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At the End of Life, Knowing What's Vital

Brown, Theresa PhD, RN

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AJN The American Journal of Nursing: November 2015 - Volume 115 - Issue 11 - p 57
doi: 10.1097/01.NAJ.0000473318.55690.d9
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Theresa Brown

Scott Simon, the NPR journalist and commentator, made news in the world of social media when he tweeted the details of his charming, theatrical mother's final days, which were spent in a Chicago ICU. His latest book, Unforgettable: A Son, a Mother, and the Lessons of a Lifetime (Flatiron Books, 2015), expands on those tweets, and it's a pleasure to get the full story, especially since Simon is a big fan of nurses. His mother, Patricia Lyons Simon Newman Gelbin, was a gem of a human being, and her larger presence in the book makes their story, well, unforgettable.

But I confess that, about halfway through, I got a little impatient with Simon's reminiscing about the hardscrabble yet magical life they'd made together. I liked learning that they sang Broadway show tunes and rehashed old jokes in her room in the ICU. But as a nurse, I wanted to know more about her illness—she had lung cancer—and care.

Pondering my impatience, I realized I was guilty of a kind of medical myopia. I wanted the clinical details, the specifics of this particular failing body; but that information wasn't what mattered to Simon and his vibrant mother. They understood that she was dying, and they wanted to make the most of the time she had left. That meant enjoying each other's company, not focusing on how cancer and subsequent radiotherapy had irreversibly compromised her respiratory status, which Simon describes in unsentimental terms: “My mother could feel that her lungs were beginning to wear out, like a set of bald tires.”

Their determination to savor their remaining time together deepened as they recalled earlier experiences with death. They explored the pain that had been caused by Gelbin's mother's suicide, and by Gelbin's own attempted suicide when she became desperately depressed over a love affair. It's poignant to find such stories in a book about the unwelcome, but not unexpected, death of a much-loved woman. Any death is final; but when there's time to say goodbye, Simon suggests, the leave-taking is more likely to be characterized by reconciliation and love.

What, then, can we clinicians do to foster as “good” a death as possible for both the patient and her or his family members? Simon says that active listening by all health care workers, and especially by physicians, is paramount. When the physicians caring for Gelbin were trying to help Simon understand just how sick she was, they spoke almost in riddles. They “wanted to know what kind of care she wanted” without explaining the choices, and referred passively to “tests [we] can continue to do.” In her own notes, Gelbin wrote that they “babbled technicals, went too quickly.” Simon makes it clear that he and his mother knew the score. What they really needed was for someone behind that impenetrable wall of medicalese to pay attention. As Simon writes, “I do not believe that other doctors or hospitals could have prolonged my mother's life for even another day…. But they might have spared her a lot of anxieties just by listening.”

That empathy gap only deepened as Simon's mother grew sicker, and for him it was the nurses who filled it: “There was a difference between the care my mother got, hour to hour, from nurses and technicians, who were invariably considerate, gentle, and selfless, and that of most of her doctors, who were… invisible.” That's a strong argument for the importance of nursing care at the end of life. When curative treatment stops—when its futility is acknowledged—clinicians’ interest in and compassion for the patient must intensify. These elements are already fundamental to nursing; but all clinicians might practice them with greater awareness in caring for people near the end of life.

While Simon acknowledges that “dying is a solo act,” in Unforgettable he also offers distilled guidance on what's needed from the supporting cast. After all, each of us wants the best final act possible, for those we love and for ourselves. How? Have a son or a daughter who loves you and will hold your hand; have friends and family members who pop in and out to share stories and songs; have nurses and other caregivers who bring their compassion to bear. The book's subtitle promises “lessons of a lifetime.” As a nurse, I'd revise that: for dying patients, this book offers lessons on getting the most life out of the short time they have left.

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