Catholic Medical Quarterly Volume 65(4) November 2015
Dutch Experiences on Regulating Assisted Dying
Lindeboom Professor of Health Care Ethics, Kampen
The Netherlands stand out as the first country in the world to have legalized assisted dying. After decades of discussions, following several makeshift arrangements in the 1980s and 90s, the Act on Voluntary Euthanasia and Physician Assisted Suicide passed Parliament in 2001 and was enacted a year later.
Given the fact that the Dutch were the first, what can be learnt from the Dutch experience? Is it true, as advocates say, that assisted dying can be efficiently and transparently controlled? Did any of the claims about a slippery slope become reality? Should other countries follow the Dutch and the Belgian example? In this address, I would like to shed some light upon these questions from my perspective as an academic, a citizen, an ethicist, and a former member of a euthanasia review committee.
Let us begin to look at the Dutch law on assisted dying. According to Dutch law, killing another person is a crime, but under certain conditions a physician who kills will not be prosecuted. First, there should be a request from the patient; second, there should be unbearable suffering without prospect of improvement; third: the doctor should inform the patient of his situation; fourth: doctor and patient together should have come to the conclusion that there is no acceptable alternative; five: the doctor should have consulted a colleague; and, finally, the assisted dying should take place in a medically sound manner. Afterwards, the doctor should report the case to one of the five regional review committees. These committees assess a case in hindsight and decide whether a doctor has acted in accordance with the law. Those committees onsist of three persons: a lawyer, a physician, and an ethicist. When a case meets the criteria, the doctor is notified and the dossier will be closed; when a case does not meet the criteria, it is sent to the public prosecutor and to the Health inspector general. This happens about 6 times a year on a total of 4,000, mostly for procedural mistakes or omissions. In 14 years’ time, not one case has led to a prosecution.
In 2005, I was invited to join one of the five committees. In accordance with both Natural Law and Western human rights traditions, I consider the active termination of a human life to be intrinsically problematic. The Dutch word for society is ‘samenleving’. The word is composed of ‘samen’, which means ‘together,’ and ‘leving’ which means ‘living.’ A society is a living-together. Both the togetherness in the form of solidarity, and the living should be protected by law. There may nevertheless be the odd exception to the rule. Imagine someone standing at the side of a road when truck crashes into a concrete wall and catches fire. The driver is stuck in his cabin and begs the bystander, who happens to have a gun, to terminate his life before the flames get to him. Naturally, of course, the bystander will be reluctant. The first thing to do is not to grab the gun and kill the driver but to call for help, and in the meantime to try to get him out of the cabin. But if there really is no a chance of help – perhaps then killing may be excused, although with reluctance. The act of killing is an intrinsically problematic act. Now let us extend this example a bit, and imagine that the bystander has two guns: one conventional one and one that contains an anesthetic. Most likely, most people would prefer to use the latter. Not only would they prefer not to be killers, but there is also a chance, however small, that help will arrive and that the driver may stay unharmed after all. This is why we all, as hard as we can, should strive to provide the best possible palliative care that is accessible to all.
But what if there would be situations in which palliative care would not be sufficient to ease the unbearable suffering? This is where the Dutch law comes in. Killing a patient can be excused, but only in exceptional cases, only if a patient asks for it, and only if the physician feels that he is standing with his back to the wall. After the many discussions and negotiations, I considered this law a respectful compromise in an utterly divided landscape with a very strong right-to-die lobby.
So what happened after the law was enacted? The first five years after it became effective, assisted dying remained level – and even fell in some years. In 2007 I concluded that there doesn’t need to be a slippery slope when it comes to physician assisted deaths. Most of my colleagues agreed, even those who had been skeptical before. However, since then developments have occurred that I find worrisome. But let me start with some good news: the law on assisted dying has in fact led to a practice that is transparent. The review committees can boast a reporting rate of close to 100%. Practices that formerly took place in hiddenness are now more or less controllable. And despite the claim of some, the law has not led to a deterioration of palliative care. In fact, the quality of palliative care has increased considerably in the past decade. Nevertheless, here are some concerns. First, as of 2007, the number of assisted deaths has increased by 15% annually, year after year. Whereas the numbers in 2003 were well under 2,000, the figures were well above the 5,000 line in 2014. One out of 25 people in the Netherlands now dies with the assistance of a doctor. My conclusion is that once assisted dying becomes available, the level of palliative care doesn’t matter that much. What was once considered a last resort, now becomes a default mode of dying for an increasing number of people. The unbearable character of the suffering is lesser described in terms of physical suffering and more in terms of ‘meaningless waiting’.
