people at end of life with non-cancer conditions. © 2008 The Authors. Journal compilation © 2008 Blackwell Publishing Ltd.

Patients' and carers' perspectives of palliative care in general practice: A systematic review with narrative synthesis.

PubMed

Green, Emilie; Knight, Selena; Gott, Merryn; Barclay, Stephen; White, Patrick

2018-04-01

General practitioners have overall responsibility for community care, including towards end of life. Current policy places generalists at the centre of palliative care provision. However, little is known about how patients and carers understand the general practitioner's role. To explore patient and carer perspectives of (1) the role of the general practitioner in providing palliative care to adult patients and (2) the facilitators and barriers to the general practitioner's capacity to fulfil this perceived role. Systematic literature review and narrative synthesis. Seven electronic databases (MEDLINE, Embase, PsycINFO, BNI, CINAHL, Cochrane and HMIC) were searched from inception to May 2017. Two reviewers independently screened papers at title, abstract and full-text stages. Grey literature, guideline, hand searches of five journals and reference list/citation searches of included papers were undertaken. Data were extracted, tabulated and synthesised using narrative, thematic analysis. A total of 25 studies were included: 14 employed qualitative methods, 8 quantitative survey methods and 3 mixed-methods. Five key themes were identified: continuity of care, communication between primary and secondary care, contact and accessibility, communication between general practitioner and patient, and knowledge and competence. Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development.

A matter of definition--key elements identified in a discourse analysis of definitions of palliative care.

PubMed

Pastrana, T; Jünger, S; Ostgathe, C; Elsner, F; Radbruch, L

2008-04-01

For more than 30 years, the term "palliative care" has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term 'palliative medicine' and 'palliative care' in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept 'palliative care'. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.

International palliative care: Middle East experience as a model for global palliative care.

PubMed

Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael

2015-05-01

Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. Copyright © 2015 Elsevier Inc. All rights reserved.

Requests from professional care providers for consultation with palliative care consultation teams.

PubMed

Groot, Marieke M; Vernooij-Dassen, Myrra J F J; Courtens, Annemie M; Kuin, Annemieke; van der Linden, Barbara A; van Zuylen, Lia; Crul, Ben J P; Grol, Richard P T M

2005-11-01

Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care. As part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care. Professional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables. The results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.

Nationwide Survey of Palliative Care for Patients With Heart Failure in Japan.

PubMed

Kuragaichi, Takashi; Kurozumi, Yuma; Ohishi, Shogo; Sugano, Yasuo; Sakashita, Akihiro; Kotooka, Norihiko; Suzuki, Makoto; Higo, Taiki; Yumino, Dai; Takada, Yasuko; Maeda, Seiko; Yamabe, Saori; Washida, Koichi; Takahashi, Tomonori; Ohtani, Tomohito; Sakata, Yasushi; Sato, Yukihito

2018-04-25

Palliative care for heart failure (HF) patients is recommended in Western guidelines, so this study aimed to clarify the current status of palliative care for HF patients in Japan.Methods and Results:A survey was sent to all Japanese Circulation Society-authorized cardiology training hospitals (n=1,004) in August 2016. A total of 544 institutions (54%) returned the questionnaire. Of them, 527 (98%) answered that palliative care is necessary for patients with HF. A total of 227 (42%) institutions held a palliative care conference for patients with HF, and 79% of the institutions had <10 cases per year. Drug therapy as palliative care was administered at 403 (76%) institutions; morphine (87%) was most frequently used. Among sedatives, dexmedetomidine (33%) was administered more often than midazolam (29%) or propofol (20%). Regarding the timing of end-of-life care, most institutions (84%) reported having considered palliative care when a patient reached the terminal stage of HF. Most frequently, the reason for the decision at the terminal stage was "difficulty in discontinuing cardiotonics." A major impediment to the delivery of palliative care was "difficulty predicting an accurate prognosis." This large-scale survey showed the characteristics of palliative care for HF in Japan. The present findings may aid in the development of effective end-of-life care systems.

Palliative Care Psychiatry: Update on an Emerging Dimension of Psychiatric Practice

PubMed Central

Fairman, Nathan

2013-01-01

Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027

Extending specialist palliative care to all?

PubMed

Field, D; Addington-Hall, J

1999-05-01

How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five potential barriers to extending specialist palliative care services to non-cancer patients in Britain. These are the skill base of current specialists in palliative care, difficulties in identifying candidates for specialist palliative care, the views of potential users of these services, resource implications and vested interests in present health service arrangements.

Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home.

PubMed

Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J A

2007-11-01

This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patients were interviewed by the coordinating general practitioner concerning their sociodemographic background, medical history, psychological status, and symptoms. During the palliative care process, symptoms and functioning of the patients were recorded by the physician and nurses. The results show that cancer patients enrolled in palliative care at home have many symptoms, often associated with metastatic disease and comorbidities. The palliative care teams delivered frequent and various interventions. The number of symptoms decreased considerably, as did pain intensity and the intensity of other symptoms. Patients living in urban areas and with low income particularly benefited from a reduction in the number of symptoms they displayed. Cancer patients who needed palliative care benefited significantly from this at-home palliative care service.

Palliative care outcomes in surgical oncology patients with advanced malignancies: a mixed methods approach

PubMed Central

Baker, Karen; Stolar, Marilyn; Miller-Davis, Claiborne; Ames, Nancy; Yates, Jan; Bolle, Jacques; Pereira, Donna; St. Germain, Diane; Handel, Daniel; Berger, Ann

2012-01-01

Purpose To prospectively compare outcomes and processes of hospital-based early palliative care with standard care in surgical oncology patients (N = 152). Methods A randomized, mixed methods, longitudinal study evaluated the effectiveness of a hospital-based Pain and Palliative Care Service (PPCS). Interviews were conducted presurgically and at follow-up visits up to 1 year. Primary outcome measures included the Gracely Pain Intensity and Unpleasantness Scales and the Symptom Distress Scale. Qualitative interviews assessed social support, satisfaction with care, and communication with providers. Survival analysis methods explored factors related to treatment crossover and study discontinuation. Models for repeated measures within subjects over time explored treatment and covariate effects on patient-reported pain and symptom distress. Results None of the estimated differences achieved statistical significance; however, for those who remained on study for 12 months, the PPCS group performed better than their standard of care counterparts. Patients identified consistent communication, emotional support, and pain and symptom management as positive contributions delivered by the PPCS. Conclusions It is unclear whether lower pain perceptions despite greater symptom distress were clinically meaningful; however, when coupled with the patients’ perceptions of their increased resources and alternatives for pain control, one begins to see the value of an integrated PPCS. PMID:22101861

From pregnancy to palliative care: advancing professional midwifery practice?

PubMed

Peacock, Valerie; Price, Jayne; Nurse, Sharon

2015-11-01

Historically midwives may have not considered palliative care as a part of their professional role. Enhanced technologies and antenatal screening have broadened the boundaries of care. However do midwives truly embrace the philosophy of palliative care into their practice? This paper presents the discussion round a case study that demonstrates the evolving area of advanced practice: perinatal palliative care. What we highlight is that midwives in fact have an important collaborative role to play in ensuring that palliative care for the baby and family starts as soon as a life-limiting condition is recognised, thus ensuring best care and support are provided for those parents and families for whom pregnancy sadly leads to palliative care. Five key lessons for practice are outlined.

An Australian casemix classification for palliative care: technical development and results.

PubMed

Eagar, Kathy; Green, Janette; Gordon, Robert

2004-04-01

To develop a palliative care casemix classification for use in all settings including hospital, hospice and home-based care. 3866 palliative care patients who, in a three-month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. Each day of care was costed using actual cost data from each study site. Regression tree analysis was used to group episodes of care with similar costs and clinical characteristics. In the resulting classification, the Australian National Sub-acute and Non-acute Patient (AN-SNAP) Classification Version 1, the branch for classifying inpatient palliative care episodes (including hospice care) has 11 classes and explains 20.98% of the variance in inpatient palliative care phase costs using trimmed data. There are 22 classes in the ambulatory palliative care branch that explains 17.14% variation in ambulatory phase cost using trimmed data. The term 'subacute' is used in Australia to describe health care in which the goal--a change in functional status or improvement in quality of life--is a better predictor of the need for, and the cost of, care than the patient's underlying diagnosis. The results suggest that phase of care (stage of illness) is the best predictor of the cost of Australian palliative care. Other predictors of cost are functional status and age. In the ambulatory setting, symptom severity and the model of palliative care are also predictive of cost. These variables are used in the AN-SNAP Version 1 classification to create 33 palliative care classes. The classification has clinical meaning but the overall statistical performance is only moderate. The structure of the classification allows for it to be improved over time as models of palliative care service delivery develop.

Palliative care in Thailand.

PubMed

Krongyuth, Panit; Campbell, Cathy L; Silpasuwan, Pimpan

2014-12-01

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues.

"What is Palliative Care?"

PubMed

Kozlov, Elissa; Carpenter, Brian D

2017-04-01

Americans rely on the Internet for health information, and people are likely to turn to online resources to learn about palliative care as well. The purpose of this study was to analyze online palliative care information pages to evaluate the breadth of their content. We also compared how frequently basic facts about palliative care appeared on the Web pages to expert rankings of the importance of those facts to understanding palliative care. Twenty-six pages were identified. Two researchers independently coded each page for content. Palliative care professionals (n = 20) rated the importance of content domains for comparison with content frequency in the Web pages. We identified 22 recurring broad concepts about palliative care. Each information page included, on average, 9.2 of these broad concepts (standard deviation [SD] = 3.36, range = 5-15). Similarly, each broad concept was present in an average of 45% of the Web pages (SD = 30.4%, range = 8%-96%). Significant discrepancies emerged between expert ratings of the importance of the broad concepts and the frequency of their appearance in the Web pages ( r τ = .25, P > .05). This study demonstrates that palliative care information pages available online vary considerably in their content coverage. Furthermore, information that palliative care professionals rate as important for consumers to know is not always included in Web pages. We developed guidelines for information pages for the purpose of educating consumers in a consistent way about palliative care.

European Association for Palliative Care: Forging a Vision of Excellence in Palliative Care in Central and Eastern European and Former Soviet Union Countries.

PubMed

Radbruch, Lukas; Ling, Julie; Hegedus, Katalin; Larkin, Philip

2018-02-01

The European Association for Palliative Care (EAPC) represents many thousands of health care workers and volunteers working in or with an interest in palliative care. In 2016, the EAPC has individual members from 48 nations across the world, and collective members from 57 national palliative care associations in 32 European countries. Throughout its history, the EAPC has produced guidance on a range of palliative care issues. The biennial congresses and research congresses and the comprehensive Web site (www.eapcnet.eu) are renowned and well utilized platforms for dissemination and exchange of palliative care information. The EAPC has also published a newsletter specifically for Eastern European and Central Asian countries that has been available in both English and Russian from 2005 to 2012. In addition, for a period of time, a Russian Web site (www.eapcspeaksrussian.eu) was also available. A survey of palliative care in Central and Eastern European nations sponsored by Open Society Foundation's International Palliative Care Initiative found that in most countries, the national language is preferred rather than using English or Russian for the provision of information. Accordingly, the EAPC Web site provides translations of white papers, position papers, and blog posts in a number of languages. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

The Palliative Care Journey in Kenya and Uganda.

PubMed

Kamonyo, Emmanuel S

2018-02-01

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems. This update is aimed at examining palliative care development/achievements and challenges in Kenya and Uganda and the role of various actors in palliative care establishment in the region. It assesses the policy environment, progress in education, access to essential medicines, palliative care implementation efforts, and legal and human rights work. East African nations have huge disease burdens, both communicable and noncommunicable. HIV and cancer are the major causes of mortality in Kenya and Uganda and put huge demands on the health care system and on the country's economies. All these conditions will require palliative care services as the disease burden increases. Unfortunately, for many African countries, accessing palliative care services, including access to pain relief, remains very limited resulting in serious suffering for patients and their families. The interventions in Kenya and Uganda help palliative care organizations engage with their respective governments to ensure that the social and legal barriers impeding access to palliative care services are removed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Bioethics in end-of-life decisions in neonatology: Unresolved issues].

PubMed

Arnaez, Juan; Tejedor, Juan Carlos; Caserío, Sonia; Montes, María Teresa; Moral, María Teresa; González de Dios, Javier; García-Alix, Alfredo

2017-12-01

This document is the result of previous work carried out by different expert groups and submitted to multidisciplinary debate at a Conference about controversial, deficient, or new aspects in the field of neonatal palliative care, such as: 1) the deliberative decision-making process, 2) hospital and domiciliary palliative care, 3) donation after controlled cardiac death, and 4) moral stress in professionals. The most relevant conclusions were: the need to instruct professionals in bioethics and in the deliberative method to facilitate thorough and reasonable decision-making; the lack of development in the field of perinatal palliative care and domiciliary palliative care in hospitals that attend newborns; the need to provide neonatal units with resources that help train professionals in communication skills and in the management of moral distress, as well as delineate operational procedure and guidelines for neonatal organ donation. Copyright © 2017 Asociación Española de Pediatría. Publicado por Elsevier España, S.L.U. All rights reserved.

Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care

PubMed Central

Downing, J; Marston, J; Muckaden, MA; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P

2014-01-01

The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children’s palliative care. PMID:24761156

Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer.

PubMed

Rassouli, Maryam; Sajjadi, Moosa

2016-04-01

Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.

A comprehensive palliative care program at a tertiary cancer center in Jordan.

PubMed

Shamieh, Omar; Hui, David

2015-03-01

The palliative care program in King Hussein Cancer Center (KHCC) is growing rapidly to serve the needs of patients with cancer and their families. To describe the KHCC palliative care program and its integration into the oncology care. Narrative review of our palliative care program. Patients with cancer at KHCC have access to an interprofessional palliative care at different settings. In 2012, the inpatient team saw 400 consultations and 979 referrals and admissions. The outpatient clinic had a total of 1133 patient visits. The home care program provided a total of 1501 visits. Our program is a regional center for education and training and actively conducts research. Our palliative care program may be a model for successful delivery of comprehensive cancer care in the Middle East. © The Author(s) 2013.

Wiisokotaatiwin: development and evaluation of a community-based palliative care program in Naotkamegwanning First Nation.

PubMed

Nadin, Shevaun; Crow, Maxine; Prince, Holly; Kelley, Mary Lou

2018-04-01

Approximately 474 000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily in rural and remote areas. Common rural health challenges, including for palliative care, involve quality and access. The need for culturally relevant palliative care programs in First Nations communities is urgent because the population is aging with a high burden of chronic and terminal disease. Because local palliative care is lacking, most First Nations people now leave their culture, family and community to receive care in distant hospitals or long-term care homes. Due to jurisdictional issues, a policy gap exists where neither federal nor provincial governments takes responsibility for funding palliative care in First Nations communities. Further, no Canadian program models existed for how different levels of government can collaborate to fund and deliver palliative care in First Nations communities. This article describes an innovative, community-based palliative care program (Wiisokotaatiwin) developed in rural Naotkamegwanning, and presents the results of a process evaluation of its pilot implementation. The evaluation aimed to (i) document the program's pilot implementation, (ii) assess progress toward intended program outcomes and (iii) assess the perceived value of the program. The Wiisokotaatiwin Program was developed and implemented over 5 years using participatory action research (http://www.eolfn.lakeheadu.ca). A mixed-method evaluation approach was adopted. Descriptive data were extracted from program documents (eg client registration forms). Client tracking forms documented service provision data for a 4-month sample period. Quantitative and qualitative data were collected through client and family member questionnaires (n=7) and healthcare provider questionnaires (n=22). A focus group was conducted with the program leadership team responsible for program development. Quantitative data were summarized using descriptive statistics. An inductive approach was used to identify themes in the qualitative data related to the evaluation questions. The findings demonstrated the program was implemented as intended, and that there was a need for the program, with six clients on the 10-month pilot. The findings also indicated achievement of program-level outcomes and progress toward system-level outcomes. Clients/families and healthcare providers were satisfied with the program and perceived it to be meeting its objectives. The program model was also perceived to be transferrable to other First Nations communities. The results demonstrate how a rural First Nations community can build capacity and develop a palliative care program tailored to their unique culture and context that builds upon and is integrated into existing services. The Wiisokotaatiwin Program allowed community members to receive their palliative care at home, improved client experience and enhanced service integration. This article provides a First Nations specific model for a palliative care program that overcomes jurisdictional issues at the local level, and a methodology for developing and evaluating community-based palliative care programs in rural First Nations communities. The article demonstrates how local, federal and provincial healthcare providers and organizations collaborated to build capacity, fund and deliver community-based palliative care. The described process of developing the program has applicability in other First Nations (Indigenous) communities and for healthcare decisionmakers.

Poverty Reduction in India through Palliative Care: A Pilot Project.

PubMed

Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju

2017-01-01

EMMS International and Emmanuel Hospital Association (EHA) implemented a pilot project, poverty reduction in India through palliative care (PRIPCare). A total of 129 interviews with patients and family enrolled in palliative care at three EHA hospitals (in Fatehpur, Lalitpur and Utraula) and staff discussions established that 66% of palliative care patients had lost livelihoods due to illness, 26% of patients' families had members who had lost livelihoods due to the illness, 98% of enrolled households had debts, 59% had loans for which they had sold assets, 69% of households took out debt after their family member fell ill, many patients do not know about government benefits and lack necessary documents, many village headmen require bribes to give people access to benefits, and many bereaved women and children lose everything. Palliative care enabled 85% of patients and families to spend less on medicines, 31% of patients received free medicines, all patients reduced use of out-patient departments (OPDs), 20% reduced use of inpatient departments (IPDs), and therefore spent less on travel, 8% of patients had started earning again due to improved health, members of 10% of families started earning again, and one hospital educated 171 village headmen and increased by 5% the number of patients and their families receiving government benefits. If only 0.7% of needy adults are receiving palliative care, these benefits could be delivered to 143 times more families, targeted effectively at poverty reduction. Palliative care has great scope to reduce that most desperate poverty in India caused by chronic illness. This article concerns a study by the UK NGO EMMS International and Indian NGO EHA, to assess whether palliative care reduces household poverty. EHA staff had noticed that many patients spend a lot on ineffective treatment before joining palliative care, many families do not know their entitlement to government healthcare subsidies or government pensions, and many bereaved widows and children are disinherited. Convinced that palliative care can address these, EMMS and EHA implemented PRIPCare - a pilot project. EHA began training staff for rural palliative care in north India in 2009, and started its first palliative care service at Harriet Benson Memorial Hospital, Lalitpur, Uttar Pradesh, in 2010, with home-based care backed by hospital out- and in-patient care. With EMMS support since 2012, EHA's palliative care service functions in eight hospitals in six states and Delhi. EMMS International provided the concept, commissioned the study and reviewed the report. EHA hired and guided a consultant, who piloted a questionnaire in EHA's Delhi Shalom Centre, and conducted 129 in-depth, one-to-one interviews in July and August 2015 with patients or close family members enrolled in the palliative care of three EHA rural hospitals, in Fatehpur, Lalitpur and Utraula. This represents 83% of patients in these hospitals, which in July 2015 was 79 patients in Lalitpur, 39 in Utraula, and 38 in Fatehpur. The questionnaire concerned illness, cost of treatment, use of government benefits, and family economic status. The consultant held focus group discussions with palliative care staff in these three hospitals. An intern in EHA's Shalom Centre in Delhi entered data into Excel. The consultant analysed it using Excel. Poverty of palliative care patients 18% of households enrolled for palliative care earn

Palliative Care Training in Cardiology Fellowship: A National Survey of the Fellows.

