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

PubMed

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

2017-11-01

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

78 FR 15958 - Submission for OMB Review; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey

Federal Register 2010, 2011, 2012, 2013, 2014

2013-03-13

... Information Collection: NINR developed a Pediatric Palliative Care Campaign to address the communications... conversation and addressing the communications needs of health care providers around this topic. This...; 30-day Comment Request: Pediatric Palliative Care Campaign Pilot Survey SUMMARY: Under the provisions...

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

PubMed

Rose, Jayln; Glass, Nel

2010-05-01

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

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

PubMed

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

2016-04-01

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

Families' experiences with patients who died after assisted suicide: a retrospective interview study in southern Switzerland.

PubMed

Gamondi, C; Pott, M; Payne, S

2013-06-01

In Switzerland, if certain conditions are met, assisted suicide is not prosecuted. International debate suggests that requests for hasten death are often altered by the provision of palliative care. Aims of the study were to explore patients' reasons for choice of assisted suicide and family perceptions of the interactions with health care professionals. This is a qualitative study upon 11 relatives of 8 patients cared for by a palliative care team, deceased of assisted suicide. Pain and symptom burden were not regarded by patients as key reasons to seek assisted suicide: existential distress and fear of loss of control were the determinants. Most patients had made pre-illness decisions to use assisted suicide. A general need for perceived control and fear of dependency were reported as a common characteristic of these patients. Patients held misunderstandings about the nature and purpose of palliative care, and the interviewed indicated that patients did not regard provision of palliative care services as influential in preventing their decision. Assisted suicide was preferred despite provision of palliative care. Better understanding of the importance placed on perceived control and anticipated dependency is needed. Further research is needed to develop appropriate support for patients contemplating assisted suicide.

A Call for Integrated and Coordinated Palliative Care

PubMed Central

2017-01-01

Abstract Integrated palliative care is viewed as having the potential to improve service coordination, efficiency, and quality outcomes for patients and family carers. However, the majority of Canadians do not have access to regional, comprehensive, integrated palliative care. Work needs to be directed toward planning palliative care services that is integrated into the healthcare and social care system. To further this goal, it is important to have a conceptual understanding of the meaning of integrated care and its expression in organizational models for the provision of palliative care. PMID:29283874

Requests from professional care providers for consultation with palliative care consultation teams.

PubMed

Groot, Marieke M; Vernooij-Dassen, Myrra J F J; Courtens, Annemie M; Kuin, Annemieke; van der Linden, Barbara A; van Zuylen, Lia; Crul, Ben J P; Grol, Richard P T M

2005-11-01

Professional care providers need a substantial basis of competence and expertise to provide appropriate palliative care. Little is known about the problems professionals experience in their palliative care provision in daily practice or about the nature of the advice and support they request from experts. Our aim was to investigate the extent to which professionals requested assistance from palliative care consultation teams and the reasons behind these requests to trace any gaps they experience in the provision of palliative care. As part of a large national palliative care development programme, we studied requests for consultation made by professional care providers over a 2-year period. The requests for consultation were recorded on a specially developed standard registration form and classified according to 11 domains relevant to palliative care. Professional care providers requested 4351 consultations on account of 8413 specific problems in 11 quality-of-life and quality-of-care domains. The distribution of problems over these domains was unbalanced: 42.2% of the specific problems were physical, while the percentages of psychological, pharmacological and organizational problems were 7.7, 12.5 and 12.8%, respectively. In contrast, issues of a spiritual nature or concerned with daily functioning were raised infrequently (1.1 and 0.9%). Details of the specific problems in all the domains are described in the text and tables. The results of our study form a valid basis on which to develop and implement improvements in palliative care. We recommend that future well-founded policies for palliative care should incorporate palliative care consultation as well as educational and organizational interventions.

Development of a Community-Based Palliative Care Model for Advance Cancer Patients in Public Health Centers in Busan, Korea.

PubMed

Kim, Sook-Nam; Choi, Soon-Ock; Shin, Seong Hoon; Ryu, Ji-Sun; Baik, Jeong-Won

2017-07-01

A feasible palliative care model for advance cancer patients is needed in Korea with its rapidly aging population and corresponding increase in cancer prevalence. This study describes the process involved in the development of a community-based palliative care (CBPC) model implemented originally in a Busan pilot project. The model development included steps I and II of the pilot project, identification of the service types, a survey exploring the community demand for palliative care, construction of an operational infrastructure, and the establishment of a service delivery system. Public health centers (including Busan regional cancer centers, palliative care centers, and social welfare centers) served as the regional hubs in the development of a palliative care model. The palliative care project included the provision of palliative care, establishment of a support system for the operations, improvement of personnel capacity, development of an educational and promotional program, and the establishment of an assessment system to improve quality. The operational infrastructure included a service management team, provision teams, and a support team. The Busan Metropolitan City CBPC model was based on the principles of palliative care as well as the characteristics of public health centers that implemented the community health projects. The potential use of the Busan CBPC model in Korea should be explored further through service evaluations.

Recommendations for palliative and bereavement care in the NICU: a family-centered integrative approach.

PubMed

Kenner, C; Press, J; Ryan, D

2015-12-01

Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with palliative care. This article's purpose is to define best practices for the provision of family-centered perinatal and neonatal palliative care and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations.

What are the priorities for developing culturally appropriate palliative and end-of-life care for older people? The views of healthcare staff working in New Zealand.

PubMed

Bellamy, Gary; Gott, Merryn

2013-01-01

This paper explores the views of healthcare staff regarding the provision of culturally appropriate palliative care for Māori, Pacific Island and Chinese elders living in Auckland, New Zealand. The ageing population is culturally and ethnically diverse and, along with other developed countries experiencing high levels of migration, the challenge is balancing the rise in numbers of older people from different ethnic and cultural groups with end-of-life care, which reflects personal values and beliefs. Two joint interviews and ten focus groups were conducted with eighty staff across a range of primary, secondary and speciality care settings in 2010. The findings demonstrated that participants viewed the involvement of family as fundamental to the provision of palliative care for Māori, Pacific Island and Chinese elders. For Māori and Pacific Islanders, healthcare staff indicated the importance of enabling family members to provide 'hands-on' care. The role of family in decision-making was fundamental to the delivery of and satisfaction with care for older Chinese family members. Care staff highlighted the need to be cognisant of individual preferences both within and across cultures as a fundamental aspect of palliative care provision. The role of family in 'hands-on' palliative care and decision-making requires care staff to relinquish their role as 'expert provider'. Counter to the prioritisation of autonomy in Western health-care, collective decision-making was favoured by Chinese elders. Providing families with the requisite knowledge and skills to give care to older family members was important. Whilst assumptions are sometimes made about preferences for end-of-life care based on cultural values alone, these data suggest that care preferences need to be ascertained by working with family members on an individual basis and in a manner that respects their involvement in palliative care provision. © 2012 Blackwell Publishing Ltd.

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

PubMed

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

2017-05-31

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

[Extending the palliative approach across the French health system].

PubMed

Mino, Jean-Christophe

2015-11-01

The care provision for people at the end of life requires a palliative care approach to be extended across the whole healthcare system. Access to palliative care for everyone requires training for professionals, support for specialised structures and teams as well as clear political will. Copyright © 2015 Elsevier Masson SAS. All rights reserved.

Barriers to providing palliative care in long-term care facilities

PubMed Central

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

2006-01-01

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

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

PubMed

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

2006-04-01

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

Common threads? Palliative care service developments in seven European countries.

PubMed

Clark, D; ten Have, H; Janssens, R

2000-11-01

Since the late 1960s hospice and palliative care services have been developing in many European countries. Although attention has been given to patterns of development in specific national contexts, so far we lack a comparative understanding of how these services are organized and delivered. Such a comparison poses certain practical and methodological difficulties. It does, however, allow a wider view of the current provision of palliative care in Europe, together with a consideration of implications for the future. We report on an analysis of palliative care developments in seven European countries which gave attention to early origins, patterns of provision, and structural and policy integration. We conclude that, despite different processes of development, the emergent discipline of palliative care now finds its most congenial home within the structures of the formal health care system. Accordingly, inequities between the seven countries can be more clearly identified, posing continuing challenges to policy makers and planners who operate with a European perspective.

Transforming children’s palliative care—from ideas to action: highlights from the first ICPCN conference on children’s palliative care

PubMed Central

Downing, J; Marston, J; Muckaden, MA; Boucher, S; Cardoz, M; Nkosi, B; Steel, B; Talawadekar, P; Tilve, P

2014-01-01

The International Children’s Palliative Care Network (ICPCN) held its first international conference on children’s palliative care, in conjunction with Tata Memorial Centre, in Mumbai, India, from 10–12 February 2014. The theme of the conference, Transforming children’s palliative care—from ideas to action, reflected the vision of the ICPCN to live in a world where every child who needs it, can access palliative care, regardless of where they live. Key to this is action, to develop service provision and advocate for children’s palliative care. Three pre-conference workshops were held on 9 February, aimed at doctors, nurses, social workers, and volunteers, and focused around the principles of children’s palliative care, and in particular pain and symptom management. The conference brought together 235 participants representing 38 countries. Key themes identified throughout the conference included: the need for advocacy and leadership; for education and research, with great strides having been taken in the development of an evidence base for children’s palliative care, along with the provision of education; the importance of communication and attention to spirituality in children, and issues around clinical care, in particular for neonates. Delegates were continually challenged to transform children’s palliative care in their parts of the world and the conference culminated in the signing of the ICPCN Mumbai Declaration. The Declaration calls upon governments around the world to improve access to quality children’s palliative care services and made a call on the Belgian government not to pass a bill allowing children to be euthanised in that country. The conference highlighted many of the ongoing developments in children’s palliative care around the world, and as she closed the conference, Joan Marston (ICPCN CEO) challenged participants to take positive action and be the champions that the children need, thus transforming children’s palliative care. PMID:24761156

Differences in home-based palliative care service utilisation of people with cancer and non-cancer conditions.

PubMed

Kralik, Debbie; Anderson, Barbara

2008-11-01

To identify home-based palliative care service utilisation by people with cancer and non-cancer conditions. Palliative care knowledge and skill have been derived from working with people with cancer. People with chronic conditions are now referred for home-based palliative care; however, there has been few studies published that have explored the impact of service utilisation by people with end-stage chronic conditions. The Australia-modified Karnofsky Performance Status (AKPS) scale was calculated for each person upon referral for home-based palliative care services to determine the functional capacity of the individual at the point of referral. Clients were divided into those with cancer diagnosis and those with non-cancer diagnosis. Service utilisation of the individual client was determined until separation from the palliative care service. The study was undertaken in 2007. The majority of people with cancer (63%) and non-cancer (71%) were assessed as having an AKPS score between 50-60. Thirty-one cancer clients (18·7%) and three non-cancer clients (7·1%) had an AKPS score between 70-90. This suggests that people with cancer are referred to palliative care services earlier than people with non-cancer conditions. People with non-cancer conditions were substantially higher users of home-based palliative care services over a longer period of time. Home-based palliative care service utilisation was higher for people with non-cancer conditions. Cost analysis research is recommended to delineate the actual costs of home-based palliative care service provision between people with cancer and non-cancer conditions. There is growing awareness of the need for palliative care services for people with non-cancer conditions. However, these services are provided for longer periods of time for this client group. Implications for practice are that the palliative care needs of people with non-cancer conditions may not be met within current palliative care service provision. There may be funding implications for home-based palliative care services that intend to meet the needs of people at end of life with non-cancer conditions. © 2008 The Authors. Journal compilation © 2008 Blackwell Publishing Ltd.

Community Pharmacists' Attitudes Toward Palliative Care: An Australian Nationwide Survey

PubMed Central

Hewitt, Lauren Y.; Tuffin, Penelope H.R.

2013-01-01

Abstract Background: Pharmacists are among the most accessible health care professionals in the community, yet are often not involved in community palliative care teams. Objective: We investigated community pharmacists' attitudes, beliefs, feelings, and knowledge about palliative care as a first step towards determining how best to facilitate the inclusion of community pharmacists on the palliative care team. Method: A cross-sectional descriptive survey design was used. Subjects: Community pharmacists around Australia were invited to participate; 250 completed surveys were returned. Measurements: A survey was constructed to measure pharmacists' knowledge and experience, emotions and beliefs about palliative care. Results: Pharmacists were generally positive about providing services and supports for palliative care patients, yet they also reported negative beliefs and emotions about palliative care. In addition, pharmacists had good knowledge of some aspects of palliative care, but misconceptions about other aspects. Pharmacists' beliefs and knowledge about palliative care predicted—and therefore underpinned—a positive attitude towards palliative care and the provision of services and supports for palliative care patients. Conclusion: The results provide evidence that pharmacists need training and support to facilitate their involvement in providing services and supports for palliative care patients, and highlight areas that training and support initiatives should focus on. PMID:24147876

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

PubMed

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

2013-12-01

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

The challenges of uncertainty and interprofessional collaboration in palliative care for non-cancer patients in the community: A systematic review of views from patients, carers and health-care professionals

PubMed Central

Murtagh, Fliss EM

2014-01-01

Background: Primary care has the potential to play significant roles in providing effective palliative care for non-cancer patients. Aim: To identify, critically appraise and synthesise the existing evidence on views on the provision of palliative care for non-cancer patients by primary care providers and reveal any gaps in the evidence. Design: Standard systematic review and narrative synthesis. Data sources: MEDLINE, Embase, CINAHL, PsycINFO, Applied Social Science Abstract and the Cochrane library were searched in 2012. Reference searching, hand searching, expert consultations and grey literature searches complemented these. Papers with the views of patients/carers or professionals on primary palliative care provision to non-cancer patients in the community were included. The amended Hawker’s criteria were used for quality assessment of included studies. Results: A total of 30 studies were included and represent the views of 719 patients, 605 carers and over 400 professionals. In all, 27 studies are from the United Kingdom. Patients and carers expect primary care physicians to provide compassionate care, have appropriate knowledge and play central roles in providing care. The roles of professionals are unclear to patients, carers and professionals themselves. Uncertainty of illness trajectory and lack of collaboration between health-care professionals were identified as barriers to effective care. Conclusions: Effective interprofessional work to deal with uncertainty and maintain coordinated care is needed for better palliative care provision to non-cancer patients in the community. Research into and development of a best model for effective interdisciplinary work are needed. PMID:24821710

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

PubMed

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

2009-09-14

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

Practical problems for Aboriginal palliative care service provision in rural and remote areas: equipment, power and travel issues.

PubMed

McGrath, Pam; Holewa, Hamish; McGrath, Zoe

2007-07-01

With regards to end-of-life care, there is scant published research that looks specifically at the provision of palliative care services for Indigenous people. In addition, for Indigenous people in the rural and remote areas there is only limited literature that focuses on the problems associated with geography. To address the hiatus in the literature on Aboriginal, rural and remote palliative care, the following article provides findings from a two-year research project, funded by Australia's National Health and Medical Research Council (NH&MRC), which developed an innovative model for Indigenous palliative care. The data was collected through a qualitative methodology (descriptive phenomenology) which involved open-ended in-depth interviews, audio-recorded, transcribed verbatim and thematically analysed. The sub-set of findings from the study presented in this paper examine issues in relation to the many practical obstacles in relation to palliative care service provision to Indigenous people in the rural and remote areas. The findings are a testament to the ingenuity and dedication of those who provide end-of-life care for Aboriginal peoples in rural and remote locations. The information about the many obstacles associated with equipment, power, transport, distance and telephone access provide important insights to inform the development of health policy planning and funding. The topic is specifically relevant to nurses as further findings from the study indicate that clinic and community nurses are key health professionals providing care to Indigenous people in the rural and remote areas.

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

PubMed Central

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

2015-01-01

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

Advancing palliative care as a human right.

PubMed

Gwyther, Liz; Brennan, Frank; Harding, Richard

2009-11-01

The international palliative care community has articulated a simple but challenging proposition that palliative care is an international human right. International human rights covenants and the discipline of palliative care have, as common themes, the inherent dignity of the individual and the principles of universality and nondiscrimination. However, when we consider the evidence for the effectiveness of palliative care, the lack of palliative care provision for those who may benefit from it is of grave concern. Three disciplines (palliative care, public health, and human rights) are now interacting with a growing resonance. The maturing of palliative care as a clinical specialty and academic discipline has coincided with the development of a public health approach to global and community-wide health problems. The care of the dying is a public health issue. Given that death is both inevitable and universal, the care of people with life-limiting illness stands equal to all other public health issues. The International Covenant on Economic, Social and Cultural Rights (ICESCR) includes the right to health care and General Comment 14 (paragraph 34) CESCR stipulates that "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons, ... to preventive, curative and palliative health services." However, these rights are seen to be aspirational-rights to be achieved progressively over time by each signatory nation to the maximum capacity of their available resources. Although a government may use insufficient resources as a justification for inadequacies of its response to palliative care and pain management, General Comment 14 set out "core obligations" and "obligations of comparable priority" in the provision of health care and placed the burden on governments to justify "that every effort has nevertheless been made to use all available resources at its disposal in order to satisfy, as a matter of priority, [these] obligations." This article describes recent advocacy activities and explores practical strategies for the palliative care community to use within a human rights framework to advance palliative care development worldwide.

Getting comfortable with "comfort feeding": An exploration of legal and ethical aspects of the Australian speech-language pathologist's role in palliative dysphagia care.

PubMed

Kelly, Katherine; Cumming, Steven; Kenny, Belinda; Smith-Merry, Jennifer; Bogaardt, Hans

2018-06-01

With an ageing population, speech-language pathologists (SLPs) can expect to encounter legal and ethical challenges associated with palliative and end-of-life care more frequently. An awareness of the medico-legal and ethical framework for palliative dysphagia management will better equip SLPs to work effectively in this area. This narrative review examines a range of legislation, legal, ethical and SLP literature that is currently available to orient SLPs to legal and ethical palliative dysphagia management in the Australian context. Relevant legal and ethical considerations in palliative and end-of-life care are described. SLPs have a role in palliative dysphagia management, however, this can involve unique legal and ethical challenges. The legal position on provision and cessation of nutrition and hydration differs between Australian States and Territories. Decisions by the courts have established a body of relevant case law. This article introduces SLPs to some of the important considerations for legal and ethical palliative care, but is not intended to be directive. SLPs are encouraged to explore their local options for ethical and medico-legal guidance. It is hoped that increasing SLPs awareness of many of the concepts discussed in this article enhances the provision of high-quality patient-centred care.

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

PubMed

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

2016-01-01

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

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

PubMed

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

2018-04-01

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

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

PubMed

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

2016-01-01

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

The magnitude, share and determinants of unpaid care costs for home-based palliative care service provision in Toronto, Canada.

PubMed

Chai, Huamin; Guerriere, Denise N; Zagorski, Brandon; Coyte, Peter C

2014-01-01

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.

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

PubMed

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

2018-06-01

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

Ethical issues in palliative care for nursing homes: Development and testing of a survey instrument.

PubMed

Preshaw, Deborah Hl; McLaughlin, Dorry; Brazil, Kevin

2018-02-01

To develop and psychometrically assess a survey instrument identifying ethical issues during palliative care provision in nursing homes. Registered nurses and healthcare assistants have reported ethical issues in everyday palliative care provision. Identifying these issues provides evidence to inform practice development to support healthcare workers. Cross-sectional survey of Registered nurses and healthcare assistants in nursing homes in one region of the UK. A survey instrument, "Ethical issues in Palliative Care for Nursing homes", was developed through the findings of qualitative interviews with Registered nurses and healthcare assistants in nursing homes and a literature review. It was reviewed by an expert panel and piloted prior to implementation in a survey in 2015 with a convenience sample of 596 Registered nurses and healthcare assistants. Descriptive and exploratory factor analyses were used to assess the underlying structure of the Frequency and Distress Scales within the instrument. Analysis of 201 responses (response rate = 33.7%) revealed four factors for the Frequency Scale and five factors for the Distress Scale that comprise the Ethical issues in Palliative Care for Nursing homes. Factors common to both scales included "Processes of care," "Resident autonomy" and "Burdensome treatment." Additionally, the Frequency Scale included "Competency," and the Distress Scale included "Quality of care" and "Communication." The Ethical issues in Palliative Care for Nursing homes instrument has added to the palliative care knowledge base by considering the ethical issues experienced specifically by Registered nurses and healthcare assistants within the nursing home. This research offers preliminary evidence of the psychometric properties of the Ethical issues in Palliative Care for Nursing homes survey instrument. The two largest factors highlight the need to address the organisational aspects of caring and provide training in negotiating conflicting ethical principles. © 2017 John Wiley & Sons Ltd.

Palliative Care in Moldova.

PubMed

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

2018-02-01

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

Palliative Care Development in Kyrgyzstan.

PubMed

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

2018-02-01

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

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

PubMed

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

2017-03-01

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

Palliative Care for Patients with Nonmalignant Respiratory Disease

PubMed Central

Gupta, Nishkarsh; Garg, Rakesh; Kumar, Vinod; Bharati, Sachidanand Jee; Mishra, Seema; Bhatnagar, Sushma

2017-01-01

Nonmalignant respiratory diseases are chronic and life-limiting conditions that need holistic palliative care. Such patients not only have a variety of physical symptoms such as dyspnea, pain, cough, depression, and anxiety, but also have a number of psychosocial and spiritual issues, which are not addressed to by us. This leads to a poor quality of life. Hence, these patients require supportive palliative care to relieve their sufferings, but unfortunately such care is not available to them in our country. In this article, we have tried to discuss the barriers to the provision of palliative care to such patients and suggested some measures to overcome them. PMID:28827944

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

PubMed Central

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

2009-01-01

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

Palliative sedation: a focus group study on the experiences of relatives.

PubMed

Bruinsma, Sophie; Rietjens, Judith; van der Heide, Agnes

2013-04-01

Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Focus groups and individual interviews. Various care settings in the Netherlands. A total of 14 relatives of patients who received palliative sedation until death participated. Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of "hastening death" as disadvantages of palliative sedation. Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.

Effectively using communication to enhance the provision of pediatric palliative care in an acute care setting.

PubMed

Hubble, Rosemary; Trowbridge, Kelly; Hubbard, Claudia; Ahsens, Leslie; Ward-Smith, Peggy

2008-08-01

The capability of effectively communicating is crucial when providing palliative care, especially when the patient is a child. Communication among healthcare professionals with the child and family members must be clear, concise, and consistent. Use of a communication tool provides documentation for conversations, treatment plans, and specific desires related to care. This paper describes communication theory, portrays the use of this theory to develop a communication tool, and illustrates the use of this tool by multidisciplinary members of a healthcare team to provide pediatric palliative care.

Acting with dedication and expertise: Relatives' experience of nurses' provision of care in a palliative unit.

PubMed

Grøthe, Å; Biong, Stian; Grov, E K

2015-12-01

Admission of a cancer patient to a palliative unit when near the final stage of their disease trajectory undoubtedly impacts their relatives. The aim of our study was to illuminate and interpret relatives' lived experiences of health personnel's provision of care in a palliative ward. A phenomenological/hermeneutic approach was employed that was inspired by the philosophical tradition of Heidegger and Ricoeur and further developed by Lindseth and Nordberg. The perspectives of the narrator and the text were interpreted by highlighting relatives' views on a situation in which they have to face existential challenges. The analysis was undertaken in three steps: naïve reading, structural analysis, and comprehensive understanding, including the authors' professional experiences and theoretical background. Six subthemes appeared: the dying person, the bubble, the sight, the cover, the provision for children's needs, and the availability of immediate help. These components were further constructed into three themes: the meaning of relating, the meaning of action, and the meaning of resources. Our comprehensive understanding of the results suggests that the most important theme is "acting with dedication and expertise." The following aspects are crucial for relatives of cancer patients hospitalized in a palliative ward: time and existence, family dynamics, and care adjusted to the situation. Our study results led to reflections on the impact of how nurses behave when providing care to patients during the palliative phase, and how they interact with relatives in this situation. We found that cancer patients in a palliative unit most appreciate nurses who act with dedication and expertise.

Quality assessment of palliative home care in Italy.

PubMed

Scaccabarozzi, Gianlorenzo; Lovaglio, Pietro Giorgio; Limonta, Fabrizio; Floriani, Maddalena; Pellegrini, Giacomo

2017-08-01

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 to afford future quality and normative challenges. © 2017 John Wiley & Sons, Ltd.

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

PubMed

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

2015-04-01

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

Palliative Care-Albania.

PubMed

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

2018-02-01

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

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

PubMed

Martins Pereira, Sandra; Hernández-Marrero, Pablo

2016-10-01

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

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol

PubMed Central

Guo, Ping; Dzingina, Mendwas; Firth, Alice M; Davies, Joanna M; Douiri, Abdel; O’Brien, Suzanne M; Pinto, Cathryn; Pask, Sophie; Higginson, Irene J; Eagar, Kathy; Murtagh, Fliss E M

2018-01-01

Introduction Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. Methods and analysis Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. Ethics and dissemination The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. Trial registration number ISRCTN90752212. PMID:29550781

Development and validation of a casemix classification to predict costs of specialist palliative care provision across inpatient hospice, hospital and community settings in the UK: a study protocol.

PubMed

Guo, Ping; Dzingina, Mendwas; Firth, Alice M; Davies, Joanna M; Douiri, Abdel; O'Brien, Suzanne M; Pinto, Cathryn; Pask, Sophie; Higginson, Irene J; Eagar, Kathy; Murtagh, Fliss E M

2018-03-17

Provision of palliative care is inequitable with wide variations across conditions and settings in the UK. Lack of a standard way to classify by case complexity is one of the principle obstacles to addressing this. We aim to develop and validate a casemix classification to support the prediction of costs of specialist palliative care provision. Phase I: A cohort study to determine the variables and potential classes to be included in a casemix classification. Data are collected from clinicians in palliative care services across inpatient hospice, hospital and community settings on: patient demographics, potential complexity/casemix criteria and patient-level resource use. Cost predictors are derived using multivariate regression and then incorporated into a classification using classification and regression trees. Internal validation will be conducted by bootstrapping to quantify any optimism in the predictive performance (calibration and discrimination) of the developed classification. Phase II: A mixed-methods cohort study across settings for external validation of the classification developed in phase I. Patient and family caregiver data will be collected longitudinally on demographics, potential complexity/casemix criteria and patient-level resource use. This will be triangulated with data collected from clinicians on potential complexity/casemix criteria and patient-level resource use, and with qualitative interviews with patients and caregivers about care provision across difference settings. The classification will be refined on the basis of its performance in the validation data set. The study has been approved by the National Health Service Health Research Authority Research Ethics Committee. The results are expected to be disseminated in 2018 through papers for publication in major palliative care journals; policy briefs for clinicians, commissioning leads and policy makers; and lay summaries for patients and public. ISRCTN90752212. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

Physician-assisted suicide and/or euthanasia: Pragmatic implications for palliative care [corrected].

PubMed

Hudson, Peter; Hudson, Rosalie; Philip, Jennifer; Boughey, Mark; Kelly, Brian; Hertogh, Cees

2015-10-01

Despite the availability of palliative care in many countries, legalization of euthanasia and physician-assisted suicide (EAS) continues to be debated-particularly around ethical and legal issues--and the surrounding controversy shows no signs of abating. Responding to EAS requests is considered one of the most difficult healthcare responsibilities. In the present paper, we highlight some of the less frequently discussed practical implications for palliative care provision if EAS were to be legalized. Our aim was not to take an explicit anti-EAS stance or expand on findings from systematic reviews or philosophical and ethico-legal treatises, but rather to offer clinical perspectives and the potential pragmatic implications of legalized EAS for palliative care provision, patients and families, healthcare professionals, and the broader community. We provide insights from our multidisciplinary clinical experience, coupled with those from various jurisdictions where EAS is, or has been, legalized. We believe that these issues, many of which are encountered at the bedside, must be considered in detail so that the pragmatic implications of EAS can be comprehensively considered. Increased resources and effort must be directed toward training, research, community engagement, and ensuring adequate resourcing for palliative care before further consideration is given to allocating resources for legalizing euthanasia and physician-assisted suicide.

European Association for Palliative Care: Forging a Vision of Excellence in Palliative Care in Central and Eastern European and Former Soviet Union Countries.

PubMed

Radbruch, Lukas; Ling, Julie; Hegedus, Katalin; Larkin, Philip

2018-02-01

The European Association for Palliative Care (EAPC) represents many thousands of health care workers and volunteers working in or with an interest in palliative care. In 2016, the EAPC has individual members from 48 nations across the world, and collective members from 57 national palliative care associations in 32 European countries. Throughout its history, the EAPC has produced guidance on a range of palliative care issues. The biennial congresses and research congresses and the comprehensive Web site (www.eapcnet.eu) are renowned and well utilized platforms for dissemination and exchange of palliative care information. The EAPC has also published a newsletter specifically for Eastern European and Central Asian countries that has been available in both English and Russian from 2005 to 2012. In addition, for a period of time, a Russian Web site (www.eapcspeaksrussian.eu) was also available. A survey of palliative care in Central and Eastern European nations sponsored by Open Society Foundation's International Palliative Care Initiative found that in most countries, the national language is preferred rather than using English or Russian for the provision of information. Accordingly, the EAPC Web site provides translations of white papers, position papers, and blog posts in a number of languages. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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

PubMed

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

2018-02-01

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

Revisiting the use of 'place' as an analytic tool for elucidating geographic issues central to Canadian rural palliative care.

PubMed

Giesbrecht, Melissa; Crooks, Valorie A; Castleden, Heather; Schuurman, Nadine; Skinner, Mark W; Williams, Allison M

2016-09-01

In 2010, Castleden and colleagues published a paper in this journal using the concept of 'place' as an analytic tool to understand the nature of palliative care provision in a rural region in British Columbia, Canada. This publication was based upon pilot data collected for a larger research project that has since been completed. With the addition of 40 semi-structured interviews with users and providers of palliative care in four other rural communities located across Canada, we revisit Castleden and colleagues' (2010) original framework. Applying the concept of place to the full dataset confirmed the previously published findings, but also revealed two new place-based dimensions related to experiences of rural palliative care in Canada: (1) borders and boundaries; and (2) 'making' place for palliative care progress. These new findings offer a refined understanding of the complex interconnections between various dimensions of place and palliative care in rural Canada. Copyright © 2016 Elsevier Ltd. All rights reserved.

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

PubMed

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

2018-06-01

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

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

PubMed Central

Eva, Gail; Morgan, Deidre

2018-01-01

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

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

PubMed

Eva, Gail; Morgan, Deidre

2018-05-01

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

'No matter what the cost': A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context.

PubMed

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

2015-06-01

There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Auckland, New Zealand. Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. © The Author(s) 2015.

‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context

PubMed Central

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

2015-01-01

Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings. PMID:25680378

Music therapy for palliative care: A realist review.

PubMed

McConnell, Tracey; Porter, Sam

2017-08-01

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation. We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works. A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation. Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Paediatric Palliative Care in Resource-Poor Countries

PubMed Central

Boucher, Sue; Daniels, Alex; Nkosi, Busi

2018-01-01

There is a great need for paediatric palliative care (PPC) services globally, but access to services is lacking in many parts of the world, particularly in resource-poor settings. Globally it is estimated that 21.6 million children need access to palliative care, with 8.2 needing specialist services. PC has been identified as important within the global health agenda e.g., within universal health coverage, and a recent Lancet commission report recognised the need for PPC. However, a variety of challenges have been identified to PPC development globally such as: access to treatment, access to medications such as oral morphine, opiophobia, a lack of trained health and social care professionals, a lack of PPC policies and a lack of awareness about PPC. These challenges can be overcome utilising a variety of strategies including advocacy and public awareness, education, access to medications, implementation and research. Examples will be discussed impacting on the provision of PPC in resource-poor settings. High-quality PPC service provision can be provided with resource-poor settings, and there is an urgent need to scale up affordable, accessible, and quality PPC services globally to ensure that all children needing palliative care can access it. PMID:29463065

General practitioners' perceptions of the barriers and solutions to good-quality palliative care in dementia.

PubMed

Carter, Gillian; van der Steen, Jenny T; Galway, Karen; Brazil, Kevin

2015-04-16

The general practitioner (GP) is in a pivotal position to initiate and adapt care for their patients living with dementia. This study aimed to elicit GPs' perceptions of the potential barriers and solutions to the provision of good-quality palliative care in dementia in their practices. A postal survey of GPs across Northern Ireland was conducted with open-ended items soliciting for barriers in their practices and possible solutions; 40.6% (138/340) were returned completed. Barriers to palliative care in dementia were perceived to be a dementia knowledge deficit for healthcare staff and the public, a resource shortfall within the GP practice and community, poor team coordination alongside inappropriate dementia care provision, and disagreements from and within families. These findings have significant implications for educators and clinicians as enhanced dementia education and training were highlighted as a strong agenda for GPs with the suggestions of dementia awareness programmes for the public. © The Author(s) 2015 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav.

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care.

PubMed

Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

2014-01-01

The aim of this study was to investigate first-line nursing home managers' views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested.

First-Line Nursing Home Managers in Sweden and their Views on Leadership and Palliative Care

PubMed Central

Håkanson, Cecilia; Cronfalk, Berit Seiger; Henriksen, Eva; Norberg, Astrid; Ternestedt, Britt-Marie; Sandberg, Jonas

2015-01-01

The aim of this study was to investigate first-line nursing home managers’ views on their leadership and related to that, palliative care. Previous research reveals insufficient palliation, and a number of barriers towards implementation of palliative care in nursing homes. Among those barriers are issues related to leadership quality. First-line managers play a pivotal role, as they influence working conditions and quality of care. Nine first-line managers, from different nursing homes in Sweden participated in the study. Semi-structured interviews were conducted and analysed using qualitative descriptive content analysis. In the results, two categories were identified: embracing the role of leader and being a victim of circumstances, illuminating how the first-line managers handle expectations and challenges linked to the leadership role and responsibility for palliative care. The results reveal views corresponding to committed leaders, acting upon demands and expectations, but also to leaders appearing to have resigned from the leadership role, and who express powerlessness with little possibility to influence care. The first line managers reported their own limited knowledge about palliative care to limit their possibilities of taking full leadership responsibility for implementing palliative care principles in their nursing homes. The study stresses that for the provision of high quality palliative care in nursing homes, first-line managers need to be knowledgeable about palliative care, and they need supportive organizations with clear expectations and goals about palliative care. Future action and learning oriented research projects for the implementation of palliative care principles, in which first line managers actively participate, are suggested. PMID:25628769

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

PubMed

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

2017-05-01

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

Exploring the Experiences of People with Intellectual Disabilities when Service Users Die

ERIC Educational Resources Information Center

Ryan, Karen; Guerin, Suzanne; Dodd, Philip; McEvoy, John

2011-01-01

Research is lacking on the effect of the deaths of fellow service users on people with intellectual disabilities. This qualitative study formed part of a project which aimed to describe the provision of palliative care to people with intellectual disabilities in Ireland and to assess the population's palliative care needs. We report on findings…

Establishing hospice care for prison populations: An integrative review assessing the UK and USA perspective.

PubMed

Stone, Katie; Papadopoulos, Irena; Kelly, Daniel

2012-12-01

models of care based on the hospice model have delivered effective support to dying people since their inception. Over the last 20 years this form of care has also been introduced into the prison system (mainly in the United States) to afford terminally ill inmates the right to die with dignity. the aim of this review is to examine the evidence from the United States and the United Kingdom on the promotion of palliative care in the prison sector, summarizing examples of good practice and identifying barriers for the provision of end-of-life care within the prison environment both in the USA and UK. an integrative review design was adopted using the Green et al. model incorporating theoretical and scientific lines of enquiry. literature was sourced from six electronic databases between the years 2000 and 2011; the search rendered both qualitative and quantitative papers, discussion papers, 'grey literature' and other review articles. the results highlight a number of issues surrounding the implementation of palliative care services within the prison setting and emphasize the disparity between the USA model of care (which emphasizes the in-prison hospice) and the UK model of care (which emphasizes palliative care in-reach) for dying prisoners. the provision of palliative care for the increasing prison population remains under-researched globally, with a notable lack of evidence from the United Kingdom.

Islamic theology and the principles of palliative care.

PubMed

Al-Shahri, Mohammad Zafir

2016-12-01

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.

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

PubMed

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

2018-01-05

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

Economic impact of hospital inpatient palliative care consultation: review of current evidence and directions for future research.

PubMed

May, Peter; Normand, Charles; Morrison, R Sean

2014-09-01

Maintaining the recent expansion of palliative care access in the United States is a recognized public health concern. Economic evaluation is essential to validate current provision and assess the case for new programs. Previous economic reviews in palliative care reported on programs across settings and systems; none has examined specifically the hospital consultative model, the dominant model of provision in the United States. To review systematically the economic evidence on specialist palliative care consultation teams in the hospital setting, to appraise this evidence critically, and to identify areas for future research in this field. A meta-review ("a review of existing reviews") was conducted of eight published systematic reviews and one relevant nonsystematic review. To identify articles published outside of the timeframe of these reviews, systematic searches were performed on the PubMed, CINAHL, and EconLit databases. Articles were included if they compared the costs and/or cost effectiveness of a specialist hospital inpatient palliative care consultation for adult patients with those of a comparator. Ten studies were included and these demonstrate a clear pattern of cost-saving impact from inpatient consultation programs. Nevertheless, knowledge gaps still exist regarding the economic effects of these programs. Current evidence has been generated from the hospital perspective; health system costs, patient and caregiver costs, and health outcomes are typically not included. Inpatient palliative care consultation programs have been shown to save hospitals money and to provide improved care to patients with serious illness. With a clear pattern of cost-saving using current methodology, it is timely to begin expanding the scope of economic evaluation in this field. Future research must address the measurement of both costs and outcomes to understand more fully the role that palliative care plays in enhancing value in health care. Relevant domains for such research are identified.

Economic Impact of Hospital Inpatient Palliative Care Consultation: Review of Current Evidence and Directions for Future Research

PubMed Central

Normand, Charles; Morrison, R. Sean

2014-01-01

Abstract Background: Maintaining the recent expansion of palliative care access in the United States is a recognized public health concern. Economic evaluation is essential to validate current provision and assess the case for new programs. Previous economic reviews in palliative care reported on programs across settings and systems; none has examined specifically the hospital consultative model, the dominant model of provision in the United States. Objectives: To review systematically the economic evidence on specialist palliative care consultation teams in the hospital setting, to appraise this evidence critically, and to identify areas for future research in this field. Data Sources: A meta-review (“a review of existing reviews”) was conducted of eight published systematic reviews and one relevant nonsystematic review. To identify articles published outside of the timeframe of these reviews, systematic searches were performed on the PubMed, CINAHL, and EconLit databases. Study Selection: Articles were included if they compared the costs and/or cost effectiveness of a specialist hospital inpatient palliative care consultation for adult patients with those of a comparator. Results: Ten studies were included and these demonstrate a clear pattern of cost-saving impact from inpatient consultation programs. Nevertheless, knowledge gaps still exist regarding the economic effects of these programs. Current evidence has been generated from the hospital perspective; health system costs, patient and caregiver costs, and health outcomes are typically not included. Conclusions: Inpatient palliative care consultation programs have been shown to save hospitals money and to provide improved care to patients with serious illness. With a clear pattern of cost-saving using current methodology, it is timely to begin expanding the scope of economic evaluation in this field. Future research must address the measurement of both costs and outcomes to understand more fully the role that palliative care plays in enhancing value in health care. Relevant domains for such research are identified. PMID:24984168

Palliative Sedation: An Analysis of International Guidelines and Position Statements.

PubMed

Gurschick, Lauren; Mayer, Deborah K; Hanson, Laura C

2015-09-01

To describe the suggested clinical practice of palliative sedation as it is presented in the literature and discuss available guidelines for its use. CINAHL, PubMed, and Web of Science were searched for publications since 1997 for recommended guidelines and position statements on palliative sedation as well as data on its provision. Keywords included palliative sedation, terminal sedation, guidelines, United States, and end of life. Inclusion criteria were palliative sedation policies, frameworks, guidelines, or discussion of its practice, general or oncology patient population, performance of the intervention in an inpatient unit, for humans, and in English. Exclusion criteria were palliative sedation in children, acute illness, procedural, or burns, and predominantly ethical discussions. Guidelines were published by American College of Physicians-American Society of Internal Medicine (2000), Hospice and Palliative Nurses Association (2003), American Academy of Hospice and Palliative Medicine (2006), American Medical Association (2008), Royal Dutch Medical Association (2009), European Association for Palliative Care (2009), National Hospice and Palliative Care Organization (2010), and National Comprehensive Cancer Network (2012). Variances throughout guidelines include definitions of the practice, indications for its use, continuation of life-prolonging therapies, medications used, and timing/prognosis. The development and implementation of institutional-based guidelines with clear stance on the discussed variances is necessary for consistency in practice. Data on provision of palliative sedation after implementation of guidelines needs to be collected and disseminated for a better understanding of the current practice in the United States. © The Author(s) 2014.

Factors supporting good partnership working between generalist and specialist palliative care services: a systematic review.

PubMed

Gardiner, Clare; Gott, Merryn; Ingleton, Christine

2012-05-01

The care that most people receive at the end of their lives is provided not by specialist palliative care professionals but by generalists such as GPs, district nurses and others who have not undertaken specialist training in palliative care. A key focus of recent UK policy is improving partnership working across the spectrum of palliative care provision. However there is little evidence to suggest factors which support collaborative working between specialist and generalist palliative care providers. To explore factors that support partnership working between specialist and generalist palliative care providers. Systematic review. A systematic review of studies relating to partnership working between specialist and generalist palliative care providers was undertaken. Six electronic databases were searched for papers published up until January 2011. Of the 159 articles initially identified, 22 papers met the criteria for inclusion. Factors supporting good partnership working included: good communication between providers; clear definition of roles and responsibilities; opportunities for shared learning and education; appropriate and timely access to specialist palliative care services; and coordinated care. Multiple examples exist of good partnership working between specialist and generalist providers; however, there is little consistency regarding how models of collaborative working are developed, and which models are most effective. Little is known about the direct impact of collaborative working on patient outcomes. Further research is required to gain the direct perspectives of health professionals and patients regarding collaborative working in palliative care, and to develop appropriate and cost-effective models for partnership working.

Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

PubMed Central

Wiener, Lori; Weaver, Meaghann Shaw; Bell, Cynthia J; Sansom-Daly, Ursula M

2015-01-01

Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA's quality of life as end of life nears. PMID:25750863

Palliative and End-of-Life Care Education Needs of Nurses Across Inpatient Care Settings.

PubMed

Price, Deborah M; Strodtman, Linda; Montagnini, Marcos; Smith, Heather M; Miller, Jillian; Zybert, Jennifer; Oldfield, Justin; Policht, Tyler; Ghosh, Bidisha

2017-07-01

Educating nurses about palliative and end-of-life (EOL) care is a high priority in health care settings. The purpose of this study was to assess nurses' perceived competency regarding the provision of palliative and EOL care to hospitalized patients. This study surveyed nurses from 25 pediatric and adult acute and intensive care units (ICU; N = 583) Quantitative data analysis was descriptive and correlational. Qualitative data analysis identified themes of participant concerns. Data analysis revealed that perceived competency in palliative and EOL care is significantly higher in the ICU nurses (p <.0001). Mean scores were significantly higher when nurses had more than 10 years of experience (p <.0001). Open-ended responses indicated concerns regarding improved communication behaviors, decision making, and facilitation of continuity of care. The results provide guidance for development of palliative and EOL care nursing education programs tailored to address specific unit needs according to staff characteristics, patient population focus of care, and acuity level of care. J Contin Educ Nurs. 2017;48(7):329-336. Copyright 2017, SLACK Incorporated.

Integration of legal aspects and human rights approach in palliative care delivery-the Nyeri Hospice model.

PubMed

Musyoki, David; Gichohi, Sarafina; Ritho, Johnson; Ali, Zipporah; Kinyanjui, Asaph; Muinga, Esther

2016-01-01

Palliative care is patient and family-centred care that optimises quality of life by anticipating, preventing, and treating suffering. Open Society Foundation public health program (2011) notes that people facing life-threatening illnesses are deeply vulnerable: often in severe physical pain, worried about death, incapacitation, or the fate of their loved ones. Legal issues can increase stress for patients and families and make coping harder, impacting on the quality of care. In the absence of a clear legal provision expressly recognising palliative care in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility, and delivery of palliative care services and commodities. In order to ensure positive outcomes from patients, their families, and providers, palliative care services should be prioritised by all and includes advocating for the integration of legal support into those services. Palliative care service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in palliative care will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality palliative care.

