Il y a longtemps que je t’aime (fictive French movie released in 2008): Juliette Fontaine was a French physician and diagnosed her son with Gaucher’s disease, a very painful and progressive disease first described in 1882 by Philippe Gaucher. Gaucher’s disease is a genetic disorder and is associated with a lot of different symptoms like fatigue, hepatomegaly, splenomegaly, anemia, severe pain and neurological abnormalities. The disease is untreatable and patients typically die within 2 years.¹ Piece by piece, her sister Léa finds out why Juliette killed Pierre. Since euthanasia is illegal in France and there were no other possibilities to relieve the child’s suffering, Juliette saw no other way out than killing her own son. She did not want to see the suffering of her child and injected him with a deadly substance. At her trial, she spoke no word of defense and stated she deserved to be punished. She was released after she served a prison sentence of 15 years. 

‘What if you want your child to die?’

Methods

Results
The Dutch Euthanasia Law

The Groningen Protocol

End-of-life procedures in newborns came under increased attention in the 90’s due to a survey in 1995 among pediatricians about the causes of death in children. The survey showed that in 60% of the 1041 pediatric deaths an end-of-life decision was made. This frequency was even higher in the neonatal intensive care unit (NICU), namely 85%. In 55% of the life-ending-decisions, a life-sustaining treatment was discontinued and in 20% of the cases a medicine with the potential of shortening the life was administered. In approximately 8% of the cases, medication was administered to hasten death, and in 1% of the cases, medication was administrated to terminate life. There were a few different motives for the latter procedure according to the survey: in 75% of the cases there was no chance of survival and in roughly 20% a very poor prognosis was predicted. During the period of 1995 till 2001, another survey was done and showed comparable results.¹¹ Before the publication of the Groningen Protocol, there was an estimate of 20 cases of active life-ending procedures in neonates per year. However, an average of 3 cases of deliberately ending the life of a newborn (DELN) were reported. A logical conclusion would be that a lot of procedures were not reported.^11,12 

A Dutch girl who was born in 2001 was immediately after birth diagnosed with Hallopeau-Siemens syndrome, the most severe subtype of epidermolysis bullosa dystrophica.¹³ There was no possible curative treatment and her prognosis was very poor. Due to the blisters, she would never be able to eat solid food and she would be underdeveloped because the disease made activities like rolling over impossible. She would also have a high risk of developing skin cancer. Her parents did not want to see her suffer and asked the pediatrician to end their daughter’s life.

‘It is more inhuman to let her live, than to let her die’

However, the pediatrician could not do this because it was illegal as she lacked the capacity of discernment and she could not make a voluntary and well-considered request. If the pediatrician ended her life, a public prosecutor would have sued him for murder. This happened twice in the 90’s, a gynecologist and a general practitioner who ended the lives of two severely handicapped infants were both sued and charged for murder but did not impose a penalty because the court stated that both the physicians acted in a state of emergency. Back to the first case, meanwhile the girl was 9 months old and her situation worsened, she was addicted to morphine and had to take a bath with vinegar every other day to clean her wounds. After almost 10 months the girl died due to her disease. However, this is not the end of the story.

Her pediatrician, Eduard Verhagen, became one of the protagonists of life-ending-decisions in infants. He and some of his colleagues in the department of neonatology at the University Medical Center of Groningen formalized the ‘Groningen-protocol’ in 2002. It contains guidelines and protocols which pediatricians can use when they engage DELN <1 year of age without the fear of being prosecuted. The protocol was accepted as a national protocol for pediatricians in 2005 and the Netherlands became the first country to tolerate active end-of-life procedures in infants. The acceptance of the Groningen Protocol formed the base for a central review committee because there are strict criteria for physicians in order to end an infant’s life (table 2).^14-16 The physician must fulfill the criteria and report to the review committee and the municipal coroner who must inform the Public Prosecution Service. After the review committee assessed the procedure, they send their judgment to the physician and the Public Prosecution Service. In case of a procedure without sufficient attention and fulfilling the criteria, the review committee also informs the Health and Youth Care Inspectorate.¹⁷

