... Patients and Families Take the Quiz What Is Palliative Care? Definition Palliative care (pronounced pal-lee-uh- ... more control over your care. A Partnership of Palliative Care Team, Patient and Family Palliative care teams ...
... Feeding Your 1- to 2-Year-Old Palliative Care KidsHealth > For Parents > Palliative Care A A A ... decisions about their child's care. Who Needs Palliative Care? Any child who has a serious, complex, or ...
Mercadante, S; Genovese, G; Kargar, J A; Maddaloni, S; Roccella, S; Salvaggio, L; Simonetti, M T
Home care is greatly expanding because of the savings it offers by avoiding unnecessary hospitalization and also because patients benefit from being in their own home environments. Since 1988, Societa Assistenza Malato Oncologico Terminale (SAMOT) has organized a pain relief and home palliative care unit for terminal cancer patients. Objectives, difficulties, protocols, and achievements of 4 years of experience were examined, and the findings of the various years were compared. Our results suggest that considerable progress has been made in home palliative care. There are still social and cultural difficulties to overcome, however.
Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms ... of the medical treatments you're receiving. Hospice care, care at the end of life, always includes ...
... Looking for Health Lessons? Visit KidsHealth in the Classroom What Other Parents Are Reading Is Your Child ... a team of medical personnel — including doctors, pain management specialists, nurses, social workers, and therapists — palliative care ...
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 ...
Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Shoji, Ayaka; Chiba, Yurika; Miyazaki, Tamana; Tsuneto, Satoru; Shima, Yasuo
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.
... emotional distress. A special type of care called palliative care is available to help you get relief from these and other symptoms. You can receive palliative care at any stage of your serious illness, including ...
Geoghan, Darlene A
Palliative care is care that is given to patients and their significant others who are experiencing life-threatening or life-altering illnesses by providing emotional, spiritual, and physical support. Patients can continue to receive aggressive medical treatment while receiving palliative care and recovery is possible. Pain control is a top priority in palliative care. Non-pharmacological interventions have also been shown to be effective in palliative care as well. Palliative care is truly a holistic, collaborative practice engaging many disciplines in the care of the patient and their love ones.
Khan, Robyna Irshad
Pakistan is a developing country of South East Asia, with all the incumbent difficulties currently being faced by the region. Insufficient public healthcare facilities, poorly regulated private health sector, low budgetary allocation for health, improper priority setting while allocating limited resources, have resulted essentially in an absence of palliative care from the healthcare scene. Almost 90% of healthcare expenditure is out of the patient's pocket with more than 45% of population living below the poverty line. All these factors have a collective potential to translate into an end-of-life care disaster as a large percentage of population is suffering from chronic debilitating/terminal diseases. So far, such a disaster has not materialised, the reason being a family based culture emphasising the care of the sick and old at home, supported by religious teachings. This culture is not limited to Pakistan but subsists in the entire sub-continent, where looking after the sick/elderly at home is considered to be the duty of the younger generation. With effects of globalisation, more and more older people are living alone and an increasing need for palliative care is being realised. However, there does not seem to be any plan on the part of the public or private sectors to initiate palliative care services. This paper seeks to trace the social and cultural perspectives in Pakistan with regards to accessing palliative care in the context of healthcare facilities available.
Johnston, Donna L.; Hentz, Tracy A.; Friedman, Debra L.
Pediatric palliative care provides benefit to children living with life-threatening or terminal conditions. Palliative care should be available to all seriously ill children. Palliative care includes the treatment of symptoms such as pain, nausea, dyspnea, constipation, anorexia, and sialorrhea. This care can occur in a variety of settings, from home to hospice to hospital, and must include bereavement care and follow up after the death of a child. There are many challenges in pediatric palliative care, but continued research into this important area of pediatrics will lead to improvements in the care of children with life-threatening illnesses. PMID:23118638
Vater, Laura B; Rebesco, Gina; Schenker, Yael; Torke, Alexia M; Gramelspacher, Gregory
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.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean
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
Moody, Karen; Siegel, Linda; Scharbach, Kathryn; Cunningham, Leslie; Cantor, Rabbi Mollie
Progress in pediatric palliative care has gained momentum, but there remain significant barriers to the appropriate provision of palliative care to ill and dying children, including the lack of properly trained health care professionals, resources to finance such care, and scientific research, as well as a continued cultural denial of death in children. This article reviews the epidemiology of pediatric palliative care, special communication concerns, decision making, ethical and legal considerations, symptom assessment and management, psychosocial issues, provision of care across settings, end-of-life care, and bereavement. Educational and supportive resources for health care practitioners and families, respectively, are included.
Wiencek, Clareen; Coyne, Patrick
To provide an overview of the four major palliative care delivery models: ambulatory clinics, home-based programs, inpatient palliative care units, and inpatient consultation services. The advantages and disadvantages of each model and the generalist and specialist roles in palliative care will be discussed. Literature review. The discipline of palliative care continues to experience growth in the number of programs and in types of delivery models. Ambulatory- and home-based models are the newest on the scene. Nurses caring for oncology patients with life-limiting disease should be informed about these models for optimal impact on patient care outcomes. Oncology nurses should demonstrate generalist skills in the care of the seriously ill and access specialist palliative care providers as warranted by the patient's condition.
... and Families Take the Quiz What Is Pediatric Palliative Care? Pediatric Palliative care (pronounced pal-lee-uh-tiv) is specialized ... for both the child and the family. Pediatric palliative care is provided by a team of doctors, ...
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
Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David
Background: The evolution of the provision of palliative care specialised services is important for planning and evaluation. Aim: 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. Design and setting: 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. Results: 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. Conclusion: 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
Daveson, Barbara A; de Wolf-Linder, Susanne; Witt, Jana; Newson, Kirstie; Morris, Carolyn; Higginson, Irene J; Evans, Catherine J
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
This paper shows how palliative care developed as a reaction to the compartimentalized technical approach of modern medicine. But what does it mean if we say palliative care wants to treat patients as whole persons? A few pitfalls need to avoided. All disciplines involved in palliative care should act within the limits of their own specific professional role. Physicians and nurses should certainly not force patients into spiritual or religious discussions or practices. They should understand that religion and spirituality also influence the ethical (and thus medical) choices people make, respect their own conscience and worldview too and cultivate conscious compassion. PMID:21811369
Ewert, Benjamin; Hodiamont, Farina; van Wijngaarden, Jeroen; Payne, Sheila; Groot, Marieke; Hasselaar, Jeroen; Menten, Johann; Radbruch, Lukas
Background Empirical evidence suggests that integrated palliative care (IPC) increases the quality of care for palliative patients and supports professional caregivers. Existing IPC initiatives in Europe vary in their design and are hardly comparable. InSuP-C, a European Union research project, aimed to build a taxonomy of IPC initiatives applicable across diseases, healthcare sectors and systems. Methods The taxonomy of IPC initiatives was developed in cooperation with an international and multidisciplinary focus group of 18 experts. Subsequently, a consensus meeting of 10 experts revised a preliminary taxonomy and adopted the final classification system. Results Consisting of eight categories, with two to four items each, the taxonomy covers the process and structure of IPC initiatives. If two items in at least one category apply to an initiative, a minimum level of integration is assumed to have been reached. Categories range from the type of initiative (items: pathway, model or guideline) to patients’ key contact (items: non-pc specialist, pc specialist, general practitioner). Experts recommended the inclusion of two new categories: level of care (items: primary, secondary or tertiary) indicating at which stage palliative care is integrated and primary focus of intervention describing IPC givers’ different roles (items: treating function, advising/consulting or training) in the care process. Conclusions Empirical studies are required to investigate how the taxonomy is used in practice and whether it covers the reality of patients in need of palliative care. The InSuP-C project will test this taxonomy empirically in selected initiatives using IPC. PMID:26647043
Provinciali, Leandro; Tarquini, Daniela; De Falco, Fabrizio A; Carlini, Giulia; Zappia, Mario; Toni, Danilo
Palliative care in neurology is characterized by the need of taking into account some distinguishing features which supplement and often differ from the general palliative approach to cancer or to severe organ failures. Such position is emphasized by a new concept of palliative assistance which is not limited to the "end of life" stage, as it was the traditional one, but is applied along the entire course of progressive, life-limiting, and disabling conditions. There are various reasons accounting for a differentiation of palliative care in neurology and for the development of specific expertise; the long duration of the advanced stages of many neurological diseases and the distinguishing features of some clinical problems (cognitive disorders, psychic disorders, etc.), in addition to the deterioration of some general aspects (nutrition, etc.), make the general criteria adopted for cancer, severe respiratory, hepatic or renal failures and heart failure inadequate. The neurological diseases which could benefit from the development of a specific palliative approach are dementia, cerebrovascular diseases, movement disorders, neuromuscular diseases, severe traumatic brain injury, brain cancers and multiple sclerosis, as well as less frequent conditions. The growing literature on palliative care in neurology provides evidence of the neurological community's increasing interest in taking care of the advanced and terminal stages of nervous system diseases, thus encouraging research, training and updating in such direction. This document aims to underline the specific neurological requirements concerning the palliative assistance.
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
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.
Klick, Jeffrey C; Hauer, Julie
Palliative care has always been a part of the care of children. It includes any intervention that focuses on relieving suffering, slowing the progression of disease, and improving quality of life at any stage of disease. In addition, for even the child with the most unpredictable disease, there are predictable times in this child's life when the child, family, and care team will be suffering in ways that can be mitigated by specific interventions. Rather than defining pediatric palliative care in terms of a patient base, severity of disease, or even a general philosophy of care, palliative care can best be understood as a specific set of tasks directed at mitigating suffering. By understanding these tasks; learning to identify predictable times and settings of suffering; and learning to collaborate with multidisciplinary specialists, use communication skills, and identify clinical resources, the pediatrician can more effectively support children with life-threatening illnesses and their families. In this article, we define palliative care as a focus of care integrated in all phases of life and as a set of interventions aimed at easing suffering associated with life-threatening conditions. We detail an approach to these interventions and discuss how they can be implemented by the pediatrician with the support of specialists in hospice and palliative medicine. We discuss common and predictable times of suffering when these interventions become effective ways to treat suffering and improve quality of life. Finally, we discuss those situations that pediatricians most commonly and intensely interface with palliative care-the care of the child with complex, chronic conditions and severe neurologic impairment (SNI).
... Questions Frequently Asked Questions: What is pediatric palliative care? Pediatric palliative (pal-lee-uh-tiv) care is ... for patients and families. Who provides pediatric palliative care? Every palliative care team is different. The team ...
Gatrad, Rashid; Panesar, Sukhmeet Singh; Brown, Erica; Notta, Hardev; Sheikh, Aziz
This article provides an overview of the palliative care needs of Sikh patients. It describes the basis of Sikh beliefs and practices and discusses practical aspects of caring for terminally ill Sikh patients and their families. Issues before and after death are considered and the importance of an individual approach is highlighted.
... in Value-Based Payment and Contracting Apply Now Palliative Care in the Home: A Guide to Program ... Now available in the CAPC Shop! Learn more Palliative Care Leadership Centers™ (PCLC) - Now expanded to community ...
e-Health has the potential to improve pediatric palliative care. e-Health initiatives use the Internet or health information technology to improve quality of care and have the potential to decrease costs by reducing medical errors, reducing duplication of services, improving access to diagnostic and laboratory results, and improving communication between providers and patients, and so on. The majority of e-health initiatives are for adults and only a limited amount of evidence exists in the literature on e-health interventions in palliative care that are focused on pediatrics. To explore what role e-health could play in pediatric palliative care programs, this article aims to describe the Internet use in general in the United States and in palliative care, describe the use of health information technology in general in the United States and in palliative care, and suggest areas in pediatric palliative care that might benefit from e-health interventions.
Groenvold, Mogens; Adsersen, Mathilde; Hansen, Maiken Bang
Aims The aim of the Danish Palliative Care Database (DPD) is to monitor, evaluate, and improve the clinical quality of specialized palliative care (SPC) (ie, the activity of hospital-based palliative care teams/departments and hospices) in Denmark. Study population The study population is all patients in Denmark referred to and/or in contact with SPC after January 1, 2010. Main variables The main variables in DPD are data about referral for patients admitted and not admitted to SPC, type of the first SPC contact, clinical and sociodemographic factors, multidisciplinary conference, and the patient-reported European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care questionnaire, assessing health-related quality of life. The data support the estimation of currently five quality of care indicators, ie, the proportions of 1) referred and eligible patients who were actually admitted to SPC, 2) patients who waited <10 days before admission to SPC, 3) patients who died from cancer and who obtained contact with SPC, 4) patients who were screened with European Organisation for Research and Treatment of Cancer Quality of Life Questionaire-Core-15-Palliative Care at admission to SPC, and 5) patients who were discussed at a multidisciplinary conference. Descriptive data In 2014, all 43 SPC units in Denmark reported their data to DPD, and all 9,434 cancer patients (100%) referred to SPC were registered in DPD. In total, 41,104 unique cancer patients were registered in DPD during the 5 years 2010–2014. Of those registered, 96% had cancer. Conclusion DPD is a national clinical quality database for SPC having clinically relevant variables and high data and patient completeness. PMID:27822111
Best, Megan; Butow, Phyllis; Olver, Ian
A previous survey of the Multinational Association of Supportive Care in Cancer (MASCC) members found low frequency of spiritual care provision. We hypothesized that physicians with special training in palliative medicine would demonstrate an increased sense of responsibility for and higher self-reported adequacy to provide spiritual care to patients than health professionals with general training. We surveyed members of the Australian and New Zealand Palliative Medicine Society (ANZSPM) to ascertain their spiritual care practices. We sent 445 e-mails on four occasions, inviting members to complete the online survey. Tabulated results were analyzed to describe the results. One hundred and fifty-eight members (35.5 %) responded. Physicians working primarily in palliative care comprised the majority (95 %) of the sample. Significantly more of the ANZSPM than MASCC respondents had previously received training in spiritual care and had pursued training in the previous 2 years. There was a significant difference between the two groups with regard to interest in and self-reported ability to provide spiritual care. Those who believed it was their responsibility to provide spiritual care were more likely to have had training, feel they could adequately provide spiritual care, and were more likely to refer patients if they could not provide spiritual care themselves. Training in spiritual care was more common in healthcare workers who had received training in palliative care. ANZSPM members gave higher scores for both the importance of spiritual care and self-reported ability to provide it compared to MASCC members.
Çeliker, Mahmut Yaşar; Pagnarith, Yos; Akao, Kazumi; Sophearin, Dim; Sorn, Sokchea
Cancer care with curative intent remains difficult to manage in many resource-limited settings such as Cambodia. Cambodia has a small workforce with limited financial and health-care resources resulting in delayed diagnoses and availability of limited therapeutic tools. Thus, palliative care becomes the primary form of care in most cases. Although palliative care is becoming an integral part of medical care in developed countries, this concept remains poorly understood and utilized in developing countries. Angkor Hospital for Children serves a relatively large pediatric population in northern Cambodia. According to the modern definition of palliative care, approximately two-thirds of the patients admitted to the hospital were deemed candidates to receive palliative care. In an effort to develop a pediatric palliative care team utilizing existing resources and intensive training, our focus group recruited already existing teams with different health-care expertise and other motivated members of the hospital. During this process, we have also formed a palliative care training team of local experts to maintain ongoing palliative care education. Feedback from patients and health-care providers confirmed the effectiveness of these efforts. In conclusion, palliative and sustainable care was offered effectively in a resource-limited setting with adequately trained and motivated local providers. In this article, the steps and systems used to overcome challenges in Cambodia are summarized in the hope that our experience urges governmental and non-governmental agencies to support similar initiatives. PMID:28804708
Schaefer, Kristen G.; Chittenden, Eva H.; Sullivan, Amy M.; Periyakoil, Vyjeyanth S.; Morrison, Laura J.; Carey, Elise C.; Sanchez-Reilly, Sandra; Block, Susan D.
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
Carlson, Melissa D.A.; Barry, Colleen; Schlesinger, Mark; McCorkle, Ruth; Morrison, R. Sean; Cherlin, Emily; Herrin, Jeph; Thompson, Jennifer; Twaddle, Martha L.; Bradley, Elizabeth H.
Background The National Quality Forum (NQF) identified hospice services as a national priority area for healthcare quality improvement and endorsed a set of preferred practices for quality palliative and hospice care. This study reports the first national data regarding hospices’ self-reported implementation of the NQF preferred practices and identifies hospice characteristics associated with more comprehensive implementation. Methods We conducted a national cross-sectional survey of a random sample of hospices (n=591; response rate 84%) from September 2008 to November 2009. We evaluated the reported implementation of NQF preferred practices in the care of both patients and families. Results The range of reported implementation of individual NQF preferred practices among hospices was 45–97%. Twenty-one percent of hospices reported having implemented all patient-centered preferred practices, 26% all family-centered preferred practices, and 10% all patient and family-centered preferred practices. In adjusted analyses, large hospices (100 or more patients per day) were significantly more likely than small hospices (less than 20 patients per day) to report having implemented all patient-centered preferred practices (OR=2.46, 95%CI 1.24, 4.90) and all family-centered preferred practices (OR=1.88, 95%CI 1.02, 3.45). Similarly, chain-affiliated hospices were significantly more likely than free-standing hospices to report having implemented all patient-centered preferred practices (OR=2.45, 95%CI 1.23, 4.87) and all family-centered preferred practices (OR=1.85, 95%CI 1.01, 3.41). Conclusions Hospices’ reported implementation of individual preferred practices for palliative and hospice care quality was high; however, reported comprehensive implementation of preferred practices was rare and may be difficult to achieve for small, free-standing hospices. PMID:21685811
Fainsinger, R. L.; Bruera, E.; MacMillan, K.
PROBLEM BEING ADDRESSED: Access to palliative care in Edmonton has been hampered by uneven development, poor distribution of services, and more recently, economic restraints. Family physicians' involvement in palliative care has been hindered by the variety of access points, poor coordination, and inadequate reimbursement for time-consuming and difficult patient care situations. OBJECTIVE OF PROGRAM: To provide high-quality palliative care throughout Edmonton in all settings, with patients able to move easily throughout the components of the program; to lower costs by having fewer palliative care patients die in acute care facilities; and to ensure that family physicians receive support to care for most patients at home or in palliative care units. MAIN COMPONENTS OF PROGRAM: The program includes a regional office, home care, and consultant teams. A specialized 14-bed palliative care unit provides acute care. Family physicians are the primary caregivers in the 56 palliative continuing care unit beds. CONCLUSIONS: This program appears to meet most of the need for palliative care in Edmonton. Family physicians, with support from consulting teams, have a central role. Evaluation is ongoing; an important issue is how best to support patients dying at home. Images p1984-a p1986-a PMID:9386885
Ewert, Benjamin; Hodiamont, Farina; van Wijngaarden, Jeroen; Payne, Sheila; Groot, Marieke; Hasselaar, Jeroen; Menten, Johann; Radbruch, Lukas
Empirical evidence suggests that integrated palliative care (IPC) increases the quality of care for palliative patients and supports professional caregivers. Existing IPC initiatives in Europe vary in their design and are hardly comparable. InSuP-C, a European Union research project, aimed to build a taxonomy of IPC initiatives applicable across diseases, healthcare sectors and systems. The taxonomy of IPC initiatives was developed in cooperation with an international and multidisciplinary focus group of 18 experts. Subsequently, a consensus meeting of 10 experts revised a preliminary taxonomy and adopted the final classification system. Consisting of eight categories, with two to four items each, the taxonomy covers the process and structure of IPC initiatives. If two items in at least one category apply to an initiative, a minimum level of integration is assumed to have been reached. Categories range from the type of initiative (items: pathway, model or guideline) to patients' key contact (items: non-pc specialist, pc specialist, general practitioner). Experts recommended the inclusion of two new categories: level of care (items: primary, secondary or tertiary) indicating at which stage palliative care is integrated and primary focus of intervention describing IPC givers' different roles (items: treating function, advising/consulting or training) in the care process. Empirical studies are required to investigate how the taxonomy is used in practice and whether it covers the reality of patients in need of palliative care. The InSuP-C project will test this taxonomy empirically in selected initiatives using IPC. 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/
Kalies, Helen; Schöttmer, Rieke; Simon, Steffen T; Voltz, Raymond; Crispin, Alexander; Bausewein, Claudia
Little is known about palliative care professionals' attitudes towards guidelines. In 2015, the German Association for Palliative Medicine (DGP) published an evidence based guideline for palliative care in adults with incurable cancer. Before publication we conducted a national survey among members of the DGP to detect possible barriers and facilitators for its implementation. The aim of the present publication was to evaluate critical attitudes and beliefs which could hinder the effective implementation of the new guideline and to evaluate differences within professional groups and medical specialisations. This web-based online survey was addressed to all members of the DGP in summer 2014. Twenty-one questions concerning attitudes and beliefs towards guidelines were a priori developed to represent the following topics: scepticism regarding the quality of guidelines, doubts about the implementation of guidelines, restrictions in treatment options through guidelines, discrepancy between palliative care values and guidelines. Differences within professions and specialisations were tested using Kruskal-Wallis tests. All 4.786 members with known email address were invited, 1.181 followed the link, 1.138 began to answer the questionnaire and 1.031 completed the questionnaire. More than half of participating members were physicians and one third nurses. Scepticism regarding the quality of existing guidelines was high (range 12.8-73.2%). Doubts regarding practical aspects of guidelines were less prevalent but still high (range 21.8-57.6%). About one third (range 5.4-31.4%) think that guidelines restrict their treatment options. In addition, 38.8% believed that guidelines are a kind of cookbook and restrict the flexibility of individual patient care. The majority saw no or little discrepancy between palliative care values and guidelines (range 68.4-82.6%). There were relatively small but significant differences between professions and specialisations. The person
Pastrana, Tania; Eisenchlas, Jorge; Centeno, Carlos; De Lima, Liliana
Several studies have been published reporting the status of palliative care in different countries of Latin America, but no studies have been published on the status of the discipline across the whole region. This article provides a summary of the current situation as reported in the Atlas of Palliative Care recently completed by the Latin American Association for Palliative Care. The aim of this project was to collect information on the degree of palliative care development, help create a network, and influence the progress of palliative care across Latin America. The Atlas provides an overview of the status of palliative care in Latin America according to the World Health Organization public health strategy for palliative care: policies, drug availability, education, and implementation of services. The results indicate that there is significant variation among countries in the region and that strategies to support and develop palliative care require tailored approaches to meet the needs of each. The information in this review gives a broad notion of the current status of palliative care in Latin America. The Atlas is expected to help the progress of palliative care and serve as a driver of the field in Latin America and other regions.
Teixeira, Carla Margarida; Carvalho, Ana Sofia; Hernández-Marrero, Pablo
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
Teruel, José L.; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando
Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m2). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital’s emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams. PMID:27417813
Teruel, José L; Rexach, Lourdes; Burguera, Victor; Gomis, Antonio; Fernandez-Lucas, Milagros; Rivera, Maite; Diaz, Alicia; Collazo, Sergio; Liaño, Fernando
Healthcare for patients with advanced chronic kidney disease (ACKD) on conservative treatment very often poses healthcare problems that are difficult to solve. At the end of 2011, we began a program based on the care and monitoring of these patients by Primary Care Teams. ACKD patients who opted for conservative treatment were offered the chance to be cared for mainly at home by the Primary Care doctor and nurse, under the coordination of the Palliative Care Unit and the Nephrology Department. During 2012, 2013, and 2014, 76 patients received treatment in this program (mean age: 81 years; mean Charlson age-comorbidity index: 10, and mean glomerular filtration rate: 12.4 mL/min/1.73 m²). The median patient follow-up time (until death or until 31 December 2014) was 165 days. During this period, 51% of patients did not have to visit the hospital's emergency department and 58% did not require hospitalization. Forty-eight of the 76 patients died after a median time of 135 days in the program; 24 (50%) died at home. Our experience indicates that with the support of the Palliative Care Unit and the Nephrology Department, ACKD patients who are not dialysis candidates may be monitored at home by Primary Care Teams.
Gonçalves, Ferraz; Mozes, Mónica; Saraiva, Isabel; Ramos, Cristina
In palliative care, gastrostomies are used to provide nutritional support or to decompress the bowel. To evaluate what happened to the patients monitored at our palliative care unit (PCU) who underwent gastrostomy between October 1994 and January 2005, a retrospective audit was made. The charts of 154 patients were reviewed. The most frequent reason why a patient underwent a gastrostomy was dysphagia due to head and neck and/or esophageal cancer. Only one patient underwent a drainage gastrostomy because of intestinal obstruction. Interventional radiology performed 96% of the gastrostomies. Early complications occurred in 53 patients (34%) who underwent the gastrostomy for feeding and the most common was local pain, usually mild. However, there was one death due to peritonitis, probably related with the procedure. Late complications also occurred in 53 patients and major complications occurred in 22 patients, the most common was extrusion. The median survival after the performance of the gastrostomy was 61 days (range 1 to 551 days). Nineteen patients (12%) survived 1 week or less, 28 (18%) between 8 and 30 days, 51 (33%) from 31 to 90 days, 53 (35%) 91 days or more, and one unknown. The patient who underwent a gastrostomy for bowel obstruction survived for only 7 days. One hundred and twenty-five patients (81%) died at the PCU, 26 (17%) at home, and four (3%) at other places.
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; McCarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
Objective: For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. Methods: A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. Results: The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. Conclusion: The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative. PMID:28241905
“If you want to travel quickly, go alone. But if you want to travel far, you must go together”. African proverb. The delivery of palliative care is often complex and always involves a group of people, the team, gathered around the patient and those who are close to them. Effective communication and functional responsive systems of care are essential if palliative care is to be delivered in a timely and competent way. Creating and fostering an effective team is one of the greatest challenges for providers of palliative care. Teams are organic and can be life giving or life sapping for their members. PMID:21811361
Singh, Tarvinder; Peters, Steven R; Tirschwell, David L; Creutzfeldt, Claire J
Substantial variability exists in the use of life-prolonging treatments for patients with stroke, especially near the end of life. This study explores patterns of palliative care utilization and death in hospitalized patients with stroke across the United States. Using the 2010 to 2012 nationwide inpatient sample databases, we included all patients discharged with stroke identified by International Classification of Diseases-Ninth Revision codes. Strokes were subclassified as ischemic, intracerebral, and subarachnoid hemorrhage. We compared demographics, comorbidities, procedures, and outcomes between patients with and without a palliative care encounter (PCE) as defined by the International Classification of Diseases-Ninth Revision code V66.7. Pearson χ(2) test was used for categorical variables. Multivariate logistic regression was used to account for hospital, regional, payer, and medical severity factors to predict PCE use and death. Among 395 411 patients with stroke, PCE was used in 6.2% with an increasing trend over time (P<0.05). We found a wide range in PCE use with higher rates in patients with older age, hemorrhagic stroke types, women, and white race (all P<0.001). Smaller and for-profit hospitals saw lower rates. Overall, 9.2% of hospitalized patients with stroke died, and PCE was significantly associated with death. Length of stay in decedents was shorter for patients who received PCE. Palliative care use is increasing nationally for patients with stroke, especially in larger hospitals. Persistent disparities in PCE use and mortality exist in regards to age, sex, race, region, and hospital characteristics. Given the variations in PCE use, especially at the end of life, the use of mortality rates as a hospital quality measure is questioned. © 2017 The Authors.
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
Muir, J. Cameron; Krammer, Lisa M.; von Gunten, Charles F.
Describes the elements of a program in hospice and palliative medicine that may serve as a model of an effective system of physician education. Topics for the palliative-care curriculum include hospice medicine, breaking bad news, pain management, the process of dying, and managing personal stress. (JOW)
Restau, Jame; Green, Pamela
Most patients who receive terminal care in the intensive care setting die after withdrawing or limiting of life-sustaining measures provided in the intensive care setting. The integration of palliative care into the intensive care unit (ICU) provides care, comfort, and planning for patients, families, and the medical staff to help decrease the emotional, spiritual, and psychological stress of a patient's death. Quality measures for palliative care in the ICU are discussed along with case studies to demonstrate how this integration is beneficial for a patient and family. Integrating palliative care into the ICU is also examined in regards to the complex adaptive system.
"Nothing is more powerful than an idea whose time has come." (Victor Hugo) Originally referring to the beginning of the enlightenment (reconnaissance) of the French revolution the transcription of this words regarding to German palliative Care structures would mean a tremendous effort. The meaning of the new idea is a holistic kind of care for patients with a chronic disease at the end of their lives, so that they can die as most self determined as possible at a location of their choice. The special aim of palliative care, the need of interdisciplinary cooperation leading to multidisciplinary solutions is pointed out. The meaning of palliative care team as a team with special communication skills in between the team and with further cooperating partners is described. Communication in palliative care means more than telling facts.
1. Cervical cancer is the most frequent cancer in females and also the most frequent among female genital cancers. 2. Ever though the modality of diagnostic procedures for early detection has improved, in fact most of the patients present in the late stages, so the disease is already incurable, and palliative care is really needed. 3. Palliative care is needed not only for the terminally ill patients, but can be started at the time the cancer is diagnosed. 4. Palliative care is a multidisciplinary approach requiring teamwork. 5. Palliative care in Indonesia, especially in Dr. Soetomo Hospital, is a new modality in the fight against cancer, so we suffer many disadvantages, e.g., disability, limitation, lack of experience. However, such problems will stimulate the team to learn more.
Hui, David; Bruera, Eduardo
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, illness understanding, 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 also discuss how health-care systems and institutions need to tailor integration based on their resources, size, and the level of primary palliative care available.
Hui, David; Bruera, Eduardo
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
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.
Centeno, Carlos; Lynch, Thomas; Garralda, Eduardo; Carrasco, José Miguel; Guillen-Grima, Francisco; Clark, David
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
Knies, Andrea K; Hwang, David Y
Many neurocritically ill patients and their families have high amounts of palliative care needs. Multiple professional societies relevant to neurocritical care have released consensus statements on meeting palliative care needs in neuroscience intensive care units. In this review, the authors discuss the ongoing debate regarding what model of palliative care delivery is optimal, focus on the process of shared decision making during goals-of-care discussions, and briefly comment on transitions from intensive care to comfort care. Regardless of an institution's model of palliative care practice, every neurocritical care clinician should possess core competencies necessary to provide basic, integrative palliative care for neurocritically ill patients. Given the high proportion of neurocritically ill patients who lack decision-making capacity, communication skills that enable clinicians to facilitate shared decision making with patients' surrogates are of particular relevance, especially when the limitation of life support is in the discussion. High-quality decision aids to assist neurocritical care teams and surrogate decision makers during common goals-of-care discussions may have the potential for further promotion of best palliative care practices. Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.
Feio, Madalena; Sapeta, Paula
Xerostomia is the subjective feeling of mouth dryness, caused or not by function lowering of salivary glands, with decrease of saliva quality or quantity. It's a frequent symptom in palliative care patients and its prevalence is referred to be 60% to 88% in advanced and progressive oncological disease patients. Xerostomia has physical, social and psychological consequences. Saliva plays an important role in maintaining the best physiological conditions of mouth. Besides humidifying the oral cavity tissues, its lubricating properties help swallowing, talking and prevents other damages caused by mechanical and noxious microbiological agents. Xerostomia is caused by three basic mechanisms: factors that compromise the salivary centre, factors related to the autonomic stimulation or factors related to salivary glands themselves. The diagnosis is mainly clinical. Mouth condition must be thoroughly evaluated. If justified, a quantitative evaluation of saliva secretion, in rest and under stimulation, might be done. The treatment must be oriented by aetiology and directed towards the disease effects in patient comfort and quality of life. During treatment, the use of xerogenic drugs should be controlled, hydration should be promoted and other symptom control measures improved. The symptomatic treatment has three pathways: the increasing of saliva production by mechanical, gustatory or pharmacological stimulation; the using of saliva substitutes and the improving of active mouth care. Mechanical stimulation is obtained by chewing gum and gustatory stimulation may be reached by sucking Vitamin C tablets. Pilocarpine is the available drug to improve salivation. A soft diet must be advised, hard and dry food, tobacco and alcoholic beverages should be avoided. It's important that health workers teach patients with xerostomia the best way to get relief and the measures to prevent its complications that could, even more, compromise their quality of life.
Shawawra, Mousa; Khleif, Amal Dweib
Palliative care is a very new concept in Palestine. In fact, it is still not applicable or provided within the Palestinian health care system. However, Al-Sadeel Society had organized a one day workshop in Bethlehem on November 2008 for the health professionals from the governmental and non-governmental sectors to initiate and introduce the idea of palliative care for the first time in Palestine. The general population of Palestine is approximately 2.4 millions (2007), with a life expectancy of 74.3 years of age, the death rate is 3.7 per 1000 population, having 8,910 deaths a year. Deaths due to cancer were 2,305 in five years (1999-2003), where 5,542 new cases were newly diagnosed in the same period. Health services available for cancer patients are hospital units either in patient or day care units. According to the ministry of health (MOH) statistics there are 75 beds in oncology departments in MOH hospitals; represent 2.7% of the total number of beds available, and 60 beds in daily care departments with an occupancy rate at 231.8%. There is no hospice or bereavement follow up care available for patients or their families. Despite the fact that the Palestinian culture is one of the cultures that respect and care for the elderly, but at the end of life, when the load of symptoms is high, most of the patient are care for at hospitals, and usually dye there, because the families are not able to care for their patients, and as there is no system for home care available for the Palestinian patients, and if it is available it is available in limited places and on private bases that are expensive and not affordable to the majority of patients, gross domestic product (GPD) per capita= 1,100 as 2007 estimates). We conducted a needs assessment survey within the only four facilities that provide care for the oncology patients in the West Bank and were filled by the direct health care providers. The results were expressing the fact that there is no palliative care service
Lentz, Judy C
Walking the journey of serious illness is very difficult and stressful for patients and families. A universal principle of palliative care is caring for the patient/ family unit. This article introduces a model for the Palliative Care Doula for experienced and advanced practice palliative care nurses to support patients and families during the traumatic and vulnerable period of end-of-life care.
Chen, Emily K.; Riffin, Catherine; Prigerson, Holly; Reid, MC; Schultz, Leslie
We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practice-based research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue. PMID:26378859
Pillemer, Karl; Chen, Emily K; Riffin, Catherine; Prigerson, Holly; Reid, M C
We employed the research-to-practice consensus workshop (RTP; workshops held in New York City and Tompkins County, New York, in 2013) model to merge researcher and practitioner views of translational research priorities in palliative care. In the RTP approach, a diverse group of frontline providers generates a research agenda for palliative care in collaboration with researchers. We have presented the major workshop recommendations and contrasted the practice-based research priorities with those of previous consensus efforts. We uncovered notable differences and found that the RTP model can produce unique insights into research priorities. Integrating practitioner-identified needs into research priorities for palliative care can contribute to addressing palliative care more effectively as a public health issue.
Behmann, Mareike; Jünger, Saskia; Radbruch, Lukas; Schneider, Nils
In previous studies, key targets for public health initiatives to improve palliative care in Germany were defined. The aim of this study was the identification and prioritisation of actions to achieve these targets. A three-round Delphi study with 107 stakeholders acting on the meso and macrolevel of the healthcare system was undertaken. First round: proposing actions for each of the key targets; second round: assessment of the actions regarding their relevance; third round: ranking of the actions. 37 actions were generated (first round) of which 14 actions were rated as relevant (second round). In the third round, the action ranked highest was "close collaboration between specialist palliative care services, general practitioners and community nursing services", followed by "Implementing specialist palliative care in the community consequently" and "Strengthening generalist palliative care through training and education of general practitioners and nursing services". The range and the ranking of the actions provide an empirical basis to improve palliative care in Germany on different levels of policy, education and clinical practice. A focus should be on strengthening the collaboration between primary health care providers and specialist palliative care services. Copyright © 2012 Elsevier Ireland Ltd. All rights reserved.
Clark, Jennifer K; Fasciano, Karen
Young adulthood is a time of immense growth and possibilities. As a result, it is also a time when serious illness can have profound effects. This review examines the current data pertinent to young adult palliative care and discusses the challenges and opportunities where palliative medicine can enhance the care provided to this growing and vulnerable population. From the data, 2 primary themes emerged (1) ongoing young adult development not only generates unique biologic disease burdens and clinical treatment options but also requires frequent assessment and promotion and (2) binary health care systems often leave young adults without access to developmentally appropriate health care. Given its interdisciplinary approach, palliative care is uniquely poised to address the challenges known to caring for the seriously ill young adult.
Downing, Julia; Knapp, Caprice; Muckaden, Mary Ann; Fowler-Kerry, Susan; Marston, Joan
There is an urgent need to develop an evidence base for children's palliative care (CPC) globally, and in particular in resource-limited settings. Whilst the volume of CPC research has increased in the last decade, it has not been focused on countries where the burden of disease is highest. For example, a review of CPC literature in sub Saharan Africa (SSA) found only five peer-reviewed papers on CPC. This lack of evidence is not confined to SSA, but can be seen globally in specific areas, such as an insufficient research and evidence base on the treatment of pain and other symptoms in children. This need for an evidence base for CPC has been recognised for some time, however without understanding the priorities for research in CPC organisations, many struggle with how to allocate scarce resources to research. The International Children's Palliative Care Network (ICPCN) undertook a Delphi study between October 2012 and February 2013 in order to identify the global research priorities for CPC. Members of the ICPCN Scientific Committee formed a project working group and were asked to suggest areas of research that they considered to be important. The list of 70 areas for research was put through two rounds of the Delphi process via a web-based questionnaire. ICPCN members and affiliated stakeholders (n = 153 from round 1 and n = 95 from round 2) completed the survey. Participants from SSA were the second largest group of respondents (28.1 % round 1, 24.2 % round 2) followed by Europe. A list of 26 research areas reached consensus. The top five priorities were: Children's understanding of death and dying; Managing pain in children where there is no morphine; Funding; Training; and Assessment of the WHO two-step analgesic ladder for pain management in children. Information from this study is important for policy makers, educators, advocates, funding agencies, and governments. Priorities for research pertinent to CPC throughout the world have been identified. This
Luczak, J; Kluziak, M; Hunter, G Petrie
During the totalitarian era terminal care was excluded from the health care system, and oncology, including education in the field, was rather neglected. The political and economic reforms that started in the 1990s in the countries of eastern and central Europe enhanced the development of palliative care and improvements in cancer treatment standards. This survey was performed to assess the current status of education and training in supportive and palliative care. A questionnaire was prepared and distributed by the authors to national leaders in palliative/supportive care. Data obtained from 16 countries indicate progress in palliative care provision and education, though it is held up by economic difficulties and by the lack of regulations in countries engaged in reforms of their health care systems. Training in supportive care is deficient; the discipline is usually perceived as the management of side-effects of anticancer treatment, so that it is not separated from clinical oncology. Access to professional literature should be improved, and the creation of national literatures should be encouraged. The role of local leaders, NGOs and professional associations must be emphasized. The main goals are: improvement of education, and better quality and availability of palliative and supportive care, not only for patients with cancer but also in other progressive life-threatening diseases.
Centeno, Carlos; Clark, David; Lynch, Thomas; Racafort, Javier; Praill, David; De Lima, Liliana; Greenwood, Anthony; Flores, Luis Alberto; Brasch, Simon; Giordano, Amelia
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
Hermsen, M A; ten Have, H A
With the growth of palliative care services, interest in moral issues also seems to be growing. However, we need to know which moral issues are specific to palliative care. The first step in answering this is to consider the moral concerns raised and discussed by the palliative care community itself. This article presents a bibliographical analysis of moral problems, first by selecting the problems identified as moral problems in the leading palliative care journals, and then by classifying these into different types.