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

PubMed Central

Nafratilova, Mercy; Allenidekania, Allenidekania; Wanda, Dessie

2018-01-01

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

How do Australian palliative care nurses address existential and spiritual concerns? Facilitators, barriers and strategies.

PubMed

Keall, Robyn; Clayton, Josephine M; Butow, Phyllis

2014-11-01

To investigate the facilitators, barriers and strategies that Australian palliative care nurses identify in providing existential and spiritual care for patients with life-limiting illnesses. Palliative care aims to be holistic, incorporating all domains of personhood, but spiritual/existential domain issues are often undertreated. Lack of time and skills and concerns for what you may uncover hamper care provision. A qualitative study through semistructured interviews. We interviewed 20 palliative care nurses from a cross section of area of work, place of work, years of experience, spiritual beliefs and importance of those beliefs within their lives. Questions focused on their current practices of existential and spiritual care, identification of facilitators of, barriers to and strategies for provision of that care. Their responses were transcribed and subjected to thematic analysis. The nurses' interviews yielded several themes including development of the nurse-patient relationship (14/20 nurses), good communication skills and examples of questions they use to 'create openings' to facilitate care. Barriers were identified as follows: lack of time (11/20 nurses), skills, privacy and fear of what you may uncover, unresolved symptoms and differences in culture or belief. Novel to our study, the nurses offered strategies that included the following: undertaking further education in this area, being self-aware and ensuring the setting is conducive to in-depth conversations and interactions and documentation and/or interdisciplinary sharing for continuity of care. Palliative care nurses are well placed to provide existential and spiritual care to patients with the primary facilitator being the nurse-patient relationship, the primary barrier being lack of time and the primary strategy being undertaking further education in this area. These findings could be used for nurse-support programmes, undergraduate or graduate studies or communication workshop for nurses.

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

PubMed Central

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

2017-01-01

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

A framework for complexity in palliative care: A qualitative study with patients, family carers and professionals.

PubMed

Pask, Sophie; Pinto, Cathryn; Bristowe, Katherine; van Vliet, Liesbeth; Nicholson, Caroline; Evans, Catherine J; George, Rob; Bailey, Katharine; Davies, Joanna M; Guo, Ping; Daveson, Barbara A; Higginson, Irene J; Murtagh, Fliss Em

2018-06-01

Palliative care patients are often described as complex but evidence on complexity is limited. We need to understand complexity, including at individual patient-level, to define specialist palliative care, characterise palliative care populations and meaningfully compare interventions/outcomes. To explore palliative care stakeholders' views on what makes a patient more or less complex and insights on capturing complexity at patient-level. In-depth qualitative interviews, analysed using Framework analysis. Semi-structured interviews across six UK centres with patients, family, professionals, managers and senior leads, purposively sampled by experience, background, location and setting (hospital, hospice and community). 65 participants provided an understanding of complexity, which extended far beyond the commonly used physical, psychological, social and spiritual domains. Complexity included how patients interact with family/professionals, how services' respond to needs and societal perspectives on care. 'Pre-existing', 'cumulative' and 'invisible' complexity are further important dimensions to delivering effective palliative and end-of-life care. The dynamic nature of illness and needs over time was also profoundly influential. Adapting Bronfenbrenner's Ecological Systems Theory, we categorised findings into the microsystem (person, needs and characteristics), chronosystem (dynamic influences of time), mesosystem (interactions with family/health professionals), exosystem (palliative care services/systems) and macrosystem (societal influences). Stakeholders found it acceptable to capture complexity at the patient-level, with perceived benefits for improving palliative care resource allocation. Our conceptual framework encompasses additional elements beyond physical, psychological, social and spiritual domains and advances systematic understanding of complexity within the context of palliative care. This framework helps capture patient-level complexity and target resource provision in specialist palliative care.

The practice of pilgrimage in palliative care: a case study of Lourdes.

PubMed

Lillie, Alison Kate

2005-05-01

To understand why healthcare professionals working in palliative care felt that pilgrimage to Lourdes could be a beneficial activity for the terminally ill. A qualitative study using a phenomenological framework. Nine semistructured interviews with a purposive sample of hospice staff. The reasons given for accompanying the terminally ill to Lourdes reflected the general aims of palliative care. They included improving the quality of life through the provision of a holiday, maintaining patient choice and autonomy and enabling inner-transformations. The communitas, or altered relationships, formed during the pilgrimage were also seen as beneficial.

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

PubMed

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

2018-05-26

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

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

PubMed

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

2018-05-01

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

Health care Professionals' Experiences and Needs When Delivering End-of-Life Care to Children: A Qualitative Study.

PubMed

Bergsträsser, Eva; Cignacco, Eva; Luck, Patricia

2017-01-01

Pediatric end-of-life care (EOL care) entails challenging tasks for health care professionals (HCPs). Little is known about HCPs' experiences and needs when providing pediatric EOL care in Switzerland. This study aimed to describe the experiences and needs of HCPs in pediatric EOL care in Switzerland and to develop recommendations for the health ministry. The key aspect in EOL care provision was identified as the capacity to establish a relationship with the dying child and the family. Barriers to this interaction were ethical dilemmas, problems in collaboration with the interprofessional team, and structural problems on the level of organizations. A major need was the expansion of vocational training and support by specialized palliative care teams. We recommend the development of a national concept for the provision of EOL care in children, accompanied by training programs and supported by specialized pediatric palliative care teams located in tertiary children's hospitals.

Among neighbors: an ethnographic account of responsibilities in rural palliative care.

PubMed

Pesut, Barbara; Robinson, Carole A; Bottorff, Joan L

2014-04-01

Building high quality palliative care in rural areas must take into account the cultural dimensions of the rural context. The purpose of this qualitative study was to conduct an exploration of rural palliative care, with a particular focus on the responsibilities that support good palliative care from rural participants' perspectives. This ethnographic study was conducted in four rural communities in Western Canada between June 2009 and September 2010. Data included 51 days of field work, 95 semistructured interviews, and 74 hours of direct participant observation. Thematic analysis was used to provide a descriptive account of rural palliative care responsibilities. Findings focus on the complex web of responsibilities involving family, healthcare professionals, and administrators. Family practices of responsibility included provision of direct care, managing and coordinating care, and advocacy. Healthcare professional practices of responsibility consisted of interpreting their own competency in relation to palliative care, negotiating their role in relation to that interpretation, and individualizing care through a bureaucratic system. Administrators had three primary responsibilities in relation to palliative care delivery in their community: navigating the politics of palliative care, understanding the culture of the community, and communicating with the community. Findings provide important insights into the complex ways rurality influences understandings of responsibility in palliative care. Families, healthcare providers, and administrators work together in fluid ways to support high quality palliative care in their communities. However, the very fluidity of these responsibilities can also work against high quality care, and are easily disrupted by healthcare changes. Proposed healthcare policy and practice changes, particularly those that originate from outside of the community, should undergo a careful analysis of their potential impact on the longstanding negotiated responsibilities.

What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review.

PubMed

Gardiner, Clare; Ingleton, Christine; Ryan, Tony; Ward, Sue; Gott, Merryn

2017-04-01

It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies.

Managing expectations: Providing palliative care in aged care facilities.

PubMed

Lane, Heather; Philip, Jennifer

2015-06-01

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.

Palliative Care and Cardiovascular Disease and Stroke: A Policy Statement From the American Heart Association/American Stroke Association.

PubMed

Braun, Lynne T; Grady, Kathleen L; Kutner, Jean S; Adler, Eric; Berlinger, Nancy; Boss, Renee; Butler, Javed; Enguidanos, Susan; Friebert, Sarah; Gardner, Timothy J; Higgins, Phil; Holloway, Robert; Konig, Madeleine; Meier, Diane; Morrissey, Mary Beth; Quest, Tammie E; Wiegand, Debra L; Coombs-Lee, Barbara; Fitchett, George; Gupta, Charu; Roach, William H

2016-09-13

The mission of the American Heart Association/American Stroke Association includes increasing access to high-quality, evidence-based care that improves patient outcomes such as health-related quality of life and is consistent with the patients' values, preferences, and goals. Awareness of and access to palliative care interventions align with the American Heart Association/American Stroke Association mission. The purposes of this policy statement are to provide background on the importance of palliative care as it pertains to patients with advanced cardiovascular disease and stroke and their families and to make recommendations for policy decisions. Palliative care, defined as patient- and family-centered care that optimizes health-related quality of life by anticipating, preventing, and treating suffering, should be integrated into the care of all patients with advanced cardiovascular disease and stroke early in the disease trajectory. Palliative care focuses on communication, shared decision making about treatment options, advance care planning, and attention to physical, emotional, spiritual, and psychological distress with inclusion of the patient's family and care system. Our policy recommendations address the following: reimbursement for comprehensive delivery of palliative care services for patients with advanced cardiovascular disease and stroke; strong payer-provider relationships that involve data sharing to identify patients in need of palliative care, identification of better care and payment models, and establishment of quality standards and outcome measurements; healthcare system policies for the provision of comprehensive palliative care services during hospitalization, including goals of care, treatment decisions, needs of family caregivers, and transition to other care settings; and health professional education in palliative care as part of licensure requirements. © 2016 American Heart Association, Inc.

The net effect: spanning diseases, crossing borders—highlights from the fourth triennial APCA conference and annual HPCA conference for palliative care

PubMed Central

Downing, J; Namisango, E; Kiyange, F; Luyirika, E; Gwyther, L; Enarson, S; Kampi, J; Sithole, Z; Kemigisha-Ssali, E; Masclee, M; Mukasa, I

2013-01-01

The African Palliative Care Association (APCA) jointly hosted its triennial palliative care conference for Africa with the Hospice and Palliative Care Association of South Africa (HPCA) on 17–20 September 2013 in Johannesburg, South Africa. At the heart of the conference stood a common commitment to see patient care improved across the continent. The theme for the conference, ‘The Net Effect: Spanning Diseases, Crossing Borders’, reflected this joint vision and the drive to remember the ‘net effect’ of our work in palliative care—that is, the ultimate impact of the care that we provide for our patients and their families across the disease and age spectrum and across the borders of African countries. The conference, held in Johannesburg, brought together 471 delegates from 34 countries. The key themes and messages from the conference are encapsulated in ten ‘C’s of commitment to political will and support at the highest levels of governance; engaging national, regional, and international bodies; collaboration; diversity; palliative care for children; planning for human resources and capacity building; palliative care integration at all levels; developing an evidence base for palliative care in Africa; using new technologies; and improved quality of care. Participants found the conference to be a forum that challenged their understanding of the topics presented, as well as enlightening in terms of applying best practice in their own context. Delegates found a renewed commitment and passion for palliative care and related health interventions for children and adults with life-limiting and life-threatening illnesses within the region. This conference highlighted many of the developments in palliative care in the region and served as a unique opportunity to bring people together and serve as a lynchpin for palliative care provision and development in Africa. The delegates were united in the fact that together we can ‘span diseases,’ ‘cross borders,’ and realise the ‘African Dream’ for palliative care. PMID:24222787

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

PubMed Central

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

2013-01-01

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

Nurses' experiences providing palliative care to individuals living in rural communities: aspects of the physical residential setting.

PubMed

Kaasalainen, S; Brazil, K; Williams, A; Wilson, D; Willison, K; Marshall, D; Taniguchi, A; Phillips, C

2014-01-01

Efforts are needed to improve palliative care in rural communities, given the unique characteristics and inherent challenges with respect to working within the physical aspects of residential settings. Nurses who work in rural communities play a key role in the delivery of palliative care services. Hence, the purpose of this study was to explore nurses' experiences of providing palliative care in rural communities, with a particular focus on the impact of the physical residential setting. This study was grounded in a qualitative approach utilizing an exploratory descriptive design. Individual telephone interviews were conducted with 21 community nurses. Data were analyzed by thematic content analysis. Nurses described the characteristics of working in a rural community and how it influences their perception of their role, highlighting the strong sense of community that exists but how system changes over the past decade have changed the way they provide care. They also described the key role that they play, which was often termed a 'jack of all trades', but focused on providing emotional, physical, and spiritual care while trying to manage many challenges related to transitioning and working with other healthcare providers. Finally, nurses described how the challenges of working within the physical constraints of a rural residential setting impeded their care provision to clients who are dying in the community, specifically related to the long distances that they travel while dealing with bad weather. These study findings contribute to our understanding of the experiences of nurses working in rural communities in terms of the provision of palliative care and the influence of the physical residential setting that surrounds them. These findings are important since nurses play a major role in caring for community-dwelling clients who are dying, but they are confronted with many obstacles. As such, these results may help inform future decisions about how to best improve access to important services and ways to support them while providing palliative care to rural individuals.

Barriers to Optimal Palliative Care of Lung Transplant Candidates

PubMed Central

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

2013-01-01

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

Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory.

PubMed

Beernaert, Kim; Haverbeke, Chloë; Van Belle, Simon; Deliens, Luc; Cohen, Joachim

2018-01-01

We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients. Cancer patients consulting a university hospital (N=620) filled out a questionnaire. Their cancer related data were collected through the treating oncologist. This study is performed in Belgium, where "palliative care for all" is a patient's right embedded in the law and euthanasia is possible under certain conditions. Around 80% received information about their illness course and treatments. Ten percent received information about palliative care and euthanasia. Most information about palliative care and euthanasia was given when the patient had a life expectancy of less than six months. However, a quarter of those in earlier phases in their illness trajectory, particularly those who experienced high pain, fatigue or nausea requested more information on these topics. Many patients want more information about palliative care and euthanasia than what is currently provided, also those in an earlier than terminal phase of their disease. Healthcare professionals should be more responsive, already from diagnosis, to the information needs about palliative care and possible end-of-life decisions. This should be patient-tailored, as some patients want more and some patients want less information. Copyright © 2017 Elsevier B.V. All rights reserved.

What cost components are relevant for economic evaluations of palliative care, and what approaches are used to measure these costs? A systematic review

PubMed Central

Gardiner, Clare; Ingleton, Christine; Ryan, Tony; Ward, Sue; Gott, Merryn

2016-01-01

Background: It is important to understand the costs of palliative and end-of-life care in order to inform decisions regarding cost allocation. However, economic research in palliative care is very limited and little is known about the range and extent of the costs that are involved in palliative care provision. Aim: To undertake a systematic review of the health and social care literature to determine the range of financial costs related to a palliative care approach and explore approaches used to measure these costs. Design: A systematic review of empirical literature with thematic synthesis. Study quality was evaluated using the Weight of Evidence Framework. Data sources: The databases CINAHL, Cochrane, PsycINFO and Medline were searched from 1995 to November 2015 for empirical studies which presented data on the financial costs associated with palliative care. Results: A total of 38 papers met our inclusion criteria. Components of palliative care costs were incurred within four broad domains: hospital care, community or home-based care, hospice care and informal care. These costs could be considered from the economic viewpoint of three providers: state or government, insurers/third-party/not-for-profit organisations and patient and family and/or society. A wide variety of costing approaches were used to derive costs. Conclusion: The evidence base regarding the economics of palliative care is sparse, particularly relating to the full economic costs of palliative care. Our review provides a framework for considering these costs from a variety of economic viewpoints; however, further research is required to develop and refine methodologies. PMID:27670418

Development of a practice tool for community-based nurses: the Heart Failure Palliative Approach to Care (HeFPAC).

PubMed

Strachan, Patricia H; Joy, Cathy; Costigan, Jeannine; Carter, Nancy

2014-04-01

Patients living with advanced heart failure (HF) require a palliative approach to reduce suffering. Nurses have described significant knowledge gaps about the disease-specific palliative care (PC) needs of these patients. An intervention is required to facilitate appropriate end-of-life care for HF patients. The purpose of this study was to develop a user-friendly, evidence-informed HF-specific practice tool for community-based nurses to facilitate care and communication regarding a palliative approach to HF care. Guided by the Knowledge to Action framework, we identified key HF-specific issues related to advanced HF care provision within the context of a palliative approach to care. Informed by current evidence and subsequent iterative consultation with community-based and specialist PC and HF nurses, a pocket guide tool for community-based nurses was created. We developed the Heart Failure Palliative Approach to Care (HeFPAC) pocket guide to promote communication and a palliative approach to care for HF patients. The HeFPAC has potential to improve the quality of care and experiences for patients with advanced HF. It will be piloted in community-based practice and in a continuing education program for nurses. The HeFPAC pocket guide offers PC nurses a concise, evidence-informed and practical point-of care tool to communicate with other clinicians and patients about key HF issues that are associated with improving disease-specific HF palliative care and the quality of life of patients and their families. Pilot testing will offer insight as to its utility and potential for modification for national and international use.

Necessary but not yet sufficient: a survey of aged residential care staff perceptions of palliative care communication, education and delivery.

PubMed

Frey, Rosemary; Boyd, Michal; Foster, Sue; Robinson, Jackie; Gott, Merryn

2016-12-01

Previous research has indicated that staff in aged residential care (ARC) may be unprepared for their role in palliative care provision. The need for palliative care knowledge among ARC staff has been characterised as 'pervasive'. Determining the palliative care education, communication and support needs of ARC clinical care staff is, therefore, of critical importance to the delivery of quality healthcare in this setting. A survey of clinical staff (n=431) in 52 ARC facilities in 1 urban district health board was conducted, using a paper-based questionnaire. Instruments included the 3-item Experiences with End of Life scale, developed measures of communication and support (13 items), support accessibility (12 items), and palliative care education (19 items). Only 199 (46.2%) of staff participants reported undertaking palliative care education. Nurses were more likely to have engaged in palliative care education in comparison with healthcare assistants (HCAs) (χ 2 (1, N=387)=18.10, p=0.00). Participants (n=347) who wanted further education preferred an interactive, hands-on applied education (13.9%) in comparison to short topic-specific sessions/seminars (6.5%) or lecture-based courses (7.7%). The study reveals an ongoing need for staff palliative care education. Results suggest the development of an integrated model of care which draws on both hospice and ARC staff expertise. 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/.

The ethics of withholding/withdrawing nutrition in the newborn.

PubMed

Carter, Brian S; Leuthner, Steven R

2003-12-01

The provision of nutrition and hydration to newborn infants is considered fundamental care. For premature and critically ill newborns, similar considerations generally hold true. Nutrition may be provided for these infants using assisted measures such as parenteral nutrition or tube feedings. However, for some newborn infants the provision of medically assisted nutrition may be a more complicated issue. In particular, the goals of nutrition need to be clearly elaborated for newborns with lethal conditions or for whom appropriately administered intensive care is unsuccessful in sustaining life. These infants may benefit from palliative measures of care and a limitation or withdrawal of burdensome or nonbeneficial interventions. This article explores issues pertinent to deciding and communicating the appropriate withdrawal of medically assisted nutrition and implementing palliative comfort measures.

Review of palliative sedation and its distinction from euthanasia and lethal injection.

PubMed

Hahn, Michael P

2012-01-01

Palliative sedation evolved from within the practice of palliative medicine and has become adopted by other areas of medicine, such as within intensive care practice. Clinician's usually come across this practice for dying patients who are foregoing or having life support terminated. A number of intolerable and intractable symptom burdens can occur during the end of life period that may require the use of palliative sedation. Furthermore, when patients receive palliative sedation, the continued use of hydration and nutrition becomes an issue of consideration and there are contentious bioethical issues involved in using or withholding these life-sustaining provisions. A general understanding of biomedical ethics helps prevent abuse in the practice of palliative sedation. Various sedative drugs can be employed in the provision of palliative sedation that can produce any desired effect, from light sedation to complete unconsciousness. Although there are some similarities in the pharmacotherapy of palliative sedation, euthanasia, physician-assisted suicide, and lethal injection, there is a difference in how the drugs are administered with each practice. There are some published guidelines about how palliative sedation should be practiced, but currently there is not any universally accepted standard of practice.

[Psychiatry and palliative care, collaboration for the benefit of the patient].

PubMed

Regard, Lionel

2018-01-01

As palliative care units continue to develop, the provision of end-of-life care for patients with a chronic mental illness needs to be addressed. Aside from the somatic comorbidities to which these patients are particularly exposed and in view of the specificity of psychiatric treatment, the forms of end-of-life support for a patient with schizophrenia are described here, based on the experience of a psychiatric unit in the Var region. Copyright © 2017 Elsevier Masson SAS. All rights reserved.

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

PubMed

Campbell, L M; Amin, N N

2014-01-01

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

What influences the willingness of community physicians to provide palliative care for patients with terminal cancer? Evidence from a nationwide survey.

PubMed

Peng, Jen-Kuei; Chiu, Tai-Yuan; Hu, Wen-Yu; Lin, Cheng-Chieh; Chen, Ching-Yu; Hung, Shou-Hung

2013-03-01

Community physicians have a vital role in delivering palliative care, yet their willingness and factors that influence its provision have rarely been explored. Our aims were to identify the willingness of community physicians to provide palliative care for patients with terminal cancer and to investigate the factors that influence their willingness to provide such care. Through a structured questionnaire, this nationwide study surveyed 708 community physicians who were potential pilots to provide palliative care. Four hundred and ten valid questionnaires (58.0%) were retrieved and analysed. The majority of respondents expressed a willingness (92.4%) to provide palliative care if they encountered patients with terminal cancer. However, they would limit their services to consultation (83.4%) and referral (86.8%), and were less likely to see patients and prescribe medicine (62.0%), to provide phone follow-ups (45.6%), to provide home visits (42.2%) or to offer bereavement care for the family (35.1%). The results of stepwise logistic regression analysis for the willingness to provide home visits showed that 'less perception of barriers', 'family medicine specialist' and 'older than 50 years' significantly predicted higher willingness, while 'female' predicted lower willingness. There was no significant association between the willingness and the knowledge score. Community physicians' beliefs and experience in palliative care rather than their knowledge influence their willingness to provide palliative care for patients with terminal cancer. Only through active participation in the real-world clinical setting and active health policy administration can community physicians overcome obstacles to providing palliative care.

Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: a comprehensive review.

PubMed

Shahid, Shaouli; Taylor, Emma V; Cheetham, Shelley; Woods, John A; Aoun, Samar M; Thompson, Sandra C

2018-05-08

Indigenous peoples in developed countries have reduced life expectancies, particularly from chronic diseases. The lack of access to and take up of palliative care services of Indigenous peoples is an ongoing concern. To examine and learn from published studies on provision of culturally safe palliative care service delivery to Indigenous people in Australia, New Zealand (NZ), Canada and the United States of America (USA); and to compare Indigenous peoples' preferences, needs, opportunities and barriers to palliative care. A comprehensive search of multiple databases was undertaken. Articles were included if they were published in English from 2000 onwards and related to palliative care service delivery for Indigenous populations; papers could use quantitative or qualitative approaches. Common themes were identified using thematic synthesis. Studies were evaluated using Daly's hierarchy of evidence-for-practice in qualitative research. Of 522 articles screened, 39 were eligible for inclusion. Despite diversity in Indigenous peoples' experiences across countries, some commonalities were noted in the preferences for palliative care of Indigenous people: to die close to or at home; involvement of family; and the integration of cultural practices. Barriers identified included inaccessibility, affordability, lack of awareness of services, perceptions of palliative care, and inappropriate services. Identified models attempted to address these gaps by adopting the following strategies: community engagement and ownership; flexibility in approach; continuing education and training; a whole-of-service approach; and local partnerships among multiple agencies. Better engagement with Indigenous clients, an increase in number of palliative care patients, improved outcomes, and understanding about palliative care by patients and their families were identified as positive achievements. The results provide a comprehensive overview of identified effective practices with regards to palliative care delivered to Indigenous populations to guide future program developments in this field. Further research is required to explore the palliative care needs and experiences of Indigenous people living in urban areas.

Learning from each other: cross-cultural insights on palliative care in Indian and Australian regions.

PubMed

McGrath, Pam; Holewa, Hamish; Koilparampil, Thomas; Koshy, Cherian; George, Shobha

2009-10-01

This article presents the findings of a cross-cultural research project that explored similarities and differences between palliative care service provision in Kerala, India and South-East Queensland, Australia, to inform a process of mutual learning for service development. Three major points of difference that can inform this process of mutual learning were identified: 1) an understanding of the significance of honesty in information-giving to the patient, 2) recognition of the importance of palliative care specialists providing education to mainstream health professionals, and 3) appreciation of the need for palliative care to be cognizant of the socio-economic impact of dying-especially for families experiencing poverty-by embracing strategies for financial and material support. The findings highlight the effectiveness of a cross-cultural collaboration between health professionals and researchers in South-East Queensland, Australia and Kerala, India.

What do we know about different models of providing palliative care? Findings from a systematic review of reviews.

PubMed

Brereton, Louise; Clark, Joseph; Ingleton, Christine; Gardiner, Clare; Preston, Louise; Ryan, Tony; Goyder, Elizabeth

2017-10-01

A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. To identify the existing range of models of palliative care that have been evaluated, what is already known and what further information is essential if the most effective and cost-effective models are to be identified and replicated more widely. A review of systematic and narrative reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library, Web of Science and ASSIA were searched for reviews about models of service provision from 2000 to 2014 and supplemented with Google searches of the grey literature. Much of the evidence relates to home-based palliative care, although some models are delivered across care settings. Reviews report several potential advantages and few disadvantages of models of palliative care delivery. However, under-reporting of the components of intervention and comparator models are major barriers to the evaluation and implementation of models of palliative care. Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential in order to understand the key components and successfully replicate effective organisational models.

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

PubMed

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

2018-06-01

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

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

PubMed Central

Brueckner, Torben; Schumacher, Martin; Schneider, Nils

2009-01-01

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

International Children's Palliative Care Network: A Global Action Network for Children With Life-Limiting Conditions.

PubMed

Marston, Joan; Boucher, Sue; Downing, Julia

2018-02-01

The International Children's Palliative Care Network (ICPCN) is a global network of individuals and organizations working together to reach the estimated 21 million children with life-limiting conditions and life-threatening illnesses. The drive to establish the ICPCN was born from the recognition of the gaps in service provision for children's palliative care and the need to collaborate, network, and share resources. Established in 2005 during a meeting in Seoul, South Korea, the ICPCN has developed over the years into an established network with a global membership. The history of the organization is described, including some of the key events since its inception. Working in collaboration with others, ICPCN has five key focus areas: Communication; Advocacy; Research; Education; and Strategic development, and is the only international charity working globally for the rights of children with palliative care needs. Activities in these areas are discussed, along with the inter-connection between the five areas. Without the ICPCN, palliative care for children would not have developed as far as it has over the years and the organization is committed to ongoing work in this area until all children requiring palliative care have access to quality services, wherever they live around the world. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

General practice and specialist palliative care teams: an exploration of their working relationship from the perspective of clinical staff working in New Zealand.

PubMed

Keane, Barry; Bellamy, Gary; Gott, Merryn

2017-01-01

With the future focus on palliative and end-of-life care provision in the community, the role of the general practice team and their relationship with specialist palliative care providers is key to responding effectively to the projected increase in palliative care need. Studies have highlighted the potential to improve co-ordination and minimise fragmentation of care for people living with palliative care need through a partnership between generalist services and specialist palliative care. However, to date, the exact nature of this partnership approach has not been well defined and debate exists about how to make such partnerships work successfully. The aim of this study was to explore how general practice and specialist palliative care team (SPCT) members view their relationship in terms of partnership working. Five focus group discussions with general practices and SPCT members (n = 35) were conducted in 2012 in two different regions of New Zealand and analysed using a general inductive approach. The findings indicate that participants' understanding of partnership working was informed by their identity as a generalist or specialist, their existing rules of engagement and the approach they took towards sustaining the partnership. Considerable commitment to partnership working was shown by all participating teams. However, their working relationship was based primarily on trust and personal liaison, with limited formal systems in place to enable partnership working. Tensions between the cultures of 'generalism' and 'specialism' also provided challenges for those endeavouring to meet palliative care need collaboratively in the community. Further research is required to better understand the factors associated with successful partnership working between general practices and specialist palliative care in order to develop robust strategies to support a more sustainable model of community palliative care. © 2015 John Wiley & Sons Ltd.

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

PubMed

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

2005-08-01

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

Palliative care needs of terminally ill people living alone: a service provider perspective.

PubMed

Aoun, Samar M; Wall, David; Kristjanson, Linda J; Shahid, Shaouli

2013-01-01

Community-based palliative care services face challenges in meeting the needs of terminally ill clients who live alone without a primary caregiver. Yet, there is a dearth of literature on the perceptions of health service providers (HSPs) regarding the care needs and possible management options to assist this growing group to remain at home. This paper investigated the support needs of people living alone with a terminal illness from a service provider perspective. In depth semi-structured interviews were conducted with nine HSPs from community based services in three Australian states. Four main themes emerged: care challenges, differences in care provision, appropriate approaches to care and essentials for an effective service such as 24 h care, cost-free provision of personal alarm systems, supported and coordinated housekeeping services, funded respite care and financial care packages. HSPs expressed a respect for the autonomy and independence of the clients, yet felt pressured to ensure that safe and attentive care was possible. HSPs recognised the central importance of maintaining the independence and autonomy of palliative care clients living alone. This study is the first in-depth account of what HSPs perceive they need to effectively look after home alone dying clients. The study provided directions to inform service planning for this growing and challenging population group regarding adequate and timely services that will lead to more complying with the clients' wishes, more care being delivered at home, a reduction in hospitalisations, a better quality of life and a capacity to die at home.

How to measure the international development of palliative care? A critique and discussion of current approaches.

PubMed

Loucka, Martin; Payne, Sheila; Brearley, Sarah

2014-01-01

A number of research projects have been conducted that aim to gather data on the international development of palliative care. These data are important for policy makers and palliative care advocates. The aim of this article was to provide a critical comparative analysis of methodological approaches used to assess the development and status of palliative care services and infrastructure at an international level. A selective literature review that focused on the methodological features of eight identified reports was undertaken. Reviewed reports were found to differ in adopted methodologies and provided uneven amounts of methodological information. Five major methodological limitations were identified (lack of theory, use of experts as source of information, grey literature, difficulties in ranking, and the problematic nature of data on service provision). A set of recommendations on how to deal with these issues in future research is provided. Measuring the international development of palliative care is a difficult and challenging task. The results of this study could be used to improve the validity of future research in this field. Copyright © 2014 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

Palliative care for patients with cancer: do patients receive the care they consider important? A survey study.

PubMed

Heins, Marianne; Hofstede, Jolien; Rijken, Mieke; Korevaar, Joke; Donker, Gé; Francke, Anneke

2018-04-17

In many countries, GPs and home care nurses are involved in care for patients with advanced cancer. Given the varied and complex needs of these patients, providing satisfactory care is a major challenge for them. We therefore aimed to study which aspects of care patients, GPs and home care nurses consider important and whether patients receive these aspects. Seventy-two Dutch patients with advanced cancer, 87 GPs and 26 home care nurses rated the importance of support when experiencing symptoms, respect for patients' autonomy and information provision. Patients also rated whether they received these aspects. Questionnaires were based on the CQ index palliative care. Almost all patients rated information provision and respect for their autonomy as important. The majority also rated support when suffering from specific symptoms as important, especially support when in pain. In general, patients received the care they considered important. However, 49% of those who considered it important to receive support when suffering from fatigue and 23% of those who wanted to receive information on the expected course of their illness did not receive this or only did so sometimes. For most patients with advanced cancer, the palliative care that they receive matches what they consider important. Support for patients experiencing fatigue may need more attention. When symptoms are difficult to control, GPs and nurses may still provide emotional support and practical advice. Furthermore, we recommend that GPs discuss patients' need for information about the expected course of their illness.

Palliative care experiences of adult cancer patients from ethnocultural groups: a qualitative systematic review protocol.

PubMed

Busolo, David; Woodgate, Roberta

2015-01-01

The objective of this review is to synthesize the best available evidence on palliative care experiences of adult cancer patients from ethnocultural groups.More specifically, this systematic review seeks to answer the following questions:1. What are the palliative care experiences of adult cancer patients from diverse ethnocultural groups?2. What meanings do adult patients with cancer from diverse ethnocultural groups assign to their experiences with palliative care? Globally, over 20.4 million people need palliative care services annually. The majority of these people (19 million) are adults, with 34% of them being patients diagnosed with cancer. With the current increase in the aging population, especially in developed countries, the number of adults requiring palliative care is expected to rise. Furthermore, how palliative care is offered and received continues to be shaped by culture and ethnicity. Likewise, culture and ethnicity influence how palliative care patients experience diseases like cancer, and seek and utilize palliative care services. Also, healthcare providers sometimes find it challenging to address the palliative care needs of patients from different ethnocultural groups. Sometimes these challenges are believed to be due to cultural incompetence of the care provider. When palliative care patients and their providers differ in their perception of care needs and how to address them, negative palliative care experiences are likely to ensue. Therefore, as the demand for palliative care increases, and ethnocultural factors continue to affect palliation, it is important to gain a better understanding of palliative care experiences of patients from different ethnocultural groups.The terms culture and ethnicity have been defined and used differently in literature which sometimes lead to confusion. Ethnicity has been defined as distinctive shared origins or social backgrounds and traditions of a group of people that are maintained between generations and bring about a sense of identity that may encompass a common language and religion. Ethnicity is fluid and should not be confused with nationality or migration or race. In this review, we define ethnicity in relation to the self-identification of participants in studies that will be included in the review.Culture refers to patterns of explanatory models, beliefs, values and customs. These patterns may be informed and expressed in things like diet, clothing or rituals, or in the form of language and social or political systems. Culture may be fluid because of developments in people's lives. In light of the aforementioned definitions, and recognizing the inconsistency in how these terms are sometimes used, the authors of this review define ethnocultural patients, as described in papers to be reviewed, as those who belong to an ethnic group by way of involvement, attachment, self-labelling or attitude towards the group, and who share cultural traditions, ancestry, language, nationality or country of origin.Palliative care in the context of cancer focuses on the improvement of the quality of life of patients by addressing their physical, emotional and spiritual needs, and by supporting their families. Palliative care is often associated with supportive and hospice care. Supportive care emphasizes meeting patients' needs such as physical, mental, social, psychological, emotional and material needs from the period before diagnosis, during diagnosis, treatment to the follow-up period in the cancer trajectory. Hospice care in the context of cancer aims to relieve patients' pain and suffering, and improve their quality of life. Hospice care includes palliative care services and other services such as case management, respite care and bereavement care. Hospice care focuses on patients with terminal illness (i.e. with expected survival of less than six months) and their families. Moreover, hospice care is facilitated by a multidisciplinary team of physicians, nurses, social workers, chaplains, home health aides and volunteers.Palliative care needs for cancer patients are numerous and may include needs related to activities of daily living, communication, sexuality, physical needs, psychological needs, fear, spiritual wellbeing, socioeconomic aspects and insufficiency of information. Cancer patients often report of suffering, pain and being in constant need of support. In dealing with their suffering, some patients seek internal motivation by looking at the disease as a life challenge. Other patients turn to external sources of motivation like religion, or peer and family support groups.Patients from different ethnocultural groups report similar as well as dissimilar palliative care needs and experiences. With respect to similarities, a study from the United States found that African American and Caucasian patients alike valued practical assistance from social groups. Participants from both ethnocultural groups valued friends and families that listened to their cancer-related concerns. Similarly, Turkish and Moroccan patients in a study conducted in Netherlands valued friends and family members that were there for them. Additionally, participants particularly of African American descent treasured positive attitudes from people around them and valued support from religion and faith communities. These sentiments are echoed in a palliative care study conducted in the United Kingdom. In the UK study, Caribbean Blacks and British White patients appreciated the significance of social networks and partner or spousal support in their cancer trajectory.In regards to unsupportive palliative care experiences, authors of the United States study report that African Americans and Caucasians had more similarities than differences. Firstly, both ethnocultural groups shared experiences of losing association with family and close friends after they learnt of the patients' diagnosis. These sentiments were also reported by Danish-born and immigrant patients in a study by Kristiansen and colleagues. Secondly, both African American and Caucasian patients felt responsible for the emotional wellbeing of their loved ones.When it comes to differences in palliative care needs and experiences, Grange and colleagues report that African American and Caucasian participants valued provision of housing which included daily patient care. Participants treasured the opportunity to either move or have family members move in and live with them. However, more African American than Caucasian participants had experiences of moving in with a family member. Important differences in unsupportive palliative care were also reported. Although both African Americans and Caucasians lost friends and family members following knowledge of the cancer diagnoses, more African Americans than Caucasians were likely to report losing friendship. Additionally, African Americans experienced diminished independence mainly because of overprotection from family and friends. Diminishing independence is echoed in the Dutch study involving Turkish and Moroccan patients. However, in the Dutch study, healthcare providers appeared to advocate for patients' independence which contradicted with the value placed by family members in protecting their loved one.In another American study, Latina women desired health-related information more often than their Caucasian American counterparts. The need for information by Latina women was irrespective of their socio-demographic factors, including level of education.The aforementioned similarities and differences in palliative care experiences call for further exploration of ethnocultural palliative care patients' experiences. A better understanding of their experiences will create avenues for finding better ways of providing palliative care, preventing psychological distress and improving quality of life and death.Understanding ethnocultural issues is important because the unique characteristics of ethnocultural groups often inform approaches to palliative care. Ethnocultural meanings of illness, suffering and dying define the theoretical underpinnings that patients and healthcare providers draw upon in their relations. Furthermore, Baker suggests that the provision and receipt of palliative care is more related to culture or ethnicity than to age, education, socioeconomic status or other variables. Moreover, culture affects communication, decision-making, response to symptoms, treatment choices and emotional expression at the end of life.Palliative care patients often regard recommendations from healthcare providers as very useful. Similarly, healthcare providers may find ethnocultural knowledge beneficial in the provision of palliative care. When ethnocultural knowledge is lacking, healthcare providers, especially those with minimal training on ethnocultural issues, may provide unsatisfactory palliative care. Similarly, when ethnocultural differences are overlooked or inadequately addressed, inferior care often occurs. Inferior care which may involve inequality in utilization of and access to palliative care services, pain and symptom management and location of death, is especially disturbing when adequate palliative care resources exist in some health institutions.Although qualitative and quantitative research has been conducted in this area, no systematic review compiling findings on ethnocultural patients' experiences of palliative care has been conducted or is underway as per the Joanna Briggs Institute Database of Systematic Reviews and Implementation Reports, Cochrane Database of Systematic Reviews or PROSPERO. The purpose of this systematic review is to summarize findings of qualitative studies that focus on ethnocultural patients' experience of palliative care. (ABSTRACT TRUNCATED)

Public health approaches to end-of-life care in the UK: an online survey of palliative care services.

PubMed

Paul, Sally; Sallnow, Libby

2013-06-01

The public health approach to end-of-life care has gained recognition over the past decade regarding its contribution to palliative care services. Terms, such as health-promoting palliative care, and compassionate communities, have entered the discourse of palliative care and practice; examples exist in the UK and globally. This scoping study aimed to determine if such initiatives were priorities for hospices in the UK and, if so, provide baseline data on the types of initiatives undertaken. An online survey was designed, piloted and emailed to 220 palliative care providers across the four UK countries. It included a total of six questions. Quantitative data were analysed using descriptive statistics. Qualitative data were analysed thematically. There was a 66% response rate. Of those providers, 60% indicated that public health approaches to death, dying and loss were a current priority for their organisation. Respondents identified a range of work being undertaken currently in this area. The most successful were felt to be working with schools and working directly with local community groups. The findings demonstrate the relevance of a public health approach for palliative care services and how they are currently engaging with the communities they serve. Although the approach was endorsed by the majority of respondents, various challenges were highlighted. These related to the need to balance this against service provision, and the need for more training and resources to support these initiatives, at both national and community levels.

European Society for Medical Oncology (ESMO) position paper on supportive and palliative care.

PubMed

Jordan, K; Aapro, M; Kaasa, S; Ripamonti, C I; Scotté, F; Strasser, F; Young, A; Bruera, E; Herrstedt, J; Keefe, D; Laird, B; Walsh, D; Douillard, J Y; Cervantes, A

2018-01-01

Oncology has come a long way in addressing patients' quality of life, together with developing surgical, radio-oncological and medical anticancer therapies. However, the multiple and varying needs of patients are still not being met adequately as part of routine cancer care. Supportive and palliative care interventions should be integrated, dynamic, personalised and based on best evidence. They should start at the time of diagnosis and continue through to end-of-life or survivorship. ESMO is committed to excellence in all aspects of oncological care during the continuum of the cancer experience. Following the 2003 ESMO stand on supportive and palliative care (Cherny N, Catane R, Kosmidis P. ESMO takes a stand on supportive and palliative care. Ann Oncol 2003; 14(9): 1335-1337), this position paper highlights the evolving and growing gap between the needs of cancer patients and the actual provision of care. The concept of patient-centred cancer care is presented along with key requisites and areas for further work. © The Author 2017. Published by Oxford University Press on behalf of the European Society for Medical Oncology. All rights reserved. For Permissions, please email: journals.permissions@oup.com.

Moving toward quality palliative cancer care: parent and clinician perspectives on gaps between what matters and what is accessible.

PubMed

Kassam, Alisha; Skiadaresis, Julia; Habib, Sharifa; Alexander, Sarah; Wolfe, Joanne

2013-03-01

The National Consensus Project (NCP) published a set of standards for quality palliative care delivery. A key step before applying these guidelines to pediatric oncology is to evaluate how much families and clinicians value these standards. We aimed to determine which elements of palliative care are considered important according to bereaved parents and pediatric oncology clinicians and to determine accessibility of these elements. We administered questionnaires to 75 bereaved parents (response rate, 54%) and 48 pediatric oncology clinicians (response rate, 91%) at a large teaching hospital. Outcome measures included importance ratings and accessibility of core elements of palliative care delivery. Fifteen of 20 core elements were highly valued by both parents and clinicians (defined as > 60% of parents and clinicians reporting the item as important). Compared with clinicians, parents gave higher ratings to receiving cancer-directed therapy during the last month of life (P < .01) and involvement of a spiritual mentor (P = .03). Of the valued elements, only three were accessible more than 60% of the time according to clinicians and parents. Valued elements least likely to be accessible included a direct admission policy to hospital, sibling support, and parent preparation for medical aspects surrounding death. Parents and clinicians highly value a majority of palliative care elements described in the NCP framework. Children with advanced cancer may not be receiving key elements of palliative care despite parents and clinicians recognizing them as important. Evaluation of barriers to provision of quality palliative care and strategies for overcoming them are critical.

The state of mHealth development and use by palliative care services in sub-Saharan Africa: a systematic review of the literature.

PubMed

Allsop, Matthew J; Powell, Richard A; Namisango, Eve

2018-06-01

Current coverage of palliative care services in sub-Saharan Africa (SSA) remains woefully inadequate, but harnessing mHealth could be one approach to facilitate greater service coverage and engagement with patients with life-limiting progressive disease. A systematic literature review to identify the development and use of mHealth in palliative care services in SSA. 13 electronic databases from 1990 to 2015 were searched alongside the manual searching of journals and citation searching of included article reference lists. Articles were assessed against inclusion and exclusion criteria and study details extracted and tabulated by two researchers. Studies were plotted against a modified WHO mHealth and ICT framework to classify how they are targeting health system strengthening. Of the 1110 articles identified, 5 met the inclusion criteria, describing mHealth use in Nigeria, Uganda, Kenya and Malawi. Descriptive analysis has shown that existing mHealth interventions for palliative care services in SSA are limited in number and are being developed for use at the palliative treatment, guidance and coordination stage of care provision. Levels of detail about the development and structure of interventions are low. mHealth interventions for palliative care in SSA are limited. This is an opportune time to explore how evidence-based mHealth interventions could form part of the evolving palliative care services in the 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/.

Top 10 Tips for Using Advance Care Planning Codes in Palliative Medicine and Beyond.

PubMed

Jones, Christopher A; Acevedo, Jean; Bull, Janet; Kamal, Arif H

2016-12-01

Although recommended for all persons with serious illness, advance care planning (ACP) has historically been a charitable clinical service. Inadequate or unreliable provisions for reimbursement, among other barriers, have spurred a gap between the evidence demonstrating the importance of timely ACP and recognition by payers for its delivery. 1 For the first time, healthcare is experiencing a dramatic shift in billing codes that support increased care management and care coordination. ACP, chronic care management, and transitional care management codes are examples of this newer recognition of the value of these types of services. ACP discussions are an integral component of comprehensive, high-quality palliative care delivery. The advent of reimbursement mechanisms to recognize these services has an enormous potential to impact palliative care program sustainability and growth. In this article, we highlight 10 tips to effectively using the new ACP codes reimbursable under Medicare. The importance of documentation, proper billing, and nuances regarding coding is addressed.

