His death certificate doesn’t tell me how he died. The causes of death are listed as “end-stage renal failure,” “diabetes mellitus,” “hypertension.” Yet I have no idea what forced my father’s body to shut down, his heart to stop, on that given night.
He’d had a cold, my mother told me, and had gone to bed early in the spare bedroom so he wouldn’t keep her awake with his coughing. Did his cough give way to a silent heart attack? she wondered. We know more about what did not happen than what did. At no time did he shout for help, or cry out in pain. There was no harsh death rattle, no deep gasps for a final breath he couldn’t find. My mother sat not 10 feet away from him on the other side of a thin wall, reading a book; if he had called out for her, made any sound of distress, she would have heard, and gone to him.
When others begin to tell us that we should be thankful he didn’t suffer in the end, a memory rises up, the fragment of a prayer from an Orthodox liturgy I had attended with my parents: Grant us … a Christian and peaceful ending to our lives. It’s true that I had feared he would linger in pain for years. I worried about dementia, a stroke, a coma, the slow or sudden erosion of his mind or his memory; I dreaded the day when he would need more care than my mother could provide. I have just enough of what some would call perspective to be glad that none of these things happened, that the moment of death was the peaceful one he’d prayed for. But I cannot be grateful for how he died. He could have lived a hundred years, and I wouldn’t have been ready to let him go.
My mother and I don’t know the moment he took his last breath. The time of death I read on the certificate is not the moment his life ended but the moment the paramedics gave up trying to resuscitate him. I will never know for certain what happened that night. I know that he was sick, and had been on dialysis for six years. I know that he had a cold. I know that he went to sleep, and never woke up.
He was 67 years old.
Stable was what my mother would always say, when I asked her how my father was doing. Dad would tell me that he was about the same, or fine, or, more commonly, so wonderful you wish you were me.
He had been diagnosed with diabetes in his early 40s. I remember reading the pamphlets he brought home from the doctor, extracting promises from him about how he would learn to manage the disease. But our family was frequently without health insurance, and the medication he needed was expensive. As a restaurant employee, he worked long shifts, often missing breaks and meals. He had little free time for exercise, no money for a gym or nutritionist, and unless he felt very ill, he did not go to the doctor.
My parents didn’t want me to fret about the family finances—they thought that, because I was a child, it was none of my business—but there was only so much privacy in our 1,100-square-foot house. Growing up, I was aware that we never seemed to have quite enough—enough to pay off debt or keep every unforeseen problem from turning into an emergency. I knew when they lost jobs, when the unemployment ran out. What I took for stability when I was younger proved to be a shallow facsimile of it, a kind known to so many families, dependent on absolutely everything going right.
I doubt that my father, during the long years when he could trace no significant or debilitating issues to his condition, had either the luxury or the inclination to worry much about his health—or his lack of health care. Even when both my parents found themselves unemployed in their late 50s, their initial worry was not for Dad’s medications or missed checkups, but whether they would be able to pay their rent, buy groceries and gas.
That is, until my father grew very sick, the sickest he had ever been, and we had no way of figuring out what was wrong with him.
By then, I was a parent myself, a graduate student married to a postdoctoral fellow, living across the country from my parents. It was agonizing to confront how little I could do for them, with my attention and energy divided between the family I was raising and the one that had raised me. My mother and father were among the estimated 48 million Americans at the time with no health insurance, too young for Social Security and Medicare, and my father was in desperate need of medical attention. I tried to help them research available assistance, though they had always disparaged what they called “handouts.” We might as well have spared ourselves the time and trouble for all the good it did: They were denied Medicaid coverage. They were ineligible for the food and rental-assistance programs they applied for. If they’d had dependents, it would be different, one social worker told them, but as it was, well, they both just needed to find work.
My father had worked for most of his life and believed he still could if the right job came along, despite his overwhelming fatigue and swollen legs, constant upset stomach, and severe neuropathy. Hard as my mother and I pushed him, he only agreed to apply for Social Security Disability Insurance after two years of unemployment, when he began feeling so poorly that he had to spend much of the day in bed. I don’t think I imagined the note of satisfaction in his voice when he told me that his claim had been denied. He wanted me to know that I’d been wrong to pressure him—he had put his hand out, and it had all been for nothing.
Finally, my parents got my father on the waiting list for an appointment at a federally qualified health center. After examining him and ordering blood work, the doctor there got him an appointment with a kidney specialist who rotated through the clinic once a month. He was the one who finally diagnosed my father with renal failure, explaining that his kidneys had lost more than 90 percent of their function. If Dad hadn’t gone to the clinic when he did, the doctor added, he would have died within weeks.
