Dying with disability: a disability and palliative care intersectoral partnership framework

Abstract

People with intellectual disabilities have poor end-of-life experiences compared with other community members. Few strategies are in place to ensure they receive end-of-life care tailored to their specific needs. More is known about “what” constitutes quality end-of-life care for people with intellectual disabilities, and the barriers to achieving these outcomes, than “how” to overcome these barriers. The expertise of both the palliative care and disability sectors are needed, at national, state, regional, and local levels, to address the causes that result in poor end-of-life experiences for people with intellectual disabilities, their families, and carers. This study developed an intersectoral disability and palliative care policy and practice partnership framework using a modified Delphi approach to integrate the key findings of two studies that provided guidance on what good end-of-life care looks like for people with intellectual disabilities: the Disability Healthy End of Life Program service model with the European Association of Palliative Care Consensus Norms for Palliative Care of People with Intellectual Disabilities in Europe. The intersectoral framework developed from this study is solution-focused and addresses the challenges of achieving quality practice.

Keywords:

• End-of-life care
• intellectual disability
• palliative care
• dying
• death
• disability services
• partnerships
• learning disabilities

Acknowledgments

The author would like to acknowledge the contribution and support of the Department of Health and Human Services Victoria, Disability Accommodation Services in the North East Metropolitan Area, particularly the leadership of Maree Belleville, Disability Accommodation Services Manager. The contribution made by the Victorian Palliative Care Consortia consultants is greatly appreciated. The continuing support provided to the La Trobe University Palliative Care Unit by the Victorian Department of Health and Human Services is also acknowledged.