Mapping levels of palliative care development: a global view

Palliative care is coming to be regarded as a human right. Yet globally, palliative care development appears patchy and comparative data about the distribution of services are generally unavailable. Our purpose is to categorize hospice-palliative care development, country by country, throughout the world, and then depict this development in a series of world and regional maps. We adopt a multimethod approach, which involves the synthesis of evidence from published and grey literature, regional experts, and a task force of the European Association of Palliative Care. Development is categorized using a four-part typology constructed during a previous review of palliative care in Africa. The four categories are (1) no identified hospice-palliative care activity, (2) capacity building activity but no service, (3) localized palliative care provision, and (4) countries where palliative care activities are approaching integration with mainstream service providers. We found palliative care services in 115/234 countries. Total countries in each category are as follows: (1) no identified activity 78 (33%), (2) capacity building 41 (18%), (3) localized provision 80 (34%), and (4) approaching integration 35 (15%). The ratio of services to population among Group 4 countries ranges from 1:43,000 (in the UK) to 1:4.28 million (in Kenya); among Group 3 countries it ranges from 1:14,000 (in Gibraltar) to 1:158 million (in Pakistan). The typology differentiates levels of palliative care development across the four hemispheres and in rich and poor settings. Although half of the world's countries have a palliative care service, far more are needed before such services are generally accessible worldwide.     

Mapping Levels of Palliative Care Development in 198 Countries: The Situation in 2017

ContextPalliative care is gaining ground globally and is endorsed in high-level policy commitments, but service provision, supporting policies, education, and funding are incommensurate with rapidly growing needs.ObjectivesThe objective of this study was to describe current levels of global palliative care development and report on changes since 2006.MethodsAn online survey of experts in 198 countries generated 2017 data on 10 indicators of palliative care provision, fitted to six categories of development. Factor analysis and discriminant analysis showed the validity of the categorization. Spearman correlation analyses assessed the relationship with World Bank Income Level (WBIL), Human Development Index (HDI), and Universal Health Coverage (UHC).ResultsNumbers (percentages) of countries in each development category were as follows: 1) no known palliative care activity, 47 (24%); 2) capacity-building, 13 (7%); 3a) isolated provision, 65 (33%); 3b) generalized provision, 22 (11%); 4a) preliminary integration into mainstream provision, 21 (11%); 4b) advanced integration, 30 (15%). Development levels were significantly associated with WBIL (r_S = 0.4785), UHC (r_S = 0.5558), and HDI (r_S = 0.5426) with P < 0.001. Net improvement between 2006 and 2017 saw 32 fewer countries in Categories 1/2, 16 more countries in 3a/3b, and 17 more countries in 4a/4b.ConclusionPalliative care at the highest level of provision is available for only 14% of the global population and is concentrated in European countries. An 87% global increase in serious health-related suffering amenable to palliative care interventions is predicted by 2060. With an increasing need, palliative care is not reaching the levels required by at least half of the global population.     

Hospice and palliative care development in Africa: a multi-method review of services and experiences

There is a paucity of information on hospice and palliative care provision in Africa and only a weak evidence base upon which to build policy and practice development. We set out to assess the current state of provision across the continent, mapping the existence of services country by country and exploring the perspectives and experiences of those involved. A multi-method review was conducted involving a synthesis of evidence from published and gray literature, ethnographic field visits to seven countries, qualitative interviews with 94 individuals from 14 countries, and the collation of existing public health data. Forty-seven African countries were reviewed, involving the assistance of numerous hospice and palliative care activists, including clinicians, managers, volunteers, policy makers, and staff of donor organizations. The 47 countries of Africa could be grouped into four categories: no identified hospice or palliative care activity (21 countries); capacity building activity is underway to promote hospice and palliative care delivery (11 countries); localized provision of hospice and palliative care is in place, often heavily supported by external donors (11 countries); and hospice and palliative care services are approaching some measure of integration with mainstream service providers and gaining wider policy recognition (four countries). Overall, services remain scattered and piecemeal in most African countries, and coverage is poor. Nongovernmental organizations are the predominant source of provision. Major difficulties relate to opioid availability, workforce development, and achieving sustainable critical mass. Models exist in Uganda, Kenya, South Africa, and Zimbabwe for the development of affordable, sustainable community-based hospice and palliative care services, but sensitivity is required in adopting Western models of hospice and palliative care for implementation in the African cultural context. Overall, interest in the development of hospice and palliative care in Africa has never been greater.     

