On 12 December 2013 the Belgian Senate voted 50-17 in favour of a bill to amend the euthanasia law to allow “emancipated minors” to request euthanasia on the same terms as adults; and to allow “unemancipated minors” with the capacity for discernment to request euthanasia for a hopeless medical situation resulting in death shortly and who have reported a constant and unbearable physical suffering that cannot be appeased and that results from a serious and incurable disease or an accident.[1] For unemancipated minors at least one parent must consent to the act of euthanasia.

The proposed law was transmitted to the Chamber of Representatives on 13 December 2013[2] where it passed by 88 votes to 46 on 13 February 2014[3]. It was signed into law by the King on 3 March 2014 and is now in effect.

Three children have so far been killed under the Belgian law in 2016 and 2017. These were a 17-year-old child who was suffering from muscular dystrophy; a nine year old child, who had a brain tumour, and an 11 year old child, who was suffering from cystic fibrosis.

Luc Proot a member of the Belgium’s Federal Euthanasia Evaluation and Control Commission, commented to Charles Lane of the Washington Post that he “saw mental and physical suffering so overwhelming that I thought we did a good thing”[4] As Lane points out he is referring to the Committee approving the cases after the fact based on reports from the doctors who carried out the killing. It is curious that Proot refers to “mental and physical suffering” when the Belgian law specifically refers only to “unbearable physical suffering” in relation to children in contrast to a reference to “unbearable physical or psychological suffering” for adults. This comment raises a doubt in relation to each of these three cases of child euthanasia as to whether there was “unbearable physical suffering” that could not be alleviated.

Good palliative care can relieve the various forms of physical suffering associated with end-stage brain tumours.[5]

Relevant to these cases is a discrepancy between the French and Dutch language versions of Article 3 Section1 of the Belgian euthanasia law in relation to children. The French language version reads “qui entraîne le décès à brève échéance”[6] which means “which will cause death in the short-term”. The Dutch language version reads “binnen afzienbare termijn het overlijden tot gevolg heft”[7] which means “will result in death in the foreseeable future”.

There is a clear difference between death being caused in the “short-term” or in the “foreseeable future”.

Life expectancy for people with cystic fibrosis is increasing significantly in response to developments in treatment regimes. In the United States the median predicted age of survival for people with CF has now increased to 47 years.[8] It is by no means clear that the 11 year old child euthanased in Belgium in 2016 or 2017 was facing imminent death. He or she may have had years to live. Depression is also a particular issue with CF.[9] The “mental suffering” mentioned by Luc Proot may have been relievable through appropriate treatment.

It is not known which form of muscular dystrophy the 17 year old child had. The most serious and common form is Duchenne muscular dystrophy (DMD). “Until relatively recently, boys with DMD usually did not survive much beyond their teen years. Thanks to advances in cardiac and respiratory care, life expectancy is increasing and many young adults with DMD attend college, have careers, get married and have children. Survival into the early 30s is becoming more common, and there are cases of men living into their 40s and 50s.”[10]

On the available information it is not clear whether in this case the child was both imminently dying and experiencing unbearable physical suffering that could not be alleviated.



Euthanasia of children in the Netherlands

Children as young as 12 years of age may be given euthanasia under the Netherlands euthanasia law.

For 12 to 15 year old children the parents must agree with the child’s request for euthanasia before it can put into effect. For 16 and 17 year olds the parents must be involved but the decision is for the child alone.

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A total of fourteen children have been given euthanasia, including one 12 year old child in 2005[11], a 16 year old in 2015[12], five 17 year old children between 2002 and 2015[13] and two children (aged 16-18 years) in 2016[14], three children in 2017[15] (on aged 16-18 years, other two cases no case report), and two children both aged between 16 and 18 years in 2018[16].

All cases with detailed case reports (11 out of 14) involved end stage cancer.

References:

[1] https://www.senate.be/www/?MIval=/index_senate&MENUID=21320&LANG=fr

[2] https://www.lachambre.be/FLWB/pdf/53/3245/53K3245001.pdf

[3] https://www.dekamer.be/doc/PCRI/html/53/ip186x.html

[4] Charles Lane “Children are being euthanised in Belgium”, Washington Post, 6 August 2018, https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?noredirect=on&utm_term=.388d76a167e4

[5] See for example: M. Cohn et al., Transitions in Care for Patients with Brain Tumors: Palliative and Hospice Care, 2014 https://www.ucsfhealth.org/pdf/transition_of_care_handbook.pdf;

Canadian Virtual hospice, What can be expected as brain cancer progresses?, https://www.virtualhospice.ca/en_US/Main+Site+Navigation/Home/Support/Support/Asked+and+Answered/What+to+Expect+with+Various+Illnesses/Cancer/What+can+be+expected+as+brain+cancer+progresses_.aspx

[6] https://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=fr&la=F&cn=2002052837&table_name=loi

[7] https://www.ejustice.just.fgov.be/cgi_loi/change_lg.pl?language=nl&la=N&cn=2002052837&table_name=wet

[8] Cystic Fibrosis Foundation, https://www.cff.org/CF-Community-Blog/Posts/2017/Survival-Trending-Upward-but-What-Does-This-Really-Mean/

[9] Cystic Fibrosis Foundation, https://www.cff.org/Life-With-CF/Daily-Life/Emotional-Wellness/Depression-and-CF/

[10] Muscular Dystrophy Association, Duchenne Muscular Dystrophy (DMD), https://www.mda.org/disease/duchenne-muscular-dystrophy

[11] Case 2005-01, https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/minderjarigen/2005/oordeel-2005-01

[12] Case 2015-59, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2015/geen-redelijke-andere-oplossing/oordeel-2015-59/oordeel-2015-59.pdf

[13] Regionale Toetsingscommissies Euthanasie, Jaarverslag 2015, p. 14 https://www.nvve.nl/files/8414/6166/0719/RTE_jaarverslag2015DEF.pdf

[14] Regionale Toetsingscommissies Euthanasie, Jaarverslag 2016, p. 14 reports only Case 2016-58 https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/jaarverslagen/2016/april/12/jaarverslag-2016/RTEjv2016.pdf ; Case 2016-10, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2016/zorgvuldigheidseisen-algemeen/oordeel-2016-10/Oordeel+2016-10.pdf ;

Case 2016-58, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2016/vrijwillig-en-weloverwogen/oordeel-2016-58/Oordeel+2016-58.pdf

[15] Regionale Toetsingscommissies Euthanasie, Jaarverslag 2017, p. 16 https://www.euthanasiecommissie.nl/uitspraken/jaarverslagen/2017/mei/17/jaarverslag-2017

Case 2017-13, https://www.euthanasiecommissie.nl/binaries/euthanasiecommissie/documenten/publicaties/oordelen/2017/vrijwillig-en-weloverwogen-verzoek/oordeel-2017-13/Oordeel+2017-13.pdf

[16] Case 2018-48, https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/2018/2018-41-tm-2018-50/oordeel-2018-48 ; and Case 2018-51, https://www.euthanasiecommissie.nl/uitspraken/publicaties/oordelen/2018/2015-51-tm-2018-60/oordeel-2018-51