A common thread linking most of the significant advances in human rights over the past 100 years is that most of mankind’s steps forward during this period were initially debated and resisted when they first saw the light of day.
For example, the American Civil Rights Movement, aimed at outlawing racial discrimination against African Americans, eventually achieved the passage of the Civil Rights Act of 1964 banning discrimination based on race, color or religion, but only after being heavily resisted by mainstream society.
However as with most innovations in Western society, whether civil, cultural or political, eventually resistance turns into discussion, discussion becomes broad acceptance, and finally acceptance results in institutionalized legislation. But whereas few of use were around to witness Rosa Park’s legendary act of defiance that bolstered the Civil Rights Movement, everybody has the power to weight in on, and contribute towards, the most hotly debated human rights issue of modern day – the debate over voluntary euthanasia law reform.
Euthanasia refers to the practice of ending a life in a painless manner, with the precise definition in the United Kingdom being “a deliberate intervention undertaken with the express intention of ending a life, to relieve intractable suffering”. Acts of euthanasia conducted with consent are termed voluntary euthanasia and can be conducted passively or actively. Passive euthanasia entails the withholding of common treatments, such as antibiotics, necessary for the continuance of life, whereas active euthanasia entails the use of lethal substances. Of the two methods, active euthanasia is the most controversial, inviting the most heated debate.
To perform active voluntary euthanasia an individual may choose to use a euthanasia machine on him or herself. And one of the first inventors of such machines is Dr Philip Nitschke, the worlds leading voluntary euthanasia advocate and the first doctor in the world to administer legal, voluntary euthanasia on a terminally ill person.
Dr Philip Nitschke invented a euthanasia device named the “Deliverance Machine” following his two year battle to have The Rights of the Terminally Ill Act passed. A controversial law, the ROTI Act effectively legalised euthanasia when it was passed by Australia’s Northern Territory in 1995. Entering into law on July 1, 1996, the Act allowed terminally ill patients to commit medically assisted suicide, either by the direct involvement of a physician or by procurement of drugs.
The passage of the bill — one of the first of its kind in the world — provoked a furore in Australia, and indeed in much of the rest of the world. The Act polarised the populace, receiving both widespread support from “death with dignity” and right to die groups who saw it as model to be followed elsewhere, and widespread condemnation from euthanasia opponents, such as right to life groups, who sought to overturn it.
However before the Act was nullified in 1997 by the federal Parliament it was used by four terminally-ill Australians to end their lives with a lethal dose of drugs delivered by the “Deliverance Machine”. Consisting of a notebook computer and software titled “Deliverance”, the machine asked the patient a series of questions and then automatically administered a lethal injection of barbiturates if the patient correctly answered “yes” to a series of questions on the lap-top screen.
However qualifying to commit medically assisted suicide under the ROTI Act involved a lengthy application process, designed to ensure that patients were both mentally competent to make the decision and in fact terminally ill. Under the Act a patient had to be over 18 and be mentally and physically competent to request his or her own death. Additionally, the request had to be supported by three doctors, including a specialist who confirmed that the patient was terminally ill and a psychiatrist who certified that the patient was not suffering from treatable depression. Then, once the paperwork was complete, a nine day cooling-off period was required before the death could proceed.
In July of ’96 the first person who wanted to use the law arrived in Darwin, a tax driver from Broken Hill named Max Bell. Dr Nitschke recalls “He arrived in Darwin very, very ill. I got him into Darwin Hospital but I couldn’t find another doctor who was prepared to come and see him for the purposes of signing his papers for using the legislation.
After three weeks of trying we ended up having to give up and poor Max Bell signed himself out of hospital, got back into his taxi which he could barley drive as he could hardly walk, and managed quite heroically to drive himself back to Broken Hill. He then died back there in hospital a couple of weeks later, after having to camp out in his empty house which hadn’t been sold but everything had been taken out as he wasn’t planning to return. So it wasn’t a good start.”
This failure to locate any medical professionals willing to support Max’s request to end his life led to national television show Four Corners running a story about the incident. “One thing that had happen after the Max Bell incident which turned out to be quite pivotal was the telling of his story of his arrival in Darwin and it included some interviews with him” said Dr Nitschke. “One of the surgeons who had refused to see Max in hospital rang me after he’d seen it and an image of Max. He said whilst it was one thing to reject him when he hadn’t seen him, after seeing his story and the imagery, if this ever happens again contact me. So effectively that was our first breakthrough.”
Days later the person who would eventually be the first to die under the provisions of the Act arrived. He was 66yr old carpenter Bob Dent, an Australian prostate cancer patient who had been suffering from prostate cancer for five years in what he described as “a rollercoaster of pain”.