Table 2. The Groningen protocol (Verhagen and Sauer, 2005)¹⁴
Requirements that must be fulfilled:

• The diagnosis and prognosis must be certain
• Hopeless and unbearable suffering must be presents
• The diagnosis, prognosis, and unbearable suffering must be confirmed by at least one indpendent doctor
• Both parents must give informed consent
• The procedure must be performed in accordance with the accepted medical standard

Proponents:
Eduard Verhagen and Pieter Sauer (respectively Clinical Director and Chairman of the Pediatrics Department at University Medical Center Groningen):

Verhagen and Sauer are the authors of the controversial article: ‘The Groningen Protocol – Euthanasia in Severely Ill Newborns’. Suffering is a subjective sensation and cannot be measured using objective parameters. In general, it is accepted when adults state their suffering is unbearable but infants can only express their feelings through crying, movements and responses to feeding. However, Verhagen and Sauer state that experienced physicians and other professionals can determine the pain and suffering on basis of pain scales. According to neonatologists in the Netherlands and most of the neonatologists in Europa, survival is not the only goal of intensive treatment but a satisfactory quality of life is also very important. It is acceptable to not initiate or discontinue life-sustaining treatment in specific cases when it is in the best interest for the infant. Nevertheless, when there are no possibilities left to relieve the infant’s pain and suffering and no improvement is expected, it would be more humane to end the infant’s life than to continue life-sustaining treatment. According to Verhagen and Sauer, DELN should be allowed for specific cases when an infant does not have a life-sustaining treatment and under very strict conditions. Verhagen published another article in 2014: ‘Neonatal euthanasia: Lessons from the Groningen Protocol’: before the acceptance of the Groningen Protocol, DELNs were already performed but the requirements for the procedure and the legal position of the physician were unclear. So, the main goal was to regulate DELNs and to improve the transparency and the number of reported cases, in contrast to what many opponents of this protocol think.¹⁴

Summary:

So, there are different views on the Groningen Protocol. Starting with the opponents: according to Voultsos and Chatzinikolaou, the Groningen Protocol conflicts with several human rights and principles. Furthermore, they state that the terminology of the Groningen Protocol is not clear and that some of the criteria are very hard to determine in practice. According to them, not terminally ill children’s lives are being terminated, but also lives of children who have non-terminal congenital abnormalities. At last, the termination of the lives of terminally ill infants forms an impediment to research on the abnormalities the infants are born with, but also to research on alternative palliative methods to relieve suffering.¹⁸ Vizcarrondo states that the criteria of the Groningen Protocol are not based on firm moral principles. Furthermore, there is room for parental and physicians’ bias but also for bias at the level of the government. At last, he states that discontinuing life-sustaining treatment cannot be compared to DELN, in contrast to the proponents’ view.¹¹ Verhagen and Sauer are proponents of the Groningen Protocol and state that experienced physicians can determine the infants’ pain and suffering. So, in contrast to the opponents, they think the Groningen Protocol is not solely based on criteria which are hard to determine in practice. According to the proponents, DELN should be allowed when there is no life-sustaining treatment and when the physician fulfills strict criteria. Furthermore, they state that DELNs were already performed before the Groningen Protocol and the protocol’s main goal was to regulate DELNs, in contrast to what many opponents think.¹⁴

Moral and ethical issues concerning active end-of-life decisions in children aged 1 to 12 years

Several pediatricians and parents’ associations in the Netherlands advocate the revision of the current situation regarding active end-of-life decisions in children and the extension of the Dutch euthanasia law and/or the Groningen Protocol to children aged 1 to 12 years. However, not every expert shares this opinion. In this section, different experts’ views on end-of-life decisions in children aged 1 to 12 years will be highlighted. The experts are from all over the world and not solely from the Netherlands.

