What if i called you a rebel with a cause?
‘That is a very flattering one and a nice one. They are not always that nice to me. You see, I have been involved in a couple of different issues (Aboriginal land rights, nuclear disarmament), but this end-of-life issue has become my most important topic. It is the one I am most involved in, the last 25 years. It has become my life, in fact. After my study in physics and the completion of my PhD degree, I decided not to work as a physicist. It was the time of anti-war, anti-Vietnam movements and my work could be used in developing weapons. So, I started to study medicine as a ‘mature student’. After that, I started to work as a junior doctor in the biggest hospital in the Northern Territories. At that time, 1995, the local government brought in a law called the Rights of the terminally Ill act, which legalised euthanasia. The people wanted it, but it was strongly opposed by both the church and the Australian Medical Association. These doctors said there would be no doctor who would do this, because someone who wants to end his life must be suffering from a psychiatric disorder needing treatment. I see this attitude as a typical example of medical paternalism where doctors think they know better what is good for you, even in matters of life and death. However, this law was overturned by another law, which passed through the federal Australian Parliament in 1997. I was upset. I had many older people coming to see me, wanting information and wanting choice and so I founded Exit International in that year. Now the organisation has grown to over 20.000 members. Our main activities are holding workshops and publishing information on methods of self-euthanasia. The most well-known publication is the Peaceful Pill Handbook, both paper based and digital, available in English, German, French, Italian, and – recently – Dutch.
Access to the (digital) peaceful pill handbook (EPPH) is restricted to people 50+ years of age. To me that looks like a rather arbitrary criterion. What if i am ‘only’ 49?
‘Of course, that is arbitrary. In a philosophical and legal way, we consider everyone over eighteen years an adult, given s/he has a minimum of ‘mental capacity’. The problem is that when a young person ends his/her life using information from ePPH, the public opinion will point the finger at us, stating that we are to blame. From a pragmatic point of view we use this restriction as our policy. Besides, the vast majority of Exit members are indeed 50+. However, if people younger than fifty want to have access, they can email us, explaining why they need access. We can and do make exceptions.’
Can suicide be rational?
‘Well, a few years back, a 45 years old, physically and mentally healthy man came along to an Exit workshop. He sat in the audience as I discussed the peaceful and reliable ways that one can end one’s life. He also had the Peaceful Pill eHandbook. I later learned that he went to Hong Kong and later took the drug and died. It was then revealed in the media that this man was facing investigation over the mysterious disappearance of not one but two wives. He was being investigated for their possible murder. If guilty, he would get a mandatory life sentence. When I heard this, I thought that this was a rational suicide. This person had decided that it was better to die than serve 20+ years in jail. However, the medical profession disagreed. They called me a danger to the Australian public, and suspended my medical license. (This was despite the fact that I had not used my license for around twenty years. My work with Exit is not medicine.) With my license suspended and my reputation being trashed, I appealed in the Northern Territory Supreme Court. My lawyers were excellent and we won the appeal. The Medical Board had illegally suspended my registration and I was immediately reinstated. However, the Medical Board then lodged another twelve complaints, one of which stated that if I wished to remain a doctor, I must remove my name as author of the Peaceful Pill Handbook. This ultimatum was totally unacceptable to me. I eventually burned my medical license and resigned in disgust. In Australia, at least, ‘rational suicide’ is incompatible with the medical profession’.
What do you think of the recent developments op coöperatie laatste wil (CLW) here in the Netherlands?
