The lesson the book leaves the oncology community with is one that has already taken root, but still needs to be reinforced: Quality care begins and ends with meaningful doctor-patient discussions.
The illness memoir’s appeal proves enduring in a very crowded genre, perhaps because illness is a tie that binds us all. As Susan Sontag wrote in her classic work, Illness as a Metaphor, “Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Will Schwalbe’s new book, The End of Your Life Book Club, opens in the kingdom of the sick—the outpatient waiting room of Memorial Sloan-Kettering Cancer Center.
The Drama Unfolds
The author is at Memorial Sloan-Kettering to support his mother, Mary Anne—she is being treated for pancreatic cancer. Both devoted bibliophiles, they share cups of mocha and begin an ad hoc book club that will serve as the emotional braid as the drama unfolds. To Mr. Schwalbe’s credit, he draws his mother’s zest for life and save-the-world passions in a way that deftly captures the arc of her disease as she bravely struggles against her fading horizons. She’s a big presence in her son’s life, making her decline all the more painful.
For years, Mary Anne worked tirelessly for myriad international humanitarian organizations that kept her traveling to war-torn regions of the world—Afghanistan, Liberia, Sudan, Laos, and Gaza, to name a few. After one particularly exhausting trip she presented with an illness that was first diagnosed as hepatitis. However, Mary Anne progressively got sicker and, at the urging of her family, went to another doctor. Mr. Schwalbe, a book editor and journalist, was in Germany at the annual Frankfurt Book Fair when his mother called and relayed the news that her malady was not hepatitis; she had pancreatic cancer. Stalwart as ever, she urged her son not to cut his trip short.
“I can’t remember much of what I said, or what she replied,” the author writes, underscoring the mind-numbing reaction to a cancer diagnosis. From this point on, Mr. Schwalbe’s rendition of his mother’s battle with cancer becomes a son’s heartfelt tale of a death foretold and how he used the power of the printed word to assuage and at times make sense of the existential realities of terminal illness.
Short on Clinical Realities
The intimate and often difficult bonding process between cancer patient and caregiver is a familiar story, but Mr. Schwalbe weaves it in a way that let’s the reader become a voyeur to his relationship with his mother, which blossoms in the face of death. Although the author focuses on his mother—“the person, not the disease,” which has become a mantra in today’s oncology culture—his story might have had more pathos had he brought the reader a little deeper into the clinical realities of pancreatic cancer.
Moreover, her doctors could have been fleshed out a bit more—for one, her medical oncologist at Memorial Sloan-Kettering, Eileen M. O’Reilly, MD, who “thankfully was all over this. She understood, in a way that many doctors don’t, that a dreadful mouth sore or needing to go to the bathroom five or ten times in a morning needs treatment just as the cancer itself does.” Another Sloan-Kettering doctor, Kathleen Foley, MD, comes into the palliative care picture. But perhaps for readers of The ASCO Post, the role of the oncologist, the therapeutic details, and the decision-making discussions are given too little attention.
Some of the most compelling parts of the book are when Mr. Schwalbe relates the end-of-life discussions that his mother initiated, truly understanding that ignoring the inevitable shortchanges the patient and her family of precious time to properly prepare for the final transition. “Plenty of people are willing to talk about death but very few about dying,” he writes. Noting that some people continued to ignore the way his mother talked about her cancer, he points out that she “occasionally expressed frustration. People weren’t listening. She wasn’t going to get better.”
In the end, Mr. Schwalbe’s mother passed with grace and dignity, despite the cruel ravages of pancreatic cancer. She was fortunate to have a skilled palliative care team and a loving and supportive family. This was textbook end-of-life care, and a large part was due to what the author describes as his parents’ introduction to the hospice movement and the concept of palliative care many years before her own diagnosis. “Perhaps this helped explain why Mom was so comfortable discussing all aspects of her death and what needed to be done.”
In the epilogue, Mr. Schwalbe comments that the mother-son book club “help[ed] Mom on her journey toward death and me on mine to life without her.” The lesson the book leaves the oncology community with is one that has already taken root, but still needs to be reinforced: Quality care begins and ends with meaningful doctor-patient discussions. The book runs a bit long and chatty at times, but its overall humanity and important messages about palliative care and hospice make it a worthwhile read. ■