Damned if I Do (20 page)

That was the end of the Outback trek. It was ­certainly a break from work and it provided us with some great moments. We still laugh about the fact that even though the Exit staff all noticed we were missing, none of them thought there was any point in contacting the police. We may just have needed that giant ‘HELP' sign after all.

EIGHTEEN

Day by day

We don't sit around talking about death and dying all the time.

Philip Nitschke, 2008

M
y days are busy, damn busy, and have been for years. But it was entrepreneur
Dick Smith, at the
Festival of Dangerous Ideas in Sydney, who made me take a step back. After our joint panel presentation, Dick asked me casually, ‘How do you make your living?' My standard response to this question goes something like, ‘
Oh, people who like what I do make donations; it's hand-to-mouth, but we get by.'

This is an automatic response developed over many years, the aim of which is to keep the conversation short. But, in truth, making a living as a
voluntary euthanasia activist is a hell of a lot harder than this makes it sound. The task is twofold. First, voluntary euthanasia must be kept on the public agenda; the principal way of doing this is via the media. Second, I have to pay the bills. When I gave up a full-time medical practice in the late 1990s I took a ­considerable pay cut. This didn't matter—I've never been driven by the dollar. But, these days, I have an organisation that needs funds to undertake its activities and I have a small staff who need to be paid. My waking hours are spent managing these two driving factors. I need constantly to devise new ways of ­encouraging the public to show their support by becoming members of Exit International, or by paying to come to a workshop, which is the fee-for-service side. Donations are a bonus that help keep Exit afloat financially and allow me to continue.

These financial needs of running an organisation are balanced every day against our political aims of promoting a law reform agenda and ensuring those who seek end-of-life options are well serviced. Most of the time, these two goals are compatible. For example, exposure in the media not only brings new members (and sells more books) but it ensures that voluntary euthanasia remains in the public's eye, and may even prompt a politician or two to change their position.

As I explained earlier, working with the
media is relentless, delicate and time consuming. Not only do we need Exit members, or other members of the public, to tell their ­stories and share their lives, often at a time of incredible stress and anxiety, but this also needs to fit in the media's interest in covering the issue. It does occasionally happen, when the needs of Exit and the media coincide, but it is a bit like the alignment of the planets. It's naïve to expect a newspaper to run a story on voluntary euthanasia every week and they're the first to remind you that they are not your gun for hire. The media will only cover a story on some aspect of voluntary euthanasia or interview a suffering person seeking help when it suits them, and there's usually nothing I can do to make them change their minds. Commonly, though, I spend my days talking to, cajoling and sometimes even fighting off journalists. Like them, I often feel as though I am only as good as my next story.

And then there are the subjects. Most people who are dying want their privacy, and don't want what's left of their lives talked about and publicised. Even if the family are committed voluntary euthanasia supporters and don't want the death of their loved one to be in vain, they don't ­necessarily want to be dragged into the spotlight. It is a very special person and a special family who will trust their cape and take the leap. This can be extremely frustrating, as I see opportunities for social and legislative change pass by, all because this or that person won't talk to the media. While I try to be sympathetic, I am also often very frustrated that a refusal to speak often means that the big picture remains unchallenged and unchanged. When a person gets their Nembutal and has their options settled they are often overjoyed, and keen to withdraw from the issue, but this doesn't help others. In the long run, change is needed. Every day I see people quietly using their drugs and leaving the planet. It is good that they have that choice, but I just wish they'd spoken out before they went; the activist in me can be hard-hearted at times.

Working with and trying to use the media this way may sound like prostitution and, yes, I have been accused more than once of being a media slut. But, as Fairfax journalist
Gay Alcorn once pointed out, my living and my organisation now depend on it; no longer can I rely on the sheltered medical workshop available to all Australian doctors. If voluntary euthanasia fades from the national agenda, there will be even less hope of change. And, if people don't support my work, Exit's bills will not get paid. Unlike others in the non-profit sector, we have no government grants to fall back on. Each dollar that comes our way is as much a product of ­strategic planning and hard work as it is a vote of confidence in who we are and what we stand for.

Taking a step back from media, we are always looking for an innovative strategy to highlight the issue. One recent opportunity that presented itself was the chance to run a
test case on voluntary euthanasia, in particular looking at the argument that the seriously ill are discriminated against by current law, because they have lost the ability to suicide. It is a rights issue, and we have been in talks with a leading law firm that is interested in running a test case on this issue. While they are offering their services pro bono, finding the right person and family to base it on, and then finding the exact legal hook to hang the whole project on, is a major challenge. If this gets off the ground, it will be the product of a huge amount of background work, but a positive declaration on a legal question such as this would have immense value and could well precipitate action.

On a week-to-week basis, my time is divided between being on the road and holding workshops and public meetings in Australia, Europe, North America and New Zealand, or the respite times between. When I'm not travelling,
I start the day with jogging, which I find is as good for my head as for my heart. This is a daily indulgence that I try never to sacrifice. Once back home and in the office, however, the best-planned day can develop a mind of its own as I troubleshoot from one thing to the next. On bad days, I find myself running in circles and having very little to show for it. On other days, visible leaps forward are made. The trick to survival is an ability to multi-task and to manage time. And, since our small core of five staff all work from home across three countries, it can be challenging. My long-time business manager in Queensland has long since learned to read my mind.

Quite often, Exit will have a number of important issues or projects on the go at any one time—we have to—and we must carefully ration the projects we embrace, ­prioritising them depending on their importance, cost and time needed to develop them. The limiting factor is usually money. When Exit's fortunes improve, with a bequest for example, the number of projects we undertake increases. Any one week could involve the scheduling of, and doing the mailing out for, workshops in the US, dealing with programs such as
60 Minutes
in Australia, ensuring the next shipment of Max Dog nitrogen is on its way to those who have ordered it, talking to and counselling terminally ill patients who call in and who would like a face-to-face visit, speaking at public debates and conferences (events that are as often overseas), preparing and publishing updates to our online
Peaceful Pill eHandbook
, which is still produced in the US and, related to this, updating the online
Peaceful Pill forums (which have more than three thousand active members worldwide), staying up until the early ­morning to join an Exit webinar in the UK, or research and experimental work in my laboratory and learning how to use Exit's newest piece of laboratory equipment. Time for reflection fits somewhere in between and there are rarely enough hours in the day. I can't describe how much I look forward to my quiet beer and the chance to relax each night.

But would I change this life? Not likely. Like others who are self-employed, I treasure being my own boss, deciding what issues to pursue, and having a work life that is so varied. While I have a board of directors at Exit, the day-to-day running of it is at my discretion. Of course the down side of this is that when our Exit members are unhappy, or feel that their needs have been ignored or overlooked, then the responsibility is mine, and with no one else to blame, I have to take their criticisms on board; it is a foolish person who does not listen to the complaints and advice of others. But, no, despite the frantic rate at which I often have to travel, I would not change this life.

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 that 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.