Death on demand: has euthanasia gone too far?
Fri 18 Jan 2019 06.00 GMT
Countries around the world are making it easier to choose the time and manner of your death. But doctors in the world’s euthanasia capital are starting to worry about the consequences
By Christopher de Bellaigue
Fri 18 Jan 2019 06.00 GMT Last modified on Fri 18 Jan 2019 09.09 GMT
Last year a Dutch doctor called Bert Keizer was summoned to the house of a man dying of lung cancer, in order to end his life. When Keizer and the nurse who was to assist him arrived, they found around 35 people gathered around the dying man’s bed. “They were drinking and guffawing and crying,” Keizer told me when I met him in Amsterdam recently. “It was boisterous. And I thought: ‘How am I going to cleave the waters?’ But the man knew exactly what to do. Suddenly he said, ‘OK, guys!’ and everyone understood. Everyone fell silent. The very small children were taken out of the room and I gave him his injection. I could have kissed him, because I wouldn’t have known how to break up the party.”
Keizer is one of around 60 physicians on the books of the Levenseindekliniek, or End of Life Clinic, which matches doctors willing to perform euthanasia with patients seeking an end to their lives, and which was responsible for the euthanasia of some 750 people in 2017. For Keizer, who was a philosopher before studying medicine, the advent of widespread access to euthanasia represents a new era. “For the first time in history,” he told me, “we have developed a space where people move towards death while we are touching them and they are in our midst. That’s completely different from killing yourself when your wife’s out shopping and the kids are at school and you hang yourself in the library – which is the most horrible way of doing it, because the wound never heals. The fact that you are a person means that you are linked to other people. And we have found a bearable way of severing that link, not by a natural death, but by a self-willed ending. It’s a very special thing.”
This “special thing” has in fact become normal. Everyone in the Netherlands seems to have known someone who has been euthanized, and the kind of choreographed farewell that Keizer describes is far from unusual. Certainly, the idea that we humans have a variety of deaths to choose from is more familiar in the Netherlands than anywhere else. But the long-term consequences of this idea are only just becoming discernible. Euthanasia has been legal in the
Netherlands for long enough to show what can happen after the practice beds in. And as an end-of-life specialist in a nation that has for decades been the standard bearer of libertarian reform, Keizer may be a witness to the future that awaits us all.
In 2002, the parliament in the Hague legalized euthanasia for patients experiencing “unbearable suffering with no prospect of improvement”. Since then, euthanasia and its close relation, assisted dying, in which one person facilitates the suicide of another, have been embraced by Belgium and
Canada, while public opinion in many countries where it isn’t on the national statute, such as Britain, the US and New Zealand, has swung heavily in favor.
The momentum of euthanasia appears unstoppable; after
Colombia, in 2015, and the Australian state of
Victoria, in 2017, Spain may be the next big jurisdiction to legalize physician-assisted death, while
one in six Americans (the majority of them in California) live in states where it is legal. In Switzerland, which has the world’s oldest assisted dying laws, foreigners are also able to obtain euthanasia.
If western society continues to follow the Dutch, Belgian and Canadian examples, there is every chance that in a few decades’ time euthanasia will be one widely available option from a menu of possible deaths, including an “end of life” poison pill available on demand to anyone who finds life unbearable. For many greying baby boomers – veterans of earlier struggles to legalize abortion and contraception – a civilized death at a time of their choosing is a right that the state should provide and regulate. As this generation enters its final years, the precept that life is precious irrespective of one’s medical condition is being called into question as never before.
As the world’s pioneer, the Netherlands has also discovered that although legalizing euthanasia might resolve one ethical conundrum, it opens a can of others – most importantly, where the limits of the practice should be drawn. In the past few years a small but influential group of academics and jurists have raised the alarm over what is generally referred to, a little archly, as the “slippery slope” – the idea that a measure introduced to provide relief to late-stage cancer patients has expanded to include people who might otherwise live for many years, from sufferers of muscle-wasting diseases such as multiple sclerosis to sexagenarians with dementia and even mentally ill young people.
