“I tried to lay back in bed and I felt like someone was trying to kill me,” she said. She was describing a sensation of drowning just like others with fluid building up in their lungs described.
“I told my boyfriend to call 911 and he freaked out,” she went on. “And can you believe they kept me in the ER for more than twelve hours before I got a room?” Her tone was higher pitched with a twinge of anger then.
“Yes, I can.” I nodded knowingly. “I was trying to spare you from that,” I said, not being able to restrain my I told you so after all.
Just as Robert wasn’t unusual in saying he’d rather die than start dialysis, Afuta wasn’t unusual in resisting advice to get ready for it. Many patients hold on to the notion that they feel just fine and they pee just fine and they would rather die than ever start dialysis, despite the assertions of our clinical expertise to the contrary. They believe it is the dialysis that will kill them, not the end-stage kidney disease. They saw it happen to their mother/friend/second cousin on their father’s side. The dialysis done it. Not Mama’s heart attack. Not cousin’s stroke. And definitely not drug buddy’s continued cocaine, heroin, or methamphetamine use.
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.
16
Changing Times
In 1960, the first dialysis center for patients with irreversible kidney failure—end-stage kidney disease—was established in Swedish Hospital in Seattle. It had the capacity to treat just five patients at the time, when more than one hundred thousand people were dying from end-stage kidney disease each year. Dialysis was a limited and expensive ($10,000 a year in the beginning, the equivalent of more than $80,000 today) resource, so someone had to decide who would be lucky enough to get it. That someone became known as the God Committee.
The God Committee—or the Admissions and Policies Committee of the Seattle Artificial Kidney Center at Swedish Hospital as it was formally named—was a seven-member group appointed in 1961 by Seattle’s King County Medical Society. A banker, a housewife, a labor leader, a lawyer, a minister, a state government official, and a surgeon were tasked with deciding the select few adults who would get this new lifesaving treatment, which lives were worth saving.
By 1967, there were roughly one hundred dialysis centers around the country able to care for at least one maintenance dialysis patient. But there still wasn’t enough capacity to take on everyone in need. A set of medical and social worth criteria had to be met in order to get dialysis.
One would not have to understand much of US history to guess who was deemed worthy. Young. White. Male. These were the characteristics of the vast majority of those first few thousand maintenance dialysis patients. According to 1967 dialysis census data published in the Journal of the American Medical Association in 1981, 91 percent were under age fifty-five, 91 percent were White, 75 percent were men. But when the magnitude of end-stage kidney disease in the population meant that even some of the worthiest were dying, legislation in 1972 was passed to extend Medicare benefits to provide dialysis treatment to essentially every citizen with a nephrologist’s order—the Medicare ESRD (End-Stage Renal Disease) Program. By 1978, the dialysis population was much older, of color, and female. Nearly half were over the age of fifty-five. Blacks made up a third of dialysis patients, consistent with the fact that Blacks made up a third of the population that had end-stage kidney disease. There was no longer a gender disparity. This new law promised equity in dialysis delivery, but also led to a system where it could be a government-funded option for any US citizen with kidney failure—even Spider-Man.
Spider-Man is the name that came to mind when I saw my dialysis patient Jerry Shaw standing for the first time. For the most part, I only saw my patients in recliners as they received their dialysis treatments, not walking around or in a clinic exam room. So when I walked into the dialysis unit while Jerry stood waiting for the technician to finish cleaning his chair after the last patient, I was taken aback. He looked like he would topple over at any moment, clearly and heavily under the influence of Valium or methadone or heroin or something else or some combination thereof. His limbs and head seemed to hang from an invisible thread attached at his upper back. His belly bulged beneath a bright yellow Hawaiian shirt. He looked like a spider.
Jerry had bipolar disorder and a heroin addiction but refused psychiatric care and drug rehab programs. The only thing that helped, according to him, was double doses of Valium. He said they eased his anxiety, but from my perspective they maintained the semiconscious state he preferred to exist in.
