Why We Revolt: A Patient Revolution for Careful and Kind Care

By Victor Montori

The Mayo Clinic physician and founder of The Patient Revolution offers a “thoroughly convincing. . . call to action for medical industry reform” (Kirkus).
 
Winner of the 2018 PenCraft Award for Literary Excellence, Why We Revolt exposes the corruption and negligence that are endemic in America’s healthcare system—and offers a blueprint for revolutionizing patient care across the country. Through a series of essays and first-hand accounts, Dr. Victor M. Montori demonstrates how the system has been increasingly exploited and industrialized, putting profit before patients. As costs soar, the United States continues to fall behind other countries on patient outcomes.
 
Offering concrete, direct actions we can take to bring positive change to the healthcare system, Why We Revolt is an inspiring call-to-action for physicians, policymakers, and patients alike. Dr. Montori shows how we can work together to create a system that offers tailored healthcare in a kind and careful way.
 
All proceeds from Why We Revolt go directly to Patient Revolution, a non-profit organization founded by Dr. Montori that empowers patients, caregivers, community advocates, and clinicians to rebuild our healthcare system.

• Language: English
• Publisher: Open Road Integrated Media
• Release date: Sep 29, 2020
• ISBN: 9780795352959

Book preview

cover, Why We Revolttitle page: why we revolt, a patient revolution for careful and kind care, second edition, by Victor Montori

Published by Mayo Clinic Press

© 2020 Victor Montori

First electronic edition published 2020 by RosettaBooks LLC, New York.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording, or otherwise, without the prior written permission of the publisher.

The information in this book is true and complete to the best of our knowledge. This book is intended as an informative guide for those wishing to learn more about healthcare issues. The author and publisher disclaim all liability in connection with the use of this book. The views expressed are the author’s personal views, and do not necessarily reflect the policy or position of Mayo Clinic.

ISBN (epub): 978-0-7953-5295-9

ISBN (print): 978-1-893005-62-4

Library of Congress Control Number: 2020938371

Second edition

Advanced praise for Why We Revolt

We revolt because our health — our very lives — matter. Why We Revolt does not serve as a blueprint but as an inspiration for patients and clinicians who are ready to pry open the idea of healthcare and make it about actual health and care. This book is a necessary catalyst for conversations that will revolutionize patient care.

— Kerri Sparling, diabetes patient advocate and creator of sixuntilme.com

This profoundly humanistic examination of what has gone wrong in medicine has the diagnosis just right. This book is for everyone who will ever be a patient, for every health professional, and for every administrator and policymaker.

— Gordon Guyatt, physician, researcher, and one of the founders of evidence-based medicine

I went into medicine to interact with real, unique, emotive humans. Why We Revolt brings healthcare back to this primary love of and care for patients.

— Sara Segner, medical student

Montori begins with a gut punch that stays with you throughout this powerful, sobering, eye-opening book. After expertly diagnosing the roots of industrial healthcare problems, he passionately plots a patient revolution. Policymakers, clinicians, patients, and journalists should set aside the very little time needed to absorb this gem and learn from its lessons.

— Gary Schwitzer, journalist and publisher of healthnewsreview.org

If someone gave you this book, that person was probably hoping to advance a patient revolution.

I hope you can do the same.

Keep this copy, get another one, and give it to someone else.

To share your stories or send me a note:

[e-mail] or @vmontori on Twitter.

To review notes and links to online resources for each chapter:

patientrevolution.org/whywerevolt

To join and contribute to The Patient Revolution:

patientrevolution.org

Thank you, and take care.

V

Contents

Prologue to the second edition

Introduction: Revolt

Part One

Chapter 1: Cruelty

Chapter 2: Blur

Chapter 3: Greed

Chapter 4: Burden

Chapter 5: John

Part Two

Chapter 6: Elegance

Chapter 7: Solidarity

Chapter 8: Love

Chapter 9: Amanda

Chapter 10: Integrity

Part Three

Chapter 11: Timelessness

Chapter 12: Careful

Chapter 13: 92

Chapter 14: Conversations

Chapter 15: Cathedrals

Part Four

Chapter 16: Fear

Epilogue

About the author

Acknowledgements

To my sons

Prologue

to the second edition

Why We Revolt describes the obvious and prescribes the impossible. This was my fear, three years ago, when this little book first appeared. And yet, Why We Revolt has gone on to be read in clinics and in academia, and discussed in pubs, cafés, and living rooms, on Twitter chats and podcasts. There, the book has added its voice to an emerging consensus for change. It offered the choir — tired of drawing from the songbook of despair — words for their songs of hope.

You are now reading the second edition of Why We Revolt. This edition, no longer self-published, has a better chance to reach further and to continue to create meaningful conversations among its readers and this humbled, surprised, and grateful author. I imagine it sharing its language and hopeful call with many more people like you. People who, like me, are no longer satisfied with knowing the difference between what is and what should be. In the years since Why We Revolt first appeared in 2017, this difference has expanded, and we have grown hungrier for a revolution.

Because the road is long and our mission urgent, let’s embark now on a patient revolution. Let’s bring this little book with us if only to remind us that there is a chance that our actions today can bring about careful and kind care for all.

