Palliative care and hospice outside of the United States

INTRODUCTION — Palliative care is an interdisciplinary medical specialty that focuses on preventing and relieving suffering and on supporting the best possible quality of life for patients and their families facing serious illness. The primary tenets of palliative care are symptom management; establishing goals of care that are in keeping with the patient's values and preferences; consistent and sustained communication between the patient and all those involved in their care; psychosocial, spiritual, and practical support, both to patients and their family caregivers; and coordination across sites of care.

This topic will discuss palliative care and hospice services outside of the United States. Other overviews of palliative and hospice care are available separately. (See "Benefits, services, and models of subspecialty palliative care" and "Hospice: Philosophy of care and appropriate utilization in the United States".)

GLOBAL RECOGNITION — Hospice and palliative medicine is a recognized medical subspecialty in the United States and internationally, including in Canada, England, Ireland, Australia, and New Zealand. Many European countries are also in the process of developing certification for palliative care. Unfortunately, in many other parts of the world, access to quality palliative care is limited [1].

This is slowly changing:

●In 2000, palliative care was included in the United Nation's International Covenant on Economic, Social, and Cultural Rights, which states: "States are under the obligation to respect the right to health by, inter alia, refraining from denying or limiting equal access for all persons… to preventive, curative, and palliative health services."

●Essential medicines for palliative care were included in the 18^th World Health Organization (WHO) essential medicines list in 2013 [2].

●The 2014 World Health Assembly (WHA) passed a resolution appealing to member countries to incorporate palliative care services into the mainstream health care system [3]. Palliative care has been integrated in subsequent WHO and WHA resolutions, although these were nonbinding in character, making for difficulties in global implementation and in the assessment of impact on national policies [4-6].

●In 2016, a civil society report cited examples of progress following WHA resolution on the integration of palliative care into the health policy (India, Colombia, Romania), palliative care education (Jordan, Panama, Morocco), drug availability (Mexico), and in rolling out palliative care services (Ethiopia) [7]. However, much development at the country level continues to be spearheaded by motivated individuals and nongovernmental organizations (NGOs) with limited financial, political, and policy influence [8].

●The Declaration of Astana (2018), focusing on primary care as an aspect of universal health coverage and sustainable development goals, also included palliative care across a spectrum of provision that must be accessible to all [9].

GLOBAL NEED

High- and low-income designations — Because access to medical care in general differs by the socioeconomic realities in individual countries, access to palliative care can be stratified by whether one lives in a high- versus low-income country.

The World Bank defines economies by the World Bank Atlas method, based upon annual gross national income (expressed in USD) per capita. Definitions for the fiscal year 2016 are as follows:

●Low income – $1045 or less

●Lower-middle income – $1045 to $4125

●Upper-middle income – $4125 to $12,736

●High income – $12,736 or more

In this topic, low- and middle-income countries (LMICs) will be grouped together as low-income countries because, for economic purposes, the World Bank sometimes refers to them as "developing" countries. A comprehensive list of countries that fall into these categories is available at the World Bank website.

Recognizing the challenges of economic constraints, in 2018 the American Society of Clinical Oncology (ASCO) released guidelines for implementing palliative care for patients with cancer and their caregivers in resource-limited settings [10].

Unequal availability — The World Health Organization (WHO) estimates that the great majority (78 percent) of adults and children (98 percent) in need of end-of-life care live in LMICs [11]. However, only 9 percent of the world's countries, all of relatively high income, are considered to have advanced levels of palliative care integrated into mainstream health services [12]. One 2013 study of over 230 countries evaluated the availability of palliative care internationally and reported that 58 percent had one or more palliative care systems available [13]. Separate studies indicate that specialist-level palliative care is available in only approximately 30 to 45 percent of nations [14,15].

There is huge geographic variation in coverage. For example, the estimations of coverage for inpatient palliative care service, home care team, and hospital support team are 62, 52, and 31 percent for Western Europe and 20, 14, and 3 percent for Central and Eastern Europe, respectively [16]. In another example, the ratio of palliative care services to population ranges from 1:1000 (in Niue, an island country in the South Pacific Ocean) to 1:90 million (in Pakistan) [11].

Although it has been estimated that 5.3 million children experience serious health-related suffering globally [6], accessibility to pediatric palliative care continues to be disparate across the world, and pediatric palliative care services are considered underdeveloped across Asia, Africa, and Latin America compared with North America and Europe [17].

A report on the global situation in 2017 mentioned that countries with the highest levels of palliative care development contain 41.8 percent of the world population and are concentrated mainly in the global north, while 80 percent of the need for palliative care is in LMICs; 53.3 percent of the world's population is in countries in the global south, with very limited palliative care development. The remainder of the global population (4.8 percent) is located in countries that have no known palliative care activity or are only at the level of capacity building, and in territories that were not included in the survey (0.1 percent). These two lowest categories contain 60 countries and account for less than 5 percent of the global population. Eighty-seven countries are in categories with some availability of palliative care, but with weak development, and these make up more than half of the world population [18].

