A life hardly worth living! Euthanasia and physician assisted suicide in the Netherlands

This is the edited text of a talk given by Gerbert van Loenen in the USA in 2014. 

The Netherlands changed profoundly since euthanasia and physician-assisted suicide were legalized. The way people cope with suffering, and, more importantly, with people who are suffering, is no longer as it used to be.

It all looked so easy in the beginning.

The debate about euthanasia and physician-assisted suicide started with examples of competent people who were in pain and demanded euthanasia or physician-assisted suicide. I'd like to call these the classic cases.

It always starts with the classic cases. Every debate about right-to-die laws starts with the more obvious and easier examples. This was how it started in the Netherlands thirty years ago. And this is how it starts today in other countries where physician-assisted suicide and euthanasia are being discussed, like France, Germany and also here in Canada.

These same classic cases are the ones that are mentioned in the media, in movies, in debates about euthanasia and physician-assisted suicide. They are the examples that are easy to understand, even if you're not yet convinced that right-to-die laws should be enacted.

In these debates the main argument for right-to-die laws is the autonomy of the individual. Someone who is suffering should be able to decide for himself if he wants to live or prefers to die. Autonomy is indeed an essential value in our western societies. Where we live, what we do, whom we love is up to us. And so it seems only logical that we should also have the right to decide for ourselves when we die. The patient who has a good reason for wanting to die, should not be left out in the cold; physicians should have the right to help him die with dignity.

In the Netherlands, a physician has the legal right to administer a lethal dose of drugs to a patient who suffers severely and who demands to die. If the patient takes these drugs himself, it is called physician-assisted suicide, if the physician injects the drugs, it is called euthanasia. Both are legal in the Netherlands.

Euthanasia is only legal if the patient explicitly demands it. Without a patient's request, euthanasia is murder, as it was stressed initially in the Netherlands and today in other countries where right-to-die laws are being discussed.

However, in the Netherlands, euthanasia practice did not remain limited to the classic cases of competent patients who are suffering. As soon as euthanasia was made legal by the highest court, the next debate started.

For instance, incompetent patients also suffer. If Uncle Harry can demand euthanasia when he becomes ill, should his nephew Garret really continue to suffer when he is in trouble, just because Garret has an intellectual disability? If Aunt Monica can demand euthanasia when she falls ill, should her niece Catherine really be forced to endure pain, just because Catherine is a child?

The idea that it is feasible to limit euthanasia to competent people has turned out to be unrealistic. If you accept that suffering can be alleviated by terminating the patient's life, it is not easy to define new limits. At least in the Netherlands we are still looking for the new limits.

After 30 years of experience with euthanasia and physician-assisted suicide in the Netherlands, there is no unambiguous conclusion. There seems to be a sunny side, as well as a dark side.

The positive side is represented by the thousands of uncontroversial cases where patients get euthanasia at their request and, only in a minority of cases, physician-assisted suicide. Around 3.5 percent of the people who died in 2013 in the Netherlands died from a lethal dose of drugs administered or handed to them by a physician for the purpose of terminating their lives. These cases were almost always reported, the reported cases were reviewed by review committees that rarely found irregularities. Most of these cases involved cancer patients with limited life expectancies who died at home with the help of their general practitioner.

Ladies and gentlemen, these are the classic euthanasia cases, they do exist and they can be monitored by the relevant authorities. These are the examples that my fellow countrymen like to refer to when they present lectures abroad about this gem of Dutch society. And they are right; the vast majority of cases where people's lives are being terminated are in accordance with the law.

However, there also is the less easily controlled and only semi-regulated practice of termination of life without request, or non-voluntary euthanasia. Legally these cases are based on the principle of necessity, or force majeure: in emergency situations and under certain conditions a physician is allowed to do things that he is normally not allowed to, namely to terminate the lives of his patients without request.

In 2010 there were about 300 cases of termination of life without request in the Netherlands, before there were up to 1000 cases of termination of life without request per year in the Netherlands. We know this thanks to an anonymous survey amongst physicians that is being repeated every five years. The number is based on an extrapolation.

What is going on in these cases of termination of life without request?

We do not know exactly, as most of them are not reported. A number of these cases concerns severely handicapped or ill infants.

Like the son of a father I interviewed, who had been born with spina bifida. Eleven years ago the father agreed to have the life of his baby son terminated. The baby was transferred to the Groningen University Hospital, where the doctors told the parents the prognosis. Their boy would require many operations and he would probably have to live in an asylum for the handicapped.

Trying to imagine what kind of life was awaiting his son, the father realized that he wouldn't be able to endure such a life himself, so he couldn't demand that his son did, he explained to me. The parents and the physicians agreed that it was better to terminate the life of this boy. Between 1997 and 2004 pediatricians reported 22 cases of termination of life of infants with spina bifida in the Netherlands.

