With voluntary euthanasia making news in WA once more, we look at the polarising debate over a person's right to die on their own terms.
For Laurie Strike, his YouTube video was a last resort. "In 2010, I was diagnosed with an aggressive melanoma. I've had three operations since then, none of them have been successful, and over the last couple of months my lifestyle has dropped quite dramatically. I now feel I'd like to terminate my life and if someone out there has a bottle of Nembutal they can give to me or sell to me I'd be quite grateful."
The 84-year-old Perth man garnered international attention with his appeal for drugs to end his life peacefully – his plea was successful and he died at home surrounded by his family on April 7 this year.
Olive Pinkerton, who has inoperable bladder cancer, made a similar plea in April at a Perth meeting held by the controversial end-of-life choices information and advocacy organisation Exit International. One member at the meeting was going to help 86-year-old Olive but the recent police raids on the homes of various Exit members – to seize Nembutal that police suspected had been illegally imported – quickly put a stop to the offered assistance.
Nembutal is a powerful barbiturate regularly used by veterinarians to euthanise animals, and is known as the medication beyond any other that can provide for a peaceful death. Elderly Australians who want to set their own strategy for death are increasingly purchasing Nembutal on the black market, traditionally in liquid form from Central and South America, and more recently in powdered form from China.
Olive has not gone public with her plea or tried purchasing Nembutal online, because she doesn't use a computer or the internet, and won't ask any of her five children or 14 grandchildren to help for fear they could face charges. She hopes she can get her hands on the 'peaceful drink' before she is unable to act or think straight. "I just want something to take my life before the pain becomes unbearable," she says.
In all states of Australia, suicide is not a crime, but for anyone who assists in suicide, the penalties are savage, even if they are acting out of compassion and love. In 2012, 81-year-old Herbert Erickson was charged with the murder of his de facto wife after a failed mercy-suicide pact. After she suffered a stroke, Herbert had cared for 73-year-old Julie Betty Kuhn for years. She also had chronic arthritis, a severe form of paralysis, and was confined to a wheelchair.
Herbert admitted to smothering Julie before attempting to electrocute himself. "I don't want to go to jail, I want to be with my partner, but I am here, worst luck," he told reporters after his court appearance. Herbert was on bail when he was found dead in the water at Floreat Beach.
The case renewed the debate on voluntary euthanasia. WA Premier Colin Barnett called the situation very sad, but said he did not believe euthanasia should be legalised. State Opposition leader Mark McGowan spoke out in favour of voluntary euthanasia. "If people are terminally ill, they are in great pain and they make a choice personally to end their suffering, well then I would support them. That means I would vote for a bill that provided that opportunity."
There have been seven attempts to bring such a bill to WA Parliament, the most recent in 2010 when Greens MLC Robin Chapple introduced his Voluntary Euthanasia Bill for the second time. It became the first time the WA Parliament debated such a bill – all previous bills had been thrown out undebated. Robin believes this indicates there has been progress on the issue. "Nationally the debate has been lifted. Many other states have now put forward legislations dealing with dignity in dying."
Just last year, three state governments considered bills advocating voluntary euthanasia. In South Australia last November, independent MP Bob Such's Ending Life with Dignity (No.2) Bill 2013 ran out of time when Parliament rose for the last time before the March 2014 election. In Tasmania in October, the Voluntary Assisted Dying Bill 2013 introduced by Labor Premier Lara Giddings and Greens leader Nick McKim was defeated 13-11. In NSW in May 2013, the Rights of the Terminally Ill Bill 2013 was defeated in the Upper House 23-13.
Over the last 20 years, voluntary euthanasia bills have been proposed in all state parliaments except Queensland. All these bills have failed from a lack of majority support, except in the Northern Territory where legislation was passed by one vote. The Rights of the Terminally Ill Act 1995 came into effect in July 1996, becoming the first law anywhere in the world to legalise voluntary euthanasia.
