Palliative Care Policy Research Articles

Reframing Global Palliative Care Advocacy for the Sustainable Development Goal Era: A Qualitative Study of the Views of International Palliative Care Experts

ContextThe World Health Assembly Palliative Care Resolution in 2014 and the inclusion of palliative care within the sustainable development goals raised optimism that palliative care would no longer be a peripheral aspect of global health. However, no funding, accountability measures, or indicators for palliative care development accompanied these policy developments. This risks health actors continuing to prioritize the attainment of better known target-driven aspects of health care. ObjectivesTo explore the attitudes of international palliative care experts regarding how the future development of palliative care can be accelerated. MethodsAbout 16 international palliative care experts were interviewed for their epistemic expertise. Participants were interviewed face to face or via Skype. Interviews were recorded, transcribed nonverbatim, and analyzed using a thematic approach (NVivo). ResultsParticipants strongly supported the rollout of national palliative care policies around the world for two reasons: to ensure palliative care attracts national funding streams and to attract global funding for palliative care. The absence of a global indicator for palliative care development was considered a severe impediment to the inclusion of palliative care within global efforts toward universal health care. Advocacy partnerships, using human rights approaches with economic frames, were considered the most effective methods of influencing policymakers. ConclusionPalliative care represents a value proposition that is not currently being maximized by advocacy. Advocates should consider palliative care developmentally, focusing on key asks for development and consider how palliative care can contribute to other international development priorities, in particular poverty reduction.

Identifying palliative care needs in a Portuguese liver unit.

Chronic liver disease is a major worldwide cause of morbidity and mortality. Palliative care policies are not clearly established in chronic liver disease. The NECPAL CCOMS-ICO© (NECesidades PALiativas/Palliative Needs) is a tool to identify palliative care needs, including a section for liver disease. The aim of this study was to identify palliative care needs in liver patients hospitalised in a tertiary referral Liver Unit. Single-centre prospective observational study. One hundred and twenty patients with cirrhosis were included and NECPAL questionnaire was applied to all patients in a 7-month period. 84.2% of patients were considered as requiring palliative intervention; however, clinicians identified those needs only in 65.8% of the cases and caregivers in 6.7% of the cases; less than 8% of the patients were referred for palliative care consultation. An excessive use of healthcare resources (positive answer to question 3) was strongly associated with a positive need for palliative care (positive NECPAL): OR 7.305, CI 95% 2.54-20.995, P<.001). An excessive use of healthcare facilities has a sensitivity of 84.2% and a specificity of 42.1% for prediction of a positive NECPAL result (AUC 0.710, 95% CI 0.570-0.850, P=.004). The NECPAL CCOMS-ICO© represents a feasible and easy-to-use tool to identify palliative care needs in patients with chronic liver disease.

Palliative Care on Patients With Paraquat Poisoning: Analysis of 90 Cases From 2005–2016

Summary Background Paraquat poisoning has high mortality rate. Hospice services have been provided by National Health Insurance program in Taiwan since 2000, and were expanded to noncancer illnesses in September 2009. The palliative care strategy and the impact of this expanded palliative care policy on patients with paraquat poisoning remain unclear. Methods The study included 90 in-patients with paraquat poisoning, hospitalized between January 2005 and April 2016. We analyzed these patients by two factors, survivors vs. non-survivors and patients admitted between 2005 and 2010 vs. between 2011 and 2016, to compare the differences in life-sustaining treatment orders, symptom management, and use of non-beneficial life-sustaining treatments. Results The mortality rate was 75.6% and patients progressed rapidly to death (mean time: 74.69 h). 91.2% of non-survivors had a do-not-resuscitate order. Within the 24 h before death, non-survivors in the 2011–2016 group had significantly less treatment with vasopressors (p Conclusion Patients with paraquat poisoning are suitable candidates to have palliative care, owing to the extremely high mortality rate and rapid disease progression. The expanded palliative care policy had a positive impact on terminal paraquat poisoning patients; it decreased non-beneficial life-sustaining treatments in the end-stage of disease. Nevertheless, there is still much room for improvement in our management of paraquat poisoning by reducing non-beneficial life-sustaining treatments and reinforcing palliative treatments.

