Written by Dominic Wilkinson, University of Oxford
Ernst Kuipers, the Dutch health minister, recently announced that regulations were being modified to allow doctors to actively end the lives of children aged one to 12 years who were terminally ill and suffering unbearably.
Previously, assisted dying was an option in the Netherlands in rare cases in younger children (under one year) and in some older teenagers who requested voluntary euthanasia. Until now, Belgium was the only country in the world to allow assisted dying in children under 12.
Under the proposal, it will remain against the law for doctors in the Netherlands to actively end the life of a child under the age of 12. However, a force majeure clause gives prosecutors the discretion not to prosecute in exceptional circumstances.
In 2005, Dutch doctors and legal experts published guidelines (the so-called “Groningen protocol”) elaborating when these exceptional circumstances would apply for infants under the age of one year. That included certainty about diagnosis and prognosis, “hopeless and unbearable suffering”, the support of both parents and appropriateness confirmed by an independent doctor.
The new regulations would allow the same principles to apply to children between one and 12 years of age.
What type of cases would this apply to?
In a study commissioned by the Dutch health ministry and released in 2019, researchers investigated the deaths of a large number of children who had died four years earlier. They did not identify any cases where doctors had deliberately hastened death.
However, Dutch paediatricians and parents had reported that in a small number of cases, children and families were experiencing distressing suffering at the end of life despite being provided with palliative care.
That included, for example, children with untreatable brain tumours who developed relentless vomiting, screaming, and seizures in their dying phase. Or children with epilepsy resistant to all treatment with tens to hundreds of seizures a day.
The study recommended improvements in access to palliative care for children, as well as altering regulation to provide the option of assisted dying in these extreme cases.
It has been suggested that five to ten children a year might be eligible for this option in the Netherlands.
The Dutch proposal is different to the law in Belgium. In 2014, Belgium removed a lower age limit for accessing voluntary euthanasia.
This means that, in theory, Belgian children under the age of 12 years can request assisted dying in strictly limited circumstances, including that they have a terminal illness, have severe suffering that cannot be eased, can understand their circumstances, and their parents agree.
This would not apply to the children covered by the Dutch regulation who are too young or too unwell to make decisions for themselves. Since the Belgian law was passed, only four cases of assisted dying in minors (under the age of 18) have been reported.
Is this evidence of a slippery slope?
The expansion of assisted dying to children in the Netherlands will probably be viewed, by those who are opposed to assisted dying, as further evidence of the so-called “slippery slope”. This is the argument that allowing assisted dying in initially limited cases will lead to progressive liberalisation and to much more problematic cases.
The Groningen protocol for young infants was also claimed to be a clear example of the slippery slope. However, reports from the Netherlands suggest that rather than leading to an increase, there has been a significant reduction over time.
According to the Dutch health minister, only two cases in children under one year have been reported since 2007.
The important ethical question is what our society wants doctors to do when faced with the thankfully rare but heartbreaking situation of a child suffering severely at the end of their life.
Should doctors try sedating the child heavily until they are unconscious and wait for the inevitable end? Should doctors do the best they can, but accept that suffering is not always avoidable? Or should they take steps to hasten the child’s death?
In most countries, the last is not a lawful option even if both parents and doctors think that would be kindest for the child. However, in the Netherlands, it appears that this will be available as a last resort, once the new regulations have been approved. Hopefully, it will rarely be needed.
Dominic Wilkinson, Consultant Neonatologist and Professor of Ethics, University of Oxford
This article is republished from The Conversation under a Creative Commons license. Read the original article.
So. An expanded law on euthanasia? I was unaware of any such law, in the first place. But, of course, it would not have occurred to ME to consider such a law, a priori. Slippery slope? That is putting it mildly, seems to me. Progressive legislation is, or is not, subject to ethical review and analysis. Ethicists examine these issues, as they are charged with doing. Is this a more a question around morality, assuming it would be a moral act to arbitrarily take a life, with or without the consent of the owner of that life? I don’t know. It all feels a bit macabre to me. And, yes, I have ancestry—many generations removed. Ethics tries to keep us honest with ourselves and each other. It may not always succeed. Morality asks: Is this something your grandmother, assuming she was an upright citizen, would have countenanced or supported? I think it is more a sheet of ice, although I am no authority here—not am I charged with analysis of ethics. There is one thing I loathe about getting older: everything. However, I would not assent to being ‘put down’, like a cherished, aged, pet.
I left a follow-up here, moments ago. It got lost in cyberspace…
On second thought, maybe my view is just too conservative for this century? I had not thought so until now. There are many things changing and perhaps these ideas represent a new Enlightenment. I don’t think there are a lot of people who believe in miracles. In that sense, perhaps it is appropriate to relieve suffering in terminally ill adults and children. We are becoming more determined to define ethics and morality on our terms. Or maybe only on terms that make us more comfortable? I read this post again, carefully, just to see if I had missed any key points, or, moreover any points I initially had problems with. I ‘m just not totally convinced of altruistic motive in all this. I can hear background conversations among healthcare professionals everywhere. Why keep anyone alive when they are terminally ill and in unremitting agony? Why spend time on palliative care when there is no hope? Why spend time, energy and healthcare resources on deathbed cases when all that can be better expended on sick patients who will get well?
Believe me, I have struggled with this and I get it.
Thanks for this, Dom.
Are there any situations where terminal sedation to unconsciousness is technically impossible? I’d have thought not.
If not (and particularly if, as you say, the number of cases where euthanasia would be contemplated is very small), I’d have thought that the difficulty and expense of effecting terminal sedation would be very small prices to pay to keep in play the notion that, basically, it’s a bad thing for doctors to kill children. If that notion is lost or diluted, there are very widely and deeply repercussive consequences – not least in terms of the doctor-patient relationship.
May I parse the last comment? : “Are there any situations where terminal sedation…”. The rest of the comment is either redundant, superfluous or contradictory. Terminal sedation is referential to the euthanasia reserved for cherished, aged pets. What we elect to do with untreatably ill people falls upon our ethical, moral ideas and/or ideals, whatever those may be. The questions I posed in a previous comment are indicative. I tried not to equivocate. If my Dutch progenitors want to change their rules or views, sobeit. I do not live there. It would not matter if I did. Not do I have any trollish desire to berate or criticize other thinkers, here or anywhere else. That is the style of others in this and other forums. It is not mine. I only hope people think clearly about what they say, before they say it.
Four replies from Paul D. Van Pelt and not a single word of sense. Pontificating and rambling $5 dollar words while actually saying nothing of worth. God you must be an absolute bore to be around, it seeps through the screen in your redundant waffling.
Glad to be of service. Why not say something about the content of the post? An opinion, position, anything really. You need not be either right or wrong.
Most of the commenters here are in the same quandary. They do not know everything either.
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