For those who seek to advocate for the development of palliative care as an aspect of Universal Health Coverage, having access to good global data is important. There is much interest in trying to understand how and to what extent palliative care is developing in each of the countries of the world. The World Health Assembly Resolution of 2014, calling on all governments to integrate palliative care into their health care plans and policies, makes this information even more relevant, as we seek to measure the impact of the Resolution and the progress being made in different contexts.
In the past decade, a key source of information about palliative care development have been the ‘world map’ studies of all 234 countries recognised by the United Nations. The first of these [1] was based on data for 2006. It was an ambitious attempt at categorising hospice-palliative care development in each country into one of four categories ranging from ‘no known activity’ to ‘approaching integration’ with mainstream service providers. It met with a favourable response and was repeated in 2011, with two subcategories added to render the ranking more robust [2].
In 2011, 136 of the world’s 234 UN recognised 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. But advanced integration of palliative care had still only been achieved in 20 countries of the world (8.5%).
The second world map also attracted significant interest. It was one of the three most downloaded papers in the Journal of Pain and Symptom Management in 2015, and has over 200 citations listed on Google Scholar. It has been used to guide third party investment in palliative care in specific countries, to highlight low development in certain regions, and to populate the Global Atlas of Palliative Care at the End of Life.
We are now set to look again at how the ‘world map’ of palliative care is looking, based on data for 2017. This third study is being funded by the Wellcome Trust as part of our project on Global Interventions at the End of Life. We are conducting the study in partnership with the Stephen Connor at the Worldwide Hospice and Palliative Care Alliance, along with Professor Carlos Centeno and colleagues of the Atlantes research team at the University of Navarra.
The extra resources we have for the study this time have enabled us to refine our method and respond to some of the comments that have been made about the previous two maps over the years.
For this latest study, we will utilise and refine the previous approach by surveying key informants in all 234 UN recognised countries using an online questionnaire containing a revised set of indicators for each category of development within the world map. In this way we hope to gain a more nuanced understanding of the changes in palliative care development over time and to create a valuable tool for advocacy, helping organisations to assess the progress of palliative care nationally and internationally.
Since the last study, there has also been an increased focus on palliative care provision for children. Many countries do not yet have a distinct organisational entity for children’s palliative care. However, dedicated services for children, specialised education and training and advocacy activities exist in several countries and at the international level mark the emerging landscape of children’s palliative care. This demands the creation of a separate focus to capture their growth within the overall development of palliative care for each country. For the 2017 update, therefore, we will collect data on the level of development of children’s palliative care, collaborating closely with the International Children’s Palliative Care Network in order to gather data and validate findings.
Data collection is now getting underway. The new map will be presented at the meeting of the UN General Assembly for Non-communicable Diseases in September 2018. It will also form a key part of the second edition of the Global Atlas of Palliative care which is envisaged to be published in 2018. We will update on progress and look forward to hearing from palliative care activists from around the world as we make direct approaches to people who can help us in each of the 234 countries participating in our study.
[1] Wright, Michael, Wood, Justin, Lynch, Thomas (2008): Mapping levels of palliative care development: a global view. Journal of Pain and Symptom Management 35:5, 469-485.
[2] Lynch, Thomas, Connor, Stephen, Clark, David (2013): Mapping levels of palliative care development: a global update. Journal of Pain and Symptom Management 35:6, 1094-1106.
Photograph ‘World map on hands‘ by Ed Gregory