This philosophical split is not new, and it is enduring. For as long as I can remember, I have been criticised each time I have dared to suggest that you don’t need a person in a white coat alongside your bed when you die. That is, you don’t need a doctor to die—you can actually do it yourself.
In Australia, the fissure first emerged in Melbourne as early as 1998, when the Voluntary Euthanasia Society of Victoria, then led by Dr Rodney Syme, ‘distanced’ itself from what were reported as my ‘more direct’ methods—the so-called ‘technical’ solution—and the development of the ‘suicide’ or ‘peaceful’ pill.1 By early 2002 the split was widening, with the Melbourne society deciding that a person’s right to access information (and thereby the means of a peaceful death outside of the medical profession) was ‘incompatible’ with their charter. The controversial death in 2002 of healthy retired French academic Lisette Nigot drew more attention to the issue. Nigot took her own life purely because she was turning eighty and had long said ‘eighty was the time to go’. Rational suicide, with no underlying medical reason. The Nigot controversy would be repeated at the end of 2012, with healthy eighty-nine-year-old Exit member Susan Potts. Susan was the elder sister of Sara Henderson, of Bullo Station, who had written the best-selling From Strength to Strength about her own struggle with breast cancer. Like Lisette, Susan also decided that rational suicide was for her, and elected not to involve the medical profession in her death.
As the split widened, Rodney Syme laid his cards on the table, stating that his main concern was to ensure the medical profession remained central to the death of a person. ‘Euthanasia’, he said, was a ‘medical problem’ that needed the ‘right kind of doctors’ to assist those who wanted to die. A peaceful pill, Syme wrote in his book, was a ‘pathway to disaster’.2 Hearing him on the radio, I remember thinking to myself, At last, you’ve made your position clear.3
However, there is more to Rodney’s objection to my non-medical, do-it-yourself approach than meets the eye. For almost two decades, he has been beseeching the law to take a good hard look at his involvement with dying patients, actively seeking to be investigated and charged. He even appeared in fake handcuffs on the front cover of the Bulletin magazine, with the sensational headline ‘Arrest Me’, after admitting to giving lethal drugs to several terminally ill patients. While some may see this as a brave doctor challenging the law while helping the sick, to me it shows an insufferable paternalism that strips the patient of their last vestige of control. Syme, or any doctor, who gives Nembutal to a dying patient may argue that this is fine because, under the medical model, it is the doctor who knows best and who should make the decision. However, this means it is the doctor, rather than the patient—the dying person—who determines who should die peacefully and who should not. In this scenario, no rational adult person can ever be entrusted with the decision about ending their own life. This focus on the central role of doctors has restricted the euthanasia debate and turned it into an argument about disease, mental capacity, safeguards and access.
Who is sick enough to qualify? Who should be rejected? From this viewpoint an important point is lost: death is not a legal nor a medical procedure; it is a natural, social and cultural event that we will all experience. And it is one that we should not abandon control of. Who says that the legislators and the medical establishment should be the gatekeepers? Not me.
I believe that every rational adult should have access to a reliable, peaceful and lethal pill that one keeps at home. Use of this pill would only be considered when one finds that the quality of life is such that death is the preferred option. This is how it should be, how it could be. Surely the most effective way of ensuring that control of the process remains with the person who wishes to die. It is a radical proposal that de-couples death and disease and one that acknowledges that there can be powerful and compelling non-medical reasons to seek death, reasons that have nothing at all to do with disease. Surely this could be seen as a measure of maturity in society, the exact antithesis of the controls of a nanny state. I suspect, however, that the devolution of responsibility to rational elderly adults for the timing and manner of their deaths is not a goal many doctors or politicians will seek.