Opponents:
Cristopher Kaczor (Professor of Philosophy at Loyola Marymount University):

Kaczor disagrees with the statement the pediatricians and parents’ associations made regarding to the expansion of the age limit of active end-of-life procedures in children. Proponents of euthanasia and DELN state that it is the only way out of a situation with pain and unbearable suffering. Kaczor thinks this claim is false, palliative sedation is an equivalent alternative which can be used in infants, children and adults to relieve suffering and pain. In the end, palliative sedation can cause death because the dose must to be increased in order to relieve pain and suffering over a longer time, which may lead to death as a side effect. However, an undesirable consequence (for example the hastening of the dying process) is acceptable if it is an unintended side effect of a treatment necessary for a desirable effect (for example pain relief). In this way, relieving of pain and suffering is ethically permissible, even with death as a consequence. According to Kazcor, the legalization of euthanasia and the expansion to other groups of patients, and not the illegalization, forms an obstacle for the main goal of relieving pain and suffering. If we just kill people instead of alleviating their pain, then euthanasia will undermine palliative care. If more people will request for euthanasia and more lives of people without capacity of discernment are ended, there will be less people who demand palliative care. This will lead on his turn to less financial pressure to develop new methods for palliative care. Killing people is after all an easy and cheap option compared with palliative sedation and palliative care in general.²⁰

‘Why worry about relieving someone’s suffering, when you can just kill the person?’

According to some people, not choosing for euthanasia in case of pain and suffering, is similar to wanting to suffer. In this way, compassion and love for the suffering patient who does not request for euthanasia will be undermined. Many proponents think the goal of euthanasia is to relief suffering but Koczar states that a person who was killed cannot feel this relief anymore. People who have undergone euthanasia do not exist anymore so it is impossible to relief their suffering. In case of voluntary euthanasia, a patient with capacity of discernment decides based on his own judgment if he requests for euthanasia. In contrast to voluntary euthanasia, the patient cannot give consent in case of nonvoluntary euthanasia. Kaczor states children under the age of 12 years do not have capacity of discernment and cannot give informed consent for important decisions. This is also the reason why these children do not have voting rights, are not allowed to marry and have sex for example. The weaker human beings (without capacity of discernment) in our society should be protected by the law instead of deliberately ending their life without their consent.²⁰

John Lantos (Professor of Pediatrics at the University of Missouri-Kansas City School of Medicine):

The most views on euthanasia and PAS are focused on patients who suffer unbearably. However, most people who request for euthanasia are not motivated by their physical pain but the fear to lose their self-determination and the feeling that they will bother other people. Depression and hopelessness are frequently occurring problems in people who request for euthanasia. These are situations in which suffering is not only somatic but also existential. Nonetheless, these factors will probably not play an important role in life-ending-decisions for children. In general, children are not scared to lose their autonomy or to be a burden to others. Lantos thinks the differences between adults and children regarding to their rationality are too big to extend the euthanasia law. He states that palliative care would be more appropriate for these children and adds that the acceptance of death as a possible side-effect of this palliative care would not need a revision of the law.²⁰

Proponents:
Margaret Battin (Professor of Philosophy and Medical Ethics at the University of Utah):

Battin is a proponent of the extension of the Dutch euthanasia law. The aim of the Dutch euthanasia law is to help someone who does not want to live anymore with kindness, compassion, understanding and helpfulness. This idea of euthanasia is not shared worldwide because in some countries like the United States, the word ‘euthanasia’ has a very negative connotation. In these countries, euthanasia is associated with the horrible political killings committed by Nazi-Germany during the World War II. Battin asks the Dutch Minister of Health, Welfare and Sport to be as clear as possible if he extents the euthanasia law, without losing sight of the Dutch vision on euthanasia.²⁰

Marije Brouwer, Els Maeckelberghe and Eduard Verhagen (Department of Pediatrics at University Medical Center Groningen):

