Helping the most vulnerable to find a voice - about death

Wednesday, 22 February 2017

"The quietest voice in the conversation about death and dying is often the person who is dying."

That's according to University of Adelaide researcher Dr Jaklin Eliott (School of Public Health), who is embarking on a new research project aimed at finding ways for the most vulnerable people in our community to have a voice among healthcare professionals when it comes to the preparation for their death.

Dr Eliott has recently been awarded more than $379,000 from the National Health and Medical Research Council (NHMRC) for her project, which will focus on Advance Care Planning – planning for care at the end of life.

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

"To provide people at the end of life with choice and dignity in their care, without placing unnecessary burden on the healthcare system, Advance Care Planning has become an increasingly important policy issue. However, fewer than one-in-five doctors know their patients’ preferences as death approaches," she says.

"The various healthcare policies and practices that have been developed to help Australians document their end-of-life preferences are typically designed to suit the majority population, which 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."

Dr Eliott's team will consult with these Australians, including 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.

"We'll identify what should be done to ensure that Advance Care Planning and end-of-life care conversations within these communities are best supported," she says.

"We'll 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."

Dr Eliott says the research team's partnership with community, government, and clinical stakeholders will see rapid translation of research outcomes into policy and clinical practice.

In addition to funding from the NHMRC, an Indigenous PhD student will be funded to work on this project, thanks to support from the University of Adelaide and a top-up scholarship provided by Northern Communities Health Foundation Inc.

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