Lay summary
On average people with learning (intellectual) disability die 14-19 years younger than New Zealanders without learning disability, often without a life-limiting diagnosis having been made, or with very late diagnosis. Very little is known about the experiences of people with learning disability at the end of life, about their access to palliative care supports and services, about what is important to people with learning disability regarding end-of-life care, and about what health professionals and caregivers need in order to meet their needs. We will interview 24 people to identify gaps and issues related to the provision of end-of-life supports and services with people with learning disability and explore priorities for future research. Interviewees will include people with learning disability, whānau, and palliative care and disability service professionals. In addition, we will review and report on the related literature. Findings will inform a future research grant.