A Victorian parliamentary inquiry has heard few people with intellectual and developmental disabilities are supported to make choices about how or where they die.
In a submission to the inquiry into end of life choices at the Bendigo Town Hall on Wednesday, La Trobe University professor of rural and regional allied health Teresa Iacono said this was part of a broader trend in which people with IDD often had limited choices about their everyday lives.
Professor Iacono told the story of a rural Victorian man who ended up in aged care after his family struggled to find suitable support.
She said the man experienced loneliness and distress in the facility, despite his family’s best efforts to be with him as much as possible and the goodwill of staff.
“At the age of 51, he developed pneumonia, and despite being very ill and distressed, aged care delayed calling an ambulance,” she said.
“This man ended up in hospital, with his mother and sister being told, shortly after his admission that he was dying. He lived a couple more days, but the family were not offered any palliative care support. Whether his death was premature is difficult to know.”
Professor Iacono said disability support staff may be distrustful of aged care and palliative care due to a perception that staff lacked an understanding of their clients’ particular needs, citing a study into dementia in people with IDD.
“We suspect their death related to having delayed a transition to late dementia care until the point at which staff could no longer provide the level of nursing care required (as they are not medically trained),” she said.
“Hence, their clients’ transitions had been triggered by crisis, rather than careful planning that would afford them and their families the opportunity to participate in advance care planning and end of life choices through a process of supported decision making.”
Professor Iacono recommended building an understanding of supported decision making for people with IDD to guide families and staff to include decisions about end of life care.