BOOK REVIEW: Humanity and relationships in health care
Reviewed by J. Van Aerde, MD, PhD
Bird’s Eye View: Stories of a Life Lived in Health Care
Bird Communications, 2019
Breathe Baby Breathe! Neonatal Intensive Care, Prematurity, and Complicated Pregnancies
Annie Janvier, MD, PhD
University of Toronto Press, 2020
In Shock: My Journey from Death to Recovery and the Redemptive Power of Hope
Rana Awdish, MD
St. Martin’s Press, 2017
These three books deal with relationships, perceptions, and suffering as perceived by people who have experienced the health care system from different angles. One author was a student nurse, an administrator, the mother of a child who needed help, an advocate for children and families in a children’s hospital, and finally a patient. The other two authors are physicians. One is the mother of an extremely-low-birth-weight infant who was admitted to the neonatal intensive care unit (NICU) where she and her husband practise as academic neonatologists. The other is an intensivist who became a patient in her own ICU and nearly died, twice. Top
All three books are about mental models and culture, which, in turn, affect mutual understanding and misunderstanding in the health care system. They are about feelings and suffering, about empathy and compassion, and about how to communicate appropriately and effectively. They are about humanity and relationships.
In Bird’s Eye View, Sue Robins weaves together anecdotes from a journey through the health care system in Edmonton and Vancouver. Each story contains a small lesson worth reflecting on. Robins is directive in some of her stories, but then, she has experienced the health care system from so many angles that she is entitled to give advice. Top
After two years as a nursing student, she left when she discovered it was not okay to experience feelings when you work in health care. That was three decades ago. Then, she spent a good amount of time as an administrator in several settings. When she became the mother of Aaron, her third child, she stepped out of the administrative world of health care and navigated the system from the outside, for and with Aaron, who was born with Down syndrome.
In the book, Aaron’s journey reveals, not only the stigma language imposes on parents whose child falls outside society’s “norm,” but also the difficulty of trying to create a consistent plan for a child within a fragmented system. During this time, Sue becomes a volunteer advocate for family-centred care at the children’s hospital Aaron frequents for medical and surgical care; later she is hired as a family-centred care consultant. Top
Finally, Sue plays yet another, very different role in our health care system when she becomes a patient with breast cancer needing surgical and post-surgical treatment. The stories in that section reveal what goes on in her mind while she continues to seek compassion and healing relationships. Here are a few pearls of wisdom that struck me. “The secret is to never assume how a person might feel. The other secret is that even if you have had cancer yourself, don’t assume others experience it in the same way that you did.” “It is easy to be kind, it does not take more time, kindness is up to individuals, and lack of kindness cannot be blamed on ‘the system.’ Never forget the system is made up of people.”
The book is about assumptions, perceptions, mental models, kindness, and empathy. It is about humanity and relationships, one at a time. This is not a book to be read all at once, but rather one or two anecdotes at a time, sometimes even skipping one, but making sure to leave time to think about what the stories might mean in your part of the health care system, today from your perspective as physician, perhaps tomorrow as patient. Top
Breathe, Baby, Breathe! by Dr. Annie Janvier from Montréal tells the story of an extremely-low-birth-weight infant, born after 23–24 weeks of gestation to parents who are both academic neonatologists, the mother also with a PhD in ethics. Janvier is that mother.
This is not another textbook for parents of a preterm baby, explaining the many complications their baby might develop. In journal entries that are conversations with herself and her computer, Janvier tries to come to grips, not just with her baby’s poor prognosis, but also with the chances of survival of herself as a mother and of her family unit. The reader feels the pain of a mother in despair, a mother who is convinced she is failing, of somebody who goes through a mental breakdown ultimately ending in post-traumatic growth.