Saylor, Jennifer; Vernoony, Stephanie; Selekman, Janice; Cowperthwait, Amy
This quasi-experimental pretest-posttest study measured self-efficacy, attitudes toward physician-nurse collaboration, and interprofessional competencies as outcomes of a palliative care simulation. Based on experience level, teams of participants, 1 consisting of nursing/medical students and the other of nursing/medical health care professionals, completed a palliative care simulation as part of their education. Self-efficacy and attitudes toward physician-nurse collaboration were measured before and after simulation. Interprofessional competency was measured during the simulation. The results revealed a significant improvement in the previously mentioned measures, and interprofessional competency scores varied by profession and evaluator.
Koh, Kwee Choy; Gupta, Esha Das; Poovaneswaran, Sangeetha; Then, Siaw Ling; Teo, Michelle Jia Jui; Gan, Teik Yiap; Thing, Joanne Hwei Yean
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
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This article discusses fatigue in patients receiving palliative care. The article initially considers the prevalence of fatigue in different groups of palliative care patients, then addresses how it manifests before reviewing how it can be assessed and managed. The focus of the article is on palliative care but it draws on, and has relevance for, chronic disease more widely.
Poppel, David M; Cohen, Lewis M; Germain, Michael J
Despite ongoing technological advances, patients with end-stage renal disease (ESRD) have a mortality rate of approximately 23% per year, and comorbid cardiovascular, cerebrovascular, and peripheral vascular disorders often make life on dialysis an ordeal. This patient population needs an improved approach to symptom assessment and control, as well as advance care planning and high-quality palliative care. Families need support during the lifetime and after the death of their loved ones. To address these needs, the Renal Palliative Care Initiative (RPCI) was instituted at Baystate Medical Center, a large tertiary care hospital, and at eight dialysis clinics in the Connecticut River Valley. With the cooperation of a large nephrology practice, the Western New England Renal and Transplant Associates, a core group of physicians, nurses, and social workers were trained in palliative medicine, and charged with the goals of developing and implementing innovative interventions. The RPCI's programs include symptom management protocols, advance care planning, and bereavement services for families and staff. The Initiative is increasing completion of formal advance directives by the patient population, while staff and families are particularly pleased with annual renal memorial services. The RPCI experience has much to offer the practice of nephrology, and it is relevant to ongoing efforts to extend palliative medicine beyond the traditional focus on cancer and AIDS.
Selwyn, Peter A
As a physician working in palliative care, the author is often privileged to share special moments with patients and their families at the end of life. This haiku poem recalls one such moment in that precious space between life and death, as an elderly woman, surrounded by her adult daughters, takes her last breath. (PsycINFO Database Record
Jain, Nelia; Wallhagen, Margaret L.
Abstract Background: Age-related hearing loss is remarkably common, affecting more than 60% of adults over the age of 75. Moreover, hearing loss has detrimental effects on quality of life and communication, outcomes that are central to palliative care. Despite its high prevalence, there is remarkably little written on the impact of hearing loss in the palliative care literature. Objective: The objective was to emphasize its importance and the need for further study. We use a case as a springboard for discussing what is known and unknown about the epidemiology, presentation, screening methodologies, and treatment strategies for age-related hearing loss in palliative care. Discussion: The case describes a 65-year-old man with acute myelogenous leukemia (AML) that has progressed despite treatment. No concerns are raised about communication challenges during conversations between the palliative care team and the patient in his quiet room. However, in the midst of a family meeting, shortly after discussing prognosis, the patient reports that he cannot hear what anyone is saying. Conclusion: We describe simple methods of screening patients for hearing loss, and suggest that practical approaches should be used universally in patient encounters. These include facing the patient, pitching one's voice low, using a pocket talker, and creating a hearing-friendly environment when planning a family or group meeting. PMID:25867966
Aslakson, Rebecca A.; Curtis, J. Randall; Nelson, Judith E.
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
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Perrin, Kathleen Ouimet; Kazanowski, Mary
Palliative care consultations for patients with life-threatening illnesses provide benefits for the patients and their families as well as for the health care team. Patients have better quality of life and live longer but cost the health care system less. Still, many patients are not offered the opportunity to receive a palliative care consultation. Barriers to palliative care consultation for patients in critical care units include misunderstandings about palliative care and not having agreed upon criteria for referral. Critical care nurses can assist in overcoming these barriers.
As a result of limited access to antiretroviral treatment, many South Africans die yearly of AIDS. It is important that the end-of-life needs of these people be met. This article examines the major challenges involved in providing quality end-of-life care to people with AIDS in South Africa. Published reports are reviewed, as is the author's experience living and working in KwaZulu-Natal, South Africa. The issues discussed include the nature of the South African health care system, with emphasis on the scarcity of palliative care resources for AIDS patients, ineffective control of pain, models of care such as the integrated community-based home care model that relies heavily on community caregivers to meet the needs of people dying of AIDS, the living conditions of AIDS patients and their families, and AIDS-related stigma. Broad recommendations are presented for improving palliative care services for people with AIDS in the South African context.
Martins Pereira, Sandra; Hernández-Marrero, Pablo
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.
Yoshida, Saran; Miyashita, Mitsunori; Morita, Tatsuya; Akizuki, Nobuya; Akiyama, Miki; Shirahige, Yutaka; Ichikawa, Takayuki; Eguchi, Kenji
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.
Munro, S.; Mount, B.
Initial observations regarding the use of music therapy at one hospital in the palliative care of patients with advanced malignant disease are presented. In the hands of a trained music therapist, music has proven to be a potent tool for improving the quality of life. The diversity of its potential is particularly suited to the deversity of the challenges - physical, psychosocial and spiritual - that these patients present. Images FIG. 1 PMID:84704
Thai, Julie N.; Bakitas, Marie A.; Meier, Diane E.; Spragens, Lynn H.; Temel, Jennifer S.; Weissman, David E.; Rabow, Michael W.
Abstract Background Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Objective Our objective was to obtain in-depth information about palliative care clinics. Methods We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Results Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked “pain management” and “determining goals of care” as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Conclusions Once established, outpatient palliative care practices
Gulia, Ashish; Byregowda, Suman; Panda, Pankaj Kumar
Patients in advanced stages of illness trajectories with local and widespread musculoskeletal incurable malignancies, either treatment naive or having recurrence are referred to the palliative care clinic to relieve various disease-related symptoms and to improve the quality of life. Palliative care is a specialized medicine that offers treatment to the disease-specific symptoms, places emphasis on the psychosocial and spiritual aspects of life and help the patients and their family to cope with advance stage cancer in a stronger and reasonable way. The overall outcome of musculoskeletal malignancies has improved with the advent of multidisciplinary management. Even then these tumors do relapse and leads to organ failures and disease-specific deaths in children and young adults in productive age group thus requiring an integrated approach to improve the supportive/palliative care needs in end-stage disease. In this article, we would like to discuss the spectrum of presentation of advanced musculoskeletal malignancies, skeletal metastasis, and their management. PMID:27559251
Frković, Aleksandra; Bosković, Zvonimir
Palliative care is frequently discussed as an alternative or a counter-balance to euthanasia. In this paper, palliative care is considered as a response to dysthanasia or therapeutic persistence. First, the main features of dysthanasia are mentioned: the accent is put on different questions: until when to implement therapeutic persistence? When does the treatment become useless? What is a permanent vegetative condition? Then, palliative care, the scope of which is to achieve the best life quality for the patient and his family is discussed. The hospice and its care are emphasized, analyzing the international guidelines on the topics at the end of life. International palliative care recommendations are analyzed; special attention is paid on the codex of medical ethics and deontology and its regulations concerning palliative care. Conclusion summarizes some thoughts about dysthanasia and palliative care.
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
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
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.
Cartwright, Colleen Maria; White, Ben P; Willmott, Lindy; Williams, Gail; Parker, Malcolm Holbrook
To effectively care for people who are terminally ill, including those without decision-making capacity, palliative care physicians must know and understand the legal standing of Advance Care Planning in their jurisdiction of practice. This includes the use of advance directives/living wills and substitute decision-makers who can legally consent to or refuse treatment if there is no valid advance directive. This study aimed to investigate the knowledge, attitudes and practices of medical specialists most often involved in end-of-life care in relation to the law on withholding/withdrawing life-sustaining treatment from adults without decision-making capacity. A pre-piloted survey was posted to specialists in palliative, emergency, geriatric, renal and respiratory medicine; intensive care; and medical oncology in three Australian States. Surveys were analysed using SPSS 20 and SAS 9.3. The overall response rate was 32% (867/2702) - 52% from palliative care specialists. Palliative care specialists and geriatricians had significantly more positive attitudes towards the law (χ42(2) = 94.352; p < 0.001) and higher levels of knowledge about the withholding/withdrawing life-sustaining treatment law (χ7(2) = 30.033; p < 0.001) than did the other specialists, while still having critical gaps in their knowledge. A high level of knowledge of the law is essential to ensure that patients' wishes and decisions, expressed through Advance Care Planning, are respected to the maximum extent possible within the law, thereby according with the principles and philosophy of palliative care. It is also essential to protect health professionals from legal action resulting from unauthorised provision or cessation of treatment. © The Author(s) 2015.
To review important issues that address respect for patient autonomy, beneficnce, non-maleficence, and justice, which are included in communication surrounding the determination of decision-making capacity, informed consent, breaking bad news, and creating shared goals of care. Review articles, and government and organizational reports. Palliative care and its proximity to end-of-life care issues frequently raises ethical issues for patients, their families, and the clinicians caring for them. Supporting the identification and honoring the patient's preferences for treatment are central components of ethical behavior. Advance care planning provides an important opportunity for respecting patient autonomy and may be helpful when discussing care options surrounding resuscitation, withholding or withdrawal of treatment, or the determination of medical futility.
Kalanga, Noel; Keck, James W.; Wroe, Emily B.; Phiri, Atupere; Mayfield, Alishya; Chingoli, Felix; Beste, Jason A.; Tengatenga, Listern; Bazile, Junior
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
Knapp, Caprice A; Madden, Vanessa; Wang, Hua; Kassing, Kristin; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth A
Several studies have investigated nurses' attitudes toward hospice and palliative care for adults, yet little information exists about pediatrics. Assessing pediatric nurses' attitudes is especially important in Florida, where a publicly funded pediatric palliative care program operates in eight cities across the State. The aims of this study were 1) to assess the attitudes toward hospice and palliative care, and 2) to examine the associations between sociodemographic and nursing care factors and nurses' attitudes toward hospice and palliative care. A cross-sectional research design using online and mail-in survey data was used to address the study aims. Surveys were conducted with 279 pediatric nurses across Florida. Bivariate results showed there were significant differences between the attitudes of pediatric nurses employed in a city with a pediatric palliative care program versus those not employed in a program site (p = 0.05). Multivariate analyses also showed that being employed in a program site increased attitudinal scores toward hospice and pediatric palliative care by 0.6 points. Beyond being employed in an area city where a pediatric palliative care program operates, results also suggest that having prior training in palliative care could alter nurses' attitudes, which might subsequently lead to increased referrals and improved outcomes for children and families.
Huffman, Joan L
Palliative care in itself has many challenges; these challenges are compounded exponentially when placed in the setting of a mass casualty event, such as the 2010 Haiti earthquake. Haiti itself was an austere environment with very little infrastructure before the disaster. US surgeons, intensivists, and nurses worked hand in hand with other international providers and Haitian volunteers to provide the best care for the many. Improvisation and teamwork as well as respect for the Haitian caregivers were crucial to their successes. Sisyphean trials lie ahead. Haiti and its people must not be forgotten.
... Answers Palliative Care Questions and Answers Question Palliative Care Hospice Care Who can receive this care? Anyone with a ... a package deal? No, there is no ‘palliative care’ benefit package Yes, hospice is a comprehensive benefit covered by Medicare and ...
Ladwig, Susan; Robb, Jessica; Kelly, Adam; Nielsen, Eric; Quill, Timothy E.
Abstract Objective To determine the pattern and characteristics of palliative care (PC) consultations in patients with stroke and compare them with the characteristics of nonstroke consultations. Methods The palliative care program at Strong Memorial Hospital (SMH) was established in October 2001. SMH is a 765-bed academic medical center with approximately 38,000 discharges. For each consult from 2005 to 2007, we collected demographic, clinical, and service-related information. We explored similarities and differences in patients with different types of stroke, including patients with ischemic stroke, intracerebral hemorrhage, subarachnoid hemorrhage, and subdural hematoma. In addition, we compared these data to the nonstroke patients who had a palliative care consultation during the same time period. Results Over the 3-year period from 2005 to 2007, there were a total of 101 consultations in patients with stroke (6.3% of all PC consultations). Of the 101 consultations, 31 were in patients with ischemic stroke, 26 in patients with intracerebral hemorrhage, 30 in patients with subarachnoid hemorrhage, and 14 in patients with subdural hematoma. Patients with stroke who had a PC consult were more functionally impaired, less likely to have capacity, more likely to die in the hospital, and to have fewer traditional symptom burdens than other common diagnoses seen on the PC consultation service. The most common trajectory to death was withdrawal of mechanical ventilation, but varied by type of stroke. Common treatments negotiated in these consultations included mechanical ventilation, artificial nutrition, tracheostomy, and less likely antibiobics, intravenous fluids, and various neurosurgical procedures. Conclusions Patients with stroke are a common diagnosis seen on an inpatient palliative care consult service. Each stroke type represents patients with potentially distinct palliative care needs. PMID:20384501
Schuster, M; Ferner, M; Bodenstein, M; Laufenberg-Feldmann, R
Involvement of palliative care is so far not common practice for critically ill patients on surgical intensive care units (ICUs) in Germany. The objectives of palliative care concepts are improvement of patient quality of life by relief of disease-related symptoms using an interdisciplinary approach and support of patients and their relatives considering their current physical, psychological, social and spiritual needs. The need for palliative care can be identified via defined screening criteria. Integration of palliative care can either be realized using a consultative model which focusses on involvement of palliative care consultants or an integrative model which embeds palliative care principles into the routine daily practice by the ICU team. Early integration of palliative care in terms of advance care planning (ACP) can lead to an increase in goals of care discussions and quality of life as well as a decrease of mortality and length of stay on the ICU. Moreover, stress reactions of relatives and ICU staff can be reduced and higher satisfaction with therapy can be achieved. The core of goal of care discussions is professional and well-structured communication between patients, relatives and staff. Consideration of palliative care principles by model-based integration into ICU practice can improve complex intensive care courses of disease in a productive but dignified way without neglecting curative attempts.
Fenstad, Eric R.; Shanafelt, Tait D.; Sloan, Jeff A.; Novotny, Paul J.; Durst, Louise A.; Frantz, Robert P.; McGoon, Michael D.
Abstract Pulmonary arterial hypertension (PAH) is a chronic, symptomatic, life-threatening illness; however, it is complex, with variable expression regarding impact on quality of life (QOL). This study investigated attitudes and comfort of physicians regarding palliative care (PC) for patients with PAH and explored potential barriers to PC in PAH. An internet-based, mixed-methods survey was distributed to Pulmonary Hypertension Clinicians and Researchers, a professional organization within the Pulmonary Hypertension Association. Only responses from physicians involved in clinical care of patients with PAH were analyzed. Of 355 clinicians/researchers, 79 (22%) returned surveys, including 76 (21%) providers involved in clinical care. Responding physicians were mainly pulmonologists (67%), practiced in university/academic medical centers (89%), had been in practice a mean of 12 ± 7 years, cared for a median of 100 PAH patients per year, and reported a high level of confidence in managing PAH (87%), advanced PAH-specific pharmacologic interventions (95%), and end-of-life care (88%). Smaller proportions were comfortable managing pain (62%) and QOL issues (78%). Most physicians (91%) reported utilizing PC consultation at least once in the prior year, primarily in the setting of end-of-life/active dying (59%), hospice referral (46%), or symptomatic dyspnea/impaired QOL (40%). The most frequent reasons for not referring patients to PC included nonapproval by the patient/family (51%) and concern that PC is “giving up hope” (43%). PAH may result in symptoms that impair QOL despite optimal PAH therapy; however, PC awareness and utilization for PAH providers is low. Opportunities may exist to integrate PC into care for PAH patients. PMID:25621164
Harden, Karen; Price, Deborah; Duffy, Elizabeth; Galunas, Laura; Rodgers, Cheryl
Oncology nurses affect patient care at every point along the cancer journey. This creates the perfect opportunity to educate patients and caregivers about palliative care early and often throughout treatment. However, healthcare providers frequently do not have the knowledge and confidence to engage in meaningful conversations about palliative care. . The specific aims were to improve oncology nurses' palliative care knowledge, attitudes, and behaviors by providing a palliative care nursing education program. An additional aim was to increase the number of conversations with patients and families about palliative care. . This project had a pre-/post-test design to assess knowledge, attitudes, and behaviors at baseline and one month after implementation of an established education curriculum. The teaching strategy included one four-hour class for oncology RNs with topics about the definition of palliative care, pain and symptom management, and how to have palliative care conversations. . Results showed a statistically significant difference after the educational intervention for knowledge, attitudes, and behaviors. The number of conversations with patients and caregivers about palliative and end-of-life care increased significantly.
Jayard, S Stephen; Irudayadason, Nishant A; Davis, J Charles
Death is inevitable, but that does not mean it can be planned or imposed. It is an ethical imperative that we attend to the unbearable pain and suffering of patients with incurable and terminal illnesses. This is where palliative care plays a vital role. Palliative care has been growing faster in the world of medicine since its emergence as a specialty in the last decade. Palliative care helps to reduce physical pain while affirming the aspect of human suffering and dying as a normal process. The goal of palliative care is to improve the quality of life both of the patient and the family.
Wiebe, Lauren A; Von Roenn, Jamie H
The interdisciplinary team is fundamental to the successful delivery of quality palliative care. Ideally, the oncologist is an integral part of either the palliative care or hospice team and serves to maintain continuity of care through the end of life. In the United States, barriers can complicate the oncologist's easy integration into the hospice team as patients often remain at home. Also, there may be philosophical or clinical practice differences between oncology and palliative care at first glance. This article focuses on ways to overcome these potential obstacles and use differences in training to strengthen the team's impact. A significant part of oncology practice includes managing difficult symptoms, mitigating suffering, and discussing priorities of care--all elements of palliative medicine that oncologists perform daily. Participating on a palliative care team may be natural for oncologists, and some might elect to provide integrated palliative cancer care for patients throughout the course of their disease and at the end of life. Thus, there is a need to enrich the general oncologist's knowledge of specialized palliative medicine, as recommended by the major cancer organizations, including the American Society of Clinical Oncology and the European Society of Medical Oncology.It is important to know when to incorporate a palliative or hospice care team into the routine management of a cancer patient and what benefits these referrals can provide. Oncologists have an obligation to provide high-quality palliative care to all patients in an integrated fashion, including patients with advanced cancer enrolled in clinical trials for early therapeutics.
Minton, Mary E; Kerkvliet, Jennifer L; Mitchell, Amanda; Fahrenwald, Nancy L
Geographical disparities play a significant role in palliative and end-of-life care access. This study assessed availability of palliative and end of life (hospice) care in South Dakota. Grounded in a conceptual model of advance care planning, this assessment explored whether South Dakota health care facilities had contact persons for palliative care, hospice services, and advance directives; health care providers with specialized training in palliative and hospice care; and a process for advance directives and advance care planning. Trained research assistants conducted a brief telephone survey. Of 668 health care eligible facilities, 455 completed the survey for a response rate of 68 percent (455 out of 668). Over one-half of facilities had no specific contact person for palliative care, hospice services and advance directives. Nursing homes reported the highest percentage of contacts for palliative care, hospice services and advance directives. Despite a lack of a specific contact person, nearly 75 percent of facilities reported having a process in place for addressing advance directives with patients; slightly over one-half (53 percent) reported having a process in place for advance care planning. Of participating facilities, 80 percent had no staff members with palliative care training, and 73 percent identified lack of staff members with end-of-life care training. Palliative care training was most commonly reported among hospice/home health facilities (45 percent). The results of this study demonstrate a clear need for a health care and allied health care workforce with specialized training in palliative and end-of-life care.
Bétrémieux, P; Mannoni, C
The period of palliative care is a difficult time for parents and caregivers because they are all weakened by the proximity of death. First of all, because of religious and cultural differences, parents and families cannot easily express their beliefs or the rituals they are required to develop; second, this impossibility results in conflicts between the caregiver team and the family with consequences for both. Caregivers are concerned to allow the expression of religious beliefs and cultural demands because it is assumed that they may promote the work of mourning by relating the dead child to its family and roots. However, caregivers' fear not knowing the cultural context to which the family belongs and having inappropriate words or gestures, as sometimes families dare not, cannot, or do not wish to describe their cultural background. We attempt to differentiate what relates to culture and to religion and attempt to identify areas of potential disagreement between doctors, staff, and family. Everyone has to work with the parents to open a space of freedom that is not limited by cultural and religious assumptions. The appropriation of medical anthropology concepts allows caregivers to understand simply the obligations imposed on parents by their culture and/or their religion and open access to their wishes. Sometimes help from interpreters, mediators, ethnopsychologists, and religious representatives is needed to understand this reality. Copyright © 2013 Elsevier Masson SAS. All rights reserved.
Johannigman, Suzanne; Eschiti, Valerie
Marijuana has been documented to provide relief to patients in palliative care. However, healthcare providers should use caution when discussing medical marijuana use with patients. This article features a case study that reveals the complexity of medical marijuana use. For oncology nurses to offer high-quality care, examining the pros and cons of medical marijuana use in the palliative care setting is important.
Beccaro, M; Gollo, G; Ceccon, S; Giordano, M; Salvini, E; Vignali, S; Costantini, M; Di Leo, Silvia
This study was aimed at piloting a school-based intervention on severe illness, within a project focused on spreading knowledge of palliative care among high school students (phases 0-2 Medical Research Council Framework). The intervention entailed the screening of a topic-related movie, 2 classroom meetings, and the development of a class-based multimedia production. Five classes from 5 high schools participated in this study, and a before-after evaluation was used to assess intervention feasibility and impact. Valid questionnaires were filled in by 84% (before) and 79% (after) of the 89 students. Concerning students' knowledge on palliative care, the after evaluation showed a significantly higher paired proportions of students reporting on "improving patient quality of life" and "life-threatening illness." Intervention components were deemed helpful by students, and positive feedback on the experience was given.
Kumar, Senthil P
Context: Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. Aims: This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. Settings and Design: This was a systematic review of palliative care journals. Materials and Methods: Twelve palliative care journals were searched for articles with “paediatric” or “children” in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles’ category was further classified according to study designs. Statistical Analysis Used: Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. Results: The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). Conclusions: The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care. PMID:22347775
Warth, Marco; Keßler, Jens; Hillecke, Thomas K; Bardenheuer, Hubert J
Music therapy has been used successfully for over 30 years as part of palliative care programs for severely ill patients. There is nonetheless a lack of high-quality studies that would enable an evidence-based evaluation of its psychological and physiological effects. In a randomized controlled trial, 84 hospitalized patients in palliative care were assigned to one of two treatment arms--music therapy and control. The music therapy intervention consisted of two sessions of live music-based relaxation exercises; the patients in the control group listened to a verbal relaxation exercise. The primary endpoints were self-ratings of relaxation, well-being, and acute pain, assessed using visual analog scales. Heart rate variability and health-related quality of life were considered as secondary outcomes. The primary data analysis was performed according to the intention-to-treat principle. Analyses of covariance revealed that music therapy was more effective than the control treatment at promoting relaxation (F = 13.7; p <0.001) and well-being (F = 6.41; p = 0.01). This effect was supported by a significantly greater increase in high-frequency oscillations of the heart rate (F = 8.13; p = 0.01). Music therapy did not differ from control treatment with respect to pain reduction (F = 0.4; p = 0.53), but it led to a significantly greater reduction in the fatigue score on the quality-of-life scale (F = 4.74; p = 0.03). Music therapy is an effective treatment with a low dropout rate for the promotion of relaxation and well-being in terminally ill persons undergoing palliative care.
Baba, Mika; Maeda, Isseki; Morita, Tatsuya; Hisanaga, Takayuki; Ishihara, Tatsuhiko; Iwashita, Tomoyuki; Kaneishi, Keisuke; Kawagoe, Shohei; Kuriyama, Toshiyuki; Maeda, Takashi; Mori, Ichiro; Nakajima, Nobuhisa; Nishi, Tomohiro; Sakurai, Hiroki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Ozawa, Taketoshi; Yamamoto, Ryo; Tsuneto, Satoru
Accurate prognostic information in palliative care settings is needed for patients to make decisions and set goals and priorities. The Prognosis Palliative Care Study (PiPS) predictor models were presented in 2011, but have not yet been fully validated by other research teams. The primary aim of this study is to examine the accuracy and to validate the modified PiPS (using physician-proxy ratings of mental status instead of patient interviews) in three palliative care settings, namely palliative care units, hospital-based palliative care teams, and home-based palliative care services. This multicenter prospective cohort study was conducted in 58 palliative care services including 16 palliative care units, 19 hospital-based palliative care teams, and 23 home-based palliative care services in Japan from September 2012 through April 2014. A total of 2426 subjects were recruited. For reasons including lack of followup and missing variables (primarily blood examination data), we obtained analyzable data from 2212 and 1257 patients for the modified PiPS-A and PiPS-B, respectively. In all palliative care settings, both the modified PiPS-A and PiPS-B identified three risk groups with different survival rates (P<0.001). The absolute agreement ranged from 56% to 60% in the PiPS-A model and 60% to 62% in the PiPS-B model. The modified PiPS was successfully validated and can be useful in palliative care units, hospital-based palliative care teams, and home-based palliative care services. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Jankowski, Jane B
This article explores the hypothesis that when a child has a life-limiting illness, the interpersonal boundaries between the patient, the patient's parents, and the health care team members differ from traditional provider, patient, and parent boundaries because of the unique dynamics of palliative care in pediatrics. Providers from the Journey's Palliative Care Team at Albany Medical Center completed a brief survey about working in pediatric palliative care and what ethical challenges they have faced in trying to maintain professional boundaries as new palliative care providers. A retrospective review of survey responses and a review of relevant literature offer insight into the various concerns reported by the Journey's team. Conclusions about delivering comprehensive ethically sound palliative care services may serve as a pathway for future studies.
Toevs, Christine C
The purpose of palliative medicine is to prevent and relieve suffering and to help patients and their families set informed goals of care and treatment. Palliative medicine can be provided along with life-prolonging treatment or as the main focus of treatment. Increasingly, palliative medicine has a role in the surgical intensive care unit (SICU) and trauma. Data show involving palliative medicine in the SICU results in decreased length of stay, improved communication with families and patients, and earlier setting of goals of care, without increasing mortality. The use of triggers for palliative medicine consultation improves patient-centered care in the SICU. Copyright Â© 2012 Elsevier Inc. All rights reserved.
Griffith, Jane; Lyman, Jason A; Blackhall, Leslie J
Palliative care that provides specialized attention to pain and symptom management is important for patients with cancer. Palliative care aims to reduce pain and other symptoms through an interdisciplinary approach involving physicians, nurses, social workers, and other members of the healthcare team. Families are included in care planning. Patients and families benefit from the availability of palliative care services early in the disease process, particularly when symptoms impact quality of life. One way to implement early palliative interventions is the establishment of an ambulatory care clinic dedicated to palliative care. This article describes the experience of an outpatient palliative care clinic at a large teaching hospital by using case studies to highlight the benefits of ambulatory palliative care and concluding with recommendations for research.
Chintamaneni, Raja Lakshmi; Mpv, Prabhat; Gummadapu, Sarat; Salvadhi, Shyam Sundar
World Health Organization defines “palliative care” as the active total care of patients whose disease is not responding to curative treatment. Palliative care actually deals with patients at the terminal end stage of the disease. We always face a question why a dentist should be in a palliative team? What is the exact role of dentist? Dental treatment may not always be strenuous and curative, but also can focus on improving quality of life of the patient. Hence forth the present paper enlightens the importance of dentist role in palliative team. PMID:25121074
Murphy, Edel; Froggatt, Katherine; Connolly, Sheelah; O'Shea, Eamon; Sampson, Elizabeth L; Casey, Dympna; Devane, Declan
included studies. Two review authors independently assessed for inclusion all the potential studies we identified as a result of the search strategy. We resolved any disagreement through discussion or, when required, consulted with the rest of the review team. We independently extracted data and conducted assessment of methodological quality, using standard Cochrane methods. We identified two studies of palliative care interventions for people with advanced dementia. We did not pool data due to the heterogeneity between the two trials in terms of the interventions and the settings. The two studies measured 31 different outcomes, yet they did not measure the same outcome. There are six ongoing studies that we expect to include in future versions of this review.Both studies were at high risk of bias, in part because blinding was not possible. This and small sample sizes meant that the overall certainty of all the evidence was very low.One individually randomised RCT (99 participants) evaluated the effect of a palliative care team for people with advanced dementia hospitalised for an acute illness. While this trial reported that a palliative care plan was more likely to be developed for participants in the intervention group (risk ratio (RR) 5.84, 95% confidence interval (CI) 1.37 to 25.02), the plan was only adopted for two participants, both in the intervention group, while in hospital. The palliative care plan was more likely to be available on discharge in the intervention group (RR 4.50, 95% CI 1.03 to 19.75). We found no evidence that the intervention affected mortality in hospital (RR 1.06, 95% CI 0.53 to 2.13), decisions to forgo cardiopulmonary resuscitation in hospital or the clinical care provided during hospital admission, but for the latter, event rates were low and the results were associated with a lot of uncertainty.One cluster RCT (256 participants, each enrolled with a family carer) evaluated the effect of a decision aid on end-of-life feeding options on
Lilly, Evan J; Senderovich, Helen
Chronic obstructive pulmonary disease (COPD) is the only major worldwide cause of mortality that is currently increasing in prevalence. Furthermore, COPD is incurable, and the only therapy that has been shown to increase survival is oxygen therapy in selected patients. Compared to patients with cancer, patients with COPD experience similar levels of pain, breathlessness, fatigue, depression, and anxiety and have a worse quality of life but have comparatively little access to palliative care. When these patients do receive palliative care, they tend to be referred later than patients with cancer. Many disease, patient-, and provider-related factors contribute to this phenomenon, including COPD's unpredictable course, misperceptions of palliative care among patients and physicians, and lack of advance care planning discussions outside of crisis situations. A new paradigm for palliative care would introduce palliative treatments alongside, rather than at the exclusion of disease-modifying interventions. This integrated approach would circumvent the issue of difficult prognostication in COPD, as any patient would receive individualized palliative interventions from the time of diagnosis. These points will be covered in this review, which discusses the challenges in providing palliative care to COPD patients, the strategies to mitigate the challenges, management of common symptoms, and the evidence for integrated palliative care models as well as some suggestions for future development.
Feudtner, Chris; Blinman, Thane A
Palliative care is now a core component of pediatric care for children and families who are confronting serious illness with a low likelihood of survival. Pediatric surgeons, in partnership with pediatric palliative care teams, can play a pivotal role in assuring that these patients receive the highest possible quality of care. This article outlines a variety of definitions and conceptual frameworks, describes decision-making strategies and communication techniques, addresses issues of interdisciplinary collaboration and personal self-awareness, and illustrates these points through a series of case vignettes, all of which can help the pediatric surgeon perform the core tasks of pediatric palliative care. Copyright © 2013 Elsevier Inc. All rights reserved.
Waldman, Elisha; Wolfe, Joanne
Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome.
An article about the growth of palliative care, a medical subspecialty that has been shown to improve patient outcomes such as symptom management, quality of life, and patient and family satisfaction with care.
Sherman, Deborah Witt
Describes the role and responsibilities of advanced-practice nurses in palliative care and nursing's initiative in promoting high-quality care through the educational preparation of these nurses. (JOW)
Patel, Preena; Koh, Michelle; Carr, Lucinda; McHugh, Kieran
Palliative care is an expanding specialty within paediatrics, which has attracted little attention in the paediatric radiological literature. Paediatric patients under a palliative care team will have numerous radiological tests which we traditionally categorise under organ systems rather than under the umbrella of palliative medicine. The prevalence of children with life-limiting illness is significant. It has been estimated to be one per thousand, and this may be an underestimate. In this review, we will focus on our experience at one institution, where radiology has proven to be an invaluable partner to palliative care. We will discuss examples of conditions commonly referred to our palliative care team and delineate the crucial role of diagnostic radiology in determining treatment options.
Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith
There is a known shortage of trained palliative care professionals, and an even greater shortage of professionals who have been trained through interprofessional curricula. As part of an institutional Palliative Care Training Center grant, a core team of interprofessional palliative care academic faculty and staff completed a state-wide palliative care educational assessment to determine the needs for an interprofessional palliative care training program. The purpose of this article is to describe the process and results of our community needs assessment of interprofessional palliative care educational needs in Washington state. We approached the needs assessment through a cross-sectional descriptive design by using mixed-method inquiry. Each phase incorporated a variety of settings and subjects. The assessment incorporated multiple phases with diverse methodological approaches: a preparatory phase-identifying key informants; Phase I-key informant interviews; Phase II-survey; and Phase III-steering committee endorsement. The multiple phases of the needs assessment helped create a conceptual framework for the Palliative Care Training Center and developed an interprofessional palliative care curriculum. The input from key informants at multiple phases also allowed us to define priority needs and to refine an interprofessional palliative care curriculum. This curriculum will provide an interprofessional palliative care educational program that crosses disciplinary boundaries to integrate knowledge that is beneficial for all palliative care clinicians. The input from a range of palliative care clinicians and professionals at every phase of the needs assessment was critical for creating an interprofessional palliative care curriculum.
Billings, J Andrew; Dahlin, Constance; Dungan, Sheryn; Greenberg, Donna; Krakauer, Eric L; Lawless, Nan; Montgomery, Paul; Reid, Coleen
We present a description of a one-year palliative care fellowship training program for physicians at the Massachusetts General Hospital. We provide background information on the Palliative Care Service, and offer an overview of the educational content and methods for fellowship training, focusing especially on psychosocial aspects of care. The medical background and post-training positions of fellows are described. This document is meant to assist other palliative care fellowship programs in developing their curricula and possibly to serve as an initial template for creating educational standards and for identifying outcome measures for educational evaluation of such programs.
Inserra, Alessandro; Narciso, Alessandra; Paolantonio, Guglielmo; Messina, Raffaella; Crocoli, Alessandro
Survival rate for childhood cancer has increased in recent years, reaching as high as 70% in developed countries compared with 54% for all cancers diagnosed in the 1980s. In the remaining 30%, progression or metastatic disease leads to death and in this framework palliative care has an outstanding role though not well settled in all its facets. In this landscape, surgery has a supportive actor role integrated with other welfare aspects from which are not severable. The definition of surgical palliation has moved from the ancient definition of noncurative surgery to a group of practices performed not to cure but to alleviate an organ dysfunction offering the best quality of life possible in all the aspects of life (pain, dysfunctions, caregivers, psychosocial, etc.). To emphasize this aspect a more modern definition has been introduced: palliative therapy in whose context is comprised not only the care assistance but also the plans of care since the onset of illness, teaching the matter to surgeons in training and share paths. Literature is very poor regarding surgical aspects specifically dedicated and all researches (PubMed, Google Scholar, and Cochrane) with various meshing terms result in a more oncologic and psychosocial effort.
Pressure sore prevention in palliative care is recognized as being an essential element of holistic care, with the primary goal of promoting quality of life for patient and family. Little is known about the incidence of pressure sore development and the use of pressure sore risk assessment tools in palliative care settings. The development of a risk assessment tool specifically for palliative care patients in a 41-bedded specialist palliative care unit is described. The risk assessment tool was developed as part of a tissue viability practice development initiative. The approach adopted in the validation of the Hunters Hill Marie Curie Centre pressure sore risk assessment tool was the comparative analysis of professional judgment of experienced palliative care nurses with the numerical scores achieved during the assessment of risk on 291 patients (529 risk assessment events). This comparative analysis identified the threshold for different degrees of risk for the patient group involved: low risk, medium risk, high risk and very high risk. Further work is being undertaken to evaluate the inter-rater reliability of the new tool. A number of issues are explored in this paper in relation to pressure sore prevention in palliative care: the role of risk assessment tools, the sometimes conflicting aims of trying to ensure comfort and prevent pressure sore damage, and the uncertainties faced by palliative care nurses when they are trying to maintain quality of life for the dying.
Skrbina, Dijana; Simunović, Dubravka; Santek, Vjerocka; Njegovan-Zvonarević, Tatjana
Man is mortal, which means that as the earthly body perishes being, final. Disease and death will always be an inevitable and integral part of human experience. The way in which we try to identify and respond to the unique and individual needs of the dying is an indication of our maturity as a society. The number of people requiring palliative care is growing. Palliative care does not intend to either accelerate or postpone death she emphasizes the life and looks at dying as a normal process. It is an active form of care for patients with advanced, progressive illness, with the aim of suppressing pain and other symptoms in addition to providing psychological, social and spiritual support which ensures the best possible quality of life for patients and their families. Therefore requires a coordinated and interdisciplinary contribution team. The variety of professions in a team, and determine the needs of patients should be ready to provide physical, psychological, social and spiritual support using methods that result from an interdisciplinary, collaborative team approach. Development of a holistic approach and awareness in the medical and allied professions has led to a renewal of interest in the inclusion of music and other expressive media in contemporary concepts of palliative care, which are consistent with problem areas, clinical manifestations and the needs of patients. Music offers a direct and uncomplicated medium of intimacy, living in a man who listens to her, has a place where words lose their power. Music is like our existence, constantly polarizing and emotionally stimulating, as it touches the medium of the earliest layers of our becoming. The use of music in palliative care has proved very effective for a variety of effects that music creates in patients. These effects are achieved through the use of various musical techniques, such as musical improvisation, songwriting, receiving creative techniques, guided by imagination and music. These techniques
Woo, Kevin Y; Krasner, Diane L; Kennedy, Bruce; Wardle, David; Moir, Olivia
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.
Owens, Darrell; Flom, Jan
The goal of palliative care is to provide the alleviation or reduction of suffering and the support for the best possible quality of life for patients regardless of the stage of the disease. Palliative care can be provided in any patient care setting, including intensive care units. Death in intensive care units is a common occurrence, with literature suggesting that approximately 20% of deaths in the United States occur after a stay in the intensive care unit. Other studies suggest that approximately half of all chronically ill patients who die in a hospital receive care in the intensive care unit within 3 days of their deaths. Critical care nurses who work in neurological intensive care units are at the forefront of integrating palliative and critical care.
Bergenholtz, Heidi; Hølge-Hazelton, Bibi; Jarlbaek, Lene
Hospitals have a responsibility to ensure that palliative care is provided to all patients with life-threatening illnesses. Generalist palliative care should therefore be acknowledged and organized as a part of the clinical tasks. However, little is known about the organization and evaluation of generalist palliative care in hospitals. Therefore the aim of the study was to investigate the organization and evaluation of generalist palliative care in a large regional hospital by comparing results from existing evaluations. Results from three different data sets, all aiming to evaluate generalist palliative care, were compared retrospectively. The data-sets derived from; 1. a national accreditation of the hospital, 2. a national survey and 3. an internal self-evaluation performed in the hospital. The data were triangulated to investigate the organization and evaluation of palliative care in order to identify concordances and/or discrepancies. The triangulation indicated poor validity of the results from existing methods used to evaluate palliative care in hospitals. When the datasets were compared, several discrepancies occurred with regard to the organization and the performance of generalist palliative care. Five types of discrepancies were found in 35 out of 56 sections in the fulfilment of the national accreditation standard for palliative care. Responses from the hospital management and the department managements indicated that generalist palliative care was organized locally--if at all--within the various departments and with no overall structure or policy. This study demonstrates weaknesses in the existing evaluation methods for generalist palliative care and highlights the lack of an overall policy, organization and goals for the provision of palliative care in the hospital. More research is needed to focus on the organization of palliative care and to establish indicators for high quality palliative care provided by the hospital. The lack of valid indicators
Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael
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.