I wasn’t always so cynical about Jerry. In the beginning, I tried to reach him. He was the first dialysis patient I met in my new role as nephrology faculty and I was caught up in that same thinking that many doctors can be guilty of—that no one before me had really tried to reach him and if they did they didn’t do it as well as I could. I don’t know if this attitude comes from youth or cockiness—probably a combination of both. I pulled up a medical stool and gave him time to show him I cared. I even reached into his filthy bag of pill bottles and got my finger smeared with something of the color and consistency of peanut butter. At least I hoped it was peanut butter. Some bottles weren’t capped and many were full when they should have been taken months prior. I visited him when he ended up in the hospital for an infection in the blood. “I didn’t shoot up into my fistula,” he admitted when I was trying to determine the source of his infection. “Just near it.”
Perhaps it was this long hospital stay that began with the discovery of pus coming from his fistula that led to an infection of his spine and heart, followed in less than a week by another hospital admission prompted by his crack smoking–induced lung failure that caused my bleeding heart to run dry. I began to see him as unreachable, offering nothing positive to anyone around him or even himself. He actively, repeatedly engaged in behavior that he knew could take his life—which seemed a lot like suicidal behavior to me. But because he would be found unconscious and brought to the hospital, dozens of health-care providers and hundreds of thousands of dollars were dedicated to saving him. Repeatedly. Eventually he was found dead in his SRO (single-room occupancy) hotel room.
The Medicare ESRD program entitled him to receive in-center hemodialysis at the modern times rate of nearly $85,000 a year. All with nothing required in return—not even that he engage in counseling or rehab or anything that might help prevent another attempt to take his own life.
There was always a Jerry or two under my care. But even though the Jerrys felt like a substantial part of my practice because of the disproportionate share of time and money we gave them, only about seven thousand of the more than one hundred thousand patients starting dialysis each year have a drug addiction.
However, because both transplant and peritoneal dialysis are considerably less expensive than hemodialysis, the Jerrys demand the most expensive care by default. I have yet to see a patient with end-stage kidney disease and an active drug addiction be managed with peritoneal dialysis. Being able to do peritoneal dialysis at home first requires that a person have a home and one with enough space to store dialysis supplies. Homelessness is common among patients with drug addiction, and an SRO hotel room can’t accommodate the twenty-plus large boxes of dialysis fluid that are delivered each month. And since ongoing illegal drug use can cause kidney disease and those using illegal drugs tend not to be reliable about taking medications, kidney transplant is a nonstarter.
Moreover, injection drug use damages blood vessels, usually making creating a fistula impossible. Just by virtue of the catheter being a foreign object piercing the skin, it is prone to infection. In the Jerrys, a catheter also presents easy access to the bloodstream—just a couple of twists to get a tiny cap off when he would have otherwise had to go hunting between his toes for a vein to get t
hat next high. This greatly increases the risk of overdose and infection and long hospital stays. Therefore the Jerrys also demand care that places them at even greater risk of complications and death expected from end-stage kidney disease alone.
The Institute of Medicine’s Kidney Failure and the Federal Government states that cost containment should not be a criterion for deciding whether or not to offer dialysis because dialysis can be lifesaving and is readily available. What began as one dialysis center able to provide treatment for five patients had grown to 5,800 dialysis centers capable of providing more than 43 million dialysis treatments each year by 2012. As the number of people with end-stage kidney disease requiring dialysis rises—as it does every year—so has the number of dialysis spaces grown to keep pace. That’s nearly five hundred thousand dialysis spaces. No longer is there a question of whether any citizen deserves dialysis. The question begins and ends with “Does the person have kidney failure?” If yes, then yes, dialysis can happen.
Patients with end-stage kidney disease make up less than 1 percent of the Medicare population but consume about 7 percent of the Medicare budget. So I can’t help but wonder, what price—in human effort and dollars—is too much to pay to maintain a life that is actively, repeatedly trying to destroy itself?
