NINETEEN
Looking ahead
The future belongs to those who prepare for it today.
Malcom X
I’m occasionally asked what I’ve done about succession planning at Exit. As things stand, I realise, I can’t exactly delegate my central function. This is something I have agonised over, as the issue comes up from time to time with Exit members. I realise many groups share this conundrum but I guess not all are as highly individualised as Exit has become. I’ve asked Fiona, and she said she would think about it. A medical background might help, but it’s certainly not essential. Initially I thought a young doctor who was looking for a challenging life project—rather than settling down into the security of a regular medical practice—might come forward, but as yet, no one has. And who can blame them? This can be thankless work. I have stayed at it, not only because it is something I believe in deeply, but because I’ve been able to successfully blend my personal and work life. I’m not sure how many others would find themselves in this lucky position.
I don’t plan to leave the organisation any time soon, and, like many of my generation, I like to think I’m going to live forever. I’m a believer in the benefits of aerobic exercise and fitness, although this may stem more from my hypochondria than a search for longevity. My daily exercise routine is something I quite literally could not live without.
My father had a heart attack at sixty-five, then lived another ten years with his damaged health before succumbing to progressive heart failure. I don’t want that. When I was a postgraduate student at Flinders University, and interested in exercise, I came across the Harvard step test and liked the idea of being able to quantify things like fitness. The step test was devised as a cheap and easy way to screen young men entering the military in World War II. It involves stepping up and back down 50 centimetres 150 times in five minutes, followed by a five-minute recovery phase with sequential heart rate readings and use of the formula. A count of 100 shows an excellent level of cardiac fitness. It’s not an easy exercise; at university I persuaded every one I could to try the test, smugly looking on as many failed to complete it. I’ve done it intermittently for the past fifty years and, these days watch with some concern as the index slowly declines.
Another reason for not being too concerned about an Exit succession plan relates to my changing attitude to the voluntary euthanasia issue and likely developments. When I first became involved, I thought that the Northern Territory legislation would start an inevitable process that would put an end to the bigoted and inhumane attitudes that opposed a person’s right to a peaceful death. The Kevin Andrews Act scotched those hopes. Over time, I’ve parted company, ideologically, with those who still see changes in legislation as the single ultimate goal.
Legislation is, by its nature, limiting, and most models that now exist only address the needs of those who are extremely (usually terminally) ill. As I often quip when referring back to the Northern Territory model, you just about had to be dead to qualify! It was as though the state was saying, ‘Okay, you’ve only got a short time left, so, we’ve decided to let you go.’ While some newer models, such as the New Zealand End of Life Choices Bill, proposed by MP Maryan Street, does recognise chronic suffering rather than terminal illness, and does have provision for written advance directives if a person should lose the ability to communicate, even this most progressive model is still anchored in the concept of the state granting authority, rather that the patient (or even a well person) having this choice as a basic right. There is a growing number of people who want the choice of controlling the timing and manner of their death not only because they are terminally ill, but for all kinds of other (often non-medical) reasons. A quadriplegic who has had enough, the long-term partner who doesn’t want to live on after the death of their loved one, the ninety year old (like my mother) who sees little point in living on after all her friends have gone. These people will never have their need served by the passage of voluntary euthanasia legislation. To my mind, their best hope is with the development of better and more accessible means of peacefully ending life. Exit International increasingly reflects this view.
When asked to look ahead, say, ten years, I’m not particularly optimistic about possible law reform, even though there is a certain inevitability about it. In Australia, Tasmania and South Australia remain the states ‘most likely’ to legalise some form of voluntary euthanasia. However, the current swing to the right in most states, along with in the Federal Parliament, doesn’t augur well. In many ways, the issue is much hotter in the US, where the Citizen Initiated Referendum (ballot) process allows the public at the state level to pass laws with the same force and effect as parliamentary legislation.1 In the UK, too, the government has been forced to confront the legislative environment, given the sheer number of locals crossing the Chanel to make use of the Dignitas service in Zurich.
In the UK in 2010, the Department of Public Prosecutions, prompted by the Debbie Purdy case, relaxed the guidelines on who is and is not likely to be prosecuted due to assisting a suicide.2 While hardly an instance of law reform, it is an important first step. Others are using the UK’s courts to mount legal challenges. Another important recent case, one in which I was involved as an expert witness, made use of the defence of ‘necessity’ to the crime of murder. Following a stroke in 2005, Tony Nicklinson developed ‘locked in’ syndrome.3 This meant that while his body had no movement, his mind was unaffected. Tony could blink, but little else, and communication was a nightmare. He wanted to die; the problem was how. Even in Switzerland, you need to be able to drink the Nembutal yourself. Tony’s legal case revolved around his effective discrimination as a disabled person; his ‘illness’ was denying him his right to suicide.