PubMed

Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M

2018-02-01

To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.

A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer.

PubMed

Weaver, Meaghann S; Rosenberg, Abby R; Tager, Julia; Wichman, Christopher S; Wiener, Lori

2018-04-01

Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. A total of 142 surveys were completed with representation from 18 countries and 39 states. Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

Increased access to palliative care and hospice services: opportunities to improve value in health care.

PubMed

Meier, Diane E

2011-09-01

A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. © 2011 Milbank Memorial Fund. Published by Wiley Periodicals Inc.

The National Tumor Association Foundation (ANT): A 30 year old model of home palliative care

PubMed Central

2010-01-01

Background Models of palliative care delivery develop within a social, cultural, and political context. This paper describes the 30-year history of the National Tumor Association (ANT), a palliative care organization founded in the Italian province of Bologna, focusing on this model of home care for palliative cancer patients and on its evaluation. Methods Data were collected from the 1986-2008 ANT archives and documents from the Emilia-Romagna Region Health Department, Italy. Outcomes of interest were changed in: number of patients served, performance status at admission (Karnofsky Performance Status score [KPS]), length of participation in the program (days of care provided), place of death (home vs. hospital/hospice), and satisfaction with care. Statistical methods included linear and quadratic regressions. A linear and a quadratic regressions were generated; the independent variable was the year, while the dependent one was the number of patients from 1986 to 2008. Two linear regressions were generated for patients died at home and in the hospital, respectively. For each regression, the R square, the unstandardized and standardized coefficients and related P-values were estimated. Results The number of patients served by ANT has increased continuously from 131 (1986) to a cumulative total of 69,336 patients (2008), at a steady rate of approximately 121 additional patients per year and with no significant gender difference. The annual number of home visits increased from 6,357 (1985) to 904,782 (2008). More ANT patients died at home than in hospice or hospital; this proportion increased from 60% (1987) to 80% (2007). The rate of growth in the number of patients dying in hospital/hospice was approximately 40 patients/year (p < 0.01), vs. approximately 177 patients/year for patients who died at home. The percentage of patients with KPS < 40 at admission decreased from 70% (2003) to 30% (2008); the percentage of patients with KPS > 40 increased. Mean days of care for patients with KPS > 40 exceeded mean days for patients with KPS < 40 (p < 0.001). Patients and caregivers reported high satisfaction with care in each year of assessment; in 2008, among 187 interviewed caregivers, 95% judged the quality of doctors' assistance, and 91% judged the quality of nurses' assistance, to be "optimal." Conclusions The ANT home care model of palliative care delivery has been well-received, with progressively growing numbers of patients served. It has resulted in a greater proportion of home deaths and in patients' accessing palliative care at an earlier point in the disease trajectory. Changes in ANT chronicle palliative care trends in general. PMID:20529310

Moving towards an enhanced community palliative support service (EnComPaSS): protocol for a mixed method study.

PubMed

Arris, Steven M; Fitzsimmons, Deborah A; Mawson, Susan

2015-04-30

The challenge of an ageing population and consequential increase of long term conditions means that the number of people requiring palliative care services is set to increase. One UK hospice is introducing new information and communication technologies to support the redesign of their community services; improve experiences of existing patients; and allow efficient and effective provision of their service to more people. Community Palliative Care Nurses employed by the hospice will be equipped with a mobile platform to improve communication, enable accurate and efficient collection of clinical data at the bedside, and provide access to clinical records at the point of care through an online digital nursing dashboard. It is believed that this will ensure safer clinical interventions, enable delegated specialist care deployment, support the clinical audit of patient care and improve patient safety and patient/carer experience. Despite current attempts to evaluate the implementation of such technology into end of life care pathways, there is still limited evidence supporting the notion that this can be sustained within services and implemented to scale. This study presents an opportunity to carry out a longitudinal evaluation of the implementation of innovative technology to provide evidence for designing more efficient and effective community palliative care services. A mixed methods approach will be used to understand a wide range of organisational, economic, and patient-level factors. The first stage of the project will involve the development of an organisational model incorporating proposed changes resulting from the introduction of new novel mobile technologies. This model will guide stage two, which will consist of gathering and analysing primary evidence. Data will be collected using interviews, focus groups, observation, routinely collected data and documents. The implementation of this new approach to community-based palliative care delivery will require significant changes to established working patterns. This new service delivery model is being developed by the Hospice in collaboration with a team of international academic, industry, and clinical commissioning service improvement specialists. The findings from this initial evaluation will provide valuable baseline evidence regarding the delivery of palliative and end-of-life care services.

The net effect: spanning diseases, crossing borders—highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care

PubMed Central

Downing, J; Namisango, E; Kiyange, F; Luyirika, E; Gwyther, L; Enarson, S; Kampi, J; Sithole, Z; Kemigisha-Ssali, E; Masclee, M; Mukasa, I

2013-01-01

The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care. PMID:24222787

76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-16

... Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire... Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source... Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source...

An exploration of self-management support in the context of palliative nursing: a modified concept analysis

PubMed Central

2014-01-01

Background The role of self-management is often ambiguous, yet, it is an important area in clinical practice for palliative nurses. A clear conceptual understanding, however, of what it represents is lacking. Method This paper reports an analysis of the concept of self-management support in palliative nursing. Avant and Walker’s method was used to guide this concept analysis. A search of electronic databases (1990–2013), use of internet search engines and supplementary hand searching produced an international data set of reviews, empirical research, editorials, protocols and guidelines. Results Based on the analysis self-management support in palliative nursing has been defined as assessing, planning, and implementing appropriate care to enable the patient to live until they die and supporting the patient to be given the means to master or deal with their illness or their effects of their illness themselves. Conclusions Clarity with the concept of self-management support and palliative nursing could enable nurses to provide more patient and family centred care to people facing life threatening illnesses. PMID:25120381

Early Intervention With Transplantation Recipients to Improve Access to and Knowledge of Palliative Care.

PubMed

Harden, Karen L

2016-08-01

The literature continues to support that patients undergoing hematopoietic stem cell transplantation (HSCT) receive early consultation with palliative care specialists. Nurses can be leaders in this initiative. This quality improvement project was conducted to determine whether patients undergoing HSCT, who were provided an early consultation with palliative care, would report increased knowledge and increased ability to access palliative services. Patients completed a postintervention questionnaire in which the majority of patients reported that they had increased knowledge about palliative care and learned how to access their services. Patient comments were positive about the successful intervention of early palliative care. The palliative care team, however, revealed a different view of the situation, showing that patients were often overwhelmed, anxious, and sometimes did not remember the content of their meetings.

Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU).

PubMed

Nelson, Judith E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret L; Cortez, Therese B; Curtis, J Randall; Lustbader, Dana R; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weissman, David E

2010-09-01

To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. We searched the MEDLINE database from inception to April 2010 for all English language articles using the terms "intensive care," "critical care," or "ICU" and "palliative care"; we also hand-searched reference lists and author files. Based on review and synthesis of these data and the experiences of our interdisciplinary expert Advisory Board, we prepared this consensus report. We critically reviewed the existing data with a focus on models that have been used to structure clinical initiatives to enhance palliative care for critically ill patients in intensive care units and their families. There are two main models for intensive care unit-palliative care integration: 1) the "consultative model," which focuses on increasing the involvement and effectiveness of palliative care consultants in the care of intensive care unit patients and their families, particularly those patients identified as at highest risk for poor outcomes; and 2) the "integrative model," which seeks to embed palliative care principles and interventions into daily practice by the intensive care unit team for all patients and families facing critical illness. These models are not mutually exclusive but rather represent the ends of a spectrum of approaches. Choosing an overall approach from among these models should be one of the earliest steps in planning an intensive care unit-palliative care initiative. This process entails a careful and realistic assessment of available resources, attitudes of key stakeholders, structural aspects of intensive care unit care, and patterns of local practice in the intensive care unit and hospital. A well-structured intensive care unit-palliative care initiative can provide important benefits for patients, families, and providers.

Branding Palliative Care Units by Avoiding the Terms “Palliative” and “Hospice”

PubMed Central

Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai

2017-01-01

The term “palliative care” has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term “supportive care” instead of “palliative care” in naming palliative care units has been proposed in several studies. In Taiwan, terms other than “palliative” and “hospice” are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms “palliative” and “hospice” in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms “palliative” and “hospice” in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term “palliative,” while 25.2% (n = 14) included the term “hospice.” Religiously affiliated hospitals were less likely to use the terms “palliative” and “hospice” (χ2 = 11.461, P = .001). There was also a lower prevalence of use of the terms “palliative” and “hospice” for naming palliative care units in private hospitals than in public hospitals (χ2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms “palliative” and “hospice” in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon. PMID:28140730

Core attitudes of professionals in palliative care: a qualitative study.

PubMed

Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde

2009-08-01

Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.

Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer.

PubMed

Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A

2016-10-01

Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P < 0.001) and 11 percentage points higher (P < 0.001) within the information and care planning domain compared with those without a consult. Early palliative care specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.

Effects of online palliative care training on knowledge, attitude and satisfaction of primary care physicians.

PubMed

Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix

2011-05-23

The Spanish Palliative Care Strategy recommends an intermediate level of training for primary care physicians in order to provide them with knowledge and skills. Most of the training involves face-to-face courses but increasing pressures on physicians have resulted in fewer opportunities for provision of and attendance to this type of training. The effectiveness of on-line continuing medical education in terms of its impact on clinical practice has been scarcely studied. Its effect in relation to palliative care for primary care physicians is currently unknown, in terms of improvement in patient's quality of life and main caregiver's satisfaction. There is uncertainty too in terms of any potential benefits of asynchronous communication and interaction among on-line education participants, as well as of the effect of the learning process.The authors have developed an on-line educational model for palliative care which has been applied to primary care physicians in order to measure its effectiveness regarding knowledge, attitude towards palliative care, and physician's satisfaction in comparison with a control group.The effectiveness evaluation at 18 months and the impact on the quality of life of patients managed by the physicians, and the main caregiver's satisfaction will be addressed in a different paper. Randomized controlled educational trial to compared, on a first stage, the knowledge and attitude of primary care physicians regarding palliative care for advanced cancer patients, as well as satisfaction in those who followed an on-line palliative care training program with tutorship, using a Moodle Platform vs. traditional education. 169 physicians were included, 85 in the intervention group and 84 in the control group, of which five were excluded. Finally 82 participants per group were analyzed. There were significant differences in favor of the intervention group, in terms of knowledge (mean 4.6; CI 95%: 2.8 to 6.5 (p = 0.0001), scale range 0-33), confidence in symptom management (p = 0.02) and confidence in terms of communication (p = 0.038). Useful aspects were pointed out, as well as others to be improved in future applications. The satisfaction of the intervention group was high. The results of this study show that there was a significant increase of knowledge of 14%-20% and a significant increase in the perception of confidence in symptom management and communication in the intervention group in comparison with the control group that received traditional methods of education in palliative care or no educational activity at all. The overall satisfaction with the intervention was good-very good for most participants.This on-line educational model seems a useful tool for palliative care training in primary care physicians who have a high opinion about the integration of palliative care within primary care. The results of this study support the suggestion that learning effectiveness should be currently investigated comparing different Internet interventions, instead of Internet vs. no intervention.

Integrating palliative care with usual care of diabetic foot wounds.

PubMed

Dunning, Trisha

2016-01-01

Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction. Copyright © 2016 John Wiley & Sons, Ltd.

Effectiveness of the ACA (Availability, Current issues and Anticipation) training programme on GP-patient communication in palliative care; a controlled trial

PubMed Central

2013-01-01

Background Communicating effectively with palliative care patients has been acknowledged to be somewhat difficult, but little is known about the effect that training general practitioners (GPs) in specific elements of communication in palliative care might have. We hypothesized that GPs exposed to a new training programme in GP-patient communication in palliative care focusing on availability of the GP for the patient, current issues the GP should discuss with the patient and anticipation by the GP of various scenarios (ACA), would discuss more issues and become more skilled in their communication with palliative care patients. Methods In this controlled trial among GPs who attended a two-year Palliative Care Peer Group Training Course in the Netherlands only intervention GPs received the ACA training programme. To evaluate the effect of the programme a content analysis (Roter Interaction Analysis System) was performed of one videotaped 15-minute consultation of each GP with a simulated palliative care patient conducted at baseline, and one at 12 months follow-up. Both how the GP communicated with the patient (‘availability’) and the number of current and anticipated issues the GP discussed with the patient were measured quantitatively. We used linear mixed models and logistic regression models to evaluate between-group differences over time. Results Sixty-two GPs were assigned to the intervention and 64 to the control group. We found no effect of the ACA training programme on how the GPs communicated with the patient or on the number of issues discussed by GPs with the patient. The total number of issues discussed by the GPs was eight out of 13 before and after the training in both groups. Conclusion The ACA training programme did not influence how the GPs communicated with the simulated palliative care patient or the number of issues discussed by the GPs in this trial. Further research should evaluate whether this training programme is effective for GPs who do not have a special interest in palliative care and whether studies using outcomes at patient level can provide more insight into the effectiveness of the ACA training programme. Trial registration Current Controlled Trials ISRCTN56722368 PMID:23819723

Identified Palliative Care Approach Needs with SPICT in Family Practice: A Preliminary Observational Study.

PubMed

Hamano, Jun; Oishi, Ai; Kizawa, Yoshiyuki

2018-02-09

Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose. To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan. Single-center cross-sectional study. We enrolled all patients ≥65 years of age who visited the chief researcher's outpatient clinic in October 2016. We used Japanese version of SPICT (SPICT-J) to identify patients who need palliative care approach. We assessed patients' backgrounds and whether they had undergone advance care planning with their family physicians. This study included 87 patients (61 females) with a mean age of 79.0 ± 7.4 years. Eight patients (9.2%) were identified as needing palliative care approach. The mean age of patients who needed this approach was 82.3 ± 8.3 years and main underlying conditions were heart/vascular disease (37.5%), dementia/frailty (25.0%), and respiratory disease (12.5%). Only two of eight patients identified as needing palliative care approach had discussed advance care planning with their family physicians. In family practice, 9.2% of outpatients ≥65 years of age were identified as needing palliative care approach. Family physicians should carefully evaluate whether outpatients need palliative care approach.

A Novel Use of Peer Coaching to Teach Primary Palliative Care Skills: Coaching Consultation.

PubMed

Jacobsen, Juliet; Alexander Cole, Corinne; Daubman, Bethany-Rose; Banerji, Debjani; Greer, Joseph A; O'Brien, Karen; Doyle, Kathleen; Jackson, Vicki A

2017-10-01

We aim to address palliative care workforce shortages by teaching clinicians how to provide primary palliative care through peer coaching. We offered peer coaching to internal medicine residents and hospitalists (attendings, nurse practioners, and physician assistants). An audit of peer coaching encounters and coachee feedback to better understand the applicability of peer coaching in the inpatient setting to teach primary palliative care. Residents and hospitalist attendings participated in peer coaching for a broad range of palliative care-related questions about pain and symptom management (44%), communication (34%), and hospice (22%). Clinicians billed for 68% of encounters using a time-based billing model. Content analysis of coachee feedback identified that the most useful elements of coaching are easy access to expertise, tailored teaching, and being in partnership. Peer coaching can be provided in the inpatient setting to teach primary palliative care and potentially extend the palliative care work force. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Integration of Latino/a cultural values into palliative health care: a culture centered model.

PubMed

Adames, Hector Y; Chavez-Dueñas, Nayeli Y; Fuentes, Milton A; Salas, Silvia P; Perez-Chavez, Jessica G

2014-04-01

Culture helps us grapple with, understand, and navigate the dying process. Although often overlooked, cultural values play a critical and influential role in palliative care. The purpose of the present study was two-fold: one, to review whether Latino/a cultural values have been integrated into the palliative care literature for Latinos/as; two, identify publications that provide recommendations on how palliative care providers can integrate Latino/a cultural values into the end-of-life care. A comprehensive systematic review on the area of Latino/a cultural values in palliative care was conducted via an electronic literature search of publications between 1930-2013. Five articles were identified for reviewing, discussing, or mentioning Latino/a cultural values and palliative care. Only one article specifically addressed Latino/a cultural values in palliative care. The four remaining articles discuss or mention cultural values; however, the cultural values were not the main focus of each article's thesis. The results of the current study highlight the lack of literature specifically addressing the importance of integrating Latino/a cultural values into the delivery of palliative care. As a result, this article introduces the Culture-Centered Palliative Care Model (CCPC). The article defines five key traditional Latino/a cultural values (i.e., familismo, personalismo, respeto, confianza, and dignidad), discusses the influence of each value on palliative health care, and ends with practical recommendations for service providers. Special attention is given to the stages of acculturation and ethnic identity.

Developing a Palliative Care Competency Framework for Health Professionals and Volunteers: The Nova Scotian Experience.

PubMed

McCallum, Meg; Carver, Janet; Dupere, David; Ganong, Sharon; Henderson, J David; McKim, Ann; McNeil-Campbell, Lisa; Richardson, Holly; Simpson, Judy; Tschupruk, Cheryl; Jewers, Heather

2018-05-15

In 2014, Nova Scotia released a provincial palliative care strategy and implementation working groups were established. The Capacity Building and Practice Change Working Group, comprised of health professionals, public advisors, academics, educators, and a volunteer supervisor, was asked to select palliative care education programs for health professionals and volunteers. The first step in achieving this mandate was to establish competencies for health professionals and volunteers caring for patients with life-limiting illness and their families and those specializing in palliative care. In 2015, a literature search for palliative care competencies and an environmental scan of related education programs were conducted. The Irish Palliative Care Competence Framework serves as the foundation of the Nova Scotia Palliative Care Competency Framework. Additional disciplines and competencies were added and any competencies not specific to palliative care were removed. To highlight interprofessional practice, the framework illustrates shared and discipline-specific competencies. Stakeholders were asked to validate the framework and map the competencies to educational programs. Numerous rounds of review refined the framework. The framework includes competencies for 22 disciplines, 9 nursing specialties, and 4 physician specialties. The framework, released in 2017, and the selection and implementation of education programs were a significant undertaking. The framework will support the implementation of the Nova Scotia Integrated Palliative Care Strategy, enhance the interprofessional nature of palliative care, and guide the further implementation of education programs. Other jurisdictions have expressed considerable interest in the framework.

