RED JOS

14 NOVEMBER 2014

Article in The Age:

Penny McCasker of the Voluntary Euthanasia Party.Photo: Simon O'Dwyer

Three out of four Victorians say people suffering from incurable illnesses should be able to access assistance to die if they want to, a poll suggests.

But neither the government nor the opposition has plans to engage with the issue before this month's state election. Labor leader Daniel Andrews said he did not support voluntary euthanasia and Premier Denis Napthine declined to state his personal view.

Both said they had no plans to refer the matter to the Victorian Law Reform Commission to advise them on possible legal changes.

Dr Napthine said: "That's not a matter I have thought to address. I believe that any proposal to change euthanasia laws is an important moral and social issue that should be decided by a conscience vote in Parliament."

A Fairfax Ipsos poll of 1000 Victorians conducted last week found 76 per cent supported a change to laws that ban assisted suicide and euthanasia.

It comes as Greens senator Richard Di Natale prepares a federal bill seeking to legalise voluntary euthanasia for people suffering "intolerably" from a terminal illness. The bill, which is being refined, would make it legal for doctors to help mentally competent adults with an incurable sickness to end their life.

Ten candidates in the Voluntary Euthanasia Party will run for upper house seats in five regions in the Victorian state election.

Lead candidate Penny McCasker said the party's sole goal was to have voluntary euthanasia referred to the Law Reform Commission so it could report back to state parliament on changes to the law.

The party says people experiencing unbearable suffering, a terminal illness or an incurable disease should be able to access medical assistance to die, with appropriate safeguards to protect vulnerable people, such as those who might be coerced into making a request to die.

Ms McCasker, a retired 68-year-old writer who is running in the South Metro region, said she believed politicians were out of step with the community on the issue of voluntary euthanasia.

"It is increasingly seen as a multi-generational issue," she said. "I think people need to be educated about it."

Ms McCasker said even if there was a conscience vote on the Greens' federal bill next year, she was not hopeful of it getting passed, mainly because there are so many Catholic politicians in federal parliament. She also doubted that some politicians would feel truly free to vote based on their conscience only.

"How many ambitious politicians are going to vote against their leaders' expressed views? Both leaders are Catholic," she said. "It's a shame … we're meant to be a secular state."

13 NOVEMBER 2014

Article in The Age:

Ray Godbold with wife Robyn. Photo: Eddie Jim.

Ray Godbold knows what it means to die a good death. He has seen people leave the world in (relative) peace, their symptoms mitigated by medication - their circumstance cushioned by the comfort of loved ones.

It has been his profession to make this process more palatable and pain free, and he knows it is possible to go gently - with acceptance and support and treatment.

He remembers a 58-year-old man man he nursed through the end stage of liver failure, who wished to go home to die. Godbold medicated and then loaded the semi-conscious man into an ambulance. He was greeted at home by two dozen of his Hells Angels brethren, and lasted seven hours on a tin-roof verandah before dying peacefully beside his mates.

Then there was the aboriginal elder in Broome, whose passing Godbold witnessed in the heat of an open carport, surrounded by 50 family and friends. Days later in the street he heard a chorus - "Wray, Wray, Wray" - and was brought to tears by the handful of grateful indigenous kids waving and singing out his name.

But, being a nurse for more than three decades, Godbold also knows how it feels in the room when the brutal finality of the end arrives without peace - when nothing is comfortable or resolved.

Godbold is himself a sick man. And although moments of "chemo brain" sometimes affect the acuity of his memory, it is impossible to forget those other shocking deaths he witnessed. The bad ones linger longer.

There was the 46-year-old woman - a heavy smoker with chronic lung disease and restricted breathing. She was tormented and combative and fought all who tried to help her through the pain. She was inconsolable right up until the end, and died of a massive heart attack while sitting up in bed in a panic.

And there was the pretty 21 year-old girl from a remote Western Australian town, with a rare vaginal tumour. Godbold would take her out for mango cheesecake after her treatments in Perth, until the day she was rushed to hospital bleeding. Godbold wept delivering the eulogy for his "Kimberley diamond".

In his 33 years as a nurse, Godbold has been a midwife and a manager, worked with children and cancer victims, and mastered everything from male catheterisation to neonatal resuscitation.

He has studied at Monash, LaTrobe and Deakin, trained at hospitals in Dandenong, Bendigo and Melbourne, taken up posts in Wonthaggi and Darwin, and has overseen emergency departments, district services and palliative care wards.

When his father was dying in 2011, Godbold tenderly nursed him at home in West Preston. And he was also by the side of his mother in 2012, after a major heart attack led to her demise.

Godbold, 58, has been in the delivery room for the arrival of more than a few hundred newborns, and has been present in homes and hospices as countless others have departed this life. But not anymore.

Godbold was diagnosed with stage four gastro oesophageal cancer in 2012. He was given 12 months to live, and has already outlasted that estimate by more than a year. He has no formal plan for his passing, but he is well equipped.

"I should still be working," he says, sitting at home in Inverloch, thinner than he once was. "But life intervened on me."

It has been an eventful life. Godbold was born and bred in the Collingwood flats. He joined the Navy in the late 1960s when he was 15 - and was stationed at the now notorious HMAS Leeuwin in Fremantle. He was there at the height of the institutionalised system of abuse and bullying - "bastardisation and brutality".

He lasted six months before coming back to Melbourne for his leaving certificate from Fitzroy High School. Then he bought a motorbike and travelled around Australia. He was reading Eastern philosophy at the time, and liked the idea of a job where he could contribute something to the community.

Nursing was the perfect fit - rural hospitals in particular. At one end of each building babies are born. At the other end their great grandparents are dying.

"You get the whole gamut of life and death," he says. "It's a microcosm of larger society."

Godbold was also part of the first wave of practitioners to learn palliative care - the process of providing relief and comfort to people with life-threatening illnesses. He mastered oral and "sub cut" (subcutaneous) delivery of opioids, and "breakthrough doses" to blanket the pain.

He learnt to communicate, and to look for small windows that would allow him to be useful - to help families take in the "realness" of the situation.

They always ask "How long will it take?" He learnt to answer in increments. It might be hours now. It could be days. We're looking at weeks. Maybe months.

He began to read signs, many of which you don't need a professional eye to notice. Agitation. Weight loss. Delirium. Difficulty swallowing. Difficulty breathing.

Godbold encountered people who wanted to be awake until the final second, and people who longed to slip away in slumber.

He met sons unable to sit and listen to the gurgling chest of their father, who left and asked to be phoned "when it happens". And he looked on as daughters clustered around a maternal leader to paint her nails, fix her hair and keep a rotating vigil.

"Some people have just got anger in them right up until the last minute, and will never find comfort," he says. "Other people continue and strive to stay there until somebody important comes in and holds their hand."

Godbold was taught that the last sense to leave the body is hearing, and so he told people as they sat by the bed to speak those loving words and say goodbye.

He took his skills north in 2008 after he and his wife Robyn, also a nurse, became empty nesters. They wanted to close the gap by working in Indigenous health.

The couple spent a month driving across the Nullarborand up the west coast to Broome, landing on Cable Beach or "the best nursing digs in Australia." Later they shifted to the Royal Darwin Hospital.

His 2012 diagnosis started with an innocuous bout of indigestion at their suburban apartment. He felt a sense of burning below his sternum, and promptly threw up his homemade chicken souvlaki.

The local GP treated him for heliobacter pylori (a stomach ulcer) with a month-long course of antibiotics. When that didn't work he had a gastroscopy.

"I had an 8-centimetre ulcerated adenocarcinoma tumour in my oesophagus, growing up the posterior wall." Scans found it had already metastasised and travelled to his liver and lymph nodes. "I had stage four cancer before I knew it."

He moved swiftly through the stages of grief - from loss to acceptance. "It was as though having been through this with so many of his patients, he had the skills to deal with his own demise," says his wife, Robyn. "He has seen a lot of adversity in his job, and he just gets that things don't always go as planned."

They flew home to tell their adult children (Tara, 31, Ella, 30, and Rory, 27), and Godbold continued working at the cancer centre - all the while enduring chemotherapy of his own. He laughs thinking about the day a volunteer mistook him for a patient, and asked which bed was his. It was time to come home.

He was given a referral to a doctor at home in Gippsland, finished work on a Friday and left the Northern Territory on a Saturday, pumped full of eight different drugs. They got in their Nissan X-Trail and lit out for Alice Springs, headed for Victoria.

"It was a pretty hairy ride home," he says. "Although that's a bit of a pun, because I didn't have any hair at all."

Godbold is strong now, and has his hair and beard back. He finished his second round of chemotherapy 10 weeks ago, but will not go through it again. He says it would prolong the inevitable, but cure nothing.

