Hundreds of Interlaced Fingers

by Vanessa Grubbs, M. D.

  “She wants to do a project to show that the transplant system is racist,” he said with a roll of his eyes in my career-planning meeting with senior faculty in the division.

  “No, I don’t!” I protested.

  But maybe I did. Because that is how it felt to Robert and me. It felt racist as he sat in his dialysis chair year after year as Whites left for transplant but those who looked like him didn’t. It felt racist to me because all the reasons given to explain the racial and ethnic disparities in kidney transplantation, like not being referred for evaluation as early as possible or not enough insurance or social support, were issues that tended to disproportionately affect the poor and people of color. Issues that could be overcome at a system level. Had these problems prevented some of those deemed most worthy from getting kidney transplants, I believe the system would have found a way to overcome them.

  Just like it did for dialysis.

  But regardless of what I felt or believed, if legitimate research found that a system marginalized a specific group of people in a way that was detrimental to their health and well-being, then it should be revealed. And then the system should be changed.

  Nevertheless, soon after that group meeting, Yin said to me alone, “I will not support you if you continue in this line of research.”

  One cannot launch a successful research career without support. I felt silenced.

  “I don’t like the way you approach research. It seems biased,” Yin said a few months later. Two years had passed since our initial meeting and I sat on the other side of his desk in his new office with a window and twice the square footage of his old one.

  I had grown to expect such blunt statements from Yin. His way was to walk through life ripping Band-Aids off without so much as a count to one so a person could brace herself. No beating around bushes. No sugar-coating. I actually liked this about him very much. I found it to be a time-saver, but on this particular occasion his blunt statement left me taken aback.

  “I can’t help the way that I see the world,” I responded. I probably would ask different research questions if I weren’t Black or had different experiences, which is the very reason why it is important to have people from different backgrounds doing research. “I think that’s where a hypothesis comes from. But then I test that hypothesis with rigorous research methods.”

  He nodded. “Oh, so you really did interview those people for your project?”

  I nodded back before my brain could register why his words burned through my core. He was referring to the study I completed under his guidance in which I assessed the health literacy—the ability to understand written health information—of dialysis patients in five local dialysis units. Though it was a small study of only sixty-two patients (73 percent of whom were Black), I found that dialysis patients with low health literacy had an almost 80 percent lower likelihood of being referred for kidney transplant evaluation than did dialysis patients with adequate health literacy, even after accounting for other factors that might explain why patients are referred or not.

  The question was asked jokingly, but just as there is truth in humor, there is also insinuation. And it seemed to me that the implication here was that my research integrity was being questioned. I felt like I had just awakened to a note on the nightstand that read: Sorry. I can’t.—Yin. The relationship as I knew it was over.

  I soon found a new mentor in Ross Pugh, an esteemed internist and researcher who had recently accepted the offer to take on a leadership position at SFGH. Ross was Black, and his research was so focused on kidney disease that nephrologists tended to forget he was a general internist by training. I felt I had won the lottery, but when my prospective boss, Andrew Reeve, was slow to invite me to stay on as faculty, I met with him to ask why.

  “Well, the impression is that you take good care of your patients,” he said. “Particularly some of your patients.” His voice trailed off and he looked away.

  I thought back to when I interviewed for the fellowship program. I was forthcoming about my essay about my experience of becoming a kidney donor. It had been accepted for publication, I told them. They smiled and nodded and soon I received a letter of acceptance.

  “Good for Harvest, Bad for Planting” was published shortly thereafter. It led with my experience as a resident at Highland, where it was clear that our poor, mostly of-color patients were a popular source for harvesting organs but disproportionately lay fallow when planting time came.

  The piece resonated with people widely. Its spread felt viral. It brought some people to tears. Others were enraged at the problem. There was a general outpouring of very positive comments from the general population and even primary care doctors.

  But there was a stillness as the circle approached providers with ties to the kidney transplant system. A blog among a group of transplant social workers was incredulous. They wondered in their posts, how could it be so? Among nephrologists and other transplant team members there was complete silence, even though I circulated the piece myself to several people in my new program.

  “Most people are taught that if they don’t have anything good to say to not say anything at all,” Yin had shared with me back when he told me that he would not support my research project idea to examine why kidney transplant disparities existed. He said it in usual form, bluntly with a roll of his eyes. “People felt it was unfair. That you were shooting from the hip.” And the fact that I had e-mailed it directly to several people in my new program was viewed as insulting. Like I was rubbing it into their faces, he explained.

  I honestly thought it would be an impetus for reflection on the transplant system. It hadn’t occurred to me that others would take a piece about my personal experience personally. How naive of me to think people could be bigger than their egos, but surely they couldn’t think the system was perfect, could they? Surely they could see that the closed doors, the secret lists, the data on who got transplanted and who didn’t bred a certain amount of distrust. Even from a doctor. Couldn’t they?

