This time would be no different, I anticipated. There would be no ineptitude to provoke a Scharf tirade. We would be done within thirty minutes and on to the next task of the afternoon. Instead, ninety minutes into his way of inserting a dialysis catheter, I found myself frustrated trying to balance my hands in midair while holding the needle steady as he instructed.
“This is awkward for me. I can’t do it this way. I’m going to do it my way,” I announced sternly.
“OK,” he said rather sheepishly. “I was just trying to show you the proper way to do it.”
“My way works too,” I said, already moving along into it.
Silence. No tirade. Perhaps it was my straightforward manner that protected me from Dr. Scharf’s outbursts. I looked forward to being on inpatient service with him, even asked to be assigned to his clinic. As we would wait for the elevator or for the urine to spin down in the centrifuge, he tried to teach me Yiddish words, and in return I tried to teach him some urban slang that, truthfully, I had just recently learned since moving to the Bay Area. While I forgot most of his words right away, for weeks he joked about looking for but never finding a ho tat (aka the tramp stamp, a tattoo just above the gluteal cleft, aka butt crack, of a certain type of young woman) when examining his almost exclusively middle-age and elderly patients. Bless his heart, I thought.
He listened intently as I presented the case of Mr. Madani. I told him the history of his cancer, the CT scan, the rounds of first-line, second-line, third-line, then experimental chemotherapy, the surgery and procedures, what I found on physical exam, and the lab results. Assessment: fifty-five-year-old man with widely metastatic renal cancer, refractory to all treatment, now in chemotherapy-induced acute kidney failure. I paused before giving my plan—I think that, therefore, he is inappropriate for dialysis. He spoke first.
“Better call IR and let them know we need a line now. And be sure to call the charge nurse to let her know she’ll need to work him into the schedule for a short run today.”
I was stunned. Dr. Scharf’s orders conflicted with what I had been taught up until that point in my training about the indications (such as high potassium, ethylene glycol poisoning, and kidney failure with symptoms) and the contraindications for dialysis—like a terminal illness other than kidney failure. Things had changed.
In 1999, the Renal Physicians Association and the American Society of Nephrology published its first edition of the clinical practice guideline Shared Decision-Making in the Appropriate Initiation of and Withdrawal from Dialysis to assist nephrologists, patients, and families in making decisions about dialysis. The guide promoted shared decision-making “because it addresses the ethical need to fully inform patients about the risks and benefits of treatments, as well as the need to ensure that patients’ values and preferences play a prominent role.” Mind you, as a fellow I was completely unaware of this publication. Perhaps I missed the lecture or rounds when it was mentioned, but what a fellow is exposed to during training is more likely a testament to what is valued in an institution, such as an emphasis on hard science like identifying the genetic mutation in a congenital kidney disease rather than on soft science like improving communication between patients and doctors. But no matter; I don’t think my awareness of the publication’s existence would have been very helpful in the case of Mr. Madani because there was no conflict that needed guidance to resolve if the nephrologist doesn’t question the patient’s appropriateness for dialysis and the patient and his family are in agreement. The decision was already made. Initiate dialysis. No committee or even paperwork required.
As instructed, I informed interventional radiology that a catheter for dialysis was urgently needed and wrote the initial dialysis orders. Without question, the radiologist burrowed the plastic catheter tube under the skin just below Mr. Madani’s right clavicle and into his chest, where it was threaded into the internal jugular vein. Once the catheter was secured into place with a stitch and taped down under gauze, Mr. Madani was wheeled to the dialysis unit, where the nurse connected him to the machine via his newly placed catheter and carried out my dialysis orders. After a brief dialysis run the next day, he would be discharged to continue dialysis three times each week in an outpatient dialysis unit.
Less than an hour after launching the series of events to dialyze Mr. Madani, I was sitting at a workroom computer when my pager went off. I dialed the number as I sighed and blinked slowly over rolling eyes. This better not be another consult, I thought. Unless this was about someone who just arrived in the ER, a request at this hour from one of the primary medical or surgical teams for our team to see yet another patient would be a direct violation of consult etiquette: request consults before noon. Waiting until late in the day when you’ve known you needed our help since the 6 a.m. lab draw results was grounds for a fellow’s snit.
My call was answered after one ring.
“Hello, this is the renal fellow returning a page.”
It was the oncology fellow. He had heard of our plan for Mr. Madani.
“Why are you putting him on dialysis? I thought you guys didn’t dialyze terminal patients?” There was an undertone of anger and exasperation in his voice, as if I had made his life harder.
“Yeah, that is what I thought too, but my attending disagrees,” I replied flatly.
Dialysis would give Mr. Madani more time to get his affairs in order, Dr. Scharf had explained. I remembered the CT scan. Months of chemotherapy. Dozens of oncology clinic visits. I wondered why his affairs weren’t already in order. But I had only stood wide-eyed, nodding my head. Fellows did not defy attendings.