They advise the Minister of Health, Welfare and Sport to abolish the age limit for both the euthanasia law and the Groningen Protocol. In this way, active life-ending procedures would be possible for both competent and incompetent children in case of unbearable suffering and pain. According to the authors, the abolishment of the age limit is conforming the Dutch norms and values because the authors believe in autonomy, which knows no age limit, and the physician’s possibility to relieve suffering when there are no other ways out. They advocate that the age limit for euthanasia should be revised. According to the law, euthanasia is only possible if a human being is over the age of 12 and has the capacity of discernment. However, this age limit is arbitrary because competent children under the age of 12 cannot request for euthanasia. There is evidence showing that some children from the age of 8 are competent to make difficult decisions about their life. Nonetheless, there are also children without capacity of discernment. The euthanasia law cannot be applied to these children because they cannot make a voluntary and well-considered decision. According to the authors, the solution to this problem is an extension of the Groningen Protocol, which was originally formulated to regulate DELNs. Parents’ consent is essential for the Groningen Protocol and can be seen as an extension of the autonomy of the child. For a physician to act justly, he must understand the child’s suffering and the parents can provide very important information on this suffering. The parents’ influence prevents a disproportionate decision on life-ending decisions in incompetent children because in this way, the decision will not only be based on the physician’s justness. The authors request the Minister to initiate research in order to analyze how euthanasia is used. There are at least 5 reasons why more research is required:

1. In contrast to the large amount of data regarding end-of-life decisions for infants and human beings over the age of 12, there is barely any data on end-of-life decisions for children aged 1 to 12 years.
2. Research should also be focused on the decisions terminally sick children make. Are these children more mature than healthy children? Are they competent to make important decisions about their lives? Or are they more vulnerable and immature than healthy children?
3. The meaning of unbearable suffering should be reviewed. However, this is difficult because of its subjective and personal nature. Analyzing experiences from people who are involved in cases of unbearable suffering of children might result in a better understanding of the concept ‘unbearable suffering’.
4. The parents’ influence should also be reviewed because their intentions are not always clear. What happens when the physician thinks that the parents decide in their own interest?
5. There should be more focus on the difficulties the parents and physicians encounter. The authors urge the Minister not to focus on the judicial factors alone but also on the parents’ and physicians’ emotional and social difficulties.²⁰

Summary:

Thus, there are many different views on active end-of-life decisions in children aged 1 to 12 years. Starting with the opponents: Kaczor thinks that palliative sedation is a similar method as life termination. Furthermore, termination of life undermines palliative care itself but also the research on new palliative methods. He also states that a person who was killed cannot feel this relief anymore. People who have undergone euthanasia do not exist anymore so it is impossible to relief their suffering. At last, according to Kaczor, children under the age of 12 years do not have capacity of discernment and cannot give informed consent for important decisions. John Lantos thinks the differences between adults and children regarding to their rationality are too big to extend the euthanasia law. He states that palliative care would be more appropriate for terminally ill children aged 1 to 12 years. Now the proponents, Battin compares the underlying thoughts of the Dutch euthanasia law (kindness, compassion, etcetera) and euthanasia in other countries (Nazi-Germany, eugenics, etcetera). She states that the Dutch Minister of Health, Welfare and Sport should extend the age limit of the euthanasia law, without losing sight of the Dutch vision on euthanasia. Brouwer, Maeckelberghe and Verhagen think the age limit for the Dutch euthanasia law should be abolished for children aged 1 to 12 years with capacity of discernment and the age limit of the Groningen Protocol should be abolished for children aged 1 to 12 years without capacity of discernment. However, they state that further research is needed to get a better insight in the uncertainties concerning active end-of-life decisions for children aged 1 to 12 years.