"The only thing wrong with my diagnosis is my age," he says. "I'm 58. I'm missing out on a quarter of the life I was looking forward to living."

He recently went on a five-week overseas trip, visiting the Metropolitan Museum of Art in New York, seeing the Marriage of Figaro in London, and taking a cooking tour of Paris. He went to Mona in Tasmania recently, because he had always wanted to go.

Now he just wants to live every day and make sure his children are happy. The milestones of his grandchildren give him joy.

Increasingly though, he is having difficulty swallowing. The obstruction will grow worse as the tumour swells. His diet is reasonably normal but consists of many rice products and "small-diameter foods".

He may be a candidate for a stent - to keep the tube to his stomach open - but he may not.

He will not feed from a peg tube inserted through his side and into his stomach - nor will he have a gastrotube put down his throat.

"I'm not going to have those," he says flatly. "So I'm either going to starve to death, or be down to a weight where hopefully this time next year I'll be able to ride in the Melbourne Cup."

The other thing that could kill him is the "disease burden" itself. The cancer will become only more active. Eventually his metabolism will be overrun and he could suffer from a "catastrophic event". Significant internal bleeding worries him.

"That's my fear," he says. "That one day I will just start coughing up some blood."

He has taken all possible steps - sorting out his medical power of attorney and advanced care plan. The research led to Dying with Dignity Victoria, although the group is not new to him.

Godbold went to a workshop held by Dr Rodney Syme more than a decade ago, out of professional interest. As a palliative care nurse at the time, he wanted to know what "the opposition" was doing.

Now though, Godbold believes palliative care and the right to die campaign need not be at odds. Taking care of someone and treating their pain is not incompatible with a dignified death.

"Palliative care has a great role to play in this," he says. "They're doing 95 per cent of things correctly. All they have to do is expand what they're doing and give people a choice - instead of saying 'That's the best we can do'."

Godbold wants to see new legislation that will allow him to leave his family on his own terms - and not as one of the gruesome vignettes that still haunt him from his career as a carer.

Like the affable army sergeant who always made him share a glass of Spanish sherry, but who died during a prolonged resuscitation attempt.

Or the suicidal elderly engineer - caught up in "classic existential despair" - who was sedated and took five days to die.

Or the countless people he has seen die of lung cancer, who could not catch a breath and passed away gasping. Or those who bled out as their insides gave way.

"Horrendous deaths," he says. "People with huge inoperable bowel obstructions that end their final hours with faecal matter in their mouths. These things are still occurring. I don't think society today should allow that."

His family is trying not to grieve prematurely. When Godbold lost his journal, it became a blessing. Writing each entry kept pushing him back into the fact that he is going to die.

He wants to continue living. He doesn't want to talk about timelines. He has no plans for his final hours. He has not inquired about procuring a shot of Nembutal to hasten the long darkness.

"I haven't crossed that bridge yet. I haven't thought that far into the future - I've been too busy living. But I think choice is imperative for that next stage," he says. "You're on the way out. You're going. Bye. See ya."

14 NOVEMBER 2014

Letters in The Age:

Some people believe that Dr Philip Nitschke's medical licence has been suspended – "Depressed people can make informed decision: Nitschke" (The Age, 13/11) – because the Medical Board of Australia is anti-euthanasia.

In fact, the problem is that he did not appropriately refer a patient with mental health needs for treatment.

If I discover that one of my patients has, say, cancer, it is my medical responsibility to ensure that they are referred to an oncologist so they are fully informed about their treatment choices. They are not obliged to undergo treatment, just to be informed enough to make a decision. By not giving his patient the opportunity to understand what mental health treatments could be available to him, Dr Nitschke denies him a true choice.

For a supposed fighter against medical paternalism, this is hypocritical, not to mention dangerous. What if his patient had an organic, easily treatable cause of depression (for example, low thyroid)? Should Dr Nietzsche still "not be a roadblock" to their suicide? Strike him off.

I loved your headline "Call for MPs' euthanasia conscience vote" (11/11). Where do I register to vote on euthanasing them?

John Nieman, Monbulk

15 NOVEMBER 2014

Letters in The Age:

With respect, Dr John Buchanan, (Letters, 13/11), palliative care is very far from perfect and is not better than the alternative. The pro-lifers trumpet the same tired mantra – "what if someone abuses voluntary euthanasia?", "thin edge of the wedge", etc. I side with the many terminally ill patients each year who would rather choose a planned, dignified exit than a slow, painful slide into morphine oblivion before an undignified death while their horrified, helpless family look on. Let people choose for themselves.

I was moved by Ray Godbold's story (Focus, 14/11) – a life well-lived and a death being approached with grace and dignity. The challenge is to allow those who are willing and able to witness and support others in the dying process to do so in the best way possible. As someone who follows primarily a Buddhist philosophy of life, I have not been able to make up my mind about assisted death, as it is so contextual. I would like more robust debate. There is something wrong if doctors are doing their best and "breaking the law" in the process. We have an obligation to determine our moral compass so that good people are acknowledged, not outlawed. Euthanasia is one of the great moral questions of our time.

15 NOVEMBER 2014

Editorial in The Age:

For the past week, The Age has published in the pages of the newspaper and across our digital platforms a comprehensive series of reports, videos, opinions and contributions from our readers to advocate for the right of terminally ill people to choose, under rigorously regulated circumstances, the timing and manner of their death. We began the coverage with an editorial urging the Federal Parliament to enshrine this right in law, and with a video testimony by a terminally ill Melbourne man, Peter Short, whose campaign for choice inspired Greens senator Richard Di Natale to propose legislation that would legalise strictly controlled physician-assisted death.

We believe that what has been presented in the past five days has established and indeed buttressed the case for change, and today we underscore and amplify our call on our lawmakers to act by debating, honing and then passing Senator Di Natale's bill. Not only should every lawmaker have an unfettered vote on this, but our political leaders ought to urge support for the change.

The very day our series started, the cross-party Senate committee that had been receiving submissions and holding nationwide hearings on the proposed legislation declared that it, too, supports a free vote. The committee's chairman, Liberal senator Ian Macdonald, said his mother's prolonged demise had partly shaped his view that terminally ill people should have a right to assisted death, provided the law has adequate safeguards. We believe foreign experience demonstrates that such protections, importantly including for those with mental illness, can be constructed.

Surveys have long revealed significant majority support across the Australian community for such change. This was again apparent yesterday, when we published a Fairfax/Ipsos poll indicating as many as three out of four people believe those suffering from incurable illness ought to have access to physician-assisted death. This belief was clear, too, in our online poll. We have been buoyed by the community's participation during the past week, and would like to thank all those who contributed. People have shared profoundly moving stories, creating a compelling and even cathartic compendium. We urge those who might doubt the need for legislation to review the collection on our website.

There surely can be no more of a universal issue; death is the only certainty for each of us. Perhaps the most powerful argument for change is that, while the majority of those who are given the option of physician-assisted death do not actually use it, everyone who has the option benefits immediately because it alleviates fear and anxiety. This is clear in those places overseas where physician-assisted death is legal, and in Australia, where it is being practised by compassionate medicos at their undue legal peril. One such doctor, and a leading advocate for choice, Rodney Syme, openly and courageously admits having helped many terminally ill people find peace and relief by giving them the means and knowledge to end their own life.

We again stress that we do not support voluntary euthanasia advocate Dr Philip Nitschke, because through his organisation, Exit International, he aids people who are not terminally ill to die by suicide. It is in the public interest to pass a law that permits doctors such as Dr Syme to offer relief to terminally ill patients, many of whom suffer excruciating physical and psychological pain, but prevents those like Dr Nitschke from facilitating the death of people who should instead receive treatment.

Life is precious, and should be protected – but not at all cost. We believe the past week has indicated a strong and pivotal nexus of support between the community and its elected representatives for a law to respect the right to this humane choice. The way is clear for change, and the time to act has arrived.

16 NOVEMBER 2014

Article in the Sunday Age:

Euthanasia advocate: Dr Philip Nitschke may face 12 more complaints. Photo: Getty Images

Philip Nitschke tribunal: Medical Board granted power to raid homes

There's tension in the air in Darwin. It's the end of what locals refer to as "the build-up": humidity is everywhere and thunderstorms are rolling in.

But the tension is highest not in the sticky midday sun, but in a small, nondescript hearing room in Casuarina, one of the city's northern suburbs.

Casuarina's everyday claim to fame is being home to the biggest shopping centre in the Northern Territory, but today it is the centre of a courtroom drama of life-and-death proportions.

The medical board of South Australia has taken the unusual step of making an immediate suspension of a doctor to protect the health and safety of the community.

