In the case of those people who did not have the benefit of discussing their options, the stories of their end-of-life care exhibit the neglect that deeply permeates the U.S. health care system. They offer a glimpse into the hidden hospital world that defines how many Americans die.
—Angelo E. Volandes, MD
Title: The Conversation: A Revolutionary Plan for End-of-life Care
Author: Angelo E. Volandes, MD
Publication date: January 13, 2015
Price: $26.00; hardcover, 240 pages
A quick Google search on books about end-of-life care will yield pages of hits on the subject. The current leader of the pack on the issues surrounding life in the context of impending death is the acclaimed book Being Mortal by Atul Gawande, MD (see The ASCO Post, December 1, 2014). The shelves are full of books on the experience of dying and how we, as mortal creatures, make sense of our own terminal destiny.
So, how do authors who feel they have something to add to the subject elbow their way into that crowded space? Write something that moves the needle, even slightly. Write with power and conviction, but never sound preachy. Incorporate compelling anecdotal evidence and patient narratives. Give it a catchy title and a good cover, and there you go.
Of course, this is easier said than done. But a new book, The Conversation: A Revolutionary Plan for End-of-Life Care, does just that. The author, Angelo E. Volandes, MD, is a physician and researcher at Harvard Medical School and cofounder of Advanced Care Planning and Decisions. He is also an accomplished writer who takes Strunk & White’s credo—“Omit needless words”—to heart. Minus endnotes, The Conversation is a mere 240 pages, but it leaves the reader satisfied, not wanting more.
A Not-So-Simple Issue
The Conversation explores the lives of seven seriously ill patients who experienced very different deaths, each hinging on whether or not a doctor had a discussion with the patient before he or she could no longer make a decision. “In the case of those people who did not have the benefit of discussing their options, the stories of their end-of-life care exhibit the neglect that deeply permeates the U.S. health care system. They offer a glimpse into the hidden hospital world that defines how many Americans die.”
In contrast, by exploring the lives of those patients whose deaths were improved by discussing their preferences ahead of time, Dr. Volandes offers the reader a template; a way to make sure that the care delivered at the end of life is consistent with his or her wishes. It sounds simple, so why is this still an unresolved issue in the oncology community? The short answer is, it isn’t simple because it is so uncomfortable talking to people about their own mortality.
Dr. Volandes points out that in order for these tough, much-needed conversations to take place, medical schools need to bolster their end-of-life care curriculum, a message shared by many in the oncology community.
Dr. Volandes writes, “Talking to patients is given short shrift in medical training. The focus of medical education is on technology and treatments; medicine is about doing, not talking.” The good news is that much has changed since Dr. Volandes was in medical school, and leaders in the oncology community have been at the forefront of that much-needed call for awareness. For example, “At Mount Sinai, all medical students are required to spend a week on rotation with the school’s nationally recognized palliative care team, which is led by Dr. Diane Meier, arguably the country’s leader in the field.”
Readers may be especially drawn to Prof. Helen Thompson, one of the seven patients highlighted in The Conversation. We meet Prof. Thompson in Chapter 4, “Where for We Go From Here,” as she is about to embark on a semester-long journey exploring American poetry. A renowned scholar, she never read from notes, and she performed with an aplomb that most senior professors rarely achieve. As she began reciting Walt Whitman’s most famous poem, Leaves of Grass—her 31st such recital—she suddenly went silent, staring ahead numbly at her anxious students.
Dr. Volandes met Prof. Thompson 9 months later. “When I admitted her to the hospital, Helen was fifty-six years old and had been diagnosed with aggressive glioblastoma multiforme; a six-centimeter tumor was crushing her brain.”
Dr. Volandes prescribed dexamethasone to decrease the swelling and inflammation. Then it was time to talk to Helen and her husband who were in the exam room clutching each other’s hands. By now, the tumor had overtaken much of her brain. Dr. Volandes asked how she was feeling, and she responded that she’d had quite an eventful day, adding, “When can I get back to my students?” Dr. Volandes was taken aback. He asked if she’d discussed the full impact of her brain cancer with her oncologist. She replied, “No, we were focused on fighting the tumor.”
This is an important and heart-wrenching chapter, and the author handles it with the care it deserves. Prof. Thompson had inoperable glioblastoma multiforme, and after being hospitalized for a seizure, she’d still not had the tough conversation with her oncologist. She was living in that limbo of false hope that too many patients like her inhabit. At that point, Dr. Volandes very delicately interceded, guiding her along with compassion and honest conversation. And she thanked him for that as she left the hospital and entered hospice care.
Each of the six other patient episodes illustrates, without redundancy, a lesson in how and when to initiate thoughtful conversations about clinical realities and how to plan for the next step, whatever that might be. Dr. Volandes has developed a set of teaching videos called The Conversation that help practitioners learn how best to manage their patients facing a terminal illness. A tireless promoter of his approach to end-of-life care, giving lecture after lecture from coast to coast, he is a man on a mission, and readers of The ASCO Post with connections to the palliative care community will cheer him on.
The afterword and the appendices, usually skipped or glanced over by readers, contain some of the strongest material in the book. Here, Dr. Volandes supports his arguments for The Conversation with empirical data and convincing anecdotal evidence.
One study he cites followed terminally ill patients for a year, and it showed that one-fifth of those patients who stated in a questionnaire that they did not want burdensome medical interventions received such nonetheless, which Dr. Volandes considers an egregious medical error. “These medical errors are entirely preventable if doctors, nurses, and social workers have done their due diligence and engaged patients in these vital conversations,” writes Dr. Volandes.
The appendices give easy-to-read examples of how to initiate “the conversation” in a multitude of clinical scenarios. Here the reader will also find valuable information about health-care proxies and advance directives, plus a guide to online resources. This is value-added content that every provider who deals with very sick patients should review and pass along to colleagues.
The Conversation is a highly recommended book for readers of The ASCO Post. Dr. Volandes has moved the needle in this genre—not an easy task. He admits there were times in his early career when he didn’t stop in the clinic to have the conversation. “I had started a cascading series of medical procedures without ever asking the patient what he or she wanted…. [M]y hope is that all people get the opportunity to live the way they wish, throughout all the chapters of their lives.” ■