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5 MAY 2013

Euthanasia article in The Age:

Death on her terms

By Neil McMahon

As someone who has lived much of her life on borrowed time, mother-of-two Lisa Leskie long ago made plans for the end. She talks about the importance of having ''the conversation''.

After a life lived on borrowed time, death holds no fear for Lisa Leskie. Photo: Angela Wylie

For most of us, it is the hardest conversation of all, but for Lisa Leskie, talking about the prospect of her death and the manner of her passing, chosen by her in advance, holds no fear.

As a baby, they said she was already living on borrowed time - congenital heart disease, nothing that could be done. She was not expected to live past her fifth birthday. But in the four decades since then, she has heard this and faced it again and again, never far from yet another medical crisis.

And so the conversation none of us want to have - in our own heads, or with our loved ones, or with a doctor - long ago ceased to lurk in the shadows as a subject too fraught and painful to bring into the light of daily life.

Leskie, 41, from Torquay, has done it. She has thought about it at length - what she wants from the medical profession, and what she does not want. She has discussed it with her doctors. She has discussed it with her family. She has told them what she has decided - and she has written it down.

''My kids know,'' she says of her sons, Sabian, 15, and Kaleb, 10. ''My husband knows, he has a copy. Mum has a copy. The hospital has a copy. Even the funeral people have a copy, because I don't want a funeral - I want a thanksgiving. It's peace of mind for everybody. It's peace of mind for the doctors. It's peace of mind for my family. For me, this has been fantastic.''

When doctors and nurses and politicians gather in Melbourne this week for a global conference on advance care planning for medical treatment, it is likely that Leskie's story will resonate more powerfully than any discussion on the policy and political implications of end-of-life planning, because, in essence, the issue boils down to the deeply personal. It is all about that conversation - the conversation advance care planning advocates want us all to have with our loved ones and with our doctors.

Geelong Hospital intensive care specialist Charlie Corke is one of the doctors more comfortable - through hard-earned experience - with initiating those sensitive conversations.

''It raises questions about whether life is sacred or whether it's a negotiable thing about quality,'' Corke says.

''Thinking about death is quite difficult for a start and conversations around this subject are really quite complicated. It's about dignity, it's about burdens, it's about outcomes. And I cannot predict what is going to drive you as a patient; you need to tell me. For some people, dignity is most important. But for some people, there is dignity in suffering. This is all about personal choice.''

Bill Silvester heads Australia's Respecting Patient Choices program, based at the Austin Hospital, and is the convener of the international end-of-life conference that will be held in Melbourne this week. He says while these conversations are the key to giving patients greater control of their fate - and the peace of mind that goes with it - the health system must provide the framework to carry out a person's wishes. That means funding - to make the advance care planning process easily available to all, to ensure front-line medical staff are trained to lead and guide people through complex discussions and have time to do it properly.

With federal Health Minister Tanya Plibersek not just attending but launching the conference on Thursday, Silvester is hopeful this is a sign that with the budget imminent, the minister may announce new spending in the area.

And with Australia grappling with the myriad issues posed by an ageing population - and an accompanying epidemic of dementia - he argues that advance care planning is going to become increasingly important to the effective functioning of the health system.

''If we don't improve in an authorised and standardised way the manner of getting doctors and nurses to speak to elderly people about what they want, we're just going to be completely lost in a sea of inappropriate treatment throughout the country,'' he says. ''We've shown already that if we introduce advance care planning in all aged-care facilities across Australia, we would save the health budget a third of a billion dollars a year. But this is not about the money. This is about improving quality of care, and particularly identifying what patients would or would not want.''

Corke has developed what he calls ''personal values profiling'' as part of his work on advance care planning discussions. Before settling on a medical plan, patients complete a survey that explores more deeply their hopes and expectations. He surveyed more than 1000 people aged 55 and over and the results, he says, were surprising.

As he reported in the British Medical Journal: ''Only a small minority of people have values that support the medical default position [i.e. to do whatever possible to save life, whatever the burden of treatment and however poor the outcome may be].

''So it is very different to what we [the medical profession] are actually doing. That's very revealing, I think.'' Corke breaks the results down into three groups. The first, comprising only 7 per cent of people, believed in extending life no matter what the consequences. The second - 32 per cent - ''viewed quality of life as important but were willing to accept some limitations''. And the third - 61 per cent - ''view quality of life as paramount and would rather die than accept limitations''.

Such results come as no surprise to Julian Gardner, the former public advocate in Victoria who was at the centre of two memorable legal storms when he held the office. Most significantly, as the guardian of a woman kept alive by tube feeding, he won a 2003 Supreme Court decision that artificial feeding and hydration could be classified as medical treatment, and therefore could be withdrawn. In 2005, as legal guardian of body-in-the-boot victim Maria Korp, he directed her life support be turned off.

These cases may appear to be at the extreme end of debate over end-of-life planning, but Gardner remains a forceful advocate of the need for people to make known their wishes on medical treatment. ''Advance care planning itself is a relatively new practice,'' Gardner says. ''There is still some resistance to it here in Australia, but I think there is generally now an understanding that it is a positive way of giving effect to human rights.

''It enables me as an adult to have autonomy, to refuse medical treatment once I've become incompetent, when it becomes very difficult to express my wishes or exercise my rights. Advance care planning allows my autonomy to extend beyond when I can no longer speak for myself.''

At the other end of the spectrum are right-to-life advocates, such as Victoria's veteran campaigner Margaret Tighe. She was in court in 2003 when the food-and-water decision was handed down. ''That woman was made to die by the court. She would have died in her own good time,'' Tighe says today.

She regards advance care planning as ''very dangerous''. ''People have no idea what the future holds and they can be signing their lives away,'' she says. ''I think it's dangerous. Why should we be doing this? A good and competent doctor knows when nothing more can be done for a patient.''

However, even the resolute Tighe, 81, says personal experience has shown her there are moments when everyone has to acknowledge further medical intervention is unwise.

She has seen one older brother pass away, at 87, and says that when the prospect of further treatment was raised in his case, she accepted his time had come.

''You can't flog a dead horse, can you,'' she says. ''And I said I didn't think that would be appropriate.''

Another brother is now ill in a country nursing home, and she says: ''If he took a turn for the worse, we wouldn't be expecting that he'd be rushed back to the hospital and put in intensive care. That wouldn't be appropriate.''

Sometimes, she acknowledges, ''you can't make a black-and-white case''.

And that, surely, is the point - that personal circumstances, and personal wishes, in the end become paramount. Advance care directives are a means of giving formal expression to those wishes - and to giving context to each circumstance. But until they are more widely embraced, and until Australian states adopt uniform national laws on the issue, doctors and nurses, patients and their loved ones are sometimes simply dealing with end-of-life situations as they arise, on an individual basis, says Peter Saul, an intensive care specialist at Newcastle's John Hunter Hospital.

''What we tend to do is just work with people in an ordinary human way,'' Saul says.

''To be honest with you, I think a lot of what we do would, technically speaking, be unlawful. It's probably operating somewhere on the verges of law or what's known about the law, and we try just to get on with it. While there's uncertainty about what the law would allow us to do, we just seem to get on and reach an agreement that people seem happy with. [But] it's not a good situation.''

Julian Savulescu, the Melbourne-born, Oxford-based philosopher and ethicist who is addressing this week's conference, says the confusion surrounding end-of-life medical law must end - and that if this is to happen, it will be driven by ordinary people standing up for a belief in the dignity and autonomy of their fellow human beings.

''I think we need to have a rethink of our personal ethics - [and to] respect the decisions of the people that we love, even when they cause us suffering and when [their decision] is not what we would do,'' he says. ''In the end, people have a right to live their life as they want and a right to die as they want. I think we, as family members and members of the community, must support that more, rather than forcing a person to live or die the way we would want them to.''

Which brings us back to that difficult conversation - and to Lisa Leskie, and the story she will tell the conference. She will reveal it in all its sadness and struggle, because therein lies the point of why she has chosen to stand up as a symbol of what she believes is a better way forward.

''They said I wouldn't make it to my fifth birthday. I had a stroke when I was six. They didn't think I was going to make it then, either. I couldn't exercise, I couldn't run. They couldn't do anything to help me,'' she says.

At 12, they gave her a pacemaker - ''I found a new lease on life.''

She went on to become a fitness instructor, but when she was 20, there was more heart trouble. ''They told me I wouldn't survive; I was in hospital for six months. But I survived that as well. I turned 21 in hospital. They told me I couldn't have children. Of course, I didn't listen to them - I have my two boys.''

Then, seven years ago, she had another heart attack - and two years after that, a stroke. Today, she remains dependent on medication, forever vulnerable to infections that could ravage her weakened body.

She is a survivor, but also a realist - she knows better than anyone how fragile life can be, and that more than most hers is cursed with uncertainty.

When the suggestion of devising an advance care plan was put to her, she knew she had to do it.

''If I was to have a heart attack, or go into an attack and need resuscitation, would I come out of it? I knew within myself that if something like that happened - if I went into a coma or I needed resuscitation - I wouldn't want it,'' she says.

''I decided I needed that confidence in the doctors from the advance care plan. I know what I want to do. I couldn't put the burden on my husband or on anybody else to turn life-support off. And I want them to remember me the way I am. I don't want life-prolonging treatment at all - and if it has been commenced, I have requested that it be discontinued. It's done. I've done it. And there'll be no arguments with anybody. I've made the choices.''

Remarkably, Leskie says she counts herself blessed - both from the life she has lived to now, and for the wisdom it has given her to come to terms with death and set about facing it on her terms.

''I've probably been lucky that I've been unwell for so long. I know that sounds strange, but I've had the time to think about it. So if I can change the minds of people, that's why I'm speaking … because they may not have the time to think about it like I have. To me, speaking about this is to try to help others.''

