It’s not bad enough that Charlie Gard’s parents have been told by courts that doctors can take their son off of life support without consent, and also, they can’t retain other doctors to take over his care.
But Chris and Connie have put up a hell of a fight for their son — generating support around the world — and that can’t be allowed to happen again. At least, not if George Gillett, a medical student, gets his way.
Writing in the British Medical Journal, he wants the laws further tightened to keep parents from daring to defy doctors by establishing rules to determine when parental autonomy will be suspended based on their supposed lack of “capacity”:
However, what a capacity-based assessment of parental autonomy would do is introduce some consistency in the law, and provide a far more sophisticated and ethically justified approach than the one we currently have.
It would be honest with parents about when they have a right to make decisions on behalf of their children and when they do not, rather than offering parents the façade of parental autonomy before selectively over-ruling the decisions doctors disagree with…
Only once we’ve clarified our own attitudes towards parental autonomy can we begin to effectively communicate decisions to patients, their families and the wider public. Until then, our collective doublethink surrounding parental autonomy will only contribute to greater uncertainty.
Coercion to die should have no place in medicine. It sows greater distrust than already exists and has the potential to generate a dangerous rage — I’ve seen it — by parents or family against doctors who they believe killed or caused their loved one’s death.
Such authoritarianism might not be limited to decisions about withdrawing life support, but could one day also include include sick babies being lethally injected without consent:
The year is 2040. After years of campaigning, the UK introduces its first assisted dying legislation. Active euthanasia is legalised for those suffering from a terminal illness and a number of patients make use of the legislation in the following months.
A few years later, a baby lies in a London Hospital, trapped in a bitter dispute between his parents and doctors. He lives with a terminal illness causing some pain, but doesn’t require ventilation or life support.
His doctors believe it in his best interests to die, and to his parents’ horror, recommend that he should undergo active euthanasia to alleviate his suffering. The courts rule in favour of the doctors’ judgement and prevent the parents from removing their child from the hospital. The baby dies by lethal injection a week later
That kind of thing happens in tyrannies, not free societies.
But Gillett is right. If we increase doctors’ authority in the way he envisions over what are essentially value judgments rather than medical determinations — e.g., whether the quality of life is worth living — we could well end up with babies (and others) being non or involuntarily euthanized based on the doctors’ views about their quality of life.
Be warned: This kind of thinking is pretty typical — if not universal — in utilitarian bioethics. And it illustrates why we must never allow a medical ”expertocracy” to rule over whether our lives are worth living.
Update: I have added the words, “to die,” to modify my statement, “Coercion has no place in medicine,” since apparently some didn’t understand — or ignored — that circumstance as the clear context of the Charlie Gard case and the column arguing to expand physicians’ authority over parent autonomy quoted in this post. The more literally minded have brought up extraneous concerns, and so I added the modifier to assure clarity of subject.
Update 2: I have heard from Gillett, who says he would oppose the involuntary baby euthanasia hypothetical scenario, if such killings were legal. He also believes I have misread his meaning generally. I don’t think so. But if you are interested, you can check out our polite exchanges on Twitter @forcedexit. More to the point, these “who gets to decide” type issues — and the potential power of the bioethical expertocracy with which we are threatened — transcend national borders.