“Why did you guys send him to the hospital?” I wanted to ask the oncology fellow, but didn’t bother, believing I already knew why. They expected us to say there was nothing we could do either. They didn’t want to be the ones to send him home to die. They had passed the buck to us, but were surprised and maybe even a little angry when we planned to continue invasive, aggressive care.
Though I could see Dr. Scharf’s point and even take in the lesson that there was a role for dialysis in end-of-life care, perhaps as a tool to ease suffering by removing the wastes and fluid that might accumulate and cause a patient to feel nauseous and short of breath. But I did not see how we were easing suffering for Mr. Madani. Rather, we were prolonging his suffering and creating new suffering because with all the good dialysis could bring, plenty of bad would come along too. With dialysis, we would make him leave each treatment more tired than he arrived. We would make him feel light-headed or make his legs cramp from time to time. We would reallocate his time with family to traveling to and from the dialysis unit several times each week. But we would not take away his worst symptom, the constant itching. We were only palliating his fear of dying because dialysis was available, and because apparently saying no is hard, even for the doctors who deal with death so often their patients are called survivors.
Mr. Madani left the hospital as expected, and I went on to the next patient. In the fourth week after my consult on Mr. Madani, his blood pressure became too low for dialysis to remove the fluid that had begun to accumulate in his body without a working kidney to pee it out. He kept going to dialysis because at least it could lower the potassium that, left unchecked, would stop his heart from beating, probably without any symptoms. It was in the fifth week that he showed up so breathless and weak that the dialysis staff sent him directly to the ER. His blood pressure was life-threateningly low. Pressor medications were started to try to bring it up, but they did not. Infection was suspected, so antibiotics capable of killing all known bacteria were started, but they could not kill his bacteria in time.
He had recently decided that he did not want to be intubated in the event he couldn’t breathe on his own, so the stiff plastic breathing tube that would have to be slid into his windpipe in order to connect him to the breathing machine was withheld, even though artificial respiration might have given him a few more days to live. Intubation was where he drew the line.
/>
“Some people want to give up at the end. He was not one of them,” said the attending nephrologist who inherited Mr. Madani’s care in the outpatient dialysis unit. Her choice of words stung me. Some people. Want. To give up. As if choosing to stop all the time-consuming and often painful procedures and treatments when moments of time and comfort are dwindling is a sign of human weakness, of failure.
I had assumed that with each failed chemotherapy no oncologist had suggested No more. Enough. That they could have moved Mr. Madani off the path of medical intervention, but perhaps it was Mr. Madani who wanted dialysis because he believed it would keep him alive, in spite of his widespread cancer. I wondered what drove him. Hoping for a miracle? Believing that forgoing all that was possible was against God’s plan? Not believing any of the doctors? I hadn’t taken the time to find out. I wondered if any of us had.
I wondered too what would have happened if I had had a different attending on service that week or if Mr. Madani had been seventy or slightly less resolute. Would the same orders have been given? Would a different set of orders—or no orders at all—have been easier to give?
The original statutory language for the Medicare ESRD program included a requirement for “a medical review board to screen the appropriateness of patients for the proposed treatment procedures,” but it was removed from public law in 1978 because the language was thought too vague and neither legislators nor physicians were interested in the government determining patient selection. Besides, they assumed the patient population would remain mostly young and working. They did not anticipate a nation where the average age was over sixty with most people having significant medical problems in addition to kidney failure. They didn’t envision a time when questions of appropriateness would arise. And they didn’t foresee a time when the Medicare ESRD program would surpass its originally projected cost of $250 million each year. Enacted in 1972, the Medicare ESRD program cost $1 billion in 1979. Most recent estimates are at more than $30 billion.
But here again, individual desire trumped societal good. And Mr. Madani wanted to be alive. By (almost) any means possible.
When I think of Mr. Madani now, I am reminded of a joke I heard sometime after I was involved in his care: An oncologist walks into a funeral home, looking for his patient. The casket is closed. He opens it and is surprised to find it empty. “Where is my patient?” he asks the attendant. “I wanted to give him one more round of chemo.” “Oh, they took him to dialysis,” the attendant replies.
I laughed at the time, because there is truth in gallows humor. For me Mr. Madani was a lesson in how peculiar medicine can be. It is a place where we fool ourselves into thinking that we can somehow get out of life alive and where dialysis is a means to no end. It is a place where the teaching of dialysis practice becomes more permissive within a two-year fellowship stint, more variable from nephrologist to nephrologist. Dialysis has gone from a miracle to something mundane but to be avoided at all costs to the thing we Americans—no matter if rich or poor, Black, Brown, Yellow, or White—cling to, because it holds the promise of more time. We—providers across specialties, patients, and families—begin to expect it, feel entitled to it, demand it, and we won’t let go of it, even when it doesn’t make sense, even when all it really guarantees is more suffering.
