A patient with ESRD avoids dialysis in favor of a “peaceful death,” but the real

A patient with end-stage kidney disease avoids dialysis in favor of a “peaceful death,” but the reality is far from expectations.
Medical Myths: Unprepared For The End Stages Of End-Stage Kidney Disease
Farrin A. Manian1
+ Author Affiliations

1Farrin A. Manian (fmanian@partners.org) is a clinician educator in medicine at Massachusetts General Hospital, in Boston, Massachusetts. This article is dedicated to his dad, who gave a helping hand to countless numbers of people throughout his life and whose courage to face adversity was an inspiration to the very end.

A patient with end-stage kidney disease avoids dialysis in favor of a “peaceful death,” but the reality is far from expectations.

Home Care Medicine/Clinical Issues Personal Experience (-Narrative Matters-)
The news wasn’t good. The choice was either dialysis or die in three months. At the age of eighty-seven, Dad was part of the ever-dwindling “greatest generation” of men and women who served their country by fighting in World War II. And like many in this generation, he had declining health. Decades of smoking cigarettes—beginning after he joined the military—caught up with him years later, in his sixties, when he was diagnosed with coronary artery and peripheral vascular disease. Despite these setbacks, he entered the eighth decade of his life relatively healthy compared to many of his contemporaries, who seemed to spend much of their lives in hospitals or nursing homes. As Dad grew older, his definition of quality of life became simpler: maintaining his health; living in the comfort of his home with the love of his life, my mother; reading his daily newspapers; solving Sudoku puzzles; watching his favorite sports teams on the television; indulging in my mother’s culinary delights; listening to Johnny Cash; and getting behind the wheel of his favorite toy, an ever-spotless metallic gray Chevy Suburban.

In retrospect, the first indication that something might have been amiss with Dad’s health was when my mother grumbled that he was taking too many naps during the day despite sleeping soundly at night. I wasn’t worried at first; after all, he was going on eighty-eight, and a recent visit to his doctor had not turned up any surprises. But when Dad began to consistently fall behind in reading his newspapers, many left in their original plastic wrappers, I became concerned and wanted to know why. “I just don’t feel like reading the paper much anymore,” he replied. As an infectious disease physician who frequently searches for answers to medical enigmas, I did not accept his response and asked him to undergo a few basic blood tests, to which he reluctantly agreed.

A few days later, when I received the results in my office, I was in for a surprise: His renal function had deteriorated considerably, nearing what is considered end-stage kidney disease. Looking back, I shouldn’t have been so surprised. After all, more than half of the population older than age seventy-five is reported to have chronic kidney disease, and the number of octogenarians and nonagenarians developing end-stage kidney disease has been rapidly increasing in recent years.

That evening I stopped by my parents’ house on the way home to share the unwelcome news. Dad listened carefully, and, after a long silence during which my mother refused to break her blank stare at the kitchen floor, he asked: “What does it mean, Son?” I hedged. I told him that it’s often hard to know what to make of a single lab value, that the blood test should be repeated, that even if his kidney function was getting worse, it wasn’t the end of the world, that there were a lot of reversible causes for kidney disease, and so on and on. Despite my caveats, my parents’ fears were palpable. I could not blame them.

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Reality Strikes

I made an appointment for Dad to follow up with his primary care doctor, but before his appointment, he was hospitalized for shortness of breath and swollen legs as a result of his deteriorating kidney function. After days of inpatient workup and a multitude of diagnostic tests, including a kidney biopsy, his doctors could find no reversible cause for his kidney failure. “Old kidneys” was the final diagnosis, and with it his medical team began a preparatory discussion of whether Dad would pursue dialysis.

Dad was bombarded with a barrage of abstruse medical terms such as “uremia,” “hemodialysis,” “shunt,” and “fistula” and asked for my help in understanding the medical jargon. As I explained what dialysis actually entailed, he seemed surprised to hear that placement of a vascular access for dialysis required surgery. Similarly, he seemed shocked when he heard that hemodialysis usually meant going to a dialysis facility several times each week and getting connected to a “blood-purifying” machine for several hours, and then often repeating this weekly routine for the rest of one’s life. During one of the early encounters with his doctors after learning of his diagnosis, he asked how long he would be expected to live if he decided against dialysis.

“Three months,” he was told.

“Am I going to suffer if I don’t get dialysis?” he asked.

He was offered the same response that I had given to many of my patients and their family members frequently over twenty-five years of practice: Dying from kidney failure is often painless and peaceful, with some even regarding it as a “good death.”