Top 10 Tips for Using Advance Care Planning Codes in Palliative Medicine and Beyond

PubMed Central

Acevedo, Jean; Bull, Janet; Kamal, Arif H.

2016-01-01

Abstract Although recommended for all persons with serious illness, advance care planning (ACP) has historically been a charitable clinical service. Inadequate or unreliable provisions for reimbursement, among other barriers, have spurred a gap between the evidence demonstrating the importance of timely ACP and recognition by payers for its delivery.1 For the first time, healthcare is experiencing a dramatic shift in billing codes that support increased care management and care coordination. ACP, chronic care management, and transitional care management codes are examples of this newer recognition of the value of these types of services. ACP discussions are an integral component of comprehensive, high-quality palliative care delivery. The advent of reimbursement mechanisms to recognize these services has an enormous potential to impact palliative care program sustainability and growth. In this article, we highlight 10 tips to effectively using the new ACP codes reimbursable under Medicare. The importance of documentation, proper billing, and nuances regarding coding is addressed. PMID:27682147

Enabling occupation at the end of life: A literature review.

PubMed

Mills, Katherine; Payne, Angela

2015-12-01

Occupation, or meaningful activity, can contribute to the well-being and quality of life of all individuals. It is thus a logical tautology that occupation should be enabled for those at the end of life. Our present review examines current provision of these processes by Occupational Therapist, who can be much-valued members of multidisciplinary palliative care teams. Following a literature search and critical selection, 10 global papers were identified examining occupation and occupational therapy at the end of life in the acute, hospice, and community environments. Universally, there appeared to be a dearth of therapists working in end-of-life care. Provision of palliative care in hospitals was found to be compensatory or rehabilitative. Hospice therapy emerged as pleasingly occupational, though the number of hospice places was disappointingly few. Community literature was sparse, so it proved challenging to draw definitive conclusions. Promising research refracted light on occupation at home; however, it also revealed stretched domiciliary services, where clients are not well informed about the potential scope of occupational therapy. A "good death" involving a quality end-of-life experience is the foundational goal overarching all therapy and medicine in the provision of palliative care. Arguably, an occupation-focused approach provided by therapists meets client needs to enable meaningful experiences in the limited time left to them. Current occupational therapy practice environments are not necessarily achieving these goals in commensurate fashion. There is a need to promote the role of occupational therapy and circumscribe what therapists can offer. Further research is necessitated across all environments and future funding for therapist positions in palliative teams. End-of-life care can be complex and challenging; however, therapists can facilitate fulfillment of client-centered occupational goals. In engaging with personally constructed nuances of meaning, quality of life can be improved in those deserving of a significant and emotionally rich daily existence during their final days.

Pain relief, spiritual needs, and family support: three central areas in intercultural palliative care.

PubMed

Hanssen, Ingrid; Pedersen, Gry

2013-12-01

The purpose of this study was to draw out and coalesce the topic-specific information found in research literature regarding the provision of culturally sensitive palliative practice. This was a literature study and Gadamerian hermeneutic text analysis. It is more difficult to assess the level of pain in ethnic minority patients, and healthcare providers may become frustrated and interpret pain symptoms as fabrication. These patients are more likely to receive inadequate pain medication. Physical symptom management has become the priority in palliative care, but pain must also be viewed from the perspective of its social, cultural, and spiritual significance. Collectivist values may lead to an other-reliant and dependent coping style. This and religious demands may cause the family to rally around the patient. Many dying patients wish to be cared for at home by their families, but as the patient often has complex needs, the family may not be able to cope with the patient's care. Formal education and in-service programs are needed for healthcare providers, together with empirical studies regarding how to achieve more culturally appropriate care in intercultural palliative practice. The immigrant population needs to be educated about cancer and the various kinds of palliative and hospice care offered in the society in which they now live.

Companion animals and well-being in palliative care nursing: a literature review.

PubMed

MacDonald, Julie M; Barrett, David

2016-02-01

To evaluate and critique current knowledge regarding the role of animals in palliative care. To explore the impact that animals may have on the well-being of individuals and to identify gaps in the evidence base. There is recognition that having a companion animal will affect patient experience. Similarly, there has been some previous exploration on the use of specific animal assisted therapies for patients with different healthcare needs. A literature review was conducted to identify published and unpublished research about companion animals or animal-assisted therapy in palliative and/or end-of-life care. The primary objective was to explore the impact of animals on well-being at the end of life. A search for literature was carried out using a variety of databases and different combinations of search terms linked to animals in palliative care. Included works were critically appraised and thematically analysed. A limited range of literature was identified. From the small number of studies included in the review (n = 4), it appears that there is some evidence of animals (either companion animals or those used specifically to enhance care) having a positive impact on the patient experience. This study suggests that animals play a large part in the lives of people receiving palliative care. Using animals to support care may also offer some benefits to the patient experience. However, there appears to be a dearth of high-quality literature in this area. More research is therefore required. Nurses providing palliative care need to be aware of the part that a companion animal may play in the life of patients. There may also be the opportunity for nurses in some settings to integrate animal therapy into their provision of palliative care. © 2015 John Wiley & Sons Ltd.

State of the Science of Spirituality and Palliative Care Research Part II: Screening, Assessment, and Interventions.

PubMed

Balboni, Tracy A; Fitchett, George; Handzo, George F; Johnson, Kimberly S; Koenig, Harold G; Pargament, Kenneth I; Puchalski, Christina M; Sinclair, Shane; Taylor, Elizabeth J; Steinhauser, Karen E

2017-09-01

The State of the Science in Spirituality and Palliative Care was convened to address the current landscape of research at the intersection of spirituality and palliative care and to identify critical next steps to advance this field of inquiry. Part II of the SOS-SPC report addresses the state of extant research and identifies critical research priorities pertaining to the following questions: 1) How do we assess spirituality? 2) How do we intervene on spirituality in palliative care? And 3) How do we train health professionals to address spirituality in palliative care? Findings from this report point to the need for screening and assessment tools that are rigorously developed, clinically relevant, and adapted to a diversity of clinical and cultural settings. Chaplaincy research is needed to form professional spiritual care provision in a variety of settings, and outcomes assessed to ascertain impact on key patient, family, and clinical staff outcomes. Intervention research requires rigorous conceptualization and assessments. Intervention development must be attentive to clinical feasibility, incorporate perspectives and needs of patients, families, and clinicians, and be targeted to diverse populations with spiritual needs. Finally, spiritual care competencies for various clinical care team members should be refined. Reflecting those competencies, training curricula and evaluation tools should be developed, and the impact of education on patient, family, and clinician outcomes should be systematically assessed. Published by Elsevier Inc.

Public, patient and carers' views on palliative and end-of-life care in India.

PubMed

Ramasamy Venkatasalu, M; Sirala Jagadeesh, N; Elavally, S; Pappas, Y; Mhlanga, F; Pallipalayam Varatharajan, R

2018-06-01

To systematically review the existing evidence on the Indian public, patient and carers' perspectives on palliative and end-of-life care. With a growing population of terminally ill people across the world, there is also an increasing awareness among international health policy makers of the need to improve the quality of life for terminally ill patients. Understanding service users' (patients, family and public) perspectives is crucial in developing and sustaining successful community-centred palliative nursing policies and service models especially in countries like India with diverse population. An integrative review was performed on five databases, using hand searches of key journals and reference citation tracking for empirical studies published in English from 1990 to 2015. A thematic analysis framework was used to analyse and identify key themes. Analysis of the six eligible studies revealed five themes. Themes describe how social, economic, cultural, religious, spiritual and traditional factors influenced the palliative and end-of-life care perspectives and experiences among Indians. They also illustrated preferences relating to place of care, as well as benefits and challenges of family caregiving during the last days of life. Although we found minimal evidence on user perspectives, nurses need to aware of those unique components of context-specific palliative and end-of-life care practices in India - socioeconomic, cultural and religious factors - on their nursing encounters. Nurses need to advocate same in policy development to enable accessibility and utility of palliative and end-of-life care services, which are scant in India. Nurses can be central in gathering the contextual evidence that advocate users' perspectives to inform further studies and national palliative care policies in India. Emerging policies in nursing education need to focus on integrating family-centred palliative and end-of-life care within curricula, whereas nursing practice may promote nurse-led community models to address the patchy palliative and end-of-life service provision in India. © 2017 International Council of Nurses.

The Interdisciplinary Curriculum for Oncology Palliative Care Education (iCOPE): meeting the challenge of interprofessional education.

PubMed

Head, Barbara A; Schapmire, Tara; Hermann, Carla; Earnshaw, Lori; Faul, Anna; Jones, Carol; Kayser, Karen; Martin, Amy; Shaw, Monica Ann; Woggon, Frank; Pfeifer, Mark

2014-10-01

Background: Interprofessional education is necessary to prepare students of the health professions for successful practice in today's health care environment. Because of its expertise in interdisciplinary practice and team-based care, palliative care should be leading the way in creating educational opportunities for students to learn the skills for team practice and provision of quality patient-centered care. Multiple barriers exist that can discourage those desiring to create and implement truly interdisciplinary curriculum. An interdisciplinary faculty team planned and piloted a mandatory interdisciplinary palliative oncology curriculum and responded to formative feedback. The project took place at a large public metropolitan university. Medical, nursing, and social work students and chaplains completing a clinical pastoral education internship participated in the curriculum. Formative feedback was received via the consultation of an interdisciplinary group of palliative education experts, focus groups from students, and student evaluations of each learning modality. Multiple barriers were experienced and successfully addressed by the faculty team. Curricular components were redesigned based on formative feedback. Openness to this feedback coupled with flexibility and compromise enabled the faculty team to create an efficient, sustainable, and feasible interdisciplinary palliative oncology curriculum. Interdisciplinary palliative education can be successful if faculty teams are willing to confront challenges, accept feedback on multiple levels, and compromise while maintaining focus on desired learner outcomes.

Exploring the financial impact of caring for family members receiving palliative and end-of-life care: a systematic review of the literature.

PubMed

Gardiner, Clare; Brereton, Louise; Frey, Rosemary; Wilkinson-Meyers, Laura; Gott, Merryn

2014-05-01

Research regarding the economic dimensions of palliative care is relatively limited. The economic implications of providing informal care are well recognised; however, within the context of palliative care, little is known about the costs and implications of providing care for a loved one at the end of life. To explore the financial costs and the financial impact of caring for family members receiving palliative/end-of-life care. A systematic literature review of empirical research following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Seven electronic databases were searched from inception to April 2012. Inclusion criteria were as follows: articles relating to the financial costs or implications of family caregiving at the end-of-life care, English language articles, empirical research or systematic reviews and articles relating to adults. The review identified 21 relevant articles; however, evidence relating to the costs and implications of caregiving was relatively limited. The results indicate that the financial costs of caring for someone at the end of life are substantial. Financial costs can result in significant and multidimensional caregiver burden. Various factors were found to mediate the extent of financial burden. This review identified a significant gap in the evidence base regarding the economic implications of providing care to a family member within a palliative care context. Economic costs and implications are likely to be significant, and research to address this gap is urgently needed, particularly given policy initiatives in a number of developed countries to move the provision of palliative and end-of-life care from hospital to community settings.

Culturally and linguistically diverse palliative care patients' journeys at the end-of-life.

PubMed

Green, Anna; Jerzmanowska, Natalia; Thristiawati, Safrina; Green, Marguerite; Lobb, Elizabeth A

2018-06-04

To understand the clinical and psychosocial journey of culturally and linguistically diverse (CALD) palliative care patients. This study was conducted at a subacute hospital with a specialist palliative care unit and a community palliative care service in a metropolitan region of New South Wales, Australia. Medical records of 100 deceased patients from CALD backgrounds over a 12-month period from 2014 to 2015 were recorded on a data mining tool. The cohort had transitioned to either community or inpatient palliative care services with a life-limiting illness. We used descriptive statistical analyses to identify the patients' end-of-life journeys in the physical, psychological, spiritual, and social palliative care domains. Staff case notes were used to enrich the quantitative data.ResultThe most common symptoms burdening the patients were decreased mobility (82%), pain (76%), and poor appetite (60%). The majority of patients (87%) were diagnosed with cancer. Language was a major barrier to the assessment and management of symptoms. The vast majority of patients were born in Europe and Asia. Twenty-nine percent of the patients preferred to use English. However, among patients who required an interpreter on admission, only 9% used professional interpreters. Family distress around patients' lack of food consumption was prominent, along with provider concern when this led to families "force feeding" patients. Only 5% of files documented patients', and 21% of files documented families', cultural wishes or needs. Care of the body after death was only documented in 20% of files.Significance of resultsThe increasing cohort of older people from CALD backgrounds will have significant implications for the planning and delivery of palliative care services. There is an emerging need to address the physical, psychological, spiritual, and social palliative care domains in the end-of-life journeys of patients from CALD backgrounds to ensure the provision of quality care.

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

PubMed

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

2017-12-01

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

Barriers and facilitators to care for the terminally ill: a cross-country case comparison study of Canada, England, Germany, and the United States.

PubMed

Klinger, Christopher A; Howell, Doris; Zakus, David; Deber, Raisa B

2014-02-01

Why do many patients not die at their preferred location? Analyze system-level characteristics influencing the ability to implement best practices in delivering care for terminally ill adults (barriers and facilitators). Cross-country comparison study from a "most similar-most different" perspective, triangulating evidence from a scoping review of the literature, document analyses, and semi-structured key informant interviews. Case study of Canada, England, Germany, and the United States. While similar with regard to leading causes of death, patient needs, and potential avenues to care, different models of service provision were employed in the four countries studied. Although hospice and palliative care services were generally offered with standard care along the disease continuum and in various settings, and featured common elements such as physical, psycho-social, and spiritual care, outcomes (access, utilization, etc.) varied across jurisdictions. Barriers to best practice service provision included legislative (including jurisdictional), regulatory (e.g. education and training), and financial issues as well as public knowledge and perception ("giving up hope") challenges. Advance care planning, dedicated and stable funding toward hospice and palliative care, including caregiver benefits, population aging, and standards of practice and guidelines to hospice and palliative care, were identified as facilitators. Successful implementation of effective and efficient best practice approaches to care for the terminally ill, such as shared care, requires concerted action to align these system-level characteristics; many factors were identified as being essential but not sufficient. Policy implementation needs to be tailored to the respective health-care system(s), monitored, and fine-tuned.

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

PubMed

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

2018-05-29

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

Medical Students' Death Anxiety: Severity and Association With Psychological Health and Attitudes Toward Palliative Care.

PubMed

Thiemann, Pia; Quince, Thelma; Benson, John; Wood, Diana; Barclay, Stephen

2015-09-01

Death anxiety (DA) is related to awareness of the reality of dying and death and can be negatively related to a person's psychological health. Physicians' DA also may influence their care for patients approaching death. Doctors face death in a professional context for the first time at medical school, but knowledge about DA among medical students is limited. This study examined medical students' DA in relation to: 1) its severity, gender differences, and trajectory during medical education and 2) its associations with students' attitudes toward palliative care and their psychological health. Four cohorts of core science and four cohorts of clinical students at the University of Cambridge Medical School took part in a questionnaire survey with longitudinal follow-up. Students who provided data on the revised Collett-Lester Fear of Death Scale were included in the analysis (n = 790). Medical students' DA was moderate, with no gender differences and remained very stable over time. High DA was associated with higher depression and anxiety levels and greater concerns about the personal impact of providing palliative care. The associations between high DA and lower psychological health and negative attitudes toward palliative care are concerning. It is important to address DA during medical education to enhance student's psychological health and the quality of their future palliative care provision. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

[Nurses' perception, experience and knowledge of palliative care in intensive care units].

PubMed

Piedrafita-Susín, A B; Yoldi-Arzoz, E; Sánchez-Fernández, M; Zuazua-Ros, E; Vázquez-Calatayud, M

2015-01-01

Adequate provision of palliative care by nursing in intensive care units is essential to facilitate a "good death" to critically ill patients. To determine the perceptions, experiences and knowledge of intensive care nurses in caring for terminal patients. A literature review was conducted on the bases of Pubmed, Cinahl and PsicINFO data using as search terms: cuidados paliativos, UCI, percepciones, experiencias, conocimientos y enfermería and their alternatives in English (palliative care, ICU, perceptions, experiences, knowledge and nursing), and combined with AND and OR Boolean. Also, 3 journals in intensive care were reviewed. Twenty seven articles for review were selected, most of them qualitative studies (n=16). After analysis of the literature it has been identified that even though nurses perceive the need to respect the dignity of the patient, to provide care aimed to comfort and to encourage the inclusion of the family in patient care, there is a lack of knowledge of the end of life care in intensive care units' nurses. This review reveals that to achieve quality care at the end of life, is necessary to encourage the training of nurses in palliative care and foster their emotional support, to conduct an effective multidisciplinary work and the inclusion of nurses in decision making. Copyright © 2014 Elsevier España, S.L.U. y SEEIUC. All rights reserved.

Palliative care and other physicians' knowledge, attitudes and practice relating to the law on withholding/withdrawing life-sustaining treatment: Survey results.

PubMed

Cartwright, Colleen Maria; White, Ben P; Willmott, Lindy; Williams, Gail; Parker, Malcolm Holbrook

2016-02-01

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.

Patient perceptions of helpful communication in the context of advanced cancer.

PubMed

Stajduhar, Kelli I; Thorne, Sally E; McGuinness, Liza; Kim-Sing, Charmaine

2010-07-01

Based on a secondary analysis of data from a large qualitative study on cancer care communication, we address the question: what do patients with advanced cancer identify as helpful in their communication encounters with health care providers? Communication is of critical importance to the care of patients with advanced cancer. A better understanding of what such patients identify as helpful in their communication encounters with nurses and other health care providers seems critical to creating evidence-informed recommendations for best practices. Secondary analysis of qualitative interview data. Data from 18 participants interviewed individually and 16 focus group participants, with advanced cancer in the palliative phase of care. Interpretive description methodology informed data collection and analysis. Findings suggest four key elements are critically important to consider in communications with patients in an advanced or palliative phase - respecting the importance of time, demonstrating caring, acknowledging fear and balancing hope and honesty in the provision of information. Communication is an important element in the provision of advanced cancer care. Findings emphasise the complex meanings inherent in cancer care communication and identify central themes that are fundamental to effective cancer care communication. © 2010 The Authors. Journal compilation © 2010 Blackwell Publishing Ltd.

Duration and determinants of hospice-based specialist palliative care: A national retrospective cohort study.

PubMed

Allsop, Matthew J; Ziegler, Lucy E; Mulvey, Matthew R; Russell, Sarah; Taylor, Ros; Bennett, Michael I

2018-06-01

Understanding service provision for patients with advanced disease is a research priority, with a need to identify barriers that limit widespread integration of palliative care. To identify patient and organisational factors that influence the duration of hospice-based palliative care in the United Kingdom prior to death. This is a retrospective cohort study. A total of 64 UK hospices providing specialist palliative care inpatient beds and community services extracted data for all adult decedents (aged over 17 years) with progressive, advanced disease, with a prior referral (e.g. inpatient, community teams, and outpatient) who died between 1 January 2015 and 31 December 2015. Data were requested for factors relating to both the patient and hospice site. Across 42,758 decedents, the median time from referral to death was 48 days. Significant differences in referral to death days were found for those with cancer (53 days) and non-cancer (27 days) ( p < 0.0001). As age increases, the median days from referral to death decreases: for those under 50 years (78 days), 50-74 years (59 days), and 75 years and over (39 days) ( p = 0.0001). An adjusted multivariable negative binomial model demonstrated increasing age persisting as a significant predictor of fewer days of hospice care, as did being male, having a missing ethnicity classification and having a non-cancer diagnosis ( p < 0.001). Despite increasing rhetoric around early referral, patients with advanced disease are receiving referrals to hospice specialist palliative care very late in their illness trajectory. Age and diagnosis persist as determinants of duration of hospice specialist palliative care before death.

Palliative care in the home: a scoping review of study quality, primary outcomes, and thematic component analysis.

PubMed

Hofmeister, Mark; Memedovich, Ally; Dowsett, Laura E; Sevick, Laura; McCarron, Tamara; Spackman, Eldon; Stafinski, Tania; Menon, Devidas; Noseworthy, Tom; Clement, Fiona

2018-03-07

The aim of palliative care is to improve the quality of life of patients and families through the prevention and relief of suffering. Frequently, patients may choose to receive palliative care in the home. The objective of this paper is to summarize the quality and primary outcomes measured within the palliative care in the home literature. This will synthesize the current state of the literature and inform future work. A scoping review was completed using PRISMA guidelines. PubMed, Embase, CINAHL, Web of Science, Cochrane Library, EconLit, PsycINFO, Centre for Reviews and Dissemination, Database of Abstracts of Reviews of Effects, and National Health Service Economic Evaluation Database were searched from inception to August 2016. Inclusion criteria included: 1) care was provided in the "home of the patient" as defined by the study, 2) outcomes were reported, and 3) reported original data. Thematic component analysis was completed to categorize interventions. Fifty-three studies formed the final data set. The literature varied extensively. Five themes were identified: accessibility of healthcare, caregiver support, individualized patient centered care, multidisciplinary care provision, and quality improvement. Primary outcomes were resource use, symptom burden, quality of life, satisfaction, caregiver distress, place of death, cost analysis, or described experiences. The majority of studies were of moderate or unclear quality. There is robust literature of varying quality, assessing different components of palliative care in the home interventions, and measuring different outcomes. To be meaningful to patients, these interventions need to be consistently evaluated with outcomes that matter to patients. Future research could focus on reaching a consensus for outcomes to evaluate palliative care in the home interventions.

The development of funding policies for hospices: is casemix-based funding an option?

PubMed

Carter, H; MacLeod, R; Hicks, E; Carter, J

1999-06-25

The 1993 health reforms, with their emphasis on the purchasing of defined amounts or units of service, have led to the implementation of casemix-based funding for the acute medical and surgical services of the public hospitals. Despite growing interest in New Zealand in casemix-based funding for non-acute services such as palliative care, the nature of this service and the characteristics of its patient population pose particular difficulties for the development and implementation of casemix. This paper examines the feasibility of implementing casemix-based funding for hospice/palliative care services and discusses the development of casemix classification systems for palliative care. Problems associated with implementing casemix-based funding are considered including: the dual funding of hospices, the multi-agency nature of palliative care service provision and the need for the Health Funding Authority to identify and specify the hospice services it is willing to fund. While it is concluded that these problems will impede the introduction of casemix-based funding of hospice care, they highlight important issues that the hospice movement must address if it is to ensure its future within the new health environment.

Informing Severely III Patients: Needs, Shortcomings and Strategies for Improvement

PubMed Central

Strohbuecker, Barbara; Gaertner, Jan; Stock, Stephanie

2011-01-01

Summary The scope of palliative care has expanded gradually over the last decade. Provision of palliative care is not restricted to the last months of life as in some out-dated concepts. It addresses the needs of severely ill patients in all care settings (in- and outpatients, home care, hospices). Particularly in the last years, the value of integrating palliative care early in the disease trajectory of life-threatening and incurable diseases has become increasingly acknowledged. In order for patients to fully benefit from the concept of early integration of palliative care, they need to be provided with information tailored to their disease trajectory. For example, patients and relatives need to know how symptoms such as pain, depression, fatigue, breathlessness, or anxiety can be alleviated. The patients’ knowledge and understanding will support the coping process, improve comfort and enhance patient participation and autonomy. Since information needs are highly individual and vary throughout the course of the disease, an interactive approach of assessing the patients’ needs and responding to them adequately is mandatory. In this article, the information needs of advanced cancer patients and their families are explained, shortcomings of the present information concepts are discussed, and an integrative approach to responding to patients’ information needs throughout the care pathway is advocated. PMID:21547020

Resource utilization and cost analyses of home-based palliative care service provision: the Niagara West End-of-Life Shared-Care Project.

PubMed

Klinger, Christopher A; Howell, Doris; Marshall, Denise; Zakus, David; Brazil, Kevin; Deber, Raisa B

2013-02-01

Increasing emphasis is being placed on the economics of health care service delivery - including home-based palliative care. This paper analyzes resource utilization and costs of a shared-care demonstration project in rural Ontario (Canada) from the public health care system's perspective. To provide enhanced end-of-life care, the shared-care approach ensured exchange of expertise and knowledge and coordination of services in line with the understood goals of care. Resource utilization and costs were tracked over the 15 month study period from January 2005 to March 2006. Of the 95 study participants (average age 71 years), 83 had a cancer diagnosis (87%); the non-cancer diagnoses (12 patients, 13%) included mainly advanced heart diseases and COPD. Community Care Access Centre and Enhanced Palliative Care Team-based homemaking and specialized nursing services were the most frequented offerings, followed by equipment/transportation services and palliative care consults for pain and symptom management. Total costs for all patient-related services (in 2007 $CAN) were $1,625,658.07 - or $17,112.19 per patient/$117.95 per patient day. While higher than expenditures previously reported for a cancer-only population in an urban Ontario setting, the costs were still within the parameters of the US Medicare Hospice Benefits, on a par with the per diem funding assigned for long-term care homes and lower than both average alternate level of care and hospital costs within the Province of Ontario. The study results may assist service planners in the appropriate allocation of resources and service packaging to meet the complex needs of palliative care populations.

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

PubMed

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

2018-05-01

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

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

PubMed

Pidgeon, Tanya M; Johnson, Claire E; Lester, Leanne; Currow, David; Yates, Patsy; Allingham, Samuel F; Bird, Sonia; Eagar, Kathy

2018-04-01

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Enabling sense-making for patients receiving outpatient palliative treatment: A participatory action research driven model for person-centered communication.

PubMed

Öhlén, J; Carlsson, G; Jepsen, A; Lindberg, I; Friberg, F

2016-06-01

In clinical palliative cancer care, the diversity of patient concerns over time makes information provision a critical issue, the demands of information-seeking patients presenting a challenge to both the communicative and organizational skills of the health provider. This study puts forward a practice model for communication between patients, their family members, and professional health providers during ongoing palliative chemotherapy; a model which supports the providers in enabling person-centered communication. A constant comparative analysis adapted to participatory action research was applied. The model was developed step-wise in three interrelated cycles, with results from previous studies from palliative cancer care processed in relation to professional health providers' experience-based clinical knowledge. In doing this, focus group discussions were carried out with providers and patients to develop and revise the model. The Enabling Sense Making model for person-centered communication gave rise to three domains (which are also the major communicative actors in palliative care): the patient, the family, and the provider. These actors were placed in the context of a communicative arena. The three respective domains were built up in different layers discriminating between significant aspects of person-centered communication, from the manifest that is most usually explicated in dialogues, to the latent that tends to be implicitly mediated. The model intends to facilitate timely reorientation of care from curative treatment or rehabilitation to palliation, as well as the introduction of appropriate palliative interventions over time during palliative phases. In this way the model is to be regarded a frame for directing the awareness of the professionals, which focuses on how to communicate and how to consider the patient's way of reasoning. The model could be used as a complement to other strategic initiatives for the advancement of palliative care communication. It needs to be further evaluated in regard to practice evidence.

End-of-Life Care in Latin America

PubMed Central

Soto-Perez-de-Celis, Enrique; Chavarri-Guerra, Yanin; Pastrana, Tania; Ruiz-Mendoza, Rossana; Bukowski, Alexandra

2017-01-01

Cancer has become a global pandemic with disproportionately higher mortality rates in low- and middle- income countries, where a large fraction of patients present in advanced stages and in need of end-of-life care. Globally, the number of adults needing end-of-life care is greater than 19 million, and up to 78% of these patients are living in low- and middle- income countries. In the Americas alone, more than one million people are in need of end-of-life care, placing an enormous burden on local health systems, which are often unprepared to meet the challenge presented by this complex patient population. In Latin America, cancer care is characterized by the presence of vast inequalities between and within countries, and the provision of end-of-life care is no exception. Disparities in access to advanced care planning, with a lack of provision of adequate palliative care and pain medication, are common in the region. These shortcomings are related in large part to inadequate or inappropriate legislation, lack of comprehensive national palliative care plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable reporting of data, and cultural barriers. This report reviews the current status of end-of-life care in Latin America, focusing on identifying existing deficiencies and providing a framework for improvement. PMID:28717769

End-of-life experiences and expectations of Africans in Australia: cultural implications for palliative and hospice care.

PubMed

Hiruy, Kiros; Mwanri, Lillian

2014-03-01

The ageing and frail migrants who are at the end of life are an increasing share of migrants living in Australia. However, within such populations, information about end-of-life experiences is limited, particularly among Africans. This article provides some insights into the sociocultural end-of-life experiences of Africans in Australia and their interaction with the health services in general and end-of-life care in particular. It provides points for discussion to consider an ethical framework that include Afro-communitarian ethical principles to enhance the capacity of current health services to provide culturally appropriate and ethical care. This article contributes to our knowledge regarding the provision of culturally appropriate and ethical care to African patients and their families by enabling the learning of health service providers to improve the competence of palliative care systems and professionals in Australia. Additionally, it initiates the discussion to highlight the importance of paying sufficient attention to a diverse range of factors including the migration history when providing palliative and hospice care for patients from African migrant populations.

[Can cancer patient in terminal stage of cancer die with dignity at home? And under what conditions?].

PubMed

Slovácek, L; Simková, M; Petera, J; Filip, S

2011-01-01

In their brief communication, the authors are discussing the issue of palliative care for cancer patients in terminal stage of cancer. The authors are also contributing their own experience with the provision of such care to patients who wish to die at home.

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

PubMed

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

2018-06-21

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

Self-competence in death work among health and social care workers: a region-wide survey in Hong Kong.

PubMed

Cheung, Johnny T K; Au, Doreen W H; Chan, Wallace C H; Chan, Jenny H Y; Ng, Kenway; Woo, Jean

2018-04-20

According to the Quality of Death Index, Hong Kong is lagging behind many other Western and Asian countries in the category of palliative and healthcare. To ensure the provision of high-quality palliative care, it is important to explore the self-competence of health and social care workers in coping with death work including palliative care. This region-wide study aims to assess the level of self-competence with a validated Self-Competence in Death Work Scale (SC-DWS) and examine its correlates. The SC-DWS was administered to a cross-sectional convenience sample of health and social care workers across eight healthcare institutions between January and October 2016. Total scores for the 16-item SC-DWS and its Existential and Emotional subscales were calculated. We then examined sociodemographic variables (e.g., age, profession, place of employment) in relation to the total and subscale scores using multiple linear regression. Coding was conducted on responses to a final open-ended question asking about the personal views of the workers towards their self-competence in death work. We collected data from 885 health and social care workers. Mean score of the SC-DWS was 60.16 (range: 16 - 80), while its Existential and Emotional subscales scored 37.90 (range: 10 - 50) and 14.46 (range: 4 - 20) respectively. Four categories of personal view towards self-competence in death work including (1) personal resources; (2) existential challenges and coping; (3) emotional challenges and coping; and (4) personal recommendations on improving self-competence were identified. In multivariate analyses, workers aged 50 or above, divorced, working in Hospice A, Rehabilitation Hospital B (where a quality improvement initiative in end-of-life care was implemented) and Acute Hospital B (a Christian institution with strong caring culture) and with personal bereavement experience had significantly higher scores, whereas nurses scored significantly lower than less-educated personal care assistants. There is still room for improvement in self-competence in death work among health and social care workers, particularly the young, nurses and those working in acute hospitals. Future initiatives should involve identifying barriers in individual healthcare institutions. Training of the provision of palliative care is necessary.

Spirituality in cancer care at the end of life.

PubMed

Ferrell, Betty; Otis-Green, Shirley; Economou, Denice

2013-01-01

There is a compelling need to integrate spirituality into the provision of quality palliative care by oncology professionals. Patients and families report the importance of spiritual, existential, and religious concerns throughout the cancer trajectory. Leading palliative care organizations have developed guidelines that define spiritual care and offer recommendations to guide the delivery of spiritual services. There is growing recognition that all team members require the skills to provide generalist spiritual support. Attention to person-centered, family-focused oncology care requires the development of a health care environment that is prepared to support the religious, spiritual, and cultural practices preferred by patients and their families. These existential concerns become especially critical at end of life and following the death for family survivors. Oncology professionals require education to prepare them to appropriately screen, assess, refer, and/or intervene for spiritual distress.

Out-of-hours palliative care: what are the educational needs and preferences of general practitioners?

PubMed

Magee, Claire; Koffman, Jonathan

2016-09-01

Offering genuine choice to patients over place of care and death requires the provision of high-quality palliative care 24/7. This study examines the confidence of out-of-hours general practitioners (GPs) in symptom control and end of life prescribing, and identifies their educational needs and preferences in order to inform recommendations for future education. A self-completion postal survey was designed and sent to 1005 GPs working for an independent provider of out-of-hours services across England. Quantitative data were analysed using descriptive statistics and non-parametric tests. 203 (20.3%) GPs completed the survey questionnaire; 13.3% (n=27) worked exclusively out-of-hours. Confidence in assessing palliative care emergencies (42.8%, n=87: 'not so confident' or 'not at all confident'), managing symptoms in non-cancer patients (39.4%, n=80) and prescribing a new syringe driver (39.0%, n=79) was lowest. Lower confidence was associated with infrequent exposure to palliative patients (p<0.05) and lack of training in palliative care (p<0.05); 12.8% (n=26) had never received formal training. Educational preferences were closely associated with confidence (p<0.0005); the topics above were most requested. E-learning was the preferred method (67.5%, n=137). 82.1% (n=165) believed training focused on out-of-hours work would be beneficial. We identify that confidence in key palliative care competences is severely lacking. Educational strategies to address this concern must be targeted at GPs preferences for content and mode of delivery. Regular e-learning is favoured, but should be blended with other approaches that promote engagement including out-of-hours themed workshops and case discussion. Specialist palliative care services should engage with out-of-hours providers to support education. Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities.

PubMed

McLaughlin, Dorry; Barr, Owen; McIlfatrick, Sonja; McConkey, Roy

2015-12-01

Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals' perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training. A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed. Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: 'information and preparation', 'provision of care' and 'family-centred care'. This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians. 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/

Palliative care for cirrhosis: a UK survey of health professionals’ perceptions, current practice and future needs

PubMed Central

Low, Joseph; Vickerstaff, Victoria; Davis, Sarah; Bichard, Julia; Greenslade, Lynda; Hopkins, Katherine; Marshall, Aileen; Thorburn, Douglas; Jones, Louise

2016-01-01

Objective To determine the knowledge and practice patterns of a UK cohort of relevant healthcare professionals (HCPs) about delivering palliative care in cirrhosis, and to inform priorities for future research. Design An on-line questionnaire survey with closed and open responses. Setting HCPs identified from the mailing list of special interest groups in hepatology and gastroenterology (liver), general practice and specialist palliative care (SPC) across the UK. Results Of the 6181 potential contacts identified, 517 HCPs responded. Most believed a role exists for SPC in caring for people with cirrhosis, but many SPC HCPs felt ill prepared to provide good care to those facing death. Further training was needed in managing liver-related symptoms, symptom control and end of life issues. All HCP groups wished to increase community provision of palliative care support, but many general practitioners felt unable to manage advanced cirrhosis in the community. There were differences in the optimal trigger for SPC referral with liver HCPs less likely to refer at symptom deterioration. Prognostication, symptom management and service configuration were key areas identified for future research. Conclusions All who responded acknowledged the role of SPC in caring for those dying with cirrhosis and need for further training to improve confidence and enable joint working between SPC, general practice and liver teams. Low response rates make it difficult to generalise these findings, which require further validation. PMID:28839829

Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group.

PubMed

Ritchie, Christine L; Pollak, Kathryn I; Kehl, Karen A; Miller, Jeri L; Kutner, Jean S

2017-06-01

To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC). Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed. The PCRC supports investigators in the conduct of multisite clinical studies. After developing a governance structure and completing a proof of concept demonstration study, the PCRC expanded its infrastructure to include additional resource cores (Clinical Studies; Measurement; Data Informatics and Statistics; and Caregiver Studies). The PCRC also supports an Investigator Development Center as many palliative care investigators valued opportunities to advance their skills. Additional key aspects of PCRC resources include a Scientific Review Committee, a Publications Committee, and initiatives to purposefully engage investigators in a community of palliative care science. The PCRC has grown to over 300 members representing more than 130 distinct sites. To date, the PCRC has supported the submission of 51 research applications and has engaged in 27 studies. The PCRC supports investigator research development needs through webinars and clinical trials "intensives." To foster a sense of community, the PCRC has convened biannual meetings, developed special interest groups, and regularly communicates via a newsletter and its website. With a particular focus on facilitating conduct of rigorous multisite clinical studies, the PCRC fosters an engaged multidisciplinary research community, filling an important void in generating and disseminating evidence that informs the provision of high-quality care to people with serious illness.

Managing Bias in Palliative Care: Professional Hazards in Goals of Care Discussions at the End of Life.

PubMed

Callaghan, Katharine A; Fanning, Joseph B

2018-02-01

In the setting of end-of-life care, biases can interfere with patient articulation of goals and hinder provision of patient-centered care. No studies have addressed clinician bias or bias management specific to goals of care discussions at the end of life. To identify and determine the prevalence of palliative care clinician biases and bias management strategies in end-of-life goals of care discussions. A semistructured interview guide with relevant domains was developed to facilitate data collection. Participants were asked directly to identify biases and bias management strategies applicable to this setting. Two researchers developed a codebook to identify themes using a 25% transcript sample through an iterative process based on grounded theory. Inter-rater reliability was evaluated using Cohen κ. It was 0.83, indicating near perfect agreement between coders. The data approach saturation. A purposive sampling of 20 palliative care clinicians in Middle Tennessee participated in interviews. The 20 clinicians interviewed identified 16 biases and 11 bias management strategies. The most frequently mentioned bias was a bias against aggressive treatment (n = 9), described as a clinician's assumption that most interventions at the end of life are not beneficial. The most frequently mentioned bias management strategy was self-recognition of bias (n = 17), described as acknowledging that bias is present. This is the first study identifying palliative care clinicians' biases and bias management strategies in end-of-life goals of care discussions.

Population Health and Tailored Medical Care in the Home: the Roles of Home-Based Primary Care and Home-Based Palliative Care.

PubMed

Ritchie, Christine S; Leff, Bruce

2018-03-01

With the growth of value-based care, payers and health systems have begun to appreciate the need to provide enhanced services to homebound adults. Recent studies have shown that home-based medical services for this high-cost, high-need population reduce costs and improve outcomes. Home-based medical care services have two flavors that are related to historical context and specialty background-home-based primary care (HBPC) and home-based palliative care (HBPalC). Although the type of services provided by HBPC and HBPalC (together termed "home-based medical care") overlap, HBPC tends to encompass longitudinal and preventive care, while HBPalC often provides services for shorter durations focused more on distress management and goals of care clarification. Given workforce constraints and growing demand, both HBPC and HBPalC will benefit from working together within a population health framework-where HBPC provides care to all patients who have trouble accessing traditional office practices and where HBPalC offers adjunctive care to patients with high symptom burden and those who need assistance with goals clarification. Policy changes that support provision of medical care in the home, population health strategies that tailor home-based medical care to the specific needs of the patients and their caregivers, and educational initiatives to assure basic palliative care competence for all home-based medical providers will improve access and reduce illness burden to this important and underrecognized population. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Hospice or community network? Choices in end-of-life care in Jamaica.

PubMed

Mendoza, Roger Lee

2017-09-01

Now considered a subspecialty of medicine and nursing, palliative care is a critical aspect of healthcare at the end of life. National and international healthcare agencies typically attribute its slow or haphazard growth in developing countries to various resource constraints. However, this study provides evidence of the substantial and widening gap between policy advocacy and patient choices in end-of-life care. It does so by establishing the incentives and risks that underlie decision-making by patients and providers against the relative scarcity of palliative care and hospices in these countries. Jamaica offers an illustrative case. It shares the socioeconomic conditions and isolated provision of hospice and palliative care that remain prevalent in many developing countries. Empirical information was collected from all Jamaican hospices, along with agency and media reports, for comparative institutional analysis. Financial and infrastructural challenges hamper hospice expansion and integration into formal healthcare systems in developing countries. Yet, other equally vital considerations are too often neglected. These include the high transaction costs of decision-making, which account for limited hospice accessibility, affordability, and efficiency, particularly to underserved populations. Risk and payoff calculations by patients and their families as well as hospices and their providers lead to two strategic options in maximizing hospice value and/or minimizing transaction costs in end-of-life care. Policy formulation and advocacy for hospice and palliative care should match aggregate demand. The socio-cultural milieu of care is critical and should be equally considered. Otherwise, providing and expanding free or subsidized palliative care at the end-of-life stage can become cost-inefficient relative to robust family and grassroots community networks.

Evaluating a dignity care intervention for palliative care in the community setting: community nurses' perspectives.

PubMed

McIlfatrick, Sonja; Connolly, Michael; Collins, Rita; Murphy, Tara; Johnston, Bridget; Larkin, Philip

2017-12-01

To evaluate a dignity care intervention provided by community nurses seeking to address dignity concerns for people with advanced and life-limiting conditions. Evidence would suggest that dying people fear a loss of dignity and a central focus of palliative care is to assist people to die with dignity. Whilst community nurses have a key role to play in the delivery of palliative care, specific interventions for dignity are lacking. A mixed methods study using online survey and focus group interviews and thematic analysis to examine data. Twenty four community nurses implemented the dignity care intervention for people with advanced and life-limiting conditions were recruited from four pilot sites across Ireland. Four focus group interviews and on line survey were conducted between March-June 2015. The community nurses found the dignity care intervention useful. It helped the nurses to provide holistic end-of-life care and assisted in the overall assessment of palliative care patients, identifying areas that might not otherwise have been noted. Whilst it was a useful tool for communication, they noted that it stimulated some emotionally sensitive conversations for which they felt unprepared. Implementing the dignity care intervention in practice was challenging. However, the dignity care intervention facilitated holistic assessment and identified patient dignity-related concerns that may not have been otherwise identified. Further support is required to overcome barriers and enable dignity-conserving care. Ensuring dignity is a key aspect of palliative and end-of-life care; however, community nurses may not feel equipped to address this aspect of care. Implementing a dignity care intervention can assist in identifying patient dignity-related concerns and provision of holistic care. Community nurses need more training to assist in difficult conversations relating to dignity and end-of-life care. © 2017 John Wiley & Sons Ltd.

The role of UK district nurses in providing care for adult patients with a terminal diagnosis: a meta-ethnography.

PubMed

Offen, John

2015-03-01

To explore the role of UK district nurses in providing care for adult patients with a terminal diagnosis by reviewing qualitative research. Meta-ethnography was used to conduct the synthesis. CINAHL, MEDLINE and British Nursing Index (BNI) were searched comprehensively for primary research relating to the role of UK district nurses in palliative care. The abstracts and titles of 700 papers were screened against inclusion criteria, of these 97 full papers were appraised. Some 24 studies reported in 25 papers were selected for inclusion in the synthesis. In total, five key themes were identified: valuing the role; practical role; relationships with patients and families; providing psychological support; and role uncertainty. Further synthesis yielded two 'lines of argument'. The concept of the 'expert friend' argues that the atypical relationship district nurses cultivate with patients underpins district nurses' provision of palliative care and profoundly influences the nature of psychological support given. Secondly, the concept of 'threat and opportunity' encapsulates the threat district nurses can feel to their traditional role in palliative care through changing health and social policy, while recognising the benefits that access to specialist knowledge and better training can bring. The findings have implications for understanding the motivators and barriers experienced by district nurses delivering palliative care in a time of unprecedented change to community health services.

WA42 Proving its worth - changing public policy for palliative care, end of life care and bereavement through advocacy and communications.