I have also found myself in ideologically treacherous waters on the other side of the world. In May 2009 Exit held its first workshop in Glasgow. The meeting, at the Glasgow Unitarian Church, was well promoted by the media and well attended on the day. While there was the usual scaremongering and moral panic from the traditional churches, we also had an extra adversary, in the form of Dr Libby Wilson, convenor of the Scottish pro-euthanasia group FATE (Friends at the End). In both television and print, Libby castigated me for suggesting that every rational adult over the age of fifty should be entrusted with their own end-of-life decisions. She said, ‘Most people feel quite revolted by [his approach].’4 She told the Glasgow Herald: ‘He’s done a terrible lot of harm in Australia … [T]he reaction to him [there] has been absolutely draconian … He makes it slightly difficult for those of us who want to stick to our ethical standards.’5 All the while, Dr Wilson was billing herself as ‘dedicated to promoting knowledge about end-of-life choices’.
A month after my Glasgow workshop, Wilson purchased a subscription to The Peaceful Pill eHandbook and, later, she bought multiple print copies as well. What I fail to understand is why it is all right for her to have this information, but not others? It is more than just hypocrisy; it is using medical privilege to exclude the majority of the population. These arguments were played out compellingly in Janine Hosking’s documentary, Mademoiselle and the Doctor. I met retired French academic Lisette (Mademoiselle) Nigot in Perth in 1998. She explained that although she was not ill, she did not want to live past the age of eighty. Four years later, and shortly before her eightieth birthday, she ended her life with barbiturates she had acquired. In those four years I got to know her well. She constantly challenged my right to withhold information. Any suggestion that I knew what was best for her, because of my medical training, was dismissed with contempt; at one point she threatened to sack me as her doctor if I didn’t impart the information that I had and she wanted. I could see no legitimate reason to argue; it was her decision to make, not mine.
With friends like Drs Syme and Wilson, you’ve got to ask, who needs enemies? Another UK adversary is retired GP Michael Irwin. A former chairman of the UK Voluntary Euthanasia Society (now called Dignity in Dying), Irwin had been keen to find out all he could about Nembutal, contacting me in 2008 to provide him with details on sources of the drug in Mexico and Southeast Asia. It came then as something of a shock to learn a year later, during our 2009 UK tour, that he was now accusing me in The Telegraph of being ‘totally irresponsible’ by telling the rational elderly adults at my workshops how they might get Nembutal from Mexico. But why should he be the one who decides who should, or should not, access such information? More recently, Irwin has established a new group that continues to place the medical profession firmly at the centre of the decision-making process. Under his model, a rational elderly person wanting a ‘doctor-assisted suicide’ would need to be interviewed by two doctors (one a consultant geriatrician), appoint an official legal witness, and then be subject to a two-month cooling-off period. The final act of suicide would need to be committed in the presence of a doctor, rather than an ‘unqualified relative or friend as (according to Dr Irwin) there is a great danger that mistakes will occur’. Finally, the death would require detailed reporting to a central government office.
Bureaucracy such as this sits badly with many elderly folk, who think it’s no one else’s business when and how they die. With first-hand experience of a voluntary euthanasia law, I saw the way legislation made my terminally ill patients jump through hoops. Law reform strategies that advocate safeguards to the ‘nth’ degree may find appeal with politicians trying to appease their opponents, but they are inherently flawed.
Another p
rominent UK activist to attack Exit workshops is Debbie Purdy. Debbie, aged fifty, suffers from multiple sclerosis and is best known as the English woman who has booked herself into Dignitas. She went to the English High Court in 2008 to ensure that should her husband accompany her to Zurich for her assisted suicide, he would not be prosecuted on his return to the UK. She won this important case, a result that was instrumental in the decision in 2009 for the Director of Public Prosecution, Kier Starmer, to issue guidelines on the likelihood of prosecution in future assisted suicide cases.