But Dad could not wrap his arms around the act of dying from kidney failure. He was familiar with heart disease, stroke, cancer, and “old age” claiming the lives of many of his relatives and friends, but he could not recall anyone dying of kidney failure. One night I found him lying quietly in his hospital bed staring at the wall. I sat next to him on his bed. Finally, he spoke.

“What’s my life going to be like if I go on dialysis, Son?”

Throughout my professional life, I had been involved in the care of hundreds of patients on hemodialysis. I had seen firsthand how it saved many lives, but I had also witnessed its complications, such as clotting and infection of the vascular access, frequent hospitalizations, bloodstream infections, and severe exhaustion following a hemodialysis session. To my father, I tried to convey a balanced view: Dialysis is life-saving but often comes with a price that some may not accept. Dad wanted specifics about what his life expectancy would be if he proceeded with dialysis, something he did not recall discussing with his medical team. I didn’t know the answer. After a quick literature search later that night, I learned that the median life expectancy among those ages 85–89 after starting dialysis may be no more than a year—or even shorter for those with cardiovascular disease. I reluctantly shared my findings with him the next day. “That’s no good,” he said, shaking his head in disbelief.

Dad’s breathing improved after several days in the hospital, but overall he felt poorly. He was weak. His gait became increasingly unsteady. Daily reminders of his deteriorating physical condition further fed into his frustration. One day, while still in the hospital, he snapped at a physical therapist for trying to “force” him to walk when he found it even difficult to get out of bed. When the therapist said she would let her boss know that he refused to cooperate, he became increasingly irritated.

“I don’t care. Tell your administrator, too!” he lashed back, his temper rising. “I am not just an old man. I am an angry old man!”

His anger was understandable. He was traveling down an unfamiliar path and seemed conflicted. He worried about what might happen to my mother, who depended on him for many aspects of her life, ranging from paying the bills to going to stores. He also worried about losing his dignity and independence, and becoming a burden to his family if he opted for dialysis. His desire to retain his dignity during this phase of his life did not surprise me. After all, despite years of cramping in his leg even during short walks, he refused to use his wheelchair or scooter unless he deemed it absolutely necessary. He despised the idea of having to use an assistive device in public, lest his struggles be construed as those of a “cripple.” Now he was faced with the choice of another assistive device: the hemodialysis machine.

After realizing that there were no assurances that his quality of life would improve with dialysis, and that Mom would be cared for even after he was gone, Dad made his decision. He wanted to go home and die peacefully. Mom wasn’t entirely on board with Dad’s decision. She thought it was tantamount to “giving up.” But she respected it. Dad came home with a plan for conservative management of his symptoms and hospice care.

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Home Without Dialysis

Following his release from the hospital, I visited Dad daily and helped Mom with his care. After years of caring for patients with end-stage kidney disease, for the first time I found myself on the other side of the fence, observing firsthand the impact of this disease on the life of a patient and his caregivers at home. I expected Dad to gradually become lethargic as his uremia (a buildup of toxic substances in the body as a result of kidney failure) worsened. On the contrary, he remained fully alert and began to experience a new and unpleasant symptom every couple of days, not replacing but adding to those that preceded it. He complained of being constantly cold. He had body aches. He had increasing difficulty getting out of bed. He became short of breath with very little exertion. He developed mouth sores and had difficulty swallowing. As a result he did not wish to eat, much to the chagrin of my mother, who had looked forward to cooking his favorite meals. He developed a painful sacral ulcer that defied meticulous wound care.

Hand tremors and episodic body jerks soon followed, along with headaches, anxiety attacks, itching, difficulty urinating, constant nausea, and indigestion symptoms. He became wan and withdrawn, and gone were his desires to read the newspaper, watch his favorite sports team on the television, work on Sudoku puzzles, or listen to Johnny Cash. But despite being in his frail state, he still wanted to get behind the wheel of his Suburban and take my mother for a drive before he died.

Mom could not readily accept the rapid physical deterioration she had witnessed in my father over just a few weeks and had not yet given up hope for recovery, against all odds. She wanted to be able to talk with him as she had done for more than forty years and yearned for the day when Dad could once again drive her to her favorite stores. She tended to his needs day and night and kept a vigil by his bed, too worried that something bad might happen if she took her eyes off of him. She was physically and mentally exhausted, and soon I became concerned about her health, too.

