The close of 2019 sees the publication of the latest world map of palliative care development. Drawing on data from 198 countries in 2017, the full paper is available on open access and can be found here. Despite the many challenges in its production, and the views of some detractors in the field, I believe the work is still the most robust overview of the global palliative care situation and one which has enormous value for activists, policy makers, funders, researchers and palliative care providers. That belief is reinforced by the encouraging amount of media attention around the paper in recent days.
But it all began over 15 years ago, when Michael Wright and I completed a demanding overview of the state of palliative care in Africa. Faced with a plethora of data on more than 40 countries we were perplexed with how to make sense of it. The breakthrough moment came when we realised that each country could be aligned with a small number of simple development categories, based on the information we had obtained. When this mapping exercise was published and immediately met with enthusiastic responses, we decided to take things further and apply the approach to every country in the world. The plan was hubristic, but compelling.
For the first ‘world map’, data about palliative care development from 2006 were collected from published articles in peer-reviewed and professional journals, books and monographs, palliative care directories and related websites, relevant reviews and databases, grey literature and conference presentations. These were then synthesised in order to allocate each country to one of four categories of development. Expert opinion was also used as a substitute for documentary sources where these were not available to inform the classification.
The methods were weak, but nevertheless allowed a first foray into research of this scope and scale. The four categories were: (1) No identified hospice-palliative care activity (2) Capacity building activity but no service (3) Localized palliative care provision (4) Palliative care activities approach integration with mainstream service providers.
The second world map involved a more systematic approach to the identification of in-country experts or ‘champions’ who were asked to give an opinion on the level of development of palliative care in their country in 2011, based on a now refined six category classification: (1) No known hospice-palliative care activity (2) Capacity-building activity (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 4b) Countries where hospice-palliative care services are at a stage of advanced integration into mainstream service provision.
Published in the Journal of Pain and Symptom Management in 2011, it was among the top three papers most downloaded by readers in the following year. Most significantly it provided the scaffolding for the Global Atlas of Palliative Care at the End of Life and this was used in turn to support the World Health Assembly Resolution on Palliative Care of 2014.
Special funding from the Wellcome Trust has allowed the protocol and methods for the third iteration of the world map of palliative care to be developed and implemented in detail. We build on the earlier work – but go significantly beyond it. In a major departure from the earlier studies, the third world map is based primarily on an online survey of in-country experts, in which the questionnaire they were asked to complete was constructed to measure levels of development against 10 indicators drawn from the emerging literature. Where these data could not be obtained or were incomplete, they were enhanced by systematic searches of the published and grey literature for the countries in question.
Even more so than in the previous versions, the new study has been a collaborative effort. It was my pleasure to lead a multi-disciplinary team that combined Nicole Baur and David Clelland at the University of Glasgow End of Life Studies Group, with Carlos Centeno, Eduardo Garralda and Jesus Lopez-Fidalgo at the ATLANTES Global Observatory of Palliative Care, University of Navarra, along with Stephen Connor of the Worldwide Hospice Palliative Care Alliance. I thank them all, along with Amy McCreadie (UoG) and Danny van Steijn (UoN), who provided additional technical support.
The work we have undertaken is the only known attempt to classify the level of palliative care for each country of the world into one of six development categories. We show how patterns in the classification have been changing over time and also map the proportions of the global population that are currently in each category.
Policy makers, activists and third party funders involved in palliative care are acutely aware of the limited evidence that exists about global palliative care development. The World Health Assembly has endorsed the need for all countries to develop national strategies for palliative care provision, but our analysis of 198 countries in 2017 casts some doubt on the effectiveness of recent global strategies. It provides powerful evidence for a renewed global focus on palliative care development and implementation, building on the infrastructure we have identified using the 10 indicators. It should also strengthen discussion on whether there should be common or multiple futures for palliative care development at the local level, something my team has elaborated here.
In 87 of the world’s countries (44%) Palliative Care development is highly localised & lacks sufficient integration with the wider health and social care system to achieve high coverage. These 87 countries represent 53% of the global population. By contrast only 14 % of the global population lives in countries with the highest levels of palliative care development.
Please read the full study and share it with your colleagues, associates and any ‘fellow traveller’ concerned with the slow and unequal development of palliative care in the world. It leaves no room for complacency.