The African Palliative Care Association (APCA) Atlas of Palliative Care Development in Africa: a comparative analysis

Abstract Background Although there are global studies on palliative care development, none report region-specific indicators of development for each country in Africa. We aimed to develop and deploy a set of indicators to measure the current state of palliative care development in Africa according to WHO's Public Health Strategy for integrating palliative care, including policies, availability and access to medicines, education, and service provision. Methods Qualitative interviews were conducted with 16 country experts between March and August, 2016. From those interviews, 367 indicators were derived, 130 after exclusion criteria and content analysis were performed. The country experts rated the indicators for validity and feasibility, a 14-member international committee of experts participated in a two-round modified UCLA-RAND Delphi consensus, and the coauthors ranked the indicators during November–December 2016. The final 19 indicators were further defined and sent to 66 key country informants from 51 African countries during January–March 2017. Findings Surveys were received from 48 countries. Uganda, South Africa, and Kenya have the highest number of specialised hospice and palliative care services (71% of identified palliative care services); 19% (9/48) have no identified hospice and palliative care services. 22% (12/48) indicated having stand-alone palliative care policies, and 42% (20/48) reported having a dedicated person for palliative care in the Ministry. Zambia, Uganda, South Africa, Kenya, Ghana, and Egypt reported some official form of physician accreditation. Opioid consumption per capita was low (75% of countries had Interpretation There is limited palliative care development in Africa, but there is also a significant improvement in the number of countries with hospice and palliative care services, compared to previous reports. Improvements in advocacy were identified, with more than half of countries reporting a national palliative care association. Governments need to take the steps to improve education, increase the number of services, and ensure safe access to opioids. Funding Arnhold Institute of Global Health at the Icahn School of Medicine at Mount Sinai, the African Palliative Care Association, the International Association for Hospice and Palliative Care, and the Institute for Culture and Society at the University of Navarra.

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

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.

Caring for a family member or friend with dementia at the end of life: A scoping review and implications for palliative care practice

Background: Although people with dementia receive substantial care from informal sources, there is limited research available that investigates how these carers experience end-of-life care. Aim: This review aimed to identify what is currently known about carers’ experiences of providing end-of-life care to a family member or friend with dementia and draw implications for palliative care policy and service provision. Design: A scoping literature review was conducted, first using a targeted key word search, followed by assessments of eligibility based on title and then abstract content. Data sources: Records were sourced through PsycINFO, PubMed and CINAHL databases. Peer-reviewed papers published between 2000 and 2016, reporting on data collected directly from carers, were included for review. Results: Carers’ experience centred on relationships (with care recipients, family and friends and health care professionals) and the specific context of caring for someone with dementia. These broad categories of carers’ experiences had clear influences on them personally, particularly in relation to their sense of self and their wellbeing. Conclusion: Palliative care services would benefit from ensuring holistic approaches to supporting people with dementia, their carers and wider family networks. Tailoring services to the specific context of dementia would enable effective, personalised support throughout extended periods leading up to care recipient death as well as through the challenges faced beyond bereavement.

Qualitative Analysis of Palliative Care for Pediatric Patients With Cancer at Bugando Medical Center: An Evaluation of Barriers to Providing End-of-Life Care in a Resource-Limited Setting.

PurposePalliative care remains an urgent, neglected need in the developing world. Global disparities in end-of-life care for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for palliative care development suitable to this context.MethodsIn-depth interviews were conducted with 20 caregivers of pediatric patients with cancer and 14 hospital staff involved in pediatric end-of-life care. This was combined with 1 month of participant observation through direct clinical care of terminally ill pediatric patients.ResultsData from interviews as well as participant observation revealed several barriers to palliative care: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of end-of-life care in this setting, including community cohesiveness and strong faith background.ConclusionThis study provides a unique but focused description of barriers to palliative care common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective—and more appropriate—palliative care policies for young patients with cancer in the developing world.

Palliative Care Policy Analysis in Iran: A Conceptual Model.

Background:Palliative care programs are rapidly evolving for patients with life-threatening illnesses. Increased and earlier access for facilities is a subject of growing importance in health services, policy, and research.Aim:This study was conducted to explain stakeholders’ perceptions of the factors affecting the design of such a palliative care system and its policy analysis.Methodology:Semi-structured in-depth interviews conducted following purposive sampling of the participants. Twenty-two participants were included in the study. The interviews were analyzed using qualitative-directed content analysis based on "policy analysis triangle" framework.Results:The findings showed the impact of four categories, namely context (political, social, and structural feasibility), content (target setting), process (attracting stakeholder participation, the standardization of care, and education management), and actors (the Ministry of Health and Medical Education, health-care providers, and volunteers) in the analysis of the palliative care policies of Iran.Conclusion:In the past 6 years, attention to palliative care has increased significantly as a result of the National Cancer Research Network with the support of the Ministry of Health. The success of health system plan requires great attention to its aspects of social, political, and executive feasibility. Careful management by policymakers of different stakeholders is vital to ensure support for any national plan, but this is challenging to achieve.

