An Epidemic of Empathy in Healthcare Read online

  Copyright © 2016 by Thomas H. Lee, MD. All rights reserved. Except as permitted under the United States Copyright Act of 1976, no part of this publication may be reproduced or distributed in any form or by any means, or stored in a data base or retrieval system, without the prior written permission of the publisher.

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  For Soheyla

  Contents

  Acknowledgments

  Introduction

  CHAPTER

  1 The Problem

  CHAPTER

  2 The Imperative

  CHAPTER

  3 The Response: Empathy

  CHAPTER

  4 Measurement

  CHAPTER

  5 Social Capital and Social Network Science Come of Age

  CHAPTER

  6 Changing Behavior and Creating the Epidemic

  CHAPTER

  7 Ten Key Steps Toward Higher-Value Empathic Healthcare

  Notes

  Index

  Acknowledgments

  IF AN EPIDEMIC of empathy is an idea whose time has come, it is because of the timeliness of the convergence of a series of ideas from various key colleagues. I hope this acknowledgment of their deep influence on this book will also serve as an abbreviated syllabus for readers who might want to go more deeply into some of the themes I have woven together. Individually and collectively, the work of these colleagues provides important insights into healthcare’s current state and where healthcare should go.

  For insight into the nature of strategy in a competitive healthcare marketplace, there is no better place to begin than with the work of Michael E. Porter, my colleague, coauthor, and friend from Harvard Business School. Over the last few decades, Michael has defined the meaning of strategy for business in general. His work on healthcare has helped clarify why an overarching strategic goal is important for every organization and why that goal should be to create value for patients, determine what multidisciplinary teams should look like, and decide what kind of information and incentives those teams need to drive improvement.

  For insight into the nature of the overall healthcare marketplace and the dynamics related to real competition (as well as efforts to frustrate competition), I turn to Leemore Dafny, a Kellogg School economist who is perhaps best known for her work on payer and provider consolidation, illustrating how it leads to weaker competition and higher prices. Like many clinicians, I have long been leery of thinking about healthcare as a marketplace, anticipating potentially perverse consequences if patients have to act like consumers and try to make trade-offs between quality and price. But no model of paying for healthcare is perfect, and all those models can have a range of adverse effects. Dafny and some of her economics colleagues inspire confidence that competition in a value-driven market has great potential to drive improvements in quality and efficiency, especially if providers embrace competition and learn to trust market forces. All stakeholders, including providers, will trust market forces more if providers are actively engaged market participants by, for example, being transparent with their quality data. Porter’s and Dafny’s work tell us what we have to do and why we have to do it.

  But how to get that work done? University of Chicago sociologist Ronald Burt’s book on social capital Brokerage and Closure: An Introduction to Social Capital is one that I have given to virtually every colleague working directly with me in managing healthcare delivery. It provides a clear and useful structure for learning (increasing variation in what is done by brokering ideas) and then converging on best practices (closure). Social capital is at least as important as financial capital to the ability of healthcare providers to compete in the era ahead, and corporate boards should give it the lion’s share of their attention.

  No one’s name appears more often in this book than that of Nicholas Christakis, the Yale social network scientist whom I met when he was launching his extraordinary work at Harvard. From Nicholas, I have learned how epidemics of values and emotions can spread from person to person to person and how to think of a group of people as an organism. If the work of Porter, Dafny, and Burt defines the big picture, Christakis characterizes the nature of the work to be done closer to the ground.

  Then there is the work that is not included in this book and is conspicuous by its absence. By that, I mean the nuts-and-bolts details of the kinds of programs and actions that can improve patients’ experiences. For those details, I refer readers to the work of my colleague Jim Merlino, former chief experience officer of Cleveland Clinic and author of the widely praised bestselling book Service Fanatics: How to Build Superior Patient Experience the Cleveland Clinic Way.

  I also have been deeply influenced by my colleagues at Press Ganey, most notably Deirdre Mylod, who was the first and the most persistent in saying that the reduction of suffering should be the performance goal to be measured and managed, and Christy Dempsey, our chief nursing officer, who defined compassionate connected care as th
e way to reduce suffering. Pat Ryan became the CEO of the company in 2012 and made these goals the focus of Press Ganey even before talking to me about joining.