Philip Nitschke has treated about half a dozen patients over the past two years.

His primary work is promoting and explaining how anyone can end their lives in a peaceful manner. It was in this capacity he had a fateful meeting earlier this year with an otherwise healthy Perth man, Nigel Brayley, who triggered the medical board's decision by committing suicide using Exit International's advice.

But the debate that raged in the Darwin courtroom was about more than the death of one man. It took in some of the biggest questions there are about euthanasia: when should a person be allowed to make such a decision for themselves, and when do doctors have a special duty to intervene to stop them?

It also may mark the beginning of the end of one of the most unusual and, some say, inappropriate medical careers in Australia's history.

The idea that someone with a terminal illness, who is suffering and in pain, should be able to end their life is relatively uncontroversial in Australia. Polls consistently show the majority of people support it.

But Nitschke remains a polarising figure, in part because his work exposes the messy edges that result when an idea is implemented. The man nicknamed "Dr Death" is also an aggressive advocate, seemingly stopping at nothing in his support for dying.

Dr Sascha Callaghan, a lecturer at the Centre for Values, Ethics and the Law at the University of Sydney, says Nitschke's apparent enthusiasm for death makes people uncomfortable.

"Deciding to end your life is tragic, and in a very deep sense human beings have always felt death is just plain bad – just by itself," she says.

"Nitschke is of a different type. He seems to be "for" death… he doesn't seem to think that that there is a moral duty to try to talk people out of it. He gives this impression that death is a decision like any other."

Nitschke's Exit International group is radical because it allows, basically, anyone in, as long as you are capable enough to sign up and participate in the forums in a civil manner. Nitschke explained to the Darwin tribunal that unless someone is obviously mentally unwell – psychotic, or behaving very strangely – they are welcome in meetings.

The picture painted by the ABC's 7.30 one night in August this year was not pretty. Nitschke was supporting vulnerable people to take their own lives.

The program told how he had had an email exchange with Brayley two weeks before he died.

Brayley's wife, Lena, had died a few years ago in an apparent accident police were now investigating as a murder.

Kerry O'Neil, Brayley's friend, told 7.30: "I think most people would assume [euthanasia's] role is quite clearly for people who are terminally ill, suffering … really in that situation where life has become intolerable in a physical sense, not for people that are just simply going through a down period in their life. Everyone goes through down periods in their life."

The Exit International forums reveal Brayley had been a "prolific contributor" to the site. Before he met Nitschke he had travelled to Hong Kong to obtain the euthanasia drug Nembutal, and explained to other users how to do so.

In fact, he "started a bit of a trend", Nitschke tells Fairfax Media, in people taking their holidays in Hong Kong and picking up a supply on the side.

On February 24 this year, Brayley attended an Exit International workshop, where Nitschke spoke to him, because he was surprisingly young for someone at the 300-strong event, with an average age of 75. Brayley told him he was attending because he wanted to be prepared for the future.

Soon after, they met again, at a rally of candidates running in the WA elections. They had a brief conversation, during which Brayley told Nitschke that his life was not going well. Nitschke asked him what was wrong, and if he wanted to talk to him or someone else, and Brayley, in Nitschke's words, told him to "butt out".

By mid-April, Bayley was one of a number of Exit members whose houses were targeted in simultaneous raids.

Nitschke emailed Brayley to ask him why he had been raided, and if he would speak to the media about it.

It is these emails that 7.30 obtained.

In them, Brayley says he has been targeted because of his Exit postings about successfully obtaining Nembutal: "I am not ashamed of my decision to exit or the reasons for it, however I don't honestly fit neatly under Exit's charter of supporting a terminal medical illness however i am suffering and have been now for some 9 months".

"I have sought medical and other forms of assistance but they are unable to help. All recognise and accept that my life will never be the same and that it is only going to get worse".

Nitschke later tells Fairfax Media: "I read it as him telling me he didn't want me to get involved, but other people read it as a cry for help" . It has since emerged there were concerns about the previous disappearance of another of Brayley's partners. Can someone who is depressed rationally choose to end their life?

The idea that, to use a phrase Nitschke repeatedly chose to use, a "serial killer" might want to end his life to avoid jail, is perhaps not so shocking.

But an innocent man hounded by the police deciding to kill himself?

As the stigma on talking about depression and suicide has lifted in Australia, more and more people have joined the battle to prevent it.

Yet the Tribunal heard there are no safeguards in place to prevent someone who is depressed from using the Exit strategies to end their lives.

Nitschke has consistently defended his view that some people who suffer depression might quite reasonably decide they do not wish to deal with that condition any longer, and end their lives. Or, they may have depressed feelings, and choose to die for some other reason, and we shouldn't prevent them making that decision because of those feelings.

He says the rate at which the elderly are prescribed antidepressant and anti-psychotic medication (far more than any other age group) means simply showing signs of depression should not rule them out of a euthanasia death.

The University of Sydney's Sascha Callaghan points out that assuming people who are severely mentally unwell can never make a decision to die or refuse lifesaving treatment can have particularly disturbing outcomes in some cases.

In one such case, a woman with anorexia, alcoholism and personality disorder had made an advance directive that should she become very unwell she should be given palliative care. This had happened, until, close to death, a UK court intervened to order she be force fed, a traumatic and dangerous intervention.

"It seems strange to us that the only people who don't seem to have the right to die when there is no further appropriate treatment available are those with an eating disorder," her parents told the court.

But the idea that someone who is at their lowest, but may well find a path to recovery, could instead make a suicide attempt they would regret (if they survive) is also deeply troubling.

Perhaps especially for psychiatrists, who pick up the pieces of such failed attempts, and see the eventual relief of survivors.

When the Brayley case was revealed the president of the Royal Australian and New Zealand College of Psychiatrists, Murray Patton, said referal and diagnosis of depression could be lifesaving. "It is of terrible concern that Dr Nitschke fails to appreciate such a fundamental clinical issue," he said.

As Nitschke faced the tribunal this failure to intervene was key.

"The concern I have is that you as a medical practitioner … if someone comes to you and is in one of those situations when they're not sure … that [you] may effectively seal the deal if you like, rather than lead them to question their own thought processes," President Kelvin Currie said.

Lisa Chapman, the Senior Counsel acting for the medical board,said, his status as a doctor meant he had an obligation to intervene, even if the suicidal person was not his patient.

And what if, she asked, Nitschke's "Dr" title gave encouragement to such a person they wouldn't feel if he were not a doctor.

But Nitschke argued he had no special obligation, other than the moral obligation anyone would have to suggest Brayley discuss his decision with someone else.

Was this the "mistake" authorities have been waiting for?

After a gruelling five hours of examination, he did admit "it was a mistake" for him to not make that suggestion again during the email exchange, and wondered if he had become desensitised to death by the sheer number of such emails he receives.

Later, he tells Fairfax Media he still thinks to do so would have been primarily about "protecting my own arse", as it would have made little difference to Brayley's decision.

"I wish I had done it for my own well-being, but I suppose if there was another unusual case like Nigel's it would be good, and who knows, it could make a difference."

But perhaps Nitschke is being a little optimistic when he says that one sentence could have made a difference to him.

On the first day of the hearing, Chapman revealed the board was currently investigating 12 other complaints against him.

Nitschke says despite his lawyer acting pro bono, he has spent upwards of $100,000 on the case.

"I can't go through this 12 more times," the says. "Sooner or later they wear you down, because they have unlimited resources."

"I don't feel like bankrupting myself to save a medical degree I rarely use".

Nitschke is tired. He looks older than his 67 years, and you have to wonder why he is fighting this battle.

Perhaps unsurprisingly, the answer is the same in life as it would be in death: he wants to go on his terms.

"At the moment I'm being depicted around the world as a failed, disgraced doctor. It damages my credibility in the political debate," he says.

But Nitschke hopes there may soon be little need to advocate for change using politics, when like-minded people can create communities online that facilitate breaking the laws that don't suit them.

So was it ever about the patients? Not for Nitschke, it seems, who freely admits his practice of medicine these days is marginal.

And maybe not for the medical board either.

After all, Chapman reminded the tribunal: "What effect would it have of not suspending him?"

It would be "a very public thumbs up" for a man who continues to advocate the most dangerous of ideas, no matter who is listening.

17 NOVEMBER 2014

Article in The Age:

"We accompany people and their loved ones each day as they go through their own processes of dying." The hijacking of the term "dying with dignity" by today's supporters of euthanasia and assisted suicide is an insult to the dedicated doctors, nurses and pastoral carers who daily provide compassionate care, pain alleviation and spiritual comfort to the sick, the dying and their families.

