Jun 11, 2021
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.