_______

The second edition of this book coincides with a global disaster. A pandemic of febrile breathlessness has galloped into our lives along with fear, disinformation, and isolation. To outsmart the virus, we have to stay away from each other. At the moment of this writing, the virus has decimated the closeness, the kiss, the handshake, the hug, the presence, the touch.

This pandemic, however, is like an urban redevelopment that accidentally unearths ancient ruins, revealing something new about our present selves. COVID-19 has made evident our core humanity, the care in our hearts and in our hands. To outsmart the virus we had to be apart, but we reduced social distancing to physical distancing and solidarity took hold. We found ways to sing from apartment windows and rooftops, to play bingo from across the street with lonely and frightened nursing home residents, to leave gift boxes for waste collectors, to build tents on bullfighting arenas to house the homeless, and to come together to ensure everyone had a meal. We sent poems, cards, letters, and notes to strangers and to estranged friends and relatives. The world slowed down and families experienced conversation, of the unhurried type.

Clinicians responded to the privilege of the bedside by showing up and caring, despite the risk of contagion. They reached out to patients with ongoing conditions, those pushed away by overwhelmed hospitals, and cared for them where they were, minimally disrupting their lives.

Communities turned toward caring for each other. The care of patients became more careful and kind.

Our revolution was validated; its goals feasible, existing, here, now.

We must not forget this.

Industrial healthcare, as this book describes, long ago stopped caring. The pandemic simply exposed with even more clarity the corruption of its mission. National and corporate leaders made the same calculations as did opportunists and profiteers. Getting more ventilators was too expensive, and a breathless elderly person asked his clinician to save the available ventilator for the breathless young person. Masks and other protective equipment were made scarce and expensive, and exposure to the coronavirus increased unnecessarily. Because of this, an exhausted clinician returned home to sleep in the basement, quarantined from her small children. Their distant giggles were made to seem closer by her phone, her kisses pushed against the hard surface of the screen. Because of this, visitors were kept outside of hospitals and nursing homes and those inside were left to suffer without a hand to hold, and to die alone.

Eventually, we will become immune to the virus. Then the smiles will appear from behind their masks, handshakes will become ungloved, and hugs tightened. With fraternity no longer the vector, we will learn to trust the air between us, and we will touch again. The singers will descend from their balconies and rooftops onto our plazas to sing songs of togetherness. The lonely will be touched; the scared will be relieved.

But then, we will wake up. Most likely, this new day will not find us hugging or singing with strangers, but conducting our business as usual. The post-pandemic economic crisis will argue urgently for deepening the industrialization of healthcare, for making healthcare more efficient, standardized, automatic, artificial, and generic. More profitable, less caring. A better reflection of a society of people who, mobilized for productivity, will quickly forget how solidarity carried them through the long night. Once again, a dawn of care, kindness, and love will seem poetic, utopic.

This book argues for a different day after. Not a day for celebration, because the old normal of cruelty and greed are ready to make this day their own. Rather a day, improbable but no longer impossible, in which we will recognize in each other the scars of that long night, a reminder of our common fate. A day in which we will remember that our human business is to care for and about each other. We will remember that we have done this before, and we will remember the songs.

And, at daybreak, we will revolt for careful and kind care for all.

Victor Montori

Rochester, Minnesota

April 2020

Introduction

Revolt

George Orwell proposed that one must write, among other reasons, to see things as they are, to find out true facts and store them up for the use of posterity. This book arises from my need to do just that. And what I see is that healthcare has corrupted its mission, it has stopped caring, and I am not willing to go along with this. It is time for a patient revolution to bring about careful and kind care for all.

This book also documents my sense of what is wrong about industrial healthcare. Industrial healthcare fails to notice patients. It standardizes practices for patients like this, rather than caring for this patient. Efficient specialization and narrow job definitions drive industrial healthcare’s focus toward organs, diseases, or test results. Rigid protocols and fear of deviating from them miss the person. Systems that prioritize access and volume place very little value on the length and depth of the interaction between patients and clinicians. Forcing encounters to be brief and shallow speeds patients through consultations in which clinicians cannot appreciate their patients’ situation fully. Failure to notice is also the effect of encounters bloated with industrial agendas, such as documentation and billing, which draw attention away from patients and toward the computer monitor, distracting from care to document it.

How does care then take place when the patient is unnoticed, sometimes little more than a blur? Judging from the stories that clinicians and patients tell, care happens almost by mistake, when someone takes exception to or ignores protocols. In the absence of these accidents, of these caring mistakes, the industry is capable of harm through unintentional cruelty. As it makes care accidental and cruelty incidental, industrial healthcare marches on to produce fortune and power. By focusing on its industrial goals, healthcare forgoes caring.

The harm is done not only to patients. Industrial healthcare is killing the healer’s soul. Enforced productivity depletes clinicians. Under efficiency pressures, clinicians cannot draw meaning from fleeting patient visits. They cannot get support from sped-up colleagues. They feel abused and without love — and unable to love. Burnout, divorce, and suicide become inherent to the work of healthcare, the healer’s curse. Industrial healthcare has stopped caring for both patients and clinicians, everyone at the frontline.

Many of my patients, my family, and I have benefited greatly from the wonders of modern healthcare: expert surgical teams, clean and efficient facilities with all the necessary equipment, carefully organized services that collaborate and coordinate, well-trained professionals who cordially attend to those who are sick and invest each one with dignity. All this is possible. It happens, just not routinely or by default.