Each year, the Gold Foundation compiles a list of great reads for clinicians who care about the human experience of illness, who care about caring in their role as a healthcare professional. These thought-provoking reads, all published since we released our last list, are presented in alphabetical order by author. If you have a suggestion for next year’s list, please email email@example.com.
Healing: When a Nurse Becomes a Patient by Theresa Brown, RN
Theresa Brown is a former oncology nurse and a hospice nurse who is diagnosed with breast cancer. As she writes in the prologue of Healing, “I figured I was knowledgeable enough about having cancer because I knew about specific cancers, that I understood cancer patients’ feelings because I’d cared for so many, that I’d confront mortality because I’d had a number of patients die. But I was wrong. Other people’s mortality is categorically different than one’s own.” In this moving memoir, Ms. Brown shares her disorienting shift from healthcare professional to patient, how illness upends identity, and the particulars of this cancer that will strike 1 in 8 women in America in their lifetimes. Her keen observations and personal moments illuminate an often-hidden experience and emphasize the essential role of compassion in healthcare.
The Beauty of Dusk by Frank Bruni
One morning, New York Times columnist Frank Bruni wakes up with what seem like floaters in his right eye, perhaps from a few too many glasses of wine the night before. As time wears on, he learns that he actually has had a non-arteritic anterior ischemic optic neuropathy, or NAION, which affects something like 1 in 10,000 people. His sight is severely diminished, and he has a risk – the percentage of which fluctuates – of losing his sight in the other eye, too. (One of the many myths he debunks is that people who are blind see nothing at all and are in pure darkness; in fact, most people who are blind have some sense of the light or shapes.) The uncertainty of his new situation sets Mr. Bruni on a path of investigation: of vision and its precariousness, of living as a blind person, of the elements of a good life, of how others who are blind have deliberately shaped their own marvelous lives. His reporter-oriented wonderings, through his medical care and his work at facing the fresh challenges, lead to a fascinating and informative read for clinicians and anyone.
The Deep Places by Ross Douthat
Ross Douthat is a New York Times columnist who moves with his family to a dream farmhouse in rural Connecticut, an idyllic spot that is also home to many deer with ticks who carry Lyme Disease, which soon strikes him. Mr. Douthat begins a yearslong health struggle to find a cure, a balm, or really anything at all to help. In his quest, he encounters medical camps with differing views on Lyme Disease and how to treat it. He sees up close the all-too-common discounting of patients with severe, long-term, and shifting symptoms. This existential threat also prompts wide-ranging internal reflection and a surveying of the enormous, hidden world of the chronically ill. Mr. Douthat observes how quickly an illness becomes old news to everyone but the person who is sick. He chronicles his winding path of treatments, which begin with a traditional physician prescribing a standard protocol and, when that route yields no relief, go veering wildly into the experimental woods. This is a highly readable, gripping account, an unforgettable story that is valuable to clinicians and patients alike. As he shares in the closing pages, he wrote this personal book not only for “those who are chronically suffering” but also “for the skeptical doctors and doubtful experts who are so often the targets of long-suffering Lyme patients’ fury and suspicion, in hopes of convincing them to see more clearly the enfleshed reality of a chronic, life-stealing disease.”
Every Deep-Drawn Breath by Dr. Wes Ely
The average person in America will have more than 1 stay in an ICU in their lifetime, writes Wes Ely, a pulmonary and critical care physician at Vanderbilt University Medical Center and Founder and Co-director of the Critical Illness, Brain Dysfunction, and Survivorship Center. ICUs offer life-saving treatment, but, as Dr. Ely discovers, the standard ventilator “sedate and immobilize” protocol can also lead to terrible reduction in some patients’ quality of life afterwards. The culprit is PICS, “post-intensive care syndrome,” which afflicts millions yet is unknown to the public and even many clinicians outside of the ICU world. PICS is a debilitating condition composed of brain problems – think of this as “ICU-acquired dementia” – and physical disabilities – “ICU-acquired muscle-and-nerve disease.” With great empathy, Dr. Ely shares stories of his patients who have PICS, their frustration at “brain jumble” and their weakened bodies, and the way many of them have had to leave careers and aspects of their life they love. In a hunt for a solution, he learns of ICU colleagues in the Netherlands and other sites who are experimenting with a radically different method and seeing much better results: Keeping their patients awake and moving while on ventilators. Could it be done in the U.S.? In fact, after he begins testing it, he realizes the classic protocol can and “should be discarded.” This is a heartfelt, important book for both clinicians and for family members who are advocating for patients in the ICU.
