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28/03/2011

The self-determination delusion

A Dutch action group for free will wants to give all people the right to assisted suicide. But can this be achieved without us ending up somewhere we never wanted to go? Gerbert van Loenen has grave doubts.

The Dutch citizens' action group Uit Vrije Wil (of one's own free will) says it wants to give all people the right to terminate their own lives. Elderly people who want to die should be able to receive assistance to end their lives, if they so wish. A total of 116,871 citizens have expressed their support for the law to be changed to facilitate this.

Assisted suicide is already permitted, but only when carried out by a physician in the case of acute suffering. The step advocated by Uit Vrije Wil would also make assisted suicide an option for people who are not experiencing hopeless and unbearable suffering, but who have reached their seventies and feel they have lived long enough. Specifically designated healthcare professionals would be made available to help these people die.

KNMG, the Royal Dutch Medical Association, advocates a middle way and argues that anyone who is elderly and weary is suffering from some degree of geriatric affliction which can be regarded as "hopeless and unbearable suffering". There are cases that have already been approved by the review committees that monitor compliance with the Dutch Euthanasia Act. Requests for assisted suicide from elderly persons can therefore be met within the boundaries of the Euthanasia Act, without the need for amendments.

Is it possible to adequately organise such assistance for elderly people who feel they have lived long enough? Can it be done in such a way that we know what we are getting ourselves into and do not end up somewhere we never wanted to go?

The people from Uit Vrije Wil are saying that this is for the elderly, that only people over the age of seventy should be able to get help to end their lives. But a meeting of Uit Vrije Wil and the Dutch Humanistic Union on 9 November 2010 in Amsterdam was attended by so many sympathisers, that a few individuals forgot that this was a public gathering. The famous neurobiologist Dick Swaab, one of the initiators, said: "The age limit is arbitrary. Just between you and me: this age limit was chosen for pragmatic reasons, so we would have a chance to obtain majority support in parliament."

And he is right. Everyone can see that it will be difficult to enforce such a limit. Assisted suicide would be permitted in a 72-year-old, but punishable in the case of a 68-year-old? A likely outcome is that people under the age of seventy who wish to die could also ask for help in ending their lives.

A second indication that the amendment advocated by Uit Vrije Wil will be difficult to formulate, was provided by fellow-initiator Eugene Sutorius during a symposium of the Dutch Lawyers Association Pro Vita on 15 January in Rotterdam. He explained that it is not easy to find the right name for the group of people they want to assist in ending their lives. "People who have lived long enough" is not the right description, "people who are done with life" is also not the right description; in fact there is no correct description, according to Sutorius. Uit Vrije Wil is therefore advocating the possibility of helping an indefinable, elusive group of people to commit suicide. However, you cannot determine the limits of something you cannot define. The fact that even Sutorius, a lawyer, has trouble finding an adequate definition indicates that, as soon as it passes into law, the initiative that is now intended only for a small group of elderly people, would develop into a vaguely defined right for people to help one another commit suicide.

And then, in addition to euthanasia carried out by physicians on people with unbearable suffering, we would also have assisted suicide carried out by non-physicians on people who are not suffering unbearably but still want to die. Nothing wrong with that, is there? If that's what those people want? The question not being asked by Uit Vrije Wil is whether this will generate pressure. Pressure on people to die.

It is no coincidence that Uit Vrije Wil consists of cultured, highly educated people who can quietly ponder ending their lives. In the real world, however, there are weak people, bad people, and there are also many good people who occasionally have bad moments. In this real world the bill proposed by Uit Vrije Wil could damage the right to life of vulnerable, difficult or maladjusted individuals.

Suppose the law is amended and suicide becomes a respectable option. And you have suffered from mental illness for twenty years. The arguments with your family, the loss of your friends, the looks you get from your neighbours are all daily reminders of the fact that you are crazy, maladjusted, that you cost a lot and have nothing to contribute. What if your children, your neighbours, the last acquaintances who still call you now and then, were to know that you could die if you wanted to. The mere fact that people around you know this will change your relationships. "You choose to continue living, so you have no right to complain."

Supposing suicide becomes just another option open to free individuals. And you are discharged from the drug rehabilitation clinic for the third time. In less than a week you are using again. Your friends and family have always supported you, but now your problems are driving them to desperation. And you have to option to die: you know it and they know it. In the Netherlands everybody has the right to decide, we will have this soundly organised by the year 2015. Perhaps your friends are open-minded enough to remind you of this option.

There is a risk that people will no longer be allowed to be troublesome. That pressure will be brought to bear on annoying, ill, maladjusted people to end it all. What starts as self-determination ends as condescending paternalism.
And even if an individual appears to choose suicide voluntarily, even if it does seem to be the much romanticised choice of the free human being for his Freitod, the question remains as to whether we should facilitate this, as the citizens' action group Uit Vrije Wil is advocating.

Because one individual's free will affects other individuals. Joost Zwagerman has described what suicide does to those who are left behind. Children whose fathers or mothers die by their own hand have higher than average chances of ending their lives, Zwagerman writes. Parental suicide increases the likelihood of their children also committing suicide. So how free is the choice of this child when it chooses to die?

Has Uit Vrije Wil ever met people who have lost not one but two relatives to suicide, often in quick succession? A son ends his life, his mother can't cope and follows suit - it happens, in the real world. Why are the people from Uit Vrije Wil acting as if they don't exist, these suicide chains?