Art form

Il y a longtemps que je t’aime (I’ve loved you so long)

The French drama movie ‘Il y a longtemps que je t’aime’ was used. The introduction of this paper is a summary of this movie and the title refers to a French children’s song about a lost love (À la claire fontaine).²² Sick children’s parents may encounter situations where their child (aged 1 to 12 years) is not terminally sick but still suffers unbearably. If their child would be dependent on life-sustaining treatment, discontinuing of this treatment could be an option to relieve the pain and suffering. However, many children who are in pain and suffering are not dependent on life-sustaining treatment, so in case of absence of life-sustaining treatment: what are the possibilities when a child suffers unbearably and the quality of life is very low in? On the one hand, parents do not want to see their child suffer but on the other hand, deliberately ending the life of such a sick child is illegal according to the law. Many arguments are based on ethical and judicial principles but the parents’ point of view is often forgotten. My goal with this art form is to emphasize the parents’ emotional difficulties. So, also parents are harmed by watching their child suffer!

As mentioned earlier, Brouwer, Maeckelberghe and Verhagen urge the Minister not to focus only on the judicial factors but to take the optimal support for human beings who find themselves in such a situation also into consideration.

Discussion

The aim of this paper was to explore the moral and ethical issues concerning DELN and active end-of-life decisions for children aged 1 to 12 years. The final goal was to formulate an answer to the question: should active end-of-life decisions be possible in the Netherlands for children aged 1 to 12 years? Different experts’ views on the main subjects of this paper were highlighted in the ‘results’ section. There is a lot of disagreement among experts about end-of-life decisions in children aged 1 to 12 years. All things considered, if a child under the age of 12 is competent, an extension of the general Dutch euthanasia law would be appropriate because proponents state that in some cases children under the age of 12 can be competent.²⁰ However, this is not true according to a Dutch study. There are four important elements for capacity of discernment regarding medical decisions: logical reasoning, comprehensibility, communication of a decision and appreciation. The study showed that, based on these elements, children have capacity of discernment from the age of 12.²³ Proponents of active end-of-life decisions for children aged 1 to 12 years state that the age limit of the Groningen Protocol should be abolished for incompetent children.²⁰ The way I see it, life termination for children under the age of 12 should only be tolerated if there is no other palliative alternative available. Further research on other palliative research is needed. However, in the meantime life termination should be possible if there really is no other option.

Strengths and limitations

The extent of this paper could be considered as a strength. It offers a very broad picture about the current state regarding end-of-life decisions for children. Another strength is the art form, which emphasizes the very important parents’ role which is often forgotten, so it is relevant to accentuate this. Although the most important views on this subject were highlighted, there are more arguments. Not every argument is discussed in this paper and this could be considered a limitation. The ‘results’ section focusses only on the Dutch situation. However, it would be better if, for example, the Belgian situation also was highlighted because Belgium abolished the age limit of the euthanasia law. So, this could also be considered a limitation.

Conclusion: what about the future?

At the end, the children’s interest is the most important element which must not be undermined. Not a single physician wants to terminate the life of an ill child. However, sometimes life termination is the only available possibility left and when physicians have to terminate a life, it has a huge impact on them. A method that reliefs suffering and pain without the need to terminate a life, would be the most ideal solution. And therefore, further research is needed to find a suitable solution for terminally ill children aged 1 to 12 years.
 

