Woensdag 21 mei 2014: A Child's Right to Die

21 mei 2014 - Norrköping, Zweden

Introduction

The course is called Children’s Rights and Participation. In this paper I will focus on a child’s right to die (in Belgium). The inspiration for this subject came from my grandmother, Mieke Hermans. We lost her in March this year. Mieke Hermans had a rare form of cancer, which they could not cure anymore. She had a lot of pain and slowly became dependant of others. Being terminally ill it was only a matter of weeks before she would pass away.  Instead of waiting for death to come she decided to ask for euthanasia. This way she could choose her moment and have a dignified death. Mieke Hermans was lucky to live in the Netherlands, as there are only three countries in the world were euthanasia is allowed: Luxemburg, the Netherlands and Belgium.

Death happens eventually to everyone and can happen in many different ways. This paper is about the right to die. This can sound strange because death is the same for everyone: old or young, male or female, rich or poor, adult or minor. Luxemburg has euthanasia for adults. The Netherlands have euthanasia from the age of sixteen (with parental consent). Euthanasia is an important topic in the entire world. Many countries are debating whether or not it should be allowed. Countries such as Germany, France and the USA have prohibited it. Were Luxemburg and the Netherlands allow euthanasia for adults Belgium goes further.  In Belgium is it since the thirteenth of February 2014 allowed for minors to request euthanasia.  As death with children is a very sensitive subject media all over the world came to cover this recent development.

I will try to find an answer on the following research questions:
1.      How did Belgium came to de decision to allow euthanasia for minors and what are the implications for the practical use? How is it implemented in practice?
2.     Is the Belgian right for euthanasia for minors in conflict with the children’s rights in general?

The first chapter will cover euthanasia with adults. It will define the concept of euthanasia. Next it explains the process adults have to follow before the request can be approved. After explaining the background the second chapter depicts the expansion on the law of euthanasia for children, as this is more recent. It explains where the request to expand the law is coming from. Then it will connect different rights and participation of the child with the expanding law. The last chapter provides a conclusion of the entire topic by summarizing the important aspects of the child’s right to die. The paper will end with a personal opinion.

Belgium as world’s second country with euthanasia.

The twelfth of April 2001 the Netherlands approved euthanasia starting from the age of sixteen (with parental consent). One year later, on the twenty-eighth of May 2002 the Belgian King Albert II signed the law for euthanasia for adults. This was a big step for Belgium as it was the second country in the world to allow adults to ask for euthanasia.

It is important to know that there is a difference between getting euthanized and getting euthanasia. Getting euthanized is for animals for example: animals in animal shelters get euthanized when no owner can be found or the animal is too aggressive. The word “euthanasia” comes from Greek and literally means “a good dead”. The Belgian law defines euthanasia as “the act of deliberately ending another person’s life at the patient’s explicit request. Euthanasia can only be performed by a doctor[1]”.

The process of requesting and getting euthanasia is complicated and has to be taken carefully. This chapter will explain the process as this is the same for adults and minors, so the next chapter can focus on the rights of the children. An adult has two ways to ask for euthanasia. The first one is when the physical or psychological suffering is unbearable. The second one is asking for euthanasia in advance in case something might happen to him/her. Here we will only focus on the first way because this is the same for children and minors are not allowed to request euthanasia in advance.

 Before a patient can request euthanasia the following conditions[2] need to be met:
-          The patient is at the time of the request of age.
-          The patient is at the time of the request capable to make important decisions.
-          The request is written, voluntary, considered and repeated.
-          The request has not come about as a result of external pressure.
-          The patient is in a medically hopeless situation.
-          The physical and/or mental suffering is constant and unbearable, and cannot be mitigated.
-          The condition of the patient is due to a serious and incurable condition caused by accident or illness.

The law gives adults the right to request euthanasia, not on the euthanasia itself. A doctor is not obligated to perform the euthanasia. It is the responsibility of the patient to find a physician who wants to consider the request. If the doctor honours the request he needs to take the following steps before he is allowed act on it[3]:
-          Inform the patient about his health and life expectancy.
-          Discuss treatment options with the patient and with him agree that there is no other reasonable solution to his situation.
-          Make sure that the request is permanent and repeated.
-          Consult another physician about the serious and incurable nature of the disease and inform him about it. Getting a second opinion on the case.
-          Discuss the request with the patient's family and, if applicable, with the nursing team which is in regular contact with the patient.
-          The team that has regular contact with the patient has to make sure that the patient has possibility to consult all the people who he wants.
-          If the death does not take place in the short term, he needs consult a second physician about persistent, intolerable and the not softened nature of suffering and voluntary, considered and repeated nature of the request.
-          A month needs to pass between the written request and the implementation of the injection.
-          The doctor needs to complete the medical record of the patient.