PubMed

Edghill, Angela; Donohoe, Miriam

2015-04-01

The 2015 palliative care budget is €72 million (Euros) but up to €1.3 billion spent on end of life care annually - much of this larger figure unplanned and uncoordinated. Geographic and other inequities evident in palliative care provision. Build support for the development and implementation of a National Strategy on Palliative Care, End of Life and Bereavement. Multi-layered approach to raising awareness and building consensus: Targeting the correct audience who can make change happen Presenting robust evidence including costs justifying reform and investment Demonstrating that issues affect a significant number of people Sharing experience and knowledge Knowing their policy priorities Staying resilient - advancing and introducing new angles to argument Engaging directly as advocates within the political system at all political levels - developing relationships with politicians Identifying advocates in the public service to promote policy change Using a variety of new and existing projects and programmes Encouraging patients and families to be self-advocates - using a novel project for discussing and recording future care preferences Supporting healthcare professionals to become effective advocates for patients Creating alliances to lobby for policy development Using media opportunities to sell the message The recognition of the importance of a strategic approach to palliative and end of life care acknowledged in Parliamentary Committee Report affords an opportunity to develop further policy and practice. This a long - term exercise, dependent on supporting the implementation plan, building momentum and promoting a public dialogue on sensitive issues around dying, death and bereavement. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Public health imperative of the 21st century: innovations in palliative care systems, services, and supports to improve health and well-being of older americans.

PubMed

Morrissey, Mary Beth; Herr, Keela; Levine, Carol

2015-04-01

A primary aim of federal aging and health policy must be promoting innovations in palliative care systems, services, and supports that improve the experience of growing old in America. Older adults must contend today with increasing burden over the life course often as the result of life-limiting chronic pain and chronic illnesses as well as social and economic factors beyond their control. These burdens are frequently shared with unpaid family caregivers who provide significant uncompensated medical care and social support to their loved ones. Enjoyment of the highest attainable standard of physical and mental health, recognized as a fundamental human right under international law, remains a goal for all older adults and encompasses the right to palliative care. For many older Americans, especially vulnerable subgroups who face health and pain disparities, however, this goal remains elusive. A public health strategy for implementing palliative care policy interventions will help to build age-friendly environments, assure the availability and accessibility of palliative systems of care, essential medicines, and an adequate generalist-level workforce, and sustain diffusion of innovation across all levels of health and social provision. The 2015 White House Conference on Aging must make these realignments a policy priority in order to foster social and economic development for all older Americans. © The Author 2015. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.

The Guy’s and St Thomas’s NHS Foundation Trust @home service: an overview of a new service

PubMed Central

Lee, Geraldine A.; Titchener, Karen

2017-01-01

Hospital in the home is a relatively new concept within the UK healthcare system. The Guy’s and St Thomas’s NHS Foundation Trust (GSTT) @home service ‘Bringing hospital care to your home’ was commissioned by Lambeth and Southwark CCG in 2014 to provide acute care in the patients’ place of residence by facilitating rapid discharge from hospital. The service is designed for 260–280 referrals each month from local hospitals, London Ambulance Service, GPs, district nurses and palliative care services. The GSTT@home provides intensive care for a short episode through multidisciplinary team work with the aim of returning the patient to their prior health status following an acute episode of ill health. The main criteria for referrals are adults, living within Lambeth or Southwark with an acute onset of illness often with acute exacerbations of chronic conditions. Care is delivered using 25 clinical pathways using integrated care teams, including those for respiratory disease, heart failure and palliative care services. Recently, the service extended to include overnight palliative care. As care shifts from hospital to the community, it is envisaged that these types of programmes will become an essential component of care provision. This paper describes the service and presents initial service evaluation data. PMID:28356923

The Guy's and St Thomas's NHS Foundation Trust @home service: an overview of a new service.

PubMed

Lee, Geraldine A; Titchener, Karen

2017-03-01

Hospital in the home is a relatively new concept within the UK healthcare system. The Guy's and St Thomas's NHS Foundation Trust (GSTT) @home service 'Bringing hospital care to your home' was commissioned by Lambeth and Southwark CCG in 2014 to provide acute care in the patients' place of residence by facilitating rapid discharge from hospital. The service is designed for 260-280 referrals each month from local hospitals, London Ambulance Service, GPs, district nurses and palliative care services. The GSTT@home provides intensive care for a short episode through multidisciplinary team work with the aim of returning the patient to their prior health status following an acute episode of ill health. The main criteria for referrals are adults, living within Lambeth or Southwark with an acute onset of illness often with acute exacerbations of chronic conditions. Care is delivered using 25 clinical pathways using integrated care teams, including those for respiratory disease, heart failure and palliative care services. Recently, the service extended to include overnight palliative care. As care shifts from hospital to the community, it is envisaged that these types of programmes will become an essential component of care provision. This paper describes the service and presents initial service evaluation data.

[Palliative care in Primary Care: presentation of a case].

PubMed

Álvarez-Cordovés, M M; Mirpuri-Mirpuri, P G; Gonzalez-Losada, J; Chávez-Díaz, B

2013-10-01

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.

Living and dying with dignity in Chinese society: perspectives of older palliative care patients in Hong Kong.

PubMed

Ho, Andy Hau Yan; Chan, Cecilia Lai Wan; Leung, Pamela Pui Yu; Chochinov, Harvey Max; Neimeyer, Robert A; Pang, Samantha Mei Che; Tse, Doris Man Wah

2013-07-01

the empirical Dignity Model has profoundly influenced the provision of palliative care for older terminally ill patients in the West, as it provides practical guidance and intervention strategies for promoting dignity and reducing distress at the end-of-life. to examine the concept of 'living and dying with dignity' in the Chinese context, and explore the generalisability of the Dignity Model to older terminal patients in Hong Kong. using qualitative interviews, the concept of dignity was explored among 16 older Chinese palliative care patients with terminal cancer. Framework analysis with both deductive and inductive methods was employed. the three major categories of themes of the Dignity Model were broadly supported. However, the subtheme of death anxiety was not supported, while two subthemes of generativity/legacy and resilience/fighting spirit manifested differently in the Chinese context. Furthermore, four new emergent themes have been identified. They include enduring pain, moral transcendence, spiritual surrender and transgenerational unity. these findings highlight both a cultural and a familial dimension in the construct of dignity, underline the paramount importance of cultural awareness and competence for working with ethnically diverse groups, and call for a culturally sensitive and family oriented approach to palliative care interventions with older Chinese terminal patients.

A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients.

PubMed

Weekly, Taelyr; Walker, Nicole; Beck, Jill; Akers, Sean; Weaver, Meaghann

2018-01-26

Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.

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

PubMed

Pelayo, Marta; Cebrián, Diego; Areosa, Almudena; Agra, Yolanda; Izquierdo, Juan Vicente; Buendía, Félix

2011-05-23

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

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

PubMed Central

2011-01-01

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

Trends in cause and place of death for children in Portugal (a European country with no Paediatric palliative care) during 1987-2011: a population-based study.

PubMed

Forjaz de Lacerda, Ana; Gomes, Barbara

2017-12-22

Children and adolescents dying from complex chronic conditions require paediatric palliative care. One aim of palliative care is to enable a home death if desired and well supported. However, there is little data to inform care, particularly from countries without paediatric palliative care, which constitute the majority worldwide. This is an epidemiological study analysing death certificate data of decedents aged between 0 and 17 years in Portugal, a developed Western European country without recognised provision of paediatric palliative care, from 1987 to 2011. We analysed death certificate data on cause and place of death; the main outcome measure was home death. Complex chronic conditions included cancer, cardiovascular, neuromuscular, congenital/genetic, respiratory, metabolic, gastro-intestinal, renal, and haematology/immunodeficiency conditions. Multivariate analysis determined factors associated with home death in these conditions. Annual deaths decreased from 3268 to 572. Of 38,870 deaths, 10,571 were caused by complex chronic conditions, their overall proportion increasing from 23.7% to 33.4% (22.4% to 45.4% above age 1-year). For these children, median age of death increased from 0.5 to 4.32-years; 19.4% of deaths occurred at home, declining from 35.6% to 11.5%; factors associated with home death were year of death (adjusted odds ratio 0.89, 95% confidence interval 0.89-0.90), age of death (6-10 year-olds 21.46, 16.42-28.04, reference neonates), semester of death (October-March 1.18, 1.05-1.32, reference April-September), and cause of death (neuromuscular diseases 1.59, 1.37-1.84, reference cancer), with wide regional variation. This first trend analysis of paediatric deaths in Portugal (an European country without paediatric palliative care) shows that palliative care needs are increasing. Children are surviving longer and, in contrast with countries where paediatric palliative care is thriving, there is a long-term trend of dying in hospital instead of at home. Age, diagnosis, season and region are associated with home death, and should be considered when planning services to support families choosing this option. Priorities should address needs of the youngest children, those with cancer, neuromuscular and cardiovascular conditions, as well as inequities related to place of residence.

A review of patients with advanced cervical cancer presenting to palliative care services at Queen Elizabeth Central Hospital in Blantyre, Malawi.

PubMed

Bates, M J; Mijoya, A

2015-09-01

Cervical cancer is the commonest cancer affecting women in Malawi, which has the highest rate of this disease in the world. Most cases are diagnosed at an advanced stage. To describe the symptom burden, palliative care interventions, and outcomes of cervical cancer patients who entered care at Tiyanjane Clinic in Blantyre, Malawi, between January and December 2012. We reviewed the case files of 72 patients presenting to our hospital-based palliative care service over one year. The mean age was 49.5 years. Twenty-six patients (36%) were HIV-positive and the majority of these (n = 22; 85%) were on antiretroviral medication at presentation to palliative care. Pain (n = 66; 92%), vaginal discharge (n = 44; 61%), and unpleasant odour (n = 37; 51%) were commonly reported. Over a third of patients (n = 26; 36%) reported pain in two or more sites. Fourteen patients (19%) reported vaginal bleeding. Spousal breakdown (through widowhood or divorce) was noted in over half (n = 41; 57%) of all cases. Pain relief was provided to 69 (96%) of the patients (morphine to 40 patients; 56%). Common interventions provided included metronidazole tablets (used vaginally), sanitary items, and counselling. At the end of the study period, 18 patients (25%) were still under the care of palliative services. Access to medications such as morphine, metronidazole and tranexamic acid can improve quality of life, even when radiotherapy is limited. Health care teams require necessary skills and training, including how to perform a comprehensive assessment, with an emphasis on the provision of psychosexual counselling, to assist with the complexity of symptoms occurring in this vulnerable group.

Wiisokotaatiwin: development and evaluation of a community-based palliative care program in Naotkamegwanning First Nation.

PubMed

Nadin, Shevaun; Crow, Maxine; Prince, Holly; Kelley, Mary Lou

2018-04-01

Approximately 474 000 Indigenous people live in 617 First Nations communities across Canada; 125 of those communities are located in Ontario, primarily in rural and remote areas. Common rural health challenges, including for palliative care, involve quality and access. The need for culturally relevant palliative care programs in First Nations communities is urgent because the population is aging with a high burden of chronic and terminal disease. Because local palliative care is lacking, most First Nations people now leave their culture, family and community to receive care in distant hospitals or long-term care homes. Due to jurisdictional issues, a policy gap exists where neither federal nor provincial governments takes responsibility for funding palliative care in First Nations communities. Further, no Canadian program models existed for how different levels of government can collaborate to fund and deliver palliative care in First Nations communities. This article describes an innovative, community-based palliative care program (Wiisokotaatiwin) developed in rural Naotkamegwanning, and presents the results of a process evaluation of its pilot implementation. The evaluation aimed to (i) document the program's pilot implementation, (ii) assess progress toward intended program outcomes and (iii) assess the perceived value of the program. The Wiisokotaatiwin Program was developed and implemented over 5 years using participatory action research (http://www.eolfn.lakeheadu.ca). A mixed-method evaluation approach was adopted. Descriptive data were extracted from program documents (eg client registration forms). Client tracking forms documented service provision data for a 4-month sample period. Quantitative and qualitative data were collected through client and family member questionnaires (n=7) and healthcare provider questionnaires (n=22). A focus group was conducted with the program leadership team responsible for program development. Quantitative data were summarized using descriptive statistics. An inductive approach was used to identify themes in the qualitative data related to the evaluation questions. The findings demonstrated the program was implemented as intended, and that there was a need for the program, with six clients on the 10-month pilot. The findings also indicated achievement of program-level outcomes and progress toward system-level outcomes. Clients/families and healthcare providers were satisfied with the program and perceived it to be meeting its objectives. The program model was also perceived to be transferrable to other First Nations communities. The results demonstrate how a rural First Nations community can build capacity and develop a palliative care program tailored to their unique culture and context that builds upon and is integrated into existing services. The Wiisokotaatiwin Program allowed community members to receive their palliative care at home, improved client experience and enhanced service integration. This article provides a First Nations specific model for a palliative care program that overcomes jurisdictional issues at the local level, and a methodology for developing and evaluating community-based palliative care programs in rural First Nations communities. The article demonstrates how local, federal and provincial healthcare providers and organizations collaborated to build capacity, fund and deliver community-based palliative care. The described process of developing the program has applicability in other First Nations (Indigenous) communities and for healthcare decisionmakers.

Providing end-of-life care in general practice: findings of a national GP questionnaire survey.

PubMed

Mitchell, Sarah; Loew, Joelle; Millington-Sanders, Catherine; Dale, Jeremy

2016-09-01

With increasing numbers of people living with complex life-limiting multimorbidity in the community, consideration must be given to improving the organisation and delivery of high-quality palliative and end-of-life care (EOLC). To provide insight into the experience of GPs providing EOLC in the community, particularly the facilitators and barriers to good-quality care. A web-based national UK questionnaire survey circulated via the Royal College of General Practitioners, NHS, Marie Curie, and Macmillan networks to GPs. Responses were analysed using descriptive statistics and an inductive thematic analysis. Responses were received from 516 GPs, who were widely distributed in terms of practice location. Of these, 97% felt that general practice plays a key role in the delivery of care to people approaching the end of life and their families. Four interdependent themes emerged from the data: continuity of care - which can be difficult to achieve because of resource concerns including time, staff numbers, increasing primary care workload, and lack of funding; patient and family factors - with challenges including early identification of palliative care needs and recognition of the end of life, opportunity for care planning discussions, and provision of support for families; medical management - including effective symptom-control and access to specialist palliative care services; and expertise and training - the need for training and professional development was recognised to enhance knowledge, skills, and attitudes towards EOLC. The findings reveal enduring priorities for policy, commissioning, practice development, and research in future primary palliative care. © British Journal of General Practice 2016.

Practice and Perceived Importance of Advance Care Planning and Difficulties in Providing Palliative Care in Geriatric Health Service Facilities in Japan: A Nationwide Survey.

PubMed

Yokoya, Shoji; Kizawa, Yoshiyuki; Maeno, Takami

2018-03-01

The provision of end-of-life (EOL) care by geriatric health service facilities (GHSFs) in Japan is increasing. Advance care planning (ACP) is one of the most important issues to provide quality EOL care. This study aimed to clarify the practice and perceived importance of ACP and the difficulties in providing palliative care in GHSFs. A self-report questionnaire was mailed to head nurses at 3437 GHSFs nationwide. We asked participants about their practices regarding ACP, their recognition of its importance, and their difficulties in providing palliative care. We also analyzed the relationship between these factors and EOL care education. Among 844 respondents (24.5% response rate), approximately 69% to 81% of head nurses confirmed that GHSF residents and their families understood disease conditions and goals of care. There was a large discrepancy between the actual practice of ACP components and the recognition of their importance (eg, asking residents about existing advance directive [AD; 27.5% practiced it, while 79.6% considered it important]; recommending completion of an AD [18.1% vs 68.4%], and asking for designation of a health-care proxy [30.4% vs 76.8%]). The EOL care education was provided at 517 facilities (61.3%). Head nurses working at EOL care education-providing GHSFs practiced ACP significantly more frequently and had significantly fewer difficulties in providing palliative care. A large discrepancy was found between GHSF nurses' practice of ACP and their recognition of its importance. Providing EOL care education in GHSFs may increase ACP practices and enhance respect for resident's preferences concerning EOL care.

Working with the Mental Capacity Act: findings from specialist palliative and neurological care settings.

PubMed

Wilson, Eleanor; Seymour, Jane E; Perkins, Paul

2010-06-01

Since October 2007 staff across health and social care services in England and Wales have been guided by the Mental Capacity Act (2005) in the provision of care for those who may lack capacity to make some decisions for themselves. This paper reports on the findings from a study with 26 staff members working in three palliative and three neurological care centres. Semistructured interviews were used to gain an understanding of their knowledge of the Mental Capacity Act, the issue of capacity itself and the documentation processes associated with the introduction of the Act and in line with advance care planning. Within this setting advance care planning is a key part of care provision and the mental capacity of service users is a regular issue. Findings show that staff generally had a good understanding of issues around capacity but felt unclear about some of the terminology related to the Mental Capacity Act, impacting on their confidence to discuss issues with service users and complete the documentation. Many felt the Act and its associated documentation had aided record-keeping in an area staff already delivered well in practice. Advance care planning in the context of the Mental Capacity Act is not as well embedded in practice as providers would like and consideration needs to be given to how and when staff should approach these issues with service users.

What matters most for end-of-life care? Perspectives from community-based palliative care providers and administrators

PubMed Central

Mistry, Bina; Bainbridge, Daryl; Bryant, Deanna; Tan Toyofuku, Sue; Seow, Hsien

2015-01-01

Objectives There has been little research conducted to understand the essential meaning of quality, community-based, end-of-life (EOL) care, despite the expansion of these services. The purpose of this study was to define what matters most for EOL care from the perspective of a diverse range of palliative care providers in the community who have daily encounters with death and dying. Methods We used interviews to explore the perceptions of providers and administrators from 14 specialised palliative care teams in Ontario, Canada. Participants were prompted with the question ‘What matters most for EOL care?’ Responses were analysed using a phenomenological approach to derive themes depicting the universal essence of EOL care. Results Data from 107 respondents were obtained and analysed, from which 40 formulated concepts emerged; these were further grouped into 9 themes. Of the respondents, 39% were nurses, 19% physicians, 27% were supervisors or executives and 15% other. The most predominate concept was that Patient's Wishes are Fulfilled, cited by almost half the respondents. The most prominent themes were Addressing the Non-physical Needs, Healthcare Teams’ Nature of Palliative Care Delivery, Patient Wishes are Honoured, Addressing the Physical Needs, Preparing for and Accepting Death, Communication and Relationship Development, and Involving and Supporting the Family. Conclusions 9 critical domains of EOL care evolved from the interviews, indicating that quality EOL care extends beyond managing physical pain, but includes a holistic perspective of care, a healthcare team dedicated to the EOL journey and a patient-centred pathway. Tailoring the provision of care to consider these important elements plays a critical role in supporting a positive EOL experience for patients and families. PMID:26124510

Cost Analysis and Policy Implications of a Pediatric Palliative Care Program.

PubMed

Gans, Daphna; Hadler, Max W; Chen, Xiao; Wu, Shang-Hua; Dimand, Robert; Abramson, Jill M; Ferrell, Betty; Diamant, Allison L; Kominski, Gerald F

2016-09-01

In 2010, California launched Partners for Children (PFC), a pediatric palliative care pilot program offering hospice-like services for children eligible for full-scope Medicaid delivered concurrently with curative care, regardless of the child's life expectancy. We assessed the change from before PFC enrollment to the enrolled period in 1) health care costs per enrollee per month (PEPM), 2) costs by service type and diagnosis category, and 3) health care utilization (days of inpatient care and length of hospital stay). A pre-post analysis compared enrollees' health care costs and utilization up to 24 months before enrollment with their costs during participation in the pilot, from January 2010 through December 2012. Analyses were conducted using paid Medicaid claims and program enrollment data. The average PEPM health care costs of program enrollees decreased by $3331 from before their participation in PFC to the enrolled period, driven by a reduction in inpatient costs of $4897 PEPM. PFC enrollees experienced a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3. Average length of stay per hospitalization dropped from an average of 16.7 days before enrollment to 6.5 days while in the program. Through the provision of home-based therapeutic services, 24/7 access to medical advice, and enhanced, personally tailored care coordination, PFC demonstrated an effective way to reduce costs for children with life-limiting conditions by moving from costly inpatient care to more coordinated and less expensive outpatient care. PFC's home-based care strategy is a cost-effective model for pediatric palliative care elsewhere. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Piloting the role of a pharmacist in a community palliative care multidisciplinary team: an Australian experience

PubMed Central

2011-01-01

Background While the home is the most common setting for the provision of palliative care in Australia, a common problem encountered here is the inability of patient/carers to manage medications, which can lead to misadventure and hospitalisation. This can be averted through detection and resolution of drug related problems (DRPs) by a pharmacist; however, they are rarely included as members of the palliative care team. The aim of this study was to pilot a model of care that supports the role of a pharmacist in a community palliative care team. A component of the study was to develop a cost-effective model for continuing the inclusion of a pharmacist within a community palliative care service. Methods The study was undertaken (February March 2009-June 2010) in three phases. Development (Phase 1) involved a literature review; scoping the pharmacist's role; creating tools for recording DRPs and interventions, a communication and education strategy, a care pathway and evidence based patient information. These were then implemented in Phase 2. Evaluation (Phase 3) of the impact of the pharmacist's role from the perspectives of team members was undertaken using an online survey and focus group. Impact on clinical outcomes was determined by the number of patients screened to assess their risk of medication misadventure, as well as the number of medication reviews and interventions performed to resolve DRPs. Results The pharmacist screened most patients (88.4%, 373/422) referred to the palliative care service to assess their risk of medication misadventure, and undertook 52 home visits. Medication reviews were commonly conducted at the majority of home visits (88%, 46/52), and a variety of DRPs (113) were detected at this point, the most common being "patient requests drug information" (25%, 28/113) and "condition not adequately treated" (22%, 25/113). The pharmacist made 120 recommendations in relation to her interventions. Fifty percent of online survey respondents (10/20) had interacted 10 or more times with the pharmacist for advice. All felt that the pharmacist's role was helpful, improving their knowledge of the different medications used in palliative care. The six team members who participated in the focus group indicated that there were several benefits of the pharmacist's contributions towards medication screening and review. Conclusions The inclusion of a pharmacist in a community palliative care team lead to an increase in the medication-related knowledge and skills of its members, improved patients' medication management, and minimised related errors. The model of care created can potentially be duplicated by other palliative care services, although its cost-effectiveness was unable to be accurately tested within the study. PMID:22035160

Development of a state-wide pediatric palliative care service in Australia: referral and outcomes over two years.

PubMed

Herbert, Anthony; Bradford, Natalie; Donovan, Leigh; Pedersen, Lee-Anne; Irving, Helen

2014-03-01

Pediatric palliative care is an evolving specialty that aims to improve the lives of children with a life-limiting condition. As an emerging specialty, there is much to be learned about service provision and the expected outcomes that can be achieved. Additionally, quantification of the needs for pediatric palliative care is complicated by the uncertainty of defining the population that requires care. Our aim was to define the characteristics of the population cared for by a newly formed state-wide service in Queensland, Australia, and describe the development of the service over a 24-month period. Data on all referrals and outcomes were collected. Descriptive statistics were used to describe patterns including the variation in outcomes between children with oncology and non-oncology diagnoses. Other factors influencing the development of the service including involved health professionals and the model of the Australian health care system are also described. Over a 24-month period, 150 patients were referred of whom 117 subsequently died. There was a wide range of diseases and ages, and significantly, 58% of children were from regional or rural locations where there are can be limited access to specialist pediatric services. The average length of service was 83 days. A variety of factors were identified as being important for providing optimal care including ensuring equity in access, timing of referral, and continuity of care. The importance of a population-based approach to pediatric palliative care in a state that is geographically large and diverse like Queensland is highlighted. This article may provide valuable information to other health care providers who care for children with life-limiting illnesses.

Moving towards an enhanced community palliative support service (EnComPaSS): protocol for a mixed method study.

PubMed

Arris, Steven M; Fitzsimmons, Deborah A; Mawson, Susan

2015-04-30

The challenge of an ageing population and consequential increase of long term conditions means that the number of people requiring palliative care services is set to increase. One UK hospice is introducing new information and communication technologies to support the redesign of their community services; improve experiences of existing patients; and allow efficient and effective provision of their service to more people. Community Palliative Care Nurses employed by the hospice will be equipped with a mobile platform to improve communication, enable accurate and efficient collection of clinical data at the bedside, and provide access to clinical records at the point of care through an online digital nursing dashboard. It is believed that this will ensure safer clinical interventions, enable delegated specialist care deployment, support the clinical audit of patient care and improve patient safety and patient/carer experience. Despite current attempts to evaluate the implementation of such technology into end of life care pathways, there is still limited evidence supporting the notion that this can be sustained within services and implemented to scale. This study presents an opportunity to carry out a longitudinal evaluation of the implementation of innovative technology to provide evidence for designing more efficient and effective community palliative care services. A mixed methods approach will be used to understand a wide range of organisational, economic, and patient-level factors. The first stage of the project will involve the development of an organisational model incorporating proposed changes resulting from the introduction of new novel mobile technologies. This model will guide stage two, which will consist of gathering and analysing primary evidence. Data will be collected using interviews, focus groups, observation, routinely collected data and documents. The implementation of this new approach to community-based palliative care delivery will require significant changes to established working patterns. This new service delivery model is being developed by the Hospice in collaboration with a team of international academic, industry, and clinical commissioning service improvement specialists. The findings from this initial evaluation will provide valuable baseline evidence regarding the delivery of palliative and end-of-life care services.

Opinions of the Dutch public on palliative sedation: a mixed-methods approach

PubMed Central

van der Kallen, Hilde TH; Raijmakers, Natasja JH; Rietjens, Judith AC; van der Male, Alex A; Bueving, Herman J; van Delden, Johannes JM; van der Heide, Agnes

2013-01-01

Background Palliative sedation is defined as deliberately lowering a patient’s consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia. Aim To inform healthcare professionals about attitudes of the general public regarding palliative sedation. Design and setting A cross-sectional survey among members of the Dutch general public followed by qualitative interviews. Method One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed. Results In total, 22% of the responders indicated knowing the term ‘palliative sedation’. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient’s life (79%, P = 0.54). Conclusion Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options. PMID:24152482

Opinions of the Dutch public on palliative sedation: a mixed-methods approach.

PubMed

van der Kallen, Hilde T H; Raijmakers, Natasja J H; Rietjens, Judith A C; van der Male, Alex A; Bueving, Herman J; van Delden, Johannes J M; van der Heide, Agnes

2013-10-01

Palliative sedation is defined as deliberately lowering a patient's consciousness, to relieve intolerable suffering from refractory symptoms at the end of life. Palliative sedation is considered a last resort intervention in end-of-life care that should not be confused with euthanasia. To inform healthcare professionals about attitudes of the general public regarding palliative sedation. design and setting: A cross-sectional survey among members of the Dutch general public followed by qualitative interviews. One thousand nine hundred and sixty members of the general public completed the questionnaire, which included a vignette describing palliative sedation (response rate 78%); 16 participants were interviewed. In total, 22% of the responders indicated knowing the term 'palliative sedation'. Qualitative data showed a variety of interpretations of the term. Eighty-one per cent of the responders agreed with the provision of sedatives as described in a vignette of a patient with untreatable pain and a life expectancy of <1 week who received sedatives to alleviate his suffering. This percentage was somewhat lower for a patient with a life expectancy of <1 month (74%, P = 0.007) and comparable in the case where the physician gave sedatives with the aim of ending the patient's life (79%, P = 0.54). Most of the general public accept the use of palliative sedation at the end of life, regardless of a potential life-shortening effect. However, confusion exists about what palliative sedation represents. This should be taken into account by healthcare professionals when communicating with patients and their relatives on end-of-life care options.

Patients' and carers' perspectives of palliative care in general practice: A systematic review with narrative synthesis.

PubMed

Green, Emilie; Knight, Selena; Gott, Merryn; Barclay, Stephen; White, Patrick

2018-04-01

General practitioners have overall responsibility for community care, including towards end of life. Current policy places generalists at the centre of palliative care provision. However, little is known about how patients and carers understand the general practitioner's role. To explore patient and carer perspectives of (1) the role of the general practitioner in providing palliative care to adult patients and (2) the facilitators and barriers to the general practitioner's capacity to fulfil this perceived role. Systematic literature review and narrative synthesis. Seven electronic databases (MEDLINE, Embase, PsycINFO, BNI, CINAHL, Cochrane and HMIC) were searched from inception to May 2017. Two reviewers independently screened papers at title, abstract and full-text stages. Grey literature, guideline, hand searches of five journals and reference list/citation searches of included papers were undertaken. Data were extracted, tabulated and synthesised using narrative, thematic analysis. A total of 25 studies were included: 14 employed qualitative methods, 8 quantitative survey methods and 3 mixed-methods. Five key themes were identified: continuity of care, communication between primary and secondary care, contact and accessibility, communication between general practitioner and patient, and knowledge and competence. Although the terminology and context of general practice vary internationally, themes relating to the perceived role of general practitioners were consistent. General practitioners are considered well placed to provide palliative care due to their breadth of clinical responsibility, ongoing relationships with patients and families, and duty to visit patients at home and coordinate healthcare resources. These factors, valued by service users, should influence future practice and policy development.

Development of a health information technology-based data system in community-based hospice and palliative care.

PubMed

Abernethy, Amy P; Wheeler, Jane L; Bull, Janet

2011-05-01

Few hospice and palliative care organizations use health information technology (HIT) for data collection and management; the feasibility and utility of a HIT-based approach in this multi-faceted, interdisciplinary context is unclear. To develop a HIT-based data infrastructure that serves multiple hospice and palliative care sites, meeting clinical and administrative needs with data, technical, and analytic support. Through a multi-site academic/community partnership, a data infrastructure was collaboratively developed, pilot-tested at a community-based site, refined, and demonstrated for data collection and preliminary analysis. Additional sites, which participated in system development, became prepared to contribute data to the growing aggregate database. Electronic data collection proved feasible in community-based hospice and palliative care. The project highlighted "success factors" for implementing HIT in this field: engagement of site-based project "champions" to promote the system from within; involvement of stakeholders at all levels of the organization, to promote culture change and buy-in; attention to local needs (e.g., data for quality reporting) and requirements (e.g., affordable cost, efficiency); consideration of practical factors (e.g., potential to interfere with clinical flow); provision of adequate software, technical, analytic, and statistical support; availability of flexible HIT options (e.g., different data-collection platforms); and adoption of a consortium approach in which sites can support one another, learn from each others' experiences, pool data, and benefit from economies of scale. In hospice and palliative care, HIT-based data collection/management has potential to generate better understanding of populations and outcomes, support quality assessment/quality improvement, and prepare sites to participate in research. Copyright © 2011 American Journal of Preventive Medicine. Published by Elsevier Inc. All rights reserved.

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

PubMed

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

2018-02-23

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

Learning from the public: citizens describe the need to improve end-of-life care access, provision and recognition across Europe

PubMed Central

Daveson, Barbara A.; Alonso, Juan P.; Calanzani, Natalia; Ramsenthaler, Christina; Gysels, Marjolein; Antunes, Barbara; Moens, Katrien; Groeneveld, Esther I.; Albers, Gwenda; Finetti, Silvia; Pettenati, Francesca; Bausewein, Claudia; Higginson, Irene J.; Harding, Richard; Deliens, Luc; Toscani, Franco; Ferreira, Pedro L.; Ceulemans, Lucas; Gomes, Barbara

2014-01-01

Background: Despite ageing populations and increasing cancer deaths, many European countries lack national policies regarding palliative and end-of-life care. The aim of our research was to determine public views regarding end-of-life care in the face of serious illness. Methods: Implementation of a pan-European population-based survey with adults in England, Belgium (Flanders), Germany, Italy, the Netherlands, Portugal and Spain. Three stages of analysis were completed on open-ended question data: (i) inductive analysis to determine a category-code framework; (ii) country-level manifest deductive content analysis; and (iii) thematic analysis to identify cross-country prominent themes. Results: Of the 9344 respondents, 1543 (17%) answered the open-ended question. Two prominent themes were revealed: (i) a need for improved quality of end-of-life and palliative care, and access to this care for patients and families and (ii) the recognition of the importance of death and dying, the cessation of treatments to extend life unnecessarily and the need for holistic care to include comfort and support. Conclusions: Within Europe, the public recognizes the importance of death and dying; they are concerned about the prioritization of quantity of life over quality of life; and they call for improved quality of end-of-life and palliative care for patients, especially for elderly patients, and families. To fulfil the urgent need for a policy response and to advance research and care, we suggest four solutions for European palliative and end-of-life care: institute government-led national strategies; protect regional research funding; consider within- and between-country variance; establish standards for training, education and service delivery. PMID:23487548

Improving palliative care provision in primary care: a pre- and post-survey evaluation among PaTz groups.

PubMed

van der Plas, Annicka Gm; Pasman, H Roeline W; Schweitzer, Bart; Onwuteaka-Philipsen, Bregje D

2018-05-01

In PaTz (PAlliatieve Thuis Zorg, palliative care at home), modelled after the Gold Standards Framework, GPs and community nurses meet on a regular basis to identify patients with palliative care needs (the PaTz register), and to discuss care for these patients. To study the effects of the implementation of PaTz, and provide additional analyses on two important elements: the PaTz register and patient discussions. A pre- and post-evaluation among Dutch GPs ( n = 195 before the start of PaTz; n = 166, 1 year after the start of PaTz). The GPs also provided data on recently deceased patients ( n = 460 before the start of PaTz; n = 305 14 months after the start of PaTz). GPs from all 37 PaTz groups filled in questionnaires. Pre- and post-test differences were analysed using multilevel analyses to adjust for PaTz group. Identification of patients with palliative care needs was done systematically for more patients after implementation of PaTz compared with before (54.3% versus 17.6%). After implementation, 64.8% of deceased patients had been included on the PaTz register. For these patients, when compared with patients not included on the PaTz register, preferred place of death was more likely to be known (88.1% of patients not on the register and 97.3% of deceased patients included on the register), GPs were more likely to have considered a possible death sooner (>1 month before death: 53.0% and 80.2%), and conversations on life expectancy, physical complaints, existential issues, and possibilities of care occurred more often (60.8% and 81.3%; 68.6% and 86.1%; 22.5% and 34.2%; 60.8% and 84.0%, respectively). Implementation of PaTz improved systematic identification of palliative care patients within the GP practice. Use of the PaTz register has added value. © British Journal of General Practice 2018.

Palliative care in Japan: a review focusing on care delivery system.

PubMed

Morita, Tatsuya; Kizawa, Yoshiyuki

2013-06-01

Providing palliative care in Japan is one of the most important health issues. Understanding palliative care delivery systems of other countries is useful when developing and modifying palliative care systems worldwide. This review summarizes the current status of palliative care in Japan, focusing on the structure and process development. Palliative care units and hospital palliative care consultation teams are the two main specialized palliative care services in Japan. The number of palliative care units is 215 (involved in 8.4% of all cancer deaths), and there are approximately 500 hospital palliative care teams. Conversely, specialized home care services are one of the most undeveloped areas in Japan. However, the government has been trying to develop more efficient home care services through modifying laws, healthcare systems, and multiple educational and cooperative projects. The numbers of palliative care specialists are increasing across all disciplines: cancer pain nurses (1365), palliative care nurses (1100), palliative care physicians (646), and palliative care pharmacists (238). Postgraduate education for physicians is performed via the special nationwide efforts of the Palliative care Emphasis program on symptom management and Assessment for Continuous medical Education (PEACE) project - a 2-day program adopting a trainer-trainee strategy. Over 30,000 physicians have participated in the PEACE program. A total of 1298 and 544 physicians have completed a trainer course for palliative medicine and psycho-oncology, respectively. Multiple structure and process evaluation, bereaved family surveys in palliative care units, and patient and family evaluation in the regional palliative care program indicate many improvements. Palliative care in Japan has progressed rapidly, and the Cancer Control Act has played a very important role in developing palliative medicine. Challenges include developing a structure for palliative care in the community or regional palliative care programs, establishing a method to measure and improve the quality of palliative care at a national level, developing evidence-based medicine and policy making, and palliative care for the noncancerous population.

Definition of supportive care: does the semantic matter?

PubMed

Hui, David

2014-07-01

'Supportive care' is a commonly used term in oncology; however, no consensus definition exists. This represents a barrier to communication in both the clinical and research settings. In this review, we propose a unifying conceptual framework for supportive care and discuss the proper use of this term in the clinical and research settings. A recent systematic review revealed several themes for supportive care: a focus on symptom management and improvement of quality of life, and care for patients on treatments and those with advanced stage disease. These findings are consistent with a broad definition for supportive care: 'the provision of the necessary services for those living with or affected by cancer to meet their informational, emotional, spiritual, social, or physical needs during their diagnostic, treatment, or follow-up phases encompassing issues of health promotion and prevention, survivorship, palliation, and bereavement.' Supportive care can be classified as primary, secondary, and tertiary based on the level of specialization. For example, palliative care teams provide secondary supportive care for patients with advanced cancer. Until a consensus definition is available for supportive care, this term should be clearly defined or cited whenever it is used.

[Palliative care needs in the inmobilized population of a Primary Care area in Vigo Spain].

PubMed

Ferraz-Falcao, J R; Cadaval-Rodríguez, T; Rodríguez-Iglesia, R M; del Campo-Pérez, V M

2015-09-01

To determine palliative care needs in a sample of people with mobility problems in the area of the C.S. Matama by using the NECPAL instrument (identification and integral-integrated care of people with advanced chronic diseases in social and healthcare provision services). Descriptive and cross-sectional study of patients immobilized in a health centre in Vigo (87 subjects overall). The average age of our patients is 84.34 years and 82% are women. The most frequent immobilization type was the patient's inability to leave their home (64%). The result of this test was positive in 38% of cases (33 patients), most of whom have chronic diseases and only 1 patient has been diagnosed with cancer. There is a significant negative association between the score obtained on the Barthel scale and the ratio of positives to the test. Concerning the use of resources there are important differences regarding hospital admissions and PHC depending on the outcome of the test. These differences were statistically significant with regard to PHC and emergency consultations. An immobilized patient is not synonymous with a patient in need of palliative care; the tool used has been proved to be useful to detect this need, which concerns a third of our patients. The results of the questionnaire of need for care palliative (NECPAL) relate well to the basic activities of daily living (Barthel scale score) and to indicators of use of health services. Copyright © 2014 Sociedad Española de Médicos de Atención Primaria (SEMERGEN). Publicado por Elsevier España, S.L.U. All rights reserved.

Reporting Characteristics of Cancer Pain: A Systematic Review and Quantitative Analysis of Research Publications in Palliative Care Journals

PubMed Central

Kumar, Senthil P

2011-01-01

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

Palliative sedation and moral distress: A qualitative study of nurses.

PubMed

Lokker, M E; Swart, S J; Rietjens, J A C; van Zuylen, L; Perez, R S G M; van der Heide, A

2018-04-01

Clinical nursing practice may involve moral distress, which has been reported to occur frequently when nurses care for dying patients. Palliative sedation is a practice that is used to alleviate unbearable and refractory suffering in the last phase of life and has been linked to distress in nurses. The aim of this study was to explore nurses' reports on the practice of palliative sedation focusing on their experiences with pressure, dilemmas and morally distressing situations. In-depth interviews with 36 nurses working in hospital, nursing home or primary care. Several nurses described situations in which they felt that administration of palliative sedation was in the patient's best interest, but where they were constrained from taking action. Nurses also reported on situations where they experienced pressure to be actively involved in the provision of palliative sedation, while they felt this was not in the patient's best interest. The latter situation related to (1) starting palliative sedation when the nurse felt not all options to relieve suffering had been explored yet; (2) family requesting an increase of the sedation level where the nurse felt that this may involve unjustified hastening of death; (3) a decision by the physician to start palliative sedation where the patient had previously expressed an explicit wish for euthanasia. Nurses experienced moral distress in situations where they were not able to act in what they believed is the patient's best interest. Situations involving moral distress require nurses to be well informed and able to adequately communicate with suffering patients, distressed family and physicians. Copyright © 2018 Elsevier Inc. All rights reserved.

The Growing Demand for Hospice and Palliative Medicine Physicians: Will the Supply Keep Up?

PubMed

Lupu, Dale; Quigley, Leo; Mehfoud, Nicholas; Salsberg, Edward S

2018-04-01

The need for hospice and palliative care is growing rapidly as the population increases and ages and as both hospice and palliative care become more accepted. Hospice and palliative medicine (HPM) is a relatively new physician specialty, currently training 325 new fellows annually. Given the time needed to increase the supply of specialty-trained physicians, it is important to assess future needs to guide planning for future training capacity. We modeled the need for and supply of specialist HPM physicians through the year 2040 to determine whether training capacity should continue growing. To create a benchmark for need, we used a population-based approach to look at the current geographic distribution of the HPM physician supply. To model future supply, we calculated the annual change in current supply by adding newly trained physicians and subtracting physicians leaving the labor force. The current U.S. supply of HPM specialists is 13.35 per 100,000 adults 65 and older. This ratio varies greatly across the country. Using alternate assumptions for future supply and demand, we project that need in 2040 will range from 10,640 to almost 24,000 HPM specialist physicians. Supply will range from 8100 to 19,000. Current training capacity is insufficient to keep up with population growth and demand for services. HPM fellowships would need to grow from the current 325 graduates annually to between 500 and 600 per year by 2030 to assure sufficient physician workforce for hospice and palliative care services given current service provision patterns. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study.

PubMed

Ateş, Gülay; Ebenau, Anne Frederieke; Busa, Csilla; Csikos, Ágnes; Hasselaar, Jeroen; Jaspers, Birgit; Menten, Johan; Payne, Sheila; Van Beek, Karen; Varey, Sandra; Groot, Marieke; Radbruch, Lukas

2018-03-01

Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers' every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project "Patient-centred palliative care pathways in advanced cancer and chronic disease" (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers' burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the 'unit of care' and partner in caregiving, to improve their knowledge about, and access to, and the support available.

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

PubMed

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

2018-06-01

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

Does involving volunteers in the provision of palliative care make a difference to patient and family wellbeing? A systematic review of quantitative and qualitative evidence.

PubMed

Candy, Bridget; France, Rachel; Low, Joe; Sampson, Liz

2015-03-01

Despite the extent of volunteers' contribution to palliative care, and their role in direct patient care, there has been no systematic evaluation of the evidence-base on volunteers in relation to patient and family wellbeing. To critically review research, on the impact of volunteers involved in the direct care of palliative patients and their families. We searched for studies, reporting patient and family data on the impact of volunteer services in palliative care in thirteen citation databases up to May 2013. We included quantitative comparative studies. We also noted any non-comparative studies, enabling us to give a comprehensive review of the existing research. We also included qualitative studies that explored the experiences of patients and families who received volunteer support, potentially illustrating which aspects of volunteer activities patients and families value. We applied quality appraisal criteria to all studies meeting inclusion criteria. Two researchers undertook key review processes. We found eight studies. Only two studies were undertaken outside of North America; one in the Netherlands and the other in Uganda. All studies were in adult palliative care services. All evaluated volunteers were in home care settings, three of the studies included other settings such as hospitals and nursing homes. All of the studies fulfilled our quality appraisal criteria. Six of them were quantitative studies and two were comparative: one found that those families who experienced greater (as opposed to lesser) volunteer involvement were significantly more satisfied with care; the other found that patients survived significantly longer if they had received home visits from a volunteer. Four cross-sectional studies focused on satisfaction ratings. No study considered possible disadvantages or adverse effects of volunteer involvement. Two qualitative studies were identified; both highlighted the uniqueness of the role volunteers may fulfil in care support, from the viewpoint of patients and their families. Further research is needed to ensure the resource of volunteers in palliative care is used appropriately and effectively. Evaluation in well-designed comparative studies is recommended including economic analyses, as are further qualitative studies to explore the roles, benefits and possible adverse effects of volunteers. Evaluation is particularly needed outside of North America and in dedicated hospice facilities. Copyright © 2014 The Authors. Published by Elsevier Ltd.. All rights reserved.

Pharmacological Management of Symptoms in Children with Life-Limiting Conditions at the End of Life in the Asia Pacific.

PubMed

Chong, Lee Ai; Chong, Poh Heng; Chee, Joyce

2018-05-07

The provision of pediatric palliative care in Asia Pacific varies between countries and availability of essential medications for symptoms at the end of life in this region is unclear. To determine medications available and used in the management of six symptoms at the end of life among pediatric palliative care practitioners in Asia Pacific. To identify alternative pharmacological strategies for these six symptoms if the oral route was no longer possible and injections are refused. An online survey of all Asia Pacific Hospice Palliative Care Network (APHN) members was carried out to identify medications used for six symptoms (pain, dyspnea, excessive respiratory secretions, nausea/vomiting, restlessness, seizures) in dying children. Two scenarios were of interest: (1) hours to days before death and (2) when injectables were declined or refused. There were 54 responses from 18 countries. Majority (63.0%) of respondents were hospital based. About half of all respondents were from specialist palliative care services and 55.6% were from high-income countries. All respondents had access to essential analgesics. Several perceived that there were no available drugs locally to treat the five other commonly encountered symptoms. There was a wide variation in preferred drugs for treating each symptom that went beyond differences in drug availability or formulations. Future studies are needed to explore barriers to medication access and possible knowledge gaps among service providers in the region, so that advocacy and education endeavors by the APHN may be optimized.

