Mapping Palliative Care Provision for Prisoners in Europe
Prison populations in many countries are rising, in part because of ageing populations, and as a consequence there are increasing numbers of people in prison who are approaching the end of life. In most countries there is little or no research in this area, and even where there is a growing body of research, it is still in its infancy and there remain large gaps in knowledge. In addition, different countries have different policies and approaches to dying in prison; in some places, those approaching the end of life would always be released on compassionate grounds, whilst in others compassionate release is rare. To date there has been no scoping or mapping work undertaken across European countries, so there currently exists no overview of palliative care provision for prisoners in Europe. This Task Force is beginning to address this lack of knowledge by investigating and mapping palliative care provision in different European countries.
Aims and objectives
The Task Force was launched at EAPC Congress in Madrid in May 2017. It has two main aims:
- To undertake scoping work in at least five countries to map the current provision of palliative care for prisoners;
- To develop an international network of professionals interested in palliative care for prisoners from as many European countries as possible, and other countries outside of Europe.
- Manual Luis Capelas, Professor, Universidade Catolica Portuguesa, Lisboa, Portugal.
- Kenneth Chambaere, Professor, End-of-Life Care Research Group, Ghent University and Vrije Universiteit Brussel (VUB), Ghent, Belgium.
- Rachel Kemp, Medical Director & Consultant in Palliative Medicine, Marie Curie Hospice Edinburgh, Scotland.
- Katherine Pettus, Advocacy Officer, IAHPC
- Stacey Panozzo, Research Fellow, St Vincent’s Hospital and the University of Melbourne, Melbourne, Australia.
- Edith Riegler, Intern, United Nations Office on Drugs and Crime, Vienna, Austria.
- Carla Marinho Teves, Research Assistant, Observatorio Portugues dos Cuidados Paliativos, Lisboa, Portugal.
- Catherine Walshe, United Kingdom – EAPC Board link
- Audrey Roulston, Senior Lecturer in Social Work, School of Social Sciences, Education and Social Work, Queen’s University Belfast, Northern Ireland
- Emma Carduff, Research Lead, Marie Curie Hospice in Glasgow, Scotland
Developing a network
The network that started in Madrid with 19 members has continued to develop steadily, and currently consists of over 80 members from 19 countries. A newsletter is produced three times a year and distributed via email to all members on the mailing list. It provides an update on the work of the Task Force, shares links to recently published papers and articles relevant to palliative care for prisoners, and presents examples of good practice.
The first part of the scoping work (Part A Survey ) was undertaken between September 2018 and April 2019 in eight countries: Australia, Belgium, Czech Republic, England & Wales, France, Portugal, Scotland and Slovakia. A paper about this work has been published in BMJ Supportive & Palliative Care (available here: http://spcare.bmj.com/cgi/content/full/bmjspcare-2020-002701), and a full report is available below.
Part B of the mapping work is now underway, although considerable delays have been experienced because of the COVID-19 pandemic. Part B consists of qualitative interviews in individual prisons in selected countries. The protocol for this part of the project has been finalised, and ethical and governance approvals are currently being sought. Data collection and analysis will take place from April 2021 to October 2022, and the project is due to complete in May 2023.
The Steering Committee has identified a number of challenges, including:
- A lack of resources to undertake the scoping work. Members of the Steering Committee are leading this work, but the available time they have is limited without further support and/or funding.
- Difficulty in accessing appropriate networks to facilitate access to prisons in some countries.
- The COVID-19 pandemic.
- The need for ethical and governance approvals in each country/jurisdiction before interviews in individual prisons can be undertaken; this is likely to be a complex and time-consuming process and may restrict the extent of work possible.
The Steering Committee will continue to work to overcome these challenges, but acknowledges that the amount of progress is likely to vary between different countries.
May 2017 (at EAPC in Madrid)
Formal launch of Task Force
Identification of country leads
Development of survey and questionnaire
Collection of descriptive data (Part A)
Analysis of descriptive data
Development of protocol for Part B scoping work
EAPC Task Force: Mapping Palliative Care Provision for Prisoners in Europe Part A Survey report 2019
Applications for ethical and governance approvals
Part B data collection
Part B data analysis
Completion of White Paper and report