6 MAY 2013

Letters in The Age:

Pride and shame

I read with pride and disgust Carolyn Webb's article, ''Helping beloved pets die with dignity'', (4/5). Pride in the human race that it could love and respect another species enough to give it a death which reflected the value of its life, and disgust in the human race that it could not extend this love and respect to itself.

David Cocks, Keilor East

Keep up the discussion

The Age misrepresented me as opposing voluntary euthanasia legislation, and being at odds with the Australia21 report (''Euthanasia should not be a 'quick fix''',, 26/4). I hold no absolute opposition to legislation allowing voluntary assisted suicide.

Precedents overseas, ''popular opinion'' and concerned liberal thinking will probably effect such legislation somewhere in Australia in the future. Such legislation needs long and full discussion, which Australia21 has promoted.

Voluntary assisted suicide is no alternative to the good care I seek to promote for dying persons. It ought not be able to be activated at short notice. Any decision to end life needs an unhurried, comprehensive assessment acknowledging the views and understandings of the patient and those engaged with that life who will be affected by that death.

Australia21 should keep trying. It seeks a ''consensus'' from a wide variety of opinions, and hopes to bypass ''incoherent'' aspects of current law that distinguish withdrawal of treatment from provision of a lethal dose and intention when administering heavy sedation. I work with these ''incoherencies'' every day; they will persist for practising physicians under any foreseeable legislation. There is quite a long way to go before satisfactory legislation is finally drafted - discussion must continue.

Ian Maddocks, Senior Australian of the Year, 2013

7 MAY 2013

Letter in The Age:

What About Suffering?

Nicholas Tonti-Filippini opposes competent patients making their own choices about withdrawing life-support, not addressing the intolerable suffering that results (''Life's toughest question'', 4/5). He may want doctors to force medical treatment on him and his loved ones when they've asked for it all to stop, but why should he force it on me, or you? Why should his will prevail over my body?

Janine Truter, The Basin

12 MAY 2013

Letters in The Age:

The big issue: Right to die

Dr doesn't know best

Margaret Tighe (''Death on her terms'', Extra, 5/5) vigorously opposes advance care directives made by the individual concerned, preferring to leave end-of-life treatment with ''competent doctors'' and, in the case of her brothers, in the hands of family members. This view harks back to the paternalism of the 1950s, when ''doctor knew best'' and patients had no voice.

Medicine has come a long way since then, in terms of patient autonomy and informed consent, and the growth of palliative care as a discipline. I support Mrs Tighe's decision to give away her control over her dying - but not to give away mine.


Death defeated

Lisa Leskie's moving account of her journey through serious congenital heart disease to the possibility of early death illustrates in spades the essential principles in achieving a good death.

These are preparation - appointing a medical agent and an advance directive; understanding - of the nature of your disease and its likely progress, and of what the law allows; communication of one's wishes to family and doctors; and, finally, acceptance of the reality of dying and coming to terms with that.

Ms Leskie clearly has reached acceptance of the reality of her death, banishing anger, recrimination, guilt and depression to open up a space where she can live well and embrace life in the peace that such a space brings. She has defeated death by banishing fear of death.


Missing piece of plan

Lisa Leskie is brave and strong to stand up for the rights of every Australian to die as they wish. That we are ageing fast and only up to the ''fourth'' Advance Care and End of Life conference means we need to grow up fast. As for plans, we accept them as necessary for life's journey - to study, to travel, to marry, for careers, for births, for education and professional development and then for retirement. Advance care and end-of-life planning is the missing piece and makes perfect sense.


Free to choose

It's a sad irony that, when confronted with ethical questions such as voluntary euthanasia, abortion or marriage equality, social and religious conservatives never seem to have a problem imposing their set of moral judgments on the rest of society, wanting to deny others the right to make their own choices.

Yet, if voluntary euthanasia and same-sex marriage became legal, said conservatives would not be denied one iota of their rights to object to, and abstain from, such practices, just as they currently do with abortion.


Much to live for

There are two aspects of death to talk about - the process of dying and the condition ensuing when, as Hamlet put it, ''we shuffle off this mortal coil to sleep, perchance to dream''. We may all hope for a peaceful drift into whatever comes next, but the process is usually sorrowful for loved ones, and can be traumatic. What does come next?

Sadly, I cannot believe in a mystical communion of saints or the Heaven of an all-powerful Creator whose creation has so many unlovely elements. If and when my life becomes unbearable I hope to be able to secure a smooth passage into dream-free unconsciousness usefully distinguished from oblivion by some ongoing presence in others' comforting remembrances of love and laughter. But there's no hurry; I'm only 84 and there's much to look forward to hereabouts.

JOHN BAYLY, Hawthorn

13 MAY 2013

Report from the BBC:

Right-to-die cases heard at Court of Appeal

Paul Lamb: "I'm hanging on as long as I can"

Two severely disabled men and a widow have taken their right-to-die cases to the Court of Appeal. Paul Lamb, who is paralysed, a man with locked-in syndrome known as Martin, and the wife of the late Tony Nicklinson are seeking to challenge the law.

They want health professionals to be legally protected if they assist people who wish to end their own lives. Judges at the hearing said the case could not be decided on the basis of "personal sympathy".

'Personal sympathy'

In August, Mr Nicklinson, 58 - who also suffered from locked-in syndrome - lost his High Court bid to end his life with a doctor's help. He died a week later.

His widow Jane is continuing her late husband's battle in the courts by challenging the ruling, which related to England and Wales.

Mr Lamb, 57, from Leeds, was paralysed from the neck down in a car accident in 1990 and wants a doctor to help him die.

He has also taken up the case begun by Mr Nicklinson and is seeking a ruling that would give doctors a defence to a murder charge.

Martin, 48, who has locked-in syndrome caused by a massive stroke he suffered in August 2008, is seeking a change to the prosecution of assisted suicide.

Mr Nicklinson's family pledged to continue the legal fight after his death

Lord Judge, sitting with the Master of the Rolls Lord Dyson and Lord Justice Elias, will hear arguments in the three cases over the course of several days.

At the start of the hearing, Lord Judge said: "We are acutely aware of the desperate situation in which the appellants find themselves, and we are very sympathetic."

But he added that "we cannot decide this case as a matter of personal sympathy".

It had to be decided on the "basis of principles of law" after the court has heard all sides, he said. 'Distressing and intolerable'

At the High Court in August, Mr Nicklinson had sought declarations that there should be a defence known as "necessity" available to a doctor assisting him to die - based on the argument that it was necessary for a doctor to act to stop intolerable suffering.

He argued that the law was incompatible with his right to respect for private and family life under Article 8 of the European Convention on Human Rights - which he maintained included a right to autonomy and self determination at the end of life.

Paul Bowen QC, representing Mrs Nicklinson and Mr Lamb in their cases against the Ministry of Justice (MoJ), said the High Court had "rejected the claims because, in summary, it considered Parliament, not the courts, should be responsible for changing the law in this area".

He said the High Court "did not decide the substantive issues at the heart of the claims" of whether the current law does "disproportionately interfere" with the right to respect for private and family life under Article 8 of the European Convention on Human Rights, nor whether the defence of necessity is available to a doctor providing the assistance to die.

Mr Bowen said Mr Lamb, who has no function in his limbs apart from a little movement in his right hand, also wished a doctor to end his life and he sought the same declarations originally sought by Mr Nicklinson.

The court heard the father of two had been in pain for 23 years, needed 24-hour care and his life consisted of "being fed and watered".

David Perry QC, for the MoJ, expressed sympathy for the late Mr Nicklinson and Mr Lamb, but said the High Court had "correctly dismissed" the case in August.

"The state of the criminal law in this respect does not violate the right to respect for private life under Article 8 of the Convention," he said.

The court also heard that Martin, who is unable to speak, virtually unable to move and who describes his life as "undignified, distressing and intolerable" wanted a "dignified suicide".

Current guidance makes it clear that friends or family assisting a suicide out of compassion are unlikely to be prosecuted. But his wife does not wish to be actively involved in his suicide.

Instead, he wants health professionals to be able to assist him to end his life.

His solicitors argue that Article 8 also requires the director of public prosecutions (DPP) to develop his policy so this could happen.

In a written argument before the court, Philip Havers QC, for Martin, said his client had "never asked the courts to decriminalise assisted suicide", but was seeking "clarity about how the DPP's prosecutorial discretion will be exercised".

'Modern society'

Yogi Amin, representing the British Humanist Association - also a party in Mr Lamb's case - said the law "should be certain and reflect modern society".

"Both Parliament and judge-made law should develop to allow for personal autonomy," he said.

Disability rights group Scope and anti-euthanasia campaigners have argued current laws protect vulnerable people.

In Scotland, there is no specific law on assisted suicide, although in theory someone could be prosecuted under homicide legislation. The law in Northern Ireland is almost identical to that in England and Wales.

21 DECEMBER 2013

Article in The Age:

Belgium on track to allow child euthanasia

By Elisabeth Braw

Jutte van der Werff Ten Bosch has already had the talk with her 10-year-old son. Several times, in fact. No, not the sex talk. The euthanasia talk.

''Even if he said, 'I want to die', I'd support him,'' she explained. ''I didn't put my children in the world for me. It's their life and their death. The best parents are the ones who let their children go.''

Professor van der Werff Ten Bosch's dinner-table conversations with her son and her three other children are far from hypothetical: They live in Belgium, where a law allowing child euthanasia is on track to be passed early next year.

The law, which follows a 2002 law making euthanasia legal for consenting adults, will allow terminally ill children of any age to request that their lives be ended.

''Children are not tiny humans that we can boss around,'' said van der Werff Ten Bosch, a paediatric oncologist who works at Brussels University Hospital and has spoken in favour of the proposed law. ''Children with terminal diseases like cancer mature much faster than other children. They think a lot about their life and death and how they'd like their death to be. And sometimes they're more courageous than their parents.''

Belgium's upper house, the Senate, passed the child euthanasia bill on December 12 by a big majority. It is expected that the lower house, the Chamber of Representatives, will then approve the bill as early as January or February. The bill stipulates that doctors can suggest to terminally ill minors they should be euthanised.

