“Perhaps one lesson to draw from the pandemic, with help from books like this one, is that the ICU experience can be changed for the better” (The Washington Post) for both patients and their families. You will learn how in this timely, urgent, and compassionate work by a world-renowned critical care doctor.
In this rich blend of science, medical history, profoundly humane patient stories, and personal reflection, Dr. Wes Ely describes his mission to prevent ICU patients from being harmed by the technology that is keeping them alive. Readers will experience the world of critical care through the eyes of a physician who drastically changed his clinical practice to offer person-centered health care and through cutting-edge research convinced others to do the same.
Dr. Ely’s groundbreaking investigations advanced the understanding of post– intensive care struggles and introduced crucial changes that reshaped treatment: minimizing sedation, maximizing mobility, and providing supportive aftercare. Dr. Ely shows that there are ways to bring humanity into the ICU and that “technology plus touch” is a proven path toward returning ICU patients to the lives they had before their hospital stays. An essential resource for anyone who will be affected by illness—which is all of us.
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About the Author
Table of Contents
Author's Note xv
Chapter 1 Fractured Lives-Embracing a New Normal 13
Chapter 2 Early History of Critical Care-Bumpy Gravel Roads to ICU Interstates 27
Chapter 3 Culture of Critical Care-The Era of Deep Sedation and Immobilization 45
Chapter 4 The World of Transplant Medicine-Harvesting the Right Path Forward 57
Chapter 5 Delirium Disaster-An Invisible Calamity for Patients and Families 75
Chapter 6 The View from the Other Side of the Bed-Illness Revisited 95
Chapter 7 Deciding My Path-Combining Research with Clinical Care 103
Chapter 8 Unshackling the Brain-Finding Consciousness in the ICU 115
Chapter 9 Awakening Change-Patients Are Resurfacing 133
Chapter 10 Spreading the Word-Putting New Ideas into Practice 155
Chapter 11 Finding the Person in the Patient-Hope through Humanization 179
Chapter 12 End-of-Life Care in the ICU-Patient and Family Wishes Can Come True 209
Resources for Patients, Families, Caregivers, and Medical Professionals 247
Books to Explore 276
Reading Group Guide
To help you enjoy fruitful conversations about the topics explored in Every Deep-Drawn Breath, we have created an array of questions so that you may choose those that are most helpful to you and your book club.
1. Dr. Ely opens his inspiring book with an Author’s Note, written directly to the reader. How did you feel on reading it? What tone does Dr. Ely strike in his note? Did it surprise you in any way?
2. Throughout Every Deep-Drawn Breath, Dr. Ely uses patient stories to show that science and medicine must be deeply rooted in humanity. Talk about a situation from your own life in which these elements were not integrated, resulting in a loss of true “whole person care”? Were you looking for something more from your physician?
3. As a medical student at Tulane, Dr. Ely tends to patients at Charity Hospital, a storied New Orleans hospital providing “health care to the poorest of the poor” (p. 2, Prologue), a place where he believes he has found his calling. What is it about Charity that inspires Dr. Ely as he works there and that stays with him throughout his medical journey?
4. Every Deep-Drawn Breath asks crucial questions about health care in general and critical care in particular, one of which is: “Should saving lives be a doctor’s prime focus in the ICU?” (p. 32, Chapter 2). Compare Dr. Ely’s treatment of Teresa Martin (pp. 7–8, Prologue) using the latest ICU technology to that of Sarah Bollich in her chipped metal bed at Charity (pp. 4–5, Prologue). Consider, too, how Dr. Ely’s bedside care differs in each case. Talk about the way doctors might have seen the outcomes of the two patients in terms of success versus failure.
5. Dr. Ely introduces us to Sarah Beth Miller, Richard Langford, and Anthony Russo and his family (Chapter 1) to show us the way critical illness can impact people’s lives, leaving them struggling with post-intensive care syndrome (PICS). Had you heard about PICS before reading Every Deep-Drawn Breath? If so, were you aware that it is brought on by ICU treatments and not by the illness that necessitated an ICU admission in the first place? And that it is in large part preventable? Do you know anyone with PICS? Or do you now think you may know people with it?
6. In tending to his transplant patients (Chapter 4), Dr. Ely undergoes a transformation both in what he wants for himself as a doctor and in how he wants to treat his patients. How does he reach these conclusions? How do his transplant patients, Marcus Cobb and Danny West, figure in his thinking? What does he mean when he states, “I finally had the whole person in my scope” (p. 69, Chapter 4).
7. In an especially heartrending chapter, Dr. Ely writes about his own daughter’s head trauma and her subsequent stay in the neuro-ICU (Chapter 6). What does he learn from his family’s experience? How does he believe he has been failing his patients as a doctor? What have they wanted from him that he hasn’t thought to offer? How does he carry forward the view from the left side of the bed?
