The paradox of self-chosen death. The social debate on #euthanasie is increasingly about unbearable mental suffering, as with dementia and life fatigue. The question is whether you should be given the right to a good death in those cases. A lot of people think so, but a lot of doctors don't feel anything about it.

'It is accomplished, 'sighted Els Borst when in 2001, on Good Friday, she managed to pass the euthanasia law through the Chamber as Minister of Health. Since its introduction in 2002, euthanasia is no longer a criminal offence under certain strict conditions (see box). But, contrary to what Els Borst hoped at the time, it is still not 'accomplished' almost twenty years after the introduction of the law. Almost everyone in the Netherlands — on stringent believers after— does today agree that people suffering physically incurable and intolerable are entitled to euthanasia. The tricky thing is that the fundamental debate on the limits of euthanasia has continued to move after the introduction of the law. New groups of patients who see their suffering as unbearable and hopeless, writes Bert Keizer in Completed: new light on a self-chosen death (2018). Keizer is a philosopher, retired nurse doctor and now works at the #lifeinclinics.

In Completed, Keizer mainly outlines the dilemmas surrounding euthanasia in three groups:
elderly people with a pile of old age complaints;
people who demente;
people with a completed life. ;

For elderly people with a large pile of complaints, it's actually not that complicated. For example, they are a little deaf, occasionally lose pee and/or poop, are dizzy and therefore threaten to fall, are shortness of breath due to heart failure, slightly forgetful, partially blind due to retinal damage, or they can no longer wash or dress independently. If they can clearly express their euthanasia request themselves, the GP may grant it. And if the general practitioner has objections in principle, there are always doctors from, for example, the Levenseindekliniek who want to do it.

The difficult social debates are now about euthanasia among people who are dementia and in people who think they have a complete life: 'It has been beautiful this way. ' More about that later. First dementia. In medicine, the law of preservation of misery applies: if doctors have managed to reduce a certain disease, then people die from something else. Now that men no longer fall to death immediately after retirement with myocardial infarction and many cancers are more treatable, dementia is advaning as a public enemy number 1. The Netherlands now has over a quarter of a million patients with dementia. It is estimated that there will be over half a million. There is no treatment for dementia, although occasionally misleading reports of 'promising' medicines appear.

The Netherlands has 250,000 patients with dementia; by 2040 there are half a million

No one wants to demente. Gradually forget everything, get lost in your own home and your own mind, no longer recognize your children, partner and friends. No one wants to end her or his life in a closed ward in a nursing home, with a diaper in a wheelchair and a large bib to prevent drooling and spilling, and a plastic cover to protect your mattress from leakage at night.

A survey conducted by EenToday showed a few years ago that as many as 87 percent of the 33,000 respondents in dementia are in favour of euthanasia, if there is a written declaration of will. The problem is that most doctors do not want to. The same survey showed that 60 percent of general practitioners are against euthanasia in dementia.

The retired psychiatrist Boudewijn Chabot posted an open letter shortly after in 2017 in the Volkskrant: 'Never kill a defenceless person who doesn't realize it. ' The call was signed by 33 fellow doctors, including Bert Keizer. Both he and Chabot have played a pioneering role in the euthanasia debate, so if they are opposed to euthanasia in dementia in principle, there is reason to listen carefully to that objection: you as a doctor cannot kill someone who does not understand it anymore.

'Alzheimer's light'
With beginning dementia, euthanasia is still possible in principle. The patient has been diagnosed, knows that the disease is incurable, and is also very sure that she or he never wants to end completely demented. The patient, apart from tangled moments, is predominantly clear and can still decide independently. But dementia is like alcoholism: a characteristic feature of the disease is that it denies itself.

Family and friends often go along with it and whitewash the problems: “Just forgetfulness, a senior moment.” And as doctors used to hesitate to pronounce the word “cancer” aloud, now they are often reluctant to diagnose dementia. Then it says in the file that people have mild cognitive impairment or 'alzheimer light'. 'As if that doesn't turn Alzheimer's heavy, 'writes Keizer. People sometimes deteriorate quickly, sometimes slowly, until there comes a moment when someone is demented and thus incapacitated.