I believe the least we could do is require that patients with drug addictions engage in drug treatment. Addiction specialists maintain that drug rehabilitation programs are readily accessible and effective for the treatment of drug addiction. What percent of dialysis patients with drug addiction participate in drug rehab programs is not known, but in a 2013 survey from the National Institute on Drug Abuse, less than 15 percent of people with drug addiction in the general population received treatment in the past year. What’s worse, 80 percent didn’t believe they needed treatment.
There are some situations in which patients are expected to demonstrate that they are committed to successful outcomes in their own care. Many transplant centers require obese patients to lose weight and patients with drug or alcohol addiction to show they can get and stay clean and sober before they can be considered appropriate transplant candidates. Morbidly obese patients are required to lose significant weight prior to bariatric surgery to demonstrate commitment and improve continued success after surgery. It would seem logical to require patients with end-stage kidney disease and drug addiction to actively engage in drug rehab programs as a part of maintenance dialysis care for the individual’s good and for society’s good.
I question if this will ever happen because here in America we believe in individual choice, no matter the cost. And, contrary to the volumes spoken by their actions, the Jerrys are not suicidal. They are afraid to die. Individual desire trumps societal good.
But, as I was taught when I was a fellow, there were still a few situations in which we did not offer dialysis. When it simply was not appropriate. Cases where dialysis was considered futile because another devastating, untreatable, life-limiting illness was at hand.
I stared at Mr. Madani’s CT scan images on the monitor. The horizontal slices through Mr. Madani’s fifty-five-year-old torso showed that the cancer that started in his left kidney had taken over most of his abdominal and pelvic organs. Right kidney. Pancreas. Liver. The sheer bulk of the cancer had forced the diaphragm separating abdomen from chest upward, shrinking the space that his lungs could expand into.
The surgeon’s attempt to cut out the cancer when it was thought to be just in the left kidney had clearly failed. There was nothing else the oncologists could offer him. Nothing they had tried—and they had tried everything—had stopped the cancer from growing. The last chemotherapy they tried only succeeded in poisoning his remaining kidney. They knew this could happen, but I imagine they hoped his right kidney could withstand the assault while the cancer alone retreated. The normal kidney function test just a week prior suggested this hope in a story of dashed hopes was reasonable. Wrong again. The kidney was failing, so the oncologists sent him to be admitted to the hospital for nephrology consultation.
At this time I was the nephrology fellow, responsible for gathering the pertinent facts and physical examination data to report back to my supervisor, the attending nephrologist. This will be an easy one, I thought as I left our workroom and headed for the patient’s. This guy is dying. I don’t even know why they called us for a consult. They know we don’t dialyze people with terminal cancer.
After three obligatory taps on the closed door and a brief pause to announce my presence, I walked into the hospital room, sure I would be leaving very soon to be on to the next task in another long, busy day. This would be a quick no to dialysis, and I wouldn’t even need to see him tomorrow—a rare one-visit consult.
The private hospital room, standard at UCSF Hospital, felt large around the emaciated Mr. Madani. He sat leaning slightly forward in a blue vinyl waiting room chair while the recliner stood empty. His elbows were propped on the black metal armrests. His shoulders hunched in his singular effort. Breath in. Breath out. The pale blue hospital pants lay baggy over bony legs. He looked up at me without moving his head, eyes sunk deep into his skull. The whites were a tired yellow.
I introduced myself and my purpose for being there. He nodded ever so slightly as if movement would only make things worse. By the window stood Mrs. Madani. Her knitted brows untwisted and lifted with the hope of what my presence might bring. I nodded a thin-lipped hello.
“How do you feel?” I asked, turning my attention back to Mr. Madani.
“I itch,” he replied, looking up at me momentarily, then back to staring at the white linoleum tile a few feet in front of him. The itching seemed to consume him, demanding his constant attention. He did not bother to scratch. I imagined the itch bored deeply into places his nails could not reach.
Itching could be caused by kidney failure, but according to his chart the itching predated the kidney failure by weeks. In Mr. Madani’s case, the itching was caused by a buildup of bilirubin, caused by his cancer pressing the draining bile duct shut like a pinched straw. Several attempts to pass a tiny expandable coil across the pinch to stent the duct open had failed.