8. Starting in the Prologue and threaded throughout the narrative, we see Dr. Ely’s love of literature, instilled in him by his mother, an English teacher and expert in Shakespeare. How do you think reading has influenced him as a doctor? As a person? As a writer? Do you think medical students should be encouraged to take literature courses?
9. What are epistemic injustice and testimonial injustice? How does Dr. Ely compound the anguish of Mr. Noy, the husband of a dying patient, by failing to provide a translator (p. 117, Chapter 8)? Talk about other examples of injustices in the book (p. 220, Chapter 12) or in your own experience—and find ways that it is addressed as Dr. Ely grows as a doctor and brings humanity into the ICU.
10. Discuss the expression “malignant normality” (p. 131, Chapter 8) and the way it may have taken place in critical care. Are there other instances in health care—or in other parts of your experience—where this may have happened, too? How can we counteract malignant normality both within medicine and society at large?
11. As Dr. Ely recounts his research journey into the potential harmful ramifications of deep sedation and ways to mitigate them, his narrative invokes metaphors of water and drowning (Chapters 7 and 8). Did you find the descriptions apt? Was it surprising for you to learn how hard it is to chart someone’s levels of unconsciousness? Where do you think people “are” when they are unconscious?
12. As Dr. Ely and his colleagues roll out the A2F bundle to ICUs across the country, critical care nurse Mary Ann “Jett” Barnes-Daly says, “Trying to sell people on mortality reduction isn’t really meaningful to them. You have to sell patients’ stories” (p. 172, Chapter 10). Thinking about your own life experiences (or those shared by Dr. Ely), can you recall examples of how the power of story was used to bring people on board with new ideas, to change entrenched cultures, or to bring data or scientific concepts to life? Why do you think stories work to effect change? For example, how might this tool of “human story” be used in situations such as overcoming vaccine hesitancy?
13. One of Dr. Ely’s mantras is “finding the person in the patient.” What do you think he means by this? How does the depersonalization chamber (p. 180, Chapter 11) come into play when a new patient is admitted to the ICU and what can health-care professionals do to limit its power? What do you think is meant by person-centered care rather than patient-centered care?
14. In an effort to see his patients fully as people temporarily uprooted from their lives, Dr. Ely strives to be aware of “upstream factors” (p. 205, Chapter 11). What does he mean by this? How do social determinants of health affect a patient’s ability to access health care? How can the medical community become better engaged with the prevalence of social injustice and racism in health care?
15. Discuss the evolution of the ways in which a patient’s loved ones have been treated over the years—from being a perceived burden to health-care professionals to becoming a vital member of the team as noted by the “F” in the A2F bundle (e.g., pp. 25–26, Chapter 1; pp. 93–94, Chapter 5; p. 217, Chapter 12). How did these changes take place? How can families be helpful to their loved ones? To the health-care team?
16. As a young doctor, Dr. Ely kept index cards for each of his hospitalized patients and found it difficult to revisit the cards of those who died (p. 49, Chapter 3), viewing their deaths as failure. How has his thinking changed over the years? What are his aims now when he knows that someone in his care is dying? How can speaking about death with patients and their family be helpful, a part of the mission of “good medicine” and not failure?
17. Many people working in health care are experiencing high levels of burnout—especially throughout COVID-19. Dr. Ely talks about compassion as an antidote (p. 225, Chapter 12). How might the A2F bundle also be a burnout prevention program?
18. In the Epilogue, Dr. Ely tells us the story of meeting the outsider artist Clementine Hunter when he was a young boy (p. 239, Epilogue). How did he interpret her teachings about different aspects of life and the fact that he had choices to make? What did he come to understand about Clementine as he grew older?
19. While, in many ways, the coronavirus pandemic set back hard-won progress in bringing humanity into critical care treatment (pp. 235–36, Epilogue), discuss lessons learned during COVID-19 in the ICU and the way they will help patients in the future.
20. Every Deep-Drawn Breath ends with a message of hope, that there are ways to combine technology with touch in the ICU, that there is a place there for “figs, or honey on a spoon, or a bar of music” (p. 245, Epilogue). Think back to Dr. Ely’s descriptions of his early patients, deeply sedated and paralyzed for days, and compare them to patients such as Janet Keith (p. 176, Chapter 10) and Titus Lansing (p. 186, Chapter 11), who received the A2F bundle. What are some of the differences in care—and in the medical outcomes? How far do you think Dr. Ely has succeeded in his mission to right the wrong of “adopting a treatment approach that damaged many people’s lives” (p. 234, Epilogue)?
Guide by Lindsey Tate, with special thanks to Betsy Sloan, Caleb Sokolowski, Peter Dimitrion, and Dr. Sylvia Perez-Protto for comments and calibrations.