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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I couldn’t agree more. My father died last year and really wanted to die at home which we almost managed. He was readmitted at the very end due to a fall which was partly due to us not being skilled enough in what to do as he became more agitated on the drugs. Luckily he was pretty much unaware by then of where he was anyway as I would hate to think of him being upset by not dying at home. He had made it very clear that he was ready to die and was in full possession of all of his faculties and we had talked about it as a family, this was not a problem it was just more about knowing what to do for him physically. I work with nurses and doctors but am a scientist not medically trained.
Ann, I am sorry for the loss of your father. I think you have also highlighted that although you all wanted to abide by and do all you can with the care of your father you could not. You did not know what to do for him physically. neither should you be expected to. I think when it’s our own and we have never done this before or hands on with the physical care…how can anyone know. Just know , you are not a failure to your fathers wishes, you did all that you could. Look I am an ex-Nurse , but I think nothing prepares you for your own. But maybe through you sharing this you have highlighted a point ….you are trained and hold a degree in science ….you are a clever lady …..but you have never had the medical training or had to do the physical care before. Particularly when it is so close to you. I guess this is something we just need to take in to account when we come to respect and honour our loved ones wishes. My question is, how can people like yourself be more supported in this situation, how can our systems or current planning help all when faced with this situation.
My husband died last november, he was a prominent member of the community , and in his name we are setting up a foundation to assist people who want to die at home be able to. What ever they need to do this, we will help.