A Time for Heart to Heart Conversations With Family and Caregivers
An essay I read when it was first published in the New York Times Magazine in 2010, “What Broke My Father’s Heart,” has stayed with me. It is the deeply personal tale of a journalist-daughter’s observation of her father’s last years, as his pacemaker kept his heart pumping while dementia destroyed his quality of life. The daughter, Katy Butler, later turned the story, supplemented by impressive research, into a book, Knocking on Heaven’s Door: The Path to a Better Way of Death.
In the essay, one of the key moments in the chronology was when Katy’s father faced the prospect of surgery for a painful inguinal hernia, which doctors were not willing to perform unless his weak heart was first aided by implementation of a pacemaker. Earlier, his father, while still competent, had rejected a pacemaker, but the decision was now in the hands of his wife because of his dementia:
“When [Dr.] Rogan suggested the pacemaker for the second time, my father was too stroke-damaged to discuss, and perhaps even to weigh, his tradeoffs. The decision fell to my mother — anxious to relieve my father’s pain, exhausted with caregiving, deferential to doctors and no expert on high-tech medicine. She said yes. One of the most important medical decisions of my father’s life was over in minutes.”
Ms. Butler makes it pretty clear that if the decision had been hers alone, she would not have made the same choice as her mother. Additional research demonstrates the medical, moral and legal dilemmas faced by all parties in considering the use of pacemakers for the elderly. For example, in “Pacing Extremely Old Patients: Who decides — the doctor, the patient, or the relatives?,” two physicians in the U.K. report on a three-case study where individuals, family members and doctors were not in agreement about implantation of pacemakers for patients aged 101, 90, and 87.
If you are still reading you may have guessed that I’m writing on this topic today for a reason, because my own father, age 90, has dementia and a pacemaker, implanted many years ago, by his choice, following several dramatic episodes of syncope while his mind was still healthy. The medical history on his device, which does not include a defibrillator, but which uses low current electrical stimulations to respond to slow heart rhythms, demonstrates that the pacemaker has, in fact, been doing its job on a very regular basis. Research explains that blood circulation is important for movement and elimination of “unwanted metabolic byproducts,” thus further helping the heart muscle to function. As one cardiologist explains, with helpful medical details, “The purpose of a pacemaker is simple….”
My father’s doctors now say that the time has come for a new unit, as the battery in Dad’s pacemaker is getting low. This will involve surgery, but not as invasive as implantation, as the leads to the heart are already in place. At the same time, this means that my father will face transport and hospitalization, even if the procedure is treated as day surgery. And the last time Dad was in the hospital, he made it pretty darn clear to me that he never wanted to return. On the other hand, while talking with a colleague, I learned that his father, age 95, is having his pacemaker’s battery changed this week, a reminder that a patient’s age, standing alone, is not necessarily an issue.
I suspect Katy Butler’s essay has stuck with me all of these years for a reason. I knew we would probably face this moment for another heart-to-heart conversation as a family. We meet with the doctors next week to discuss all of the options.