The Belgium Federal Commission on the Control and Evaluation of Euthanasia in its most recent report of Belgium euthanasia statistics stated that between January 1, 2016 and December 31, 2017, three children died by lethal injection under the country’s euthanasia law. They were a nine year old with a brain tumor, an eleven year old with cystic fibrosis and a seventeen year old (probably a boy) with Duchenne muscular dystrophy. (1) We know nothing else about these persons. We don’t even know whether each of them had involved parents or if one or more had guardians. In both life and untimely death, they are reduced to age and general diagnosis. As individuals, they are given no backstory. They are profoundly anonymous.
It calls to mind that in 1980s America, infants who were denied basic medical care and nourishment due to disability were called “Baby Does”. (2)
Belgium’s euthanasia law, as amended in 2014, allows children of any age to opt for a lethal injection provided certain criteria are met. A doctor must state that the child is “in a hopeless medical situation of constant and unbearable suffering that cannot be eased and which will cause death in the short term.” Another doctor who is a psychiatrist must opine that the child understands what euthanasia is and is not “influenced by a third party”. Parental consent must be obtained.
These rules have been characterized as very strict (3) but they implicitly allow the two doctors and the parents to drive the process. A child can be killed if his doctor judges that he is embroiled in hopeless suffering and will die soon, the parents agree that the child would now be better off dead, and the child buys into this enough that the second doctor – who knows the judgment of the first doctor – can attest the child is acting of his own free will. (I call this the domino theory). Did something like this happen to any of the anonymous three? We just don’t know.
All the criteria are subjective. For example, what is the dividing line between a child being influenced in her decision and not being influenced? The Conversation Project in the U.S. suggests that one way to elicit a “seriously ill” child’s views on end-of-life care is to discuss heaven. (4) Will bringing up heaven when speaking about options influence a nine year old who may view heaven as Disneyworld? Might an eleven year old be influenced if she reads an article about how much it costs to treat kids like her? Would knowing that your parents would consent to euthanasia if you wanted it influence a seventeen year old? It is enough to make a psychiatrist’s head spin. What underlines a finding of constant suffering? Would a doctor ever equate the disability associated with a condition with suffering? Would suffering associated with a lack of pain management or with treatment delivered in a needlessly invasive way ever be erroneously attributed to the child’s condition rather than to a deficiency in medical practice? Until quite recently, babies were operated on without anesthesia in the United States.
Luc Proot, a member of the Belgian Commission, said in regard to each of the anonymous three, “I saw mental and physical suffering so overwhelming that I thought we did a good thing.” (5)
Some things are strange about this statement. It suggests that Proot met each of the kids. Instead, as part of his official role, he read the case file on each child after they died – case files written by the doctors involved in the euthanasias and whose identities like the identities of the children were withheld. (6)
Proot said “we did a good thing.” This seems like an acknowledgment that the children, rather than being beneficiaries of children’s rights and in charge of their destinies, were acted upon.
Lastly, there is no mention of the kids being close to death.
In Belgium, euthanasia is available to a wide swath of the adult population. To be sure, those with terminal illness can request the needle but so can people with two or more incurable conditions, neither of which is life threatening, as well as people with dementia or psychiatric disorders. In 2017 there were 375 cases of reported euthanasia of people whose deaths were not expected in the near future or 16.2% of all cases of reported euthanasia. (7)
With children though, euthanasia is supposed to be restricted to cases where death is near. There is no way to speculate on how far along the 9-year-old’s brain tumor was but there is a good chance that the 11-year-old and 17-year-old were not inevitably dying. Today, cystic fibrosis and Duchenne muscular dystrophy are chronic, disabling diseases but with proper medical management, they don’t tend to be fatal in childhood. The median life expectancy of a child born in the United States with cystic fibrosis is now 43 years and that doesn’t factor in the scientific advances that are likely to occur. (8) Guys with Duchenne often live through their 30s and sometimes into their 40s and 50s. (9) To put this into context, the average life expectancy for men and women in the United States in 1917 was 48 and 54 years respectively and this was before the great influenza epidemic where average life expectancy really plummeted. (10)
Were their special circumstances leading the doctors of the eleven-year-old and the seventeen-year-old to conclude they were both close to death? We just don’t know. Had the children had access to reasonable and empathetic care for their condition? We just don’t know. Were these instances where the doctors conflated ongoing disability with a terminal state? We just don’t know.