Left on Tenth: A Second Chance at Life by Delia Ephron
This true story begins for Delia Ephron, well-known writer of screenplays and novels, after the loss of her two favorite people: Jerry, her husband of 33 years, and Nora, her sister, famous for such movies as Sleepless in Seattle. Nora died after years of privately battling a rare blood cancer that could also afflict Delia. (“Left on Tenth” refers to both the literal directions to Ms. Ephron’s New York City apartment and her feeling of loss after Jerry’s and Nora’s deaths.) The book follows a journey of surprises in the aftermath of grieving, beginning with a startling email from a psychotherapist who says he and Delia dated back when they were 18. In one charming message after another, the two 70-somethings proceed to fall madly in love. What lands this delightful book squarely on our list for compassionate clinicians is the intimate look at Ms. Ephron’s experience as a patient when she is diagnosed with the same cancer that killed her sister, including coping with fears and uncertainty, dealing with an unhumanistic doctor and finding a more empathetic one, and navigating the darkest moments of treatments. And sometimes, a story of illness with a happy ending is just the right prescription.
The Urge: History of Addiction by Carl Erik Fisher
Carl Erik Fisher winds through two epic threads in The Urge: a sprawling history of addiction and his own personal journey of addiction and recovery. The book begins when he is 29 in New York City and finds himself both a psychiatry resident at Columbia and a psychiatric patient at Bellevue, the oldest public hospital in America. In the years following, as he goes through treatment after treatment, he gets an intimate look at the disjointed and broken U.S. system of addiction treatment – “even the word ‘system’ is a bit of a stretch,” he notes. How did we get here? Why? In a quest for greater understanding, he traces the ideas around addiction over the centuries, through Aristotle and Plato, Christopher Columbus’ exploration, the “Gin Craze” in England in the 1700s (and the first urban drug epidemic), and America’s Prohibition Era, up to the current opioid crisis (with many, many side tales). Dr. Fisher also draws on lessons from his own patients and his own deep questions: How should we think about addiction? How should we view someone is suffers from addiction? What does it mean to be addicted? How is your identity affected? What is the path to recovery? There are few clear-cut answers, but they all reside in what he observes as a core truth: “Questions about addiction are questions about what it means to be human.”
The Facemaker: A Visionary Surgeon’s Battle to Mend the Disfigured Soldiers of World War I by Lindsey Fitzharris
Medical historian Lindsey Fitzharris chronicles the amazing work of Dr. Harold Gillies, a groundbreaking, compassionate surgeon who specialized in repairing facial disfigurements of soldiers during and after World War I. Some 8-10 million soldiers were killed in that global war, and more than double that were injured. New weapons – like the German Flammenwerfer, or flamethrower, which propelled burning oil at soldiers – wreaked incredible pain and damage at a scale never seen before. Facial wounds were particularly horrific, both robbing the soldier of his previous identity and causing the public – and often their dearest family, friends, and (frequently former) fiancées – to recoil in revulsion. Dr. Gillies understood how physical appearance, especially at a time in history when a face was thought to be the outward projection of character, played a major role in a person’s mental health and happiness. He established the Queen’s Hospital in Sidcap, England, “one of the first in the world dedicated solely to facial reconstruction,” and set about doing whatever he could to help injured soldiers, bringing both a mighty determination and a happy, even sometimes mischievous personality that brightened the days of his patients and colleagues. This captivating recounting details how he adapted rudimentary methods and invented new surgical techniques, all while keeping the humanity of his patient close to his heart and work. Accompanying the heart-wrenching personal stories is a section of black-and-white photographs that illuminate the severity of the injuries and the incredible recoveries, thanks to Dr. Gillies’ skilled hands, creative thinking, and keen empathy.
The Invisible Kingdom: Reimagining Chronic Illness by Meghan O’Rourke
The realm of the sick is already difficult terrain, but for those with mysterious, hard-to-identify illnesses, the landscape is much more threatening and bewildering. Meghan O’Rourke, a long-time writer and editor, and currently Editor of The Yale Review, found herself in such a disorienting place. As she probes the contours of her experience, she also investigates the wider realms of illness, cures, identity, and their ideas and puzzles, especially the vexing issues that emerge from autoimmune disorders, in which the body’s immune system attacks itself. “The entanglement of self and sickness became a mirrored distortion,” she explains, “a fun house I feared I was never going to escape, when I realized that I couldn’t tell whether my ‘self’ was attacking ‘myself’ without ‘my’ knowledge or influence.” This book, she writes, “is a personal and incomplete record of my need to fathom something that neither I nor anyone else, it seemed, could understand. But it is also an attempt to synthesize what I’ve learned along the way, as I read, researched, and interviewed scientists, doctors, and patients. I wrote this book not only to try to explain the experience of being ill myself, but also to help others confronted with the obstinate reality of a hard-to-identify chronic illness.” Her story, told through an editor’s sharp and sensitive eyes, with telling details, exquisite lines, searing observations, is a gift for both patients and clinicians.