Debates about euthanasia and assisted suicide are emotionally harrowing. All the more so when they occur during election campaigns. The timing and manner of the current debate exacerbates the fear of dying held by many in the community and diverts attention from the conversation about providing the dying with the innovative medical and healthcare they need, in homes, hospitals and aged-care facilities.

Funding for end-of-life palliative care by governments and private health insurers is inadequate and undervalued. The first step in public policy regarding death and dying is to guarantee that those who need palliative care services can get them. For people who are poor or vulnerable, who are mentally ill or incarcerated, who live in rural and remote communities, it is crucial that they can get the palliative care services to which we are all entitled.

Overseas experience shows that where euthanasia legislation has been enacted, pressure has been applied to the frail aged, disabled and mentally ill to follow the now "normal" path of physician-assisted death. That path has little to do with dignity.

Usually the most terrible stories of suffering are told to advance a change to law that will allow euthanasia and decriminalise assisted suicide. This is understandable, but hardly a credible and rigorous presentation of the realities of care for those who are dying.

Many thoughtful people in our society support the notion that we should be able to die with dignity, yet still oppose the proposed euthanasia legislation because it's bad law. We all accept that people should not have to suffer unnecessarily. The proponents of euthanasia law reform equate a refusal to support the legislation with forcing the dying into interminable suffering. But the risk is that a change to the legislation simply forces the suffering into the additional and equally interminable dilemma of choosing their moment of death. Making it possible for people to end their life legally is not about dying with dignity.

With developments in the provision of palliative care in the home, and innovations in pain management, there is the prospect of an ever-improving quality of life at the end stages. The evidence for it and experience of it is strong. A recent Grattan Institute study showed that most Australians want to die at home. There is a very understandable desire for each one of us to die in the places where we have loved and been loved. It also makes economic sense for those enacting public policy. It will mean less time in hospital, and that is a saving. It may also be a lot less expensive than seeking a new legal process of multiple safeguards for someone to either commit suicide or be euthanised.

For those who die in the care of a hospital there are positive and loving care options available that can be further expanded. St Vincent's and other healthcare providers will continue to provide such dignity-based care.

Dying with dignity is not a new thing that those promoting euthanasia and assisted suicide have discovered. At Caritas Christi and in our provision of high-quality, person-centred palliative care, it has been a daily experience for tens of thousands of families for more than 75 years. We accompany people and their loved ones each day as they go through their own processes of dying over months, weeks and days; as they die and as their loved ones grieve and mourn for their loss. It is more the norm than the exception that we hear and see the most beautiful expressions of love, human affection, reconciliation and alleviation of suffering. It is dignified.

It is on the back of inaction on funding and investment in palliative care and a lack of education of the community about dying and death – as well as some false premises that all death is undignified and that suffering must be avoided at all costs – that euthanasia and assisted suicide are proposed now as "rights".

Dying, death and dignity are worthy topics of our public conversation. But they should not be manipulated. The truly compassionate response to our dying family members is the highest quality, evidence-based palliative care. It needs to be well-funded and researched, valued by governments and insurers, and promoted so as to always be innovative to meet the needs of our community.

17 NOVEMBER 2014

Letters in The Age:

It is a source of concern that those advocating for the right to take their own lives, apparently made legitimate by a range of circumstances, do so out of fear.

Death is nothing new. We are all going to die one way or another. However, we are constantly told that without the right to commit suicide (because that is essentially what euthanasia is), we would die a painful and lonely death.

Palliative care is acknowledged as an option, but usually considered as effective as taking a sugar pill.

Dying with dignity is not achieved by way of suicide. Instead, a dignified death comes about when we accept whatever circumstances death comes to us, realising that there is real and effective help available through palliative care, to see us gently out of this world.

My partner, Frans, died of motor neurone disease (rapid onset bulbar palsy) at the end of March this year. His symptoms had appeared 16months earlier. He got very sick of professionals and bureaucrats following legal requirements and asking him for permission to share his medical details with other agencies. He had to use progressively more sophisticated communication machines because he could not speak for the last 12 months. In the final eight months, he pushed a preset button for his standard response: "When someone is immobile, dribbles all the time and is incontinent, there is no privacy." Such is the legal system that does not allow any of us to die with dignity.

18 NOVEMBER 2014

Letters in The Age:

On the wall behind the bed where my grandmother lies is a large reproduction of a painting of the Sacred Heart of Jesus, its colours vivid; blood in the shape of a tear drops drips down the gentle face. The cloak is red, the heart in the centre of a penumbra of light seems to glow in the darkened room. Beneath this image, my grandmother, her face ravaged by cancer, writhes and prays for deliverance. Mother of God, she cries. Help me die.

Her daughters and grandchildren watch as her priest hastily administers the last rites, then nods to her general practitioner.

We all kneel either side of her bed as he answers her prayer.

What right does a man who calls himself Pope have to pontificate on yet another individual choice ("Pope speaks out against euthanasia", 17/11). Physician-assisted death is not a symptom of a throw-away society, but the exercise of true compassion sadly lacking within much of the church. My grandmother's experience is not an isolated case among Catholic families.

So the Catholic church considers that those who support assisted suicide view the sick and elderly as "useless drains on society". They just don't get it. It is the sick and/or elderly who support, and wish for, a quick and peaceful death. We do not fear death. We fear the dying that precedes it. We have lived long enough to witness the prolonged, painful and humiliating process of the unassisted death of family members or friends, and do not want our families to be haunted by that memory. We are not stupid: we have provided statements registering our wishes, and we despise the scare campaign about being "put down" for our money or property. I want compassionate help from medical staff who need not fear prosecution, because in a civilised society the law will protect them. I don't care if religious organisations or their followers think this is a "sinful" idea. This body is mine, and I will decide how it should die. My body, my death, my choice.

19 NOVEMBER 2014

Letters in the Sydney Morning Herald:

Jack de Groot agrees "dying, death and dignity are worthy topics of our public conversation". But then he cuts conversation short with his dogmatic statement: "The truly compassionate response to our dying family members is the highest quality, evidence-based palliative care." That may be one compassionate response but there are others, including being able to leave the world at a time of your own choosing. Dying with dignity advocates do not want to impose their response on Mr de Groot and we'd thank him not to impose his chosen response on us. Living is an opportunity to make choices, not a painful duty.

No one working in the medical profession could sensibly deny that good, well-resourced palliative care is a great advance. Sadly, even those who work in palliative care realise, however, that there are limits to the benefits some patients receive, leaving them distressed, in pain or otherwise facing a miserable time, often shared by their loved ones, before their inevitable end.

No matter who has hijacked the term "dying with dignity", these people don't experience it (Comment, 17/11). It's about time those who ignore the existence of such patients came up with a practical solution not couched in platitudes, philosophy or the notion that more funding might produce even better palliative care in the future. The simple acceptance of the fact that, sadly, for some there are worse things than dying would be a good start.

21 NOVEMBER 2014

Article in the Sydney Morning Herald:

The long-running debate about whether voluntary euthanasia or assisted suicide should be permitted by law continues to create division in the Australian community and arouse passionate views on both sides.

In the latest rounds of the debate, a Senate Committee has called for a conscience vote when the matter next gets to Parliament, the Australian Medical Board has suspended the medical registration of euthanasia activist Dr Philip Nitzsche, and The Age has initiated a campaign of its own to influence public opinion. Sadly, despite the sound and fury, little progress is made: on the one side, the proponents of active voluntary euthanasia pursue the demand for enactment of "right to die" legislation, while on the other, their opponents continue to call for preservation of traditional values and practices.

The often strident and acrimonious tone of the debate obscures the facts that there is much agreement between the two sides and that there is a genuine problem in the current law that needs to be addressed. Recognition of this common ground might allow the social deadlock to be broken and for genuine progress to be made in the continuing controversy.

The agreement – which is demonstrated by all polls conducted on this subject – is that people suffering from terminal illnesses are entitled to adequate treatment of their symptoms and should be able to make key decisions about when and how they die. The problem with the law is that doctors who follow current best practice, by providing whatever care is needed to alleviate pain and suffering, cannot be confident that they will be protected from criminal prosecution for murder, manslaughter or aiding and abetting suicide arising from their active involvement in the death of their patient.

Of course, important areas of disagreement remain. Many members of the community find it hard to abide the prospect of institutionalised processes to promote killing in any setting, based either on their memories of the tragic history of the 20th century or on religious or philosophical convictions about the nature of death and ethical responsibility.

While the experiences from overseas jurisdictions – the US and Europe – are undoubtedly reassuring, it has to be accepted that these concerns are by no means frivolous. The possibility that the option of euthanasia might be seen by some as a device for addressing critical shortages in health budgets cannot be dismissed. Many doctors remain understandably nervous about the implications for their profession of what they see as a radical reversal of some of its most enduring precepts. The cases of people with chronic but not terminal illnesses remain difficult, and those of people without physical illness at all more difficult still.

