Mapping Levels of Palliative Care Development: A Global Update

Data on palliative care development were initially collected from the following sources: published articles in peer reviewed and professional journals, books and monographs, palliative care directories, palliative care and related websites, data provided by the EAPC Task Force for the Development of Palliative Care in Europe, IOELC reviews and databases, as well as gray literature and conference presentations (Fig. 1). We explored questions of palliative care coverage, public awareness, education and training, opioid availability, and reimbursement. We also focused on service types and settings, the impact of palliative care on policy, links with academic institutions, and the relationship between palliative care services and other mainstream service providers. Critical points included whether there was evidence of government support, the implementation of strategic plans, published research, and palliative care elements in medical as well as nursing curricula and accredited courses.

In-country “key experts” in palliative care were particularly important sources of data for the study. Palliative care “champions” with extensive knowledge of both national and international development were identified in a variety of ways: within the sources cited above, from their participation in the previous study in 2006, from information provided by 66 national palliative care associations, and from international palliative care sources (International Association for Hospice and Palliative Care, Help the Hospices, and Worldwide Palliative Care Alliance). In countries where a champion was identified, they were requested to 1) provide information on the number and different types of palliative care services in their country, and 2) indicate which category within the new typology most accurately reflected the current status of palliative care in their country. Eighty-five palliative care champions were identified, and they provided information about the status of palliative care in their respective countries. Where no palliative care champion could be identified, regional palliative care associations (e.g., Asia Pacific Hospice Palliative Care Network and African Palliative Care Association) acted as “proxies” and provided valuable information on behalf of a further 77 countries.

In countries where a palliative care champion could not be identified and where the information from a regional palliative care association was not available, data collected from the initial sources identified above (particularly from the previous study in 2006) were revisited to determine to which category the country in question should be allocated; knowledge gained by the authors while working on other hospice and palliative care-related projects (e.g., work undertaken with the Open Society Foundation IPCI) also was used to achieve this objective. In total, the status of palliative care development in 72 countries was calculated in this manner. In cases where categorization of a particular country was unclear (approximately 14 in total), the authors undertook a consultative process with each other. The initial categorization was made by T. L. based on the available evidence; S. C. and D. C. then conferred on cases that were particularly difficult to categorize, using their extensive and detailed knowledge of many of the countries in the study, in some cases based on visits made to those countries in recent years. The country in question was then allocated to one of the following categories based on its perceived level of palliative care development:

To gain a broader view of the development of a country, data also were collected regarding human development. The U.N. Human Development Index (HDI) measures a country's achievements in the three aspects of longevity, knowledge, and standard of living, which highlight the development in human rather than economic terms (The HDI was created to re-emphasize that people and their lives should be the ultimate criteria for assessing the development of a country, not economic growth). Figures relating to population size were taken from the World Health Organization web-site (192 countries at that time) and supplemented by estimated figures from the World Fact Book (42 countries), which are supplied by the U.S. Census Bureau and are based on statistics from population censuses and vital statistics registration systems.

In most regions of the world, a strong association exists between palliative care and human development. Thirty (67%) of the 45 countries in Groups 4a/4b (preliminary/advanced palliative care integration) have a very high level of development as measured by the U.N. HDI, and five countries (11%) have a high level of human development. Only six countries (13%) in Groups 4a/4b have a low level of human development, yet this is a significant increase from the figure for 2006, which suggested that only one (3%) country from Group 4 was in the low development group. All six countries from Groups 4a/4b with low levels of human development are from Africa, suggesting that, in contrast to other regions of the world, the level of palliative care development in this particular area may not be concomitant with the overall levels of human development. In Group 1 (no known palliative care activity), only two (3%) of the 75 countries have a very high level of human development and seven (9%) countries have a high level of human development. By contrast, 20 (27%) countries in Group 1 have a low level of human development, and 33 (44%) countries in this group have no HDI at all (Table 2).

Countries in Groups 4a/4b have multiple services; within this group, the ratio of services to population does not exceed 1:8.5 million (China). Countries in Groups 3a/3b frequently have a single service provision and a ratio of services to population that extends to 1:90 million (Pakistan) (Table 3).

A regional analysis of palliative care development produces striking variations in the levels achieved by neighboring countries and in each country's ratio of services to population. In North America, both Canada and the U.S. are in Group 4b, whereas no palliative care activity could be identified in Greenland. In Latin America, Chile, Costa Rica, Puerto Rico, and Uruguay are in Group 4a, whereas several other countries in the region provide either a single or a relatively small number of palliative care services (Table 4); several Caribbean Islands also offer a single palliative care service.

In Western Europe, only small countries, such as Andorra, Monaco, and the Holy See (Vatican), or U.K. regions such as the Falkland Islands are in Groups 1 or 2; other U.K. regions such as Guernsey and the Isle of Man are in Group 3a. Greece is also in Group 3a, with Cyprus, Malta, and Portugal in 3b; the remainder of Western European countries are in Groups 4a/4b (Table 5).

In Central and Eastern Europe/Commonwealth of Independent States (CEE/CIS), countries such as Turkmenistan and Uzbekistan have no known palliative care capacity; this is in stark contrast to countries such as Poland and Romania that are in Group 4b (Table 6).

In Western Asia, only Israel is in Group 4a (preliminary integration); a number of other countries in the region offer limited palliative care provision and are in Groups 3a/3b (Table 7).