1. National Gaucher Foundation. Gaucher Disease – Prognosis and Life Expectancy. [Internet]. Available from: https://www.gaucherdisease.org/about-gaucher-disease/life-expectancy/. [Accessed 21^st of September 2019].
2. Annadurai K, Danasekaran R, Mani G. ‘Euthanasia: Right to Die with Dignity’. J Family Med Prim Care. 2014 Oct-Dec; 3(4): 477-478.
3. The Royal Dutch Medical Association. Euthanasia in the Netherlands. [Internet]. Available from: https://www.knmg.nl/actualiteit-opinie/nieuws/nieuwsbericht/euthanasia-in-the-netherlands.htm. [Accessed 28^thof August 2019].
4. Miller DG, Kim SYH. Euthanasia and physician-assisted suicide not meeting due care criteria in the Netherlands: a qualitative review of committee judgements. BMJ Open. 2017; 7(10).
5. Goligher EC, Ely EW, Sulmasy DP, Bakker J, Raphael J, Volandes AE, et al. Physician-Assisted Suicide and Euthanasia in the Intensive Care Unit: A Dialogue on Core Ethical Issues. Crit Care Med. 2017 Feb; 45(2): 149-155.
6. NVVE. De euthanasiewet. [Internet]. Available from: https://www.nvve.nl/wat-euthanasie/de-euthanasiewet. [Accessed 29^th of August 2019].
7. Rijksoverheid. Euthanasie en de wet. [Internet]. Available from https://www.rijksoverheid.nl/onderwerpen/levenseinde-en-euthanasie/euthanasie. [Accessed 28^th of August 2019].
8. Cohen-Almagor R. Should the Euthanasia Act in Belgium Include Minors? Perspect Biol Med. 2018; 61(2): 230-248.
9. Associatie KU Leuven. Belgian law on euthanasia. [Internet]. Available from: https://associatie.kuleuven.be/p/flandershealthcare/tourofflanders/belgian-law-on-euthanasia.pdf. [Accessed 31^st of August].
10. NVVE. Wat is euthanasie? [Internet]. Available from: https://www.nvve.nl/wat-euthanasie/over-euthanasie[Accessed 29^th of August 2019].
11. Vizcarrondo FE. Neonatal euthanasia: The Groningen Protocol. Linacre Q. November 2014; 81(4): 388-392.
12. Verhagen E. Neonatal euthanasia: lessons from the Groningen Protocol. Semin Fetal Neonatal Med. 2014 Oct; 19(5): 296-9.
13. Koshida S, Tsukamura A, Yanagi T, Nakahara S, Takeuchi Y, Kato T, et al. Hallopeau-Siemens dystrophic epidermolysis bullosa due to homozygous 5818delC mutation in the COL7A gene. Pediatr Int. 2013 Apr; 55(2): 234-7.
14. Verhagen E, Sauer PJJ. The Groningen Protocol – Euthanasia in Severely Ill Newborns. NEJM. March 10 2005; 352: 959-962
15. Tedesco M. Dutch Protocols for Deliberately Ending the Life of Newborns: A Defence. J Bioeth Ing. 2017 Jun; 14(2): 251-259
16. UMCG. Levensbeëindiging bij pasgeborenen: zorgvuldigheid staat voorop. [Internet]. Available from: https://www.umcg.nl/NL/UMCG/Nieuws/Nieuwsberichten/Paginas/Levensbeëindiging_bij_pasgeboren_en_zorgvuldigheid_staat_voorop.aspx. [Accessed 29^th of August].
17. LZA/LP. Procedure bij late zwangerschapsafbreking of levensbeëindiging. [Internet]. Available from: https://www.lzalp.nl/procedure. [Accessed 29^th of August].
18. Voultsos P, Chatzinikolaou F. Involuntary euthanasia of severely ill newborns: is the Groningen Protocol really dangerous? Hippokratia. 2014 Jul-Sep; 18(3): 193-203.
19. Jotkowitz AB, Glick S. The Groningen protocol: another perspective. J Med Ethics. 2006 Mar; 32(3): 157-158.
20. Brouwer M, Kaczor C, Battin MP, Maeckelberghe E, Lantos JD, Verhagen E. Should Pediatric Euthanasia be Legalized? Pediatrics. February 2018; 141(2).
21. Nagral A. Gaucher Disease. J Clin Exp Hepatol. 2014 Mar; 4(1): 37-50.
22. Mama Lisa’s World. À la claire fontaine. [Internet]. Available from: https://www.mamalisa.com/?t=es&p=141. [Accessed 3^rd of September]
23. Grootens-Wiegers P, Hein IM, van den Broek JM, de Vries MC. Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMC Pediatr. 2017 May 8.