Dr David Oliver, Consultant in Palliative Medicine at Wisdom Hospice, Rochester, and Honorary Reader at University of Kent, UK; Board member of the European Association for Palliative Care (EAPC) and a member of the EAPC Task Force on Palliative Care for People with Intellectual Disabilities.
Draft EAPC Norms for Palliative Care for People with Intellectual Disability were presented in a round table session at the Fourth International Association for the Scientific Study of Intellectual Disability Europe Congress, held in Vienna, Austria, on 14-17 July. The norms aim to provide a basis of looking at the care offered to people with intellectual disability (ID). They focus on ensuring that people with ID are able to access palliative care and that services are aware of their particular needs; they emphasise the need for clear communication, and that people with ID should be included in the decisions about their care, and in advance care plans as their health deteriorates. An EAPC task force has been working on the norms over the past year, chaired by Irene Tuffrey-Wijne.
This major conference provides an opportunity to present and debate the newest advances in research on intellectual disability from around the globe and it offered a real opportunity to share our draft norms more widely. The first plenary speaker, Dr Marianne Shultz, a Human Rights lawyer, developed the conference theme, ‘Pathways to Inclusion’. She spoke of the need for the “chronically well” population, which probably comprises 85%, to ensure that there is equal access for all – and especially the 15% of “disabled” – everyone should be empowered to make their own decisions about their lives, including mistakes!
The next stage for the norms will be the completion of the final draft and publication on the EAPC website, and then in both ID and palliative care journals during the coming months. We hope this will lead to greater discussion within both palliative care and intellectual disability services so that there will improved opportunities for all, including those with ID, to receive palliative care. Palliative care should take up this challenge to be open to all, and work in collaboration with ID services and carers to improve the quality of life, and death, of people with ID.
- Fourth International Association for the Scientific Study of Intellectual Disability Europe Congress.
Selected presentations from the 8th EAPC World Research Congress now online…
Even if you weren’t able to attend the congress held in Lleida, Spain, in June 2014, you can now download some of the presentations and other information relating to the congress. Click here to view.