The word control sums up the euthanasia debate. Patients want to control the end of their lives; society wants to control doctors who end lives. A book which omits either approach is a failure.
In Pursuit of a Dignified Life's End , an apology for the Belgian model of legal euthanasia, by Wim Distelmans, is a serious disappointment. Dr Distelmans, an oncologist, knows more about euthanasia than anyone else in Belgium, perhaps in the world. He is the country's leading practitioner of euthanasia, a man who is responsible for the deaths of hundreds, if not thousands, of patients , according to Der Spiegel. He is its leading publicist and has received numerous prizes and honours as a euthanasia champion. And he is the co-chairman of Belgium's Federal Evaluation and Control Commission for Euthanasia, which determines whether euthanasia procedures have been performed lawfully. Another right-to-die campaigner, Dr Marc Van Hoey , has scoffed that he is Belgium's "Pope of euthanasia".
Most of his brief book is concerned with alleviating pain at the end of life, or palliative care. Distelmans is clearly an expert in analysing and treating pain. He understands patients' need for personal care and adequate social services, their anguish as death approaches, and the grief of their loved ones. He says that "as a child I always wanted to be a 'do-gooder', and Albert Schweitzer was my absolute hero." Something of Distelmans' youthful altruism persists in his fierce attack on the medical profession's "therapeutic obstinacy", its tendency to focus on medicines and machines and to forget about patients.
In one sense, therefore, his aspirations for controlling the end of life are respectable:
"Not only should the end of the dying process be dignified, but the whole process of the illness. The quality of dying in our society is still in stark contrast to our quality of life. Moreover, being sick should not mean waiting for death but rather getting the most out of life. The pursuit of a dignified life's end includes both the pursuit of a dignified life and a dignified end."
But what about society's right to control Dr Distelmans and his colleagues? Does Belgium's law provide enough safeguards to ensure that the system is not being abused; that patients are not being euthanised under duress or without their consent; and that all euthanasia is being carried out lawfully?
Dr Distelmans claims to be a foe of old-fashioned medical paternalism, but like the curmudgeonly physicians of yesteryear he has little patience with his critics. A constant theme in the book is the malice of international media yelping at the heels of progressive humanitarians. "Only fundamentalists, pressure groups and sensation-seeking (foreign) media continue to show little or no respect for the final wishes of those in unbearable suffering," he comments.
Insulated from criticism, then, he states numerous times that there are no problems at all with Belgium's law. "Since its introduction it has become clear that the Euthanasia Law has not led to any abuse," he writes.
No abuse? None? Not one case?
In the 12 years since Belgium's law came into effect, after 8,000 cases of euthanasia, not one doctor has ever been charged with violating the law. This is simply not credible. The possible explanations are that Belgian doctors never make mistakes, that there are no rogue doctors, or that the commission rubberstamps the paperwork. Take your pick.
The one and only case came to light only a few days ago, when the control commission brought charges against Distelmans's critic, Dr Van Hoey, for having performed a euthanasia without asking a psychiatrist to tick a box on a form, as legally required.
Dr Distelmans' optimism about the system which he operates, publicises and controls is not warranted, even based on the information in his book.
First, he acknowledges that he does not have the facts about illegal deaths. He writes: "Thanks to the law, there has been a significant reduction (around 50 per cent) in the incidence of unrequested life-ending treatment (a practice that is very difficult to monitor)." In one sentence he declares that there is no abuse; in the following sentence that there are many cases of involuntary euthanasia. How many? He doesn't know. How could he? Even in Belgium, doctors who act unlawfully do not report their crimes.
Second, this contradiction is resolved by a breathtaking example of cognitive dissonance. Belgium's law defines euthanasia as "the intentional termination of a person's life, at his request, by a third party". Hence, involuntary euthanasia, for Dr Distelmans, is an oxymoron, a contradiction in terms. There can be no such thing, since Belgian euthanasia is, by definition, always voluntary. "Henceforth," he writes, "the historical and emotionally charged use of expressions such as euthanasia at the request of family, euthanasia of newborns, euthanasia for economic reasons, and euthanasia for dementia patients could no longer be used."
Dr Distelmans, in his campaign to rid the world of pain, does away with the pain of reasoning. Here is his Alice in Wonderland logic at work. He discusses palliative (or terminal) sedation, an end-of-life measure in which food and fluids are withdrawn and the patient rendered unconscious with sedatives so that if he does not die of the underlying condition, he will die of starvation.
Palliative sedation is often offered as an alternative to euthanasia … In some cases, the doctor has no choice but to take a unilateral decision; it is unthinkable that a doctor would not administer some form of pain relief to a demented patient who is crying out in pain from bedsores.
But this is not euthanasia, according to Dr Distelmans, because a doctor is not the direct agent of death and because it is involuntary.
His discussion of the situation becomes even more bizarre in the very next paragraph:
In 2013 Livia Anquinet, in her doctoral dissertation, reported that the incidence of deaths due to palliative sedation had roughly doubled since the introduction of the Belgian Euthanasia Law, from 8 per cent (eight thousand out of a hundred thousand) to 15 per cent (fifteen thousand). This disturbing increase is undoubtedly due to doctors being more empathetic to the suffering of terminal patients, but it may also be due to unapproved euthanasia requests.
Distelmans is the co-chairman of the body which guarantees citizens that their doctor is not the Belgian counterpart of the English physician and serial killer Harold Shipman . How could he both write this sentence and repeat metronomically that there is no abuse in Belgium? By his own admission there must be thousands of Belgians who have been killed by their doctors outside the law and often involuntarily.
Finally, it is astonishing that Dr Distelmans's book gives no account whatsoever how the control commission works. Quis custodiet ipsos custodes? Who will guard the guards themselves? He personally has been responsible for a large proportion of Belgium's euthanasia deaths. Yet he is the most powerful figure in regulating them. In any other country this would be regarded as grossly improper and an invitation to corruption. But instead of defending himself, Dr Distelmans lashes out at sensation-seeking international media.
Supporters of euthanasia promised Belgians emancipation from medical paternalism and "therapeutic obstinacy". But after reading Wim Distelmans' explanation of their law, it's apparent that Doctor still knows best. The only thing that has changed is that Doctor is carrying a syringe filled with a lethal drug.