Hospice and palliative care development in India: a multimethod review of services and experiences

Palliative care has been developing in India since the mid-1980s, but there is a dearth of evidence about service provision on which to base national policy and practice. The aim of this study was to assess the current state of palliative care in India, mapping the existence of services state by state, and documenting the perspectives and experiences of those involved. A multimethod review was used, which included synthesis of evidence from published and grey literature, ethnographic field visits, qualitative interviews with 87 individuals from 12 states, and collation of existing public health data. The review identified 138 hospice and palliative care services in 16 states and union territories. These are mostly concentrated in large cities, with the exception of Kerala, where they are much more widespread. Nongovernmental organizations, public and private hospitals, and hospices are the predominant sources of provision. We were unable to identify palliative care services in 19 states/union territories. Development of services is uneven, with greater provision evident in the south than the north, but for the majority of states, coverage is poor. Barriers to the development of palliative care include: poverty, population density, geography, opioid availability, workforce development, and limited national palliative care policy. Successful models exist for the development of affordable, sustainable community-based palliative care services. These have arisen from adapting Western models of hospice and palliative care for implementation in the Indian cultural context. Further work is required to ensure that the growing interest in hospice and palliative care in India is used to increase the momentum of progress.     

Mapping Levels of Palliative Care Development: A Global Update

Our purpose is to categorize palliative care development, country by country, throughout the world, showing changes over time. We adopt a multi-method approach. Development is categorized using a six-part typology: Group 1 (no known hospice-palliative care activity) and Group 2 (capacity-building activity) are the same as developed during a previous study (2006), but Groups 3 and 4 have been subdivided to produce two additional levels of categorization: 3a) Isolated palliative care provision, 3b) Generalized palliative care provision, 4a) Countries where hospice-palliative care services are at a stage of preliminary integration into mainstream service provision, and 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision. In 2011, 136 of the world's 234 countries (58%) had at least one palliative care service—an increase of 21 (+9%) from 2006, with the most significant gains having been made in Africa. Advanced integration of palliative care has been achieved in only 20 countries (8.5%). Total countries in each category are as follows: Group 1, 75 (32%); Group 2, 23 (10%); Group 3a, 74 (31.6%); Group 3b, 17 (7.3%); Group 4a, 25 (10.7%); and Group 4b, 20 (8.5%). Ratio of services to population among Group 4a/4b countries ranges from 1:34,000 (in Austria) to 1:8.5 million (in China); among Group 3a/3b countries, from 1:1000 (in Niue) to 1:90 million (in Pakistan). Although more than half of the world's countries have a palliative care service, many countries still have no provision, and major increases are needed before palliative care is generally accessible worldwide.     

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.     

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.     

The Asia Pacific hospice Palliative Care Network: supporting individuals and developing organizations

The Asia Pacific Hospice Palliative Care Network is a network of individuals and organizations involved in hospice and palliative care in Asia and the Pacific. It currently has 938 members in 28 countries, of whom 793 are individual members and 145 are organizations. Since its formation in 2001, its chief activities are the support of individuals working in palliative care services and the development of links between organizations involved in palliative care within each of its sectors. The Network actively encourages the formation of umbrella bodies or national associations within each sector. Education and training is provided through the services of faculty from countries with better developed palliative care services. A diploma course has also been developed in response to regional needs.     

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.     

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.     

Palliative care in Europe: an emerging approach to comparative analysis

At the national level, hospice and palliative care activities have been developing in Europe since the late 1960s. International organisations to support palliative care have been in existence since the late 1980s. It was only in the late 1990s, however, that the first comparative studies of European palliative care development were conducted. This article reviews this history and highlights the main studies and initiatives that have focused on the growth of palliative care in Europe. Evidence to date shows huge variations in the levels of palliative care provision that exist in different countries, as well as some differences in the preferred models of care. The extent to which palliative care provision is integrated with wider health and social care policies appears to be a crucial determinant of success. A sustainable evidence base on palliative care provision in Europe is needed, and there are encouraging signs that this is beginning to develop through close cooperation between key organisations and initiatives in the field.     

Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models,Interventions, and Outcomes

ContextThe progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available.ObjectivesTo systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice.MethodsA systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated.ResultsIn terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services.ConclusionPediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa.     

Funding for palliative care programs in developing countries

There are many palliative care developments in resource-poor regions of the world. Most of them are supported by third-party donors and grant makers. The funding necessary to cover essential palliative care services usually exceeds the financial means of many developing countries. Health care services may have to be complemented by nongovernmental organizations that are dependent on fund raising and voluntary donations from a variety of external sources. Coordinated action by international funding agencies is needed to ensure that the world's poorest people have access to essential medications and appropriate palliative care. To this end, international networking in the palliative care field is vital. There are now a number of collaborative networks that make a significant contribution to the development and sustainability of hospice and palliative care across many resource-poor regions of the world.     

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.     

The PRISMA Symposium 3: lessons from beyond Europe. why invest in research and service development in palliative care? An Australian perspective

Hospice and palliative care services need to be able to compete with finite health care resources. To compete for such funding, the sector needs to continuously improve the evidence base that demonstrates improved outcomes, or else funding will continue to be at the level of a "social good" rather than as services that deliver improved health outcomes. Three questions need to be answered for policy makers and health funders: 1) Why invest health care spending in hospice and palliative care?, 2) Why invest research monies in hospice and palliative care clinical research and health service development?, and 3) How can emerging evidence be more effectively implemented to improve patient outcomes? No single measure captures the net benefit of hospice and palliative care services. By patient-defined parameters, hospice and palliative care services have demonstrated benefits, including physical symptom control. To meet patients' concerns, greater emphasis needs to be placed on maintaining physical independence for a longer period of time. Targeted investment of research funding can deliver further improvements in patient outcomes and models of service delivery. Rigorous studies are feasible and necessary if each patient is going to receive the best possible support. Benchmarking and service development strategies can deliver improved patient outcomes. With routine point-of-care data collection and feedback loops to individual services, patient-valued outcomes and resourcing can be improved in hospice and palliative care. Public-good investments in hospice and palliative care research are vital to building the evidence base for improving the quality of care offered.     

