Life's toughest question: how do you want to die?
It's the most contentious subject of all - death - and in an international conference in Melbourne next week it will inevitably cause arguments and aggravation.
No, this is not about euthanasia - at least, not in any way intended by the founders and organisers at the Melbourne-based Respecting Patient Choices organisation. The Advance Care Planning and End-of-Life Care conference, to be held in the city from Wednesday, is instead intended to foster a more humane, personal and sensible way of dealing with medical decisions long before they become the heart-wrenching traumas at bedsides in hospitals and nursing homes.
Advocates say the benefits of setting out in advance what each of us want - and don't want - from the medical profession when the end is near include peace of mind for patients, a clear path for doctors and nurses to follow, and, crucially, an easing of the burden on loved ones who can come to a medical crisis armed with the knowledge of exactly what a husband or wife, mother or father, son or daughter desires. And there's a side-benefit: an easing of the burden on the health system - and therefore the budget.
But no one imagines a crusade for patient choice will be easy. We find it hard to talk about this stuff in our own lives. As a society, the debate is ever fraught. We are talking, after all, about life and death.
Just ask Julian Savulescu, the Melbourne-born, Oxford-based philosopher and ethicist who will be a key speaker at the conference. Savulescu, who was educated at Monash under controversial ethicist Peter Singer, believes people have a right to decide how and when their life will end, but notes that expressing such views opens you up to the extremes of such arguments, and to the extremes of abuse - such as being labelled a Nazi.
"You have to remember," Savulescu says, "that it's not so long ago that people were burnt at the stake for being witches. They're not physically burnt at the stake today but the same sort of behaviour still occurs when people go against the tide."
Savulescu believes anyone should be able to issue a directive that they do not want doctors to provide nutrition or hydration. In a landmark Victorian case a decade ago, the Supreme Court found food and water constituted "medical treatment" - and thus defined that under the law they could be withdrawn.
The debate over that still rages today - legally sanctioned euthanasia, critics called it. Savulescu says of the food-and-water question: "It would be, if you like, a loophole that would allow de facto assisted suicide. So I think there's a real question whether through the refusal of eating and drinking people can control the timing and circumstances of their death - which is what assisted suicide and euthanasia aim to do."
How far, he asks, will we go "to allow people to decide the circumstances of their death"?
As he returns to Melbourne to join the debate, he knows he will face fierce attack for expressing such views - but he insists these are discussions we need to have.
"Even if, in the end, we decide that people can't die by refusing food and fluid, or even by refusing artificial nutrition, fine. But we should have a discussion about that and everyone should take part in a thoughtful and engaged way, rather than this lynch-mob mentality that pervades most ethical discussions today."
Next week's conference is the fourth such conference on advance care planning organised by Dr Bill Silvester, director of the Respecting Patient Choices program based at Melbourne's Austin Hospital.
Effectively, advance care planning means that you - in a competent state, and whether you are suffering a serious illness or not - set out written and verbal guidelines to doctors and to loved ones establishing what medical treatment you want, and setting out particular circumstances in which, for example, you would not want to be resuscitated or be kept alive through artificial provision of nutrition and hydration.
The idea, says Silvester, is to remove these crucial discussions and decisions from the emotion-charged atmosphere of the intensive-care unit - or even from your own living room, where you lay prone after a heart attack or stroke, leaving loved ones to make these agonising decisions on your behalf.
"That's why we find with advance care planning [that if] discussions can occur at an earlier stage, when they do get to the point, a lot of that heart-wrenching discussion has already occurred," Silvester says.
He says research has found five key factors identified by people as amounting to "a good death": to avoid prolongation of death, to maintain control of the time of dying, to not suffer near the end, to relieve the burden on the family, and to strengthen relationships. "Given those five key elements for having a good death, they are all things that are improved by having advance care planning."
A study done at the Austin, he says, "showed not only did advance care planning improve end-of-life care, but it improved the level of satisfaction for the patient and family, and it reduced the risk of post-traumatic stress, anxiety and depression in surviving family members".
Silvester says it's important that "we don't leave it to the families to struggle with this [on their own], and we come up with a conversation and lead the family and the patient in a sensible and compassionate way through the whole process."
It sounds sensible enough, but the devil is, as ever, in the detail.
In Australia, the state you live in - or die in - has a crucial impact on how your wishes are interpreted, or even if they are given weight at all.
In Victoria, under the Medical Treatment Act, you can complete an advance care planning form right now - but whether that will be recognised if you happen to have a stroke while on holiday on the Gold Coast is another question. And if you were then moved across the Queensland border to a hospital in NSW? There, they have no specific laws governing this area at all.