  While health-care providers may acknowledge that racial disparities in health care exist, most tend to believe they aren’t part of the problem. Apparently many within the local kidney transplant community felt the same. They were offended that I had the audacity to blatantly accuse them of being no different from all the other kidney transplant programs around the country that they believed were the ones really responsible for disparities. There seemed to be no room for reflection. Instead it appeared that not only had they taken my experience of feeling discriminated against personally, but they also tried to make the case that it was me who was the discriminator.

  “She made a rookie mistake,” a Black transplant nephrologist at another institution who was sympathetic of my predicament explained to a colleague, because even though I gave no names, everyone knew the identity of the transplant nephrologist I wrote about. The kidney transplant world is a small pond and I had called out a big fish.

  I was proud of my essay, even though, admittedly, some of my analysis wasn’t 100 percent on point. For example, when I wrote the essay, I was outraged that Robert had been on dialysis for so many years without a transplant. I’ve since learned that at some transplant centers the wait for a kidney could be eight years, especially for people with blood type O. I also learned that where you lived had a lot to do with when you could expect a kidney—at a transplant center just ninety miles away from us, the longest wait time was five years. From my perch as a primary care doctor, I thought that level of kidney function factored into who was offered a kidney transplant, with the neediest given priority, as it is with liver transplants. I’ve since learned it has everything to do with if a person with advanced kidney disease knows they have advanced kidney disease and has access to a nephrologist who thinks they are a good candidate for transplant, and the nephrologist actually refers them—a cascade of requirements vulnerable to the effects of personal bias and racism at an institutional level. Anyone who says differently is either blind or
lying to himself.

  A few years ago, during a discussion of my essay in a medical student writing workshop I led, one student asked with a gotcha!-yet-curious lift of his left brow and squint of his eyes, “Now that you’re on the inside, do you still feel the same?”

  “I get it . . . but it’s still bullshit,” I responded without pause. But once the smiles and laughter that erupted around the room died down, I repeated my more thoughtful, complete rationale. “Because if the reasons they give to explain disparities in access to kidney transplant kept the ‘worthy’ from getting one, they would have figured out ways to overcome them. Just like they did for dialysis.”

  “Besides,” I went on, “even as a nephrologist, I still didn’t know what happens behind those closed transplant allocation doors.”

  I gave my kidney to help Robert overcome the trappings of the transplant system. The essay was my way of helping those who were still trapped. I couldn’t sit silently. Even if it did cost me a job.

  I happened to be assigned to the hospital service with Andrew at SFGH when I asked to meet with him about staying on as faculty. It was my opportunity to show him firsthand that I was a good choice to join his nephrology division as faculty, in that I was smart enough and willing to take excellent care of all of my patients.

  It was my last day before leaving SFGH for my final rotation as a fellow at UCSF. It was my habit to say good-bye to patients. I felt it was bad enough that the doctors were always changing; the least we could do was soften the transition by making a point of saying good-bye.

  Room after room, Andrew and I visited the patients whose care we were involved in.

  “So I wanted to let you know that this is my last day on service here, but Dr. Gupta will be taking my place. She is very good and I will tell her all about you,” I said to each one, and they would smile and nod their own good-byes. Except the last one.

  He lay bare-chested in his hospital bed, making the dirty white boy tattoo covering his entire chest impossible to go unnoticed.

  “Oh, no!” he exclaimed, as he threw his hands up then slapped them down on the bed. “You’re the only one who tells me the truth!”

  Out of the corner of my eye, I saw Andrew’s eyebrows lift and his forehead wrinkle.

  18

  Three Ladies

  Not long after I joined the faculty at San Francisco General Hospital I met eighty-three-year-old Ming Lee in the pre-dialysis clinic where I served as the attending nephrologist when my colleague was unavailable. Just a few months prior, my colleague was one of my attendings and had a good three decades of nephrology experience over me, so I tended to not change the care plans already under way for patients returning to the clinic.

  Mrs. Lee’s plump face was constantly smiling. OK. Thank you. Doctor. These were the only English words, usually strung together, I ever heard her say. A Cantonese interpreter translated the rest and her granddaughter sat silently beside her. Mrs. Lee had an eGFR of 16 milliliters per minute, only about 3 teaspoons of blood coursing through her kidneys’ filters each minute, when normal for her age is closer to 17 teaspoons. She also had an extensive list of other medical problems—blockage in her heart arteries, ministrokes, gout, and a recent bowel obstruction—just to name a few. She was scheduled to see a vascular surgeon the following week to talk about creating a fistula for hemodialysis, but she was ambivalent about going to that appointment and about dialysis in general.

  I was ambivalent too. The plan for Mrs. Lee felt wrong. Given her age and overall health status, I didn’t think dialysis was the right thing to do.

  Though I wasn’t aware of it at the time, a small but growing body of research supported my intuition. It showed that patients similar to Mrs. Lee—over seventy-five and with serious medical problems in addition to advanced kidney disease—were as likely to live as long without dialysis as with it and often with a better quality of life. This research comes mostly from the United Kingdom, where about 15 percent of elderly patients with end-stage kidney disease die without ever starting dialysis. They have programs in place to provide conservative management—treatment aimed at minimizing symptoms of kidney failure while maximizing the quality of life remaining without dialysis.

