Through the Valley of Shadows: Living Wills, Intensive Care, and Making Medicine Human

by Samuel Morris Brown

Overview

Hospital intensive care units have changed when and how we die—and not always for the better.

The ICU is a new world, one in which once-fatal diseases can be cured and medical treatments greatly enhance our chances of full recovery. But, paradoxically, these places of physical healing can exact a terrible toll, and by focusing on technology rather than humanity, they too often rob the dying of their dignity. By some accounts, the expensive medical treatments provided in ICUs also threaten to bankrupt the nation.

In an attempt to give patients a voice in the ICU when they might not otherwise have one, the living will was introduced in 1969, in response to several notorious cases. These documents were meant to keep physicians from ignoring patients' and families' wishes in stressful situations. Unfortunately, despite their aspirations, living wills contain static statements about hypothetical preferences that rarely apply in practice. And they created a process that isn't faithful to who we are as human beings. Further confusing difficult and painful situations, living wills leave patients with the impression that actual communication with their physicians has taken place, when in fact their deepest desires and values remain unaddressed.

In this provocative and empathetic book, medical researcher and ICU physician Samuel Morris Brown uses stories from his clinical practice to outline a new way of thinking about life-threatening illness. Brown's approach acknowledges the conflicting emotions we have when talking about the possibility of death and proposes strategies by which patients, their families, and medical practitioners can better address human needs before, during, and after serious illness.

Arguing that any solution to the problems of the inhumanity of intensive care must take advantage of new research on the ways human beings process information and make choices, Brown imagines a truly humane ICU. His manifesto for reform advocates wholeness and healing for people facing life-threatening illness.

Product Details

ISBN-13:	9780199392957
Publisher:	Oxford University Press
Publication date:	04/29/2016
Pages:	288
Sales rank:	548,309
Product dimensions:	5.80(w) x 8.30(h) x 1.20(d)

About the Author

Samuel Morris Brown is Assistant Professor of Pulmonary and Critical Care Medicine and Medical Ethics and Humanities, University of Utah School of Medicine and founder and director of the Center for Humanizing Critical Care at Intermountain Medical Center. A practicing intensive care physician, researcher and award-winning historian of ideas, Dr. Brown writes at the intersections of medicine, ethics, and culture.

Table of Contents

Table of Contents

Acknowledgments

Introduction

SECTION ONE: PAST
Chapter 1. A Culture in Crisis
Historical Death Culture and the Dying of Death
Life Support and the Miracles of Resuscitation
The Rise of Intensive Care and "Life Support"
Life in the 1960s

Chapter 2. The Rise of the Living Will
The Findings of the Court
Legislation
Disclosurism and a Focus on Procedures
Improving enforcement
Futility, Financial Disaster, and Obligations to Society
Expanding horizons

Chapter 3: Empirical and Ethical Problems with Living Wills
Conceptual Problems with Living Wills
Pig Iron under Water: Living Wills Don't Apply in Real Life
Paradoxical Threats to Autonomy
"If I'm ever like that, let me die": Disability Stigma
The Limits of Prediction Make Living Wills Difficult to Use
Problems of race
Living Wills Can Backfire
Empirical evidence that Living Wills Don't Work

SECTION TWO: PRESENT
Chapter 4. Living Wills Don't Make Decisions; Human Beings Do
Thinking like a Human Being
What your Brain Doesn't Know Might Kill You
Affective forecasting and psychological adaptation
Things that Go Bump in the Night
Moral Distress
Moral Hazards
Choosing to See

Chapter 5. The Barbaric Life of the ICU
Barbarism and Brutality
The Experience of the Ventilator
Immobilization
Tubes and more tubes
The Brain under Siege
Terrible Communication
We Don't Always Know What We Want
Deforming Death in the Rush to Rescue

