I never wanted to feel like that again, so I wrote about the experience with Mrs. Lee in my application to win one of the sixty-four spots in Harvard’s yearlong Palliative Care Education and Practice (PCEP) program. The goal of the program was to teach clinicians how to better deliver palliative care to patients with serious illness and how to teach it to other clinicians. According to the World Health Organization (WHO), palliative care is “an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual,” so a good chunk of the on-site PCEP time was devoted to lectures with titles such as “Hope” and “Pain” and “How to Take a Spiritual Assessment.” Definitely not the usual stuff of our renal grand rounds, where lectures with titles like “Angiotensin II Type-2 Receptor Signaling and Renal Sodium Handling” and “Molecular Approach to Sensitized Kidney Transplantation Recipients” were the norm.
My peers were mostly physicians, but there were quite a few nurses and a smattering of pharmacists and social workers too. Since its inception in 2000, there usually was one participating nephrologist each year. I was the nephrologist in the class of 2014. While I welcomed the strange new concepts that PCEP presented, I spent my time trying to translate everything from the program’s oncology focus into something that made sense in nephrology. It felt impossible, not because cancer is more serious than kidney failure—kidney failure has no cure either and dialysis patients die at a rate nearly twice that of many cancer patients. Rather, I found it impossible because of the knowns of oncology that simply weren’t the case in nephrology. In oncology, it is known with some certainty how long a person can expect to live depending upon the kind of cancer and how far it has spread from where it started. In oncology, it is more or less known what side effects a particular chemotherapeutic agent will have on patients in general.
In nephrology, dialysis creates a limbo. It is difficult to predict exactly how dialysis will affect the individual patient. Some who we expect to be miserable on dialysis do just fine. Some who we expect to do just fine suffer. Though some dialysis patients die faster than cancer patients, some live decades on dialysis. Some would live just as long without dialysis as with it. And some would die within days without it. So because we are not sure, we tend to start dialysis by default.
When I met Mrs. Durante in the pre-dialysis clinic, she was spending most of her time in a wheelchair since a long, complicated hospitalization three years prior left her there. The long hospital stay was followed by an even longer stay in a nursing home, which she said felt like torture and nearly killed her. She never wanted to go back.
She was only sixty-three in chronological years, but as I read her medical record and looked at the frail, listless-appearing woman before me, biologically she seemed closer to her mid-seventies. She’d had strokes. She’d had surgery on the bones of her neck to release the hold they had on her spinal cord. She had heart failure. Diabetes. So when she sat facing the fork in her road to complete kidney failure, she was unwavering in her refusal of dialysis. She’d had enough, she said.
Perhaps dialysis would not be beneficial in terms of adding quality or length to her life, I said, and proposed conservative management of her kidney failure. We could treat the symptoms of kidney failure as they arose without dialysis, accepting that eventually she would pass from kidney failure—if one of her many other health problems didn’t take her first.
Her pale blue eyes widened in surprise as if she expected me to argue with her, perhaps as the nephrologists who had seen her before me did.
Don’t say that. You will die without dialysis.
I’d rather die than go through that.
Don’t say that. It won’t be so bad.
No, no, NO! I don’t want it.
Instead, I had inadvertently called her bluff. Her poker face was exposed. Well, maybe a little dialysis, she conceded.
She chose peritoneal dialysis and her daughter Josefina would help her do it. Jo was the youngest of Mrs. Durante’s three daughters and completely devoted to her. I agreed that peritoneal dialysis was a perfectly rational choice too and was happy to support her in that decision as well.
I had softened from my original all-or-nothing way of thinking about dialysis: If very old or very sick, then don’t start it. If already on it and the patient becomes very old or very sick, then stop it. But the problem with all or nothing is that most in my experience tended to opt for all in the off chance or even delusional hope that all would restore the body to where it was before everything fell apart, or at least prolong its existence for a few more weeks, days, hours.
