“Reading is an exercise in empathy; an exercise in walking in someone else’s shoes for a while.”
As physical therapists, we spend countless hours mastering anatomy, physiology, and examination and treatment techniques—but how much time do we dedicate to learning about the lived experiences of our patients? Many clinicians choose the field of PT because it offers more patient-provider interaction time than other healthcare disciplines and requires strong interpersonal communication skills. A growing body of research points to patient-therapist interaction as a crucial component of outcomes. Fundamental qualities of successful interactions include agreement on goals and interventions as well as the affective bond between therapist and patient. Our interpersonal skills are honed by experience, but we can greatly strengthen those skills by growing our understanding of the lives and journeys of those we serve. While we may not always have the opportunity to increase the diversity of patients we work with in real life, there are other ways to supplement our day-to-day clinical experiences. The following books are a great place to start!
1. When Breath Becomes Air
By Paul Kalanithi
Ratings: 4.36 Goodreads/4.8 Amazon
Paul Kalanithi’s wrenching memoir is one of those that sticks with you long after you’ve finished—and one you are eager to share with friends, family, and colleagues. When Kalanithi, a neurosurgeon in his mid-thirties, is diagnosed with stage IV lung cancer, his once typical hopes, dreams, and aspirations for the future are called into question. As he steps into the uncharted territory of facing his own mortality, he finds little to no carryover in the skills he developed as a doctor, despite being wholly familiar with navigating death in a professional capacity.
As Kalanithi switches hats from practitioner to patient, we discover the deep knowledge one can gain only from experiencing such incredible uncertainty. He takes readers along his introspective journey, intimately describing the process of living with a terminal-illness—the dramatic shifting of priorities, hopes, and fears. His examined life and untimely death are a gift to those of us who still have living left to do.
2. Run, Don’t Walk: The Curious and Courageous Life Inside Walter Reed Army Medical Center
By Adele Levine, PT
Ratings: 4.10 Goodreads/4.7 Amazon
In her humorous and moving memoir, physical therapist Adele Levine chronicles her days working at Walter Reed Army Medical Center on the amputee rehabilitation team. Through her triumphs and challenges, Levine lays bare her lack of career direction and self-confidence, as well as her bouts with compassion fatigue. The endless cast of characters and stream of gravely injured soldiers present no shortage of adversity. The love of her patients and the humor and the camaraderie of her fellow therapists ultimately keep her grounded and hooked into the world of Walter Reed.
Levine opens a window into a world few experience first-hand. By way of her artful descriptions, physical therapists will have no problem imagining themselves in the “fishbowl” therapy gym of Walter Reed, coaxing hesitant, freshly injured amputees to push their bodies in ways they never would have dreamed possible. Run, Don’t Walk is a powerful read for clinicians in any stage of their career.
3. Being Mortal: Medicine and What Matters in the End
By Atul Gawande, MD
Ratings: 4.44 Goodreads/4.8 Amazon
“If time becomes short, what is most important to you?” Although this question seems important enough to pose to each and every dying patient, all too often, it is tragically overlooked. Conversations around death and dying are difficult for patients and clinicians alike, but their absence can cost patients tremendous losses of quality of life in their final days and weeks. Physician Atul Gawande shows us where modern medicine has gone wrong in its quest to extend life at all costs—and guides us into a better philosophy of care.
Through stories of his patients and his own personal journey navigating his father’s terminal illness, Gawande compels us all to examine the status quo of our medical system. He then challenges us to imagine a future that moves beyond maximizing our days on earth, to maximizing our days well-lived. In addition to heartfelt and gripping patient stories, Being Mortal is packed with research highlighting the benefits of hospice and palliative care, which unfortunately remain a mystery to many who would benefit most from such services.
4. Dementia Beyond Disease: Enhancing Well-Being
By G. Allen Power, MD
Ratings: 4.35 Goodreads/4.7 Amazon
In this follow-up to his debut book Dementia Beyond Drugs, Dr. Al Power packs his pages with stories from his encounters as a geriatrician with individuals living with dementia. His storytelling leads us to unpack important truths about our societal and medical views on dementia—and why so many of our well-intentioned interventions fall short of providing quality care for this population. In the powerful words of Dr. Power, “In short, we need to change our minds about people whose minds have changed.”
Dementia Beyond Disease lays out a framework—which covers the domains of identity, connectedness, security, autonomy, meaning, growth, and joy—for maximizing the well-being of those living with dementia. Clinicians reading this book will discover how starting from a framework of well-being vastly improves the lives of their patients by enhancing communication, reducing episodes of distress, and allowing the abilities and values of individual patients to guide clinical interventions.
5. Disability Visibility: First-Person Stories from the Twenty-First Century
Edited by Alice Wong
Ratings: 4.54 Goodreads/4.9 Amazon
In a quest to amplify marginalized voices of the more than one in five Americans living with a disability, activist Alice Wong presents us with a collection of stories that “do not seek to explain the meaning of disability,” but instead, “show disabled people simply being” through powerful first-hand accounts.
