Abstract
The voices of family members are heard throughout Dying With Comfort: Family Illness Narratives and Early Palliative Care. The authors are three health communication scholars and one geriatrician/palliative care physician who examine the narratives of several families to illustrate family communication patterns and the challenges of addressing end-of-life (EOL) issues. As described in the introduction, they aim to “move beyond the obligatory assessment that America is death-avoidant and better understand the communication that makes this happen” (p. 9). To do so, the authors take an ethnographic approach and examine the narratives of six families. This qualitative method is backed by thoroughly researched and current palliative care data. Their ambitious agenda includes describing the health policy debates and palliative care medical education, but the book is most valuable when it explores the depth and meaning within the stories of the families portrayed.
In order to lay the groundwork for readers to better understand their theoretical analysis, the authors review several communication frameworks in Chapter 3, “Application of Family Communication Theory.” They focus in particular on narrative medicine, performance theory, and family communication patterns as these theories provide the backbone to their analysis in the rest of the book. However, the heart of this book lies in the fourth, fifth, and sixth chapters. In these chapters the authors examine and contrast family experiences of terminal illness without hospice (“The Isolated Journey”), with late hospice referral (“The Rescued Journey”), and with early integration of palliative care (“The Comforted Journey”).
Chapter 4 describes “The Isolated Journey,” detailing family experiences without palliative care, when patients and families focus only on curative care. These stories illustrate the fallout of this approach, including persistent family conflict, worsened quality of life, caregiver burden, and missed opportunities at EOL. Chapter 5, “The Rescued Journey,” chronicles the stories of families who receive referrals to hospice late in their disease trajectory. The authors describe how a late transition to hospice can be difficult. “The abrupt modification in approach to care may seem brutal, abusive, and disempowering for patients and families who are asked to change their way of thinking about survival and care” (p. 145). One son describes the difficulty he felt when his father's goals of care were suddenly changed: “Calls were made for hospice to begin as soon as possible…. I had given my father a death sentence. That was not true, but that is what I felt” (p. 174). Finally, in Chapter 6, “The Comforted Journey,” the authors advocate the benefits of a simultaneous care model (receiving life prolonging treatment and palliative care). They argue that this approach allows the terminal diagnosis to be shared early, resulting in more honest conversations about death and dying and allowing families to more fully embrace EOL care planning.
The final chapter describes “The COMFORT Initiative.” The authors present a set of principles as a means to teach health care professionals about early palliative care communication. It includes
This book does an excellent job of explaining academic terms, introducing a framework for understanding family communication dynamics, and then illustrating them through narratives that the reader follows throughout the chapters. The stories are poignantly familiar, making the academic concepts feel more relevant and applicable. The narratives strongly illustrate the authors' thesis that early palliative care leads to better care, the Comforted Journey. As a result there is less exploration of the ambivalence and nuance inherent to EOL narratives, even those including excellent, early palliative care. Inclusion of stories of patients with life-limiting noncancer diagnoses would have further supported the authors' argument that palliative care be used early and broadly, “as complementary to curative treatment” rather than as a “substitute for standard, conventional care” (p. 212).
This book is intended for those interested in communication, family dynamics, and palliative care; its academic approach will make it appealing to scholars already somewhat familiar with the field. In a society that perceives death as a failure of the medical system, the authors use compelling stories with evidence-based techniques to demonstrate early palliative care as essential to improving an experience we will all encounter. Most importantly, they broaden the spotlight beyond the patient to include the families that surround them through the dying process.