The Lancet Commission Report, published in 2018, noted that 80 percent of the more than 25.5 million people who died in 2015 experiencing serious health-related suffering were from resource-limited regions, and the vast majority lacked access to palliative care and pain relief [19].

Also of concern, up to 83 percent of the world's population lives in countries with limited or nonexistent access to opioid medicines that are essential for pain relief in advanced diseases [20]. Further, between 2015 and 2017, 89 percent of opioids were consumed by 10 percent of the world's population, with consumption highest in Germany, followed by Iceland, the United States, and Canada [21]. (See 'Pain medication' below and "Cancer pain management with opioids: Optimizing analgesia".)

High-income countries — High-income countries have greater integration of palliative care as part of their health care systems, as exemplified in the United States, Canada, and Great Britain. In addition, many high-income countries provide near-universal access to pediatric palliative care [22] (see "Benefits, services, and models of subspecialty palliative care"). The majority of countries with an established national palliative care strategy, reference to palliative care in a national law, or a dedicated individual or unit within government responsible for palliative care are in the high- or upper-middle-income categories [23].

One study ranked countries (n = 40) on the availability of services using a Quality of Death Index comprised of 27 indices, including expectancy, health care spending as a percentage of gross domestic product, public awareness of end-of-life care, opioid availability, and existence of a national palliative care strategy or agenda [24]. As might be expected, high-income countries had greater scores (eg, the United Kingdom scored at the top; South Korea scored in the middle) compared with low-income countries (eg, India).

However, the coverage and quality of care are not always uniform within a country. As an example, there is widespread geographical variability in specialist palliative care services in the United Kingdom. It has also been noticed that gaps in knowledge and implementation of indigenous‐centered palliative care approaches are significant in Canada [25].

Low-income countries — There is a significant need for palliative care services among populations in low-income, resource-constrained countries. Nonmalignant conditions generally predominate as the causes of death in these areas. (See 'Common diseases' below.)

However, the need for palliative care in the case of cancers is also high in low-income countries due to late diagnosis, inadequate curative care facilities, and difficulties in access to care. In India, for example, more than 80 percent of cancer patients present with advanced (stage III or IV) disease [26]. It is estimated that annually, 40,000 Kenyans are diagnosed with cancer and more than 27,000 will die from the disease within one to two years of being diagnosed [27]. Kenyatta National Hospital, the country's largest and only public cancer treatment facility, has only two radiotherapy machines, with more than 1800 patients scheduled for radiotherapy per year [28]. Some private hospitals in Nairobi provide both radiotherapy and chemotherapy, but the cost ranges from USD $1600 to $5000, which is prohibitive given that many Kenyans live on only $1 per day or less. In addition, many Kenyans live in rural and remote areas, and making the long journey to access these services is challenging [27]. The disparity is also obvious when treatment facilities which can be used both for curative and palliative management are considered. Estimates by International Atomic Energy Agency show the disparity between high- and low-income settings, with 11.4 radiotherapy machines per million in North America versus 0.05 machines per million in Central Africa [29]. There are no machines in nearly forty countries, most of which are low-income [29].

The issue is even more pressing for children, with estimates that 98 percent of children in need of palliative or end-of-life care are residing in these countries, where there are almost no pediatric palliative care services available [11]. Lancet Commission reports that every year almost 2.5 million children die with serious health-related suffering, and more than 98 percent of these children are from resource-limited regions. In high-income countries, children account for less than 1 percent of all deaths associated with serious health-related suffering, whereas in low-income countries, children account for more than 30 percent of such deaths. In low-income countries, at least 93 percent of child deaths associated with serious health-related suffering are avoidable [19]. A review of pediatric palliative care services in 2011 found that despite need, 65.6 percent of countries had no known pediatric palliative care activity, with only 5.7 percent having provision reaching mainstream providers, and these were all high-income countries [30]. Although palliative care in LMICs has been improving, children did not always benefit from these developments [31].

Despite these statistics, palliative care is available and partially integrated into the health care system in several countries, most notably Romania, Uganda, and Costa Rica. Romania has shown rapid progress across the last decade in public policy, education, training, and the establishment of palliative care services. The lead institution for palliative care in Romania is the Hospice Casa Sperantei in Brasov, which was established in collaboration with overseas partners and is now a resource center for palliative care development in Eastern Europe, offering training programs for countries in the Balkan region and Commonwealth of Independent States countries [32]. Costa Rica has integrated palliative care into the public health system, achieving a ratio of palliative care services to the general population that is comparable to that in high-income countries [13]. In 2011, Rwanda began to implement a national palliative care policy. The Health Ministry pays Rwandans to manufacture bottles of liquid morphine in local laboratories. The government then sends the morphine to pharmacies and hospitals, and health workers deliver the drug to people's homes [33].

National palliative care guidelines are now available in many African countries. Kenya, Rwanda, South Africa, and Tanzania have integrated palliative care into health care policy. Côte d'Ivoire has a national policy for palliative care developed in the context of the HIV/AIDS epidemic. Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe have standalone national palliative care policies [34]. Botswana and Uganda have also adopted national policies [35,36].

