When you reach the final months/weeks/days of life, it is important that you get the treatment, care and support that is right for you. That involves decision-making. Most of us will want to be involved in making decisions that affect our lives. What if you have an intellectual disability (known as “learning disability” in the UK)? Would you want to be involved, and if so, how can that be achieved?
In this webinar, we will hear the opinions of people with intellectual disabilities about being involved in end-of-life decisions. We will also hear from research teams in the Netherlands and Australia about their recent work.
• Exploring end of life care and decision making support for people with profound intellectual and multiple disability: An overview of the research around this neglected area. Presented by Dr Jo Watson (Course Director of the Post Graduate program in Disability and Inclusion at Deakin University, Australia). Dr Hille Vos (Netherland Institute for Health Services Research, Netherlands) worked with Dr Watson in 2019 and recently completed a PhD in advance care planning in palliative care for people with intellectual disability. She will be available for Q&A.
• Developing a tool for shared decision making with people with intellectual disabilities in the palliative phase: a Dutch study aimed at adapting an existing tool for shared decision-making and making it suitable for people with intellectual disabilities in the palliative phase. We will hear about the “In-Dialogue” conversation aid which was developed together with people with intellectual disabilities, staff and relatives. Presented by Hanna Noorlandt (researcher, Erasmus Medical Centre) and Freek Felet (co-researcher with intellectual disabilities). Prof Michael Echteld (Project Lead, Professor of End-of-Life care, Avans University, Netherlands) will join for Q&A.
This webinar is useful for anyone who is interested in getting end-of-life decision making right for people with intellectual disabilities. That includes, for example: professionals and clinicians working with people with intellectual disabilities, or with patients at the end of life; service managers; support staff; family carers; and people with intellectual disabilities (we recommend that they have support in watching the webinar).