It's a gray area, where judgments quickly become very difficult. When is someone too far gone for euthanasia? In 2016 a big riot broke out after the documentary Levenseindekliniek. There, the dementia Hannie Goudriaan received a lethal injection in front of the camera. All she could do was put out phrases like, “I have to huppakee.” But that's what she said when she had fun at the rink, so what did that mean? “Murder with a million and a half witnesses, “tweeted Professor of Cognitive Neuroscience Victor Lamme after the broadcast. In an article in the Volkskrant, her doctors and husband later explained that Hannie had been dementia for eight years and had initially told very clearly that she wanted to die if she went too much backwards: 'She just didn't want to go on with an empty head. '

The discussion has continued since. Recently, a specialist in elderly medicine was acquitted who had granted euthanasia to a 74-year-old heavily demented woman in 2016. She had stated in a declaration of will that she never wanted to end up in a nursing home, but had ended up there anyway. Although she could no longer think or talk coherently, the doctor nevertheless granted euthanasia. The prosecution prosecuted the doctor for murder, but the court found that she had acted carefully. Because it is a very principled question, justice put “cassation in the interest of the law”. The Attorney General advised the Supreme Court in December to acquit the doctor. If it is pointless to ask a patient if she or he really has a death wish, “this medical-professional judgment should in principle be respected by the judge.”. The Supreme Court will give its ruling this spring.

Senseless indignation
Although the verdict and advice to the Supreme Court are good news for the doctor concerned, the enthusiasm in the medical world to participate in euthanasia in dementia has not increased.. Even though it may be legal, most doctors hold serious moral objections to killing people who are incapacitated. Euthanasia in dementia occurs rarely. In heavily demented people, it happened twice last year, out of a total of 6000 cases of euthanasia. In less advanced cases, it fluctuates around 200 per year, according to emeritus professor of philosophical ethics Paul van Tongeren in Weren die: about the autonomy of completed life (2018). It is clear that the discussion about the role of the doctor will not stop for the time being, says Van Tongeren: “Why should you submit to the doctor's judgment? Why should you be sick? Do people not have the right to decide for themselves what they want with regard to their own life and death? '

A declaration of will stating that you want to die if you are severe dement or that you never want to end up in a nursing home is not worth that much in practice. 'I didn't have to write that down for I've never met anyone who, after visiting a closed dements' ward in a nursing home, said: “Yes, I would like to end this way,” writes former nurse Keizer in Completed. 'Nevertheless, family members often say to the doctor in the nursing home in accusatory tone: 'If only you know that father did not want this! '' It's pointless indignation. The disagreement about what to do with people who write down that they want to be killed if they are severe dement has not yet been resolved.

What's a good time to order the doctor?

This is the problem that journalist Henk Blanken has been writing about since 2016, for De Correspondent. Whites have parkinson's and are at great risk of becoming dement: 'Who becomes dement has only one chance. As soon as the visit to the memory clinic confirms your worst fears, you need to walk into your GP and convince him that you'd rather die today than not remember tomorrow what was yesterday. You must present death years in which dementia could still have been mild, and life bearable, apart from the dehumane horror that may be awaited.” White people summarize the problem: “You have to die too early before it's too late.”

Confidence in fellow human beings
Whites has an original solution. If you are afraid that once severe dement, you will no longer get euthanasia because doctors do not want to make the decision, you can ask someone close to make that decision for you. That can be a friend or child, but more logical is the life partner. He knows you so well that it can determine what the time is to put an end to it.

Whiteken acknowledges that this is “extremely difficult” and that he would prefer to determine the moment himself, so he said in the newsletter of Coöperatie Laatste Wil last December: 'But if I do it myself, I have to get out too early and I don't want that.. I've been thinking a lot about the option of not wanting to. And then you come to the thought that it's not even so weird to ask a neighbor to help you. Especially if it only consists of choosing the moment. If, as a partner or caregiver, you have been caring for someone who is dementia for six years, you have already taken over so much of life and you already fall together with him. Then it should not be so difficult to take the final step. '

Whites despair and fear are palpable, and his solution is certainly creative, but the objections are obvious. He has a great faith in his fellow man. What if your counselor is in a hurry to get the inheritance? But even if you assume that most people are good, there are plenty of questions about. Can you make such a very heavy decision — whether or not to kill — with a neighbor? And how should the neighbor then determine the moment? People with, for example, parkinsondementia (which White people are afraid of) can experience significant fluctuations: from total confused to quite bright, from heartbroken to very cheerful. When is the time to order the doctor?