Barriers to the Development of Palliative Care in the Countries of Central and Eastern Europe and the Commonwealth of Independent States

During the years of communist rule in the countries of Central and Eastern Europe (CEE) and the Commonwealth of Independent States (CIS), there were few significant palliative care developments. Since the political changes of the 1990s, however, there has been a steady development of palliative care services in this region. In 2005, the European Association for Palliative Care Task Force for the Development of Palliative Care in Europe undertook a qualitative survey among boards of national associations to identify barriers to the development of palliative care in CEE and CIS. By July 2006, 44 of 52 (85%) European countries had responded to the survey, but we report here on the specific results from 22 of 27 (81%) countries in CEE and CIS. Data were analyzed thematically by geographic region and by the degree of development of palliative care in each country. Four significant barriers to the development of palliative care were identified: 1) financial and material resources; 2) problems relating to opioid availability; 3) lack of public awareness and government recognition of palliative care as a field of specialization; and 4) lack of palliative care education and training programs. Despite huge variations in the levels of provision across the countries of CEE and the CIS, data collected in the qualitative survey reveal that the development of palliative care in many countries continues to remain uneven, uncoordinated, and poorly integrated across wider health care systems, mainly as a result of inadequate investment and limited palliative care service capacity.     

Roles, service knowledge and priorities in the provision of palliative care: a postal survey of London GPs

OBJECTIVES: To explore general practitioners' (GPs) current involvement in and attitudes towards the provision of palliative care in primary care. METHODS: Postal survey of 356 London-based GPs, assessing attitudes towards palliative care provision, district nursing and specialist palliative care services, and priorities for future service development. RESULTS: Currently, 65% of GPs were providing palliative care to patients on their list; 72% agreed or strongly agreed palliative care was a central part of their role; and 27% wanted to hand care over to specialists. Most GPs (66%) disagreed with the statement that 'palliative care is mainly district nursing (DN) work'. Many were unaware of out-of-hours DN and specialist palliative care services. Multi-variable analysis found four GP characteristics--larger practice size, more years experience as a GP, receipt of palliative care education, and current provision of palliative care--were associated with agreement that palliative care was central to a GP's role. CONCLUSION: A minority of NHS GPs in London would rather have no involvement in palliative care in primary care. Knowledge of current services for palliative care is generally poor among GPs. These findings highlight potential gaps in services, particularly in small practices. Specialists will need to consider these factors in working with GPs to develop primary palliative care and to enable greater access to specialist palliative care.     

Mainstreaming palliative care for cancer patients in the acute hospital setting.

Palliative care is now emerging as an integrated part of mainstream health care delivery. The importance of patient choice regarding place of dying means that a substantial proportion of palliative care provision occurs in community settings. In part, this is due to the inappropriateness of the acute hospital setting for the care of dying patients. However, most patients with cancer and other terminal illnesses are diagnosed and treated in acute hospitals. Acute hospitals are also the most common setting where people actually die. Therefore, there remains a need for skilled and compassionate provision for the care of dying patients in the acute hospital setting. This paper presents a case for the provision of palliative care services in teaching hospitals. It further argues that a high level of integration between cancer treatment services and palliative care services is needed to optimize the care of cancer patients.     

Provider perspectives on palliative care needs at a major teaching hospital

Jericho Metropolitan Hospital (JMH) is a major Australian teaching hospital which lacked a designated palliative care service at the time this study was conducted. A questionnaire addressing palliative care service needs, and educational and support needs of staff, was sent to 267 multi-disciplinary oncology staff at JMH. A response rate of 83% was achieved. Staff identified a number of palliative care needs that were being particularly poorly addressed by existing services. These included: spiritual support, cultural needs, grief and bereavement support, pleasant surroundings, adequate privacy and facilities for families. The majority of respondents identified the following issues as critical problems in palliative care provision: lack of a designated palliative care service, lack of palliative care education of staff, unmanageable caseloads and inadequate physical facilities for the provision of care. Only 24% of respondents reported having had any palliative care education, and 92% of respondents expressed a need for further education. The majority of respondents (79%) expressed a need for improved staff support. There was a significant association between perceived need for improved support and professional discipline (chi2 = 31.33, P < 0.002), with medical staff being significantly less likely than other staff groups to report a need for improved support. Overall, the health providers surveyed identified major deficiencies in the provision of palliative care to cancer patients at JMH and in the palliative care education and support for staff caring for terminally ill cancer patients. The findings support the need for a designated palliative care service at JMH to improve the standard of care of dying cancer patients, and the need for improved palliative care education and support for staff.     

Effective interagency and interprofessional working: facilitators and barriers

In the UK the provision of palliative care is not the sole responsibility of the National Health Service (NHS); there is an overlap with continuing care, which falls within the remit of local authority social services departments. In addition, hospice and palliative care services are often considerably dependent on charities. Interagency and interdisciplinary working are, therefore, central to the successful delivery of palliative care. A multiple (four case) case study design was used to explore the provisions of palliative and continuing care. The analysis identified the antecedents, structures and processes involved in the delivery of interprofessional working, along with the consequences of these in either a good model or one where problems were likely to prevail. Individual activities, roles and specific service configurations seemed far less significant than the overall culture, stability and long-term commitment to a service in a given area. Time is required for new service configurations to stabilize so that staff are able to overcome barriers and develop the necessary facilitators for quality care provision.     