This article applies the anthropological concept of liminality to reconceptualize palliative care ethics. Liminality possesses both spatial and temporal dimensions. Both these aspects are analyzed to provide insight into the intersubjective relationship between patient and caregiver in the context of palliative care. Aristotelian practical wisdom, or phronesis, is considered to be the appropriate model for palliative care ethics, provided it is able to account for liminality. Moreover, this article argues for the importance of liminality for providing an ethical structure that grounds the doctrine of double effect and overcomes the impasse of phronesis in the treatment of the terminally ill.
Rocker, Graeme M; Simpson, A Catherine; Horton, Robert
The tendency toward "either/or" thinking (either cure or comfort) in traditional biomedical care paradigms does little to optimize care in advancing chronic illness. Calls for improved palliation in chronic lung disease mandate a review of related care gaps and current clinical practices. Although specialist palliative services have their advocates, adding yet another element to an already fragmented, often complex, care paradigm can be a challenge. Instead, we propose a more holistic, patient-centered approach based on elements fundamental to palliative and best care practices generally and integrated as needed across the entire illness trajectory. To support this approach, we review the concept of primary palliative care competencies, identify vulnerability specific to those living with advanced COPD (an exemplar of chronic lung disease), and describe the need for care plans shaped by patient-centered communication, timely palliative responsiveness, and effective advance care planning. A costly systemic issue in the management of chronic lung disease is patients' increasing dependency on episodic ED care to deal with preventable episodic crises and refractory dyspnea. We address this issue as part of a proposed model of care that provides proactive, collaborative case management and the appropriate and carefully monitored use of opioids. We encourage and support a renewed primary care resolve to integrate palliative approaches to care in advanced lung disease that, in concert with judicious referral to appropriate specialist palliative care services, is fundamental to what should be a more sustainable systematic improvement in palliative care delivery.
McKinley, Deb; Shearer, Janelle; Weng, Karla
Palliative care, which involves managing symptoms, controlling pain and addressing stress caused by a chronic or terminal illness, has been shown to keep patients out of the hospital and allow them to stay home and live more comfortably with their illness. Typically, it is provided by an interdisciplinary team led by a physician trained in palliative medicine. Rural areas have not always had access to such specialists. Yet, today, rural health care organizations are finding ways to create palliative care programs that meet the needs of their chronically ill and aging populations. This article describes a six-year initiative led by Stratis Health to advance palliative care in rural Minnesota. It highlights the work of FirstLight Health System in Mora and describes Stratis Health's Rural Palliative Care Measurement Pilot Project, an effort to develop and test measures for evaluating rural palliative care programs.
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
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
Gwyther, Liz; Brennan, Frank; Harding, Richard
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
Ward-Smith, Peggy; Linn, Jill Burris; Korphage, Rebecca M; Christenson, Kathy; Hutto, C J; Hubble, Christopher L
The American Academy of Pediatrics has provided clinical recommendations for palliative care needs of children. This article outlines the steps involved in implementing a pediatric palliative care program in a Midwest pediatric magnet health care facility. The development of a Pediatric Advanced Comfort Care Team was supported by hospital administration and funded through grants. Challenges included the development of collaborative relationships with health care professionals from specialty areas. Pediatric Advanced Comfort Care Team services, available from the time of diagnosis, are provided by a multidisciplinary team of health care professionals and individualized on the basis of needs expressed by each child and his or her family.
Hermsen, Maaike A; ten Have, Henk A M J
With the growth and development of palliative care, interest in pastoral care, spirituality, and religion also seems to be growing. The aim of this article is to review the topic of pastoral care, spirituality, and religion appearing in the journals of palliative care, between January 1984 and January 2002.
The basic principle of palliative care has evolved over time and is the historical origin of the modern hospice. WHO proposed the first definition of palliative care in 1989, and the definition was revised in 2002. These definitions have something in common. Both relieve the pain and suffering to improve QOL. Palliative care is also good for any kind of life-threatening disease, regardless of whether it requires short or long term recuperation. That also need to be able to accept equally all the people of the community. The provision of general palliative care is the responsibility of all medical, nursing, and health professionals for the welfare of all patients with life-threatening disease. Specialist palliative care is based on the basic principles of palliative care, intensive clinical training, and systematic acquisition of knowledge and skills training to support palliative care education, clinical research and training provided by the profession. It has been established by nursing and medical experts in palliative care that palliative care can provide expertise in interdisciplinary teams in different settings. It is necessary that the medical system.
Phillips, Jane L; Heneka, Nicole; Hickman, Louise; Lam, Lawrence; Shaw, Tim
Pain is a complex multidimensional phenomenon moderated by consumer, provider and health system factors. Effective pain management cuts across professional boundaries, with failure to screen and assess contributing to the burden of unrelieved pain. To test the impact of an online pain assessment learning module on specialist palliative care nurses' pain assessment competencies, and to determine whether this education impacted positively on palliative care patients' reported pain ratings. A quasi-experimental pain assessment education pilot study utilising 'Qstream(©)', an online methodology to deliver 11 case-based pain assessment learning scenarios, developed by an interdisciplinary expert panel and delivered to participants' work emails over a 28-day period in mid-2012. The 'Self-Perceived Pain Assessment Competencies' survey and chart audit data, including patient-reported pain intensity ratings, were collected pre-intervention (T1) and post-intervention (T2) and analysed using inferential statistics to determine key outcomes. Nurses working at two Australian inpatient specialist palliative care services in 2012. The results reported conform to the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines. Participants who completed the education intervention ( n = 34) increased their pain assessment knowledge, assessment tool knowledge and confidence to undertake a pain assessment ( p < 0.001). Participants were more likely to document pain intensity scores in patients' medical records than non-participants (95% confidence interval = 7.3%-22.7%, p = 0.021). There was also a significant reduction in the mean patient-reported pain ratings between the admission and audit date at post-test of 1.5 (95% confidence interval = 0.7-2.3) units in pain score. This pilot confers confidence of the education interventions capacity to improve specialist palliative care nurses' pain assessment practices and to reduce patient-rated pain intensity
... cardiac disease, respiratory disease, kidney failure, Alzheimer’s, HIV/AIDS, amyotrophic lateral sclerosis (ALS), multiple sclerosis and more. Palliative care can be provided at any stage of ...
Palliative care and geriatrics share many ideas and concepts: both intend to imporve quality of life, both focus on more than the physical domain, and both work in a multiprofessional team. More and more the elderly person attracts notice by palliative care. In multimorbid geriatric patients intentions to cure and to care go alongside sometimes over years in a fragile equilibrium and with uncertain prognosis. Therefore principals of palliative care and geriatrics meet at its best in these patients: improving function plays a major role in any symptom management; how to deal with cognitively impaired patients can be learned from geriatrics; various approaches from curative, palliative and rehabilitative often go hand in hand; decision making is a permanent and sophisticated task in all patients due to prognosis and multimorbidity.
... gov/ency/patientinstructions/000531.htm Palliative care - fluid, food, and digestion To use the sharing features on ... When Your Body Has Problems Handling Fluids and Food It is normal for a person who has ...
Dai, Ying-Xiu; Chen, Tzeng-Ji; Lin, Ming-Hwai
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.
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Bélanger, Emmanuelle; Rodríguez, Charo; Groleau, Danielle; Légaré, France; MacDonald, Mary Ellen; Marchand, Robert
The participation of patients in making decisions about their care is especially important towards the end of life because palliative care decisions involve extensive uncertainty and are heavily influenced by personal values. Yet, there is a scarcity of studies directly observing clinical interactions between palliative patients and their health care providers. In this study, we aimed to understand how patient participation in palliative care decisions is constructed through discourse in a community hospital-based palliative care team. This qualitative study combined ethnographic observations of a palliative care team with discourse analysis. Eighteen palliative care patients with cancer diagnoses, six family physicians, and two nurses were involved in the study. Multiple interactions were observed between each patient and health care providers over the course of 1 year, for a total of 101 consultations, 24 of which were audio-recorded. The analysis consisted in looking for the interpretive repertoires (i.e., familiar lines of argument used to justify actions) that were used to justify patient participation in decision-making during clinical interactions, as well as exploring their implications for decision roles and end-of-life care. Patients and their health care providers seldom addressed their decision-making roles explicitly. Rather, they constructed patient participation in palliative care decisions in a covert manner. Four interpretive repertoires were used to justify patient participation: (1) exposing uncertainty, (2) co-constructing patient preferences, (3) affirming patient autonomy, and finally (4) upholding the authority of health care providers. The results demonstrate how patients and health care providers used these arguments to negotiate their respective roles in decision-making. In conclusion, patients and health care providers used a variety of interpretive repertoires to covertly negotiate their roles in decision-making, and to legitimize
Cojean, N; Strub, C; Kuhn, P; Calvel, L
The "patients' rights and end-of-life care" act, known as the Leonetti law, has allowed implementation of palliative care in neonatology as an alternative to unreasonable therapeutic interventions. A palliative care project can be offered to newborns suffering from intractable diseases. It must be focused on the newborn's quality of life and comfort and on family support. Palliative care for newborns can be provided in the delivery room, in the neonatal unit, and also at home. Going home is possible but requires medical support. Here we describe the potential benefits of the intervention of a regional team of pediatric palliative care for newborns, both in the hospital and at home. Two clinical situations of palliative care at home started in the neonatal period and the neonatal unit are presented. They are completed by a retrospective national survey focusing on the type of support to newborns in palliative care in 2014, which was conducted in 22 French regional pediatric palliative care teams. It shows that 26 newborns benefited from this support at home in 2014. Sixteen infants were born after a pregnancy with a palliative care birth plan and ten entered palliative care after a decision to limit life-sustaining treatments. Twelve of them returned home before the 20th day of life. Sixteen infants died, six of them at home. The regional pediatric palliative care team first receives in-hospital interventions: providing support for ethical reflection in the development of the infant's life project, meeting with the child and its family, helping organize the care pathway to return home. When the child is at home, the regional pediatric palliative care team can support the caregiver involved, provide home visits to continue the clinical monitoring of the infant, and accompany the family. The follow-up of the bereavement and the analysis of the practices with caregivers are also part of its tasks.
Abudari, Gassan; Zahreddine, Hassan; Hazeim, Hassan; Assi, Mohammad Al; Emara, Sania
Background Palliative care is not yet integrated into the health-care system in Saudi Arabia. King Faisal Specialist Hospital and Research Centre-Riyadh (KFSH&RC-Riyadh) is a tertiary care facility and regional cancer centre in Saudia Arabia with a highly multinational nursing workforce. Little is known about these nurses' knowledge of and attitudes towards palliative care. Aim To determine the palliative care knowledge and attitudes of the nursing workforce of KFSH&RC-Riyadh and any influencing factors. Method A questionnaire including demographic data, the Palliative Care Quiz for Nurses (PCQN), and Frommelt Attitude Toward Care of the Dying scale (FATCOD) was completed by 395 staff nurses from 19 countries. Results The nurses scored a mean of 111.66 out of 150 on the FATCOD scale and of 9.06 out of 20 on the PCQN. These scores indicate moderate attitudes towards but a knowledge deficit regarding palliative care. The nurses' palliative care training and years of nursing experience significantly affected the scores. The level of palliative care integration in the nurses' home countries was the most significant factor in multiple regression tests. Conclusion Palliative care integration into the health-care system of the country in which nurses train significantly influences their knowledge of and attitudes towards palliative care. Incorporating palliative care into nursing education might promote positive attitudes towards palliative care in nurses while enhancing their knowledge and skills.
Steinberg, Steven M
For most clinicians and patients, the discussion of palliative care is a difficult topic. It is complicated by both the clinician's and patient's belief systems, which are frequently heavily influenced by cultural and religious upbringing. This article discusses the impact of some of those differences on attitudes toward end of life decisions. Several different religions and cultures have been evaluated for their impact on perceptions of palliative care and the authors will share some examples.
This study reports data gathered via extensive interviews with some of the leading authorities on the euthanasia policy that were conducted in the Netherlands. They were asked: It has been argued that the policy and practice of euthanasia in the Netherlands is the result of undeveloped palliative care. What do you think? I also mentioned the fact that there are only a few hospices in the Netherlands. The responses were different and contradictory. Many interviewees agreed with the statement. Almost all of those agreeing with it said that only during the late 1990s were people beginning to admit that there was a need to improve palliative care. Some interviewees insisted that doctors first need to explore other options for helping the patient prior to choosing the course of euthanasia. Other interviewees thought that palliative care is well developed in the Netherlands and that euthanasia has actually paved the way for calling more attention to palliative care.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
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
Trauma remains a leading cause of morbidity and mortality in the United States. Despite the aggressive and heroic nature of trauma care, including trauma surgery, 10% to 20% of patients admitted to trauma intensive care units die. As the population continues to age, it is predicted that by 2050, approximately 40% of those experiencing traumatic injury will be older than 65 years. For multiple reasons, people in this age group who experience trauma are at greater risk for death. Palliative care is the specialty of health care that provides care for patients with serious, life-threatening, or life-limiting illness or injury, regardless of the stage of disease or treatment. The goal of palliative care is to reduce or alleviate suffering through expert pain and symptom management, as well as assistance with decision making. The integration of palliative and trauma care can assist and support patients and families through stressful, often life-changing times, regardless of the final outcome.
Madden, Kevin; Wolfe, Joanne; Collura, Christopher
The chronicity of illness that afflicts children in Pediatric Palliative Care and the medical technology that has improved their lifespan and quality of life make prognostication extremely difficult. The uncertainty of prognostication and the available medical technologies make both the neonatal intensive care unit and the pediatric intensive care unit locations where many children will receive Pediatric Palliative Care. Health care providers in the neonatal intensive care unit and pediatric intensive care unit should integrate fundamental Pediatric Palliative Care principles into their everyday practice.
Robert, Rhonda; Zhukovsky, Donna S; Mauricio, Riza; Gilmore, Katherine; Morrison, Shirley; Palos, Guadalupe R
This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.
Kumar, Senthil P
Objective: A common disorder requiring symptom palliation in palliative and end-of-life care is cancer. Cancer pain is recognized as a global health burden. This paper sought to systematically examine the extent to which there is an adequate scientific research base on cancer pain and its reporting characteristics in the palliative care journal literature. Materials and Methods: Search conducted in MEDLINE and CINAHL sought to locate all studies published in 19 palliative/ hospice/ supportive/ end-of-life care journals from 2009 to 2010. The journals included were: American Journal of Hospice and Palliative Care, BMC Palliative Care, Current Opinion in Supportive and Palliative Care, End of Life Care Journal, European Journal of Palliative Care, Hospice Management Advisor, Indian Journal of Palliative Care, International Journal of Palliative Nursing, Internet Journal of Pain Symptom Control and Palliative Care, Journal of Pain and Palliative Care Pharmacotherapy, Journal of Palliative Care, Journal of Palliative Medicine, Journal of Social Work in End-of-life and Palliative Care, Journal of Supportive Oncology, Palliative Medicine, Palliative and Supportive Care, and Supportive Care in Cancer. Journal contents were searched to identify studies that included cancer pain in abstract. Results: During the years 2009 and 2010, of the selected 1,569 articles published in the journals reviewed, only 5.86% (92 articles) were on cancer pain. Conclusion: While researchers in the field of palliative care have studied cancer pain, the total percentage for studies is still a low 5.86%. To move the field of palliative care forward so that appropriate guidelines for cancer pain management can be developed, it is critical that more research be reported upon which to base cancer pain therapy in an evidence-based palliative care model. PMID:21633623
The purpose for this observational research was to understand how Can Support provides palliative care at home and analyze its strengths and weaknesses in various socioeconomic scenarios for future development. In the period of 2 weeks, patients and their caregivers were silently observed in their natural surroundings during home care visits in order to listen their problems, identify the pattern of questions for the home care team, their natural way of storytelling, organizational techniques for medicines and medical reports, care givers lives, patient journey, etc. Such observations have enabled the understanding of the phenomena of home palliative care and have led to the identification of certain influential variables of the practice.
Masel, Eva K; Kitta, Anna; Huber, Patrick; Rumpold, Tamara; Unseld, Matthias; Schur, Sophie; Porpaczy, Edit; Watzke, Herbert H
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
Sommerbakk, Ragni; Haugen, Dagny Faksvåg; Tjora, Aksel; Kaasa, Stein; Hjermstad, Marianne Jensen
Implementation of quality improvements in palliative care (PC) is challenging, and detailed knowledge about factors that may facilitate or hinder implementation is essential for success. One part of the EU-funded IMPACT project (IMplementation of quality indicators in PAlliative Care sTudy) aiming to increase the knowledge base, was to conduct national studies in PC services. This study aims to identify factors perceived as barriers or facilitators for improving PC in cancer and dementia settings in Norway. Individual, dual-participant and focus group interviews were conducted with 20 employees working in different health care services in Norway: two hospitals, one nursing home, and two local medical centers. Thematic analysis with a combined inductive and theoretical approach was applied. Barriers and facilitators were connected to (1) the innovation (e.g. credibility, advantage, accessibility, attractiveness); (2) the individual professional (e.g. motivation, PC expertise, confidence); (3) the patient (e.g. compliance); (4) the social context (e.g. leadership, culture of change, face-to-face contact); (5) the organizational context (e.g. resources, structures/facilities, expertise); (6) the political and economic context (e.g. policy, legislation, financial arrangements) and (7) the implementation strategy (e.g. educational, meetings, reminders). Four barriers that were particular to PC were identified: the poor general condition of patients in need of PC, symptom assessment tools that were not validated in all patient groups, lack of PC expertise and changes perceived to be at odds with staff's philosophy of care. When planning an improvement project in PC, services should pay particular attention to factors associated with their chosen implementation strategy. Leaders should also involve staff early in the improvement process, ensure that they have the necessary training in PC and that the change is consistent with the staff's philosophy of care. An important
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
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.
van Riet Paap, Jasper; Vernooij-Dassen, Myrra; Sommerbakk, Ragni; Moyle, Wendy; Hjermstad, Marianne J; Leppert, Wojciech; Vissers, Kris; Engels, Yvonne
The European population is ageing, and as a consequence, an increasing number of patients are in need of palliative care, including those with dementia. Although a growing number of new insights and best practices in palliative care have been published, they are often not implemented in daily practice. The aim of this integrative review is to provide an overview of implementation strategies that have been used to improve the organisation of palliative care. Using an integrative literature review, we evaluated publications with strategies to improve the organisation of palliative care. Qualitative analysis of the included studies involved categorisation of the implementation strategies into subgroups, according to the type of implementation strategy. From the 2379 publications identified, 68 studies with an experimental or quasi-experimental design were included. These studies described improvements using educational strategies (n = 14), process mapping (n = 1), feedback (n = 1), multidisciplinary meetings (n = 1) and multi-faceted implementation strategies (n = 51). Fifty-three studies reported positive outcomes, 11 studies reported mixed effects and four studies showed a limited effect (two educational and two multi-faceted strategies). This review is one of the first to provide an overview of the available literature in relation to strategies used to improve the organisation of palliative care. Since most studies reported positive results, further research is needed to identify and improve the effects of strategies aiming to improve the organisation of palliative care.
Nelson, Judith E.; Cortez, Therese B.; Curtis, J. Randall; Lustbader, Dana R.; Mosenthal, Anne C.; Mulkerin, Colleen; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret L.; Weissman, David E.; Puntillo, Kathleen A.
Palliative care is increasingly recognized as an integral component of comprehensive intensive care for all critically ill patients, regardless of prognosis, and for their families. Here we discuss the key role that nurses can and must continue to play in making this evidence-based paradigm a clinical reality across a broad range of ICUs. We review the contributions of nurses to implementation of ICU safety initiatives as a model that can be applied to ICU palliative care integration. We focus on the importance of nursing involvement in design and application of work processes that facilitate this integration in a systematic way, including processes that ensure the participation of nurses in discussions and decision making with families about care goals. We suggest ways that nurses can help to operationalize an integrated approach to palliative care in the ICU and to define their own essential role in a successful, sustainable ICU palliative care improvement effort. Finally, we identify resources including The IPAL-ICU Project™, a new initiative by the Center to Advance Palliative Care that can assist nurses and other healthcare professionals to move such efforts forward in diverse critical care settings. PMID:21874122
Weissman, David E; Morrison, R Sean; Meier, Diane E
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.
Mun, Eluned; Nakatsuka, Craig; Umbarger, Lillian; Ruta, Ruth; Mccarty, Tracy; Machado, Cynthia; Ceria-Ulep, Clementina
For improved utilization of the existing palliative care team in the intensive care unit (ICU), a process was needed to identify patients who might need a palliative care consultation in a timelier manner. A systematic method to create a new program that would be compatible with our specific ICU environment and patient population was developed. A literature review revealed a fairly extensive array of reports and numerous clinical practice guidelines, which were assessed for information and strategies that would be appropriate for our unit. The recommendations provided by the Center to Advance Palliative Care from its Improving Palliative Care in the ICU project were used to successfully implement a new palliative care initiative in our ICU. The guidelines provided by the Improving Palliative Care in the ICU project were an important tool to direct the development of a new palliative care ICU initiative.
van de Geer, Joep; Groot, Marieke; Andela, Richtsje; Leget, Carlo; Prins, Jelle; Vissers, Kris; Zock, Hetty
Spiritual care is reported to be important to palliative patients. There is an increasing need for education in spiritual care. To measure the effects of a specific spiritual care training on patients' reports of their perceived care and treatment. A pragmatic controlled trial conducted between February 2014 and March 2015. The intervention was a specific spiritual care training implemented by healthcare chaplains to eight multidisciplinary teams in six hospitals on regular wards in which patients resided in both curative and palliative trajectories. In total, 85 patients were included based on the Dutch translation of the Supportive and Palliative Care Indicators Tool. Data were collected in the intervention and control wards pre- and post-training using questionnaires on physical symptoms, spiritual distress, involvement and attitudes (Spiritual Attitude and Involvement List) and on the perceived focus of healthcare professionals on patients' spiritual needs. All 85 patients had high scores on spiritual themes and involvement. Patients reported that attention to their spiritual needs was very important. We found a significant ( p = 0.008) effect on healthcare professionals' attention to patients' spiritual and existential needs and a significant ( p = 0.020) effect in favour of patients' sleep. No effect on the spiritual distress of patients or their proxies was found. The effects of spiritual care training can be measured using patient-reported outcomes and seemed to indicate a positive effect on the quality of care. Future research should focus on optimizing the spiritual care training to identify the most effective elements and developing strategies to ensure long-term positive effects. This study was registered at the Dutch Trial Register: NTR4559.
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
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.
Governmental policies recommend the palliative care at home for cancer patients. However, there are some barriers to discharge cancer patients from the hospital who want to receive end-of-life care at their homes. Anesthesiologists whose main job is to perform general anesthesia in the operating theater usually have little contact with general practitioners giving community palliative care. So it is important to communicate each other to make opportunities to discuss an organized system and care plan for these patients, and to improve information transfer.
Ronaldson, Susan; Hayes, Lillian; Aggar, Christina; Green, Jennifer; Carey, Michele
To investigate spiritual caring by palliative care nurses and to describe their interventions. Spirituality and spiritual caring are recognised as integral components of holistic nursing. Qualitative data captured on a questionnaire were analysed thematically ( Braun and Clarke, 2006 ). The study involved forty-two palliative care registered nurses working across seven palliative care services in Sydney, Australia. The research question was: 'What spiritual caring interventions do palliative care nurses use in their practice?' Nurses completed an open-ended questionnaire to identify and interpret their spiritual caring. Three sub-theme categories and four major concepts of spiritual caring. Categories identified are: humanistic, pragmatic and religious interventions; while concepts of spiritual caring are: 'being with', 'listening to', 'facilitation of' and 'engaging in'. A conceptual understanding of spiritual caring was identified.
Rassouli, Maryam; Sajjadi, Moosa
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.
Gray, Alan; Ezzat, Adnan
The increasing life expectancy in Saudi Arabia will be accompanied by an alteration of the patterns of disease similar to that in Western countries. One of these will be cancer, the second leading cause of death in the west at present, where 1:3 people develop cancer during their lifetime and 1:4 die of it. Cancer deaths are rarely easy. The distress particularly the pain it can cause is legendary. Palliative care is the care and study of patients with active progressive far advanced disease, where cure is impossible, the prognosis predictably short, and the focus of care is the patient's quality of life. A Palliative Care Program has been developed at KFSH&RC, since 1991. This has broadened the spectrum of health services available to cancer patients. Palliative care needs to be more widely available in the kingdom to relieve an important cause of human suffering. PMID:23008572
Robinson, Maisha T.; Holloway, Robert G.
Abstract Purpose of review: To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. Recent findings: Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. Summary: We provide an overview of neuropalliative care as a fundamental skill set for all neurologists. PMID:26918202
May, Peter; Hynes, Geralyn; McCallion, Philip; Payne, Sheila; Larkin, Philip; McCarron, Mary
Palliative care for patients with advanced illness is a subject of growing importance in health services, policy and research. In 2001 Ireland became one of the first nations to publish a dedicated national palliative care policy. This paper uses the 'policy analysis triangle' as a framework to examine what the policy entailed, where the key ideas originated, why the policy process was activated, who were the key actors, and what were the main consequences. Although palliative care provision expanded following publication, priorities that were unaddressed or not fully embraced on the national policy agenda are identified. The factors underlying areas of non-fulfilment of policy are then discussed. In particular, the analysis highlights that policy initiatives in a relatively new field of healthcare face a trade-off between ambition and feasibility. Key policy goals could not be realised given the large resource commitments required; the competition for resources from other, better-established healthcare sectors; and challenges in expanding workforce and capacity. Additionally, the inherently cross-sectoral nature of palliative care complicated the co-ordination of support for the policy. Policy initiatives in emerging fields such as palliative care should address carefully feasibility and support in their conception and implementation. Copyright © 2013 Elsevier Ireland Ltd. All rights reserved.
Ezer, Tamar; Marston, Joan
A fundamental and neglected part of the global response to HIV and AIDS, palliative care is also a critical entry-point for legal services. As Tamar Ezer and Joan Marston write, providing legal services to patients in palliative care can both protect human rights and improve health outcomes.
Phillips, Jane; Andrews, Lisa; Hickman, Louise
To determine whether burnout, role ambiguity, or conflict affects Australian hospice volunteers. Hospice volunteers (n = 120) were invited to participate in this pilot survey. Quantitative data were analyzed using descriptive statistics, while the free-text responses were analyzed using thematic content analysis. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) Guidelines have been used to report this data. A total of 97 participants completed the survey. The majority were middle-aged women who had been palliative care volunteers for more than 7 years and volunteered 14 hours/week (median). Participants reported low levels of role ambiguity (x = 8.4, standard deviation [SD] ±3.0) and conflict (x = 9.8, SD ±3.4) and described enjoying their volunteering and having no symptoms of burnout (76%). Active hospice volunteers report low levels of role ambiguity, conflict, and burnout. Adopting a range of self-care strategies and working within a structured volunteer program appear to be important protective factors. © The Author(s) 2013.
Georges, Jean-Jacques; Onwuteaka-Philipsen, Bregje D; van der Heide, Agnes; van der Wal, Gerrit; van der Maas, Paul J
In recent decades significant developments in end-of-life care have taken place in The Netherlands. There has been more attention for palliative care and alongside the practice of euthanasia has been regulated. The aim of this paper is to describe the opinions of physicians with regard to the relationship between palliative care and euthanasia, and determinants of these opinions. Cross-sectional. Representative samples of physicians (n = 410), relatives of patients who died after euthanasia and physician-assisted suicide (EAS; n = 87), and members of the Euthanasia Review Committees (ERCs; n = 35). Structured interviews with physicians and relatives of patients, and a written questionnaire for the members of the ERCs. Approximately half of the physicians disagreed and one third agreed with statements describing the quality of palliative care in The Netherlands as suboptimal and describing the expertise of physicians with regard to palliative care as insufficient. Almost two thirds of the physicians disagreed with the suggestion that adequate treatment of pain and terminal care make euthanasia redundant. Having a religious belief, being a nursing home physician or a clinical specialist, never having performed euthanasia, and not wanting to perform euthanasia were related to the belief that adequate treatment of pain and terminal care could make euthanasia redundant. The study results indicate that most physicians in The Netherlands are not convinced that palliative care can always alleviate all suffering at the end of life and believe that euthanasia could be appropriate in some cases.
Victoria, Kitty; Patel, Sarita
Background: Studies have shown that over 50% of end-of-life discussions take place for the first time in the hospital and that terminally ill patients often have unrealistic views regarding the possible scope of treatment. The Palliative Care information Act (PCIA) was passed in an attempt to address the lack of access for terminally ill patients to palliative care services. A multi-database systematic review was performed on published studies from 2010 to present, and there were none found measuring the effectiveness of the PCIA. Objectives: We aimed to study the effect of the PCIA on access to palliative care services. Methods: We conducted a retrospective chart review of all terminally ill patients who died at Kingsbrook Jewish Medical Center from January 2010 to August 2013 in relation to passing of the PCIA. Results: Prelaw (prior to the law passing), 12.3% of the terminal patients received palliative care consults, 25% during the transition period (time between passing of law and when it came into effect) and 37.7% postlaw (after coming into effect) (P < 0.001). Conclusions: Legislation can have a significant effect on terminally ill patient's access to palliative care services and can change the culture of a hospital to be more pro-palliative for the appropriate populations. PMID:27803564
Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith
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.
Chong, L A; Khalid, F; Khoo, T B; Teh, S H; Kuan, G L; Aina Mariana, A M; Alias, E; Chieng, C H; Razali, H; Ong, G B; Zainah, S H; Shukor, I N C; Wong, J J
Awareness for paediatric palliative care has resulted in the impetus for paediatrician-led palliative care services across Malaysia. However, there is paucity of local data on patients receiving hospital-based paediatric palliative care. We aim to review the clinical spectrum of patients referred to these services. An observational study of children aged between 0-18 years receiving palliative care at 13 hospitals between 1st January and 31st December 2014 was carried out. There were 315 patients analysed, 90 (28.6%) and 46 (14.6%) were neonates and adolescents respectively. The main ICD-10 diagnostic categories for all patients were identified to be 'Congenital malformations, deformations and chromosomal abnormalities' 117 (37.1%), 'Diseases of nervous system' 76 (24.1%) and 'Neoplasms' 60 (19.0%). At referral 156 (50%) patients had holistic needs assessments. Patients with 'Diseases of nervous system' were assessed to have significantly more physical needs than the other two diagnostic categories. Majority of patients who knew of their diagnosis and prognosis were those with malignancy. Over a fifth of referrals were at their terminal admission. Of 144 who died, 111 (77.1%) had advanced care plans. There was bereavement follow-up in 98 (68.1%) patients. Patients referred for palliative care have varied diagnoses and needs. To ensure all paediatricians are competent to deliver quality care to all children, further education and training initiatives is imperative.
Strauss, Gerald; Nelson, Barbara J.
Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)
Bégnon, Julie; Vigneron, Sylvie
A team has studied the impact of laughter in palliative care. For the majority of caregivers, laughter is perceived as a complementary tool for supporting patients, but many are reluctant to use it. Patients, for their part, are receptive to it. Used in the correct doses, laughter can enrich care.
Strauss, Gerald; Nelson, Barbara J.
Interviews with 6 of 10 Veterans' Affairs programs offering postdoctoral fellowships in geropsychology indicated that only 30% included palliative care or hospice training, despite the fact that the veteran population is likely to have an increasing need for terminal illness care. (SK)
The implementation of paediatric palliative care aims to fulfil objectives regarding the support provided for the child and his/her family in all aspects of care. It is guided by regulations and recommendations relating to pain relief, quality of life and support for families.
Masucci, Lisa; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C
Health system restructuring coupled with the preference of patients to be cared for at home has altered the setting for the provision of palliative care. Accordingly, there has been emphasis on the provision of home-based palliative care by multidisciplinary teams of health care providers. Evidence suggests that these teams are better able to identify and deal with the needs of patients and their family members. Currently there is a lack of literature examining the predictors of palliative care service use for various professional service categories. The purpose of this study was to examine the predictors of the propensity and intensity of five main health service categories in the last three months of life for home-based palliative care patients. This was a prospective cohort study. The predictors of service use were assessed using a two-part model, which treats the decision to use a service (propensity) and the amount of service use (intensity) as two distinct processes. Propensity was modeled using a logistic regression and intensity was modeled using ordinary least squares regression. The results indicate that each service category emerged with a different set of predictor variables. Common predictors of health service use across service categories were patient age and functional status. The results suggest that a consistent set of predictors across service categories does not exist, and thus the determinants of access to each service category are unique. These findings will help case managers, health administrators, and policy decision makers better allocate human resources to palliative patients.
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L; Scott, Rosalind; Bravery, Ruth; Candy, Bridget
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
Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C
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.
Worster, Brooke; Swartz, Kristine
With the emergence of telemedicine as a routine form of care in various venues, the opportunities to use technology to care for the most vulnerable, most ill cancer patients are extremely appealing. Increasingly, evidence supports early integration of palliative care with standard oncologic care, supported by recent NCCN guidelines to increase and improve access to palliative care. This review looks at the use of telemedicine to expand access to palliative care as well as provide better care for patients and families where travel is difficult, if not impossible. When telemedicine has been used, often in Europe, for palliative care, the results show improvements in symptom management, comfort with care as well as patient and family satisfaction. One barrier to use of telemedicine is the concerns with technology and technology-related complications in population that is often elderly, frail and not always comfortable with non-face-to-face physician care. There remain significant opportunities to explore this intersection of supportive care and telemedicine.
Weaver, Meaghann S; Heinze, Katherine E; Kelly, Katherine P; Wiener, Lori; Casey, Robert L; Bell, Cynthia J; Wolfe, Joanne; Garee, Amy M; Watson, Anne; Hinds, Pamela S
The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members.
Weaver, Meaghann S.; Heinze, Katherine E.; Kelly, Katherine P.; Wiener, Lori; Casey, Robert L.; Bell, Cynthia J.; Wolfe, Joanne; Garee, Amy M.; Watson, Anne; Hinds, Pamela S.
The study team conducted a systematic review of pediatric and adolescent palliative cancer care literature from 1995 to 2015 using four databases to inform development of a palliative care psychosocial standard. A total of 209 papers were reviewed with inclusion of 73 papers for final synthesis. Revealed topics of urgent consideration include the following: symptom assessment and intervention, direct patient report, effective communication, and shared decision-making. Standardization of palliative care assessments and interventions in pediatric oncology has the potential to foster improved quality of care across the cancer trajectory for children and adolescents with cancer and their family members. PMID:26700928
Gaskins, Jessica L
Palliative care is not a term solely used for humans when discussing health care; the term is also used when discussing veterinary patients. Pets are considered part of the family by pet owners, and they have a special relationship that only another pet owner can fully understand. This article discusses some of the healthcare problems that affect pets (and their owners), statistics on the most commonly used medications for veterinary patients, quality of life, and discussions on the veterinary pharmacist-owner-palliative pet relationship and how compounding pharmacists can prepare patient-specific medications.
Codeine is designated as one of the essential medicines of palliative care for symptoms such as pain and diarrhea. Essential drugs for palliative care are drugs that are effective for the treatment of common symptoms in palliative medicine, easily available, and are affordable. Codeine is recommended for the management of mild to moderate pain and is available as a combination product or as a stand-alone opioid. It is a prodrug and exhibits an affinity to micro-opioid receptors 200 times lower than morphine. Codeine is metabolized in the liver to inactive metabolites, which account for 90 percent of the transformed product, and morphine, which accounts for 10 percent of the transformed product and provides the main analgesic effect. The production of morphine is dependent on cytochrome oxidase 2D6 enzyme activity, which may not be fully active in some populations. The purpose of this review is to examine the efficacy of codeine for common symptoms encountered in palliative medicine, which has led to its designation as an essential medicine for palliative care.
Hudson, Peter; Quinn, Karen; O'Hanlon, Brendan; Aranda, Sanchia
Background Support for family carers is a core function of palliative care. Family meetings are commonly recommended as a useful way for health care professionals to convey information, discuss goals of care and plan care strategies with patients and family carers. Yet it seems there is insufficient research to demonstrate the utlility of family meetings or the best way to conduct them. This study sought to develop multidisciplinary clinical practice guidelines for conducting family meetings in the specialist palliative care setting based on available evidence and consensus based expert opinion. Methods The guidelines were developed via the following methods: (1) A literature review; (2) Conceptual framework; (3) Refinement of the guidelines based on feedback from an expert panel and focus groups with multidisciplinary specialists from three palliative care units and three major teaching hospitals in Melbourne, Australia. Results The literature review revealed that no comprehensive exploration of the conduct and utility of family meetings in the specialist palliative care setting has occurred. Preliminary clinical guidelines were developed by the research team, based on relevant literature and a conceptual framework informed by: single session therapy, principles of therapeutic communication and models of coping and family consultation. A multidisciplinary expert panel refined the content of the guidelines and the applicability of the guidelines was then assessed via two focus groups of multidisciplinary palliative care specialists. The complete version of the guidelines is presented. Conclusion Family meetings provide an opportunity to enhance the quality of care provided to palliative care patients and their family carers. The clinical guidelines developed from this study offer a framework for preparing, conducting and evaluating family meetings. Future research and clinical implications are outlined. PMID:18710576
Kettler, Dietrich; Nauck, Friedemann
To summarize various developments related to palliative care, especially related to ethical issues. To emphasize the involvement of anaesthesiology in palliative care. Euthanasia has been legalized in Belgium, the Netherlands and Luxemburg (BENELUX countries). A group from Belgium has now proposed using euthanasia in patients in whom palliative care has been deemed 'futile'. This practice of so-called 'integral palliative care' is strongly rejected in a study from Germany. Palliative sedation is an ethically different approach with no intention to kill the patient. The European Association of Palliative Care has proposed a framework for individual guidelines for palliative sedation. The important role of anaesthesiology in palliative care teams is emphasized. Palliative care is a powerful approach to patient care during terminal illness, emphasizing quality of life even if it may shorten the length of life. Traditionally, palliative care has been contrasted with active euthanasia, but a group from Belgium has challenged this concept recently, advocating the use of euthanasia in circumstances in which palliative care has become 'futile'. This new approach led to strong reactions by a group from Germany, stressing that killing on demand in palliative care should under no circumstances be justified. In contrast, palliative sedation is a common method in special cases to reduce intractable symptoms. A new framework for palliative sedation produced by the European Association of Palliative Care may encourage institutions to set up their own palliative sedation guidelines. Worldwide, anaesthesiologists have a significant role in palliative care due to their unique complex expertise mainly in pain therapy and including transient sedation of patients.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
To describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. The National Institutes of Health and the National Palliative Care Research Center convened researchers from several medical subspecialties to develop a national agenda for palliative care research. The surgeon work group reviewed the existing surgical literature to identify critical knowledge gaps. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. Priorities for future research on palliative care in surgery include: 1) measuring outcomes that matter to patients, 2) communication and decision making, and 3) delivery of palliative care to surgical patients. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social and spiritual well-being and quality of life. We propose a research agenda to address major gaps in the literature and provide a road map for future investigation.
Nakazawa, Kazuhiro; Kizawa, Yoshiyuki; Maeno, Takami; Takayashiki, Ayumi; Abe, Yasushi; Hamano, Jun; Maeno, Tetsuhiro
To clarify physicians' practices and attitudes regarding advance care planning (ACP) in palliative care units (PCUs) in Japan, we conducted a self-completed questionnaire survey of 203 certificated PCUs in 2010. Ninety-nine physicians participated in the survey. Although most Japanese palliative care physicians recognized the importance of ACP, many failed to implement aspects of patient-directed ACP that they acknowledged to be important, such as recommending completion of advance directives (ADs), designation of health care proxies, and implementing existing ADs. The physicians' general preference for family-centered decision making and their feelings of difficulty and low confidence regarding ACP most likely underlie these results. The discrepancy between physicians' practices and their recognition of the importance of ACP suggests an opportunity to improve end-of-life care. © The Author(s) 2013.
