I am not going to comment on whether the court is right or wrong in ordering the removal of ventilator support (but not food and fluids) from a catastrophically brain damaged baby—over his mother’s objections. (The child appears to have been abused.) But if there are times in which parent/family/patient desires to continue life-sustaining treatment are to be vetoed, the proper forum for such morally consequential decisions to be made is the courts—with the burden of proof on those who wish to remove care and an attorney made available to the family so that the fight is fair. In no case should the power to make decisions to remove wanted life-sustaining treatment be assumed by anonymous hospital ethics committees, doctors at the bedside, or other private parties with no public accountability—as is beginning to happen in hospitals throughout the country.

The mother in this case had the right to present evidence. The litigation is very public. The record can be reviewed. There is a right to appeal.

This is in direct contrast to Futile Care Theory (a.k.a. medical futility), in which decisions to withdraw or withhold wanted treatment are made by doctors and committees after private hospital administrative hearings. Then, if the committee votes to stop treatment, the onus to act is on the patient/family. Indeed, once futile care has been imposed, families have three difficult choices: acquiesce and most likely lose their loved one; find a new hospital, which isn’t easy because these disputes involve expensive care; or, bring a lawsuit on their own dime, and as plaintiff, probably shoulder the burden of proof.

Futile Care Theory is a clear and present danger to patient autonomy and the equality of life ethic. It is a form of ad hoc health care rationing that is being quietly promulgated by many hospital ethics committees throughout the country with little public debate. (We don’t even know how many hospitals have these protocols or their ideates in many cases.) This presents a clear and present danger that when it comes to the dying and the catastrophically injured, advance directives and family desires will be forced to take a back seat to the ideological beliefs and values of people who may never have even met the patient.

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