Part V
Letting Her Go
17
Dirty White Boy
Mr. Madani was among the last patients I cared for as a fellow. Clinical training was nearly over. It was time to get a job.
I didn’t want just any position. No private practice. No full-time clinical gig. I wanted to be a clinician researcher, where a sizable chunk of my time would be dedicated to doing research. This requirement limited my options, which were further limited by my location.
Avery was only ten years old and, according to California family law, his surroundings remaining the same trumped where his mother lived. So if I left the Bay Area, I would effectively be leaving my baby. Not an option.
I wanted to stay on at UCSF, with the public hospital as my clinical and research base. A faculty position fully paid for by UCSF is a rarity, but one may be allowed to create a position with money from another source, making UCSF an “eat what you kill” kind of academic institution. In order to create my position, two things had to happen to make my wish come true: I had to win the research funding to support my salary and I needed to be invited to join the faculty at San Francisco General Hospital (SFGH). Just two months prior to the end of the fellowship, I had neither.
I knew part of the blame for my unsecured next steps rested firmly upon the fact that, in an institution filled with the best and the brightest, I was just an average fellow in my depth of basic nephrology knowledge. A bit of me agreed with the medical student who was spending a month on renal service and said with a smile, “Oh, no. The kidney is smarter than me,” when asked if she was interested in a career in nephrology. While I came to be in awe of the kidney during my fellowship, I went into nephrology because of research interests.
Part of the reason I had no research funding was because I didn’t know what I wanted to research that I actually could research. Not could as in intellectually capable, but as in what the system would allow me to do. I went into the fellowship clear that I wanted to research racial and ethnic disparities—why Black and Brown people were much less likely to get a kidney transplant than White people.
But I was discouraged.
I initially sought out Yin Liu as a mentor back in the days when I was still just looking for a research project and not another tough clinical year. Finding a research mentor is often likened to dating. The junior person, the mentee, may have to go on many dates to find her Dr. Right, the senior researcher who not only believed in her potential but also was willing to commit to helping her realize it.
Our first meeting was in his small, windowless office. Yin was a tall, Chinese American man with a receding hairline and flat, black eyes against a stony expression. I would have felt more comfortable if he were Black or even Hispanic. I would have felt more assured that he would believe in my potential, that he would look out for me. But Black and Brown faculty at UCSF were a rarity, particularly those far enough along in their careers to be mentors. There were no Black nephrologists at UCSF and the one Brown option was about to leave for a position at another institution. But I looked at working with Yin as an opportunity to learn how someone from a different race and culture went about achieving success. What their parents said to them that maybe mine hadn’t. What they told themselves that maybe I didn’t.
Yin leaned back in his office chair with his left ankle crossed to rest on his right knee. He held in his hands the CV he asked me to bring.
“How did you find me?” he asked with a strong but clear accent. It seemed only his lips moved when he spoke. No jaw. No cheeks.
“I found you on the CRISP website. I was looking for someone at UCSF with an R01 doing research in kidney disease,” I said. CRISP, now called the NIH RePORTER, was the National Institutes of Health’s searchable database of all federally funded biomedical research projects. I knew that the NIH’s R01 grant mechanism, which was awarded to researchers who no longer needed a research mentor, allowed the researcher to apply for smaller research grants to support someone from backgrounds underrepresented in medicine—Blacks, Hispanics, or Native Americans, individuals with a physical or mental disability, or those who grew up in poverty—at every level of education, from a high school student to a college student, a medical student, resident, or fellow.
“That was clever,” he said, a slight glimmer in his eyes. I had impressed him. My heart skipped a beat like a schoolgirl whose Do you like me? note was passed back from her crush with the Maybe box checked.
He went on to interview me. Where I had gone to medical school. How many research papers I had published. It was clear that he was deciding if I was worth his time. Mentoring contributed to promotion and special grant funding, but only if the mentee wa
s productive or, in other words, wrote research papers that were good enough to be published in reputable medical journals.
He agreed to take me on as a mentee.
Like any other mentor-mentee couple, we were happy for a time. We met regularly. He showed me how he approached research as we worked on my project. He took me to the meeting for a huge multi-institution research project he helped lead and introduced me to his peers.
Things changed when I proposed a project for a career development award. A career development award from the NIH provided salary and project support for junior investigators. I proposed to do what’s called a mixed-methods research project. I planned to do the usual counting of things as done in quantitative research, the most popular type of research. I wanted to count things like how many patients referred for transplant evaluation got kidney transplants—by race. And how many people were involved in deciding who got kidney transplants—by race. But because as Albert Einstein said “Not everything that can be counted counts and not everything that counts can be counted,” I also proposed qualitative research in order to get at all the reasons why the numbers of who had kidney failure and who got kidney transplants didn’t add up. I wanted to interview transplant team members and observe what happens behind the closed doors where the conversations about who will get a kidney transplant are had. Yin perceived my research project idea as too controversial.
Hundreds of Interlaced Fingers Page 16