Parents usually want the best for their offspring but it is naïve to assume that the need for parental consent is a foolproof safeguard. Doctors are authority figures. They steer parents just as parents steer their children. When Stephen Drake was born, the doctor who injured him through improper use of forceps told his parents that the odds were 100 to 1 against him living through the night, and the odds were a million to one against him not being a “vegetable” if he did survive. Stephen has written, “The odds the doctor cited for my survival and recovery were almost certainly made up on the spot and were aimed at getting my parents to ‘accept’ my death as a good, if not clearly inevitable, thing”. (11) Fortunately for us all, his parents rejected the suggestion but there may well have been other cases where this doctor succeeded in using a speculative prognosis to convince the parents to “let nature take its course.”
In the 1980’s, the groups who opposed any legal protections for disabled infants in hospitals -mainly medical groups – argued that parental autonomy was paramount. Nevertheless, one pediatrician told me that as long as she evidenced enough concern for child and family, she could generally get parents to agree to almost anything. She felt that parental autonomy was quite often a sham.
Of course, there have been cases like the Charlie Gard case in Britain where parents have indeed wanted life sustaining care for their child and have been opposed by doctors and hospitals.
Why was parental or guardian consent given for the euthanasia of the anonymous three? We just don’t know.
In the last analysis, all that can be said about the fate of the anonymous three is what Charles Lane said in his opinion piece in the Washington Post, “the Belgian public’s support for euthanasia remains undiminished. The precedent for euthanizing children has been established, and more will almost certainly receive lethal injections this year, next year and the year after that.”(12)
As for the Baby Doe controversy, it was never resolved, just submerged. Food, water and antibiotics in hospitals have been redefined as life support and extraordinary care, depending on the circumstances.
As a young professional woman in the 1980s, I had the wind knocked out of me when I learned there was no social consensus about the right of people with disabilities to survive early childhood. I would like to say to the young people with disabilities of today, there is a resistance. Older people with disabilities are working hard to make you safe in medical settings. We will be passing the torch to you.
FOOTNOTES
- http://www.raggededgemagazine.com/0700/0700ft1.html
- https://www.cbsnews.com/news/child-dies-by-euthanasia-in-belgium-where-assistance-in-dying-is-legal/
- https://theconversationproject.org/wp-content/uploads/2017/02/ConversationProject-StarterKit-Pediatric-English.pdf
- https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d
- Ibid.
- http://alexschadenberg.blogspot.com/2018/08/euthanasia-in-belgium-social-experiment.html?utm_source=Euthanasia+Prevention+Coalition+Contacts&utm_campaign=bc1ff5964a-EMAIL_CAMPAIGN_2018_08_31_02_01_COPY_03&utm_medium=email&utm_term=0_105a5cdd2d-bc1ff5964a-198574557
- https://www.cff.org/CF-Community-Blog/Posts/2017/Survival-Trending-Upward-but-What-Does-This-Really-Mean/
- https://www.mda.org/disease/duchenne-muscular-dystrophy
- https://www.google.com/search?ei=aH2aW-S0Os-izwKWjrrYBw&q=life+expectancy+1918&oq=life+expectancy+1918&gs_l=psy-ab.3..0l2j0i22i30l8.85101.91288..96229…0.0..0.99.366.4……0….1..gws-wiz…….0i71.HU__69ZKIfI
- http://notdeadyet.org/2012/03/stephens_story.html
- https://www.washingtonpost.com/opinions/children-are-being-euthanized-in-belgium/2018/08/06/9473bac2-9988-11e8-b60b-1c897f17e185_story.html?utm_term=.0310c1b7da8d
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