Debbie has spoken at length about the importance of control. In a 2012 interview in The Financial Times, she said, ‘Dignity is about being in control. The thing is, you’ve got to understand the stress. You feel unable to get up in the morning if you have no autonomy.’6 Given that Exit workshops are all about restoring an individual’s autonomy by ensuring that people have control, her repeated attacks on Exit and myself seem misplaced. To Debbie, Exit’s workshops are ‘dangerous’.7 Indeed, she has said: ‘If someone decides their life is unbearable and they want to die, they ought to be able to find out how to do it, but they also must be told why it might not be right for them’. She went on, ‘It is important that proper safeguarded discussions are had with medical professionals and people who can offer alternatives—and that isn’t something that is going to happen at these (Exit) lectures.’8
I have found myself speaking in opposition to Debbie in debates and interviews in the UK and as far away as Hong Kong, despite the fact that we seem to share many of the same ideas. To date, she has declined repeated invitations to come along to a workshop, and hear the arguments and my approach for herself.
In the US, although the same divisions within the assisted suicide movement exist, there has been a much greater level of acceptance of Exit DIY strategies. Indeed it was on one of my earlier visits to North America in 1998 when I took part in a landmark meeting in Victoria on Vancouver Island with two other activists: John Hofsess and Rob Neals from Oregon. At that meeting a decision was made to set up Nu-Tech, a group dedicated to researching and developing technologies that would provide individuals with means to end their lives unassisted—self-deliverance. We each brought our specific fields of interest to that meeting; John, with his enthusiasm for a device he called the ‘De-breather’, which would deliver a peaceful death from hypoxia, and Rob, with his interest in the use of inert gases such as helium to achieve the same goal. My interest was (and still is) in the development of a ‘peaceful pill’, something that can be taken easily and lead to an inevitable and peaceful death. Indeed I first spoke on this concept, coining the phrase ‘peaceful pill’, when I addressed the 1998 World Federation of Right to Die Societies conference in Zurich.
Nu-Tech grew quickly, especially when it was joined, and for some time largely funded, by Derek Humphry, the long-term activist who had published the important self-help book Final Exit. My subsequent visits to the US and Canada were often made to coincide with Nu-Tech gatherings, and in the early stages of the group, valuable information was shared. In recent years, the group has faltered, coat-tailing on the biannual World Federation of Right to Die conferences, and becoming little more than a gathering where anecdotes are shared, rather than research presented.
With its large ageing population and strong right-to-die movement, North America remains important to Exit. This became very clear in September 2006 when the Peaceful Pill Handbook was launched at the Toronto World Federation conference. With a write-up in The New York Times, the handbook made Amazon’s top 100 bestselling list. This was followed two years later with the online handbook, and strong North American sales have continued ever since. This reflects, I believe, the considerable interest Americans have in the published sections about how to get Nembutal along the US–Mexican border. This was new information, unavailable in books like Final Exit, and it served a need. As an online book, we upgrade the section on Mexico every time new information comes in. At every revision, there is a surge in popularity.
Exit workshops were launched in America to satisfy the demand for information ignited by the Peaceful Pill Handbook. In 2009 the first workshop series ran with great success in Los Angeles, Washington State and San Francisco. But a follow-up trip to launch in Florida and New York never happened. I’m not sure what I did wrong, or whether it could have been averted, but the decision in 2010 to refuse my application for a US visa forced the cancellation of the proposed tour and caused immense difficulty.
By 2012 things were back on track, and with a US tourist visa I was able to attend San Diego Beer Week, although the Sydney consulate made me undertake a verbal assurance that no meetings would be held. The beer was great, and I held to my promise not to hold any meetings. But being that close to the Mexican border meant it was easy to walk over to Tijuana and carry out some Nembutal fieldwork, which was then published in the December 2012 handbook update. While America remains Exit’s largest audience, the question on how best to run a workshop tour there remains unanswered.