We believe that a shift in the debate from the high-level – and inherently insoluble – abstractions about a "right to die" and the "sanctity of life" to a focus on practical issues that need urgent attention might allow the social deadlock to be broken and progress to be made at last in bringing about meaningful reform. To achieve this only modest changes in the existing law are needed.

We propose that legislation be enacted to amend the relevant Commonwealth and State Crimes Acts to provide a defence to a charge of homicide or manslaughter if a doctor has prescribed or administered a drug that hastened or caused the death of a patient with a terminal disease if the doctor: (a) reasonably believed that it was necessary to prescribe or administer the drug to relieve the pain or suffering undergone by the patient; or (b) prescribed or administered the drug with the intention of relieving such pain or suffering.

A simple legislative change to this effect would ensure that people facing serious illness could be confident that their needs will always be able to be met, and that doctors following accepted best practice in providing for the needs of their patients will be able to do so free from the threat of a criminal conviction. The responsibility of doctors to be able to account for their actions will not be diminished and protection for elderly and vulnerable members of the community will remain intact. The locus of end-of-life decision-making will be returned to where it should be: in the dialogues between patients, families and their medical carers.

This minimalist solution should be widely acceptable to the community, including to those who remain disquieted by attempts to purify death of its untidiness, uncertainty and risk. The difficult cases in which patients with severe chronic illnesses but without terminal illnesses request assistance with dying will remain unsolved, but the public debate will be able to move ahead to address the complex issues associated with them.

It is time to move on from never-ending, unproductive, circular discussions about end-of-life decision-making to a more practical approach that will solve pressing social problems and refresh the public debates.

22 NOVEMBER 2014

Article in The Age:

Is "dying with dignity" the best way to describe assisted suicide? Or is the term used too loosely now, offering false hope to us all?

The deaths of my close relatives were not dignified. They came without warning. By the garden gate. After a shower. On a bike, in a collision with a car. I can only hope they were quick.

Several youngish people I've known did manage to die in the company of loved ones. Still, from my limited experience, there's little dignified about death. People's faces do not necessarily look "at peace". Bodies can be in awkward positions. There may be blood.

Dying slowly and painfully is an especially frightening prospect – particularly if you don't see it leading to an afterlife. Most of us have autonomous, empowered lives. We fear a loss of control; being beholden to others, kept alive by machines.

Buddhists talk of life as a process of decay, encouraging us to dwell on our impermanence. I don't believe in a Buddhist rebirth but I find this idea of decay comforting, because it connects us to the cycles of nature. In the natural world, living things break down, returning to the soil to fertilise new life.

Yet how our culture fights and denies decay. We recoil from wrinkles. We fetishise youthful beauty and ignore the wisdom of elders. Too often, old people are patronised or hidden from view.

The campaign to "die with dignity" through assisted suicide can be viewed in several ways. Is it a humane step that seeks to reclaim our bodies from unnatural medical interventions? Or might it reflect our culture's obsession with trying to control natural processes?

My dictionary defines dignity as "the state or quality of being worthy of honour or respect". Yet being human is sometimes undignified – as any puking, pooing, breast-guzzling baby will remind us. At times, our bodies can seem like a mere collection of orifices.

Much public discussion around the right to die has hardened into two camps – you're either for or against. But it's possible to feel deep sympathy for an individual's predicament yet have mixed emotions about the matter. There are so many grey areas.

When Brighton woman Beverley Broadbent allowed The Age to chronicle her journey towards so-called rational suicide last year, I felt uncomfortable reading of it. Broadbent, 83, looked so healthy. And I couldn't help wondering if she'd have clung more fiercely to life if she'd had grandchildren. (Watching a child grow seems a wonderful antidote to your own body's decline.)

Broadbent's courage awed me, but her decision to take her life when not terminally ill seemed sad. If more older people lived communally, among varied age groups (not in ghettos for the elderly), might the journey towards death feel less solitary?

Still, it seems cruel not to let others who are terminally ill end their excruciating suffering with the help of doctors.

In these pages this week, Jack de Groot from St Vincent's Health Australia accused supporters of euthanasia and assisted suicide of hijacking the term "dying with dignity". Not all death was undignified, he wrote. With palliative care, people were already dying with dignity.

It seemed odd that in writing about the compassion and respect shown by palliative care staff, de Groot's tone veered towards belligerence in his criticism of euthanasia supporters. And, as I read his words and the passionate response they provoked, I couldn't help thinking of the many who get no say in the manner of their demise.

I'd always (foolishly) imagined my relatives would have "good deaths" involving some sort of palliative care, surrounded by loved ones. But I may have watched too many Hollywood tearjerkers. I have never seen such a death, though I have heard others speak of it. At such times, it can be hard not to feel a touch of envy. Why didn't I get to hold hands and say goodbye?

In discussing voluntary assisted dying let's call it what it is: a quick suicide in a specific and controlled situation. And while we should do all we can to help the dying, let's not kid ourselves that we can reach some halcyon state where most deaths are dignified.

The Grim Reaper still likes to come at a time of his own choosing, with no regard for our feelings.

24 NOVEMBER 2014

Letter in The Age:

Prime Minister Tony Abbott's assurance to Peter Short that federal Liberal members (like Labor) will be allowed to vote freely on the upcoming dying with dignity bill (The Age, 22/12) is heartening news.

Please, politicians, whether or not you would want the option of a hastened death for yourself if you were terminally ill, do not deny it to others. Acknowledge that the vast majority of Australians – who you represent – have said they support this.

And imagine the palliative comfort for dying people if they knew they could choose to ease themselves out gently, at home, when they feel it was time to let go – even if, in the end, they never actually do this.

30 DECEMBER 2014

Article in the Sydney Morning Herald:

Euthanasia campaigner: Peter Short. Photo: Joe Armao
Born 28 January 1957
Died peacefully in Cabrini Pallative Care on December 29, 2014

Physician-assisted death campaigner Peter Short, whose advocacy and plight inspired draft dying-with-dignity legislation in the Federal Parliament, has died aged 57.

Mr Short passed away peacefully on Monday morning, in palliative care and with wife Elizabeth holding his hand. Mr Short's campaign was based on his belief that it was undignified for terminally ill to not have the choice to end their own lives under carefully controlled circumstances. Mr Short was given the means and the knowledge to end his own by physician-assisted death campaigner Dr Rodney Syme.

Mr Short did not take that option.

His wife Elizabeth said Mr Short, like everybody who is given the option - albeit illegally in Australia the moment - benefited hugely because having choice removed fear and anxiety.

"The fact that Peter had the knowledge and the means to end his own life was an invaluable part of his palliation," she said.

"It allowed him to live the remainder of his life exactly as he wanted – pushing himself as hard as he wanted, working 12 hour days in his support of the proposed dying with dignity legislation, making wonderful memories with his family and friends.

"He did not fear the end as he knew it was his to control he if so chose."

His cousin Michael Short, editor of The Zone section in The Age, said Mr Short's final year was made so much richer because he had that option.

"Peter embodied and experienced the benefits of the change in the law he was seeking", Michael Short said.

"Having the option is the important thing. That's what helps people."

In January Mr Short was told his oesophageal cancer – in remission for five years – had returned, and would kill him. At the time, his doctor told him he had only five months to live, a prognosis he would significantly outlive.

After his diagnosis, Mr Short became a fierce campaigner for the right of the terminally ill to have choice at the end of their lives.

He worked closely with federal Greens senator Richard Di Natale on the development of a bill that would make it legal for doctors to help terminally ill, mentally competent adults end their lives.

Senator Di Natale, the Greens health spokesman, introduced the draft legislation earlier this year. It was referred to a Liberal-led all-party senate committee, which held national hearings and received many submissions.

The committee, led by Liberal senator Ian Macdonald, recommended a free vote in the Parliament for the legislation, and supported its passage.

That bill is expected to come before the Senate next year. When it is introduced, the senator hopes to have it co-sponsored by an MP from each major party.

For months before his death Mr Short sought a meeting with Prime Minister Tony Abbott to urge support for the bill and a free vote for Coalition MPs.

Mr Abbott rang Mr Short days before his death, and during a half-hour conversation pledged his MPs would be given a free vote should the bill reach the floor of the Parliament.

That was like reaching "the top of a mountain", Mr Short told The Age at the time.

A month ago The Age ran a week-long campaign in support of a change to the law to allow physician-assisted death in strictly regulated circumstances.

Much of his story he documented himself, on his blog Tic Toc Tic Toc dying to a killer clock.

