The best books on patient/family experience and advocacy in healthcare

By Devesh Dahale

Who am I?

Life caught me by surprise when our youngest son was born with a birth defect that launched our family into the world of surgeries, and treatments. After experiencing the management of chronic care for our child firsthand, I realized how important it is to share personal stories and experiences. It enables empathy and a deeper understanding and appreciation of what patients and families go through. Autobiographical accounts of patients and families are still very limited. We need more people to come forward and share their own patient/family experiences in order to promote the betterment of healthcare and healing through relating with others and learning from others’ experiences.

I wrote...

The 5000th Baby: A Parent's Perspective and Journey through the First Year of Life

By Devesh Dahale,

Book cover of The 5000th Baby: A Parent's Perspective and Journey through the First Year of Life

What is my book about?

A story of the first year of life of a baby who was born with a rare birth defect which occurs with a frequency of one in approximately 5000 babies born. A vivid description of the journey of a family that was shocked and overwhelmed by the fear of the unknown, and the perils of the surgeries and treatments that would follow. The story is a detailed account of the medical aspects (surgeries, recoveries, complications, infections, and treatment regimens) while often encountering a “not so friendly” medical system at times as well as dealing with psycho-social aspects of life.

The book provides valuable tips and suggestions so that others may benefit from the author’s experience. Learn about the journey with its trials and tribulations as experienced through the patient / parent’s perspective and appreciate the blessing of a normally functioning healthy human body.

The books I picked & why

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My Stroke of Insight: A Brain Scientist's Personal Journey

By Jill Bolte Taylor,

Book cover of My Stroke of Insight: A Brain Scientist's Personal Journey

Why this book?

This is an enlightening memoir recounting the story and journey of experiencing and recovering from a stroke. I love this book because it uniquely combines perspectives of the author being a researcher (neuroscientist), patient (experiencing the stroke), and just a common person with a normal life - which was turned upside down by the stroke. The author walks you through the arduous physical and emotional roller coaster of recovery, a few neurons at a time. The human brain candidly expressing what happened to itself, is a marvelously fascinating concept that you get to learn by reading this book.

Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir

By David Fajgenbaum,

Book cover of Chasing My Cure: A Doctor's Race to Turn Hope Into Action; A Memoir

Why this book?

Imagine being a medical school student in the best of health and full of spirit and ambition, and suddenly being engulfed by a strange and mysterious illness that even the best of doctors in the most renowned hospitals are unable to appropriately diagnose, let alone treat. This chilling story of a doctor who literally chases his own cure is a great example of the much-needed patient advocacy that may often be required to diagnose and treat rare and complex conditions effectively. The author’s passion for finding the underlying cause of his disease (Castleman’s disease) and experimenting with innovative unlikely combinations of drug therapies makes his story memorable and truly inspiring.

Proof of Heaven: A Neurosurgeon's Journey Into the Afterlife

By Eben Alexander,

Book cover of Proof of Heaven: A Neurosurgeon's Journey Into the Afterlife

Why this book?

Every once in a great while, something remarkable happens and lets us learn about life in a different dimension than what we are used to. This book is penned by an author who is a neurosurgeon and who had a near-death experience upon falling critically ill with meningitis. I love this book because of the author’s ability to use his profound knowledge gained by his own near-death experience to unravel the deepest and most insightful meaning of life and its secrets. The lessons learned from the author’s own experience of the fusion of the spiritual and scientific self is well explained. The book is also unique from a point of view of the author being vulnerable enough to reveal his personal life and how his past played a role in the experiences during the 7-day coma and recovery from it.

A Breast Cancer Alphabet

By Madhulika Sikka,

Book cover of A Breast Cancer Alphabet

Why this book?

Breast cancer has become ubiquitously one of the most common and dreaded cancers among women. Through this book, the author authentically and innovatively advocates for patients like her, who are diagnosed with breast cancer. She describes her journey in detail in an attempt to guide and advise others on how to deal with and manage life in the face of such a deadly diagnosis. While patients may be overwhelmed by the medical management aspects of the disease, the author reminds us to keep the human and psychological aspects in mind as a patient is after all a human being with emotions at the core.

Rare and Resilient: ONE in 5000 Anthology

By Greg Ryan,

Book cover of Rare and Resilient: ONE in 5000 Anthology

Why this book?

This book is near and dear to me because of the topic it is based on. Anorectal malformation is a rare congenital defect that affects one in 5000 babies born. The book does a great job of bringing to light the real-life stories and experiences of patients and their families as they learn to navigate the healthcare system while aiming for the best outcome for their babies. The book gives a platform for raising awareness of birth defects such as anorectal malformations and tries to overcome the stigma associated with them. The book is a great compilation of stories of patients with anorectal malformations and serves as a great resource for other patients faced with a similar diagnosis.

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And, 3 books we think you will enjoy!

We think you will like Refuge: An Unnatural History of Family and Place, No Cure for Being Human: (And Other Truths I Need to Hear), and Memoir of a Debulked Woman: Enduring Ovarian Cancer if you like this list.

Refuge

By Terry Tempest Williams,

Recommended by Rick Bass

From Rick's list on The best books to read about resistance.

Finishing out the nonfiction—though I leave thousands undiscussed here—is Terry Tempest Williams’ seminal Refuge: An Unnatural History of Place. Bold and original in its direct comparisons between the personal and the ecological, the memoir chronicles the deterioration of Williams’ beloved mother, Diane Tempest, to ovarian cancer at the same time their shared landscape, the Bear River marshes of the Great Salt Lake where three generations of the Tempest had gloried in birding expeditions, were succumbing to record flooding. The memoir also details the exposure of Williams and her mother—her entire family—to radioactive fallout from the U.S. government’s atomic testing in the 1950s. Passionate, eloquent, fiery, informative, and wise, it’s a must-read.

No Cure for Being Human

By Kate Bowler,

Recommended by Laura Whitfield

From Laura's list on The best books about personal resilience: taking risks, falling, and getting back up.

Kate Bowler has everything going for her—dream career, family—until she is diagnosed with Stage IV colon cancer at the age of thirty-five. In No Cure for Being Human, Kate gives us a close-up look into her tumultuous (and often humorous) journey. She challenges some of the go-to responses to our mortality and asks: When there just isn’t enough time, how does one spend it? Kate helps us feel our raw humanity, unfiltered. Her truth is painful, poignant, and, joyful. A call to living with eyes, and hearts, wide open.

Memoir of a Debulked Woman

By Susan Gubar,

Recommended by Helen Epstein

From Helen's list on The best books about getting through cancer treatment.

This is a scholarly memoir by a co-author of The Madwoman in the Attic, the feminist literary classic, and a professor of English and women’s studies at Indiana University. She was diagnosed with late-stage ovarian cancer in 2008, then a virtual death sentence. Gubar describes several stages of treatment including "debulking" and chemotherapy and the importance of a loving support system. The writing is sober, well-documented, comprehensive, and, though published ten years ago, all too relevant.