End of life planning is a rights-based issue.
Adults with learning disabilities are frequently excluded, intentionally or unintentionally, from conversations about their future care, treatment and legacy. As a result, decisions are often made at a time of crisis, without choices and clear documentation of the individual’s wishes.
Accessible, structured end of life planning workshops enable people with learning disabilities to:
- Express their preferences safely and confidently
- Strengthen communication with family and staff
- Reduce anxiety about the future
- Take practical steps such as arranging Powers of Attorney
- Ensure their voice is central in future care decisions
For organisations committed to person-centred practice, this is not optional, we at thriving Connections CIC believe it is essential.
Most third sector organisations supporting people with learning disabilities pride themselves on promoting voice and autonomy. Yet end of life planning is often avoided due to discomfort, delayed until a time of crisis, or discussed with families rather than individuals. This creates risk for the person, their family and your organisation.
If we support individuals to make decisions about housing, employment and daily living, we must also support decisions about:
- Where they wish to be cared for at end of life
- Who they want involved in their care
- How care should be delivered
- What happens after their death
True inclusion includes end of life. This is true person centred care.
We know that when preferences are not discussed early and decisions are made under pressure, personal choices are removed and the individual and their families experience increased distress. There are also increased chances of staff not feeling prepared and documentation being incomplete. Proactive planning reduces emotional and operational risk. Good end of life planning supports compliance and good governance.
From informal discussions, we have learnt that many staff avoid end of life planning conversations not out of neglect, but because they feel unprepared. The structured End of Life Planning workshops delivered by Thriving Connections CIC with people who have learning disabilities provide a safe framework to have sensitive conversations and help create a culture where death is not a taboo topic. This builds organisational resilience, allowing staff to build the confidence to continue having these sensitive conversations in a non threatening way.
From our recent project of delivering End of Life Planning workshops in Birmingham, individuals consistently reported feeling less afraid, feeling heard, feeling secure and importantly more empowered. These are protective factors that strengthen overall wellbeing.What Our Accessible Workshops Provide
Our end of life planning workshops using the ©NoBarriersHere toolkit offer:
- Creative, non-threatening entry points into complex topics
- Easy Read materials and visual tools
- Structured sessions delivered at an appropriate pace
- A safe, facilitated space for reflection
- Clear follow-up documentation to support action
Participants leave not only with ideas, but with confidence and clarity.
A Leadership Decision
End of life planning is not “extra.” It is not solely a health responsibility. It is not something to wait for. It is part of delivering truly person-centred support.
If your organisation is committed to empowerment, autonomy and rights-based practice, accessible end of life planning must sit within your offer.
Next Steps
We work with third sector organisations to deliver creative, accessible end of life planning workshops for adults with learning disabilities.
If you would like to explore how this could be delivered within your service, we would welcome a conversation.
