By Bianca Nogrady
We can talk about good deaths and bad deaths, cheating death or embracing it, but the one thing that we all seem to reach for is this: when we die, we want to do it our way.
Tony Smith* says his mother and father were lucky, if such a word can be used for death.
For while they both experienced long-running, debilitating, and often traumatic health problems in the years before each of them died, when the time came, they died the way they wanted to.
Mr Smith’s father died suddenly in bed from a massive heart attack. His mother chose to be kept comfortable in her final days and hours, no heroic measures undertaken to prolong her life, no resuscitation to bring her back from the brink. She was surrounded by her family as she exited this world at age 78, which was, as Tony says, “on her terms”.
Asking someone how they want to die is awkwardly similar to the stock line from a Bond villain. But at a certain point in our lives, it is one of the most important questions for an individual to ask themselves, for a doctor to ask their patient, and for a family to ask their ailing loved one.
This question can make the difference between someone seeing out their final hours in a peaceful setting — at home, or in a hospice, or in a care facility — surrounded by loved ones, with the only medical interventions being ones to ease discomfort; or dying in a loud, busy, bright emergency department.
We want to die at home
According to one of many surveys with similar results, a South Australian study found 70 per cent of people said they would want to die at home if they had a terminal illness and 19 per cent said a hospital.
But data from the Australian Institute of Health and Welfare showed that in 2011 about 35 per cent of older people died in an emergency care setting and just 3 per cent died in community care.
Dying in a hospital setting is also expensive; it accounts for nearly half of the health costs associated with dying in this group. According to a 2014 report from The Grattan Institute, each year more than $2 billion is spent on older people dying in hospital.
“About a third of all people who die in hospital have only one admission — the one in which they die,” the report’s authors wrote. “The average cost of that admission for those aged 50 and over is about $19,000.”
It’s easy to forget we have a choice
While some of us may want the full suite of medical options in our final days and hours, some of us want to avoid it at all costs. The thing we often forget is that we do have a choice.
Liz Callaghan, the chief executive of Palliative Care Australia, points out that while we go through an often exhaustive process of preparing for birth — going to classes, talking to our family, making a birth plan — when it comes to death there is little planning and very little conversation.
“We’re ignoring those conversations, and by ignoring them we’re leaving family and loved ones with no plan and no idea what we want at a very emotional and difficult time,” Ms Callaghan says.
The analogy with birth is a useful one because many of the same questions need to be considered:
- Where would you prefer to be when you die?
- What sort of medical care would you like?
- What sort of interventions do you want to avoid?
- Who would you like to have with you?
But there is another very important question to be considered for those facing the end of their life, and one that is less likely to apply to a birthing situation: who should speak for you when you cannot?
This is where advance care plans and enduring guardianships become vitally important.
These documents are intended to inform family, friends and medical professionals of your wishes about the sort of medical care and interventions you want at the end of your life, and to authorise certain individuals to speak on your behalf and ensure those wishes are respected.
Their form varies somewhat across states and territories, but one constant is that they are legally binding. A doctor aware of an advance care directive but who acts against its instructions could face charges of assault.
Advance care plans ask a specific series of questions intended to make us think about what interventions we would want and under what conditions.
These documents can and do evolve over time: what we might want when we are still reasonably independent and of sound mind may be very different from what we might want when illness has narrowed our options and the few choices remaining may be intensive and largely futile.
For example, the NSW advance care plan for individuals in residential care asks questions such as “If my heart or breathing stops due to old age or irreversible (not curable) health problems my choice, if CPR is a treatment option, would be to a) please try to restart my heart or breathing (Attempt CPR), b) Please allow me to die a natural death. Do not try to restart my heart or breathing (NO CPR), or c) I cannot answer this question. Let my doctor decide.”
It also asks individuals to think about how acceptable, difficult, or unbearable their life would be if, for example, they couldn’t recognise family or loved ones; have to be fed through a tube in their stomach; or cannot talk, read or write.
