A parting lesson from my parents

Posted on 12/24/2015

Boston Globe — We often try to keep our personal and professional lives separate, but sometimes they collide unexpectedly. That happened to me over the complex and delicate issue of end-of-life care, where our health system still struggles to honor patient choices and values.

Five years ago, my father, Carl Dreyfus, died at the age of 92. He had been a local businessman, community activist, and loving husband and father. He lived with a pacemaker for three years but then showed increasing signs of congestive heart failure. Though his mind remained strong, he was less and less able to do the things that gave him pleasure — playing Cole Porter on the piano, reading biographies, tending the garden. His appetite suffered, and he slept for much of the day. Life was closing in on him in ways that he dreaded for himself and his family. When it became clear the end was approaching, he agreed to begin hospice care in his home.

My father and stepmother had once read an article about deactivating a pacemaker at the end of life, and now my father asked one of his cardiologists about that possibility. Unfamiliar with such a question, the doctor resisted. But after consulting with colleagues and attending a family meeting where my father again asked quietly if there was any way “to speed this along,” the answer was yes. The pacemaker could be turned off. Although still uncommon, such an action is consistent with national clinical and ethical guidelines, akin to withdrawing other treatments that prolong life.

A few days later — after careful planning with the hospice team — that is exactly what happened. On his last morning, my father walked downstairs as usual, ate a small breakfast, glanced at the newspaper, and returned to bed. When the cardiologist arrived, he wirelessly turned off the pacemaker that had been keeping my father’s heart beating at a normal rate. As his heartbeat slowed, he gradually lost consciousness. Throughout the day, his grandchildren sang to him to keep him company, and his children said goodbye. In the middle of the night, he died painlessly, his wife close by his side, just as he had hoped.

My father was following a path similar to that taken a few months earlier by my brother Nick. Nick had worked in radio and TV broadcasting and later in sales, but kidney failure stopped his career and imposed decades of illness, complications, and disability. He faced the rigors of dialysis, two failed kidney transplants, and many hospitalizations with courage and a tough independence. He retained his rich “radio voice” and boyish smile, but his body became frail. After suffering liver failure, he faced the likelihood that he would eventually require a transplant and also lose one of his legs. Nick decided instead to discontinue dialysis, knowing that it would lead quickly to his death. He entered a residential hospice program and died in less than a week, surrounded by his family.

Then, two years ago, my mother, Rosalind Dreyfus, died of cancer at her home, also supported by hospice care. She was private but adventurous and even after being diagnosed with an incurable lung cancer in her early 80s, she continued to lead a full life. Once, in her last few months, my mother vanished after a visit to the beauty parlor, much to the distress of her family. It turned out she was at a restaurant with some young friends, indulging in fried clams.

When her cancer spread and her health rapidly declined, my mother received limited radiation treatment but made it clear that she didn’t want to be hospitalized. And she wasn’t — not for a single day. Instead, she spent her final weeks at home, visited by a steady stream of friends and kindly supported with palliative treatment by hospice caregivers. At the moment my mother died, her three sons, her daughters-in-law, and her grandchildren encircled her in a final, familial embrace.

Each of these losses was excruciating, but my grief was softened because my parents and brother made decisions about their care and died gently, free from invasive medical treatment and touched by loved ones until the very end. Unfortunately, their experiences are not typical.

Read the full opinion piece by Andrew Dreyfus, President and CEO of Blue Cross Blue Shield of Massachusetts.