National Palliative Care Policy Research Articles

Palliative Care in Turkey: Insights from experts through key informant interviews

BackgroundThe rising demand for palliative-care (PC) in Turkey, driven by cancer, has prompted increased attention since the national PC policy in 2010. Despite this, the healthcare system predominantly focuses on curative care, lacking PC integration. This is due to combination of administrative obstacles, fragmented coordination, education and training scarcity. Thus urgent strategies are required to address the growing PC gap. This qualitative study explores the perspectives of PC professionals and policymakers, providing valuable insights for national policy and program development. Material and methodThis study employed an exploratory approach using key informant interviews. Interviews were conducted using semi-structured questionnaire. It sought to collect relevant contextual information in order to achieve its aim. Thematic content analysis was employed to examine and interpret the data. ResultTwenty-one participants, comprising nurses, specialists, and oncologists, were interviewed. The findings are encompassed by eight themes. 1) Integrated Care, highlights the importance of cohesive collaboration among diverse healthcare providers, social care services, and primary care systems to ensure comprehensive and effective care. 2) Meeting social care needs underscores significance of addressing a wide spectrum of patient requirements, including psychosocial support. 3) PC education emphasizes necessity of equipping healthcare professionals with the requisite skills and knowledge through comprehensive training. 4) Legalizing do-notresuscitate orders draws attention to the critical discussion surrounding end-of-life decisions. 5) Empowering communities recognizes bridging knowledge gaps among patients and caregivers. 6) Decision-Making underscores the importance of informed and collaborative decision-making processes. 7) Cultural considerations urge the adoption of culturally sensitive approaches. 8) Ongoing challenges shed light on persistent issues such as provider attitudes, and administrative hurdles. ConclusionThis study highlights essential factors for establishing an integrated PC program for cancer patients in Turkey. The existing healthcare system in Turkey offers opportunities for advanced PC. Successful implementation demands strategic actions to facilitate meaningful transformation.

Transforming the Palliative Care Scenario in Brazil with the National Palliative Care Policy

Transforming the Palliative Care Scenario in Brazil with the National Palliative Care Policy

How social workers are positioned and constructed as contributors within national palliative care policies in Sweden: a policy analysis.

Palliative care is expected to acknowledge physical, psychological, emotional, spiritual, and social needs, to which social workers can contribute with expertise on recognizing the importance of social relations and how social inequalities impact on individuals. The social work profession faces challenges in claiming their contributions in the hierarchies of medical professions. Polices play an important role in constructing and positioning responsibilities of professions. To analyze how social workers are positioned as contributors to palliative care within national-level policies in Sweden. A policy analysis was conducted through a constructivist lens. Data were collected from 10 Swedish national-level policy documents on palliative care. Three themes emerged: "A natural presence conveying special expertise"; "Emotional conversational support before and after death"; and "Practical support." Overall, social workers' contribution was vaguely described and in similar ways as registered nurses. In Swedish policies analyzed, social workers' contributions were difficult to differentiate from that of registered nurses, which may complicate their mutual collaborations and cause confusion for individuals at the end of life and their next of kin. Future research on how different professions are positioned within palliative care is needed to reduce risks of role blurring between professions with similar aims. Moreover, given social workers long history of psychosocial knowledge, meanings of this concept need to be further acknowledged.

Brazilian National Palliative Care Policy: reflections based on the 2030 Agenda for Sustainable Development

Brazilian National Palliative Care Policy: reflections based on the 2030 Agenda for Sustainable Development

Brazilian National Palliative Care Policy: reflections based on the 2030 Agenda for Sustainable Development

Brazilian National Palliative Care Policy: reflections based on the 2030 Agenda for Sustainable Development

Development of the Palliative Care Law and Policy GPS to Assess National Policies in Palliative Care.

Background: State policy-making to address disparities in access to and quality of palliative care is increasing. Yet, there is no mechanism to systematically assess palliative care policies nationally. Methods: We describe the development of the Palliative Care Law and Policy GPS by the Center to Advance Palliative Care and the Yale Solomon Center for Health Law and Policy. The GPS is an online, searchable repository of national palliative care policies. We developed the GPS by conducting a systematic search of Lexis+, LegiScan, and state health departments for palliative care-related statutes and proposed legislation, categorizing policies into workforce, payment, quality/standards, clinical skill-building, public awareness, telehealth, and pediatric palliative care, and creating an interactive website. Conclusions and Implications: The GPS is a critical tool that can advance palliative care research, practice, and policy. Next steps include the expansion of data from 2010 onward as well as gathering state-level regulations and partially automating search and updating functions.