Dr Nitschke recalls “even with the surgeons support we still had immense difficulty getting the other two signatures. Finally we managed to get the signatures in place and so I called Bob and said, well congratulations Bob you’ve qualified, you are deemed to be eligible to use the law. Now it’s a matter of you deciding if you want to go ahead and when. Bob just said yes he did want to go ahead as fast as he could, so he set a date for the following Sunday afternoon and said come around for lunch and I’ll die after that.”
However Bob choosing to die the following Sunday presented Dr Nitschke with a unique challenge, that of getting the “Deliverance Machine” finished in time to deliver the drugs so he wasn’t forced to give him a lethal injection personally.
Dr Nitschke recalls “The machine was causing a few technical problems; I was working flat out on that trying to get the interface issue, the part that presents the questions, sorted. I did not want to go and give that injection, even though of course, I wasn’t trying to argue that the fact that the machine delivered it meant that I wasn’t in some way responsible. I was clearly responsible for the loading, the positioning and the inserting of the needle and everything, but in any event I didn’t want to have to sit alongside Bob and do it myself.”
“It was important to get the machine working as I really had problems with this feeling of being in some way some form of executioner turning up at the doorstep knowing full well a person’s going to die in the next hour or so. And the fact that it’s someone you’ve come to know is very hard” he said.
“The expectation is that you’re going to make this happen, you can’t just show up and say oh hell I forgot something, can we do it tomorrow. It had to work and there was an immense expectation and responsibility that was causing me a considerable amount of concern. The fact was something might go wrong so I was trying to have back up systems in place because I knew I was going to be by myself. So the machine was very helpful.”
“The other issue, which was a secondary thing, was the machine enabled me to get out of the immediate vicinity of Bob so that he had personal space that allowed other people in there. It’s one thing having a doctor sitting there delivering a lethal injection – who ought to be in there are the people that he wants there, that is the people that are closest to him, not some drug deliverer. So the machine allowed that. I got to be on the other side of the room, as I had to be present as the Territory legislation said I had to be in the room, but I didn’t have to be sitting there. Judy, his wife was able to come in and be right close to him, in fact, was able to hold him as he pressed the button on the machine.”
“Being there without any real test of the machine presented huge amounts of anxiety to me, I noticed those anxious symptoms from the fact I had about an hour’s sleep for the past three nights leading up to this. I was working all the time to make sure everything worked properly. So I sat down on that Sunday with some trepidation and to this day I have a pretty clear recollection of that Sunday as it’s one of those days which I am unlikely to forget.”
“I set out there to attend the midday luncheon invite as suggested and I just remember arriving there, sitting at the table, getting my sandwich and not being able to eat it and not feeling like eating anything. I noticed all sorts of things that I became quite embarrassed about; I looked down and saw that my shirt, one of those shirts that show sweat, was just soaked. And though it was sort of a warm day, it wasn’t hot and I was embarrassed about that and I was wondering why I couldn’t eat my sandwich because my mouth was so dry.
So I was trying to force myself to eat my sandwich, but my dry mouth and the extreme sweating were all parts of my hyper-anxious situation. And then there were problems with the conversation, I remember I couldn’t think of anything to say. There was a sort of almost artificial feeling that this was just a normal lunch, people were almost trying to be natural but there’s nothing natural about this lunch, it was a last lunch and I didn’t know what to say. You’re about to say nice day and then you start to think that most things you say have got some future dimension to them, so you think I better not say that as it’s a bit tasteless.
So you edit everything in your own mind before you say it and what you’re left with is almost nothing. Bob’s wife Judy and I were pretty upset, but Bob seemed to be handling it better than everyone else. He did his best to make everyone feel happy, I remember him saying ‘this is the best thing, I’ve been so lucky to be in this position’, that’s how he described it. He was in the right place at the right time, lucky to be lucky enough to get a lethal injection. He said he felt fortunate that this law had come in and was in place and operational by the time his disease worsened to the point where he got to the stage of wanting to die.
So he was doing everything to make me feel happier, which wasn’t terribly successful, and when the clock finally ticked over to 2:00 and Bob had finished his meal, he said I think we should go now and get started. So he moved into another room, it was sort of an outside veranda area, and he lay down on a sofa couch and I brought the machine in.
I managed much to my amazement to get his needle in first try so I taped that down and tested it and everything was fine. I made sure the machine was all connected up then I loaded it with the drugs, placed the machine beside him with the software running, and presented the laptop to him showing the first question of the three.
The machine was designed for a lucid person who could read and respond, and if Bob pressed the wrong button or pressed a button by mistake, in fact, any button pressed other than the right one closed the machine down. So Bob looked at the three questions and basically pressed the yes button as fast as he could and the last one said the dose would start in 15 seconds, so he pressed the button and pushed the machine off to the side.