Proposal for Development of EBM-CDSS (Evidence-Based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients

DTIC Science & Technology

2013-10-01

monthly basis. The similar process is followed at TGH, where the research team mostly works with palliative care service. Through this process, the... Palliative Care at TGH. • We continue to regularly conduct meetings with TGH palliative care team and present the ongoing experience of our research study...to the TGH palliative care team. These meeting established a fruitful and trustful and working relationship with TGH palliative care team, which is

Commissioning of specialist palliative care services in England.

PubMed

Lancaster, Harriet; Finlay, Ilora; Downman, Maxwell; Dumas, James

2018-03-01

Some failures in end-of-life care have been attributed to inconsistent provision of palliative care across England. We aimed to explore the variation in commissioning of services by Clinical Commissioning Groups (CCGs) using a data collection exercise. We sent a Freedom of Information request in the form of an open questionnaire to all 209 CCGs in England to assess their commissioning of palliative and end-of-life care services, mainly focused on the provision of specialist palliative care services. 29 CCGs provided information about the number of patients with some form of palliative care needs in their population. For specialist palliative care services, CCGs allocated budgets ranging from £51.83 to £2329.19 per patient per annum. 163 CCGs (77.90%) currently commission 7-day admission to their specialist palliative care beds. 82.84% of CCGs commission 7-day specialist palliative care services in patients' own homes and out-of-hours services rely heavily on hospice provision. 64 CCGs (31.37%) commission pain control teams, the majority of whom only operate in regular working hours. 68.14% of CCGs reported commissioning palliative care education of any sort for healthcare professionals and 44.85% of CCGs had no plans to update or review their palliative care services. The most important finding from this exercise is that the information CCGs hold about their population and services is not standardised. However, information based on data that are more objective, for example, population and total budget for palliative care, demonstrate wide variations in commissioning. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Outcome evaluation of the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education: nationwide physician education project for primary palliative care in Japan.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Ohde, Sachiko; Tetsumi, Sato; Miyashita, Mitsunori

2015-01-01

Palliative care is an essential part of medicine, but most physicians have had no formal opportunity to acquire basic skills in palliative care. In Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched to provide formal primary palliative care education for all physicians engaged in cancer care. This study sought to determine whether PEACE could improve physicians' knowledge of, practices in, and difficulties with palliative care. In 2011, we conducted questionnaire-based surveys before, just after, and 2 months after completion of the PEACE program in physicians participating in the program at each of 15 designated cancer hospitals in Japan. Knowledge was measured using the palliative care knowledge questionnaire for PEACE (PEACE-Q). Practices and difficulties were evaluated using the Palliative Care self-reported Practice Scale (PCPS) and the Palliative Care Difficulties Scale (PCDS), respectively. Among 223 physicians participating in the program, 85 (38%) answered the follow-up survey. Significant improvements were noted on the PEACE-Q compared with baseline immediately after completion of the program, and this progress was maintained at 2 months (21.7 ± 5.56 versus 29.5 ± 2.10 versus 28.7 ± 3.28, respectively; p < 0.0001). Similarly, significant improvements were noted for total scores on both the PCPS and the PCDS at 2 months after completion of the program (62.1 ± 13.9 versus 69.6 ± 9.94 [p < 0.0001] for the PCPS; 44.4 ± 9.96 versus 39.4 ± 10.7 [p < 0.0001] for the PCDS). The PEACE education program improved physicians' knowledge of, practices in, and difficulties with palliative care.

Supportive palliative care should be integrated into routine care for paediatric patients with life-limiting kidney disease.

PubMed

Thumfart, Julia; Reindl, Tobias; Rheinlaender, Cornelia; Müller, Dominik

2018-03-01

Paediatric palliative care is no longer restricted to patients with cancer and has been extended to patients with other chronic conditions, such as cystic fibrosis or neuromuscular disorders. This review focused on the current state of palliative care for children and adolescents with chronic kidney disease (CKD). We assessed the literature on CKD published up to August 2017. All the papers, except one from 1996, were published this century. This review discusses the role that palliative care plays in the process of decision-making and explores the possibilities of implementing palliative care into the routine therapy of affected patients and providing support for their families. Offering early palliative care as an integral part of the kidney, supportive care provided by the nephrology care team is both necessary and feasible for patients with CKD. As a minimum, a specialised palliative care team should be involved in patients with multiple comorbidities, in conservative treatment scenarios and in acute life-threatening complications. Further studies and guidelines are required to improve the care of patients with CKD and their families. Supportive palliative care should be implemented into the routine care of patients with life-limiting kidney disease. ©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

Palliative care is not yet a well-defined product within the Dutch healthcare insurance system.

PubMed

Jansen, Wim J J; Vissers, Kris C P; Zuurmond, Wouter W A; van Montfort, Guus P W P; Rhebergen, Andre; Loer, Stephan A

2009-07-01

In the Netherlands, the quality and availability of palliative care has improved markedly within the last decade. However, many open questions remain concerning the position of palliative care as an insurable product on the Dutch healthcare market. Therefore, we analysed the policies of all private Dutch healthcare insurance companies as well as the public insurance policy for extraordinary medical costs. We studied how and which parts of palliative care were reimbursed in 2007. We observed a huge variability in costs and reimbursement regulations reflecting a rapid turnover of products for palliative care due to various new developments on this specific field of medical care. We conclude that a better definition of the product 'palliative care' is necessary for patients, health care providers and insurance companies.

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

PubMed

Cain, Cindy L; Surbone, Antonella; Elk, Ronit; Kagawa-Singer, Marjorie

2018-05-01

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care.

PubMed

Aparicio, María; Centeno, Carlos; Carrasco, José Miguel; Barbosa, Antonio; Arantzamendi, María

2017-09-06

Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service. Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.

Among neighbors: an ethnographic account of responsibilities in rural palliative care.

PubMed

Pesut, Barbara; Robinson, Carole A; Bottorff, Joan L

2014-04-01

Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.

A qualitative evaluation of the impact of a palliative care course on preregistration nursing students' practice in Cameroon.

PubMed

Bassah, Nahyeni; Cox, Karen; Seymour, Jane

2016-03-31

Current evidence suggests that palliative care education can improve preregistration nursing students' competencies in palliative care. However, it is not known whether these competencies are translated into students' practice in the care of patients who are approaching the end of life. This paper seeks to contribute to the palliative care evidence base by examining how nursing students in receipt of education report transfer of learning to practice, and what the barriers and facilitators may be, in a resource-poor country. We utilised focus groups and individual critical incident interviews to explore nursing students' palliative care learning transfer. Three focus groups, consisting of 23 participants and 10 individual critical incident interviews were conducted with preregistration nursing student who had attended a palliative care course in Cameroon and had experience caring for a patient approaching the end of life. Data was analysed thematically, using the framework approach. The results suggest that nursing students in receipt of palliative care education can transfer their learning to practice. Students reported recognizing patients with palliative care needs, providing patients with physical, psychosocial and spiritual support and communicating patient information to the wider care team. They did however perceive some barriers to this transfer which were either related to themselves, qualified nurses, the practice setting or family caregivers and patients. The findings from this study suggest that nursing student in receipt of palliative care education can use their learning in practice to provide care to patients and their families approaching the end of life. Nevertheless, these findings need to be treated with some caution given the self-reported nature of the data. Demonstrating the link between preregistration palliative care education and patient care is vital to ensuring that newly acquired knowledge and skills are translated and embedded into clinical practice. This study also has implications for advocating for palliative care policies and adequately preparing clinical placement sites for students' learning and transfer of learning.

Culturally Relevant Palliative and End-of-Life Care for U.S. Indigenous Populations: An Integrative Review.

PubMed

Isaacson, Mary J; Lynch, Anna R

2018-03-01

American Indians/Alaska Natives (AIs/ANs) have higher rates of chronic illness and lack access to palliative/end-of-life (EOL) care. This integrative review ascertained the state of the science on culturally acceptable palliative/EOL care options for Indigenous persons in the United States. Databases searched: CINAHL, PubMed/MEDLINE, SocINDEX, PsycINFO, PsycARTICLES, ERIC, Health Source: Nursing/Academic Edition, and EBSCO Discovery Service 1880s-Present. Key terms used: palliative care, EOL care, and AI/AN. peer-reviewed articles published in English. Findings/Results: Twenty-nine articles were identified, 17 remained that described culturally specific palliative/EOL care for AIs/ANs. Synthesis revealed four themes: Communication, Cultural Awareness/Sensitivity, Community Guidance for Palliative/EOL Care Programs, Barriers and two subthemes: Trust/Respect and Mistrust. Limitations are lack of research funding, geographic isolation, and stringent government requirements. Palliative/EOL care must draw on a different set of skills that honor care beyond cure provided in a culturally sensitive manner.

How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

PubMed

Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki

2016-07-01

To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities.

PubMed

Kavalieratos, Dio; Gelfman, Laura P; Tycon, Laura E; Riegel, Barbara; Bekelman, David B; Ikejiani, Dara Z; Goldstein, Nathan; Kimmel, Stephen E; Bakitas, Marie A; Arnold, Robert M

2017-10-10

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course. Published by Elsevier Inc.

Evaluation of Hospital-Based Palliative Care Programs.

PubMed

Hall, Karen Lynn; Rafalson, Lisa; Mariano, Kathleen; Michalek, Arthur

2016-02-01

This study evaluated current hospital-based palliative care programs using recommendations from the Center to Advance Palliative Care (CAPC) as a framework. Seven hospitals located in Buffalo, New York were included based on the existence of a hospital-based palliative care program. Data was collected from August through October of 2013 by means of key informant interviews with nine staff members from these hospitals using a guide comprised of questions based on CAPC's recommendations. A gap analysis was conducted to analyze the current state of each hospital's program based upon CAPC's definition of a quality palliative care program. The findings identify challenges facing both existing/evolving palliative care programs, and establish a foundation for strategies to attain best practices not yet implemented. This study affirms the growing availability of palliative care services among these selected hospitals along with opportunities to improve the scope of services in line with national recommendations. © The Author(s) 2014.

The Use of Simulation to Teach Nursing Students and Clinicians Palliative Care and End-of-Life Communication: A Systematic Review.

PubMed

Smith, Madison B; Macieira, Tamara G R; Bumbach, Michael D; Garbutt, Susan J; Citty, Sandra W; Stephen, Anita; Ansell, Margaret; Glover, Toni L; Keenan, Gail

2018-01-01

To present the findings of a systematic review on the use of simulation-based learning experiences (SBLEs) to teach communication skills to nursing students and clinicians who provide palliative and end-of-life care to patients and their families. Palliative care communication skills are fundamental to providing holistic patient care. Since nurses have the greatest amount of direct exposure to patients, building such communication competencies is essential. However, exposure to patients and families receiving palliative and end-of-life care is often limited, resulting in few opportunities to learn these skills in the clinical setting. Simulation-based learning experiences can be used to supplement didactic teaching and clinical experiences to build the requisite communication skills. Searches of CINAHL, MEDLINE, PsychINFO, ERIC, and Web of Science electronic databases and Grey Literature returned 442 unique records. Thirty articles met the established criteria, including the SBLE must contain a nursing role. Simulation-based learning experience are being used to teach palliative and end-of-life communication skills to nursing students and clinicians. Lack of standardization, poor evaluation methods, and limited exposure to the entire interprofessional team makes it difficult to identify and disseminate validated best practices. While the need for further research is acknowledged, we recommend this evidence be augmented by training programs that utilize SBLEs through (1) applying standards, (2) clearly specifying goals and objectives, (3) integrating externally validated scenarios, and (4) employing rigorous evaluation methods and measures that link the SBLE to the training objectives and desired clinician practice behaviors and patient outcomes.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care.

PubMed

Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

PubMed

Ela, Sara; Espinosa, Jose; Martínez-Muñoz, Marisa; Lasmarías, Cristina; Beas, Elba; Mateo-Ortega, Dolors; Novellas, Anna; Gómez-Batiste, Xavier

2014-04-01

The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

Multicentered Study Evaluating Pharmacy Students' Perception of Palliative Care and Clinical Reasoning Using Script Concordance Testing.

PubMed

Atayee, Rabia S; Lockman, Kashelle; Brock, Cara; Abazia, Daniel T; Brooks, Tracy L; Pawasauskas, Jayne; Edmonds, Kyle P; Herndon, Christopher M

2018-01-01

As the role of the pharmacist on the transdisciplinary palliative care team grows, the need for adequate instruction on palliative care and clinical reasoning skills in schools of pharmacy grows accordingly. This study evaluates second- and third-year pharmacy students from 6 accredited schools of pharmacy that participated in surveys before and after the delivery of a didactic palliative care elective. The survey collected student demographics, perceptions of the importance of and student skill level in palliative care topics. The script concordance test (SCT) was used to assess clinical decision-making skills on patient cases. Student scores on the SCT were compared to those of a reference panel of experts. A total of 89 students completed the pre-/postsurveys and were included in data analysis. There was no statistically significant difference in student perceived importance of palliative care skills before and after the elective. Students from all 6 institutions showed significant increase in confidence in their palliative care skills at the end of the course. There was also a significant improvement across all institutions in clinical reasoning skills in most of the SCT questions used to assess these skills. Students choosing an elective in palliative care likely do so because they already have an understanding of the importance of these topics in their future practice settings. Delivery of a palliative care elective in the pharmacy curriculum significantly increases both student confidence in their palliative care skills and their clinical reasoning skills in these areas.

Clinical aspects of palliative care in advanced Parkinson’s disease

PubMed Central

2012-01-01

Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients. PMID:23098090

Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal.

PubMed

Mendes, Joana C C; Justo da Silva, Lincoln

2013-12-01

Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the transition to palliative care in the neonatal intensive care unit, and it was considered very important to raise their awareness and motivation about neonatal palliative care. Our research was based on Catlin and Carter's protocol from 2002 and the main goal was to assess neonatologists' willingness to build a palliative care and end-of-life protocol that could be acceptable nationwide. The survey used the Delphi technique and was developed in 3 rounds. The expert panel was composed of 57 participants who represented 41% of the Portuguese neonatologists. The study was conducted via the Internet, based in a researcher-created private Web site, and e-mail was used for data collection and feedback. Neonatologists agreed on 7 areas: (1) planning (medical education, resources, and local), (2) prenatal palliative care, (3) neonatal palliative care criteria, (4) the parents (presenting neonatal palliative care to parents, including then in the daily care of newborns and in family-centered care), (5) physicians' needs, (6) pain and symptom management, and (7) end-of-life care (withholding/withdrawing ventilation and hydration/nutrition).

Integrating palliative care into comprehensive cancer care.

PubMed

Abrahm, Janet L

2012-10-01

While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care.

Palliative care - managing pain

MedlinePlus

... this page: //medlineplus.gov/ency/patientinstructions/000532.htm Palliative care - managing pain To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

Palliative care for patients with HIV/AIDS admitted to intensive care units

PubMed Central

Souza, Paola Nóbrega; de Miranda, Erique José Peixoto; Cruz, Ronaldo; Forte, Daniel Neves

2016-01-01

Objective To describe the characteristics of patients with HIV/AIDS and to compare the therapeutic interventions and end-of-life care before and after evaluation by the palliative care team. Methods This retrospective cohort study included all patients with HIV/AIDS admitted to the intensive care unit of the Instituto de Infectologia Emílio Ribas who were evaluated by a palliative care team between January 2006 and December 2012. Results Of the 109 patients evaluated, 89% acquired opportunistic infections, 70% had CD4 counts lower than 100 cells/mm3, and only 19% adhered to treatment. The overall mortality rate was 88%. Among patients predicted with a terminally ill (68%), the use of highly active antiretroviral therapy decreased from 50.0% to 23.1% (p = 0.02), the use of antibiotics decreased from 100% to 63.6% (p < 0.001), the use of vasoactive drugs decreased from 62.1% to 37.8% (p = 0.009), the use of renal replacement therapy decreased from 34.8% to 23.0% (p < 0.0001), and the number of blood product transfusions decreased from 74.2% to 19.7% (p < 0.0001). Meetings with the family were held in 48 cases, and 23% of the terminally ill patients were discharged from the intensive care unit. Conclusion Palliative care was required in patients with severe illnesses and high mortality. The number of potentially inappropriate interventions in terminally ill patients monitored by the palliative care team significantly decreased, and 26% of the patients were discharged from the intensive care unit. PMID:27737420

Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

PubMed

Prizer, Lindsay P; Gay, Jennifer L; Perkins, Molly M; Wilson, Mark G; Emerson, Kerstin G; Glass, Anne P; Miyasaki, Janis M

2017-10-01

A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. A cross-sectional survey study of neurologists. A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

Effects of Palliative Care Training Program on Knowledge, Attitudes, Beliefs and Experiences Among Student Physiotherapists: A Preliminary Quasi-experimental Study.

PubMed

Kumar, Senthil P; Jim, Anand; Sisodia, Vaishali

2011-01-01

Physiotherapists play an inherent role in the multidisciplinary palliative care team. Existing knowledge, attitudes, beliefs and experiences influence their team participation in palliative care. The objective of this study was to assess the changes in knowledge, attitudes, beliefs and experiences among student physiotherapists who attended a palliative care training program. Preliminary quasi-experimental study design, conducted at an academic institution. Fifty-two student physiotherapists of either gender (12 male, 40 female) of age (20.51±1.78 years) who attended a palliative care training program which comprised lectures and case examples of six-hours duration participated in this study. The study was performed after getting institutional approval and obtaining participants' written informed consent. The lecture content comprised WHO definition of palliative care, spiritual aspects of life, death and healing, principles, levels and models of palliative care, and role of physiotherapists in a palliative care team. The physical therapy in palliative care-knowledge, attitudes, beliefs and experiences scale (PTiPC-KABE Scale)- modified from palliative care attitudes scale were used for assessing the participants before and after the program. Paired t-test and Wilcoxon signed rank test at 95% confidence interval using SPSS 11.5 for Windows. Statistically significant differences (P<0.05) were noted for all four subscales- knowledge (7.84±4.61 points), attitudes (9.46±8.06 points), beliefs (4.88±3.29 points) and experiences (15.8±11.28 points) out of a total score of 104 points. The focus-group training program produced a significant positive change about palliative care in knowledge, attitudes, beliefs and experiences among student physiotherapists.