I’ve learned to think about peritoneal dialysis as an alternative to having to choose between frightening unknowns. Yes, peritoneal dialysis would involve a catheter being threaded into the space between skin and the peritoneal membrane covering the abdominal organs. Yes, the skin around the catheter or the peritoneal membrane might become infected, causing pain and sometimes fever and chills, but this is an infrequent occurrence. And, yes, the frail elderly patient would need a family member to do the required handling of dialysis fluid bags and connecting them to the catheter, but the dialysis itself would be much gentler.
There would be none of the dramatic changes in body weight of in-center hemodialysis as a result of liters of fluid being siphoned off in just three to four hours three times a week (because in a body unable to pee it out, the fluid only reaccumulates between siphonings). There would be none of the inevitable exhaustion after dialysis or cramping during dialysis. With peritoneal dialysis, the siphoning is slower and of smaller amounts over the course of every day. And peritoneal dialysis can be tapered off gradually without the fear of rapid death triggered by an in-center hemodialysis treatment or two.
In a 2008 study published in the Clinical Journal of the American Society of Nephrology, researchers found that if dialysis providers answered “no” to the question “Would you be surprised if this patient died in the next year?” the patient was 3.5 times more likely to die within the year. Given Mrs. Durante’s desires to avoid interventions and my “no” response to the “surprise” question, I employed what a few colleagues and I have termed a palliative approach to dialysis care. My goal was her goal—to get her feeling better. Lessen the nausea. Improve the fatigue. I didn’t worry about achieving the standard metrics that defined quality care for dialysis patients but made her feel worse. For example, a blood phosphorus level of less than 5.5 was the standard of care, but the large pills that bound phosphorus in the stomach before it could be absorbed into her bloodstream—phosphorus binders—made her gag. I told her that her phosphorus of 6 or so was OK. Sure, rigorous adherence to dietary phosphorus restrictions would have minimized the need for the binders, but I told her it was OK to have a bit of her favorite ice cream. After all, the intention of the goal and other standard metrics was to minimize complications that happened over the long term and maximize survival. Mrs. Durante, I knew, did not have a long term. Her goals and mine were to maximize how well she felt and how much she could enjoy life. Sometimes that meant minimizing the parts of dialysis care that got in the way of those goals.
Had she chosen hemodialysis, I would have taken the same approach. I would have blatantly disregarded the mantras of “fistula first” and “catheter last.” Sure, pushing her to have a fistula created or a graft put in certainly would have decreased her chance of getting an infection, but it also meant getting stuck with two needles three times a week and painful procedures required more often in older patients to keep it working. If she always started cramping in that third hour of dialysis, I would have stopped it at two, even if that meant her blood pressure was a little higher than it was supposed to be because we didn’t have time to siphon away all the extra fluid in her body. Even if that meant the blood test said she wasn’t gettin
g “adequate” dialysis. I would have stopped getting so many blood tests in the first place.
Many if not most of my colleagues would not agree with me. They would accuse me of substandard care because they believe in the goodness of dialysis and that any downsides of it are worth it. They believe in one size fits all. Palliative care is equated with giving up, something you resign your patient to when there is nothing else left to do.
And then there’s the money.
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.
Not that every nephrologist starting a frail, eighty-something-year-old with failing kidneys on dialysis is doing it for the money. Many would truly believe that is the right thing to do. But as one nephrologist said, “I’d dialyze a tree if they paid me for it,” I can’t help but think that if thoughtful, prolonged, and repeated conversations with patients and families about the realities of end-stage kidney disease and dialysis were financially incentivized instead, we would be less quick to put and keep people on dialysis when it is unlikely to benefit them in terms of quality or length of life.
Despite my efforts, Mrs. Durante continued to have some discomfort. In her first few yards down the path of peritoneal dialysis, she encountered peritonitis. The skin around her catheter and her peritoneal membrane became infected. She had pain and fever and chills. Her shoulders slumped and she looked up at me with a sigh that said You’re making my life worse with this.
“Hang in there,” I encouraged, and with appropriate antibiotic treatment, she was able to get past it.
Her nausea never fully went away. She had trouble swallowing even the chewable and powdered forms of binders. And it took a while to calm the painful itchy rash in the fold beneath her hanging belly.
