Hundreds of Interlaced Fingers Quotes

“For every five of our dialysis patients, one will die within the year. Yet we often don’t bother spending the time it takes to have conversations about what patients would want their care to be like at the end of their lives. Since dialysis can be a life-saving treatment in many circumstances, we develop a false sense that sudden bouts of illness serious enough to land our dialysis patients in the hospital are temporary when, truth is, dialysis cannot change the reality that the path of kidney failure is a continuous one toward death. A path that is littered with sudden illnesses and setbacks, and recovery is never back to the level of function that the person enjoyed before.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“Yet published research studies suggest that patients and family members want to be given information about life expectancy, even if prognosis is poor. Others have shown that those engaged in shared (as in with input from their doctor), informed decision-making are more likely to make decisions about dialysis and end-of-life care consistent with their personal values—often resulting in preferences for less aggressive care and more conservative management.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“Besides, most of us got into this business of doctoring because we wanted to help people. What has always been the implied indirect object here is “live.” We got into this business to help people live. To switch that out to “die” is counter to how we’ve been raised.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“We say we want people to make decisions for themselves, but mostly I think we are afraid of being wrong, afraid of being held responsible, afraid of being sued.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“While tools to estimate prognosis among dialysis patients and tools to estimate prognosis among patients with advanced kidney disease are in development, without a crystal ball it is doubtful that any tool will ever have enough precision for nephrologists to feel assured of accuracy for the patient before us. However, since the vast majority of patients and families only have their experience with illness up to the present moment, our clinical knowledge and experiences with similar patients about what the future may hold are invaluable—and should be shared.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“It is our inability to accurately predict when people will die that usually keeps us from preparing patients for death. In one survey of dialysis patients published in the Clinical Journal of the American Society of Nephrology in 2010, less than 10 percent reported that any doctor had ever discussed prognosis with them.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“We get paid much more to keep someone on dialysis than to keep them off of it. If we don’t achieve dialysis metrics—like avoiding dialysis catheters or providing a certain dose of dialysis—known to best result in long-term benefits, we are financially penalized. But create a fistula in a little old lady that usually requires interventions to make it work and keep it working and make her stay on the dialysis machine as long as it takes for the numbers to look right, then essentially get a bonus. If we see an in-center hemodialysis patient four times in a month, we stand to make 50 percent more money than if we only saw her once. And the nephrologist really only has to see the patient once each month—if a physician assistant sees the patient the other times, we still get paid. We would have to document a comprehensive medical history and examination over the better part of an hour with a patient returning to clinic twice to see the same money—and good luck trying to justify why that was clinically necessary to do. The second, third, and fourth in-center hemodialysis patient visits can be more like drive-bys—a simple documentation that we (or the physician assistant) “saw” the patient, with no notation of time required. Private insurance companies and the Medicare ESRD program pay top dollar for dialysis care, not clinic visits. It’s profitable to build another dialysis center, but we haven’t figured out how to build comprehensive outpatient palliative care services.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“Here we seem to assume cheaper is worse when really it just means there is no staff or building that must be paid for.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“I learned to see transplant for what it is—a treatment for kidney failure.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“The hope is that our efforts will make eventually as far away as possible. Because once eventually comes, all that is left to do is to try to replace the kidneys with a transplant or dialysis, because we can’t live without Her.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“His eyes weren’t red anymore. His skin no longer had that washed-out look. He had already been happily guzzling ice-cold water from the pink plastic hospital pitcher to his heart’s content. “They told me to drink,” he said, grinning. I grinned back. I was so happy for him. Gone were the days of having to limit how much liquid he took in between dialysis treatments. Now he had a kidney that could pee out any fluid his body didn’t need. He focused on learning about all the new antirejection medications that would keep his new kidney healthy. He was eager to get on with making up for the six years he lost to dialysis. The six years he had to curb his ambition and planning for the future because he didn’t know what the next hours, days, weeks, months, years would bring.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“It wasn’t until cyclosporine was discovered in 1976 that the balance between preventing rejection and avoiding infection greatly improved. That plus simultaneous efforts to figure out how to better match donors to recipients and the discovery of newer, better drugs over time has created the current reality in which more than two-thirds of all kidney transplants are still working after five years, while little more than a third of dialysis patients are still alive in that same time span. Some kidney transplants last twenty, thirty, forty, even fifty years.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“In 1999, a bunch of researchers published a study of about 1,600 adults examined in order to come up with equations to estimate kidney function. Just plug in the patient’s creatinine, age (because adults tend to lose muscle mass as we get older), and gender (because men tend to have more muscle mass than women), and voila!—an estimate of kidney function. Most laboratories can do this for us now. A rising creatinine level in the blood means the kidneys are not able to pee creatinine out as well as they used to, so the person’s estimated kidney function is lower. But wait—if the patient is Black, the study determined that you have to multiply by 1.2 to get a more accurate estimate. This finding was attributed to Blacks in the study having higher muscle mass than Whites and, therefore, higher amounts of creatinine in their bodies. Laboratories report the eGFR, and just below it, the eGFR if Black. Of course one of the problems with generalizations is that they aren’t always true. In medicine, in particular, they make us lazy and we often accept them without question—especially when they are in line with our underlying assumptions and beliefs. Like the belief that Black and African are inherently different from White and European at a DNA level, a belief that dates back to the days when American researchers were measuring Black-White differences in skull size to prove Black inferiority and justify slavery. But I wonder how often health-care providers make the mental adjustment that the “race adjustment” is really a proxy for muscle mass rather than just focusing on the race of the person in front of them when they are assessing lab results. I wonder if the person in front of them were a White male bodybuilder how many would tell him the race-adjusted estimate of kidney function, or a skinny Black woman the non-race-adjusted estimate. Then too I wonder how many health-care practitioners realize that equations derived from the original study of 1,600 people only included about 200 Blacks—and no American Samoans, no Hispanics, no Asians. These groups have very different body frames, but all are simply “not Black” in our equations. The implication, then, is that only Black people are different. This shortcut has the potential for a significant negative impact on Black patients who happen to not have a high muscle mass. Patients like Book of Eli. When the non-race-adjusted eGFR is 20 (when a person can be placed on the waiting list), the race-adjusted value is closer to 25. Just as the difference between eGFRs of 20 and 10 can be several years for many patients, so can the difference between 25 and 20. Years of accruing time on the kidney transplant waiting list when thirteen people on the waiting list die every day waiting for a kidney.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“But it didn’t go far enough. It didn’t go far enough because most people start dialysis when their eGFR is somewhere between 5 and 10. The difference between an eGFR of 20 and 10 alone can be several years for many patients. Years that could be spent accruing time on the kidney transplant waiting list. Sometimes so many years that a patient could potentially get a preemptive transplant—a transplant without ever having to go on dialysis.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“In December 2014, the Kidney Allocation System implemented a new rule that turned the key in the steerage lock: the waiting list date would be backdated to when the patient started dialysis rather than at the time of transplant evaluation. This was an important step toward minimizing the effect of human error on access to kidney transplantation.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“Robert had been under the care of a nephrologist for years prior to reaching end-stage kidney disease but didn’t hear about kidney transplant as an option until months after starting dialysis. Now in all fairness, few nephrologists would begin a conversation about kidney replacement options before the patient’s kidney function—their estimated glomerular filtration rate or eGFR, how fast the kidneys filter the blood—had fallen to 25 milliliters per minute, and the patient cannot be placed on the kidney transplant waiting list until kidney function reaches 20. The medical world tends to simplify the explanation of eGFR to patients as “percent function,” though 100 percent function of normal kidneys in a young person can be closer to 125 milliliters per minute, so a more accurate and easier-to-understand explanation would be that we start out with about half a cup, or 25 teaspoons, of blood flowing through our kidneys’ filters every minute. Using this analogy, nephrologists usually start talking about kidney replacement options when it has dropped to 5 teaspoons a minute, and a patient can be placed on the waiting list once his kidney function has dropped to 4 teaspoons a minute.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“National data said it wasn’t just our imagination or where we sat. I soon learned that though Blacks and Whites each made up a third of the kidney transplant waiting list at that time, Whites received every other donated kidney and Blacks received every fifth one, which meant that on average, Blacks waited nearly two years longer than Whites for a kidney transplant. As a primary care doctor at the time, not aware of the realities of nephrology, I didn’t know that two years could mean never having to be on dialysis at all. That two years could be the difference between surviving in body and spirit. Or not.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“[...] 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.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“But when the kidneys do fail, a strange thing happens. Suddenly they don't feel fine anymore. It becomes too much to deny. It's at this point that fear of death overrides fear of dialysis. Dialysis, they come to see, is the thing that will save them.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“Yes, dialysis was the miracle.

