Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews

SAGE Palliative Medicine & Chronic Care

This episode features Baby Foo (School of Psychology, The University of Sydney, Sydney, NSW, Australia) and Dr Michele Wiese (School of Psychology, Western Sydney University, Penrith, NSW, Australia). With advancing age and the experience of life-limiting illness, people with intellectual disability need equitable access to effective palliative care. Palliative care staff experience unique challenges when caring for people with intellectual disability, such as communication barriers, which can make it more difficult to address their needs. People with intellectual disability are not routinely included in conversations about their dying and death in primary and residential care settings, unless they instigate these discussions. This study highlights that specialist palliative care staff do not consistently talk with people with intellectual disability about their dying and death. Conversations about dying and death are influenced by the (1) perceived capacity of the person with intellectual disability, (2) experience and expertise of palliative care staff, (3) the relationship between palliative care staff and dying person, and (4) values of palliative care staff and other caregivers. Urgent policy and practice changes are required to address misinformation and assumptions about people with intellectual disability, including the development of guidelines regarding communication about dying and death with people with intellectual disability in palliative care. Specialist palliative care services need to prioritise staff training for those working with this patient group, and focus on developing knowledge and skills in communication strategies relevant to people with intellectual disability. Future research should focus on the needs of people with intellectual disability and their caregivers in palliative care across all levels from policy to practice.