Every single night in the ICU, I am shocked by the number of people who have never discussed with their family what they would want done if their heart stops beating. Whether they would want to be shocked out of a bad rhythm. Whether they would want CPR, chest compressions, bones broken in the process. What they would want if a catastrophic illness were going to take their life, or an anoxic brain injury, which is what my father had, the brain starved of oxygen until the person left is not the person who was there.
So the conversation happens at three in the morning, in a hallway, with me. A stranger in scrubs, asking a family the biggest question of their lives on the worst night of their lives, hearing it for the first time. After more than a decade as an attending, it does not get easier to witness, and in the absence of clear decision-making the default is always the same: Do everything. Every shock, compression, intubation, injection, or mechanical restraint, whether or not that is what their loved one wanted.
I got to live the other version. Twice.
We did my mother’s POLST during one of her six or seven hospitalizations in the six months before her transplant, as a requirement of pre-transplant care. It got tucked away in the chart, nearly forgotten in the flurry of decisions. What surprised me most was her not wanting her ashes scattered in the Ganges, unlike my father. To ease the bite of such heavy concepts amid such serious disease, I did my own. Both documents were filed away to collect dust. But the memory of the discussion, and the clarity about comfort and dignity in the last phase of this life, persists.
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She told me plainly what she would accept. She had watched her brother die unexpectedly in an ICU after a two-week course, unable to talk around the ventilator tube, poked and prodded, tied down at his hands and feet. She found that an unacceptable level of suffering, and said so before it came to matter. Her limit was specific: A breathing tube was acceptable, but only as a time-limited trial, five days, a week at the absolute most. Not her brother’s two weeks. So when ARDS came unexpectedly twenty-four hours after her transplant and she was so worn down by the sheer labor of breathing that she looked at me and said, “please put the breathing tube in me,” I did not have to interpret anything. I knew exactly what she was requesting, and for how long. The moment the tube went in, an internal clock started in me, set to her limits, though I feared her lungs would need more time than she had authorized. That was the conflict I carried through every day of her mechanical ventilation: the daughter counting days against a promise, the doctor watching a disease that does not read documents. Her limits did not expire when the calendar passed them; they made every additional day a conscious decision, one that rested heavily on my chest and made it difficult to fully breathe as the days went by. At three in the morning on the worst nights, I was never guessing. She had already told me.
My father was specific in how he wanted to go: at home, with his two-year-old granddaughter kicking him to the afterlife. An expression that if he must go, he is pushed out by the person he loved most. His words, not mine. When his cardiac arrest came and the seventy-two-hour wait confirmed the anoxic brain injury that took away who he was, I did not have to guess. I took him home and laid him down on a bed of petals my children arranged from our own garden. Then, as prophecy would have it, my profoundly disabled son, in his ataxia, stumbled and fell on him. In palliative care’s presence, I pushed his comfort medications myself. I was the first to carry him from the diagnosis, through his courageous fight with lung cancer, and the first to let him go to a place where I could not follow. His death rattle became part of his normal passage to the afterlife, witnessed by everyone, including his grandchildren, on his bed of roses, his throne to carry him there. This is how he envisioned going, and this is what I, as his daughter, an anesthesiologist, and an intensivist, was able to deliver. It gave him the way he wanted to go, and it gave me the only control I ever had against his brutal, short-lived cancer. I will grieve that week for the rest of my life, but I have never once had to wonder whether I did what he wanted. Ask any ICU doctor which families suffer most in the aftermath of a death in the ICU: the ones who lost someone unsure of what their loved one would want. They are riddled with the compounded grief of wondering whether they did the right thing, whether they honored the person as they would have wanted.
So here is my request. The form is not what matters. The talk is. Have the conversation that plants the seed. Give people time to figure out the details, and return if you must. Ask who would step in. Ask whether they would have the strength to honor the wishes, even when honoring them is the hardest thing they will ever do.
So to my colleagues: Ask the question upstream. In clinic. At the heart failure follow-up. Anywhere that is not an ICU hallway in the middle of the night. And to everyone else, because every one of us is somebody’s daughter or son, have the conversation this week. It takes twenty minutes at a kitchen table. It is among the most important things you will ever do for the people you love. I know, because it was done for me, twice, and it is the reason I can live with how both stories transpired.
Ayonija Maheshwari is an anesthesiologist and critical care physician who has practiced in the United States and New Zealand. She writes about patient safety, caregiving, and the human side of medicine, drawing on a double vantage point: years at the head of the bed, and her mother’s seventy-one days in the ICU after a heart transplant, lived from the chair beside it.
She is writing a book, Have You Seen Your Mother’s Chest X-Ray?, and shares her work on Substack and LinkedIn.