Chapter 6. Life after the ICU
A Few Visionary Researchers
The Post-Intensive Care Syndrome
Bodies
Muscles
Lungs
Brains
Psyches
Is It All Worth It?
The Tension between Outcomes Research and Advance Directives

SECTION THREE: FUTURE
Chapter 7. Reform: The Current State of the Art
Eliciting Values and Wishes
Registration Drives for Advance Directives in Wisconsin
Multimedia Persuasion
Tailoring Advance Care Planning
Decision Aids
Choice Architecture
The Science of Communication
The Conversation Project
Redesigning the ICU

Chapter 8. Healing the Intensive Care Unit
Let Families In
Fixing Code Status
Hope for the Best, Prepare for the Worst
Wrapping Up
Recognize the Crossroads
Create a Support Community
Create Space for Facilitated Farewells
Change the Framing to Manage Clinicians' Moral Distress
Changing Culture outside Medicine
Not Left Unsaid
Authentic Personalization
A Possible Map: Five Approaches to the ICU
Approach 1: Do Everything
Approach 2: Be Aggressive Only if I Have a Reasonable Chance of Recovery
Approach 3: Only Admit Me to the ICU if I Have an Excellent Chance of Recovery
Approach 4: Don't Admit Me to the ICU
Approach 5: Don't Admit Me to a Hospital; Focus Only on My Comfort
Epilogue. What Should We Do in the Meanwhile?

Editorial Reviews

"The critically ill in America survive more often than before, but not without trauma to themselves and their loved ones. What do we want done for us when we are at the end of our lives, or afflicted by terrible disease? Our attempts to discuss these questions with our families and doctors have foundered despite the best of intentions. To tell us how we got here, and point a way forward, we need a wise clinician-scientist, fluid writer, and careful thinker. Sam Brown is that person, and his book is a clear-eyed testimony to the weakness of checkboxes and the primacy of humane care." —Zackary Berger, MD, PhD, Johns Hopkins School of Medicine and author of Making Sense of Medicine

"Not everyone will agree with all of Dr. Brown's moral and clinical positions. But nobody will argue with the depth of his moral and emotional engagement with the profound question of reducing unnecessary suffering during serious illness. This is a valuable and groundbreaking contribution to the necessary debate about how we live, heal, and die-in hospitals and at home-and how medicine can do better to reduce unnecessary suffering." —Katy Butler, Author of Knocking on Heaven's Door

"In this compelling book, Dr. Brown vividly presents the urgent need to "re-humanize" all medical care, stressing that each patient is a unique person, whose humanity needs as much attention and understanding, and skilled care, as the patient's physical body. When one day our Intensive Care Units (ICUs) reliably provide caring-in which Respect and Dignity are as central as physical survival-it will be thanks to pioneers like Dr. Brown, and to those of us who heed his call to action in this book."—Lachlan Forrow, MD, Harvard Medical School

"It is hard to find a physician as comfortable quoting the latest ICU studies as discussing life and death in the Bible, the Crimean War and The Island of Dr. Moreau but Samuel Brown is that doctor. Through the Valley of Shadows is a remarkably comprehensive, thoughtful and moving guide to practicing compassionate care in a place-the ICU-where humanity often disappears." —Barron H. Lerner, MD, PhD and author of The Good Doctor: A Father, A Son and the Evolution of Medical Ethics

"By bringing life, history, and cognitive psychology to our ongoing conversation about advance directives, Brown highlights the limitations to our current approach to end of life care and offers a path forward. In a tone that is at once pragmatic, and deeply compassionate, Brown moves beyond legalese and overly-simple conceptualizations toward a vision of critical care that accounts for the lived experiences of patients and their families, as well as the doctors struggling to help them. I suspect this book will provide tremendous comfort, to all those struggling with these end of life decisions, while also providing a framework for a system of care that, by better serving the values of its patients, will ultimately relieve some of the unnecessary struggle." —Lisa Rosenbaum, MD, Harvard Medical School and Brigham and Women's Hospital

From the Publisher