On Monday his wife Elizabeth posted the final entry.

"My beautiful husband Pete died this morning at 12:20am. He died peacefully and I was privileged enough to be sitting on his bed holding his hand at that time.

"Pete's decision to opt for palliative care brought him to a place of calmness and serenity and for all of us, safety and security. It allowed Pete to relax, stop fighting and go calmly to his happy place.

"Thank you all so much for your constant love and support, it has meant the world to us."

For Peter's sake

31 DECEMBER 2014

Letter in Tha Age:

My friend and neighbour, Peter Short, passed away peacefully on Monday, after succumbing to oesophageal cancer. His final journey was made more bearable and dignified because he was equipped with the means to end his life at a time of his own choosing, should he have elected to do so.

Peter spoke so passionately about the palliative power of having that choice and lobbied hard to make it available for all Australians suffering terminal illness, without their physician risking criminal prosecution.

Sharing his experience very publicly with the support of his family helped to bring the dying with dignity cause to public attention and has set the stage for a change in the law. Tony Abbott contacted Peter before Christmas and agreed to allow Coalition MPs a conscience vote on Senator Di Natale's draft bill in the new year. It is up to our federal MPs now to vote it into law – in Peter's memory and because it is the right thing to do.

So give your MP a call now to stress your support for the bill.

7 JANUARY 2015

Article in The Age:

Prominent euthanasia campaigner Philip Nitschke has lost a legal battle to protect his registration to practice medicine after a tribunal ruled he posed a serious risk to the public and could undermine confidence in the medical profession.

But Dr Nitschke has vowed to appeal the decision by the Northern Territory Health Professional Review Tribunal, saying doctors have to face the "harsh reality" that many people, including those who are not terminally ill, believe they have a right to end their own lives.

The tribunal ruled that the Medical Board of Australia's decision to use its emergency powers to suspend Dr Nitschke's registration last year was warranted. The suspension followed reports Dr Nitschke had supported Nigel Brayley, a murder suspect who was not terminally ill when he ended his own life last year. When Mr Brayley told him of his plans to end his own life, Dr Nitschke did not refer him to a medical practitioner.

In an appeal of the board's decision to the tribunal, Dr Nitschke argued he was not in a doctor patient relationship with Mr Brayley when they discussed end of life options and that people without a terminal illness could make a rational decision to commit suicide.

But in a strongly worded judgement, the tribunal said Dr Nitschke posed a risk to public health and safety because he interacted with large numbers of people considering suicide and his views might cause people to "follow the pathway to suicide believing it to be a pathway sanctioned by a medical practitioner and perhaps the medical profession generally".

It said his views may also mislead people about the values of doctors and undermine confidence in them.

In a written statement, Dr Nitschke said he was disappointed but not surprised by the decision which he was now appealing in the Darwin Supreme Court.

He said the tribunal's finding meant doctors were obliged to treat strangers they meet in a social setting, even if they are not in a state where they are permitted to practice medicine.

"A doctor who fails to do so is, in the view of the tribunal, a danger to public health and safety whose right to practice medicine must be suspended immediately," he said.

"The decision, if left unturned, creates a very dangerous precedent which applies to every Australian medical practitioner".

Dr Nitschke's barrister, Peter Nugent, said it was an error of law for the tribunal not to consider the "enormous body of medical literature addressing the issue of rational suicide". He expects the Supreme Court appeal to be listed for hearing in coming months.

Dr Nitschke said: "Voluntary euthanasia and rational suicide are very challenging issues for the medical profession. It is cases such as this which will hopefully encourage the medical profession to face the harsh reality that the belief held by many elderly people, and some who are not, that no doctor has the right to tell them when they can or can't exit this life – can be rational and not a product of depression or mental illness."

"We might not like or agree with such decisions but they cannot be interpreted as meaning that person is depressed or mentally incompetent. Nothing could be further from the truth," he said.

24 JANUARY 2015

Article in The Good Weekend:

When corporate high-flyer Peter Short became terminally ill, he focused not only on living a better life, but campaigning for greater choice at the end of it.

When he learned on his 57th birthday that he had terminal cancer, Peter Short decided to do a lot of living in the time he had left. After quitting his job - he was a highly-paid business executive - he snorkelled on the Great Barrier Reef, gambled in glitzy casinos, basked beside pools in tropical resorts, ate delectable meals in fiendishly expensive restaurants and drank some excellent red wine. He had to be home in Melbourne once a month for palliative chemotherapy - he was determined to keep the cancer at bay for as long as possible - but he took so many holidays with his wife, Elizabeth, and their son, Mitchell, that some of his close acquaintances lost track of him.

"We were in Cairns," Short told me, "and a friend rang up and said, 'My daughter wants to know whether you're still alive.' " Actually, the friend's daughter had put it another way: "Is Shorty dead yet?"

The conversation gave him an idea. "I thought, 'I'll set up a blog so people can stay in touch. To make it worthwhile, the story will be about the experience of having cancer - trying to demystify some of these things.' And then it became political as well."

On April 28 last year, three months to the day after receiving his grim diagnosis, Short read a newspaper article in which a Melbourne doctor, Rodney Syme, declared he had provided a lethal quantity of Nembutal to a dying man, who subsequently used the barbiturate to kill himself. Syme, vice-president of Dying with Dignity Victoria, said he had defied the law against medically-assisted suicide because 58-year-old Steve Guest had been suffering intolerable physical and psychological pain and deserved to have control over the end of his life.

Short was struck by a couple of coincidences. First, Guest had lived in the coastal township of Point Lonsdale, at the entrance to Port Phillip Bay, where Short and his family had rented a beach house for years. Second, he and Guest had the same disease: oesophageal cancer. Elizabeth, who read the story before her husband, said she thought about hiding it from him: "I was in an absolute sweat about what I should do. Should I leave it there? Should I take the paper away? Because I thought it would really upset Peter."

Instead, it galvanised him. He dashed off a letter to The Age in support of Syme, and was chuffed when it was published. "I have decided to see how I may be able to light a fire under this issue," he wrote in his blog, signalling the start of a personal campaign for the legalisation of voluntary euthanasia - a campaign for change that would, in a sense, change Short himself.

Previously, a typical entry in his blog went like this: "What does one do over Anzac Day if it's the last one? Well, we went to Crown, booked in Friday mid-afternoon, saw a movie, had a great dinner at The Atlantic - caviar as an entrιe, as I had not done that before - then a bit of blackjack. Always a good night when you win enough to pay for the room."

After meeting Syme, Short posted a rallying cry on his website: "Make Australia not just a great country to live in, but a great country to die in also!" In a powerfully worded opinion piece published in The Age, he stated his intention to "go out of my wonderful life at a time of my choosing". He respected those who believed it was better to hold on until the very end, he wrote. "Both paths are dignified. What is undignified is not having the choice."

Victorian Greens senator and former GP Richard Di Natale heard Short interviewed on the radio and suggested they work together to push for the introduction of a federal law that would give the terminally ill the right to medically assisted death. Short curtailed his pleasure jaunts and started travelling to Canberra, where he lobbied politicians and pressed for a meeting with Prime Minister Tony Abbott.

At the same time, he raised funds for the production of a documentary about the last months of his life. "It's not about me trying to become famous because I'm dying," he said. Rather, he regarded it as an opportunity to continue campaigning beyond the grave. "I really want the law to change, and the probability is that it's not going to happen in my lifetime."

Elizabeth watched all this with a mixture of bemusement and admiration: she wouldn't have picked Short as the type of guy to dedicate himself to a cause. "Not if there was nothing in it for him," she said with a laugh. Her husband had been a corporate high-flyer: "Very ambitious, very driven by the dollar and success." He was a lot of fun and a wonderful provider. But public-spirited? No. Altruistic? Not especially. Now she found herself married to "this quite different, nicer - much nicer - person. More caring. More community-focused. More generous."

Elizabeth admitted she had joked darkly that if Short somehow managed to survive it, "getting cancer would be the best thing that's ever happened to him". But they both knew he wouldn't survive: in late November, his doctor gave him six to 12 weeks to live.

The story really begins more than six years ago, when Short became aware of a persistent pain in his upper back. He had a gastroscopy - an examination of the upper digestive tract - and tissue samples were taken for testing, but it didn't occur to him that anything was seriously wrong. "It's dumb how you don't see any of this stuff coming," he told me.

