Abstract
As palliative care clinicians, we spend our days seeking to relieve suffering and to understand the meaning our patients attribute to their illness, life, and approaching death. Yet in the chaos of busy hospitals and clinics, it is easy to overlook the beauty that can be found in even the most dire of circumstances. Betsy MacGregor's text serves as a reminder that each of our patients has the potential to change the way we view life, death, and the part we play in each. Her book is a collection of anecdotes about her patients, which she aptly describes in the prologue as “gut-wrenching, heart-opening, soul-uplifting stories that chart the human journey, the epic process of challenge and growth in which every one of us is engaged.”
Though she is a physician first, MacGregor is a gifted and compelling writer. She weaves together dozens of stories of patients and families in a series of chapters that explore the tension between the miracle of life and the mystery of death. She draws upon decades of experience, encompassing her years as a medical student, resident, pediatrician and adolescent medicine specialist, and finally as a researcher in palliative care. Each chapter illustrates a dichotomy we encounter as clinicians: Beauty & Brutality, Tenderness & Technology, Suffering & Compassion, among others. Each narrative fills no more than a few pages, and this approach can feel fragmented at times. Yet MacGregor manages to pull together the stories in each chapter by linking them to a common theme.
Importantly, this is not a collection of narratives with “happily ever after” endings; the author writes that “the practice of medicine is rife with opportunities to learn that life does not always conduct itself in a way one would regard as right or reasonable.” Nonetheless, with steadfast optimism MacGregor gleans pearls of wisdom from even the most dreadful of circumstances. She beautifully illustrates the grace, hope, and strength with which I so often observe my patients facing their own life-limiting illnesses.
Throughout the book, MacGregor illustrates the importance of “address[ing] the human experience of being sick,” rather than simply addressing illness itself. In palliative care, perhaps more than any other medical specialty, the provider-patient relationship is of paramount importance; it is crucial to our success in relieving the suffering of our patients. The text explores the intricacies of these relationships and the ways in which they have changed in the last several years, now reflecting a partnership more than a power struggle. Often, our willingness to listen and to be present with suffering is far more important to our patients than whether or not we were successful in eliminating their pain or eradicating their nausea. Yet as clinicians we know all too well the frustration of feeling that we are unable to help a patient in need, and this sense of defeat does not go unacknowledged by MacGregor.
MacGregor is not afraid to discuss mistakes she has made, making her narrative relatable. She wisely notes that regardless of your experience, in medicine there will always be unknowns. MacGregor embodies the qualities one hopes all health care providers possess: compassion, dedication, honesty, and a genuine desire to alleviate suffering in her patients. All of this is perhaps most evident in the book's epilogue, where the author offers readers an intimate glimpse into her own experience as a cancer patient. She beautifully summarizes the lessons each of the patients introduced in the book taught her, and the ways in which she was able to apply these lessons to her own fight against cancer.
Facing illness and death inevitably effects change, not only in patients but also in their families, caregivers, and health care providers. This book is an important read for those in training, as a reminder to never lose the compassion and sense of wonder that, in part, is responsible for drawing them to the caring professions. It is an important read for those who have been working in health care for some time, as a reminder to acknowledge and seek meaning in the emotional challenges we face each day. It is an important read for patients and families as a reminder that those providing caring for you and your loved ones are human too, and care deeply about you.
Though written by a physician, this book and its message are accessible to readers across the health disciplines and beyond. Above all else, this text challenges clinicians to look beyond diagnoses, prognoses, and treatments, and to recognize that each patient can make us wiser; each encounter is capable of reminding us of the awe of being human.