Re-Visioning the Best Care Possible

Abstract

Ira Byock's first single-authored book, Dying Well, was something of a sensation in the U.S. after its release in 1997. Although written for a lay audience, it slowly became a best seller in hospice circles. The brilliance of Dying Well was that it sought to get readers talking about the experience of dying and its meanings by telling well-honed stories embedded in an autobiographical narrative that gave the stories a collective meaning. The medium matched the message. Although the medium remains the same in The Best Care Possible, it is poorly matched to the message. The Best Care Possible, Byock's third book written for this audience, lays out a deceptively complex two-part mission. The first part is captured nicely in his aphorism “Dying is hard, but it does not have to be this hard” (p. 3). Here, Byock shares his insight, suggesting that the current U.S. health care system is a terrible place to die—delivering an experience hallmarked by uncoordinated, unwanted, highly invasive care and poor symptom management, which can make dying worse than it would have been if one had not entered the system as a patient in the first place. In the second part of the book, the author promises to tell the reader “how things could be better—much better—for ourselves, the people we love, and, eventually, for our national community and culture. Most immediately, The Best Care Possible is about how to make the best of what is often the very worst times of life” (p. 2). It would be reasonable to expect from the introduction that the book will explain 1) how and why the U.S. system has failed patients who are dying and 2) how it can be changed so that it no longer does so. And, although reasonable, readers emerging from the introduction with such an expectation will find the remainder of the book disappointing. Those familiar with Byock's previous popular writing will know of his gift for storytelling. Narrative is an especially effective way to communicate with nonspecialists, as the context embedded in stories allows the author to open up space for both facts and their possible meanings. That gift is evident in this new volume, as well. Indeed, we are inundated with stories—some 180 pages worth—and they are frequently moving and notable for their descriptive detail. Byock's narratives illustrate how final illnesses are often family affairs. The reader meets not only patients but also their spouses, children, parents, and colleagues. As the stories unfold, the complexity of human suffering jumps off the page. One is struck by the fact that what cries out for palliation far exceeds physical symptoms. It includes the grief, worry, guilt, exasperation, anger, hope, and fear embedded in powerful relational webs surrounding patients. Clinicians and laypersons alike will benefit from the reminder that suffering crops up in unusual places from unforeseen origins and, at times, can be more intense in loved ones than in patients themselves. The stories are moving, yet fail to illustrate the two primary claims of the book: that the current system is seriously broken, and that there are concrete ways to fix it. Stories could be the perfect medium through which to explain the disastrous series of emergency department admissions, diagnostic procedures, and bank-breaking interventions that often characterize care in the last six months of life—care that usually fails to extend the quantity of life while simultaneously causing suffering. It is a missed opportunity that, in the current book, the suffering caused by the health care system itself remains largely untold. Rather, in most of the stories, a bad death is averted by the intervention and compassionate care of a skilled palliative care physician, Dr. Byock himself. How broken could the system be if, in story after story, patients can be spared a bad death by the timely intervention of a single physician? Although not well captured in his narratives, Byock does an exemplary job between the stories of explaining to lay readers the basic findings of health services research, demonstrating how the care received by over half of Americans in their last months of life is both undesirable and unsustainable. In addition to emphasizing how such care is exceedingly costly and delivers few measurable benefits, Byock skillfully and subtly communicates how the physicians providing such care also find the entire enterprise demoralizing and antithetical to the basic goals of medicine. One message that comes through loud and clear to readers: almost no one—whether patient, family member, or clinician—is happy with the current state of affairs. The second task of the book is to give readers a clear vision for a better way forward. On this front too, however, the book falls short of the mark. It is possible that Byock intended to use some features of palliative care—interdisciplinary teams, care plans driven by patient values and goals, basic principles of family-centered care, and a return to community-focused support—as illustrative components of “the best care possible.” If so, it is curious that not until page 200 (in a book of 300 pages) does Byock even mention that there are nonphysician members of his palliative care team. The only nonphysician role he explains—that of nurse practitioner—appears to be valuable in Byock's eyes primarily because nurse practitioners can practice “very much as I and the three other physicians in our group do” (p. 203). Whether Byock and his team practice interdisciplinary palliative care is not clear to this reader, nor will any other reader know that from reading this book. And, that is precisely the point. If he wanted to educate his readers about palliative care and suggest the key components for a best practice model, readers might have expected more information about the value of care given by an interdisciplinary team populated by nurses, social workers, spiritual care providers, and other nonphysicians working in concert. The one exception to this is the role of the volunteer, about whom Byock writes compellingly and illustratively. The book does contain short passages alerting readers to alternative models of care–PACE, NORCs, and the Eden Alternative, for example–that overcome the pitfalls of the dominant hospital-based U.S. health care system. Byock's brief description of each model emphasizes how it is able to offer highly individualized, supportive, and financially sustainable care to aging Americans before they are acutely and terminally ill. Explaining what has been learned from the successes and limitations of these models would give readers reason to believe that the second of Byock's two premises—that it does not have to be this way—is plausible. Lay readers and community leaders, especially, may be inspired to investigate these models to see how they might be adapted to fit the needs of their local communities. The very last chapter of the book, “Standing on Common High Ground,” begins as a call to action, imploring readers to reject the status quo and demand the best care possible. After an energetic start, the chapter unexplainably digresses into a tangent against aid in dying and ends with an oddly selective history of bioethics. Alas, this reader finished the book still waiting for any particular insight into what kind of action the author recommends, or how it might help move us closer to giving or receiving the best care possible. Readers looking for clarity regarding what constitutes the “best care possible” or a concrete vision for how to change the health care system will likely still be looking when they finish the book. In that way, both the title and the introduction create expectations that are not met and set the scene for a disappointing reading experience. Readers both inside and outside the health care system, however, also will know that the quest for “better” care in the U.S. health care system has been underway for several decades, and that the care Byock strives to provide at the end of life holds promise for improved care across the lifespan. Insofar as it may inspire directed discussion across the country about how to demand and receive better care than is currently offered, and inasmuch as it may remind clinicians and policymakers of the real need to design and deliver such care, Byock's book may serve as an important catalyst for us all. Timothy W. Kirk, PhD, is an Assistant Professor of Philosophy at the City University of New York—York College, New York, New York, USA.