No doubt Ms. Afuta had a different kind of miracle in mind, but dialysis was the only one that was coming. Without it her sixteen-year-old baby girl would soon be motherless. She seemed to be looking at dialysis as if it was the end of her life, when in truth dialysis would just mean her life would be different. No, it would not be perfect. No, it would not take away all the issues that come with a vital organ dying. Yes, it would take time and have its own frustrations to deal with. But the time in between could be filled with life. Family. Friends. Exercise. Work. Play. Travel. Joy. Love. [...] There was no escaping dialysis. If she wanted to survive. If she wanted life.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“An earlier experience during my residency stood out as an example of how the sword of race-based generalisation could cut more than one way. [...] Yet the renowned rheumatologist disclosed, the patient's diagnosis was delayed for years because he did not consider the diagnosis. He did not consider it because he was not really describing a forty-something-year-old Black woman. He-a sixty-something-year-old White man-was telling us his own medical history.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match

“Rather, I was fascinated with how going through the process of becoming Robert's kidney donor gave me a glimpse of the kidney transplant system that being a primary care doctor did not provide. Though at the time I was working on research projects on the effects of language barriers on health outcomes, my experience with Robert inspired me to change my research focus to what made some people more likely to get a kidney transplant than others. Donating my own kidney was my solution for Robert. I saw research as the way to help other people like him.”
― Vanessa Grubbs, Hundreds of Interlaced Fingers: A Kidney Doctor's Search for the Perfect Match