In Africa, no palliative care service could be identified in 28 of the continent's countries; this contrasts with the categorization of Uganda in Group 4b and several other countries in the region that are categorized in Group 4a (Table 8). A good example of progress in Africa is provided by Cote' D'Ivoire, which moved from Group 2 in 2006 to Group 3b in 2011. There are now 26 hospice-palliative care services in Cote D'Ivoire (22 government hospitals/health facilities, three mission hospitals, and one private hospital). The African Palliative Care Association (APCA) and other partners have worked in Cote D'Ivoire to develop palliative care; a palliative care infrastructure has been developed and palliative care services provided. Despite remaining in the same group as 2006 (Group 3), Nigeria is reported as “making progress” in the development of palliative care. The seven palliative care services in Nigeria include two private hospices and five government-owned, tertiary health, hospital palliative care services. There are five formally qualified physicians and four formally qualified nurse specialists practicing palliative care in the country. “Much progress” is reported from Kenya, where 44 services currently exist, including the recent integration of palliative care into ten government hospitals. There are several medical institutions delivering educational courses on palliative care, and the discipline is gradually being integrated into the curricula of medical, nursing, pharmacy, and dental schools across the country (e.g., the Nursing Council of Kenya). In addition, the National Cancer Control Strategy contains explicit reference to palliative care. Some African countries with only a single palliative care service are beginning to develop education and training initiatives; for example, the organization “Pallia Familli,” which provides home-based palliative care in Kinshasa, has organized several palliative care training and education initiatives in conjunction with the Congolese Federation for Palliative Care. Even countries such as Senegal that remain categorized as having “no known palliative care capacity,” are reported as displaying “some aspects of capacity-building.” The impact of unpredictable and volatile political situations on the development of palliative care in the region is evident in countries such as Zimbabwe, which has moved erratically between different groups since the initial process of categorization commenced.

In the Asia Pacific and Oceania regions, Australia, Hong Kong, and Singapore have achieved advanced palliative care integration (Group 4b), although many other countries in the region offer either a limited number of palliative care services or no services at all (Table 9). It should also be noted that approximately one-fifth of the world's population is found in China, and one-sixth in India.

In 2006, there was no known palliative care activity in 78 of the world's 234 countries (33%); by 2011, this figure had decreased by three countries (−1%) to 75. The number of countries that were demonstrating capacity-building potential in 2006 was 41 (18%); by 2011, this number had decreased by a total of 18 countries to 23 (−8%). Countries with localized hospice-palliative care provision in 2006 totaled 80 (34%); in 2011, the combined number of countries in Groups 3a and 3b totaled 91 (39%)—an increase of 11 countries (+5%). Finally, the division of Group 4 indicates that although 25 countries (10.7%) are now approaching integration with mainstream health service providers, only 20 countries (8.5%) have actually achieved this. In 2011, the total number of countries in Group 4 was 45 (19%), as opposed to 35 (15%) in 2006—an increase of 10 countries (+4%) (Table 10, Table 11, Table 12).

This study has certain limitations. As with the 2006 study, despite our best efforts in attempting to ascertain the status of palliative care development, there remained an absence of data for some countries. Also, the way in which services are counted proved problematic. Two systems operate in tandem. Services in five of the six continents tend to be counted by provider, irrespective of the number of services. In Europe, they are usually counted by type (e.g., home care, day care, inpatient units, or hospital teams). Although this allows a degree of comparability for services in the countries of Europe as well as within and across the other five continents, it also inhibits any comparable worldwide analysis. In addition, listing services by provider is by no means foolproof and could be a source of bias, as a country with few but large-scale provider organizations would show a lower ratio of services per capita compared with a country having several small providers. Differences in the way in which services are counted may be an artifact of the ways in which relevant studies have worked and the procedures of the “counting” organizations. We attempted to address these issues by listing the number of providers and services in the same category of data under the heading “services/providers,” and attempting to glean clarification from key persons and local palliative care experts.

A major problem was that of standardization and definition in how services are characterized. Terms such as “hospice,” “inpatient unit,” or “mobile team” do not have a universal currency, and globally, there were difficulties in comparing “like with like.” We also note the diversity of provision and the different “histories” of palliative care in specific jurisdictions and acknowledge the absence of agreed upon standards and quality measures globally. In addition, most data regarding palliative care development originate from palliative care activists in each respective country, and this is acknowledged as a potential source of bias or inaccuracy.

Respondents were selected from data provided by a variety of sources, for example, the 2006 study, the EAPC Task Force for the Development of Palliative Care in Europe, IOELC reviews and databases, and information from work that we had undertaken on other related projects. Respondents in 2011 were asked to grade the level of palliative care development in their respective country. A limitation was that respondents often experienced difficulty in choosing between the divided Groups 3a or 3b and 4a or 4b. Some respondents suggested that their country “did not fit into any category,” that their country was “somewhere on the border” between two categories, or that “strengths and limitations” existed within each subcategory. This situation was reflected in several countries in the CEE/CIS, where national palliative care associations had been formed but because of financial problems and political changes that resulted in inconsistent public health policy, the progress of palliative care remained “very slow.” Respondents from the Americas/Caribbean also experienced some difficulty in determining between the newly divided categories, for example, the respondent from Panama stressed that her country was “not 3a at all, but cannot be categorized as 3b either.” In the Asia Pacific and Oceania region, the respondent from Nepal experienced some difficulty in choosing between Groups 3a and 3b, whereas the respondent from Australia found differentiating between Groups 4a and 4b somewhat problematic. Several Western European countries (e.g., Austria, Denmark, The Netherlands, and Spain) also had difficulty in categorizing themselves in either Group 4a or Group 4b, suggesting that they often “scored differently for the different items” and, therefore, were “somewhere in between.” In the African region, the respondent from South Africa proposed another subcategory within Group 4 to further refine the typology.