Planning for a good life, right to the end

Ms Nicola Mckenzie1, Associate Professor Brigit Mirfin-Veitch2,3, Dr Jenny Conder2,3, Dr Henrietta Trip1

1University Of Otago, Centre for Postgraduate Nursing Studies, Christchurch, New Zealand, 2University of Otago, Centre for Postgraduate Nursing Studies, Dunedin, New Zealand, 3Donald Beasley Institute Inc, Dunedin, New Zealand

Advance care planning (ACP) is a process of thinking and planning for the end of life. People with learning (intellectual) disabilities have traditionally been excluded from this process, having little say over decisions about their lives while unwell, or about their deaths. Previous research found that ACP could be successfully completed by people with learning disabilities, but that access and quality were compromised.

This paper shares findings from a follow-up participatory action research study aiming to improve access to, and quality of, ACP. A co-research group of seven adults with learning disabilities and four disability service managers, worked with family members and healthcare professionals. They reviewed existing processes, and directed the development of a new ACP process and tools (easy read ACP template, training for professionals, and guidebook). They also completed a trial and evaluation of the new process and tools.

Results demonstrated the benefits of training facilitators, supporting people to learn about their choices, and of using an easy-read plan aligned to the standard New Zealand version, which includes recording how decisions were made. This process produced high quality plans that were trusted by healthcare professionals.

The global pandemic exacerbated health and treatment inequities experienced by people with learning disabilities, and highlighted the benefits of planning ahead for serious illness and death. This study offers an easily replicable approach that could be used by many people with learning disabilities to ensure that their wishes are heard and honoured. This is more important now than ever.


Nic is a disability sector contractor, and PhD candidate at the University of Otago. She has previously worked as speech-language therapist, staff educator, and project manager. Nic is interested in participatory research that has meaningful benefit to people with learning disabilities.