Uit Vrije Wil speaks reassuringly about "evaluating the free will" of the individual who asks for help in ending his life. But we know how societies can exclude, malign and pigeonhole individuals. There is a real risk that people will be pushed into death. Which has very little to do with self-determination.

It has happened before in the Netherlands: something that began as self-determination ended up enabling paternalism. That is how voluntary euthanasia started some forty years ago. The euthanasia movement, the movement that aims to create acceptance for termination of life as an instrument for reducing suffering and of which Uit Vrije Wil appears to be the latest offshoot, once started with poignant examples of self-determination. These involved people who were in pain, who were in full possession of their faculties, who were asking to be allowed to die. After much debate physicians were permitted, under strict conditions, to meet their requests – something that is still impossible almost everywhere else in the world. Euthanasia, an active medical intervention to end an individual's life at his express request in cases of unbearable suffering without any prospect of improvement, is allowed only in the Netherlands and Belgium.

But always at the request of the person in question, or else it is murder, the euthanasia movement said in the 1980s. After the Supreme Court changed its position in 1984 and euthanasia was accepted in the Netherlands, the euthanasia movement started pushing the limits. Now they also advocate termination of life without request, albeit "under strict conditions".

In the early nineties physicians in the KNMG committee for the acceptability of life-terminating actions (Commissie Aanvaardbaarheid levensbeëindigend handelen - CAL), discussed the decisions that are sometimes made with regard to ending the lives of legally incompetent individuals. According to a majority in the committee these decisions expressly include the possibility of active termination of life. Euthanasia of babies, people with dementia or in comas must be possible under strict conditions. They may be unable to request it, but it must be permissible in some cases. After all, the objective is to avoid suffering and suffering is not limited to competent adults. In addition to voluntary euthanasia there must therefore also be room for termination of life without request.

Repeated surveys among physicians show termination of life without request – referred to in other countries as non-voluntary euthanasia – takes place between 500 and 1,000 times each year in the Netherlands. In all likelihood these are often emergency situations in which the physician could plead force majeure, but we don't know this because the cases are rarely reviewed by a judge.

Only a few cases involving termination of life without request were ever brought before a judge, in the early 1990s. These cases involved infants with limited life expectancy due to severe illness, who were also suffering. In two cases (Prins 1993, Kadijk 1994) the courts ruled that these medical interventions were in line with prevailing medical ethical standards.

Many physicians now consider termination of life normal medical practice in the case of infants who have a brief life expectancy because treatment is impossible or undesirable. It is also referred to as "stervenshulp" (assisted dying). According to the aforementioned survey termination of life in infants whose treatment options have been exhausted occurred approximately 70 times in 2005. From a legal perspective, however, administering medication to hasten death is termination of life and not normal medical practice.

In the first decade of the current century the discussion has entered a new phase. There are also infants whose treatment options have not been exhausted and who could live a long life without treatment but would suffer. Are physicians also allowed to actively end the lives of infants in such a situation? According to the survey about ten infants died this way in 2005. In these cases the "Groningen protocol" is consulted, the guideline accepted by the Dutch Association of Pediatricians. The government has legitimised this Groningen protocol by organising a procedure to report  cases of child euthanasia.

Now the next step is under discussion. What if a baby can survive without treatment and is not suffering now, but will suffer in the future? Some physicians are deliberating whether termination of life is an acceptable option in this case. This future suffering does not need to involve physical pain; the Committee for Pediatricians, Ethics and Law of the Dutch Association of Pediatricians mention the inability to communicate, the burden of treatment and an anticipated long life-expectancy of the disabled or sick baby as suffering that could legitimise termination of life.

From voluntary euthanasia to termination of a baby's life due to future disabilities is quite a development. One could argue that it is a good thing that we have come this far, one can argue it is a bad thing; in both cases it depends on the arguments. But there is no denying that we have covered a lot of ground over the course of the past forty years. That what started as killing on request has ended with lives being terminated without request. That what started as self-determination ultimately also made it possible for decisions to be made about the lives of others.

At a private conference in 1990 Els Borst, a well-known figure in the euthanasia movement, said that this progression was always the objective: "It was a matter of tactics: we could gradually win the field for the acceptance of euthanasia by starting with this category." By "this category" Borst, who later became minister of health and who saw to it that the Euthanasia Act was passed in parliament, meant the people who were able to ask for euthanasia. In other words: Borst started out presenting euthanasia as termination of life at the request of the person due to die, with the implicit aim of subsequently making it possible without request, for individuals who are unable to ask for euthanasia, for example people with dementia and babies.

What started with an appeal to self-determination ("if a person is in terrible pain and asks to be allowed to die, then that should not be a problem"), has led to termination of life in individuals who are unable to express their will and whose lives other people assume to be worthless ("it is better for him to be at peace now"). What happened to self-determination here? Is it not the ultimate act of paternalism to decide for a severely disabled individual that it would be better if they did not exist?

Anyone who really thinks self-determination is important should think long and hard about whether it is not better to go back to the Euthanasia Act, where termination of life on request is allowed but termination of life without request is not

Instead of pursuing this debate, the euthanasia movement, this time under the name Uit Vrije Wil, is proposing yet another step: assisted suicide for the elderly. Again with the risk that what starts with self-determination ends in paternalism and a threat to vulnerable individuals.

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Gerbert van Loenen is a journalist and deputy-editor of Dutch paper Trouw. He is also the author of "Hij had beter dood kunnen zijn. Oordelen over andermans leven" (better off dead. Decisions about the lives of others), ISBN 978 90 5515 393 0.
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