My involvement with Tony concerned modifications to the Deliverance Machine. With Ted Huber, a friend from Flinders University days, I worked on a wireless interface that would allow Tony to self-administer his own lethal drugs. Of course, Tony’s family GP would have needed to prescribe the drugs. Jane and Tony’s two adult daughters, Lauren and Beth, would have loaded the drugs into the machine and connected it to his stomach peg but, literally with the blink of an eye, Tony could have had the peaceful death he wanted. I became involved when Tony’s QC, Paul Bowen, made contact to see if I would be interested in joining the team. Under current UK law, a murder charge was a distinct possibility if anyone were to help him get his wish. A High Court case was an attempt to ensure that Tony got his peaceful death, without any legal carnage left behind. Sadly, after losing the initial court hearing, Tony died of pneumonia a short time later.4 A case like this takes me full circle and once again stresses to the potential of technology and its important role in the ongoing euthanasia debate. Technology that can get around legal hurdles, technology that makes things possible, makes things happen.
On this note, in recent years my work has changed direction. While I am still committed to holding workshops, the debate has moved well beyond ‘Voluntary Euthanasia 101’. With our members’ increased level of know-how, new challenges are emerging and our the elderly supporters are actively racing ahead, getting their practical options sorted.
Several years ago, I happened upon China as a source of laboratory-grade sodium pentobarbital. According to The New York Times, chemical companies in China, unlike drug companies, go largely unregulated, and we’d discovered a source of powdered Nembutal that is relatively easy to access.
Once this information was verified, we published the news in The Peaceful Pill eHandbook. While we were not encouraging our readers to import the drug, we noted that it was now readily available. Not unexpectedly, many took the plunge and broke the law, often for the first time in their lives. They did this to ensure that they had choice and independence, safely stored, a comfort to them as they aged.
The availability of this new form of the drug, however, has brought problems of its own. I’m constantly asked, ‘How do I know tha
t this packet of white powder that arrived in the mail is the real stuff?’ ‘How do I know if it’s pure?’ ‘How do I know it will “do the job” if I ever take it?’ These are questions that only science and technology can solve.
To take choice to the next level, I have embarked on a mobile drug-testing service, and the development of a quantitative home test kit to enable people to test the purity of the drug. Exit now offers the equipment required so that elderly members who have imported powder they believe to be Nembutal can come to the laboratory and do their own purity testing, and a home kit for a quick, but less accurate, measurement in the privacy of their home. The appeal of a long shelf life is clear. Get the drug, test it, store it correctly and get on with living; sort out this issue once and for all and put your own safety net in place. In the broadest terms, this is the future I see, rather than an ongoing battle for legislative reform, and it is for this reason that succession planning at Exit is not that important to me. My critics though, are quick to ask, exactly who should be able to get this precious powder? The depressed teens of the world? Of course not, although, over time, my position has broadened.
I now believe the ideal situation would be for Nembutal to be available to every adult of sound mind over the age of fifty who seeks it. Naturally, there would be grey areas—for example, the definition of a sound mind, and what about the cut off age? But these things could be worked through. Like all big ethical issues, voluntary euthanasia raises some complicated questions that, while not unanswerable, deserve serious consideration. A concern I have long had is in regard to prisoners who have life sentences, as for some people, life in prison is a form of torture. Although I’m totally opposed to capital punishment, the question is, should prisoners with no prospect of ever being released be given the option of voluntary euthanasia? I think the answer is clear: if the state is going to engage in this form of torture, it should at least be prepared to offer those incarcerated a peaceful death. Anything less is barbaric.
In 2009, I was approached by the Public Defenders Office in Cleveland, Ohio, to help challenge the legal decision to execute murderer Kenneth Biros. In November of that year, Ohio became the first state to adopt the one-drug protocol for lethal injections. The usual practice had been to administer the barbiturate thiopentone, which leads to loss of consciousness, and then to follow up with a curare-like drug and finally potassium to stop the condemned prisoner’s heart. The proposed ‘single drug protocol’ was an attempt to avoid the grim consequence of administering too much of the paralysing drug curare, after insufficient thiopentone. Another concern was that thiopentone, or Pentothal as it is commonly known, was becoming very difficult to source and attention turned to possibly using a single intravenous administration of sodium pentobarbital, or Nembutal. As one of the few people to have ever had experience of intravenously using this drug to end life, the question I was asked was whether there was any argument I could think of that would preclude its use in executions. I worked with the office over a period of months, but it was difficult to see how we could mount a case against the use of Nembutal in executions, while supporting its use as the best voluntary euthanasia agent. Ken Biros died by lethal injection on 8 December that year. His death may have been efficient, although hardly the type of elective peaceful end that Exit seeks. His death, as with all deaths from capital punishment, was an obscenity.
I’m sometimes asked about my own death. Well, I face the same dilemmas as everyone else. I dread the thought of leaving behind those I love. I also don’t want to die in some hospital, clouded with drugs, tethered to tubes and monitors. If I’m lucky enough, it’ll be a bottle of Nembutal in the Gibson Desert, leaving what’s left of my body to the western crows. I’ve spoken about this with Fiona, who has promised to help make it happen, if needs be.
