November 10, 2014
Right to die: Choosing an end to life
Right to die: Choosing an end to life – More people, terminally ill or not, are deciding how and when they want to die. Should this be a crime? By Julie-Anne Davies for The Age.
The desperation of the dying is something Melbourne woman Catherine Ringwood knows intimately.
Much of her adult life has been spent in its company, first as a nurse then later as a counsellor for the pro-euthanasia organisation, Exit International.
It became personal 15 years ago when she was diagnosed at just 49 with leukaemia.
Since then, Ringwood has fought hard for her life: chemotherapy, radiotherapy, then a mastectomy five years ago after an out of the blue breast cancer diagnosis and finally, gratefully, as a human guinea pig in a cancer drug trial.
A month ago Ringwood, now 64, was told by her doctors at the Peter MacCallum Cancer Centre that the disease was back for good.
“The drugs aren’t working any more and even though I am a positive person, I know I am pretty much out of medical answers,” she says.
“I feel some trepidation and obviously a great deal of sadness but I am also so glad I have thought deeply about how I want to die and had the conversation with those I love.
“If I get to a point where I’m unable to walk, toilet myself, live independently then this would be unacceptable and I would choose to die.”
Like many living with a terminal illness or with incurable suffering, maintaining control over their life – and death – is the most important thing.
Her decision to speak publicly about her own end of life plans is crazy-brave in the current climate.
Since April police have raided homes of Exit members in South Australia, Queensland and Western Australia, searching for the banned euthanasia drug, Nembutal.
A few weeks ago, a Victorian couple had a surprise visit from two Australian Federal police officers after Customs intercepted a parcel from Thailand containing a banned drug.
“Let them put me in jail, a lot of people in Exit are frightened but not me – can you imagine?
Terminally ill woman in jail for victimless crime. Let them try,” Ringwood says.
Even so, her “action plan” is a secret and she makes it clear, she isn’t about to jeopardise that.
“I have the ‘information’ I need to make my own end of life choice and that’s what is keeping me sane right now,” Ringwood says. “It would be a major catastrophe if that was taken away.
“Having a plan means that one day, I can give my hematologist a hug and thank him.
I’ve never discussed this with my doctors though, because I am frightened they will say I’m depressed, and feel its one more thing they have to try and fix.”
Information, knowledge, action plan, peaceful pill are all euphemisms used by scared, often terminally ill or elderly but sometimes perfectly well people as code for Nembutal.
It is the holy grail of the voluntary euthanasia movement used here by vets to put down animals and by legal euthanasia programs in Europe to end the lives of people.
It’s the drug that turns otherwise law-abiding people into drug smugglers, death tourists, law breakers.
At the beginning of the 21st century, advances in medical technology have made it possible to maintain life where it was previously impossible. But those advances have pushed us into new medical, moral and ethical territory.
With the use of sophisticated life support systems, is life being sustained or is death being deferred?
The drugs aren’t working anymore and even though I am a positive person, I know I am pretty much out of medical answers.
I feel some trepidation and obviously a great deal of sadness but I am also so glad I have thought deeply about how I want to die and had the conversation with those I love.
It is an issue many liken to the abortion debate of the 1960s and one which the medical profession, the church, hospitals, nursing homes, and parliaments as well as the broader community, is being forced to confront.
All agree the rights of the dying is the hot ethical debate of the times and will only intensify as the pro-rights baby boomer generation finds itself facing death.
There have been attempts at law reform in every state and territory bar Queensland.
In 1996, Australia became, briefly the first jurisdiction in the world to legalise euthanasia for the terminally ill. It was overturned nine months later by the Howard government.
Now, a Greens-sponsored draft dying with dignity bill is winding its way through the committee process of the federal Parliament. It is the first federal attempt at legislation.
One of its architects is South Australian GP turned senator Richard Di Natale. He says the time has come for an honest national conversation on end of life choices.
“Look, we know its happening in an unregulated space behind closed doors so there is a strong argument to say lets do it openly and try and break down some of the taboos around death and dying,” Di Natale says.
Nearly two decades of reporting from the frontlines of the euthanasia debate has taught me that fear of dying, not fear of death, is the issue that motivates ordinary people to do extraordinary things.
Stashed bottles of barbiturates, clandestine trips to dodgy Mexican border towns, failed suicide attempts, money lost in scam internet deals.
Fear of pain, but also the indignity of being trapped in a body which no longer functions but where the brain is as active as ever, can transform the most law abiding and conservative citizens into fugitives.
Not all people interviewed for this story were prepared to be identified. They don’t want to risk having their drugs found, scared relatives alerted or their doctors tipped off.
One couple – we’ll call them Carol and Bill – are in their 60s and in good health, and say they recently imported cyanide from Thailand after researching the subject carefully.