Turriziani, Adriana; Attanasio, Gennaro; Scarcella, Francesco; Sangalli, Luisa; Scopa, Anna; Genualdo, Alessandra; Quici, Stefano; Nazzicone, Giulia; Ricciotti, Maria Adelaide; La Commare, Francesco
In the last decades, palliative care has been more and more focused on the evaluation of patients' and families' satisfaction with care. However, the evaluation of customer satisfaction in palliative care presents a number of issues such as the presence of both patients and their families, the frail condition of the patients and the complexity of their needs, and the lack of standard quality indicators and appropriate measurement tools. In this manuscript, we critically review existing evidence and literature on the evaluation of satisfaction in the palliative care context. Moreover, we provide - as a practical example - the preliminary results of our experience in this setting with the development of a dedicated tool for the measurement of satisfaction.
Tanuseputro, Peter; Budhwani, Suman; Bai, Yu Qing; Wodchis, Walter P
Background: Little population-level information exists about the delivery of palliative care across multiple health sectors, important in providing a complete picture of current care and gaps in care. Aim: Provide a population perspective on end-of-life palliative care delivery across health sectors. Design: Retrospective population-level cohort study, describing palliative care in the last year of life using linked health administrative databases. Setting/participants: All decedents in Ontario, Canada, from 1 April 2010 to 31 March 2012 (n = 177,817). Results: Across all health sectors, about half (51.9%) of all decedents received at least one record of palliative care in the last year of life. Being female, middle-aged, living in wealthier and urban neighborhoods, having cancer, and less multi-morbidity were all associated with higher odds of palliative care receipt. Among 92,276 decedents receiving palliative care, 84.9% received care in acute care hospitals. Among recipients, 35 mean days of palliative care were delivered. About half (49.1%) of all palliative care days were delivered in the last 2 months of life, and half (50.1%) had palliative care initiated in this period. Only about one-fifth of all decedents (19.3%) received end-of-life care through publicly funded home care. Less than 10% of decedents had a record of a palliative care home visit from a physician. Conclusion: We describe methods to capture palliative care using administrative data. Despite an estimate of overall reach (51.9%) that is higher than previous estimates, we have shown that palliative care is infrequently delivered particularly in community settings and to non-cancer patients and occurs close to death. PMID:27317412
Smith, Alexander K; Thai, Julie N; Bakitas, Marie A; Meier, Diane E; Spragens, Lynn H; Temel, Jennifer S; Weissman, David E; Rabow, Michael W
Many health care organizations are interested in instituting a palliative care clinic. However, there are insufficient published data regarding existing practices to inform the development of new programs. Our objective was to obtain in-depth information about palliative care clinics. We conducted a cross-sectional survey of 20 outpatient palliative care practices in diverse care settings. The survey included both closed- and open-ended questions regarding practice size, utilization of services, staffing, referrals, services offered, funding, impetus for starting, and challenges. Twenty of 21 (95%) practices responded. Practices self-identified as: hospital-based (n=7), within an oncology division/cancer center (n=5), part of an integrated health system (n=6), and hospice-based (n=2). The majority of referred patients had a cancer diagnosis. Additional common diagnoses included chronic obstructive pulmonary disease, neurologic disorders, and congestive heart failure. All practices ranked "pain management" and "determining goals of care" as the most common reasons for referrals. Twelve practices staffed fewer than 5 half-days of clinic per week, with 7 operating only one half-day per week. Practices were staffed by a mixture of physicians, advanced practice nurses or nurse practitioners, nurses, or social workers. Eighteen practices expected their practice to grow within the next year. Eleven practices noted a staffing shortage and 8 had a wait time of a week or more for a new patient appointment. Only 12 practices provide 24/7 coverage. Billing and institutional support were the most common funding sources. Most practices described starting because inpatient palliative providers perceived poor quality outpatient care in the outpatient setting. The most common challenges included: funding for staffing (11) and being overwhelmed with referrals (8). Once established, outpatient palliative care practices anticipate rapid growth. In this context, outpatient practices
... HUMAN SERVICES National Institutes of Health Submission for OMB Review; Comment Request: Palliative Care... requested in writing. Proposed Collection: Palliative Care: Conversations Matter Evaluation, -0925-New... Information Collection: NINR developed Palliative Care: Conversations Matter, a pediatric palliative...
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
Chover-Sierra, Elena; Martínez-Sabater, Antonio; Lapeña-Moñux, Yolanda Raquel
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. To report the adaptation into the Spanish language and the psychometric analysis of the Palliative Care Quiz for Nurses. 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). 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. 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. The PCQN-SV is a useful Spanish language
Henner, Natalia; Boss, Renee D
Neonatologists receive highly varied and largely inadequate training to acquire and maintain communication and palliative care skills. Neonatology fellows often need to give distressing news to families and frequently face unique communication challenges. While several approaches to teaching these skills exist, practice opportunities through simulation and role play will likely provide the most effective learning.
Notes that role of psychologist on palliative care unit is to be there for terminally ill, their friends, and their families, both during the dying and the bereavement and for the caregiver team. Focuses on work of decoding ordinary words which for many patients hide painful past. Stresses necessity to remain open to unexpected. (Author/NB)
Cossío-Díaz, José Ramón; Franco González-Salas, José Fernando; Kershenobich-Stalnikowitz, David; Goslinga-Remírez, Lorena; Montes de Oca-Arboleya, Rodrigo; Torres-Morán, Laura Estela; Calderón-Vidal, Mariana
This article analyzes the Mexican regulation on palliative care and its relationship with the public debate on assisted death or suicide. This paper focuses on the rights that people with incurable diseases have, given the current contents of the General Health Statute and other applicable rules. Its main purpose is to activate the public debate on these matters.
... can care start? • Receive services, like art or music therapy • Find ways to relax and play Palliative ... Nurses • Child life specialists • Respite providers • Art and music therapists • Chaplains • Case managers • Counselors • Home health aides • ...
Harrison, Nadine; Cavers, Debbie; Campbell, Christine; Murray, Scott A
The palliative care approach has the potential to improve care for patients with progressive life-threatening illnesses from the time of diagnosis. Policy and clinical directives in the UK advocate early identification. To determine the extent to which practices identify patients for palliative care, including factors influencing early identification and possible effects on place of death. Qualitative and quantitative data were collected from six general practices from three Scottish NHS boards and analysed. Records of patients who had died in the previous 6 months were analysed and interviews with practice staff (n = 21) and with patients currently on the practice palliative care register and bereaved relatives (n = 14) were conducted. In addition, a practice meeting was observed. In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Two-thirds of patients with cancer were recorded on the register, but for those with non-malignant conditions only around 20% had any palliative care documented. This was a result of GPs not finding the current guidelines useful and being reluctant to discuss palliative care overtly with patients early in their illness. Palliative care services and documentation were geared towards patients with cancer. More district nurses than GPs saw the benefits of inclusion on the palliative care register. Only 25% of patients on the register died in hospital. Most patients with advanced progressive illnesses, especially those with non-malignant disease, are not being formally identified for a palliative care approach before they die. Those identified are more likely to benefit from coordinated care and may be more likely to die at home.
Robinson, Jackie; Gott, Merryn; Gardiner, Clare; Ingleton, Christine
Government policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation's recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate about what form comprehensive palliative care services should take, particularly in relation to the balance between acute and community based services. It is therefore timely to review how national policy positions the current and future role of the acute hospital in palliative care provision. The aim of this exploratory review is to identify the role envisaged for the acute hospital in palliative and end of life care provision in five countries with an 'advanced' level of integration. Countries were identified using the Global Atlas of Palliative Care. Policies were accessed through internet searching of government websites between October and December 2014. Using a process of thematic analysis key themes related to palliative care in hospital were identified. Policies from Switzerland, England, Singapore, Australia and Ireland were analysed for recurring themes. Three themes were identified: preferences for place of care and place of death outside the hospital setting, unnecessary or avoidable hospital admissions, and quality of care in hospital. No policy focused upon exploring how palliative care could be improved in the hospital setting or indeed what role the hospital may have in the provision of palliative care. Palliative care policy in five countries with 'advanced' levels of palliative care integration focuses on solving the 'problems' associated with hospital as a place of palliative care and death. No positive role for hospitals in palliative care provision is envisaged. Given the rapidly increasing population of people requiring palliative care, and emerging evidence that patients themselves report benefits of hospital
Cook, A M; Finlay, I G; Edwards, A G; Hood, K; Higginson, I J; Goodwin, D M; Normand, C E; Douglas, H R
A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.
Porterfield, Pat; Roberts, Della; Lee, Joyce; Liang, Leah; Reimer-Kirkham, Sheryl; Pesut, Barb; Schalkwyk, Tilly; Stajduhar, Kelli; Tayler, Carolyn; Baumbusch, Jennifer; Thorne, Sally
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
WIENER, LORI; MCCONNELL, DENICE GRADY; LATELLA, LAUREN; LUDI, ERICA
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
LeBlanc, Thomas W.; Lodato, Jordan E.; Currow, David C.; Abernethy, Amy P.
Purpose: Palliative care is increasingly viewed as a necessary component of cancer care, especially for patients with advanced disease. Rigorous clinical trials are thus needed to build the palliative care evidence base, but clinical research—especially participant recruitment—is difficult. Major barriers include (1) patient factors, (2) “gatekeeping,” and (3) ethical concerns. Here we discuss an approach to overcoming these barriers, using the Palliative Care Trial (PCT) as a case study. Patients and Methods: The PCT was a 2 × 2 × 2 factorial randomized controlled trial (RCT) of different service delivery models to improve pain control in the palliative setting. It used a recruitment protocol that fused evidence-based strategies with principles of “social marketing,” an approach involving the systematic application of marketing techniques. Main components included (1) an inclusive triage algorithm, (2) information booklets targeting particular stakeholders, (3) a specialized recruitment nurse, and (4) standardization of wording across all study communications. Results: From an eligible pool of 607 patients, the PCT enrolled 461 patients over 26 months. Twenty percent of patients referred to the palliative care service were enrolled (76% of those eligible after screening). Several common barriers were minimized; among those who declined participation, family disinterest was uncommon (5%), as was the perception of burden imposed (4%). Conclusion: Challenges to clinical trial recruitment in palliative care are significant but not insurmountable. A carefully crafted recruitment and retention protocol can be effective. Our experience with designing and deploying a social-marketing–based protocol shows the benefits of such an approach. PMID:24130254
Trueman, Ian; Parker, Jonathan
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
Midorikawa, Yasuhiko; Suzushino, Seiko; Tamotsu, Kiyokazu
We conducted home care and home palliative care from the department of home care. We provided home care services to 190 patients(105 men, 85 women)in October 2013. Their average age was 78.7(range: 32-102)years old, and home care had been underway from 1 day to 8 years, 10 months. Among all participants, 168(88.4%)suffered from malignant diseases, 168 patients had died, and over half of deceased patients(88 out of 168)had died at home. We used opioids for control of cancer pain, carried out home parenteral nutrition(HPN), home enteral nutrition(HEN), percutaneous endoscopic gastrostomy( PEG), and removed pleural effusion and ascites during home care. In order to facilitate the practice of palliative care by the palliative care team, which consists of various medical staff in the hospital, we are giving high priority to education and enlightenment in the hospital. To provide enlightenment, education, and cooperation between regional home care and home palliative care, we are also conducting educational lectures in the regional party of the Iwaki city medical associate, and providing combined educational-medical training for home care and home palliative care by various medical staff.
Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R
Palliative care services have been reported to be a less expensive alternative to traditional treatment; however, little is known about how to measure the cost of delivering quality palliative care. The purpose of this project was to develop a standardized method for measuring the cost of palliative care delivery that could potentially be replicated in multiple settings. The project was implemented in three stages. First, an interdisciplinary group of palliative care experts identified standards of quality palliative care delivery in the inpatient and home care services. Surveys were conducted of government agencies and palliative care providers to identify payment practices and budgets for palliative care services. In the second phase, unit costs were defined and a costing framework was designed to measure inpatient and home-based palliative care unit costs. The final phase was advocacy for inclusion of calculated costs into the national funding system. In this project, a reliable framework for determining the cost of inpatient and home-based palliative care services was developed. Inpatient palliative care cost in Romania was calculated at $96.58 per day. Home-based palliative care was calculated at $30.37 per visit, $723.60 per month, and $1367.71 per episode of care, which averaged 45 visits. A standardized methodology and framework for costing palliative care are presented. The framework allows a country or provider of care to substitute their own local costs to generate cost information relevant to the health-care system. In Romania, this allowed the palliative care provider community to advocate for a consistent payment system. Copyright © 2014 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Marçola, Ligia; de Barbosa, Silvia Maria Macedo; Zoboli, Ivete; Polastrini, Rita Tiziana Verardo; Ceccon, Maria Esther Jurfest
ABSTRACT Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores. Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children. PMID:28977325
Ganzel, Barbara L
This review highlights the need to integrate trauma-informed practices into hospice and palliative care. The pervasiveness of psychological trauma exposure has been established in the general population and among the elderly adults. Moreover, there is emerging evidence for multiple additional opportunities for exposure to psychological trauma at or near the end of life. For example, many people experience intensive medical interventions prior to their admission to hospice and/or palliative care, and there is increasing recognition that these interventions may be traumatic. These and related opportunities for trauma exposure may combine synergistically at the end of life, particularly in the presence of pain, anxiety, delirium, dementia, or ordinary old age. This, in turn, can negatively affect patient mental health, well-being, behavior, and reported experience of pain. This review closes with suggestions for future research and a call for universal assessment of psychological trauma history and symptoms in hospice and palliative care patients, along with the development of palliative trauma intervention strategies appropriate to these populations. © The Author 2016. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: firstname.lastname@example.org.
Harrison Dening, Karen
Dementia is a life-limiting condition that is largely a disease of ageing. However, older people in general, and older people with dementia in particular, have not always had equal access to effective palliative and end of life care. As a result, people with dementia at the end of life often receive aggressive and burdensome interventions, or inadequate assessment and management of their symptoms. Patterns in how people with dementia experience and present symptoms as they near the end of life can indicate when the goals of care should change and a palliative approach should be adopted.
Edwards, Asher; Nam, Samuel
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.
Lim, Christopher T; Tadmor, Avia; Fujisawa, Daisuke; MacDonald, James J; Gallagher, Emily R; Eusebio, Justin; Jackson, Vicki A; Temel, Jennifer S; Greer, Joseph A; Hagan, Teresa; Park, Elyse R
While vast opportunities for using qualitative methods exist within palliative care research, few studies provide practical advice for researchers and clinicians as a roadmap to identify and utilize such opportunities. To provide palliative care clinicians and researchers descriptions of qualitative methodology applied to innovative research questions relative to palliative care research and define basic concepts in qualitative research. Body: We describe three qualitative projects as exemplars to describe major concepts in qualitative analysis of early palliative care: (1) a descriptive analysis of clinician documentation in the electronic health record, (2) a thematic content analysis of palliative care clinician focus groups, and (3) a framework analysis of audio-recorded encounters between patients and clinicians as part of a clinical trial. This study provides a foundation for undertaking qualitative research within palliative care and serves as a framework for use by other palliative care researchers interested in qualitative methodologies.
Cronfalk, Berit Seiger; Ternestedt, Britt-Marie; Larsson, Lise-Lotte Franklin; Henriksen, Eva; Norberg, Astrid; Österlind, Jane
This study is part of the overarching PVIS (Palliative Care in Nursing Homes) project aimed at building competence in palliative care for nursing home staff. Our objective was to describe nursing home staff's attitudes to competence-building programs in palliative care. Three different programs were developed by specialist staff from three local palliative care teams. In all, 852 staff at 37 nursing homes in the greater Stockholm area participated. Staff from 7 nursing homes participated in 11 focus-group discussions. Variation in size between the seven nursing homes initiated purposeful selection of staff to take part in the discussions, and descriptive content analysis was used. The results suggest that staff reported positive experiences as they gained new knowledge and insight into palliative care. The experiences seemed to be similar independent of the educational program design. Our results also show that staff experienced difficulties in talking about death. Enrolled nurses and care assistants felt that they carried out advanced care without the necessary theoretical and practical knowledge. Further, the results also suggest that lack of support from ward managers and insufficient collaboration and of a common language between different professions caused tension in situations involved in caring for dying people. Nursing home staff experienced competence-building programs in palliative care as useful. Even so, further competence is needed, as is long-term implementation strategies and development of broader communication skills among all professions working in nursing homes.
Adames, Hector Y; Chavez-Dueñas, Nayeli Y; Fuentes, Milton A; Salas, Silvia P; Perez-Chavez, Jessica G
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.
Coulibaly, J Didi-Kouko; Datie, A-M; Binlin-Dadie, R; Kouame, I; N'guessan, Zc; Barouan, M-C; Koffi, E; Coulibaly, I; Mensah, J; Yenou, H Memain; Dedomey, E; Echimane, Ka; Plo, Kj; Kouassi, B
Ivory Coast adhered to the strategy of the primary cares of health whose leading principles served basis to the definition of the National politics of sanitary development, exposed in the National plan of sanitary development 1996-2005. The improvement of the quality of the cares is the main objective of this plan. The attack of this objective cannot make itself without the hold in account of the palliative cares that are a component of the cares for the patients affected by chronic and incurable affections, since the diagnosis until the death and even after the death. Conscious of the necessity to develop the palliative cares to improve the quality of life of the patients and their families, the ministry in charge of health, in collaboration with the partners to the development, initiated a project of development of the palliative care in Ivory Coast. It is about an innovating gait in Ivory Coast concerning politics of health. This work has for goal to present the big lines and the setting in which this politics has been put in place.
Duenk, RG; Verhagen, C; Dekhuijzen, PNR; Vissers, KCP; Engels, Y; Heijdra, Y
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
McCarthy, Mark; Brajovic, Mina
Introduction Montenegro, a newly independent Balkan state with a population of 650,000, has a health care reform programme supported by the World Bank. This paper describes planning for integrated elderly and palliative care. Description The current service is provided only through a single long-stay hospital, which has institutionalised patients and limited facilities. Broad estimates were made of current financial expenditures on elderly care. A consultation was undertaken with stakeholders to propose an integrated system linking primary and secondary health care with social care; supporting people to live, and die well, at home; developing local nursing homes for people with higher dependency; creating specialised elderly-care services within hospitals; and providing good end-of-life care for all who need it. Effectiveness may be measured by monitoring patient and carers’ perceptions of the care experience. Discussion Changes in provision of elderly care may be achieved through redirection of existing resources, but the health and social care services also need to enhance elderly care budgets. The challenges for implementation include management skills, engaging professionals and political commitment. Conclusion Middle-income countries such as Montenegro can develop elderly and palliative care services through redirection of existing finance if accompanied by new service objectives, staff skills and integrated management. PMID:19513178
Read, Paul; Stukenborg, George; Dillon, Patrick; Barclay, Joshua; Romano, Andrew; Harrison, James
Abstract Background: Studies suggest that outpatient palliative care can reduce hospitalization and increase hospice utilization for patients with cancer, however there are insufficient resources to provide palliative care to all patients from time of diagnosis. It is also unclear whether inpatient consultation alone provides similar benefits. A better understanding of the timing, setting, and impact of palliative care for patients with cancer is needed. Objectives: The purpose of this study was to measure timing of referral to outpatient palliative care and impact on end-of-life (EOL) care. Design: The Comprehensive Assessment with Rapid Evaluation and Treatment (CARE Track) program is a phased intervention integrating outpatient palliative care into cancer care. In Year 1 patients were referred at the discretion of their oncologist. Setting: Academic medical center. Measurements: We compared EOL hospitalization, hospice utilization, and costs of care for CARE Track patients compared to those never seen by palliative care or seen only in hospital. Results: Patients were referred a median of 72.5 days prior to death. CARE Track patients had few hospitalizations at end of life, were less likely to die in hospital, had increased hospice utilization, and decreased costs of care; these results were significant even after controlling for differences between groups. Inpatient consultation alone did not impact these variables. However, only approximately half of patients with incurable cancers were referred to this program. Conclusion: Referral outpatient palliative care within 3 months of death improved EOL care and reduced costs, benefits not seen with inpatient care only. However, many patients were never referred, and methods of systematically identifying appropriate patients are needed. PMID:26624851
Labson, Margherita C; Sacco, Michele M; Weissman, David E; Gornet, Betsy; Stuart, Brad
The focus of palliative care is to alleviate pain and suffering for patients, potentially while they concurrently pursue life-prolonging or curative therapy. The potential breadth of palliative care is recognized by the Medicare program, but the Medicare hospice benefit is narrowly defined and limited to care that is focused on comfort and not on cure. Any organization or setting that has been accredited or certified to provide health care may provide palliative care. Home health agencies are highly attuned to patients' need for palliative care, and often provide palliative care for patients who are ineligible for hospice or have chosen not to enroll in it. Two home health-based programs have reported improved patient satisfaction, better utilization of services, and significant cost savings with palliative care. Moving the focus of care from the hospital to the home and community can be achieved with integrated care and can be facilitated by changes in government policy.
Suvarnabhumi, Krishna; Sowanna, Non; Jiraniramai, Surin; Jaturapatporn, Darin; Kanitsap, Nonglak; Soorapanth, Chiroj; Thanaghumtorn, Kanate; Limratana, Napa; Akkayagorn, Lanchasak; Staworn, Dusit; Praditsuwan, Rungnirand; Uengarporn, Naporn; Sirithanawutichai, Teabaluck; Konchalard, Komwudh; Tangsangwornthamma, Chaturon; Vasinanukorn, Mayuree; Phungrassami, Temsak
The Thai Medical School Palliative Care Network conducted this study to establish the current state of palliative care education in Thai medical schools. A questionnaire survey was given to 2 groups that included final year medical students and instructors in 16 Thai medical schools. The questionnaire covered 4 areas related to palliative care education. An insufficient proportion of students (defined as fewer than 60%) learned nonpain symptoms control (50.0%), goal setting and care planning (39.0%), teamwork (38.7%), and pain management (32.7%). Both medical students and instructors reflected that palliative care education was important as it helps to improve quality of care and professional competence. The percentage of students confident to provide palliative care services under supervision of their senior, those able to provide services on their own, and those not confident to provide palliative care services were 57.3%, 33.3%, and 9.4%, respectively. The lack of knowledge in palliative care in students may lower their level of confidence to practice palliative care. In order to prepare students to achieve a basic level of competency in palliative care, each medical school has to carefully put palliative care content into the undergraduate curriculum.
McCulloch, Renée; Comac, Maggie; Craig, Finella
Palliative care in children has been emerging as a clinical subspecialty of paediatrics for many years. It requires the knowledge and experience of a paediatrician, combined with the skills of a palliative care specialist. Both are essential, as a paediatrician may not have advanced knowledge of palliative care and a palliative care specialist is unlikely to be familiar with the complexity of working with families where the child is the patient. This paper reviews recent literature and discusses advances in the development of palliative care services for children and young people with incurable cancer. It highlights key areas where paediatric palliative care differs from that of adults and outlines the barriers to providing palliation and conducting evidence-based research in children and young people dying from cancer.
As the music therapy profession has developed internationally over the last 25 years, so has its role in palliative care. Music is a highly versatile and dynamic therapeutic modality, lending itself to a variety of music therapy techniques used to benefit both those living with life-threatening illnesses and their family members and caregivers. This article will give a broad overview of the historical roots of music therapy and introduce the techniques that are employed in current practice. By combining a review of mainstream music therapy practice involving musical improvisation, song-writing and receptive/recreational techniques with case material from my own experience, this article aims to highlight the potential music therapy holds as an effective holistic practice for palliative care, whatever the care setting.
As the spiritual care needs of patients and their loved ones have become an essential component of palliative care, clinicians are being challenged to develop new ways of addressing the spiritual issues that often arise in the palliative care setting. Recent research has given attention to the communication strategies that are effective with patients or their loved ones who report that they are seeking a miraculous physical healing. However, these strategies often assume a unilateral rather than collaborative view of divine intervention. Communication strategies that are effective with unilateral understandings of divine intervention may be contraindicated with those who hold to a collaborative view of divine intervention. Greater attention to language of human-divine interaction along with approaching faith healing as a third modality of treatment are explored as additional interventions.
Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni
Background: Early palliative care is increasingly recommended but seldom practised. We sought to examine perceptions of palliative care among patients with advanced cancer and their caregivers. Methods: After conducting a cluster randomized controlled trial of early palliative care versus standard care for patients with advanced cancer, we approached patients and their caregivers to participate in semistructured interviews seeking to assess, qualitatively, their attitudes and perceptions about palliative care. We used the grounded theory method for data collection and analysis. Results: A total of 48 patients (26 intervention, 22 control) and 23 caregivers (14 intervention, 9 control) completed interviews. Participants’ initial perceptions of palliative care in both trial arms were of death, hopelessness, dependency and end-of-life comfort care for inpatients. These perceptions provoked fear and avoidance, and often originated from interactions with health care professionals. During the trial, those in the intervention arm developed a broader concept of palliative care as “ongoing care” that improved their “quality of living” but still felt that the term itself carried a stigma. Participants in the intervention group emphasized the need for palliative care to be reframed and better explained by health care professionals. Participants in the control group generally considered it pointless to rename palliative care, but many in the intervention group stated emphatically that a different name was necessary in the early outpatient setting. Interpretation: There is a strong stigma attached to palliative care, which may persist even after positive experiences with an early palliative care intervention. Education of the public, patients and health care providers is paramount if early integration of palliative care is to be successful. PMID:27091801
Bueno Pernias, Maria José; Hueso Montoro, César; Guardia Mancilla, Plácido; Montoya Juárez, Rafael; García Caro, Maria Paz
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
Mantz, M; Crandall, J M
With the rising age of the population, hospital cutbacks, and increased attention to home-based care for the dying, the community can expect to experience more intense care situations and a greater potential for palliative care crises developing in the home setting. Whether the crisis is precipitated by hemorrhage, severe uncontrolled pain, or agitation, the demands placed on the family unit and careprovider can be phenomenal. Only with a greater awareness of the difficulties encountered in the home setting can the community begin to respond to the needs of the family in crisis. An open-question survey regarding palliative care crises in the community was conducted among community visiting RNs, home care case managers, and palliative outreach clinicians in southwestern Ontario, The objectives were: 1) to determine the pattern of events that precipitated a crisis; 2) to understand how crises were managed; 3) to identify barriers to effective crisis management; 4) to investigate the impact on the family unit and careprovider. Participants were also asked to list the essential resources they needed to deal effectively with a crisis situation. This paper highlights the results of the survey and suggests implications for the future direction of palliative care in the home.
Blackhall, Leslie J; Read, Paul; Stukenborg, George; Dillon, Patrick; Barclay, Joshua; Romano, Andrew; Harrison, James
Studies suggest that outpatient palliative care can reduce hospitalization and increase hospice utilization for patients with cancer, however there are insufficient resources to provide palliative care to all patients from time of diagnosis. It is also unclear whether inpatient consultation alone provides similar benefits. A better understanding of the timing, setting, and impact of palliative care for patients with cancer is needed. The purpose of this study was to measure timing of referral to outpatient palliative care and impact on end-of-life (EOL) care. The Comprehensive Assessment with Rapid Evaluation and Treatment (CARE Track) program is a phased intervention integrating outpatient palliative care into cancer care. In Year 1 patients were referred at the discretion of their oncologist. Academic medical center. We compared EOL hospitalization, hospice utilization, and costs of care for CARE Track patients compared to those never seen by palliative care or seen only in hospital. Patients were referred a median of 72.5 days prior to death. CARE Track patients had few hospitalizations at end of life, were less likely to die in hospital, had increased hospice utilization, and decreased costs of care; these results were significant even after controlling for differences between groups. Inpatient consultation alone did not impact these variables. However, only approximately half of patients with incurable cancers were referred to this program. Referral outpatient palliative care within 3 months of death improved EOL care and reduced costs, benefits not seen with inpatient care only. However, many patients were never referred, and methods of systematically identifying appropriate patients are needed.
Stjernswärd, Jan; Ferris, Frank D; Khleif, Samir N; Jamous, Walid; Treish, Imad M; Milhem, Mohammed; Bushnaq, Mohammed; Al Khateib, Ahmad; Al Shtiat, Mohammad Nayef; Wheeler, Mary S; Alwan, Ala
A model for pain relief and palliative care for the Middle East has been established in Jordan. King Hussein Cancer Centre (KHCC) in Amman is now a truly comprehensive cancer center as it includes palliative care for inpatients, outpatients, and patients at home. This is especially important in a country and a region where over 75% of the cancer patients are incurable when diagnosed. To support effective palliative care delivery, there have been many significant changes in Jordan between 2001 and 2006. Regulations governing opioid prescribing have been changed to facilitate effective pain management. The national opioid quota has been increased. Cost-effective, generic, immediate-release morphine tablets are being produced in Jordan. Intensive, interactive bedside training courses for doctors, nurses, and clinical pharmacologists have started to overcome opiophobia and motivate health care professionals to take up palliative care as a profession. "Champions" for palliative care have emerged who are leading the development of palliative care in Jordan's health care systems and starting to support neighboring countries to develop pain relief and palliative care. While before 2003, fewer than 250 patients per year received palliative care, by 2006 more than 800 patients per year were receiving pain relief and palliative care through the KHCC and Al Basheer Hospital. The achieved changes and the unusually rapid and effective institutionalization of palliative care serve as a model for other countries in the Middle East region as to what should be done and how.
Brown, J. B.; Sangster, M.; Swift, J.
OBJECTIVE: To examine factors that influence family physicians' decisions to practise palliative care. DESIGN: Qualitative method of in-depth interviews. SETTING: Southwestern Ontario. PARTICIPANTS: Family physicians who practise palliative care on a full-time basis, who practise on a part-time basis, or who have retired from active involvement in palliative care. METHOD: Eleven in-depth interviews were conducted to explore factors that influence family physicians' decisions to practise palliative care and factors that sustain their interest in palliative care. All interviews were audiotaped and transcribed verbatim. The analysis strategy used a phenomenological approach and occurred concurrently rather than sequentially. All interview transcriptions were read independently by the researchers, who then compared and combined their analyses. Final analysis involved examining all interviews collectively, thus permitting relationships between and among central themes to emerge. MAIN OUTCOME FINDINGS: The overriding theme was a common philosophy of palliative care focusing on acceptance of death, whole person care, compassion, communication, and teamwork. Participants' philosophies were shaped by their education and by professional and personal experiences. In addition, participants articulated personal and systemic factors currently affecting their practice of palliative care. CONCLUSIONS: Participants observed that primary care physicians should be responsible for their patients' palliative care within the context of interdisciplinary teams. For medical students to be knowledgeable and sensitive to the needs of dying patients, palliative care should be given higher priority in the curriculum. Finally, participants argued compellingly for transferring the philosophy of palliative care to the overall practice of medicine. PMID:9612588
Kavalieratos, Dio; Corbelli, Jennifer; Zhang, Di; Dionne-Odom, J. Nicholas; Ernecoff, Natalie C.; Hanmer, Janel; Hoydich, Zachariah P.; Ikejiani, Dara Z.; Klein-Fedyshin, Michele; Zimmermann, Camilla; Morton, Sally C.; Arnold, Robert M.; Heller, Lucas; Schenker, Yael
IMPORTANCE The use of palliative care programs and the number of trials assessing their effectiveness have increased. OBJECTIVE To determine the association of palliative care with quality of life (QOL), symptom burden, survival, and other outcomes for people with life-limiting illness and for their caregivers. DATA SOURCES MEDLINE, EMBASE, CINAHL, and Cochrane CENTRAL to July 2016. STUDY SELECTION Randomized clinical trials of palliative care interventions in adults with life-limiting illness. DATA EXTRACTION AND SYNTHESIS Two reviewers independently extracted data. Narrative synthesis was conducted for all trials. Quality of life, symptom burden, and survival were analyzed using random-effects meta-analysis, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy–palliative care scale (FACIT-Pal) instrument (range, 0–184 [worst-best]; minimal clinically important difference [MCID], 9 points); and symptom burden translated to the Edmonton Symptom Assessment Scale (ESAS) (range, 0–90 [best-worst]; MCID, 5.7 points). MAIN OUTCOMES AND MEASURES Quality of life, symptom burden, survival, mood, advance care planning, site of death, health care satisfaction, resource utilization, and health care expenditures. RESULTS Forty-three RCTs provided data on 12 731 patients (mean age, 67 years) and 2479 caregivers. Thirty-five trials used usual care as the control, and 14 took place in the ambulatory setting. In the meta-analysis, palliative care was associated with statistically and clinically significant improvements in patient QOL at the 1- to 3-month follow-up (standardized mean difference, 0.46; 95%CI, 0.08 to 0.83; FACIT-Pal mean difference, 11.36] and symptom burden at the 1- to 3-month follow-up (standardized mean difference, −0.66; 95%CI, −1.25 to −0.07; ESAS mean difference, −10.30). When analyses were limited to trials at low risk of bias (n = 5), the association between palliative care and QOL was attenuated
Pop, Teresa; Adamek, Jolanta
Active and passive physical exercises in patients under palliative (long term) care in palliative wards and home hospices are a necessary means of prevention or reduction of pulmonary complications, disorders of respiratory function, vascular complications, disorders of lymphatic and venous function, and musculoskeletal dysfunction. The goal of this study was to assess the dynamics of physical activity in patients under long term care. The study group consisted of 60 patients staying in a palliative care ward or a home hospice. The dynamics of physical ability was assessed with the Karnofsky Performance Scale, and the quality of life was evaluated using the 6-point scale of the Rotterdam Symptom Checklist. The study was conducted over eight weeks, with patient information recorded once a week. Over consecutive weeks, physical activity increased by 10-20% in 20% of the participants, did not change in 36% of the participants, and 44% of the study group showed a decrease in activity. We found an increase in the quality of life in the consecutive weeks of the study and a correlation with the physical activity level. A higher score on the Karnofsky Scale corresponded with a higher quality of life measured in the six-point scale of the Rotterdam Symptom Checklist. Significant correlations were found both for specific weeks and for the entire study period. 1. The rehabilitation of palliative care patients resulted in a significant improvement in the quality of life. 2. The results indicate that there is a need to provide palliative patients with optimum rehabilitation regardless of their pre-rehabilitation clinical status. 3. The Karnofsky Performance Scale and the Rotterdam Symptom Checklist are strongly correlated with each other, which makes them robust investigative instruments for evaluating palliative patients.
Aziz, Noreen M.; Basch, Ethan; Bull, Janet; Cleeland, Charles S.; Currow, David C.; Fairclough, Diane; Hanson, Laura; Hauser, Joshua; Ko, Danielle; Lloyd, Linda; Morrison, R. Sean; Otis-Green, Shirley; Pantilat, Steve; Portenoy, Russell K.; Ritchie, Christine; Rocker, Graeme; Wheeler, Jane L.; Zafar, S. Yousuf; Kutner, Jean S.
Abstract Background Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. Methods A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. Results : The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success. PMID:21105763
Confronted with the complexities inherent in delivering palliative care, effective collaboration with referring staff becomes vital. Based on the evaluation of the physical and psychosocial concerns of patients, the goal of palliative care is to craft interventions that maintain quality of life in the face of increasing symptoms and deteriorating functional status. The project's goal was to increase the appropriateness of referrals to palliative care by the primary services in the hospital. The aim was to achieve this by developing a process to assess patient functioning in critical psychosocial and functional areas, and providing this data to referring medical staff to educate them on the contribution of palliative care to symptom control and patient quality of life. The findings show that referrals to palliative care have increased over 100% from a broader range of services since initiating this project. Assessment data has been collected on 165 patients and outcomes are discussed.
Visser, Claire; Hadley, Gina; Wee, Bee
There has been a paradigm shift in medicine away from tradition, anecdote and theoretical reasoning from the basic sciences towards evidence-based medicine (EBM). In palliative care however, statistically significant benefits may be marginal and may not be related to clinical meaningfulness. The typical treatment vs. placebo comparison necessitated by ‘gold standard’ randomised controlled trials (RCTs) is not necessarily applicable. The complex multimorbidity of end of life care involves considerations of the patient’s physical, psychological, social and spiritual needs. In addition, the field of palliative care covers a heterogeneous group of chronic and incurable diseases no longer limited to cancer. Adequate sample sizes can be difficult to achieve, reducing the power of studies and high attrition rates can result in inadequate follow up periods. This review uses examples of the management of cancer-related fatigue and death rattle (noisy breathing) to demonstrate the current state of EBM in palliative care. The future of EBM in palliative care needs to be as diverse as the patients who ultimately derive benefit. Non-RCT methodologies of equivalent quality, validity and size conducted by collaborative research networks using a ‘mixed methods approach’ are likely to pose the correct clinical questions and derive evidence-based yet clinically relevant outcomes. PMID:26487964
Shaw, Clare; Eldridge, Lucy
Many palliative care patients experience nutritional problems as their conditions progress. This includes those with progressive neurological conditions, chronic obstructive pulmonary disease (COPD) as well as advanced cancer. Nutritional issues not only impact patients physically but also psychologically and can also have an effect on those caring for them. It is important that patients are screened appropriately and that one identifies what symptoms are potentially affecting their intake. Decisions should always be patient-centred. Nutritional interventions range from food modification and nutritional supplements, to more intense methods such as enteral or parenteral nutrition, and these may have ethical and legal considerations. This article explores the nutritional issues faced by palliative patients, the ethical issues supporting decision-making and the methods of nutritional support available.
Pelant, Diane; McCaffrey, Terri; Beckel, Jean
Palliative care, long-used in the adult setting, is new to the pediatric setting. Research indicates that palliative care reduces length of stay and use of aggressive end-of-life interventions, improves quality of life, and provides hope. It balances provision of coordinated care with building of family memories and preparation for the child's death with celebration of the child's life. We advocate implementation of pediatric palliative care in any hospital that cares for children. This article provides a model outlining critical steps and considerations for establishing a successful pediatric palliative care program.
Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil
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.
Benyó, Gábor; Lukács, Miklós; Busa, Csilla; Mangel, László; Csikós, Ágnes
Modern palliative-hospice care has gained space in Europe for more than 50 years. Since the initial empirical work of Cicely Saunders, palliative medicine has gained its place in evidence-based medicine in more and more countries. However, development, as in many other medical fields, is not uniform, there are big differences between countries in the world. There are also significant differences in development of care and the level of services within the European Union amongst Western and Eastern European countries. These differences affect the professional approach, legislative mechanisms and social acceptance. Hungarian palliative-hospice care has developed significantly over the past 15 years. For further development thoughtful strategic steps and service development is needed. The integration of palliative care into standard oncology is an international requirement, which also appears in the form of professional guidelines. Hungary has also played a role in the development of the European model of integrated palliative care of which Hungarian implementation, the "Pécs model", is discussed in detail in our paper.
Abernethy, Amy P; Aziz, Noreen M; Basch, Ethan; Bull, Janet; Cleeland, Charles S; Currow, David C; Fairclough, Diane; Hanson, Laura; Hauser, Joshua; Ko, Danielle; Lloyd, Linda; Morrison, R Sean; Otis-Green, Shirley; Pantilat, Steve; Portenoy, Russell K; Ritchie, Christine; Rocker, Graeme; Wheeler, Jane L; Zafar, S Yousuf; Kutner, Jean S
Palliative medicine has made rapid progress in establishing its scientific and clinical legitimacy, yet the evidence base to support clinical practice remains deficient in both the quantity and quality of published studies. Historically, the conduct of research in palliative care populations has been impeded by multiple barriers including health care system fragmentation, small number and size of potential sites for recruitment, vulnerability of the population, perceptions of inappropriateness, ethical concerns, and gate-keeping. A group of experienced investigators with backgrounds in palliative care research convened to consider developing a research cooperative group as a mechanism for generating high-quality evidence on prioritized, clinically relevant topics in palliative care. The resulting Palliative Care Research Cooperative (PCRC) agreed on a set of core principles: active, interdisciplinary membership; commitment to shared research purposes; heterogeneity of participating sites; development of research capacity in participating sites; standardization of methodologies, such as consenting and data collection/management; agile response to research requests from government, industry, and investigators; focus on translation; education and training of future palliative care researchers; actionable results that can inform clinical practice and policy. Consensus was achieved on a first collaborative study, a randomized clinical trial of statin discontinuation versus continuation in patients with a prognosis of less than 6 months who are taking statins for primary or secondary prevention. This article describes the formation of the PCRC, highlighting processes and decisions taken to optimize the cooperative group's success.
