January 18, 2015

Tell Me A Story

Come then, and let us pass a leisure hour in storytelling, and our story shall be the education of our heroes. (Plato)

The story—from Rumpelstiltskin to War and Peace—is one of the basic tools invented by the human mind for the purpose of understanding. There have been great societies that did not use the wheel, but there have been no societies that did not tell stories. (Ursula Leguin)

In his new book, The Conversation, my friend and colleague, Angelo Volandes, makes the case for using videos to help patients and their families understand what lies in store for them as they approach life's end. He quotes one of his patients—a working class Irish-American with advanced brain cancer: “if a picture is worth a thousand words, a video is worth hundreds of thousands.” And Angelo’s videos can be very helpful: they are designed to be clear, short and accurate, to show real patients with real diseases undergoing actual treatment for their illness. But the irony is that the power of this book, and it is powerful, is all in the words.

Joining the ranks of other prominent writer-physicians such as Abraham Verghese, Oliver Sacks, Jerome Groopman and Atul Gawande, Volandes tells stories. His most engaging are those that are the most intensely personal: the wife of a professor he worked for as an undergraduate who terrified her husband—and the young student preparing meals for them—as she coughed up blood and struggled to breathe; and his own father, who decided after a series of debilitating cardiac events that he would not want to undergo attempted CPR. The stories illustrate with great poignancy the different ways that patients experience the final stage of their lives. His message is that it’s important to write your own story: whether you have a good ending or a bad one depends not so much on the path you follow as on whether you chose that path. As he puts it, “there are no right and wrong decisions about medical care at the end of life; rather, the value lies in making a fully informed choice.”

Really? Are all choices equally good? In The Conversation, we learn about 10 patients, among whom 6 make explicit decisions about what kind of medical treatment they want, and 4 are unable to make decisions so the care they receive is what their families or their doctors recommend. Most of the patients in the book who make their own choices, either after watching Angelo’s videos or after going on a guided tour of the ICU or dialysis unit to see what lies ahead (nobody in this book thought about their preferences any time before the end was imminent), choose to focus on comfort; only 2 persist in their wish that the doctors “do everything.” And the 4 patients who did not participate in the decision-making themselves, all of whom underwent aggressive, sometimes “brutal” treatment in their last weeks or months of life, are presumed to have gotten treatment that they couldn’t possibly have wanted, had they only been engaged in the process of deciding.

Consider the Italian matriarch who had a feeding tube and repeated courses of treatment for pneumonia after developing advanced dementia. She suffered mightily in her “last miserable weeks” of life, as did her family. Or take the elderly Ukrainian-American with lung cancer who underwent repeated attempts at CPR and assorted invasive procedures even though he had “one foot in the grave.” Young Angelo, the physician at the center of these resuscitative efforts, describes the treatments as putting “terminal cancer patients through torture.” The presumption is that if only these patients had known the truth about what modern high tech medicine does to dying patients, and if only they had then been asked what they wanted, they would have opted for comfort care.

So it’s not just that most patients don’t want treatment that has virtually no chance of doing anything for them other than causing extreme discomfort; it’s that no patients want this. The reason that any of Angelo’s patients opted for maximal medical treatment is that even though they understood what the treatment entailed, they didn’t fully  accept their own situation: they did not believe that they were dying. The husband of a young woman dying of metastatic breast cancer comments that “you never know what new chemo is on the way,” even though his wife has hours to live and no drug is going to descend from the lab deus ex machina to save her. The 79-year old African American with end-stage kidney disease says he’s “been through harsher things than this” and “God has given me a second chance before.”

Physicians cannot force patients to accept our diagnoses and prognoses, assessments made based on scientific training and clinical judgment. We cannot require them to accept our recommendations for treatment. Nor, in contemporary society, can we withhold what we believe to be futile treatment as long as we are not 100% certain that it cannot possibly prolong life, even by a few hours. But we can do a better job informing patients and families of the reality as we see it so that they can choose wisely. Videos can help, but above all, so can stories, stories that acknowledge our mortality and capture the realities of advanced illness.The real power and the beauty of The Conversation stem not from its exhortation to have a conversation about preferences for end of life care, and not from its discussion of videos that can jump start the conversation, but rather from the stories themselves.

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