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Research to help give vulnerable people a voice about death

A new research project into finding ways to give vulnerable people in our community a voice when it comes to the preparation for their death is underway thanks to a grant worth more than $379,000 from the National Health and Medical Research Council (NHMRC).

"The quietest voice in the conversation about death and dying is often the person who is dying" (Source Shuttertock)

"The quietest voice in the conversation about death and dying is often the person who is dying," says University of Adelaide researcher Dr Jaklin Eliott, who is heading up the team which has been awarded the grant.

As more people want end of life choice and dignity in their care, Advance Care Planning has become an increasingly important policy issue. However, according to Dr Eliot, fewer than one-in-five doctors know their patients’ preferences as death approaches.

"Many Australians continue to die never having had a conversation with their doctors or their family about their approaching death," Dr Eliott says.

She highlights the various healthcare policies and practices been developed to help Australians document their end-of-life preferences are typically designed to suit the majority population; these may not meet the needs of vulnerable Australians.

"Those most vulnerable include people with lower levels of health literacy, with chronic diseases who may be too unwell to discuss their wishes, or are part of cultural groups that value family or community decisions over individual decision-making," she says.

Dr Eliott's team will also consult with people with Alzheimer’s disease, cancer, and chronic airways disease, people from older and newer migrant groups (Italians, Vietnamese, and Bhutanese), and Aboriginal and Torres Strait Islander people.

As well as identifying ways to ensure Advance Care Planning and end-of-life care conversations within these communities are best supported, the team will also examine how the existing South Australian Advance Care Directives legislation is currently interpreted and implemented in hospitals, within vulnerable communities, and by healthcare workers.

“SA Health is facilitating this aspect of the research, with our findings expected to inform future legislation," says Dr Elliot. “The research team's partnership with community, government, and clinical stakeholders will see rapid translation of research outcomes into policy and clinical practice.”

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