What "best practice" could be in Palliative Care: an analysis of statements on practice and ethics expressed by the main Health Organizations

PubMed Central

2010-01-01

Background In palliative care it would be necessary to refer to a model. Nevertheless it seems that there are no official statements which state and describe that model. We carried out an analysis of the statements on practice and ethics of palliative care expressed by the main health organizations to show which dimensions of end-of-life care are taken into consideration. Methods The official documents by the most representative health organisations committed to the definition of policies and guidelines for palliative and end-of-life care had been considered. The documents were analysed through a framework of the components of end-of-life care derived from literature, which was composed of 4 main "areas" and of 12 "sub-areas". Results Overall, 34 organizations were identified, 7 international organisations, and 27 organisations operating on the national level in four different countries (Australia, Canada, UK and United States). Up to 56 documents were selected and analysed. Most of them (38) are position statements. Relevant quotations from the documents were presented by "areas" and "sub-areas". In general, the "sub-areas" of symptoms control as well as those referring to relational and social issues are more widely covered by the documents than the "sub-areas" related to "preparation" and to "existential condition". Indeed, the consistency of end-of-life choices with the patient's wishes, as well as completion and meaningfulness at the end of life is given only a minor relevance. Conclusions An integrated model of the best palliative care practice is generally lacking in the documents. It might be argued that the lack of a fixed and coherent model is due to the relevance of unavoidable context issues in palliative care, such as specific cultural settings, patient-centred variables, and family specificity. The implication is that palliative care staff have continuously to adapt their model of caring to the specific needs and values of each patient, more than applying a fixed, although maybe comprehensive, care model. PMID:20205778

Outpatient Palliative Cardiology Service Embedded Within a Heart Failure Clinic: Experiences With an Emerging Model of Care.

PubMed

Gandesbery, Benjamin; Dobbie, Krista; Gorodeski, Eiran Z

2018-04-01

The role of palliative care consultation in the outpatient treatment of patients with symptomatic heart failure (HF) is poorly studied. In August 2015, we created an outpatient palliative care service embedded within the HF clinic at Cleveland Clinic main campus. To characterize patients cared for by our novel outpatient palliative cardiology service, including their degree of HF, symptoms, comorbidities, topics addressed in clinic, palliative treatments prescribed, advanced directives status, and mortality. We conducted a retrospective chart review of all patients evaluated by this outpatient service. Eighty patients were seen in 229 outpatient encounters. The most commonly reported symptoms were tiredness (74%), pain (64%), dyspnea (57%), drowsiness (45%), anxiety (45%), and depression (43%). The most frequently addressed issues were pain management (55%) and advanced care planning (54%). The most common palliative medications prescribed in palliative care clinic were opiates (48%), laxatives (22%), antineuropathics (22%), and antidepressants (16%). The 1-year survival rate was 70% (CI 65-75%). Embedding palliative medicine services in an HF outpatient clinic is feasible. Patients seen in this setting had an array of quality-of-life limiting symptoms and were medically managed with several interventions familiar to palliative medicine specialists. Outpatients with chronic HF have a significant symptom burden and may benefit from outpatient specialist palliative care.

Palliative care of First Nations people

PubMed Central

Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris

2009-01-01

ABSTRACT OBJECTIVE To understand cross-cultural hospital-based end-of-life care from the perspective of bereaved First Nations family members. DESIGN Phenomenologic approach using qualitative in-depth interviews. SETTING A rural town in northern Ontario with a catchment of 23 000 Ojibway and Cree aboriginal patients. PARTICIPANTS Ten recently bereaved aboriginal family members. METHODS Semi-structured interviews were conducted, audiotaped, and transcribed. Data were analyzed using crystallization and immersion techniques. Triangulation and member-checking methods were used to ensure trustworthiness. MAIN FINDINGS First Nations family members described palliative care as a community and extended family experience. They expressed the need for rooms and services that reflect this, including space to accommodate a larger number of visitors than is usual in Western society. Informants described the importance of communication strategies that involve respectful directness. They acknowledged that all hospital employees had roles in the care of their loved ones. Participants generally described their relatives’ relationships with nurses and the care the nurses provided as positive experiences. CONCLUSION Cross-cultural care at the time of death is always challenging. Service delivery and communication strategies must meet cultural and family needs. Respect, communication, appropriate environments, and caregiving were important to participants for culturally appropriate palliative care. PMID:19366951

Experiences of time: a qualitative inquiry into experiences of time as described by palliative care inpatients.

PubMed

Robertson, Matra

2015-02-01

In palliative care, health professionals provide support and care for patients for the duration of the unknown time toward death. While the experiences of patients diagnosed with a life limiting illness in palliative care have received some scholarly attention, little research has explored these experiences as described by palliative inpatients themselves. The purpose of this article is to explore how patients describe their lived experiences of time while in a palliative inpatient facility. This study used a qualitative phenomenological method and nine inpatients were recruited. They were interviewed utilizing in-depth semi-structured interviews, which were audio taped and transcribed. These interview transcripts of their descriptions were the data sources for this inquiry. Their description is part of a broader phenomenological inquiry on the experience of living with a life limiting illness described by palliative inpatients. Data were analyzed to identify essential themes within and across cases. Three essential themes were revealed: "brief time"; "waiting time," and "transcendental horizon: future time." These themes were not mutually exclusive and participant's experiences of time approaching death were described as a time of living toward death. The findings suggest that patients diagnosed with a life limiting illness have multi-dimensional experiences of time. Understanding the experiences of temporality for patients close to the gravity of death, from the patients' own words, can provide direction for patient informed interventions in clinical practice.

Cultural and religious considerations in pediatric palliative care

PubMed Central

WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA

2012-01-01

Objective A growing multicultural society presents healthcare providers with a difficult task of providing appropriate care for individuals who have different life experiences, beliefs, value systems, religions, languages, and notions of healthcare. This is especially vital when end-of-life care is needed during childhood. There is a dearth of literature addressing cultural considerations in the pediatric palliative care field. As members of a specific culture often do not ascribe to the same religious traditions, the purpose of this article was to explore and review how culture and religion informs and shapes pediatric palliative care. Method Comprehensive literature searches were completed through an online search of nine databases for articles published between 1980 and 2011: PsychINFO, MEDLINE®, Journal of Citation Reports-Science Edition, Embase, Scopus, CINAHL®, Social Sciences Citation Index (SSCI), EBSCO, and Ovid. Key terms included: culture, transcultural, spiritual, international, ethnic, customs or religion AND end-of-life, palliative care, death, dying, cancer, or hospice, and children, pediatrics, or pediatric oncology. Reference lists in the retrieved articles were examined for additional studies that fit the inclusion criteria, and relevant articles were included for review. In addition, web-based searches of specific journals were conducted. These included, but were not limited to: Qualitative Health Research, Psycho-Oncology, Journal of Psychosocial Oncology, Journal of Pediatric Psychology, Journal of Pediatric Health Care, Journal of Pediatric Oncology Nursing, Omega, Social Work in Health Care, and Journal of Palliative Medicine. Results Thirty-seven articles met eligibility criteria. From these, seven distinct themes emerged that have implications for pediatric palliative care. These include the role of culture in decision-making, faith and the involvement of clergy, communication (spoken and unspoken language), communicating to children about death (truth telling), the meaning of pain and suffering, the meaning of death and dying, and location of end-of-life care. Significance of results The review of the literature provides insight into the influence of religion and how culture informs lifestyle and shapes the experiences of illness, pain, and end-of-life care. Recommendations for providing culturally sensitive end-of-life care are offered through the framework outlined in the Initiative for Pediatric Palliative Care Quality Improvement Project of 2002. Cultural traditions are dynamic, never static, and cannot be generalized to all families. Guidelines to aid in approaches to palliative care are provided, and providers are encouraged to define these important differences for each family under their care. PMID:22617619

'Heated political dynamics exist ...': examining the politics of palliative care in rural British Columbia, Canada.

PubMed

Crooks, Valorie A; Castleden, Heather; Hanlon, Neil; Schuurman, Nadine

2011-01-01

Palliative care is delivered by a number of professional groups and informal providers across a range of settings. This arrangement works well in that it maximizes avenues for providing care, but may also bring about complicated 'politics' due to struggles over control and decision-making power. Thirty-one interviews conducted with formal and informal palliative care providers in a rural region of British Columbia, Canada, are drawn upon as a case study. Three types of politics impacting on palliative care provision are identified: inter-community, inter-site, and inter-professional. Three themes crosscut these politics: ownership, entitlement, and administration. The politics revealed by the interviews, and heretofore underexplored in the palliative literature, have implications for the delivery of palliative care. For example, the outcomes of the politics simultaneously facilitate (e.g. by promoting advocacy for local services) and serve as a barrier to (e.g. by privileging certain communities/care sites/provider) palliative care provision.

Advancing palliative care as a human right.

PubMed

Gwyther, Liz; Brennan, Frank; Harding, Richard

2009-11-01

The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as a matter of priority, [these] obligations." This article describes recent advocacy activities and explores practical strategies for the palliative care community to use within a human rights framework to advance palliative care development worldwide.

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation

PubMed Central

Allsop, Matthew J; Kite, Suzanne; McDermott, Sarah; Penn, Naomi; Millares-Martin, Pablo; Bennett, Michael I

2016-01-01

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient’s preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems. PMID:27507636

Association between the Availability of Hospital-Based Palliative Care and Treatment Intensity for Critically Ill Patients.

PubMed

Hua, May; Ma, Xiaoyue; Morrison, R Sean; Li, Guohua; Wunsch, Hannah

2018-05-29

In the intensive care unit (ICU), studies involving specialized palliative care services have shown decreases in the use of non-beneficial life-sustaining therapies and ICU length of stay for patients. However, whether widespread availability of hospital-based palliative care is associated with less frequent use of high intensity care is unknown. To determine whether availability of hospital-based palliative care is associated with decreased markers of treatment intensity for ICU patients. Retrospective cohort study of adult ICU patients in New York State hospitals, 2008-2014. Multilevel regression was used to assess the relationship between availability of hospital-based palliative care during the year of admission and hospital length of stay, use of mechanical ventilation, dialysis and artificial nutrition, placement of a tracheostomy or gastrostomy tube, days in ICU and discharge to hospice. Of 1,025,503 ICU patients in 151 hospitals, 814,794 (79.5%) received care in a hospital with a palliative care program. Hospital length of stay was similar for patients in hospitals with and without palliative care programs (6 days, interquartile range (IQR) 3-12 vs. 6 days, IQR 3-11, adjusted rate ratio 1.04 [1.03 to 1.05], p < 0.001), as were other healthcare utilization outcomes. However, patients in hospitals with palliative care programs were 46% more likely to be discharged to hospice than those in hospitals without palliative care programs (1.7% vs. 1.4%, adjusted odds ratio 1.46 [1.30 to 1.64], p<0.001). Availability of hospital-based palliative care was not associated with differences in in-hospital treatment intensity but was associated with significantly increased hospice utilization for ICU patients. At this time, the measurable benefit of palliative care programs for critically ill patients may be the increased use of hospice facilities, as opposed to decreased healthcare utilization during an ICU-associated hospitalization.

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation.

PubMed

Allsop, Matthew J; Kite, Suzanne; McDermott, Sarah; Penn, Naomi; Millares-Martin, Pablo; Bennett, Michael I

2017-05-01

The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths ( n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.

Impact of specialist palliative care on coping with Parkinson's disease: patients and carers.

PubMed

Badger, Nathan J; Frizelle, Dorothy; Adams, Debi; Johnson, Miriam J

2018-06-01

UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease. Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England. Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'. Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Raising the bar for the care of seriously ill patients: results of a national survey to define essential palliative care competencies for medical students and residents.

PubMed

Schaefer, Kristen G; Chittenden, Eva H; Sullivan, Amy M; Periyakoil, Vyjeyanth S; Morrison, Laura J; Carey, Elise C; Sanchez-Reilly, Sandra; Block, Susan D

2014-07-01

Given the shortage of palliative care specialists in the United States, to ensure quality of care for patients with serious, life-threatening illness, generalist-level palliative care competencies need to be defined and taught. The purpose of this study was to define essential competencies for medical students and internal medicine and family medicine (IM/FM) residents through a national survey of palliative care experts. Proposed competencies were derived from existing hospice and palliative medicine fellowship competencies and revised to be developmentally appropriate for students and residents. In spring 2012, the authors administered a Web-based, national cross-sectional survey of palliative care educational experts to assess ratings and rankings of proposed competencies and competency domains. The authors identified 18 comprehensive palliative care competencies for medical students and IM/FM residents, respectively. Over 95% of survey respondents judged the competencies as comprehensive and developmentally appropriate (survey response rate = 72%, 71/98). Using predefined cutoff criteria, experts identified 7 medical student and 13 IM/FM resident competencies as essential. Communication and pain/symptom management were rated as the most critical domains. This national survey of palliative care experts defines comprehensive and essential palliative care competencies for medical students and IM/FM residents that are specific, measurable, and can be used to report educational outcomes; provide a sequence for palliative care curricula in undergraduate and graduate medical education; and highlight the importance of educating medical trainees in communication and pain management. Next steps include seeking input and endorsement from stakeholders in the broader medical education community.

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals.

PubMed

Pask, Sophie; Pinto, Cathryn; Bristowe, Katherine; van Vliet, Liesbeth; Nicholson, Caroline; Evans, Catherine J; George, Rob; Bailey, Katharine; Davies, Joanna M; Guo, Ping; Daveson, Barbara A; Higginson, Irene J; Murtagh, Fliss Em

2018-06-01

Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. In-depth qualitative interviews, analysed using Framework analysis. Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.

Palliative care - shortness of breath

MedlinePlus

... this page: //medlineplus.gov/ency/patientinstructions/000471.htm Palliative care - shortness of breath To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

Top 10 things palliative care clinicians wished everyone knew about palliative care.

PubMed

Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C

2013-08-01

With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. Copyright © 2013 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.

The current situation in education and training of health-care professionals across Africa to optimise the delivery of palliative care for cancer patients

PubMed Central

Rawlinson, FM; Gwyther, L; Kiyange, F; Luyirika, E; Meiring, M; Downing, J

2014-01-01

The need for palliative care education remains vital to contribute to the quality of life of patients, both adults and children, with cancer in Africa. The number of patients with cancer continues to rise, and with them the burden of palliative care needs. Palliative care has been present in Africa for nearly four decades, and a number of services are developing in response to the HIV/AIDS epidemic. However, the needs of cancer patients remain a challenge. Education and training initiatives have developed throughout this time, using a combination of educational methods, including, more recently, e-learning initiatives. The role of international and national organisations in supporting education has been pivotal in developing models of education and training that are robust, sustainable, and affordable. Developing a material for education and professional development needs to continue in close collaboration with that already in production in order to optimise available resources. Seeking ways to evaluate programmes in terms of their impact on patient care remains an important part of programme delivery. This article reviews the current situation. PMID:25624873

Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

PubMed

Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

2018-04-01

To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P < .001). The mean length of stay in the hospital was similar for patients seen by palliative care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

[Assessment of IDC-Pal as a Diagnostic Tool for Family Physicians to Identify Patients with Complex Palliative Care Needs in Germany: a Pilot Study].

PubMed

Comino, María Rosa Salvador; Garcia, Victor Regife; López, Maria Auxiliadora Fernández; Feddersen, Berend; Roselló, María Luisa Martin; Sanftenberg, Linda; Schelling, Jörg

2017-07-11

Background Palliative medicine is an essential component of the health care system. Basic palliative care should be provided by primary care services (family physician and home nursing) with palliative-medical basic qualification. Often it is very difficult to identify patients that would profit from a specialized palliative care team. For the evaluation of the case complexity of a palliative patient, we present a Spanish diagnostic tool IDC-Pal, which tries to specify when, why and where a palliative patient should be referred. The aims of this study were the translation and cultural adaptation of the diagnostic tool for complexity in palliative care IDC-Pal to the German language, and the measurement of its feasibility and face validity. Methods During the first phase, a forward-backward translation with linguistic and cultural adaptation of the tool IDC-Pal as well as the validation of its content by a review committee was performed. During the second phase, the preliminary version of the tool was tested by 38 family physicians that were asked for a qualitative assessment using a 10-points Likert scale (1 = "strongly disagree" and 10 = "totally agree"). Finally, a definitive version was developed. Results The translation and adaptation were achieved without major problems. Both feasibility and apparent validity of the tool IDC-Pal were rated as high. The mean response in the Likert scale was 7.79, with a SD of 0.36. Participants strongly agreed on the apparent validity of the tool with a mean of 7.82 and a SD of 0.26 and on its feasibility with a mean of 7.79, and a SD of 0.39. Conclusions A conceptually, culturally and linguistically equivalent version of the original instrument IDC-Pal was obtained. German family physicians agreed on the usability of IDC-Pal as a tool for rating the case complexity of palliative patients. These results indicate that physicians in Bavaria and eventually in Germany could benefit of the full validation of IDC-Pal. © Georg Thieme Verlag KG Stuttgart · New York.

What Is Needed to Prepare Speech Pathologists to Work in Adult Palliative Care?

ERIC Educational Resources Information Center

Pascoe, Ashleigh; Breen, Lauren J.; Cocks, Naomi

2018-01-01

Background: Speech pathologists have a pivotal role in palliative care, assisting patients with swallowing and communication disorders, yet very little is known about the preparedness of speech pathologists to work in this field. Aims: To investigate the preparedness of speech pathologists for working in palliative care. The term 'palliative care'…

Hypnosis in palliative care: from clinical insights to the science of self-regulation.

PubMed

Landry, Mathieu; Stendel, Moriah; Landry, Michel; Raz, Amir

2018-01-01

Palliative care spans a wide-ranging spectrum: from pain-management to spiritual support. As the demand for end-of-life care increases, so does the demand for innovative, effective, interventions. Mind-body techniques seem especially advantageous in a palliative context. Here we show that hypnosis serves an excellent adjunct therapy in palliative care to boost the efficacy of standard treatments. With the overarching goal of bridging clinical and scientific insights, we outline how five core principles of hypnosis can benefit the diverse needs of palliative care.

Community Palliative Care Nurses' Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care.

PubMed

Chong, LeeAi; Abdullah, Adina

2017-03-01

The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.

Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

PubMed

Weissman, David E; Morrison, R Sean; Meier, Diane E

2010-02-01

Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

Integration of Palliative Care in the Context of Rapid Response

PubMed Central

Nelson, Judith E.; Mathews, Kusum S.; Weissman, David E.; Brasel, Karen J.; Campbell, Margaret; Curtis, J. Randall; Frontera, Jennifer A.; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Weiss, Stefanie P.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.

2015-01-01

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

[The impact of patient identification on an integrated program of palliative care in Basque Country].