The law allowed a patient to be euthanised, provided the patient obtained signatures from a psychiatrist, a specialist in their illness, and a palliative care specialist. It lasted just nine months before being overturned by the federal government's Euthanasia Laws Act 1997.
One of the main campaigners in the Northern Territory was Exit International founder Dr Philip Nitschke who, in response to the Australian Medical Association's claim there were no doctors who supported voluntary euthanasia, got together 20 doctors in the NT who did support it.
When the law was passed, it became crunch time for Philip, to whom all eyes turned. "It was a difficult law to use and it was damn hard for people to qualify because of all the safeguards," he says.
Sixty-seven-year-old stomach cancer sufferer Max Bell drove his taxi from Broken Hill to Darwin to make use of the law. Far from the smooth process Philip thought it would be, Max languished in hospital for three weeks while Philip rang every specialist in the NT, desperately trying to get the three signatures Max needed to make him eligible to use the law. "None of them would break ranks with the AMA, which was running an effective but unnecessary scare-mongering campaign," says Philip.
The Australian Medical Association (AMA) remains opposed to voluntary euthanasia. "What we have at the moment is a lot of information and rhetoric out there about something that frightens everyone," says AMA WA president Dr Richard Choong.
"Most people are very frightened of dying. If they have some disease, they think it's going to be a horrible death. And that's not true. Medicine has come a long way from the dark ages and a considerable amount of time, effort and research is spent on the moment of transitioning to death. We have whole specialties based around assisting people during this time, the last moments of their lives. Palliative care physicians are invaluable to the whole of medicine."
Richard says there's a very fine line between voluntary euthanasia and suicide. "The community disagrees with suicide and we spend a lot of money trying to lower our suicide rate. Is it only acceptable if you have a horrible disease or is it going to always be not acceptable? It isn't clear and there's no consistency. Most people would say suicide is not a good thing. Then why in certain circumstances are we saying it is a good thing?
"The AMA doesn't agree with euthanasia because we don't agree with suicide, be it assisted or not. The community has to have its own debate and we're going to be part of that debate."
Angry and very sick after his fruitless journey, Max Bell drove back to Broken Hill and camped in his unfurnished house for three weeks before being moved to a palliative care bed. "There, heavily sedated with morphine, Max died over a period of three days," says Philip. "He died precisely in the way he most dreaded, slowly and with the process out of his control."
After Max's story Road to Nowhere aired on ABC's 4 Corners, Philip was contacted by a specialist in Darwin who said if there was anyone else wanting to use the law, he would help. "It showed the power of the media," says Philip. "Max's quest failed but the TV coverage of Max's dying convinced the first specialist surgeon in Darwin to break ranks."
In September 1996 Bob Dent, who was terminally ill with prostate cancer, became the first person in the world to die by legal, lethal voluntary injection and was the first of four people Philip helped to die under the NT law. Philip built a machine, which administered Nembutal when the patient pressed a button. "It got me out of the picture and allowed other people into Bob's space," says Philip. "His wife held his hand."
The final message displayed by the computer that delivered the fatal dose was: "In 15 seconds you will receive a lethal injection and die. Do you wish to proceed? YES/NO."
Before his death, Bob wrote an open letter: "The Church and state must remain separate. What right has anyone, because of their own religious faith (to which I don't subscribe), to demand that I behave according to their rules until some omniscient doctor decides that I must have had enough and goes ahead and increases my morphine until I die? If you disagree with voluntary euthanasia, don't use it, but don't deny me the right to use it if and when I want to."
Polls consistently show around 70-80 per cent of Australians, and up to 90 per cent of West Australians, believe a doctor should be able to provide a dying person with a lethal drug to end unrelievable suffering at the end of their life.
"I think it's puzzling for the community that not withstanding what the public feels about this issue, politicians at some level don't support those views," says Robin Chapple. "You'd think the public is electing, on average, people who represent community views.
"People who don't support it generally fall into two categories. There are those who base their view on religion, saying supporters of voluntary euthanasia should not impose their will on God or society. And there are those who are afraid of some form of political backlash.
