Friday, July 12, 2013

Rain, BlogHer and child vs parent interests

Ben's favourite weather is rain. When he gets up in the morning he looks for clouds and dark sky out his window. He's been known to appeal to the heavens, clasping and shaking his hands, for rain. I'm not sure why he likes it so much. Perhaps because it's cool and refreshing: he tends to overheat in the sun and doesn't mind getting wet. Probably because it strikes him as funny: the skies opening up with water, as we humans scurry for cover, the potential for jumping in a large puddle, the tap tapping on our roof. 

During the flooding in Toronto last week he was in heaven.

On July 25 I'll be speaking on a panel at BlogHer '13 in Chicago. Let me know if you plan to be there! The session is called Special needs and caregiving: Changing policy and perception. I'm speaking with Julia Roberts (, Christina Shaver (Hopeful Parents) and our moderator is Jen Reeves (Born Just Right. I have followed each of these bloggers and am thrilled to meet them in person.

Ben is off to his beloved Camp Kennebec in a week. Meanwhile, D'Arcy left for Nicarauga this morning to volunteer at Outreach360, a non-profit that runs centres where disadvantaged children can learn to read and write (in Spanish and English). Our dear friend Coco (who first taught us sign language and spends a week at Camp Kennebec with Ben each year) is the director of the program. D'Arcy has been fundraising for the group and yesterday picked up some donated school supplies from Staples. For months he's been sitting on the porch listening to Spanish tapes and repeating phrases. Sometimes when the kids phone he'll speak in Spanish, until they hang up! Finally, he'll have someone to understand him.

A Canadian ethicist told me about a new policy from the Royal Dutch Medical Association (click on the English press release) that supports giving a lethal injection to disabled newbornswhose artificial feeds have been withdrawnbecause watching them die "causes severe suffering for the parents."  

Typically Dutch pediatric medical ethics and law in children's treatment decisions are based on "the child's best interests"not parent interests.

The Groningen Protocol supports euthanizing Dutch newborns with a "hopeless prognosis" and "unbearable suffering." For example, "a child with the most serious form of spina bifida will have an extremely poor quality of life, even after many operations."  

I asked Dr. Franco Carnevale, a psychologist, nurse and ethicist at Montreal Children's Hospital, if the new move to include "parent suffering" as a basis for a child's treatment decision was problematic.

"The 'child's best interests' was created to protect the voiceless vulnerable," Dr. Carnevale said. "Any time that the suffering or interests of others in a powerful position can trump the interests of the powerless in medicine, this is a direct breach of their rights. This would treat children as objects that are only worthy in terms of the pleasures they can bring, rather than humans with their own individual rights and interests that should be protected."

Meanwhile, a memorial wall is being built in Berlin to honour the 300,000 children and adults who were killed during Hitler's euthanasia program for those with physical and intellectual disabilities.


I have written numerous times about the Dutch euthanasia situation (and intend to write much more) coming as I do from Holland and being the father and primary caregiver of an extremely physically and mentally compromised child. Had he been born in Holland no doubt I would have been presented the option, as many parents are in like situations, of ending his "unbearable suffering". Many parents can be swayed by the presentation of their child's condition by physicians and herein, as the practice has entered the realm of 'normalcy' in Holland, Belgium and England (where parents have had to defend in court their child's right to sustained care when Hospital has decided it is enough).
The concept of "unbearable suffering" cuts a broad swath over disabled children's conditions; don't be fooled by "the most serious form of..." rhetoric as many children go on to have lives which are enriching. More than that, we know so little of the internal life of some children that it is ludicrous to assume the extent of the suffering, and thus imply that there are no compensating factors. In looking only at the suffering, and in giving a dubious prognosis, Physicians are herding public opinion.
The new amendment goes even further (having read the full Dutch original) and states that the decision lies SOLELY with the physician. The parents are "given time to adjust" to the idea of speeding the demise of their child, but cannot stop it once the decision has been made.
From personal experience I can say that in practice it goes so far that family need not necessarily be notified the actual assisted dying protocol has begun. I'm certain some will dispute this, citing official texts. What happens on the ground though, is quite different.
Whether one believes that euthanasia is a normal mode of behavior to deal with a child's suffering or not, the groningen protocol was created de facto to give legal credence to a common practice in the Dutch medical system, I am not aware of any national referendum which took place on the matter.

Hi Eric -- I'm very grateful for your informative response!