In many futility cases, the surrogate is requesting aggressive measures that the patient would not choose for herself. Yesterday's New York Times illustrates the more difficult type of case. The article is a first-person story by a surrogate who wanted to forgo aggressive life-sustaining treatment for his chronically critically ill father. But he instead instructed providers to provide those measures, because he knew that his father would want them. He was a good and faithful surrogate. Nevertheless, both he and the providers clearly considered the treatment inappropriate.
I know what I want: I want to stop the insane cycle of hospitalizations and heroic life-saving treatments. It is not helping my father. He is getting sicker. He is dying. And I am exhausted beyond belief. I have no energy for family or friends, and my career has suffered. I want my life back.
I am acutely tempted to answer, “Of course not — my father would not want heroic measures.” But I hesitate because I know it might not be true. In the past, he has wanted everything possible done. This night is different, but I do not know if his answer would be different. . . .
Finally, I say out loud the only thing I know to be true. “In the past, my father has asked that everything possible be done.” . . .
One nurse grunts and rolls her eyes dramatically. The other mutters, “Oh, brother — here we go again,” and shoves a stainless steel instrument cart closer to the gurney. . . .
What the doctor and nurses do not know, what I hesitate to admit even to myself, is that I almost gave them the answer they wanted: the reasonable one. But I would have been terribly wrong.
My father never really recovered. He could never again breathe without a respirator, he never left the hospital bed, and he eventually needed dialysis and a feeding tube. Six months later he died of heart failure.
I suppose my father’s decision was a mistake. But it was his mistake to make, not mine. My role was to support my father, no matter what, and to tell the truth, no matter how hard.