Understanding Medical Consequences, and Medical Force

I've written before about the dilemma of families of young cancer patients who disagree with doctors and find their rights overruled. There have been a number of stories lately about parents losing custody or being threatened with it for siding with their kids over alternative treatments or a desire to give up after a long hard fight.

There's always a question of whether children can really understand the choices they're making and the consequences thereof. I've generally felt that the wishes of parents and kids should be respected -- at least to the point of discussion and consideration, rather than knee-jerk custody seizure.

A recent story, though, had a particularly heart-wrenching twist. The Globe and Mail report, which I originally saw linked in a ParentDish post, seems to tell a tale much like the others, of a parent losing custody for supporting an 11-year-old cancer patient's desire to pursue alternative treatments instead of continuing chemotherapy. But there, way at the end of the article, is a sentence that sure upped the degree of difficulty on the whole thing.

This particular young cancer patient also has fetal alcohol syndrome.

I have a 15-year-old who is on the fetal alcohol spectrum, and he sure as heck would not be able to make a life and death decision like that. One of the hallmarks of FASD is an inability to understand cause and effect, or to fully see the consequences of actions. I have no doubt that my son, if put in the terrible position of needing painful and debilitating treatments, would be enormously in favor of discontinuing them. Being incapacitated and restrained and unable to pursue his normal routine would be excruciating for him. And for me, to force him. Unimaginable.

But could he make a decision, truly understanding that it might mean the end of his life? No. No way.

I surely sympathize with this family. What a terrible position to be in. I sympathize not at all with the authorities whose answer has been to seize custody and make this child go through the ordeal without the people who love him. That sort of disruption is devastating to any child, but a child with FASD, who so desperately needs stability and routine, would be entirely unable to understand or withstand it.

Surely, there has to be a better way for authorities to handle these situations. They may consider the abandonment of life-saving treatment to be child neglect, but they're overlooking the fact that wresting children from loving parents can look a lot like child abuse. Abuse of power, for sure.