irrelevant words matter


It was Friday afternoon and the last patient of the clinic day had arrived. A new patient to me. While the medical assistant asked her screening questions (Do you smoke cigarettes? Do you have pain? Have you fallen recently?) and checked his vitals (blood pressure, heart rate, weight), I started to get to know him through his medical record. I began with the clinic referral to find out why he was in my clinic in the first place. Would I be figuring out why he had an electrolyte problem (like low potassium levels) or thousands of grams of protein in his urine (when normal is less than 30 milligrams)? Or would I find the usual, a case of irreversible kidney damage caused by high blood pressure and/or diabetes? The first line read: 70 year-old formerly incarcerated man with recent hospital admission for…


Formerly. Incarcerated.


I had to go back and re-read these words. They gave me pause. They took me back to my days as a resident physician when I was involved in a case so interesting the details of it were spoken and written by doctors from several different teams. Perhaps more interesting, I don’t remember what unusual diagnosis the patient had, but I do remember feeling an overwhelming darkness every time I entered the patient’s room that extended beyond the closed blinds and low fluorescent lights. I remember greasy-appearing strands of black hair behind a receding hairline that grazed his shoulders. Thick black-framed glasses magnifying dark, murky eyes above a dour, thin-lipped mouth. His large frame ominously hunched in the hospital bed. And I remember how each and every one of us started the case presentation: This is a 54 year-old pedophile presenting with….




One could almost feel the tightening and shifting—and judging—happening within every young doctor hearing this word. Then a senior doctor spoke.


“Why are we hearing about what he did? It has nothing to do with figuring out his diagnosis. All it does is bias how we think about him,” she said.


A stunned silence fell over the room. Or maybe it was just an ashamed one. Or a bit of both. I don’t remember what broke that silence and allowed us to move on to a clinical discussion of the case, but I do remember no one mentioned his pedophilia again.


I walked into the exam room where my new “formerly incarcerated” patient sat, his mouth thin-lipped and dour. His mouth reminded me of my patient all those years ago. And as I talked to my new patient as if I hadn’t read those words, I was struck by how his mouth softened and spoke openly. Like a mouth not being judged before it opened.


I have found that doctors can take extreme offense at the suggestion that we could be biased in any way. That our scientific minds could somehow be swayed by our humanness. Or how we engage patients might factor into how they interact with us or follow our medical advice. But how could it not?


This is why when I wrote my note about my new patient’s clinical problem in his medical record, the words “formerly incarcerated” were not included. Those words had nothing to do with the kidney problem I was supposed to help him with. Those words could only serve to make others prejudge him in ways that maybe they weren’t even conscious of.


For the very same reasons, I did not include his race either.


the ethics of the right care

Julie* was 22 years old, but she looked like a frail frightened 13 year old curled up in the hospital bed. She spoke like a petulant one.


“I don’t want to be here! I want to go hang out with my friends!” she yelled when I asked her what she wanted for her care. I was in her hospital room as a representative from the Ethics Committee, my goal to help relieve the conflict between her and the team of doctors trying to take care of her.


Julie had been admitted for endocarditis, a life-threatening infection in the heart. Again.


Last summer she had the same thing. Injecting drugs with contaminated needles will do that. Then the cardiac surgeon replaced the infected heart valve, but she never completed the appropriate amount of antibiotics because she decided to leave the medical respite (a place for homeless patients in need of care that could be given at home to live) early. And she never stopped injecting drugs.


I was prepared to spend a half-hour or so talking to Julie, but after about ten minutes, I was dismissed.


“I’m done talking to you,” she said, her arms crossed at her chest, her lips pursed. “Bye.”


After leaving Julie's room, I reviewed her medical records and read how she had been refusing antibiotics that were scheduled to be given three times a day.  After some cajoling, which I imagined involved quite a bit of nurses’ and doctors’ time along with pretty pleases and cherries on top, she would usually allow the rest to be infused later. I talked everything over with an Ethics Committee colleague then called the resident physician who requested the Ethics consult.


The resident was suffering from moral distress. She wanted what was best for Julie, but was willing to settle for having her get IV antibiotics for six weeks.  The medical team was considering discharging her to a skilled nursing facility, but that was unacceptable to Julie because it wouldn't allow the freedom she wanted.  And because the team knew what Julie’s freedom meant, they were also considering petitioning the court for medical probate. This would allow them to detain Julie for necessary medical care because Julie didn’t have the capacity to make rational medical decisions for herself. They were reluctant to take this second route, the resident said.


Yet I could hear the sharp inhale of disappointed disbelief in her voice when I gave the Ethics Committee’s recommendation: Discharge the patient to medical respite for intravenous antibiotics.


“We just thought if we could get her through the antibiotics, she could live another year. Without them, we don’t think she’ll even make it a year. She’s like a 7 year old. We wouldn’t let a 7 year old make the decision to not get the antibiotics to save her life.”


Her reaction told me that she just wanted our blessing to do what the team really wanted to do to begin with, thus alleviating the guilt that comes with forcing treatment against someone’s will. I understood her distress.  She wasn’t unusual. Doctors tend to overestimate our power to save lives. Even those who aren’t interested in being saved.  We seem to forget that their lives are not labs where we can control all the factors. We forget that we can’t erase free will.


I agreed the patient didn’t have the mental maturity to make a rational adult decision. And sure, we could justify making the “right” decision for her. But to what end? Would we tie her to her bed and sedate her to be sure she didn’t refuse the full antibiotic infusion or, worse, pull out the PICC line that allowed them? For six weeks? Didn’t sound very ethical to me.  


When it comes down to it, I don’t think the resident or any doctors who find themselves in situations like these are really thinking about the un-save-able patient. We’re thinking about ourselves and our need to do “everything” we possibly can do to make ourselves feel better. To absolve our own consciences. Because the truth is, we wouldn’t let a 7 year old go out and inject drugs either.


*name changed for privacy

13 years and counting!

Thirteen years ago today, I gave my left kidney to Robert Phillips—a decision I've never regretted. We continue to share the same two healthy kidneys between us!

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