The development of palliative care in national government policy in England, 1986-2000

Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation.     

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.     

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.     

'A bridge to the hospice': the impact of a Community Volunteer Programme in Uganda

In Africa, the need for palliative care provision is escalating with an increasing number of people living with HIV/AIDS, coupled with rising cancer and AIDS-related cancer diagnoses. In Uganda there is a shortage of doctors, particularly in rural areas. To address this Hospice Africa Uganda developed a Community Volunteer Programme to train volunteers to help by providing support to patients in their own homes. The aim of this qualitative study was to evaluate the impact of the Community Volunteer Programme. Sixty-four interviews, with patients (21), community volunteer workers (CVWs) (32), and the hospice clinical teams (11) were conducted, using semi-structured digitally recorded individual, group and focus group interviews, at the Hospice Africa Uganda sites. The results reported the value of the Community Volunteer Programme, including the impact on patients and families, and how the CVWs acted as a 'bridge to the hospice' in identifying patients. Developing financial challenges that are emerging which could potentially impact on the programme were reported. The Community Volunteer Programme appears to be having a positive impact on patients, families and the hospice team, and is a model worthy of consideration by other developing countries to allow the expansion of palliative care.     

Regulating palliative care: the case of hospice

Palliative care services provided to patients and families vary substantially across hospices. Literature suggests regulation can act as a standardizing force in health care delivery. However, little is known about the effect of regulation on the delivery of palliative care in hospice and whether its effect differs for different types of hospice providers. We estimated the association between regulation, defined as Medicare hospice certification, and the delivery of palliative care in hospice using a nationally representative data set of 9,409 patients from 2,066 hospices surveyed in the National Home and Hospice Care Survey, 1992-2000. Using multivariable analysis, we found Medicare hospice certification was associated with a significantly broader range of services provided to patients (odds ratio [OR]=2.45; 95% confidence interval [CI]: 1.16, 5.17). This effect was significantly more pronounced (P-value for interaction=0.001) among for-profit hospices (OR=15.24; 95% CI: 4.06, 57.17) than among nonprofit hospices (OR=1.53; 95% CI: 0.75, 3.14). The effect of ownership on certification differences was most apparent for the provision of skilled nursing (prevalence difference in difference=52.4%), spiritual care (prevalence difference in difference=49.6%), and social services (prevalence difference in difference=48.1%). This study is the first to demonstrate the substantial association between the regulation of hospices and the provision of a multidisciplinary range of services to patients and families. It provides valuable insights regarding the potential role of regulation in standardizing the quality of palliative care across the increasingly diverse palliative care programs developing outside of hospice.     

Changing times: preparing to meet palliative needs in the 21st Century

Globally, 56 million people die each year and for many, in resource-rich as well as resource-poor countries, the process of dying is associated with significant but preventable suffering (Sepulveda et al, 2002; Seymour at al, 2010). Since the introduction of the modern hospice movement in the 1960s, marked by the opening of St Christopher's Hospice in Sydenham, London by the late Dame Cicely Saunders, the principles and practice of palliative care have been disseminated round the world, to the extent that palliative care has been coined by some commentators as a human right (Brennan, 2007). At the end of the first decade of the 21st Century, the provision of palliative care is beginning to feature in the political and policy agendas of many different countries as they seek to respond the challenges of epidemiological and socio-demographic change. The changing age structure of the countries in the developed world has given rise to a growth of palliative care needs among older people, often in association with long-term conditions other than cancer in which the onset of 'dying' is often hard to ascertain; while younger people with complex palliative care needs owing to life-limiting disease or disability are living longer than at any time previously because of changes in medical technology (Davies and Higginson, 2004). In the resource-poor nations, the tragedies of the AIDS pandemic pose a challenge of gargantuan proportions, especially in sub-Saharan Africa.     

‘Juggling amidst complexity’ – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit

Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals. Despite developments evidence suggests hospice care is often not offered to parents in neonatal units (NNU). This study examines perspectives of 17 staff from 3 children's hospices regarding the challenges and opportunities caring for infants in hospice. Data was collected from 3 focus groups and analysed using a thematic approach. Findings suggest that hospice staff juggle many complex issues when caring for infants at the end-of-life. Such issues centre round the referral process from hospital services borne from an apparent reluctance of hospital staff to let go, through involving hospice. Education, partnership working, planning for all possible outcomes seems crucial in further developing quality palliative care for infants and their families.     

The international observatory on end of life care: a global view of palliative care development

The International Observatory on End of Life Care (IOELC) was established at Lancaster University, UK, in 2003. Its aims are to provide clear and accessible research-based information about hospice and palliative care provision in the international context. Dissemination is via the Observatory web site (www.eolc-observatory.net), as well as through published articles, monographs, reports, and other media, in ways that facilitate cross-national comparative analysis and stimulate practical development. Primary research studies and reviews are undertaken to generate relevant information. We describe the methods adopted by the IOELC and the range of projects recently undertaken. In particular, we give details of the IOELC categorization of hospice and palliative care development, which can be applied at the country level to facilitate international comparison. We show how this has been used to create a "world map" of hospice and palliative care provision and indicate some of the uses to which this can be put and the ways in which it can be refined over time.