‘Death of a child is sometimes lesser evil’ - Kids’ euthanasia law author

SS:But I’m just wondering if you had any personal experience yourself, how many cases have you personally come across, where children have asked doctors to help them die, and how many parents have agreed to that?

PM: Oh, you know, it is always difficult to be able to evaluate the number of cases... I will tell you something quite specific. If in your life, especially if you are a physician, you are called to take care even of one of these cases, only one of these people, whether an adult or a minor, you are confronted with this situation and you quickly realize the need to find solutions and solve this issue of unbearable pain in case of incurable diseases. And so, the number is not the most important element. What matters is that there are children, teenagers who suffer from incurable diseases and for whom it is necessary to find a humane solution.

SS:It’s pure coincidence, but I am a journalist, I’m 35, but I also happen to be a board member of Moscow hospice – so, people that I worked with very tightly, they are actually confronted with terminally ill kids every day; kids, who die every day. When I talked to them, about euthanasia, they tell me that they yet have to come across a child who wishes to die, because that hasn’t happened yet, in our case.

PM: Quite frankly, there are such cases. Very fortunately, it is not the same person who is facing this type of situation every time, very fortunately it is not the same families. But I can tell you that pediatricians tell us that this type of situation exists, that unbearable suffering exists. Then is the number of cases that arise an extremely important number? The answer is no, very fortunately, the answer is no! But there are cases and it is necessary to respond to them. This is the reality. And you know, in 2002, when the law permitting euthanasia for adults was passed, we have heard arguments saying that we did not care enough about the patients, saying that’s the reason we propose this type of solution.

As for me, I can say that we do this because we truly care. We are putting this amendment through parliament to allow a solution, which is both euthanasia and palliative care, available for both adults and children. The caregivers and doctors who continue to tell us that this choice is needed, they want to support people at the end, make sure pain is gone in the end.

SS:Have you had a situation where parents ask for their children to be killed through euthanasia?

PM: Not with parents, not with my immediate circle. But I want to remind you again, that I am a doctor, and as doctors we can be confronted with situations that are highly different. It isn't because we find ourselves in a situation similar to the experience of someone emotionally close to us. It is not because we find ourselves in this kind of situation that we take initiative. We take this initiative because we want to fix the overall situation, and that is what is most important.

SS:But why I insist to find out your personal opinion and experiences is because this is a very personal, very emotional law, and it’s a law that for many crosses ethics or morals. I don’t know if you have any children, but if you had any children – would you allow them to decide on matters of life or death?

PM: I can answer you, in any case, that if, God forbid, I had a child who’d end up in this type of situation… I want to point out that by this type of situation I mean a child, a teenager whose suffering is related to an incurable disease, and who will die in the near future. If such a child asked me to put an end to his or her suffering, I would respond positively. And I believe that the entire population, in Belgium, when asked to answer a survey posing the same question, also replied in an overwhelmingly positive manner. I want to repeat that it isn’t the fact that we want to end the suffering of a child, a teenager which is outrageous. It’s the suffering itself that is outrageous. What is outrageous is that children are suffering, children are dying.

What is outrageous is that there are children who are suffering from cancer. What we are doing is precisely preventing this scandal, and thus preventing the suffering of these children and teenagers.

SS:But we are still talking in general terms. Take us through an average case which ends in someone being euthanized. What are they suffering from, how long does the decision take?

PM: I will give you an example. A child is suffering from a cancer which particularly affects children. I don’t want to give an exact diagnosis, but we know about these cancers affecting children: leukemia, or kidney cancers, for example. We provide them with chemotherapy; we provide them a second chemotherapy, a third one. There comes a time for such patients, including for example the sick, young people with brain tumors, there comes a time where we can no longer ease the suffering and there is no hope for a cure. We know that death will occur, and it’s coming soon. A number of these cases exist, where under these conditions, these children turn out to be more mature than many adults. Precisely because they are facing disease, precisely because these children are about to die.

SS:Then, since you say that there are not so many cases, why make it into a law? Why not just deal with it on a case-by-case basis? Because at the point where it becomes a law, you know very well that it leaves a lot of room for mistakes, and abuses, because not all doctors are so honest and not all doctors are so respective of their profession. In all countries, it is the same.