Palliative care stakeholders in Canada

BackgroundImproving access to palliative care for Canadians requires a focused collective effort towards palliative and end-of-life care advocacy and policy. However, evolution of modern palliative care in Canada has resulted in stakeholders working in isolation. Identification of stakeholders is an important step to ensure that efforts to improve palliative care are coordinated. The purpose of this analysis is to collectively identify, classify and prioritize stakeholders who made contributions to national palliative care policies in Canada.MethodsA systematic grey literature search was conducted examining policy documents (i.e. policy reports, legislative bills, judicial court cases) in the field of palliative care, end-of-life care and medical assistance in dying, at the national level, over the last two decades. Organizations’ names were extracted directly or derived from individuals’ affiliations. We then classified stakeholders using an adapted classification approach and developed an algorithm to prioritize their contributions towards the publication of these documents.ResultsOver 800 organizations contributed to 115 documents (41 policy reports, 11 legislative, 63 judicial). Discussions regarding national palliative care policy over the last two decades peaked in 2016. Stakeholder organizations contributing to national palliative care policy conversations throughout this period were classified into six types broadly representative of society. The ranking algorithm identified the top 200 prioritized stakeholder organizations.ConclusionsStakeholders from various societal sectors have contributed to national palliative care conversions over the past two decades; however, not all the stakeholder organizations engaged to the same extent. The information is useful when a need arises for increased collaboration between stakeholders and can be a starting point for developing more effective engagement strategies.

The changing dynamics of community care and support in rural Malawi: The impact on Women's health and wellbeing at end of life

In this critical ethnographic study, we examined women's end of life experiences in Malawi, one of the few countries in the world with a national palliative care policy. Specifically, we explored how women's and their caregivers' experiences were shaped by family and community care, and material needs. Interviews and observations with female clients of a non-governmental organization in rural Central Malawi, and with their caregivers, revealed that community-level support was both precarious and critical. We found three main themes: (1) I stay with them well, (2) we eat together, and (3) everyone is for themselves. The analysis illustrates the centrality of community care, social in/exclusion, and availability of stable food, shelter, medical, and caregiving resources on health and wellbeing at end of life. We provide recommendations to strengthen community care opportunities and women's resource bases.

Stakeholder perspectives towards implementing the national framework on palliative care in Canada

ContextIn 2018 Health Canada developed a national framework and subsequent action plan for palliative care. Collaboration and implementation by stakeholder organizations however continues to take place without coordination. Little is known about their attitudes toward national policy development and motivation to work together. MethodsWe employ a well-known stakeholder analysis framework to identify and understand the attitudes of key stakeholders. Organizations that have contributed to national palliative policy development over the past 25 years were identified and prioritized. In this paper, we survey key stakeholders to understand their attitudes towards collaboration and implementation of the 2018 Framework. A novel method to identify homogeneous stakeholder cohorts was developed. FindingsFifty-four out of 75 key organizations (72%) completed the survey. Organizations genuinely support the Framework. However, three-quarters of organizations were not confident in their abilities to strongly influence national palliative care policies. Barriers to collaboration include differences in governance models and funding arrangements, a lack of resources and divergent priorities. Homogeneous stakeholder cohorts and in-depth analysis of stakeholder characteristics resulted in recommendations to support targeted engagement strategies. ConclusionsImplementation of national palliative care policies requires a large-scale coordinated approach involving all stakeholders. Recommendations are centered on the premise that targeted and tailored stakeholder engagement needs to be coordinated and is superior to a one-size fits all approach.

Análisis bibliométrico de la producción científica sobre cuidados paliativos en Scopus

Introduction and objective: Palliative care is an approach that improves the quality of life in terminally ill patients. In the coming years, there will be a great need for this service due to an increase in the elderly population and in the diseases that affect this age group. Not all Latin American and Caribbean countries have national palliative care policies. The aim of this study was to describe the scientific production on palliative care in Latin America and the Caribbean. Methods: A bibliometric study on palliative care was conducted in the Scopus database between 1990 and 2019, focusing on papers whose authors had at least one affiliation from Latin America and the Caribbean. Results: A total of 2030 documents were obtained, showing a sustained growth since 2000. The countries with the highest number of published articles were Brazil with 948 (45.65 %), Mexico with 373 (18.36 %), and Argentina with 274 (13.48 %). Clustering by keywords showed the formation of 3 groups: palliative therapy, palliative therapy in cancer, and age group. Discussion: Although there has been an increase in the number of articles published in recent years, the contribution of each country is unequal, with the first 3 countries accounting for more than 75 % of the total number of publications. National policies and research in palliative care should be promoted with the aim of finding other approaches and therapies for patients requiring palliative care.

