A Doctor Needs to Know Who Has End-of-Life Say

“I just want to be clear on who has the final say on life support.”

The words cut neatly through a conversation which has barely moved beyond my perfunctory knock on the door frame of your hospital ward room. They don’t come from you—how could they? Unlike your drawn-out, mumbled monosyllables, they are brittle with impatience, as though they are responding to the folded-up patient list in my back pocket. “Clarify goals of care and resuscitation status,” it says, circled and underlined next to your name, your age, and your incurable disease. It means that I am going to ask for permission to focus on comfort and dignity instead of scans and numbers. I will go beyond asking, and will recommend this approach. The words that are still ringing in the air? They tell me we are going to disagree.

I pause, not because this situation is uncommon but because it is easier to let my gaze linger on details than to face the difficult conversation ahead: The woman sitting silently next to you, playing with a wedding band too large for your chemotherapy-thinned fingers. The scar on your head where, during more hopeful days, your surgeons tried to remove the part of your brain that is now going to kill you. The toy lion nestled next to you, guarding you on behalf of your children who are “too young to visit.” They all scream the unfairness of your presence in this room.

Ashamed at delaying, I turn to your older sister. The spoken words were hers, and she is now defiantly holding my gaze, ready to record my answer in the open notebook in her lap. She knows unfairness intimately, and I am part of a now-familiar pattern. Your surgeons will not operate again. Your oncologists will not try more chemotherapy. Your neurologist will add no more medications for the seizures that will come back and possibly never stop. I do not think that you would benefit from “resuscitation” or “life support.” Unlike the others, however, I can be forced to provide them. The purpose of your sister’s words is to “be clear” that she knows this....I am angry at a health care system that has left you and your family feeling lost, suspicious and defensive. I am angry at a legal system that has tried to solve this problem by giving you, and by extension your family, apparently unlimited power at the end of your life without warning you that it is mostly the power to choose more suffering. It is a toxic combination.

Vlad Dragan I Just Want to Be Clear on Who Has the Final Say on Life Support