After the child decides in favour of death, the parents have to consent, though the law makes no provision for what will happen if the parents disagree. Euthanasia is usually performed by a doctor, who gives the patient an overdose of muscle relaxants or sedatives. This causes a coma followed by death.

Since Belgium passed its adult euthanasia law, the number of patients who have asked to be killed has grown to more than 1400 per year. It conjures up a Soylent Green world where a neatly ordered state routinely euthanises its older population to maintain a population balance.

One Belgian who took advantage of the euthanasia law was Nathan Verhelst, a woman-turned-man whose body rejected his new penis. In a newspaper interview, Verhelst explained he didn't want to become a monster, and this year his doctor gave him a lethal injection. Today, Belgium, Luxembourg, and the Netherlands are the only countries in the world permitting euthanasia administered by a second person.

But the laws have raised a number of ethical, moral, and legal dilemmas. Such as, is it right for a parent to propose the legal killing of their child in any circumstances? And, as children don't have the same reasoning skills as adults, are they equipped to make a terminal decision about their lives that will also deeply affect the lives of others?

Like most animals, humans have an innate instinct to protect their young. As the 20th-century German theologian Dietrich Bonhoeffer wrote: ''The test of the morality of a society is what it does for its children.''

Have the Belgians gone completely mad in allowing doctors to help children die? Or are they, by contrast, on track to become earth's most compassionate society because they'll end children's suffering?

''Of course, I had a long debate with myself before deciding to support this law. Every senator did,'' said Philippe Mahoux, Senate group leader for Prime Minister Elio Di Rupo's Socialist Party, which introduced the bill. ''But it isn't always possible to alleviate these children's pain. That's the main point.''

The issue has divided Belgians, not along political lines but according to personal morality. ''I don't know what to think,'' said Sebastien Petit, 34, a movie industry worker in Liege. ''On the one hand, I think it's wrong to kill children. But on the other, I realise these children are suffering.''

His wife Marie, 28, an occupational therapist, said she thinks the adult euthanasia law works well, so she sees no problem in extending it to children. According to a poll by La Libre newspaper, 74 per cent of Belgians are in favour the law.

Yet faith groups from the Catholic Church to Muslims and Jews remain firmly opposed, as do many doctors and nurses. ''It's always possible to control pain and terminal anxiety with medication,'' said Dr Benoit Beuselinck, a medical oncologist at the University of Leuven Hospitals.

''If that's not enough, a palliative sedation can induce the child into a deep sleep, and it won't suffer any more. The patient will then usually die within several days and during this period the family can stay with the child and start the mourning,'' he said. ''The process of dying is a natural process, and we have to respect this natural process as much as possible.''

Proponents of the law, however, consider such arguments outdated. Peter Deconinck, emeritus professor of paediatric surgery at the Free University of Brussels, said it's high time to break the taboo surrounding child euthanasia.

''It's our duty. Children today are not like they were 50 years ago. They have mature minds,'' he said. ''It's not like terminally ill children go to the doctor and say, 'I'd like to die'. But terminally ill children spend a lot of time on oncology wards. It's a doctor's duty to speak to such a child in a plain manner, perhaps not saying everything the first time, but little by little.''

Besides, say supporters of the bill, child euthanasia is already happening in Belgium. ''In reality, paediatricians are compelled by compassion to end the lives of quite a few children with the agreement of their parents,'' said Jan Bernheim, professor of medicine at the Free University of Brussels and a pioneer in palliative care.

''They've had to do it clandestinely, with the risk of being charged by prosecutors,'' he said. ''Now they'll be able to do it the legal way.''

Before they give the full weight of the law to child euthanasia, Belgian politicians will have to tackle other implications: for example, how to handle the likely rise of euthanasia tourism.

Of course, death won't just be a matter of the child uttering a fiat mortem. The law requires statements by psychologists and doctors confirming the child's ability to make the decision. The child's doctors must also inform the child about medical options that may ease suffering and maintain a dialogue about preferences. Even so, the fact that the word euthanasia can now be uttered to gravely ill children may put pressure on them to end their lives. ''I don't think we should be proud of killing our children when we have good palliative care,'' said Carine Brochier of the European Institute of Bioethics in Brussels. ''We're becoming the world's euthanasia laboratory. Euthanasia is becoming a Belgian trademark, just like waffles.''

She warned the child euthanasia law would open an ethically dangerous door. ''What's next? Euthanasia for people with dementia? Then for handicapped people?'' she said.

''Becoming fully human is a gradual process that's completed when the foetus becomes viable and has finished acquiring all the potentials to become a person,'' said Bernheim. ''Similarly, the end of life with dementia is a gradual process of involution in which most attributes of personhood end up being lost.

''Already now, almost everywhere, such patients are not resuscitated or given antibiotics, treatments that are considered futile when they only prolong suffering. Their blighted life is not considered deserving of the degree of protection that is given to other human life.''

According to this school, euthanasia for the demented would be better than simply waiting for a lethal bout of pneumonia. But where to draw the line? ''Recently an elderly couple was euthanised, just because they were 'tired of living,''' said Beuselinck.

Indeed, deciding who qualifies for life comes close to playing God, and that power has been taken to extremes before. In the Third Reich, German doctors killed more than 10,000 handicapped or incurably ill children. Unlike Belgium's children, the German children were never asked whether they wanted to die. But if the law were to pass in Belgium, doctors would be allowed to suggest to children that they agree to be killed.

''Of course, it's a difficult conversation,'' said van der Werff Ten Bosch. ''Usually the parents ask, 'What can we do now?' Now we'll be able to give them not just the various medical options, but also say, 'There's the option of choosing to die'.''

Passing the new law permitting children to agree to the end of their life will reflect on Belgian society, its morals and duties. ''What does child euthanasia mean for our life together in Belgium?'' said Brochier. ''The answer to terminally ill children's suffering is more solidarity, and that includes more financial support for palliative care.'' The third part of this new death trinity, complementing the doctors and the child, are the parents. According to van der Werff Ten Bosch, most parents don't want their child to suffer, and ''if the child says, 'I really want to die,' 90 per cent of parents will let him''.

Still, the choice between consenting to one's child's death wish and prolonging his painful life presents parents with an agonising spectrum of emotions. Some doctors argue that it places parents in such an excruciating position that it would be more compassionate to leave them out of the decision altogether.

Sebastien and Marie Petit try to visualise what it would be like if they had a terminally ill child who wanted to die. ''I'd listen to as many opinions as possible,'' said Sebastien. ''I'm not a medical professional, so I'd go with what the majority told me.''

A majority vote on a child's life or death? Belgium is indeed entering a chilling new world.

23 DECEMBER 2013

Letter in The Age:

The painful difference

Oncologist Benoit Beuselinck claims that ''it is always possible to control pain'' in the dying; but then concedes that if that's ''not enough'' the patient can be sedated to death ''within several days'' (''Should a sick child be allowed to choose death?'', 21/12). Given the intention of bringing about a quick death to avoid further suffering, there is no indication of how this is different to the patient actively and legally choosing a quicker end - except that there is no patient autonomy, no legal safeguard and no explicit patient consent. It's dishonest and unethical.

The dying patient's choice is always disregarded by opponents to voluntary euthanasia, who are convinced that they know best for the patient (whom they never meet). The rigorous legal safeguards, respect for the patient and open democratic process makes Belgium a better example of human rights than Australia - despite the same level of public support for dying with dignity in both countries.

Janine Truter, The Basin

21 JANUARY 2014

Letter in The Age:

Why the words matter

Leslie Cannold's advocacy for advance healthcare directives (Comment, 20/1) is timely, but how would the average citizen have any idea how to create such an information specific document?

If it is poorly constructed, it will have no value; but if it is carefully constructed, it may save you and your family great pain and suffering. It is not a legal document, but a medical one, couched in careful language that provides specific instructions, in specific circumstances, to doctors (not lawyers).

It is designed to come into force when you can no longer express your wishes. The Dying With Dignity Victoria website has a model that has been endorsed by many doctors.

Dr Rodney Syme, Toorak

25 FEBRUARY 2014

Article in the Sydney Morning Herald:

Looking for the way to go

By Ranjana Srivastava

Many Australians die hooked up to tubes and machines, , the sort of medical intervention that doctors don't want for themselves. How would doctors choose to die?

Very few Australians have given any thought to where they would like to die. Most deaths take place in acute wards of hospitals. Photo: Tanya Lake

I tread quietly past the rows of gravely ill patients in the intensive care unit, avoiding the expectant glances of families. Gently closing the door, I let my eyes adjust to the semi-darkness of the room.

A nurse leans over the patient to wash him. Her fingers move past his closed eyes, around the ventilator tube, down his shrivelled neck, deftly slipping past the intravenous line to his wasted arms.

So why, if doctors are reluctant to embrace invasive or toxic treaments themselves, do so many patients end up receiving them? Why are our ICUs overflowing with patients suffering from an irreversible illness?

His legs are thin, naked, the right one with swollen, red infected tissue. Sophisticated monitors beep as drugs and fluids trickle down multiple lines. The bag of artificial nutrition drips steadily. Charts document the daily fluctuations in his ventilator-assisted life.

His diabetic kidneys have struggled for years. Weakened by past insults, his heart has become even more plaintive of late. His lungs, scarred by a lifetime of smoking, are protesting. And these are just the pre-existing ailments. Days earlier, he had bumped his toe. The minor cut rapidly evolved, with the infection now tracking up the leg.

On the frantic night when he arrived at hospital, he was in septic shock, multiple organs on the verge of failure.

The emergency doctor had to make rapid decisions as I hovered in the background - the physician on call.

''Has he ever spoken about his wishes if he became gravely ill?'' the doctor asks his wife.

''We thought he just had regular old-age conditions,'' she replies, wringing her hands.

''Did your husband ever discuss his views on resuscitation or intensive care?''

''No, we never imagined it would happen to us.''