Pediatric Palliative Care at a Glance

MedlinePlus

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

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

PubMed Central

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

2016-01-01

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

Coping with terminal illness: the experience of attending Specialist Palliative Day Care.

PubMed

Bradley, Sarah Elizabeth; Frizelle, Dorothy; Johnson, Miriam

2010-10-01

The provision of supportive and palliative care for people with life-shortening illness has been emphasized throughout Department of Health and National Institute of Clinical Excellence (NICE) cancer guidance. However, the question of whether services are achieving this aim has been sparsely researched to date particularly in relation to Specialist Palliative Day Care (SPDC) services. The current study aims to explore the experiences of patients attending SPDC with regard to coping with a terminal illness. The views of 11 patients attending SPDC were explored using semistructured interviews. An exploratory methodology (Interpretative Phenomenological Analysis [IPA]) was used to analyze the data to allow for an in-depth investigation. Emerging themes suggest that SPDC provides an environment in which patients are helped to cope with stressors through a sense of self, belonging, acceptance of the reality of death, and a focus on life. This work provides a piece of the puzzle in the exploration of the processes underpinning attendance at SPDC from a patient's perspective. It suggests that SPDC provides an environment in which patients receive help in coping with terminal illness. In such an under researched area it provides an insight regarding SPDC attendance which can be built upon or challenged by future research.

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

PubMed

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

2017-12-01

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

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

PubMed

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

2016-01-01

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

OA38 From service delivery to community enablement: a public health approach to palliative care.

PubMed

McLoughlin, Kathleen; Rhatigan, Jim; Richardson, Marie; Lloyd, Rebecca

2015-04-01

: Milford Care Centre is the only hospice in Ireland to make a strategic decision to embrace a public health approach to palliative care, through the development, implementation and evaluation of the Compassionate Communities Project. This presentation seeks to examine why Milford made the decision to move toward a community enablement model, describes the development and implementation of the Compassionate Communities Project to date, presents key findings from recent evaluations and highlights our plans for the future. The presentation uses a reflective, story telling approach to meet it's aims, coupled with data and statistics gathered from the evaluations, and includes a new short film 'Tell Me' developed by recent Computer Science graduates for the Project to use to engage with communities during Café Conversations. The presentation will highlight the relevance of Health Promoting Palliative Care theory to the development of a three-tier model of programme activity, examine the challenges in implementing such an approach and will discuss the impact of upstream intervention to downstream service provision using case studies. © 2015, Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

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

PubMed

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

2017-01-01

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

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

PubMed

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

2013-07-17

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

Measuring geographical accessibility to palliative and end of life (PEoLC) related facilities: a comparative study in an area with well-developed specialist palliative care (SPC) provision.

PubMed

Pearson, Clare; Verne, Julia; Wells, Claudia; Polato, Giovanna M; Higginson, Irene J; Gao, Wei

2017-01-26

Geographical accessibility is important in accessing healthcare services. Measuring it has evolved alongside technological and data analysis advances. High correlations between different methods have been detected, but no comparisons exist in the context of palliative and end of life care (PEoLC) studies. To assess how geographical accessibility can affect PEoLC, selection of an appropriate method to capture it is crucial. We therefore aimed to compare methods of measuring geographical accessibility of decedents to PEoLC-related facilities in South London, an area with well-developed SPC provision. Individual-level death registration data in 2012 (n = 18,165), from the Office for National Statistics (ONS) were linked to area-level PEoLC-related facilities from various sources. Simple and more complex measures of geographical accessibility were calculated using the residential postcodes of the decedents and postcodes of the nearest hospital, care home and hospice. Distance measures (straight-line, travel network) and travel times along the road network were compared using geographic information system (GIS) mapping and correlation analysis (Spearman rho). Borough-level maps demonstrate similarities in geographical accessibility measures. Strong positive correlation exist between straight-line and travel distances to the nearest hospital (rho = 0.97), care home (rho = 0.94) and hospice (rho = 0.99). Travel times were also highly correlated with distance measures to the nearest hospital (rho range = 0.84-0.88), care home (rho = 0.88-0.95) and hospice (rho = 0.93-0.95). All correlations were significant at p < 0.001 level. Distance-based and travel-time measures of geographical accessibility to PEoLC-related facilities in South London are similar, suggesting the choice of measure can be based on the ease of calculation.

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

PubMed Central

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

2018-01-01

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

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

PubMed

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

2018-06-01

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

Palliative Care Development in Mongolia.

PubMed

Davaasuren, Odontuya; Ferris, Frank D

2018-02-01

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

The potential of palliative care for patients with respiratory diseases

PubMed Central

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

2017-01-01

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

Palliative Care: Delivering Comprehensive Oncology Nursing Care.

PubMed

Dahlin, Constance

2015-11-01

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

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

PubMed

Doherty, Megan; Thabet, Chloé

2018-01-01

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

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

PubMed

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

2017-11-01

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

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

PubMed

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

2014-12-01

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

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

PubMed

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

2018-02-01

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

UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.

PubMed

Amador, Sarah; Goodman, Claire; Robinson, Louise; Sampson, Elizabeth L

2016-10-14

People living and dying with non-cancer diagnoses, including dementia, have poorer access to generalist and specialist palliative care than people with cancer, and experience worse outcomes in terms of pain and symptom control, and quality and experience of care. In the UK, the National Council for Palliative Care (NCPC) ran a national survey of services for end-of-life care for people with dementia (2008) in which 16 services were identified, and reported on case studies and examples of good practice. We updated the NCPC survey to review progress in previously identified services, identify factors that lead to sustainable services and identify new initiatives in this area of care. An online survey was developed and piloted before use. Initiatives were contacted via targeted (N=63) and open call invitations. The survey was made up of 5 sections. Quantitative data were analysed using descriptive statistics. 15 services responded. They engaged in a wide range of activities predominately providing direct care (80%) and workforce development/advisory or educational activities (87%). Results suggest that sustainability of services is reliant on clinicians with a leadership role and wider system support through funding mechanisms and a minimum level of integration within normal service provision. Recent initiatives are largely built on the expertise of the nursing profession (with or without input from medical consultants), and driven mainly by the charity and hospice sector. This has generated a potential new model of care provision in end of life dementia care, 'Hospice-enabled Dementia Care'. 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/.

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

PubMed Central

2013-01-01

Background According to EU policy, anyone in need of palliative care should be able to have access to it. It is therefore important to investigate which palliative care topics are subject to legislation and regulations in Europe and how these are implemented in (national) health care plans. This paper aims to deliver a structured overview of the legislation, existing regulations and the different health care policies regarding palliative care in seven European countries. Methods In 2008 an inventory of the organisation of palliative care was developed by the researchers of the Europall project. Included were two open questions about legislation, regulations, and health policy in palliative care. This questionnaire was completed using palliative care experts selected from Belgium, England, France, Germany, the Netherlands, Poland and Spain. Additionally, (grey) literature on palliative care health policy and regulations from the participating countries was collected to complete the inventory. Comparative analysis of country specific information was performed afterwards. Results In all countries palliative care regulations and policies existed (either in laws, royal decrees, or national policies). An explicit right to palliative care was mentioned in the Belgium, French and German law. In addition, access to palliative care was mentioned by all countries, varying from explicit regulations to policy intentions in national plans. Also, all countries had a national policy on palliative care, although sometimes mainly related to national cancer plans. Differences existed in policy regarding palliative care leave, advance directives, national funding, palliative care training, research, opioids and the role of volunteers. Conclusions Although all included European countries have policies on palliative care, countries largely differ in the presence of legislation and regulations on palliative care as well as the included topics. European healthcare policy recommendations should support palliative care access across Europe. PMID:23866928

Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology.

PubMed

Hay, Casey M; Lefkowits, Carolyn; Crowley-Matoka, Megan; Bakitas, Marie A; Clark, Leslie H; Duska, Linda R; Urban, Renata R; Creasy, Stephanie L; Schenker, Yael

2017-09-01

Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

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

PubMed

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

2018-01-01

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

Frequently Asked Questions (Palliative Care: Conversations Matter)

MedlinePlus

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

Developing a costing framework for palliative care services.

PubMed

Mosoiu, Daniela; Dumitrescu, Malina; Connor, Stephen R

2014-10-01

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.

Palliative care and neurology

PubMed Central

Boersma, Isabel; Miyasaki, Janis; Kutner, Jean

2014-01-01

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

Palliative care and neurology: time for a paradigm shift.

PubMed

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

2014-08-05

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

Perioperative Palliative Care Considerations for Surgical Oncology Nurses.

PubMed

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

2017-02-01

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

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

PubMed

Edwards, Asher; Nam, Samuel

2018-01-01

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

End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care.

PubMed

Shulman, Caroline; Hudson, Briony F; Low, Joseph; Hewett, Nigel; Daley, Julian; Kennedy, Peter; Davis, Sarah; Brophy, Niamh; Howard, Diana; Vivat, Bella; Stone, Patrick

2018-01-01

Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited. To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care. Thematic analysis of data collected using focus groups and interviews. Single homeless people ( n = 28), formerly homeless people ( n = 10), health- and social-care providers ( n = 48), hostel staff ( n = 30) and outreach staff ( n = 10). This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues. Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.

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

PubMed

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

2015-09-01

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

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA

PubMed Central

Selman, Lucy Ellen; Daveson, Barbara A.; Smith, Melinda; Johnston, Bridget; Ryan, Karen; Morrison, R. Sean; Pannell, Caty; McQuillan, Regina; de Wolf-Linder, Suzanne; Pantilat, Steven Z.; Klass, Lara; Meier, Diane; Normand, Charles; Higginson, Irene J.

2017-01-01

Abstract Background patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. Objective we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. Methods we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. Results analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients’ self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. Conclusions empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff–patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease. PMID:27810850

Exploring Education and Training Needs in Palliative Care among Family Physicians in Mumbai: A Qualitative Study.

PubMed

Damani, Anuja; Ghoshal, Arunangshu; Dighe, Manjiri; Dhiliwal, Sunil; Muckaden, Maryann

2018-01-01

Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients. This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes. FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC.

Exploring Education and Training Needs in Palliative Care among Family Physicians in Mumbai: A Qualitative Study

PubMed Central

Damani, Anuja; Ghoshal, Arunangshu; Dighe, Manjiri; Dhiliwal, Sunil; Muckaden, Maryann

2018-01-01

Context: Patients with chronic life-limiting conditions on palliative care (PC) prefer to be treated at home. Medical care by family physicians (FPs) reduces demand on costly and busy hospital facilities. Working of PC team in collaboration with FPs is thus helpful in home-based management of patients. Aims: This study aimed at exploring the extent of knowledge of FPs about PC and the need for additional training. Settings and Design: Semi-structured interviews were conducted with ten FPs from two suburbs of Mumbai, currently served by home care services of a tertiary cancer care center. Subjects and Methods: Data were digitally recorded, transcribed, and analyzed using exploratory analysis followed by content analysis to develop thematic codes. Results and Conclusions: FPs perceive PC as symptom control and psychological support helpful in managing patients with advanced life-limiting illnesses. Further training would help them in PC provision. Such training programs should preferably focus on symptom management and communication skills. There is a need for further research in designing a training module for FPs to get better understanding of the principles of PC. PMID:29736114

A Community Needs Assessment for the Development of an Interprofessional Palliative Care Training Curriculum.

PubMed

Coats, Heather; Paganelli, Tia; Starks, Helene; Lindhorst, Taryn; Starks Acosta, Anne; Mauksch, Larry; Doorenbos, Ardith

2017-03-01

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.

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

PubMed

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

2016-03-01

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

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

PubMed

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

2018-01-01

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

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

PubMed

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

2017-01-01

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

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

PubMed

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

2017-07-02

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

A palliative care needs assessment of rural hospitals.

PubMed

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

2013-06-01

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

"Doctors Shouldn't Underestimate the Power that they Have": NZ Doctors on the Care of the Dying Patient.

PubMed

Malpas, Phillipa Jean; Mitchell, Kay

2017-05-01

Rapidly aging populations and increased prevalence of chronic rather than acute illnesses have seen growing public and professional interest in medical decision making at the end of life and greater attention being paid to the factors that influence how individuals make such decisions. This study comprised 2 components: The first, a postal survey, based on the Remmelink questionnaire was sent in May 2013 to 3420 general practitioners (GPs) in New Zealand. Results from this component are reported elsewhere. The second component (reported here) sought information by inviting GPs to ring a free-phone number to be interviewed about their experiences caring for their dying patients. Interviews were recorded then transcribed with identifying information deleted to preserve anonymity. With an aging population, the provision of end-of-life care will increase in general practice. There is no doubt that hospice and specialist palliative care have transformed the quality of care for the dying and their families in New Zealand. However, while respondents in this study seemed realistic about what palliative care can and cannot achieve, patients and their families may have unrealistic expectations of both hospice and palliative medicine. Many GPs appear confused over the legality of the assistance they provide to the terminally ill, concerned that actions such as increasing medication to address refractory symptoms, or stopping food and fluids may put them at risk of legal censure when they foresee that their actions may hasten death.

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

PubMed Central

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

2017-01-01

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

Implementing the first regional hospice palliative care program in Ontario: the Champlain region as a case study.

PubMed

Pereira, José; Contant, Jocelyne; Barton, Gwen; Klinger, Christopher

2016-07-26

Regionalization promotes planning and coordination of services across settings and providers to meet population needs. Despite the potential advantages of regionalization, no regional hospice palliative care program existed in Ontario, Canada, as of 2010. This paper describes the process and early results of the development of the first regional hospice palliative care program in Ontario. The various activities and processes undertaken and the formal agreements, policies and documents are described. A participative approach, started in April 2009, was used. It brought together over 26 health service providers, including residential hospices, a palliative care unit, community and hospital specialist consultation teams, hospitals, community health and social service agencies (including nursing), individual health professionals, volunteers, patients and families. An extensive stakeholder and community vetting process was undertaken that included work groups (to explore key areas such as home care, the hospital sector, hospice and palliative care unit beds, provision of care in rural settings, e-health and education), a steering committee and input from over 320 individuals via e-mail and town-halls. A Transitional Leadership Group was elected to steer the implementation of the Regional Program over the summer of 2010. This group established the by-laws and details regarding the governance structure of the Regional Program, including its role, responsibilities, reporting structures and initial performance indicators that the Local Health Integration Network (LHIN) approved. The Regional Program was formally established in November 2010 with a competency-based Board of 14 elected members to oversee the program. Early work involved establishing standards and performance indicators for the different sectors and settings in the region, and identifying key clinical needs such as the establishment of more residential hospice capacity in Ottawa and a rural framework to ensure access for citizens in rural and remote regions. Challenges encountered are explored as are the process enablers and facilitators. The paper views the development and implementation process from the perspectives of several frameworks and models related to change management. Following on several initial achievements, the long term success of the Regional Program will depend on consolidating the early gains and demonstrating changes based on key measurable outcomes.

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

PubMed

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

2017-05-01

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

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

PubMed

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

2018-02-01

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

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

PubMed Central

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

2016-01-01

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

'Being a conduit' between hospital and home: stakeholders' views and perceptions of a nurse-led Palliative Care Discharge Facilitator Service in an acute hospital setting.

PubMed

Venkatasalu, Munikumar Ramasamy; Clarke, Amanda; Atkinson, Joanne

2015-06-01

To explore and critically examine stakeholders' views and perceptions concerning the nurse-led Palliative Care Discharge Service in an acute hospital setting and to inform sustainability, service development and future service configuration. The drive in policy and practice is to enable individuals to achieve their preferred place of care during their last days of life. However, most people in UK die in acute hospital settings against their wishes. To facilitate individuals' preferred place of care, a large acute hospital in northeast England implemented a pilot project to establish a nurse-led Macmillan Palliative Care Discharge Facilitator Service. A pluralistic evaluation design using qualitative methods was used to seek stakeholders' views and perceptions of this service. In total, 12 participants (five bereaved carers and seven health professionals) participated in the evaluation. Semi-structured interviews were conducted with bereaved carers who used this service for their relatives. A focus group and an individual interview were undertaken with health professionals who had used the service since its inception. Individual interviews were also conducted with the Discharge Facilitator and service manager. Analysis of all data was guided by Framework Analysis. Four key themes emerged relating to the role of the Discharge Facilitator Service: achieving preferred place of care; the Discharge Facilitator as the 'conduit' between hospital and community settings; delays in hospital discharge and stakeholders' perceptions of the way forward for the service. The Discharge Facilitator Service acted as a reliable resource and support for facilitating the fast-tracking of end-of-life patients to their preferred place of care. Future planning for hospital-based palliative care discharge facilitating services need to consider incorporating strategies that include: increased profile of the service, expansion of service provision and the Discharge Facilitator's earlier involvement in the discharge process. © 2015 John Wiley & Sons Ltd.

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

PubMed

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

2017-06-01

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

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

PubMed

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

2017-07-01

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

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

PubMed

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

2018-02-01

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

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

PubMed

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

2004-02-01

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

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

PubMed

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

2018-01-01

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

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

PubMed Central

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

2015-01-01

Purpose The prognosis for the majority of patients with cancer in Kenya is poor, with most patients presenting with advanced disease. In addition, many patients are unable to afford the optimal therapies required. Therefore, palliative care is an essential part of comprehensive cancer care. This study reviews the implementation of a palliative care service based at the Moi Teaching and Referral Hospital in Eldoret, Kenya, and describes the current scope and challenges of providing palliative care services in an East African tertiary public referral hospital. Methods This is a review of the palliative care clinical services at the only tertiary public referral hospital in western Kenya from January 2012 through September 2014. Palliative care team members documented each patient's encounter on standardized palliative care assessment forms; data were then entered into the Academic Model Providing Access to Health Care (AMPATH)-Oncology database. Interviews were also conducted to identify current challenges and opportunities for program improvement. Results This study documents the implementation of a palliative care service line in Eldoret, Kenya. Barriers to providing optimal palliative cancer care include distance to pharmacies that stock opioids, limited selection of opioid preparations, education of health care workers in palliative care, access to palliative chemoradiation, and limited availability of outpatient and inpatient hospice services. Conclusion Palliative care services in Eldoret, Kenya, have become a key component of its comprehensive cancer treatment program. PMID:28804768

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

PubMed

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

2015-10-01

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

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

PubMed

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

2014-09-01

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

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

PubMed

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

2015-03-01

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

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

PubMed Central

Maciver, Jane; Ross, Heather J.

2018-01-01

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

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

PubMed

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

2010-11-01

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

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

PubMed

McCarroll, Caitlin Marie

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

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

PubMed

Bond, Melissa J; Knopp, Andrea

2018-06-02

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

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

PubMed

Kizawa, Yoshiyuki; Yamamoto, Ryo

2017-07-01

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

Palliative Care in Heart Failure.

PubMed

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

2018-04-19

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

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

PubMed

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

2018-04-01

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

Evaluation of clinical pharmacy services offered for palliative care patients in Qatar.

PubMed

Wilby, Kyle John; Mohamad, Alaa Adil; AlYafei, Sumaya AlSaadi

2014-09-01

Palliative care is an emerging concept in the countries of the Gulf Cooperation Council, a political and economic union of Arab states bordering the Persian Gulf, namely Bahrain, Kuwait, Oman, Qatar, Saudi Arabia, and the United Arab Emirates. Clinical pharmacy services have not yet been evaluated in this region. The objectives of this study were to create a baseline inventory of clinical pharmacy interventions in palliative care and to assess the perceived importance of interventions made. This was a prospective, single-center characterization study. Interventions were documented from September 30 to December 1, 2013. They were characterized into predetermined categories and analyzed using descriptive statistics. Physician acceptance rate and intervention rate per patient were calculated. Classification categories were sent to 10 practicing pharmacists in each of Qatar and Canada, who ranked the categories on the basis of perceived importance. A total of 96 interventions were documented, giving 3 interventions per patient and an acceptance rate of 81%. Discontinuing therapy (29%), initiating therapy (25%), and provision of education/counseling (13.5%) were most common. No differences were found between rankings from pharmacists in Qatar or Canada. Clinical pharmacy interventions are frequent, and those relating to alterations in drug therapy are most common. Interventions align with the perceived importance from pharmacists in both Qatar and Canada.

Parental decision-making on utilisation of out-of-home respite in children's palliative care: findings of qualitative case study research - a proposed new model.

PubMed

Ling, J; Payne, S; Connaire, K; McCarron, M

2016-01-01

Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research. Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted. Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home. Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions. © 2015 John Wiley & Sons Ltd.

Palliative Care in Kazakhstan.

PubMed

Kunirova, Gulnara; Shakenova, Ainur

2018-02-01

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

What is palliative care?

MedlinePlus

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

Palliative Care in Advanced Cancer Patients: How and When?

PubMed Central

Yennurajalingam, Sriram

2012-01-01

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

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

PubMed

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

2018-05-04

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

Barriers to Access to Palliative Care

PubMed Central

Hawley, Pippa

2017-01-01

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

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

PubMed

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

2017-10-01

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

Self-Perceived End-of-Life Care Competencies of Health-Care Providers at a Large Academic Medical Center.

PubMed

Montagnini, Marcos; Smith, Heather M; Price, Deborah M; Ghosh, Bidisha; Strodtman, Linda

2018-01-01

In the United States, most deaths occur in hospitals, with approximately 25% of hospitalized patients having palliative care needs. Therefore, the provision of good end-of-life (EOL) care to these patients is a priority. However, research assessing staff preparedness for the provision of EOL care to hospitalized patients is lacking. To assess health-care professionals' self-perceived competencies regarding the provision of EOL care in hospitalized patients. Descriptive study of self-perceived EOL care competencies among health-care professionals. The study instrument (End-of-Life Questionnaire) contains 28 questions assessing knowledge, attitudes, and behaviors related to the provision of EOL care. Health-care professionals (nursing, medicine, social work, psychology, physical, occupational and respiratory therapist, and spiritual care) at a large academic medical center participated in the study. Means were calculated for each item, and comparisons of mean scores were conducted via t tests. Analysis of variance was used to identify differences among groups. A total of 1197 questionnaires was completed. The greatest self-perceived competency was in providing emotional support for patients/families, and the least self-perceived competency was in providing continuity of care. When compared to nurses, physicians had higher scores on EOL care attitudes, behaviors, and communication. Physicians and nurses had higher scores on most subscales than other health-care providers. Differences in self-perceived EOL care competencies were identified among disciplines, particularly between physicians and nurses. The results provide evidence for assessing health-care providers to identify their specific training needs before implementing educational programs on EOL care.

Defining palliative care in cystic fibrosis: A Delphi study.

PubMed

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

2018-05-01

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

Priorities for Evaluating Palliative Care Outcomes in Intensive Care Units.

PubMed

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

2015-09-01

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

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

PubMed

Runacres, Fiona; Gregory, Heidi; Ugalde, Anna

2017-07-01

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

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

PubMed

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

2016-08-15

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

Five policies to promote palliative care for patients with ESRD.

PubMed

Tamura, Manjula Kurella; Meier, Diane E

2013-10-01

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

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

PubMed

Blackford, Jeanine; Street, Annette F

2013-03-01

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

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

PubMed

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

2014-02-01

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

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

PubMed

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

2014-09-01

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

International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide.

PubMed

De Lima, Liliana; Woodruff, Roger; Pettus, Katherine; Downing, Julia; Buitrago, Rosa; Munyoro, Esther; Venkateswaran, Chitra; Bhatnagar, Sushma; Radbruch, Lukas

2017-01-01

Reports about regulations and laws on Euthanasia and Physician Assisted Suicide (PAS) are becoming increasingly common in the media. Many groups have expressed opposition to euthanasia and PAS while those in favor argue that severely chronically ill and debilitated patients have a right to control the timing and manner of their death. Others argue that both PAS and euthanasia are ethically legitimate in rare and exceptional cases. Given that these discussions as well as the new and proposed laws and regulations may have a powerful impact on patients, caregivers, and health care providers, the International Association for Hospice and Palliative Care (IAHPC) has prepared this statement. To describe the position of the IAHPC regarding Euthanasia and PAS. The IAHPC formed a working group (WG) of seven board members and two staff officers who volunteered to participate in this process. An online search was performed using the terms "position statement", "euthanasia" "assisted suicide" "PAS" to identify existing position statements from health professional organizations. Only statements from national or pan-national associations were included. Statements from seven general medical and nursing associations and statements from seven palliative care organizations were identified. A working document including a summary of the different position statements was prepared and based on these, an initial draft was prepared. Online discussions among the members of the WG took place for a period of three months. The differences were reconciled by email discussions. The resulting draft was shared with the full board. Additional comments and suggestions were incorporated. This document represents the final version approved by the IAHPC Board of Directors. IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. In countries and states where euthanasia and/or PAS are legal, IAHPC agrees that palliative care units should not be responsible for overseeing or administering these practices. The law or policies should include provisions so that any health professional who objects must be allowed to deny participating.

International Association for Hospice and Palliative Care Position Statement: Euthanasia and Physician-Assisted Suicide

PubMed Central

Woodruff, Roger; Pettus, Katherine; Downing, Julia; Buitrago, Rosa; Munyoro, Esther; Venkateswaran, Chitra; Bhatnagar, Sushma; Radbruch, Lukas

2017-01-01

Abstract Background: Reports about regulations and laws on Euthanasia and Physician Assisted Suicide (PAS) are becoming increasingly common in the media. Many groups have expressed opposition to euthanasia and PAS while those in favor argue that severely chronically ill and debilitated patients have a right to control the timing and manner of their death. Others argue that both PAS and euthanasia are ethically legitimate in rare and exceptional cases. Given that these discussions as well as the new and proposed laws and regulations may have a powerful impact on patients, caregivers, and health care providers, the International Association for Hospice and Palliative Care (IAHPC) has prepared this statement. Purpose: To describe the position of the IAHPC regarding Euthanasia and PAS. Method: The IAHPC formed a working group (WG) of seven board members and two staff officers who volunteered to participate in this process. An online search was performed using the terms “position statement”, “euthanasia” “assisted suicide” “PAS” to identify existing position statements from health professional organizations. Only statements from national or pan-national associations were included. Statements from seven general medical and nursing associations and statements from seven palliative care organizations were identified. A working document including a summary of the different position statements was prepared and based on these, an initial draft was prepared. Online discussions among the members of the WG took place for a period of three months. The differences were reconciled by email discussions. The resulting draft was shared with the full board. Additional comments and suggestions were incorporated. This document represents the final version approved by the IAHPC Board of Directors. Result: IAHPC believes that no country or state should consider the legalization of euthanasia or PAS until it ensures universal access to palliative care services and to appropriate medications, including opioids for pain and dyspnea. Conclusion: In countries and states where euthanasia and/or PAS are legal, IAHPC agrees that palliative care units should not be responsible for overseeing or administering these practices. The law or policies should include provisions so that any health professional who objects must be allowed to deny participating. PMID:27898287

Enhancing the quality of life for palliative care cancer patients in Indonesia through family caregivers: a pilot study of basic skills training.

PubMed

Kristanti, Martina Sinta; Setiyarini, Sri; Effendy, Christantie

2017-01-17

Palliative care in Indonesia is problematic because of cultural and socio-economic factors. Family in Indonesia is an integral part of caregiving process in inpatient and outpatient settings. However, most families are not adequately prepared to deliver basic care for their sick family member. This research is a pilot project aiming to evaluate how basic skills training (BST) given to family caregivers could enhance the quality of life (QoL) of palliative care cancer patients in Indonesia. The study is a prospective quantitative with pre and post-test design. Thirty family caregivers of cancer patients were trained in basic skills including showering, washing hair, assisting for fecal and urinary elimination and oral care, as well as feeding at bedside. Patients' QoL were measured at baseline and 4 weeks after training using EORTC QLQ C30. Hypothesis testing was done using related samples Wilcoxon Signed Rank. A paired t-test and one-way ANOVA were used to check in which subgroups was the intervention more significant. The intervention showed a significant change in patients' global health status/QoL, emotional and social functioning, pain, fatigue, dyspnea, insomnia, appetite loss, constipation and financial hardship of the patients. Male patient's had a significant effect on global health status (qol) (p = 0.030); female patients had a significant effect on dyspnea (p = 0.050) and constipation (p = 0.038). Younger patients had a significant effect in global health status/QoL (p = 0.002). Patients between 45 and 54 years old had significant effect on financial issue (p = 0.039). Caregivers between 45 and 54 years old had significant effect on patients' dyspnea (p = 0.031). Basic skills training for family caregivers provided some changes in some aspects of QoL of palliative cancer patients. The intervention showed promises in maintaining the QoL of cancer patients considering socio-economic and cultural challenges in the provision of palliative care in Indonesia.

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

PubMed

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

2015-10-01

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

Current Status of Palliative Care, Education, and Research

PubMed Central

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

2010-01-01

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

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

PubMed

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

2017-09-01

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

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

PubMed

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

2018-01-01

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

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

PubMed

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

2017-06-01

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

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

PubMed

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

2016-05-01

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

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis.

PubMed

Hosie, Annmarie; Agar, Meera; Lobb, Elizabeth; Davidson, Patricia M; Phillips, Jane

2017-10-01

Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting. Copyright © 2017 Elsevier Ltd. All rights reserved.

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

PubMed

Downar, James

2018-01-01

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

The Changing Role of Palliative Care in the ICU

PubMed Central

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

2015-01-01

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

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

PubMed

Lentz, Judy C

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

Palliative Care in Latin America from the Professional Perspective: A SWOT Analysis.

PubMed

Pastrana, Tania; Centeno, Carlos; De Lima, Liliana

2015-05-01

The development of palliative care (PC) in Latin America (LA) has been slow compared to other regions. A Strengths, Weaknesses, Opportunities, and Threats (SWOT) analysis may contribute to the identification of barriers and successful strategies. The study's objective was to conduct a SWOT analysis of the development of PC in LA from the PC professional perspective. Experts from 19 countries of the region were selected in collaboration with national associations. Specific questions were included in the Latin American Association for Palliative Care (ALCP) Atlas of Palliative Care cross-survey 2012. Content analysis was conducted categorizing responses in a SWOT framework. Descriptive and correlation analyses were performed. A total of 577 statements were provided. Among the Strengths were integration into health systems and increasing number of professionals with PC training. Among weaknesses were lack of national PC programs, limited connection between policymakers and professionals, and barriers in the availability of opioids. Opportunities were increased awareness of policymakers and higher interest of students and professionals. Threats were competing funding for other services and medications, limited interest of the pharmaceutical industry in producing affordable opioid medications, and emphasis by the media on opioid diversion and abuse. Comments were categorized under (1) health policy, (2) education and research, (3) service provision, (4) opioid availability, and (5) advocacy. A moderately positive correlation was found (R=0.4 in both) between the ALCP development index and the number of positive/negative factors mentioned by country. A SWOT framework is applicable in a situational analysis and helps to identify common aspects among the countries and key elements in the development of PC in Latin America.

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

PubMed

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

2017-07-01

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

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

PubMed

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

2010-12-01

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

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

PubMed

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

2017-02-01

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

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2017-12-01

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

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

PubMed

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

2018-05-01

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

Perceptions of palliative care among patients with advanced cancer and their caregivers

PubMed Central

Zimmermann, Camilla; Swami, Nadia; Krzyzanowska, Monika; Leighl, Natasha; Rydall, Anne; Rodin, Gary; Tannock, Ian; Hannon, Breffni

2016-01-01

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

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

PubMed

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

2018-02-01

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

Palliative Care

MedlinePlus

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

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

PubMed

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

2015-12-01

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

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

PubMed

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

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

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

PubMed Central

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

2017-01-01

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

The Worldwide Hospice Palliative Care Alliance.

PubMed

Connor, Stephen R; Gwyther, Elizabeth

2018-02-01

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

The importance and provision of oral hygiene in surgical patients.

PubMed

Ford, Samuel J

2008-10-01

The provision of mouth care on the general surgical ward and intensive care setting has recently gained momentum as an important aspect of patient care. Oropharyngeal morbidity can cause pain and disordered swallowing leading to reluctance in commencing or maintaining an adequate dietary intake. On the intensive care unit, aside from patient discomfort and general well-being, oral hygiene is integral to the prevention of ventilator-associated pneumonia. Chlorhexidine (0.2%) is widely used to decrease oral bacterial loading, dental bacterial plaque and gingivitis. Pineapple juice has gained favour as a salivary stimulant in those with a dry mouth or coated tongue. Tooth brushing is the ideal method of promoting oral hygiene. Brushing is feasible in the vast majority, although access is problematic in ventilated patients. Surgical patients undergoing palliative treatment are particularly prone to oral morbidity that may require specific but simple remedies. Neglect of basic aspects of patient care, typified by poor oral hygiene, can be detrimental to surgical outcome.

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

PubMed

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

2018-06-07

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

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

PubMed

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

2016-07-22

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

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

PubMed

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

2018-05-01

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

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

PubMed

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

2016-02-01

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

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

PubMed

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

2013-11-01

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

What is Pediatric Palliative Care?

MedlinePlus

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

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

PubMed

De Lima, Liliana; Radbruch, Lukas

2018-02-01

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

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

PubMed

Jonen-Thielemann, I

1998-01-01

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

Development, modelling, and pilot testing of a complex intervention to support end-of-life care provided by Danish general practitioners.

PubMed

Winthereik, Anna Kirstine; Neergaard, Mette Asbjoern; Jensen, Anders Bonde; Vedsted, Peter

2018-06-20

Most patients in end-of-life with life-threatening diseases prefer to be cared for and die at home. Nevertheless, the majority die in hospitals. GPs have a pivotal role in providing end-of-life care at patients' home, and their involvement in the palliative trajectory enhances the patient's possibility to stay at home. The aim of this study was to develop and pilot-test an intervention consisting of continuing medical education (CME) and electronic decision support (EDS) to support end-of-life care in general practice. We developed an intervention in line with the first phases of the guidelines for complex interventions drawn up by the Medical Research Council. Phase 1 involved the development of the intervention including identification of key barriers to provision of end-of-life care for GPs and of facilitators of change. Furthermore the actual modelling of two components: CME meeting and EDS. Phase 2 focused on pilot-testing and intervention assessment by process evaluation. In phase 1 lack of identification of patients at the end of life and limited palliative knowledge among GPs were identified as barriers. The CME meeting and the EDS were developed. The CME meeting was a four-hour educational meeting performed by GPs and specialists in palliative care. The EDS consisted of two parts: a pop-up window for each patient with palliative needs and a list of all patients with palliative needs in the practice. The pilot testing in phase 2 showed that the CME meeting was performed as intended and 120 (14%) of the GPs in the region attended. The EDS was integrated in existing electronic records but was shut down early for external reasons; 50 (5%) GPs signed up. The pilot-testing demonstrated a need to strengthen the implementation as attending rate was low in the current set-up. We developed a complex intervention to support GPs in providing end-of-life care. The pilot-test showed general acceptance of the CME meetings. The EDS was shut down early and needs further evaluation before examining the whole intervention in a larger study, where evaluation could be based on patient-related outcomes and impact on end-of-life care. Clinicaltrials.gov ( NCT02050256 ) January 30, 2014.

Valued aspects of primary palliative care: content analysis of bereaved carers' descriptions.

PubMed

Grande, Gunn E; Farquhar, Morag C; Barclay, Stephen Ig; Todd, Chris J

2004-10-01

Informal carers provide the bulk of palliative home care. They largely rely on general practitioners (GPs) and district nurses to support them in this role, yet little is known about what carers themselves consider important in this support. To identify what informal carers valued in the palliative support provided by GPs and district nurses by using carers' own descriptions of such support. Retrospective interviews. Primary care in Cambridgeshire. Semi-structured interviews with bereaved carers of 48 patients with cancer and 12 patients with non-cancer diagnoses. Content analysis of carers' evaluative descriptions of GP and district nurse support. The accessibility of the GP and district nurse emerged as the most important aspect of support. Enlistment of help from other agencies was also extensively mentioned, together with provision of equipment. Attitude or approach during interactions, and relationship with the professional were important, particularly regarding GP support, whereas support for the carer, information, and symptom control were mentioned less often. Data suggested that support was not as good for older patients (> or =75 years), but this finding requires further investigation. Results largely confirmed findings of previous, quantitative research and the importance of a patient-centred approach. What emerged most strongly, however, was the central importance of accessibility of support services for lay carers responsible for end-of-life home care. This mainly concerned GP and district nurse support, but accessibility of additional care and equipment were also important. In short, carers' main focus was the basic support that enabled them to sustain care in the home.

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

PubMed

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

2017-10-01

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

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

PubMed

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

2013-12-01

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

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

PubMed

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

2018-03-23

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

Factors influencing palliative care. Qualitative study of family physicians' practices.

PubMed Central

Brown, J. B.; Sangster, M.; Swift, J.

1998-01-01

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

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

PubMed

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

2014-09-01

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

Qualitative Research in Palliative Care: Applications to Clinical Trials Work.

PubMed

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

2017-08-01

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.

Enhancing palliative care delivery in a regional community in Australia.

PubMed

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

2006-08-01

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

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

PubMed

Bassah, Nahyeni; Seymour, Jane; Cox, Karen

2014-01-01

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

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

PubMed

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

2015-05-29

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

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

PubMed

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

2014-11-01

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

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

PubMed

Busolo, David S; Woodgate, Roberta L

2016-06-01

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

Reducing inequalities in access to health care: developing a toolkit through action research.

PubMed

Goyder, E C; Blank, L; Ellis, E; Furber, A; Peters, J; Sartain, K; Massey, C

2005-10-01

Healthcare organisations are expected both to monitor inequalities in access to health services and also to act to improve access and increase equity in service provision. Locally developed action research projects with an explicit objective of reducing inequalities in access. Eight different health care services in the Yorkshire and Humber region, including community based palliative care, general practice asthma care, hospital based cardiology clinics, and termination of pregnancy services. Changes in service provision, increasing attendance rates in targeted groups. Local teams identified the population concerned and appropriate interventions using both published and grey literature. Where change to service provision was achieved, local data were collected to monitor the impact of service change. A number of evidence based changes to service provision were proposed and implemented with variable success. Service uptake increased in some of the targeted populations. Interventions to improve access must be sensitive to local settings and need both practical and managerial support to succeed. It is particularly difficult to improve access effectively if services are already struggling to meet current demand. Key elements for successful interventions included effective local leadership, identification of an intervention which is both evidence based and locally practicable, and identification of additional resources to support increased activity. A "toolkit" has been developed to support the identification and implementation of appropriate changes.

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

PubMed

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

2018-06-01

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

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

PubMed

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

2017-01-01

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

Integrating palliative care into the trajectory of cancer care

PubMed Central

Hui, David; Bruera, Eduardo

2016-01-01

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

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

PubMed

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

2017-01-01

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

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

PubMed

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

2018-01-01

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

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

PubMed

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

2018-05-01

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

Delivery strategies to optimize resource utilization and performance status for patients with advanced life-limiting illness: results from the "palliative care trial" [ISRCTN 81117481].

PubMed

Abernethy, Amy P; Currow, David C; Shelby-James, Tania; Rowett, Debra; May, Frank; Samsa, Gregory P; Hunt, Roger; Williams, Helena; Esterman, Adrian; Phillips, Paddy A

2013-03-01

Evidence-based approaches are needed to improve the delivery of specialized palliative care. The aim of this trial was to improve on current models of service provision. This 2×2×2 factorial cluster randomized controlled trial was conducted at an Australian community-based palliative care service, allowing three simultaneous comparative effectiveness studies. Participating patients were newly referred adults, experiencing pain, and who were expected to live >48 hours. Patients enrolled with their general practitioners (GPs) and were randomized three times: 1) individualized interdisciplinary case conference including their GP vs. control, 2) educational outreach visiting for GPs about pain management vs. control, and 3) structured educational visiting for patients/caregivers about pain management vs. control. The control condition was current palliative care. Outcomes included Australia-modified Karnofsky Performance Status (AKPS) and pain from 60 days after randomization and hospitalizations. There were 461 participants: mean age 71 years, 50% male, 91% with cancer, median survival 179 days, and median baseline AKPS 60. Only 47% of individuals randomized to the case conferencing intervention received it; based on a priori-defined analyses, 32% of participants were included in final analyses. Case conferencing reduced hospitalizations by 26% (least squares means hospitalizations per patient: case conference 1.26 [SE 0.10] vs. control 1.70 [SE 0.13], P=0.0069) and better maintained performance status (AKPS case conferences 57.3 [SE 1.5] vs. control 51.7 [SE 2.3], P=0.0368). Among patients with declining function (AKPS <70), case conferencing and patient/caregiver education better maintained performance status (AKPS case conferences 55.0 [SE 2.1] vs. control 46.5 [SE 2.9], P=0.0143; patient/caregiver education 54.7 [SE 2.8] vs. control 46.8 [SE 2.1], P=0.0206). Pain was unchanged. GP education did not change outcomes. A single case conference added to current specialized community-based palliative care reduced hospitalizations and better maintained performance status. Comparatively, patient/caregiver education was less effective; GP education was not effective. Copyright © 2013 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

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

PubMed

Supiano, Katherine P

2013-01-01

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

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

PubMed

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

2017-08-01

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

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

PubMed

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

2016-09-01

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

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2018-01-01

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

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

PubMed Central

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

2017-01-01

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

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

PubMed

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

2017-10-01

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

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

PubMed

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

2018-02-01

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

Embedding a Palliative Approach in Nursing Care Delivery

PubMed Central

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

2017-01-01

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

Grief and Palliative Care: Mutuality

PubMed Central

Moon, Paul J

2013-01-01

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

Palliative and end of life care in solid organ transplantation.

PubMed

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

2017-12-01

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

Palliative care in Argentina: perspectives from a country in crisis.

PubMed

De Simone, Gustavo G

2003-01-01

Argentina is a large South American country with a high prevalence of chronic disease-related mortality and a clear need for implementation of palliative care. Primary concerns related to palliative care are cultural, socio-economic and educational. Increasing poverty, patients and families receiving inadequate information about their diagnosis or prognosis, drug availability and costs, and insufficient knowledge by health care providers are obstacles to palliative care. Palliative care programs are developing throughout the country and methods by which they are meeting their needs are described. Several Argentinean palliative care initiatives are described and the role of the Pallium Latinomérica training program is discussed.

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

PubMed

Bowman, Brynn; Meier, Diane E

2018-02-01

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

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

PubMed

Crul, B J; van Weel, C

2001-10-20

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

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

PubMed

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

2016-06-01

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

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

PubMed

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

2016-01-01

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

Does hospital at home for palliative care facilitate death at home? Randomised controlled trial

PubMed Central

Grande, Gunn E; Todd, Chris J; Barclay, Stephen I G; Farquhar, Morag C

1999-01-01

Objective To evaluate the impact on place of death of a hospital at home service for palliative care. Design Pragmatic randomised controlled trial. Setting Former Cambridge health district. Participants 229 patients referred to the hospital at home service; 43 randomised to control group (standard care), 186 randomised to hospital at home. Intervention Hospital at home versus standard care. Main outcome measures Place of death. Results Twenty five (58%) control patients died at home compared with 124 (67%) patients allocated to hospital at home. This difference was not significant; intention to treat analysis did not show that hospital at home increased the number of deaths at home. Seventy three patients randomised to hospital at home were not admitted to the service. Patients admitted to hospital at home were significantly more likely to die at home (88/113; 78%) than control patients. It is not possible to determine whether this was due to hospital at home itself or other characteristics of the patients admitted to the service. The study attained less statistical power than initially planned. Conclusion In a locality with good provision of standard community care we could not show that hospital at home allowed more patients to die at home, although neither does the study refute this. Problems relating to recruitment, attrition, and the vulnerability of the patient group make randomised controlled trials in palliative care difficult. While these difficulties have to be recognised they are not insurmountable with the appropriate resourcing and setting. Key messagesTerminally ill patients allocated to hospital at home were no more likely to die at home than patients receiving standard careAlthough the subsample of patients actually admitted to hospital at home did show a significant increase in likelihood of dying at home, whether this was due to the service itself or the characteristics of patients admitted to hospital at home could not be determinedThe need to balance ideal research design against the realities of evaluation of palliative care had the effect that the trial achieved less statistical power than originally plannedParticular problems were that many patients failed to receive the allocated intervention because of the unpredictable nature of terminal illness, inclusion of other service input alongside hospital at home, and the wide range of standard care availableThe trial illustrated problems associated with randomised controlled trials in palliative care, none of which are insurmountable but which require careful consideration and resourcing before future trials are planned PMID:10582932

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

PubMed

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

2018-02-01

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

Palliative Care in Cancer

MedlinePlus

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

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

PubMed

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

2016-06-01

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

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

PubMed

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

2017-10-01

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

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

PubMed

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

2018-02-01

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

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

PubMed

Bausewein, Claudia; Higginson, Irene J

2012-12-01

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

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

PubMed

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

2014-06-01

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

The dignified approach to care: a pilot study using the patient dignity question as an intervention to enhance dignity and person-centred care for people with palliative care needs in the acute hospital setting.