PubMed

Larrañaga, Igor; Millas, Jesús; Soto-Gordoa, Myriam; Arrospide, Arantzazu; San Vicente, Ricardo; Irizar, Marisa; Lanzeta, Itziar; Mar, Javier

2017-12-05

Evaluate the process and the economic impact of an integrated palliative care program. Comparative cross-sectional study. Integrated Healthcare Organizations of Alto Deba and Goierri Alto-Urola, Basque Country. Patients dead due to oncologic and non-oncologic causes in 2012 (control group) and 2015 (intervention group) liable to need palliative care according to McNamara criteria. Identification as palliative patients in primary care, use of common clinical pathways in primary and secondary care and arrange training courses for health professionals. Change in the resource use profile of patients in their last 3 months. Propensity score by genetic matching method was used to avoid non-randomization bias. The groups were compared by univariate analysis and the relationships between variables were analysed by logistic regressions and generalized linear models. One thousand and twenty-three patients were identified in 2012 and 1,142 patients in 2015. In 2015 doubled the probability of being identify as palliative patient in deaths due to oncologic (19-33%) and non-oncologic causes (7-16%). Prescriptions of opiates rise (25-68%) and deaths in hospital remained stable. Contacts per patient with primary care and home hospitalization increased, while contacts with hospital admissions decreased. Cost per patient rise 26%. The integrated palliative care model increased the identification of the target population. Relationships between variables showed that the identification had a positive impact on prescription of opiates, death outside the hospital and extension to non-oncologic diseases. Although the identification decreased admissions in hospital, costs per patient had a slight increase due to home hospitalizations. Copyright © 2017 Elsevier España, S.L.U. All rights reserved.

End-of-Life and Palliative Care for People with Intellectual Disabilities Who Have Cancer or Other Life-Limiting Illness: A Review of the Literature and Available Resources

ERIC Educational Resources Information Center

Tuffrey-Wijne, Irene; Hogg, James; Curfs, Leopold

2007-01-01

Background: As patterns of morbidity and mortality are changing, more people with intellectual disabilities develop cancer or other life-limiting illness. This paper reviews the literature around the need of people with intellectual disabilities for palliative care. Methods: A range of databases and the World Wide Web were searched for relevant…

What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review.

PubMed

Gardiner, Clare; Ingleton, Christine; Ryan, Tony; Ward, Sue; Gott, Merryn

2017-04-01

It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies.

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

PubMed

Braun, Lynne T; Grady, Kathleen L; Kutner, Jean S; Adler, Eric; Berlinger, Nancy; Boss, Renee; Butler, Javed; Enguidanos, Susan; Friebert, Sarah; Gardner, Timothy J; Higgins, Phil; Holloway, Robert; Konig, Madeleine; Meier, Diane; Morrissey, Mary Beth; Quest, Tammie E; Wiegand, Debra L; Coombs-Lee, Barbara; Fitchett, George; Gupta, Charu; Roach, William H

2016-09-13

The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements. © 2016 American Heart Association, Inc.

'Palliative sedation'? A retrospective cohort study on the use and labelling of continuously administered sedatives on a palliative care unit.

PubMed

Schildmann, Eva; Pörnbacher, Sebastian; Kalies, Helen; Bausewein, Claudia

2018-03-01

Sedatives are frequently used towards the end of life. However, there is scarce information when their use is labelled as 'palliative sedation'. To assess the use and labelling of 'continuous administration of sedatives within the last 7 days of life', based on objective operational criteria, on a palliative care unit. Retrospective cohort study, using medical records. Explorative statistical analysis (SPSS 23). Patients who died on a palliative care unit from August 2014 to July 2015. Sedatives recorded were benzodiazepines, levomepromazine, haloperidol ⩾5 mg/day and propofol. Of the 192 patients, 149 (78%) patients received continuous sedatives within the last week of life. The prevalence of delirium/agitation was significantly higher in patients with continuous sedatives compared to those without continuous sedatives at admission to the unit (35% vs 16%, p = 0.02) and on the day before death (58% vs 40%, p = 0.04). The term '(palliative) sedation' was used in the records for 22 of 149 (15%) patients with continuous sedatives. These patients had significantly higher total daily midazolam doses 2 days before death (median (range), 15.0 (6.0-185.0) mg vs 11.5 (1.0-70.0) mg, p = 0.04) and on the day of death (median (range), 19.5 (7.5-240.0) mg vs 12.5 (2.0-65.0) mg, p = 0.01). The dose range was large in both groups. The prevalence of delirium/agitation was associated with the administration of continuous sedatives. There was no consistent pattern regarding labelling the use of continuous sedatives as '(palliative) sedation'. Multicentre mixed-methods research is needed for a better characterization of sedation practices in palliative care.

Evidence on the cost and cost-effectiveness of palliative care: a literature review.

PubMed

Smith, Samantha; Brick, Aoife; O'Hara, Sinéad; Normand, Charles

2014-02-01

In the context of limited resources, evidence on costs and cost-effectiveness of alternative methods of delivering health-care services is increasingly important to facilitate appropriate resource allocation. Palliative care services have been expanding worldwide with the aim of improving the experience of patients with terminal illness at the end of life through better symptom control, coordination of care and improved communication between professionals and the patient and family. To present results from a comprehensive literature review of available international evidence on the costs and cost-effectiveness of palliative care interventions in any setting (e.g. hospital-based, home-based and hospice care) over the period 2002-2011. Key bibliographic and review databases were searched. Quality of retrieved papers was assessed against a set of 31 indicators developed for this review. PubMed, EURONHEED, the Applied Social Sciences Index and the Cochrane library of databases. A total of 46 papers met the criteria for inclusion in the review, examining the cost and/or utilisation implications of a palliative care intervention with some form of comparator. The main focus of these studies was on direct costs with little focus on informal care or out-of-pocket costs. The overall quality of the studies is mixed, although a number of cohort studies do undertake multivariate regression analysis. Despite wide variation in study type, characteristic and study quality, there are consistent patterns in the results. Palliative care is most frequently found to be less costly relative to comparator groups, and in most cases, the difference in cost is statistically significant.

On the road again: patient perspectives on commuting for palliative care.

PubMed

Pesut, Barbara; Robinson, Carole A; Bottorff, Joan L; Fyles, Gillian; Broughton, Sandra

2010-06-01

The aim of this research project was to gain an understanding of the experiences of rural cancer patients who commute to an urban cancer center for palliative care. The study utilized a mixed method design. Fifteen individuals with a palliative designation participated in semi-structured interviews and filled out the Problems and Needs in Palliative Care Questionnaire. Qualitative findings included three major themes: cultures of rural life and care, strategies for commuting, and the effects of commuting. Participants valued their rural lifestyles and gained significant support from their communities. Strategies included preparing for the trip with particular attention to pain management, making the most of time, and maintaining significant relationships. Establishing a routine helped to offset the anxiety of commuting. Commuting was costly but the quality of life and supportive relationships obtained through treatment were significant benefits. Questionnaire data suggested that participants were experiencing a number of problems but few indicated they desired more professional attention to those problems. Rural lifestyles are often an important part of overall well-being and commuting for care is both costly and complex. Health care providers should assist individuals to weigh the relative contributions of staying in their rural locale versus commuting for care to their overall quality of life. Palliative-care individuals in this study indicated a number of ongoing problems but were not inclined to seek further assistance from health care providers in addressing those problems. Clinicians should actively inquire about problems and further research is needed to understand why patients are reluctant to seek help.

Use of podcast technology to facilitate education, communication and dissemination in palliative care: the development of the AmiPal podcast.

PubMed

Nwosu, Amara Callistus; Monnery, Daniel; Reid, Victoria Louise; Chapman, Laura

2017-06-01

Podcasts have the potential to facilitate communication about palliative care with researchers, policymakers and the public. Some podcasts about palliative care are available; however, this is not reflected in the academic literature. Further study is needed to evaluate the utility of podcasts to facilitate knowledge-transfer about subjects related to palliative care. The aims of this paper are to (1) describe the development of a palliative care podcast according to international recommendations for podcast quality and (2) conduct an analysis of podcast listenership over a 14-month period. The podcast was designed according to internationally agreed quality indicators for medical education podcasts. The podcast was published on SoundCloud and was promoted via social media. Data were analysed for frequency of plays and geographical location between January 2015 and February 2016. 20 podcasts were developed which were listened to 3036 times (an average of 217 monthly plays). The Rich Site Summary feed was the most popular way to access the podcast (n=1937; 64%). The mean duration of each podcast was 10 min (range 3-21 min). The podcast was listened to in 68 different countries and was most popular in English-speaking areas, of which the USA (n=1372, 45.2%), UK (n=661, 21.8%) and Canada (n=221, 7.3%) were most common. A palliative care podcast is a method to facilitate palliative care discussion with global audience. Podcasts offer the potential to develop educational content and promote research dissemination. Future work should focus on content development, quality metrics and impact analysis, as this form of digital communication is likely to increase and engage wider society. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.

Out-of-hours palliative care: what are the educational needs and preferences of general practitioners?

PubMed

Magee, Claire; Koffman, Jonathan

2016-09-01

Offering genuine choice to patients over place of care and death requires the provision of high-quality palliative care 24/7. This study examines the confidence of out-of-hours general practitioners (GPs) in symptom control and end of life prescribing, and identifies their educational needs and preferences in order to inform recommendations for future education. A self-completion postal survey was designed and sent to 1005 GPs working for an independent provider of out-of-hours services across England. Quantitative data were analysed using descriptive statistics and non-parametric tests. 203 (20.3%) GPs completed the survey questionnaire; 13.3% (n=27) worked exclusively out-of-hours. Confidence in assessing palliative care emergencies (42.8%, n=87: 'not so confident' or 'not at all confident'), managing symptoms in non-cancer patients (39.4%, n=80) and prescribing a new syringe driver (39.0%, n=79) was lowest. Lower confidence was associated with infrequent exposure to palliative patients (p<0.05) and lack of training in palliative care (p<0.05); 12.8% (n=26) had never received formal training. Educational preferences were closely associated with confidence (p<0.0005); the topics above were most requested. E-learning was the preferred method (67.5%, n=137). 82.1% (n=165) believed training focused on out-of-hours work would be beneficial. We identify that confidence in key palliative care competences is severely lacking. Educational strategies to address this concern must be targeted at GPs preferences for content and mode of delivery. Regular e-learning is favoured, but should be blended with other approaches that promote engagement including out-of-hours themed workshops and case discussion. Specialist palliative care services should engage with out-of-hours providers to support education. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Differential effects of early palliative care based on the age and sex of patients with advanced cancer from a randomized controlled trial.

PubMed

Nipp, Ryan D; El-Jawahri, Areej; Traeger, Lara; Jacobs, Jamie M; Gallagher, Emily R; Park, Elyse R; Jackson, Vicki A; Pirl, William F; Temel, Jennifer S; Greer, Joseph A

2018-04-01

Early palliative care interventions enhance patient outcomes, including quality of life, mood, and coping, but it remains unclear whether certain subgroups of patients are more likely to benefit from early palliative care. We explored whether age and sex moderate the improved outcomes seen with early palliative care. We performed a secondary analysis of data from a randomized trial of 350 patients with advanced lung and non-colorectal gastrointestinal cancer. Patients received an early palliative care intervention integrated with oncology care or usual oncology care alone. We used linear regression to determine if age (older or younger than 65) and sex moderated the effects of the intervention on quality of life (Functional Assessment of Cancer Therapy-General (FACT-G)), depression symptoms (Patient Health Questionnaire 9 (PHQ-9)), and coping (Brief COPE) within lung and gastrointestinal subgroups. At 24 weeks, younger patients with lung cancer receiving early palliative care reported increased use of active coping ( B = 1.74; p = 0.02) and decreased use of avoidant coping ( B = -0.97; p = 0.02), but the effects of early palliative care on these outcomes were not significant for older patients. Male patients with lung cancer assigned to early palliative care reported better quality of life (FACT-G: B = 9.31; p = 0.01) and lower depression scores (PHQ-9: B = -2.82; p = 0.02), but the effects of early palliative care on these outcomes were not significant for female patients. At 24 weeks, we found no age or sex moderation effects within the gastrointestinal cancer subgroup. Age and sex moderate the effects of early palliative care for patients with advanced lung cancer. Early palliative care may need to be tailored to individuals' unique sociodemographic and clinical characteristics.

Changes in Relatives' Perspectives on Quality of Death, Quality of Care, Pain Relief, and Caregiving Burden Before and After a Region-Based Palliative Care Intervention.

PubMed

Maeda, Isseki; Miyashita, Mitsunori; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Izumi, Noriko; Yamaguchi, Takuhiro; Igarashi, Miyuki; Kato, Masashi; Morita, Tatsuya

2016-11-01

A region-based palliative care intervention (Outreach Palliative Care Trial of Integrated Regional Model Study) increased home death, access to specialist palliative care, quality of care, and quality of death and dying. The objective of this study was to examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care. The intervention program was implemented from April 2008 to March 2011. Two bereavement surveys were conducted before and after intervention involving 4228 family caregivers of deceased cancer patients. Family-perceived quality of care (range 1-6), quality of death and dying (1-7), pain relief (1-7), and caregiver burden (1-7) were measured. Response rates were 69% (preintervention) and 66% (postintervention), respectively. Family-perceived quality of care (adjusted mean 4.89, 95% CI 4.54-5.23) and quality of death and dying (4.96, 4.72-5.20) at home were the highest and sustained throughout the study. Palliative care units were at the intermediate level between home and hospitals. In hospitals, both quality of care and quality of death and dying were low at baseline but significantly improved after intervention (quality of care: 4.24, 4.13-4.34 to 4.43, 4.31-4.54, P = 0.002; quality of death and dying: 4.22, 4.09-4.36 to 4.36, 4.22-4.50, P = 0.012). Caregiver burden did not significantly increase after intervention, regardless of place of death. The dual strategies of transition of place of death to home and improving quality of care in hospitals should be recognized as important targets for improving region-level palliative care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Development of a questionnaire to measure the key attributes of the community palliative care specialist nurse role.

PubMed

Cameron, Dee; Johnston, Bridget

2015-02-01

Recent worldwide economic events have forced an examination of the nurse's contribution to high-quality, effective, person-centred care. Since the role of specialist nurses is considered one of the least understood or valued developments in nursing, specialist nurses must demonstrate their contribution to quality, person-centred health care. To develop a questionnaire which aims to measure the quality of care provided by palliative care specialist nurses from the patients' perspective and to undertake initial validation. The process of questionnaire development involved six phases including systematic literature reviews, patient advisory groups and expert panel reviews, each of which contributed to the questionnaire face and content validity. Johnston's Expert Palliative Care Nurse Model (2002; 2005) provided an evidence-based framework for the development of the questionnaire, and enabled the identification of the key attributes of the palliative care specialist nurse role, thereby providing the themes on which to base the questionnaire. The Quality Measure for Palliative Nursing, a questionnaire, was developed. The themes identified in the questionnaire--personal characteristics, communication skills, knowledge, relationship with patient and providing comfort--aim to facilitate measurement of the quality of care provided by palliative care specialist nurses. Designed for use by palliative patients the Quality Measure for Palliative Nursing is a one-page questionnaire comprising of 15 questions. The Quality Measure for Palliative Nursing is unique since it aims to measure the quality of care provided by community palliative care specialist nurses, and could also be used to measure patient satisfaction with the quality of care provided. Further testing is recommended to ensure that this questionnaire can provide reliable and valid results.

Unmet Needs of African Americans and Whites at the Time of Palliative Care Consultation.

PubMed

Kamal, Arif H; Bull, Janet; Wolf, Steven P; Portman, Diane; Strand, Jacob; Johnson, Kimberly S

2017-06-01

Differences among patient populations that present to consultative palliative care are not known. Such an appreciation would inform health-care delivery tailored to unique populations. We aimed to compare characteristics and palliative care needs of African Americans (AAs) and whites during initial palliative care consultation. We analyzed patient-reported, clinician-entered clinical encounter data from a large, multisite community-based, nonhospice palliative care collaborative. We included first specialty palliative care consultations from January 1, 2014, to July 2, 2015, across 15 sites within the Global Palliative Care Quality Alliance registry. Demographics, disease, performance status, advance care planning, and symptom prevalence/severity were compared. Of 775 patients, 12.9% (N = 100) were AA. African Americans were younger (63 vs 75.4 years, P < .0001). A larger proportion of AAs had a diagnosis of cancer (45.0% vs 36.3%, P = .09) and in the hospital (71% vs 61.8%, P = .07). African Americans were more likely to have a Palliative Performance Score of 0 to 30 (35.6% vs 23.7%, P = .049). Around 50% in both racial groups were full code; slightly more than 40% had an advance directive. Nearly two-thirds in both racial groups reported 3 or more symptoms of any severity; one-third reported 3 or more moderate or severe symptoms. A larger proportion of Africans than whites reported pain of any severity (66.0% vs 56.1%, P = .06). All patients present to palliative care consultations with significant symptom and advance care planning needs. Further research is needed to identify how to deliver palliative care: earlier, in noncancer conditions, and improve pain management in AA populations.

The provision of generalist and specialist palliative care for patients with non-malignant respiratory disease in the North and Republic of Ireland: a qualitative study.

PubMed

Veigh, Clare Mc; Reid, Joanne; Larkin, Philip; Porter, Sam; Hudson, Peter

2017-07-11

Previous research and key guidelines have suggested potential models of palliative care for patients with COPD and interstitial lung disease. However, these recommendations are often not effectively implemented in clinical practice and are void of guidance regarding palliative care for patients with bronchiectasis, another form of non-malignant respiratory disease. The aim of this research was to explore generalist and specialist palliative care service provision for people with non-malignant respiratory disease in the North and Republic of Ireland. Qualitative study involving a convenience sample of 17 bereaved carers and 18 healthcare professionals recruited from 2 rural and 2 urban sites on the Island of Ireland. Data collection consisted of semi-structured interviews with carers of patients with COPD, interstitial lung disease or bronchiectasis who had died 3-18 months previously; and 4 focus groups with healthcare professionals. Data analysed using thematic analysis. Findings highlighted the lack of a clear model of holistic care delivery for patients with non-malignant respiratory disease and illuminated the varying levels of palliative care provision this client group experienced. Additionally, ambiguity amongst healthcare professionals regarding prognostication illuminated the importance of the provision of palliative care being based on patient need, not prognosis. This research developed a potential model of palliative care which may help healthcare professionals introduce palliative care, and specialist respiratory care, early in the disease trajectory of non-malignant respiratory disease, whilst also encouraging the involvement of specialist palliative care for complex symptom management. This research provides an important insight into a potential model of palliative care for people with non-malignant respiratory disease, inclusive of bronchiectasis. However, the feasibility of integrating this model into clinical practice requires further exploration.

Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

PubMed

Gielen, Joris; Van den Branden, Stef; Van Iersel, Trudie; Broeckaert, Bert

2012-09-01

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

Exploring community nurses' perceptions of life review in palliative care.

PubMed

Trueman, Ian; Parker, Jonathan

2006-02-01

This exploratory study aimed to identify community nurses' understanding of life review as a therapeutic intervention for younger people requiring palliative care. The objectives set out to: (i) Describe the participants' understanding of reminiscence and life review (ii) Detail their current ideas regarding a structured approach to using life review in the community setting. (iii) Outline their understanding of the possible advantages and limitations of life review in relation to palliative care. (iv) Identify future training requirements. The literature review illustrated how the eighth developmental stage of Erikson's theory, ego-integrity vs. despair, is a 'crisis' often faced by older people entering the final stage of life. Life review is considered a useful therapeutic intervention in the resolution of this crisis. Younger terminally ill people in the palliative stage of an illness may face the same final crises due to their reduced lifespan. Therefore, this study explored the benefits and limitations of life review as an intervention in palliative care. The study used a purposive sample of community nurses responsible for delivering generic and specialist palliative care. A qualitative method of data collection in the form of three focus group interviews was used. Subsequent data were manually analysed, categorized and coded with associations between the themes identified. The findings suggested that community nurses have limited knowledge pertaining to the use of life review and tend to confuse the intervention with reminiscence. Furthermore, they believed that life review could potentially cause harm to practitioners engaged in listening to another person's life story. However, the participants concur that with appropriate training they would find life review a useful intervention to use in palliative care. The results led to the identification of a number of key recommendations: Community nurses require specific education in the technicalities of life review and additional interpersonal skills training. The need for formalized support through clinical supervision is also recognized and discussed. Finally, suggestions are offered regarding the need to generate wider evidence and how, possibly, to integrate life review into existing palliative care services. This study has demonstrated that community nurses are keen to extend the support offered to younger terminally ill people who are in the palliative stage of their illness. Despite having limited knowledge of life the main components and underpinning theory pertaining to life review participants could appreciate the potential of life review as a therapeutic intervention in palliative care and were keen to learn more about its use and gain the necessary knowledge and skills.

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review.

PubMed

Gardiner, Clare; Gott, Merryn; Ingleton, Christine

2012-05-01

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers. To explore factors that support partnership working between specialist and generalist palliative care providers. Systematic review. A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care

PubMed Central

Freeman, Rachel; Luyirika, Emmanuel BK; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

Volunteers in Palliative Care - A Comparison of Seven European Countries: A Descriptive Study.

PubMed

Woitha, Kathrin; Hasselaar, Jeroen; van Beek, Karen; Radbruch, Lukas; Jaspers, Birgit; Engels, Yvonne; Vissers, Kris

2015-07-01

In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. © 2014 World Institute of Pain.

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

PubMed Central

Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

2015-01-01

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

Evaluation of A Novel Information-Sharing Instrument for Home-Based Palliative Care

PubMed Central

Sawada, Koichiro; Shimada, Masanari; Kadoya, Shinichi; Endo, Naoki; Ishiguro, Kaname; Takashima, Rumi; Amemiya, Yoko; Fujikawa, Yasunaga; Ikezaki, Tomoaki; Takeuchi, Miyako; Kitazawa, Hidenori; Iida, Hiroyuki; Koseki, Shiro; Morita, Tatsuya; Sasaki, Koji; Kashii, Tatsuhiko; Murakami, Nozomu

2015-01-01

Aim: To examine the feasibility and usefulness of a novel region-based pathway: the Regional Referral Clinical Pathway for Home-Based Palliative Care. Method: This was a feasibility study to evaluate the frequency of variances and the perceived usefulness of pathway using in-depth interviews. All patients with cancer referred to the palliative care team between 2011 and 2013 and received home care services were enrolled. Result: A total of 44 patients were analyzed, and pathway was completed in all the patients. The target outcome was achieved in 61.4% while some variances occurred in 54.5%. Nine categories were identified as the usefulness of the pathway, such as reviewing and sharing information and promoting communication, education, motivation, and relationships. Conclusion: This novel pathway is feasible and seems to be useful. PMID:24814723

Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya.

PubMed

Ali, Zipporah

2016-01-01

In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015-2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya's successful experience.

Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care.

PubMed

Johnstone, Megan-Jane

2012-12-01

In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

ICU Bedside Nurses' Involvement in Palliative Care Communication: A Multicenter Survey.

PubMed

Anderson, Wendy G; Puntillo, Kathleen; Boyle, Deborah; Barbour, Susan; Turner, Kathleen; Cimino, Jenica; Moore, Eric; Noort, Janice; MacMillan, John; Pearson, Diana; Grywalski, Michelle; Liao, Solomon; Ferrell, Bruce; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Mitchell, William; Pantilat, Steven

2016-03-01

Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. To describe the perspectives of ICU bedside nurses on their involvement in palliative care communication. A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Impact of Oncologists' Attitudes Toward End-of-Life Care on Patients' Access to Palliative Care.

PubMed

Hui, David; Cerana, Maria Agustina; Park, Minjeong; Hess, Kenneth; Bruera, Eduardo

2016-09-01

It is unclear how oncologists' attitudes toward end-of-life (EOL) care affect the delivery of care. The present study examined the association between oncologists' EOL care attitudes and (a) timely specialist palliative care referral, (b) provision of supportive care, and (c) EOL cancer treatment decisions. We randomly surveyed 240 oncology specialists at our tertiary care cancer center to assess their attitudes toward EOL care using a score derived from the Jackson et al. qualitative conceptual framework (0 = uncomfortable and 8 = highly comfortable with EOL care). We determined the association between this score and clinicians' report of specialist palliative care referral, provision of supportive care, and EOL cancer treatment decisions. Of the 182 respondents (response rate of 76%), the median composite EOL care score was 6 (interquartile range, 5-7). A higher EOL score was significantly associated with solid tumor oncology (median 7 vs. 6 for hematologic oncology; p = .003), a greater willingness to refer patients with newly diagnosed cancer to specialist palliative care (median, 7 vs. 6; p = .01), greater comfort with symptom management (median, 6 vs. 5; p = .01), and provision of counseling (median, 7 vs. 4; p < .001) but not with cancer treatment decisions. We observed a gradient effect, with higher scores associated with a greater proportion of patients referred to palliative care (score 0-4, 27%; 5, 31%; 6, 32%; 7, 35%; and 8, 45%; p = .007). Greater comfort with EOL care was associated with higher rates of specialist palliative care referral and self-reported primary palliative care delivery. More support and education are needed for oncologists who are less comfortable with EOL care. In the present survey of oncology specialists, most reported that they were comfortable with end-of-life (EOL) care, which was in turn, associated with greater provision of primary palliative care and higher rates of referral to specialist palliative care. The results of the present study highlight the need for more support and education for oncologists less comfortable with EOL care because their patients might receive lower levels of both primary and secondary palliative care. ©AlphaMed Press.

Development of a Community-Based Palliative Care Model for Advance Cancer Patients in Public Health Centers in Busan, Korea.

PubMed

Kim, Sook-Nam; Choi, Soon-Ock; Shin, Seong Hoon; Ryu, Ji-Sun; Baik, Jeong-Won

2017-07-01

A feasible palliative care model for advance cancer patients is needed in Korea with its rapidly aging population and corresponding increase in cancer prevalence. This study describes the process involved in the development of a community-based palliative care (CBPC) model implemented originally in a Busan pilot project. The model development included steps I and II of the pilot project, identification of the service types, a survey exploring the community demand for palliative care, construction of an operational infrastructure, and the establishment of a service delivery system. Public health centers (including Busan regional cancer centers, palliative care centers, and social welfare centers) served as the regional hubs in the development of a palliative care model. The palliative care project included the provision of palliative care, establishment of a support system for the operations, improvement of personnel capacity, development of an educational and promotional program, and the establishment of an assessment system to improve quality. The operational infrastructure included a service management team, provision teams, and a support team. The Busan Metropolitan City CBPC model was based on the principles of palliative care as well as the characteristics of public health centers that implemented the community health projects. The potential use of the Busan CBPC model in Korea should be explored further through service evaluations.

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

Nurse-family interaction in Malaysian palliative care settings: a focused literature review.

PubMed

Namasivayam, Pathma; O Connor, Margaret; Barnett, Tony; Lee, Susan; Peters, Louise

2011-10-01

Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. The search engines CINAHL, Medline, PsycINFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

PubMed

Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

2014-01-01

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

Integrating palliative care into disease management guidelines.

PubMed

Emanuel, Linda; Alexander, Carla; Arnold, Robert M; Bernstein, Richard; Dart, Richard; Dellasantina, Christopher; Dykstra, Lee; Tulsky, James

2004-12-01

Palliative care should not be reserved for those who are close to dying; as a comprehensive approach to minimizing illness-related suffering, it is appropriate for patients with significant illness from the time of diagnosis on. The American Hospice Foundation Guidelines Committee's initiative aims to provide a practical approach for guideline writers and others to integrate palliative care into disease management and care services whenever it is relevant. A consensus approach was used to design recommendations for upgrading existing disease management and service guidelines to include palliative care. A template is described for identifying stages in disease management guidelines when integration of palliative care is appropriate: (1) Introductory sections to disease management guidelines should include prognosis and other disease consequences; (2) Diagnostic sections should include recommendations for conducting a whole patient assessment; (3) Treatment sections should include discernment of patient goals for care, continuous goal reassessment, palliative care interventions to reduce suffering as needed, and treatment decisions should include discussion of the type of expected improvement. Service guidelines should note the role of interdisciplinary team care as well as palliative care consultative or care services; (4) Sections that conclude the care provided to incurable patients should not end without recommendations on grief and bereavement care, and care during the last hours of living. The American Hospice Foundation Guidelines Committee recommends integration of relevant aspects of palliative care in introductory, diagnostic, treatment, and closing sections of management guidelines for all significant illnesses.

Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

PubMed

Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil

2015-11-02

Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was developed and psychometrically evaluated in a sample of Norwegian patients with various diagnoses receiving palliative care in different care contexts. The evaluation of the QPP-PC shows promising results, although it needs to be further validated and tested in other contexts and countries.

Interview: Cancer pain management: the last decade and looking forward.

PubMed

Kaasa, Stein

2013-11-01

Stein Kaasa, MD, speaks to Dominic Chamberlain, Assistant Commissioning Editor: Stein Kaasa specializes in oncology and palliative medicine. In 1993 he was appointed as the first professor in palliative medicine in Scandinavia and he was one of the founders of the palliative care unit in Trondheim (Norway). He also was the founder of the European Palliative Care Research Centre. He has been president of the European Association for Palliative Care, coordinator for one EU-funded project and is Work Package Leader of several EU-funded research collaboratives and international partnerships on research and policy development. Kaasa has been an important advocate for evidence-based practice and has worked extensively to get palliative care research on the agenda, both nationally and internationally. Through his role as Cancer Director in Norway he coordinated and led the development of guidelines for different cancer diseases. Important areas of work were the development of regional cancer treatment guidelines and integration of patient disease trajectories into the existing guidelines. Currently he is Vice Managing Director at St Olavs Hospital, Trondheim University Hospital (Norway), Professor of palliative medicine at the Faculty of Medicine, Norwegian University of Science and Technology and leads the European Palliative Care Research Centre and chairs the European Association for Palliative Care Research Network. Professor Kaasa has published more than 450 articles and book chapters. He has authored the Nordic Textbook of Palliative Care and is coauthor and editor of the Oxford Textbook of Palliative Medicine. Professor Kaasa advises many international journals - either as an advisory board member or as a reviewer (Journal of Pain and Symptom Management, Palliative Medicine, Journal of Palliative Medicine, Oncology, Journal of Clinical Oncology, Pain and The Lancet Oncology).

Characteristics and Outcomes of In-Hospital Palliative Care Consultation among Patients with Renal Disease Versus Other Serious Illnesses.

PubMed

Grubbs, Vanessa; O'Riordan, David; Pantilat, Steve

2017-07-07

Despite significant morbidity and mortality associated with ESRD, these patients receive palliative care services much less often than patients with other serious illnesses, perhaps because they are perceived as having less need for such services. We compared characteristics and outcomes of hospitalized patients in the United States who had a palliative care consultation for renal disease versus other serious illnesses. In this observational study, we used data collected by the Palliative Care Quality Network, a national palliative care quality improvement collaborative. The 23-item Palliative Care Quality Network core dataset includes demographics, processes of care, and clinical outcomes of all hospitalized patients who received a palliative care consultation between December of 2012 and March of 2016. The cohort included 33,183 patients, of whom 1057 (3.2%) had renal disease as the primary reason for palliative care consultation. Mean age was 71.9 (SD=16.8) or 72.8 (SD=15.2) years old for those with renal disease or other illnesses, respectively. At the time of consultation, patients with renal disease or other illnesses had similarly low mean Palliative Performance Scale scores (36.0% versus 34.9%, respectively; P =0.08) and reported similar moderate to severe anxiety (14.9% versus 15.3%, respectively; P =0.90) and nausea (5.9% versus 5.9%, respectively; P >0.99). Symptoms improved similarly after consultation regardless of diagnosis ( P ≥0.50), except anxiety, which improved more often among those with renal disease (92.0% versus 66.0%, respectively; P =0.002). Although change in code status was similar among patients with renal disease versus other illnesses, from over 60% full code initially to 30% full code after palliative care consultation, fewer patients with renal disease were referred to hospice than those with other illnesses (30.7% versus 37.6%, respectively; P <0.001). Hospitalized patients with renal disease referred for palliative care consultation had similar palliative care needs, improved symptom management, and clarification of goals of care as those with other serious illnesses. Copyright © 2017 by the American Society of Nephrology.

Palliative care and active disease management are synergistic in modern surgical oncology.

PubMed

Sadler, Erin M; Hawley, Philippa H; Easson, Alexandra M

2018-04-01

Palliative care has long been described in medical literature but only recently is being discussed in the surgical domain. Mounting evidence suggests that early integration of palliative care improves patient outcomes and this is especially true of oncology patients. Thus, the pendulum is swinging toward recognizing that palliative care and active disease management are not mutually exclusive but rather synergistic in modern surgical oncology. Here we use a patient vignette to demonstrate the new challenges and possibilities in modern surgical oncology, we then discuss the historic perspective of palliative care and describe how the paradigm is shifting. Finally, we introduce a model that may be beneficial in conceptualizing this new way of thinking about and integrating palliative care into surgical oncology. Copyright © 2017 Elsevier Inc. All rights reserved.

Can e-learning help you to connect compassionately? Commentary on a palliative care e-learning resource for India.

PubMed

Datta, Soumitra Shankar; Agrawal, Sanjit

2017-01-01

e-learning resources need to be customised to the audience and learners to make them culturally relevant. The ' Palliative care e-learning resource for health care professionals in India' has been developed by the Karunashraya Hospice, Bengaluru in collaboration with the Cardiff Palliative Care Education Team, Wales to address the training needs of professionals in India. The resource, comprising over 20 modules, integrates psychological, social and medical care for patients requiring palliative care for cancer and other diseases. With increased internet usage, it would help in training a large number of professionals and volunteers in India who want to work in the field of palliative care.

Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team.

PubMed

Stilos, Kalli; Daines, Pat

2013-03-01

Demand for palliative care services in Canada will increase owing to an aging population and the evolving role of palliative care in non-malignant illness. Increasing healthcare demands continue to shape the clinical nurse specialist (CNS) role, especially in the area of palliative care. Clinical nurse specialists bring specialized knowledge, skills and leadership to the clinical setting to enhance patient and family care. This paper highlights the clinical leadership role of the CNS as triage leader for a hospital-based palliative care consulting team. Changes to the team's referral and triage processes are emphasized as key improvements to team efficiency and timely access to care for patients and families.

Factors associated with emergency services use in Taiwanese advanced cancer patients receiving palliative home care services during out-of-hours periods: a retrospective medical record study.

PubMed

Kao, Yee-Hsin; Liu, Yao-Ting; Koo, Malcolm; Chiang, Jui-Kun

2018-03-12

For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan. The use of emergency medical services by these patients was dichotomized into either normal hours (8 a.m. to midnight, Monday to Friday, excluding public holidays) of palliative home care or outside normal hours. Logistic regression analyses were performed to evaluate factors associated with emergency services use during out-of-hours period of palliative home care. Of the 94 patients receiving palliative home care, 65 had used emergency services at least once during the 3-year study period. Of these 65 patients, 40% used emergency services during out-of-hours of palliative home care. Patients with distressing conditions (defined as the occurrence of any two conditions of dyspnea, change of consciousness, or gastrointestinal bleeding) were significantly more likely to use emergency services during out-of-hours of palliative home care. Patients at risk of developing dyspnea, change of consciousness, or gastrointestinal bleeding should be provided with relevant information regarding these symptoms and signs.

An evaluation of Hospice New Zealand's interprofessional fundamentals of palliative care program at a single site.

PubMed

Henning, Marcus; Hu, Julie; Webster, Craig; Brown, Hadley; Murphy, Jo

2015-06-01

To study the efficacy of two modules within the Fundamentals of Palliative Care educational program within a single site. The modules included the concepts of Essence of Palliative Care and Pain and Symptom Management. A mixed-methods approach incorporating questionnaires and interviews was implemented. Two phases were included. First, a purposive sample of 22 workshop participants were invited to fill out evaluation questionnaires on two occasions (immediately after the session and four weeks as follow-up). Second, semistructured interviews were conducted and interviews transcribed and analyzed using content analysis. Participants felt they gained further knowledge in palliative patient management and refined their clinical practice. The questionnaire feedback revealed that the Essence of Palliative Care module provided a breadth of content but had difficulties in capturing the diverse needs of all attendees. The Pain and Symptom Management module was perceived as more technical and clinical, and this suited health professionals with an informed background. The interviewee feedback (three nurses, three nurse educators, one manager) suggested that the learning outcomes were comprehensive but needed to be more sensitive to learner needs. The teaching and learning activities were perceived as useful and encouraging. However, learners came from diverse contexts, and it was difficult to suit all learning preferences. Assessment and evaluation processes required more psychometric attention. The piloting of the Fundamentals of Palliative Care program at this single site was of benefit and relevance to participants in their clinical practice. Overall, participants felt the course was useful to them and that they were able to gain valuable knowledge and skills. Several areas could be refined to optimize the learning, including: (1) knowing attendee learning potentialities and prior experiences, (2) considering a more inclusive and formal assessment process, (3) creating diverse mechanisms for disseminating knowledge and skills, and (4) improving methods of evaluation.

Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.

PubMed

Collins, Anna; McLachlan, Sue-Anne; Philip, Jennifer

2017-10-01

Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.

Availability of Dutch General Practitioners for After-Hours Palliative Care.