Palliative Care Advocacy: Why Does It Matter?

Evidence-based advocacy within the United Nations system for integration of palliative care into primary health care is essential to inspire and nurture the political will necessary to support the development and funding of national palliative care policy. National policy is, in turn, essential to underwrite clinical delivery that leaves no patient behind. Although International Association for Hospice and Palliative Care (IAHPC) has engaged in advocacy since its inception, the board decision to prioritize advocacy as part of the organization's strategic plan has taken it to a more formal level. This piece summarizes the content of the basic advocacy course released for IAHPC members, defines palliative care and advocacy, distinguishes advocacy from lobbying, discusses how an international organization such as the IAHPC advocates for palliative care at the global level, and clarifies the vital feedback loop between advocacy and clinical practice.

Palliative care in India–need of the hour

Palliative care is a health care that involve physical, emotional, mental , behavioral care to persons with debilitating illness from diagnosis till death .Obstacles of growth of palliative care in India has various factors as population density, poverty, geographical and cultural diversity, workforce scarcity at base level, limited national palliative care policy and lack of institutional interest in palliative care. For developing country like India continual efforts are needed to overcome these barriers for successful implementation of palliative care ,as now is the need of the hour.

P1.07-19 Palliative Care Social Workers Multi-Dimensional Roles: A Namibian Perspective

This article provides insight on multi-dimensional roles of twenty social workers providing palliative to patients with life-limiting illnesses (e.g. cancer, cardiovascular diseases, diabetes, etc.) in six hospitals in primary care in Namibia. Constructive grounded theory as a qualitative research approach was utilized and an ethnographic study was carried out through in-depth interviews with twenty practicing social workers at six public hospitals in Namibia using an audio-tape recorder to explore how social workers perceive their role in providing palliative care to patients with life-limiting illnesses. Purposive, non-probability sampling through qualitative in-depth face-to-face and open-ended interviews. Data were gathered using a narrative approach. Memoranda through field notes, memos assisted in data analysis, applying traditional grounded theory coding techniques applied. Data collection and analysis were conducted interchangeably. Social workers perform multi-dimensional roles in the provision of palliative care such as advocate, assessor, broker, counsellor, educator, facilitator, patient liaison, mediator, discharge planner and manager of in-country referrals. Understanding the importance of the multi-dimensional roles of social workers in the provision of palliative care to patients with life-limiting illnesses is critical. National palliative care policy guidelines and further research are needed in strengthening social workers’ role in the provision of the field of palliative care. This can be achieved through effective training and capacity building of social workers through continuous education in palliative care.

Non-specialist palliative care: A principle-based concept analysis.

Building palliative care capacity among all healthcare practitioners caring for patients with chronic illnesses, who do not work in specialist palliative care services (non-specialist palliative care), is fundamental in providing more responsive and sustainable palliative care. Varying terminology such as 'generalist', 'basic' and 'a palliative approach' are used to describe this care but do not necessarily mean the same thing. Internationally, there are also variations between levels of palliative care which means that non-specialist palliative care may be applied inconsistently in practice because of this. Thus, a systematic exploration of the concept of non-specialist palliative care is warranted. To advance conceptual, theoretical and operational understandings of and clarity around the concept of non-specialist palliative care. The principle-based method of concept analysis, from the perspective of four overarching principles, such as epistemological, pragmatic, logical and linguistic, were used to analyse non-specialist palliative care. The databases of CINAHL, PubMed, PsycINFO, The Cochrane Library and Embase were searched. Additional searches of grey literature databases, key text books, national palliative care policies and websites of chronic illness and palliative care organisations were also undertaken. Essential attributes of non-specialist palliative care were identified but were generally poorly measured and understood in practice. This concept is strongly associated with quality of life, holism and patient-centred care, and there was blurring of roles and boundaries particularly with specialist palliative care. Non-specialist palliative care is conceptually immature, presenting a challenge for healthcare practitioners on how this clinical care may be planned, delivered and measured.

