Facts for Families9th July 2026
Where suitable and appropriate, plans should be in place to support this. It is also important that family members are aware of these plans, know where they are kept, and understand what they mean. We have easy read booklets for the people we support: My Plan Before I Die and My Plan After I Die, to help address some of those difficult subjects far in advance of a person’s death.
What a “good death” means
A good death means different things to different people. It may include:
- Being treated with dignity and kindness
- Feeling safe and comfortable
- Being supported by people who know them well
- Having pain and distress managed properly
- Having their wishes respected
- Having reasonable adjustments for communication and sensory needs
Choices about care and where death may happen
Where possible, people should be supported to share their preferences about:
- Being cared for at home
- Being cared for in hospital
- Being cared for in a hospice or other setting
These wishes should be written down and shared with:
- Family members, when the person wishes for this
- GPs and health professionals as approopriate
- Dimensions staff involved in their support
Preferences may change and should be reviewed when needed.
People we support should be given the opportunity to make a legal Last Will and Testament. The responsibility might fall to their support team to suggest and facilitate this if the individual meets the capacity to do so.
Writing wishes down
Where suitable, people may have plans that explain what matters to them at the end of life. These may include:
- What helps them feel calm or distressed
- How they communicate pain or discomfort
- Who they want to be involved
- Important routines, objects, music, or beliefs
Plans may be written in different ways, including easy-read formats. We have an Easy Read document, “Before I Die“, which teams will support your loved one to complete so they can make their wishes known.
These conversations are not about predicting when someone will die. They are about understanding what matters to the person so that they can be supported in the best possible way throughout their life, including if they become very unwell in the future.
For some people, including those with learning disabilities, autism, or complex health needs, it can be helpful to think about these things earlier in life. This helps ensure that their wishes, comfort, communication needs, and important relationships are known and respected by those who support them.
Having these discussions early means that care can be more consistent, familiar, and reassuring if health needs change over time. It is part of good person-centred planning, not a sign that something will happen soon.
Family members, friends and others who know the person well can play an important role in supporting these conversations, particularly for people with more profound learning disabilities or complex communication needs. They can help identify what is important to the person and support communication. However, wherever possible, the person’s own wishes should guide the process, and some people may choose not to involve family members. These choices should be respected.
What is most important is that the person’s wishes are clear, recorded in a way that works for them, and shared with those involved in their care.
Colleagues should know where these plans are stored so they can be accessed quickly and used to guide care when needed.
Funeral and after-death wishes
Some people choose to share their wishes about what happens after they die. This might include:
- Burial or cremation preferences
- Music, readings, or personal choices
- Religious, cultural, or personal wishes
These wishes should be written down and families should know where they are recorded.
Do Not Attempt Cardiopulmonary Resuscitation (DNACPR)
A DNACPR form tells professionals not to attempt CPR if the person’s heart or breathing stops.
Important points for families to know:
- A DNACPR is not about stopping care
- Comfort, dignity, and pain relief must always continue
- Learning disability or autism alone is never a reason for a DNACPR
- Families should be involved in discussions where appropriate
If a DNACPR is in place, families should know:
- Why the decision was made
- Where the form is kept
- Who to speak to if they have questions
- That the decision should be made in the person’s best interests, with appropriate consultation. This usually includes involving the person themselves (where possible) and/or those who know them best, and there should be clear documentation showing how this was considered
It is also important that staff and families can be confident that the correct DNACPR paperwork is in place and has been completed following the appropriate process.
Keeping families informed
Dimensions aims to ensure that, where appropriate:
- Families are aware of any end-of-life plans
- Families know who to contact with questions or concerns
- Plans are shared with relevant professionals
Reviewing plans
Plans should be reviewed:
- If the person’s health changes
- If the person’s wishes change
- At least once a year where plans are in place
Planning ahead helps ensure that people supported by Dimensions are treated with dignity, compassion, and respect at the end of their life, and that families are informed and supported, where this is what the person wishes.
Useful Resources
- The Victoria and Stuart Project have some useful information: https://www.victoriaandstuart.com/end-of-life-care-planning-guide-1
- Macmillian have some helpful information for end of life planning which you can find here: https://www.macmillan.org.uk/cancer-information-and-support/get-help/translations-and-other-formats/easy-read-cancer-information
- Books Beyond Words: https://www.booksbeyondwords.co.uk/bookshop/p/am-i-going-to-die
- Palliative Care for People with Learning Disabilities: PCPLD Network – Palliative Care of People with Learning Disabilities Network