A 2015 report by the Quality of Death Index team demonstrated improvement in palliative care services in some of the lower-income countries, such as Panama (through building palliative care into its primary care services), Mongolia (through rapid growth in hospice facilities and teaching programs), and Uganda (through advances in the availability of opioid medicines). The supply-demand analysis in the same document, based upon the countries' demographic profiles and the burden of diseases for which palliative care is necessary, points out that many other similar countries will have to work hard to meet rising future needs as the incidence of noncommunicable disease increases and their populations grow older. The report shows China to be among the most vulnerable from population aging and the rising incidence of conditions such as cardiovascular disease, which accounted for one-third of all deaths in the country in 2012 [37].

In areas where there are no established or state-supported programs, nongovernmental organizations (NGOs) and/or volunteer community health workers have been successfully utilized to provide some palliative care services. Two examples include:

●Kerala, India – Homecare services are prioritized over institution-based palliative care, and most services, provided by local self-government organization, are rendered free of charge to patients [38].

●Tanzania – A project entitled the Continuum of Care for People Living with HIV/AIDS in Tanzania was initiated in 2006 with support from the United States Agency for International Development. It aims to provide palliative care to patients within the Lutheran health care system in this country.

Common diseases — Palliative care services focus mainly on noncommunicable causes of death, which bring about the great majority of deaths worldwide [39]. Globally, it is estimated that 40 million people are in need of palliative care at any point of time [1]; 39 percent have cardiovascular disease, 34 percent have cancer, 10 percent have chronic respiratory conditions, 6 percent have HIV, and 5 percent have diabetes. Adults in need of palliative care for progressive nonmalignant disease represent the highest proportion of cases for all regions, followed by cancer. One exception to this is in Africa, where people with HIV/AIDS are the largest group of patients in need of palliative care [11].

The ongoing coronavirus disease 2019 (COVID-19) pandemic has introduced additional challenges for palliative care teams [40]. A study of 277 palliative care services in the United Kingdom has shown perceived new challenges in six domains. These included complex decision-making in the face of a new infectious disease, difficulties in maintaining a personalized approach, COVID-19 specific communication difficulties, additional workload and pressure, difficulties sharing information, and atmosphere of fear and uncertainty [41].

An online survey of 488 specialist palliative care services (United Kingdom 277, the rest of Europe 85, the rest of the world 95) showed that palliative care services implemented rapid changes in response to the pandemic-generated new challenges. These responses included streamlining access to services, extending and increasing outreach of services, better use of communication technology, and implementing staff wellbeing innovations [42].

The WHO has identified the most common conditions that require palliative care for adults and children [11]:

●For adults, these include Alzheimer disease and other dementias, cancer, cardiovascular diseases (excluding sudden deaths), cirrhosis of the liver, chronic obstructive pulmonary disease, diabetes, HIV/AIDS, kidney failure, multiple sclerosis, Parkinson disease, rheumatoid arthritis, and drug-resistant tuberculosis.

●For children, these include cancer, cardiovascular diseases, cirrhosis of the liver, congenital anomalies (excluding heart abnormalities), blood and immune disorders, HIV/AIDS, meningitis, kidney diseases, neurologic disorders, and neonatal conditions.

HISTORY AND AVAILABILITY BY GEOGRAPHIC REGION

Europe — Palliative care services were initiated in most of the Western European countries (with the exception of the Netherlands) in the 1980s. The first palliative care service in the Netherlands was established in 1991. Expansion of services has been rapid, with the support of the European Association of Palliative Care (EAPC) in the form of research and innovative reports.

In 2003, the Council of Europe published a set of guidelines that described palliative care as an essential and basic right of patients, especially those who have a limited life expectancy [43]. This document supports palliative care advocacy for Eastern European countries with less developed systems, where growth has been relatively slow because of differences in the local socioeconomic and health care milieus. According to a 2014 review in the EAPC Atlas of Palliative Care in Europe analyzing all 53 countries that make up the European Region of the World Health Organization (WHO), palliative medicine is now a specialty or subspecialty in 14 countries, and the availability of palliative care has been improving in Eastern Europe, particularly in Moldova, Romania, and Poland [44].

The United Kingdom has consistently been identified as among the highest performing countries in palliative care. According to the EAPC Atlas of Palliative Care in Europe, the United Kingdom had 308 palliative care hospital support teams, 189 inpatient hospices, and 272 day hospice/day care centers. In addition, it leads pediatric palliative care services with 46 pediatric home palliative care support teams, 241 pediatric palliative care units in tertiary hospitals, 42 pediatric inpatient hospices, and 31 pediatric day care services in 2013. The EAPC Atlas of Palliative Care in Europe also shows 15 countries that offer official palliative medicine certification programs: Czech Republic, Finland, France, Georgia, Germany, Ireland, Israel, Italy, Latvia, Malta, Norway, Poland, Romania, Slovakia, and the United Kingdom [44].

