End of life decisions–becoming your grandfather’s physician in rural Tennessee

–David McRay
Dr. McRay tells the story of helping his grandfather decide to end dialysis and agreed to be his physician so he could die at home. ..

As his creatinine level rose, his hematocrit fell, he had no choice. With the itching worse and the fatigue incapacitating, if he wanted to feel better—in fact, if he wanted to continue to live—he needed to begin dialysis. He did not understand what was being offered, how it would work or how it would make him feel. The therapy 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.

The nearest dialysis center was in a town forty-five minutes north. Three days a week, my grandparents would leave home early in the morning and make the trip to 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 and for two and a half years, he drove himself to dialysis most of the time.

A stroke changed everything. He awoke that morning with some troubling weakness and numbness in his right arm and leg. An ambulance trip and brief evaluation in the local hospital emergency room were followed by a transfer to the major medical center in Nashville where my grandfather remained hospitalized for two weeks. He was discharged to a rehabilitation hospital and then an extended care facility. He never suffered from a severe loss of function, but he became dependent, unable to attend to his most basic needs. His dignity was under attack; his spirit broken.

When his wife of sixty-one years passed away in her sleep, he asked, “What will happen if I don’t go back to dialysis?”

“I don’t know” was the only answer I could provide. I had never encountered this circumstance before. I knew he could delay his treatment a day, maybe two. A few days later, I spoke with a nephrologist in my community. She seemed very uncomfortable with the conversation and described the difficult deaths of two patients who chose to stop dialysis during her fellowship. Beyond that she offered little.

Granddad approached this decision in his usual careful and thoughtful manner. We continued our conversation and I tried to answer his many questions. We referenced the Christian Scriptures, talked about his relationship with God, and spoke of the confidence with which he felt he could approach the end of his life. 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 mechanical ventilation in the face of an irreversible, terminal illness. His kidneys had failed and would not recover. His life was without joy and now devoid of the experiences that had given it rich meaning for almost eight decades. Existence was limited to restless sleep on the bed or the sofa with painful, exhausting, and embarrassing trips to the bathroom.

Dr. McRay’s grandfather was enrolled in hospice and Dr. McRay agreed to become his grandfather’s physician so he could die at home. ..

The morphine and the hypoxia-induced sleep kept him unaware of the fluid that was filling his lungs. “I’m ready. Let’s go home,” were his final words. He slept and did not arouse again. His son held one hand and his daughter the other. I moved across the room and sat in a chair, watching with quiet reverence. This location provided my parents, aunt, and uncle enough space to be at his side. Perhaps the move was symbolic as well. My grandfather was dying on the couch, but he was also my patient. I needed to maintain some space, to hold on to the equinimitas I had found. Until my task was completed, I wanted and needed to protect my objectivity.

The end came quietly. Some of those present had never witnessed a death before. Startled, they looked to me for an interpretation, a diagnosis, a verdict. My solemn nod unlocked the door to their grief. Together we—his family and friends, his church and community, and me as his grandson and physician— 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.

Dr. McRay explores a number of important issues: ending life sustaining treatment such as dialysis, managing the dual roles—grandson and physician, the value of religion in exploring the big questions in life. In today’s world technology creates benefits and burdens. We can extend life, but those days and months are sometime more quantity than quality. Dr. McRay helped his grandfather decide to quit dialysis. Have you witnessed or been part of such discussions and decisions with patients? What did you learn? What will you take away from this essay as you help patients explore how they want to die and make decisions about resuscitation, intubation and advanced directives? How is religion and spirituality helpful to patients who have a faith?
Dr. McRay negotiates his dual role more carefully; this is explored more fully in part of this essay that is not included in the blog. What are important considerations for managing the dual roles?

Published in The Country Doctor Revisited (Kent State University Press, 2010) used with the permission of the author

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