Dad’s symptoms were following a trajectory that was far from our expectation of a peaceful dying process. The use of “comfort drugs,” including narcotics and antianxiety medications, was encouraged by the hospice staff. We followed the recommended regimen but increasingly became uncomfortable with the seemingly binary options they afforded my father: either be aware of his surroundings and suffer from a multitude of physical and mental symptoms or become sedated and deprived of the ability to communicate with his loved ones during the final stage of life. Dad had accepted that he would die but was indignant about the manner in which he was dying. One day, with legs too weak and wobbly to get to the bathroom on his own, he looked at me and said: “Why do we have to go through this shit, Son? I’ve never felt like this before.”

I had no simple answers. It seemed that even years of training in the military had not prepared him for the final battle of his life, for a peaceful death.

Six weeks after returning home from the hospital, Dad woke up complaining of an excruciating, painful pressure in his chest that radiated to his arms. It seemed that the stress of his illness was taking a toll on his heart as well. After several doses of narcotics and a generous dose of nitroglycerin paste, his pain finally abated. Two days later he developed a high fever and pulmonary congestion, suggestive of pneumonia. Soon thereafter, his breathing became more labored. By dawn the following day, he became less responsive and no longer needed any comfort drugs. His breathing became erratic, and after a few hours he took his last breath. Peace had arrived.

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A Lack Of Information

My dad received compassionate care from his doctors, nurses, and other health care providers, including the hospice staff. But the complexity of his dying process with an ever-increasing burden of symptoms until the very end belied the concept of a “peaceful death” that I had so often associated with conservative management of end-stage kidney disease.

In retrospect, neither my dad, my mother, nor I had adequately prepared ourselves for the journey that ensued after his release from the hospital. I, along with his medical team, had overestimated the “calming” power of uremia. Many online resources available to patients with end-stage kidney disease, and their families, do the same. Statements such as, “Usually, death from kidney failure is relatively peaceful” (from Robin Marantz Henig’s 2005 New York Times magazine article, “Will We Ever Arrive at the Good Death?”) or “knowing that death can be pain-free and peaceful for the person with end stage renal disease, helps ease family members’ fears” (from DaVita Kidney Care’s article, “What Happens If Someone Stops Dialysis?”) are not uncommon. These claims also often fail to distinguish the relatively brief average life expectancy of patients with end-stage kidney disease who begin and then cease dialysis, which could be a matter of days, versus the much longer life expectancy and possibly heavier symptom burden of those who never receive dialysis in the first place, which data show could be a matter of weeks or months.

There has been little study of the symptom burdens of patients with end-stage kidney disease whose illnesses are managed without dialysis. Most of the research to date has been done in the United Kingdom and suggests that the median number of symptoms during the last month of life for those with end-stage kidney disease managed without dialysis may be as high as twenty, and that the global level of symptom distress in these patients may actually be higher than that of patients with advanced cancer. There is even less published information on how best to effectively alleviate or at least manage these symptoms. Some evidence suggests, meanwhile, that kidney specialists are reported often uncomfortable talking with patients about end-of-life issues. This is not surprising, considering that only 1 percent of nephrology trainees have been reported to have had palliative care training, according to Ronald Werb in a 2011 article in Primary Care. Some specialists have concluded that there is a large unmet need to alleviate the many physical, psychosocial, and existential aspects of suffering among patients with end-stage kidney disease.

To Dad, hemodialysis represented an existential threat to his dignity, independence, and quality of life as he defined it. In this context, his decision against dialysis was understandable. But because of a lack of information—health system–wide—the last leg of his life’s journey was nevertheless unexpectedly turbulent and stressful for him and his family.

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Improving The End-Of-life Experience

The first step toward ensuring a better end-of-life experience in patients with end-stage kidney disease who decide against dialysis is to recognize that research in assessing the symptom burden and improving the quality of life of such patients during their final weeks of life is sorely needed. In the meantime, patients and their caregivers should be fully informed of the myriad symptoms that may ensue as uremia worsens. In this regard, the experience of those dying from end-stage kidney disease may be quite different from those dying from cancer, heart disease, or even other patients with end-stage kidney disease who decide to cease dialysis. As health care providers, we should also readily acknowledge that for many unpleasant symptoms of uremia, managing their severity, instead of alleviating them altogether, may be a more realistic goal, and that a “peaceful death” may never materialize. For these patients and their families, preparing for the expected should not be an elusive goal.
http://content.healthaffairs.org/content/34/9/1599.full