The doctor is liable when he acts upon euthanasia. De Controle- en Evaluatiecommisie (The Monitoring and Evaluation commission) examines whether euthanasia is carried out according to legal requirements. Is that not the case, it may submit the file to the court. With this procedure Belgium does everything possible to exclude the misuse of euthanasia. The Controle- en Evaluatiecommisie (the Monitoring and Evaluation commission) does constant research on the practice of euthanasia. They look at the total number of requests, the reason for the request, the number of requests that were approved and denied,... Each report evaluates two years of data. The fifth, and most recent, report covers the years 2010 – 2011, and was published June 2013.  It shows that in these two years 2086 requests were made, all of them were approved. As age is an important factor in this paper we look at the age on which euthanasia was acted upon. Table 1 shows the number of performed euthanasia.

Table 1: Age of the patients.[4]

Leeftijd patiënten die euthanasie aanvragen (volwassenen)

The most requests (69%) for euthanasia were made between forty and seventy-nine years old. Under the age of twenty no requests were made. The number of requests drops when the patients are eighty years or older. The commission had to send none of the cases to court as they were all preformed perfectly according to the law. The Controle- en Evaluatiecommisie detected that apart from the compulsory consultation of a second doctor, physicians often consult extra doctors and teams from palliative care. This shows that the decision making is carefully considered.[5] Since the legalisation in 2002 the number of requests is increasing. We can deduce that patients prefer having the choice of euthanasia as more patients request it.

Table 2: Number of requests.[6]

Leeftijd patiënten die euthanasie aanvragen (volwassenen)

Children equal to adults. Belgium as the first country to approve euthanasia for minors.

In 2009, a survey showed that Flemish physicians (52%) more than Walloon physicians (43%) felt that the existing law should be changed to include minors.[7] Nearly five years later, on the sixth of November 2013 a group of specialized paediatricians and professors sent an open letter to the government. They requested that the law for euthanasia should be expanded to include minors. From that moment on there was a big debate if this is the human thing to do. As this paper makes no difference in the outcome of the law, no arguments either pro or contra will be discussed. This chapter shall link the law for adults to children’s rights and therefore the expansion of the law and research if they are in conflict with each other.

The expansion to minors was approved the thirteenth of February 2014. The conditions for children to request euthanasia has one big difference. Where adults can request euthanasia for physical and psychological suffering, children can only request it for unbearable physical pain. The law does not allow psychological pain. This is to exclude the possibilities for teenagers to use it as an option to commit suicide. However the process for the request is generally the same as for adults. Unlike with adults is a request of a minor the result of many conversations with the parents and physicians.

More and more people have the opinion that children need to be seen as equal to adults, and that they should be treated more as beings than as becomings who have to do what adults say. A good example is education. At schools children become more and more a part of the conversation. Adults realize that children have interesting things to say and that children can help to improve systems and make schools better for them. Schools use the four P’s: provision, protection, prevention and participation. Each of this four words stand for a number of important rights children have. These four P’s can also be found tin he Convention of the Child, written by UNICEF.
-          Protection: A child has the right to be protected from things and people that may harm him/ her.
-          Participation: A child has the right to have an opinion and to be listened to. With this the child had the right to be taken serious.
-          Provision: Governments and adults need to provide the recourses so the rights of a child can be executed the best as possible.
-          Prevention: Governments and adults should do everything possible to prevent that the rights cannot be carried out.

Comparing the rights of participation, protection and the general guiding principles with the right to die for minors we see that there might be a conflict.  The participation rights focuses in the right of having an active voice. The right of protections focuses on the protection of the child from harm. The guiding principles note general requirements of all rights. At first sight the biggest contrast can be found between the law and article six “Children have the right to live. Governments should ensure that children survive and develop healthily[8].” As this article says that the government must do everything possible for children to survive. And the newly expanded law gives children the right to die. Comparing it to some other children’s right we see that there might be no problem at all. As the right to die is can be supported by other children’s rights.

Art. 3 (Best interest of the child), explains that when adults make decisions that affect a child, the best interest of a child must be the primary concern.[9] All adults should do what is best for the child. This means that doctors have to look for the best way to treat the minor. This does not directly mean euthanasia, different options, such as palliative care, will be discussed in conversations with physicians, parents and the child. This also implies that when a child does not want to have treatment, one should look for a way to end the suffering. The child, parents and physicians should consider if requesting euthanasia is indeed in the best interest for the child. This differs from child to child. The best choice for one child does not necessarily mean that it is the best choice for the other.

