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Respecting End-of-Life Decisions

Donahue, Nadine PhD, RN-BC, CNE

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AJN, American Journal of Nursing: June 2021 - Volume 121 - Issue 6 - p 11
doi: 10.1097/01.NAJ.0000753584.57524.29
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Abstract

Figure
Figure:
Nadine Donahue

David, a spry 89-year-old, was really struggling that day. He had made the decision to stay in his apartment and ride out the virus. He'd once run a large corporation, and although he'd recently been slowed by age and heart failure, he'd kept his quick wit. But at this moment, he was very sick and I was worried. I supported him as well as I could.

“You can recover from this,” I told him. “You need to fight.”

“I am fighting,” he replied, “but I don't want to die alone and in a hospital.” David had a living will with clearly defined end-of-life wishes.

“You will have great nurses caring for you if you go,” I told him, but he adamantly refused. His private physician and I continued to monitor his status and care for him. As he lived alone and had no children, I stayed at his bedside, helping him to eat, ambulate, and rest, with his physician in constant contact by telephone.

When I think of do-not-resuscitate status, I always think about someone dying from cancer or a heart attack, not a recently unknown virus, but never had he looked so frail. I had helped him to manage his heart condition for four years. That day, my job description changed from manager of care to complete caregiver. He asked me to hold his hand. He fell asleep, his breathing even but somewhat labored.

Throughout my career in nursing, and most recently in my doctoral program, there has been much discussion of a patient's decision about what they want their last days to be like. None of us really know how we will exit this world. End-of-life questions inevitably lead to the question of what constitutes a “good death.” Does the quality of time spent with family matter more than its quantity? It is often a hard conversation to have with patients or loved ones, but David and his physician had discussed his wishes many times in the years I'd taken care of him.

He was a widower who ate a low sodium diet, walked every day, and seemed to enjoy his life. But today he was running a high fever and struggling to breathe. As I made him as comfortable as possible, Tylenol for the fever and aches and oxygen for his shortness of breath, I wondered if he'd pull through. He continued to refuse my requests to take him to the ED. He'd always told me that he believed in a time to be born, a time to live, and a time to die. He was not going to be attached to a ventilator and in a hospital if he could help it. Although I respected his decision, it was difficult to watch him struggle.

The most important decision an individual can make may be how much treatment they want at the end of life. Does one want CPR, a feeding tube, breathing machines? When health care proxy laws came into effect in the 1990s, nurses were often tasked with explaining to patients, upon admission to the hospital or at a physician's office, their right to choose someone who would speak for them and follow their wishes if and when they could not speak for themselves. Lifesaving decisions are often made in times of crisis. When the pandemic hit New York City, if you needed to go to the hospital, no family member could accompany you. You were cared for by the hospital staff; many recovered, but many died alone. You had to have your papers in order.

In retrospect, I applaud my patient's decision. It was not easy for me because I had grown to love him as a person. As a professional, I was bound to respect his ability to decide how he wanted his final days to be. He struggled with fevers and shortness of breath for over a week. Fortunately, he had oxygen in his home to relieve his shortness of breath, and in the end, he pulled through. He currently requires no more assistance with activities of daily living and appears to be getting stronger every day. I am confident that when the day comes, David will know that he had a say in how his last days will be spent. As for now, we are planning his 90th birthday.

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