  The United States doesn’t track patients who don’t start dialysis, but almost all elderly patients who start dialysis do in-center hemodialysis, and patients over age seventy-five are the fastest growing group starting dialysis, their numbers having doubled over the last two decades. The burdens of hemodialysis—symptoms of extreme tiredness, cramping, and dizziness; dialysis access–related procedures; and travel to and from the dialysis center—are common among all patients, but particularly so among elderly patients. A 2009 study published in the New England Journal of Medicine showed that almost two-thirds of elderly nursing home patients were in worse shape—either less able to take care of their own basic needs or dead—within just three months of starting dialysis, suggesting that treating such patients with dialysis was in direct violation of one of medicine’s guiding principles: primum non nocere, first do no harm.

  Like most nephrologists just completing training, I felt well prepared to diagnose acid-base disorders and do a kidney biopsy, but completely unprepared in how to talk about or practice conservative management. Rather, I was taught that transplant is better than dialysis and that dialysis is better than death. Always.

  It was as if dying of kidney failure wasn’t allowed. As if the fact that dialysis existed and was readily available automatically meant people should never die from kidney failure. We approached dying of kidney failure as a never event, a tragedy akin to dying of colon cancer because a colonoscopy wasn’t done, or of cervical cancer because of missed Pap smears. She died of kidney failure? How could that be? We have dialysis!

  But would it really be such a tragedy if Mrs. Lee did die from kidney failure?

  Most people say they want to die in their sleep, presumably from a heart that simply stops beating. Maybe dying of kidney failure after you’ve lived a long life is a close second to dying painlessly in one’s sleep. I hadn’t witnessed it at the time but I’ve since learned that the person becomes progressively sleepier and sleepier. Over weeks. Months. Even years. So slowly, they may not be fully aware that they are sleeping more. Some have nausea and shortness of breath. Some have muscle cramping pain. But nothing that couldn’t be tempered with a little shot of this or that—until they just didn’t wake up anymore.

  As a fellow in the pre-dialysis clinic, what I observed for how to have discussions with patients approaching end-stage kidney disease seemed consistent with the monolithic, unquestioning agenda implied by the clinic name. The response to patient hesitation toward dialysis or outright refusal of it often felt threatening, coercive, even bullying to me.

  “Start dialysis or you’ll be dead in two weeks.”

  “You have a responsibility to your grandchildren to be here.”

  “If you refuse to start dialysis, then you will be discharged from this clinic.”

  These were the refrains left in my mind. I was determined not to repeat them. I was no longer the fellow just doing what I was told to do, saying what I was told to say. My actions were my own. My words were my own.

  I tried something different with Mrs. Lee that day.

  “Not everybody chooses to start dialysis,” I said delicately, tiptoeing into a conversation about the possibility of another course.

  But before the interpreter could say my words in Cantonese, I watched the granddaughter shift in her seat and the cross of her arms tighten. Though she hadn’t spoken a word, it was clear that she understood English and that she didn’t like what I was saying.

  I didn’t know how to move Mrs. Lee off the path she was on without making her or her family feel that I was denying her care or sentencing her to death. I didn’t know what a different path would bring.

  I retreated.

  “Well, maybe you should just go to the appointment and hear what the surgeon has to say and t
hen decide if you want to go forward with it,” I said.

  With these words, the granddaughter’s posture softened and Mrs. Lee smiled and nodded. OK. Thank you. Doctor.

  Five months and two surgeries later, I saw Mrs. Lee in clinic again. She had a fistula buzzing in her left upper arm and I said nothing to suggest she consider a path that did not involve dialysis.

  Another year had passed when I learned that her kidneys had failed to the point that my colleague thought starting dialysis was appropriate. Her fistula was ready to use. She started dialysis with a Cantonese-speaking nephrologist in a Chinatown dialysis unit.

  Oh good, I thought when I heard the news. She would be with people who spoke her language. A community who understood her experience.

  A few months later, I walked into our renal center administrative office. I checked my mailbox. I signed off on orders for a new patient’s peritoneal dialysis supplies. I chatted with office staff. Like any other day.

  “Do you remember the patient Ming Lee?” asked Bao, the office administrator. Chinese American Bao was a dialysis technician before joining the business office. She sometimes worked as a dialysis technician at local dialysis units, both to help out and to keep her skills sharp.

  “Yes, of course. How is she doing?” I asked brightly.

  “She jumped off the roof of her five-story apartment building.”

  She. Jumped. Off. The. Roof. The words hit me in the chest so hard they took my breath away.

  I imagined how unheard she must have felt, even in Cantonese. How dark her world must have been, with no sign that the sun would shine. Ever. Again.

  Maybe she jumped off that roof because of something completely unrelated to dialysis. But maybe it was all about dialysis and she saw no other way out. And I didn’t have the training, the words, the courage to show her there was. I tried not to cry.