Disability Visibility offers a unique look into the diverse perspectives and experiences of more than 30 disabled writers, who tackle subjects like internalized ableism, discrimination, the social model of disability, and more. Some of the essays address patient-provider interactions, which may offer valuable insight to physical therapists whose patients may have both visible and invisible disabilities. This collection beautifully highlights the solidarity of the disability community and challenges all readers to reexamine biases and long-held beliefs. Most importantly, it showcases the beauty and rich depths of a community too-often overlooked.
6. Where is the Mango Princess? A Journey Back from Brain Injury
By Cathy Crimmins
Ratings: 4.11 Goodreads/4.6 Amazon
Far from home, and on the last day of his family’s lake vacation, Alan Foreman is struck in the head during a horrific boating accident that will forever upend his life and the lives of those he loves. Author Cathy Crimmins, Alan’s wife, recounts the moments after the accident, sharing firsthand details typically reserved for those personally familiar with the event. Crimmins leads readers through a fascinating account of traumatic brain injury (TBI) and illustrates the twists and turns of the rollercoaster many families ride in the wake of TBI.
Crimmins also pulls no punches describing the shortcomings of managed care health systems. Alan’s wife, physicians, and social workers battled constantly with insurers to cover his services and treatments.
PTs may appreciate the way each chapter is prefaced by a level of the Rancho Los Amigos Hospital Scale of Cognitive Functioning. Readers follow Alan’s journey of recovery through these linear levels that are anything but smooth. Crimmins lines her pages with memorable, touching, and at times, witty and irreverent commentary, giving an up-close look at her journey from spouse to caregiver. Clinicians will gain valuable insight and understanding of the long road to TBI recovery—and its impact on the patient’s family.
7. The Unwinding of the Miracle: A Memoir of Life, Death, and Everything that Comes After
By Julie Yip-Williams
Ratings: 4.10 Goodreads/4.4 Amazon
In her poignant memoir, Julie Yip-Williams chronicles her five-year journey with metastatic colon cancer, from diagnosis to death. Throughout her story, we see how her remarkable childhood shaped the way she faced her terminal illness. She recounts how being born blind in Vietnam almost cost her life and tells of her harrowing journey to America.
At 37, a Harvard-educated lawyer and mother of two, Yip-Williams discovered that months of stomach discomfort were due to a cancerous mass in her colon. The years that followed would be filled with scans and treatments, immeasurable sadness and joy, and a world viewed through the main lens of cancer. In one particularly touching moment, she describes being awestruck by the gentleness and the absence of disgust and judgement with which a hospital aide cleans her up after a humiliating accident. It’s a stark reminder of the little actions we, as healthcare providers, perform every day that leave lasting impacts on our patients.
Yip-Williams passes her wisdom to her readers, providing insight that can only be gained by facing your own mortality. In her words, “dying has taught me a great deal about living…about embracing the suffering as well as the joy. Wrapping my arms around the hard parts was perhaps the great liberating experience of my life.”
8. The Spirit Catches You and You Fall Down: A Hmong Child, Her American Doctors, and the Collision of Two Cultures
By Anne Fadiman
Ratings: 4.17 Goodreads / 4.6 Amazon
The first two times Foua and Nao Kao brought their infant daughter, Lia, to the emergency department at Merced Community Medical Center, she had already stopped seizing. Without interpreters, Lia’s parents were unable to relay a full history, and physicians were left unwittingly unable to address her true illness. In future trips to the hospital, Lia was still seizing. Physicians were then able to see Lia’s illness clearly, but their attempts to manage her condition were fraught by deep-seated differences between the Hmong culture and western medicine.
The Spirit Catches You and You Fall Down follows Lia over several years, during which a series of unfortunate events and grave misunderstandings between her parents and physicians leads to a deep mistrust—and ultimately, a failure to serve the best interest of the patient. Although the main story follows Lia, this book is really a broader look at culture clash in medicine, the pitfalls of ethnocentrism, and the tragic costs of miscommunication.
Fadiman examines clinicians’ varying responses to facing these cultural differences, which spanned from one doctor becoming a less rigid person, to another’s idealistic worldview ceasing to exist. She explores the implications of using phrases like “patient noncompliance,” which can imply a dominance of one group over another. Clinician readers may find themselves grappling with their own fundamental worldviews and discovering how deep-rooted biases most certainly shape the care rendered to patients from culturally diverse backgrounds.
Ultimately, Fadiman makes a strong case for cross-cultural medicine training and encourages readers to engage in self-examination through profound lines like, “We do not see the world as it is. We see it as we are.”
Hopefully, these books will give you new insight, perspective, or empathy for the patients or families you may encounter in your clinic, hospital, home therapy setting, or even just out and about in the world. Happy reading!