These instances of non-voluntary euthanasia, that jeopardize the image of euthanasia as a symbol of the autonomy of the citizen, are not very controversial in the Dutch media, in parliament or in medical associations. Most of these cases are not reported and take place surreptitiously.

More important than the figures, however, is the mentality, or the way people think and talk about illness and handicaps, and about ill and handicapped people. In the media, there are many debates about life that is marked by severe handicaps or disease. Typically, the question that pops up in these debates is whether these lives are still worth living, or death would be a relief?

The motivation for this way of thinking is utterly humanistic. The ideal is that every human being develops his or her human potential, that every human will be more developed tomorrow than he is today. This also goes for people who are challenged by handicaps or disease; they are entitled to support to develop themselves as much as their fellow-citizens. The Dutch welfare system is lavish compared to most other countries; everybody is given a chance to develop himself, no matter what it takes.

There are people, however, who are so ill or so severely handicapped that, regardless of the effort, they will remain unable to develop themselves. All you can do for these people is take care of them.

The Dutch reaction to these cases appears to be one of desperation.

Or to quote a mother who talked about her daughter with multiple disabilities on public television:

"She knows nothing, can do nothing, she really is nothing."

This is the paradox of the high-quality care in the Netherlands: we have such lofty ideals about being human that we are not satisfied when, despite our best care, a person does not live up to those ideals. And then we start discussing the worth of his or her life, then we start thinking of death as a relief. In this way an idealistic image of humankind and good care can go together with a people-threatening practice.

I just quoted a mother who said about her handicapped child: "She knows nothing, can do nothing, she really is nothing." This mother has an agreement with her daughter's physicians that they will not treat life-threatening illnesses and she has confessed she is waiting for the moment that such an illness will present itself: no antibiotics for the handicapped child. What is most striking is not that this mother is desperate and this is her decision, but that there was no public outcry in the Netherlands as she said this on national television.

We seem to have lost the sense of equanimity that allows us to accept forms of life that seem to be pointless. The Dutch want to do something, they want to act and find solutions. It is these activist, humanist ideas about mankind that foster a debate about euthanasia and termination of life: life must be worthwhile and when it is not, we must do something about it.

And still the debate goes on.

Many citizens in the Netherlands are now trying to broaden the scope of the euthanasia law. Today, they try to help people who are, as they call it, 'done with life'. This latest expansion of the Dutch debate focuses on elderly people who see no reason to go on living and who long for death. If death does not come, they should be assisted in ending their lives.

Assisted suicide is already permitted under the Dutch Euthanasia Act, but only when carried out by a physician in the case of severe suffering. The step advocated now 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.

Over 116,000 Dutch citizens have indicated they support this goal and asked parliament to change the law. The Dutch parliament expressed little enthusiasm for the bill in early 2011. However, the advocates are hoping to come back in the future, when the rapidly changing political landscape is more receptive to their cause.

Dutch physicians have not rejected this proposal out of hand, but they did not welcome it either. KNMG, the Royal Dutch Medical Association, advocates a middle course and argues that anyone who is elderly and weary is suffering from some degree of geriatric affliction which can, with some effort, be regarded as 'hopeless and unbearable suffering'.

There are indeed cases that have already been approved by the review committees that monitor compliance with the Dutch Euthanasia Act. Many requests for assisted suicide from elderly persons who are 'done with life' can therefore be met within the boundaries of the Euthanasia Act, without the need for amendments.

This shows how flexible the Dutch euthanasia law really is, and how flexible the words 'hopeless and unbearable suffering' are.

Then there is another debate, about euthanasia for children. The law allows euthanasia for children aged 12 years and older, when their parents and the children themselves agree.

Termination of life of severely suffering babies has been regulated in 2005. Eduard Verhagen, the same physician who helped formulate these regulations for termination of life of severely suffering newborns, now proposes to move on and also regulate the termination of life of severely suffering children between the ages of one and twelve years old. His argument is that children older than one year old can obviously suffer as well.

This example shows that it is indeed difficult to limit termination of life to competent patients who demand to die. As soon as the principle is accepted that under certain conditions severe suffering may be ended by ending the life of the patient, it is difficult to stop the practice and limit it to a certain category of patients.

Then the fate of patients with Alzheimer's disease was debated. Due to the disease, the patients can become incompetent over time. According to the law, they can get euthanasia if they drew a living will before they became incompetent. However, physicians in the Netherlands prefer to act not only on the basis of a living will; they want to hear the patient repeat the wishes included in that will.

Until recently, euthanasia or physician-assisted suicide, were indeed only carried out in the case of patients who were still competent, in other words, at the early stages of Alzheimer's disease. Recently, however, the euthanasia review committees have approved cases of patients with advanced Alzheimer's, who could not repeat their earlier wish to die but whose lives were ended by their physician on the basis of their earlier stated wills. This means that we are not entirely sure whether these patients were still aware of their wish to die on the day this wish was about to be realized.