Peter Saul, a senior intensive care specialist at John Hunter Hospital and adviser to the NSW government on ethical issues, despairs at the state-by-state discrepancies that frustrate a truly national policy stance on end-of-life planning. NSW, Saul says, stands alone because "the lobby groups have much more purchase than in some other states. There are political reasons . . . why NSW won't deal with this issue", for which we can read the influence of the Reverend Fred Nile in the NSW Parliament.
"The Queensland process doesn't bear much similarity to the Victorian process, in terms of how you document your wishes. In South Australia they've introduced new legislation very recently, and that's different again from neighbouring states. Western Australia has only recently introduced legislation," Saul says. "Every state is doing this piecemeal, without much reference to any common framework for it."
And what of the role of family members or other loved ones in acting on an advance care planning statement?
"It's very unclear in many states exactly what the role of the family is when it comes to the end of your life," Saul says. "Are they allowed to act in what's called 'your best interests'? In NSW? No. In Victoria? Partly. In Queensland? Definitely. So even the most basic notion of the role of your family . . . it differs in terms of the legislation state to state.
"I think people even within the health system have really no idea of the legislative background. The general public have no idea at all. Even the people meant to administer this - who are us, the doctors - if I sent a questionnaire to 100 doctors in NSW asking what the law is about end-of-life, there'd be zero per cent who had any idea."
Then there is the difference, legally, between advance care planning (as provided for under Victorian law, for example) and advance care directives. Saul supports the notion of a national standard for directives - legally binding documents that cannot be altered without the patient's consent.
But opponents such as Associate Professor Nicholas Tonti-Filippini, a Catholic ethicist, says the distinction is crucial.
"I support advance care planning but not advance care directives. I think people should appoint someone to make decisions for them, which is what the Victorian legislation allows for, and then they should discuss with that person what their values are and any specific things they're concerned about - but they ought not issue directives. Directives are not informed consent because they don't know what's going to happen in the future."
Tonti-Filippini, who himself has a terminal illness - severe renal and heart problems, and auto-immune disease - says: "It's a mistake to think you can direct the future from some time in the past."
He also takes issue with some of the language used by Bill Silvester's Respecting Patient Choices program on its website. "If I have an unsatisfactory condition, it basically says 'all forms of life support can be withdrawn'. Now, I just see that as euthanasia. If you withdraw things like antibiotics, nutrition and hydration, then you're just sentencing somebody to death and that's an incredible circumstance to demand of a healthcare team.
"That person has made that declaration sometime in the past when they have no experience of the illness that they eventually get. So I think their language is unfortunate."
Tonti-Filippini adds of Julian Savulescu: "He's pro-euthanasia. It does apply to this area and I guess that's where he and I would differ."
There's that word - euthanasia - the word that can divert this debate down darker, more sinister paths. As Tonti-Filippini puts it, "There are obligations to take reasonable care that still exist. They are not taken away by the Medical Treatment Act. The Medical Treatment Act doesn't allow manslaughter."
Peter Saul argues that advance care planning isn't euthanasia, but says opponents can conflate the two issues. Saul says he doesn't support the Greens-sponsored bill, introduced into the NSW Parliament on Thursday, that would give terminally ill people the right to die. Advance care planning, he says, is for everyone, whereas situations where euthanasia might be contemplated would realistically affect only "a tiny percentage of cases".
He suspects that the widespread public support for right-to-die legislation is because Australians fear losing control at the end of their lives and advance care planning gives them back that control.
For his part, Savulescu - commenting generally, and not on
Tonti-Filippini's remarks - says the extremes of the debate have forced even forthright advocates like himself to watch their words.
"You can connect together every fanatic around the world in a matter of seconds today . . . I think we're starting to self-censor what we say because you can't even put an idea out and have discussion, because suddenly the internet falls on you.
"At the end of the day it's going to mean that pressure groups, and people who threaten and who are prepared to use physical or verbal force, will be the ones that dictate social policy."
Silvester says the advance care planning of the kind his organisation advocates in fact leads people away from thoughts of euthanasia. "We've found that when you do advance care planning properly, that if a patient has been thinking about euthanasia - if they thought that was the only way they could maintain control in the end - they turn to us and tell us they've now turned away from euthanasia.
"They now feel like their wishes are known and will be respected. It's a huge weight off their shoulders and they can now focus on living as well as possible."
Details of the International Advance Care Planning and End-of-Life Care conference, Melbourne International Exhibition and Conference Centre, May 9-11, can be found at acpelsociety.com.au/conference
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