There have been developments in pediatric palliative care, particularly, perinatal palliative care. The first International Neonatal Palliative and End of Life Care Symposium was held in 2010 in London. The British Association for Perinatal Medicine brought out their guidance in August 2010 and the General Medical Council in the United Kingdom later published their new guidance on treatment and care towards the end of life, making a special mention of neonates and infants [45-47].

Central and South America — The Latin American Association of Palliative Care Atlas of Palliative Care in Latin America, published in 2012, gives an analysis of the situation in 19 countries within the region of Central and South America [48] and notes that there are fewer than 1000 palliative care services in the region, with homecare teams providing much of them. Argentina and Chile together account for almost half of the total number of services in Latin America, although the best coverage is reported to be in Costa Rica. Costa Rica has integrated palliative care into the public health system, achieving a ratio of palliative care services to the general population that is comparable to that in high-income countries [13]. In Mexico, a national legislation was enacted in 2009 and followed up in 2014. The national law mandates nationwide access to palliative care across all health care settings and within patients' homes. The legislation also mandates all health care personnel to have adequate training in palliative care and for health care institutions to "guarantee the training and continued education of human resources in health care in the area of palliative care and attention to patients in the terminal phase" [49]. As such, a wide variability in coverage exists across countries. Four Central/South American countries (Colombia, Mexico, Argentina, and Chile) offer palliative care accreditation as a medical specialty and/or subspecialty, and six offer a course or diploma in palliative care. Graduate-level education is also available in other regions, including Paraguay, Cuba, and Uruguay. Paraguay offers postgraduate courses but no accreditation. In Cuba and Uruguay, all medical schools offer palliative care, either as a separate course program or as part of other course programs.

Australia — With support from the federal government, palliative care services in Australia have steadily increasing since 1980. Notably, in 2000, palliative medicine was recognized as a specialty within Australia [50], where the world's first professorship in palliative care was also established. Australia came out with the 5^th edition of National Standards, which describes the systems and enablers necessary to deliver high-quality clinical care as well as the expectations with respect to quality management, quality improvement, and benchmarking, self-assessed by tools and resources available under Palliative Care Australia's National Standards Assessment Programme [51].

Asia — Development of palliative care across Asia is very heterogeneous. Hong Kong and Singapore have achieved advanced levels of palliative care integrations, but many countries in the region have limited to no palliative care services [13]. The first hospices in the continent were established in Korea (1965) and Japan (1973) [52], followed by in India in 1986. Development of palliative care in India has been slow except for the southern state of Kerala, which experimented with community-based palliative care services and now accounts for the majority of palliative care services in the country [38]. In China, many hospices and departments of palliative care have been started in urban areas. More than 30 Ning Yang Yuan (Peace and Care Hospices, funded by the Li Ka Shing Foundation) provide palliative care in the community. It has been reported that there are more than 200 privately funded hospices and palliative care units in China and more than 10,000 professionals working in the field of palliative care. Palliative care training is not part of the curriculum for medical students, but certification training is required for all clinicians who treat patients with cancer [53]. Two Asian regions, Mongolia and Kerala (in India), show two unique success stories in palliative care demonstrating different approaches:

●Mongolia began palliative care development in 2000 with the creation of the Mongolian Palliative Care Society and the Palliative Care Department. Advocacy activities involving international players made sure that palliative care is included in Mongolia's health law, health insurance law, social welfare law, National Cancer Control Program, and the National Program for Non-Communicable Diseases. Mongolia has also approved palliative care standards and pain management guidelines. Palliative care education is included in the undergraduate and postgraduate curriculum in all medical universities. In 2014, a pediatric palliative care inpatient unit was established with five beds. Essential drugs for palliative care, including opioids, have been available since 2015 [54].

●Palliative care in Kerala started in 1993 as a Civil Society Organization-run service linked to a government medical college. Support in the form of donations and voluntary work was solicited from the local community. Seven years later, a program named Neighborhood Network in Palliative Care was launched to expand the program and encourage better participation from the community. Community groups formed were encouraged to take up the responsibility of developing palliative care initiatives in the locality. Around 50 such local palliative care initiatives came up in the next eight years. By that time, local governments in Kerala also started taking interest in the program. Palliative home care units were established soon by all the more than 1000 local government institutions in the region, guided by a pain and palliative care policy by the state government of Kerala. Two decades after the initial attempts at deeper involvement of the community, Kerala now has more than 1000 palliative care units linked to local government institutions and more than 400 units run by local community groups. More than 300 of these Civil Society projects developed spontaneously over the last decade, "uninvited" and not as part of the original system. New community groups in palliative care continue to come up regularly. All the 1400 local initiatives are organizationally and financially independent of each other [38,55].

The first faith-based palliative care organization in Thailand opened in 1992 at the Wat Phrabat Nampu temple in Lop Buri province. Care was provided by Buddhist monks and volunteers [56]. Northeast Thailand later developed a network of nurse-led palliative home care teams within the public health care system. A Palliative Care Training Centre in a university hospital trains and organizes the nurse-led home care teams that are then based at the provincial hospitals, district hospitals, and primary care units (community health centers [CHCs]). After a successful pilot project, the program was extended throughout Northeast Thailand encompassing 20 provincial hospitals, 300 district hospitals, and more than 3000 CHCs. The home care teams are supervised by palliative care units that now exist in 95 percent of the district hospitals. The palliative care units in district hospitals link with the palliative care units at the provincial hospital and with the CHCs [57].

