It is important to talk to people with a learning disability who have a serious illness about what they would like to happen if they become more unwell or die.
You should find out:
- how they prefer to communicate
- if they have care needs related to their faith or culture
- what they do and do not like
- if they have any allergies to food or medication
- what health conditions they have
- what medication they're taking
- where they'd like to be cared for at the end of life
- who they'd like to be with them at the end of life
- if they have any pets and if they'd like them to be close by at the end of life
- if they have anyone that supports with key areas of their care including decision making or appointments, such as a Lasting Power of Attorney or an advocate
You could also find out if the person has any sensory sensitivities. They might respond in unexpected ways – for example they may scream when they hear a noise, or experience light touch as painful. It can help to know this when helping discuss their plans for care.
Resources to support these conversations
The Victoria and Stuart Project have 'When I'm ill' cards divided into 5 categories : About me, Where, Treatment, Needing help, Before I die.
They also have 'My funeral' cards which can help to discuss and record wishes for funerals, how they would like to be remembered, practical and legal arrangements.
In the video below 3 people with learning disability look at pictures that help them talk about the care and support they would like when they are ill and coming to the end of their life.