Art. 12 (Respect for the views of the child), makes clear that when adults make decisions that can affect children they have to listen to the opinion of the child.[10] This means that a child can express the way he/she feels (about the situation or the treatment and the treatments which are coming). This means that when a child is so tired after a long time of treatments and pain and he doesn’t want to do it anymore the adults need to respect that opinion and have a conversation about it.

Art. 17 (Access to information; mass media), “Children have the right to get information that is important to their health and well-being.” This corners not only mass media – radio, television, newspapers and Internet content sources but also the information from the physicians. The minor should know the situation he is in. This helps again with making the best decisions for the child.

It tells us that a doctor should share the information with the minor, and try to save the child but when he/she  does not want to be helped anymore he/she has the right to request euthanasia.

A child that requests euthanasia is a difficult situation. Is a child capable of making these decisions? How do doctors decide if the patient has the legal capacity (handelingsbekwaam)? When a child makes the request the doctor has to make sure that the minor can understand and is able to transfer the meaning of the concept “death”.  If we take the Rights of the Patients, written in 2002, a patient has to give permission before a treatment can start. The Rights of the Patients quote in art. 12§2 “The patient will participate in the medical conversations, taking the age and maturity in calculation.” As humans mature with age it is natural to give the opinion of a teenager greater weight than the opinion of a toddler. Experience however teaches that minors with serious illnesses, who's end of their life is approaching, mature very fast. Often those minors are more mature than healthy (young) adults. As minors mature quickly they will have judgement skills (oordeelsbekwaam).  This means that those minors are able to understand and transfer the meaning of the concept “death”. There can be a lot of tension as the physicians have to inform those patients as young adults but they cannot act upon it. That is why a “mental age” should be used instead of a “real age”.

Often people explain their worries about the misuse of euthanasia. According to the paediatricians and professors from the open letter they do not know what they are talking about.[11] Physicians are not looking for those situations, even though they exist. The process before one acts on the request is carefully taken. As we look back at the results of the requests of adults in 2010-2011 we see that the age group under twenty didn’t make any request. It is not because they do not request it that they don’t like having the choice. Because in 2010-2011 no request were made in the group >20 does not mean that there were no requests previous years. As the group >20 is close to the minors make us think that minors would react the same.

 

Conclusion

Since 2002 Belgian inhabitants were able to request euthanasia. For a patient to make a request he/ she has to meet a number of strict conditions. Slowly people got used to the idea of euthanasia as a dignified death. The increasing number of requests can be seen in table 1, showing that it is accepted by a large part if the inhabitants. As more and more patients requested euthanasia, much research was done to get knowledge of the attitude of physicians and nurses towards euthanasia. This was rather positive, as the patients and the family often thanked the acting doctor for relieving them from the pain and suffering. Strict conditions have to be met and process steps must be followed giving the physicians and nurses some guidance in their consideration. The Controle- en Evaluatiecommisie follows up on each request and have found no suspected situations.

In 2009 researchers found out that almost half of the physicians felt that minors needed to be included in the law. In 2013 a group of paediatricians and professors brought this to again to the attention of the government. The letter started a debate between politicians. After many debates and conversations it was approved in the senate. Next it went to highest level of the government. There the law was approved with 86 votes pro, 44 votes contra and 12 politicians who did not vote. Euthanasia for minors was approved on thirteenth of February 2014.

The expansion of the law was approved. But is the Belgian law of the right to die for minors in conflict with the children’s rights in general? On one hand we can say that there is a conflict between the expanded law and article 6 of the Convention of the Rights of a Child (CRC). As the CRC explains that a child had the right to live and that the government should ensure that children survive and develop healthily. On the other hand the right to die can be supported by other children’s rights: article 12, 13 and 17. Those three articles talk about the best interest of the child, the right to be listened to and the right to information. Those articles support that the child becomes part of the conversation. And when looking after the best interest of the child he/ is being listed to and respected. With that are the Belgian rights of the patients where article 12§2 again supports that children will be included in the conversation. Also the Patient’s right tells us that no treatment can start without permission.

As the death of a child is a sensitive and difficult situation everyone should act carefully. Conversation is an important element in the decision making and cannot be missed. Children are protected from misuse by strict conditions that have to be met and steps that need to be followed. Children can only request euthanasia for unbearable physical pain. It is important that people realize that doctors will never act upon the request when the circumstances are suspicious.

Everyone knows it is important to have a choice. It is not because you have the chance to request it that you will take that chance because you do not want it. This is the same with children: having the choice to euthanasia does not mean they will request it. However it stays important that they have the choice.

 

 

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