A prominent professor of ethics who was once part of the Netherlands’ euthanasia bureaucracy has again voiced his qualms over the present interpretation and use of the Dutch euthanasia law in a lengthy interview published last week by the Protestant daily, Trouw.
Prof. Theo Boer is worried that current trends in the Netherlands are trivializing euthanasia to an extent that many who fought for legalization of “mercy killing” in the 1990s now privately express their opinion that it has gone too far. And it will be hard to turn back the clock, he acknowledges.
Theo Boer does not oppose euthanasia: on the contrary, he served as an ethicist for nine years on one of the five regional control commissions that monitor all cases of declared euthanasia in the Netherlands. He stepped down last September.
Over the years he screened records of over 4,000 of the 20,000 euthanasia cases that took place in the Netherlands while he was in office, including all the most controversial ones, which are submitted to all five commissions. During this time, euthanasia was increasingly performed on people with early dementia, psychological issues, or multiple complaints linked to the aging process. Recent cases have been deemed “compliant” with the law where a patient considered being taken up in care facility as an unbearable prospect.
As a professor of ethics at the Protestant Theological University of Amsterdam, Boer is comfortable with voluntary end-of-life decisions, provided they are only made for terminally ill patients who experience “unbearable suffering.”
But, he said, “We should have given more thought to the criteria” for decriminalized euthanasia, given the subjectivity of “unbearable suffering.”
Euthanasia activists touted the Dutch law by saying the severity of its norms would ensure no abuse would ever be committed. But twelve years after it came into force, euthanasia statistics have rocketed from 1,800 declared cases per year to 4,800 in 2013, reaching a total of more than 25,000 medical killings. In 2013, 46 psychiatric patients and 97 demented persons were euthanized. Over the years, roughly a hundred cases were deemed “not careful” by the control commissions and handed on to the public prosecution. But not a single case gave rise to a trial.
“These cases are mostly about incorrect dosage of the euthanaticum or question the independence of the second doctor who must statutorily give a second opinion,” Boer explained. “In all those years the commission was not convinced of the existence of ‘unbearable suffering’ two or three times at most” – but the reaction was often: “Who are we to judge?” “How can someone else judge on this point in the first place? I see, and understand, that doctors would be very embarrassed to have to tell a patient: ‘You may be saying that your suffering is unbearable, but your suffering is not unbearable.’ I find that almost inhuman,” says Boer.
The true picture is a more alarming one, according to Boer. He is particularly concerned about the “End of Life Clinic’s” growing role as a euthanasia provider. While Boer was “impressed” by the “dedication” of many of the doctors who work with the Clinic, which caters for patients whose own doctors are unwilling to perform euthanasia, the system is of itself “vulnerable,” he says. “There is no doctor-patient relationship prior to the demand for euthanasia, no help to obtain alleviation of pain, therapy or antidepressants, no space for more prolonged contact.”
Boer quotes the case of a patient who “shilly-shallied” about euthanasia after having obtained an agreement to go ahead: he received a message from the Clinic saying he should decide: “If you keep on hesitating, you’ll have to go through the input process again. We can’t guarantee this will take place with the same team.” The man was euthanized and the process was judged compliant with the legal criteria. “It’s high time for insurers and politicians to oblige the Clinic to provide more than just euthanasia,” says Boer. But in the public sphere there is no echo to his concerns.
This case still “haunts” Boer. Over the years, he has increasingly experienced something he never felt when he first joined the commission: “Going home with a knot in your stomach, brooding over a case at night, thinking of your name at the bottom of that file.” The feeling of being able “to accept in good conscience a majority decision” with which he disagreed increasingly disappeared: “You become a stranger to yourself.”
As regards the End of Life Clinic, Boer points out that just before it was approved and opened in 2012, he asked for more discussions about the short doctor-patient relationship that would precede euthanasia. He was told that it would be better to look into real life cases, one by one. The discussion did take place one year later, but too late: 29 cases had already been vetted by the commission. “You can’t go back on the jurisprudence.”
Ethicists have not been asking hard questions, says Boer.
He points out other excesses, such as double euthanasia where one of the two asks to be killed because the other, often the “informal caregiver,” is terminally ill. “The dependent partner will say: ‘I don’t want to go on without my beloved.’” In that case the “unbearable suffering” will be “going to a care facility”: “According to the letter of the law, it’s difficult in such cases to deny that euthanasia was ‘careful,’” explains Boer: it’s up to the doctors to determine whether suffering is unbearable and the commission must “respect” that.
But this means something is deeply wrong with the Dutch care system, according to Boer: “When you realize what people evidently think about growing old, about dependence and mourning, what people think about care facilities, and if you think about the possible attraction these sort of cases can exert, well…”
“You must realize that a growing number of the Dutch are saying: for me going to a care institution would equate with unbearable suffering. I’m worried about that. Care facilities are not getting any better. You’d say: if a care facility is a reason for people to get euthanasia, then you should do something about care facilities. If we don’t have the means to do that, then I’m afraid that in 2030 a large number of euthanasias will be performed because people are in deadly fear of the care facility,” he warned.
The availability of euthanasia is in itself a problem, especially for psychiatric patients, says Boer, even if he is prepared to say that for some tragic cases euthanasia might be the only way out. But he points to “other countries” that make medical criteria a prerequisite: “There is less paternalism over the medical components of suffering, less tutelage.”
Boer thinks perhaps “the point of no return has already passed” and pleads for a halt to new developments. “The question is whether we are going to allow ourselves to name the undesirable side-effects of democratized death.”
What he does make clear is that the Netherlands has shifted this far in accordance with a law that was supposed to prevent euthanasia getting out of hand. As journalist Gerbert van Loenen said at the Ottawa Euthanasia Symposium a few weeks ago: “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.”