First it was Charlie Gard, the baby dying of a progressive genetic illness in the U.K. whom doctors and courts both forced off life support against parental wishes — and barred his parents from taking him to the U.S. for experimental treatment.
Now, it is Alfie Evans’s turn. The 19-month old boy fell into a profound cognitively disabled condition almost a year ago — news reports use the term “semi-vegetative.” Alfie’s doctors insist on turning off life support. His parents disagree.
Adding to the stew, doctors have not been able to diagnose a cause for his cognitive collapse — plus, an Italian children’s hospital is willing to continue treatment. Alfie’s parents want to transfer him there. One would think that is a reasonable decision.
But no. Doctors went to court to impose their will. They contend — and U.K. courts agreed — that Alfie’s “best interests” are to die now, rather than continue to live in a profoundly disabled condition.
The European Court of Human Rights has refused to intervene. Case closed. No legal options remain for the parents. Unless he suddenly responds, Alfie won’t see his second birthday as the hospital is going to remove his life support: From the BBC story:
Alder Hey Children’s Hospital said: “This signals the end of a very difficult and protracted legal process.
“We understand that this decision is very distressing for Alfie’s family.
“Our priority is now to work with them to agree the most appropriate palliative care plan and we would ask that their privacy is respected at this time.”
I’m sure the parents appreciate their understanding! Too bad their privacy to make care decisions on behalf of their son didn’t receive the same respect.
This dispute involves an emerging policy pushed in bioethics called “futile care” or “inappropriate care.”
The idea is that when a patient or family wants to refuse life support, that decision is sacrosanct. But if they want to keep it going because the treatment is successfully keeping the patient alive — well, choice has its limits. Even though such decisions represent values rather than medical judgments, doctors, hospital bioethics committees, and/or courts have the final say.
I know of many futile-care impositions in the U.S. — including on babies — but have never heard of a case in which doctors prevented the patient from being transferred. Indeed, laws authorizing futile-care impositions generally allow patients/families a period of time to find alternative care.
But, if doctors and bioethicists get to decide it is in the “best interests” of a patient to die sooner rather than later — even when the patient specifically requests to remain alive — by what logic should they also not be able to decide whether to permit a transfer?
The reason has to do with power. We are witnessing a steady and growing imposition of technocracy in medicine, where “experts” define the parameters of care. This is a form of health-care rationing, potently dovetailing with utilitarian ideology and the need to impose cost controls.
The U.K. is simply farther down that road with its socialized medicine than we are in the U.S. But don’t be surprised if sometime down the line, we start to see Alfie Evans–type cases begin to pop up here.
Cross-posted at The Corner.