Who Can Speak for the Patient? A Guest Post by Jessica Nutuk Zitter, M.D.
Our patient was never going to wake up. He had an unrecoverable brain injury. The prognosis had become clear over time. As the patient’s attending physician in the intensive care unit, I arranged a meeting with his sister, the only visitor we’d seen for days, and explained. She was resolute. “He’ll wake up,” she said. “He’s a fighter. Do everything you can to keep him alive.”
The next day I told the social worker what the patient’s sister had said. “What about the wife?” the social worker asked.
That was the first I’d heard of a wife. A spouse is the official next of kin. No decision should ever be made without the spouse. But I hadn’t known she existed. I discovered that she visited the patient after her work shift, usually at 8 p.m. By that hour, our team was gone. The doctors on night duty were on for emergencies, not conversation. And so she was invisible to us.
How could we have missed this most basic and vital piece of information? It’s easier than you might think. The sister didn’t get along with the wife and apparently wasn’t moved to tell us of her existence. The social worker had been out sick, and his replacement assumed that we knew. And we had a concerned sibling at the bedside who fulfilled our mental checkbox for who makes an acceptable surrogate decision-maker.
We hastily called a meeting with the wife. She arranged to leave work early, and she met us in our conference room. Feeling a combination of shame and relief at the averted disaster, we apologized for not being in touch. We didn’t mention that we hadn’t even known about her.
She was shocked by our grim prognosis. Angry. But then, with resolve, she stepped into her role as decision-maker. He would never want to live this way, she said. His father had suffered a devastating stroke years ago and her husband had remarked several times, “Don’t keep me alive if I’m like that.” She wanted to bring him home immediately with hospice support. Another day in the I.C.U. would have gone completely against his wishes.
As Dr. Atul Gawande described so beautifully in his book “The Checklist Manifesto,” checklists improve medical care. I use a variety of them on my daily I.C.U. rounds. One assesses each organ in the body, moving systematically from nose to toes. Another evaluates settings on the breathing machine.
By systematizing my approach, I’m confident that I’ll always remember the many different steps involved in treating a patient with cardiac arrest. I’ll be more prepared to start tube feedings or begin to wean the patient off the ventilator when the time is right.
But despite my checks and balances, I had almost allowed the wrong person to make crucial decisions for this vulnerable patient. And I had nearly excluded a wife from her rightful place on her husband’s team. Missing this crucial piece of information would have caused far more suffering and damage than any miscalibration of a ventilator.
I realized then that I needed another checklist, one that puts patients, and not just their organs, in the center. It would account for the human needs that we weren’t always taught to prioritize, ones that didn’t seem fatal if overlooked — clearly identifying the patient’s next of kin, communicating with the family and identifying the goals of care, asking about symptoms like pain, delirium, shortness of breath. My critical oversight would not have happened had I sought out the social worker on the first day to confirm the true next of kin. He thought I knew. I thought I knew. We both were wrong.
Now, years after that incident, I use my patient-centered checkliston every critically ill patient I see in intensive care. After I go through the cardiovascular system, the pulmonary system, the kidneys and the ventilator settings, I turn to the presenting resident and say, “Now let’s do the patient-centered checklist.”
I have never since misidentified a surrogate decision-maker. And I know that I am doing a better job at managing my patients’ symptoms. A checklist that addresses the human needs of a vulnerable patient is as crucial as those that deal with his organ function. After all, care is about the whole patient, not just his parts.