Janvier knows the facts, the discouraging data: her child has about a one-in-three chance of surviving and a high probability of long-term difficulties. The outlook becomes more dismal when the infant develops overwhelming sepsis with multi-organ failure and the parents must decide whether to continue aggressive treatment. Although Janvier and her husband knew all the facts, they didn’t understand how inadequate data and statistics would be in the face of overwhelming emotions. “Being a parent in the NICU changed me,” she writes. “I hit bottom. I learned how easy it is to fall, and how fast it can happen.” Top
Janvier came to understand how much she didn’t know. As a neonatologist, she had written an information sheet for parents whose pre-term babies were admitted to the NICU. The information was mostly facts about the baby’s chances of survival and about the possible long-term complications associated with prematurity. She once thought that such information was crucial, but as a parent, she saw how wrong she was. “My husband and I had all the necessary knowledge… but, in fact, we knew nothing, nothing at all.”
The book recreates Janvier’s experience in a very raw manner, as she describes her rage and sometimes chaotic thoughts. At times, I wanted to put down the book, because I no longer wanted to feel the suffering of a mother who had spiraled down into such dark places. However, Janvier also shares the lessons she learned. Her experience led her to change the way she interacts with parents and to improve doctor–patient communication to guide parents through the emotionally treacherous minefield of the NICU. Top
There are interesting similarities between Breathe, Baby, Breathe! and Bird’s Eye View. In both, health care professionals are not communicating appropriately, don’t acknowledge the suffering, and are perceived as lacking empathy and compassion. What struck me most were the almost identical quotes by Robins, “The secret is to never assume how a person might feel” and Janvier, “I have become intolerant of health professionals who presume to understand what parents need without asking them.” Why do we, as physicians and health care professionals, assume to know our patients’ needs, why do we base those assumed needs on data, and not on the emotions and feelings of those we care for? (BTW: Janvier’s baby survived and, at the age of 16, is doing well, against all odds and statistics.)
Dr. Rana Awdish’s experiences in the health care system go even deeper, as she ends up as a patient in the ICU where she is one of the intensivists. I read In Shock in two evenings, a dramatic, engaging, and instructive page-turner, not only because of the beautiful writing style, but also because the story and experiences are hair-raising, almost unbelievable. At the end of those two days, some of my thinking related to communication, presence, feelings, and com-passion had changed. It made me rethink my own mortality, not in general, but in a hospital setting or an ICU, and how scary that would be. Top
Awdish survived two life-threatening events, one including an out-of-body experience that she doesn’t belabour, and lived with chronic organ ailments for a few years. She was seven months pregnant when she experienced a massive bleed with hemorrhagic shock and hemoglobin concentration as low as 30 g/L, caused by what was thought to be severe HELP syndrome. She recovered over a few months, returned to work for a short time, and ended up in the ICU again, this time for what really caused her bleeding: hepatic adenomas. She then developed every possible complication in the textbook, including sepsis. She works and was a patient in a hospital that had researched sepsis in adults, she gave the pertinent information to the professionals, all the while feeling herself sink deeper and deeper into septic shock; no one listened, no one heard what she was saying.
As a patient in her own unit, this ICU doctor disliked what she heard, saw, felt, and experienced. In many instances, she perceived her peers as being unable to see human suffering as it is, often protecting themselves against the pain she says the profession doesn’t allow us to feel. She felt disappointment in herself when she realized that she failed similarly as an intensivist on the other side of the equation. Top
Some of the insights she presents hit home and force you to challenge your own practice, assumptions, and mental models regarding feeling, emotions, and compassionate care. She finds that emotion is a common language through which patients can and need to connect with physicians and the health care team.
As a result of her experiences, she not only formulated suggestions at the end of her book, but she also designed a full learning program on communication and empathy/compassion, which is used inside and outside her institution. A few quotes I remember: “Even when we intend to do no harm, it seems we lack the necessary tools to heal without layering some added suffering. Our greatest gift is our ability to absolutely be present with suffering.” “How often does anyone listen generously, without their ears pre-tuned to what they hope the answer will be?” “Medicine cannot heal in a vacuum; it requires connection.” Top
All three of these books make us pause and reflect on our professional relationships, our understanding of how and what we communicate, our mental models, empathy and compassionate care in the face of suffering, and what these constructs mean in our relationships. If I had to summarize the books in three words, it would look like this: medicine = humanity = relationships.
Johny Van Aerde, MD, PhD, FRCPC, is editor-in-chief of the Canadian Journal of Physician Leadership and executive medical director of the Canadian Society of Physician Leaders.