For “I Remember,” David McRay tells the moving story of a patient’s death, one in which David was both attending physician, as well as grandson.
Going Home: Remembering My Grandfather’s Decision to Stop Dialysis
I remember his last words. Or, at least, these are his last words I remember.
“I’m ready. Let’s go home.”
In the fall of 1991, my grandfather’s physician discovered on a routine blood test that a measure of his kidney function – his creatinine – was elevated. By Christmas, his discomfort was evident to all of us. He seemed restless and disturbed, frequently changing positions and quietly scratching his skin. But, he was certain that his condition didn’t warrant anyone’s concern.
The months following Christmas were filled with additional visits with his doctor, referral to larger medical centers, and, finally the kidney biopsy. We talked then, as we had on a few occasions before and many thereafter, about his health and the reasons for the various tests and procedures that were being recommended. I was a young family physician practicing in a small, rural east Tennessee community four hours from his home, and I was eager to help. I tried to answer his questions and encouraged him to ask more of his doctors.
My grandfather was always aware of the limits of his 8th-grade education. He was concerned that he could not communicate well with his physicians. As a result, I gradually began to serve as his interpreter. I would try to translate what his physicians said into a language he could understand, and occasionally, when asked, provide my opinion about what was happening to him and what he was being told. He was beginning to understand that he was ill and that his illness would require ongoing management. He was, however, hopeful, perhaps even confident, that this was an illness that could be cured.
Unfortunately, the biopsy revealed a nonspecific form of glomerulonephritis – inflammation of the kidneys – untreatable and incurable. Many questions followed: “What did I do wrong? Is it a result of my diet? What should I do now?” Medications were prescribed, and dietary recommendations were made. Reluctantly, he began to understand and accept that the condition could not be reversed. His goals, and all the conversations with his family, focused on the management of his illness and avoiding dialysis.
But, his condition worsened, and by the second autumn, he had no choice. The itching and fatigue were incapacitating. If he wanted to feel better – in fact, if he wanted to stay alive – he had to begin dialysis. He did not understand what was being offered, how it would work, or how it would feel. He asked very few questions and understood little of the explanations that were offered. He grieved over what dialysis did to his life – to his freedom, independence, and opportunities for service. The treatment was never described as a form of life support with all the customary conversations about indications, alternatives, ethics, and options for withdrawal. It was simply the next step in the management of his illness. A step he felt forced to accept but never really did.
Three days a week, my grandparents would leave home early in the morning and make the one-hour drive to the dialysis center, greet the staff, and submit to “misery,” the word he used to describe the way dialysis made him feel.
Miserable though he was, he made the best of the situation, as he had always done with every hardship he encountered in his life. For two and a half years, he was able to drive himself to dialysis most of the time. He still traveled some – an occasional trip to visit his son in Nashville or his daughter – my mother – in Chicago, even a four-hour bus trip to see me. He maintained his place on the county board of education, but gradually withdrew from his leadership role in his church, a position he had held for thirty years.
Then … a stroke changed everything. It was an irreparable blow. An ambulance trip and brief evaluation in the local hospital emergency room were followed by transfer to Baptist Hospital here in Nashville, where my grandfather remained hospitalized for two weeks. He was discharged to a rehabilitation hospital and then an extended care facility, and finally, at his insistence, he returned to his home, in a small, rural community at the foot of Monteagle Mountain. He became dependent, unable to attend to his most basic needs. His dignity was under attack; his spirit broken.
Many more decisions followed. The management of any chronic illness requires that attention be given to innumerable details, and everyone thought his illness would be chronic. His thoughts, however, seemed to be moving in a different direction, ahead of his family and physicians.
I did the best I could to answer his questions. The conversations were difficult ones. He did not have the strength to talk for very long on any given occasion. While all those around him labored to fix his broken story, my granddad began to quietly draft its final chapter. I think he had, for some time, been preparing himself for the last scene of his life, a scene he would write. The place was chosen. He would be at home. The time was still to be determined.
On October 22, 1996 – six months and four days after the stroke – my grandmother passed away quietly, and quite unexpectedly, in her sleep. Suddenly, his companion and best friend for the past sixty-one years – his reason to go on living – was gone. We buried her two days later. As Granddad sat, in his wheelchair, among the hundreds of flower arrangements that encircled her grave, he was deep in thought and very sad, contemplating – I am certain – the three questions that would organize the next two weeks, his final two weeks.
“What will happen if I don’t go back to the dialysis unit?”
“Will I suffer?”
“What about the ‘suicide clause’?”
The next day, I welcomed, with caution and awe, the privilege of discussing his concerns with him. I was not a philosopher, theologian, or ethicist. I was his grandson and a physician, and I was increasingly being asked to be a physician to my grandfather. The journey we were taking was moving into strange, new waters. As we talked, I was careful to go only as far as he went. I did not present new options. I sought only to accompany him on his journey and assured him that I would remain at his side, no matter what.
We shared a faith tradition, one he thought had a “suicide clause.” Was this suicide? Was it prohibited? I did not think so, and I tried to explain why. I encouraged him to talk with others. My granddad was not a man given to rash or hasty decisions. A careful and thoughtful person, he approached this decision in the same manner he had so many others
During the days that followed, we spoke on several occasions, and, to the extent that his condition would allow, we worked our way through the possible answers to each of his questions. We discussed other situations in which patients make decisions to withdraw life-sustaining medical care such as mechanical ventilation and tube feedings. He concluded that for him discontinuing renal dialysis was similar to discontinuing a breathing machine in the face of an irreversible, terminal illness.
I spoke frequently with my mother and her brother, and with a close friend – a medical ethicist – who asked the important and hard questions about my thought, emotions, and intent.
The physicians in my granddad’s little town had not been of much help to him since he began dialysis. His kidney specialist was too far away to provide the care he needed now. Hospice services were not available in Franklin County, Tennessee, in 1996. So, signing the necessary papers, I assumed responsibility for my grandfather’s care. I discussed our plans with the home health nurse. The day for his next dialysis treatment came and went.
My grandfather’s final three days were filled with very special moments. He was surrounded by his family, sharing stories and special foods. On the third day, as the end neared, we took turns sitting on the floor beside him. I never moved farther than the next room. When his mouth filled with saliva, I would suction it carefully. When he awakened and groaned, I eased in a spoonful of morphine and wiped his lips.
His comments became less frequent and less coherent. He said, “So far, so good.” He spoke of my grandmother, recalled his beloved mountains, and tried to sing a favorite hymn, “The Way of the Cross Leads Home.” By the afternoon, he was much weaker, and awake less often. He said, “C’mon, let’s go home.” His wife had died at home, asleep in her own bed. He was choosing to do the same.
“I’m ready. Let’s go home” were his final words; the final words I remember. He slept after that. He did not arouse again. I moved across the room, sat in a chair, and watched with quiet reverence; allowing space for my uncle and aunt and my mom and dad to sit beside him and allowing me to maintain some measure of professional distance. That was my grandfather dying on the couch. But he was also my patient; a patient nearing death. I was the physician managing that death. Until our task was complete, I wanted and needed to protect my objectivity.
The end came quietly. Some of those present had never before witnessed a death. Startled, they looked to me for an interpretation, a diagnosis, a verdict. My solemn nod unlocked the door to their grief.
Together, his church, community, friends, and family allowed my grandfather to go home and stay home. With grace and courage, he overcame the obstacles presented by the rural location where he lived. With hesitation and gratitude and with some sense of urgency and necessity, I overcame my uncertainty about the dual roles I was asked to play. I was honored and humbled by the privilege of helping my grandfather write the final chapter of his story. I believe he wrote it well.