Objective: The purpose of this study was to assess the extent to which vulnerability was present or heightened as a result of either disability or end-of-life policies, or both, when people with disabilities face end of life.
Method: People with disabilities and policy makers from four Canadian provinces and at the federal level were interviewed or participated in focus groups to identify interactions between disability policies and end-of-life policies. Relevant policy documents in each jurisdiction were also analyzed. Key theme analysis was used on transcripts and policy documents. Fact sheets identifying five key issues were developed and shared in the four provinces with policy makers and people with disabilities.
Results: Examples of heightened vulnerability are evident in discontinuity from formal healthcare providers with knowledge of conditions and impairments, separation from informal care providers and support systems, and lack of coordination with and gaps in disability-related supports. When policies seek to increase the dignity, autonomy, and capacity of all individuals, including those who experience heightened vulnerability, they can mitigate or lessen some of the vulnerability.
Significance of results: Specific policies addressing access to community-based palliative care, coordination between long-standing formal care providers and new care providers, and support and respect for informal care providers, can redress these heightened vulnerabilities. The interactions between disability and end-of-life policies can be used to create inclusive end-of-life policies, resulting in better end-of-life care for all people, including people with disabilities.