I walked over to him for a basic examination, trying not to make him move. None of the usual thumping, probing, or prodding in a search for clues to solve the medical mystery. I already knew the past, present, and future.
I stood at the back right corner of the chair between him and the made bed. A bony spine peered through the faded blue hospital gown ties at his nape and lower back. My stethoscope chest piece at his midback. Decreased breath sounds. No crackling sounds of fluid in the lungs. My stethoscope just right of his left nipple. A heart beating with a regular rate and rhythm. My right hand pausing for just a moment on his firm, bulging abdomen. My right thumb releasing its pressure against his right shin. No dimple of displaced fluid left behind. Done.
“OK,” I said as I stepped away. “I have to go talk with my attending to decide what to do.” I tried to appear as neutral as possible.
Mrs. Madani, still standing at the window, turned to face me fully, her hands clenched together. Tears in her eyes. “Anything you can do, Doctor,” she pleaded. Mr. Madani blinked in agreement.
The love and desperation in her words and eyes took my breath like a basketball hard to my chest. The prickly sting of my own emotion crept up into my throat. I could not speak. I nodded a thin-lipped We will do the best we can, knowing that by anything, she wanted us to do something that could maybe extend his life by any means necessary. I almost wanted to grant her wish.
I wondered how much of the situation they understood, because if they understood, surely they would not want more procedures and treatments that would mostly only cause more discomfort. But I did not ask. It would be hard enough to look them in the eyes later and tell them dialysis was not on the list of things we could do, I thought as I left the room.
I met my attending in the nephrology fellows’ workroom, a small space just big enough for two desktop computers and
a dry-erase board for teaching. Dr. Scharf was tall and thin with distinguished wire-rimmed glasses and gray hair. He was our James Brown, the hardest-working man in the nephrology business, usually chewing on a stick of gum so he didn’t have to pause to eat. He was a brilliant scientist, having done groundbreaking work in his field, and a gifted clinician, whose understanding of nephrology was unsurpassed. But in response to fellows’ errors in clinical acumen or judgment he was known to unleash tirades so cutting they made even the men cry. But just as I was entering the fellowship, the funding for his lab dried up. Now all his time was spent seeing patients. Patients in the clinic. Patients in the dialysis units. Patients in the hospital. Often with a team of medical students, residents, and fellows in tow. And the tirades stopped. For the most part.
I remember when he tried to teach me the right way to place a dialysis catheter into the large femoral vein coursing through a patient’s upper thigh, a procedure I had done many times and could do with confidence. As we gathered the needed supplies and walked to the intensive care unit where the patient lay mechanically ventilated and sedated, I reviewed the procedure in my mind’s eye.
With a Betadine-soaked swab, clean the skin over the vein. Start in the center and sweep in a widening circular pattern. Repeat twice more. Cover the entire patient with sterile drapes, precut so that only a six-centimeter circular area around the target is exposed. I would use the portable ultrasound machine to visualize the vein, just to be extra safe, though I had done it many times by feel alone when no ultrasound was available. Just under the skin above the vein, inject 5 milliliters (1 teaspoon) of lidocaine so the patient will not feel the pain of the larger needles to come. Feel the blood pulse, pulse, pulse through the patient’s right femoral artery beneath my left index and middle fingers encased in sterile latex gloves. My right hand holds the needle. The vein is just next to it. Remember which side—there is a V-A-N driving out of the patient’s crotch, a mnemonic we learned early in training. Vein-Artery-Nerve. The vein is on the crotch side of the artery. Insert the needle at a 45-degree angle. Burgundy blood oozes into the syringe. This is good. I’m in. Bright red and spurting would mean I had hit the artery—not good. Now move my right hand and rest it against the patient’s thigh to hold the needle securely in place as I twist off the syringe with my left hand. The hard part done.
Hundreds of Interlaced Fingers Page 15