A second concern is a shift in the type of patients. Whereas in the first years hardly any patients with psychiatric illnesses or dementia appear in reports, these numbers are now sharply on the rise. Cases have been reported in which a large part of the suffering consisted in age related complaints. Loneliness occurs in 50 out of the last 500 cases that I reviewed before stepping back. Many of these patients could have lived for months, others for years or even decades. We have seen a number of ground breaking cases: ‘euthanasia for two’, for example couples in which the caregiver gets cancer and his partner chooses to die the same day and the same way; euthanasia in blindness; euthanasia for a man with autism who fears retirement; assisted dying for a mother of two suffering from tinnitus. Undeniably, assisted dying for one group of patients leads to demands from others.
Thirdly. In 2012, under the name ‘End of Life Clinic,’ a nationwide network of travelling euthanasia teams became active. On average, these doctors see a patient three times before administering the lethal drugs. There is no patient-doctor relationship prior to a request. More than forty teams have been formed, and hundreds of cases are done each year. Whereas other doctors have an array of palliative care at their disposal, doctors of the End of Life Clinic have only two options: to administer life-ending drugs or to send the patient home empty handed. And whereas an average doctor will provide assisted dying perhaps once in one or two years, some of these doctors report two-digit numbers each year.
Fourthly, there is a shift in public opinion. Whereas in the beginning assisted dying was seen as a last resort, public opinion is shifting towards considering it a right, with a corresponding duty on doctors to act. A law that is now in the making obliges doctors who refuse to actively refer their patients to a ‘willing’ colleague. In a recent analysis of thirty documentary films on the topic, Dutch journalist Gerbert van Loenen concludes that without exception all productions support assisted dying. Critical questions are practically banned from the fore. Backed by the media, pressure on doctors from patients and their relatives can be intense. An unknown, but considerable number of patients consider their suffering too big of a burden for their relatives and ask to die of concern for their wellbeing. According to a recent survey by the Royal Dutch Medical Association, Dutch physicians continue to consider euthanasia as a heavy burden and are concerned about pressure on the side of the public. In the past years, even the Review Committees start acting as stimulators to assisted dying, encouraging physicians to explore the full width of the law.
For years I supported the Dutch law on assisted dying. But as we speak, I have more concerns now than ever before. I am worried that the liberty of some may lead to a loss of freedom of others. I am worried that more and more elderly people will consider themselves too big a burden. And I fear the moment at which a future government will rule that children should contribute financially to the health care of their parents. My concerns are shared by many, even of those who see no intrinsic objections to assisted dying. The Netherlands has considered itself a guiding country when it comes to assisted dying. A professional guide will not lead his clients down a road that he knows to be risky. For now, I therefore recommend countries that are considering to legalize assisted dying, to wait and see where the Netherlands and Belgium will be in ten or twenty years. I am not saying that a country should never make a legal arrangement. It may have to. But if one views assisted dying only as a last resort – as I think most countries that are contemplating legalization do – then first have a look at the Dutch and the Belgian examples. It could be that the terms and conditions of their laws should have been stricter. But perhaps the mere existence of a law is an invitation to see assisted dying as a normality instead of a last resort. The Dutch and Belgian laws on assisted dying, instead of being a respectful compromise, much rather function as stepping stones towards more radical changes in the way we organize our deaths. The offer of assisted dying may be a relief to some. But it also sends unwanted signals to terminal patients, elderly citizens, to people suffering from life, yes, to anyone who knows that life can very, very hard. The signal that death may be a good remedy for suffering. The signal that a natural death is a terrible and inhumane death. The signal that autonomy equals dignity. The signal that in the end we can do without you and that we’re not the ones to keep you in the boat. Now there is no ban on suicide and however tragic such decisions may be, I think there shouldn’t be such a ban. Needless to say, we should respect if patients refuse life-prolonging treatment. But actively helping them to die is of a different category. As I said, I can sympathize with those acts on an individual and exceptional basis. But I am no longer convinced that such exceptional acts deserve a legal basis. A society’s signal that it is willing to organize the death for its citizens simply involves too many risks.
Theo Boer is professor of health care ethics at Kampen Theological
For nine years, he was a Member of a Regional Review
For the Dutch Government, five such committees assess
whether a euthanasia case was conducted in accordance with the Law.
The views expressed here represent his views as a professional ethicist,
not of any institution.