Short was chief executive of Coles Express, a nationwide network of about 650 service stations and convenience stores. "It turned over about $7 billion a year, made about $150 million and employed about 4000 people," he said. "So it was a big job." The day he learnt that his gastroenterologist wanted to see him urgently, he was hosting a company conference in Sydney. That night, he sang and danced aboard a party boat on the Parramatta River, while dread pooled in the pit of his stomach. Next morning, he returned to Melbourne, where the doctor came straight to the point. "He said, 'Here it is: a tumour in your oesophagus.' "

The first step was major surgery. Problems arose, making follow-up operations necessary: Short was in hospital, fed through tubes, for six weeks. Looking back, he realised that this was when his mindset started to shift. "I had always lived in a very corporate, goal-oriented, climb-the-ladder type of world," he said. "Though I'm a gregarious, extroverted person and get on well with people, my approach to them was that they were tools to the ends of what I was trying to achieve.

"After I met all the people in the hospital - the nurses and doctors and all the others, the cleaners and everybody - it was an awakening to me: 'Here are all these people who don't think anything like I think. They come to work because they just want to help people.' "

When he returned to his own job, a little of that attitude had rubbed off on him. He found he cared about his staff and colleagues as individuals rather than just as members of a profit-making team. The drive that had got him to the top - and onto the cover of CEO magazine - was still there, but his focus had altered. His new priority: "Coaching, mentoring, giving other people a shove forward."

Short had been told that if his cancer recurred, it was likely to be within the first two years. He had been told, too, that if it did return, there would be no chance of eradicating it. His visits to the oncologist after regular cancer-screening blood tests were nerve-racking: he and Elizabeth would sit in the waiting room, watching the doctor's door. When it opened, they would try to read his expression: did he look like he was about to deliver a death sentence?

Time ticked by. Two years. Then three. Four. Five. Short didn't relax, exactly, but he grew quietly confident that he was out of the woods. "You got to five years and the bets were that you would die of something else," he said. Then in late 2013, he lost his licence after being booked for speeding in his Porsche. Since his office was only a few kilometres from home and he liked to keep fit (he had competed in triathlons), he started running to work.

What puzzled him was how puffed he was getting. Thinking he might have asthma, he visited his GP, who sent him for a chest X-ray. The doctor saw something worrying in the images. As Short remembered, "He said, 'I think you're going to need a couple more tests.' It was like a shiver going straight down me. It dawned on me: the cancer is back."

When I arrived at Short's place one morning towards the end of last year, two cameramen and a sound recordist were setting up in the living room. Elizabeth, radiating good-humoured calm, said the documentary crew had been following her husband for so long that she hardly noticed them any more. She and 23-year-old Mitchell said they wholeheartedly supported the making of the film as well as Short's other campaigning activities - partly because they agreed with him that people who were dying in pain should have the option of asking for medical help to end their lives, and partly because they knew that, having quit work, Short needed an outlet for his energy. "He would drive you crazy, just sitting around the house," Elizabeth said.

Mitchell was proud of his father's crusade and relieved that "it seems to have kept him very happy and directed". Last January, when Short got confirmation that the cancer had returned and metastasised into his lungs, doctors told him he would last nine months at most. He had sailed past that milestone in late October. "This campaign has helped keep Peter alive," Elizabeth said. "There is absolutely no doubt in my mind. Because he's got something so worthwhile to work towards."

Dying with Dignity's Rodney Syme revealed that Short had another ace up his sleeve. "I've indicated to Peter that if he gets to a point where the level of suffering is intolerable for him, and it's unrelievable, I will provide him with some Nembutal so he can die in the way he wants," said Syme. "That knowledge, I think, is one of the things that has kept him going so well. If you can give people with a terminal illness the confidence that they will have control over the end of their life, it's one of the most powerful palliative tools that we have."

Short said he wouldn't know until the time came whether medically assisted suicide was the right path for him. "The challenge is, you do actually have to hold the glass of green stuff and swallow it, knowing it's going to kill you," he said. "Are you going to be, I suppose, brave enough to say, 'I'm going to do this?' "

What was important to him was having that option, because he was pretty certain he didn't want to die while zonked out on morphine. "I place a huge amount of importance on being able to have a coherent final conversation," he said. "And to say goodbye."

About 80 per cent of Australians favour legalising voluntary euthanasia, according to opinion polls. Yet all efforts at legislative reform have failed. State parliaments have rejected some 16 bills in the past 20 years. When the Northern Territory passed legislation in 1995, it was overturned by federal parliament. The bill that Richard Di Natale hopes to have debated later this year - the one inspired by Short - represents the first attempt to use federal powers to give terminally ill people the choice of asking doctors to help them end their lives.

When Short finally got to talk to Tony Abbott on the phone just before Christmas, the prime minister made a commitment to him that members of the Coalition government would be free to vote on the bill according to their conscience. Even so, Queensland Liberal senator Ian Macdonald, who chaired a cross-party committee that received public submissions on the draft legislation, suspects a majority of parliamentarians will join Abbott in voting no. "My gut feeling is that there isn't enough support to pass it," says Macdonald, himself in favour of legalising medically assisted suicide. "I would think about 50 per cent of Labor would be opposed and probably 60 per cent of our side."

Why are parliamentarians out of step with their constituents on this issue? Syme points to a small but vocal anti-euthanasia lobby group. "They've basically come out of the Catholic Church," he says. "They have a lot of money and they're pretty well-organised, so they are a significant group to be reckoned with."

Abbott is a Catholic - he trained as a priest - and Catholics account for half his cabinet (compared with only 25 per cent of the general population). But the significance of this is questioned by Macquarie University professor Marion Maddox, who has written extensively on the intersection between religion and politics in Australia. "A majority of church-going Catholics support a right to voluntary euthanasia," she points out. Yet former Labor prime minister Julia Gillard, a declared atheist, was against it. Maddox suspects politicians of all persuasions are just afraid of rocking the boat. "They are naturally risk-averse," she says.

By December, the cancer in Short's lungs made him feel like he was breathing through a wet sheet, and the tumours in his oesophagus meant he could only eat food that slipped down easily. Nonetheless, he remained upbeat, writing in his blog about the joys of eating ice-cream in bed at midnight, with his much-loved cocker spaniel, Missi, by his side, and about the weirdly liberating sensation of shopping for his last Christmas ("Money is fun to spend when you soon won't need it").

He had planned his funeral and designed his coffin: bright red, with a message to Elizabeth and Mitchell emblazoned on the lid. "I want to go and lie in it," he said cheerfully. "Test-drive my coffin." He hoped he wouldn't actually need the thing until after Mitchell started his first job in February. Short pictured father and son having a celebratory drink together.

As it turned out, he came down with pneumonia on December 21, a couple of days after his conversation with Abbott. His condition deteriorated rapidly, and on Boxing Day, he wrote in his blog that he had been admitted to a palliative care ward, having decided that this was the right option for him. "Not sure when I will send the next blog," he wrote. "Stay tuned. Peter."

On December 29, Elizabeth made the final entry, reporting that her husband had died peacefully early that morning, while she sat on his bed holding his hand. She added that she and Mitchell would continue Short's campaign for choice for the terminally ill.

When I heard about Short's death, I thought of something he said to me: "If I had a magic wand, I wouldn't change any of it. That's not to say I want to die. But you become the sum of the events that you live. And I like who I am now. Not that I didn't like who I was before, but I would be a very different person if I hadn't been through the last six years."

He emphasised that Syme's promise to supply him with Nembutal had made all the difference to the last part of his life, because it had freed him from fear and anxiety. "If I can have an impact on making that happen for everybody," Short said, "that would be the best thing I've ever done."

11 MAY 2015

The following article was in The Age:

As Ray Godbold's terminal illness advanced, he sought the help of Dr Rodney Syme.

A small brown bottle of liquid sits on the table, positioned between the two men.

The glass has no label, but both the patient and the doctor know what it holds.

Cancer sufferer Ray Godbold, left, meets Dr Rodney Syme, of Dying with Dignity Victoria. Photo: Justin McManus

The sick man calls it "control" and the urologist calls it "medication", but the non-prescription substance has another name.

Nembutal was once a common sedative but is now more often used by vets to put pets to sleep. It is also the drug of choice for those who believe in the "right to die" – when physical pain and emotional misery become too much to bear.

Ray Godbold, 59, wipes his runny nose and explains what has led him from his home in Inverloch to this Philip Island holiday shack, surrounded by chittering birds perched in coastal banksias.

He has come to meet with Dr Rodney Syme, 79, the controversial vice-president of Dying with Dignity Victoria, to discuss the final stage of his life and his control over how those minutes unfold.

They first met here 12 months ago. Godbold had stage four gastroesophageal cancer, which had spread to his liver and lymph nodes. They kept in touch as the disease progressed. Now they are back.

Reasons for concern have been mounting. The cancer is taking more of his metabolism away, along with his appetite and energy. His pain and discomfort are growing, with dizzy spells and a few falls.