* * *
As is frequently the case in the non-profit sector, when there is ideology and the charity dollar is at stake, divisions and hostilities are often not far away. In Australia, this was particularly evident at the time of the death of property developer and former Lord Mayor of Brisbane Clem Jones, in 2007. After Clem died, his will stated he was leaving a cool five million to the voluntary euthanasia movement. Jones’ will stated:
I instruct my Executors to provide Five Million Dollars ($5 000 000) to use in whatever way they see fit to help those who are fighting to enable those who have suffered as I have described (and most of us have experienced), who choose to end their lives, to do so and to make it lawful and to provide within our laws, the ways and means for this to happen within the law.
Back in 2003, I had tried hard to amalgamate Australia’s seven state-based voluntary euthanasia societies. While it made good political sense to have one united voice, a new national group would have meant seven little kings and queens giving up their respective feifdoms, this was never going to happen, and the group was never formed. Instead, Exit International established its own national chapter, or branch, network and has grown to be the only national voluntary euthanasia member organisation in Australia.
No sooner had Clem’s will been made public than I started receiving media calls asking how it felt to be the recipient of such largesse. I was careful to say that, while it was great for the movement, I had no knowledge of how Exit would fare until I talked to lawyers. Herein lay the next shock. On talking to a few equity silks who pored over the structure of the Jones will, it was clear that neither Exit, nor any other group, was a beneficiary. The handful of trustees had sole discretion as to who would get the money and for what.
At this point, Marshall Perron appeared back on the scene; even though he was long retired to the Sunshine Coast hinterland, he emailed, asking if I would allow him to represent Exit to the Clem Jones trustees. I was flabbergasted. Perron had all but dropped out of the voluntary euthanasia movement since his retirement from politics in 1996. This had always surprised me, given the passion with which he had pushed his world-changing legislation through the Northern Territory parliament. But, I reasoned, he felt he had done enough. Even when he failed to turn up in Canberra to watch the debate that would finally bury his ROTI Act, I wasn’t that surprised. But here he was now, fifteen years later, offering to act as an agent on our behalf, to ensure that Exit got a slice of the Clem Jones pie. I declined the offer, saying we would present our own case, but I felt uneasy, and knew something was afoot. It soon became clear. Like some giant magnet, the Clem Jones money pulled together the state voluntary euthanasia societies, something I had never been able to do. Sensing a cash cow, they all fell into line, eliciting the services of Marshall Perron and agreeing to employ a little-known lobbyist, Neal Francis, on a $100 000-plus annual salary to form a so-called new ‘national peak body’.
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bsp; Three years later, this group ‘YourLastRight’, had little to show for itself, and its lack of progress had not gone unnoticed. In 2012, the West Australian Voluntary Euthanasia Society resigned from the group in disgust, amid allegations of financial impropriety.9 Dying with Dignity NSW also voiced its concern, and when long-term president of the Queensland society John Todd was forced to resign, the questions really started to flow. In the August 2012 editorial in our newsletter Deliverance, I joined those daring to ask what had become of Clem Jones’ ‘missing millions’,10 and immediately received a letter from the group’s CEO and chairman, Neal Francis, threatening legal action for defamation. While I mulled over whether or not I had anything to apologise for, the disintegration of YourLastRight began.
In September 2012, the online news service Crikey.com published an account of the events leading to the abortive defamation action against myself and Exit.11 With this publicity the executors of the estate became decidedly nervous and froze further funding to YourLastRight. Francis would resign from his position as president of Dying with Dignity Victoria ten days after the defamation threat arrived in my inbox. While Francis cited ‘personal reasons’ for the resignation, Rodney Syme would later state in an email to me that the real reason was that the defamation action ‘did not have the endorsement of his Committee’, all of whom were listed as co-litigants on notice of defamation. On 11 December 2012, Francis resigned from his remaining positions as chairman and CEO of YourLastRight and finally the World Federation of Right to Die Societies. While the group (now minus the support of several key players) may be able to survive in some form, the question of how the Clem Jones millions are to be spent remains unanswered, and a matter of concern to all Australian supporters of voluntary euthanasia.
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