  I allude throughout the book to the work and wisdom of many colleagues on the provider side. (I won’t single out any to minimize the risk of slighting others.) I do, however, want to thank Beverly Merz and Gregg Dipietro for their help in preparing this manuscript and Casey Ebro at McGraw-Hill for having the confidence that we could produce the book in a rather short time frame and the great editing and interpersonal skills that made that happen.

  Finally, the very idea of this book was that of my wife, Soheyla Gharib, MD. She suggested it one day over breakfast and did not complain when weekends and evenings were then lost to it. She’s a wonderful physician, and I often think of how I would not want to do anything in my medical practice that would disappoint her.

  She provides the norm. In this and many other ways, the influence of our relationship on my work is a demonstration of Nicholas Christakis’s ideas about social networks in action.

  Introduction

  IN EARLY 2014, my colleagues and I started publicly asking the question “Can we create an epidemic of empathy in healthcare?” We sometimes received puzzled looks in return. The Ebola epidemic was just getting under way, after all, and the word epidemic evoked panic, not comfort. Empathy was something that was respected and sought by everyone in healthcare, of course—especially patients—but most clinicians viewed empathy as a personal characteristic; either you had it or you didn’t.

  Nevertheless, within seconds of hearing the phrase “epidemic of empathy,” most people smile, nod, and understand, and many say that it is an idea whose time has come. An epidemic is an outbreak that pushes the prevalence of a condition to higher than normal levels; that push comes through contagion: transmission from person to person to person. In the classic use of the term, epidemic refers to the spread of infectious diseases. But other medical problems (e.g., diseases caused by cigarette smoking) also rise and decline in the same pattern as Ebola and other infections.

  The idea that values might spread in the same patterns as infectious diseases and that empathy might actually be contagious can be traced to the work of the social network scientist Nicholas Christakis. In a startling 2007 paper in the New England Journal of Medicine, he and his colleagues showed that obesity appears to spread through social ties.1 They demonstrated that if a friend of a friend of yours gains weight, you are more likely to gain weight even if you do not know that friend of a friend. A year later, they showed the same patterns with cigarette smoking and smoking cessation.2

  Christakis and his colleagues subsequently went on to show that emotions such as happiness and social values such as generosity to charities also spread with similar patterns within social networks. In short, social norms are influencing our behaviors all the time, often too subtly for us to notice. If being overweight seems socially acceptable, having those supersized French fries may seem a reasonable choice. If others around us are picking up their litter, we do, too.

  In healthcare, unfortunately, nonempathic care had become epidemic during the period leading up to this research by Christakis (who is, incidentally, a palliative care physician by training). The problem is not that medical schools can no longer find good human beings to train as physicians or that money has perverted the profession. The problem is progress itself.

  Over the last century, particularly the last 50 years, research has yielded marvelous advances. But one of the side effects has been that clinicians have increasingly narrow fields of expertise and that it takes more and more of them to deliver state-of-the-art care. The joke in medicine is that doctors today have a choice of learning more and more about less and less until they know everything about nothing—or they can know less and less about more and more until they know nothing about everything.

  Where there is humor, look for truth (a recommendation that comes from both George Bernard Shaw and Sigmund Freud). Neither option feels very good, but most young physicians choose the former, focusing on narrow issues so that they can master all the science even if it means eschewing the broader challenge of taking care of the person in whom the medical issues are playing out. Even within specialties, real expertise means becoming a subspecialist or a sub-subspecialist. At major cancer centers, for example, physicians tend to focus on one cancer and one cancer only: the lymphoma doctors do not see multiple myeloma patients, and the myeloma doctors do not see lymphoma patients.

  I have nothing against this trend toward sub-subspecialization. In fact, I routinely seek out such experts for my own patients and friends. In the vast majority of cases, seeing such an expert doesn’t make a difference in patient survival or in the degree of patient disability. However, every now and then it does make a difference. When physicians are seeing patients with a specific disease all day, every day, they gain experience, and with that experience comes the ability to sense deviations from the norm. Sometimes that experience enables them to decide that a patient’s course is not as it should be and that his or her symptoms warrant closer scrutiny. At other times, that experience enables them to live with uncertainty.

