Advance care planning
Increasing choice and control at the end of life
What is advance care planning?
Advance care planning is the process of thinking and talking about our wishes for the end-of-life. Having an advance care plan can help us to live the way the way we want to and to have choice and control over what happens when we are sick or dying. Advance care planning often helps people to feel less worried or anxious.
Designing a better way
The usual approach to advance care planning can be hard for people with learning disabilities to take part in. Family and whānau and professionals sometimes worry that it will upset people or that they won’t cope with talking about dying. This means that many people with learning disabilities are excluded from making their own decisions at the end of their lives.
To help improve this, Nic worked on a research project with a group of co-researchers with learning disabilities and disability service managers. This work was supported by the IHC Foundation and Te Tāhū Hauora, the Health Quality and Safety Commission. Together the research group found out what needed to change and designed a better way of doing advance care planning. They tested it and made sure that it worked well, and as a result achieved some excellent results.
During the research a set of resources was developed to help make advance care planning easier for people with learning disabilities. You can download these below.
Resources
My plan for a good life, right to the end
An easy-read plan template, called ‘My plan for a good life, right to the end’. This has the same content as the standard version that is used in Aotearoa, but has been adapted to suit people’s needs.
Guidebook for Supporters
A guidebook to explain what to do when supporting someone to make their own plan.
Advance Care Planning Policy Development – Guidance for Disability Service Providers
A policy guide to help disability service providers develop their own policies.
A training workshop for guides (supporters)
Training helps guides know what to do, and to feel confident when supporting people to make their plans. Please contact us to find out about options.
Other Resources
For more information about advance care planning, the following websites are recommended:
Tō Tatou Reo, Advance Care Planning in Aotearoa New Zealand
Palliative Care for People with Learning Disabilities Network