Death by itself is a social event with a medical component. It is not a medical event with a social component, WA Australian of the Year nominee Professor Samar Aoun says.
In November, Professor Samar Aoun was the Western Australia state recipient of the Australian of the Year Award for 2023. She is now a nominee for the national Award, which will be presented in next week on Wednesday 25 January in Canberra.
Aoun is the Perron Institute Research Chair in Palliative Care at the University of Western Australia and advocates for a person-centred approach to end-of-life-care.
Aoun told Cosmos “The bottom line is having formal services, like palliative care, work with informal networks because that’s the only way to get palliative care to spread across the whole community.”
“The number of us dying in the next 25 years is going to double, so who’s going to look after us? You can’t have palliative care services in every Australian suburb and that’s not the answer anyway, even if we had the money.
“To get much better health care, much better quality of life, and much better quality of death, we need to have the community involved – they need to know that this is their responsibility.”
In 2018 Aoun co-founded the South West Compassionate Communities Network in WA and leads the Compassionate Connectors Program, which involves connecting families back into their communities where they have sustained long-term care and support.
She also volunteers as the director of the Motor Neurone Disease (MND) Australia Board, is president of the MND Association of WA and is a board member of Palliative Care WA.
Coming from a public health background, Aoun began research in palliative care in 2004, but noticed early on that it isn’t available to everyone, everywhere.
“It’s about holistic care, it’s not just about clinical care.”
“It’s about psychosocial, spiritual, existential support, bereavement support for the carers afterwards, family carer support during the caregiving journey.
“There was a lot missing from that wonderful, wonderful definition of palliative care.”
Aoun says that people who are dying only spend about 5% of their time with a health professional –whether a doctor, nurse, or with allied health. The other 95% of their time is spent with their, spouse, family, friends, neighbours, pets, and the community.
But, sadly, many spend the end of their life alone.
According to Aoun, someone with a life-limiting illness like MND or dementia, are not benefiting from palliative care to the fullest extent and can become isolated because of the stigma and taboo of their impending death.
This is why she became involved in the Compassionate Communities approach to care, a call for the community at large to be more engaged with looking after someone who is caring, dying, or grieving.
They found that 80% of the families referred to the Compassionate Connectors Program from the health service were home alone, so involvement in the Program improved their social connectedness and had an enormous impact on physical and mental wellbeing.
Aoun says they’ve also found that the Program reduced hospital admissions, and if people were admitted they stayed for less time at the hospital, because “they’ve got someone in the community now who can be their support, their comfort, they don’t have to rush to the hospital just to feel safe and confident that they are okay,” she says.
The Australian of the Year Awards will be announced on January 25 7:30pm (AEDT) on ABC and iView.