Kozlov, Elissa; Carpenter, Brian D; Rodebaugh, Thomas L
The purpose of this study was to develop a reliable and valid scale that broadly measures knowledge about palliative care among non-healthcare professionals. An initial item pool of 38 true/false questions was developed based on extensive qualitative and quantitative pilot research. The preliminary items were tested with a community sample of 614 adults aged 18-89 years as well as 30 palliative care professionals. The factor structure, reliability, stability, internal consistency, and validity of the 13-item Palliative Care Knowledge Scale (PaCKS) were assessed. The results of our study indicate that the PaCKS meets or exceeds the standards for psychometric scale development. Prior to this study, there were no psychometrically evaluated scales with which to assess knowledge of palliative care. Our study developed the PaCKS, which is valid for assessing knowledge about palliative services in the general population. With the successful development of this instrument, new research exploring how knowledge about palliative care influences access and utilization of the service is possible. Prior research in palliative care access and utilization has not assessed knowledge of palliative care, though many studies have suggested that knowledge deficits contribute to underutilization of these services. Creating a scale that measures knowledge about palliative care is a critical first step toward understanding and combating potential barriers to access and utilization of this life-improving service.
Schmiedebach, H-P; Woellert, K
Many of the judicial and ethical questions raised by euthanasia are still the subject of controversial discussions. In this context the article broaches the issues of the doctor- patient relationship, patient's right to autonomy, and advance directive. It deals with the present judicial possibilities of euthanasia in Germany with reference to the situation in the Netherlands. Finally, there is an outlook on the role of palliative care and of hospices.
Haun, Markus W; Estel, Stephanie; Rücker, Gerta; Friederich, Hans-Christoph; Villalobos, Matthias; Thomas, Michael; Hartmann, Mechthild
Incurable cancer, which often constitutes an enormous challenge for patients, their families, and medical professionals, profoundly affects the patient's physical and psychosocial well-being. In standard cancer care, palliative measures generally are initiated when it is evident that disease-modifying treatments have been unsuccessful, no treatments can be offered, or death is anticipated. In contrast, early palliative care is initiated much earlier in the disease trajectory and closer to the diagnosis of incurable cancer. To compare effects of early palliative care interventions versus treatment as usual/standard cancer care on health-related quality of life, depression, symptom intensity, and survival among adults with a diagnosis of advanced cancer. We searched the Cochrane Central Register of Controlled Trials (CENTRAL), MEDLINE, Embase, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, OpenGrey (a database for grey literature), and three clinical trial registers to October 2016. We checked reference lists, searched citations, and contacted study authors to identify additional studies. Randomised controlled trials (RCTs) and cluster-randomised controlled trials (cRCTs) on professional palliative care services that provided or co-ordinated comprehensive care for adults at early advanced stages of cancer. We used standard methodological procedures as expected by Cochrane. We assessed risk of bias, extracted data, and collected information on adverse events. For quantitative synthesis, we combined respective results on our primary outcomes of health-related quality of life, survival (death hazard ratio), depression, and symptom intensity across studies in meta-analyses using an inverse variance random-effects model. We expressed pooled effects as standardised mean differences (SMDs, or Hedges' adjusted g). We assessed certainty of evidence at the outcome level using GRADE (Grading of Recommendations Assessment, Development, and
Wittenberg, Elaine; Ferrell, Betty; Goldsmith, Joy; Ragan, Sandra L; Paice, Judith
Despite increased attention to communication skill training in palliative care, few interprofessional training programs are available and little is known about the impact of such training. This study evaluated a communication curriculum offered to interprofessional palliative care teams and examined the longitudinal impact of training. Interprofessional, hospital-based palliative care team members were competitively selected to participate in a two-day training using the COMFORT(TM SM) (Communication, Orientation and options, Mindful communication, Family, Openings, Relating, Team) Communication for Palliative Care Teams curriculum. Course evaluation and goal assessment were tracked at six and nine months postcourse. Interprofessional palliative care team members (n = 58) representing 29 teams attended the course and completed course goals. Participants included 28 nurses, 16 social workers, 8 physicians, 5 chaplains, and one psychologist. Precourse surveys assessed participants' perceptions of institution-wide communication performance across the continuum of care and resources supporting optimum communication. Postcourse evaluations and goal progress monitoring were used to assess training effectiveness. Participants reported moderate communication effectiveness in their institutions, with the weakest areas being during bereavement and survivorship care. Mean response to course evaluation across all participants was greater than 4 (scale of 1 = low to 5 = high). Participants taught an additional 962 providers and initiated institution-wide training for clinical staff, new hires, and volunteers. Team member training improved communication processes and increased attention to communication with family caregivers. Barriers to goal implementation included a lack of institutional support as evidenced in clinical caseloads and an absence of leadership and funding. The COMFORT(TM SM) communication curriculum is effective palliative care communication
Frey, Rosemary; Gott, Merryn; Raphael, Deborah; O'Callaghan, Anne; Robinson, Jackie; Boyd, Michal; Laking, George; Manson, Leigh; Snow, Barry
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.
THE BIRTH OF THE DUTCH LAW: Euthanasia has been recently legalized in the Netherlands (since April 1, 2002). In this Article, we present the various cultural and historical factors that contributed to the law, the guidelines for the procedure and the resulting controversy. THE INTERVENING FACTORS: Internationally, the attitude concerning end of life care are heterogenic and also directly depend on religious and cultural factors. In the Netherlands, the health system promotes the maintenance at home of the terminally ill. However, the financial aspects (private health insurance) interact with the management of these patients. The rules for euthanasia are very strict and a declaration must be registered. Dedicated commissions are organised to control that the rules are applied. The current debate concerns the pertinence of the regulations, the attitude towards handicapped people and children, and the need to develop palliative care. The latter have only recently been developed in the country. The priority is focusing on old peoples' homes. The Netherlands is slow in this regard, but a new draft law is soon to be presented to the Authorities, and will most probably enable the gaps to be bridged.
Tieman, Jennifer J; Abernethy, Amy P; Fazekas, Belinda S; Currow, David C
Background Palliative care is an evolving specialty with a growing evidence base. However, evidence is less accessible than it could be with a lower than average conversion of conference abstracts to articles in peer-reviewed journals and the need for more accessible tools to support evidence-based practice (EBP) in palliative care. The CareSearch project involved identifying, collecting and evaluating Australia's "grey" palliative care literature and identifying international published literature missing from the electronic indexing systems. The literature was then catalogued and made publicly available through the CareSearch website. Results To date over 2,500 items have been included in the CareSearch database and can be accessed and searched through a publicly available website. Nearly 2,000 items are conference abstracts and 178 are theses or government, organisational and planning documents. A further 410 items relate to articles from palliative journals that are not indexed on a major bibliographic database. The website also provides tools and facilities to support palliative care practice and research. Conclusion CareSearch is a new evidence resource for palliative practitioners, educators and researchers. The palliative community now has access to a more comprehensive literature base as well as a resource that supports the integration of knowledge into practice. This specialised data repository enables users to access information on the body of work that has shaped palliative care development and prevents the potential loss or duplication of research work. It also provides a template for other emerging disciplines to use in capturing their literature and evidence. PMID:16083513
Whittall, Dawn; Lee, Susan; O'Connor, Margaret
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
... Families Take the Quiz Step 3: Meet the Palliative Care Team The palliative care team will spend a lot of time ... are some suggestions: What can I expect from palliative care? Where will my care be provided (e. ...
Bottorff, Joan L; Kelly, Mary; Young, Jennifer
The purpose of this integrative review was to describe the research conducted by nurses since the mid-1990s on nursing practice in the context of palliative/end-of-life care, identify promising methodological developments as well as methodological challenges, and propose strategies to support the development of this field of nursing research. A search of databases resulted in 121 research reports published between 1995 and 2003. Studies were included if the lead author was a nurse and the focus was nursing practice or nurses' attitudes about providing palliative or end-of-life care. Relatively few studies included patients, there were limitations in the data-collection methods used, and there was a lack of studies evaluating palliative care nursing. An emphasis on the interdisciplinary nature of palliative care may be hindering nurses from examining the effectiveness of nursing interventions. Increased attention should be given to examining the efficiency and effectiveness of nursing interventions to ensure the best outcomes for patients and their families.
Jünger, S; Pestinger, M; Elsner, F; Krumm, N; Radbruch, L
Team work is considered a central component of palliative care. Within this comparatively young field of medicine, the emergence of new institutions (eg, palliative care units) highlights the challenge of establishing a completely new team. This study focuses on the factors, which enhance both the success and outcome criteria of good team work from the perception of team members in a palliative care unit. The palliative care team at the University Hospital of Aachen (n = 19) was interviewed 1 year after the unit's startup by the means of semistructured interviews. Interview texts were analysed using qualitative content analysis. Factors crucial to cooperation in the team members' views were close communication, team philosophy, good interpersonal relationships, high team commitment, autonomy and the ability to deal with death and dying. Moreover, close communication was by far the most frequently mentioned criteria for cooperation. Team performance, good coordination of workflow and mutual trust underpin the evaluation of efficient team work. Inefficient team work is associated with the absence of clear goals, tasks and role delegation, as well as a lack of team commitment. In a new team, close communication is particularly important for staff as they reorientate themselves to the dynamics of a new peer group. The results confirm the overwhelming importance of clarity, commitment and close, positive exchange among team members for successful team work.
van Gurp, Jelle; van Selm, Martine; van Leeuwen, Evert; Vissers, Kris; Hasselaar, Jeroen
Interprofessional consultation contributes to symptom control for home-based palliative care patients and improves advance care planning. Distance and travel time, however, complicate the integration of primary care and specialist palliative care. Expert online audiovisual teleconsultations could be a method for integrating palliative care services. This study aims to describe (1) whether and how teleconsultation supports the integration of primary care, specialist palliative care, and patient perspectives and services and (2) how patients and (in)formal caregivers experience collaboration in a teleconsultation approach. This work consists of a qualitative study that utilizes long-term direct observations and in-depth interviews. A total of 18 home-based palliative care patients (16 with cancer, 2 with chronic obstructive pulmonary disease; age range 24-85 years old), 12 hospital-based specialist palliative care team clinicians, and 17 primary care physicians. Analysis showed that the introduction of specialist palliative care team-patient teleconsultation led to collaboration between primary care physicians and specialist palliative care team clinicians in all 18 cases. In 17/18 cases, interprofessional contact was restricted to backstage work after teleconsultation. In one deviant case, both the patient and the professionals were simultaneously connected through teleconsultation. Two themes characterized integrated palliative care at home as a consequence of teleconsultation: (1) professionals defining responsibility and (2) building interprofessional rapport. Specialist palliative care team teleconsultation with home-based patients leads to collaboration between primary care physicians and hospital-based palliative care specialists. Due to cultural reasons, most collaboration was of a multidisciplinary character, strongly relying on organized backstage work. Interdisciplinary teleconsultations with real-time contact between patient and both professionals were
Wentlandt, Kirsten; Weiss, Andrea; O'Connor, Erin; Kaya, Ebru
Palliative care is an interprofessional approach that focuses on quality of life of patients 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 health care utilization. Most transplant patients suffer from 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 is 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 potential to improve symptom burden, quality of life, and health care utilization. Further studies are needed to elucidate specific benefits of palliative care for this population. In addition, there is tremendous need for education, specifically for clinicians, patients, and families, to improve understanding of palliative care and its benefits for patients with advanced disease. This article is protected by copyright. All rights reserved. This article is protected by copyright. All rights reserved.
Boersma, Isabel; Miyasaki, Janis; Kutner, Jean; Kluger, Benzi
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.
Roberto, Anna; Deandrea, Silvia; Greco, Maria Teresa; Corli, Oscar; Negri, Eva; Pizzuto, Massimo; Ruggeri, Fabrizio
Because of the increasing body of literature on neuropathic cancer pain (NCP), an accurate estimate of its prevalence requires recurring updates. To provide this estimate using information from a systematic review and a survey. Using MEDLINE, Embase, and a previous review, we searched for studies published up to 2014 reporting data on NCP prevalence in adult cancer populations. Pooled prevalence rates from observational prospective studies were computed. The association between NCP prevalence and possible predictors was investigated for oncology and palliative settings. Prevalence rates were extracted from a questionnaire answered by 137 physicians working in 50 Italian centers of palliative care. Estimates from studies conducted in palliative settings and from the experts were analyzed separately and eventually pooled with an informative Bayesian random-effect model. Twenty-nine observational studies were identified. The overall pooled prevalence was 31.2%, with high heterogeneity; similar figures were observed when oncology and palliative settings were individually considered. A slightly higher prevalence of NCP was detected for hospice/inpatients as compared to outpatients, in both settings. The mean NCP prevalence reported by the survey experts was 44.2%; the pooled Bayesian estimate for the palliative setting corresponded to 43.0% (95% CI: 40.0-46.0). The subgroup with the lowest heterogeneity and where the literature and experts' estimates were closest is hospice/inpatients, with a pooled Bayesian prevalence rate of 34.9% (95% CI: 29.9-41.0). The systematic review and the survey suggest that more than one in three patients with cancer pain also experiences NCP. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.
Webster, Ruth; Lacey, Judith; Quine, Susan
Palliative care is an emerging specialist discipline worldwide with the majority of services located in developed countries. Developing countries, however, have higher incidences of cancer and AIDS and most of these patients would benefit from palliative care. While there is prominent coverage of this issue in the palliative care literature, there is limited coverage in the specialist public health literature, which suggests that the challenges of palliative care may not yet have been generally recognized as a public health priority, particularly in developing countries. The aim of this article is to introduce the topic of "Palliative care in developing countries" into the specialist public health literature to raise awareness and stimulate debate on this issue among public health professionals and health policy makers, thereby potentially facilitating establishment of palliative care services in developing countries.
Khosla, Divya; Patel, Firuza D; Sharma, Suresh C
Despite its limited coverage, palliative care has been present in India for about 20 years. Obstacles in the growth of palliative care in India are too many and not only include factors like population density, poverty, geographical diversity, restrictive policies regarding opioid prescription, workforce development at base level, but also limited national palliative care policy and lack of institutional interest in palliative care. Nonetheless we have reasons to be proud in that we have overcome several hurdles and last two decades have seen palpable changes in the mindset of health care providers and policy makers with respect to need of palliative care in India. Systematic and continuous education for medical staff is mandatory, and a major break-through for achieving this purpose would be to increase the number of courses and faculties in palliative medicine at most universities. PMID:23439559
Dallara, Alexis; Meret, Anca; Saroyan, John
Objectives of this review were to examine definitions and background of palliative care, as well as address whether there is an increased need for palliative care education among neurologists. The review also explores what literature exists regarding palliative care within general neurology and child neurology. A literature review was conducted examining use of palliative care within child neurology. More than 100 articles and textbooks were retrieved and reviewed. Expert guidelines stress the importance of expertise in palliative care among neurologists. Subspecialties written about in child neurology include that of peripheral nervous system disorders, neurodegenerative diseases, and metabolic disorders. Adult and child neurology patients have a great need for improved palliative care services, as they frequently develop cumulative physical and cognitive disabilities over time and cope with decreasing quality of life before reaching the terminal stage of their illness.
Sarabia-Cobo, Carmen María; Alconero-Camarero, Ana Rosa; Lavín-Alconero, Lucía; Ibáñez-Rementería, Isabel
Major deficiencies exist in undergraduate nursing education for Palliative Care. Opportunities to care for dying patients are often unavailable to students in traditional clinical settings. Palliative care simulation is an innovative strategy that may help to prepare undergraduate nursing students to provide quality palliative/end of life care. It is valuable to explore the student nurses' beliefs, feelings and satisfaction regarding the impact that simulation clinic applied to palliative care has and how it influenced their overall experience of caring for a dying patient and the patient's family. This study aimed to evaluate a learning intervention in palliative care using a low-fidelity clinical simulation for undergraduate nursing students from a Spanish university, based on the analytics of their expectations and learning objectives. Sixty-eight students participated in this mixed descriptive design study, they participated in a palliative care simulation scenario and completed three questionnaires which assess the knowledge and expectations before the simulation and the subsequent satisfaction with the performance and learning received. The intervention in question met students' learning expectations, singling out social abilities as important tools in palliative care training, and the students were satisfied with the presented case studies. Our results suggest that low-fidelity clinical simulation intervention training in palliative care is an appropriate and low-cost tool for acquiring competitive skills. Learning in the simulation scenarios provides a mechanism for students to improve student communication skills. Copyright © 2016 Elsevier Ltd. All rights reserved.
Gardiner, Clare; Gott, Merryn; Ingleton, Christine
Background 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 Aim To explore factors that support partnership working between specialist and generalist palliative care providers. Design Systematic review. Method 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. Results 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. Conclusion 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. PMID:22546595
Lung cancer accounts for 12% of all cancers and has the highest annual rate of mortality in men and women. The overall aim is cure or prolongation of life without evidence of disease. Almost 60% of patients at the moment of diagnosis are not eligible for radical treatment. Therefore soothing and supportive treatment is the only treatment of choice. Patients with lung cancer who have symptoms of dyspnea, chronic cough, severe pain, exhaustion and cachexia syndrome, fear and depression and significantly reduced physical and intellectual activities are qualified for inpatient or home palliative care. Knowledge about various methods used in palliative treatment allows one to alleviate symptoms that occur in an advanced stage of disease with an expected short survival period. Methods of oncological treatment that are often used in patients with advanced lung cancer include radiotherapy and chemotherapy. Drawing attention to the earlier implementation of palliative care is an objective of research carried out during recent years. Advances in surgical and conservative treatment of these patients have contributed to better outcomes and longer survival time. PMID:24596508
Dumanovsky, Tamara; Augustin, Rachel; Rogers, Maggie; Lettang, Katrina; Meier, Diane E.
Abstract Background: Palliative care is expanding rapidly in the United States. Objective: To examine variation in access to hospital palliative care. Methods: Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. Results: Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. Conclusions: This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership. PMID:26417923
Mierendorf, Susanne M; Gidvani, Vinita
The Emergency Department (ED) is the place where people most frequently seek urgent care. For patients living with chronic disease or malignancy who may be in a crisis, this visit may be pivotal in determining the patients’ trajectory. There is a large movement in education of emergency medicine physicians, hospitalists, and intensivists from acute aggressive interventions to patient-goal assessment, recognizing last stages of life and prioritizing symptom management. Although the ED is not considered an ideal place to begin palliative care, hospital-based physicians may assist in eliciting the patient’s goals of care and discussing prognosis and disease trajectory. This may help shift to noncurative treatment. This article will summarize the following: identification of patients who may need palliation, discussing prognosis, eliciting goals of care and directives, symptom management in the ED, and making plans for further care. These efforts have been shown to improve outcomes and to decrease length of stay and cost. The focus of this article is relieving “patient” symptoms and family distress, honoring the patient’s goals of care, and assisting in transition to a noncurative approach and placement where this may be accomplished. PMID:24694318
Kelly, Len; Linkewich, Barb; Cromarty, Helen; St Pierre-Hansen, Natalie; Antone, Irwin; Gilles, Chris
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
Centeno, Carlos; Rodríguez-Núñez, Alfredo
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.
Bennett, Michael I; Ziegler, Lucy; Allsop, Matthew; Daniel, Sunitha; Hurlow, Adam
Objective For patients with advanced cancer, several randomised controlled trials have shown that access to palliative care at least 6 months before death can improve symptoms, reduce unplanned hospital admissions, minimise aggressive cancer treatments and enable patients to make choices about their end-of-life care, including exercising the choice to die at home. This study determines in a UK population the duration of palliative care before death and explores influencing factors. Design This retrospective cohort study analysed referrals to three specialist palliative care services; a hospital-based inpatient palliative care team, and two community-based services (hospices). For each patient referred to any of the above services we identified the date of first referral to that team and calculated the median interval between first referral and death. We also calculated how referral time varied by age, sex, diagnosis and type of palliative care service. Participants 4650 patients referred to specialist palliative care services in Leeds UK between April 2012 and March 2014. Results Median age of the sample was 75 years. 3903 (84.0%) patients had a diagnosis of cancer. Age, diagnosis and place of referral were significant predictors of duration of palliative care before death. Age was independently associated (J=2 672 078, z=−392046.14, r=0.01) with duration of palliative care regardless of diagnosis. Patients over 75 years have 29 fewer days of palliative care than patients under 50. Patients with non-cancer diagnoses have 13 fewer days of palliative care than patients with cancer. Additionally, patients referred to hospital palliative care receive 24.5 fewer days palliative care than those referred to community palliative care services. Conclusions The current timing of referral to palliative care may limit the benefits to patients in terms of improvements in end-of-life care, particularly for older patients and patients with conditions other than cancer
de Paula Paz, Cássia Regina; Reis Pessalacia, Juliana Dias; Campos Pavone Zoboli, Elma Lourdes; Ludugério de Souza, Hieda; Ferreira Granja, Gabriela; Cabral Schveitzer, Mariana
Assess the need for incorporation of palliative care in primary health care (PHC) through the characterization of users eligible for this type of care, enrolled in a program for devices dispensing. Descriptive study of case series conducted in 14 health units in São Paulo (Brazil) in 2012. It was included medical records of those enrolled in a program for users with urinary and fecal incontinence, and it was applied Karnofsky Performance Scale Index (KPS) to identify the indication of palliative care. 141 of the 160 selected medical records had KPS information. Most cases (98.3%, 138/141) had performance below 70% and, therefore, patients were eligible for palliative care. The most frequent pathologies was related to chronic degenerative diseases (46.3%), followed by disorders related to quality of care during pregnancy and childbirth (24.38%). It is necessary to include palliative care in PHC in order to provide comprehensive, shared and humanized care to patients who need this.
Pokropska, Wieslawa; Łuczak, Jacek; Kaptacz, Anna; Stachowiak, Andrzej; Hurich, Krystyna; Koszela, Monika
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
On World Hospice and Palliative Care Day-8 October 2011-the Worldwide Palliative Care Alliance (WPCA) launched a global update highlighting the progress that has been made in hospice and palliative care over the past 5 years (Lynch et al, 2011; WPCA 2011). Encouragingly, the study shows that there has been a marked increase in the number of countries providing one or more hospice and palliative care services-from 49% of countries in 2006 to 58% in 2011. Here we explore some of the key factors behind this progress, focusing particularly on advocacy and policy.
Berry, Mary Judith; Saito-Benz, Maria; Klein, Tisha; Bowkett, Brendon; Richardson, Vaughan F
Complete ectopia cordis in the newborn represents a significant management challenge. There are minimal data available to inform optimal clinical care for those infants with coexisting complex congenital heart disease who are therefore not candidates for surgical intervention. The exteriorisation of the heart and absence of the pericardial sac requires meticulous wound care to prevent desiccation of the myocardium and to minimise infection risk. Additionally, the technique selected must address the risk of occlusion of the cardiac vascular pedicle and abrasion between the mobile myocardium and dressing surface. We report a novel approach to wound management and integrated palliative care that enabled community-based care. Our patient, a full-term male infant with complete ectopia cordis was born in good condition by assisted vaginal delivery. He was discharged from hospital on day 8 and was cared for in the community until his demise from cardiac failure on day 15.
Zulman, Donna M.
Abstract With global aging and scientific advances extending survival, the number of adults experiencing multiple chronic conditions has grown substantially and is projected to increase by another third between 2000 and 2030. Among the many challenges posed by multimorbidity, some of the most pressing include how to characterize and measure comorbid conditions, understand symptoms and illness burden, and provide person-centered care in the context of competing health care priorities and increasing complexity. In this white paper emanating from a National Institute on Aging supported conference to discuss research gaps at the geriatrics–palliative care interface, the authors review common definitions of multimorbidity; describe the association between multimorbidity and quality of life, functional status, quality of care, and health care utilization; note content and methodological gaps in multimorbidity evidence; and make recommendations regarding research priorities in this area of expanding public health impact. PMID:23777331
Cooper, Rhonda S
The role of the professional chaplain on the palliative care team in the health care setting formalizes the concern for the emotional, spiritual and social well-being of the care recipients and their caregivers. The chaplain also has a peculiar role on the team, in that her most fundamental task is her intentional listening-and-hearing of the other person's story. One palliative chaplain introduces herself as a Story Catcher to care recipients, in an effort both to overcome the resistance some may have to her presence on the team and communicate her essential role and intent in providing spiritual care. This self-appointed sobriquet resonates with the author's embrace of the theory and practice of the late theologian, educator and civil rights activist Nelle Morton, who coined the phrase "hearing into speech" to describe the process by which another person, through being truly heard and entering into a relationship with the hearer, claims her/his own truth, hope and identity in the face of adversity. The chaplain as Story Catcher functions as the agent of healing and hope for those who choose to tell their stories and are heard, as they resist their illness and death rather than submit to its indignity. Copyright © 2017. Published by Elsevier Inc.
Brand, Alison H; Harrison, Amanda; Kumar, Koshila
Given our ageing population and the increase in chronic disease, palliative care will become an increasingly important part of doctors' workloads, with implications for palliative care education. This study used a mixed methods strategy to evaluate second-year medical students' learning outcomes and experiences within a palliative care education program. Analysis of pre- and post-test scores showed a significant improvement in students' attitudinal scores, but no change in knowledge as measured by multiple-choice questions. Analysis of qualitative data revealed that students' learning experience was marked by a lack of clear learning objectives and experiential learning opportunities. Students also reported divergent reactions to death and dying and noted that palliative care was different from other areas of clinical medicine. This study revealed that palliative care teaching results in improved attitudes toward palliative care, reflecting the holistic and patient-focused nature of the palliative care curriculum.
van Gurp, Jelle; van Selm, Martine; Vissers, Kris; van Leeuwen, Evert; Hasselaar, Jeroen
Objective The problems and needs of advanced cancer patients and proxies normally increase as the disease progresses. Home-based advanced cancer patients and their proxies benefit from collaborations between primary care physicians and hospital-based palliative care specialists when confronted with complex problems in the last phase of life. Telemedicine might facilitate direct, patient-centered communication between patients and proxies, primary care physicians, and specialist palliative care teams (SPCTs). This study focuses on the impact of teleconsultation technologies on the relationships between home-based palliative care patients and hospital-based palliative care specialists. Methods This work consists of a qualitative study among patients, family members, and caregivers that utilizes long-term direct observations, semi-structured interviews, and open interviews following the observations. Results The analysis of the empirical data resulted in three key concepts that describe the impact of teleconsultation on the patient-professional relationship in palliative homecare: transcending the institutional walls of home and hospital; transparency of teleconsultation technology; and technologized, intimate patient-professional relationships. Teleconsultation offers (1) condensed encounters between home-based palliative care patients and distant professionals, (2) a unique insight into the patients’ daily lives for palliative care specialists, and (3) long-term interaction that results in trustful relationships and experiences of intimacy and relief. Conclusions Teleconsultation fits the practice of home-based palliative care. Teleconsultation can, if well applied, facilitate computer-mediated but empathic patient-palliative care specialist relationships, which enable professional care attuned to the patient’s context as well as patient involvement. This article proposes a teleconsultation implementation guide for optimal use of teleconsultation in daily
Michelson, Kelly Nicole; Steinhorn, David M.
Optimizing the quality of medical care at the end of life has achieved national status as an important health care goal. Palliative care, a comprehensive approach to treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses, requires the coordinated efforts of a multidisciplinary group of caregivers. Understanding the basic principles of palliative care can aid emergency department staff in identifying patients who could benefit from palliative care services and in managing the challenging situations that arise when such patients present to the hospital for care. In this article we present the overall philosophy of pediatric palliative care, describe key elements of quality palliative care, and identify additional referral sources readers can access for more information. PMID:18438449
Gielen, Joris; van den Branden, Stef; van Iersel, Trudie; Broeckaert, Bert
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.
Bekelman, David B; Rabin, Borsika A; Nowels, Carolyn T; Sahay, Anju; Heidenreich, Paul A; Fischer, Stacy M; Main, Deborah S
The Institute of Medicine recommends people with serious advanced illness have access to skilled palliative care. However, the predominant delivery model of nonhospice palliative care is inpatient, consultative care focused on the end of life, with a small specialist palliative care workforce. The study objective was to understand organizational factors that could influence the adoption and scale-up of outpatient palliative care in chronic advanced illness, using the example of heart failure. This was a cross-sectional qualitative study. Participants were 17 health care providers and local, regional, and national health system leaders from the Veterans Health Administration (VHA) who were considering whether and how to adopt and sustain outpatient palliative care. Individual interviews using semistructured questions assessed domains of the Consolidated Framework for Implementation Science. Most providers and leaders perceived outpatient palliative care as high priority in the VHA given its patient-centeredness and potential to decrease health care use and costs associated with conditions like heart failure. They also supported a collaborative care team model of outpatient palliative care delivery where a palliative care specialist collaborates with medical nurses and social workers. They reported lack of performance measures/incentives for patient-centered care processes and outcomes as a potential barrier to implementation. Features of outpatient palliative care viewed as important for successful adoption and scale-up included coordination and communication with other providers, ease of integration into existing programs, and evidence of improving quality of care while not substantially increasing overall health care costs. Incentives such as performance measures and collaboration with local VHA providers and leaders could improve adoption and scale-up of outpatient palliative care.
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
Evidence and information is an integral part of the processes enabling clinical and service delivery within health. It is used by health professionals in clinical practice and in developing their professional knowledge, by policy makers in decision making, and is sought by health consumers to help them manage their health needs and assess their options. Increasingly, this evidence and information is being disseminated and sought through online channels. The internet is fundamentally changing how health information is being distributed and accessed. Clinicians, patients, community members, and decision makers have an unprecedented capacity to find online information about palliative care and end-of-life care. However, it is clear that not all individuals have the skills to be able to find and assess the quality of the resources they need. There are also many issues in creating online resources that are current, relevant and authoritative for use by health professionals and by health consumers. This paper explores the processes and structures used in creating a major national palliative care knowledge resource, the CareSearch website, to meet the needs of health professionals and of patients and their families and carers. PMID:27983592
Vincent, I; D'Hérouville, D; Moulin, P; Bugler, C; Fraval, J; Mallet, D; Salamagne, M H; Vildé, J L; Jodelet, D; Leport, C
This prospective multidisciplinary survey started in October 1994. The survey assessed the modalities of care of hospitalized patients with advanced AIDS in an Infectious and Tropical Diseases Unit with regards to the practices of palliative care in a Palliative Care Unit. Seventy-eight (78) AIDS patients with CD4 < or = 30/mm3 who had 102 consecutive hospitalizations were recruited. Types (symptomatic or curative) and number of drugs administered to the patients, as well as biological and radiological investigations performed were recorded. Symptoms were concomitantly assessed on a weekly basis by self-evaluation of the patients themselves and by physicians. The results showed that the practices of care were different in the two units according to the specific goals and norms of each unit. A higher density of care was delivered at the Infectious and Tropical Diseases Unit. Symptoms assessed by both patients and physicians were underestimated by physicians in frequency and in intensity. In conclusion, an integrated approach including objective and subjective criteria should enable a better adjustment of the palliative and curative therapeutic strategies in advanced AIDS. These would concomitantly take into account the wishes of the patient and the goals regarding care in the unit where the patient is hospitalized.
Santos Salas, Anna; Cameron, Brenda L
Understanding how a nurse acts in a particular situation reveals how nurses enact their ethics in day-to-day nursing. Our ethical frameworks assist us when we experience serious ethical dilemmas. Yet how a nurse responds in situations of daily practice is contingent upon all the presenting cues that build the current moment. In this article, we look at how a home care nurse responds to the ethical opening that arises when the nurse enters a person's home. We discuss how the home presents the nurse with knowledge that informs the provision of ethical nursing care. The analysis is based on findings from an interpretive research study in palliative home care in Canada. Through interpretive analysis of a nursing situation we delineate how the nurse engages with the whole and acts inside the moment. The analysis shows how home care nurses are ethically determined to engage with whatever is going on in a patient's home.
Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas
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
Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas
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.
Claxton-Oldfield, Stephen; Banzen, Yana
The goal of this study was to examine the personality characteristics of hospice palliative care volunteers by measuring the so-called big five personality traits and 4 separate aspects of empathy. A total of 99 hospice palliative care volunteers completed the NEO Five-Factor Inventory (NEO-FFI) of Costa Jr and McCrae and the Interpersonal Reactivity Index (IRI) of Davis. The vast majority (84%) of the volunteers were females. Compared to the norms for adult females on the NEO-FFI, female hospice palliative care volunteers scored significantly higher on the traits of agreeableness, extraversion, and openness and significantly lower on the trait of neuroticism. On the empathy measure, female hospice palliative care volunteers scored significantly higher on the empathic concern and perspective taking subscales compared to the female norms, and significantly lower on the personal distress and fantasy subscales. The results of this study may have implications for the recruitment and retention of hospice palliative care volunteers.
Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care.
Mosenthal, Anne C; Weissman, David E; Curtis, J Randall; Hays, Ross M; Lustbader, Dana R; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret; Nelson, Judith E
Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. We searched the MEDLINE database from inception to May 2011 for all English language articles using the term "surgical palliative care" or the terms "surgical critical care," "surgical ICU," "surgeon," "trauma" or "transplant," and "palliative care" or "end-of- life care" and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. "Consultative," "integrative," and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and "culture" in the unit and institution. Approaches that emphasize delivery of
The value of palliative care in pediatrics has received significant attention over the past 10 years. The American Academy of Pediatrics and the Institute of Medicine published recommendations involving children who have a life-limiting diagnosis in a palliative care program early in their disease process. Palliative care is intended to assure an emphasis on quality of life in addition to the current medical treatment, which may be focused on cure, symptom management, and/or end-of-life care. This article describes one hospital's experience in planning, implementing, and managing a pediatric palliative care program. Implementing a hospital-based palliative care program in a children's hospital can be accomplished through careful planning and analysis of need. Writing an official business plan formalized the request for organizational support for this program, including the mission and vision, plans for how services would be provided, expected financial implications, and initial plans for evaluation of success.
Ratcliff, Cathy; Thyle, Ann; Duomai, Savita; Manak, Manju
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
O'Connor, Moira; Pugh, Judith; Jiwa, Moyez; Hughes, Jeff; Fisher, Colleen
Palliative care emphasizes an interdisciplinary approach to care to improve quality of life and relieve symptoms. Palliative care is provided in many ways; in hospices, hospital units, and the community. However, the greatest proportion of palliative care is in the community. In hospice and palliative care units in hospitals, clinical pharmacists are part of the interdisciplinary team and work closely with other health care professionals. Their expertise in the therapeutic use of medications is highly regarded, particularly as many palliative care patients have complex medication regimens, involving off-label or off-license prescribing that increases their risk for drug-related problems. However, this active involvement in the palliative care team is not reflected in the community setting, despite the community pharmacist being one of the most accessible professionals in the community, and visiting a community pharmacist is convenient for most people, even those who have limited access to private or public transport. This may be due to a general lack of understanding of skills and knowledge that particular health professionals bring to the interdisciplinary team, a lack of rigorous research supporting the necessity for the community pharmacist's involvement in the team, or it could be due to professional tensions. If these barriers can be overcome, community pharmacists are well positioned to become active members of the community palliative care interdisciplinary team and respond to the palliative care needs of patients with whom they often have a primary relationship.
Smith, C B; Nelson, J E; Berman, A R; Powell, C A; Fleischman, J; Salazar-Schicchi, J; Wisnivesky, J P
Integration of palliative care with standard oncologic care improves quality of life and survival of lung cancer patients. We surveyed physicians to identify factors influencing their decisions for referral to palliative care. We provided a self-administered questionnaire to physicians caring for lung cancer patients at five medical centers. The questionnaire asked about practices and views with respect to palliative care referral. We used multiple regression analysis to identify predictors of low referral rates (<25%). Of 155 physicians who returned survey responses, 75 (48%) reported referring <25% of patients for palliative care consultation. Multivariate analysis, controlling for provider characteristics, found that low referral rates were associated with physicians' concerns that palliative care referral would alarm patients and families [odds ratio (OR) 0.45, 95% confidence interval (CI) 0.21-0.98], while the belief that palliative care specialists have more time to discuss complex issues (OR 3.07, 95% CI 1.56-6.02) was associated with higher rates of referral. Although palliative care consultation is increasingly available and recommended throughout the trajectory of lung cancer, our data indicate it is underutilized. Understanding factors influencing decisions to refer can be used to improve integration of palliative care as part of lung cancer management.
0802 TITLE: Racial Disparities in Palliative Care for Prostate Cancer PRINCIPAL INVESTIGATOR: Alfred I. Neugut, MD, PhD...Disparities in Palliative Care for Prostate Cancer 5b. GRANT NUMBER W81XWH-10-1-0802 5c. PROGRAM ELEMENT NUMBER 6. AUTHOR(S...increasingly available. There has been very little research on the use of palliative treatments. Our team has developed the tools/methods for
Carpenter, Joan G
Although palliative care consultation teams are common in U.S. hospitals, follow up and outcomes of consultations for frail older adults discharged to nursing facilities are unclear. To summarize and critique research on the care of patients discharged to nursing facilities following a hospital-based palliative care consult, a systematic search of PubMed, CINAHL, Ageline, and PsycINFO was conducted in February 2016. Data from the articles (N = 12) were abstracted and analyzed. The results of 12 articles reflecting research conducted in five countries are presented in narrative form. Two studies focused on nurse perceptions only, three described patient/family/caregiver experiences and needs, and seven described patient-focused outcomes. Collectively, these articles demonstrate that disruption in palliative care service on hospital discharge and nursing facility admission may result in high symptom burden, poor communication, and inadequate coordination of care. High mortality was also noted. [Res Gerontol Nurs. 2017; 10(1):25-34.].
Knapp, Caprice; Madden, Vanessa; Wang, Hua; Curtis, Charlotte; Sloyer, Phyllis; Shenkman, Elizabeth
National experts have recommended that children with life-limiting illnesses receive integrated palliative and medical care. These programs offer a variety of services, including music therapy. Using survey data from parents whose were enrolled in Florida's Partners in Care: Together for Kids (PIC:TFK) program, this study investigates parents' experiences with music therapy. About 44% of children with life-limiting illnesses and 17% of their siblings used music therapy. For children who used music therapy, multivariate results suggest that their parents were 23 times as likely to report satisfaction with the overall PIC:TFK program (P < .05) versus parents whose children did not use music therapy. Pediatric palliative care programs should include music therapy, although recruiting licensed music therapists may be challenging.
Wood, Emily B.; Meekin, Sharon Abele; Fins, Joseph J.; Fleischman, Alan R.
Evaluated a project to catalyze New York State medical schools to develop and implement strategic plans for curricular change to enhance palliative care education. Found that the project's process of self-assessment and curriculum mapping with the Palliative Education Assessment Tool, along with strategic planning for change, appears to have…
Cohen, Lynne; O'Connor, Moira; Blackmore, Amanda Marie
Nursing homes are one of the care settings in Western Australia where older people may spend their final years. Residents should be able to receive palliative care where appropriate, but this type of care is not always available at some nursing homes in the state. This study investigated nurses' attitudes to palliative care in nursing homes by examining their cognitive, affective and behavioural information. A sample of 228 nurses working in nursing homes completed a questionnaire, using a free response methodology. Results showed that participants had either a positive or negative attitude to palliative care. Cognitive and affective information significantly and independently predicted the attitudes of nurse, whereas knowledge of palliative care did not contribute significantly to these attitudes. Nurses currently working in palliative care were more positively disposed towards such care, but this disappeared when they ceased working in the area. There is an emphasis on education in the literature which does not take into account the beliefs and emotions of the nurse. Therefore, there is a need to consider these in undergraduate and postgraduate training for nurses. Current experience is also important in palliative care education. The results obtained from nurses in this study should be incorporated into policy for introducing palliative care into nursing homes and used to provide support and assistance to nurses working in this field.