Perhaps the most prominent of these skeptics is Theo Boer, who teaches ethics at the Theological University of Kampen. Between 2005 and 2014, Boer was a member of one of the
five regional boards that were set up to review every act of euthanasia and hand cases over to prosecutors if irregularities are detected. (Each review board is composed of a lawyer, a doctor and an ethicist.) Recent government figures suggest that doubts over the direction of Dutch euthanasia are having an effect on the willingness of doctors to perform the procedure. In November, the health ministry revealed that in the first nine months of 2018 the number of cases was
down 9% compared to the same period in 2017, the first drop since 2006. In a related sign of a more hostile legal environment, shortly afterwards the judiciary announced the
first prosecution of a doctor for malpractice while administering euthanasia.
It is too early to say if euthanasia in the Netherlands has reached a high-water mark – and too early to say if the other countries that are currently making it easier to have an assisted death will also hesitate if the practice comes to be seen as too widespread. But it is significant that in addition to the passionate advocacy of Bert Keizer – who positively welcomes the “slippery slope” – Boer’s more critical views are being solicited by foreign parliamentarians and ethicists who are considering legal changes in their own countries. As Boer explained to me, “when I’m showing the statistics to people in Portugal or Iceland or wherever, I say: ‘Look closely at the Netherlands because this is where your country may be 20 years from now.’”
“The process of bringing in euthanasia legislation began with a desire to deal with the most heartbreaking cases – really terrible forms of death,” Boer said. “But there have been important changes in the way the law is applied. We have put in motion something that we have now discovered has more consequences than we ever imagined.”
Bert Keizer carried out his first euthanasia in 1984. Back then, when he was working as a doctor in a care home, ending the life of a desperately ill person at their request was illegal, even if prosecutions were rare. When a retired shoemaker called Antonius Albertus, who was dying of lung cancer, asked to be put out of his misery, Keizer found that two sides of himself – the law-abiding doctor and the altruist – were at odds.
“Antonius wasn’t in pain,” Keizer told me, “but he had that particular exhaustion that every oncologist knows, a harrowing exhaustion, and I saw him dwindle before me.” In the event, Keizer, who as an 11-year-old watched his mother suffer an excruciating death from liver disease, went with the altruist. He injected 40mg of Valium into Antonius – enough to put him in a coma – then gave him the anti-respiratory drug that ended his life.
Keizer was not investigated after reporting an unnatural death at his own hand, and his career did not suffer as he feared it might. But what, I asked him, had prompted him to break the law, and violate a principle – the preservation of life – that has defined medical ethics since Hippocrates? Keizer paused to brush away a spider that had crawled uninvited on to my shoulder. “It was something very selfish,” he replied. “If ever I was in his situation, asking for death, I would want people to listen to me, and not say, ‘It cannot be done because of the law or the Bible.’”
Over the past few decades the Bible has been increasingly sidelined, and the law has vindicated the young doctor who put Antonius to sleep. As people got used to the new law, the number of Dutch people being euthanized began to rise sharply, from under 2,000 in 2007 to almost 6,600 in 2017. (Around the same number are estimated to have had their euthanasia request turned down as not conforming with the legal requirements.) Also in 2017, some 1,900 Dutch people killed themselves, while the number of people who died under palliative sedation – in theory, succumbing to their illness while cocooned from physical discomfort, but in practice often dying of dehydration while unconscious – hit an astonishing 32,000. Altogether, well over a quarter of all deaths in 2017 in the Netherlands were induced.
One of the reasons why euthanasia became more common after 2007 is that the range of conditions considered eligible expanded, while the definition of “unbearable suffering” that is central to the law was also loosened. At the same time, murmurs of apprehension began to be heard, which, even in the marvelously decorous chamber of Dutch public debate, have risen in volume. Concerns center on two issues with strong relevance to euthanasia: dementia and autonomy.
Many Dutch people write advance directives that stipulate that if their mental state later deteriorates beyond a certain point – if, say, they are unable to recognize family members – they are to be euthanized regardless of whether they dissent from their original wishes. But Last January a medical ethicist called Berna Van Baarsen caused a stir when she resigned from one of the review boards in protest at the growing frequency with which dementia sufferers are being euthanized on the basis of a written directive that they are unable to confirm after losing their faculties. “It is fundamentally impossible,”
she told the newspaper Trouw, “to establish that the patient is suffering unbearably, because he can no longer explain it.”