In Malaysia, palliative care has made significant progress since its introduction in 1991. Approximately 26 nongovernmental organizations (NGOs) and 68 government hospitals provide palliative care services nationwide. Government palliative care has a focus on in-patient care, whereas NGOs largely focus on nurse-led community services. Despite distinctions between NGO and the government palliative care services, they mostly operate symbiotically. Specifically, many NGOs rely on government health care for essential prescriptions and to provide in-patient facilities, whilst government health care benefits from the home care service, which helps alleviate overcrowding in hospitals. The emphasis of Malaysian palliative care is on cancer, with many NGOs specifically focusing on cancer patients, and those accepting patients with other life-limiting conditions reporting over 90 percent of patient cases with cancer [58,59].

Middle East and North Africa — Palliative care is still in the developmental phase throughout many countries in the Middle East, including Algeria, Bahrain, Djibouti, Egypt, Iraq, Jordan, Kuwait, Lebanon, Libya, Mauritania, Morocco, Oman, Palestine, Qatar, Saudi Arabia, Somalia, Sudan, Syria, Tunisia, United Arab Emirates, and Western Sahara [60].

The number of registered palliative care services in Turkey has shown a rapid increase in recent years following government initiatives at policy level. The Pallia-Turk project by the Turkish Ministry of Health launched in 2010 was focused on the opioid availability and implementation of a community-based palliative care model [61]. Directives for palliative care services implementation procedures and principles were published by the Ministry of Health in 2014 and revised in 2015 [62,63].

In Israel, a rising awareness of the specialty of palliative care has occurred since the late 1970s [64]. Nurse specialists became the key health care professionals in palliative care in Israel in 2009 upon a decision by the Israeli Ministry of Health. This decision was based upon a severe shortage of clinicians in Israel, and it lead to augmenting the authority and responsibilities of nurses [65].

In Jordan, the largest palliative care unit was launched in King Hussein Cancer Center (KHCC) in 2006 which continues to function [66]. The unit provides inpatient, outpatient, and home care palliative care services through its interdisciplinary team to thousands of patients at KHCC. Al-Malath foundation, an NGO, has been offering limited services in the capital Amman even before KHCC. Supportive care services are also provided at a Basheer public hospital governed by the Ministry of Health [64].

Specialist palliative care services are not available for patients in Palestine. There is a registered NGO providing palliative care services in Bethlehem focusing on educating clinicians, nurses, patients and their families on the basics. The organization has two qualified palliative care workers (a nurse and a social worker) who also provide consultation for cancer patients and their families through its team along with occasional consultations from an oncologist who received six months of training in palliative care. The NGO has also started a program with the Ministry of Health and Augusta Victoria Hospital at Ibn-Sina College for Health Sciences to train undergraduate nursing students on palliative care [67].

Sub-Saharan Africa — The first hospice in Africa was established in Uganda in 1993, but development of services in the continent has been slow. A few models of palliative care are available in South Africa, Kenya, Zimbabwe, and Uganda [68-71]. Kenya has 44 palliative care services, and palliative care is available in 20 of Kenya's 47 counties. In 2016, 11 level-five (county referral) government and provincial hospitals across the country had palliative care units, serving 30,000 patients with more than 220 trained health professionals [34].

HIV has played a crucial role in palliative care development in Africa through international funding, contributing to genuine need on the continent. South Africa, particularly, benefited greatly from this aid, with tremendous growth in palliative care services in the country. As HIV/AIDS transitioned to a chronic condition, it became evident that palliative care was overly dependent on HIV-specific funding with insufficient replacement funds [72].

Thirteen countries in Africa now include palliative care as part of their national cancer control plans [73]. Six countries (Malawi, Mozambique, Rwanda, Swaziland, Tanzania, and Zimbabwe) have standalone palliative care policies [74]. Uganda and Botswana have completed national palliative care policy documents, which are awaiting approval [75]. However, development is not optimal even in these countries. For example, in Uganda, which is considered to be one of the countries with relatively well-developed services, palliative care is still not universally available to patients and families who need it. Palliative care in the country receives very little governmental funding, with only 69 out of 112 districts providing palliative care through both government and NGO facilities [76].

SPECIFIC ISSUES — Multiple issues contribute to the highly variable and frequently nonexistent palliative care services across the world. Some of these issues are discussed below.

Perceptions of end of life — Strong taboos against talking about death and dying exist across the world and mitigate against the establishment and acceptance of end-of-life care services [77-79]. In some cultures, talking openly about death and dying is considered disrespectful and can lead to despair and a perception that the process of dying has accelerated. Many people, both in the West and East, find death too distressing to contemplate, and it is, therefore, ignored or avoided. Such attitudes among professionals and the general public can cause delayed or no referrals to palliative care, even in places where good services exist [77]. For example, in some parts of China, even if palliative care services are available, discussion of death in any context is actively avoided. Indeed, data from the World Health Organization (WHO) rank China last in engagement regarding public discussions about end-of-life care [11].