And I’m occasionally asked, ‘What about a political career?’ Well, what about it? While there is a handful of politicians I admire, parliament is probably not the best place for me. I would have trouble functioning in an institution that sees every issue of importance as a two-sided battle between warring factions. I’d also have trouble finding any political party that would want me as a member, or one in which I’d want to be a member, although I have recently become an enthusiastic supporter of the newly formed Voluntary Euthanasia Party, initiated by Corey McCann. As I’ve realised through my several election campaigns standing as an independent in the seat of Menzies and elsewhere, this can be a hard road, and getting any message out during an election is difficult. But with a party behind you, and in particular the Voluntary Euthanasia Party, well, maybe that’s got possibilities. Personally, though, I think it may be better for me to be working as an activist in the community, if not on voluntary euthanasia, then on other issues that concern me, such the size of the world’s population, the exploitation of natural resources and the associated deterioration of the planet and damage to our precious plant and animal life.
And it’s just as well I have other interests and concerns. At the time of writing, there is a major threat looming for my work as a doctor and as voluntary euthanasia activist, in that that AHPRA is once again trying to take away my medical registration. At the end of 2012 there were two concurrent investigations into my fitness to practise medicine. The first inquiry stemmed from my idea of using the Therapeutic Goods Administration’s Special Access Scheme (SAS) to possibly lawfully import Nembutal to be used as a sleep agent.
‘Wendy’ was a terminally ill woman from Victor Harbor in South Australia, who made contact with Exit on 31 May 2011. Two weeks earlier, she had been diagnosed with Motor Neurone Disease (MND). Determined not to end up paralysed and at risk of choking on her own saliva, Wendy joined Exit, bought The Peaceful Pill eHandbook and requested a clinic visit with me. A few months earlier, in March 2011, Australian Customs issued an information sheet titled Importing Barbiturates: Pentobarbital/Nembutal that stressed the illegality of such importation, except in the very special circumstances covered under the Special Access Scheme of Australia’s Therapeutic Goods Administration (TGA). ‘Special access’ enables medical professionals to apply for the lawful importation into Australia of unapproved drugs for prescription to terminally ill people. The Customs article gave me an idea. Instead of breaking the law by illegally importing the drug, Wendy and a number of other terminally ill patients I had could apply to make use of the SAS. Wendy certainly fulfilled the necessary criteria of being a ‘Category A’ patient. Under Australia’s Medical Device Regulations, Category A is defined as ‘persons who are seriously ill with a condition from which death is reasonably likely to occur within a matter of months …’
At the time, Wendy had been unable to get a satisfactory night’s sleep and had been unsuccessfully self-medicating, using her partner’s valium. Subsequent prescriptions of other sleeping medications, including Phenobarbital, had all failed her. This is perhaps not surprising, as MND is notorious for interrupting its sufferers’ sleep. While I planned to warn Wendy not to misuse the drug, ultimately that would have been up to her, as it is with any drug a doctor prescribes. However, things never got that far. As soon as I submitted the initial application (stage 1) of the approval process, AHPRA received a formal complaint from the TGA. The TGA based its complaint on media reports suggesting that the application was made solely to facilitate the patient’s suicide, and accused me of acting contrary to ‘good medical practice’.
At this point, Wendy knew that the special access scheme of the TGA would not be possible for her. Like so many in her situation, she didn’t have time on her side. As she wrote in her suicide note:
Motor Neurone Disease is an awful disease. It deprives a person of their dignity and independence. It also provides an awful death when swallowing becomes impossible and one is trapped in a paralysis which has no end.
My decision to end my suffering rather than waiting for the disease to finally take hold of me is a long and considered one.
On 11 December 2011, Wendy drank the Nembutal she had obtained illegally via the internet. She was sixty-one years old.
The TGA complaint started a long process of investigation by AHPRA into my ‘fitness to practise medicine’. Years later, I still have no idea what the outcome of this lengthy enquiry will be.
More insidious was the second investigation launched in August 2012, again to establish whether I was ‘fit and proper’ enough to hold medical registration. The second enquiry started while the first was still running. That AHPRA was to initiate a new investigation was made known to The Australian newspaper long before I was even informed. When I complained to the regulator about this issue, they denied any complicity, claiming I should have ensured my mailing address was up to date. I still left wondering then how The Australian’s Dennis Shanahan could bill his article as an ‘exclusive’?5
The issue this time concerned my involvement in the distribution of Max Dog nitrogen cylinders. In recent years, my research focus into the use of gases to provide a peaceful death has shifted from the use of helium to the use of nitrogen gas. In terms of efficacy, any inert gas will work with an Exit bag; a significant and unique advantage of nitrogen though is that it cannot be detected at autopsy. For many elderly Exit members, what is ultimately written on one’s death certificate is important. They say they don’t want to be known in the family in years to come as ‘old Aunt Mabel who suicided’, especially if they were to take this step after some long battle with cancer. Nitrogen also has the added benefit that the Max Dog cylinders are refillable, the gauges are more precise and, if any leakage does occur over the years while the cylinder is in storage, the gas can simply be topped up.
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