Van Baarsen’s scruples have crystallized in the country’s first euthanasia malpractice case, which prosecutors are now preparing. (Three further cases are currently under investigation.) It involves a dementia sufferer who had asked to be killed when the “time” was “right”, but when her doctor judged this to be the case, she resisted. The patient had to be drugged and restrained by her family before she finally submitted to the doctor’s fatal injection. The doctor who administered the dose – who has not been identified – has defended her actions by saying that she was fulfilling her patient’s request and that, since the patient was incompetent, her protests before her death were irrelevant. Whatever the legal merits of her argument, it hardly changes what must have been a scene of unutterable grimness.
The underlying problem with the advance directives is that they imply the subordination of an irrational human being to their rational former self, essentially splitting a single person into two mutually opposed ones. Many doctors, having watched patients adapt to circumstances they had once expected to find intolerable, doubt whether anyone can accurately predict what they will want after their condition worsens.
The second conflict that has crept in as euthanasia has been normalized is a societal one. It comes up when there is an opposition between the right of the individual and society’s obligation to protect lives. “The euthanasia requests that are the most problematic,” explains Agnes van der Heide, professor of medical care and end-of-life decision-making at the Erasmus Medical Center in Rotterdam, “are those that are based on the patient’s autonomy, which leads them to tell the doctor: ‘You aren’t the one to judge whether I am to die.’” She doesn’t expect this impulse, already strong among baby boomers, to diminish among coming generations. “For our young people, the autonomy principle is at the forefront of their thinking.”
The growing divisions over euthanasia are being reflected in the deliberations of the review boards. Consensus is rarer than it was when the only cases that came before them involved patients with late-stage terminal illnesses, who were of sound mind. Since her resignation, Berna Van Baarsen has complained that “legal arguments weigh more and more heavily” on the committees, “while the moral question of whether in certain cases good is done by killing, threatens to get snowed under”.
In this new, more ambiguous environment, the recent dip in euthanasia numbers doesn’t seem surprising. Besides their fear of attracting prosecutors’ attention, some doctors have been irked by the growing public perception that they are no-questions-asked purveyors of dignified death, and are pushing back. For Dutch GP's, fielding demands for euthanasia from assertive patients who resent the slightest reluctance on the part of their physician has become one of the more disagreeable aspects of their job.
“In the coldest weeks of last winter,” Theo Boer told me, “a doctor friend of mine was told by an elderly patient: ‘I demand to have euthanasia this week – you promised.’ The doctor replied: ‘It’s -15C outside. Take a bottle of whisky and sit in your garden and we will find you tomorrow, because I cannot accept that you make me responsible for your own suicide.’ The doctor in question, Boer said, used to perform euthanasia on around three people a year. He has now stopped altogether.
Although he supported the 2002 euthanasia law at the time, Boer now regrets that it didn’t stipulate that the patient must be competent at the time of termination, and that if possible the patient should administer the fatal dose themselves. Boer is also concerned about the psychological effect on doctors of killing someone with a substantial life expectancy: “When you euthanize a final-stage cancer patient, you know that even if your decision is problematic, that person would have died anyway. But when that person might have lived decades, what is always in your mind is that they might have found a new balance in their life.”
In November 2016, Monique and Bert de Gooijer, a couple from Tilburg, became minor celebrities when a regional paper, the Brabants Dagblad, devoted an entire issue to the euthanasia of their son, an obese, darkly humorous, profoundly disturbed 38-year-old called Eelco. His euthanasia was one of the first high-profile cases involving a young person suffering from mental illness. Of the hundreds of reactions the newspaper received, most of them supportive, the one that made the biggest impression on the de Gooijers came from a woman whose daughter had gone out one day, taking the empty bottles to the store, and walked in front of a train. “She envied us,” Monique told me as I sat with her and Bert in their front room, “because she didn’t know why her daughter had done it. She said: ‘You were able to ask Eelco every question you had. I have only questions.’”
Privately, even surreptitiously undertaken, suicide leaves behind shattered lives. Even when it goes according to plan, someone finds a body. That openly discussed euthanasia can cushion or even obviate much of this hurt is something I hadn’t really considered before meeting the de Gooijers. Nor had I fully savored the irony that suicide, with its high risk of failure and collateral damage, was illegal across
Europe until a few decades ago, while euthanasia, with its apparently more benign – at least, more manageable – consequences, remains illegal in most countries.