In 2013, dementia was mentioned in 97 cases of euthanasia or physician-assisted suicide that doctors reported to the review committees.

Another category of patients that is being debated today are mentally ill people. For a long time, psychiatrists in the Netherlands were unwilling to help their patients die because their competence was potentially affected by their psychiatric disorders. The patient's wish to die can be a symptom of their psychiatric disorder. Psychiatrists have been criticized for this unwillingness, which has been explained as a denial of the right to self-determination of patients with psychiatric diseases.

Recently, a small number of cases of euthanasia or physician-assisted suicide have been reported by psychiatrists. These were cases where they thought that there were no therapies left to help their patients. In 2013, psychiatric disorders were mentioned in 42 cases of euthanasia or physician-assisted suicide that were reported to the review committees.

Then there are some random cases that have caused a stir recently. There was, for instance, the story of a woman whose life was terminated because she suffered from a severe form of tinnitus, or bustling in her ears.

Or the story of a civil servant with a long history of depressions, 63 years old, who was very lonely and couldn't face his retirement. Both the woman suffering from a severe bustling in her ears and the lonely man who was about to retire got the help they were looking for from the so-called 'end-of-life clinic'.

This clinic in The Hague is an initiative of the Dutch right-to-die movement NVVE. This is where patients whose own doctors refuse to help them to die get a second chance. The end-of-life clinic disposes of 30 mobile teams that help patients to die at home. This end-of-life clinic aims to work strictly according to the law. However, two cases it reported have already been rejected by the euthanasia review committees so far. (three cases now see HERE)

From euthanasia in the classic sense to termination of life in newborns with spina bifida, is unmistakably a considerable development. The road from assisted suicide because a person is in pain as a result of cancer, to euthanasia because a person is lonely and weary of life or suffering from a severe ringing in her ears is also quite impressive.

It's up to you to judge this development. You may be of the opinion that it is a disgrace that the position of the Netherlands has shifted this far, you can also be of the opinion that in all of these cases termination of life is the best of the available options, is indeed the lesser evil. The one thing you cannot do is deny that the boundaries are continually pushed back, moving the Netherlands a considerable distance from its original position.

The discussion about one category of people for whom termination of life is suggested draws attention to an adjacent category of suffering individuals that the same arguments for termination of life can be applied to. And so the position of the Netherlands is shifting. Again, we need not consider this a disgrace. But the shift itself cannot be denied.

Making euthanasia and physician-assisted suicide legal started a development we did not foresee. The old limit 'thou shalt not kill' was abandoned; a new limit is yet to be found.

This drawback of the euthanasia practice, the cases that are more difficult to legitimate like the termination of life of severely handicapped babies, is less frequently mentioned. Nor is there much debate about the shift towards ever new categories of patients for whom euthanasia is proposed.

No wonder, the number of lawful cases of euthanasia or physician-assisted suicide vastly outnumbers the controversial cases of termination of life without the request of the patient. Many Dutch people have experienced the more classic forms of euthanasia or physician-assisted suicide in their own families or among their own friends. The majority of these cases concerned patients who were suffering from cancer and could die at home with the help of their general practitioner. This is seen as something very positive by most people. Opinion polls show a vast majority of citizens who support the euthanasia law in the Netherlands today. Most Dutchmen think of the euthanasia law as a good thing, something they want to recommend to the rest to the world.

You can think of the Netherlands as a laboratory. The Dutch experience can help you to understand what might happen in the future once you enact right-to-die laws.

Being a proud Dutchman myself, I was one of those eager to recommend the Dutch euthanasia law to the entire world twenty years ago. At the end of my speech I'd like to tell you why I started asking questions.

In January 1996, surgery was performed on my partner's brain because of a tumour. The operation failed, his brain was severely injured afterwards. He lived another ten years, crippled, confused and with a character that had changed. I loved him nevertheless.

It was a shock to hear friends question whether his life was still worth living. 'He would have been better off dead', was what one of his friends said. Another friend said to him: 'It's your choice to continue living, so stop complaining.' He hardly ever complained by the way, but this remark shows that living with a disability can now be seen as a choice, not as a plight.

These remarks were a kind of wake-up call for me and I started to write articles about how people in the Netherlands not only judge the worth of their own lives, which is in line with the Euthanasia law, but also the lives of other people. It was to be expected that people think: 'I would not want to live on if I were in her position', or: 'I would prefer to die if I were like him'. These opinions are then projected onto the people who are in such a difficult position. According to Dutch law, you have the right to demand your own death if you feel that your life has become unbearable. People confound this with the right to make judgments about the quality of the lives of others, which we should not judge at all.

Gerbert Van Loenen's book: 'Do You call this a Life? Blurred Boundaries in the Netherlands' Right-to-Die Laws' will soon be available in English.

See also a video recording of Gerbert's talk HERE