Lilley, Elizabeth J; Cooper, Zara; Schwarze, Margaret L; Mosenthal, Anne C
Given the acute and often life-limiting nature of surgical illness, as well as the potential for treatment to induce further suffering, surgical patients have considerable palliative care needs. Yet, these patients are less likely to receive palliative care than their medical counterparts and palliative care consultations often occur when death is imminent, reflecting poor quality end-of-life care. Surgical patients would likely benefit from early palliative care delivered alongside surgical treatment to promote goal-concordant decision making and to improve patients' physical, emotional, social, and spiritual well-being and quality of life. To date, evidence to support the role of palliative care in surgical practice is sparse and palliative care research in surgery is encumbered by methodological challenges and entrenched cultural norms that impede appropriate provision of palliative care. The objective of this article was to describe the existing science of palliative care in surgery within three priority areas and expose specific gaps within the field. We propose a research agenda to address these gaps and provide a road map for future investigation.
Grant, Marcia; Elk, Ronit; Ferrell, Betty; Morrison, R. Sean; von Gunten, Charles F.
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
Downing, J; Marston, J; Muckaden, Ma; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P
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.
Limardi, Stefano; Stievano, Alessandro; Rocco, Gennaro; Vellone, Ercole; Alvaro, Rosaria
To describe a research protocol designed to formulate a conceptual framework of informal caregiver resilience in palliative care. Resilience is the ability to adapt or to improve one's own conditions following experiences of adversity. The end-of-life care provided by informal caregivers is a form of adversity because it entails objective difficulties, emotional involvement and deep levels of introspection that have been stimulated by the death event. Resilience has not yet been addressed in association with end-of-life care. This is a multicentre cross-sectional study. We will administer a questionnaire to a sample of informal end-of-life caregivers to collect data about the main psychological, behavioural and healthcare factors that impact resilience. Data analysis will include descriptive and correlational statistical techniques, multiple linear regressions and structural equation modelling. Data will be collected in multiple palliative care centres and statistical analysis will be carried out using software: SPSS version 19.0 and MPlus version 7.3. The study is supported by a grant from the Centre of Excellence for Nursing Scholarship in Italy (Research Grant number 2.13.10) that was awarded in March 2013. The study seeks to identify the predictive, mediating and moderating roles of select variables: caregivers' self-efficacy, burdens of caregiving, depression and resilience. The results of this analysis will impact the theoretical study of resilience in palliative care and will have practical implications for interventions aimed at supporting caregivers through healthcare teams. © 2015 John Wiley & Sons Ltd.
Ho, Lawrence A.; Engelberg, Ruth A.; Curtis, J. Randall; Nelson, Judith; Luce, John; Ray, Daniel E.; Levy, Mitchell M.
Objective There are numerous challenges to successfully integrating palliative care in the ICU. Our primary goal was to describe and compare the quality of palliative care delivered in an ICU as rated by physicians and nurses working in that ICU. Design Multi-site study using self-report questionnaires. Setting Thirteen hospitals throughout the United States. Participants Convenience sample of 188 physicians working in critical care (attending physicians, critical care fellows, resident physicians) and 289 critical care nurses. Measurements Clinicians provided overall ratings of the care delivered by either nurses or physicians in their ICU for each of seven domains of ICU palliative care using a 0–10 scale (0 indicating the worst possible and 10 indicating the best possible care). Analyses included descriptive statistics to characterize measurement characteristics of the 10 items, paired Wilcoxon tests comparing item ratings for the domain of symptom management with all other item ratings, and regression analyses assessing differences in ratings within and between clinical disciplines. We used p<0.001 to denote statistical significance to address multiple comparisons. Main Results The ten items demonstrated good content validity with few missing responses, ceiling or floor effects. Items receiving the lowest ratings assessed spiritual support for families, emotional support for ICU clinicians, and palliative-care education for ICU clinicians. All but two items were rated significantly lower than the item assessing symptom management (p<0.001). Nurses rated nursing care significantly higher (p<0.001) than physicians rated physician care in five domains. In addition, while nurses and physicians gave comparable ratings to palliative care delivered by nurses, nurses’ and physicians’ ratings of physician care were significantly different, with nurse ratings of this care lower than physician ratings on all but one domain. Conclusion Our study supports the content
The purpose of this qualitative study, using a modified grounded theory approach, was to investigate how palliative care nurses care for people from cultural backgrounds other than their own. Ten palliative care nurses were interviewed. The semi-structured interviews were tape-recorded and transcribed verbatim. Analysis commenced as soon as data began to emerge. The findings show that palliative nursing across cultural boundaries is paradoxical. In endeavouring to treat everyone equally, nurses treated everyone as individuals. They made intense efforts to transcend both cultural and language barriers. The nurses gave of themselves when caring for the patients, but their endeavours were impeded by limited resources and a lack of education. The theory of cross-cultural endeavour in palliative nursing was developed to explain how palliative care nurses care for patients from cultures other than their own.
Kavalieratos, Dio; Mitchell, Emma M.; Carey, Timothy S.; Dev, Sandesh; Biddle, Andrea K.; Reeve, Bryce B.; Abernethy, Amy P.; Weinberger, Morris
Background Although similar to cancer patients regarding symptom burden and prognosis, patients with heart failure (HF) tend to receive palliative care far less frequently. We sought to explore factors perceived by cardiology, primary care, and palliative care providers to impede palliative care referral for HF patients. Methods and Results We conducted semistructured interviews regarding (1) perceived needs of patients with advanced HF; (2) knowledge, attitudes, and experiences with specialist palliative care; (3) perceived indications for and optimal timing of palliative care referral in HF; and (4) perceived barriers to palliative care referral. Two investigators analyzed data using template analysis, a qualitative technique. We interviewed 18 physician, nurse practitioner, and physician assistant providers from 3 specialties: cardiology, primary care, and palliative care. Providers had limited knowledge regarding what palliative care is, and how it can complement traditional HF therapy to decrease HF‐related suffering. Interviews identified several potential barriers: the unpredictable course of HF; lack of clear referral triggers across the HF trajectory; and ambiguity regarding what differentiates standard HF therapy from palliative care. Nevertheless, providers expressed interest for integrating palliative care into traditional HF care, but were unsure of how to initiate collaboration. Conclusions Palliative care referral for HF patients may be suboptimal due to limited provider knowledge and misperceptions of palliative care as a service reserved for those near death. These factors represent potentially modifiable targets for provider education, which may help to improve palliative care referral for HF patients with unresolved disease‐related burden. PMID:24385453
Sandman, Lars; Molander, Ulla; Benkel, Inger
Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.
Daya, A Praveena; Sarkar, Sonali; Kar, Sitanshu Sekhar
Context: The coverage of palliative care services is inadequate in India. Data on number of people needing palliative care and disease conditions needing palliative care needs to be estimated prior to planning of service in any area. Aims: To estimate the prevalence of need of palliative care in an urban area of Puducherry. Settings and Design: Exploratory cross-sectional study conducted in two areas, Senthamarainagar and Thiruvalluvarnagar having about 500 households each in Muthialpet area in urban Puducherry. Materials and Methods: All residents were interviewed using a structured questionnaire containing sociodemographic details, information regarding chronic illness and a screening tool to identify people in need of palliative care. Statistical Analysis: Variables such as sociodemographic characteristics were expressed in percentages. The main outcome variable, the number of people in need of palliative care was expressed in the prevalence percentages. Results: A total of 3554 individuals were surveyed in 1004 households. A period prevalence of need of palliative care in this community was 6.1/1000 population. The prevalence among those aged ≥15 years was 8/1000 population. The mean age of people requiring palliative care was 62 years. The most common disease condition in need of palliative care was old age-related weakness (41%). Most of them were women (17/22) and from lower socioeconomic class (6/22). Conclusions: Around 6/1000 population was identified to be in need of palliative care. The prevalence was highest among the elderly women, low socioeconomic class, widowed, those with less education, and those suffering from age-related weakness. PMID:28216868
Lane, Heather; Philip, Jennifer
To explore the views and experiences of staff from RACFs and community palliative care services (CPCSs) on providing palliative and end-of-life care in RACFs. Qualitative exploratory interviews and focus groups were conducted with staff working in two RACFs and two CPCSs, and, following data saturation, a thematic analysis undertaken. 15 RACF and 15 CPCS staff participated. The overarching theme was of managing expectations in the provision of care. This included low expectations of the care available in RACFs, tensions in addressing complex decision-making and concurrent administrative expectations, and differences between views of RACF and CPCS staff regarding their respective roles. Improved understanding of the needs of RACF staff will improve the care of residents and, in turn, reduce hospitalisations. © 2013 ACOTA.
Lloyd-Williams, Mari; Field, David
Responses from 46 of 108 nurse educators in the United Kingdom indicated that diploma students received a mean of 7.8 hours and degree students 12.2 hours of palliative care training. Although 82% believed it should be a core component, 67% had difficulty finding qualified teachers. Palliative care knowledge was not formally assessed in most…
This essay is a reflection on the multidisciplinary team in palliative care, from the perspective of a final year MBBS student from the UK spending one month with an Indian pain and palliative care team at Institute Rotary Cancer Hospital (IRCH), AIIMS, New Delhi.
Knapp, Caprice A; Madden, Vanessa L; Curtis, Charlotte; Sloyer, Phyllis J; Shenkman, Elizabeth A
National experts have recognized a need for increased research in pediatric palliative care. However, when conducting research it is important to use rigorous methods, report significant and non-significant findings, and include information on responders and non-responders. Most studies do not present information on non-responders, yet this is critical as the results many not be generalizable if there are inherent differences between the two groups. Using survey data from parents whose children with life-limiting illnesses were enrolled in Florida's publicly funded pediatric palliative care program called Partners in Care: Together for Kids; this study investigates whether non-response bias exists, and if so, what characteristics are associated with non-response. Bivariate and multivariate analyses were conducted to determine whether individual characteristics differed between responders and non-responders. Throughout our analyses, we conducted the analyses using different ways in which 'non-response' can be defined. Our results suggest that regardless of how non-response is defined, Black, non-Hispanic parents were less likely to participate than White non-Hispanic parents. However, we also found that of the Black, non-Hispanic parents who did not participate, their primary reason for doing so was that they had non-working or disconnected phone numbers. Only 3% of the Black, non-Hispanic parents who did not participate flatly refused. Information from this study can be used to design interventions aimed at increasing minority participation in pediatric palliative care research.
Daly, Donnelle; Matzel, Stephen Chavez
A transdisciplinary team is an essential component of palliative and end-of-life care. This article will demonstrate how to develop a transdisciplinary approach to palliative care, incorporating nursing, social work, spiritual care, and pharmacy in an acute care setting. Objectives included: identifying transdisciplinary roles contributing to care in the acute care setting; defining the palliative care model and mission; identifying patient/family and institutional needs; and developing palliative care tools. Methods included a needs assessment and the development of assessment tools, an education program, community resources, and a patient satisfaction survey. After 1 year of implementation, the transdisciplinary palliative care team consisted of seven palliative care physicians, two social workers, two chaplains, a pharmacist, and End-of-Life Nursing Consortium (ELNEC) trained nurses. Palomar Health now has a palliative care service with a consistent process for transdisciplinary communication and intervention for adult critical care patients with advanced, chronic illness.
Kampo medicines are currently manufactured under strict quality controls. The Ministry of Health, Labour and Welfare of Japan has approved 148 Kampo formulas. There is increasing evidence for the efficacy of Kampo medicines, and some are used clinically for palliative care in Japan. The specific aim of this review is to evaluate the clinical use of Kampo medicines in palliative care in the treatment of cancer. The conclusions are as follows: Juzentaihoto inhibits the progression of liver tumors in a dose-dependent manner and contributes to long-term survival. Hochuekkito has clinical effects on cachexia for genitourinary cancer and improves the QOL and immunological status of weak patients, such as postoperative patients. Daikenchuto increases intestinal motility and decreases the postoperative symptoms of patients with total gastrectomy with jejunal pouch interposition, suppresses postoperative inflammation following surgery for colorectal cancer, and controls radiation-induced enteritis. Rikkunshito contributes to the amelioration of anorectic conditions in cancer cachexia-anorexia syndrome. Goshajinkigan and Shakuyakukanzoto reduce the neurotoxicity of patients with colorectal cancer who undergo oxaliplatin and FOLFOX (5-fluorouracil/folinic acid plus oxaliplatin) therapy. Hangeshashinto has the effect of preventing and alleviating diarrhea induced by CPT-11(irinotecan) and combination therapy with S-1/CPT-11. O’rengedokuto significantly improves mucositis caused by anticancer agents. PMID:24447861
Hubble, Rosemary A; Ward-Smith, Peggy; Christenson, Kathy; Hutto, C J; Korphage, Rebecca M; Hubble, Christopher L
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.
Kumar, Senthil P
Pediatric palliative care clinical practice depends upon an evidence-based decision-making process which in turn is based upon current research evidence. This study aimed to perform a quantitative analysis of research publications in palliative care journals for reporting characteristics of articles on pediatric palliative care. This was a systematic review of palliative care journals. Twelve palliative care journals were searched for articles with "paediatric" or "children" in titles of the articles published from 2006 to 2010. The reporting rates of all journals were compared. The selected articles were categorized into practice, education, research, and administration, and subsequently grouped into original and review articles. The original articles were subgrouped into qualitative and quantitative studies, and the review articles were grouped into narrative and systematic reviews. Each subgroup of original articles' category was further classified according to study designs. Descriptive analysis using frequencies and percentiles was done using SPSS for Windows, version 11.5. The overall reporting rate among all journals was 2.66% (97/3634), and Journal of Hospice and Palliative Nursing (JHPN) had the highest reporting rate of 12.5% (1/8), followed by Journal of Social Work in End-of-Life and Palliative Care (JSWELPC) with a rate of 7.5% (5/66), and Journal of Palliative Care (JPC) with a rate of 5.33% (11/206). The overall reporting rate for pediatric palliative care articles in palliative care journals was very low and there were no randomized clinical trials and systematic reviews found. The study findings indicate a lack of adequate evidence base for pediatric palliative care.
Bergman, Jonathan; Laviana, Aaron A
Palliative care involves aggressively addressing and treating psychosocial, spiritual, religious, and family concerns, as well as considering the overall psychosocial structures supporting a patient. The concept of integrated palliative care removes the either/or decision a patient needs to make: they need not decide if they want either aggressive chemotherapy from their oncologist or symptom-guided palliative care but rather they can be comanaged by several clinicians, including a palliative care clinician, to maximize the benefit to them. One common misconception about palliative care, and supportive care in general, is that it amounts to “doing nothing” or “giving up” on aggressive treatments for patients. Rather, palliative care involves very aggressive care, targeted at patient symptoms, quality-of-life, psychosocial needs, family needs, and others. Integrating palliative care into the care plan for individuals with advanced diseases does not necessarily imply that a patient must forego other treatment options, including those aimed at a cure, prolonging of life, or palliation. Implementing interventions to understand patient preferences and to ensure those preferences are addressed, including preferences related to palliative and supportive care, is vital in improving the patient-centeredness and value of surgical care. Given our aging population and the disproportionate cost of end-of-life care, this holds great hope in bending the cost curve of health care spending, ensuring patient-centeredness, and improving quality and value of care. Level 1 evidence supports this model, and it has been achieved in several settings; the next necessary step is to disseminate such models more broadly. PMID:27226721
Stienstra, Deborah; Chochinov, Harvey Max
Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.
Lovell, Allison; Yates, Patsy
Advance Care Planning is an iterative process of discussion, decision-making and documentation about end-of-life care. Advance Care Planning is highly relevant in palliative care due to intersecting clinical needs. To enhance the implementation of Advance Care Planning, the contextual factors influencing its uptake need to be better understood. To identify the contextual factors influencing the uptake of Advance Care Planning in palliative care as published between January 2008 and December 2012. Databases were systematically searched for studies about Advance Care Planning in palliative care published between January 2008 and December 2012. This yielded 27 eligible studies, which were appraised using National Institute of Health and Care Excellence Quality Appraisal Checklists. Iterative thematic synthesis was used to group results. Factors associated with greater uptake included older age, a college degree, a diagnosis of cancer, greater functional impairment, being white, greater understanding of poor prognosis and receiving or working in specialist palliative care. Barriers included having non-malignant diagnoses, having dependent children, being African American, and uncertainty about Advance Care Planning and its legal status. Individuals' previous illness experiences, preferences and attitudes also influenced their participation. Factors influencing the uptake of Advance Care Planning in palliative care are complex and multifaceted reflecting the diverse and often competing needs of patients, health professionals, legislature and health systems. Large population-based studies of palliative care patients are required to develop the sound theoretical and empirical foundation needed to improve uptake of Advance Care Planning in this setting. © The Author(s) 2014.
Nakazawa, Yoko; Yamamoto, Ryo; Kato, Masashi; Miyashita, Mitsunori; Kizawa, Yoshiyuki; Morita, Tatsuya
Palliative care education for health care professionals is a key element in improving access to quality palliative care. The Palliative Care Emphasis Program on Symptom Management and Assessment for Continuous Medical Education (PEACE) was designed to provide educational opportunities for all physicians in Japan. As of 2015, 57,764 physicians had completed it. The objective of this study was to estimate the effects of the program. This study was an analysis of 2 nationwide observational studies from 2008 and 2015. We conducted 2 questionnaire surveys for representative samples of physicians. The measurements used were the Palliative Care Knowledge Test (range, 0-100) and the Palliative Care Difficulties Scale (range, 1-4). Comparisons were made with the unpaired Student t test and with a multivariate linear regression model using 2 cohorts and a propensity score-matched sample. This study analyzed a total of 48,487 physicians in 2008 and a total of 2720 physicians in 2015. Between 2008 and 2015, physicians' knowledge and difficulties significantly improved on the Palliative Care Knowledge Test with total scores of 68 and 78, respectively (P < .001; effect size, 0.40) and on the Palliative Care Difficulties Scale with total scores of 2.65 and 2.49, respectively (P < .001; effect size, 0.29). Propensity-score matching resulted in 619 untrained physicians matched to 619 trained physicians, and physicians who trained with the PEACE program had a higher knowledge score (74 vs 86; P < .001; effect size, 0.64) and a lower difficulties score (2.6 vs 2.3; P < .001; effect size, 0.42). Physicians' knowledge of and difficulties with palliative care improved on a national level. The PEACE program may have contributed to these improvements. Cancer 2017. © 2017 American Cancer Society. © 2017 American Cancer Society.
Shea, Joyce; Grossman, Sheila; Wallace, Meredith; Lange, Jean
Advanced practice nurses (APRNs) have key roles in the care of patients who are nearing death and those living with a disabling chronic disease. This article describes a mixed-method formative assessment of 36 graduate nursing students' knowledge about and attitudes toward palliative care preliminary to curricular integration of the End-of-Life Nursing Education Consortium (ELNEC) graduate core modules. Students' knowledge about palliative care was assessed using the 106-item ELNEC examination. In addition, qualitative data were gathered regarding students' definitions of palliative care, the role of the APRN in palliative care, and their definitions of a "good" and "bad" death. Results revealed students' limited knowledge about palliative care. Qualitative findings indicated that most students exclusively linked palliative care with end-of-life care and believed that the treatment they provide should have the goal of prolonging life over maintaining quality of life. Implications for curriculum design, advanced practice role development, and collaboration with community health partners are discussed.
Background In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries. Methods and design Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. Conclusion Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care. PMID:23394401
Leemans, Kathleen; Cohen, Joachim; Francke, Anneke L; Vander Stichele, Robert; Claessen, Susanne Jj; Van den Block, Lieve; Deliens, Luc
In recent years, there have been several studies, using a wide variety of methods, aimed at developing quality indicators for palliative care. In this Quality Indicators for Palliative Care study (Q-PAC study) we have applied a scientifically rigorous method to develop a comprehensive and valid quality indicator set which can contribute to a standardized method for use in other countries. Firstly, an extensive literature review identified existing international quality indicators and relevant themes for measuring quality in palliative care. Secondly, the most relevant of these were selected by an expert panel. Thirdly, those prioritized by the experts were scored by a second multidisciplinary expert panel for usability and relevance, in keeping with the RAND/UCLA-method, combining evidence with consensus among stakeholders. This panel included carers and policymakers as well as patients and next-of-kin. Fourthly, the draft set was tested and evaluated in practice for usability and feasibility; the indicators were then translated into questionnaires presented to patients, next-of-kin and care providers. To encourage the acceptance and use of the indicators, stakeholders, including national palliative care organizations, were involved throughout the whole project. Our indicator development trajectory resulted in a set of quality indicators applicable to all patients in all palliative care settings. The set includes patient and relative perspectives and includes outcome, process and structure indicators. Our method can contribute internationally to a more standardized and rigorous approach to developing quality indicators for palliative care.
Duggleby, Wendy; Raudonis, Barbara M
To explore the myths about palliative care and older adults with cancer. Research literature and review articles. Several myths about older adults exist: older adults are the same as younger adults, older adults are all the same, and optimizing function and quality of life are not important outcomes. Little research has focused on older adults receiving palliative care and their families. The Oncology Nursing Society and Geriatric Oncology Consortium published the Joint Position Statement on Cancer Care in Older Adults acknowledging the unique needs of older adults with cancer. Application of this statement may be helpful in guiding inquiry and practice in the care for older adults receiving palliative care.
Palliative care is expanding out of the hospice, and out of the narrow confines of its association with cancer. It should be a part of all care. District nurses are ideally placed to implement and coordinate palliative care in the community, making use of the talents of many other agencies and professionals. However, because of a lack of communication between these agencies, there is confusion about their roles, and many patients may not be receiving optimal care. This article argues that by promoting interagency and interprofessional communication and cooperation, district nurses can strengthen their role at the heart of palliative care provision in the community.
Wittenberg-Lyles, Elaine M; Goldsmith, Joy; Ragan, Sandra L; Sanchez-Reilly, Sandra
This study focused on the undergraduate medical student to identify views and ideas held toward palliative care communication training, pedagogical approaches to this training, and its perceived effectiveness and use in the medical field. Two focus groups consisting of fourth-year medical students were conducted, and their responses were analyzed using grounded theory categorization. Results indicated that students: (a) prefer to learn nonverbal communication techniques, (b) believe that natural ability and experience outweigh communication curriculum, (c) view the skill of breaking bad news as largely dependent on knowledge and expertise, and (d) prefer curriculum on palliative care and hospice to consist of information (eg, advance directives) rather than communication skills. Implications for these interpretive themes are discussed as well as future research and practice.
Kaye, Erica C; Rubenstein, Jared; Levine, Deena; Baker, Justin N; Dabbs, Devon; Friebert, Sarah E
Early integration of pediatric palliative care (PPC) for children with life-threatening conditions and their families enhances the provision of holistic care, addressing psychological, social, spiritual, and physical concerns, without precluding treatment with the goal of cure. PPC involvement ideally extends throughout the illness trajectory to improve continuity of care for patients and families. Although current PPC models focus primarily on the hospital setting, community-based PPC (CBPPC) programs are increasingly integral to the coordination, continuity, and provision of quality care. In this review, the authors examine the purpose, design, and infrastructure of CBPPC in the United States, highlighting eligibility criteria, optimal referral models to enhance early involvement, and fundamental tenets of CBPPC. This article also appraises the role of CBPPC in promoting family-centered care. This model strives to enhance shared decision making, facilitate seamless handoffs of care, maintain desired locations of care, and ease the end of life for children who die at home. The effect of legislation on the advent and evolution of CBPPC also is discussed, as is an assessment of the current status of state-specific CBPPC programs and barriers to implementation of CBPPC. Finally, strategies and resources for designing, implementing, and maintaining quality standards in CBPPC programs are reviewed.
Ingleton, Christine; Gardiner, Clare; Seymour, Jane E; Richards, Naomi; Gott, Merryn
Education and training are seen as 'absolutely essential parts of providing palliative care'. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the 'cure' orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.
Abstract Palliative care programs are rapidly evolving in acute care facilities. Increased and earlier access has been advocated for patients with life-threatening illnesses. Existing programs would need major growth to accommodate the increased utilization. The objective of this review is to provide an update on the current structures, processes, and outcomes of the Supportive and Palliative Care Program at the University of Texas M.D. Anderson Cancer Center (UTMDACC), and to use the update as a platform to discuss the challenges and opportunities in integrating palliative and supportive services in a tertiary care cancer center. Our interprofessional program consists of a mobile consultation team, an acute palliative care unit, and an outpatient supportive care clinic. We will discuss various metrics including symptom outcomes, quality of end-of-life care, program growth, and financial issues. Despite the growing evidence to support early palliative care involvement, referral to palliative care remains heterogeneous and delayed. To address this issue, we will discuss various conceptual models and practical recommendations to optimize palliative care access. PMID:22925157
Hacıkamiloglu, Ezgi; Utku, Ezgi Simsek; Cukurova, Zafer; Keskinkilic, Bekir; Topcu, Ibrahim; Gultekin, Murat; Silbermann, Michael
The Middle East has been struggling with basic issues of cancer care, and in specific, palliative care, at the primary health care level in the communities. The Middle East Cancer Consortium designated this issue as the highest priority of its activities in the region. Following basic and advanced courses and national and international workshops, local governments recognized the essentiality of developing palliative care services in their respective countries. As the result of these training activities, in 2010, the Ministry of Health in Turkey initiated a novel program whereby population-based and home-based palliative care teams were developed throughout the country, including peripheral regions in the countries where appropriate care was not available. This initiative led to a dramatic increase in the number of cancer patients receiving palliative care at their homes. The Turkish initiative can serve as a model to other countries in the Middle East and beyond it.
von Plessen, Christian; Nielsen, Thyge L; Steffensen, Ida E; Larsen, Shuruk Al-Halwai; Taudorf, Ebbe
Terminal chronic obstructive pulmonary disease (COPD) and advanced cancer have similar prognosis and symptom burden. However, palliative care of patients with terminal COPD has been neglected in Denmark. We describe the symptoms of terminal COPD and suggest criteria for defining the palliative phase of the disease. Furthermore we discuss the prognostic and ethical challenges for patients, their families and their caregivers. Finally, we summarize the current evidence for palliative treatment of dyspnoea and ways to evaluate response to treatment.
Simoens, Steven; Kutten, Betty; Keirse, Emmanuel; Berghe, Paul Vanden; Beguin, Claire; Desmedt, Marianne; Deveugele, Myriam; Léonard, Christian; Paulus, Dominique; Menten, Johan
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.
Farber, Eugene W; Marconi, Vincent C
Advances in treatment are contributing to substantial increases in life expectancy for individuals living with HIV, prompting a need to develop care models for the effective management of HIV as a chronic illness. With many individuals continuing to experience symptoms and complications that add to the disease burden across the spectrum of HIV disease, the discussion herein explores the complementary role that early palliative care can play in HIV primary care as a strategy for enhancing long-term quality of life. After first defining the concept of early palliative care, its scope in the context of current clinical realities in HIV treatment and implications for HIV care models is described. After reviewing the emerging extant research literature on HIV palliative care outcomes, a program description is offered as an illustration of how palliative care integration with HIV primary care can be achieved.
Kwekkeboom, Kristine L; Vahl, Cheryl; Eland, Joann
Currently, major deficiencies exist in undergraduate nursing education for end-of-life care. Nursing students report feeling anxious and unprepared to be with patients who are dying. A Palliative Care Companion program that allows undergraduate nursing students to volunteer to spend time with patients at the end of life provides a unique educational opportunity to enhance students' knowledge and attitudes toward palliative care. In addition, the program offers a service to patients and families by providing a nonmedical, caring human presence to patients who may be alone, lonely, or bored. In accordance with tenets of Experiential Learning Theory, a Palliative Care Companion program was developed and revised using feedback from initial participants and facilitators. Data collected during the first two semesters indicated increased knowledge of palliative care, improved attitudes about care at the end of life, and fewer concerns about providing nursing care to dying patients, when participating students were compared to their undergraduate peers.
Humphrey, Lisa; Kang, Tammy I
Children with advanced cancer, including those with hematologic malignancies, can benefit from interdisciplinary palliative care services. Palliative care includes management of distressing symptoms, attention to psychosocial and spiritual needs, and assistance with navigating complex medical decisions with the ultimate goal of maximizing the quality-of-life of the child and family. Palliative care is distinct from hospice care and can assist with the care of patients throughout the cancer continuum, irrespective of prognosis. While key healthcare organizations, including the Institute of Medicine, the American Academy of Pediatrics and the American Society of Clinical Oncology among many others endorse palliative care for children with advanced illness, barriers to integration of palliative care into cancer care still exist. Providing assistance with advance care planning, guiding patients and families through prognostic uncertainty, and managing transitions of care are also included in goals of palliative care involvement. For patients with advanced malignancy, legislation, included in the Patient Protection and Affordable Health Care Act allows patients and families more options as they make the difficult transition from disease directed therapy to care focused on comfort and quality-of-life.
Ghandourh, Wsam A
Advanced cancer patients commonly have misunderstandings about the intentions of treatment and their overall prognosis. Several studies have shown that large numbers of patients receiving palliative radiation or chemotherapy hold unrealistic hopes of their cancer being cured by such therapies, which can affect their ability to make well-informed decisions about treatment options. This review aimed to explore this discrepancy between patients' and physicians' expectations by investigating three primary issues: (1) the factors associated with patients developing unrealistic expectations; (2) the implications of having unrealistic hopes and the effects of raising patients' awareness about prognosis; and (3) patients' and caregivers' perspective on disclosure and their preferences for communication styles. Relevant studies were identified by searching electronic databases including Pubmed, EMBASE and ScienceDirect using multiple combinations of keywords, which yielded a total of 65 articles meeting the inclusion criteria. The discrepancy between patients' and doctors' expectations was associated with many factors including doctors' reluctance to disclose terminal prognoses and patients' ability to understand or accept such information. The majority of patients and caregivers expressed a desire for detailed prognostic information; however, varied responses have been reported on the preferred style of conveying such information. Communication styles have profound effects on patients' experience and treatment choices. Patients' views on disclosure are influenced by many cultural, psychological and illness-related factors, therefore individuals' needs must be considered when conveying prognostic information. More research is needed to identify communication barriers and the interventions that could be used to increase patients' satisfaction with palliative care.
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the ‘top 10’ priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future. PMID:28386399
Liossi, Christina; Anderson, Anna-Karenia; Howard, Richard F
Priority setting for healthcare research is as important as conducting the research itself because rigorous and systematic processes of priority setting can make an important contribution to the quality of research. This project aimed to prioritise clinical therapeutic uncertainties in paediatric pain and palliative care in order to encourage and inform the future research agenda and raise the profile of paediatric pain and palliative care in the United Kingdom. Clinical therapeutic uncertainties were identified and transformed into patient, intervention, comparison and outcome (PICO) format and prioritised using a modified Nominal Group Technique. Members of the Clinical Studies Group in Pain and Palliative Care within National Institute for Health Research (NIHR) Clinical Research Network (CRN)-Children took part in the prioritisation exercise. There were 11 clinically active professionals spanning across a wide range of paediatric disciplines and one parent representative. The top three research priorities related to establishing the safety and efficacy of (1) gabapentin in the management of chronic pain with neuropathic characteristics, (2) intravenous non-steroidal anti-inflammatory drugs in the management of post-operative pain in pre-schoolers and (3) different opioid formulations in the management of acute pain in children while at home. Questions about the long-term effect of psychological interventions in the management of chronic pain and various pharmacological interventions to improve pain and symptom management in palliative care were among the 'top 10' priorities. The results of prioritisation were included in the UK Database of Uncertainties about the Effects of Treatments (DUETS) database. Increased awareness of priorities and priority-setting processes should encourage clinicians and other stakeholders to engage in such exercises in the future.
Fuly, Patrícia Dos Santos Claro; Pires, Livia Márcia Vidal; Souza, Claudia Quinto Santos de; Oliveira, Beatriz Guitton Renaud Baptista de; Padilha, Katia Grillo
To verify the nursing workload required by cancer patients undergoing palliative care and possible associations between the demographic and clinical characteristics of the patients and the nursing workload. This is a quantitative, cross-sectional, prospective study developed in the Connective Bone Tissue (TOC) clinics of Unit II of the Brazilian National Cancer Institute José Alencar Gomes da Silva with patients undergoing palliative care. Analysis of 197 measures of the Nursing Activities Score (NAS) revealed a mean score of 43.09% and an association between the performance status of patients undergoing palliative care and the mean NAS scores. The results of the study point to the need to resize the team of the unit. The NAS has proven to be a useful tool in oncologic clinical units for patients undergoing palliative care. Verificar a carga de trabalho de enfermagem requerida por pacientes com câncer sob cuidados paliativos e possíveis associações entre as características demográficas e clínicas dos pacientes e a carga de trabalho de enfermagem. Trata-se de um estudo de abordagem quantitativa, transversal, prospectivo, desenvolvido na clínica de Tecido Ósseo Conectivo (TOC) da Unidade II do Instituto Nacional de Câncer José Alencar Gomes da Silva, com pacientes em cuidados paliativos. A análise de 197 medidas do Nursing Activities Score (NAS) revelou um escore médio de 43,09% e uma associação entre a performance status de pacientes em cuidados paliativos com os valores médios do NAS. Os resultados do estudo apontam para a necessidade de redimensionamento da equipe da Unidade. O NAS mostrou-se um instrumento passível de utilização em unidades clínicas oncológicas, com pacientes em cuidados paliativos.
Street, A; Blackford, J
This paper discusses the findings of a critical study that examined the communication patterns between nurses and general practitioners (GPs) providing palliative care in Australia. Interviews and focus groups involved 40 palliative care nurses who worked in the three settings of care: community, hospice and hospital. Issues that impeded effective communication strategies between palliative care nurses and GPs were networking, case management, multiple service providers, lack of standardized documentation and formal tracking of clients, along with difficulties in transmission of relevant practice knowledge. Supporting strategies for effective formal modes of communicating and reporting are described.
Sinclair, Shane; Pereira, Jose; Raffin, Shelley
Research related to spirituality and health has developed from relative obscurity to a thriving field of study over the last 20 years both within palliative care and within health care in general. This paper provides a descriptive review of the literature related to spirituality and health, with a special focus on spirituality within palliative and end-of-life care. CINAHL and MEDLINE were searched under the keywords "spirituality" and "palliative." The review revealed five overarching themes in the general spirituality and health literature: (1) conceptual difficulties related to the term spirituality and proposed solutions; (2) the relationship between spirituality and religion; (3) the effects of spirituality on health; (4) the subjects enrolled in spirituality-related research; and (5) the provision of spiritual care. While the spirituality literature within palliative care shared these overarching characteristics of the broader spirituality and health literature, six specific thematic areas transpired: (1) general discussions of spirituality in palliative care; (2) the spiritual needs of palliative care patients; (3) the nature of hope in palliative care; (4) tools and therapies related to spirituality; (5) effects of religion in palliative care; and (6) spirituality and palliative care professionals. The literature as it relates to these themes is summarized in this review. Spirituality is emerging largely as a concept void of religion, an instrument to be utilized in improving or maintaining health and quality of life, and focussed predominantly on the "self" largely in the form of the patient. While representing an important beginning, the authors suggest that a more integral approach needs to be developed that elicits the experiential nature of spirituality that is shared by patients, family members, and health care professionals alike.
McConnell, Tracey; Porter, Sam
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.
Zwerdling, Theodore; Hamann, Kevin; Meyers, Frederick
Historically, the concept of palliative care has been limited to hospice and end-of-life services. Recently, palliative care has been expanded to emphasize its integration throughout an illness. We suggest that palliative care provides an opportunity to prevent illness. Palliative care providers can effectively reduce the risk of illness in families by employing methods and strategies of preventive medicine. We illustrate three such cases. Patients and survivors may benefit from appropriate recognition and referral to prevent potential medical, social, and psychological problems. For preventive medicine to become fully exploited by palliative care providers, curricula will need to be developed. Risk assessment indicators of heritable and acquired conditions will define core functions of this educational process. Relevant topics should encompass basic preventive medicine methods, methods to disseminate assigned risk to the palliative care team, and referral mechanisms to specialists with expertise in the identified area(s) of concern. Opportunities to integrate preventive care into end-of-life services will create a new dimension for comprehensive palliative care.
Wu, Hung-Lan; Volker, Deborah L
This article presents a discussion of the relevance of Humanistic Nursing Theory to hospice and palliative care nursing. The World Health Organization has characterized the need for expert, palliative and end-of-life care as a top priority for global health care. The specialty of hospice and palliative care nursing embraces a humanistic caring and holistic approach to patient care. As this resonates with Paterson and Zderad's Humanistic Nursing Theory, an understanding of hospice nurses' experiences can be investigated by application of relevant constructs in the theory. This article is based on Paterson and Zderad's publications and other theoretical and research articles and books focused on Humanistic Nursing Theory (1976-2009), and data from a phenomenological study of the lived experience of Taiwanese hospice nurses conducted in 2007. Theoretical concepts relevant to hospice and palliative nursing included moreness-choice, call-and-response, intersubjective transaction, uniqueness-otherness, being and doing and community. The philosophical perspectives of Humanistic Nursing Theory are relevant to the practice of hospice and palliative care nursing. By 'being with and doing with', hospice and palliative nurses can work with patients to achieve their final goals in the last phase of life. Use of core concepts from Humanistic Nursing Theory can provide a unifying language for planning care and describing interventions. Future research efforts in hospice and palliative nursing should define and evaluate these concepts for efficacy in practice settings. © 2011 Blackwell Publishing Ltd.
Isaacson, Mary; Karel, Beth; Varilek, Brandon M; Steenstra, Whitney J; Tanis-Heyenga, Jordan P; Wagner, Amanda
Palliative care options are limited for Native Americans (NA) in South Dakota (SD). This exploratory study offers the perspectives of Native and non-Native health care professionals regarding palliative care specific to NAs. Semi-structured interviews were conducted (N = 7) with participants representing NA (4) and non-Native (3) ethnicities. Non-Native participants were practicing health care professionals in palliative medicine, whereas the NA health care professionals had experience with palliative care. Concept analysis revealed two main themes and five subthemes: (a) barriers to palliative care, for example, insufficient funding, lack of infrastructure, and misconceptions; and (b) implementation strategies, for example, openness and listening and creating the right team. Genuine interest and concern exists for the provision of palliative care to NA communities using collaborative and innovative approaches. To address the health disparities of the NA population specific to palliative care, public health policy reform and education for health professionals are necessary. © The Author(s) 2014.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
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.
Downing, J; Kiman, R; Boucher, S; Nkosi, B; Steel, B; Marston, C; Lascar, E; Marston, J
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
End-of-life care is an integral part of neurology practice, and neuropalliative medicine is an emerging neurology subspeciality. This begins with serious illness communication as a protocol-based process that depends on an evaluation of patient autonomy and accurate prognostication. Communication needs vary between chronic, life-limiting neurologic illnesses and acute brain injury. In an ideal situation, the patient's wishes are spelled out in advance care plans and living wills, and surrogates have only limited choices for implementation. Palliative care prepares for decline and death as an expected outcome and focuses on improving the quality of life for both the patients and their caregivers. In the Intensive Care Unit, this may require clarity on withholding and withdrawal of treatment. In all locations of care, the emphasis is on symptom control. Neurologists are the quintessential physicians, and our “dharma” is best served by empathetically bringing our technical knowledge and communication skills into easing this final transition for our patients and their families to the best of our ability. PMID:27891024
Boston, P H
This paper reports the results of a qualitative study to evaluate palliative care nurses' knowledge and experiences of providing culturally responsive palliative care within the cost constraints of a work-classification system. Multiple, in-depth interviews were conducted with 50 patients, their families, and health care providers. The study also employed observation techniques and documentary review of patient records. The study concludes that workload-classification measurement initiatives, while useful as a means of budgetary control, are often separate from and unrelated to the interests of cultural groups in palliative care populations.
