Planning end of life care with people who have learning disabilities

The Compassion in Dying team
Death, Dying and Digital
3 min readJun 1, 2022

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Pat (Worcestershire)

Today’s guest post comes from Beth Britton, Consultant for MacIntyre’s Dying to Talk Project who explains how this project is empowering people with learning disabilities to have choice and control over their end of life care.

We all know that planning for the end of our lives is important, and most people would agree that they want the autonomy to make their own plans. For people with learning disabilities though, end of life planning has often been done for them, stripping them of choice and control about where they would wish to die and what they would want their last days and hours to include.

Through MacIntyre’s Dying to Talk Project we are aiming to change this ‘norm’ for people with learning disabilities and open up conversations about death and dying with them. We want to normalise involving people with learning disabilities in creating their end of life plans, and alongside this support their families through this process too, which can often be particularly difficult for parents of adult children with learning disabilities.

Working with people who have learning disabilities

We are involving the people MacIntyre support in different ways. These include through larger, facilitated workshops for people who feel comfortable talking about and planning end of life care amongst their peers, and one-to-one or small group sessions in the homes of individuals who prefer talking about this subject in more private, familiar surroundings.

We are using a range of resources to help us communicate what death and dying is and to talk about different aspects of planning for a person’s end of life. These resources include Grave Talk cards, Books Beyond Words, and many different communication tools including picture cards and Talking Mats.

The documentation we are using with the people we support to record their choices and wishes are MacIntyre’s ‘My plan for before I die’ and ‘My plan for after I die’, both of which are in easy read format, free to download, and accompanied by guidance for staff who are supporting people with a learning disability.

What people with learning disabilities and their support staff are telling us about making end of life plans

Throughout our work with people who have learning disabilities we are aiming to capture their thoughts and feelings about planning their end of life care and support.

These have included:

“I wouldn’t want people to bring me flowers, I could die before they do.”
Celia, Worcestershire

“I would want to choose if I had an operation because I might not pull through.”
Celia, Worcestershire

“I want to be looked after at home if I’m going to die.”
Pat, Worcestershire

Pat (Worcestershire)

We’ve also spoken to MacIntyre staff who are involved with supporting people to make end of life plans.

They have told us:

“I began a conversation with the person I link-work around music that they might want at their funeral. They weren’t as anxious as they had been previously and it ended up being a positive conversation.”
Jan, Frontline Practitioner

“We started to speak to individuals about their wishes, with one lady saying she wanted to die at home, have hand massages, listen to ACDC, and have the smell of her favourite perfume in her room. I documented all of her wishes.” Linda, Frontline Manager

Making choices

Would you like to know more about the Dying to Talk Project?

We are keen to hear from anyone who would like to learn more about the Dying to Talk Project. Please email: health.team@macintyrecharity.org.

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