PubMed

Plat, Fredrik M; Peters, Yvonne A S; Giesen, Paul; Smits, Marleen

2018-01-01

Continuity of care is important for palliative patients in their end of life. In the Netherlands, after-hours primary care for palliative patients is either provided by large-scale general practitioner (GP) cooperatives or GPs choose to give palliative care by themselves while they are not on duty. To examine the availability of, perceived problems by, and attitude of Dutch GPs regarding providing palliative care for their own patients outside office hours. Cross-sectional observational study among 1772 GPs from 10 Dutch regions. Online questionnaire among GPs affiliated with 10 GP cooperatives. Five hundred twenty-four (29.6%) eligible questionnaires were returned. Of the GPs, 60.8% were personally available outside office hours for their own palliative patients on their own private cell phone and performed home visits if needed. In 33.0%, GPs were willing to make home visits in private time instigated by the GP cooperative and 26.8% were only accessible for telephone consultation by the GP cooperative. In 12.2%, the GP delegated after-hours palliative care completely to the GP cooperative. The GPs predominantly reported "time pressure" problems (17.3%) as a barrier and 61.7% stated that after-hours palliative care is the responsibility of the own GP. The large majority of Dutch GPs is personally available for telephone consultation and/or willing to provide palliative care for their own patients outside office hours. For the future, it is important to maintain the willingness of GPs to remain personally available for their palliative patients.

Changes in the quantity and level of evidence of palliative and hospice care literature: the last century.

PubMed

Tieman, Jennifer; Sladek, Ruth; Currow, David

2008-12-10

To objectively quantify the literature and the clinical trial basis for palliative and hospice practice given a perception that its evidence base is not well developed. Using Ovid Medline, the study looked at cumulative and absolute numbers of articles in the general medical literature and the palliative and hospice care literature. The same comparisons were made exploring clinical trials from 1902 to 2005. Data were collated in five year groups from 1970 onward using a highly specific search phrase. The proportion of all Ovid Medline publications relating to palliative and hospice care rose from 0.08% in 1970 to 0.38% of the literature in 2005. In the same time, clinical trials increased from 0.96% to 7.22% of the palliative care literature published. By 2005, one in every 122 clinical trials published in the literature as a whole was in palliative or hospice care. The rate of growth in palliative care clinical trials as a proportion of all palliative and hospice publications was on average 1.4 times greater than in the corresponding general literature. More than one half of these studies were reported in just 43 journals, most of which were not specialist palliative and hospice care journals. Given the diversity of journals in which clinical studies related to hospice and palliative care appear, there is a key challenge for clinicians in finding ways that will allow currency of practice in a broad and rapidly changing field.

Is Palliative Care Right for You?

MedlinePlus

... For Family Caregivers Glossary Menu Is Palliative Care Right for You? Answer the following questions to determine whether palliative care might be right for you or someone close to you. Remember, ...

A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on?

PubMed

Rosenwax, Lorna; Spilsbury, Katrina; McNamara, Beverley A; Semmens, James B

2016-05-10

Historically, specialist palliative care has been accessed by a greater proportion of people dying with cancer compared to people with other life-limiting conditions. More recently, a variety of measures to improve access to palliative care for people dying from non-cancer conditions have been implemented. There are few rigorous population-based studies that document changes in palliative care service delivery relative to the number of patients who could benefit from such services. A retrospective cohort study of the last year of life of persons with an underlying cause of death in 2009-10 from cancer, heart failure, renal failure, liver failure, chronic obstructive pulmonary disease, Alzheimer's disease, motor neurone disease, Parkinson's disease, Huntington's disease and/or HIV/AIDS. The proportion of decedents receiving specialist palliative care was compared to a 2000-02 cohort. Logistic regression models were used identify social and demographic factors associated with accessing specialist palliative care. There were 12,817 deaths included into the cohort; 7166 (56 %) from cancer, 527 (4 %) from both cancer and non-cancer conditions and 5124 (40 %) from non-cancer conditions. Overall, 46.3 % of decedents received community and/or hospital based specialist palliative care; a 3.5 % (95 % CI 2.3-4.7) increase on specialist palliative care access reported ten years earlier. The majority (69 %; n = 4928) of decedents with cancer accessed palliative care during the last year of life. Only 14 % (n = 729) of decedents with non-cancer conditions accessed specialist palliative care, however, this represented a 6.1 % (95 % CI 4.9-7.3) increase on the specialist palliative care access reported for the same decedent group ten years earlier. Compared to decedents with heart failure, increased odds of palliative care access was observed for decedents with cancer (OR 10.5; 95 % CI 9.1-12.2), renal failure (OR 1.5; 95 % CI 1.3-1.9), liver failure (OR 2.3; 95 % CI 1.7-3.3) or motor neurone disease (OR 4.5; 95 % CI 3.1-6.6). Living in major cities, being female, having a partner and living in a private residence was associated with increased odds of access to specialist palliative care. There is small but significant increase in access to specialist palliative care services in Western Australia, specifically in patients dying with non-cancer conditions.

Intrathecal infusions for intractable cancer pain: A qualitative study of the impact on a case series of patients and caregivers

PubMed Central

Hawley, Philippa; Beddard-Huber, Elizabeth; Grose, Cameron; McDonald, William; Lobb, Daphne; Malysh, Louise

2009-01-01

BACKGROUND: The need for intrathecal infusion in a palliative care setting is infrequent. Despite established efficacy, safety and cost effectiveness, this is considered an ‘extraordinary measure’ in Canada. Patients requiring this approach are not typical palliative care patients, having shorter and more uncertain life expectancies. OBJECTIVES: The present study is a qualitative exploration of the impact of intrathecal pump implantation on cancer patients, and also the impact of the intervention on the staff caring for those patients. METHODS: Palliative care unit patients who received an implanted intrathecal pump or dome catheter for intractable cancer pain participated in multiple semistructured interviews. Doctors and nurses caring for each patient were also interviewed. Interviews were recorded and analyzed for themes. The study terminated when saturation was reached. RESULTS: Six patients participated, with up to three interviews each. Twenty-four staff interviews took place. Patients’ hopes and expectations were not always fully met, but the infusions had a profound positive effect on quality of life. Patients expressed anxiety about dependence on the device, and also on a few highly skilled individuals. Staff interviews revealed a significant impact on the ‘culture’ of the palliative care unit. Clear communication of the rationale for infusion was very important, as was regular education about infusion management. CONCLUSIONS: Implanted intrathecal infusion devices are a necessary part of a tertiary level cancer pain management service for the unfortunate minority with intractable pain. Practical recommendations for care are made for palliative care programs contemplating offering intrathecal infusions. PMID:19862372

Music therapy for palliative care: A realist review.

PubMed

McConnell, Tracey; Porter, Sam

2017-08-01

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review

PubMed Central

Gardiner, Clare; Ingleton, Christine; Ryan, Tony; Ward, Sue; Gott, Merryn

2016-01-01

Background: It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. Aim: To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. Design: A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. Data sources: The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. Results: A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. Conclusion: The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies. PMID:27670418

Timing of palliative care needs reporting and aggressiveness of care near the end of life in metastatic lung cancer: A national registry-based study.

PubMed

Goldwasser, François; Vinant, Pascale; Aubry, Régis; Rochigneux, Philippe; Beaussant, Yvan; Huillard, Olivier; Morin, Lucas

2018-05-09

Early integration of palliative care for patients with metastatic lung cancer improves their quality of life and survival and reduces the aggressiveness of care near the end of life. This study examined the association between the timing of palliative care needs reporting and the aggressiveness of end-of-life care. This retrospective cohort study used the French National Hospital Registry to identify all hospitalized adults (≥20 years old) who died of metastatic lung cancer in France between 2010 and 2013. It compared the use of care and treatments near the end of life as a function of the timing of the first reporting of palliative care needs. The use of chemotherapy and the use of invasive ventilation were defined as primary outcomes. Propensity score weighting was used to control for potential confounders. Among a total of 64,950 deceased patients with metastatic lung cancer, the reporting of palliative care needs was characterized as timely (from 91 to 31 days before death) for 26.3%, late (from 30 to 8 days before death) for 31.5%, and very late (from 7 to 0 days before death) for 12.8%. Palliative care needs were not reported for 19,106 patients (29.4%). Patients with timely reporting of palliative care needs had the earliest and most progressive decrease in the use of anticancer therapy. The use of invasive ventilation also increased with a delay in palliative care needs reporting. There is a clear association between the timing of palliative care needs reporting and the aggressiveness of care near the end of life. Cancer 2018. © 2018 American Cancer Society. © 2018 American Cancer Society.

Leadership Development Initiative: Growing Global Leaders… Advancing Palliative Care.

PubMed

Ferris, Frank D; Moore, Shannon Y; Callaway, Mary V; Foley, Kathleen M

2018-02-01

The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Developments in spiritual care education in German - speaking countries

PubMed Central

2014-01-01

Background This article examines spiritual care training provided to healthcare professionals in Germany, Austria and Switzerland. The paper reveals the current extent of available training while defining the target group(s) and teaching aims. In addition to those, we will provide an analysis of delivered competencies, applied teaching and performance assessment methods. Methods In 2013, an anonymous online survey was conducted among the members of the International Society for Health and Spiritual Care. The survey consisted of 10 questions and an open field for best practice advice. SPSS21 was used for statistical data analysis and the MAXQDA2007 for thematic content analysis. Results 33 participants participated in the survey. The main providers of spiritual care training are hospitals (36%, n = 18). 57% (n = 17) of spiritual care training forms part of palliative care education. 43% (n = 13) of spiritual care education is primarily bound to the Christian tradition. 36% (n = 11) of provided trainings have no direct association with any religious conviction. 64% (n = 19) of respondents admitted that they do not use any specific definition for spiritual care. 22% (n = 14) of available spiritual care education leads to some academic degree. 30% (n = 19) of training form part of an education programme leading to a formal qualification. Content analysis revealed that spiritual training for medical students, physicians in paediatrics, and chaplains take place only in the context of palliative care education. Courses provided for multidisciplinary team education may be part of palliative care training. Other themes, such as deep listening, compassionate presence, bedside spirituality or biographical work on the basis of logo-therapy, are discussed within the framework of spiritual care. Conclusions Spiritual care is often approached as an integral part of grief management, communication/interaction training, palliative care, (medical) ethics, psychological or religious counselling or cultural competencies. Respondents point out the importance of competency based spiritual care education, practical training and maintaining the link between spiritual care education and clinical practice. Further elaboration on the specifics of spiritual care core competencies, teaching and performance assessment methods is needed. PMID:24898431

The Accuracy of Physicians' Clinical Predictions of Survival in Patients With Advanced Cancer.

PubMed

Amano, Koji; Maeda, Isseki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Yamamoto, Ryo; Yamamoto, Naoki; Shishido, Hideki; Shimizu, Mie; Kawahara, Masanori; Aoki, Shigeru; Demizu, Akira; Goshima, Masahiro; Goto, Keiji; Gyoda, Yasuaki; Hashimoto, Kotaro; Otomo, Sen; Sekimoto, Masako; Shibata, Takemi; Sugimoto, Yuka; Morita, Tatsuya

2015-08-01

Accurate prognoses are needed for patients with advanced cancer. To evaluate the accuracy of physicians' clinical predictions of survival (CPS) and assess the relationship between CPS and actual survival (AS) in patients with advanced cancer in palliative care units, hospital palliative care teams, and home palliative care services, as well as those receiving chemotherapy. This was a multicenter prospective cohort study conducted in 58 palliative care service centers in Japan. The palliative care physicians evaluated patients on the first day of admission and followed up all patients to their death or six months after enrollment. We evaluated the accuracy of CPS and assessed the relationship between CPS and AS in the four groups. We obtained a total of 2036 patients: 470, 764, 404, and 398 in hospital palliative care teams, palliative care units, home palliative care services, and chemotherapy, respectively. The proportion of accurate CPS (0.67-1.33 times AS) was 35% (95% CI 33-37%) in the total sample and ranged from 32% to 39% in each setting. While the proportion of patients living longer than CPS (pessimistic CPS) was 20% (95% CI 18-22%) in the total sample, ranging from 15% to 23% in each setting, the proportion of patients living shorter than CPS (optimistic CPS) was 45% (95% CI 43-47%) in the total sample, ranging from 43% to 49% in each setting. Physicians tend to overestimate when predicting survival in all palliative care patients, including those receiving chemotherapy. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Piloting the role of a pharmacist in a community palliative care multidisciplinary team: an Australian experience

PubMed Central

2011-01-01

Background While the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs) by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service. Methods The study was undertaken (February March 2009-June 2010) in three phases. Development (Phase 1) involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3) of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs. Results The pharmacist screened most patients (88.4%, 373/422) referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52), and a variety of DRPs (113) were detected at this point, the most common being "patient requests drug information" (25%, 28/113) and "condition not adequately treated" (22%, 25/113). The pharmacist made 120 recommendations in relation to her interventions. Fifty percent of online survey respondents (10/20) had interacted 10 or more times with the pharmacist for advice. All felt that the pharmacist's role was helpful, improving their knowledge of the different medications used in palliative care. The six team members who participated in the focus group indicated that there were several benefits of the pharmacist's contributions towards medication screening and review. Conclusions The inclusion of a pharmacist in a community palliative care team lead to an increase in the medication-related knowledge and skills of its members, improved patients' medication management, and minimised related errors. The model of care created can potentially be duplicated by other palliative care services, although its cost-effectiveness was unable to be accurately tested within the study. PMID:22035160

Improving cancer patients' pain: the impact of the hospital specialist palliative care team.

PubMed

Jack, B; Hillier, V; Williams, A; Oldham, J

2006-12-01

Pain is reported to occur in the majority of patients with advanced cancer and is one of the main reasons for referral to a hospital specialist palliative care team. Yet despite this, there is a paucity of research into the impact the hospital specialist palliative care team has on pain control in patients. A non-equivalent control group design using a quota sample investigated 100 cancer patients who had been admitted to hospital for symptom control. Fifty patients received specialist hospital palliative care team intervention compared with 50 patients receiving traditional care. Outcome was assessed using the Palliative Care Assessment (PACA) tool on three occasions. There was no difference between the groups on the initial assessment and the results indicated that all cancer patients admitted to hospital had a significant improvement in their pain control. However, the patients who had the additional input of the palliative care team demonstrated a statistically significant greater improvement than the control group (P<0.001). Potential explanations are made for the results including the enhanced knowledge and skills of the hospital specialist palliative care team.

Spiritual care as a dimension of holistic care: a relational interpretation.

PubMed

Bush, Tony; Bruni, Nina

2008-11-01

This article reports on a phenomenological study undertaken to explore the meaning of spiritual care as described by a group of palliative care professionals. The research process was informed by van Manen's (1990) hermeneutic phenomenological approach. Eight palliative care professionals (nurses, complementary therapists and pastoral carers) were recruited from a community palliative care agency in Melbourne, Victoria, which provided home-based palliative care. All participants were female and came from diverse ethnic backgrounds. Data were collected by in-depth conversational interviews and were analyzed thematically. Two themes emerged: 'a living nexus between spiritual care, spirituality and holism' and 'a world of relationships'. The findings of the study point to the need for healthcare professionals to incorporate spiritual care guidelines into practice in order for palliative care to be truly representative of holistic health care.

Staff preparedness for providing palliative and end-of-life care in long-term care homes: Instrument development and validation.

PubMed

Chan, Helen Yl; Chun, Gloria Km; Man, C W; Leung, Edward Mf

2018-05-01

Although much attention has been on integrating the palliative care approach into services of long-term care homes for older people living with frailty and progressive diseases, little is known about the staff preparedness for these new initiatives. The present study aimed to develop and test the psychometric properties of an instrument for measuring care home staff preparedness in providing palliative and end-of-life care. A 16-item instrument, covering perceived knowledge, skill and psychological readiness, was developed. A total of 247 staff members of different ranks from four care homes participated in the study. Exploratory factor analysis using the principal component analysis extraction method with varimax rotation was carried out for initial validation. Known group comparison was carried out to examine its discriminant validity. Reliability of the instrument was assessed based on test-retest reliability of a subsample of 20 participants and the Cronbach's alpha of the items. Exploratory factor analysis showed that the instrument yielded a three-factor solution, which cumulatively accounted for 68.5% of the total variance. Three subscales, namely, willingness, capability and resilience, showed high internal consistency and test-retest reliability. It also showed good discriminant validity between staff members of professional and non-professional groups. This is a brief, valid and reliable scale for measuring care home staff preparedness for providing palliative and end-of-life care. It can be used to identify their concerns and training needs in providing palliative and end-of-life care, and as an outcome measure to evaluate the effects of interventional studies for capacity building in this regard. Geriatr Gerontol Int 2018; 18: 745-749. © 2018 Japan Geriatrics Society.

Effects of facilitated family case conferencing for advanced dementia: A cluster randomised clinical trial

PubMed Central

2017-01-01

Background Palliative care planning for nursing home residents with advanced dementia is often suboptimal. This study compared effects of facilitated case conferencing (FCC) with usual care (UC) on end-of-life care. Methods A two arm parallel cluster randomised controlled trial was conducted. The sample included people with advanced dementia from 20 Australian nursing homes and their families and professional caregivers. In each intervention nursing home (n = 10), Palliative Care Planning Coordinators (PCPCs) facilitated family case conferences and trained staff in person-centred palliative care for 16 hours per week over 18 months. The primary outcome was family-rated quality of end-of-life care (End-of-Life Dementia [EOLD] Scales). Secondary outcomes included nurse-rated EOLD scales, resident quality of life (Quality of Life in Late-stage Dementia [QUALID]) and quality of care over the last month of life (pharmacological/non-pharmacological palliative strategies, hospitalization or inappropriate interventions). Results Two-hundred-eighty-six people with advanced dementia took part but only 131 died (64 in UC and 67 in FCC which was fewer than anticipated), rendering the primary analysis under-powered with no group effect seen in EOLD scales. Significant differences in pharmacological (P < 0.01) and non-pharmacological (P < 0.05) palliative management in last month of life were seen. Intercurrent illness was associated with lower family-rated EOLD Satisfaction with Care (coefficient 2.97, P < 0.05) and lower staff-rated EOLD Comfort Assessment with Dying (coefficient 4.37, P < 0.01). Per protocol analyses showed positive relationships between EOLD and staff hours to bed ratios, proportion of residents with dementia and staff attitudes. Conclusion FCC facilitates a palliative approach to care. Future trials of case conferencing should consider outcomes and processes regarding decision making and planning for anticipated events and acute illness. Trial registration Australian New Zealand Clinical Trial Registry ACTRN12612001164886 PMID:28786995

Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

PubMed

Bernheim, Jan L; Distelmans, Wim; Mullie, Arsène; Ashby, Michael A

2014-12-01

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric.