It provides space for individuals to write about their specific request with respect to medical care and in particular, life-prolonging treatments they do not want to have.
Mr Smith’s mother had had these conversations with her family, and was very clear about her wishes.
“Mum had strict DNR [do not resuscitate] instructions, she didn’t want any kind of life support, she didn’t want unnatural prolonging of her life,” he says. “Even when she stopped eating near the end she wasn’t force-fed or anything.”
Have the piece of paper and the conversation
But Ms Callaghan says the true benefit of advance care plans lies not in the pieces of paper but in the conversations associated with them.
“If you have those conversations and discussions with your next of kin, they will be confident that whatever they decide on your behalf is what you want,” she says.
It’s no coincidence that an online initiative to provide families with a framework for a discussion around end-of-life choices is called The Conversation Project.
As a GP of 30 years in the Western Australian town of Mandurah, Frank Jones has had that conversation many, many times with his patients. It’s not always comfortable, but he knows how important it is.
“People don’t like talking about their own mortality,” says Dr Jones, also president of the Royal Australian College of General Practitioners. “But I think it’s really important as people do age that we initiate this conversation.”
While we might be a death-defying society on the whole, Dr Jones finds that the vast majority of individuals who have life-limiting illnesses with little hope of meaningful recovery are very happy to have the conversation with their doctor, and happy to work through the one-page explainer he gives them.
The bigger hurdle comes when he suggests they also discuss it with their families.
As effective as an advance care directive might be in getting individuals to decide how they would prefer to die, it’s useless unless it is shared and at least acknowledged by that individual’s loved ones; the people who will be responsible for acting on those wishes.
Directives often missed in hospital panic
An advance care directive is also useless if the medical staff working with that individual don’t know about it.
Unfortunately, advance care directives are often missed in the panic and chaos that happens when someone with a chronic life-limiting illness is taken to hospital.
“In the middle of the night, if that elderly person has a fall, and is whisked off by ambulance to the hospital, the hospital has no idea, unless the family’s involved and unless they know there’s an advance health directive in place,” Dr Jones says.
Unless a person is actually carrying the advance directive with them when they go to hospital, or someone at that hospital knows their wishes, there’s every chance that health care professionals will do what they’re best at — try to save a life by any means possible.
This is why enduring guardianships are almost as important as advance care plans, because they identify the person or people who are legally authorised to speak on your behalf and communicate your wishes.
Those documents may need to be produced to establish that right in a situation where difficult decisions are being made, but they are an important part of ensuring that someone’s end-of-life choices are heard and acted on.
Better infrastructure needed to support end-of-life choices
The other challenge for our health system and society is setting up the infrastructure needed to fully support people’s end-of-life choices, particularly if that choice involves dying at home.
Dr Hal Swerissen, co-author of the ‘Dying Well‘ report from the Grattan Institute, says Australia needs a competent, home-based palliative care system that can support and take the pressure off carers.
“It is a challenge but there are now some really good home-based palliative care services, such as Silver Chain,” Dr Swerissen says.
“They take all the referrals for palliative care in Perth — so they do a lot of deaths each year — and they get 60 per cent of people [referred to them] dying at home.”
As well as enabling so many to see out their final weeks and months of life at home, services such as Silver Chain could also prove to be cost-neutral to the health system.
Dr Swerissen and co-author Stephen Duckett estimated that home-based care for the last three months of life would cost an average of $6,000 per person. If 30 per cent of all deaths were to occur at home, this would amount to an extra $237 million cost to the health care system.
But if these individuals are dying at home, they are avoiding hospital and residential care facilities, which Dr Swerissen and Dr Duckett calculated as a potential $233 million cost saving.
Mr Smith’s mother had hoped to die at home, but the level of medical care she needed at the end of her life meant she spent her final weeks in a palliative care facility. It wasn’t her first choice, but Mr Smith says the level of care she and the family received was excellent.
“We took turns, my siblings and I, to stay all night with her. As much as she wasn’t at home, we were there.”
* Tony Smith has asked that his name be changed.
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