RPS Wales launches palliative care policy at 2018 Medicines Safety Conference

RPS Wales launches palliative care policy at 2018 Medicines Safety Conference

Palliative Curriculum Re-imagined: A Critical Evaluation of the UK Palliative Medicine Syllabus.

The UK Palliative Medicine Syllabus is critically evaluated to assess its relationship and relevance to contemporary palliative care policy and direction. Three criteria are employed for this review: (1) relevance to non-cancer dying, ageing, caregivers, and bereaved populations; (2) uptake and adoption of well-being models of public health alongside traditional illness and disease models of clinical understanding; and (3) uptake and integration of public health insights and methodologies for social support. We conclude that the current syllabus falls dramatically short on all 3 criteria. Suggestions are made for future consultation and revision.

Extremely premature birth, informed written consent, and the Greek ideal of sophrosyne.

Most extremely premature infants die in the intensive care unit or suffer significant neurologic impairment. Many therapies result in unhealthy consequences, and the emotional and financial turmoil for families warrant reappraisal of our motives. Shared decision-making and informed consent in preference-sensitive conditions imply the family: (a) understands the medical problem, (b) grasps the risks and benefits of each therapy, (c) has the opportunity to ask questions and reflect upon options, (d) knows their values and preferences are understood, and (e) accepts or declines therapies without judgment or penalty. Mandatory resuscitation of premature infants or inflexible palliative comfort care policies are inconsistent with the principles of informed consent and shared decision-making. Physicians should emulate the Greek ideal of sophrosyne-virtue inherent to balance, reasoned limits, freedom but restraint, and humility. Informed choice is fundamental to liberty; evidence-based periviability guidelines and decision aids bolstered by structured informed consent ensure process integrity.

End of life care preferences among people of advanced age: LiLACS NZ

BackgroundUnderstanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Māori.MethodsData on end of life preferences were gathered from 147 Māori (aged >80 years) and 291 non- Māori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Māori specific subsections was used.ResultsThe top priority for both Māori and non-Māori participants at end of life was ‘not being a burden to my family’. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Māori participants wanted spiritual practices at end of life than male Māori participants. More male non-Māori participants wanted to be resuscitated than female non- Māori participants.ConclusionsThat a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants’ top concern – namely not being a burden – has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.

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

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.

Palliative Care Development in Kyrgyzstan

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.

Palliative Care in Rwanda: Aiming for Universal Access

In 2011, Rwanda's Ministry of Health set a goal of universal access to palliative care by 2020. Toward this audacious egalitarian and humanitarian goal, the Ministry of Health worked with partners to develop palliative care policies and a strategic plan, secure adequate supplies of opioid for the country, initiate palliative care training programs, and begin studying a model for integrating coordinated palliative care into the public health care system at all levels. It also initiated training of a new cadre of home-based care practitioners to provide palliative care in the home. Based on these developments, the goal appears within reach.

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

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.

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

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.

Hospice &amp; Palliative Care Policy in Korea

Hospice &amp; Palliative Care Policy in Korea

Cancer and palliative care in Africa.

Cancer and palliative care in Africa.

Implementing Evidence-Based Palliative Care Programs and Policy for Cancer Patients: Epidemiologic and Policy Implications of the 2016 American Society of Clinical Oncology Clinical Practice Guideline Update.

The American Society of Clinical Oncology (ASCO) recently convened an Ad Hoc Palliative Care Expert Panel to update a 2012 provisional clinical opinion by conducting a systematic review of clinical trials in palliative care in oncology. The key takeaways from the updated ASCO clinical practice guidelines (CPGs) are that more people should be referred to interdisciplinary palliative care teams and that more palliative care specialists and palliative care-trained oncologists are needed to meet this demand. The following summary statement is based on multiple randomized clinical trials: "Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs" (J Clin Oncol.2017;35(1):96). This paper addresses potential epidemiologic and policy interpretations and implications of the ASCO CPGs. Our review of the CPGs demonstrates that to have clinicians implement these guidelines, there is a need for support from stakeholders across the health-care continuum, health system and institutional change, and changes in health-care financing. Because of rising costs and the need to improve value, the need for coordinated care, and change in end-of-life care patterns, many of these changes are already underway.