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What Dying People Want: Practical Wisdom for the End of Life
By David Kuhl, M.D.
Public Affairs, 317 pages, $25.00

After my mother's memorial service in November, one family friend reminded me of a dear acquaintance we shared from more than 20 years ago. "Linda," she said, "told me how very helpful you were when you visited her in the hospital. Of all the visits she had, yours was the most meaningful."

The long-faded incident came back to me. I was an associate pastor in a multiple staff ministry. Linda, the senior pastor's wife, had cancer, and we were all frightened for her.

When I saw her in the hospital, I was overcome by her fragile situation. Few words passed between us. I sat at her bedside and tried to just give her my time and my attention. I went away discouraged that I hadn't been able to bring her some apt word or insight. As it turned out, silent companionship was just what she needed.

Linda turned out to be survivor, and decades later, the grace of that shared silence lives in her memory—and mine.

What do dying people want? What do they need? Insofar as social research can answer that question, Dr. David Kuhl can enlighten us. With funding from the Soros Faculty Scholar Program, he conducted a ten-year study of dying persons in British Columbia. As a palliative care physician (a doctor who specializes in managing pain and other symptoms of the terminally ill), Kuhl was in a special position to carry out the research. His book, What Dying People Want is subtitled Practical Wisdom for the End of Life. Although the book is formally addressed to people whose physicians have told them they are dying, it is easy for pastors, health-care workers, and family and friends to feel it is written for them as well.

Ten years ago, near the beginning of his research, Kuhl had an aha moment as he sat by a patient's bedside. Alice had cancer, and she was in a lot of persistent pain. The medications Dr. Kuhl had been giving Alice should have alleviated her aches and discomfort, but she kept complaining about chest pain. Kuhl floated an observation: "I wonder whether … the pain in your chest isn't … coming from your cancer."

"Yes," Alice said, "the pain is in my heart." And she told him about her sorrow and worry about her daughter's ill-considered marriage. That conversation revolutionized Kuhl's understanding of what dying people need.

In the book's introduction Kuhl writes about the regrets he and his wife have about all the unfinished emotional and relational business that remained after his father-in-law died. He then summarizes what he has learned since that death: "The most important thing I know now that I didn't know then is this: People who are dying are still living."

This is his "primary message." When we feel helpless in the face of death, we surrender to the inevitable and begin to think of the dying as already dead. But this is far from the case: dying people who are still living, and who have their symptoms ameliorated by good medical care and their channels of communication are open, can have final months that are emotionally rich and honest in a way that the rest of their lives has not been. Dying can sharpen our focus and free us from our addiction to triviality. With guidance and analgesia, the time can be strangely rewarding.

Kuhl has not written a how to book in the usual sense: guidebooks packed with numbered steps, their mnemonic slogans, and their confident promises. Instead of slinging slogans, Kuhl tells stories. In the place of most self-help authors' hyperconfidence, Kuhl displays humility. Nevertheless, the book is very practical, precisely because we live best by paradigmatic narratives, by stories that show us the patterns for good living and good dying.

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December (Web-only) 2002, Vol. 46