Essential Reads on End-of-Life Care and Compassion

I was a marketing associate in my mid-20s when I was tasked with putting together press kits for Cheryl Kuba’s Navigating the Journey of Aging ParentsThough young, I was already familiar with the lessons in Kuba’s book on end-of-life care and compassion fatigue, and could appreciate the importance of a book for caregivers. At the time, my mother had been caring for my aging grandfather for years.

I can still remember those difficult years during which he isolated himself in his home, hiding liquor bottles around his house, in the backs of filing cabinets in the garage, in the backs of pantry cabinets and closets. Over time, he became argumentative and verbally abusive toward my mother, his voice slurring as he shouted at her over the phone. Eventually, when caring for him on her own became too difficult, she moved him into a nursing home, which was awful in its own way. I remember feeling angry and resentful toward him in the years when he was still at home, especially on behalf of my mother. I struggled to remember him as the man he’d been, not understanding that he was likely mourning that loss as well. Later, when he was living in the nursing home, I felt a troubling mix of sadness and pity and love.

Ten years later, I experienced the death of my uncle, a reclusive man who had hidden his sickness from my family. When I visited him in the intensive care unit of the hospital where he had been admitted after finally calling my father for help, I barely recognized him. Later, at home, saving my tears for the shower so no one else could see them, I wished he would somehow recover, and that we would be given a second chance to live a life that had him at its center. Instead, he died the next day.

I thought of him again this past week—thought of him laying back in his hospital bed, a respirator over his mouth and nose, his body thin in its hospital gown—as I read Katy Butler’s beautiful and thoughtful Knocking on Heaven’s Door: The Path to a Better Way of Death. A reported memoir that shines a spotlight on the difficulties of caregiving, the commerce behind modern medicine, and the meaning of a good death, it made it clear to me that the end of life is almost always imperfect.

Since Butler published her book in 2013, it seems that more and more journalists—and even medical professionals—are feeling called to explore this topic. Literary magazine Intimaa journal of narrative medicine that launched in 2010, has grown in its visibility. In 2014, The Sun focused much of its April 2014 issue on matters of death. Also in 2014, surgeon and author Atul Gawande published Being Mortala truly fascinating read on the impact modern medicine has on the end of life. And in 2016, I snatched up a copy of neurosurgeon Paul Kalanithi’s When Breath Becomes Air, a memoir in which the author—diagnosed with stage IV lung cancer—tries to answer the question: What makes a life worth living?

Victoria Sweet’s God’s Hotel (about a hospital that practices slow medicine) and Ann Neumann’s The Good Death (written by a journalist and hospice volunteer) still wait on my nightstand.

I am regularly called upon to scrutinize the deficiencies of the medical field as part of my work. I write about the pathologization of female sexuality. About gender-biased diagnosing. About public health initiatives whose aim is to increase access to care.

I remain fascinated by works of narrative nonfiction that look to aspects of medical care I have yet to face, that pull apart the particulars of progress, and that question what it means to live and to die well.

It is work like this that forces us to start the conversations we’d rather never have. Would having access to these books have made my grandfather’s final years easier? The slow stretch of those years more gratifying? Would we have felt less blindsided by my uncle’s death? Would those three days at his bedside have felt like enough?

Again, I come back to the knowledge that the end of life is almost always imperfect and difficult and heartbreaking.

But books like these can help us approach it with eyes wide open.

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