“Mummy, Mummy, I’m falling…”
Paediatric Euthanasia in the Netherlands: Rationalising the Unthinkable
Few things are as deeply engrained into the human psyche as the intuitive affection and protective sentiments one feels towards children. Children symbolise life. A blank slate. An entirely unexplored range of possibilities and talents. It is repulsive to consider how this could be any different. But reality is, children are as vulnerable to life as you and me, perhaps even more so. It is society’s duty to care for them, especially when they need it the most, so that they can continue to live in blissful ignorance for just a little longer.
The question of when and how an ill child’s suffering is to be relieved is such a topic. In the context of terminally ill minors, the question of physician assisted death continues to split commentators. PanDam spoke to Sedona de Keijzer, a 24 year old medical student holding a degree in Philosophy, Bioethics and Health. Sedona wrote both her theses about paediatric euthanasia, the process of actively ending a terminally ill child’s life. The Netherlands is famously one of the few countries in the world allowing their citizens to end their life by choice. In the paediatric context, however, things are still ambiguous:
“The Dutch Euthanasia Act applies to patients aged twelve and older. The Groningen Protocol applies to new-borns younger than one. For all children in between one and twelve, there is no possibility for euthanasia or actively hastening death through a medical substance. I specifically say through a medical substance because parents sometimes choose to stop feeding their child when they find the situation for their child unbearable and hopeless. This is the only legal option for parents to hasten their child’s death.” Sedona tells us: “A minor group of parents, whose child is very, very ill and will not get better but only sicker, considers this. You can imagine that this is very burdensome for parents to have to do, and perhaps even inhumane knowing that we have the medical-technical possibility to hasten death a different, less burdensome, and quicker way.”
What Sedona is already hinting at here is the fact that any end-of-life discussion is further complicated by the variety of options available. You see, Euthanasia describes a very specific case in which the patient's life is actively ended. This can take a variety of forms. Either the patient is provided with the tools necessary, or a doctor performs the act herself. In either way, the doctor is a vital part, but the request must come from the patient herself. This stands in contrast to measures aiming at actively hastening death, which do not require the patient's consent. This applies to the Groningen protocol, which is a Dutch legislation allowing the hastening of death for new-born children until the age of one year if:
1. The suffering is unbearable and a chance for improvement is non-existent
2. The parents are in agreement
3. Medical consultation has taken place
4. The termination procedure is in accordance with medical standards
Only if these conditions are met will the attending physician be exempted from being charged with murder since the active ending of a life is and remains a criminal act.
Currently, terminally ill patients of any age are usually provided with palliative care when their condition reaches a stage where their suffering becomes unbearable and Euthanasia is not an option, due to personal convictions or, in the case of minors, it not being allowed. Palliative care, which might include palliative sedation, is often portrayed as a sufficient alternative to Euthanasia, but there exists a vital difference:
“Euthanasia and palliative care are often compared. Palliative care is care designed to improve the quality of life of very ill patients and their families. It focusses on relieving symptoms and distress that come from the illness on a larger scale than just physical. The social, psychological, and spiritual domain are all part of palliative care. […] Palliative sedation is not meant to hasten the patient’s death. People often think it is. Palliative sedation is when you give a patient sedative medication which makes them sleep most of, or all, the time. The terminally ill patient’s symptoms are so burdensome that lowering their consciousness will be best to relieve the pain and suffering. In order to start palliative sedation, a patient’s life expectancy can’t be more than two weeks. For euthanasia there is no such maximum life expectancy.”
Therefore, palliative care (with the option of palliative sedation) is merely a way to make a patients last days more bearable by providing her with the medical, physical and psychological assistance required.
Taking Sedona's elaboration into account, deliberating which solution is best suitable for children between one and twelve years old becomes even more daunting. Is it necessary to actively end the life of a terminally ill minor, or is palliative care enough? Should the decision lie with the patient? The Parents? The medical team? The child herself? In the case of adults, proponents of Euthanasia usually advance arguments along the lines of agency and fundamental right to self-control. After all, it seems like an adult should be capable of deciding when they have lived long enough, or if their future is still appealing. But a child below the age of 12 has not even begun to grasp the full extent of the world, let alone ask herself what she wants from it.
What cannot, however, be denied is the fact that life does not exempt us from such decisions. Children do end up in hospitals with cancer or other life threatening conditions before their life has even begun. These dilemmas cannot be ignored or simply observed. Decisions have to be made. Consider the following cases taken from a 2017 study entitled Physician‐assisted dying for children is conceivable for most Dutch paediatricians, irrespective of the patient's age or competence to decide:
One paediatrician interviewed described a case in which a child, aged between four and six, was suffering severely from the aftermath of his acute illness: “You know, he had got through the acute phase of his illness, but he was so incredibly badly damaged that the request came from the parents and also from a lot of the other staff involved in treating him – orthopaedic surgery was involved, plastic surgery was involved, a neurologist, a paediatrician – and really all those groups were saying we shouldn’t let this happen, it wouldn’t be a good thing at all to keep this boy alive.”