Hatton, Ian; McDonald, Keith; Nancarrow, Lynette; Fletcher, Keith
In September 2000 the Commonwealth released, as part of its National Palliative Care Strategy under the Australian Health Care Agreements, a National Framework for Palliative Care Service Development. The new National Framework stressed an important set of values to guide models of palliative care delivery. It notes that the challenge is to secure the place of palliative care as an integral part of health care across Australia, routinely available within local communities to those people who need it. Care and support for people who are dying and their families need to be built not only into health care services, but also into the fabric of communities and their support networks. While few would disagree with this, little is known about how best to achieve it in rural Australia. The Griffith Area Palliative Care Service (GAPS) is a two-year pilot project delivering a palliative care service through a truly integrated approach to care for patients, their carers and families within the Griffith Local Government Area and Carrathool Shire areas. This paper describes how GAPS is successfully meeting the challenges of service provision to rural and remote areas.
Hudson, Peter; Street, Annette; Graham, Suzanne; Aranda, Sanchia; O'Connor, Margaret; Thomas, Kristina; Jackson, Kate; Spruyt, Odette; Ugalde, Anna; Philip, Jennifer
The difficulties in conducting palliative care research have been widely acknowledged. In order to generate the evidence needed to underpin palliative care provision, collaborative research is considered essential. Prior to formalizing the development of a research network for the state of Victoria, Australia, a preliminary study was undertaken to ascertain interest and recommendations for the design of such a collaboration. Three data-collection strategies were used: a cross-sectional questionnaire, interviews, and workshops. The questionnaire was completed by multidisciplinary palliative care specialists from across the state (n = 61); interviews were conducted with senior clinicians and academics (n = 21) followed by two stakeholder workshops (n = 29). The questionnaire was constructed specifically for this study, measuring involvement of and perceptions of palliative care research. Both the interview and the questionnaire data demonstrated strong support for a palliative care research network and aided in establishing a research agenda. The stakeholder workshops assisted with strategies for the formation of the Palliative Care Research Network Victoria (PCRNV) and guided the development of the mission and strategic plan. The research and efforts to date to establish the PCRNV are encouraging and provide optimism for the evolution of palliative care research in Australia. The international implications are highlighted.
The community clinical nurse specialist in palliative care role has evolved in an uncoordinated manner resulting in a variety of grades of nurse with differing role expectations. In general the CNS role consists of a clinical, educational, strategic and managerial remit. The reality of working with such a diverse role creates tension and conflict for the CNS between personal, organization and practical expectations. Despite this the community palliative care CNS is central to the future development of palliative care services in the community generating a culture of sharing knowledge and expertise. This will however require further investigation into the impact these demands will have on the individual.
Itch/pruritus can be very distressing in palliative care population and often is difficult to treat. Conventional antihistamines lack efficacy. Cutaneous and central pathogenesis of itch is extremely complex and unclear, making its treatment challenging. Neuronal mechanisms have been identified in the pathophysiology of itch hence providing a myriad of therapeutic options. It has been established that pruritus and pain neuronal pathway interact with each other, hence neuropathic analgesics like gabapentin has shown to be efficacious antipruritic therapeutic option. Gabapentin impedes transmitting nociceptive sensations to brain, thus also suppressing pruritus. Gabapentin is safe and found to be effective in uremic pruritus, cancer/hematologic causes, opiod-induced itch, brachioradial pruritis, burns pruritus, and pruritus of unknown origin. Further research is required in this area to establish whether gabapentin is consistently effective.
Doré-Pautonnier, Delphine; Baussant-Crenn, Camille; Frattini, Marie-Odile; Mino, Jean-Christophe; Rennesson, Marina
The French National Palliative Care Resource Centre (CNDR) provides people impacted by the end of life, death and bereavement with a range of constantly evolving services. Spreading the palliative approach in order to enable everyone to benefit from it and appropriate it constitutes the main mission of the CNDR.
Civetta, J M
In the area of end-of-life bioethical issues, patients, families, and health care providers do not understand basic principles, often leading to anguish, guilt, and anger. Providers lack communication skills, concepts, and practical bedside information. Linking societal values of the sanctity of life and quality of life with medical goals of preservation of life and alleviation of suffering respectively provides an essential structure. Medical care focuses on cure when possible but when the patient is dying, the focus switches to caring for patients and their families. Clinicians need to learn how to balance the benefits and burdens of medications and treatments, control symptoms, and orchestrate withdrawal of treatment. Finally, all need to learn more about the dying process to benefit society, their own families, and themselves.
Krakauer, Eric L; Ngoc, Nguyen Thi Minh; Green, Kimberly; Van Kham, Le; Khue, Luong Ngoc
Vietnam is struggling to meet the growing need for both disease-modifying and palliative care for people with life-threatening chronic diseases such as HIV/AIDS and cancer. Recently, Vietnam initiated rapid development of a national palliative care program for HIV/AIDS and cancer patients that builds on existing palliative care programs and experience and integrates palliative care into standard HIV/AIDS and cancer care. National palliative care guidelines have been issued by the Ministry of Health based on a rapid situation analysis. Plans now call for review and revision of opioid laws and regulations to increase availability of opioids for medical use, training in palliative care for clinicians throughout the country, and development of palliative care programs both in the community and in inpatient referral centers.
Broeckaert, B; Gielen, J; Van Iersel, T; Van den Branden, S
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
Unlike in other nations, in Canada palliative care has its origins in university hospitals. It has subsequently developed in a few Canadian schools as an academic discipline closely linked with oncology programs. Although this model is successful, other faculties of medicine and cancer centres have been slow to emulate it. Today, the situation is rapidly changing, and both palliative care and oncology professionals are re-examining the manifest need for collaborative efforts in patient care, research and education. Palliative care must be regarded as an essential component of cancer care, its principles must be applied throughout the course of the illness and, as in other phases of cancer control, palliative care should be regarded as an exercise in prevention--prevention of suffering. This article discusses practical applications that flow from acceptance of these concepts. PMID:9676548
Ferrell, Betty R; Temel, Jennifer S; Temin, Sarah; Alesi, Erin R; Balboni, Tracy A; Basch, Ethan M; Firn, Janice I; Paice, Judith A; Peppercorn, Jeffrey M; Phillips, Tanyanika; Stovall, Ellen L; Zimmermann, Camilla; Smith, Thomas J
Purpose To provide evidence-based recommendations to oncology clinicians, patients, family and friend caregivers, and palliative care specialists to update the 2012 American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) on the integration of palliative care into standard oncology care for all patients diagnosed with cancer. Methods ASCO convened an Expert Panel of members of the ASCO Ad Hoc Palliative Care Expert Panel to develop an update. The 2012 PCO was based on a review of a randomized controlled trial (RCT) by the National Cancer Institute Physicians Data Query and additional trials. The panel conducted an updated systematic review seeking randomized clinical trials, systematic reviews, and meta-analyses, as well as secondary analyses of RCTs in the 2012 PCO, published from March 2010 to January 2016. Results The guideline update reflects changes in evidence since the previous guideline. Nine RCTs, one quasiexperimental trial, and five secondary analyses from RCTs in the 2012 PCO on providing palliative care services to patients with cancer and/or their caregivers, including family caregivers, were found to inform the update. Recommendations Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs. Providers may refer family and friend caregivers of patients with early or advanced cancer to palliative care services.
Floriani, Ciro Augusto; Schramm, Fermin Roland
Palliative care, a model in end-of-life care, is currently undergoing expansion in Brazil. This article emphasizes the need to implement palliative care in primary health care, with an important role in end-of-life care, especially in areas without specialized palliative-care teams. The article discusses key aspects in the organization of this treatment modality and analyzes how palliative care could and should be implemented within primary health care in Brazil. The article describes several challenges for health teams to provide such care, related to the primary caregiver, inherent ethical conflicts, and human resource allocation.
Bakitas, Marie; Lyons, Kathleen Doyle; Hegel, Mark T.; Ahles, Tim
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
Lind, S; Wallin, L; Brytting, T; Fürst, C J; Sandberg, J
In high-income countries a large proportion of all deaths occur in hospitals. A common way to translate knowledge into clinical practice is developing guidelines for different levels of health care organisations. During 2012, national clinical guidelines for palliative care were published in Sweden. Later, guidance for palliative care was issued by the National Board of Health and Welfare. The aim of this study was two-fold: to investigate perceptions regarding these guidelines and identify obstacles and opportunities for implementation of them in acute care hospitals. Interviews were conducted with local politicians, chief medical officers and health professionals at acute care hospitals. The Consolidated Framework for Implementation Research was used in a directed content analysis approach. The results showed little knowledge of the two documents at all levels of the health care organisation. Palliative care was primarily described as end of life care and only few of the participants talked about the opportunity to integrate palliative care early in a disease trajectory. The environment and culture at hospitals, characterised by quick decisions and actions, were perceived as obstacles to implementation. Health professionals' expressed need for palliative care training is an opportunity for implementation of clinical guidelines. There is a need for further implementation of palliative care in hospitals. One option for further research is to evaluate implementation strategies tailored to acute care. Copyright © 2017 Elsevier B.V. All rights reserved.
Chin, Loh Ee; Loong, Lam Chee; Ngen, Chin Cheuk; Beng, Tan Seng; Shireen, Chin; Kuan, Wong Sook; Shaw, Rosalie
Good communication is essential but sometimes challenging in pediatric palliative care. We describe 3 cases whereby miniature chairs made of various materials and colors were used successfully to encourage communication among pediatric patients, family, and health care professionals. This chair-inspired model may serve as a simple tool to facilitate complex discussions and to enable self-expression by children in the pediatric palliative care setting. © The Author(s) 2013.
Legalisation of physician-assisted dying (PAD) remains a highly contested issue. In the Australasian context, the opinion and perspective of palliative care specialists have not been captured empirically, and are required to inform better the debate around this issue, moving forward. To identify current attitudes and experiences of palliative care specialists in Australasia regarding requests for physician-assisted suicide and voluntary euthanasia, and to capture the opinion of palliative care specialists on the legalisation of these practices in the Australasian context. An anonymous, cross-sectional, online survey of Australasian specialists in palliative care, addressing the following six areas: (i) demographics; (ii) frequency of requests, and response given; (iii) understanding of the term 'voluntary euthanasia'; (iv) opinion regarding legalisation of physician-assisted suicide and voluntary euthanasia in Australasia, and willingness to participate if legal; (v) identification of the most important values guiding this opinion; and (vi) anticipated impact that legalisation of assisted death would have on palliative care practice. Important findings include: (i) palliative care specialists are largely opposed to the legalisation of PAD; (ii) the proportional titration of opioids is not understood by any palliative care specialist studied to be 'voluntary euthanasia'; and (iii) there is a wide variation in frequency of requests, and one-third of palliative care specialists express discomfort in dealing with requests for assisted suicide or euthanasia. Key areas for future research at the interface between PAD and best practice end-of-life care are identified, including exploration into why palliative care specialists are largely opposed to PAD, and consideration of the impact 'the opioid misconception' may have on the literature informing this debate. © 2016 Royal Australasian College of Physicians.
Lux, Michael R; Protus, Bridget McCrate; Kimbrel, Jason; Grauer, Phyllis
Patients nearing the end of life may experience symptoms that are refractory to standard therapeutic options. Physicians may consider palliative sedation to relieve intolerable suffering. There is limited clinical literature regarding preferred medications for palliative sedation. To determine the preferred medications physicians use when implementing palliative sedation. An Internet-based, cross-sectional survey of hospice and palliative care physicians in the United States. A link to the survey was e-mailed to 3130 physician members of the American Academy of Hospice and Palliative Medicine, of which 381 physicians completed the survey. Physicians were not required to answer all questions. Nearly all (n = 335, 99%) respondents indicated that palliative sedation may be used (acceptable by 73% [n = 248] for refractory symptoms and acceptable by 26% [n = 87] only for imminently dying patients). Seventy-nine percent (n = 252) believed that opioids should not be used to induce palliative sedation but should be continued to provide pain control. Midazolam was the most commonly selected first-line choice for palliative sedation (n = 155, 42%). The most commonly reported second-line agents for the induction of palliative sedation were lorazepam, midazolam (for those who did not select midazolam as first-line agent), and phenobarbital with a reported preference of 20% (n = 49), 19% (n = 46), and 17% (n = 40), respectively. Of the physicians surveyed, 99% (n = 335) felt that palliative sedation is a reasonable treatment modality. Midazolam was considered a drug of choice for inducing and maintaining sedation, and opioids were continued for pain control.
Larson, Anne M
Liver disease results in over four million physician visits and over 750,000 hospitalizations per year in the USA. Those with chronic liver disease frequently progress to cirrhosis, end-stage liver disease (ESLD), and death. Patients with ESLD experience numerous complications, including muscle cramps, confusion (hepatic encephalopathy), protein calorie malnutrition, muscle wasting, fluid overload (ascites, edema), bleeding (esophagogastric variceal hemorrhage), infection (spontaneous bacterial peritonitis), fatigue, anxiety, and depression. Despite significant improvements in palliation of these complications, patients still suffer reduced quality of life and must confront the fact that their disease will often inexorably progress to death. Liver transplantation is a valid option in this setting, increasing the duration of survival and palliating many of the symptoms. However, many patients die waiting for an organ or are not candidates for transplantation due to comorbid illness. Others receive a transplant but succumb to complications of the transplant itself. Patients and families must struggle with simultaneously hoping for a cure while facing a life-threatening illness. Ideally, the combination of palliative care with life-sustaining therapy can maximize the patients' quality and quantity of life. If it becomes clear that life-sustaining therapy is no longer an option, these patients are then already in a system to help them with end-of-life care.
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
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.
Mazutti, Sandra Regina Gonzaga; Nascimento, Andréia de Fátima; Fumis, Renata Rego Lins
Objective To estimate the incidence of limitations to Advanced Life Support in critically ill patients admitted to an intensive care unit with integrated palliative care. Methods This retrospective cohort study included patients in the palliative care program of the intensive care unit of Hospital Paulistano over 18 years of age from May 1, 2011, to January 31, 2014. The limitations to Advanced Life Support that were analyzed included do-not-resuscitate orders, mechanical ventilation, dialysis and vasoactive drugs. Central tendency measures were calculated for quantitative variables. The chi-squared test was used to compare the characteristics of patients with or without limits to Advanced Life Support, and the Wilcoxon test was used to compare length of stay after Advanced Life Support. Confidence intervals reflecting p ≤ 0.05 were considered for statistical significance. Results A total of 3,487 patients were admitted to the intensive care unit, of whom 342 were included in the palliative care program. It was observed that after entering the palliative care program, it took a median of 2 (1 - 4) days for death to occur in the intensive care unit and 4 (2 - 11) days for hospital death to occur. Many of the limitations to Advanced Life Support (42.7%) took place on the first day of hospitalization. Cardiopulmonary resuscitation (96.8%) and ventilatory support (73.6%) were the most adopted limitations. Conclusion The contribution of palliative care integrated into the intensive care unit was important for the practice of orthothanasia, i.e., the non-extension of the life of a critically ill patient by artificial means. PMID:27626949
Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C
With increasing emphasis on the provision of home-based palliative care in Canada, economic evaluation is warranted, given its tremendous demands on family caregivers. Despite this, very little is known about the economic outcomes associated with home-based unpaid care-giving at the end of life. The aims of this study were to (i) assess the magnitude and share of unpaid care costs in total healthcare costs for home-based palliative care patients, from a societal perspective and (ii) examine the sociodemographic and clinical factors that account for variations in this share. One hundred and sixty-nine caregivers of patients with a malignant neoplasm were interviewed from time of referral to a home-based palliative care programme provided by the Temmy Latner Centre for Palliative Care at Mount Sinai Hospital, Toronto, Canada, until death. Information regarding palliative care resource utilisation and costs, time devoted to care-giving and sociodemographic and clinical characteristics was collected between July 2005 and September 2007. Over the last 12 months of life, the average monthly cost was $14 924 (2011 CDN$) per patient. Unpaid care-giving costs were the largest component - $11 334, accounting for 77% of total palliative care expenses, followed by public costs ($3211; 21%) and out-of-pocket expenditures ($379; 2%). In all cost categories, monthly costs increased exponentially with proximity to death. Seemingly unrelated regression estimation suggested that the share of unpaid care costs of total costs was driven by patients' and caregivers' sociodemographic characteristics. Results suggest that overwhelming the proportion of palliative care costs is unpaid care-giving. This share of costs requires urgent attention to identify interventions aimed at alleviating the heavy financial burden and to ultimately ensure the viability of home-based palliative care in future. © 2013 John Wiley & Sons Ltd.
Porstner, Dagmar; Masel, Eva K; Heck, Ursula
The main task of palliative care specialists is to focus on symptom control such as pain, nausea or fatigue. Thorough anamnesis, physical examination, laboratory examination, and differential diagnosis can ensure appropriate treatment. In an increasing number of cases psychiatric conditions like depression or anxiety increase also occur so palliative care physicians need to be more prepared to handle them. The question of this case report is, how a palliative care specialist can distinguish between a malignant disease or neurological disease progression and a presentation primarily psychiatric in etiology, as is the case in factitious disorders. We are also interested in the incidence rate of such factitious disorders. Our case study demonstrates that it is rare but not impossible that a doctor will encounter factitious symptoms in the palliative setting. This suggest being aware of evidence of psychiatric origins even in discharge letters and referrals that indicate palliative care needs, to ensure that palliative care really is the best treatment option for the patient. We do believe such cases to be rare in a palliative setting, however.
Richfield, Edward W; Jones, Edward J S; Alty, Jane E
Parkinson's disease is a common, life-limiting, neurodegenerative condition. Despite calls for improved access to palliative care for people with Parkinson's disease, services have been slow in developing. Obstacles include poor understanding and recognition of palliative care needs, the role for specialist palliative care services and an agreed structure for sustainable palliative care provision. To summarise the evidence base for palliative care in Parkinson's disease, linking current understanding with implications for clinical practice and identifying areas for future research. Convention recognises a final 'palliative phase' in Parkinson's disease, while qualitative studies suggest the presence of palliative care need in Parkinson's disease from diagnosis. Clinical tools to quantify palliative symptom burden exist and have helped to identify targets for intervention. Dementia is highly prevalent and influences many aspects of palliative care in Parkinson's disease, with particular implications for end-of-life care and advance care planning. The 'palliative phase' represents a poor entry point for consideration of palliative care need in Parkinson's disease. An alternative, integrated model of care, promoting collaboration between specialist palliative and neurological services, is discussed, along with some specific palliative interventions. WHAT IS UNKNOWN: Limited evidence exists regarding timing of palliative interventions, triggers for specialist referral and management of terminal care. Research examining access to palliative care and management of terminal symptoms will assist development of sustainable, integrated palliative care services for Parkinson's disease.
Results from the first randomized clinical trial of its kind have revealed a surprising and welcome benefit of early palliative care for patients with advanced lung cancer—longer median survival. Although several researchers said that the finding needs to be confirmed in other trials of patients with other cancer types, they were cautiously optimistic that the trial results could influence oncologists’ perceptions and use of palliative care. |
Weaver, M S; Yao, A J J; Renner, L A; Harif, M; Lam, C G
Background: Given the burden of childhood cancer and palliative care need in Africa, this paper investigated the paediatric and palliative care elements in cancer control plans. Methods: We conducted a comparative content analysis of accessible national cancer control plans in Africa, using a health systems perspective attentive to context, development, scope, and monitoring/evaluation. Burden estimates were derived from World Bank, World Health Organisation, and Worldwide Palliative Care Alliance. Results: Eighteen national plans and one Africa-wide plan (10 English, 9 French) were accessible, representing 9 low-, 4 lower-middle-, and 5 upper-middle-income settings. Ten plans discussed cancer control in the context of noncommunicable diseases. Paediatric cancer was mentioned in 7 national plans, representing 5127 children, or 13% of the estimated continental burden for children aged 0–14 years. Palliative care needs were recognised in 11 national plans, representing 157 490 children, or 24% of the estimated Africa-wide burden for children aged 0–14 years; four plans specified paediatric palliative needs. Palliative care was itemised in four budgets. Sample indicators and equity measures were identified, including those highlighting contextual needs for treatment access and completion. Conclusions: Recognising explicit strategies and funding for paediatric and palliative services may guide prioritised cancer control efforts in resource-limited settings. PMID:26042935
PaTz groups for primary palliative care: reinventing cooperation between general practitioners and district nurses in palliative care: an evaluation study combining data from focus groups and a questionnaire
Background PaTz (an acronym for ‘PAlliatieve Thuis Zorg’; palliative care at home) is an intervention to improve palliative care provision and strengthen the generalist knowledge of palliative care. In PaTz general practitioners and district nurses meet on a regular basis to identify patients with palliative care needs and to discuss care for these patients. This study explores experiences with regard to collaboration between general practitioners and district nurses, and perceived benefits of and barriers for implementation of PaTz. Methods This study is conducted within the primary care setting. Participants were 24 general practitioners who filled in a questionnaire, and seven general practitioners, five district nurses and two palliative care consultants who attended one of two focus groups. Results PaTz led to improved collaboration. Participants felt informational and emotional support from other PaTz participants. Also they felt that continuity of care was enhanced by PaTz. Practical recommendations for implementation were: meetings every 6 to 8 weeks, regular attendance from both general practitioners and district nurses, presence of a palliative care consultant, and a strong chairman. Conclusions PaTz is successful in enhancing collaboration in primary palliative care and easy to implement. Participants felt it improved continuity of care and knowledge on palliative care. Further research is needed to investigate whether patient and carer outcomes improve. PMID:24444024
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
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.
Bakitas, Marie; Dionne-Odom, J Nicholas; Pamboukian, Salpy V; Tallaj, Jose; Kvale, Elizabeth; Swetz, Keith M; Frost, Jennifer; Wells, Rachel; Azuero, Andres; Keebler, Konda; Akyar, Imatullah; Ejem, Deborah; Steinhauser, Karen; Smith, Tasha; Durant, Raegan; Kono, Alan T
Early palliative care (EPC) is recommended but rarely integrated with advanced heart failure (HF) care. We engaged patients and family caregivers to study the feasibility and site differences in a two-site EPC trial, ENABLE CHF-PC (Educate, Nurture, Advise, Before Life Ends Comprehensive Heartcare for Patients and Caregivers). We conducted an EPC feasibility study (4/1/14-8/31/15) for patients with NYHA Class III/IV HF and their caregivers in academic medical centers in the northeast and southeast U.S. The EPC intervention comprised: 1) an in-person outpatient palliative care consultation; and 2) telephonic nurse coach sessions and monthly calls. We collected patient- and caregiver-reported outcomes of quality of life (QOL), symptom, health, anxiety, and depression at baseline, 12- and 24-weeks. We used linear mixed-models to assess baseline to week 24 longitudinal changes. We enrolled 61 patients and 48 caregivers; between-site demographic differences included age, race, religion, marital, and work status. Most patients (69%) and caregivers (79%) completed all intervention sessions; however, we noted large between-site differences in measurement completion (38% southeast vs. 72% northeast). Patients experienced moderate effect size improvements in QOL, symptoms, physical, and mental health; caregivers experienced moderate effect size improvements in QOL, depression, mental health, and burden. Small-to-moderate effect size improvements were noted in patients' hospital and ICU days and emergency visits. Between-site demographic, attrition, and participant-reported outcomes highlight the importance of intervention pilot-testing in culturally diverse populations. Observations from this pilot feasibility trial allowed us to refine the methodology of an in-progress, full-scale randomized clinical efficacy trial. Clinicaltrials.gov NCT03177447 (retrospectively registered, June 2017).
Defilippi, Kathleen M; Cameron, Sue
This article provides a brief outline of the HIV/AIDS situation in South Africa and the development of the Hospice Palliative Care Association (HPCA) as the background to an exploration of the changing face of palliative care in light of the demands of HIV/AIDS. It describes the South African Palliative Care Mentorship Program, including a description of the Integrated Community-Based Home Care (ICHC) model and its promotion of collaboration with the formal health care sector and other networking partners. The role mentorship played in its application to HPCA member hospices in response to the increasing demands of HIV/AIDS is outlined. The article also focuses on the development of provincial and regional mentorship capacity, the establishment of provincial palliative care development teams, the development of comprehensive palliative care standards, and the link between mentorship and accreditation. The key results of the promotion of the ICHC model and the effects of the mentorship program are highlighted, including possibilities for the expansion of the model beyond its original context in South Africa. The difficult issue of sustainability within an African context is also mentioned. In conclusion, there is a challenge to readers to explore the use of mentorship within their own palliative care settings.
Cheng, Jennifer; Vollenweider, Daniela; Galusca, Dragos; Smith, Thomas J.; Pronovost, Peter J.
Abstract Background: Over the last 20 years, multiple interventions to better integrate palliative care and intensive care unit (ICU) care have been evaluated. This systematic review summarizes these studies and their outcomes. Methods: We searched MEDLINE, Embase, Cumulative Index to Nursing and Allied Health Literature (CINAHL), the Cochrane Library, and the Web of Science; performed a search of articles published by opinion leaders in the field; and reviewed hand-search articles as of August 13, 2012. The terms “palliative care” and “intensive care unit” were mapped to MeSH subject headings and “exploded.” We included trials of adult patients that evaluated an ICU intervention and addressed Robert Wood Johnson group-identified domains of high-quality end-of-life care in the ICU. We excluded case series, editorials, and review articles. We compared two types of interventions, integrative and consultative, focusing on the outcomes of patient and family satisfaction, mortality, and ICU and hospital length of stay (LOS), because these were most prevalent among studies. Results: Our search strategy yielded 3328 references, of which we included 37 publications detailing 30 unique interventions. Interventions and outcome measures were heterogeneous, and many studies were underpowered and/or subject to multiple biases. Most of the interventions resulted in a decrease in hospital and ICU LOS. Few interventions significantly affected satisfaction. With one exception, the interventions decreased or had no effect on mortality. There was no evidence of harm from any intervention. Conclusions: Heterogeneity of interventions made comparison of ICU-based palliative care interventions difficult. However, existing evidence suggests proactive palliative care in the ICU, using either consultative or integrative palliative care interventions, decrease hospital and ICU LOS, do not affect satisfaction, and either decrease or do not affect mortality. PMID:24517300
Jamwal, Nisha Rani; Kumar, Senthil P
Smartphones are technologically advanced mobile phone devices which use software similar to computer-based devices as a user-friendly interface. This review article is aimed to inform the palliative care professionals, cancer patients and their caregivers about the role of smartphone applications (apps) in the delivery of palliative care services, through a brief review of existing literature on the development, feasibility, analysis, and effectiveness of such apps. There is a dearth need for sincere palliative care clinicians to work together with software professionals to develop the suitable smartphone apps in accordance with the family/caregivers’ necessities and patients’ biopsychosocial characteristics that influence the technology driven evidence informed palliative cancer care. PMID:26962291
Intensive care medicine and palliative care medicine were considered for a long time to be contrasting concepts in therapy. While intensive care medicine is directed towards prolonging life and tries to stabilize disordered body functions, palliative care medicine is focused upon the relief of disturbances to help patients in the face of death. Today both views have become congruent. Palliative aspects are equally important in curative therapy. In the course of illness or in respect of the patient's will, the aim of therapy may change from curative to palliative. Two examples are presented to illustrate the ethical challenges in this process. They follow from the medical indication, attention to the patient's will, different opinions in the team, truth at the bedside and from what must be done in the process of withdrawing therapy.
Sakuyama, Toshikazu; Komatsu, Kazuhiro; Inoue, Daisuke; Fukushima, Osamu
In order to support the home palliative care learning, we made the eLearning service for home palliative care (beta version) and tried to teach the palliative care to the medical staffs in the community. The various learners (such as nurses, pharmacists and the like) accessed to the online learning and used this eLearning service. After the learners finished eLearning for home palliative care, some questionnaires were distributed to the learners and analyzed by us. The analysis of questionnaires revealed that almost all were satisfied with our eLearning services. Especially the learners were not only interested in using the skills of opioids and the management of pain control, but they had a good cognition for the usage of opioids.
Wilcox, Sarah K
Patients with Parkinson's disease have an illness which shortens their life and involves a heavy symptom burden for patient and carer. This article discusses some common palliative care issues pertinent to patients with Parkinson's disease.
Mol, Rani P
The palliative doctor gives the 'touch of God' as he/she takes care of the terminally ill patient. The oncologist encounters great difficulties in managing oral cavity problems of these patients. A trained dental doctor can help other doctors in dealing with these situations. But the general dental surgeon does not have enough idea about his part in these treatments. The community is also unaware of the role that a nearby dentist can play. Adequate training programs have to be conducted and awareness has to be created. A trained dentist will be a good team mate for the oncologist or radiotherapist or other doctors of the palliative care team. In this paper, a brief attempt is made to list a few areas in which a palliative care dentist can help other members of the palliative care team and also the patient in leading a better life.
Carter, Brian S
Recent laws in Europe now allow for pediatric euthanasia. The author reviews some rationale for caution, and addresses why ensuring the availability of pediatric palliative care is an important step before allowing pediatric euthanasia.
Patients receiving palliative care experience extreme vulnerability reminding them of the fragility of their human condition. How are they to trust nurses bearing bad news in these crucial moments? Trust is built on team coherence and rigorous support.
Glare, P A
The World Health Organisation estimates that over 1.5 million human immunodeficiency virus (HIV) infections have occurred to date in South and South East Asia. As most of these patients will develop acquired immunodeficiency syndrome (AIDS) in the coming decade, health services in the region face a major challenge in meeting their needs. While treatments are available which prolong the lives of patients with AIDS, most will eventually die of their disease, and attention needs to be given to controlling pain and other symptoms and improving quality of life. Providing palliative care for patients with AIDS raises complex issues not normally encountered in traditional palliative care practice. Based on the author's experience with the Central Sydney Area Palliative Care Service in Sydney, Australia, this paper discusses the problems and practicalities involved in palliative care for adult patients with advanced AIDS, such as clinical decision making, pain and other symptom control, psychosocial issues and terminal care. Representative case histories are described to illustrate how the palliative care physician can start to approach some of the dilemmas created by this demanding yet growing area of palliative care.
Morita, Tatsuya; Fujimoto, Koji; Imura, Chizuru; Nanba, Miki; Fukumoto, Naoko; Itoh, Tomoko
Knowledge and skill deficits about palliative care in medical professionals are among the most common barriers to quality palliative care. This study in a Japanese regional cancer center was conducted to clarify nurses' self-reported practices, confidence, and knowledge, and the changes in these parameters after the 1-year educational and clinical activity of a palliative care team. Questionnaires were distributed to 134 nurses before and after a palliative care team conducted 6-topic educational programs and clinical consultation activity throughout the year. The nurses were asked to report their practices, confidence, and knowledge about palliative care in 5 fields (pain, dyspnea, delirium, communication, and dying-phase). In some areas of palliative care, hospital nurses did not adhere to recommended practices, had knowledge deficits, and were not generally confident with palliative care practices. However, daily palliative care team activities, including educational programs and clinical consultation service, could improve their practice and knowledge levels.
... quality of life. Palliative care is different from hospice care. Palliative care is available to you at any ... include: • Will I have to give up my primary health care provider? • What do I say if ...
Collaborations in palliative care have helped to create a framework and identify preferred practices so the field of palliative care can grow. Teamwork designed in a transdisciplinary style is desired and provides whole-person, sensitive, and comprehensive care. In applying the basic key concepts and evidenced-based knowledge of palliative care, this article details one palliative care department's effort to create change, enhance the delivery of care, and build their palliative care practice. Creating collaborations and building partnerships were fundamental outcomes to improve the palliative care practice, increase transdisciplinary teamwork activities, and enhance the delivery of care in this organization.
Wharton, Tracy; Manu, Erika; Vitale, Caroline A
This article describes a pilot model to increase palliative care (PC) knowledge and collaboration among providers and to systematically identify chronic multimorbid home care patients who would benefit from focused discussion of potential PC needs. Thirty health care providers from a home-based primary care team attended interdisciplinary trainings. The Palliative Performance Scale (PPS) tool was used to trigger discussions of potential palliative needs at team rounds for patients who scored below a cutoff point on the tool. Palliative Performance Scale implementation added little burden on nurses and triggered a discussion in 51 flagged patients. The tool successfully identified 75% of patients who died or were discharged. Screening was systematic and consistent and resulted in targeted discussions about PC needs without generating additional burden on our PC consult service. This model shows promise for enhancing collaborative patient care and access to PC.
Kinoshita, Satomi; Miyashita, Mitsunori; Morita, Tatsuya; Sato, Kazuki; Miyazaki, Tamana; Shoji, Ayaka; Chiba, Yurika; Tsuneto, Satoru; Shima, Yasuo
This study aimed to clarify perspectives of bereaved family members regarding opioids and compare perceptions before admission and after bereavement. A cross-sectional questionnaire survey for bereaved family members in 100 inpatient palliative care units was administered. Participants were 297 bereaved family members of patients who used opioids. Many bereaved family members had misconceptions of opioids before admission. There was improvement after bereavement, but understanding remained low. Respondents less than 65 years old showed significantly greater decreases in misconceptions regarding opioids compared to older generations, after bereavement. Bereaved family members who were misinformed about opioids by physicians were significantly more likely to have misconceptions about opioids. Educational interventions for physicians are needed to ensure that they offer correct information to the general population.
Nair, Shoba; Tarey, SD; Barathi, B; Mary, Thiophin Regina; Mathew, Lovely; Daniel, Sudha Pauline
Background: Palliative care in low and middle-income countries is a new discipline, responding to a greater patient need, than in high-income countries. By its very nature, palliative as a specialty has to network with other specialties to provide quality care to patients. For any medical discipline to grow as a specialty, it should be well established in the teaching medical institutions of that country. Data show that palliative care is more likely to establish and grow in an academic health care institution. It is a necessity that multiple networking strategies are adopted to reach this goal. Objectives: (1) To describe a strategic approach to palliative care service development and integration into clinical academic setting. (2) To present the change in metrics to evaluate progress. Design and Setting: This is a descriptive study wherein, the different strategies that are adopted by the Department of Palliative Medicine for networking in an academic health care institution and outside the institution are scrutinized. Measurement: The impact of this networking was assessed, one, at the level of academics and the other, at the level of service. The number of people who attended various training programs conducted by the department and the number of patients who availed palliative care service over the years were assessed. Results: Ten different strategies were identified that helped with networking of palliative care in the institution. During this time, the referrals to the department increased both for malignant diseases (52–395) and nonmalignant diseases (5–353) from 2000 to 2013. The academic sessions conducted by the department for undergraduates also saw an increase in the number of hours from 6 to 12, apart from the increase in a number of courses conducted by the department for doctors and nurses. Conclusion: Networking is an essential strategy for the establishment of a relatively new medical discipline like palliative care in a developing and
Gelfman, Laura P; Kavalieratos, Dio; Teuteberg, Winifred G; Lala, Anuradha; Goldstein, Nathan E
Heart failure (HF) is a chronic and progressive illness, which affects a growing number of adults, and is associated with a high morbidity and mortality, as well as significant physical and psychological symptom burden on both patients with HF and their families. Palliative care is the multidisciplinary specialty focused on optimizing quality of life and reducing suffering for patients and families facing serious illness, regardless of prognosis. Palliative care can be delivered as (1) specialist palliative care in which a palliative care specialist with subspecialty palliative care training consults or co-manages patients to address palliative needs alongside clinicians who manage the underlying illness or (2) as primary palliative care in which the primary clinician (such as the internist, cardiologist, cardiology nurse, or HF specialist) caring for the patient with HF provides the essential palliative domains. In this paper, we describe the key domains of primary palliative care for patients with HF and offer some specific ways in which primary palliative care and specialist palliative care can be offered in this population. Although there is little research on HF primary palliative care, primary palliative care in HF offers a key opportunity to ensure that this population receives high-quality palliative care in spite of the growing numbers of patients with HF as well as the limited number of specialist palliative care providers.
There has been much written to support music therapy as an adjunct in managing pain and anxiety in palliative care patients in Western societies, but little written on its use in developing countries. In light of increasing numbers of terminally ill patients in Tanzania owing to HIV/AIDS and cancer, limited access to opioids, and a growing interest in palliative care support, this study looks at the application of music in this context. The study reviews the history and principles of therapeutic music and outlines its role in palliative care. A qualitative study was conducted by questionnaire of 17 professionals involved in home-based palliative care in Tanzania. Findings include beliefs about the power of music, how music is being used to bring comfort to the dying patient, and the most important aspects of helpful music to many Tanzanian palliative care patients. Music can powerfully affect body, mind and spirit. It is vocal music, which is an accepted therapeutic music tool used to bring comfort to the palliative care patient and their family members. Finally, music is an active and participatory activity in Tanzanian culture, even for the dying.
McCaffrey, Nikki; Agar, Meera; Harlum, Janeane; Karnon, Jonathon; Currow, David; Eckermann, Simon
The aim of this study was to evaluate the cost-effectiveness of a home-based palliative care model relative to usual care in expediting discharge or enabling patients to remain at home. Economic evaluation of a pilot randomised controlled trial with 28 days follow-up. Mean costs and effectiveness were calculated for the Palliative Care Extended Packages at Home (PEACH) and usual care arms including: days at home; place of death; PEACH intervention costs; specialist palliative care service use; acute hospital and palliative care unit inpatient stays; and outpatient visits. PEACH mean intervention costs per patient ($3489) were largely offset by lower mean inpatient care costs ($2450) and in this arm, participants were at home for one additional day on average. Consequently, PEACH is cost-effective relative to usual care when the threshold value for one extra day at home exceeds $1068, or $2547 if only within-study days of hospital admission are costed. All estimates are high uncertainty. The results of this small pilot study point to the potential of PEACH as a cost-effective end-of-life care model relative to usual care. Findings support the feasibility of conducting a definitive, fully powered study with longer follow-up and comprehensive economic evaluation.
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
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
Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo
The complexity of end-of-life care, represented by a large number of units caring for dying patients, of different types of organizations motivates the importance of measure the quality of provided care. Despite the law 38/2010 promulgated to remove the barriers and provide affordable access to palliative care, measurement, and monitoring of processes of home care providers in Italy has not been attempted. Using data drawn by an institutional voluntary observatory established in Italy in 2013, collecting home palliative care units caring for people between January and December 2013, we assess the degree to which Italian home palliative care teams endorse a set of standards required by the 38/2010 law and best practices as emerged from the literature. The evaluation strategy is based on Rasch analysis, allowing to objectively measuring both performances of facilities and quality indicators' difficulty on the same metric, using 14 quality indicators identified by the observatory's steering committee. Globally, 195 home care teams were registered in the observatory reporting globally 40 955 cured patients in 2013 representing 66% of the population of home palliative care units active in Italy in 2013. Rasch analysis identifies 5 indicators ("interview" with caregivers, continuous training provided to medical and nursing staff, provision of specialized multidisciplinary interventions, psychological support to the patient and family, and drug supply at home) easy to endorse by health care providers and 3 problematic indicators (presence of a formally established Local Network of Palliative care in the area of reference, provision of the care for most problematic patient requiring high intensity of the care, and the percentage of cancer patient dying at Home). The lack of Local Network of Palliative care, required by law 38/2010, is, at the present, the main barrier to its application. However, the adopted methodology suggests that a clear roadmap for health facilities
Schultz, Michael; Baddarni, Kassim; Bar-Sela, Gil
Spiritual care is a vital part of holistic patient care. Awareness of common patient beliefs will facilitate discussions about spirituality. Such conversations are inherently good for the patient, deepen the caring staff-patient-family relationship, and enhance understanding of how beliefs influence care decisions. All healthcare providers are likely to encounter Muslim patients, yet many lack basic knowledge of the Muslim faith and of the applications of Islamic teachings to palliative care. Similarly, some of the concepts underlying positive Jewish approaches to palliative care are not well known. We outline Jewish and Islamic attitudes toward suffering, treatment, and the end of life. We discuss our religions' approaches to treatments deemed unnecessary by medical staff, and consider some of the cultural reasons that patients and family members might object to palliative care, concluding with specific suggestions for the medical team. PMID:22203878
Holden, J D
To document the delivery and outcome of palliative care in one practice. All appropriate deaths were documented over the period of the study. One general practice of four doctors caring for 8000 patients in the North-West of England. All patients dying of malignant disease which had included a palliative phase of at least one week. Place of death; continuity of care; general practitioners' assessment of symptom relief; follow-up of bereaved relatives. 118 deaths from terminal malignant disease were recorded over eight years in my practice. 75% were being cared for by us (GPs) at the time of death. More detailed information was recorded on 64 of these patients showing generally "satisfactory" care. A simple audit can help maintain high standards of palliative care. General practitioners are encouraged to maintain registers of the care received by terminally-ill patients as an aid to quality assurance in this area.