The emergency doctor looks at me. Stepping forward, I say, ''I'm sorry that this is a bad time, but we should talk about how far to go.''

We walk to a private area but before we reach it, his wife and four children say in unison: ''We want you to do everything, doctor. We want him to live.''

The patient is wheeled to intensive care. ''So what does the family expect us to do?'' the ICU physician asks me.


''You know that isn't exactly meaningful, right?''

''I know he is going to die,'' I say quietly.

''They don't,'' he grimaces. ''They are looking for a miracle that I can't deliver.''

Antibiotics pour in, temporary dialysis is started and blood tests and scans are lined up. Drugs are started and stopped, dials turned up and down. But days go by and nothing changes.

''Doctor, what would you do?'' his family ask me yet again.

''He is not improving, we must reconsider our goals of care.''

''We can't believe he is dying, just like that.''

''He has been unwell for years. This infection was the tipping point.''

''He has spent most of this year in hospital. Why didn't anyone tell us?''

Despite the clearest indication so far that he will not make it, the man's family is paralysed by fear and indecision.

Eventually, the still intubated patient succumbs to cardiac arrest. The end leaves his relatives stunned.

''I just hope I don't die like that,'' his doctor glumly observes. ''That's no way to go; when will we learn?''

Research conducted by Palliative Care Australia has found that very few Australians have given any thought to where they would like to die. But of those who have, the overwhelming majority would prefer to die at home. Less than 20per cent of deaths, however, occur at home. A small proportion take place in hospices and nursing homes, the rest in acute wards of hospitals.

How would doctors - who are so intimately acquainted with the health system - choose to die? In the months after that intubated patient's death, I spoke to dozens of doctors (on condition of anonymity) about how they might view their own care when faced with an irreversible illness with a poor chance of long-term survival.

Practically every doctor rejected the aggressive measures used to keep modern patients alive. Some despaired.

Others felt conflicted. Still others had resigned themselves to what they say seems like a dereliction of their duty to heal in the way they must treat patients.

''Every day I admit patients who have no hope of meaningful recovery,'' says a doctor at a busy metropolitan ICU. ''I hold three or four family meetings a week to broach withdrawal of futile care. Watching the family's devastation, I feel frustrated that nobody ever sat down with them to discuss some reasonably predictable outcomes.''

Another laments: ''If you have crippling emphysema, you will get severe pneumonia. If you have advanced cancer, you will eventually become unwell from it. Patients are reluctant to discuss these things, but so are many doctors.''

Another physician is contemplating a radical switch to palliative care training. ''My most satisfying encounters are increasingly those where I help people to die peacefully.''

Compared to the average patient, doctors have easier access to the best that medical technology and professional expertise can offer. Yet it appears they don't always choose the most aggressive care and are more likely to pursue quality of life when gravely ill.

There is not a great deal of published research about doctors' attitudes to end of life care. And the decisions you speak of may be very different from the ones you end up making. Still, it is worth examining the available evidence.

The Johns Hopkins Precursors Study longitudinally tracks American medical graduating classes from 1948 to 1964. The doctors, who have documented their medical preferences over time, are now 70 to 95 years old.

Of the 999 initial participants, 65 per cent had an advance care directive, far more than the general population. An advance care directive documents a person's wishes for care and intervention in the event of a medical crisis where it is not possible to fully communicate those wishes.

Presented at the mean age of 69 with a hypothetical situation that left them unable to recognise people or speak, the vast majority of doctors chose the ''least aggressive'' interventions available.

This meant forgoing 10 life-sustaining interventions, including CPR (which involves forceful compressions of the chest cavity to restore a heartbeat), mechanical ventilation (being on a respirator), major surgery, and invasive tests (such as blood tests and biopsies), in favour of pain control - even if the duration of life was shortened.

Importantly, while patients often hold an unrealistic belief in the benefit of CPR, doctors mostly decide against it for themselves when advised that their condition is grave and irreversible.

Patients draw their information from television shows that overwhelmingly depict successful resuscitation. But in reality the outcomes of CPR warrant pessimism.

Cardiac arrest commonly occurs in an elderly patient with underlying heart disease and multiple medical problems; here, the rate of CPR success approximates just 5per cent. And TV shows rarely mention the long-term neurological damage, broken, painful ribs, and prolonged suffering that CPR can cause.

The perception gap between doctors and their patients was highlighted recently in the New England Journal of Medicine. Of more than 1000 patients with incurable cancer, 69per cent of lung cancer and 81per cent of bowel cancer patients did not accurately understand that chemotherapy was not being given for a cure. (They were receiving it to temporarily arrest the progression of disease and to manage troublesome symptoms such as pain or breathlessness.)

In an older British study, patients were willing to accept chemotherapy for a far smaller benefit (1per cent) than their cancer doctors and nurses (50 per cent). Overall, significantly more patients than doctors accepted toxic treatment for minimal benefit.

Dr Smithson*, 75, is a retired Melbourne GP. Although in excellent health, he has gone to great lengths to ensure his wishes at the end of life are clear. He has provided his hospital, GP and family with a copy of the document that he shared with me. He specifically requests palliative care if ''grievously ill with no hope of long-term recovery''. Having watched patients and contemporaries die, he harbours no illusions about his mortality.

Drawing a line between ''life preserving and death prolonging'' measures, he terms ''artificial nutrition or hydration via any route to be meddlesome medical intervention''.

He writes: ''It would be an affront to my personal dignity if those responsible for my care were to try to override my wishes.''

Dr Smithson's letter is remarkable for its calm and assertive tone. No doubt, in the chaos of an emergency room, it would provide invaluable direction to his doctors and comfort to his family.

So why, if doctors are reluctant to embrace invasive or toxic treatments themselves, do so many patients end up receiving them? Why are our ICUs overflowing with patients suffering from an irreversible illness?

Much of what a patient understands of illness and prognosis is related to the doctor's ability to communicate.

Open disclosure and truthful prognosticating are familiar catchphrases to modern doctors. But to limit futile care, doctors must accept that a patient's death does not always equate to medical failure. This sentiment plays a large part in the lives of doctors who are not trained to deal with how to let go. Patients deserve meticulous attention to and communication about their reversible illnesses and their pain, physical and psychological. But beyond this, we cannot subvert their fate.

Still, intensive-care doctors observe that no doctor wants to be perceived as giving up. As long as there is another drug, another test, another procedure, doctors feel in control.

A physician with 40 years experience tells me: ''In my frustration, I have taken doctors aside to understand what prevented them from speaking openly to a gravely ill patient on the ward instead of sending them to ICU.

''Some of them have honestly said that they just didn't know how. Doctors are relying on us to fill in those missing critical conversations, but it happens far too late.''

Even if fuelled by an initial sense of altruism, there comes a point when the battle to keep a patient alive at all costs becomes painful, costly, and harmful. It is an ironic paradox of the staggering advances of modern medicine that we now need to learn how to say ''enough''.

Today's patient is typically elderly, overweight, and socially adrift with an unenviable mix of lifestyle-related conditions that have no permanent cure. The best doctors can do is keep complications at bay.

The average patient often feels uninformed and disenfranchised, at the mercy of doctors. But sick doctors also speak of a struggle to receive adequate medical guidance.

Dr Logan* and her husband are both doctors who worked in rural Victoria for decades before he was diagnosed with an aggressive cancer.

She says: ''We found good technicians but it was a challenge to find humane, communicative doctors. We met many doctors who didn't explain things, avoided eye contact, and deliberately ignored my presence and input.''

Having looked after numerous dying cancer patients, the couple was realistic about his prospects but keenly felt the absence of a rapport with their doctors.

''What I really learnt from that experience was to not be afraid to change doctors if you are unhappy with their communication,'' she says. ''It's OK to get a second or third opinion if that's what it takes to find someone you can talk to.''

Six years later, her husband remains well. A trusting relationship with his doctors is the key to their both feeling at ease about the future. ''Obviously, we both understand terminal illness, but I also know that I'd absolutely listen to the doctors if they told me there was no prospect of recovery.''

For doctors and patients, tackling end of life issues is a fraught issue, but as the population ages and chronic illnesses multiply, it is something we will be increasingly forced to think about.

Still, a recent study found that 85 per cent of those surveyed had no plan about what their goals of care at the end of life may be. Three quarters reported not knowing the preferences of their loved ones.

Even well-contemplated decisions can turn out unexpectedly. But this is no excuse for being unprepared.

Death comes to all of us. But when it comes to end of life care, perhaps what separates doctors from their patients is a greater willingness to consider unpalatable healthcare choices, actively seek quality of life, and acknowledge the serious limitations of medicine.

*Names have been changed.
Dr Ranjana Srivastava is a medical oncologist and author. Her book, Dying for a Chat: The Communication Breakdown Between Doctors and Patients won the Australian Human Rights Literature Prize.

13 MARCH 2014

Article in The Age:

A son's plea to Denis Napthine: This is no way for my mother to live

By Julia Medew
Health Editor

Andrew Carnegie and his mother Sue De Ravin, who has been unresponsive for the past 10 years after suffering a stroke. Photo: Wayne Taylor

If it were not for some occasional snores, Sue De Ravin could be dead. The thin woman is lying motionless in a chair with her arms crossed over her chest. Her mouth is resting wide open. Inside, all but a couple of teeth are missing.

I know she never wanted to be here and that if she had any control at all she would stop eating.

For more than four years, Mrs De Ravin has been lying like this in a nursing home bed totally incontinent and with her knees bent rigidly together. During that time, the former nurse has barely opened her blue eyes and has not responded to people’s voices or requests to squeeze their hands.

Sue De Ravin in the 1960s while working in the Myer advertising department.

Like thousands of other Australians living through the final stage of dementia, there is no way out. Every day, the 78-year-old is sedated with anti-psychotic medication for up to 20 hours before being roused by carers so they can lift her with a mechanical hoist from her bed into a chair to eat. She cannot ask for food, but opens her mouth like a baby bird if it is presented to her lips.