A report from Iran states that sociocultural differences particular to Iranian society make clinicians unable discuss death or to tell the truth to their patients [80].

Internationally, due to its large population, Asia accounts for at least one-half of all patients with critical illness, mechanical ventilation, and intensive care unit (ICU) deaths [81]. A study among intensive care physicians in Asian countries showed that while death in the ICU is common, less than one-half of the physicians (40.6 percent of those from high-income countries and 46.3 percent from low-and middle-income countries (LMICs) felt comfortable in having end-of-life discussions with patients' families [82].

Pain medication

Availability — Availability of analgesics (both opioids and nonopioids) is inadequate in many low- and middle-income countries (LMICs). It is estimated that 15 percent of the world's population consumes 94 percent of the world's opioids [83], with the majority of patients with access living in high-income countries. Others estimate that 80 percent of the world's population lacks access to morphine [84], a medicine that has been included in the WHO's essential medicines list since 1977 [85]. More than 5 billion people (83 percent of the world's population) live in countries with low to nonexistent access, 250 million (4 percent) have moderate access, and only 460 million (7 percent) have adequate access to opioids for pain relief [20]. The Lancet Commission observed that only 0.03 percent of total morphine-equivalent opioids distributed worldwide in a year (average of 2010 to 2013 was 298.5 metric tons) were supplied to LMICs where 83 percent of the total population live [6].

According to a Human Rights Watch report on the global state of pain, Sub-Saharan Africa has the lowest global consumption of opioid analgesics [86]. Morphine consumption stands at 0.391 mg per capita, far below the world average of 6.24 mg per capita. Other opioid analgesics, such as oxycodone, fentanyl, and methadone, are unavailable or also in short supply [86].

Availability of opioids in Africa is low. Many countries have legal restrictions on opioid use and prescription, such as in Côte d'Ivoire, Egypt, Nigeria, and Rwanda. Some countries, such as Tanzania and Ethiopia, require specific licenses to prescribe or administer morphine. However, many African countries have managed to repeal unduly restrictive legal laws and regulations on prescribers of morphine. These include Sierra Leone, South Africa, Uganda, and Zambia. South Africa has the highest consumption of morphine, and Tunisia had the highest consumption of morphine per capita amongst non-anglophone African countries. Morphine powder is constituted nationally in Kenya, Sierra Leone, and Uganda [34].

The morphine equivalents (ME) consumption for the WHO South-East Asia Region in 2015 was around 1.7 mg per capita; this was one-hundredth of the average ME consumption in the WHO European Region of around 170 mg ME per capita [87].

Chile and Argentina have the highest opioid consumption in Latin America and the Caribbean, though consumption even in those two countries is considered moderate when compared with international levels [87].

Barriers — Global access to pain relief was evaluated by the European Society of Medical Oncology's (ESMO's) Palliative Care Working Group, which found a lack of availability of essential opioids; seven opioids are included in the WHO's essential medicines list (codeine, oral morphine immediate release, oral morphine controlled release, injectable morphine, oxycodone immediate release, oral methadone, and transdermal fentanyl). However, fewer than three were routinely available in institutions and pharmacies [88]. Barriers to access included:

●Outdated health care policies – Globally, over 80 percent of countries had strict policies governing access to pain medications, which served as substantial barriers to patients. These included restrictions on types of hospitals and even wards where opioids could be administered, the dose and time interval allowable by a single prescription, and the type of health care provider that could prescribe these agents. Emphasis on prevention of diversion and illicit use of narcotics dating back to the 1961 United Nations Single Convention on Narcotic Drugs [89] unfortunately resulted in such rules and regulations, making it practically impossible to prescribe and dispense opioids for medical use and ultimately denying access to opioids to as many as five billion people in pain [90,91].

●Administrative barriers – Even where these agents are available, the process by which patients procure opioids can be a significant barrier, including the paperwork required to prescribe, the cost of agents (often not subsidized by the government), and limits on the dose that can be prescribed.

●Lack of provider education and empowerment – There is a lack of education on safe prescription of pain medications worldwide, which may lead to discomfort among providers on how to safely prescribe these drugs.

Cost of medicines is also an issue. Findings of Opioid Price Watch indicate that in regards to its international reference price (USD $0.47 per dose), the median price of a morphine oral solid immediate-release tablet (10 mg) is 5.8 times higher in LMICs than in high-income countries. Monthly treatment costs of morphine oral solid immediate release, measured in the number of days' wages of the lowest-paid worker, varies greatly (Philippines 29 days, India 21 days, and Guatemala 8 days) [92].

In the poorest 10 percent of the world's countries, a patient with pain who dies from AIDS or cancer has access to, on average, 200 mg of oral morphine (or equivalents); in the richest 10 percent of countries, the average morphine consumption per death in pain from AIDS or cancer is 99,000 mg [93].