PM: Listen, quite frankly, quite frankly, I do not know who you are talking about. There is a law in Belgium that has existed for ten years. We made a law that makes it possible for a doctor to make the last humane gesture for a patient who is suffering. At the same time, we established an evaluation commission to which all euthanasia cases should be reported. For ten years, there has been a regular report made by this commission. Never has this commission found abuse. That is an important element. And then, you know, those who talk about abuse, I think that they have rarely faced this type of situation. We know what it is like, for a doctor, or for a caregiver, or for the families, to take into account the requests that are being made by patients and relatives in case of an incurable disease, to be able to hear them out and to respond to them positively…

When we know what it means, in terms of patient support, the gesture that is the gesture of euthanasia, I think that we finally realize that abuse cannot exist. Because the burden that is, I would say, the emotional, empathetic burden linked to this gesture, is extremely important. And I believe that those who speak of abuse actually are those who, for their reasons, are obviously opposed to euthanasia. I want to recall that the laws in Belgium, in Holland, in Luxembourg, these laws open an area of freedom, put in place guarantees to prevent abuse, but do not force anyone to make the gesture if they do not want to. I still believe, that when we talk about these patients, adults or children or teenagers, if these patients request euthanasia, it is a very humane gesture to carry out their request.

SS:So, then Mr. Mahoux, just to be precise, there is no age restriction in this law.

PM: There are restrictions that are not connected to age, but tied to the understanding that the child or the teenager may have of the situation. Therefore, we kept as a criteria the capacity for discernment, that is, we have to ask a psychologist, a psychiatrist who is not connected to the situation, to assess if the request that is made by this minor, I repeat, who is suffering from an incurable disease after treatments that have become unnecessary - if that request is made with full understanding. That is the rule. I repeat, we found that the maturity of the children who are suffering, the maturity of children facing disease, facing death, is greater than that of many adults, so...

SS:So it is really the psychologists that decide if the child is in a condition to make a life decision or not. Is that it?

PM: Exactly, that is how it is written in the law. It is a person from the outside, a psychologist, psychiatrist, who determines if the minor has an understanding of the situation, if the minor is making a request of which he or she is fully aware.

SS:So, this minor can be four years old as well as sixteen years old; do I understand that right?

PM: It is hard, obviously, to understand that a minor who is four years old is able to make a request of this nature being perfectly aware of what he is asking. It is not the role of the legislator in any case to determine how these things could be evaluated by specialists. We have effective assurance that these specialists are able to determine if the child has this capacity for understanding.

SS:But you, as a doctor, what do you think, at what age does a child develop the capacity to make such a serious decision?

PM: You do understand, that as a legislator, I have proposed that there be a report on the state of awareness of a child, because each case is unique. And so, if I had thought there was a right age for this, I would have suggested that we set it. You know, we consulted with a bunch of specialists, many of whom are both doctors and psychologists, and we have consulted lawyers. They all told us that we should not introduce an age provision but instead put in this criterion of awareness. They suggested this because they consider that each case is individual, so it is impossible to determine an age limit. So I can answer your question that the law kept the condition of awareness, the ability of discernment.

SS:You know, because there are still some people who are, nevertheless, opposed to this law, and they say that minors do not have the right to vote, do not have the right to drink, do not have the right to marry, so then if they are suffering from an incurable disease, does it really give them the competence to make an adult decision?