The bottom line is that White people want to delegate the decision to die because, as a starting dementia, he wants to have a few relatively good years. Bert Keizer therefore blames him cowardice. Whites think that's only half the truth: “I think you should not only ask, but also ask.. We have become so dependent on each other in this life that it is almost a duty to involve another in your end of life. And that runs counter to the idea of the “autonomous route” as a philosophical ideal. Liberal man, who doesn't want anything to do with anyone when he dies and pushes his own will at all costs.. I turn it on sharply now, but that's a different way of thinking than I have.”

Here Whites touch an essential point. The whole discussion of euthanasia is based on manufacturability. Modern Western science has brought us where we are today: autonomous citizens who expect to be eighty years old in good or at least reasonable health and who, after a feasible life, also have the right to a feasible death. But a good or timely death is not a right: no doctor is obliged to grant euthanasia.

Certainly not among people who do not suffer unbearably, but do find that they have 'a completed life'. That is a term that sounds chic and is often used, but where there are many questions to ask. For what 'completed' means exactly, ethicist Paul van Tongeren wonders in Weren die. A symphony can be complete or unfinished, but a life? 'A completed life' is usually a euphemism for 'being completely done with it'. Feelings of loneliness and meaninglessness play an important role. Interviews with people who think they have 'a completed life' show not so much a wish for death, but rather an aversion to the present life — where they see death as the only way out. Choosing the time of their death thus confirms their autonomy.


Protected against murder
But for that, paradoxically, they seek help from others. And because doctors are reluctant, people start looking for alternatives. Assistance with suicide is still punishable, despite D66's frantic attempts to legalize it. In 1991, the lawyer Huib Drion invented all his famous pill, which, incidentally, exists only in theory. Meanwhile there is the Cooperative Laatste Wil, which wants to provide members under strict conditions a powder with which people can commit self-euthanasia.

The Public Prosecutor's Office looks suspicious. That, on the one hand, is frustrating for the people who are sincerely trying to make a good, self-chosen death possible. On the other hand, it is understandable that the state is on top of it. There is a good reason that the monopoly on euthanasia lies with doctors and assisting suicide is punishable: citizens must be protected from murder. Behind all the lofty ideals is the raw reality that Drion's pill and the powder of the Cooperative are naturally heavily toxic. A good remedy should cause death in a few minutes, otherwise it will not become euthanasia, but a suffering. And how do you make sure that such a pill does not end up in that eternally barking dog of the back neighbors, as Emperor soberly asks himself.

The strange thing is that there have been good manuals for years to put an end to life in a responsible way.. Who knows a bit the way on the Internet can easily order the necessary resources. Yet it only happens in a little while. For the vast majority of people, that step is far too big. Despite all our ideals of autonomy, most people still look at doctors for a good death. And in many cases they will not offer that good death.

This creates a remarkable situation at the beginning of the twenty-first century. We have a life expectancy that our ancestors could only dream of. We can remain active independently in reasonable to good health until old age. At the same time, medical advances are saddling us with new ailments and new moral dilemmas that we have no solutions to. Paul van Tongeren calls it a contemporary tragedy: 'That we have to die once is perhaps the clearest limit to all our illusions about our self-determination. '

The main legal conditions for euthanasia:
- The euthanasia takes place at the explicit request of the patient.
- The request must have been made of his own free will and deliberate.
- The patient must suffer unbearably and hopeless.
- Doctor and patient should agree that there is no reasonable other solution.
- A second doctor must agree with the decision.
- Only doctors are allowed to perform euthanasia, in a careful manner.

Source: Paul van Tongeren, Weren die (2018).
From: Maarten! 2020-1



Drooling and spilling: Dementia