Bringing you my expertise and unique experiences as kidney doctor (nephrologist), former primary care doctor, patient (kidney donor), and someone who loves somebody living with kidney failure, through storytelling.
A few weeks ago, a primary care physician colleague (white man)—who I’ve known for over a decade—sent me the note below by way of our mutual patient’s caregiver (white man) open, not in a secured envelope. In the past nearly 4 years the patient has been under my care, the colleague has not once reached out to me by email, phone, text, tweet, telegraph, or carrier pigeon regarding our patient.
He did, however, reach out to my boss (white man) and a hospital executive (white man) a few months ago when the caregiver (reminder, white man) first complained no one in the dialysis unit was listening to him (though the caregiver has never spoken to me directly about his concerns because, I just learned, he found me “intimidating”).
When I suggested to my colleague that he would not have sent this note (that was not accurate physiologically or even as to what actually happened) to me had I been a white man or if the caregiver was not a white man, he said, “I reject that,” for all the reasons, he explained, he could not possibly do such a thing. Ultimately, he did apologize for sending the note, but then went on to explain how there were some kernels of rightness in how he handled the situation.
Now, I don’t know if this person’s actions were driven by my race or my gender. I don’t know how to separate the parts of myself to pinpoint exactly what drives someone else’s “ism.” But what I do know is all but me are white, all but me are men, and it doesn’t matter which part of me that allowed my colleague to inappropriately, unprofessionally, disrespectfully engage me. Racism. Sexism. The results for me are still the same, whether he is conscious of it or not.
I have felt negativity from my blackness since I was 10 years old, which may have overshadowed my awareness of negativity towards my femaleness. I’ve been followed in stores. I’ve been told by peers and superiors that the only reason I was accepted at prestigious Duke University and Medical School was because I’m a black woman. I’ve been deemed so intimidating that people have gone to my boss rather than directly speaking to me for incidents that others would have had the opportunity to handle themselves.
This isn’t new to me or any other black person existing in this society. One could argue that I’ve been fortunate—I have not been the victim of a BBQ Becky, a Delta flight attendant, or a police officer. Yet this incident and others that have happened since, bother me more than they have in the last nearly three decades.
When I reflect on why this incident has so infuriated me, saddened me, and made me feel that there is no end to this regardless of my education, income, or accomplishments this is what I’ve come up with:
1. To be profiled by a stranger is one thing. To feel like one is being profiled by someone who has known you for more than a decade is another. One would think they could see me through whatever experience they’ve had with me, not by what they carried around in their subconscious.
2. The primary care colleague considers himself progressive, an ally. If an “ally” is unable to even consider, much less accept, that their actions may have been driven by an unconscious bias, then my hopes that we as a society will ever overcome racism are dashed. One doesn’t stand a chance against an enemy if this is the way an ally receives you.
3. This is taking up headspace, attention, energy that non-minorities don’t have to surrender. Headspace, attention, energy that I could be giving to further honing my knowledge in nephrology and to the next scientific research article, research grant, book. One could argue that I shouldn’t be giving my power away in this way. That I should shut all this out and just focus on becoming the person and professional I know myself to be, unrelated to race. I wish I could.
A couple of weeks ago, I was the attending nephrologist for our hospital consultation service when I met Mr. Jones. He had suffered a severe heart attack. His heart was stunned into stillness and couldn’t effectively pump oxygen-filled blood to his kidneys or any of his other parts for the however many minutes it took for the ambulance to get to him and start resuscitation. Once he was transferred to the hospital, the cardiologists successfully reopened the major coronary artery responsible for the attack, but his kidneys weren’t working as well as they had been before. But his kidneys were the least of his troubles. My interaction with his family reminded me of an experience in my own life from about twenty years prior.
My mother and I were 3,000 miles apart when she fell ill. I was a medicine resident in Oakland, California and she was in a community hospital in Fayetteville, North Carolina. She had been increasingly ill for weeks with belly pain and diarrhea. When it got to be too much to bear, she went to the hospital. As the only doctor in the family, it was my job to find out what was really going on and translate the medical speak into regular English. I called the hospital, introduced myself as “doctor” and within minutes had her doctor on the phone.
A colonoscopy revealed near complete obstruction by what appeared to be a mass. A mass like colon cancer. She would be taken urgently to surgery.
I sounded the alarm. Brother and sisters! Get to Mama’s bedside! This was serious.
But once the surgeon got into her belly, he realized it wasn’t a mass at all. Rather, a section of her colon had somehow twisted on itself, tighter and tighter, probably over years, until it strangled itself and died. The dead section was cut out. Healthy edges of bowel were sewn together. Her belly was closed. We all breathed a sigh of relief and in true Grubbs-style Monday morning quarterbacking, my brother berated me for getting everybody so riled up unnecessarily.
Mama wasn’t awake yet when her nurse said we could go see her, but just two at a time. The youngest of her surviving children, a sister and I, went in first. I leaned over and stroked her hair.
“Hey Mama,” I said close to her ear. “We’re here. Everything went well. You’re gonna be alright.” And her lids flittered.
“See, she can hear us,” I said, looking back at my sister.
But when Mama woke up some time later she said, no, she didn’t hear us. She was completely unaware of her surroundings.
I had just attributed meaning to the involuntary jerks of her eyelid muscles. I was wrong.
In my mother’s case, her brain was completely unaware because of the effects of anesthesia. Unlike patients like Mr. Jones, bits of her brain hadn’t been dying with every passing minute after the first five without enough oxygen. Yet families whose loved ones’ brains have spent many minutes without enough oxygen, do the exact same thing I did. They attribute every lid flicker and every finger, toe, hand, foot twitch to awareness, to purposeful movement.
That’s what Mr. Jones’ family did. After five days and he still wasn’t waking up, his family said when they asked him to blink once for yes and two for no, he did, though he didn’t actually open his eyes. One blink. Yes, he could hear them. Two blinks. No, he wasn’t in pain. And to convince us doctors they weren’t just making things up they asked for three blinks. And in hardly no time at all…wait for it…there it was—the confirmatory third blink. Or so they said.
Meanwhile the neurologists had done an MRI and EEG that found things that in their years upon years of experience caring for patients whose brains had similarly been deprived oxygen for minutes upon minutes, unfortunately, sadly, did not ever wake up to a point where they could actually open their eyes and look at things, much less ever, ever get remotely back to the person they were before the anoxic brain injury happened. What Mr. Jones’ family was seeing was just a flitter—or myoclonic jerks in medical lingo.
Yet, still, the neurologists recommended that if the family wanted, it was time to have a tracheostomy done to and a feeding tube placed in the body that used to be the father, husband, brother, cousin, friend they longed for. Next, he could be transferred to a long-term facility full of similar others where their families waited for movements over the years that they, too, would say meant their parent, spouse, sibling, cousin, friend might soon return. I wish instead that the neurologists recommended letting him go because there would be no meaningful recovery. But at least his kidneys were working well enough so that no one was suggesting we start dialysis too.
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…
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.
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.
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!
Happy Re-Birthday Babies!
In celebration of this special day, if you haven't already signed up for updates, please do it now because I'll send an autographed copy of my book, HUNDREDS OF INTERLACED FINGERS, to every 13th person (up to 13) who does!