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My father, an aeronautical engineer and one of the designers of the reentry heat shields for the Apollo spacecraft, was extremely methodical. Even when doing projects around the house, he would measure and remeasure before making a final cut.
This logic also led to his being quite candid about other issues, so even before my parents became elderly and ill, we were a family who was not afraid to talk about death. Dad always told us that he wanted to die in his sleep.
Owing to damage from childhood rheumatic fever, his mitral valve was replaced just prior to his sixty-fifth birthday. By the time my parents reached their late 80s and I became their health care proxy, my father had developed heart failure and a defibrillator had been implanted.
Eventually, we placed my parents in an assisted living facility. About 6 months after they moved in, he was hospitalized and a cardiologist on his case told me: “The battery in his defibrillator is running out. He needs a new one.”
I spoke with his regular cardiologist on our next visit and he reiterated this. He said that the simple procedure would take a day or 2. There was no discussion about whether or not we should do it. According to a study published in 2014,1 this is quite common. Over half of the patients faced with replacing their defibrillators did not know it was optional. Of those, 27% would have considered not replacing it and like we did, 87% felt it was important to review the risks and benefits of replacing it.
We scheduled it for the week before Christmas. That would allow him to be back from the hospital in time for the holidays and the bi-annual weeklong visit from his only sister.
Based on the information I had been given, I had assumed only the battery would be replaced. Unfortunately, not until after the procedure was completed did I learn they had put in an entirely new device. As a result of complications, Dad had to stay in the hospital for a full week. He missed most of the holiday activities and his sister’s visit.
The last straw was when we learned of a distressing incident in which my father had started screaming one day while he was on the toilet. He jumped up and ran around their living room half naked. Then he sat down on his favorite armchair, screamed again, and defecated. The defibrillator must have gone off when he strained in the bathroom. He was being shocked when he was fully awake.
This could have been avoided if, prior to any life-extending procedures being performed on an 89-year-old man with minimal heart function, someone had asked about the kind of life–and death–my father wanted.
I realized that his young cardiologist in his 40s was focused on procedures and not quality of life. To him, “saving lives” meant taking action. The only time we returned to his office was when we realized it was possible to have Dad’s defibrillator function be deactivated, and I requested he do so.
Subsequently we chose instead to allow the geriatric physician at the facility where my parents lived to oversee their care. He became my greatest ally in my task as my parents’ health care proxy, because he understood well that aggressive treatment is not always best in people who are reaching the end of their lives.
During the last couple of years of his life following replacement of the defibrillator, my brilliant father became incontinent and lost much of his cognitive abilities. We established an advanced directive, including a do-not-resuscitate order. Thankfully, about a year after the defibrillator function was turned off, Dad died as he wished, peacefully in his sleep, four months after Mom had passed away.
I would hate to think how his last minutes might have been spent with the defibrillator shocking him repeatedly as he was dying.
How many physicians think to ask patients or their family members about what kind of life and death they want? Does anyone suggest that aging patients’ defibrillator functions should be deactivated to afford them a more peaceful death?
We could have decided to let the battery in the original defibrillator run out. All it would have taken was a short conversation about quality of life and Dad could have died with a little more dignity.
Corresponding Author: Pamela Diaconis, BA, Pamela Diaconis Mktg, 936 Hall St, Philadelphia, PA 19147 (firstname.lastname@example.org).
Published Online: May 23, 2016. doi:10.1001/jamainternmed.2016.1926.
Conflict of Interest Disclosures: None reported.
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Diaconis P. I Wish Someone Had Told Us the Risks and Benefits of Replacing My Father’s Defibrillator. JAMA Intern Med. 2016;176(7):885. doi:10.1001/jamainternmed.2016.1926
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