This is a new and alarming development in the euthanasia drug black market. Testing showed the drug was not pure and so Carol and Bill, like informed consumers, complained to the supplier and another package was sent.
They say they are being responsible by planning for their future and liken it to writing an advance care directive or taking out life insurance.
“We’re not alone, many of our friends feel the same way,” Carol says.
“It’s our generation I guess, we’re not used to having to put up with pain, we are used to choice. Its interesting how many people have made their plans, equipped themselves and now can get on with their lives.”
Her own mother committed suicide by drinking Nembutal just before her 90th birthday. “She was not sick, she was not depressed, she just decided it was time to die.
It was not a secret, we all knew her feelings because she valued life, she had meditated on this decision for a very long time. It was a textbook case of rational suicide.”
But Carol’s mother died alone. She rang her daughter after she had swallowed the medicine but no one was home. “She left a message on the answering machine saying she was sorry, she was tired and it was time to go.
She was protecting us to the end by not involving us. I just wish she hadn’t had to go through that last hour alone.”
Earlier this year a fascinating correspondence took place between the former chief minister of the Northern Territory and passionate voluntary euthanasia supporter, Marshall Perron, and the South Australian coroner, Mark Johns.
Perron wrote to all Australian coroners seeking their views on what he termed “an unrecognised phenomenon in Australia … the growing incidence of rational suicide by the elderly and the terminally and hopelessly ill”.
He was trying to gather some facts to support his contention that too many ill people are choosing to end their life prematurely and alone while they are still physically or mentally able.
“There is anecdotal evidence that such disguised deaths occur regularly…” he wrote.
Only Johns replied. “Much of what you say is quite correct and accords with my own experience,” he said. ” I agree that these deaths are a sad reflection on our society and the choices that many elderly people face…
“Whilst many coroners might privately agree that voluntary euthanasia ought to be available, coroners, like other members of the judiciary, should not involve themselves in political debates that are as hotly contested as that one.
“I do agree that the public is generally unaware. They rely on the people they elect to lead them to inform them of such matters and instigate debate.”
Dr Rodney Syme has just come from the bedside of a terminally ill man who took his life the night before. Syme offers few details because he is aware that the police might turn up asking impossible questions of a grieving wife.
“I was there because I’d offered to support this person and to make sure the process went OK. We had a long conversation for an hour and half, going over it all again and then he took the medication and it was all over in about 20 minutes. I spent another three quarters of an hour with the wife talking over what had happened and she offered me a glass of scotch and I had it.”
Suicide is not a crime in Australia but assisting someone to die is. Is just being present a felony?
“The police have told me its not but aiding and abetting, for example handing someone a drug to take, is illegal,” Syme says.
Personally, he has been goading police to arrest him for years. He admitted giving Nembutal to former Victorian journalist and Exit Member Steve Guest in 2005 while he was dying of esophageal cancer but the police have said there is not enough evidence to press charges.
Dying with Dignity Victoria – Syme is vice president – represents the mainstream “physician assisted dying” side of the debate which is the position the Greens draft bill espouses. They want law reform so that doctors who currently work in the murky grey zone of “terminal sedation” can practice without fear of prosecution. And the terminally ill and chronically suffering can have a peaceful, painless death at a time of their choosing.
“Medical assistance at the end of a person’s life is just good palliative care,” Syme says. “It’s not illegal to commit suicide, to refuse medical treatment including refusing artificial food and fluids, to ask for medical treatment to be withdrawn – there is only this missing bit at the end – to allow people a dignified death with assistance by a doctor.”
Gwen Nitschke wants to die but the very last person who can help her is her son, Philip Nitschke, the world’s most controversial voluntary euthanasia advocate and, currently, a suspended doctor fighting for his medical registration and reputation.
It’s deeply ironic that the 94-year-old, who has lived in a nursing home in Adelaide for the past six years and is still sharp as a tack, wakes up every morning and announces to the world that she wishes she was dead.
Her son, who has written the book on ways to die as well as being the first doctor in the world to practice legal physician-assisted dying, cannot help her.
Gwen is not terminally ill, she is like so many elderly Australians, slowly dying.
She can’t move about without using a walking frame or wheelchair and she is lonely; living to nearly 100 means she has watched most of her friends go first.
“I am tired and I just want this to end,” she says in a phone interview the week before her son’s appeal against his suspension.
“I wish I’d done something earlier to help send me on my way but I left my run too late.”
Nitschke says his mother feels stranded.
“The weekly visits out to the nursing home are invariably difficult, stressful and hard going for her and us. Waiting is a form of suffering and that’s what she is doing.
I feel quite sad that I can’t give her the drugs, I feel upset by her situation.
She looks at me each time and says the same thing. ‘It’s just my luck to have you as a son’.