Whatever the act of killing a physically healthy young man tells us about Dutch views of human well being, the demise of Eelco de Gooijer didn’t traumatize a train driver or a weekender fishing in a canal. Eelco was euthanized only after long thought and discussions with his family. He enjoyed a good laugh with the undertaker who had come to take his measurements for a super-size coffin. He was able to say farewell to everyone who loved him, and he died, as Monique and Bert assured me, at peace. There might be a word for this kind of suicide, the kind that is acceptable to all parties. Call it consensual.
“You try to make your child happy,” Monique said in her matter-of-fact way, “but Eelco wasn’t happy in life. He wanted to stop suffering, and death was the only way.” Eelco came of age just as euthanasia was being legalized. After years of being examined by psychiatrists who made multiple diagnoses and prescribed a variety of ineffective remedies, he began pestering the doctors of Tilburg to end his life.
Euthanasia is counted as a basic health service, covered by the monthly premium that every citizen pays to his or her insurance company. But doctors are within their rights not to carry it out. Unique among medical procedures, a successful euthanasia isn’t something you can assess with your patient after the event. A small minority of doctors refuse to perform it for this reason, and others because of religious qualms. Some simply cannot get their heads around the idea that they must kill people they came into medicine in order to save.
Those who demur on principle are a small proportion of the profession, perhaps less than 8%, according to the end-of-life specialist Agnes van der Heide. The reason why there is no uniformity of response to requests for euthanasia is that the doctor’s personal views – on what constitutes “unbearable suffering”, for instance – often weigh decisively. As the most solemn and consequential intervention a Dutch physician can be asked to make, and this in a profession that aims to standardize responses to all eventualities, the decision to kill is oddly contingent on a single, mercurial human conscience.
A category of euthanasia request that Dutch doctors commonly reject is that of a mentally ill person whose desire to die could be interpreted as a symptom of a treatable psychiatric disease – Eelco de Gooijer, in other words. Eelco was turned down by two doctors in Tilburg; one of them balked at doing the deed because she was pregnant. In desperation, Eelco turned to the Levenseindekliniek. With its ideological commitment to euthanasia and cadre of specialist doctors, it has done much to help widen the scope of the practice, and one of its teams ended Eelco’s misery on 23 November 2016. A second team from the same clinic killed another psychologically disturbed youngster,
Aurelia Brouwers, early last year.
Ideally euthanasia is a structure with three struts: patient, doctor and the patient’s loved ones. In the case of Eelco de Gooijer, the struts were sturdy and aligned. Eelco’s death was accomplished with compassion, circumspection and scrupulous regard for the feelings of all concerned. It’s little wonder that the Dutch Voluntary Euthanasia Society, or NVVE, vaunts it as an example of euthanasia at its best.
After leaving the de Gooijers, I drove northwards, bisecting hectares of plant nurseries, skirting Tesla’s European factory, to a conference organized by the NVVE. Apart from being the parent organization of the Levenseindekliek, the NVVE, with its membership of 170,000 (bigger than any Dutch political party) and rolling program of public meetings, is one of the most powerful interest groups in the Netherlands. The conference that day was aimed at tackling psychiatrists’ well known opposition to euthanasia for psychiatric cases – in effect, trying to break down the considerable opposition that remains among psychiatrists to euthanizing disturbed youngsters like Eelco and Aurelia.
The conference center on the outskirts of Driebergen stood amid tall conifers and beehives. I was offered a beaker of curried pumpkin soup while the session that was underway when I arrived – titled “Guidelines for terminating life on the request of a patient with a psychiatric disorder” – came to an orderly close in the lecture hall. Precisely three minutes behind schedule, the Dutch planned-death establishment debouched for refreshments.
I had met my first NVVE member quite by chance in Amsterdam. After watching her mother die incontinent and addled, this woman of around 70 signed an advance directive requesting euthanasia should she get dementia or lose control of her bowels. These conditions currently dominate the euthanasia debate, because so many people in their 60s and 70s want an opt-out from suffering they have observed in their parents. When I mentioned to the woman in Amsterdam the reluctance of many doctors to euthanize someone who isn’t mentally competent, she replied, bristling: “No doctor has the right to decide when my life should end.”