PubMed

Johnston, Bridget; Pringle, Jan; Gaffney, Marion; Narayanasamy, Melanie; McGuire, Margaret; Buchanan, Deans

2015-01-01

Providing person-centred, dignity-conserving care for hospitalised patients is central to many healthcare policies and essential to the provision of effective palliative care. The Patient Dignity Question (PDQ) "What do I need to know about you as a person to take the best care of you that I can?" was designed from empirical research on patients' perceptions of their dignity at end of life to help healthcare professionals (HCPs) understand the patient as a person. This mixed method pilot study was designed to inform a larger multisite study in the future. It tests the hypothesis that the PDQ intervention could be used to enhance a more person-centred climate for people with palliative care needs in the acute hospital setting, and provide evidence regarding its acceptability. Outcome measures pre and post intervention Person-centred Climate Questionnaire--patient version (PCQ-P), and the Consultation and Relational Empathy (CARE) measure; PDQ feedback questionnaires were used for all participants post intervention, in addition to qualitative interviews. 30 patients, 17 HCPs, and 4 family members participated. Results showed a positive correlation between higher PCQ-P scores and higher CARE scores, indicating that the PDQ can make improvements to a person-centred environment and levels of empathy perceived by patients. Individual results from the PCQ-P and the CARE indicated overall improvements in the majority of fields. The PDQ supported disclosure of information previously unknown to HCPs, has implications for improving person-centred care. Positive results from PDQ feedback questionnaires were received from all participants. Qualitative findings indicated patients' appreciation of staff (Attributes and attitudes), that patients wanted staff to have awareness of them (Know me as a person), take the time to talk, and work flexibly, to allow for patient individuality (Time and place). The PDQ has potential to improve patients' perceptions of care, and HCP attitudes. Furthermore, it was well received by participants. The PDQ could be incorporated into clinical practice for the care of palliative care patients in the acute setting to the benefit of personalized and dignified care. Further research using the PDQ across wider geographical areas, and more diverse settings, would be beneficial.

Primary palliative Care in General Practice - study protocol of a three-stage mixed-methods organizational health services research study.

PubMed

Ewertowski, Helen; Tetzlaff, Fabian; Stiel, Stephanie; Schneider, Nils; Jünger, Saskia

2018-01-30

The focus of this project is on improving the provision of primary palliative care (PC) by general practitioners (GPs). While approximately 10-15% of the incurable, seriously ill or dying people will be in need of specialist PC, the vast majority can be adequately treated within generalist care. The strengthening of the GP's role in PC, as well as ensuring close collaboration between specialist PC services and GPs have been identified as top priorities for the improvement of PC in Germany. Despite healthcare policy actions, diverse obstacles still exist to successful implementation of primary PC on a structural, process, and economic level. Therefore, this project aims at addressing barriers and facilitators to primary PC delivery in general practice in Germany. The study follows a three-step approach; first, it aims at systematically analyzing barriers and facilitators to primary PC provision by GPs. Second, based on these outcomes, a tailored intervention package will be developed to enhance the provision of primary PC by GPs. Third, the intervention package will be implemented and evaluated in practice. The expected outcome will be an evidence-based model for successful implementation of primary PC delivery tailored to the German healthcare system, followed by a strategic action plan on how to improve current practice both on a local level and nationally. The first step of the project has been partly completed at the time of writing. The chosen methodologies of four sub-projects within this first step have opened up different advantages and disadvantages for the data collection. In sum of all sub-projects, the different methodologies and target groups contributed valuable information to the systematic analysis of barriers and facilitators to primary PC provision by GPs. The study (BMBF-FK 01 GY 1610) was retrospectively registered at the German Clinical Trials Register (Deutsches Register Klinischer Studien) (Registration N° DRKS00011821 ; date of registration: December 04th 2017) and at the German Register of health care research (Versorgungsforschung Deutschland - Datenbank) (Registration N° VfD_ALLPRAX_16_003817 ; date of registration: March 30th 2017).

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

PubMed

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

2009-10-01

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

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

PubMed

Rabow, Michael W; Pantilat, Steven Z; Kerr, Kathleen; Enguidanos, Susan; Ferrell, Bruce; Goldstein, Rebecca; Pankratz, Charles; Picchi, Tina; Rosenfeld, Kenneth E; Stone, Susan C

2010-10-01

To develop and grow most effectively, palliative care programs must consider how best to align their mission with that of their institution. To do so, programs must identify their institutional mission and needs, what palliative care can do to address those needs given available resources, and how the palliative care team can measure and document its value. Such an approach encourages the palliative care team to think strategically and to see themselves and their service as a solution to issues and concerns within the institution. It also helps a palliative care team decide which, among many potential opportunities and possible initiatives, is the one most likely to be supported by the institution and have a recognized and significant impact. We present five case studies to demonstrate how successful programs identify and address institutional needs to create opportunities for palliative care program growth. These case studies can serve as models for other programs seeking to develop or expand their palliative care services.

Palliative Care Use Among Patients With Solid Cancer Tumors: A National Cancer Data Base Study.

PubMed

Osagiede, Osayande; Colibaseanu, Dorin T; Spaulding, Aaron C; Frank, Ryan D; Merchea, Amit; Kelley, Scott R; Uitti, Ryan J; Ailawadhi, Sikander

2018-07-01

Palliative care has been increasingly recognized as an important part of cancer care but remains underutilized in patients with solid cancers. There is a current gap in knowledge regarding why palliative care is underutilized nationwide. To identify the factors associated with palliative care use among deceased patients with solid cancer tumors. Using the 2016 National Cancer Data Base, we identified deceased patients (2004-2013) with breast, colon, lung, melanoma, and prostate cancer. Data were described as percentages. Associations between palliative care use and patient, facility, and geographic characteristics were evaluated through multivariate logistic regression. A total of 1 840 111 patients were analyzed; 9.6% received palliative care. Palliative care use was higher in the following patient groups: survival >24 months (17% vs 2%), male (54% vs 46%), higher Charlson-Deyo comorbidity score (16% vs 8%), treatment at designated cancer programs (74% vs 71%), lung cancer (76% vs 28%), higher grade cancer (53% vs 24%), and stage IV cancer (59% vs 13%). Patients who lived in communities with a greater percentage of high school degrees had higher odds of receiving palliative care; Central and Pacific regions of the United States had lower odds of palliative care use than the East Coast. Patients with colon, melanoma, or prostate cancer had lower odds of palliative care than patients with breast cancer, whereas those with lung cancer had higher odds. Palliative care use in solid cancer tumors is variable, with a preference for patients with lung cancer, younger age, known insurance status, and higher educational level.

A Health Economics Response to the Review of the Liverpool Care Pathway

PubMed Central

Coast, Joanna

2013-01-01

Abstract Background: In 2011 the Palliative Care Funding Review highlighted concerns about the funding, provision, and quality of care at the end of life. Two years on, an independent review of the Liverpool Care Pathway—prompted by a storm of negative media coverage— has raised concerns around a lack of funding, availability of support for the dying and their relatives, and patient centered care. There are recommendations to increase funding through a national tariff for palliative care services, address inconsistencies, and replace the Liverpool Care Pathway with individual end-of-life care plans. Objective: This paper explores the economic implications of the review's recommendations and links these to inadequacies with the current economic framework currently recommended for use in the United Kingdom by the National Institute for Health and Care Excellence, before highlighting aspects of ongoing research aimed at addressing these inadequacies. Methods: As well as the published report More Care, Less Pathway, we draw upon preliminary qualitative evidence from 19 semistructured interviews conducted with academics specializing in economics and/or end-of-life care. Conclusions: While there is a need for increased funding in the short term (highlighted in recent reviews), increasing funding to services that have little evidence base appears to be an irresponsible long-term strategy. Hence there should also be increased investment in research and increased emphasis in particular on developing economic tools to evaluate services. PMID:24199790

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

PubMed Central

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

2017-01-01

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

A matter of definition--key elements identified in a discourse analysis of definitions of palliative care.

PubMed

Pastrana, T; Jünger, S; Ostgathe, C; Elsner, F; Radbruch, L

2008-04-01

For more than 30 years, the term "palliative care" has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term 'palliative medicine' and 'palliative care' in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept 'palliative care'. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.

International palliative care: Middle East experience as a model for global palliative care.

PubMed

Hajjar, Ramzi R; Charalambous, Haris A; Baider, Lea; Silbermann, Michael

2015-05-01

Care for elderly people with life-limiting illness cannot be delivered primarily by geriatricians or palliative care practitioners. The role of these clinicians is to help carers become adept in palliative care medicine. In a culture in which family ties run deep, the offer of palliative care from an outsider may be met with suspicion. The family bond in the Middle East is strong, but the emotional response to terminal illness may push families to request futile treatments, and physicians to comply. When palliative care is well developed and well understood, it provides a viable alternative to such extreme terminal measures. Copyright © 2015 Elsevier Inc. All rights reserved.

Nationwide Survey of Palliative Care for Patients With Heart Failure in Japan.

PubMed

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

2018-04-25

Palliative care for heart failure (HF) patients is recommended in Western guidelines, so this study aimed to clarify the current status of palliative care for HF patients in Japan.Methods and Results:A survey was sent to all Japanese Circulation Society-authorized cardiology training hospitals (n=1,004) in August 2016. A total of 544 institutions (54%) returned the questionnaire. Of them, 527 (98%) answered that palliative care is necessary for patients with HF. A total of 227 (42%) institutions held a palliative care conference for patients with HF, and 79% of the institutions had <10 cases per year. Drug therapy as palliative care was administered at 403 (76%) institutions; morphine (87%) was most frequently used. Among sedatives, dexmedetomidine (33%) was administered more often than midazolam (29%) or propofol (20%). Regarding the timing of end-of-life care, most institutions (84%) reported having considered palliative care when a patient reached the terminal stage of HF. Most frequently, the reason for the decision at the terminal stage was "difficulty in discontinuing cardiotonics." A major impediment to the delivery of palliative care was "difficulty predicting an accurate prognosis." This large-scale survey showed the characteristics of palliative care for HF in Japan. The present findings may aid in the development of effective end-of-life care systems.

Palliative Care Psychiatry: Update on an Emerging Dimension of Psychiatric Practice

PubMed Central

Fairman, Nathan

2013-01-01

Palliative care psychiatry is an emerging subspecialty field at the intersection of Palliative Medicine and Psychiatry. The discipline brings expertise in understanding the psychosocial dimensions of human experience to the care of dying patients and support of their families. The goals of this review are (1) to briefly define palliative care and summarize the evidence for its benefits, (2) to describe the roles for psychiatry within palliative care, (3) to review recent advances in the research and practice of palliative care psychiatry, and (4) to delineate some steps ahead as this sub-field continues to develop, in terms of research, education, and systems-based practice. PMID:23794027

Extending specialist palliative care to all?

PubMed

Field, D; Addington-Hall, J

1999-05-01

How to extend palliative care services to all patients needing them is an issue currently exercising a range of bodies in contemporary Britain. This paper first considers the evidence regarding the needs of dying patients with long term conditions other than cancer and concludes that there is evidence to support their presumed need for palliative care. It then considers five potential barriers to extending specialist palliative care services to non-cancer patients in Britain. These are the skill base of current specialists in palliative care, difficulties in identifying candidates for specialist palliative care, the views of potential users of these services, resource implications and vested interests in present health service arrangements.

Changes in symptoms and pain intensity of cancer patients after enrollment in palliative care at home.

PubMed

Dumitrescu, Luminita; van den Heuvel-Olaroiu, Marinela; van den Heuvel, Wim J A

2007-11-01

This study describes the activities and interventions carried out by an at-home palliative care team treating cancer patients who died within two years of being enrolled in a palliative care program. It analyzes which changes in symptoms and pain occurred and which sociodemographic and medical characteristics were related to these changes. The analysis is based on 102 cancer patients. Data were collected through systematic registration during the palliative care process. At enrollment, patients were interviewed by the coordinating general practitioner concerning their sociodemographic background, medical history, psychological status, and symptoms. During the palliative care process, symptoms and functioning of the patients were recorded by the physician and nurses. The results show that cancer patients enrolled in palliative care at home have many symptoms, often associated with metastatic disease and comorbidities. The palliative care teams delivered frequent and various interventions. The number of symptoms decreased considerably, as did pain intensity and the intensity of other symptoms. Patients living in urban areas and with low income particularly benefited from a reduction in the number of symptoms they displayed. Cancer patients who needed palliative care benefited significantly from this at-home palliative care service.

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

PubMed

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

2018-04-27

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

From pregnancy to palliative care: advancing professional midwifery practice?

PubMed

Peacock, Valerie; Price, Jayne; Nurse, Sharon

2015-11-01

Historically midwives may have not considered palliative care as a part of their professional role. Enhanced technologies and antenatal screening have broadened the boundaries of care. However do midwives truly embrace the philosophy of palliative care into their practice? This paper presents the discussion round a case study that demonstrates the evolving area of advanced practice: perinatal palliative care. What we highlight is that midwives in fact have an important collaborative role to play in ensuring that palliative care for the baby and family starts as soon as a life-limiting condition is recognised, thus ensuring best care and support are provided for those parents and families for whom pregnancy sadly leads to palliative care. Five key lessons for practice are outlined.

An Australian casemix classification for palliative care: technical development and results.

PubMed

Eagar, Kathy; Green, Janette; Gordon, Robert

2004-04-01

To develop a palliative care casemix classification for use in all settings including hospital, hospice and home-based care. 3866 palliative care patients who, in a three-month period, had 4596 episodes of care provided by 58 palliative care services in Australia and New Zealand. A detailed clinical and service utilization profile was collected on each patient with staff time and other resources measured on a daily basis. Each day of care was costed using actual cost data from each study site. Regression tree analysis was used to group episodes of care with similar costs and clinical characteristics. In the resulting classification, the Australian National Sub-acute and Non-acute Patient (AN-SNAP) Classification Version 1, the branch for classifying inpatient palliative care episodes (including hospice care) has 11 classes and explains 20.98% of the variance in inpatient palliative care phase costs using trimmed data. There are 22 classes in the ambulatory palliative care branch that explains 17.14% variation in ambulatory phase cost using trimmed data. The term 'subacute' is used in Australia to describe health care in which the goal--a change in functional status or improvement in quality of life--is a better predictor of the need for, and the cost of, care than the patient's underlying diagnosis. The results suggest that phase of care (stage of illness) is the best predictor of the cost of Australian palliative care. Other predictors of cost are functional status and age. In the ambulatory setting, symptom severity and the model of palliative care are also predictive of cost. These variables are used in the AN-SNAP Version 1 classification to create 33 palliative care classes. The classification has clinical meaning but the overall statistical performance is only moderate. The structure of the classification allows for it to be improved over time as models of palliative care service delivery develop.

Palliative care in Thailand.

PubMed

Krongyuth, Panit; Campbell, Cathy L; Silpasuwan, Pimpan

2014-12-01

In Thailand, several barriers exist that prevent people with life-limiting illnesses from accessing good-quality palliative care, namely: lack of palliative care providers; lack of training and education for the palliative care workforce; and issues with availability and distribution of opioids. Without palliative care, people suffer needlessly during the last months of their life. This paper gives an analysis of these issues and provides recommendations for clinical practice, research and health policy that may help to alleviate these issues.

"What is Palliative Care?"

PubMed

Kozlov, Elissa; Carpenter, Brian D

2017-04-01

Americans rely on the Internet for health information, and people are likely to turn to online resources to learn about palliative care as well. The purpose of this study was to analyze online palliative care information pages to evaluate the breadth of their content. We also compared how frequently basic facts about palliative care appeared on the Web pages to expert rankings of the importance of those facts to understanding palliative care. Twenty-six pages were identified. Two researchers independently coded each page for content. Palliative care professionals (n = 20) rated the importance of content domains for comparison with content frequency in the Web pages. We identified 22 recurring broad concepts about palliative care. Each information page included, on average, 9.2 of these broad concepts (standard deviation [SD] = 3.36, range = 5-15). Similarly, each broad concept was present in an average of 45% of the Web pages (SD = 30.4%, range = 8%-96%). Significant discrepancies emerged between expert ratings of the importance of the broad concepts and the frequency of their appearance in the Web pages ( r τ = .25, P > .05). This study demonstrates that palliative care information pages available online vary considerably in their content coverage. Furthermore, information that palliative care professionals rate as important for consumers to know is not always included in Web pages. We developed guidelines for information pages for the purpose of educating consumers in a consistent way about palliative care.

The Palliative Care Journey in Kenya and Uganda.

PubMed

Kamonyo, Emmanuel S

2018-02-01

Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial, and spiritual problems. This update is aimed at examining palliative care development/achievements and challenges in Kenya and Uganda and the role of various actors in palliative care establishment in the region. It assesses the policy environment, progress in education, access to essential medicines, palliative care implementation efforts, and legal and human rights work. East African nations have huge disease burdens, both communicable and noncommunicable. HIV and cancer are the major causes of mortality in Kenya and Uganda and put huge demands on the health care system and on the country's economies. All these conditions will require palliative care services as the disease burden increases. Unfortunately, for many African countries, accessing palliative care services, including access to pain relief, remains very limited resulting in serious suffering for patients and their families. The interventions in Kenya and Uganda help palliative care organizations engage with their respective governments to ensure that the social and legal barriers impeding access to palliative care services are removed. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative Care in Iran: Moving Toward the Development of Palliative Care for Cancer.

PubMed

Rassouli, Maryam; Sajjadi, Moosa

2016-04-01

Cancer is the third leading cause of death in Iran and its incidence has been increasing in recent years. Patients' quality of life is altered rather enormously due to cancer, which doubles the importance of and the need for providing palliative care in Iran. Although many steps have been taken toward the development and providing of palliative care in Iran, there is still a large gap between the status quo and the desirable state. This study presents the current state of palliative care for cancer patients and discusses the barriers, challenges and outlook of palliative care in Iran. If infrastructural projects that have recently been launched prove successful, proper advancement toward the providing of palliative care services in Iran will then not far on the horizon. © The Author(s) 2014.

A comprehensive palliative care program at a tertiary cancer center in Jordan.

PubMed

Shamieh, Omar; Hui, David

2015-03-01

The palliative care program in King Hussein Cancer Center (KHCC) is growing rapidly to serve the needs of patients with cancer and their families. To describe the KHCC palliative care program and its integration into the oncology care. Narrative review of our palliative care program. Patients with cancer at KHCC have access to an interprofessional palliative care at different settings. In 2012, the inpatient team saw 400 consultations and 979 referrals and admissions. The outpatient clinic had a total of 1133 patient visits. The home care program provided a total of 1501 visits. Our program is a regional center for education and training and actively conducts research. Our palliative care program may be a model for successful delivery of comprehensive cancer care in the Middle East. © The Author(s) 2013.

Poverty Reduction in India through Palliative Care: A Pilot Project.

PubMed

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

2017-01-01

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

Poverty Reduction in India through Palliative Care: A Pilot Project

PubMed Central

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

2017-01-01

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

Palliative Care Training in Cardiology Fellowship: A National Survey of the Fellows.

PubMed

Dabbouseh, Noura M; Kaushal, Shivtej; Peltier, Wendy; Johnston, Fabian M

2018-02-01

To address perspectives of cardiology fellows on the current state of palliative education and palliative and hospice resource utilization within their fellowship experiences. We conducted an online national survey of cardiology fellows during the 2015 to 2016 academic year. Survey questions aimed to assess perceived importance of palliative care education, level of palliative care education during fellowship, and the structure of palliative care support at respondent institutions. Responses were collected anonymously. A total of 519 programs, including subspecialty programs, were contacted. We received 365 responses, a number that represents roughly 14% of all cardiology fellows nationwide during the 2015 to 2016 academic year. Fellows reported discordance in the quality of education between general cardiology and palliative care principles as it relates to care of the patient approaching the end of life. Fellows infrequently received explicit training nor were observed or mentored in delivering end-of-life discussions. Respondents reported an underutilization of palliative care and hospice resources during fellowship training and also a perception that attending faculty were not routinely addressing goals of care. Our survey results highlight a need for enhanced palliative care and end-of-life training experiences for cardiology fellows and also suggest underutilization of hospice and palliative care resources for patients with advanced cardiac diseases. These findings create a platform for future work that might: (1) confirm this training deficit, (2) lead to exploration of educational models that could reconcile this deficit, and (3) potentially help improve palliative care support for patients and families facing advanced heart disease.

A Summary of Pediatric Palliative Care Team Structure and Services as Reported by Centers Caring for Children with Cancer.

PubMed

Weaver, Meaghann S; Rosenberg, Abby R; Tager, Julia; Wichman, Christopher S; Wiener, Lori

2018-04-01

Little is known about the composition, availability, integration, communication, perceived barriers, and work load of pediatric palliative care (PPC) providers serving children and adolescents with cancer. To summarize the structure and services of programs to better understand successes and gaps in implementing palliative care as a standard of care. Cross-sectional online survey about the palliative care domains determined by the Psychosocial Care of Children with Cancer and Their Families Workgroup. A total of 142 surveys were completed with representation from 18 countries and 39 states. Three-fourths of sites reported having a PPC program available for the pediatric cancer population at their center. Over one-fourth (28%) have been in existence less than five years. Fewer than half of sites (44%) offered 24/7 access to palliative care consultations. Neither hospital-based nor local community hospice services were available for pediatric patients at 24% of responding sites. A specific inpatient PPC unit was available at 8% of sites. Criteria for automatic palliative referrals ("trigger" diagnoses) were reported by 44% respondents. The presence of such "triggers" increased the likelihood of palliative principle introduction 3.41 times (p < 0.003). Six percent of respondents perceived pediatric oncology patients and their families "always" were introduced to palliative care concepts and 17% reported children and families "always" received communication about palliative principles. The most prevalent barriers to palliative care were at the provider level. Children and adolescents with cancer do not yet receive concurrent palliative care as a universal standard.

Increased access to palliative care and hospice services: opportunities to improve value in health care.

PubMed

Meier, Diane E

2011-09-01

A small proportion of patients with serious illness or multiple chronic conditions account for the majority of health care spending. Despite the high cost, evidence demonstrates that these patients receive health care of inadequate quality, characterized by fragmentation, overuse, medical errors, and poor quality of life. This article examines data demonstrating the impact of the U.S. health care system on clinical care outcomes and costs for the sickest and most vulnerable patients. It also defines palliative care and hospice, synthesizes studies of the outcomes of palliative care and hospice services, reviews variables predicting access to palliative care and hospice services, and identifies those policy priorities necessary to strengthen access to high-quality palliative care. Palliative care and hospice services improve patient-centered outcomes such as pain, depression, and other symptoms; patient and family satisfaction; and the receipt of care in the place that the patient chooses. Some data suggest that, compared with the usual care, palliative care prolongs life. By helping patients get the care they need to avoid unnecessary emergency department and hospital stays and shifting the locus of care to the home or community, palliative care and hospice reduce health care spending for America's sickest and most costly patient populations. Policies focused on enhancing the palliative care workforce, investing in the field's science base, and increasing the availability of services in U.S. hospitals and nursing homes are needed to ensure equitable access to optimal care for seriously ill patients and those with multiple chronic conditions. © 2011 Milbank Memorial Fund. Published by Wiley Periodicals Inc.

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

PubMed Central

Meier, Diane E

2011-01-01

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

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

PubMed Central

2013-01-01

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

76 FR 35221 - Proposed Collection; Comment Request; NINR End-of-Life and Palliative Care Science Needs...

Federal Register 2010, 2011, 2012, 2013, 2014

2011-06-16

... Request; NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source Questionnaire... Collection: Title: NINR End-of-Life and Palliative Care Science Needs Assessment: Funding Source... Collection: The NINR End-of-Life Science Palliative Care (EOL PC) Needs Assessment: Funding Source...

Early Intervention With Transplantation Recipients to Improve Access to and Knowledge of Palliative Care.

PubMed

Harden, Karen L

2016-08-01

The literature continues to support that patients undergoing hematopoietic stem cell transplantation (HSCT) receive early consultation with palliative care specialists. Nurses can be leaders in this initiative. This quality improvement project was conducted to determine whether patients undergoing HSCT, who were provided an early consultation with palliative care, would report increased knowledge and increased ability to access palliative services. Patients completed a postintervention questionnaire in which the majority of patients reported that they had increased knowledge about palliative care and learned how to access their services. Patient comments were positive about the successful intervention of early palliative care. The palliative care team, however, revealed a different view of the situation, showing that patients were often overwhelmed, anxious, and sometimes did not remember the content of their meetings.

Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU Project (Improving Palliative Care in the ICU).

PubMed

Nelson, Judith E; Bassett, Rick; Boss, Renee D; Brasel, Karen J; Campbell, Margaret L; Cortez, Therese B; Curtis, J Randall; Lustbader, Dana R; Mulkerin, Colleen; Puntillo, Kathleen A; Ray, Daniel E; Weissman, David E

2010-09-01

To describe models used in successful clinical initiatives to improve the quality of palliative care in critical care settings. We searched the MEDLINE database from inception to April 2010 for all English language articles using the terms "intensive care," "critical care," or "ICU" and "palliative care"; we also hand-searched reference lists and author files. Based on review and synthesis of these data and the experiences of our interdisciplinary expert Advisory Board, we prepared this consensus report. We critically reviewed the existing data with a focus on models that have been used to structure clinical initiatives to enhance palliative care for critically ill patients in intensive care units and their families. There are two main models for intensive care unit-palliative care integration: 1) the "consultative model," which focuses on increasing the involvement and effectiveness of palliative care consultants in the care of intensive care unit patients and their families, particularly those patients identified as at highest risk for poor outcomes; and 2) the "integrative model," which seeks to embed palliative care principles and interventions into daily practice by the intensive care unit team for all patients and families facing critical illness. These models are not mutually exclusive but rather represent the ends of a spectrum of approaches. Choosing an overall approach from among these models should be one of the earliest steps in planning an intensive care unit-palliative care initiative. This process entails a careful and realistic assessment of available resources, attitudes of key stakeholders, structural aspects of intensive care unit care, and patterns of local practice in the intensive care unit and hospital. A well-structured intensive care unit-palliative care initiative can provide important benefits for patients, families, and providers.

How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA.

PubMed

Selman, Lucy Ellen; Daveson, Barbara A; Smith, Melinda; Johnston, Bridget; Ryan, Karen; Morrison, R Sean; Pannell, Caty; McQuillan, Regina; de Wolf-Linder, Suzanne; Pantilat, Steven Z; Klass, Lara; Meier, Diane; Normand, Charles; Higginson, Irene J

2017-03-01

patient empowerment, through which patients become self-determining agents with some control over their health and healthcare, is a common theme across health policies globally. Most care for older people is in the acute setting, but there is little evidence to inform the delivery of empowering hospital care. we aimed to explore challenges to and facilitators of empowerment among older people with advanced disease in hospital, and the impact of palliative care. we conducted an ethnography in six hospitals in England, Ireland and the USA. The ethnography involved: interviews with patients aged ≥65, informal caregivers, specialist palliative care (SPC) staff and other clinicians who cared for older adults with advanced disease, and fieldwork. Data were analysed using directed thematic analysis. analysis of 91 interviews and 340 h of observational data revealed substantial challenges to empowerment: poor communication and information provision, combined with routinised and fragmented inpatient care, restricted patients' self-efficacy, self-management, choice and decision-making. Information and knowledge were often necessary for empowerment, but not sufficient: empowerment depended on patient-centredness being enacted at an organisational and staff level. SPC facilitated empowerment by prioritising patient-centred care, tailored communication and information provision, and the support of other clinicians. empowering older people in the acute setting requires changes throughout the health system. Facilitators of empowerment include excellent staff-patient communication, patient-centred, relational care, an organisational focus on patient experience rather than throughput, and appropriate access to SPC. Findings have relevance for many high- and middle-income countries with a growing population of older patients with advanced disease. © The Author 2016. Published by Oxford University Press on behalf of the British Geriatrics Society. All rights reserved. For Permissions, please email: journals.permissions@oup.com

Branding Palliative Care Units by Avoiding the Terms “Palliative” and “Hospice”

PubMed Central

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

2017-01-01

The term “palliative care” has a negative connotation and may act as a barrier to early patient referrals. Rebranding has thus been proposed as a strategy to reduce the negative perceptions associated with palliative care. For example, using the term “supportive care” instead of “palliative care” in naming palliative care units has been proposed in several studies. In Taiwan, terms other than “palliative” and “hospice” are already widely used in the names of palliative care units. With this in mind, this study investigated the characteristics of palliative care unit names in order to better understand the role of naming in palliative care. Relevant data were collected from the Taiwan Academy of Hospice Palliative Medicine, the National Health Insurance Administration of the Ministry of Health and Welfare, and the open database maintained by the government of Taiwan. We found a clear phenomenon of avoiding use of the terms “palliative” and “hospice” in the naming of palliative care units, a phenomenon that reflects the stigma attached to the terms “palliative” and “hospice” in Taiwan. At the time of the study (September, 2016), there were 55 palliative care units in Taiwan. Only 20.0% (n = 11) of the palliative care unit names included the term “palliative,” while 25.2% (n = 14) included the term “hospice.” Religiously affiliated hospitals were less likely to use the terms “palliative” and “hospice” (χ2 = 11.461, P = .001). There was also a lower prevalence of use of the terms “palliative” and “hospice” for naming palliative care units in private hospitals than in public hospitals (χ2 = 4.61, P = .032). This finding highlights the strong stigma attached to the terms “palliative” and “hospice” in Taiwan. It is hypothesized that sociocultural and religious factors may partially account for this phenomenon. PMID:28140730

Core attitudes of professionals in palliative care: a qualitative study.

PubMed

Simon, Steffen T; Ramsenthaler, Christina; Bausewein, Claudia; Krischke, Norbert; Geiss, Gerlinde

2009-08-01

Self-awareness of one's own reactions towards patients and their relatives is of paramount importance for all professionals in palliative care. 'Core attitude' describes the way in which a person perceives himself and the world, and forms the basis for his actions and thoughts. The aim of this study is to explore what core attitude means for palliative care professionals and whether there is a specific core attitude in palliative care. Qualitative study with 10 face-to-face in-depth interviews with experts in palliative care (nurses, physicians, social workers, psychologists, chaplain) in Germany. Core attitude in palliative care can be best described with the following three domains: 1) personal characteristics; 2) experience of care; and 3) competence in care. Authenticity is the most important characteristic of professionals, along with honesty and mindfulness. Core attitude primarily becomes apparent in the relationship with the patient. Perception and listening are key competences. The experts emphasized the universality of the core attitude in the care of ill people. They stressed the importance and relevance of teaching core attitudes in palliative care education. In the field of palliative care, core attitude consists predominately of authenticity, manifests itself in relationships, and requires a high degree of perceptiveness.

Palliative Care Specialist Consultation Is Associated With Supportive Care Quality in Advanced Cancer.

PubMed

Walling, Anne M; Tisnado, Diana; Ettner, Susan L; Asch, Steven M; Dy, Sydney M; Pantoja, Philip; Lee, Martin; Ahluwalia, Sangeeta C; Schreibeis-Baum, Hannah; Malin, Jennifer L; Lorenz, Karl A

2016-10-01

Although recent randomized controlled trials support early palliative care for patients with advanced cancer, the specific processes of care associated with these findings and whether these improvements can be replicated in the broader health care system are uncertain. The aim of this study was to evaluate the occurrence of palliative care consultation and its association with specific processes of supportive care in a national cohort of Veterans using the Cancer Quality ASSIST (Assessing Symptoms Side Effects and Indicators of Supportive Treatment) measures. We abstracted data from 719 patients' medical records diagnosed with advanced lung, colorectal, or pancreatic cancer in 2008 over a period of three years or until death who received care in the Veterans Affairs Health System to evaluate the association of palliative care specialty consultation with the quality of supportive care overall and by domain using a multivariate regression model. All but 54 of 719 patients died within three years and 293 received at least one palliative care consult. Patients evaluated by a palliative care specialist at diagnosis scored seven percentage points higher overall (P < 0.001) and 11 percentage points higher (P < 0.001) within the information and care planning domain compared with those without a consult. Early palliative care specialist consultation is associated with better quality of supportive care in three advanced cancers, predominantly driven by improvements in information and care planning. This study supports the effectiveness of early palliative care consultation in three common advanced cancers within the Veterans Affairs Health System and provides a greater understanding of what care processes palliative care teams influence. Published by Elsevier Inc.

Integrating palliative care with usual care of diabetic foot wounds.

PubMed

Dunning, Trisha

2016-01-01

Palliative care is a philosophy and a system for deciding care and can be used alone or integrated with usual chronic disease care. Palliative care encompasses end-of-life care. Palliative care aims to enhance quality of life, optimize function and manage symptoms including early in the course of chronic diseases. The purposes of this article are to outline palliative care and discuss how it can be integrated with usual care of diabetic foot wounds. Many people with diabetes who have foot wounds also have other comorbidities and diabetes complications such as cardiovascular and renal disease and depression, which affect medicine and other treatment choices, functional status, surgical risk and quality of life. Two broad of diabetic foot disease exist: those likely to heal but who could still benefit from integrated palliative care such as managing pain and those where healing is unlikely where palliation can be the primary focus. People with diabetes can die suddenly, although the life course is usually long with periods of stable and unstable disease. Many health professionals are reluctant to discuss palliative care or suggest people to document their end-of-life care preferences. If such preferences are not documented, the person might not achieve their desired death or place of death and health professionals and families can be confronted with difficult decisions. Palliative care can be integrated with usual foot care and is associated with improved function, better quality of life and greater patient and family satisfaction. Copyright © 2016 John Wiley & Sons, Ltd.

Identified Palliative Care Approach Needs with SPICT in Family Practice: A Preliminary Observational Study.

PubMed

Hamano, Jun; Oishi, Ai; Kizawa, Yoshiyuki

2018-02-09

Identifying patients who require palliative care approach is challenging for family physicians, even though several identification tools have been developed for this purpose. To explore the prevalence and characteristics of family practice patients who need palliative care approach as determined using Supportive and Palliative Care Indicators Tool (SPICT™, April 2015) in Japan. Single-center cross-sectional study. We enrolled all patients ≥65 years of age who visited the chief researcher's outpatient clinic in October 2016. We used Japanese version of SPICT (SPICT-J) to identify patients who need palliative care approach. We assessed patients' backgrounds and whether they had undergone advance care planning with their family physicians. This study included 87 patients (61 females) with a mean age of 79.0 ± 7.4 years. Eight patients (9.2%) were identified as needing palliative care approach. The mean age of patients who needed this approach was 82.3 ± 8.3 years and main underlying conditions were heart/vascular disease (37.5%), dementia/frailty (25.0%), and respiratory disease (12.5%). Only two of eight patients identified as needing palliative care approach had discussed advance care planning with their family physicians. In family practice, 9.2% of outpatients ≥65 years of age were identified as needing palliative care approach. Family physicians should carefully evaluate whether outpatients need palliative care approach.

A Novel Use of Peer Coaching to Teach Primary Palliative Care Skills: Coaching Consultation.

PubMed

Jacobsen, Juliet; Alexander Cole, Corinne; Daubman, Bethany-Rose; Banerji, Debjani; Greer, Joseph A; O'Brien, Karen; Doyle, Kathleen; Jackson, Vicki A

2017-10-01

We aim to address palliative care workforce shortages by teaching clinicians how to provide primary palliative care through peer coaching. We offered peer coaching to internal medicine residents and hospitalists (attendings, nurse practioners, and physician assistants). An audit of peer coaching encounters and coachee feedback to better understand the applicability of peer coaching in the inpatient setting to teach primary palliative care. Residents and hospitalist attendings participated in peer coaching for a broad range of palliative care-related questions about pain and symptom management (44%), communication (34%), and hospice (22%). Clinicians billed for 68% of encounters using a time-based billing model. Content analysis of coachee feedback identified that the most useful elements of coaching are easy access to expertise, tailored teaching, and being in partnership. Peer coaching can be provided in the inpatient setting to teach primary palliative care and potentially extend the palliative care work force. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Integration of Latino/a cultural values into palliative health care: a culture centered model.

PubMed

Adames, Hector Y; Chavez-Dueñas, Nayeli Y; Fuentes, Milton A; Salas, Silvia P; Perez-Chavez, Jessica G

2014-04-01

Culture helps us grapple with, understand, and navigate the dying process. Although often overlooked, cultural values play a critical and influential role in palliative care. The purpose of the present study was two-fold: one, to review whether Latino/a cultural values have been integrated into the palliative care literature for Latinos/as; two, identify publications that provide recommendations on how palliative care providers can integrate Latino/a cultural values into the end-of-life care. A comprehensive systematic review on the area of Latino/a cultural values in palliative care was conducted via an electronic literature search of publications between 1930-2013. Five articles were identified for reviewing, discussing, or mentioning Latino/a cultural values and palliative care. Only one article specifically addressed Latino/a cultural values in palliative care. The four remaining articles discuss or mention cultural values; however, the cultural values were not the main focus of each article's thesis. The results of the current study highlight the lack of literature specifically addressing the importance of integrating Latino/a cultural values into the delivery of palliative care. As a result, this article introduces the Culture-Centered Palliative Care Model (CCPC). The article defines five key traditional Latino/a cultural values (i.e., familismo, personalismo, respeto, confianza, and dignidad), discusses the influence of each value on palliative health care, and ends with practical recommendations for service providers. Special attention is given to the stages of acculturation and ethnic identity.

Developing a Palliative Care Competency Framework for Health Professionals and Volunteers: The Nova Scotian Experience.

PubMed

McCallum, Meg; Carver, Janet; Dupere, David; Ganong, Sharon; Henderson, J David; McKim, Ann; McNeil-Campbell, Lisa; Richardson, Holly; Simpson, Judy; Tschupruk, Cheryl; Jewers, Heather

2018-05-15

In 2014, Nova Scotia released a provincial palliative care strategy and implementation working groups were established. The Capacity Building and Practice Change Working Group, comprised of health professionals, public advisors, academics, educators, and a volunteer supervisor, was asked to select palliative care education programs for health professionals and volunteers. The first step in achieving this mandate was to establish competencies for health professionals and volunteers caring for patients with life-limiting illness and their families and those specializing in palliative care. In 2015, a literature search for palliative care competencies and an environmental scan of related education programs were conducted. The Irish Palliative Care Competence Framework serves as the foundation of the Nova Scotia Palliative Care Competency Framework. Additional disciplines and competencies were added and any competencies not specific to palliative care were removed. To highlight interprofessional practice, the framework illustrates shared and discipline-specific competencies. Stakeholders were asked to validate the framework and map the competencies to educational programs. Numerous rounds of review refined the framework. The framework includes competencies for 22 disciplines, 9 nursing specialties, and 4 physician specialties. The framework, released in 2017, and the selection and implementation of education programs were a significant undertaking. The framework will support the implementation of the Nova Scotia Integrated Palliative Care Strategy, enhance the interprofessional nature of palliative care, and guide the further implementation of education programs. Other jurisdictions have expressed considerable interest in the framework.

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

PubMed Central

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

2012-01-01

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

Proposal for Development of EBM-CDSS (Evidence-Based Clinical Decision Support System) to Aid Prognostication in Terminally Ill Patients

DTIC Science & Technology

2013-10-01

monthly basis. The similar process is followed at TGH, where the research team mostly works with palliative care service. Through this process, the... Palliative Care at TGH. • We continue to regularly conduct meetings with TGH palliative care team and present the ongoing experience of our research study...to the TGH palliative care team. These meeting established a fruitful and trustful and working relationship with TGH palliative care team, which is

Outcome evaluation of the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education: nationwide physician education project for primary palliative care in Japan.

PubMed

Yamamoto, Ryo; Kizawa, Yoshiyuki; Nakazawa, Yoko; Ohde, Sachiko; Tetsumi, Sato; Miyashita, Mitsunori

2015-01-01

Palliative care is an essential part of medicine, but most physicians have had no formal opportunity to acquire basic skills in palliative care. In Japan, the Palliative care Emphasis program on symptom management and Assessment for Continuous Medical Education (PEACE) was launched to provide formal primary palliative care education for all physicians engaged in cancer care. This study sought to determine whether PEACE could improve physicians' knowledge of, practices in, and difficulties with palliative care. In 2011, we conducted questionnaire-based surveys before, just after, and 2 months after completion of the PEACE program in physicians participating in the program at each of 15 designated cancer hospitals in Japan. Knowledge was measured using the palliative care knowledge questionnaire for PEACE (PEACE-Q). Practices and difficulties were evaluated using the Palliative Care self-reported Practice Scale (PCPS) and the Palliative Care Difficulties Scale (PCDS), respectively. Among 223 physicians participating in the program, 85 (38%) answered the follow-up survey. Significant improvements were noted on the PEACE-Q compared with baseline immediately after completion of the program, and this progress was maintained at 2 months (21.7 ± 5.56 versus 29.5 ± 2.10 versus 28.7 ± 3.28, respectively; p < 0.0001). Similarly, significant improvements were noted for total scores on both the PCPS and the PCDS at 2 months after completion of the program (62.1 ± 13.9 versus 69.6 ± 9.94 [p < 0.0001] for the PCPS; 44.4 ± 9.96 versus 39.4 ± 10.7 [p < 0.0001] for the PCDS). The PEACE education program improved physicians' knowledge of, practices in, and difficulties with palliative care.

Conceptual foundations of a palliative approach: a knowledge synthesis.

PubMed

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

2016-01-15

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

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

PubMed

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

2005-02-01

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

[Palliative rehabilitation of two patients with terminal stage cancer: a visit to patient's home and the provision of advice by a nurse and rehabilitation staff members before discharge--from physical therapist's perspective].

PubMed

Kuhara, Satoshi; Kakou, Hiroaki; Tokuo, Mika; Nogami, Michiko; Takemura, Jin; Hachisuka, Kenji

2009-12-01

We report two patients with terminal stage cancer who spent some days at their home after a physical therapist, occupational therapist, nurse, and medical social worker all visited the patients' homes and advised the patients' family in regard to the appropriate care before the patients were discharged as a strategy for palliative rehabilitation. Case 1: A patient suffering from terminal stage cancer was bed-ridden because of a pathological fracture of the femur. After palliative rehabilitation, the patient was able to get out of the bed and improved her daily living activity level through physical therapy. She spent some days at home according to the results of the pre-discharge home visit guidance to her family. Case 2: A patient suffering from terminal stage cancer manifested symptoms of fatigue and generalized muscular weakness. After palliative rehabilitation, her muscle strength and physical endurance were improved by physical therapy and adjustment of the bed height. Because she was eager to go home, we took her to her home before being discharged, and she was able to spend a few hours at home. Pre-discharge home visit guidance by a nurse and rehabilitation staff members to the patient' s family in regard to appropriate home care may therefore be a good means of satisfying such patients' desire to see their home once more and thereby improve their quality of life.

Supportive palliative care should be integrated into routine care for paediatric patients with life-limiting kidney disease.

PubMed

Thumfart, Julia; Reindl, Tobias; Rheinlaender, Cornelia; Müller, Dominik

2018-03-01

Paediatric palliative care is no longer restricted to patients with cancer and has been extended to patients with other chronic conditions, such as cystic fibrosis or neuromuscular disorders. This review focused on the current state of palliative care for children and adolescents with chronic kidney disease (CKD). We assessed the literature on CKD published up to August 2017. All the papers, except one from 1996, were published this century. This review discusses the role that palliative care plays in the process of decision-making and explores the possibilities of implementing palliative care into the routine therapy of affected patients and providing support for their families. Offering early palliative care as an integral part of the kidney, supportive care provided by the nephrology care team is both necessary and feasible for patients with CKD. As a minimum, a specialised palliative care team should be involved in patients with multiple comorbidities, in conservative treatment scenarios and in acute life-threatening complications. Further studies and guidelines are required to improve the care of patients with CKD and their families. Supportive palliative care should be implemented into the routine care of patients with life-limiting kidney disease. ©2017 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

Palliative care is not yet a well-defined product within the Dutch healthcare insurance system.