Her son, Andrew Carnegie, says the only other signs of life in his mother are reflex movements and moans in response to pain and the occasional raised eyebrow when her favourite French perfume is sprayed on her. While it is impossible to know how aware she is of her situation, he doubts her level of consciousness.

"I know she never wanted to be here and that if she had any control at all she would stop eating. So by deduction, I know she is no longer with us," he says.

"But she breathes, her hair is trimmed, she is washed and she eats on demand, and another day, another month and another year passes."

Mr Carnegie is telling his mother’s story because he is frustrated she had no option to peacefully end her life in circumstances she had previously deemed intolerable.

Despite writing a "living will" that would prevent her from being resuscitated in the event of a cardiac arrest or being given antibiotics to treat an infection, Victorian law does not allow Mrs De Ravin or her power of medical attorney to order anything that would hasten or cause her death in her current state.

With about 280,000 Australians suffering from dementia, her story raises the question of whether people should be able to write a specific directive about how they should be treated if they find themselves in a similar position, including whether they should be spoon fed.

At the moment, about 7 per cent of Australians are believed to have an advance directive but in Victoria any refusal of treatment can apply only to a current illness, not a possible future illness, limiting their scope and utility. It is also unclear if they apply to issues such as feeding, which may be seen as a non-medical human right if a person is still able to swallow.

In February 2012, the Victorian Law Reform Commission recommended the state government change its laws to allow people to refuse treatment for possible future illnesses to bring Victoria into line with five other jurisdictions that have such legislation. The Napthine government has not responded to the commission's report, but a spokesman said on Wednesday that it planned to release a new advance-care planning strategy.

Mr Carnegie, a lawyer, says that after his mother was diagnosed with visual dementia following a series of mini-strokes in her mid-60s, she made it very clear that she did not want to live with the disease.

In her more lucid moments, he says, the member of pro-euthanasia group Dying with Dignity talked with her family about travelling to Switzerland's Dignitas clinic to die, but her window to meet the criteria had closed. She also contemplated suicide but decided the stigma was too great for her family to bear.

Her husband, John De Ravin, says: ''Sue always said that if she ended up in a nursing home, she would knock herself off.

''I never quite understood that, but having seen what she has been through for the last eight years, I can understand why now.

''I wouldn't want her to die if there was any life in her, but there's not.''

In a personal appeal to Dr Napthine, a veterinarian, Mr Carnegie said it made him angry to hear people talking about animal rights when people could not choose a peaceful, dignified death when they were terminally ill or had no quality of life. ''Premier, I sincerely hope that you can make a difference, and become a leader on this issue. It is never going to be a national issue and we need a leader to take it on. Because as far as I can see it, our laws leave your constituents but one blunt and very real choice, which will always be ill-timed - that is a very undignified suicide in a hotel room or garden shed,'' Mr Carnegie said.

Mr Carnegie said he had found his mother's condition so distressing at times that he had even contemplated ending her life for her.

''I have thought about a mercy-style killing, but I just couldn't go through with it. But I'm sure it must have happened. That is a very dark place for people to go and by not giving people a legal framework, we're pushing people into these places. It's not right,'' he said.

Dr Rodney Syme, the former president of Dying with Dignity Victoria, urged the government to consider new laws for advance directives, saying the lack of clarity around their practical effect was a major defect. He also called for a debate about whether people should be able to refuse spoon feeding before finding themselves in the final stage of dementia.

''People with terminal dementia end their lives in a protracted sub-infantile state, unable to communicate, incontinent, immobile and unable to feed themselves. Even a very small infant shows interaction with their environment and you can see them smile, so it's even worse than being an infant.

''I find it hard to believe that anyone could see Susan De Ravin and say, 'That's fine, I'd like my life to end like that', and yet that's what our society both accepts and ignores. This is what we are tolerating and co-operating with.''

For help or information visit, call Suicide Helpline Victoria on 1300 651 251, or Lifeline on 131 114.

14 MARCH 2014

Letters in The Age:

Failing the dying and failing their loved ones

Your article ''No Way To Live'' (13/3) brought back memories of my own mother and her passing four years ago, aged 87. She was an intelligent, dignified, modest, loving mother and she ended her days in a nursing home unable to walk, wash, toilet without help - exactly what she had requested of us, her children, to make sure never happened. When your mother, after a couple of strokes, a fall that broke her ankle and weeks in rehabilitation says to you, ''Help me,'' and you know exactly what she means, but you cannot because of the law, you feel totally helpless. In her hour of need, she was failed. We, her children, were failed too. Her slow and painful decline will haunt me forever, as I still wake in the night thinking of how unnecessarily cruel her death was.

Kate Read, Canterbury

Treatment goes beyond indignity

Care directives signed by a GP, and setting in place a medical power of attorney, both of which my husband and I have arranged, as well as discussing our wishes with family, we believe have been a good place to start in ensuring some control over our end-of-life circumstances. However, as your story revealed, these things alone do not ensure our wishes will be carried out. Rather, it appears certain that in the event of permanent incapacity that results in the inability to make known our wishes to be allowed to die in such circumstances, we will be kept alive by unwanted and abhorrent medical intervention - what amounts to force feeding. Allowing someone with permanent incapacity with no chance of recovery to die is very different from consciously seeking euthanasia. Not to be allowed to die naturally in such circumstances, surely goes beyond mere indignity and into the realms of inhumane behaviour.

In asking whether there is any benefit in keeping anyone in such circumstances alive, the following seem self-evident: there is no discernible benefit to the patient, and there is ongoing anguish for relatives who know the wishes of their loved ones not to have to endure such indignity, and there is the huge financial cost of such pointless medical intervention to the community. Our society seems so afraid of death that it does not want to deal with this issue. The laws need to be reviewed and new laws made.

Lesley Cowie, Blackburn

The value of life remains

I was saddened to read about Sue De Ravin. It is never easy for the family when a loved one has advanced dementia. While her son, Andrew Carnegie, believes his mother is ''no longer with us'', I believe Mrs De Ravin remains the same, equally valued person despite the profound changes in her cognitive and other functions. She is not a shell. She is a human being who is now profoundly disabled. Your report does not suggest that Mrs De Ravin is suffering. When spoon fed, she continues to eat. Would it be right to stop feeding her? With many other people, I would be distressed if we stopped feeding disabled people so as to cause their death. Should someone with early dementia be able to refuse spoon-feeding for later when they have advanced dementia? This is not as straightforward as it might appear. Why should Mrs De Ravin's past wishes end her life? It is heartening to see that her family continue to care for her.

Kevin McGovern, Caroline Chisholm Centre for Health Ethics, East Melbourne

Convenience for the living

You can put emotive stories with memorable pictures on the front page, but the answer is still ''no''. Euthanasia is the slippery slope to easing ''grandma'' out, because it's easier for all.

Kevin Rugg, Black Rock

15 MARCH 2014

Letters in The Age:

If that's not suffering …

I was shocked to read Kevin McGovern's dismissal of Sue De Ravin's situation, particularly the claim that the ''report did not suggest that [she] is suffering'' (Letters, 14/3). Lying in bed for four years with advanced-stage dementia, sedated with anti-psychotics and moaning in pain sounds like suffering to me.

Siobhan Simper, Warrnambool

True to her beliefs

As the niece of Sue De Ravin I found Kevin Rugg's letter (14/3) judgmental and cynical. Sue joined the Dying with Dignity group when early symptoms of her dementia emerged, indicating the strength of her beliefs. Unfortunately at that time there were no advanced care directives and still no legal frameworks to ensure her wishes to die with dignity were respected. Living this way is not what Sue wanted.

Diana Yallop, Surrey Hills

Taking the initiative

No, Kevin Rugg, euthanasia is not about ''easing grandma out''. Rather, it is based on a decision made by the sufferers themselves while aware of what it was they were asking for: an end to pain, a dignified death. In the Netherlands people, often in consultation with their doctor, may make a ''forward-looking euthanasia request'' or advance directive. This is in case something should befall them, such as a stroke, that could render them incapable of voicing this request. Such a request is legally recognised as a legitimate request for euthanasia. Euthanasia is something about which people have made a conscious decision; it is not ''done'' to people. To derive from the word euthanasia the verb ''to euthanase'', used sentimentally and euphemistically when a pet is put down, is misleading. It is tragically misleading if it engenders the idea that others, prompted by ''convenience'', can decide to get rid of us.

Janna Hilbrink, Northcote

16 MARCH 2014

Article in The Age:

Death with dignity reform

By Farrah Tomazin

Victorians will be able to instruct their doctors to not give them life-prolonging treatment for possible future illnesses, under a state government push to allow people to die with dignity.

As a condition of hospital funding, patients will now be encouraged to create ''advance care plans'' setting out the kind of medical care they would want in the event of illnesses such as dementia, cancer or brain damage.

The directives would give people a greater say on how they want to die - before they lose their decision-making capacity - and provide clinicians with guidance to implement their patients' wishes.

''It's about providing the support for people to make decisions they believe are important,'' said Health Minister David Davis. ''This is about their own steps, and to make choices ahead of time, where they could say: well this is a point where I would want certain treatment refused, or I want them continued. Either is relevant.''

At present, about 7 per cent of Australians are believed to have an advance care plan, but in Victoria, any refusal of treatment can apply only to a current illness, not a possible future problem. The government's strategy, to be announced on Sunday, will take into account future conditions, and will also be tied to hospital funding to ensure such plans are embedded into clinical practice.

For instance, a patient would be able to give their doctor a written instruction that, in the event of rapidly deteriorating health, they would accept intravenous antibiotics but would not want resuscitation, or a transfer to intensive care.

They could also use the advance care plan to appoint a substitute decision-maker. Euthanasia or assisted suicide, however, will remain illegal.

While the move stops short of Victorian Law Reform Commission recommendations to make instructional directives enshrined in law, many have welcomed the strategy as an important shift in clinical practice.