"As supporters, we do not wish to impose our will on others – it merely allows people to follow a personal preference. Whereas I believe the churches and their minions in Parliament tend to want to impose their will on others."
Robin says voluntary euthanasia legislation is a way of legalising what is already practised by many doctors. "There have been a number of reports from people within the medical profession who have provided the dose of double effect – prescribing morphine or opiates to relieve suffering at such a level that the outcome is most probably death," says Robin.
In April this year, Melbourne doctor and vice-president of Dying with Dignity Victoria, Rodney Syme, publically admitted giving Nembutal to terminally ill man Steve Guest two weeks before he used it to die in his home nine years ago. It has long been known Rodney helped the oesophageal cancer sufferer and many other patients to die, but it was the first time Rodney admitted providing Nembutal to anyone.
After becoming increasingly frustrated by the failed attempts by state politicians to introduce voluntary euthanasia law, Rodney says he's ready to be charged because a court case could set
a legal precedent for doctors who are too scared to help terminally ill people end their own lives.
Robin Chapple is likely to re-introduce another voluntary euthanasia bill to WA Parliament in the next year, to expose the issue to the new members of the Upper House. "We are reviewing the Bill at the moment," says Robin. "There is quite a lot of pressure on me to allow for self-administration, but at this stage I have not seen anything that would lead me to do that."
While the WA Voluntary Euthanasia Society (WAVES) is supportive of the Bill, vice president Ranjan Ray says it doesn't go far enough. "It's a step towards a full independence of choice for anyone who wants to decide it's time to go," he says. "But under this Bill, if you're not within two years of dying, you have to go on living no matter how miserable your life is.
"From our point of view, the ideal legislation would be for anyone who suffers (mentally or physically) more than one wishes to bear, to be able to ask for help from a physician to die."
Ranjan points to the Advance Health Directive (AHD) as another step in the right direction. Also referred to as a living will, an AHD is a legal document that enables a person to make decisions now about the treatment they would want – or not want – to receive if they ever become sick or injured and are incapable of communicating their wishes. In such circumstances, the AHD effectively becomes their voice. The term 'treatment' includes medical, surgical and dental, including palliative care and life-sustaining measures.
"It gives the right to withdraw treatment, in the hope it can cause death," says Ranjan.
Dr Richard Choong says the AMA will continue to watch the outcomes in countries that have taken the move to legalise voluntary euthanasia. As the situation stands currently, assisted suicide is legal in Switzerland, Germany, Albania, Colombia, Japan and in the US states of Washington, Oregon, Vermont, New Mexico and Montana. Euthanasia is legal in the Netherlands, Belgium, and Luxembourg. Belgium recently extended its euthanasia law to children, which Richard says shows their moral compass has gone wrong.
It's part of the 'slippery slope' argument – that legalising voluntary euthanasia will eventually allow euthanasia for children, people with psychiatric illnesses or in non-voluntary circumstances where people are not able to express their view at the time of a decision.
As a legal practitioner, Nick Goiran MLC is convinced it is a legal impossibility to protect against involuntary euthanasia once voluntary euthanasia is allowed. "Put simply, because we know that things like elder abuse and medical malpractice exist, it will always be the case that so-called 'voluntary euthanasia' laws will be abused," says Nick. "This has sadly been proven in the few jurisdictions which allow this to occur. Most importantly I am concerned about the message we send to people, if we start saying that some lives are worthy of suicide.
"During public debates calling for legalised voluntary euthanasia the stress is always on extreme cases involving intractable physical suffering. However, in practice in all jurisdictions where euthanasia or assisted suicide has been legalised it has extended well beyond these cases to include psychological suffering (such as depression), disability (such as blindness) and simply being tired of life.
"Physical pain is rarely even listed as a concern in most cases," says Nick. "For example, in Oregon, of the 673 people who had died from ingesting a lethal dose of medication as of January 2013 [since the Death with Dignity Act (DWDA) was passed in 1997], only 23.5 per cent mentioned 'inadequate pain control or concern about it' as a consideration."
