“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 feel a flash of anger.
Not at your sister—she is acting out of love, and suffering. You have been close all your life, and she’s the person you’ve always turned to in a crisis. She has waited with you for results that define failure in millimetres of growth, has watched you lose weight, and strength, and hope. She could not fight the clumps of your cells that are dividing unchecked, so she shifted her focus to the health care system. It has cost more tears and grief, but she speaks its language now, can navigate its bureaucratic maze, and has advocated for you to receive every possible chance.
Not at your specialists either, though some argue that they should bear a greater portion of the responsibility for this moment. Blaming them is unfair. They have tried to explain what focusing on your quality of life means, tried to prepare you and your family for this decision, and their distress at failing to do so is apparent in the language of their consultation notes. Still, I am jealous of them: They are allowed to stop hurting you, while I am not.
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.
And so the next few words feel crucially important. I hope that I can find the right ones, that they exist. It is customary here to pretend that you are participating in the conversation, awake enough to hear me.
How do I describe the moment your heart stops? “Resuscitation” is too sanitized; the process is violent and messy. It means putting my body-weight on your chest and pushing, hard and fast, maybe while your ribs crunch underneath my hands. It means inserting (shoving?) a plastic tube down your throat to make you breathe, maybe while your whole body is wracked with seizures. Electricity will charge in a high whine and shoot through you with a wet smack. I will record every minute of it in your chart, and it will feel like eternity.
Your heart may restart. What comes next is called “life support,” which seems a cruel joke. It is more tubes, piercing your skin and tethering you to machines that try to imitate the organs underneath. How can I adequately explain the cost? In a few short days it will be clear that our “life support” is rudimentary, like restoring a tattered oil painting with tape and crayon. Your body will revolt against the tubes, and we will sedate it. Infections, pain, the vicious cycle of side effects and complications, all will become commonplace. Can you picture what days or weeks of this will look like? Some people leave the tubes behind, or integrate them and continue to live fully and meaningfully. You will not. Your body will melt away while your family watches, and your medical team circles back over and over again to this conversation, re-hashing the same pain, and guilt.
My words are not enough. You would cherish every minute you could spend with your family, your sister says, even if you were unconscious and attached to a ventilator. Perhaps she is right. And perhaps your family has sacrificed so much for you that you would feel too guilty to say no to the tubes now.
You and your family can make me do this to you. And I promise, solemnly, that I will do it to the best of my ability. But I dare anyone to look at your body after I have hurt you and tell me that this is why I took those oaths at the end of medical school.
I wish I had more answers for you, and more solutions, but I do not. So I look your sister in the eye, and smile. I tell her I want more than anything for us to agree. But in case we do not, I say to her, yes, she can ask for the tubes.
The patient described in this piece is a composite of several the author has met.