‘‘We think it’s a very positive development, as it’s very important for people to be having conversations about end-of-life care,’’ said John Chesterman, policy manager for the Office of the Public Advocate.

Barwon Health intensive care specialist Charlie Corke said it was impossible for doctors and family members to make good treatment decisions for patients unless their concerns and wishes were clearly understood.

‘‘It is difficult to think rationally in a crisis. Serious disease may impair clear thinking, and quite often people who are very sick are unconscious, so cannot say anything at all. It is vital that we all plan before a medical crisis, when there is no pressure and plenty of time,’’ he said.

While some health services, such as the Austin Hospital, already provide advance care planning, the government has been under growing pressure to create greater clarity around their practical effects.

Associate Professor Bill Silvester, director of the Austin Hospital’s Respecting Patient Choices program, said there had been many cases of doctors giving patients treatment they may not have wanted because the patient had lost their ability to decide for themselves.

The new strategy would allow people to be better protected in future, he said, and train doctors and nurses to talk to patients while they still had the capacity to work out what they wanted.

He said advance care planning through the Respecting Patient Choices program had also reduced the number of patients who may have otherwise sought euthanasia.

‘‘The reason people look at [euthanasia] is because they don’t trust that their voice will be heard. This policy is going to be a great step forward for us to deliver a better quality of care to patients at their end of life,’’ Professor Silvester said.

17 MARCH 2014

Letters in The Age:

A place for character

Lesley Cowie's excellent letter (14/3) encapsulates the dilemma often facing medical practitioners. Always fearful of euthanasia, they may seem incapable of allowing those with little chance of recovery to die. The current default position, in and out of hospital, is always to resuscitate. Yet despite patients' advance directives, doctors may find they are not legally binding. Virtue ethics has another approach. If doctors were to behave according to their character, not in response to what they feel they ought to do, much human indignity and pointless medical intervention might be avoided.

Simon Bower, Richmond

Accept the inevitable

If I took my elderly dog who had a broken pelvis and hip to a vet, and the dog was diagnosed as unlikely to survive, and I insisted he be kept pain-free but conscious enough to be aware of when I or others were in the room, offered food and water that the pain medication rendered unpalatable, and then waited for him to die ''naturally'', would that be deemed cruel? Dying ''naturally'' in this instance means dying of starvation and dehydration.

It didn't happen to my dog. It happened to my mother after years of dementia. It took her 13 days to die. Who did the protracted manner of her dying serve? Not her. Not me. Her suffering has finally ended, mine hasn't. I still see her ruined, emaciated form every time I think of her, and I ask again: who did the manner of her dying serve? When do we grow up as a society and accept that not only is death inevitable, it is natural and right?

Anna Rosenberg, Rosebud West

1 APRIL 2014

Article in the Sydney Morning Herald:

We need a new word for suicide

By Philip Nitschke
Illustration: Kerrie Leishman

It might be in the fine print but one of the first things the Australian Bureau of Statistics warns upon the release of the latest suicide statistics is that ''care must be taken'' in their interpretation.

While some journalists heed the warning, there will always be those who do not. After all, the rate at which we kill ourselves cannot but make a sensational news story.

Yet the moral panic that ensues each time newly minted suicide rates are published is far from helpful. Yes, of course there are deaths about which the community should be concerned. These groups include those who are young and those who are mentally ill – the latter of which includes anyone who is so depressed that they have no capacity to decide on anything, let alone whether they should live or die.

However, one question that remains unaddressed whenever the statistics are published is whether there are other deaths hidden in the mortality dataset that, dare I say, should be looked at a bit harder – suicides that are anything but irrational acts, suicides that were carried out sensibly, with forethought and planning, and, quite often, with the full support of the person’s family and loved ones.

The question is, should society be alarmed and dismayed by this? Last year Exit (my organisation) was contacted by the Victorian Coroner's office seeking a new expression for the increasing number of rational suicides that it was dealing with – that is, voluntary euthanasia suicides.

For too long medicine has conveniently sought to ground suicide in a range of psychiatric indicators. If a person kills themself, the medical literature has authoritatively argued that they were not, by definition, acting rationally. Delusional perhaps. Depressed definitely.

In this respect studies rarely acknowledge the idea that suicide can be a rational, reasonable response to an intolerable life.

Working in the field of voluntary euthanasia, this trend has long been obvious. Getting my medical colleagues to entertain the apparently dangerous idea that suicide can be a rational act has become an important part of my professional work. However, try as I might, the medical establishment has long held the line that only a very, very small proportion of suicides – maybe 1 or 2 per cent – are free of mental illness. That is, until now.

Last month the Canadian Journal of Psychiatry changed this. A chink was made in the armour that frames depression and the suicide prevention debate.

In an article titled ''Suicide: Rationality and Responsibility for Life'', Canadian academic psychiatrist Angela Ho has struck out. Yes, two-thirds of suicides may be driven by an unsound mind but a significant minority are not.

Rather, these suicides are rational.

Following on, these suicides are not ''bad'' and barriers should not be placed in front of those who pursue this course of action.

As someone who deals daily with people who are so seriously ill or so old and frail that the option of a peaceful death is a very real consideration, I welcome the Canadian ‘‘breakthrough’’.

Surely this would allow me to speak more openly about the hidden face of suicide, without those in the suicide prevention and pro-life industries howling me down. How naive I was.

In February, shortly before the Canadian article appeared, I was invited to give a breakfast address to the staff of the Sir Charles Gairdner Hospital in Perth. On the morning in question, the room was full of medicos, many from other hospitals coming along to listen and participate in the discussion.

As with most talks of this nature, the assumption was that Chatham House rules would apply – we would not report on the proceedings. We would all participate in friendly, collegial, intellectual debate for its own sake. Audience and speaker alike should feel free to engage and think out loud.

As talks go, the session was lively, the coffee and croissants popular. Little did I imagine that two weeks later my ideas about rational suicide in the context of old age, frailty and serious illness would form the basis of a complaint by the head of pain management of the CGH against me to the Medical Board of Australia. Again my medical registration is in peril.

My apparent transgression was that I dared to suggest that suicide is not always and necessarily the act of a person who does not know what they are doing or why they are doing it.

More than this. I retold the story of Valerie Purcell. Valerie was the last of my four patients who used the Northern Territory’s Rights of the Terminally Ill Act back in 1996.

Valerie had been the poster girl of successful, modern palliative care. While her cancer was still lethal, in its final stages she had few symptoms. Valerie’s major complaint was that sitting at home waiting for family to visit, waiting to die, was not living. Nor was not being able to play golf.

That was why Valerie came to Darwin from Sydney to use the Rights of the Terminally Ill (ROTI) law. Valerie chose suicide, rationally. To dismiss her as someone ''who wanted to die because she couldn’t play golf'' is to seriously miss the point. To seek my medical deregistration because I was apparently ''normalising suicide'' by discussing the details of her death with medical colleagues, more so.

Of course in 2014, the over-80s are killing themselves at a higher rate than any other age group. These self-directed octogenarians are voting with their feet. They are exercising their minds and free will to control their passing; rather than waiting for some institutionalised ''natural'' alternative. Surely these are the suicide statistics our society should be proud of?

Dr Philip Nitschke is the author of the banned Peaceful Pill Handbook and a Western Australia Senate candidate for the Voluntary Euthanasia Party.

2 APRIL 2014

Letters in The Age:

It is not criminal to end suffering with suicide

"We shouldn't be proud of rational suicide, but we should accept it as normal and necessary in many cases." Photo: Scott Hannaford

Dr Philip Nitschke advocates de-stigmatising "rational" suicide ("We need a new word for suicide", April 2). He cites a Canadian study in support of his proposal. In Australia’s case he notes the increasing incidence of Australia’s over-80s who are "rationally" suiciding. He concludes his article by posing the rhetorical question, "surely these are suicide statistics of which our society should be proud".

I do not agree that we should be "proud" of this statistic regarding rational suicides. We should be ashamed of it because of the way in which these people are forced to conduct themselves. Rational suicide or assisted euthanasia still cannot be legally undertaken anywhere in Australia. As a result, many rational suicide deaths are amateurish, painful and undignified. Surviving loved ones who acted mercifully in assisting suicides, may become convicted criminals. It is time to end this.

We shouldn’t be "proud" of rational suicide, but we should accept it as normal and necessary in many cases. With proper safeguards and medical supervision, assisted suicide should be made legal throughout Australia. Ancient superstition regarding the inviolability of life should be set aside in favour of mercy, humanity and rationality.

Geoff Black Caves Beach

Dr Philip Nitschke argues that suicide can be rational and reasonable: rational in so far as the person knows what they are doing and why, reasonable in so far as the person has nothing to live for and is just waiting to die.

However, that does not make it moral. What is rational and reasonable is not necessarily morally right.

Moreover, what can look like a rational and reasonable decision today can, with the benefit of hindsight, turn out to have been very unwise and ill-advised.

In any case there is little room, if any, for error.

Mark Porter New Lambton

I am certainly proud that some who are "seriously ill or old and frail" are "exercising their free will" in choosing a peaceful death. Congratulations and thanks to Dr Philip Nitschke for risking deregistration in his support for voluntary euthanasia.

Pamela Fitzgerald Potts Point

There is neither reason nor responsibility in the short-sighted selfishness of so-called "rational" suicide being touted in Dr Philip Nitschke’s article. Uncritical support for "private" choices involving medicalised killing has extreme potential for very nasty, very public consequences.

Should Nitschke succeed in establishing "rational suicide", it has irresponsible potential to alter most unjustly our present social environment in which the old, the frail and the seriously ill are entitled unconditionally to whatever palliative care, financial and other resources are necessary.

Social environmental economists might recognise in the making here a tragedy of the commons. Rationalising medical killing of the old, the frail and the seriously ill sets a socially engineered trap, in which individual interests freely and legally gain access to a public resource (a health care system that provides unconditional specialised care for the vulnerable) and proceed to change drastically the ethos of that public resource – to change it from unconditional palliative care to optional care together with the option of medically "assisted" suicide.