Despite these barriers, some countries have made great strides to provide access to medically appropriate opioids for its citizens. As an example, in Colombia, all 32 states have been mandated to have at least one place where opioids are guaranteed to be in stock [94]. Because of this, the utilization of opioids in Colombia improved dramatically. In Ethiopia, a government-owned company formulates and distributes oral morphine solution in various concentrations, and a national pain management guideline has been developed. In Jamaica, guidelines have been developed for the safe transportation of opioids from distributors to health care facilities [95].

On the other hand, the lack of progress in improving access to opioid medications in most LMICs was underscored in a statistical analysis of use and barriers to access of opioid analgesics between 2001 to 2003 and 2011 to 2013 [96]. Worldwide, use of opioid analgesics had increased over this 10-year period, but the increase in consumption was limited to North America, Western and Central Europe, and Oceania (including Australia, New Zealand, and the South Pacific Islands). Countries in other regions, including Africa, Asia, Central America, the Caribbean, South America, and Eastern and Southeastern Europe, showed no substantial increase in use. Their analysis of impediments to use echoed many of the same issues raised by the ESMO working group and included absence of training and awareness in medical professionals, fear of dependence, restricted financial resources, issues in sourcing or importing opioids, cultural attitudes, fear of diversion, international trade controls, and onerous regulation. However, fear of causing dependence and onerous regulations or legislative restrictions as impediments to opioid access were less frequently mentioned in a United Nations global analysis of access to opioids in 2015 as compared with 1995 (fear of dependence 32 versus 64 percent, onerous regulation 18 versus 53 percent) [97,98].

Professional education — Although more than 120 professional training programs are available globally in palliative care, the vast majority of clinicians still have little or no knowledge of the principles and practices of palliative care [99]. Well-developed specialist training programs for doctors and nurses are available in countries such as the United Kingdom, Ireland, New Zealand, Australia, Taiwan, and Canada. Poland, Romania, Slovakia, France, and Germany also have certification programs in palliative care. However, most of the LMICs do not have any intermediate- or long-term courses/training programs for health care professionals. Latin America is an exception in that one-third of the countries in this region have a postgraduate course or diploma in palliative care. In Africa, postgraduate diplomas in palliative care are available in Kenya, South Africa, Uganda, and Tanzania. Of these countries, Uganda, Kenya, and Tanzania have postgraduate diplomas also for pediatric palliative care, and planning is underway to develop postgraduate courses in Botswana, Namibia, and Rwanda. Uganda and South Africa recognize palliative care as an examinable academic subject [100]. Two Asian countries (India and Bangladesh) have started postgraduate degree courses in palliative medicine recognized by their national medical councils [101-103].

The first training program in LMICs for professionals interested in initiating and running palliative care programs was initiated in India as a partnership venture between four agencies, three of which are from LMICs and the fourth one of which is from a high-income country [104].

There are limited numbers of specialist training programs available in LMICs for pediatric palliative care, although examples include pediatric palliative training for doctors in Argentina, the masters/postgraduate diploma in palliative care (pediatric) provided through the University of Cape Town, and the diploma in pediatric palliative care from Mildmay Uganda [100].

Status of do not resuscitate documents — Do not resuscitate (DNR) documents are widely in use in hospitals and are accepted in the majority of high-income countries. In Taiwan, for example, the Natural Death Act was passed in 2000, which allows patients over the age of 20 with terminal diseases to express in writing their wish to discontinue medical treatment, and it does not prosecute doctors who allow such deaths [105]. It was observed that the rate of DNR orders in terminally ill patients gradually increased in the 10 years (2001 to 2011) following the act [106]. By contrast, in most low-income countries, DNR documents and other types of advance directives do not have valid legal status and are not part of standard medical practice. (See "Advance care planning and advance directives".)

Euthanasia and medical aid in dying — Active euthanasia and medical aid in dying (MAID) are illegal in most countries. However, several Western countries have legalized one or both of the practices. The current legal status of voluntary active euthanasia (VAE) and MAID in the United States and other countries is discussed elsewhere. (See "Medical aid in dying: Ethical and legal issues".)

Public debates and media attention on issues related to euthanasia or MAID can be catalysts for policymakers to improve palliative care services. For example, in Australia, euthanasia was legalized in the Northern Territory by the Rights of the Terminally Ill Act, passed in 1995, but was voided by amendment to the Self-Government Act governing the Northern Territory later in 1996. However, this was subsequently followed by an increase in national funding for palliative care [107].

In Japan, medical voluntary euthanasia was approved by a high court as early as 1962, but instances are extremely rare, seemingly because of complicated taboos on suicide, dying, and death in the country [108].

On the other hand, VAE or MAID is not legal in any of the LMICs other than Colombia. Occasional discussions/debates in the media around these issues occur (eg, media attention on euthanasia as linked to the Aruna Shanbaug case and a Supreme Court verdict on living will in India) [109-111], but they rarely bring greater attention to palliative care, likely because of a very low baseline level of awareness about palliative care.

Most palliative care associations in the world oppose assisted dying and are often vocal in their opposition. In some instances, however, there is evidence of divided opinions; for example, within the Association of Palliative Medicine in the United Kingdom [112].

