Irene Tuffrey-Wijne is Associate Professor, Kingston University & St George’s University of London, and Chair of the European Association for Palliative Care (EAPC) Task Force on Intellectual Disabilities. Here, she explains the background to her longer article published in the January/February 2016 issue of the European Journal of Palliative Care.
After several years of hard work, the EAPC Task Force on Intellectual Disabilities has published its White Paper. You can find it here.
To our knowledge, this is the first European-wide guidance on the provision of palliative care for people with intellectual disabilities. We developed 52 items within 13 consensus norms based on the input of 80 experts in 15 European countries. This is how it starts, with norm 1:
- EQUITY OF ACCESS
1a. People with intellectual disabilities should have equity of access to the palliative care services and supports that are available in their country.
Perhaps this is stating the obvious. Shouldn’t everyone have equal access to palliative care services, regardless of who they are? Indeed, if this very first item in Norm 1 is achieved, all the other 51 items in our document are superfluous.
Yet, there is consistent evidence that people with intellectual disabilities do not have equal access. And when they do get referred to palliative care services, they face a whole range of challenges that make it more difficult for palliative care professionals to meet their needs.
To name but a few…
- Problems with communication, understanding, insight into their illness and dying.
- Difficulties with the assessment of pain and other symptoms.
- Issues around mental capacity and involvement in decision-making.
- Sometimes complex or delicate family relationships.
- Complex social situations.
- Multiple co-morbidities.
- Above-average risk of complicated grief.
The White Paper addresses all these issues. The norms are designed to provide guidance for professionals from all backgrounds, carers, managers and policy makers. As part of our work, we asked people to tell us about good practice within their own settings. We received 88 examples from 13 countries; some of these are included in the White Paper, along with pointers to relevant resources.
What struck us was that good practice was often dependent on the dedication of individual practitioners, rather than on policies, systems or guidelines. Sometimes, excellence seemed to be achieved despite the system, rather than because of it. One of the challenges for the future is to find ways to ‘scale up’ good practice and ensure that they are embedded within good services and systems.
The work of the task force has been exciting, and being its chair is a privilege. I think we have all enjoyed the experience of working together, sharing experiences and discovering what is happening in other countries.
This is only just the beginning. If our task force has learned anything, it is how little we know. We don’t know, for starters, what is really happening to people with intellectual disabilities in Europe. Where do they die? Who supports them at the end of life? And importantly: what are the challenges across Europe in achieving the consensus norms set out in the White Paper?
The White Paper may be here, but we haven’t finished yet . . .
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Palliative care for people with intellectual disabilities: The EAPC White Paper in a nutshell’, by Irene Tuffrey-Wijne published in the January/February 2016 issue of the European Journal of Palliative Care (vol. 23.1).
EAPC members and readers of the blog can download this article free of charge from the EAPC website– click here.
If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.
Links and resources
- Download an open access paper in Palliative Medicine.
- EAPC Task Force on Palliative Care for People with Intellectual Disabilities.
- The PCPLD Network (Palliative Care for People with Learning Difficulties).