All that said, what was happening was not so bad compared to what she had already come through, and she was able to feel well enough to begin enjoying life again. She and Jo were even able to go to the opera regularly. There appeared to be weeks of happiness between bouts of her various ailments.
But two summers later she needed to be in the hospital—for weeks. She became weaker and weaker. She used to be able to push herself to a stand using the arms of her wheelchair, take two steps, and sit down again in a different chair. Now such a feat would require at least two strong-backed bodies to make it happen. She had to face the reality that going home, at least for a while, was not an option. Skilled nursing facilities could not do peritoneal dialysis, so not going home meant she would have to switch to hemodialysis.
Going to a skilled nursing facility again and doing hemodialysis. Two things Mrs. Durante had said she never ever, never ever ever wanted to do, so I began talking with her about the option of stopping dialysis. What symptoms she might have if she stopped. How much time she might have. On average people with no kidney function who stop dialysis die in eight days. She had a little kidney function left, so she probably would live a bit longer. I didn’t know how much longer she might live if she continued dialysis. I only knew it would be hard.
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. It’s not surprising that we nephrologists are uncomfortable with diagnostic uncertainty given that nephrology is a field rife with equations. There are equations to calculate how much water the dehydrated body needs, more equations to calculate what percentage of the body’s sodium is being peed out, and still more to calculate how well the kidneys are filtering. Somehow we are able to talk about these calculations freely and confidently even though they are just estimations. 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. To ask patients and families to make decisions in the abstract, with no knowledge of what might come of them, is at best cowardly of us nephrologists. At worst, it is a clear demonstration of detachment, a sign that we are not in it with them. 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.
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.
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.
This didn’t feel like my experience with Mrs. Durante. I tried to figure out her goals and align her care with them, but it is interesting what we become willing to put up with when the universe calls our bluff on I’d rather die. Then all that really, really mattered to her was being able to enjoy food.
So her peritoneal dialysis catheter was removed and she was transferred to the nursing home with a hemodialysis catheter in her chest instead. Then, in and out, in and out from the nursing home to the hospital she went every few days for the next couple of months. She was short of breath. She had chest pain. She was dizzy. Her bottom burned with deep ulcers and uncontrollable diarrhea. Her time was spent staring at the walls or the television. She lost her appetite and wouldn’t eat. She refused to work with physical therapy. The possibility of ever getting strong enough to go home was becoming less and less a realistic hope.
I went to see her in the hospital and broached the subject of stopping dialysis again.
“Remember when you said you always wanted to be able to enjoy food? You aren’t eating anymore,” I reminded her. Soon even when she tried to eat, she couldn’t reliably swallow without choking. Her food needed to be pureed.
“I am suffering,” she acknowledged. “All I do is stare at the walls. There is no enjoyment.”
“We can always change what we are doing,” I said.
“No,” she
said after a few days. “I will keep going.” Enjoying food, she had decided, wasn’t that important anymore. She had even convinced herself that the pureed turkey she had for Thanksgiving was good. Then what really, really, really mattered was being around to see her first grandchild born.
“Is anybody pregnant?” I asked Mrs. Durante, trying to assess how realistic this new goal was. I was prepared to apply my newly acquired PCEP skill of asking “And what else” until we arrived at a goal that we realistically had a shot of achieving.
One of her daughters was married and trying to get pregnant.
“OK.” I smiled. “That sounds like a wonderful goal.”
Mrs. Durante was discharged to a nursing home but did eventually make it back home and even back to peritoneal dialysis. Then in and out, in and out, this time from home to the hospital she went with shortness of breath that doctors thought might get better with more fluid removed with a little extra dialysis, a breathing treatment, or maybe some antibiotics. Sometimes she went to the hospital with dizziness that doctors thought might lessen with a little more fluid given back. She was never home for more than a couple of days. But I had stopped trying to have conversations with her about how she hoped to live out the rest of her life.
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.
Hundreds of Interlaced Fingers Page 18