The evidence supporting community-based palliative and end-of-life care is growing and health and aged care providers should work to support existing community networks, an international expert says.
Dr Julian Abel, a palliative care specialist with the National Health Service in the UK, said that families should be trained to provide end-of-life care, including manual handling and administering injections, “because they’re doing it anyway.”
“Once we train someone then that person has those skills that can benefit the whole community,” Dr Abel told the inaugural Compassionate Communities Conference in Sydney on Monday.
The event brought together aged care providers, end of life specialists, academics and policy makers to advance the community-based approach to palliative care in Australia.
Dying, death and loss were not solely the domain of care professionals but were “everyone’s business” as they occurred everywhere in the community, not just in hospitals and aged care facilities, Dr Abel said.
Contrary to conventional wisdom in health and aged care circles, Dr Abel said he did not believe the community had a problem with talking about death.
“It’s us professionals who have the problem,” he said. “We know health professionals don’t like talking to people about where they want to die.”
He encouraged Australian health and aged services to identify and support the community groups and networks that were already working to care and support those with life-limiting illnesses.
Liz Callaghan, CEO of Palliative Care Australia, said that caring for people who were near end of life required more than clinical skills.
Stretched health budgets and an ageing population meant new approaches to providing end-of-life care and support were urgently needed, Ms Callaghan said.
An inclusive approach
Professor Bruce Rumbold, director of the palliative care unit at La Trobe University, said the characteristics of the compassionate communities approach included meeting the special needs of seniors and those with life-limiting illnesses, a strong commitment to social and cultural differences and involving aged care and palliative care services in government policy and planning.
It also promoted reconciliation with Indigenous people, the provision of access to grief and palliative care services and the inclusion of disadvantaged people, including those disadvantaged by geographic distance or economic circumstance.
Kerrie Noonan of the GroundSwell Project, a movement to improve death literacy, reminded the audience that compassionate communities was a “home-grown movement” that was first articulated in a book by Australian academic Alan Kelleher.
“Compassionate communities is now an idea that is well and truly moving into the mainstream,” Ms Noonan said, adding that research demonstrated the approach benefited not just the person approaching end of life but those around them.
Alzheimer’s Australia national ambassador Sue Pieters-Hawke said there was a “new narrative” emerging in Australia which was combating the dehumanization of people living with dementia, instead adopting a more empowering human rights approach.
Nonetheless, the number of staff in the health and aged care sector who did know understand that dementia is fatal was “staggering,” she said.
“Imagine if they were more aware about what was coming, and about the possibilities of a good death,” Ms Pieters-Hawke said.
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