PubMed

Jansen, Wim J J; Vissers, Kris C P; Zuurmond, Wouter W A; van Montfort, Guus P W P; Rhebergen, Andre; Loer, Stephan A

2009-07-01

In the Netherlands, the quality and availability of palliative care has improved markedly within the last decade. However, many open questions remain concerning the position of palliative care as an insurable product on the Dutch healthcare market. Therefore, we analysed the policies of all private Dutch healthcare insurance companies as well as the public insurance policy for extraordinary medical costs. We studied how and which parts of palliative care were reimbursed in 2007. We observed a huge variability in costs and reimbursement regulations reflecting a rapid turnover of products for palliative care due to various new developments on this specific field of medical care. We conclude that a better definition of the product 'palliative care' is necessary for patients, health care providers and insurance companies.

Culture and Palliative Care: Preferences, Communication, Meaning, and Mutual Decision Making.

PubMed

Cain, Cindy L; Surbone, Antonella; Elk, Ronit; Kagawa-Singer, Marjorie

2018-05-01

Palliative care is gaining acceptance across the world. However, even when palliative care resources exist, both the delivery and distribution of services too often are neither equitably nor acceptably provided to diverse population groups. The goal of this study was to illustrate tensions in the delivery of palliative care for diverse patient populations to help clinicians to improve care for all. We begin by defining and differentiating culture, race, and ethnicity, so that these terms-often used interchangeably-are not conflated and are more effectively used in caring for diverse populations. We then present examples from an integrative literature review of recent research on culture and palliative care to illustrate both how and why varied responses to pain and suffering occur in different patterns, focusing on four areas of palliative care: the formation of care preferences, communication patterns, different meanings of suffering, and decision-making processes about care. For each area, we provide international and multiethnic examples of variations that emphasize the need for personalization of care and the avoidance of stereotyping beliefs and practices without considering individual circumstances and life histories. We conclude with recommendations for improving palliative care research and practice with cultural perspectives, emphasizing the need to work in partnerships with patients, their family members, and communities to identify and negotiate culturally meaningful care, promote quality of life, and ensure the highest quality palliative care for all, both domestically and internationally. Copyright © 2018 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

What are families most grateful for after receiving palliative care? Content analysis of written documents received: a chance to improve the quality of care.

PubMed

Aparicio, María; Centeno, Carlos; Carrasco, José Miguel; Barbosa, Antonio; Arantzamendi, María

2017-09-06

Family members are involved in the care of palliative patients at home and therefore, should be viewed as important sources of information to help clinicians better understand the quality palliative care service patients receive. The objective of the study was to analyse what is valued most by family carers undergoing bereavement of a palliative care home service in order to identify factors of quality of care. Qualitative exploratory study based on documentary analysis. Content analysis of 77 gratitude documents received over 8 years by a palliative home service in Odivelas, near Lisbon (Portugal) was undertaken, through an inductive approach and using investigator triangulation. Frequency of distinct categories was quantitatively defined. Three different content categories emerged from the analysis: a) Recognition of the care received and the value of particular aspects of care within recognised difficult situations included aspects such as kindness, listening, attention to the family, empathy, closeness, affection and the therapeutic relationships established (63/77 documents); b) Family recognition of the achievements of the palliative care team (29/77) indicated as relief from suffering for the patient and family, opportunity of dying at home, help in facing difficult situations, improvement in quality of life and wellbeing, and feeling of serenity during bereavement; c) Messages of support (45/77) related to the need of resources provided. The relational component emerges as an underlying key aspect of family carers' experience with palliative care home service. Family carers show spontaneous gratitude for the professionalism and humanity found in palliative care. The relational component of care emerges as key to achieve a high quality care experience of palliative care homes service, and could be one indicator of quality of palliative care.

A qualitative evaluation of the impact of a palliative care course on preregistration nursing students' practice in Cameroon.

PubMed

Bassah, Nahyeni; Cox, Karen; Seymour, Jane

2016-03-31

Current evidence suggests that palliative care education can improve preregistration nursing students' competencies in palliative care. However, it is not known whether these competencies are translated into students' practice in the care of patients who are approaching the end of life. This paper seeks to contribute to the palliative care evidence base by examining how nursing students in receipt of education report transfer of learning to practice, and what the barriers and facilitators may be, in a resource-poor country. We utilised focus groups and individual critical incident interviews to explore nursing students' palliative care learning transfer. Three focus groups, consisting of 23 participants and 10 individual critical incident interviews were conducted with preregistration nursing student who had attended a palliative care course in Cameroon and had experience caring for a patient approaching the end of life. Data was analysed thematically, using the framework approach. The results suggest that nursing students in receipt of palliative care education can transfer their learning to practice. Students reported recognizing patients with palliative care needs, providing patients with physical, psychosocial and spiritual support and communicating patient information to the wider care team. They did however perceive some barriers to this transfer which were either related to themselves, qualified nurses, the practice setting or family caregivers and patients. The findings from this study suggest that nursing student in receipt of palliative care education can use their learning in practice to provide care to patients and their families approaching the end of life. Nevertheless, these findings need to be treated with some caution given the self-reported nature of the data. Demonstrating the link between preregistration palliative care education and patient care is vital to ensuring that newly acquired knowledge and skills are translated and embedded into clinical practice. This study also has implications for advocating for palliative care policies and adequately preparing clinical placement sites for students' learning and transfer of learning.

Culturally Relevant Palliative and End-of-Life Care for U.S. Indigenous Populations: An Integrative Review.

PubMed

Isaacson, Mary J; Lynch, Anna R

2018-03-01

American Indians/Alaska Natives (AIs/ANs) have higher rates of chronic illness and lack access to palliative/end-of-life (EOL) care. This integrative review ascertained the state of the science on culturally acceptable palliative/EOL care options for Indigenous persons in the United States. Databases searched: CINAHL, PubMed/MEDLINE, SocINDEX, PsycINFO, PsycARTICLES, ERIC, Health Source: Nursing/Academic Edition, and EBSCO Discovery Service 1880s-Present. Key terms used: palliative care, EOL care, and AI/AN. peer-reviewed articles published in English. Findings/Results: Twenty-nine articles were identified, 17 remained that described culturally specific palliative/EOL care for AIs/ANs. Synthesis revealed four themes: Communication, Cultural Awareness/Sensitivity, Community Guidance for Palliative/EOL Care Programs, Barriers and two subthemes: Trust/Respect and Mistrust. Limitations are lack of research funding, geographic isolation, and stringent government requirements. Palliative/EOL care must draw on a different set of skills that honor care beyond cure provided in a culturally sensitive manner.

How to Manage Hospital-Based Palliative Care Teams Without Full-Time Palliative Care Physicians in Designated Cancer Care Hospitals: A Qualitative Study.

PubMed

Sakashita, Akihiro; Kishino, Megumi; Nakazawa, Yoko; Yotani, Nobuyuki; Yamaguchi, Takashi; Kizawa, Yoshiyuki

2016-07-01

To clarify how highly active hospital palliative care teams can provide efficient and effective care regardless of the lack of full-time palliative care physicians. Semistructured focus group interviews were conducted, and content analysis was performed. A total of 7 physicians and 6 nurses participated. We extracted 209 codes from the transcripts and organized them into 3 themes and 21 categories, which were classified as follows: (1) tips for managing palliative care teams efficiently and effectively (7 categories); (2) ways of acquiring specialist palliative care expertise (9 categories); and (3) ways of treating symptoms that are difficult to alleviate (5 categories). The findings of this study can be used as a nautical chart of hospital-based palliative care team (HPCT) without full-time PC physician. Full-time nurses who have high management and coordination abilities play a central role in resource-limited HPCTs. © The Author(s) 2015.

Palliative Care in Heart Failure: Rationale, Evidence, and Future Priorities.

PubMed

Kavalieratos, Dio; Gelfman, Laura P; Tycon, Laura E; Riegel, Barbara; Bekelman, David B; Ikejiani, Dara Z; Goldstein, Nathan; Kimmel, Stephen E; Bakitas, Marie A; Arnold, Robert M

2017-10-10

Patients with heart failure (HF) and their families experience stress and suffering from a variety of sources over the course of the HF experience. Palliative care is an interdisciplinary service and an overall approach to care that improves quality of life and alleviates suffering for those living with serious illness, regardless of prognosis. In this review, we synthesize the evidence from randomized clinical trials of palliative care interventions in HF. While the evidence base for palliative care in HF is promising, it is still in its infancy and requires additional high-quality, methodologically sound studies to clearly elucidate the role of palliative care for patients and families living with the burdens of HF. Yet, an increase in attention to primary palliative care (e.g., basic physical and emotional symptom management, advance care planning), provided by primary care and cardiology clinicians, may be a vehicle to address unmet palliative needs earlier and throughout the illness course. Published by Elsevier Inc.

Evaluation of Hospital-Based Palliative Care Programs.

PubMed

Hall, Karen Lynn; Rafalson, Lisa; Mariano, Kathleen; Michalek, Arthur

2016-02-01

This study evaluated current hospital-based palliative care programs using recommendations from the Center to Advance Palliative Care (CAPC) as a framework. Seven hospitals located in Buffalo, New York were included based on the existence of a hospital-based palliative care program. Data was collected from August through October of 2013 by means of key informant interviews with nine staff members from these hospitals using a guide comprised of questions based on CAPC's recommendations. A gap analysis was conducted to analyze the current state of each hospital's program based upon CAPC's definition of a quality palliative care program. The findings identify challenges facing both existing/evolving palliative care programs, and establish a foundation for strategies to attain best practices not yet implemented. This study affirms the growing availability of palliative care services among these selected hospitals along with opportunities to improve the scope of services in line with national recommendations. © The Author(s) 2014.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care.

PubMed

Freeman, Rachel; Luyirika, Emmanuel Bk; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation's public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation.

The WHO collaborating centre for public health palliative care programs: an innovative approach of palliative care development.

PubMed

Ela, Sara; Espinosa, Jose; Martínez-Muñoz, Marisa; Lasmarías, Cristina; Beas, Elba; Mateo-Ortega, Dolors; Novellas, Anna; Gómez-Batiste, Xavier

2014-04-01

The designation of the Catalan Institute of Oncology (Barcelona, Spain) as World Health Organization (WHO) Collaborating Centre for Public Health Palliative Care Programmes (WHOCC-ICO) in February 2008 turns the institution into the first ever center of international reference in regards to palliative care implementation from a public health perspective. The center aims to provide support to countries willing to develop palliative care programs, to identify models of success, to support WHO's policies, and to generate and spread evidence on palliative care. This article describes the WHOCC-ICO's contribution in the implementation of public health palliative care programs and services. The center's main features and future actions are emphasized. At the end of the initial four-year designation period, the organization evaluates the task done to reach its objectives. Such global assessment would take forward the quality of the institution, and generate a revision of its terms of reference for the next designation period. Based on new evidence, the center has recently decided to expand its scope by adopting a community-wide chronic care approach which moves beyond cancer and focuses on the early identification of patients with any chronic disease in need of palliative care. Moreover, the center advocates the development of comprehensive models of care that address patients' psychosocial needs. This center's new work plan includes additional significant innovations, such as the startup of the first chair of palliative care in Spain. Such a whole new approach responds to the main challenges of current palliative care.

Multicentered Study Evaluating Pharmacy Students' Perception of Palliative Care and Clinical Reasoning Using Script Concordance Testing.

PubMed

Atayee, Rabia S; Lockman, Kashelle; Brock, Cara; Abazia, Daniel T; Brooks, Tracy L; Pawasauskas, Jayne; Edmonds, Kyle P; Herndon, Christopher M

2018-01-01

As the role of the pharmacist on the transdisciplinary palliative care team grows, the need for adequate instruction on palliative care and clinical reasoning skills in schools of pharmacy grows accordingly. This study evaluates second- and third-year pharmacy students from 6 accredited schools of pharmacy that participated in surveys before and after the delivery of a didactic palliative care elective. The survey collected student demographics, perceptions of the importance of and student skill level in palliative care topics. The script concordance test (SCT) was used to assess clinical decision-making skills on patient cases. Student scores on the SCT were compared to those of a reference panel of experts. A total of 89 students completed the pre-/postsurveys and were included in data analysis. There was no statistically significant difference in student perceived importance of palliative care skills before and after the elective. Students from all 6 institutions showed significant increase in confidence in their palliative care skills at the end of the course. There was also a significant improvement across all institutions in clinical reasoning skills in most of the SCT questions used to assess these skills. Students choosing an elective in palliative care likely do so because they already have an understanding of the importance of these topics in their future practice settings. Delivery of a palliative care elective in the pharmacy curriculum significantly increases both student confidence in their palliative care skills and their clinical reasoning skills in these areas.

Clinical aspects of palliative care in advanced Parkinson’s disease

PubMed Central

2012-01-01

Parkinson's disease (PD) is one of the most common neurodegenerative disorders of the elderly population. Few therapeutic options are available for patients with PD requiring palliative care. Treatment of the early stages of PD is entirely different from later stages. During the later stages, the palliative care model is introduced to provide the patient with comfort and support. Early palliative care in PD requires minimization of dyskinesias and decreasing occurrence of motor and non-motor off times in an effort to maximize independent motor function. In the later stages, the focus of treatment shifts to treating the predominant non-motor symptoms and having a more supportive and palliative nature. The purpose of this review is to provide a summary of the palliative care management issues and palliative care management options of end-stage PD patients. PMID:23098090

Neonatal palliative care: developing consensus among neonatologists using the Delphi technique in Portugal.

PubMed

Mendes, Joana C C; Justo da Silva, Lincoln

2013-12-01

Pediatric palliative care in Portugal is improving, but there is still additional work to do concerning programs or guidelines for this subject. In Portugal, physicians are the stakeholders in the decision-making process with reference to the transition to palliative care in the neonatal intensive care unit, and it was considered very important to raise their awareness and motivation about neonatal palliative care. Our research was based on Catlin and Carter's protocol from 2002 and the main goal was to assess neonatologists' willingness to build a palliative care and end-of-life protocol that could be acceptable nationwide. The survey used the Delphi technique and was developed in 3 rounds. The expert panel was composed of 57 participants who represented 41% of the Portuguese neonatologists. The study was conducted via the Internet, based in a researcher-created private Web site, and e-mail was used for data collection and feedback. Neonatologists agreed on 7 areas: (1) planning (medical education, resources, and local), (2) prenatal palliative care, (3) neonatal palliative care criteria, (4) the parents (presenting neonatal palliative care to parents, including then in the daily care of newborns and in family-centered care), (5) physicians' needs, (6) pain and symptom management, and (7) end-of-life care (withholding/withdrawing ventilation and hydration/nutrition).

Integrating palliative care into comprehensive cancer care.

PubMed

Abrahm, Janet L

2012-10-01

While there are operational, financial, and workforce barriers to integrating oncology with palliative care, part of the problem lies in ourselves, not in our systems. First, there is oncologists' "learned helplessness" from years of practice without effective medications to manage symptoms or training in how to handle the tough communication challenges every oncologist faces. Unless they and the fellows they train have had the opportunity to work with a palliative care team, they are unlikely to be fully aware of what palliative care has to offer to their patients at the time of diagnosis, during active therapy, or after developing advanced disease, or may believe that, "I already do that." The second barrier to better integration is the compassion fatigue many oncologists develop from caring for so many years for patients who, despite the oncologists' best efforts, suffer and die. The cumulative grief oncologists experience may go unnamed and unacknowledged, contributing to this compassion fatigue and burnout, both of which inhibit the integration of oncology and palliative care. Solutions include training fellows and practicing oncologists in palliative care skills (eg, in symptom management, psychological disorders, communication), preventing and treating compassion fatigue, and enhancing collaboration with palliative care specialists in caring for patients with refractory distress at any stage of disease. As more oncologists develop these skills, process their grief, and recognize the breadth of additional expertise offered by their palliative care colleagues, palliative care will become integrated into comprehensive cancer care.

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

PubMed

Svensson, Gunilla; Wåhlin, Ingrid

2018-01-02

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

Palliative care - managing pain

MedlinePlus

... this page: //medlineplus.gov/ency/patientinstructions/000532.htm Palliative care - managing pain To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

Using social exchange theory to understand non-terminal palliative care referral practices for Parkinson's disease patients.

PubMed

Prizer, Lindsay P; Gay, Jennifer L; Perkins, Molly M; Wilson, Mark G; Emerson, Kerstin G; Glass, Anne P; Miyasaki, Janis M

2017-10-01

A palliative approach is recommended in the care of Parkinson's disease patients; however, many patients only receive this care in the form of hospice at the end of life. Physician attitudes about palliative care have been shown to influence referrals for patients with chronic disease, and negative physician perceptions may affect early palliative referrals for Parkinson's disease patients. To use Social Exchange Theory to examine the association between neurologist-perceived costs and benefits of palliative care referral for Parkinson's disease patients and their reported referral practices. A cross-sectional survey study of neurologists. A total of 62 neurologists recruited from the National Parkinson Foundation, the Medical Association of Georgia, and the American Academy of Neurology's clinician database. Participants reported significantly stronger endorsement of the rewards ( M = 3.34, SD = 0.37) of palliative care referrals than the costs ( M = 2.13, SD = 0.30; t(61) = -16.10, p < 0.0001). A Poisson regression found that perceived costs, perceived rewards, physician type, and the number of complementary clinicians in practice were significant predictors of palliative care referral. Physicians may be more likely to refer patients to non-terminal palliative care if (1) they work in interdisciplinary settings and/or (2) previous personal or patient experience with palliative care was positive. They may be less likely to refer if (1) they fear a loss of autonomy in patient care, (2) they are unaware of available programs, and/or (3) they believe they address palliative needs. Initiatives to educate neurologists on the benefits and availability of non-terminal palliative services could improve patient access to this care.

Effects of Palliative Care Training Program on Knowledge, Attitudes, Beliefs and Experiences Among Student Physiotherapists: A Preliminary Quasi-experimental Study.

PubMed

Kumar, Senthil P; Jim, Anand; Sisodia, Vaishali

2011-01-01

Physiotherapists play an inherent role in the multidisciplinary palliative care team. Existing knowledge, attitudes, beliefs and experiences influence their team participation in palliative care. The objective of this study was to assess the changes in knowledge, attitudes, beliefs and experiences among student physiotherapists who attended a palliative care training program. Preliminary quasi-experimental study design, conducted at an academic institution. Fifty-two student physiotherapists of either gender (12 male, 40 female) of age (20.51±1.78 years) who attended a palliative care training program which comprised lectures and case examples of six-hours duration participated in this study. The study was performed after getting institutional approval and obtaining participants' written informed consent. The lecture content comprised WHO definition of palliative care, spiritual aspects of life, death and healing, principles, levels and models of palliative care, and role of physiotherapists in a palliative care team. The physical therapy in palliative care-knowledge, attitudes, beliefs and experiences scale (PTiPC-KABE Scale)- modified from palliative care attitudes scale were used for assessing the participants before and after the program. Paired t-test and Wilcoxon signed rank test at 95% confidence interval using SPSS 11.5 for Windows. Statistically significant differences (P<0.05) were noted for all four subscales- knowledge (7.84±4.61 points), attitudes (9.46±8.06 points), beliefs (4.88±3.29 points) and experiences (15.8±11.28 points) out of a total score of 104 points. The focus-group training program produced a significant positive change about palliative care in knowledge, attitudes, beliefs and experiences among student physiotherapists.

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

PubMed

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

2017-11-25

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

Multiple myeloma in Niger Delta, Nigeria: complications and the outcome of palliative interventions

PubMed Central

Nwabuko, Ogbonna Collins; Igbigbi, Elizabeth Eneikido; Chukwuonye, Innocent Ijezie; Nnoli, Martin Anazodo

2017-01-01

Background Multiple myeloma (MM) is one of the hematological malignancies that require palliative care. This is because of the life-threatening nature and the suffering associated with the illness. The aim of this study is to bring to the fore the complications experienced by people living with MM in the Niger-Delta region of Nigeria and the outcome of various palliative interventions. Methods This was a 10-year multi-center retrospective study of 26 patients diagnosed and managed in three major centers in the Niger-Delta region of Nigeria from January 2003 to December 2012. Information on the clinical, laboratory, radiological data, and palliative treatment was obtained at presentation and subsequently at intervals of 3 months until the patient was lost to follow-up. Result The mean duration from onset of symptoms to diagnosis was 13.12 months (95% CI, 6.65–19.58). A total of 16 (61.5%), eight (30.8%), and two subjects (7.7%) presented in Durie–Salmon (DS) stages III, II, and I, respectively. The complications presented by patients at diagnoses included bone pain (84.6%), anemia (61.5%), nephropathy (23.1%), and hemiplegia (35%). All the patients received analgesics, while 50.0% received blood transfusion, 56.7% had surgery performed, 19% had hemodialysis, and 3.8% received radiotherapy. A total of 10 (38%) patients benefited from bisphosphonates (BPs). A total of 57.6% of patients were on melphalan–prednisone (MP) double regimen, while 19% and 8% patients were on MP–thalidomide and MP–bortezomib triple regimens, respectively. A total of 3.8% of patients at DS stage IIIB disease had autologous stem-cell transplantation (ASCT). Only 7.6% of the myeloma patients survived up to 5 years post diagnosis. The overall mean survival interval was 39.7 months (95% CI, 32.1–47.2). Conclusion Late diagnosis and inadequate palliative care account for major complications encountered by MM patients in the Niger-Delta region of Nigeria. This could be responsible for the poor prognostic outcome and low survival interval of MM individuals in this region. There is, therefore, a need to improve the quality of palliative care received by myeloma patients in this region. This is achievable via provision of relevant and affordable health care facilities for diagnosis and treatment of the disease. PMID:28579833

Outpatient Palliative Cardiology Service Embedded Within a Heart Failure Clinic: Experiences With an Emerging Model of Care.

PubMed

Gandesbery, Benjamin; Dobbie, Krista; Gorodeski, Eiran Z

2018-04-01

The role of palliative care consultation in the outpatient treatment of patients with symptomatic heart failure (HF) is poorly studied. In August 2015, we created an outpatient palliative care service embedded within the HF clinic at Cleveland Clinic main campus. To characterize patients cared for by our novel outpatient palliative cardiology service, including their degree of HF, symptoms, comorbidities, topics addressed in clinic, palliative treatments prescribed, advanced directives status, and mortality. We conducted a retrospective chart review of all patients evaluated by this outpatient service. Eighty patients were seen in 229 outpatient encounters. The most commonly reported symptoms were tiredness (74%), pain (64%), dyspnea (57%), drowsiness (45%), anxiety (45%), and depression (43%). The most frequently addressed issues were pain management (55%) and advanced care planning (54%). The most common palliative medications prescribed in palliative care clinic were opiates (48%), laxatives (22%), antineuropathics (22%), and antidepressants (16%). The 1-year survival rate was 70% (CI 65-75%). Embedding palliative medicine services in an HF outpatient clinic is feasible. Patients seen in this setting had an array of quality-of-life limiting symptoms and were medically managed with several interventions familiar to palliative medicine specialists. Outpatients with chronic HF have a significant symptom burden and may benefit from outpatient specialist palliative care.

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation

PubMed Central

Allsop, Matthew J; Kite, Suzanne; McDermott, Sarah; Penn, Naomi; Millares-Martin, Pablo; Bennett, Michael I

2016-01-01

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient’s preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems. PMID:27507636

Association between the Availability of Hospital-Based Palliative Care and Treatment Intensity for Critically Ill Patients.

PubMed

Hua, May; Ma, Xiaoyue; Morrison, R Sean; Li, Guohua; Wunsch, Hannah

2018-05-29

In the intensive care unit (ICU), studies involving specialized palliative care services have shown decreases in the use of non-beneficial life-sustaining therapies and ICU length of stay for patients. However, whether widespread availability of hospital-based palliative care is associated with less frequent use of high intensity care is unknown. To determine whether availability of hospital-based palliative care is associated with decreased markers of treatment intensity for ICU patients. Retrospective cohort study of adult ICU patients in New York State hospitals, 2008-2014. Multilevel regression was used to assess the relationship between availability of hospital-based palliative care during the year of admission and hospital length of stay, use of mechanical ventilation, dialysis and artificial nutrition, placement of a tracheostomy or gastrostomy tube, days in ICU and discharge to hospice. Of 1,025,503 ICU patients in 151 hospitals, 814,794 (79.5%) received care in a hospital with a palliative care program. Hospital length of stay was similar for patients in hospitals with and without palliative care programs (6 days, interquartile range (IQR) 3-12 vs. 6 days, IQR 3-11, adjusted rate ratio 1.04 [1.03 to 1.05], p < 0.001), as were other healthcare utilization outcomes. However, patients in hospitals with palliative care programs were 46% more likely to be discharged to hospice than those in hospitals without palliative care programs (1.7% vs. 1.4%, adjusted odds ratio 1.46 [1.30 to 1.64], p<0.001). Availability of hospital-based palliative care was not associated with differences in in-hospital treatment intensity but was associated with significantly increased hospice utilization for ICU patients. At this time, the measurable benefit of palliative care programs for critically ill patients may be the increased use of hospice facilities, as opposed to decreased healthcare utilization during an ICU-associated hospitalization.

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation.

PubMed

Allsop, Matthew J; Kite, Suzanne; McDermott, Sarah; Penn, Naomi; Millares-Martin, Pablo; Bennett, Michael I

2017-05-01

The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths ( n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient's preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.

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

PubMed Central

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

2017-01-01

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

Impact of specialist palliative care on coping with Parkinson's disease: patients and carers.

PubMed

Badger, Nathan J; Frizelle, Dorothy; Adams, Debi; Johnson, Miriam J

2018-06-01

UK guidelines recommend palliative care access for people with Parkinson's disease; however, this remains sporadic, and it is unknown whether specialist palliative care helps patients and carers cope with this distressing condition. This study aimed to explore whether, and how, access to specialist palliative care services affected patients' and carers' coping with Parkinson's disease. Semistructured interviews were conducted, audio-recorded and verbatim transcribed. Data were analysed using interpretative phenomenological analysis. Participants were patients with advanced idiopathic Parkinson's disease (n=3), and carers of people with Parkinson's disease (n=5, however, one diagnosis was reviewed) receiving care from an integrated specialist palliative care and Parkinson's disease service in North East England. Access to specialist palliative care helped participants cope with some aspects of advanced Parkinson's disease. Three superordinate themes were developed:' managing uncertainty', 'impacts on the self' and 'specialist palliative care maintaining a positive outlook'. Specialist palliative care helped patients and carers cope with advanced Parkinson's disease. Specialist palliative care is a complex intervention that acknowledges the complex and holistic nature of Parkinson's disease, enabling health in some domains despite continued presence of pathology. These exploratory findings support the utility of this approach for people living with Parkinson's disease. © Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. No commercial use is permitted unless otherwise expressly granted.

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

PubMed

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

2017-10-01

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

Raising the bar for the care of seriously ill patients: results of a national survey to define essential palliative care competencies for medical students and residents.

PubMed

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

2014-07-01

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

Palliative care - shortness of breath

MedlinePlus

... this page: //medlineplus.gov/ency/patientinstructions/000471.htm Palliative care - shortness of breath To use the sharing features on this page, please enable JavaScript. Palliative care is a holistic approach to care that focuses ...

Top 10 things palliative care clinicians wished everyone knew about palliative care.

PubMed

Strand, Jacob J; Kamdar, Mihir M; Carey, Elise C

2013-08-01

With a focus on improving quality of life for patients, palliative care is a rapidly growing medical subspecialty focusing on the care of patients with serious illness. Basic symptom management, discussions of prognostic understanding, and eliciting treatment goals are essential pieces in the practice of nearly all physicians. Nonetheless, many complex patients with a serious, life-threatening illness benefit from consultation with palliative care specialists, who are trained and experienced in complex symptom management and challenging communication interactions, including medical decision making and aligning goals of care. This article discusses the changing role of modern palliative care, addresses common misconceptions, and presents an argument for early integration of palliative care in the treatment of patients dealing with serious illness. Copyright © 2013 Mayo Foundation for Medical Education and Research. Published by Elsevier Inc. All rights reserved.

Patient Outcomes After Palliative Care Consultation Among Patients Undergoing Therapeutic Hypothermia.

PubMed

Pinto, Priya; Brown, Tartania; Khilkin, Michael; Chuang, Elizabeth

2018-04-01

To compare the clinical outcomes of patients who did and did not receive palliative care consultation among those who experienced out-of-hospital cardiac arrest and underwent therapeutic hypothermia. We identified patients at a single academic medical center who had undergone therapeutic hypothermia after out-of-hospital cardiac arrest between 2009 and 2013. We performed a retrospective chart review for demographic data, hospital and critical care length of stay, and clinical outcomes of care. We reviewed the charts of 62 patients, of which 35 (56%) received a palliative care consultation and 27 (44%) did not. Palliative care consultation occurred an average of 8.3 days after admission. Patients receiving palliative care consultation were more likely to have a do-not-resuscitate (DNR) order placed (odds ratio: 2.3, P < .001). The mean length of stay in the hospital was similar for patients seen by palliative care or not (16.7 vs 17.1 days, P = .90). Intensive care length of stay was also similar (11.3 vs 12.6 days, P = .55). Palliative care consultation was underutilized and utilized late in this cohort. Palliative consultation was associated with DNR orders but did not affect measures of utilization such as hospital and intensive care length of stay.

What Is Needed to Prepare Speech Pathologists to Work in Adult Palliative Care?

ERIC Educational Resources Information Center

Pascoe, Ashleigh; Breen, Lauren J.; Cocks, Naomi

2018-01-01

Background: Speech pathologists have a pivotal role in palliative care, assisting patients with swallowing and communication disorders, yet very little is known about the preparedness of speech pathologists to work in this field. Aims: To investigate the preparedness of speech pathologists for working in palliative care. The term 'palliative care'…

Hypnosis in palliative care: from clinical insights to the science of self-regulation.

PubMed

Landry, Mathieu; Stendel, Moriah; Landry, Michel; Raz, Amir

2018-01-01

Palliative care spans a wide-ranging spectrum: from pain-management to spiritual support. As the demand for end-of-life care increases, so does the demand for innovative, effective, interventions. Mind-body techniques seem especially advantageous in a palliative context. Here we show that hypnosis serves an excellent adjunct therapy in palliative care to boost the efficacy of standard treatments. With the overarching goal of bridging clinical and scientific insights, we outline how five core principles of hypnosis can benefit the diverse needs of palliative care.

Community Palliative Care Nurses' Challenges and Coping Strategies on Delivering Home-Based Pediatric Palliative Care.

PubMed

Chong, LeeAi; Abdullah, Adina

2017-03-01

The aim of this study was to explore the experience of community palliative care nurses providing home care to children. A qualitative study was conducted at the 3 community palliative care provider organizations in greater Kuala Lumpur from August to October 2014. Data were collected with semistructured interviews with 16 nurses who have provided care to children and was analyzed using thematic analysis. Two categories were identified: (1) challenges nurses faced and (2) coping strategies. The themes identified from the categories are (1) communication challenges, (2) inadequate training and knowledge, (3) personal suffering, (4) challenges of the system, (5) intrapersonal coping skills, (6) interpersonal coping strategies, and (7) systemic supports. These results reinforces the need for integration of pediatric palliative care teaching and communication skills training into all undergraduate health care programs. Provider organizational support to meet the specific needs of the nurses in the community can help retain them in their role. It will also be important to develop standards for current and new palliative care services to ensure delivery of quality pediatric palliative care.

Center to Advance Palliative Care palliative care clinical care and customer satisfaction metrics consensus recommendations.

PubMed

Weissman, David E; Morrison, R Sean; Meier, Diane E

2010-02-01

Data collection and analysis are vital for strategic planning, quality improvement, and demonstration of palliative care program impact to hospital administrators, private funders and policymakers. Since 2000, the Center to Advance Palliative Care (CAPC) has provided technical assistance to hospitals, health systems and hospices working to start, sustain, and grow nonhospice palliative care programs. CAPC convened a consensus panel in 2008 to develop recommendations for specific clinical and customer metrics that programs should track. The panel agreed on four key domains of clinical metrics and two domains of customer metrics. Clinical metrics include: daily assessment of physical/psychological/spiritual symptoms by a symptom assessment tool; establishment of patient-centered goals of care; support to patient/family caregivers; and management of transitions across care sites. For customer metrics, consensus was reached on two domains that should be tracked to assess satisfaction: patient/family satisfaction, and referring clinician satisfaction. In an effort to ensure access to reliably high-quality palliative care data throughout the nation, hospital palliative care programs are encouraged to collect and report outcomes for each of the metric domains described here.

Integration of Palliative Care in the Context of Rapid Response

PubMed Central

Nelson, Judith E.; Mathews, Kusum S.; Weissman, David E.; Brasel, Karen J.; Campbell, Margaret; Curtis, J. Randall; Frontera, Jennifer A.; Gabriel, Michelle; Hays, Ross M.; Mosenthal, Anne C.; Mulkerin, Colleen; Puntillo, Kathleen A.; Ray, Daniel E.; Weiss, Stefanie P.; Bassett, Rick; Boss, Renee D.; Lustbader, Dana R.

2015-01-01

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved. PMID:25644909

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

PubMed

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

2018-05-01

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

Differential effects of early palliative care based on the age and sex of patients with advanced cancer from a randomized controlled trial.

PubMed

Nipp, Ryan D; El-Jawahri, Areej; Traeger, Lara; Jacobs, Jamie M; Gallagher, Emily R; Park, Elyse R; Jackson, Vicki A; Pirl, William F; Temel, Jennifer S; Greer, Joseph A

2018-04-01

Early palliative care interventions enhance patient outcomes, including quality of life, mood, and coping, but it remains unclear whether certain subgroups of patients are more likely to benefit from early palliative care. We explored whether age and sex moderate the improved outcomes seen with early palliative care. We performed a secondary analysis of data from a randomized trial of 350 patients with advanced lung and non-colorectal gastrointestinal cancer. Patients received an early palliative care intervention integrated with oncology care or usual oncology care alone. We used linear regression to determine if age (older or younger than 65) and sex moderated the effects of the intervention on quality of life (Functional Assessment of Cancer Therapy-General (FACT-G)), depression symptoms (Patient Health Questionnaire 9 (PHQ-9)), and coping (Brief COPE) within lung and gastrointestinal subgroups. At 24 weeks, younger patients with lung cancer receiving early palliative care reported increased use of active coping ( B = 1.74; p = 0.02) and decreased use of avoidant coping ( B = -0.97; p = 0.02), but the effects of early palliative care on these outcomes were not significant for older patients. Male patients with lung cancer assigned to early palliative care reported better quality of life (FACT-G: B = 9.31; p = 0.01) and lower depression scores (PHQ-9: B = -2.82; p = 0.02), but the effects of early palliative care on these outcomes were not significant for female patients. At 24 weeks, we found no age or sex moderation effects within the gastrointestinal cancer subgroup. Age and sex moderate the effects of early palliative care for patients with advanced lung cancer. Early palliative care may need to be tailored to individuals' unique sociodemographic and clinical characteristics.

Changes in Relatives' Perspectives on Quality of Death, Quality of Care, Pain Relief, and Caregiving Burden Before and After a Region-Based Palliative Care Intervention.

PubMed

Maeda, Isseki; Miyashita, Mitsunori; Yamagishi, Akemi; Kinoshita, Hiroya; Shirahige, Yutaka; Izumi, Noriko; Yamaguchi, Takuhiro; Igarashi, Miyuki; Kato, Masashi; Morita, Tatsuya

2016-11-01

A region-based palliative care intervention (Outreach Palliative Care Trial of Integrated Regional Model Study) increased home death, access to specialist palliative care, quality of care, and quality of death and dying. The objective of this study was to examine changes in palliative care outcomes in different care settings (hospitals, palliative care units, and home) and obtain insights into how to improve region-level palliative care. The intervention program was implemented from April 2008 to March 2011. Two bereavement surveys were conducted before and after intervention involving 4228 family caregivers of deceased cancer patients. Family-perceived quality of care (range 1-6), quality of death and dying (1-7), pain relief (1-7), and caregiver burden (1-7) were measured. Response rates were 69% (preintervention) and 66% (postintervention), respectively. Family-perceived quality of care (adjusted mean 4.89, 95% CI 4.54-5.23) and quality of death and dying (4.96, 4.72-5.20) at home were the highest and sustained throughout the study. Palliative care units were at the intermediate level between home and hospitals. In hospitals, both quality of care and quality of death and dying were low at baseline but significantly improved after intervention (quality of care: 4.24, 4.13-4.34 to 4.43, 4.31-4.54, P = 0.002; quality of death and dying: 4.22, 4.09-4.36 to 4.36, 4.22-4.50, P = 0.012). Caregiver burden did not significantly increase after intervention, regardless of place of death. The dual strategies of transition of place of death to home and improving quality of care in hospitals should be recognized as important targets for improving region-level palliative care. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Development of a questionnaire to measure the key attributes of the community palliative care specialist nurse role.

PubMed

Cameron, Dee; Johnston, Bridget

2015-02-01

Recent worldwide economic events have forced an examination of the nurse's contribution to high-quality, effective, person-centred care. Since the role of specialist nurses is considered one of the least understood or valued developments in nursing, specialist nurses must demonstrate their contribution to quality, person-centred health care. To develop a questionnaire which aims to measure the quality of care provided by palliative care specialist nurses from the patients' perspective and to undertake initial validation. The process of questionnaire development involved six phases including systematic literature reviews, patient advisory groups and expert panel reviews, each of which contributed to the questionnaire face and content validity. Johnston's Expert Palliative Care Nurse Model (2002; 2005) provided an evidence-based framework for the development of the questionnaire, and enabled the identification of the key attributes of the palliative care specialist nurse role, thereby providing the themes on which to base the questionnaire. The Quality Measure for Palliative Nursing, a questionnaire, was developed. The themes identified in the questionnaire--personal characteristics, communication skills, knowledge, relationship with patient and providing comfort--aim to facilitate measurement of the quality of care provided by palliative care specialist nurses. Designed for use by palliative patients the Quality Measure for Palliative Nursing is a one-page questionnaire comprising of 15 questions. The Quality Measure for Palliative Nursing is unique since it aims to measure the quality of care provided by community palliative care specialist nurses, and could also be used to measure patient satisfaction with the quality of care provided. Further testing is recommended to ensure that this questionnaire can provide reliable and valid results.

Unmet Needs of African Americans and Whites at the Time of Palliative Care Consultation.

PubMed

Kamal, Arif H; Bull, Janet; Wolf, Steven P; Portman, Diane; Strand, Jacob; Johnson, Kimberly S

2017-06-01

Differences among patient populations that present to consultative palliative care are not known. Such an appreciation would inform health-care delivery tailored to unique populations. We aimed to compare characteristics and palliative care needs of African Americans (AAs) and whites during initial palliative care consultation. We analyzed patient-reported, clinician-entered clinical encounter data from a large, multisite community-based, nonhospice palliative care collaborative. We included first specialty palliative care consultations from January 1, 2014, to July 2, 2015, across 15 sites within the Global Palliative Care Quality Alliance registry. Demographics, disease, performance status, advance care planning, and symptom prevalence/severity were compared. Of 775 patients, 12.9% (N = 100) were AA. African Americans were younger (63 vs 75.4 years, P < .0001). A larger proportion of AAs had a diagnosis of cancer (45.0% vs 36.3%, P = .09) and in the hospital (71% vs 61.8%, P = .07). African Americans were more likely to have a Palliative Performance Score of 0 to 30 (35.6% vs 23.7%, P = .049). Around 50% in both racial groups were full code; slightly more than 40% had an advance directive. Nearly two-thirds in both racial groups reported 3 or more symptoms of any severity; one-third reported 3 or more moderate or severe symptoms. A larger proportion of Africans than whites reported pain of any severity (66.0% vs 56.1%, P = .06). All patients present to palliative care consultations with significant symptom and advance care planning needs. Further research is needed to identify how to deliver palliative care: earlier, in noncancer conditions, and improve pain management in AA populations.

A National Palliative Care Strategy for Canada

PubMed Central

2017-01-01

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

Flemish palliative-care nurses' attitudes to palliative sedation: a quantitative study.

PubMed

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

2012-09-01

Palliative sedation is an option of last resort to control refractory suffering. In order to better understand palliative-care nurses' attitudes to palliative sedation, an anonymous questionnaire was sent to all nurses (589) employed in palliative care in Flanders (Belgium). In all, 70.5% of the nurses (n = 415) responded. A large majority did not agree that euthanasia is preferable to palliative sedation, were against non-voluntary euthanasia in the case of a deeply and continuously sedated patient and considered it generally better not to administer artificial floods or fluids to such a patient. Two clusters were found: 58.5% belonged to the cluster of advocates of deep and continuous sedation and 41.5% belonged to the cluster of nurses restricting the application of deep and continuous sedation. These differences notwithstanding, overall the attitudes of the nurses are in accordance with the practice and policy of palliative sedation in Flemish palliative-care units.

Interventions geared towards strengthening the health system of Namibia through the integration of palliative care

PubMed Central

Freeman, Rachel; Luyirika, Emmanuel BK; Namisango, Eve; Kiyange, Fatia

2016-01-01

The high burden of non-communicable diseases and communicable diseases in Africa characterised by late presentation and diagnosis makes the need for palliative care a priority from the point of diagnosis to death and through bereavement. Palliative care is an intervention that requires a multidisciplinary team to address the multifaceted needs of the patient and family. Thus, its development takes a broad approach that involves engaging all key stakeholders ranging from policy makers, care providers, educators, the public, patients, and families. The main focus of stakeholder engagement should address some core interventions geared towards improving knowledge and awareness, strengthening skills and attitudes about palliative care. These interventions include educating health and allied healthcare professionals on the palliative care-related problems of patients and best practices for care, explaining palliative care as a clinical and holistic discipline and demonstrating its effectiveness, the need to include palliative care into national policies, strategic plans, training curriculums of healthcare professionals and the engagement of patients, families, and communities. Interventions from a five-year programme that was aimed at strengthening the health system of Namibia through the integration of palliative care for people living with HIV and AIDS and cancer in Namibia are shared. This article illustrates how a country can implement the World Health Organisation’s public health strategy for developing palliative care services, which recommends four pillars: government policy, education, drug availability, and implementation. PMID:27563348

Volunteers in Palliative Care - A Comparison of Seven European Countries: A Descriptive Study.

PubMed

Woitha, Kathrin; Hasselaar, Jeroen; van Beek, Karen; Radbruch, Lukas; Jaspers, Birgit; Engels, Yvonne; Vissers, Kris

2015-07-01

In Europe, volunteers have an important role in the delivery of palliative care. As part of the EU co-funded Europall project, 4 aspects of volunteering in palliative care were studied for 7 European countries (Belgium, England, France, Germany, the Netherlands, Poland, and Spain). These included (1) involvement of volunteers in palliative care, (2) organization of palliative care volunteering, (3) legal regulations concerning volunteering, and (4) education and training of palliative care volunteering. A literature search combined with an interview study. Information from the scientific literature, and country-specific policy documents were obtained and completed, along with data of consecutive semi-structured interviews with experts in the field of palliative care in the participating countries. In all countries, volunteers appeared to be involved in palliative care, yet their involvement across health care settings differed per country. England, for example, has the highest number of volunteers whereas Spain has the lowest number. Volunteering is embedded in law and regulations in all participating countries except for England and the Netherlands. In all participating countries, training programs are available and volunteers are organized, both on a national and a regional level. This study provides a descriptive overview of volunteer work in palliative care in 7 European countries, with a focus on the organizational aspects. Further research should concentrate on the roles and responsibilities of volunteers in the care for the terminally ill in different European health systems. © 2014 World Institute of Pain.

Kenya Hospices and Palliative Care Association: integrating palliative care in public hospitals in Kenya.