Although the child was incapable of requesting PAD (Physician assisted dying) himself, the paediatrician became convinced PAD was the right thing to do, after careful deliberation with his colleagues.
"It’s a request from everyone. It all trickles in over one or two days, and you’re thinking too: what’s the point of this? Of everything that you’re doing." Although it was a team decision to terminate the child’s life, the paediatrician felt the sole responsibility: "It is something you do alone, but decide as a team."
Another paediatrician did not grant a request for PAD made by the parents of a patient aged between one and three with incurable cancer, who was suffering severely despite palliative care. Looking back, the paediatrician doubted this decision.
She described how the parents were desperate to stop their child’s suffering and felt abandoned when they learned that PAD was not an option. ‘And that boy had a very strange symptom, right at the end, he suffered from vertigo. He lay in bed and all he said was ‘Mummy, Mummy, I’m falling....’
You really end up with a kind of emotional exhaustion (in the parents); they really had no faith anymore in the course of things. Perhaps not so much in the doctor, but in the regulations in the Netherlands, which they don’t agree with. So a kind of panic develops: we can’t help our child.
This mother explained it very well.... She said: ‘I had to decide whether he should undergo this treatment, and that one and that one and that one, but the end result is that my child won’t survive. But I was allowed to take all those decisions, even when you told me there was only a really small chance (of cure), less than 5%. You’re allowed to make all those choices. But then when there is a 100% chance that my child will die, I’m no longer allowed to stand up for him; I have to accept that my child will suffer.”
Belgium set a milestone in the debate surrounding Paediatric Euthanasia by abolishing age restrictions in 2014, thereby de facto legalising it. In the case of minors, the application is limited to cases of imminent death and physical, not mental, suffering. It requires the consent of both parents or legal representatives, and healthcare professionals. Most importantly, however, the law states that an evaluation of the capacity of discernment of a child must be conducted by a psychiatrist. A great emphasis is, hence, placed on determining to which extend a child is able to grasp the situation, and whether or not they have some understanding of their condition. Studies have shown that this is an important factor for medical professionals when determining whether or not Euthanasia in the paediatric context in question is permissible.
The novelty about this is constituted by the fact that age boundaries are abolished and decisions can be made on a case by case basis, with the child taking an active part in the process. Importantly, for Euthanasia to be an option, the child has to be responsive. If the childs condition is so severe that it is incapable of voicing any opinion, measures of hastening death or palliative care are the only legal options. Sedona partially agrees with this:
“The fact that they eliminated a strict age boundary seems favourable in my opinion. They now assess the cases individually. They do have additional conditions for minors as opposed to adults wanting euthanasia, which seems fair keeping in mind that euthanasia for children is complicated by different factors. If all the Belgium conditions should be included in a possible future Dutch amendment/regulation is something that would still have to be researched.
My study results strongly point in the direction that an individual assessment per child is better than a strict age limit set at the age of 12, because some children younger than 12 may have the capacity to make such difficult decisions. The most difficult task is to design an assessment procedure. What should be assessed and by whom? Should the whole medical team be involved in decision-making? How much say do the parents have? Is it even ethical to go against the parent’s will? What if the parents do not agree with each other? Should the children and their amount of suffering be decisive? Should there be a second party to also assess the cases? As you can see there are many questions that have to be discussed thoroughly before a sufficient regulation can be made, but this seems possible. Many of the experts in my study already agreed on many points of discussion.”
Critiques of Paediatric Euthanasia often point to societal effects. In what is called the slippery slope argument, they fear the erosion of societal and medical norms, should Euthanasia become legal, both in the adult and paediatric context. Death is a taboo in our society – something that is duly avoided in our thoughts and conversations. The fear is that if this changes, somehow the overall obligation to fight for a patient’s life is altered, and actively causing death is perceived as a painless and permissible alternative.
“I’m not a big fan of the slippery slope argument. I just don’t believe societal norms will actually slide down this slope towards unethical practices. This didn’t happened when adult euthanasia was regulated in 2002, and I don’t believe it will happen now. It is still a guess of course, we simply do not know what will happen in the future, we never really do. Having said that, I do believe that this should not stop us from evolving and improving the law if we see there are flaws. It should only make us more aware of how important it is to have a solid regulation that is well thought through and analysed after its implementation.”
And the Dutch government is seemingly in agreement with her. In October 2020, Hugo de Jong (Health Minister at the time) – against criticism from the conservative Christian Parties – announced plans to alter the Dutch euthanasia laws, as to include minors between one and twelve. This would mean parental agreement remains a necessary condition, as well as “unbearable and endless suffering,” and an evaluation by the medical team and psychologists. The future of this legislation is however unclear, as the current state of Dutch politics and the ongoing Covid-19 pandemic make a quick decision unlikely.
Sedona is however sceptical about the short-term practical implementation of such a legislature:
“I think this was a bit ambitious. There is so much that has to be taken into consideration regarding this regulation that has not yet been thoroughly studied. I think they will need more time, unfortunately. I do however feel positive that a new regulation will eventually be accepted and implemented, as the government does see the necessity of this issue now.”