At any meeting organized by the NVVE, you will look in vain for poor people, pious Christians or members of the Netherlands’ sizeable Muslim minority. Borne along by the ultra-rational spirit of Dutch libertarianism (the spirit that made the Netherlands a pioneer in reforming laws on drugs, sex and pornography), the Dutch euthanasia scene also exudes a strong whiff of upper-middle class entitlement.
Over coffee I was introduced to Steven Pleiter, the director of the Levenseindekliniek. We went outside and basked in the early October sun as he described the “shift in mindset” he is trying to achieve. Choosing his words with care, Pleiter said he hoped that in future doctors will feel more confident accommodating demands for “the most complex varieties of euthanasia, like psychiatric illnesses and dementia” – not through a change in the law, he added, but through a kind of “acceptance … that grows and grows over the years”. When I asked him if he understood the scruples of those doctors who refuse to perform euthanasia because they entered their profession in order to save lives, he replied: “If the situation is unbearable and there is no prospect of improvement, and euthanasia is an option, it would be almost unethical [of a doctor] not to help that person.”
After the Levenseindekliniek was founded in 2012, Pleiter sat down with the insurance companies to work out what they would pay the clinic for each euthanasia procedure its doctors perform. The current figure is €3,000, payable to the clinic even if the applicant pulls out at the last minute. I suggested to Pleiter that the insurance companies must prefer to pay a one-off fee for euthanizing someone to spending a vast sum in order to keep that person, needy and unproductive, alive in a nursing home.
Pleiter’s pained expression suggested that I had introduced a note of cynicism into a discussion that should be conducted on a more elevated plane. “There’s not an atom in my body that is in sympathy with what you are describing,” he replied. “This isn’t about money … it’s about empathy, ethics, compassion.” And he restated the credo that animates right-to-die movements everywhere: ‘I strongly believe there is no need for suffering.’
That not all planned deaths correspond to the experiences of Bert Keizer or the de Gooijer family is something one can easily forget amid the generally positive aura that surrounds euthanasia. The more I learned about it, the more it seemed that euthanasia, while assigning commendable value to the end of life, might simultaneously cheapen life itself. Another factor I hadn’t appreciated was the possibility of collateral damage. In an event as delicately contractual as euthanasia, there are different varieties of suffering.
Back in the days when euthanasia was illegal but tolerated, the euthanizing doctor was obliged to consult the relatives of the person who had asked to die. Due to qualms over personal autonomy and patient-doctor confidentiality – and an entirely proper concern to protect vulnerable people from unscrupulous relatives – this obligation didn’t make it into the 2002 law that legalized euthanasia.
This legal nicety would become painfully significant to a middle-aged motorcycle salesman from Zwolle called Marc Veld. In the spring of last year, he began to suspect that his mother, Marijke, was planning to be euthanized, but he never got the opportunity to explain to her doctor why, in his view, her suffering was neither unbearable nor impossible to alleviate. On 9 June, the doctor phoned him and said: “I’m sorry, your mother passed away half an hour ago.”
Marc showed me a picture he had taken of Marijke in her coffin, her white hair carefully brushed and her skin glowing with the smooth, even foundation of the mortuary beautician. Between her hands was a letter Marc had put there and would be buried with her – a letter detailing his unhappiness, resentment and guilt.
There is little doubt that Marijke spent much of her 76 years in torment, beginning with her infancy in a Japanese concentration camp after the invasion of the Dutch East Indies, in 1941, and recurring during her unhappy adulthood in the Netherlands. But Dutch doctors don’t euthanize people because of depression – even if the more extreme advocates of the right to die think they should. As a result, it isn’t uncommon for depressives or lonely people to emphasize a physical ailment in order to get their euthanasia request approved. During his time on the review board, Theo Boer came across several cases in which the “death wish preceded the physical illness … some patients are happy to be able to ask for euthanasia on the basis of a physical reason, while the real reason is deeper”.
In Marijke’s case, the physical reason was a terminal lung disease, which, Marc told me, she both exacerbated and exaggerated. She did this by cancelling physiotherapy sessions that might have slowed its progress, bombarding her GP with complaints about shortness of breath and slumping “like a sack of potatoes” whenever he visited. “To be sure of being euthanized,” Marc said drily, “you need above all to take acting lessons.”
What torments him today is that his mother died while there was hope that her illness could be slowed. “If she had cancer and was feeling pain and it was the last three months of her life, I would have been happy for her to have euthanasia. But she could have lived at least a few more years.”
