A Dying Man and Sophie's Choices

John Carney
February 2, 2010

I want to express my sympathies to Alicia on the death of her father. I’d also like to extend my apologies to her and posthumously to him – for making them responsible for decisions that should have never been theirs to make.

Dying is hard enough work for patients and families without our making it harder by throwing every mechanical obstruction we can in its path. That is not the art of medicine, it is technological abandonment. He died tethered to machines, she supposes, because he chose to.

Is that really true? We in health care conspired to allow his dying a death unimaginable a few decades ago. It was not only a “mistake” as she suggests, but it was preventable, for it is not a dying man’s job to make Sophie’s choices.

We are not allowed to torture a beleaguered soul out of a false notion of patient self determination. When a medical intervention cannot serve the purpose it was designed for, cannot approximate an acceptable standard or achieve a goal of care we should not impose it.

We have no obligation to offer, recommend or even suggest care that patients cannot benefit from, and we should avoid putting patients on “mechanical paths to death.”

At some point, supporting this daughter and her father requires that we face the inevitability of his dying with them, compassionately, honestly and ethically. Yes, it would have been wrong of her to tell us that he didn’t want to be intubated when he did, but that decision should not have dictated all others.

It was her job to tell the truth when asked about her father’s treatment preference - especially given that particular intervention’s success previously. But it is our job to ensure that we honor preferences in meaningful and reasonable ways.

We are obliged to offer patient centered care, not patient directed care. Prolonging his dying six months served whom? Autonomy run amok is as disrespectful of the patient as is paternalism.

Yes, Alicia, your role was to support your father, and our role was to support you. You may have upheld your part of the bargain, but unfortunately we let you both down by allowing our “support” to create unforeseen burdens while misusing valuable resources in the name of acceptable.

Link: An Ill Father, a Life-or-Death Decision, Alicia von Stamwitz, New York Times
January 25, 2010