How To Help Someone With Learning Disabilities Plan Their End Of Life Care & Funeral

It’s important for all of us to know - and plan - what we want for our end of life care and funeral. This includes people with learning disabilities.

A lot of people with learning disabilities may feel as though they do not have the autonomy to make decisions regarding their own end of life plans. In fact, they may have very clear ideas and wishes for how they would like their funeral or end of life care plans to look and feel. You just have to chat to them about it!

We’ll be outlining how to document their wishes while respecting their autonomy and helping them feel empowered and involved in these important decisions. We’ll also be mentioning some helpful resources to get you started.

If you have someone in your life who has learning disabilities, please keep reading to learn how you can support them in planning their end of life wishes.

Please note: We will also be making a clear distinction between end of life plans and funeral plans in this article. Ideally, everyone should have two separate plan documents: one for their end of life care plan and one for their funeral plan.

These are the key takeaways we’ll be outlining:

• People with learning disabilities have the right to choose from all end of life options available to them
• There are several easy read resources written specially for people with learning disabilities available
• Funeral directors will be able to offer you advice about supporting someone with learning disabilities
• The wants and needs of people with learning disabilities could change over time
• You may have to update their end of life care and funeral documents as their needs and wants change over time
• Asking specific questions may be more helpful than asking general ones
• Learn and record what matters most to the person you’re supporting during their end of life

1. Understand that their feelings and wants may change

Before you start the discussion and documentation process, try to keep in mind that the person you’re supporting may change their mind about what they want over time. You can let them know that that’s okay, and that you can update their plan documents at any time in the future.

2. Their needs will change

During your discussion, you can also explain to them that their medical needs may change as their end of life approaches, and that this is a natural thing that everyone experiences. For example, they may initially want to remain at home during their final days, but if they require more nursing care, it may be more comfortable to move into a well-equipped hospice.

Again, you can make sure the person you’re supporting knows that they have the choice to change their minds at any time and that their end of life care documents can be updated.

3. Start off with an informal chat

You can start off the documentation process with an informal chat with the person you’re supporting. Keep a notebook and pen on hand to take notes during this time.

If you’re discussing funeral plans, you could start off by asking them about the kind of music they like, or what their favourite flowers are and if they’d like those flowers at their funeral. You can then go on to ask them more detailed questions like who they would like to be at their funeral, and what type of burial or cremation they would prefer.
 

4. Give them all the options

People with learning difficulties have the right to choose from all the options available to them about the kind of end of life care and/or funeral and burial they would like to have. When discussing the options with them, remember to tell them about every option available to them in the UK.

• For end of life care this could include: hospice, at-home hospice, palliative care at hospital, or assisted living facilities.
• For funeral options this could include: religious, non-religious, humanist, living funeral, non-traditional.
• For burial options this could include: traditional burial, traditional cremation, water cremation, eco/green funerals.

5. Ask your funeral director for advice

Funeral directors have years of experience in planning and organising funerals for many different kinds of people and families. They understand the needs that may come up when someone dies or is nearing the end of life like nobody else does. They will be able to help guide you in how to discuss end of life and funeral plans with your friend or family member with learning disabilities. They may even have easy read resources that you can use, or point you in the right direction. Learn how to choose the right funeral director.

6. Easy-read resources

You can request some easy-read end of life planning booklets from a disability services centre in your area. These booklets include easy-to-understand information about palliative care, hospices, and what to expect during this time. The booklets have been written with people with learning difficulties in mind, and may include illustrations and information presented in small easily digestible chunks.

Macintyre’s Dying to Talk Project have a variety of easy-read resources available to help you out.

7. Talking about death can be difficult with a person with learning disabilities

Talking about death and dying is difficult for most of us, and for a person with learning difficulties it can be hard too. Your friend or family member may have fears or anxieties about their own death, just like anybody else. Use simple language and stay away from euphemisms like “He has gone to a better place” as this can be confusing and misleading. Be sure to tell them the truth and remain factual when discussing death and dying. Here’s a guide on how to talk about death and dying: https://www.thefarewellguide.co.uk/talking-about-death---how-to-get-started

Marie Curie UK has some great tips about talking to someone with learning disabilities about death and dying here

8. You may have to repeat things

Keep in mind that as some of the topics you’ll be talking about can be difficult to understand, you may have to repeat some things. After you have finished documenting the wishes of the person you’re supporting, you can read it back to them to make sure they confirm the details.

9. Ask what they want their final days to be like

Irene Tuffrey-Wijne, an expert in palliative care for people with intellectual disabilities, suggests that we ask “How do you want to live?” rather than “How do you want to die?” to the people we are supporting. Asking this question ensures that you understand the needs of your friend or loved one during their final days, you understand what matters to them, and you’re committed to making sure their final days are free from pain and stress. It may also be easier for someone with learning difficulties to describe what they would like their final days to be like, and thus easier to plan the practical things like where they should receive treatment.

10. Ask really specific questions

Irene Tuffrey-Wijne also recommends that you ask very specific questions to the person you are supporting. So, instead of asking “What do you want for your funeral?” you could ask “What colour flowers would you like?” or “Would you like there to be a sermon by a priest?”

When it comes to questions about their end of life care, you could ask “If you had a day to spend however you like, who would you like to spend it with?” Another question could be: “If one day you become really ill and can’t take care of yourself, would you like a nurse to support you at home, or would you prefer going to hospital?”

11. Record and keep the end of life care and funeral plan documents in a safe place

Make sure that you have recorded the wishes of the person you’re supporting either as a document, or in a digital vault like the one offered in The Farewell Guide free funeral planner tool. The documents should be in a secure place that people can access in the event of the person’s death.

12. Ask what matters most to them

The most important takeaway when recording the wishes of the person you’re supporting should be what matters most to them at the end of their life. For some people, it may be spending their final moments with their family. For others, it may be that they don’t want to be a burden on their loved ones. Some people may want to be in a well-equipped hospital where they feel safe and cared for, while others may want to remain in the comfort of their own home. 

During the process of documenting the end-of-life wishes of the person you’re supporting, remember that people with learning difficulties have the right to choose the kind of end-of-life care and funeral that they really want. Ask questions with the aim to learn what matters most to them, and remain patient and understanding during the process.

Remember, you can always reach out to The Farewell Guide team or your local funeral director for assistance, resources and advice.