Common threads? Palliative care service developments in seven European countries

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.     

A comparative review of palliative care development in six countries represented by the Middle East Cancer Consortium (MECC)

Palliative care development and services were reviewed in the region represented by the six members of the Middle East Cancer Consortium: Cyprus, Egypt, Israel, Jordan, the Palestinian Authority, and Turkey. The multimethod review synthesized evidence from ethnographic field visits to inpatient units, home care hospice teams and free-standing hospices, including interviews with hospice and palliative care clinicians, administrators, volunteers, policy makers and academic researchers. Public health data and relevant literature were collated together with internet-accessed information on services and health care systems. A total of 69 services were located; two country members have a history of relatively sustained development of hospice and palliative care, but provision across the Middle East Cancer Consortium region is highly variable at a local level. Considerable barriers to service development were identified in a region already struggling with many military and political conflicts. Key problems are a lack of secure funds and government support, inadequate professional training programs, opioid phobia in professionals and the public, and a lack of awareness and understanding of palliative care needs at public, government, and professional levels. Key areas for further attention were increasing national and international professional training and public education programs, improving opioid legislation and health care policies, negotiating for secure government or health insurance funding provision, raising awareness about the need for pediatric services and for patients with other illnesses, as well as for those with cancer, and working to integrate palliative care into mainstream health service provision and education.     

Sustaining complementary therapy provision in primary care: lessons from existing services

OBJECTIVE: To examine factors which sustain complementary therapy services in primary care in order to inform policy making in a context of rapid change. DESIGN: In-depth qualitative case studies, including semi-structured interviews with key informants. SETTING: 10 existing schemes of complementary therapy provision in primary care across England. RESULTS: GPs and complementary practitioners reported wide-ranging benefits from complementary therapy provision in primary care. However, they felt that their ability to sustain complementary therapy provision was mediated by a) funding, b) the need for research, and c) appropriate service delivery mechanisms. a) Many schemes were the result of and sustained by personal vision. As such they had negotiated a variety of funding sources over a considerable period, against a background perception that continued funding was uncertain. b) Most informants believed that more research was needed to provide a solid evidence base for service continuation and development, in particular clinical and cost-effectiveness work. c) The manner of service delivery, notably whether a service was located within a general practice or in a referral centre, was seen as having implications for the integration of practitioners and for patient access to services. CONCLUSIONS: Current complementary therapy provision in primary care has developed on an 'ad hoc' basis. In particular, the existence of GP fundholding in the 1990s, in which primary care physicians were able to purchase health services on a practice basis, facilitated the development of services in this way. Within the current Primary Care Group context, where purchasing decisions are made collectively by a group of general practices within a region, consideration needs to be given to both the continuity of schemes already in existence and to whether a more standardized approach to service development will be required to facilitate sustainable provision.     

Improving palliative care provision for patients with heart failure

In the last 14 years, research has identified that patients with heart failure suffer symptoms as severe as people with cancer and would greatly benefit from a palliative care approach. In spite of this fact, it is recognized within the National Service Framework for Heart Failure (Department of Health (DoH), 2000b) and the Cancer Plan (DoH, 2000a) that service provision from a palliative care perspective remains inadequate. In order to address the palliative care needs for patients with heart failure and their families a multidisciplinary team approach between primary and secondary care is needed. This article will review the literature relating to improvement of services from a palliative care perspective. It discusses the quality of life experienced by patients with heart failure and their families and the barriers to providing a palliative care approach from a multidisciplinary team perspective. Finally, it attempts to present future recommendations to develop a structured service provision.     

Equity of access to adult hospice inpatient care within north-west England

There is a growing debate about the question of equity of access to hospice and palliative care services. Even countries with relatively well developed palliative care systems are considered to have problems of access and inequity of provision. Despite these concerns, we still lack a relevant evidence base to serve as a guide to action. We present an analysis of access to adult hospice inpatient provision in the north-west region of England that employs Geographical Information Systems (GIS). Measures of the possible demand for, and supply of, hospice inpatient services are used to determine the potential accessibility of cancer patients, assessed at the level of small areas (electoral wards). Further, the use of deprivation scores permits an analysis of the equity of access to adult inpatient hospice care, leading to the identification of areas where additional service provision may be warranted. Our research is subject to a number of caveats--it is limited to inpatient hospice provision and does not include other kinds of inpatient and community-based palliative care services. Likewise, we recognise that not everyone with cancer will require palliative care and also that palliative care needs exist among those with nonmalignant conditions. Nevertheless, our methodology is one that can also be applied more generally.     