A tragedy of the commons will unfold as patients are pressured subtly to accept the cheaper swifter option. This will lead eventually to serious depletion of the shared resource – the end of a truly universal, unconditional and beneficent system of care for the most vulnerable. A gradual reduction of specialised clinics, hospices, palliative care resources and research dedicated to the needs of the aged, the frail and the terminally ill is therefore a typical "externality" – i.e., the unintended and negative consequence of private decisions that ends up affecting everyone. Inexorably, more research resources, more clinics, more medical personnel will be directed towards ktenology, the science of killing. We should not venture down that road.

Rita Joseph Hackett (ACT)

So Dr Philip Nitschke spotted the elephant in the room and, worse yet, exposed the myth. You don’t have to be a nutter to depart this world voluntarily. Rational people do it all the time.

Bill Doyle Lorn

4 APRIL 2014

Letters in The Age:

Call it what it is

Philip Nitschke's article on ''good'' and ''bad'' suicides (Age Online, 2/4) fails to address the huge impact on society should he achieve his goal of legal voluntary euthanasia.

Some time ago, a couple in Sydney used one of Nitschke's methods to end their lives. They were elderly, but not suffering from any apparent illness. A year later, a doctor in the area told me of the effect on his patients who knew the couple. Many had formerly been coping well with the infirmities and inconveniences of old age, but now wanted to ''throw in the towel''.

Suicide by any other name will still be suicide. If it is normalised or legitimised in any form, the result could be a disastrous lowering of morale among angst-ridden teens, the elderly, and anyone suffering depression.

Roslyn Phillips, Tea Tree Gully, SA

A peaceful death

Whatever one's thoughts about end-of-life choices, Philip Nitschke's article was about trying to find new terminology. The point is how to distinguish between the sad suicides of the young and mentally ill, which should be prevented, and the rational actions of people who have good reason not to go on living.

What about calling the latter group ''leavetakers'' and their action ''leavetaking''? This might lead to them being accorded respect and assistance, so that they could leave calmly and peacefully, with company if they chose, instead of having to resort to lonely, unhappy deaths by violent or other unpleasant means.

Anne Riddell, Mount Martha

28 APRIL 2014

Report in The Age:

Doctor admits giving dying man the drugs to end his life

By Julia Medew
Health Editor

Finding courage to fight for the right to die

Dr Rodney Syme, a voluntary euthanasia campaigner, talks about the reasons behind his decision to give a dying man drugs to end his life.

• Autoplay ONOFF • Video feedback • Video settings

Voluntary euthanasia campaigner Dr Rodney Syme has admitted giving a dying man the lethal drug Nembutal two weeks before he killed himself with it at his Point Lonsdale home.

In a disclosure that could trigger a test case for physician-assisted suicide in Victoria, Dr Syme said he gave Steve Guest Nembutal while he was dying from oesophageal cancer in July 2005, because he was suffering intolerable physical and psychological pain and needed control over the end of his life.

Two weeks later, Mr Guest, 58, died from an overdose of Nembutal, the barbiturate used by veterinarians to kill animals and which is also being increasingly traded on the black market in Australia.

Prepared to 'out' himself in order to instigate a court case: Voluntary euthanasia campaigner Dr Rodney Syme. Photo: Angela Wylie

In Victoria, it is a criminal offence to incite, aid or abet a suicide – with a maximum penalty of five years' jail. Dr Syme, 78, said after watching state Parliaments reject 16 euthanasia bills over the past 20 years he was ready to "out" himself and be charged over Mr Guest's death because a court case could set a useful legal precedent for doctors who are too scared to help terminally ill people end their own lives.

"I just believe passionately that there are too many people suffering too much not to try a little bit harder to change things, and a lot of these things, it seems, will only be changed in a court decision, so bring it on," said the urologist and vice-president of Dying with Dignity Victoria.

''I said in 1992 that if the law wasn't changed in 10 years I would create a court challenge and here we are 12 years later and it still hasn't happened. It was beginning to get to me. I'd think, where is my courage?''

Before he died, Mr Guest spoke on radio about his illness and the fact that he wanted to die a peaceful, dignified death at the time of his choosing. He also made it clear that he intended to end his own life.

After Mr Guest’s death, Dr Syme told various media outlets that he had given him ‘‘information about barbiturates’’ and ‘‘medication’’ which prompted two police interviews in 2005 and 2008. But Dr Syme said he never answered questions about whether he had given Mr Guest Nembutal because it would have given police ''the full hand' to prosecute him.

''I just wasn't prepared, I didn't have the courage to take it on at that particular time,'' he said.

No Victorian doctor has been charged with assisting a suicide in the past 50 years, but a Perth urologist Daryl Stephens was charged with murder in 2000 after allegedly helping a woman with terminal kidney cancer end her life in a hospice. A jury found him not guilty.

Dr Syme said that when he met Mr Guest, he could not swallow and was starving to death. His pain was somewhat relieved by morphine, but this meant he was constantly dopey and nauseous. Dr Syme said he was terrified of being admitted to a hospital or hospice for the rest of his life.

‘‘Steve had significant physical suffering, but even more intolerable was his psychological and existential suffering. He had a profound sense of loss of control over his life ... He had a primal fear, felt by many dying people, which can consume the precious time around the end of life,’’ Dr Syme said in a statement provided exclusively to Fairfax Media.

‘‘Relief of this often unrecognised psychological and existential suffering is one of the most important palliative actions a doctor can take, and it is best achieved by giving that person control over the end of their life.’’

Dr Syme said after talking with Mr Guest for two hours on July 12, 2005, he gave him the drug Nembutal. While he could foresee that he might end his life with the drug, Dr Syme said his primary intention was to improve his mental health and allow him to do what he wanted to do in the last days of his life.

‘‘I did advise and support Steve Guest in his terminal illness, and gave him medication (Nembutal) which was remarkably effective palliation as he gained the strength to advocate for law reform over the subsequent two weeks,’’ Dr Syme said in the statement.

Paul Russell, executive director of Hope – Preventing Euthanasia and Assisted Suicide, said he hoped Dr Syme would be prosecuted to maintain and uphold the law which is designed to protect vulnerable people.

Mr Russell said there were many aspects of this case that should be scrutinised, including where Dr Syme was getting Nembutal from, and whether he knew enough about Mr Guest to consult with him on end-of-life matters instead of Mr Guest's own regular doctor. He also questioned how Dr Syme assessed people's mental health in such circumstances.

‘‘People can appear to be quite rational when perhaps they are not,’’ he said.

For help or information call Suicide Helpline Victoria on 1300 651 251 or Lifeline on 131 114, or visit

28 APRIL 2014

Report in the Sydney Morning Herald:

Doctor challenges euthanasia law that calls mercy a crime

By Julia Medew
Health Editor

For nine years, Dr Rodney Syme has kept his silence about the lethal drug he gave to a dying man. Now he is speaking out and prepared to face the legal consequences.

• Finding courage to fight for the right to die

Dr Rodney Syme, a voluntary euthanasia campaigner, talks about the reasons behind his decision to give a dying man drugs to end his life.

• Autoplay ONOFF • Video feedback • Video settings

Rodney Syme never met his grandfather George, but he feels he has lived much of his life in the old man's gaze. George Syme risked his safety to tend to the wounded at Gallipoli during the First World War. Now Rodney Syme, a respected surgeon, is looking to his forebear's courage and leadership as he speaks out about potentially breaking the law for a just cause.

When he was a child, Syme says he often faced a portrait of Sir George hanging halfway down the stairs of his Malvern home. ''The eyes seemed to follow you wherever you went,'' he says. ''I always thought this guy has got his eyes on me.''

George, a man of few words known as ''Silent Syme'', was 54 when he left his established medical practice and family to volunteer at Gallipoli, partly to encourage other doctors to follow him. He worked as a surgeon anchored on the hospital ship Gascon before a cut in his hand caused a life-threatening infection that sent him home. He was knighted when he retired in 1924.

Rodney Syme at his home in Toorak: "There are too many people suffering too much".

Rodney Syme has often marvelled at his grandfather's bravery and he now feels George weighing on his conscience more than ever. For while both dedicated much of their careers to saving people's lives, the grandson has also made it his life's work to help people end their lives.

For decades, Syme has carefully been revealing the details of deaths he has been involved in to highlight the need for voluntary euthanasia. At times, his increasingly daring statements about providing people with ''control over the end of their life'' and ''medication'' with little further explanation have prompted police interviews and coronial inquests. But to date, the urologist has not been charged with any crime.

That may be about to change. After several calculated flirtations with the law, Syme believes there is a ''benign conspiracy'' in Victoria among police, coroners, prosecutors and the government to not charge doctors for helping people end their lives. He senses that they either privately don't believe in the law or think they won't win a case, particularly if it is levelled against a respected doctor who helped someone die a peaceful, dignified death.

'I will die now in peace and at peace with myself, I am calm' Steve Guest, shortly before taking the drug.

Up until now, this apparent pact has suited Syme in some ways. Despite his provocations, he has never really wanted the stress of a Supreme Court trial, let alone a conviction and jail time. But as Syme approaches the end of his life, he is losing patience and he wants to test the law in the hope it will set a legal precedent. To do that, he is now prepared to reveal more about what he did to help one man achieve the death he wanted nine years ago.

He has been inspired to speak out - and risk prosecution - by the example of his grandfather, whose bravery he contemplates each year around Anzac Day. ''I'd think, 'Where is my courage?''' he says.

Eventually he felt that his conscience could not allow him to remain silent any longer. ''I just believe passionately that there are too many people suffering too much not to try a little bit harder to change things … And a lot of these things it seems will only be changed in a court decision, so bring it on.''

On a wintry Monday morning in 2005, Syme was driving his car when he heard the tail-end of a conversation on ABC radio about a man who had called in to say he was dying and wanted to end his life.