Of the 77 DWDA deaths in Oregon during 2012, 67.5 per cent were aged 65 years or older and the median age was 69 years. As in previous years, most were white (97.4 per cent), well-educated (42.9 per cent had a baccalaureate degree at least), and had cancer (75.3 per cent).
In the Netherlands in 2012 the number of reported euthanasia deaths increased by 13 per cent to 4188. A large majority of the euthanasia requests (3251) came from people with cancer; people with dementia were involved in 42 cases; and 13 had severe psychiatric problems. Euthanasia accounts for more than 3 per cent of all deaths in the Netherlands.
In Britain, where euthanasia is illegal, a 2012 study discovered that as many as 57,000 patients each year die without being told that efforts to keep them alive have been stopped.
Ranjan says every retired politician he's spoken to seems to believe something should be done to legalise voluntary euthanasia, yet in Parliament they don't seem to want to do anything about it. Ranjan says the lack of support from politicians is forcing people to seek other methods to end their lives, including hanging, which is the most common method of suicide for the elderly.
"The way parliamentarians are behaving is also pushing people towards Dr Nitschke and his Exit International organisation," says Ranjan. "People are suffering and Dr Nitschke is providing a service. He is telling people there are more peaceful options than hanging."
Exit International holds regular workshops in Australasia, Europe and North America. The average age of Exit members is 75 years and most members are healthy. They all believe in a person's right to make informed decisions about when and how they will die.
Controversially, Exit provides access to end-of-life information, which Philip believes is as important as legislative change. Via workshops, clinic programs, online forums, and through The Peaceful Pill eHandbook (the hard copy is banned in Australia) Exit provides information about various "reliable, peaceful and dignified" end-of-life approaches, such as using the drug Nembutal, as well the nitrogen method of self-deliverance, which Philip says is the only method that is totally undetectable.
Philip, who has often been referred to as Dr Death, has been heavily criticised over the years. Although Exit tries to restrict its information to people aged 50 years and over or those whom are terminally ill, there's nothing to stop the information falling into the hands of young people and those with mental illnesses.
In 2010, the Victorian Institute of Forensic Medicine found that in the previous decade 51 people had killed themselves using Nembutal, including people in their 20s, 30s and 40s. In 27 of the 38 cases closed by coroners there was no reference to the deceased suffering significant physical illness, deteriorating health or chronic pain, prompting speculation that people had used Nembutal to commit suicide for psychological or psychiatric reasons rather than chronic physical pain or terminal illness.
Philip acknowledges the potential downside but says it shouldn't be a reason to do nothing. "Providing this information is immensely beneficial to a large group of society," he says.
Albany man Rupert Ward is one of 12 Exit members whose homes were raided by police recently. Police found traces of Nembutal, and Rupert has been charged with possession.
"I'm scientifically literate, a hard-nosed rationalist," says Rupert, who while suffering from acute coeliac disease and severe urinary distention that took nearly 40 years to diagnose, is happy and has never had bad depression. "I just want to have control of the end of my life.
"Because I've got the Nembutal now, I have full autonomy over my life choice. Even though a large percentage of people go through palliative care with reasonable pain relief, it's well documented that palliative care cannot ease all suffering in all situations. I don't want to go into that 'lottery' where, if you lose, you could end up in agony. I've heard cancer patients describe levels of pain beyond description, totally beyond your imagination. That freaks me out. I don't want to risk that."
The question is a simple one – do we have the right to take our own lives? If I am in pain and suffering or simply tired of life, who has more right than me to say no?
The debate is endlessly fascinating, calling into question core beliefs and contradictions most of us would prefer not to think about. So when we found out that Philip Nitschke was in town as a contender in the recent senate elections, we immediately invited him to the office to hear more about his work assisting Australians with their right to die.
[Incidentally, his bid for a senate seat in WA was not successful, but after nominating for senate he received numerous invitations for coffee with political heavyweights who had never previously returned his many calls.]
