• Baby Foo, Michele Wiese, Bernadette Curryer, Roger J Stancliffe, Nathan J Wilson, and Josephine M Clayton.
• School of Psychology, The University of Sydney, Sydney, NSW, Australia.
• Palliat Med. 2021 Apr 1; 35 (4): 738-749.

BackgroundThe cognitive and communication challenges experienced by people with intellectual disability present difficulties for health professionals, particularly in the face of illness and dying.AimTo explore the experiences of specialist palliative care staff in talking with people with intellectual disability about their dying and death, and factors that influence these conversations.DesignAn inductive thematic analysis was conducted on data from a larger qualitative semi-structured interview study.Setting/ParticipantsTwenty palliative care staff from health services across Australia were interviewed. Participants were employed in multidisciplinary specialist palliative care teams and had provided palliative care to dying persons with intellectual disability.ResultsSpecialist palliative care staff did not consistently talk with people with intellectual disability about their dying and death. Conversations were influenced by (a) the perceived capacity of the person with intellectual disability, (b) experience and expertise of palliative care staff, (c) the relationship between palliative care staff and dying person and (d) values of palliative care staff and other caregivers (namely family members and paid carers).ConclusionsSpecialist palliative care staff experience difficulties in talking with people with intellectual disability about their dying. Development of communication guidelines, resources and training for palliative care teams are urgently required to improve palliative care for this patient group. A more comprehensive research agenda on the needs of people with intellectual disability and their caregivers in palliative care is needed, with a particular focus on strategies to effectively communicate about dying and death.

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