A staff member at the nephrologist’s office had helped my parents submit another claim, and my father was at last approved for the Social Security Disability Insurance and state Medicaid plan he had been denied several months earlier. He began attending dialysis sessions three days a week at a nearby center. It did its job, first saving and then extending his life. But the ongoing treatments left him drained, more vulnerable to other illnesses and infections. We knew that he wasn’t thriving, nor improving. He was enduring.
Still, I put so much faith in that word, stable. Sometimes, when I wanted to reassure myself, I would remind myself of all that he was able to do.
He could care for himself during the day when my mother was at her part-time job. He could get up on his own, shower, get dressed. He liked to wear aloha shirts in the summer, thick sweaters and cardigans in the winter, and hats—baseball or bucket—year-round.
He puttered around the house, as my mother put it, taking care of small chores. He couldn’t bend over to clean the floors, but he could wash dishes and wipe down the counters. He couldn’t manage a lengthy trip to the grocery store, but he could prepare dinner for the two of them.
If it was a dialysis day, he would pack his bag of snacks and wait for the medical shuttle to bring him to the treatment center. If not, he might go sit out on the patio, listening to the radio, smoking one of the few cigarettes he still allowed himself, watching the hills change color in the shifting light.
He was happy to hear from me and chat whenever I called; unlike my mother, who began lobbing fresh questions as soon as I said I had to go, he knew how to say goodbye and mean it.
I had understood that he wasn’t going to get the long and comfortable life I wanted for him. But I believed we would get some sort of warning, a sign that death was imminent—a bad lab report would come back; the doctor would tell him that dialysis was no longer working. I never imagined that he would simply die, quietly, peacefully, in his sleep.
Many weeks later, a friend calls it a common American death. We are in her car, on our way to dinner, speaking of various conditions that run in our families. Both of us have seen our loved ones’ health problems exacerbated by financial insecurity, inaccessible medical care. She says that what happened to my father was tragic, and we talk about how it might have been prevented if only he had gotten the help he needed. How many people here, she says, die for the exact same reason every day?
I think of how many times I have heard terminal illness and death referred to as “equalizers,” as if they can flatten our differences and disparities simply because they come for all of us sooner or later. Sickness and grief throw wealthy and poor families alike into upheaval, but they do not transcend the gulfs between us, as some claim—if anything, they often magnify them. Who has the ability to make choices that others lack? Who is left to scramble for piecemeal solutions in an emergency? If you have no rainy-day savings or paid medical leave, if your support system is scant or under-resourced, if preventive or lifesaving treatment is hard for you to access or altogether out of reach, you will have a profoundly different experience than those who become seriously ill—or find themselves caring for sick or dying loved ones—knowing that, if nothing else, they can afford to meet the moment.
This is a country that takes little responsibility for the health and well-being of its citizens while effectively urging us to blame one another—and ourselves—for our precarity under an exploitative system in which all but a small number of us stand to suffer or lose much. A country that first abandons and then condemns people without money who have the temerity to get sick. It is still hard for me not to think of my father’s death as a kind of negligent homicide, facilitated and sped by the state’s failure to fulfill its most basic responsibilities to him and others like him. With our broken safety net, our strained systems of care and support, the deep and corrosive inequalities we have yet to address, it’s no wonder that so many of us find ourselves alone, struggling to get the help we need when we or our loved ones are suffering.
What killed my father, on paper, was diabetes and kidney failure: common indeed, the eighth- and tenth-leading causes of death in the United States in 2021, according to the CDC. But failing organs, life-threatening infections, death in his 60s—these were not inevitable outcomes, nor matters of pure chance and inheritance, an avalanche of genetic misfortune. He needed access to quality health care in order to manage and treat his illnesses. He needed it throughout his life, not only in his final years, when it was granted as a crisis response.
I cannot remember my last conversation with my father. When I called home in his final months, I would often catch him on his own while my mother was at work. No particular call stands out in my memory. My mother later said that our weekday talks had represented a turning point for him.
“He knew that he wasn’t doing well,” she told me. “I think he had decided that it was time to accept you, love you, forgive you for everything—and just be your father.”
The regret and anger I bear are a constant ache, fierce and gnawing and deep, so entwined with my grief that I cannot begin to parse where one feeling ends and another begins. Sometimes I want to ask my mother if she or Dad blamed me for living far away from them, or for not being able to help more. But I realize that I am afraid to hear the answer, and the question seems too great a burden to add to her grief.
I know that whatever my father experienced at the moment of his death, my parents’ choices were limited from the start. I know that I should not blame myself, any more than I blame them, because they were long unable to access the help they needed, trapped and ill-served by a broken system. Yet as their only child, one who grew up steeped in worry for them, I have long felt responsible for their well-being. My father’s death may have been a common one, but to me it was a shock, unprecedented and cataclysmic. It is still hard for me to accept how little I was able to do to prevent it.
This article has been excerpted from Nicole Chung’s forthcoming book A Living Remedy.