PubMed

Ali, Zipporah

2016-01-01

In Kenya, cancers as a disease group rank third as a cause of death after infectious and cardiovascular diseases. It is estimated that the annual incidence of cancer is about 37,000 new cases with an annual mortality of 28,000 cases (Kenya National Cancer Control Strategy 2010). The incidence of non-communicable diseases accounts for more than 50% of total hospital admissions and over 55% of hospital deaths (Kenya National Strategy for the Prevention and Control of Non Communicable Diseases 2015-2020). The prevalence of HIV is 6.8 (KIAS 2014). Most of these patients will benefit from palliative care services, hence the need to integrate palliative care services in the public healthcare system. The process of integrating palliative care in public hospitals involved advocacy both at the national level and at the institutional level, training of healthcare professionals, and setting up services within the hospitals that we worked with. Technical support was provided to each individual institution as needed. Eleven provincial hospitals across the country have now integrated palliative care services (Palliative Care Units) and are now centres of excellence. Over 220 healthcare providers have been trained, and approximately, over 30,000 patients have benefited from these services. Oral morphine is now available in the hospital palliative care units. As a success of the pilot project, Kenya Hospices and Palliative Care Association (KEHPCA) is now working with the Ministry of Health Kenya to integrate palliative care services in 30 other county hospitals across the country, thus ensuring more availability and access to more patients. Other developing countries can learn from Kenya's successful experience.

Organization position statements and the stance of "studied neutrality" on euthanasia in palliative care.

PubMed

Johnstone, Megan-Jane

2012-12-01

In recent years, palliative care and related organizations have increasingly adopted a stance of "studied neutrality" on the question of whether euthanasia should be legalized as a bona fide medical regimen in palliative care contexts. This stance, however, has attracted criticism from both opponents and proponents of euthanasia. Pro-euthanasia activists see the stance as an official position of indecision that is fundamentally disrespectful of a patient's right to "choose death" when life has become unbearable. Some palliative care constituents, in turn, are opposed to the stance, contending that it reflects an attitude of "going soft" on euthanasia and as weakening the political resistance that has hitherto been successful in preventing euthanasia from becoming more widely legalized. In this article, attention is given to examining critically the notion and possible unintended consequences of adopting a stance of studied neutrality on euthanasia in palliative care. It is argued that although palliative care and related organizations have an obvious stake in the outcome of the euthanasia debate, it is neither unreasonable nor inconsistent for such organizations to be unwilling to take a definitive stance on the issue. It is further contended that, given the long-standing tenets of palliative care, palliative care organizations have both a right and a responsibility to defend the integrity of the principles and practice of palliative care and to resist demands for euthanasia to be positioned either as an integral part or logical extension of palliative care. Copyright © 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

ICU Bedside Nurses' Involvement in Palliative Care Communication: A Multicenter Survey.

PubMed

Anderson, Wendy G; Puntillo, Kathleen; Boyle, Deborah; Barbour, Susan; Turner, Kathleen; Cimino, Jenica; Moore, Eric; Noort, Janice; MacMillan, John; Pearson, Diana; Grywalski, Michelle; Liao, Solomon; Ferrell, Bruce; Meyer, Jeannette; O'Neil-Page, Edith; Cain, Julia; Herman, Heather; Mitchell, William; Pantilat, Steven

2016-03-01

Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. To describe the perspectives of ICU bedside nurses on their involvement in palliative care communication. A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Palliative care for adolescents and young adults with cancer

PubMed Central

Rosenberg, Abby R; Wolfe, Joanne

2017-01-01

Adolescents and young adults (AYAs) with cancer represent a unique and challenging group of patients with distinct developmental and psychosocial needs that may be unrecognized or unmet during their cancer experience. Palliative care refers to the total care of a patient, regardless of his or her disease status, and aims to improve quality of life by controlling symptoms and alleviating physical, social, psychological, and spiritual suffering. Integrating palliative care into standard oncology practice for AYAs is therefore valuable, if not imperative, in improving their overall cancer experience. In this review, we aimed to describe the scope, benefits, and challenges of palliative care for AYA oncology patients. We provide a broad impression of the existing literature describing or investigating palliative care in this population. Put together, the evidence suggests that palliative care is not only needed, but can also be critically beneficial to patients, families, and health care professionals alike. As we increase public and professional awareness of the needs and applications of palliative care for AYA patients with cancer, we will ultimately enable better psychosocial outcomes of the AYA patients and their larger communities. PMID:21523753

Nurse-family interaction in Malaysian palliative care settings: a focused literature review.

PubMed

Namasivayam, Pathma; O Connor, Margaret; Barnett, Tony; Lee, Susan; Peters, Louise

2011-10-01

Palliative care in Malaysia developed in the 1990s to improve the quality of life of people with advanced cancer. Like many other countries, Malaysia faces its own challenges in providing palliative care to patients and their families. In Malaysian culture, families play a significant part in providing care to the dying. Connecting with families in patient care is therefore important. This paper reports a focused literature review evaluating studies on the care of the families of terminally ill people in palliative care environments in Malaysia. The search engines CINAHL, Medline, PsycINFO, and Google Scholar were searched for literature published from January 2000 to April 2010 relating to family care in palliative care environments. Due to a paucity of research on family care in Malaysia, the search was broadened to include relevant studies on family care internationally. Four themes were identified: delivering palliative care in Malaysia, communicating with families, crossing cultural boundaries, and the caring experience of nurses. The studies indicate the importance of the nurse-family interaction in providing optimal and culturally appropriate palliative care. This paper emphasizes the need for research into the nurse's role in family care and for developing a theory appropriate to the Malaysian culture and other countries with cultural diversity.

Consultation with specialist palliative care services in palliative sedation: considerations of Dutch physicians.

PubMed

Koper, Ian; van der Heide, Agnes; Janssens, Rien; Swart, Siebe; Perez, Roberto; Rietjens, Judith

2014-01-01

Palliative sedation is considered a normal medical practice by the Royal Dutch Medical Association. Therefore, consultation of an expert is not considered mandatory. The European Association of Palliative Care (EAPC) framework for palliative sedation, however, is more stringent: it considers the use of palliative sedation without consulting an expert as injudicious and insists on input from a multi-professional palliative care team. This study investigates the considerations of Dutch physicians concerning consultation about palliative sedation with specialist palliative care services. Fifty-four physicians were interviewed on their most recent case of palliative sedation. Reasons to consult were a lack of expertise and the view that consultation was generally supportive. Reasons not to consult were sufficient expertise, the view that palliative sedation is a normal medical procedure, time pressure, fear of disagreement with the service and regarding consultation as having little added value. Arguments in favour of mandatory consultation were that many physicians lack expertise and that palliative sedation is an exceptional intervention. Arguments against mandatory consultation were practical obstacles that may preclude fulfilling such an obligation (i.e. lack of time), palliative sedation being a standard medical procedure, corroding a physician's responsibility and deterring physicians from applying palliative sedation. Consultation about palliative sedation with specialist palliative care services is regarded as supportive and helpful when physicians lack expertise. However, Dutch physicians have both practical and theoretical objections against mandatory consultation. Based on the findings in this study, there seems to be little support among Dutch physicians for the EAPC recommendations on obligatory consultation.

Integrating palliative care into disease management guidelines.

PubMed

Emanuel, Linda; Alexander, Carla; Arnold, Robert M; Bernstein, Richard; Dart, Richard; Dellasantina, Christopher; Dykstra, Lee; Tulsky, James

2004-12-01

Palliative care should not be reserved for those who are close to dying; as a comprehensive approach to minimizing illness-related suffering, it is appropriate for patients with significant illness from the time of diagnosis on. The American Hospice Foundation Guidelines Committee's initiative aims to provide a practical approach for guideline writers and others to integrate palliative care into disease management and care services whenever it is relevant. A consensus approach was used to design recommendations for upgrading existing disease management and service guidelines to include palliative care. A template is described for identifying stages in disease management guidelines when integration of palliative care is appropriate: (1) Introductory sections to disease management guidelines should include prognosis and other disease consequences; (2) Diagnostic sections should include recommendations for conducting a whole patient assessment; (3) Treatment sections should include discernment of patient goals for care, continuous goal reassessment, palliative care interventions to reduce suffering as needed, and treatment decisions should include discussion of the type of expected improvement. Service guidelines should note the role of interdisciplinary team care as well as palliative care consultative or care services; (4) Sections that conclude the care provided to incurable patients should not end without recommendations on grief and bereavement care, and care during the last hours of living. The American Hospice Foundation Guidelines Committee recommends integration of relevant aspects of palliative care in introductory, diagnostic, treatment, and closing sections of management guidelines for all significant illnesses.

Patients' perceptions of palliative care: adaptation of the Quality from the Patient's Perspective instrument for use in palliative care, and description of patients' perceptions of care received.

PubMed

Sandsdalen, Tuva; Rystedt, Ingrid; Grøndahl, Vigdis Abrahamsen; Hov, Reidun; Høye, Sevald; Wilde-Larsson, Bodil

2015-11-02

Instruments specific to palliative care tend to measure care quality from relative perspectives or have insufficient theoretical foundation. The instrument Quality from the Patient's Perspective (QPP) is based on a model for care quality derived from patients' perceptions of care, although it has not been psychometrically evaluated for use in palliative care. The aim of this study was to adapt the QPP for use in palliative care contexts, and to describe patients' perceptions of the care quality in terms of the subjective importance of the care aspects and the perceptions of the care received. A cross-sectional study was conducted between November 2013 and December 2014 which included 191 patients (73% response rate) in late palliative phase at hospice inpatient units, hospice day-care units, wards in nursing homes that specialized in palliative care and homecare districts, all in Norway. An explorative factor analysis using principal component analysis, including data from 184 patients, was performed for psychometric evaluation. Internal consistency was assessed by Cronbach's alpha and paired t-tests were used to describe patients' perceptions of their care. The QPP instrument was adapted for palliative care in four steps: (1) selecting items from the QPP, (2) modifying items and (3) constructing new items to the palliative care setting, and (4) a pilot evaluation. QPP instrument specific to palliative care (QPP-PC) consists of 51 items and 12 factors with an eigenvalue ≥1.0, and showed a stable factor solution that explained 68.25% of the total variance. The reliability coefficients were acceptable for most factors (0.79-0.96). Patients scored most aspects of care related to both subjective importance and actual care received as high. Areas for improvement were symptom relief, participation, continuity, and planning and cooperation. The QPP-PC is based on a theoretical model of quality of care, and has its roots in patients' perspectives. The instrument was developed and psychometrically evaluated in a sample of Norwegian patients with various diagnoses receiving palliative care in different care contexts. The evaluation of the QPP-PC shows promising results, although it needs to be further validated and tested in other contexts and countries.

Interview: Cancer pain management: the last decade and looking forward.

PubMed

Kaasa, Stein

2013-11-01

Stein Kaasa, MD, speaks to Dominic Chamberlain, Assistant Commissioning Editor: Stein Kaasa specializes in oncology and palliative medicine. In 1993 he was appointed as the first professor in palliative medicine in Scandinavia and he was one of the founders of the palliative care unit in Trondheim (Norway). He also was the founder of the European Palliative Care Research Centre. He has been president of the European Association for Palliative Care, coordinator for one EU-funded project and is Work Package Leader of several EU-funded research collaboratives and international partnerships on research and policy development. Kaasa has been an important advocate for evidence-based practice and has worked extensively to get palliative care research on the agenda, both nationally and internationally. Through his role as Cancer Director in Norway he coordinated and led the development of guidelines for different cancer diseases. Important areas of work were the development of regional cancer treatment guidelines and integration of patient disease trajectories into the existing guidelines. Currently he is Vice Managing Director at St Olavs Hospital, Trondheim University Hospital (Norway), Professor of palliative medicine at the Faculty of Medicine, Norwegian University of Science and Technology and leads the European Palliative Care Research Centre and chairs the European Association for Palliative Care Research Network. Professor Kaasa has published more than 450 articles and book chapters. He has authored the Nordic Textbook of Palliative Care and is coauthor and editor of the Oxford Textbook of Palliative Medicine. Professor Kaasa advises many international journals - either as an advisory board member or as a reviewer (Journal of Pain and Symptom Management, Palliative Medicine, Journal of Palliative Medicine, Oncology, Journal of Clinical Oncology, Pain and The Lancet Oncology).

Palliative and end-of-life care for adults with advanced chronic obstructive pulmonary disease: a rapid review focusing on patient and family caregiver perspectives.

PubMed

Mathews, Gillian; Johnston, Bridget

2017-12-01

The aim of the review was to explore patient and family caregiver perspectives on key issues for ensuring quality of end-of-life care for people with chronic obstructive pulmonary disease (COPD). The growing evidence on the value of specialist palliative care services demonstrates significant improvements in treatments and provisions; however, much of the literature is generic in nature or centred on people with a cancer diagnosis. In this review, we examine the literature to ascertain the views and needs of patients and carers affected by advanced COPD, a highly debilitating condition that can have a profoundly negative impact on the quality of end-of-life experience. A total of 19 papers were included in the review. The main themes in the literature were Holistic Care, Illness Trajectory and Technology. Areas of unmet need emphasized across physical, psychosocial and spiritual domains were identified, particularly in relation to appropriate and timely conversations. Positive developments in the care and treatment of advanced COPD include the use of the STIOLTO Respimat inhaler, a brief educative and psychosocial intervention based on cognitive-behavioural therapy, and high-intensity exercise training. There is some evidence regarding the use of technology in end-stage COPD.

Characteristics and Outcomes of In-Hospital Palliative Care Consultation among Patients with Renal Disease Versus Other Serious Illnesses.

PubMed

Grubbs, Vanessa; O'Riordan, David; Pantilat, Steve

2017-07-07

Despite significant morbidity and mortality associated with ESRD, these patients receive palliative care services much less often than patients with other serious illnesses, perhaps because they are perceived as having less need for such services. We compared characteristics and outcomes of hospitalized patients in the United States who had a palliative care consultation for renal disease versus other serious illnesses. In this observational study, we used data collected by the Palliative Care Quality Network, a national palliative care quality improvement collaborative. The 23-item Palliative Care Quality Network core dataset includes demographics, processes of care, and clinical outcomes of all hospitalized patients who received a palliative care consultation between December of 2012 and March of 2016. The cohort included 33,183 patients, of whom 1057 (3.2%) had renal disease as the primary reason for palliative care consultation. Mean age was 71.9 (SD=16.8) or 72.8 (SD=15.2) years old for those with renal disease or other illnesses, respectively. At the time of consultation, patients with renal disease or other illnesses had similarly low mean Palliative Performance Scale scores (36.0% versus 34.9%, respectively; P =0.08) and reported similar moderate to severe anxiety (14.9% versus 15.3%, respectively; P =0.90) and nausea (5.9% versus 5.9%, respectively; P >0.99). Symptoms improved similarly after consultation regardless of diagnosis ( P ≥0.50), except anxiety, which improved more often among those with renal disease (92.0% versus 66.0%, respectively; P =0.002). Although change in code status was similar among patients with renal disease versus other illnesses, from over 60% full code initially to 30% full code after palliative care consultation, fewer patients with renal disease were referred to hospice than those with other illnesses (30.7% versus 37.6%, respectively; P <0.001). Hospitalized patients with renal disease referred for palliative care consultation had similar palliative care needs, improved symptom management, and clarification of goals of care as those with other serious illnesses. Copyright © 2017 by the American Society of Nephrology.

Ethics of palliative care in late-stage cancer management and end-of-life issues in a depressed economy.

PubMed

Chukwuneke, F N

2015-12-01

The Hippocratic Oath has often been referred to as the ethical foundation of medical practice with the key restriction "cause no harm" which is also the principle of benevolence in bioethics. In medical profession, the Oath still exemplifies the key virtues of a doctor in its emphasis on the obligations toward the well-being of the individual patient. In management of end-stage cancer in a depressed economy such as Nigeria, we frequently encounter a wide range of ethical issues that arise in the provision of palliative care mostly due to the prevailing economic situation and cultural setting. Since most of these patients came from a lower economic class of the society, with little or no formal education and lived at a subsistence level, they often find it difficult to provide the medications needed. In a poor setting where health inequity is rife, and ignorance and poverty are commonplace, a good understanding of medical ethics with a good model of health care system will contribute to the health professional's decision-making that will be in the best interest of the patients. Physicians must protect the lives of their patients and should never hasten their death. In end-stage cancer management, we have to relieve suffering and pains, promote palliative care, and give psychological support but never abandoning the patient or initiate terminating their life. This presentation is a clinical analysis of the ethical issues regarding the management of end-stage cancer patients in a poor economy with a critical overview of end-of-life issues in African perspective.

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

PubMed Central

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

2013-01-01

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

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

PubMed Central

Ranganathan, Anjana; Dougherty, Meredith; Waite, David

2013-01-01

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

Palliative care and active disease management are synergistic in modern surgical oncology.

PubMed

Sadler, Erin M; Hawley, Philippa H; Easson, Alexandra M

2018-04-01

Palliative care has long been described in medical literature but only recently is being discussed in the surgical domain. Mounting evidence suggests that early integration of palliative care improves patient outcomes and this is especially true of oncology patients. Thus, the pendulum is swinging toward recognizing that palliative care and active disease management are not mutually exclusive but rather synergistic in modern surgical oncology. Here we use a patient vignette to demonstrate the new challenges and possibilities in modern surgical oncology, we then discuss the historic perspective of palliative care and describe how the paradigm is shifting. Finally, we introduce a model that may be beneficial in conceptualizing this new way of thinking about and integrating palliative care into surgical oncology. Copyright © 2017 Elsevier Inc. All rights reserved.

Can e-learning help you to connect compassionately? Commentary on a palliative care e-learning resource for India.

PubMed

Datta, Soumitra Shankar; Agrawal, Sanjit

2017-01-01

e-learning resources need to be customised to the audience and learners to make them culturally relevant. The ' Palliative care e-learning resource for health care professionals in India' has been developed by the Karunashraya Hospice, Bengaluru in collaboration with the Cardiff Palliative Care Education Team, Wales to address the training needs of professionals in India. The resource, comprising over 20 modules, integrates psychological, social and medical care for patients requiring palliative care for cancer and other diseases. With increased internet usage, it would help in training a large number of professionals and volunteers in India who want to work in the field of palliative care.

Exploring the leadership role of the clinical nurse specialist on an inpatient palliative care consulting team.

PubMed

Stilos, Kalli; Daines, Pat

2013-03-01

Demand for palliative care services in Canada will increase owing to an aging population and the evolving role of palliative care in non-malignant illness. Increasing healthcare demands continue to shape the clinical nurse specialist (CNS) role, especially in the area of palliative care. Clinical nurse specialists bring specialized knowledge, skills and leadership to the clinical setting to enhance patient and family care. This paper highlights the clinical leadership role of the CNS as triage leader for a hospital-based palliative care consulting team. Changes to the team's referral and triage processes are emphasized as key improvements to team efficiency and timely access to care for patients and families.

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

PubMed Central

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

2014-01-01

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

Factors associated with emergency services use in Taiwanese advanced cancer patients receiving palliative home care services during out-of-hours periods: a retrospective medical record study.

PubMed

Kao, Yee-Hsin; Liu, Yao-Ting; Koo, Malcolm; Chiang, Jui-Kun

2018-03-12

For patients receiving palliative home care, the need to visit the emergency department is considered to be an indicator of poor quality care. The situation can be particularly distressing when it occurs outside of normal hours of palliative home care service. The aim of this study was to investigate the factors for emergency department use during out-of-hours periods of palliative home care service among advanced cancer patients in Taiwan. This case-control study was based on a retrospective medical chart review (January 2010 to December 2012) of advanced cancer patients who were receiving palliative home care in a community hospital in south Taiwan. The use of emergency medical services by these patients was dichotomized into either normal hours (8 a.m. to midnight, Monday to Friday, excluding public holidays) of palliative home care or outside normal hours. Logistic regression analyses were performed to evaluate factors associated with emergency services use during out-of-hours period of palliative home care. Of the 94 patients receiving palliative home care, 65 had used emergency services at least once during the 3-year study period. Of these 65 patients, 40% used emergency services during out-of-hours of palliative home care. Patients with distressing conditions (defined as the occurrence of any two conditions of dyspnea, change of consciousness, or gastrointestinal bleeding) were significantly more likely to use emergency services during out-of-hours of palliative home care. Patients at risk of developing dyspnea, change of consciousness, or gastrointestinal bleeding should be provided with relevant information regarding these symptoms and signs.

Spirituality in end-of-life care: attending the person on their journey.

PubMed

Hayden, Deborah

2011-11-01

Spirituality is a fundamental element to the human experience of health and healing, illness and dying. Spiritual care is an essential component of palliative and end-of-life care provision and is the responsibility of all staff and carers involved in the care of patients and families. As end-of-life care is a significant element of community nursing, this article explores the relevancy of spirituality to end-of-life practice, the challenge of defining spirituality and the attributes and skills required for the practice of spiritual care. The aim of is to encourage self reflection and open dialogue about the subject, thus enhancing community nurses' understanding of spiritual care practice. By reflecting and generating talk about the practice of spiritual care, it may become more normalized, recognized, and practically meaningful, thereby retaining its significance in holistic nursing.

Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.

PubMed

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

2017-10-01

Despite evidence for early integration of palliative care for people with advanced cancer and their families, patterns of late engagement continue. Prior research has focused on health professionals' attitudes to palliative care with few studies exploring the views of patients and their carers. To explore initial perceptions of palliative care when this is first raised with patients with advanced cancer and their families in Australian settings. Cross-sectional, prospective, exploratory qualitative design, involving narrative-style interviews and underpinned by an interpretative phenomenological framework. Purposively sampled, English-speaking, adult patients with advanced cancer ( n = 30) and their nominated family caregivers ( n = 25) recruited from cancer services at a tertiary metropolitan hospital in Melbourne, Victoria, Australia. Three major themes evolved which represent the common initial perceptions of palliative care held by patients with advanced cancer and their carers when this concept is first raised: (1) diminished care, (2) diminished possibility and (3) diminished choice. Palliative care was negatively associated with a system of diminished care which is seen as a 'lesser' treatment alternative, diminished possibilities for hope and achievement of ambitions previously centred upon cure and diminished choices for the circumstances of one's care given all other options have expired. While there is an increasing move towards early integration of palliative care, this study suggests that patient and caregiver understandings have not equally progressed. A targeted public health campaign is warranted to disentangle understandings of palliative care as the 'institutional death' and to reframe community rhetoric surrounding palliative care from that of disempowered dying to messages of choice, accomplishment and possibility.

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

PubMed

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

2016-06-01

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

Rural Palliative Care in North India: Rapid Evaluation of a Program Using a Realist Mixed Method Approach.

PubMed

Munday, Daniel F; Haraldsdottir, Erna; Manak, Manju; Thyle, Ann; Ratcliff, Cathy M

2018-01-01

Palliative care has not developed widely in rural North India. Since 2010, the Emmanuel Hospitals Association (EHA) has been developing a model of palliative care appropriate for this setting, based on teams undertaking home visits with the backup of outpatient and inpatient services. A project to further develop the model operated from 2012 to 2015 supported by funding from the UK. This study aims to evaluate the EHA palliative care project. Rapid evaluation method using a mixed method realist approach at the five project hospital sites. An overview of the project was obtained by analyzing project documents and key informant interviews. Questionnaire data from each hospital were collected, followed by interviews with staff, patients, and relatives and observations of home visits and other activities at each site. Descriptive analysis of quantitative and thematic analysis of qualitative data was undertaken. Each site was measured against the Indian Minimum Standards Tool for Palliative Care (IMSTPC). Each team followed the EHA model, with local modifications. Services were nurse led with medical support. Eighty percent of patients had cancer. Staff demonstrated good palliative care skills and patients and families appreciated the care. Most essential IMSTPC markers were achieved but morphine licenses were available to only two teams. Remarkable synergy was emerging between palliative care and community health. Hospitals planned to fund palliative care through income from surgical services. Excellent palliative care appropriate for rural north India is delivered through the EHA model. It could be extended to other similar sites.

Availability of Dutch General Practitioners for After-Hours Palliative Care.

PubMed

Plat, Fredrik M; Peters, Yvonne A S; Giesen, Paul; Smits, Marleen

2018-01-01

Continuity of care is important for palliative patients in their end of life. In the Netherlands, after-hours primary care for palliative patients is either provided by large-scale general practitioner (GP) cooperatives or GPs choose to give palliative care by themselves while they are not on duty. To examine the availability of, perceived problems by, and attitude of Dutch GPs regarding providing palliative care for their own patients outside office hours. Cross-sectional observational study among 1772 GPs from 10 Dutch regions. Online questionnaire among GPs affiliated with 10 GP cooperatives. Five hundred twenty-four (29.6%) eligible questionnaires were returned. Of the GPs, 60.8% were personally available outside office hours for their own palliative patients on their own private cell phone and performed home visits if needed. In 33.0%, GPs were willing to make home visits in private time instigated by the GP cooperative and 26.8% were only accessible for telephone consultation by the GP cooperative. In 12.2%, the GP delegated after-hours palliative care completely to the GP cooperative. The GPs predominantly reported "time pressure" problems (17.3%) as a barrier and 61.7% stated that after-hours palliative care is the responsibility of the own GP. The large majority of Dutch GPs is personally available for telephone consultation and/or willing to provide palliative care for their own patients outside office hours. For the future, it is important to maintain the willingness of GPs to remain personally available for their palliative patients.

Changes in the quantity and level of evidence of palliative and hospice care literature: the last century.

PubMed

Tieman, Jennifer; Sladek, Ruth; Currow, David

2008-12-10

To objectively quantify the literature and the clinical trial basis for palliative and hospice practice given a perception that its evidence base is not well developed. Using Ovid Medline, the study looked at cumulative and absolute numbers of articles in the general medical literature and the palliative and hospice care literature. The same comparisons were made exploring clinical trials from 1902 to 2005. Data were collated in five year groups from 1970 onward using a highly specific search phrase. The proportion of all Ovid Medline publications relating to palliative and hospice care rose from 0.08% in 1970 to 0.38% of the literature in 2005. In the same time, clinical trials increased from 0.96% to 7.22% of the palliative care literature published. By 2005, one in every 122 clinical trials published in the literature as a whole was in palliative or hospice care. The rate of growth in palliative care clinical trials as a proportion of all palliative and hospice publications was on average 1.4 times greater than in the corresponding general literature. More than one half of these studies were reported in just 43 journals, most of which were not specialist palliative and hospice care journals. Given the diversity of journals in which clinical studies related to hospice and palliative care appear, there is a key challenge for clinicians in finding ways that will allow currency of practice in a broad and rapidly changing field.

Is Palliative Care Right for You?

MedlinePlus

... For Family Caregivers Glossary Menu Is Palliative Care Right for You? Answer the following questions to determine whether palliative care might be right for you or someone close to you. Remember, ...

A retrospective population based cohort study of access to specialist palliative care in the last year of life: who is still missing out a decade on?

PubMed

Rosenwax, Lorna; Spilsbury, Katrina; McNamara, Beverley A; Semmens, James B

2016-05-10

Historically, specialist palliative care has been accessed by a greater proportion of people dying with cancer compared to people with other life-limiting conditions. More recently, a variety of measures to improve access to palliative care for people dying from non-cancer conditions have been implemented. There are few rigorous population-based studies that document changes in palliative care service delivery relative to the number of patients who could benefit from such services. A retrospective cohort study of the last year of life of persons with an underlying cause of death in 2009-10 from cancer, heart failure, renal failure, liver failure, chronic obstructive pulmonary disease, Alzheimer's disease, motor neurone disease, Parkinson's disease, Huntington's disease and/or HIV/AIDS. The proportion of decedents receiving specialist palliative care was compared to a 2000-02 cohort. Logistic regression models were used identify social and demographic factors associated with accessing specialist palliative care. There were 12,817 deaths included into the cohort; 7166 (56 %) from cancer, 527 (4 %) from both cancer and non-cancer conditions and 5124 (40 %) from non-cancer conditions. Overall, 46.3 % of decedents received community and/or hospital based specialist palliative care; a 3.5 % (95 % CI 2.3-4.7) increase on specialist palliative care access reported ten years earlier. The majority (69 %; n = 4928) of decedents with cancer accessed palliative care during the last year of life. Only 14 % (n = 729) of decedents with non-cancer conditions accessed specialist palliative care, however, this represented a 6.1 % (95 % CI 4.9-7.3) increase on the specialist palliative care access reported for the same decedent group ten years earlier. Compared to decedents with heart failure, increased odds of palliative care access was observed for decedents with cancer (OR 10.5; 95 % CI 9.1-12.2), renal failure (OR 1.5; 95 % CI 1.3-1.9), liver failure (OR 2.3; 95 % CI 1.7-3.3) or motor neurone disease (OR 4.5; 95 % CI 3.1-6.6). Living in major cities, being female, having a partner and living in a private residence was associated with increased odds of access to specialist palliative care. There is small but significant increase in access to specialist palliative care services in Western Australia, specifically in patients dying with non-cancer conditions.

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

PubMed

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

2016-04-01

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

Timing of palliative care needs reporting and aggressiveness of care near the end of life in metastatic lung cancer: A national registry-based study.

PubMed

Goldwasser, François; Vinant, Pascale; Aubry, Régis; Rochigneux, Philippe; Beaussant, Yvan; Huillard, Olivier; Morin, Lucas

2018-05-09

Early integration of palliative care for patients with metastatic lung cancer improves their quality of life and survival and reduces the aggressiveness of care near the end of life. This study examined the association between the timing of palliative care needs reporting and the aggressiveness of end-of-life care. This retrospective cohort study used the French National Hospital Registry to identify all hospitalized adults (≥20 years old) who died of metastatic lung cancer in France between 2010 and 2013. It compared the use of care and treatments near the end of life as a function of the timing of the first reporting of palliative care needs. The use of chemotherapy and the use of invasive ventilation were defined as primary outcomes. Propensity score weighting was used to control for potential confounders. Among a total of 64,950 deceased patients with metastatic lung cancer, the reporting of palliative care needs was characterized as timely (from 91 to 31 days before death) for 26.3%, late (from 30 to 8 days before death) for 31.5%, and very late (from 7 to 0 days before death) for 12.8%. Palliative care needs were not reported for 19,106 patients (29.4%). Patients with timely reporting of palliative care needs had the earliest and most progressive decrease in the use of anticancer therapy. The use of invasive ventilation also increased with a delay in palliative care needs reporting. There is a clear association between the timing of palliative care needs reporting and the aggressiveness of care near the end of life. Cancer 2018. © 2018 American Cancer Society. © 2018 American Cancer Society.

Leadership Development Initiative: Growing Global Leaders… Advancing Palliative Care.

PubMed

Ferris, Frank D; Moore, Shannon Y; Callaway, Mary V; Foley, Kathleen M

2018-02-01

The International Palliative Care Leadership Development Initiative (LDI) was a model demonstration project that aimed to expand the global network of palliative care leaders in low- and moderate-resource countries who are well positioned to apply their new leadership skills. Thirty-nine palliative medicine physicians from 25 countries successfully completed the two-year curriculum that included three thematic residential courses, mentorship, and site visits by senior global palliative care leaders and personal projects to apply their new leadership skills. The focus on self-reflection, leadership behaviors and practices, strategic planning, high-level communication, and teaching skills led to significant personal and professional transformation among the participants, mentors, and the LDI team. The resulting residential course curriculum and the personal leadership stories and biosketches of the leaders are now available open access at IPCRC.net. Already, within their first-year postgraduation, the leaders are using their new leadership skills to grow palliative care capacity through significant changes in policy, improved opioid/other medication availability, new and enhanced educational curricula and continuing education activities, and development/expansion of palliative care programs in their organizations and regions. We are not aware of another palliative care initiative that achieves the global reach and ripple effect that LDI has produced. Copyright © 2017 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions: a qualitative systematic review protocol.

PubMed

Ekberg, Stuart; Bradford, Natalie; Herbert, Anthony; Danby, Susan; Yates, Patsy

2015-11-01

The objective of this review is to identify and synthesize the best international qualitative evidence on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions. For the purposes of this review, "healthcare users" will be taken to include children who have life-limiting conditions and their families. The question to be addressed is:What are healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions? The prospect of the death of a child from an incurable medical condition is harrowing, yet finding a way to discuss this prospect is crucial to maximize the quality of life for such children and their families. High-quality communication is well recognized as a core skill health care professionals need to maximize the quality of care they provide. This skill is valued by service users, who consistently rate it as one of the highest priorities for the care they receive. Evidence suggests, however, that healthcare professionals can feel ill-equipped or uncomfortable communicating with and about such children. Therefore, it is important to understand what represents high-quality communication and what is involved in accomplishing this within pediatric palliative care.In recent decades there has been an increased focus on providing palliative care for children who have life-limiting conditions. These are conditions for which no cure is available and for which the probable outcome is premature death. Palliative care may also be appropriate for children who have life-threatening conditions; these are conditions where there is not only a high probability of premature death but also a chance of long-term survival into adulthood Although pediatric palliative care is underpinned by the same philosophy as adult palliative care, children who have life-limiting conditions and their families have particular needs that distinguish them from users of adult palliative care. For example, at a physical level children are more likely than adults to have non-malignant conditions that follow trajectories in which children oscillate between feeling relatively well and acutely unwell. The social dynamic of their care is also radically different, particularly given the role of parents or guardians in making surrogate decisions about their child's care. Such factors warrant considering pediatric palliative care as distinct from palliative care more generally.Although the particular circumstances of children who have life-limiting conditions have led to development of pediatric palliative care, the particular provisions of this care differs among countries. One aspect of variation is the age range of patients. Pediatric palliative care is usually provided to neonates, infants, children, adolescents and young adults, but international variations in the definitions of these age ranges, particularly for adolescents and young adults, means pediatric palliative care is provided to different age groups in different countries. This review therefore adopts a pragmatic rather than an age-based definition of a pediatric palliative care, considering all studies relating to service users who are being cared for by pediatric rather than adult healthcare services.In catering for the unique needs of children who have life-limiting conditions and their families, pediatric palliative care aims to achieve pain and symptom management, enhanced dignity and quality of life, and psychosocial and spiritual care. It also seeks to incorporate care for patients' broader families and facilitating access to appropriate services and support. High-quality communication is crucial for achieving these aims. It enables healthcare users and providers to make decisions that underpin the care that is provided and the quality of the life that is possible for patients and their families.Although both users and providers recognize the value of high-quality communication with and about children who have life-limiting conditions, this does not mean that these stakeholders necessarily share the same perspective of what constitutes high-quality communication and the best way of accomplishing this. Focusing on healthcare users' experiences of communication with healthcare professionals about children who have life-limiting conditions, the present review will explore the subjective impact of professionals' communication on the people for whom they provide care.It may be necessary to consider a range of contextual factors to understand healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. For instance, age, developmental stage, cognitive capacity, emotional and social strengths, and family dynamics can influence a child's level of involvement in discussions about their condition and care. Although there are factors that appear more consistent across the range of pediatric palliative care users, such as parents' preferences for being treated by healthcare professionals as partners in making decisions about the care of their child, there is not always such consistency. Nor is it clear whether such findings can be generalized across different cultural contexts. In appraising existing research, this systematic review will therefore consider the relationship between the context of individual studies and their reported findings.The primary aim of this review is to identify, appraise and synthesize existing qualitative evidence of healthcare users' experiences of communicating with healthcare professionals about children who have life-limiting conditions. The review will consider relevant details of these findings, particularly whether factors like age are relevant for understanding particular experiences of communication. An outcome of this review will be the identification of best available qualitative evidence that can be used to inform professional practice, as well as an identification of priorities for future research in pediatric palliative care.A preliminary search in MEDLINE and CINAHL found primary studies exploring healthcare users' experiences of aspects of communicating with healthcare professionals about children who have life-limiting conditions. A search was also conducted for existing systematic reviews in PubMed, CINAHL, EMBASE, PsycINFO, the Cochrane Database of Systematic Reviews, the JBI Database of Systematic Reviews and Implementation Reports, and PROSPERO. No systematic reviews on this topic were found.

Hope and persuasion by physicians during informed consent.

PubMed

Miller, Victoria A; Cousino, Melissa; Leek, Angela C; Kodish, Eric D

2014-10-10

To describe hopeful and persuasive messages communicated by physicians during informed consent for phase I trials and examine whether such communication is associated with physician and parent ratings of the likelihood of benefit, physician and parent ratings of the strength of the physician's recommendation to enroll, parent ratings of control, and parent ratings of perceived pressure. Participants were children with cancer (n = 85) who were offered a phase I trial along with their parents and physicians. Informed consent conferences (ICCs) were audiotaped and coded for physician communication of hope and persuasion. Parents completed an interview (n = 60), and physicians completed a case-specific questionnaire. The most frequent hopeful statements related to expectations of positive outcomes and provision of options. Physicians failed to mention no treatment and/or palliative care as options in 68% of ICCs and that the disease was incurable in 85% of ICCs. When physicians mentioned no treatment and/or palliative care as options, both physicians and parents rated the physician's strength of recommendation to enroll in the trial lower. Hopes and goals other than cure or longer life were infrequently mentioned, and a minority of physicians communicated that the disease was incurable and that no treatment and/or palliative care were options. These findings are of concern, given the low likelihood of medical benefit from phase I trials. Physicians have an important role to play in helping families develop alternative goals when no curative options remain. © 2014 by American Society of Clinical Oncology.

Hope and Persuasion by Physicians During Informed Consent

PubMed Central

Miller, Victoria A.; Cousino, Melissa; Leek, Angela C.; Kodish, Eric D.

2014-01-01

Purpose To describe hopeful and persuasive messages communicated by physicians during informed consent for phase I trials and examine whether such communication is associated with physician and parent ratings of the likelihood of benefit, physician and parent ratings of the strength of the physician's recommendation to enroll, parent ratings of control, and parent ratings of perceived pressure. Patients and Methods Participants were children with cancer (n = 85) who were offered a phase I trial along with their parents and physicians. Informed consent conferences (ICCs) were audiotaped and coded for physician communication of hope and persuasion. Parents completed an interview (n = 60), and physicians completed a case-specific questionnaire. Results The most frequent hopeful statements related to expectations of positive outcomes and provision of options. Physicians failed to mention no treatment and/or palliative care as options in 68% of ICCs and that the disease was incurable in 85% of ICCs. When physicians mentioned no treatment and/or palliative care as options, both physicians and parents rated the physician's strength of recommendation to enroll in the trial lower. Conclusion Hopes and goals other than cure or longer life were infrequently mentioned, and a minority of physicians communicated that the disease was incurable and that no treatment and/or palliative care were options. These findings are of concern, given the low likelihood of medical benefit from phase I trials. Physicians have an important role to play in helping families develop alternative goals when no curative options remain. PMID:25199753

The Accuracy of Physicians' Clinical Predictions of Survival in Patients With Advanced Cancer.

PubMed

Amano, Koji; Maeda, Isseki; Shimoyama, Satofumi; Shinjo, Takuya; Shirayama, Hiroto; Yamada, Takeshi; Ono, Shigeki; Yamamoto, Ryo; Yamamoto, Naoki; Shishido, Hideki; Shimizu, Mie; Kawahara, Masanori; Aoki, Shigeru; Demizu, Akira; Goshima, Masahiro; Goto, Keiji; Gyoda, Yasuaki; Hashimoto, Kotaro; Otomo, Sen; Sekimoto, Masako; Shibata, Takemi; Sugimoto, Yuka; Morita, Tatsuya

2015-08-01

Accurate prognoses are needed for patients with advanced cancer. To evaluate the accuracy of physicians' clinical predictions of survival (CPS) and assess the relationship between CPS and actual survival (AS) in patients with advanced cancer in palliative care units, hospital palliative care teams, and home palliative care services, as well as those receiving chemotherapy. This was a multicenter prospective cohort study conducted in 58 palliative care service centers in Japan. The palliative care physicians evaluated patients on the first day of admission and followed up all patients to their death or six months after enrollment. We evaluated the accuracy of CPS and assessed the relationship between CPS and AS in the four groups. We obtained a total of 2036 patients: 470, 764, 404, and 398 in hospital palliative care teams, palliative care units, home palliative care services, and chemotherapy, respectively. The proportion of accurate CPS (0.67-1.33 times AS) was 35% (95% CI 33-37%) in the total sample and ranged from 32% to 39% in each setting. While the proportion of patients living longer than CPS (pessimistic CPS) was 20% (95% CI 18-22%) in the total sample, ranging from 15% to 23% in each setting, the proportion of patients living shorter than CPS (optimistic CPS) was 45% (95% CI 43-47%) in the total sample, ranging from 43% to 49% in each setting. Physicians tend to overestimate when predicting survival in all palliative care patients, including those receiving chemotherapy. Copyright © 2015 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

Improving cancer patients' pain: the impact of the hospital specialist palliative care team.

PubMed

Jack, B; Hillier, V; Williams, A; Oldham, J

2006-12-01

Pain is reported to occur in the majority of patients with advanced cancer and is one of the main reasons for referral to a hospital specialist palliative care team. Yet despite this, there is a paucity of research into the impact the hospital specialist palliative care team has on pain control in patients. A non-equivalent control group design using a quota sample investigated 100 cancer patients who had been admitted to hospital for symptom control. Fifty patients received specialist hospital palliative care team intervention compared with 50 patients receiving traditional care. Outcome was assessed using the Palliative Care Assessment (PACA) tool on three occasions. There was no difference between the groups on the initial assessment and the results indicated that all cancer patients admitted to hospital had a significant improvement in their pain control. However, the patients who had the additional input of the palliative care team demonstrated a statistically significant greater improvement than the control group (P<0.001). Potential explanations are made for the results including the enhanced knowledge and skills of the hospital specialist palliative care team.

Spiritual care as a dimension of holistic care: a relational interpretation.

PubMed

Bush, Tony; Bruni, Nina

2008-11-01

This article reports on a phenomenological study undertaken to explore the meaning of spiritual care as described by a group of palliative care professionals. The research process was informed by van Manen's (1990) hermeneutic phenomenological approach. Eight palliative care professionals (nurses, complementary therapists and pastoral carers) were recruited from a community palliative care agency in Melbourne, Victoria, which provided home-based palliative care. All participants were female and came from diverse ethnic backgrounds. Data were collected by in-depth conversational interviews and were analyzed thematically. Two themes emerged: 'a living nexus between spiritual care, spirituality and holism' and 'a world of relationships'. The findings of the study point to the need for healthcare professionals to incorporate spiritual care guidelines into practice in order for palliative care to be truly representative of holistic health care.

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

PubMed

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

2018-04-05

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

Questions and answers on the Belgian model of integral end-of-life care: experiment? Prototype? : "Eu-euthanasia": the close historical, and evidently synergistic, relationship between palliative care and euthanasia in Belgium: an interview with a doctor involved in the early development of both and two of his successors.

PubMed

Bernheim, Jan L; Distelmans, Wim; Mullie, Arsène; Ashby, Michael A

2014-12-01

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors.

Productivity in Pediatric Palliative Care: Measuring and Monitoring an Elusive Metric.

PubMed

Kaye, Erica C; Abramson, Zachary R; Snaman, Jennifer M; Friebert, Sarah E; Baker, Justin N

2017-05-01

Workforce productivity is poorly defined in health care. Particularly in the field of pediatric palliative care (PPC), the absence of consensus metrics impedes aggregation and analysis of data to track workforce efficiency and effectiveness. Lack of uniformly measured data also compromises the development of innovative strategies to improve productivity and hinders investigation of the link between productivity and quality of care, which are interrelated but not interchangeable. To review the literature regarding the definition and measurement of productivity in PPC; to identify barriers to productivity within traditional PPC models; and to recommend novel metrics to study productivity as a component of quality care in PPC. PubMed ® and Cochrane Database of Systematic Reviews searches for scholarly literature were performed using key words (pediatric palliative care, palliative care, team, workforce, workflow, productivity, algorithm, quality care, quality improvement, quality metric, inpatient, hospital, consultation, model) for articles published between 2000 and 2016. Organizational searches of Center to Advance Palliative Care, National Hospice and Palliative Care Organization, National Association for Home Care & Hospice, American Academy of Hospice and Palliative Medicine, Hospice and Palliative Nurses Association, National Quality Forum, and National Consensus Project for Quality Palliative Care were also performed. Additional semistructured interviews were conducted with directors from seven prominent PPC programs across the U.S. to review standard operating procedures for PPC team workflow and productivity. Little consensus exists in the PPC field regarding optimal ways to define, measure, and analyze provider and program productivity. Barriers to accurate monitoring of productivity include difficulties with identification, measurement, and interpretation of metrics applicable to an interdisciplinary care paradigm. In the context of inefficiencies inherent to traditional consultation models, novel productivity metrics are proposed. Further research is needed to determine optimal metrics for monitoring productivity within PPC teams. Innovative approaches should be studied with the goal of improving efficiency of care without compromising value. Copyright © 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.