The European Association of Palliative Care (EAPC) has developed a "white paper" on euthanasia and MAID with the aim of "providing a viewpoint from the palliative care perspective" [113].

ECONOMICS — Estimates of the cost of care in the last year of life are consistently high. Access to palliative care remains inconsistent, even in high-income countries, with the number of providers varying from 5 to 680 per million population [114].

Lack of government funding is an obvious barrier to the availability of palliative care services in many countries, especially those with low income. One exception is Kerala, India, where more than 60 percent of the funding for palliative care comes from the local government. A few international organizations, such as the Global Fund, the President's Emergency Plan for AIDS Relief (PEPFAR), and the United Kingdom's Department for International Development, are active in supporting palliative care efforts in low-income countries. PEPFAR, for example, has earmarked 15 percent of its funding for palliative care. Global Fund funding for palliative care has focused largely on HIV and tuberculosis programs. Donations from the United Kingdom and other counties help fund programs in countries such as Romania, Serbia, and Moldova.

Who pays for the services at the point of care delivery also differs from country to country. In Switzerland, the Netherlands, Ireland, and the United States, patients are required to pay (part of) the service fees directly to the service provider ("out-of-pocket" payments). Optional supplementary insurance is available to cover additional service costs in the Netherlands and Ireland, but it comes at a higher insurance premium.

A survey among pediatric oncologists from different countries revealed that in low-income countries, pediatric oncology is usually practiced in government-supported, resource-strained oncology hospitals. As many as 24 percent of clinicians in low-income countries reported out-of-pocket payment for cancer treatment, palliative care, or comfort care medications, whereas most children in high-income countries receive government-funded care at freestanding pediatric institutions [115].

In Germany, patients are required to make out-of-pocket payments for their stay in hospice inpatient units of up to EUR €90 per day when statutory and insurance funding combined are insufficient. Social funding is available for people who are unable to afford this fee [116].

Examples of different funding for palliative care internationally within high-income countries include:

●Hospice and palliative care in Canada receive approximately 50 percent of their funding from charitable donations. Unfortunately, Canadian families often shoulder a large fiscal burden, estimated to be 25 percent of the total costs to provide palliative care [117].

●Charitable hospices for adults in England receive approximately 30 percent of their funds from the government or the National Health Service.

●In Singapore, palliative care was originally launched as a nongovernmental initiative funded by charitable donations. Since 1996, homecare services started receiving government funding. In addition, the Central Provident Fund, a compulsory national savings scheme, has been supporting inpatient hospice and home palliative care.

●In Taiwan, hospice coverage is an extension of national health insurance, with providers reimbursed through a fixed daily rate.

The situation in low-income countries varies. Some examples are given below:

●Active government support is available for palliative care programs in countries like Uganda, Romania, and the South Indian state of Kerala.

●Palliative care in Africa is dependent on external donors and funds to a large extent [118]. One exception, as mentioned above, is Uganda, where the government has dedicated part of its national budget specifically to palliative care development [119].

●In Cambodia, the concept of palliative care is still relatively new. Hence, funding is not available to support programs, and as such, much of this work is being done by international relief groups, such as Douleurs Sans Frontières [120].

SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)

SUMMARY

●Global recognition – Palliative care is well recognized in the United States, Europe, and several other counties. Global recognition beyond these areas has been increasing. (See 'Global recognition' above.)

●Unequal access to palliative care – Most palliative care services are offered in high-income countries, although the greatest need is in low-income countries. (See 'Unequal availability' above.)

•High-income countries generally have greater integration of palliative care as part of their health care systems. In addition, many high-income countries provide near-universal access to pediatric palliative care. (See 'High-income countries' above.)

•Although there is a critical need for palliative care services in low-income countries, palliative care is available and partially integrated into the health care system in a few places, most notably Romania and Uganda. In many other countries where there are no established or state-supported programs, nongovernmental organizations (NGOs) and/or volunteer community health workers have been successfully utilized to provide some palliative care services. (See 'Low-income countries' above.)

•The vast majority of children (98 percent) in need of palliative care at the end of life belong to low- and middle-income countries (LMICs).

●Common diseases – Globally, the greatest need for palliative care is related to cardiovascular disease or cancer; one exception to this is in Africa, where people with HIV/AIDS are the largest group of patients in need of palliative care [11]. (See 'Common diseases' above.)

●Specific issues – Several issues affect the delivery of palliative care internationally. (See 'Specific issues' above.)

•Views on death and end of life differ across cultures and countries, which may serve as a barrier to palliative care services. (See 'Perceptions of end of life' above.)

•Access to pain medications is unequally distributed, with the majority of the world's population having inadequate access. (See 'Pain medication' above.)

•Most LMICs lack adequate palliative care training programs for health care professionals. (See 'Professional education' above.)

•There is considerable global variation in the legal status of advance directives and in the practices of euthanasia and medical aid in dying (MAID).

•Lack of government funding is an obvious barrier to the availability of palliative care services in many countries, especially those with low income. However, local governments and patchy support from international organizations help fund programs in a few places. (See 'Economics' above.)