A doctor is shocked by his fathers struggle with end-stage kidney disease

The news wasn’t good. The choice was to begin dialysis or die in three months.

At 87, Dad was part of the ever-dwindling “greatest generation” of men and women who had served their country 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 in his 60s, when he was diagnosed with coronary artery and peripheral vascular disease. Still, he entered his 80s relatively healthy compared with many of his contemporaries, who were in and out of 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 my mother; reading his daily newspapers; solving Sudoku puzzles; watching his favorite sports teams on television; indulging in my mother’s culinary delights; listening to Johnny Cash; and getting behind the wheel of his ever-spotless metallic gray Chevy Suburban.

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In retrospect, the first indication of a health problem was when my mother grumbled that Dad 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 88, and a recent visit to his doctor had not turned up any surprises. But when Dad stopped regularly reading his newspapers, leaving many in their original plastic wrappers, I 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, a request to which he reluctantly agreed.

A few days later, I received the results in my office: His renal function had deteriorated considerably, nearing what is considered end-stage kidney disease. Looking back, I shouldn’t have been as surprised as I was. After all, more than half of the population older than 75 is reported to have chronic kidney disease, and the number of octogenarians and nonagenarians developing end-stage kidney disease has jumped in recent years.

That evening I stopped by my parents’ house 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.

Reality strikes

I made an appointment for Dad to follow up with his primary care doctor, but before that 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 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 raised the prospect of dialysis.

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Dad was bombarded with a barrage of abstruse medical terms such as “uremia,” “hemodialysis,” “shunt” and “fistula” and asked for my help in understanding them. As I explained what dialysis entailed, he seemed surprised to hear that placement of a permanent dialysis access 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, often repeating this weekly routine for the rest of one’s life. Shortly after learning of his diagnosis, he had asked his doctors 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 over 25 years of practice: Dying from kidney failure is often painless and peaceful, with some even regarding it as a “good death.”

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No good answer

But Dad could not grasp the concept of dying from kidney failure. He was familiar with deaths from heart disease, stroke, cancer and “old age,” 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 session. I tried to convey that balanced view to my father. Dad also wanted specifics about what his life expectancy would be if he proceeded with dialysis. I didn’t know the answer.

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With a quick literature search that night, I learned that the median life expectancy among those ages 85 to 89 after starting dialysis may be no more than a year, even less for those with cardiovascular disease. “That’s no good,” he said when I told him the next day, 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. Meanwhile, his frustration mounted. One day, while still in the hospital, he snapped at a physical therapist for trying to “force” him to walk when he had trouble even getting out of bed. When the therapist said she would let her boss know that he refused to cooperate, he lashed back.

‘I’m an angry old man!’

“I don’t care. Tell your administrator, too!” he told her. “I am not just an old man. I am an angry old man!”

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His anger was understandable. He was worried about what might happen to my mother, who depended on him for many aspects of her life, such as paying the bills and 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 was typical of him. Despite years of cramping in his leg even during short walks, he mostly refused to use his wheelchair or scooter in public, lest he be thought 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 thought that was tantamount to “giving up.” But she respected it. Dad came home with a plan for conservative management of his symptoms and hospice care.

Home without dialysis

Once he was home, I visited Dad daily and helped Mom with his care. It was the first time I had observed 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. But 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. He developed a painful sacral ulcer that defied meticulous wound care.

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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 lost all interest in the newspaper, Sudoku, sports or Johnny Cash. But despite his frailty, he still wanted to take my mother out for a drive in the Suburban before he died.

My mother

Mom could not readily accept his rapid physical deterioration and had not yet given up hope for recovery. She tended to his needs day and night and kept a vigil by his bed, worried that something bad might happen if she took her eyes off him. 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.

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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, son? I’ve never felt like this before.”

I had no simple answers.

Six weeks after returning home, 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. 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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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 belied the concept of a “peaceful death” that I had long 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.

Lack of information

I, along with his medical team, had overestimated the “calming” power of uremia. Many online resources 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, vs. 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.

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 system-wide lack of information, the last leg of his life’s journey was unexpectedly turbulent and stressful for him and his family.

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 is sorely needed. In the meantime, patients and their caregivers should be fully informed of the myriad symptoms that may ensue as uremia worsens and they should be counseled that a “peaceful death” may never materialize.

For these patients and their families, preparing for the expected should not be an elusive goal.

Manian is a clinician educator in medicine at Massachusetts General Hospital in Boston. This article was excerpted from the Narrative Matters section of the journal Health Affairs; it can be read in full at www. healthaffairs.org.

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