A Regional Palliative Care Entity Working With a Host Government to Facilitate Exchange Visits From Across Africa to Improve Access to Controlled Medicines for Cancer Patients

Background and context: The African Palliative Care Association (APCA) is a pan-African palliative care organization hosted in Uganda but supporting initiatives to integrate palliative care into national health systems across Africa. Uganda hosts one of the oldest cancer units in Africa and also reconstitutes its own oral liquid morphine to reduce barriers and cost of access to pain control for patients. Aim: The aim of this effort is to expose government officials and other NGOs from other African countries to best practices in oral morphine manufacture, distribution and access to controlled medicines for pain control in cancer and other conditions with a view to benchmark and establish similar or better systems. Strategy/Tactics: APCA working with its funders in consultation with the Ugandan Ministry of Health and Hospice Africa Uganda, facilitates other African ministries of health delegations to conduct study visits in Uganda to benchmark the oral morphine reconstitution, the supply chain mechanisms for its distribution to patients in both public and private hospitals and at home. Program/Policy process: APCA identifies countries with morphine access challenges and makes arrangements for key personnel in those countries in ministries of health, medicines control authority, central medicines stores and national palliative care associations where they exist to spend a study period in Uganda. While in Uganda, the delegations visit the oral morphine manufacturing facility, Hospice Africa Uganda, the Ministry of Health, national medical stores, National Drug Authority, joint medical stores and some of the palliative care providers and training facilities. Once the period with the various stakeholders in the country is completed, the visiting teams draw up plans for implementation and identify required technical assistance from APCA. The costing and sources of funding are identified including contribution from the government in need and then activities are implemented. Outcomes: As a result of this South-to-South approach, Uganda has hosted delegations from 14 African countries. At one instance, it involved the Minister Of Health from Swaziland heading a delegation to Uganda while others sent other high level delegates to the peer learning and bench marking. All these countries have taken steps to establish access to oral liquid morphine as well as policy and capacity building activities for their staff. Some of the countries like Malawi and Swaziland are already having morphine reconstitution and national palliative care policies while others such as Rwanda and Botswana are in the process of changing to the same system. Cancer and palliative care related activities are also being implemented in some of countries. Some countries have graduated to host others like Uganda does. What was learned: The South-to-South learning and bench marking visits are very practical in Africa and have triggered palliative care initiatives at national level.

Engaging Health Ministers to Integrate Palliative Care Into National Health Systems in Africa

Background and context: The African Palliative Care Association (APCA) is a pan-African entity aiming to strengthen health systems in Africa by integrating palliative care for life threatening illnesses. Africa has 54 states and 1.2 billion people with high burdens of cancer, HIV and other infectious and NDCs for which palliative care is needed. Most of them lack national palliative care policies, palliative care delivery system, access to controlled medicines and radiotherapy for treatment or palliation of cancer. Aim: The aim was for APCA to gather ministers of health from Africa to be informed about palliative care and have them support the setting up of sustainable palliative care models in their countries. Strategy/Tactics: The strategies involved contacting individual ministers by country and specifically sharing with them the evidence in terms of palliative care need, making them aware of national, regional and international frameworks that commit them to support palliative care integration into health systems, improving access to controlled medicines, radiotherapy and other palliative care interventions. These frameworks include their own national laws and policies, the 2012 African Common Position on access to controlled substances for pain control, the WHA resolutions related to palliative care and cancer and the international frameworks calling for balancing control and access to controlled medicines for medical and scientific use. APCA working with host ministers of health at the international triennial palliative care conference, organizes a preconference African ministers of health session on palliative care. Program/Policy process: The process involves engaging APCA partners to fund the ministers´ palliative care session. APCA then works with the minister of the host country to invite African ministers to a one-day session where selected ministers share their best practices and challenges. International agencies such as WHO, IAEA, INCB and UICC have a chance to update the ministers too. The host country provides security and protocol requirements while APCA and partners work on the technical input into the day´s program and the preparation of the declaration which is passed at the end of the session. Outcomes: Two ministers of health sessions on palliative care have been held. The first was cohosted with the Minister of Health of South Africa in 2013, attracted 92 delegates from 23 countries. It resulted into the Johannesburg Declaration with ministers committed to supporting palliative care and working together on a consensus before the 2014 WHA Palliative Care Resolution. The 2016 meeting was held in Kampala attracted 163 delegates from 48 countries who signed on the Kampala Declaration committing to implementing the WHA PC Resolution and availing essential technologies. What was learned: Ministers in Africa are open to engaging with civil society to improve the health system and access to cancer and palliative care.

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.

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 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.

Cancer and palliative care in Africa.

Cancer and palliative care in Africa.