  For example, a woman I know was evaluated for hip pain, and the x-rays showed an unusual abnormality of her bones. Her x-rays didn’t fit any pattern that her physicians could recognize, and she was scheduled for surgery to remove the abnormal bone. The night before her operation, she was visited by a very experienced orthopedist who was a friend, not her actual doctor. She asked the orthopedist if she was doing the right thing by having the operation. He hesitated, not wanting to disrupt her care and play doctor when he was there only as her friend. But then he said, “I don’t think I would do it.”

  “Why not?” she said. “Do you know what I have?”

  “No,” he answered. “But I have seen almost everything bad there is related to hips, and this doesn’t look like any of the bad things I have seen.”

  She decided that if he wasn’t unnerved by what he saw on the x-ray, she could cancel her surgery and pursue a watch-and-wait strategy. It’s been 25 years since she made that decision. Her diagnosis is still a mystery. And she is still watching and waiting.

  At its best, the trend toward sub-subspecialization allows patients to see teams of clinicians (not just doctors alone) who are deeply experienced in meeting the needs of patients with a specific medical condition. One of my favorite examples is Mayo Clinic’s approach to breast cancer. Each patient has her own team assembled in accordance with her unique needs. It may include, in addition to oncology subspecialists, a primary care physician, a nutritionist, a physical therapist, and even a family therapist. Mayo Clinic knows that the patients who go there for breast cancer have needs beyond the treatment of their malignancy. They have other health issues, they have fears and anxiety, and they have worried families. The best teams in healthcare are organized holistically to meet most or all of the needs of patients with a specific condition, not just to help a sub-subspecialist do what he or she does best.

  But it doesn’t always work this way. In most of medicine, the trend toward specialization has come at the expense of that holistic approach to the patient. Because of medical progress and the resulting complexity of diagnosis and treatment, the role models in medicine have shifted from the compassionate generalist physicians—the Marcus Welbys—to the superspecialized experts who understand the most intricate mechanisms of disease and every now and then use those insights to pull off an amazing save. Bearing witness to a patient’s suffering is no longer the definition of a great physician; saving a patient who would otherwise have died has become the goal. Younger physicians have adopted as their role models the superspecialists who are going for the saves.

  Patients love stories about great saves, and so do hospital marketing teams and development officers. The problem is that healthcare cannot be only about going for great saves. Meeting patients’ needs well and reliably is going to require a new orientation for clinicia
ns, and that new orientation is going to require great teamwork, including new ways of working with colleagues and new ways of relating to patients.

  It’s also going to require clarity on the real goals of healthcare. As providers have felt the financial pressure to become more efficient, questions have naturally arisen: Efficient at what? What are we trying to achieve through healthcare? These questions have become increasingly pressing because if you do not have clarity on what you are trying to achieve, the pursuit of efficiency feels like a mildly perverse game in which you are trying to see what you can cut without creating too much of a ruckus.

  Healthcare reform came to Massachusetts a little earlier than it did to the rest of the country, and as it progressed, my colleagues at Partners HealthCare System started stewing about the ultimate goal of healthcare. We knew we were not in the immortality business, and we also knew that we could not restore many patients to full health. One of my colleagues, Cindy Bero, an information technology expert who had two parents with serious neurological diseases, captured the challenge best. She said, “We’re all going to die, and most of us are going to go downhill before we die. But we all want peace of mind that things are as good as they can be, given the cards that we have been dealt.”

  At the time, I joked that she had come up with a great slogan for our organization: “Peace of mind as you go downhill and die.” The others in the room laughed, but before the laughter died down, someone said what many were thinking: “That is what we are supposed to do. Give people peace of mind that things are as good as they can be, given the cards that they have been dealt.”

  That insight raised a series of troubling questions: If peace of mind is what we are supposed to produce, how well do we do it? Are we organized around that goal? Do we do things that systematically erode it?

  I understood that in my best moments as a doctor I took the time to look patients in the eye, recognize what worried them, and work to allay their fears Part of that work was to do what my medical training prepared me to do: enable them to live as long as possible and to be as functional as possible along the way.