Readers may recall the Charlie Gard and Alfie Evans cases from the U.K. — in which doctors both wanted to remove life support and prevent the children from being transferred to other hospitals willing to continue care. Because the law in the U.K. permits courts to decide the “best interests” of children in medical extremis, the MDs got their way.
Now two-year-old Alta Fixsler’s parents are facing the same cruel “heads we win, tails your baby loses” utilitarian authoritarianism. Alta was born prematurely and is seriously disabled. The doctors sued for permission to remove life support. She and her parents are Israeli citizens and despite an Israel hospital being willing to accept her care, the U.K. courts have ruled: “No! You can’t move her and you can’t keep her alive.” From a column in the Washington Post that describes the facts of the case accurately:
Royal Manchester Children’s Hospital, where Alta is currently being cared for, told Alta’s parents that their daughter should be taken off life support and allowed to die. Doctors, they were told, had decided that Alta, tethered to a ventilator and requiring a feeding tube, was experiencing pain and had no quality of life.
“Quality of life” is not a medical determination. It is a value judgment. That being so, it should not be “up to the doctors to decide.”
In “futile care” cases such as Alta’s, maintaining life when that is what the patient/family wants is redefined into a harm:
Although a number of pediatric neurologists disagreed with Royal Manchester’s contention that Alta was in pain, the hospital physicians petitioned the British High Court for permission to remove her life support.
In June, the court acceded to the hospital’s request. Justice Alistair MacDonald ruled that, even though Israel was prepared to accept Alta, taking her abroad would expose her to further discomfort “for no medical benefit,” and that moving the child would “expose Alta to further pain and discomfort.”
“It cannot be said to be in Alta’s best interests,” the justice explained, “to be transferred to Israel for life sustaining treatment to continue.”
This, even though there may be treatment options in Israel or the U.S. — the U.S. issued a medical visa to Alta to come here for care — that may not be available in the U.K. The parents have petitioned the U.K. Supreme Court for a hearing — but that is the same judicial body that ultimately doomed Charlie and Alfie.
It’s not just the U.K. The U.S. has seen similar cases, albeit that usually, the doctors don’t try to prevent transfer. But the Tinslee Adams case in Texas is strikingly similar.
Tinslee is a baby with a critical heart condition who was expected to die within weeks. Doctors and a hospital bioethics committee claimed continuing treatment only caused her agony and, hence, was not in her best interests. When Tinslee’s mother refused to end life support, a hospital bioethics committee ordered life-sustaining treatment ended — as allowed by Texas’s odious futile-care law.
But rather than cooperate in her transfer after an out-0f-state doctor agreed to take her case, the hospital prevented Tinslee from having the tracheotomy required to let her be moved and fought against the transfer of responsibility. She has had the surgery now, but as I understand it, that window of opportunity for transfer is closed, at least for now.
Tinslee’s mother obtained an injunction against removing life support, which the hospital fought all the way to the Texas Supreme Court. The trial will eventually decide whether Texas’s futile-care law is constitutional.
Defeating futile-care bioethics authoritarianism — sometimes called “inappropriate care” — is crucial to protecting patient autonomy and preventing a medical regime in which the “quality of life” ethic of bioethicists and the medical establishment prevails over the moral values of patients and the Western belief in equal human dignity.
The time has come for a formal study of Texas’s futile-care cases to be undertaken, because, off the top of my head, most of the fights seem to involve patients on Medicaid — often people of color. If so, futile care could actually be a form of medical discrimination masking as a high-brow bioethics theory.
Here’s hoping that Alta and Tinslee do not suffer the same fate as Charlie and Alfie. Not just for their sakes, but if futile care ever becomes unexceptional — like removing feeding tubes from the cognitively disabled has — the most seriously ill patients won’t be the only ones kicked out of the lifeboat.