PubMed

Kaye, Erica C; Abramson, Zachary R; Snaman, Jennifer M; Friebert, Sarah E; Baker, Justin N

2017-05-01

Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. PubMed ® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity. Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care and Human Rights: A Decade of Evolution in Standards.

PubMed

Ezer, Tamar; Lohman, Diederik; de Luca, Gabriela B

2018-02-01

Human rights standards to address palliative care have developed over the last decade. This article aims to examine key milestones in the evolution of human rights standards to address palliative care, relevant advocacy efforts, and areas for further growth. The article provides an analysis of human rights standards in the context of palliative care through the lens of the right to health, freedom from torture and ill treatment, and the rights of older persons and children. Significant developments include the following: 1) the first human rights treaty to explicitly recognize the right to palliative care, the Inter-American Convention on the Rights of Older Persons; 2) the first World Health Assembly resolution on palliative care; 3) a report by the UN Special Rapporteur on Torture with a focus on denial of pain treatment; 4) addressing the availability of controlled medicines at the UN General Assembly Special Session on the World Drug Problem. Development of human rights standards in relation to palliative care has been most notable in the context of the right to health, freedom from torture and ill treatment, and the rights of older persons. More work is needed in the context of the rights of children, and human rights treaty bodies are still not consistently addressing state obligations with regards to palliative care. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Attitudes of members of the German Society for Palliative Medicine toward complementary and alternative medicine for cancer patients.

PubMed

Conrad, A C; Muenstedt, K; Micke, O; Prott, F J; Muecke, R; Huebner, J

2014-07-01

A high proportion of cancer patients use complementary and alternative medicine (CAM). In oncology, risks of CAM are side effects and interactions. Our aim was to conduct a survey on professionals in palliative care regarding attitudes toward CAM. An internet-based survey with a standardized questionnaire was sent to all members of the German Society for Palliative Care. The questionnaire collected data on attitude toward CAM and experiences. Six hundred and ninety questionnaires (19 %) were returned (49 % physicians, 35 % nurses, 3 % psychologists). Acceptance of CAM is high (92 % for complementary and 54 % for alternative medicine). Most participants had already been asked on CAM by patients (95 %) and relatives (89 %). Forty-four percent already had used complementary methods and 5 % alternative methods. Only 21 % think themselves adequately informed. Seventy-four percent would use complementary methods in a patient with advanced tumor, and 62 % would use alternative therapy in patients if there was no other therapy. Even from those who are skeptical 45 % would treat a patient with alternative methods. In order to inform patients on CAM and to further patients' autonomy, evidence on benefits and harms of CAM must be provided. As awareness of risks from CAM is low and critical appraisal especially of alternative medicine missing, but interest on information on CAM is high, experts should provide evidence-based recommendations for CAM in palliative care to members of different professions. This could be done by a curriculum focusing on the most often used CAM methods.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

PubMed

Shahid, Shaouli; Taylor, Emma V; Cheetham, Shelley; Woods, John A; Aoun, Samar M; Thompson, Sandra C

2018-05-08

Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.

Patients' perception of types of errors in palliative care - results from a qualitative interview study.

PubMed

Kiesewetter, Isabel; Schulz, Christian; Bausewein, Claudia; Fountain, Rita; Schmitz, Andrea

2016-08-11

Medical errors have been recognized as a relevant public health concern and research efforts to improve patient safety have increased. In palliative care, however, studies on errors are rare and mainly focus on quantitative measures. We aimed to explore how palliative care patients perceive and think about errors in palliative care and to generate an understanding of patients' perception of errors in that specialty. A semistructured qualitative interview study was conducted with patients who had received at least 1 week of palliative care in an inpatient or outpatient setting. All interviews were transcribed verbatim and analysed according to qualitative content analysis. Twelve patients from two centers were interviewed (7 women, median age 63.5 years, range 22-90 years). Eleven patients suffered from a malignancy. Days in palliative care ranged from 10 to 180 days (median 28 days). 96 categories emerged which were summed up under 11 umbrella terms definition, difference, type, cause, consequence, meaning, recognition, handling, prevention, person causing and affected person. A deductive model was developed assigning umbrella terms to error-theory-based factor levels (definition, type and process-related factors). 23 categories for type of error were identified, including 12 categories that can be considered as palliative care specific. On the level of process-related factors 3 palliative care specific categories emerged (recognition, meaning and consequence of errors). From the patients' perspective, there are some aspects of errors that could be considered as specific to palliative care. As the results of our study suggest, these palliative care-specific aspects seem to be very important from the patients' point of view and should receive further investigation. Moreover, the findings of this study can serve as a guide to further assess single aspects or categories of errors in palliative care in future research.

Opinions of the Dutch public on palliative sedation: a mixed-methods approach

PubMed Central

van der Kallen, Hilde TH; Raijmakers, Natasja JH; Rietjens, Judith AC; van der Male, Alex A; Bueving, Herman J; van Delden, Johannes JM; van der Heide, Agnes

2013-01-01

Background Palliative sedation is defined as deliberately lowering a patient’s consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia. Aim To inform healthcare professionals about attitudes of the general public regarding palliative sedation. Design and setting A cross-sectional survey among members of the Dutch general public followed by qualitative interviews. Method One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed. Results In total, 22% of the responders indicated knowing the term ‘palliative sedation’. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient’s life (79%, P = 0.54). Conclusion Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options. PMID:24152482

Physician Reimbursement for Critical Care Services Integrating Palliative Care for Patients Who Are Critically Ill

PubMed Central

Nelson, Judith E.; Weissman, David E.; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Cortez, Therese B.; Curtis, J. Randall

2012-01-01

Patients with advanced illness often spend time in an ICU, while nearly one-third of patients with advanced cancer who receive Medicare die in hospitals, often with failed ICU care. For most, death occurs following the withdrawal or withholding of life-sustaining treatments. The integration of palliative care is essential for high-quality critical care. Although palliative care specialists are becoming increasingly available, intensivists and other physicians are also expected to provide basic palliative care, including symptom treatment and communication about goals of care. Patients who are critically ill are often unable to make decisions about their care. In these situations, physicians must meet with family members or other surrogates to determine appropriate medical treatments. These meetings require clinical expertise to ensure that patient values are explored for medical decision making about therapeutic options, including palliative care. Meetings with families take time. Issues related to the disease process, prognosis, and treatment plan are complex, and decisions about the use or limitation of intensive care therapies have life-or-death implications. Inadequate reimbursement for physician services may be a barrier to the optimal delivery of high-quality palliative care, including effective communication. Appropriate documentation of time spent integrating palliative and critical care for patients who are critically ill can be consistent with the Current Procedural Terminology codes (99291 and 99292) for critical care services. The purpose of this article is to help intensivists and other providers understand the circumstances in which integration of palliative and critical care meets the definition of critical care services for billing purposes. PMID:22396564

Palliative Care Physicians' Religious / World View and Attitude Towards Euthanasia: A Quantitative Study Among Flemish Palliative Care Physicians

PubMed Central

Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S

2009-01-01

Aims: To Study the religious and ideological views and practice of Palliative Care physician towards Euthanasia. Materials and Methods: An anonymous self administered questionnaire approved by Flemish Palliative Care Federation and its ethics steering group was sent to all physicians(n-147) working in Flemish Palliative Care. Questionnaire consisted of three parts. In first part responded were requested to provide demographic information. In second part the respondents were asked to provide information concerning their religion or world view through several questions enquiring after religious or ideological affiliation, religious or ideological self-definition, view on life after death, image of God, spirituality, importance of rituals in their life, religious practice, and importance of religion in life. The third part consisted of a list of attitudinal statements regarding different treatment decisions in advanced disease on which the respondents had to give their opinion using a five-point Likert scale.99 physician responded. Results: We were able to distinguish four clusters: Church-going physicians, infrequently church-going physicians, atheists and doubters. We found that like the Belgian general public, many Flemish palliative care physicians concoct their own religious or ideological identity and feel free to drift away from traditional religious and ideological authorities. Conclusions: In our research we noted that physicians who have a strong belief in God and express their faith through participation in prayer and rituals, tend to be more critical toward euthanasia. Physicians who deny the existence of a transcendent power and hardly attend religious services are more likely to approve of euthanasia even in the case of minors or demented patients. In this way this study confirms the influence of religion and world view on attitudes toward euthanasia. PMID:20606855

Results of a transparent expert consultation on patient and public involvement in palliative care research.

PubMed

Daveson, Barbara A; de Wolf-Linder, Susanne; Witt, Jana; Newson, Kirstie; Morris, Carolyn; Higginson, Irene J; Evans, Catherine J

2015-12-01

Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking. To determine an optimal user-involvement model for palliative care research. We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings. Participants involved in palliative care research were invited to a global research institute, UK. A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility. For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research. © The Author(s) 2015.

Results of a transparent expert consultation on patient and public involvement in palliative care research

PubMed Central

Daveson, Barbara A; de Wolf-Linder, Susanne; Witt, Jana; Newson, Kirstie; Morris, Carolyn; Higginson, Irene J; Evans, Catherine J

2015-01-01

Background: Support and evidence for patient, unpaid caregiver and public involvement in research (user involvement) are growing. Consensus on how best to involve users in palliative care research is lacking. Aim: To determine an optimal user-involvement model for palliative care research. Design: We hosted a consultation workshop using expert presentations, discussion and nominal group technique to generate recommendations and consensus on agreement of importance. A total of 35 users and 32 researchers were approached to attend the workshop, which included break-out groups and a ranking exercise. Descriptive statistical analysis to establish consensus and highlight divergence was applied. Qualitative analysis of discussions was completed to aid interpretation of findings. Setting/participants: Participants involved in palliative care research were invited to a global research institute, UK. Results: A total of 12 users and 5 researchers participated. Users wanted their involvement to be more visible, including during dissemination, with a greater emphasis on the difference their involvement makes. Researchers wanted to improve productivity, relevance and quality through involvement. Users and researchers agreed that an optimal model should consist of (a) early involvement to ensure meaningful involvement and impact and (b) diverse virtual and face-to-face involvement methods to ensure flexibility. Conclusion: For involvement in palliative care research to succeed, early and flexible involvement is required. Researchers should advertise opportunities for involvement and promote impact of involvement via dissemination plans. Users should prioritise adding value to research through enhancing productivity, quality and relevance. More research is needed not only to inform implementation and ensure effectiveness but also to investigate the cost-effectiveness of involvement in palliative care research. PMID:25931336

Growing Pains: Palliative Care Making Gains

Cancer.gov

Palliative care has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care. The availability and role of palliative care varies tremendously, but acceptance among oncologists and other clinicians has never been greater.

Impact of a volunteer companion program on nursing students' knowledge and concerns related to palliative care.

PubMed

Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann

2006-02-01

Deficiencies in end-of-life education may explain nursing students' reports of feeling anxious and unqualified to care for dying patients. A volunteer Palliative Care Companion program was developed to provide undergraduate nursing students with an experiential learning opportunity by spending time with dying patients and their families. To evaluate the impact of the Palliative Care Companion program on nursing students' knowledge, attitudes, and concerns about providing palliative care, and to describe companion students' volunteer activities. Quasiexperimental controlled pretest-posttest design. Fifty-two undergraduate nursing students (32 companion students, 20 controls) at a midwestern U.S. university with an affiliated hospital-based palliative care service. All participants completed the Palliative Care Quiz for Nurses, Attitudes Toward Palliative Care, and Concern About Caring for Dying Patients questionnaires at the beginning and end of the semester. Companion subjects also kept a journal describing their palliative care experiences. Attitude scores were not analyzed because of poor internal consistency of the questionnaire. Changes in scores on knowledge items did not reach significance. Concern scores decreased significantly from pretest to posttest in the companion group. After adjusting for pretest concern score, there was a trend toward lower concern score in the companion group compared to controls (p=0.07). Companion students' journals described activities including visiting patients, viewing end-of-life videos, attending educational and public lectures, independent reading, and making bereavement phone calls to family members. The Palliative Care Companion program did not produce significant improvements in knowledge and concerns compared to controls, but companion students described their participation as a meaningful learning experience.

Adaptation and evaluation of the Family Involvement and Alienation Questionnaire for use in the care of older people, psychiatric care, palliative care and diabetes care.

PubMed

Ewertzon, Mats; Alvariza, Anette; Winnberg, Elisabeth; Leksell, Janeth; Andershed, Birgitta; Goliath, Ida; Momeni, Pardis; Kneck, Åsa; Skott, Maria; Årestedt, Kristofer

2018-03-31

To adapt the Family Involvement and Alienation Questionnaire (FIAQ) for use in the care of older people, psychiatric care, palliative care and diabetes care and to evaluate its validity and reliability. Involvement in the professional care has proven to be important for family members. However, they have described feelings of alienation in relation to how they experienced the professionals' approach. To explore this issue, a broad instrument that can be used in different care contexts is needed. A psychometric evaluation study, with a cross-sectional design. The content validity of the FIAQ was evaluated during 2014 by cognitive interviews with 15 family members to adults in different care contexts. Psychometric evaluation was then conducted (2015-2016). A sample of 325 family members participated, 103 of whom in a test-retest evaluation. Both parametric and non-parametric methods were used. The content validity revealed that the questionnaire was generally understood and considered to be relevant and retrievable by family members in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. Furthermore, the FIAQ (Revised), demonstrated satisfactory psychometric properties in terms of data quality, homogeneity, unidimensionality (factor structure), internal consistency and test-retest reliability. The study provides evidence that the FIAQ (Revised) is reliable and valid for use in further research and in quality assessment in the contexts of the care of older people, psychiatric care, palliative care and diabetes care. © 2018 John Wiley & Sons Ltd.

A service evaluation of an integrated model of palliative care of cystic fibrosis.

PubMed

Bourke, Stephen J; Booth, Zoe; Doe, Simon; Anderson, Alan; Rice, Sarah; Gascoigne, Alistair; Quibell, Rachel

2016-07-01

Patients with advanced cystic fibrosis have severe symptoms with a complex trajectory of exacerbations and recovery. They are often awaiting lung transplantation, and many die without receiving specialist palliative care. We introduced an integrated model whereby palliative specialists joined the cystic fibrosis team to provide palliative care in parallel with standard care. A service evaluation of this model of care was undertaken in a prospective case series documenting symptoms and outcomes, the views of the cystic fibrosis team and the experience of the palliative specialists. Over 3 years, 28 (10%) of 282 patients attending the cystic fibrosis centre had specialist palliative care. They had advanced lung disease (mean forced expiratory volume in 1 s (FEV1) = 0.86 L (25% predicted)), and 17 died: 6 were on a transplant waiting list at death; 10 were unsuitable and 1 died post transplantation. All who died over these 3 years had specialist palliative care. Four patients had successful transplants. Assessment showed a high prevalence of breathlessness, cough, pain, vomiting and fatigue, with a significant impact on daily life. The cystic fibrosis team rated this model of care highly, felt that palliative care should be members of the team, and thought that patients had found it helpful. The palliative specialists gained knowledge of cystic fibrosis, found it beneficial to meet patients earlier in the disease, and identified unmet needs in managing bereavement and the effects of deaths on other patients with cystic fibrosis. This model has been successful in overcoming the difficulties in access to specialist palliative care for patients with cystic fibrosis. © The Author(s) 2016.

Evaluation of Knowledge Among Interns in a Medical College Regarding Palliative Care in People Living with HIV/AIDS and the Impact of a Structured Intervention.

PubMed

Valsangkar, Sameer; Bodhare, Trupti N; Pande, Shripad B; Bele, Samir D; Rao, B Sitarama

2011-01-01

The evolving nature of palliative care and its renewed role in people living with HIV/AIDS (PLWHA) in the post-HAART (highly active anti-retroviral therapy) era warrants an evaluation of the present curriculum in medical under graduates. The objectives are(1) to measure the existing knowledge regarding palliative care and its application to PLWHA among medical interns and (2) to measure the impact of a structured intervention on knowledge dimensions. Interventional repeated measures study. A convenience sample of 106 interns in the medical college completed a pre-test assessment and a post-test assessment following a structured intervention for evaluation and comparison of knowledge over three dimensions which were (1) knowledge of palliative care and its application in PLWHA, (2) medical symptoms in PLWHA requiring palliative care and (3) psychosocial needs in PLWHA requiring palliative care. The mean scores on knowledge showed a consistent increase after the structured intervention and Student's t-test was significant across three dimensions of knowledge of palliative care and its application (t=9.12, P value <0.001), medical symptoms in PLWHA requiring palliative care (t=12.72, P value <0.001) and psychosocial needs in PLWHA (t=11.14, P value <0.001). In spite of the unique challenges presented by the varying course of illness in PLWHA and the variety of needs on the medical, psychosocial and family dimensions, a structured approach and an integrated course curriculum involving principles of both primary and palliative care principles will improve the efficiency of the undergraduate medical education program and enable delivery of effective palliative care interventions and improve quality of life in PLWHA.

How integrated are neurology and palliative care services? Results of a multicentre mapping exercise.

PubMed

van Vliet, Liesbeth M; Gao, Wei; DiFrancesco, Daniel; Crosby, Vincent; Wilcock, Andrew; Byrne, Anthony; Al-Chalabi, Ammar; Chaudhuri, K Ray; Evans, Catherine; Silber, Eli; Young, Carolyn; Malik, Farida; Quibell, Rachel; Higginson, Irene J

2016-05-10

Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson's Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9-88 MND, 3-25 Parkinsonism, and 0-5 MS). This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness.

Global warming in the palliative care research environment: adapting to change.

PubMed

Fainsinger, R L

2008-06-01

Advocates of palliative care research have often described the cold and difficult environment that has constrained the development of research internationally. The development of palliative care research has been slow over the last few decades and has met with resistance and sometimes hostility to the idea of conducting research in 'vulnerable populations'. The seeds of advocacy for research can be found in palliative care literature from the 1980s and early 1990s. Although we have much to do, we need to recognize that palliative care research development has come a long way. Of particular note is the development of well-funded collaboratives that now exist in Europe, Canada, Australia and the USA. The European Association for Palliative Care and the International Association for Hospice and Palliative Care has recognized the need to develop and promote global research initiatives, with a special focus on developing countries. Time is needed to develop good research evidence and in a more complex healthcare environment takes increasingly more resources to be productive. The increased support (global warming) evident in the increased funding opportunities available to palliative care researchers in a number of countries brings both benefits and challenges. There is evidence that the advocacy of individuals such as Kathleen Foley, Neil MacDonald, Balfour Mount, Vittorio Ventafridda, Robert Twycross and Geoff Hanks is now providing fertile ground and a much friendlier environment for a new generation of interdisciplinary palliative care research. We have achieved many of the goals necessary to avoid failure of the 'palliative care experiment', and need to accept the challenge of our present climate and adapt and take advantage of the change.