Feature: Live or Die, Khatami
Mr. Khatami* was a 70-year-old Indian man with decreased mental status secondary to a large, left-sided stroke. The patient, a veteran, was homeless and using cocaine at the time of his stroke. He had been nonresponsive for the last 6 weeks, only able to occasionally glance around the room, and given a poor prognosis for any recovery of his mental status by the neurology service. The patient had a nasogastric tube and was recently extubated. He had active tuberculosis and was breathing with supplemental oxygen; he seemed uncomfortable. He had bed sores in addition to sores above his ears where oxygen tubing had been for the last month and a half. He wore a diaper and had a urinary catheter in place.
I'd never felt conflict on so many intellectual levels before. I didn't want my patient to die, or suffer. I didn't want the minutiae of the law to keep me from doing what was right or to let me do something I felt was wrong. I didn't want to burden our health care system with futile procedures, and I didn't want to lose my heart. The way I was thinking finally hit me—I was focused too much on what I didn't want because I was afraid of the consequences. I needed to figure out what I did want.
This experience created a sense of fear that I had never known-and I was enjoying the challenge. I wasn't afraid of making a mistake, getting sued, or receiving a bad grade. I was afraid of how easy it was not to think about the choice in front of me. I had just stepped into a gray area of medicine where being a passive provider was still somewhat passable. I could easily still get an MD after my name by letting social work handle this issue while I studied diabetes medications instead. I was never going to be a physician, however, unless I struggled through this.
Should my patient be kept alive or be allowed to die? He was no longer able to guide us and was estranged from his family (save for one son who hadn't seen or spoken to him in 15 years). Having just seen my grandmother be painfully kept alive with no advanced directive, I knew I wouldn't want to go on like this. The hardest part, though, was to decide what Mr. Khatami would have wanted. He was clearly in pain at the moment, but pain passes. The guiding principles of beneficence and nonmaleficence became decidedly blurred. One could make an argument that removing his NG tube was maleficent, just as keeping this patient in pain with no recovery was harmful. Normally, a patient's wishes would provide clarity; beneficence with end-of-life care remains in the eye of the recipient. Would Mr. Khatami want to go on living like that?
It's astounding how much further technology has come than ethical comprehension. Incredibly complex brain surgery was done while the Tuskegee syphilis experiment was conducted. In many ways, we are like kids who can memorize and recite the entire constitution without understanding its true implications. My favorite move in academic medicine thus far has been an attempt to cut down on excessive testing (that is, ordering a D-dimer test less frequently). Still here, ethics has continued to lag behind. In our "what if" ethics of medicine, many people try to control every obscure scenario imaginable, even if it ends up deleterious towards the care a patient would most likely have wanted.
The true dichotomy was that this patient could either live in suffering, or be let to die in relative peace; he could not do both. I liken this challenge to a differential diagnosis. In medicine, a diagnosis becomes the most likely explanation, given a physician's knowledge, experience, and personal perspective. I had always thought that ethics would be like they were when I was growing up, with a right and a wrong answer and a clear choice to make. Unfortunately, there were no villains dressed in black on the floors that day. We were going with our "best guess". Like any diagnostic test, we were going to be wrong a small percent of the time.
For me, advocating for my patient meant pushing to forgo life-prolonging procedures that would cause him undue discomfort at no real added benefit. It meant fighting for decisions that were going to shorten his life, something I'd come to grips with intellectually but never thought I'd have to do, especially not my second day on the job. Not surprisingly, even within our team there were disagreements, as everyone had different perspectives and experiences. In the end, the decision was made to bypass painful testing to work-up the patient's stroke and move toward giving him morphine to improve his quality of life. Not just a team of providers but people hoping for the same depth of concern if the situation were reversed, we agreed that this choice was best.
I spoke to Mr. Khatami on the last day that I saw him, as I did every morning. Though I'd never gotten a response, I did feel very close to him. When I was ready to leave the room, I held Mr. Khatami's arm and looked at the man who had helped us all grow so much one more time. My only feeling was hope, that we had done the right thing. The feeling faded and was replaced with anxious excitement at the prospect of our next diagnosis as I stepped into the next patient's room.
Mr. Khatami died 10 days later.
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Patrick Olivieri |
*Name and identifying references have been changed to protect patient privacy.