District nurses' perceptions of palliative care services: part 2

The overall aim of this study was to examine district nurses' (DNs') perceptions of palliative care services within the community setting. A questionnaire which focused on the key areas of defining palliative care, perception of roles, communication, service provision and the education and training needs of DNS was used. This was designed following a review of the literature and combined with data from phase one of the study (Vol 5(5): 215-222), which involved focus group interviews with DNs. The questionnaire was distributed to district nursing sisters (n = 66) within two community trusts in Northern Ireland. Findings suggest that the physical 'doing' aspects of care continue to dominate DNs' perceptions of palliative care and their educational needs. However, the supportive element of the DN's role was also identified alongside the potential role as coordinator. Palliative care service provision was considered adequate and the main services that nurses identified as useful related to the provision of 24-hour care. The main factors identified by nurses as influencing service provision related to organizational issues such as inadequate staffing levels, limited resources and a lack of time.     

Assessment of palliative care needs for people living with HIV/AIDS in Rwanda

Abstract

The rising number of people living with HIV/AIDS (PLWHA) world-wide has made healthcare professionals and policy makers search for accessible healthcare that will meet the needs of people who are suffering from the disease and enhance their quality of life (QoL). This study investigated met and unmet palliative care needs of PLWHA in selected areas in Rwanda. The study sample included 306 participants: PLWHA, healthcare professionals and co-ordinators of HIV/AIDS units. Quantitative and qualitative methodologies were used. The data were analysed separately and then triangulated. In the findings, over 50% of PLWHA had symptoms related to HIV/AIDS most of the time, with the most common symptom being pain. Participation in activities of daily living was associated with the health status of PLWHA (P < 0.001). The most common perceived palliative care needs of PLWHA were: (i) medical needs, psychosocial needs and the need for financial assistance (77%); (ii) home-based care (47%); (iii) nutritional support (44%); and (iv) pain relief and management of other symptoms (43%). Most PLWHA indicated these palliative care needs were unmet, in particular, the need for pain relief, symptom management, financial assistance and nutritional support. Over 50% of healthcare professionals reported they were not trained in palliative care. They indicated that inadequate policy and resources were the main obstacles to the provision of optimal palliative care. Addressing unmet palliative care needs would enhance the QoL of PLWHA. In addition, developing policy related to the provision of palliative care and building the capacity of healthcare providers is essential for the provision of adequate palliative care services in Rwanda.     

Meeting Report

Abstract

There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization’s Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia.     

What constitutes high-quality HIV/AIDS palliative care?

The study assessed the components of high-quality HIV palliative care using the multidimensional model of quality assessment developed by Maxwell (4). Data collection consisted of interviews with individual subjects and focus groups. The interviews took place in three London health authorities. Seven service users and 74 providers of health care and voluntary services were interviewed. Maxwell's model identifies the components of high-quality HIV palliative care as: competent, skilled practitioners (effectiveness); confidential, non-discriminatory, and culturally sensitive care (acceptability); collaborative and coordinated care (efficiency); flexible and responsive care (access and relevance to need); and fair access for all clients (equity). Our results show that the six dimensions of quality appear to be inextricably linked from the client's point of view. Thus, service commissioners and providers need to examine all six of the dimensions when assessing the quality of HIV services. These findings may serve as a model for other palliative care services.     

A Life or “Good Death” Situation? A Worldwide Ecological Study of the National Contexts of Countries That Have and Have Not Implemented Palliative Care

Context

Palliative care advocates argue that service implementation is feasible in all settings. Yet, services have developed patchily in low- and middle-income settings. Beyond Human Development Index indicators, there has been limited engagement with the broader development challenges facing nations tasked with implementing palliative care.

Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided

Individuals with a primary malignant brain tumour require intensive palliative care services because of the symptoms and cognitive problems they experience. Many of these patients stay with their families at home, being supported by palliative care home teams rather than being admitted for hospice care. The provision of respite care and community services to support these families goes largely unreported. This study arises out of a need to review support services for patients and carers within one cancer and palliative care service. This retrospective case analysis identifies that there are a range of services used in the community to support patients with primary malignant brain tumours but that only a small proportion receive inpatient hospice care. District nursing services were extensively used but also a high number (74%) of patients were admitted to local hospitals for symptom management. This paper attempts to explore the services utilized but also questions the apparently limited provision of hospice care for supporting individuals in the palliative care stages of such an illness. This paper considers the illness trajectory, the complex symptoms experienced by patients and respite services utilized. Issues of those engaged in informal care giving and in the provision of support for those with a primary malignant glioma are also considered.