"I can tell – in myself – that the cancer will eventually…" he pauses, stopping to gather his thoughts. "I'm not as well as I have been."

Both men know how his disease will progress from here.

Catastrophic events such as a heart attack, pulmonary arrest, embolism or severe bleeding are a risk. Liver failure and jaundice are a concern and, as the cancer spreads, cachexia or "wasting".

"If I was here in my underwear, you would see the ravages of the cancer on my body," says Godbold. "If I took my clothes off, you would say I was already cachetic."

Ray Godbold was once a palliative care nurse - he is now dying from gastroesophageal cancer.

Godbold talks the talk because he spent 34 years as a nurse. As a midwife, he has been in the delivery room for the arrival of so many newborns, and he has also been present in homes and hospices as countless others have died in his specialist palliative care.

Godbold knows what a bad death looks like, and he does not want that for himself or his loved ones. And so he wants that little brown bottle on the table. He wants control.

He does not want to meet any new doctors or nurses in his final days. He does not want a drip of morphine and Midazolam to send him into a coma.

He does not want strangers making decisions about his death while he is unconscious, while his family sits for hours, days or even weeks – waiting for his last breath.

He has been positive up until now, but new metastases have come up and there is a creeping "existential despair" about how the end will come.

"My thoughts are starting to get a little bit darker, about death approaching," he says. "I have had a psychological change."

Rodney Syme nods. He points out that doctors cannot measure pain, breathlessness or tiredness. They cannot quantify despair and therefore must accept that only the patient can judge when suffering becomes insufferable.

He has been helping people in this situation for 25 years, by doing what he is about to do.

He hands the bottle over.

"That's medication for you – some Nembutal," he says. "You need to take that by mouth, and you will have total control of that. It's not my intention that you take it. I hope you don't need to take it. But if you run into a brick wall, then that is what I sometimes call the key to the fire escape."

If needed, this small bottle of Nembutal will be enough to end Ray Godbold's life.

The two men shake hands and begin discussing the efficacy of what is, in effect, a black market substance.

Nembutal is a "border controlled drug", possession of which is a breach of law. Penalties range from imprisonment to fines of up to $825,000.

"If you take it," says Dr Syme, "you will go to sleep relatively quickly and peacefully, and you will not wake up."

If Godbold ingests the powerful barbiturate, he will be able to talk to his family for a few minutes, but the conversation will slow. He might yawn deeply, lying there in his bedroom. He will close his eyes at times, and drift into sleep.

In unconsciousness, the drug will slow his brain activity and nervous system. His heart rate will weaken. His breathing will become shallow. He will be dead in perhaps 20 minutes.

"Thank you," he says. "It gives me great peace of mind to know that I've got it in my possession. I very much appreciate what you're doing for me."

What both men are doing is taking a stand. They are mounting a public challenge to current laws that deny people the right to take their own life with the help of a doctor, through medication that can assist their passing in a peaceful and reliable way.

Ray Godbold and Dr Rodney Syme are making a public stand on the "right to die" issue.

They expect a reaction. They want a debate – about what Dr Syme has already done for decades.

Paul Russell, director of HOPE, an organisation devoted to preventing euthanasia and assisted suicide, said it was "frustrating" that any doctor would supply patients with life-ending medication. "Euthanasia is never safe."

One of his main arguments against "right to die" legislation is the inevitable "incremental extension" of those laws.

In the Netherlands and Belgium, he says, people have been euthanised after psychiatric illnesses, botched sex change operations, or fear of going into a nursing home.

The story of Ray Godbold creates an "impetus for change", he says, but equally there are other stories that should create "cause for pause or thought".

In Victoria, it is a criminal offence to incite, aid or abet a suicide, with a maximum penalty of five years' jail, yet no Victorian doctor has been charged with assisting suicide in the past 50 years.

Ray Godbold with his wife, Robyn. Both are nurses, and know what suffering looks like.

Dr Syme says he has been "frightened" to publicly reveal his work as it might get him into "deep trouble", but says the time for hiding has passed.

State Parliament has rejected 16 euthanasia bills over the past 20 years, and although a new inquiry into end of life choices has been launched, Dr Syme feels the issue needs a push.

He is happy to make his actions known, and is even delivering an address on the subject to the annual conference of the Royal Australasian College of Physicians later this month.

Offering people this kind of control, he says, helps relieve angst and potentially extends life by removing anxiety about death. Then finally, as a last resort, medication can be a way out of a protracted and gruesome passing.

"I've set out to challenge whether what I am doing here publicly is a criminal offence," he says. "I believe I can argue that it's not – that it's good palliative medicine."

Ray Godbold at home in Inverloch, tending the garden in readiness for winter.

Ray Godbold is a believer in palliative care. He knows it may be enough for him, as it was for right to die campaigner Peter Short.

But he does not want to be forced to rely on their restrictive processes when the end of his "mortal cycle" is near – when he believes he should have a choice.

"When it comes to the end of my life," Godbold says, "my trust is with myself."

In the meantime, he is painting the house, bedding down the garden for winter, and making sure there are no odd jobs left behind when he is gone.

He wants to be ready for that moment, in every way.

"I want to gather my family around me and just say goodbye, and go my way – not your way," he says. "Now's the time."

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

11 MAY 2015

The Age editorial:

The case for legalising physician-assisted death, under rigorously regulated circumstances for terminally ill people suffering intolerably, is overwhelming. Today's compelling and poignant article by Konrad Marshall about cancer patient Ray Godbold receiving Nembutal, a banned drug that can be used to peacefully end human life, from urological surgeon Dr Rodney Syme marks the continuation and indeed escalation of The Age's longstanding support for such legislation.

It is absurd and immoral that decent, compassionate medicos such as Dr Syme, a long-running campaigner for change who openly admits giving many terminally ill people the means and knowledge to end their lives, are technically criminals in our sophisticated democracy. Surveys have long demonstrated as many as four in five citizens support such a civilised change to physician-assisted death.

Dr Syme is, in effect, challenging the authorities to enforce a law he and we believe a jury of Australians would be loathe to apply. Far better for the federal Parliament to meticulously enact the right of terminally ill people with excruciating physical or emotional pain to choose the timing and manner of their death.

There is ample opportunity to mandate thus, and such laws exist elsewhere in the world. The draft legislation introduced last year by Greens senator Richard Di Natale, a medical doctor who last week became his party's leader, is a timely trigger for the change.

Senator Di Natale's bill was largely inspired by the plight of Melbourne man Peter Short, who died late last year from oesophageal cancer, an illness similar to that afflicting Mr Godbold. Like Mr Godbold, Mr Short was given, by Dr Syme, the means and knowledge to choose the timing of his death. In the end, he did not take that option. And herein lies perhaps the most powerful argument for medically assisted death – everyone who is given the choice is immediately and profoundly helped because it removes fear and anxiety. Only about 30 per cent opt to end their own lives.

After a long public campaign, Mr Short convinced Prime Minister Tony Abbott to telephone him. At the end of a lengthy conversation, Mr Abbott rightly promised Mr Short that Liberal Party federal parliamentarians would be given a free vote should Senator Di Natale's bill be introduced. About the same time, the cross-party Senate committee that held nationwide hearings on the proposed law declared that it, too, supported a free vote. Support is growing; only last week the Victorian government announced an inquiry into such change. The moment is propitious. Senator Di Natale's elevation to party leadership might be used to add impetus.

Another fundamental reason for the change is to prevent the undue provision of the medical means to end life to those who should, rather, receive help to recover. This newspaper strongly opposes the views of voluntary euthanasia advocate Dr Philip Nitschke, because his organisation, Exit International, helps people who are not terminally ill to die by suicide. It is in the public interest to pass legislation that permits doctors such as Dr Syme to offer relief to terminally ill patients, but prevents those like Dr Nitschke from facilitating the death of those who should receive treatment.

The Age holds that life is precious, and should be protected – but not at all costs. There are clearly cases when the right thing to do is to recognise the right of terminally ill people who are suffering dreadful physical, psychological and emotional torment to die peacefully at a time of their choosing. Our politicians have a duty to do this without further delay.

LINKS

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

Exit International (Philip Nitschke is associated with this group)

Red Jos: HUMAN RIGHTS ACTIVISM

Mannie and Kendall Present: LESBIAN AND GAY SOLIDARITY ACTIVISMS

Mannie's weblogs may be accessed directly by clicking on to the following links

MannieBlog (to December 2005)

Activist Kicks Backs - Blognow archive re-housed - 2005-2009

RED JOS BLOGSPOT (From January 2009 onwards)

This page created on 29 JANUARY 2015 and updated on 3 OCTOBER 2016

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