The challenges and triumphs of developing a survey on palliative care for people with intellectual disabilities around the world


In a special series, EAPC task forces and reference groups that work on behalf of vulnerable communities explain what they are doing to enable equity in access to palliative care. Today’s Guest Writer is Irene Tuffrey-Wijne, Co-Chair of the European Association for Palliative Care (EAPC) Reference Group on Intellectual Disabilities.

Professor Irene Tuffrey-Wijne

If you had a patient or a relative/friend with intellectual disabilities (ID), what would be your main concern? Which areas of palliative care provision would be most difficult to get right? Symptom control? Truth-telling? Involving families and (nominated) next-of-kin? Working well with other services? Making sure that staff are trained and feel confident?

Meeting the needs of people with ID when they reach the end of life – and in bereavement – is difficult at the best of times. We know this from previous research, including the work of our EAPC Reference Group on Intellectual Disabilities that led to a white paper (2015). It included 13 norms for good practice across a range of areas. Those were aspirational norms, agreed with experts on countries across Europe. (EAPC Members can login to the EAPC website and download the white paper from here). 

That’s all well and good, but how easy or difficult is it for professionals and services in different parts of the world to meet those needs? Our EAPC Reference Group had been pondering this for a couple of years. Then the pandemic hit. Now the questions became even more urgent. This was no longer the best of times, but the worst of times. Dying was everywhere. We heard stories of people with intellectual disabilities falling through the net, but also stories of extraordinary care in difficult circumstances. How had Covid-19 affected the care of people with intellectual disabilities at the end of their life?

‘Palliative & End-of-life Care for People with Intellectual Disabilities & Covid-19: an international survey’ presented at EAPC 17th World Congress 2021. (View here if you registered for the congress).

There we were, 15 researchers from 10 countries in isolation, discovering that Zoom is as good (if not better) than meeting in-person at the occasional conference. We developed an online survey for health and social care professionals, with questions linked to the 13 norms. We asked whether they were able to meet each norm ALWAYS, NEVER or somewhere in-between, and whether the pandemic had made a difference to this. We also asked for examples or stories.

The survey was answered (either partially or fully) by more than 1,000 people, mostly professionals in health and social care services. They came from 20 countries, mostly in Northern Europe but also in Asia, Canada and Australia.

Around 250 respondents had supported someone with ID who had died during the pandemic. We were surprised to find that most of these (around two thirds) didn’t think Covid had made a difference or didn’t know. Perhaps that shows that the challenges transcend this difficult time of the pandemic.

We are still analysing the data but here are some headline results.

  • MOST likely to go well: Access to hospital when needed.
  • LEAST likely to go well: Involving the person in decisions; working together with other services.

Experiences varied widely, and getting good care seemed to be a bit of a postcode lottery in many countries.

“The specialized palliative care team was top! They always come when we call and the support was perfect!” Norway

“Lack of knowledge and experience in caring for this population is a barrier in providing patient focused care.” Canada

Our survey was by no means perfect, but it shows us some important pointers for further research. Working across national borders has been a pleasure. We found that doing an international survey of this nature is entirely possible, and we should do more. We should really include the views of families and people with ID themselves, for example.

Links and resources

Next week on the EAPC blog, our guest writers are Dr Mary Turner and Dr Aline Chassagne, Co-Chairs of the EAPC Task Force on Mapping Palliative Care for Prisoners in Europe.

This entry was posted in ADVOCACY & POLICY, EAPC ACTIVITIES, EAPC Task Forces/Reference Groups, Intellectual disabilities, Minority Communities, World Hospice & Palliative Care Day. Bookmark the permalink.

1 Response to The challenges and triumphs of developing a survey on palliative care for people with intellectual disabilities around the world

  1. Luisella Magnani says:

    I thank You so much, so much for Your Email, on this Day. I thank You so much for having written the link to the reading of the Book of Abstracts of Your 17th Congress. I have just written an email to Professor Irene Tuffrey- Wijne. As a member of UNESCO Chair for Global Health and Education, my studies and researches on palliative care are growing up more and more. My Best Regards to You, Luisella Magnani

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