Barawid, Edward; Covarrubias, Natalia; Tribuzio, Bianca; Liao, Solomon
Palliative care requires an interdisciplinary team approach to provide the best care for patients with life-threatening illnesses. Like palliative medicine, rehabilitation also uses an interdisciplinary approach to treating patients with chronic illnesses. This review article focuses on rehabilitation interventions that can be beneficial in patients with late stage illnesses. Rehabilitation may be useful in improving the quality of life by palliating function, mobility, activities of daily living, pain relief, endurance, and the psyche of a patient while helping to maintain as much independence as possible, leading to a decrease in burden on caregivers and family. Rehabilitative services are underutilized in the palliative care setting, and more research is needed to address how patients may benefit as they approach the end of their lives.
Dwyer, Justin; Taylor, Keryn; Boughey, Mark
Patients who articulate their psychological distress primarily through physical symptoms (referred to as medically unexplained symptoms (MUS)) pose a challenge to the skills of most clinicians, including palliative care physicians. The philosophical underpinnings of palliative care with a stated focus on symptom management and care of the person in their psychosociospiritual context lend itself to the care of these patients. The aim of this study was to investigate the characteristics to improve identification of this patient group within palliative care. Here, we report a case series of 6 patients with severe MUS who were referred to palliative care. We use illustrative case vignettes, examine clinical and demographic characteristics and review the perspectives of the multidisciplinary team to identify the common threads. This case series highlights the complexities and challenges that are inherent in providing assessment and care for patients with MUS that present to palliative care. Characteristics that were identified included the clustering of 'trigger' symptoms, backgrounds of multiple chronic illnesses and relationship dysfunction. Patient outcomes in this group were universally poor, including the death of 2 patients. Knowledge of this patient group is vital given the likely increase in prevalence of MUS as palliative care broadens its focus earlier in the trajectory of illness. The strengths of palliative care, including psychosociospiritual assessment, multidisciplinary input and communication skills holds the potential to accurately identify patients with MUS and allow the opportunity for specialist psychiatric input with the hope of improving outcomes for patients and their families. 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/.
Smith, Cardinale B; Phillips, Tanyanika; Smith, Thomas J
Palliative care alongside usual oncology care is now recommended by ASCO as the standard of care for any patient with advanced cancer on the basis of multiple randomized trials that show better results with concurrent care than with usual oncology care. Some benefits include better quality of life, better symptom management, reduced anxiety and depression, less caregiver distress, more accordance of care with the wishes of the patient, and less aggressive end-of-life care. Several studies show a survival advantage of several months, and many show considerable cost savings: better care at an affordable cost. However, there are not enough palliative care specialists available, so oncologists must practice exemplary primary palliative care. Protocols used in the clinical trials, similar to those designed for new chemotherapy agents, help oncologists use the TEAM approach of extra time, typically an hour a month spent with the palliative care team; education, especially about prognostic awareness and realistic options, which include formal setting of goals of care and discussion of advance directives; formal assessments for symptoms and for spiritual and psychosocial health; and management by an interdisciplinary team. These are all potentially accomplished by an oncology practice to replicate the services provided by concurrent palliative care.
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
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/.
Scherer, Jennifer S; Wright, Rebecca; Blaum, Caroline S; Wall, Stephen P
A diagnosis of advanced chronic kidney disease (CKD), or end stage renal disease (ESRD) represents a significant life change for patients and families. Individuals often experience high symptom burden, decreased quality of life, increased health care utilization, and end-of-life care discordant with their preferences. Early integration of palliative care with standard nephrology practice in the outpatient setting has the potential to improve quality of life through provision of expert symptom management, emotional support, and facilitation of advance care planning that honors the individual's values and goals. This special report describes application of participatory action research (PAR) methods to develop an outpatient integrated nephrology and palliative care program. Stakeholder concerns were thematically analyzed to inform translation of a known successful model of outpatient kidney palliative care to a practice in a large, urban medical center in the United States. Stakeholder needs and challenges to meeting these needs were identified. We uncovered a shared understanding of the clinical need for palliative care services in nephrology practice, but apprehension towards practice change. Action steps to modify the base model were created in response to stakeholder feedback. The development of a model of care that provides a new approach to clinical practice requires attention to relevant stakeholder concerns. PAR is a useful methodological approach that engages stakeholders and builds partnerships. This creation of shared ownership can facilitate innovation and practice change. We synthesized stakeholder concerns to build a conceptual model for an integrated nephrology and palliative care clinical program. Copyright © 2017. Published by Elsevier Inc.
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
Friedrichsdorf, Stefan J; Kohen, Daniel P
At least 8 million children would need specialized pediatric palliative care (PPC) services annually worldwide, and of the more than 42,000 children and teenagers dying annually in the United States, at least 15,000 children would require PPC. Unfortunately, even in resource-rich countries the majority of children dying from serious advanced illnesses are suffering from unrelieved, distressing symptoms such as pain, dyspnea, nausea, vomiting, and anxiety. State of the art treatment and prevention of those symptoms requires employing multi-modal therapies, commonly including pharmacology, rehabilitation, procedural intervention, psychology, and integrative modalities. This article describes the current practice of integrating hypnosis into advanced pain and symptom management of children with serious illness. Three case reports of children living with a life-limiting condition exemplify the effective use of this clinical modality to decrease distressing symptoms and suffering. Hypnosis for pediatric patients experiencing a life-limiting disease not only provides an integral part of advanced symptom management, but also supports children dealing with loss and anticipatory loss, sustains and enhances hope and helps children and adolescents live fully, making every moment count, until death.
Fitch, Margaret I.; DasGupta, Tracey; Ford, Bill
Caring for individuals at the end of life in the hospital environment is a challenging proposition. Understanding the challenges to provide quality end of life care is an important first step in order to develop appropriate approaches to support and educate staff members and facilitate their capacity remaining “caring.” Four studies were undertaken at our facility to increase our understanding about the challenges health professionals experience in caring for patients at end of life and how staff members could be supported in providing care to patients and families: (1) In-depth interviews were used with cancer nurses (n = 30) to explore the challenges talking about death and dying with patients and families; (2) Surveys were used with nurses (n = 27) and radiation therapists (n = 30) to measure quality of work life; (3) and interprofessional focus groups were used to explore what it means “to care” (five groups held); and (4) interprofessional focus groups were held to understand what “support strategies for staff” ought to look like (six groups held). In all cases, staff members confirmed that interactions concerning death and dying are challenging. Lack of preparation (knowledge and skill in palliative care) and lack of support from managers and colleagues are significant barriers. Key strategies staff members thought would be helpful included: (1) Ensuring all team members were communicating and following the same plan of care, (2) providing skill-based education on palliative care, and (3) facilitating “debriefing” opportunities (either one-on-one or in a group). For staff to be able to continue caring for patients at the end of life with compassion and sensitivity, they need to be adequately prepared and supported appropriately. PMID:27981141
Woitha, Kathrin; Van Beek, Karen; Ahmed, Nisar; Jaspers, Birgit; Mollard, Jean M; Ahmedzai, Sam H; Hasselaar, Jeroen; Menten, Johan; Vissers, Kris; Engels, Yvonne
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.
Integrating palliative care in the surgical and trauma intensive care unit: A report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care
Mosenthal, Anne C.; Weissman, David E.; Curtis, J. Randall; Hays, Ross M.; Lustbader, Dana R.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Bassett, Rick; Boss, Renee D.; Brasel, Karen J.; Campbell, Margaret; Nelson, Judith E.
Objective Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. Data Sources We searched the MEDLINE database from inception to May 2011 for all English language articles using the term “surgical palliative care” or the terms “surgical critical care,” “surgical ICU,” “surgeon,” “trauma” or “transplant,” and “palliative care” or “end-of- life care” and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. Data Extraction and Synthesis We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. Conclusions Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. “Consultative,” “integrative,” and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to
Liberman, D B; Song, E; Radbill, L M; Pham, P K; Derrington, S F
Children with complex chronic medical conditions benefit from early introduction of palliative care services and advanced care planning for symptom management and to support quality of life and medical decision-making. This study evaluated whether introducing palliative care during primary care appointments (1) was feasible; (2) increased access and improved knowledge of palliative care; and (3) facilitated advanced care planning. Pilot study of a multi-modal intervention including targeted education for primary care providers (PCPs), an informational packet for families and presence of a palliative care team member in the outpatient clinic. PCPs completed pre- and post-surveys assessing experience, knowledge and comfort with palliative care. Enrolled families received an information packet; a subset also met a palliative care team member. All families were encouraged to make an appointment with the palliative care team, during which the team assessed palliative care needs and goals of care. Upon study completion, the investigators assessed family and PCP satisfaction and collected feedback on project feasibility. Twenty families were enrolled and received the information packet; 15 met a palliative care team member. Of the 17 participating families who were reached and completed a post-study survey, 11 families had never heard of palliative care and 13 were unaware that the palliative care team existed. Most families perceived palliative care information as 'very helpful' and 'very important'. All would recommend palliative care team services to others. Nine families followed up with the palliative care team, but none was prepared to complete an advanced care plan. PCPs reported lack of training in communicating bad news and conducting goals of care discussions. However, they felt increasingly comfortable introducing palliative care to families and supported program continuation. Initiating palliative care services in the outpatient primary care setting is
Mertnoff, Rosa; Vindrola-Padros, Cecilia; Jacobs, Mariana; Gómez-Batiste, Xavier
The Latin American Association for Palliative Care (ALCP) developed 10 indicators to monitor the development of palliative care. The indicators have been applied across Latin American countries but have not been used internally. The aims of this study were to document the development of palliative care in Argentina at the national and provincial levels by using a selection of the indicators developed by the ALCP and identify the difficulties and needs of healthcare professionals working in palliative care. This is the first study to apply the indicators intranationally. This was a cross-sectional pilot study based on two questionnaires with representatives from each province, one workshop, and telephone conversations to corroborate the collected data. These data were used to calculate a preselection of eight ALCP indicators covering four main areas of development: education, policy, service delivery, and medication. A total of 30 participants took part in the study. The application of the ALCP indicators at the province level led to the identification of inequalities in the development and distribution of services across the country. The provinces in the north-west were identified as the region with the greatest need for development. The main difficulties for healthcare professionals were lack of national service registries, certified palliative care specialties, and opportunities for continuous training. The ALCP indicators are useful tools for mapping palliative care development within countries. Further work needs to be carried out to increase their specificity and integrate them in policy design and service delivery.
Robinson, L; Stacy, R
BACKGROUND. Previous studies have demonstrated deficiencies in palliative care in the community. One method of translating the results of research into clinical practice, in order to produce more effective health care, is the development of clinical guidelines. Setting standards for such care has been performed by care teams in both hospital and hospice settings but not in primary care. AIM. This study set out to develop guidelines for primary care teams to follow in the provision of palliative care in the community using facilitated case discussions with the members of such teams, as a form of internal audit. METHOD. Five practices were randomly chosen from the family health services authority medical list. Meetings between the facilitators and primary care teams were held over a period of one year. The teams were asked to describe good aspects of care, areas of concern and suggestions to improve these, in recent cases of patient deaths. RESULTS. In total 56 cases were discussed. All practices felt that cohesive teamwork, coordinated management, early involvement of nursing staff and the identification of a key worker were essential for good terminal care. Concerns arose in clinical and administrative areas but the majority were linked to poor communication, either between patient and professionals within the primary care team or between primary and secondary care. All the positive aspects of care, concerns and suggestions were collated by the facilitators into guidelines for teams to refer to from the initial diagnosis of a terminal illness through to the patient's death and care of the relatives afterwards. CONCLUSION. Developing multidisciplinary as opposed to medical guidelines for palliative care allows primary health care teams to create standards that are acceptable to them and stimulates individuals within the teams to accept responsibility for initiating the change necessary for more effective care. The process of facilitating teams to discuss their work
Cherlin, Emily J; Brewster, Amanda L; Curry, Leslie A; Canavan, Maureen E; Hurzeler, Rosemary; Bradley, Elizabeth H
Despite evidence that enrollment with hospice services has the potential to reduce hospital readmission rates, previous research has not examined exactly how hospitals may promote the appropriate use of hospice and palliative care for their discharged patients. Therefore, we sought to explore the strategies used by hospitals to increase the use of hospice and palliative care for patients at risk of readmission. We conducted a secondary analysis of qualitative data from a study of hospitals that were participating in the State Action on Avoidable Readmissions (STAAR) initiative, a quality improvement collaborative. We used data attained from 46 in-depth interviews conducted during 10 hospital site visits using a standard discussion guide and protocol. We used a grounded theory approach using the constant comparative method to generate recurrent and unifying themes. We found that a positive effect for hospitals participating in the STAAR initiative was enhanced engagement in efforts to promote greater use of hospice and palliative care as a possible method of reducing unplanned readmissions, the central goal of the STAAR initiative. Hospital staff described strategies to increase the use of hospice and palliative care that included (1) designing and implementing tracking systems to identify patients most at risk of being readmitted, (2) providing education about hospice and palliative care to family, internal and external clinical groups, and (3) establishing closer links to posthospital settings. National efforts to reduce rehospitalizations may result in improved integration of hospice and palliative care for patients who are at risk of readmission.
Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix
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
Burbeck, Rachel; Low, Joe; Sampson, Elizabeth L.; Bravery, Ruth; Hill, Matthew; Morris, Sara; Ockenden, Nick; Payne, Sheila
Abstract Background: Worldwide, the demand for specialist palliative care is increasing but funding is limited. The role of volunteers is underresearched, although their contribution reduces costs significantly. Understanding what volunteers do is vital to ensure services develop appropriately to meet the challenges faced by providers of palliative care. Objective: The study's objective is to describe current involvement of volunteers with direct patient/family contact in U.K. specialist palliative care. Design: An online survey was sent to 290 U.K. adult hospices and specialist palliative care services involving volunteers covering service characteristics, involvement and numbers of volunteers, settings in which they are involved, extent of involvement in care services, specific activities undertaken in each setting, and use of professional skills. Results: The survey had a 67% response rate. Volunteers were most commonly involved in day care and bereavement services. They entirely ran some complementary therapy, beauty therapy/hairdressing, and pastoral/faith-based care services, and were involved in a wide range of activities, including sitting with dying patients. Conclusions: This comprehensive survey of volunteer activity in U.K. specialist palliative care provides an up-to-date picture of volunteer involvement in direct contact with patients and their families, such as providing emotional care, and the extent of their involvement in day and bereavement services. Further research could focus on exploring their involvement in bereavement care. PMID:24475743
Gatrad, A R; Sheikh, A
National and European directives have now enshrined within European law the requirement that healthcare professionals provide their patients with culturally appropriate and sensitive care. Although well intentioned, many health professionals find it difficult to translate these directives into practice. Barriers to providing culturally competent care include racism, institutional discrimination and gaps in our understanding of the interface between culture and health--this latter factor reflecting the lack of training in transcultural health care. In this paper, we concentrate on issues relating to the provision of palliative care near death to Muslims of South Asian origin in the UK, although much of what is said will equally be applicable to Muslims from other parts of the world. This is the first of two articles giving insights into the palliative care of Muslims. The second article 'Palliative care of Muslims and issues after death' will appear in a later issue.
Broom, Alex; Kirby, Emma; Good, Phillip; Wootton, Julia; Yates, Patsy; Hardy, Janet
Nurses play a pivotal role in caring for patients during the transition from life-prolonging care to palliative care. This is an area of nursing prone to emotional difficulty, interpersonal complexity, and interprofessional conflict. It is situated within complex social dynamics, including those related to establishing and accepting futility and reconciling the desire to maintain hope. Here, drawing on interviews with 20 Australian nurses, we unpack their accounts of nursing the transition to palliative care, focusing on the purpose of nursing at the point of transition; accounts of communication and strategies for representing palliative care; emotional engagement and burden; and key interprofessional challenges. We argue that in caring for patients approaching the end of life, nurses occupy precarious interpersonal and interprofessional spaces that involve a negotiated order around sentimental work, providing them with both capital (privileged access) and burden (emotional suffering) within their day-to-day work.
Jubb, A M
Good medical practice requires evidence of effectiveness to address deficits in care, strive for further improvements, and justly apportion finite resources. Nevertheless, the potential of palliative care is still held back by a paucity of good evidence. These circumstances are largely attributable to perceived ethical challenges that allegedly distinguish dying patients as a special client class. In addition, practical limitations compromise the quality of evidence that can be obtained from empirical research on terminally ill subjects. This critique aims to appraise the need for focused research, in order to develop clinical and policy decisions that will guide health care professionals in their care of dying patients. Weighted against this need are tenets that value the practical and ethical challenges of palliative care research as unique and insurmountable. The review concludes that, provided investigators compassionately apply ethical principles to their work, there is no justification for not endeavouring to improve the quality of palliative care through research.
Boss, Renee D
Extremely premature infants face multiple acute and chronic life-threatening conditions. In addition, the treatments to ameliorate or cure these conditions often entail pain and discomfort. Integrating palliative care from the moment that extremely premature labor is diagnosed offers families and clinicians support through the process of defining goals of care and making decisions about life support. For both the extremely premature infant who dies soon after birth and the extremely premature infant who experiences multiple complications over weeks and months in the neonatal intensive care unit, palliative care can maintain a focus on infant comfort and family support. This article highlights the ways in which palliative care can be incorporated into intensive care for all critically ill infants.
Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B
We present a case of a patient diagnosed with glioblastoma multiforme refractory to treatment. Glioblastoma multiforme is the most common primary brain tumour and unfortunately the most aggressive, with an estimated mortality of about 90% in the first year after diagnosis. In our case the patient had reached a stage of life where quality of life was importsnt, with palliative care being the only recourse. The family is the mainstay in the provision of care of terminally ill patients, and without their active participation it would be difficult to achieve the objectives in patient care. We must also consider the family of the terminally ill in our care aim, as its members will experience a series of changes that will affect multiple areas where we should take action. Copyright © 2012 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España. All rights reserved.
Weeks, Lori E; Macquarrie, Colleen; Bryanton, Olive
In this research, we endeavoured to gain a clearer understanding of what impact hospice palliative care (HPC) volunteers have on family caregivers and the underlying factors that contribute to this. We conducted ten face-to-face interviews with bereaved women who had previously provided care for their spouses and who used HPC volunteers. We checked our interpretation through a feedback focus group. Using a methodological hermeneutic approach, we came to understand the unique position HPC volunteers occupy within the formal health care system. Our constitutive organizing theme was manifest throughout the women's stories in seven thematic areas that explicate the dimensions of the overarching theme: the Unique Care Link. We identified seven themes that exemplify specific ways in which HPC volunteers have a positive impact on the lives of spousal caregivers. This knowledge can be incorporated into the further development of training and support programs for HPC volunteers, and to increase the quality of volunteer HPC services provided to family members.
On July 20, 2015, the federal Centers for Medicare & Medicaid Services (CMS) announced hospices that have been selected to participate in the Medicare Care Choices Model. Fewer than half of the Medicare beneficiaries use hospice care for which they are eligible. Current Medicare regulations preclude concurrent palliative and curative care. Under the Medicare Choices Model, dually eligible Medicare beneficiaries may elect to receive supportive care services typically provided by hospice while continuing to receive curative services. This report describes how CMS has expanded the model from an originally anticipated 30 Medicare-certified hospices to over 140 Medicare-certified hospices and extended the duration of the model from 3 to 5 years. Medicare-certified hospice programs that will participate in the model are listed.
Busolo, David S; Woodgate, Roberta L
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
Nyirő, Judit; Hauser, Péter; Zörgő, Szilvia; Hegedűs, Katalin
Adequate communication by medical personnel is especially important at certain points during the treatment of childhood cancer patients. To investigate the timing and manner of communication with parents concerning the introduction of palliative care in pediatric oncology. Structured interviews, containing 14 questions, were carried out with physicians working in pediatric oncology (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Interviews show a tendency of a one-step transition to palliative care following curative therapy. Another expert is usually involved in communication, most likely a psychologist. Regarding communication, there are expressions utilized or avoided, such as expressing clarity, self-defense and empathy. The communication of death and dying was the most contradictory. This was the first investigation regarding communication in pediatric palliative care in Hungary. Our results show that a modern perspective of palliative communication is present, but necessitates more time to become entrenched. Orv Hetil. 2017; 158(30): 1175-1181.
Bassah, Nahyeni; Cox, Karen; Seymour, Jane
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
Davidson, Patricia M; Introna, Kate; Cockburn, Jill; Daly, John; Dunford, Mary; Paull, Glenn; Dracup, Kathleen
Advances in the practice of medicine and nursing science have increased survival for patients with chronic cardiorespiratory disease. Parallel to this positive outcome is a societal expectation of longevity and cure of disease. Chronic disease and the inevitability of death creates a dilemma, more than ever before, for the health care professional, who is committed to the delivery of quality care to patients and their families. The appropriate time for broaching the issue of dying and determining when palliative care is required is problematic. Dilemmas occur with a perceived dissonance between acute and palliative care and difficulties in determining prognosis. Palliative care must be integrated within the health care continuum, rather than being a discrete entity at the end of life, in order to achieve optimal patient outcomes. Anecdotally, acute and critical care nurses experience frustration from the tensions that arise between acute and palliative care philosophies. Many clinicians are concerned that patients are denied a good death and yet the moment when care should be oriented toward palliation rather than aggressive management is usually unclear. Clearly this has implications for the type and quality of care that patients receive. This paper provides a review of the extant literature and identifies issues in the end of life care for patients with chronic cardiorespiratory diseases within acute and critical care environments. Issues for refinement of acute and critical care nursing practice and research priorities are identified to create a synergy between these philosophical perspectives.
The 9th annual Palliative Care Congress, organised by the Palliative Care Research Society and the Association of Palliative Medicine, took place in Gateshead, England, on 14-16 March at the impressive The Sage Gateshead on the bank of the river Tyne. Proceedings got under way in dramatic fashion with a production of the Nell Dunne play Home Death, which International Journal of Palliative Nursing part-sponsored. The play was well received by the early comers to the Congress, as evidenced by the comment that it was interesting to experience the very familiar event of a patient's death from the unfamiliar perspective of the person's relatives. This refreshingly alternative start to the Congress continued into the official opening next morning, with a vibrant and humorous performance from the Newcastle Sword Dancers that no doubt helped to cast off the last traces of sleep for many a delegate.
Kamal, Arif H; Currow, David C; Ritchie, Christine S; Bull, Janet; Abernethy, Amy P
Palliative care in the U.S. has evolved from a system primarily reliant on community-based hospices to a combined model that includes inpatient services at most large hospitals. However, these two dominant approaches leave most patients needing palliative care-those at home (including nursing homes) but not yet ready for hospice-unable to access the positive impacts of the palliative care approach. We propose a community-based palliative care (CPC) model that spans the array of inpatient and outpatient settings in which palliative care is provided and links seamlessly to inpatient care; likewise, it would span the full trajectory of advanced illness rather than focusing on the period just before death. Examples of CPC programs are developing organically across the U.S. As our understanding of CPC expands, standardization is needed to ensure replicability, consistency, and the ability to relate intervention models to outcomes. A growing body of literature examining outpatient palliative care supports the role of CPC in improving outcomes, including reduction in symptom burden, improved quality of life, increased survival, better satisfaction with care, and reduced health care resource utilization. Furthermore the examination of how to operationalize CPC is needed before widespread implementation can be realized. This article describes the key characteristics of CPC, highlighting its role in longitudinal care across patient transitions. Distinguishing features include consistent care across the disease trajectory independent of diagnosis and prognosis; inclusion of inpatient, outpatient, long-term care, and at-home care delivery; collaboration with other medical disciplines, nursing, and allied health; and full integration into the health care system (rather than parallel delivery).
White, B P; Willmott, L; Ashby, M
Care and decision-making at the end of life that promotes comfort and dignity is widely endorsed by public policy and the law. In ethical analysis of palliative care interventions that are argued potentially to hasten death, these may be deemed to be ethically permissible by the application of the doctrine of double effect, if the doctor's intention is to relieve pain and not cause death. In part because of the significance of ethics in the development of law in the medical sphere, this doctrine is also likely to be recognized as part of Australia's common law, although hitherto there have been no cases concerning palliative care brought before a court in Australia to test this. Three Australian States have, nonetheless, created legislative defences that are different from the common law with the intent of clarifying the law, promoting palliative care, and distinguishing it from euthanasia. However, these defences have the potential to provide less protection for doctors administering palliative care. In addition to requiring a doctor to have an appropriate intent, the defences insist on adherence to particular medical practice standards and perhaps require patient consent. Doctors providing end-of-life care in these States need to be aware of these legislative changes. Acting in accordance with the common law doctrine of double effect may not provide legal protection. Similar changes are likely to occur in other States and Territories as there is a trend towards enacting legislative defences that deal with the provision of palliative care.
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
Though 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 front-line 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. Published by Elsevier Inc.
Sweet, Lisa; Adamis, Dimitrios; Meagher, David; Davis, Daniel; Currow, David; Bush, Shirley H.; Barnes, Christopher; Hartwick, Michael; Agar, Meera; Simon, Jessica; Breitbart, William; MacDonald, Neil; Lawlor, Peter G.
Context Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. Objectives Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. Methods Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. Results Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. Conclusion Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC. PMID:24388124
Downing, Julia; Leng, Mhoira; Grant, Liz
Global oncology and palliative care needs are increasing faster than the available capacity to meet these needs. This is particularly marked in sub-Saharan Africa, where healthcare capacity and systems are limited and resources are stretched. Uganda, a country of 35.6 million people in eastern Africa, faces the challenges of a high burden of communicable disease and a rising number of cases of non-communicable disease, including cancer. The vast majority of patients in Uganda are diagnosed with cancer too late for curative treatment to be an option because of factors like poor access to healthcare facilities, a lack of health education, poverty, and delays resulting from seeking local herbal or other traditional remedies. This article describes an innovative model of nurse leadership training in Uganda to improve the delivery of palliative care. The authors believe this model can be applicable to other low- and middle-income countries, where health resources are constrained and care needs are great. .
Wilkins, Megan L; Dallas, Ronald H; Fanone, Kathleen E; Lyon, Maureen E
Improvement in treatment has led to decreased death in youth with human immunodeficiency virus (HIV) in developed countries. Despite this, youth with HIV are still at risk for increased mortality and morbidity compared with their uninfected counterparts. In developing countries, high numbers of youth die from acquired immune deficiency syndrome (AIDS)-related illnesses due to lack of access to consistent antiretroviral treatment. As a result, pediatric palliative care is a relevant topic for those providing care to youth with HIV. A systematic review was conducted to gather information regarding the status of the literature related to pediatric palliative care and medical decision-making for youth with HIV. The relevant literature published between January 2002 and June 2012 was identified through searches conducted using PubMed, CINAHL, Scopus, and PSYCInfo databases and a series of key words. Articles were reviewed by thematic analysis using the pillars of palliative care set out by the National Consensus Project. Twenty-one articles were retained after review and are summarized by theme. In general, few empirically based studies evaluating palliative care and medical decision-making in youth with HIV were identified. Articles identified focused primarily on physical aspects of care, with less attention paid to psychological, social, ethical, and cultural aspects of care. We recommend that future research focuses on broadening the evaluation of pediatric palliative care among youth with HIV by directly evaluating the psychological, social, ethical, and cultural aspects of care and investigating the needs of all involved stakeholders.
Bosma, Harvey; Johnston, Meaghen; Cadell, Susan; Wainwright, Wendy; Abernethy, Ngaire; Feron, Andrew; Kelley, Mary Lou; Nelson, Fred
Social workers play an important role in the delivery of Hospice Palliative Care in many diverse settings. The profession brings a unique perspective to end-of-life care that reflects and supports the holistic philosophy of Hospice Palliative Care. Despite the prominent and longstanding position of social work in this area, the role and functions of social workers had not been clearly defined. A Canadian task group of social work practitioners and educators utilized a modified Delphi process to consult front line clinicians nationally, and thereby achieved consensus regarding the identification and description of eleven core competencies in Hospice Palliative Care. These competencies are relevant for social workers at different experience levels across care settings. They can be used to inform social work practice, as well as professional development and educational curricula in this area.
Brennan, Caitlin W; Kelly, Brittany; Skarf, Lara Michal; Tellem, Rotem; Dunn, Kathleen M; Poswolsky, Sheila
Increasing demands on palliative care teams point to the need for continuous improvement to ensure teams are working collaboratively and efficiently. This quality improvement initiative focused on improving interprofessional team meeting efficiency and subsequently patient care. Meeting start and end times improved from a mean of approximately 9 and 6 minutes late in the baseline period, respectively, to a mean of 4.4 minutes late (start time) and ending early in our sustainability phase. Mean team satisfaction improved from 2.4 to 4.5 on a 5-point Likert-type scale. The improvement initiative clarified communication about patients' plans of care, thus positively impacting team members' ability to articulate goals to other professionals, patients, and families. We propose several recommendations in the form of a team meeting "toolkit."
Laskus, Z; Szutkowski, Z
We present results of palliative radiotherapy in 76 oropharyngeal advanced cancer patients. We recommend, according to appreciated results of palliative treatment, the two high fractionation dose courses (so called split course) if the first application of high fractionation dose had resulted in partial remission. Conventional fractionation dose in the second part of split course of radiotherapy did not result in better effect in regression, better subjective feeling after radiotherapy and longer survival time in our material. Patients with poor presentation status (Zubrod 3) should be excluded from palliative radiotherapy.
Hoell, Jessica I; Warfsmann, Jens; Gagnon, Gabriele; Trocan, Laura; Balzer, Stefan; Oommen, Prasad T; Borkhardt, Arndt; Janßen, Gisela; Kuhlen, Michaela
The number of children without a diagnosis in pediatric palliative home care and the process of decision-making in these children are widely unknown. The study was conducted as single-center retrospective cohort study. Between January 2013 and September 2016, 198 children and young adults were cared for; 27 (13.6%) of these were without a clear diagnosis at the start of pediatric palliative home care. A definite diagnosis was ultimately achieved in three children. Median age was 7 years (0-25), duration of care 569 days (2-2638), and number of home visits 7.5 (2-46). Most patients are still alive (19; 70.4%). Median number of drugs administered was eight (range 2-19); antiepileptics were given most frequently. Despite the lack of a clear diagnosis (and thus prognosis), 13 (48.1%) parents faced with their critically ill and clinically deteriorating children decided in favor of a DNAR order. Comparing this with 15 brain-injured children, signs, symptoms, and supportive needs were similar in both groups. Children without a clear diagnosis are relatively common in pediatric palliative care and have-like all other patients-the right to receive optimized and symptom-adapted palliative care. Parents are less likely to choose treatment limitation for children who lack a definitive diagnosis. What is Known: • A clear diagnosis is usually considered important for best-practice pediatric palliative care (PPC) including advanced care planning (ACP). • Timely initiation of pediatric palliative care (PPC) is highly recommended in children with life-limiting conditions. What is New: • SWAN (syndrome without a name) children show similar signs and symptoms (mostly neurological) and have similar supportive needs as brain-injured children. • Defining treatment limitations in advance care planning is more difficult for parents of SWAN compared to brain-injured children.
Erel, Meira; Marcus, Esther-Lee; Dekeyser-Ganz, Freda
People with dementia often fail to receive palliative care, despite increased recognition of their need and eligibility for such care. The aims of this study were to assess the barriers associated with a lack of implementation of palliative care for people with dementia and to explore whether there is a gap in knowledge necessitating further study. We reviewed the English literature published from 2000 to 2016, related to barriers to palliative care for people with dementia. Twenty-two articles met inclusion criteria for the review. Most originated in Europe or North America and were qualitative in nature. Four key themes were identified: administrative/policy issues, education, communication, and staff personal characteristics. Barriers to the delivery of palliative care for people with dementia have been studied for more than a decade, yet at present, there is a lack of consensus in practice. More research is needed related to barriers associated with personal characteristics. Such investigations have the potential to improve and better understand the complex nature of palliative care in this population.
Al-Shahri, Mohammad Zafir
It is well established that provision of palliative care is a human right for the patients and their families going through the suffering associated with a life-threatening illness. The holistic nature of palliative care, dictated by the multifaceted suffering experienced by patients, calls for giving due consideration to the cultural and spiritual background of the target population. Similarly, the paramount impact of Islamic wholeness on Muslims' perceptions, beliefs, and way of living makes it necessary for non-Muslim palliative care professionals who are caring for Muslim patients to increase their awareness about the parts of Islamic theology pertinent to the principles of palliative care. This would include a basic knowledge of the Islamic faith and how Muslims view and cope with the calamity of a life-threatening condition along with the suffering associated with it. Equally important are issues related to the management of symptoms using agents that are normally strictly prohibited by Islamic teachings, including opioids, brain stimulants, and cannabinoids. The current review briefly discusses the Islamic perspectives pertinent to a Muslim patient's journey throughout the palliative care experience, onward to a safe passing, and beyond.
Defilippi, Kathleen M; Cameron, Sue
This article describes a pilot project, run over a two-year period in the Eastern Cape province of South Africa. It was aimed at assessing the impact of a model of introducing a palliative care component and professional supervision of community caregivers on the quality of care given to people living with HIV/AIDS and their families. The use of the African Palliative Care Association African Palliative Outcome Scale as an assessment tool is outlined, and the challenges and outcomes encountered by the various role players are listed. The overall conclusion is that this model is a cost-effective way of increasing access to palliative care in resource poor settings.
Mun, Eluned; Ceria-Ulep, Clementina; Umbarger, Lillian; Nakatsuka, Craig
Context Is a decrease in length of stay (LOS) in the intensive care unit (ICU) and hospital possible with the implementation of a structured, palliative care, quality-improvement program in the ICU? Objective Incorporate palliative care into the routine ICU workflow to increase the numbers of palliative care consultations, improve end-of-life care in the ICU, and demonstrate an impact on ICU and/or hospital LOS. Design A program was developed that followed recommendations from the Center to Advance Palliative Care’s Improving Palliative Care in the ICU project. This program included selecting trigger criteria and a care model, forming guidelines, and developing evaluation criteria. The early identification of multiple measures led to proactive meetings with ICU patients’ families and/or palliative care consultations. Main Outcome Measures Early identification of advance directives, code status, goals of care, and ICU LOS and hospital LOS. Results A comparison between pre- and postintervention data showed positive trends in measured outcomes, including increased early identification of advance directives, code status, and goals of care along with a decrease in ICU LOS and hospital LOS. In addition, the number of ICU family meetings and palliative care consultations increased. Conclusion It was concluded that providing palliative care in the ICU is feasible and may decrease both ICU LOS and overall hospital LOS. PMID:27644048
Penrod, Joan D.; Pronovost, Peter J.; Livote, Elayne E.; Puntillo, Kathleen A.; Walker, Amy S.; Wallenstein, Sylvan; Mercado, Alice F.; Swoboda, Sandra M.; Ilaoa, Debra; Thompson, David A.; Nelson, Judith E.
Objectives High-quality care for intensive care unit patients and families includes palliative care. To promote performance improvement, the Agency for Healthcare Research and Quality’s National Quality Measures Clearinghouse identified nine evidence-based processes of intensive care unit palliative care (Care and Communication Bundle) that are measured through review of medical record documentation. We conducted this study to examine how frequently the Care and Communication Bundle processes were performed in diverse intensive care units and to understand patient factors that are associated with such performance. Design Prospective, multisite, observational study of performance of key intensive care unit palliative care processes. Settings A surgical intensive care unit and a medical intensive care unit in two different large academic health centers and a medical-surgical intensive care unit in a medium-sized community hospital. Patients Consecutive adult patients with length of intensive care unit stay ≥5 days. Interventions None. Measurements and Main Results Between November 2007 and December 2009, we measured performance by specified day after intensive care unit admission on nine care process measures: identify medical decision-maker, advance directive and resuscitation preference, distribute family information leaflet, assess and manage pain, offer social work and spiritual support, and conduct interdisciplinary family meeting. Multivariable regression analysis was used to determine predictors of performance of five care processes. We enrolled 518 (94.9%) patients and 336 (83.6%) family members. Performances on pain assessment and management measures were high. In contrast, interdisciplinary family meetings were documented for <20% of patients by intensive care unit day 5. Performance on other measures ranged from 8% to 43%, with substantial variation across and within sites. Chronic comorbidity burden and site were the most consistent predictors of care
Cheville, Andrea L; Morrow, Melissa; Smith, Sean Robinson; Basford, Jeffrey R
The growing acceptance of palliative care has created opportunities to increase the use of rehabilitation services among populations with advanced disease, particularly those with cancer. Broader delivery has been impeded by the lack of a shared definition for palliative rehabilitation and a mismatch between patient needs and established rehabilitation service delivery models. We propose the definition that, in the advanced cancer population, palliative rehabilitation is function-directed care delivered in partnership with other clinical disciplines and aligned with the values of patients who have serious and often incurable illnesses in contexts marked by intense and dynamic symptoms, psychological stress, and medical morbidity to realize potentially time-limited goals. Although palliative rehabilitation is most often delivered by inpatient physical medicine and rehabilitation consultation/liaison services and by physical therapists in skilled nursing facilities, outcomes in these settings have received little scrutiny. In contrast, outpatient cancer rehabilitation programs have gained robust evidentiary support attesting to their benefits across diverse settings. Advancing palliative rehabilitation will require attention to historical barriers to the uptake of cancer rehabilitation services, which include the following: patient and referring physicians' expectation that effective cancer treatment will reverse disablement; breakdown of linear models of disablement due to presence of concurrent symptoms and psychological distress; tension between reflexive palliation and impairment-directed treatment; palliative clinicians' limited familiarity with manual interventions and rehabilitation services; and challenges in identifying receptive patients with the capacity to benefit from rehabilitation services. The effort to address these admittedly complex issues is warranted, as consideration of function in efforts to control symptoms and mood is vital to optimize
Hui, David; Bruera, Eduardo
Palliative care aims to improve cancer patients' quality of life through expert symptom management, psychosocial and spiritual care, patient-clinician communication, facilitation of complex decision making, and end-of-life care planning. Over the past few years, there has been increasing interest and evidence to support integration of oncology and palliative care. However, it remains unclear how best to promote integration. The goal of this review is to examine contemporary conceptual models and clinical approaches to integrate oncology and palliative care. Narrative review. Conceptual models are useful to help stakeholders understand the rationale for integration, to compare the risks and benefits among different practices, and to define a vision towards integration. We will review four major conceptual models of integration, including (I) the time-based model which emphasizes on integration based on chronological criterion; (II) the provider-based (palli-centric) model which discusses primary, secondary and tertiary palliative care; (III) the issue-based (onco-centric) model which illustrates the advantages and disadvantages of the solo practice, congress and integrated care approaches; and (IV) the system-based (patient-centric) model which emphasizes automatic referral based on clinical events. Clinical models provide actual data on the feasibility, efficacy and effectiveness of integration in specific settings. The evidence and challenges related to selected clinical models in integrating oncology and palliative care, such as outpatient palliative care clinics and embedded clinics will be discussed. There are multiple conceptual models and clinical models to promote integration. Further research is needed to inform best practices for integration at different healthcare settings.