Bob held Judy as I watched from over the other side of the room. I just remember looking up at the ceiling fan cycling around waiting for the 15 seconds, almost with my eyes closed. I just sat there waiting for what seemed an interminable period, and when the machine finally started ticking I was immensely relieved as it was a good feeling to know the machine was working. I looked up when I heard the ticking but it was too far away to see, normally you’d see the drugs racing down the line and I guess Bob would have seen that if he’d looked.
I couldn’t see that from where I was, but Bob just went on talking to his wife, he was holding her and then a few seconds later he just went quiet and lapsed into unconsciousness and she just sat there holding him. The machine ticked away for a while and then it stopped when it ran out of drugs and everything went quiet, and we just sat there for about half an hour, no-one moving. Judy laid Bob back down on the couch and it was very clear when I went over there that he had died.
The original combination of drugs we used was really modelled on some of the drugs used by the American authorities in lethal injections. We had modified that a bit, but it was basically the standard combination of a barbiturate to put you to sleep, a muscle relaxant to stop you breathing and then a drug called potassium to stop your heart. This combination was eventually modified as in the end we just ended up using a single drug protocol because there was no need to add the second two drugs. Just a single large intravenously administered dose of the barbiturate Nembutal.
After this, Dr Nitschke remembers feeling immensely relieved. “I remember walking out into the sunlight and this huge weight had been shifted off my shoulders. I am very much of the opinion that all of the difficulties I was going through were associated with anxiety, associated with failure and problems, so once it had worked all that anxiety had lifted. I felt quite good, I felt good that we had passed such a civilising piece of legislation, and that it had been possible to see it work to provide this person with something he wanted and needed.
Bob had asked for help, so providing him with a very peaceful death where basically one minute he’s sitting talking clearly to his wife, the next he goes to sleep in her arms and dies is what he wanted. That was not going to happen if he was going to die from his prostate cancer. He got for the first time in the world what many have wanted. I was aware at the time of this feeling that this had been a world first and I’d been part of it, so I felt pleased about that and I felt that this was a good thing to be involved in.”
When you speak with Dr Nitschke you find out pretty quickly that he believes that just as we have the right to take medicines and consult physicians in order to prolong and preserve our lives, so do we have the innate human right to control the means of our passing. His belief that Australia’s “draconian medical system” actually prolongs the suffering of terminally ill people unnecessarily and prevents elderly and terminally ill Australians from being in control of their end of life solutions.
When the ROTI Act was overturned in 1997 Dr Nitschke decided to found Exit International; a world-leading voluntary euthanasia and end-of-life choices information, education and advocacy organisation. Today, with his full time staff of five and an active network of more than 50 volunteers around the world, Dr Nitschke’s non-profit company works with partners in the US and the UK to provide information on end-of-life choices to elderly people who he believes “have the right to make informed decisions about when and how they may die”.
Dr Nitschke is quick to point out that the average age of Exit members is 75 years, with most of these members being well, yet elderly, and only a minority of members being seriously or terminally ill. He also believes that suicide machines and information can actually prolong the lives of the terminally ill by making them feel more in control of their future.
“The idea of giving people access to a means of feeling that they’re back in control of this issue is actually a way of prolonging life. It may seem paradoxical, but what we find is when people feel that they’re back in control, they’re less likely to do desperate things in desperate ways and people are always doing desperate things in desperate ways and ending their lives” he said.
He also argues that Exit Internationals services are necessary because the subtleties of end of life law mean that people have very little options with Australia’s current legal framework. “It’s the same now as it was then” he says, “you can suicide as that’s not a crime but you certainly can’t get help. That’s always struck me as being bizarre as there’s no other example in law where suicide’s not a crime but to assist in a non-crime is a crime. What this does is leads people down this path where in one hand the state seems to be saying yeah, go off and end your life if you want to, we don’t care, but you can’t have any information.
So it’s about a quest for information so that people know what they’re doing and so they don’t get caught up in one of these nightmares where they use the wrong drugs in the wrong amount, or the wrong techniques and the wrong method, and end up causing much more harm to themselves than they would have done if they’d had access to good information.
He also believes that this demand for information isn’t going to go away. “I think it’s only going to get more pronounced with this huge number of baby boomers coming into their twilight years, these are people who have the feeling that modern medicine in a sense has taken away control. But I don’t think whether we get legislation or not is the cutting edge issue, I think the issue is whether every rational adult should have access to this choice, and whether a person should have the option of being able to end their lives at the time of their choosing, not just when and if some panel deems it to be suitable” he said.
However Dr Nitschke is hopeful that Australia’s laws will be reinstated. “I think the laws are definitely going to be back as there’s been talk in the time since Australia’s law came and went. Today there are several countries, including four states in America, where euthanasia is legal – like Europe, Luxembourg, Belgium, Holland and of course Switzerland – and hopefully in the next few years we’ll catch up to the rest of the world on this issue.”