Write for Your Life by Anna Quindlen
This short meditation is a perfect book to dip into to remind yourself of the healing power of writing. Anna Quindlen is a Pulitzer Prize-winning columnist and bestselling novelist; the Gold Foundation awarded her the National Humanism in Medicine Medal in 2018 for how she evokes humanism in her writing and allows her readers, in both her national reporting and in her fictional worlds, to connect with other humans and see them anew, with empathy. That magical touch is present here, too, as she contemplates our modern world and the salve of writing in her signature keen and kind observations. She nudges the reader to write with gentle encouragement and calm authority. One example: “Here is the rule about when and where to write: There is none.” She continues, in bold, no less: “How it’s done is how you do it.” Clinicians make the pages, too, including Dr. Laura Vater (a Gold Humanism Honor Society member and past Gold Writing Workshop participant); Dr. Rita Charon, the founder of Narrative Medicine; poet Dr. Rafael Campo; and several other healthcare professionals. Ms. Quindlen notes, of doctors and nurses, “There is a quietly growing sense that there are few professions in which the kind of contemplation and self-examination that writing offers and requires is more necessary.”
Just Human: The Quest for Disability Wisdom, Respect, and Inclusion by Arielle Silverman, PhD
In this memoir, Arielle Silverman unpacks lessons on inclusion she has learned as a woman who was born blind. She chronicles the evolution of her understanding of what being blind means to herself and what it means to others. “For me, blindness has always felt as natural as breathing. I don’t long for sight any more than somebody might long for the ability to fly, an invisibility cloak, X-ray vision, or the ability to read minds,” Dr. Silverman writes, continuing later, “Yet, I learned from a young age that blindness bothers many other people. I have heard of blindness described as a tragedy, a curse, a devastation, or a prison sentence. In population surveys, blindness is rated as one of the most feared ‘diseases’ surpassed only by cancer and AIDS. Much of my life has been spent on trying to understand how a condition that feels so normal and inconsequential to me would be so upsetting to outside observers.” Read a longer book review of Just Human by Dr. Dorothy Levine, former Director of the Gold Humanism Honor Society.
Under the Skin: The Hidden Toll of Racism on American Lives and On the Health of Our Nation by Linda Villarosa
COVID-19 brought to sharper and more widespread public light the divide in health and healthcare experienced by people of color in America compared to white people. For those wanting to understand the deep roots of this divide better, Under the Skin is essential reading. Linda Villarosa is a journalist – a writer for The New York Times Magazine, contributor to the 1619 project, and journalism professor at the City University of New York – and she brings all the rigor and heart of a seasoned reporter to this enormous and important story. She chronicles horrors in American history, racist laws and policies with far-reaching reverberations, and the palpable, particular experiences of the people who have lived through them – or, too often, died because of them. She carries both a clear view of the past and hope for a better future. As she notes in the introduction: “Since the first African enslaved men, women, and children reached American shores, there has been a Black-white divide in who survives, how they live, and who dies, from birth to the end of life. Despite decades of social, economic, and educational progress and what has unquestionably been the rise of a robust Black middle class, racial health disparities have remained intact. Yet something about being Black is creating a health crisis, and that something is racism. It is the American problem in need of an American solution.”
The Song of Our Scars: The Untold Story of Pain by Haider Warraich
The Song of Our Scars is a multi-faceted book: a scientific and philosophical investigation of a sensation we all know acutely, a wide-ranging history up through the opioid crisis, and a personal reflection of the author’s own journey of chronic pain in his lower back, the most common area of pain in the world. Haider Warraich is a cardiologist at Brigham and Women’s Hospital and the VA Boston Healthcare System and Assistant Professor at Harvard Medical School. “Pain is a fundamental truth,” he begins. “… Pain is one of the most consistent aspects of the consensus reality we all experience, a hallmark of consciousness among all beings, hardwired into our frames through evolutionary mechanisms millions of years in the making.” Dr. Warraich describes pain as “one of three distinct but overlapping phenomena”: nociception (the physical process in all living things in which a stimulation is detected and transmitted), suffering (“an entirely psychological experience that appears to be felt only by advanced animals”), and pain (“both sensation and emotion, both physiological and psychological, which is most often caused by nociception and frequently causes us to suffer”). In explanations such as this, and many more complex contemplations, Dr. Warraich tackles topics like navigating a career (or the loss thereof) and chronic pain, total pain, the narrative of pain, pain acceptance. He gifts to readers profound questions and concepts that can serve both as intellectual, human inquiries and as keys to a better, helpful personal understanding.