‘When I came to the Netherlands, of course I followed these developments closely. I do support CLW’s philosophy and innovative approach. There is a lot of interest by the public and I understand the membership of CLW is going over the roof. I spoke to Petra de Jong and Jos van Wijk (founders of CLW, ws) early last year about how we could work together. After discussions with my partner and others in the movement, we decided it was better to keep the publishing of the Handbook independent. This was well before the publicity of middel X. Like others, when middel X came along, I was very surprised because everyone who works in this area has historically had so much trouble finding trustworthy suppliers for the best end of life drug (eg. Nembutal). While this is the best end of life drug for sure, it is illegal. Sourcing on the internet is also against the law, despite the fact many elderly and sick people do this. So when middel X came along it was as if they had discovered the ‘holy grail’ of drugs. At least that is how they talked about it in the media. However, the problem is that CLW kept everything secret, so the people didn’t know what they are talking about. CLW claimed middel X provides a nice and easy death, but that is not reality. I know the substance and it is nasty stuff. This is not the holy grail, this is a cheap and difficult substitute. In this regard, through being secret about the identity of middel X and failing to provide the opportunity for peer scientific comment, CLW are peddling a false dream. I think you have to be honest to the public. I think what they are doing is unethical and profoundly unscientific. I know they say, that if we were honest, people would know and there will be suicides everywhere. But the reverse is also true. Middel X is not a peaceful death. If the general public knew this, there is also the possibility that they would not take the option. For the sake of disclosure and transparency, we felt we had to update the handbook to immediately inform our readers about the problems with middel X. We rank all methods we cover in the book according to seven key criteria, middel X included.’
But what about the philosophical concept behind CLW?
‘My philosophical point-of-view is that when an adult is of a sound mind, he should be able to give away his life. This automatically leads to the practical question ‘How do you know this person is of sound mind?’ I don’t want to send people to a psychiatrist to assess whether they have ‘mental capacity’. I find the whole notion that the mental capacity must be proven (based on the assumption that we lack capacity until proven otherwise) highly objectionable but it seems that is the world we live in. Given this, I am constantly thinking about ways of proving one is fit to make decisions about one’s death and this is where the idea of artificial intelligence fits in. What if algorithms are able to assess people? What if a person can demonstrate that they are of sound mind to a computer? This would be the perfect ‘safeguard’ for my Sarco1 machine. Do the online test, climb into Sarco and press the button (laughs). So, this is a problem I do not have a clear answer to yet. But, if you are an adult – even if you suffer from a psychiatric illness this does not mean you lack mental capacity. In my opinion you can still have the ability to make the rational decision to die. In this respect, I agree with CLW.’
Can you give an overview of the global situation with regard to (self)euthanasia?
‘As I see it, the issue is developing in so many places at the same time, but the process is similar. Countries are in different phases, so to say. I believe that if there is experience – like in The Netherlands, which is the most experienced country in the world – you see the laws being fine-tuned up to a point where there is no more progress possible within the legislative framework. At this point, the debate shifts to the next phase. For instance, the ‘completed life’ discussion we are having. I have not seen this concept being seriously discussed anywhere else in the world. There is a sort of natural history happening here. Countries first bring in the restrictive medical legislation, and then loosen those laws. When someone brings up the point of suffering from psychiatric illness, or aging populations, or the medical technology which can keep people alive almost indefinitely, then the laws are challenged and changed. ‘Completed life’ is the logical next step. It is a final step that might hopefully provide self-determination for the individual. That is, acknowledging that end-of-life decisions are a basic human right. It is a human right to die for whatever reason. However it seems this discussion comes after extensive experience with legislation for the terminally ill. There is a timeline a society must go through. But we see signs that the timeline is shortening. For example, in Canada and California (two places that have recently legislated for assisted dying), we already see questions being asked about completed life. People see that the medical legislation is already too restrictive. Here in The Netherlands, the criterion for a completed life is stated a 70+ years of age. This seems reasonable enough. I am very interested to watch further developments.’
What are your expectations with this new Dutch government?
‘As I understand it, this political situation will surely dampen the discussion. The climate is changing, but not in the right way. In fact, it looks like it’s swinging back. However, this is not happening everywhere. In the coming months, I will be speaking to groups of activists in Paris and Cape Town who want to talk about the new non-medical model, which looks a bit like that of ¢£¤. I am also talking with Miriam de Bontridder of De Einder about a legal basis to establish end-of-life decisions as a human right – the right-todie, similar to the-right-to-live – to see how this could be embodied in, for example, the European Convention on Human Rights. If you look at that legal convention, there is room for change.’
Reference
- The Sargo Euthanasia Machine is a 3D printable machine designed by Philip Nitschke to help people die peacefully. It works with liquid nitrogen, but it is not yet in use.