Later that day, Syme received a phone call from Steve Guest - the same man who had called talkback radio that morning. Guest, a former journalist and media adviser to the Cain government, said he needed help. In a phone call that lasted about 30 minutes, Guest told Syme that terminal oesophageal cancer had stolen his ability to swallow, think and live the life he had cherished for 58 years.

''It was clear he had a very serious problem,'' Syme says of the conversation. ''He was down in Point Lonsdale and was too ill to come to Melbourne, so I said, 'I'll come down and see you.' ''

The next day, Syme climbed into his four-wheel-drive and headed down the Princes Highway to Guest's house. In case he needed it, he packed a lethal dose of Nembutal, a powerful drug regularly used by veterinarians to put animals down.

When he arrived, Syme found a gaunt man in bed whose disease had nearly halved him in size from 80 kilograms to 45. He had a feeding tube in his stomach and pain in his chest that was reasonably well controlled by large doses of morphine, but the relief came at a cost. He was constantly nauseous, constipated and dopey when he wished to be alert and creative.

Guest appeared exhausted. He could barely walk short distances, making him feel like a prisoner in his home. There were friends, family members and an excellent GP visiting him regularly, but Guest knew he could not stay in his home much longer.

''He had a terrible fear about what was going to happen to him,'' Syme says. ''It was completely destroying any quality of life he might have had. He had what I call existential suffering. He was already in an existence that was arguably intolerable and he was facing being transposed into a nursing home, hospital or hospice where he would finish up his life in circumstances that were just not acceptable to him.''

Syme advised Guest that he could be referred to a palliative care facility where he could legally be put to sleep with strong sedative and narcotic drugs. Without hydration, he would be dead within days. But Guest was adamant he did not want this, mainly because he feared submitting himself to people who might prolong his life when he had had enough.

During this two-hour meeting, Guest told Syme he planned to take his own life and wanted access to a fatal dose of Nembutal so he could die when the time was right. Guest wanted to own the precious last days of his life. Towards the end of their encounter, Syme says he made a decision that might yet affect his own end-of-life prospects.

''My opinion was that if I gave him control over the end of his life, I would be giving him the most powerful palliative treatment he could have … So after a long and in-depth conversation, I said that that is what I would do for him and I gave him the medication. I gave him Nembutal because that is the medication beyond any other that can provide for a very peaceful death.''

Like many others before him, Guest's physical demeanour changed immediately after taking possession of the drug, Syme says. His shoulders were no longer slumped, his frown eased and there was more light in his eyes.

''It is a remarkable phenomenon. It just makes you aware of how deep that psychological suffering is,'' Syme says. By all accounts, Guest's mood improved dramatically over the following two weeks. He spent hours talking to journalists and particularly ABC radio about his illness and desire for voluntary euthanasia to be legalised.

Free from the terror he had felt about his looming death, Guest even joked privately about the music he might play when he died. He told ABC radio presenter Jon Faine that while he liked the idea of some David Bromberg, the jazz music might be too much of a ''foot tapper''.

Syme continued to call Guest several times a week to check on his health and says he visited him again two weeks after their first meeting. There was a moment he will always remember. As Guest moved to get out of bed to go to the toilet at one point, a thin cotton gown he was wearing billowed off him, revealing his emaciated naked body.

''He was virtually skin and bone,'' Syme says.

That night, after Syme left, Guest told his brothers, Andrew and John, that he needed help to walk into his bedroom. Andrew obliged but when he got into his bed, Guest said he wanted to be left alone. A short time later, he called both of his brothers to come back into his room.

''He asked us to hold his hand and within a couple of minutes he had drifted off to sleep,'' John Guest says of the moment he and his brother Andrew had been anticipating for several days.

''We said our farewells and I kissed him, then went back to the living room and filled in time. Half an hour later, about 9.30pm, we checked on him and as far as either of us could tell he was dead.''

John says his brother's death was quiet and peaceful and that he was surprised by how well he slept after watching him finally slip away.

After Guest's death, Syme told the media on various occasions that he had given Guest advice about ''control over the end of his life'' and ''information about barbiturates''. He also said he had provided Guest with medication but he never specified what that medication was.

About six months later, Syme got a call from a policeman who wanted to interview him about Guest. Syme agreed and met the officer from a criminal investigation unit at police headquarters in St Kilda Road. The officer, who seemed almost apologetic, wanted to know if everything Syme had already said about Guest was true. Syme stood by all his public statements, but refused to answer a question about whether he had given him Nembutal. In 2008, the police called Syme to again ask him if he had given Guest Nembutal but he refused to answer their question.

He later heard from John Guest that he was unlikely to be charged.

''The same police member rang John Guest and said the coroner had asked the Director of Public Prosecutions if he wanted to prosecute and the DPP said no, so the coroner went ahead with an investigation.''

Coroner Paresa Spanos' report on Guest's death noted Rodney Syme's interaction with him and the fact Guest had died from an overdose of Nembutal, but she added: ''Despite thorough investigation by the police, the precise source of the Nembutal used by Mr Guest, and how he was able to obtain it was not able to be ascertained. Nor were police able to ascertain the details of the advice given by Dr Syme to Mr Guest.''

Rodney Syme has lived a privileged life, but in many ways he is a humble man. He lives in Toorak but loves to camp. His fridge is covered with photos of his children and grandchildren. When I arrive at his home, he is wearing ugg boots and looks relaxed about what he is going to tell me.

Despite working in a field that is notorious for big egos, Syme does not seem to revel in the power he has to dramatically alter the course of people's lives. He tells me he consults an average of one to two patients each week seeking help with end-of-life matters and does not charge them for his expertise.

He speaks slowly and precisely and never seems to waste a word. Like his grandfather, you sense that he says only what is needed, and that he is clear about what that is.

But is helping terminally ill people die the work of a good doctor or a criminal? Under the Victorian Crimes Act, it is illegal to incite, aid or abet a suicide and the maximum penalty for such an offence is five years' jail.

After discussing his plans to talk more about Steve Guest's death with two senior barristers recently, Syme says he has arguably broken Victorian law and could well be charged. While he values his freedom, he is so frustrated by the glacial pace of the euthanasia debate and the 16 failed attempts by state politicians to introduce a new law that he would now relish the opportunity to stand before a jury to be judged.

He proffers the example of abortion in Victoria as a previously illegal medical practice that was partially decriminalised in a court case in which a judge ruled it to be reasonable.

A Victorian precedent would be timely in Australia because an expensive black market for Nembutal is growing at a similar rate to the ageing population. Only last week, police raided several homes in Western Australia to seize Nembutal that they suspected had been illegally imported.

''Desperate people are doing desperate things, without any effective guidance regarding this medication, dosage or indications,'' he says.

Syme says Steve Guest could be the man who helps him change that. He says Guest was a courageous person who could have easily kept his story quiet, but chose not to.

Shortly before he took his life, Guest sat down to record a statement for Syme to thank him for his help. He would have written a letter, but says he was too knackered to pick up a pen.

In the recording, Guest says possessing Nembutal relieved his fear of a ''prolonged and painful and undignified death'', improving his mental health immeasurably. ''In one way or another, I will die pretty soon, but I will die now in peace and at peace with myself. I am calm,'' he said.

Syme does not know what his grandfather would have thought about his treatment of Guest or the fact he is now offering himself up to the police. But he says: ''I hope my grandfather would be a little proud of me at this particular moment. I am proud of him.''

For help or information call Suicide Helpline Victoria on 1300 651 251 or Lifeline on 131 114, or visit

28 APRIL 2014

Report in The Age online:

Police investigating doctor who gave dying man drugs

By Julia Medew
Health Editor

April 28, 2014 - 6:06PM

Victorian police are investigating a Melbourne doctor’s confession that he gave a dying man a lethal drug shortly before the man killed himself with it in 2005.

Just hours after euthanasia advocate Dr Rodney Syme admitted on Monday morning that he had given Steve Guest Nembutal while he was dying from oesophageal cancer, a spokeswoman for Victoria Police said the homicide squad had reopened its investigation into the case.

“The Homicide Squad has reopened the investigation into the death of Stephen Guest in Point Lonsdale in July 2005 and will assess any new information as part of the investigation,’’ she said on Monday.

“As with any ongoing investigation, we don’t intend to provide a running commentary.’’

In an exclusive interview that may trigger a test case for physician assisted suicide in Victoria, Dr Syme told Fairfax Media that he gave Mr Guest the drug after concluding he was suffering intolerable physical, psychological and existential pain.

Two weeks later, Mr Guest, 58, died from an overdose. Nembutal is used by veterinarians to put animals down. In Victoria, it is a criminal offence to incite, aid or abet a suicide – with a maximum penalty of five years' jail.

A spokesman for Victorian Attorney General Robert Clark would not comment on Dr Syme’s admission, but said the government had no plans to explore a euthanasia bill.

“The Government has no plans to refer this issue to the Victorian Law Reform Commission,’’ the spokesman said. Shadow Attorney General Martin Pakula declined to comment.

Dr Syme, 78, said after watching state Parliaments reject 16 euthanasia bills over the past 20 years he was ready to be charged over Mr Guest's death because a court case could set a useful legal precedent for doctors who were too scared to help terminally ill people end their lives.

"I just believe passionately that there are too many people suffering too much not to try a little bit harder to change things, and a lot of these things, it seems, will only be changed in a court decision, so bring it on," he said.

Before he died, Mr Guest spoke on radio about his illness and desire to take his own life. Police interviewed Dr Syme twice about his interaction with Mr Guest, but he declined to comment on whether he gave the dying man Nembutal.

A coronial report on Mr Guest’s death noted Dr Syme’s interaction with him, but said: “Despite thorough investigation by the police, the precise source of the Nembutal used by Mr Guest, and how he was able to obtain it was not able to be ascertained. Nor were police able to ascertain the details of advice given by Dr Syme to Mr Guest.”


Dying With Dignity Victoria (Rodney Syme is associated with this group)

Exit International (Philip Nitschke is associated with this group)


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