PM: Madame, you are asking me if I know if a child is aware and capable of understanding his or her situation. I would like to remind you that we are not in the child’s shoes, we are not suffering from an incurable disease which causes pain, for which multiple treatments were given that have led to nothing. We have to remember this. You know, it is easy to have a definite answer, to make a decision like that, in the place of someone else, when we are not in the same situation. We do not make decisions for those for whom we care. Those who are working closely with patients, those who know, they can actually, according to the law, decide in their heart and conscience to respond to a formal request positively. I think that's the right way to do it. It is not the legislator who will normally be at the bedside of children or adults who are suffering. It is the medical personnel who will have to solve the problem but, at least, the law allows them to respond humanely to those requests. This is about the possibility for everyone to choose at some point not to accept this suffering and to say at a certain point ‘this is enough’ And consider that one can finally ask to die, so that the suffering stops. It is, in the end, a freedom, a freedom that is related to human rights and humans, in general. For centuries we valued pain. People who were condemned to death, before they’d be executed for, let’s say, offensive opinions – they weren’t just executed, but put to death with pain and horrible suffering. And well, we, we follow a process that is exactly the opposite approach. I am a strong supporter of the abolition of the death penalty. In all the countries of the world, I am opposed everywhere and always to all forms of torture. I am opposed to the value of pain. I think that pain is pointless, except when it is an alarm signal, a signal of diagnosis. But for the rest, the approach fits into a battle of individual vs. collective, a discussion of humanity against precisely this vision of a society. A society that would condemn to death, which would execute, which values the pain. Our approach is the next stage, when we say that one can avoid the inevitability of this pain, when it is unbearable - well, it is the duty of humanity to do so and to allow one to do so.

SS:And what do you do with the option of palliative care, for example? Because everyone who works in “palliative care” will tell you that, you know, the only time that a child or an adult would ask you for euthanasia is if you have not provided a palliative net, otherwise they would never ask you to kill them.

PM: Well, I will tell you this: in 2002, when there was a vote on the law for the adults, I tabled legislation, two pieces of legislation. One of which involved the implementation of palliative care, and the other concerning the possibility of patients benefiting from euthanasia. And so my belief, shared by the majority of the population, and the majority of the caregivers in general, at least in our country, to consider the implementation of palliative care. But that is not because we have implemented palliative care that automatically, first, this palliative care, eliminates any request for euthanasia. One does not exclude the other. And then, there’s the freedom of everyone to consider that at a certain point, palliative care isn’t enough. I really want to clarify that. You know, as a doctor and caregiver, firstly, for all patients who come to consult, what is the primary approach?

The approach is to treat them. And to try to heal them. That is the primary approach. The second approach, if that is not possible, is to recognize, at some point, that this is not possible and that the disease is too strong. And if we cannot treat the disease, if the patient must die, we must enable them to die in the most dignified way possible. And to die in the most dignified way possible, it can be done either through palliative care or through a request for euthanasia. Even the best palliative care does not eliminate requests for euthanasia, in any case it is a responsibility, a choice which is left with each patient. That is what’s important, the freedom that the ethical laws allow in our society. A positive response based on individual choices.

SS:Since we are speaking about ethics, have you already had a case where the doctor refuses to use euthanasia with a client?

PM: But of course. You know, there is no element of coercion in the laws we are voting on. We open a space of freedom that makes it possible to give a positive response to a request for euthanasia. But when we speak of freedom, we also speak of freedom of conscience for everyone. And so it is provided for in the law that if a doctor refuses, he obviously has the right to do so. It is the conscience which dictates if he will accept it or not. It is his conscience that will tell him that he agrees to support a patient to the end, or that he is unable to do it because of philosophical or religious imperatives. Of course there are refusals. In these cases, when a patient makes a request and the doctor refuses in full right (and some do) – it is important to continue the care. It means that when confronted with a patient's request, if a doctor refuses, I think he has the obligation to actually pass on the request to someone else, because at some point, he ultimately refuses to support his patient. It is a rule that applies not only here. You know, in medicine, when we take on a patient, we have an obligation of responsibility and when we can no longer provide this support, we also have the obligation to see that this responsibility is covered by someone else.

SS:And you do not see an ethical problem, for example, in paying a doctor just to put an end to the life of someone, to kill someone? Is there not an ethical problem there?

PM: Well, listen, we do not pay someone to end the life of someone else. As if that act was isolated... It is never isolated. In fact, if you talk of payment, doctors are paid for giving care, supporting people in a humane manner… A doctor, a health care team is responsible for a patient. Each time a different individual, an individual who is suffering. And there at the end of the road, when there is no way out, that support is the essence of assuming responsibility for one’s patient. So what are you saying about payment? Of course, I think that anything done professionally deserves compensation. Who could think otherwise? But the doctors receive payment for taking responsibility for their patients’ wishes and they understand what that responsibility entails.

SS:Mr. Mahoux, thank you very much for this interesting interview.