Most people want to spend their last hours at home with loved ones, but are dying in hospitals instead.
More than 70 per cent of Australians prefer to die at home or in a home-like setting, yet less than 14 per cent do so. This is despite more than 60 per cent of Australian deaths being predictable, and therefore possible to plan for.
Why aren’t people having an ideal end-of-life experience? Professor of Intensive Care, Ken Hillman, says it’s because only 15 per cent of Australians have made an advanced care plan, and because the medical system is not trained to help people die.
Professor Hillman said people dying “as a result of ageing and frailty” need not be subjected to emergency hospitalisation and intervention in their final days.
“Currently, death and dying is highly medicalised,” Professor Hillman said.
“Often, the preferences of the person in the latter stages of life are not acknowledged.”
“Their priorities usually include a desire for personal care, safety, assurance, company, preservation of dignity, and a peaceful, pain-free death. Instead, health professionals focus on their own priorities, which are active medical management and attempting to cure.”
This leaves elderly people receiving unwanted emergency medical care instead of being at home with loved ones.
People need to talk about dying
Professor Hillman is a committee member of The Violet Initiative, an Australian social initiative that supports people who are dying and their carers. The Violet Initiative advocates for greater awareness and planning for end-of-life.
“Australians on the whole, don’t talk openly about death and dying. The topic makes people uncomfortable,” Professor Hillman said.
But talking about dying is the first step to creating an advanced care plan, which formalises a person’s wishes for their end-of-life experience. An advanced care plan documents where a person wants to die, as well as medical interventions they do or don’t want to receive.
It can be a difficult subject, said Craig Gear, CEO of the Older Person’s Advocacy Network. Mr Gear told Advanced Care Planning Australia that it’s best “to get the conversation going”.
“It is so important that we consider how we want to live in a of a variety of future scenarios, the type of care we wish to receive, who we want making decisions about our care if, for whatever reason, we can’t. Talk about it with the people closest to you and who you trust, like friends, loved ones, carers or your doctor.”
Aged care needs to promote advanced care planning
Melissa Reader, CEO of The Violet Initiative, said documenting end-of-life preferences prevents “regretful outcomes” as people age.
“What we’re about is people’s experiences aligning with their preferences,” Ms Reader said.
“So if they would prefer to stay in an aged care home and be cared for there, with dignity and comfort, right through to their death, then it’s important that that’s understood and championed.
“Because what does often happen is that as elderly, frail people’s health declines, there can be crisis moments as they go through that. People can have repeated hospital admissions in the last months and weeks of their life, unless those attitudes and preferences are really understood, and that comes at great cost to the individuals, to their families, and also to the health system.”
Ms Reader said Aged care homes need to support residents and family members to document their wishes for end-of-life care.
“Being clear on the preferences of the person that’s being cared for helps everybody.”
“It helps both the family caregivers and the aged care workforce to understand how to support that person just to have the kind of experience that they want to have.
“But it requires that skill around opening up conversations and being able to support people to articulate that.”
More palliative and end-of-life care services needed
Katie Snell, National Policy Manager of Palliative Care Australia, said support services might not be available for someone wanting to die at home.
“If someone was to stay at home, they’d need a combination of things to fall into place,” Ms Snell said. “Particularly if they’re ageing, they need those aged care supports, such as a Home Care Package, and then palliative care coming into the home. But we know there’s not enough of both of them.”
She said each person would have different needs, and there are several options for finding end-of-life support services.
“Usually, if the person was in the hospital, asking (the hospital) to refer them, or if they’re getting aged care services to ask them to refer them (to services).”
“A lot of people don’t realise GP’s are a really good source of information about local services.”
Ms Reader said people needed to think about palliative care services sooner.
“It’s important to say that palliative care is a really wonderful and very holistic clinical care service. But actually, far too few people access it, and when they do they tend to access it too late,” she said.
“And that’s for a range of reasons, in terms of resourcing and geography in terms of services dispersed across the country. But it’s also fear. People are very frightened of what palliative care is and what it represents. It’s misunderstood.”
Family carers need emotional support
Ms Reader said emotional support for family carers was a big factor.
“It starts with having those conversations early and doing that planning and preparation early within family units and social support circles,” she said.
“And, then it often is on the shoulders of the person in the primary caregiving role… They have so much influence over that situation and they’re actually responsible for a lot of the decisions or at least influencing a lot of decisions. So giving that person support is key.”
Changing the healthcare system
According to Professor Hillman, the medical system itself needs to change to give older people dignity and choice in dying.
“It goes right back to changing the culture of healthcare generally,” he said on a Medical Journal Australia podcast.
“That is really difficult! Because we spend, for example as doctors, we spend five or six years being trained to make people better and cure them. And so that’s ingrained in all of us. We’re not really taught to be honest about dying.”
He said general practitioners play a key role in helping people choose an ideal end-of-life situation.
“(GPs) are absolutely crucial. They’re the key link… But in this country, GPs are not reimbursed for having these long and complex discussions.”
“So it goes back to changing the whole framework, which takes time.”