The surprising reality is that legally we do have the right to die. In WA and all other states, suicide is legal. Although in hindsight it makes sense, it is difficult to imagine an effective deterrent for someone threatening to kill themselves.
Conversely, WA has some of the toughest penalties in Australia for anyone 'assisting' suicide. It is one of Nitschke's motivating factors and a key point he makes to the hundreds of attendees at his seminars in WA. If you care for your loved ones, take responsibility for your own death, and don't put those left behind at risk.
He is also motivated by method, and giving those in need a dignified end to their lives. Without assistance they are left to their own limited means, including hanging, cutting wrists, overdosing and asphyxiation. Apart from too often being unsuccessful, it is a horrible and humiliating end for them
and their loved ones to deal with.
So Nitschke's point is this: if suicide is not illegal, then why not give those of sound mind and reasonable motivation the tools with which to end their lives with dignity? And that is what he has done. Through his website you can find reliable sources of powdered Nembutal (often from China) which, when mixed with water and consumed, will put you to sleep and end your life. The site even provides testing facilities in South Australia to confirm the powder you have received is genuine.
Nitschke says it also brings great comfort to the living and, paradoxically, improves the quality and length of life for the terminally ill. Patients in great pain can relax knowing that if and when things get too much, they have an exit strategy that is proven, effectively risk-free and won't burden those closest to them.
And in many ways it avoids the rigorous checks and balances, the legal and medical interviews required by any proposed legislation which, in Nitschke's view, are the last things someone wants to think about when considering taking their own life.
So in many ways, he has achieved his main objectives. But not all... A major source of stress for the elderly is the fear of dementia, and becoming mentally incapacitated and an emotional and financial burden for their family. Philip believes this fear pushes many to take their own lives before they are ready because they fear losing the capacity to do it at a later time. And, with the resulting risk of a murder charge, very few are prepared to leave it to their families.
The only solution is a living will, a document which states that once a point of incapacity and inability to communicate is reached, the individual is to be euthanised.
It is to this end Nitschke continues to fight. The arguments for euthanasia are clear, explaining why the vast majority of Australians are in favour. The arguments against are varied, ranging from entrenched religious beliefs to valid concerns of misuse.
Traditionally, many cultures have allowed for the sick and elderly to take their own lives in their own way and in their own time – long walks in the snow and such. But contemporary religion takes a dim view, and 'religious beliefs' mire the debate at the highest level. It is also a tough issue for politics. The political right is the most vocal opponent to change. While the majority of Australians support euthanasia, it probably won't change their vote. Those in opposition tend to be vehement and vocal, and for them, it is a vote-changer.
Then we have society's entrenched view, strongly backed by the Australian Medical Association (AMA), of life at all cost. While society as a whole has no issue with euthanasing an animal in pain, we are prepared to tolerate endless suffering of loved ones in order to extend the lives of the terminally ill for days, months and sometimes even years. But as with the religious argument and all 'absolute views', there is no answer to the 'life at all cost' point of view and sadly, too often, this is where the argument ends.
There is the question of abuse – what if the legislation is used by friends and family to coherce 'loved ones' into taking their own lives? Given the checks and balances proposed and lack of evidence from other countries where legislation is working, this seems a moot point. However, there are valid concerns regarding youth and the mentally ill, taking their lives in a temporary fit of depression. The counter-point is that legislation requiring medical and legal checks would have a greater chance of leading them to the counselling they need, and prevent suicide being the biggest killer of young men and women in Australia, as it is today.
This is a difficult topic, especially for those who have lost loved ones through suicide, and the easy option is simply to say 'no'. But it seems cruel and bizarre to live in a society where we refuse people the right to end a life of pain, to have a dignified death and to avoid being a burden to their loved ones. I certainly want that option for myself when the time comes and see no reason to not to afford the same comfort to others, especially our most treasured elderly.
For more on Philip Nitschke, visit exitinternational.net/page/OurDirector.