Defenders of personal autonomy would say that Marc had no business interfering in his mother’s death, but beneath his anger lies the inconsolable sadness of a son who blames himself for not doing more. Marijke’s euthanasia was carried out according to the law, and will raise no alarms in the review board. It was also carried out without regard to her relatedness to other human beings.
For all the safeguards that have been put in place against the manipulation of applicants for euthanasia, in cases where patients do include relatives in their decision-making, it can never be entirely foreclosed, as I discovered in a GP’s surgery in Wallonia, the French-speaking part of
Belgium.
The GP in question – we’ll call her Marie-Louise – is a self-confessed idealist who sees it as her mission to “care, care, care”. In 2017, one of her patients, a man in late middle-age, was diagnosed with dementia and signed a directive asking for euthanasia when his condition worsened. As his mind faltered, however, so did his resolve – which did not please his wife, who became an evangelist for her husband’s death. “He must have changed his mind 20 times,” Marie-Louise said. “I saw the pressure she was applying.”
In order to illustrate one of the woman’s outbursts, Marie-Louise rose from her desk, walked over to the filing cabinet and, adopting the persona of the infuriated wife, slammed down her fist, exclaiming, “If only he had the courage! Coward!”
Most medical ethicists would approve of Marie-Louise’s refusal to euthanize a patient who had been pressured. By the time she went away on holiday last summer, she believed she had won from her patient an undertaking not to press for euthanasia. But she had not reckoned with her own colleague in the practice, a doctor who takes a favorable line towards euthanasia, and when Marie-Louise returned from holidays she found out that this colleague had euthanized her patient.
When I visited Marie-Louise several months after the event, she remained bewildered by what had happened. As with Marc, guilt was a factor; if she hadn’t gone away, would her patient still be alive? Now she was making plans to leave the practice, but hadn’t yet made an announcement for fear of unsettling her other patients. “How can I stay here?” she said. “I am a doctor and yet I can’t guarantee the safety of my most vulnerable patients.”
While for many people whose loved ones have been euthanized, the procedure can be satisfactory and even inspiring, in others it has caused hurt and inner conflict. Bert Keizer rightly observes that suicide leaves scars on friends and family that may never heal. But suicide is an individual act, self-motivated and self-administered, and its force field is contained. Euthanasia, by contrast, is the product of society. When it goes wrong, it goes wrong for everyone.
Even as law and culture make euthanasia seem more normal, it remains among the most unfamiliar acts a society can condone. It isn’t enough that the legal niceties be observed; there needs to be agreement among the interested parties on why it is taking place, and to what end. Without consensus on these basic motivations, euthanasia won’t be an occasion for empathy, ethics or compassion, but a bludgeon swinging through people’s lives, whose handiwork cannot be undone.
Two years ago the Netherlands’ health and justice ministers issued a joint proposal for a “completed life” pill that would give anyone over 70 years of age the right to receive a lethal poison, cutting the doctor out of the equation completely. In the event, the fragmented nature of Dutch coalition politics stopped the proposal in its tracks, but doctors and end-of-life specialists I spoke to expect legislation to introduce such a completed-life bill to come before parliament in due course.
Assuming it could be properly safeguarded (a big assumption), the completed-life pill would not necessarily displease many doctors I spoke to; it would allow them to get back to saving lives. But while some applicants for euthanasia are furious with doctors who turn them down, in practice people are unwilling to take their own lives. Rather than drink the poison or open the drip, 95% of applicants for active life termination in the Netherlands ask a doctor to kill them. In a society that vaunts its rejection of established figures of authority, when it comes to death, everyone asks for Mummy.
Even those who have grave worries about the slippery slope concede that consensual euthanasia for terminal illness can be a beautiful thing, and that the principle of death at a time of one’s choosing can fit into a framework of care. The question for any country contemplating euthanasia legislation is whether the practice must inevitably expand – in which case, as Agnes van der Heide recognizes, death will eventually “get a different meaning, be appreciated differently”. In the Netherlands many people would argue that – for all the current wobbles – that process is now irreversible.
Christopher de Bellaigue will chair a discussion on euthanasia at the Dutch Center in London EC2 on 23 Wednesday Jan at 7pm. See dutchcentre.com. This article was supported by funding from the Pulitzer Center for Crisis Reporting
