An Epidemic of Empathy in Healthcare

Thomas H. Lee

212 pages, McGraw-Hill Education, 2016

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In An Epidemic of Empathy in Healthcare, Dr. Thomas H. Lee outlines a strategy for encouraging health care providers to respond more compassionately to their patients’ suffering. Lee, a practicing physician who has worked on healthcare performance improvement for more than three decades, is currently chief medical officer of Press Ganey, a healthcare analysis and consulting company. Previously, he served as network president for Partners HealthCare System in Massachusetts. Drawing on that experience and a range of other sources—from social network research to leading healthcare centers’ success stories—Lee argues that it’s easier than we might think to encourage people throughout the healthcare system to treat patients more empathetically.

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. 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.

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.

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.

I have nothing against this trend toward sub-subspecialization. At its best, it 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.

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.

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.

But another part of that work was what is now called emotional labor: make the effort to see things from their perspectives, understand their fears, and convey that to them. Beyond that, providers need to assure patients that they are going to work with all their colleagues to ensure that, well, things are as good as they can be, given the cards the patient has been dealt. That emotional labor is the core of empathy. Pretty much everyone—although not quite everyone—in healthcare knows how to do it. In fact, I think most clinicians enjoy it; otherwise, they probably would have sought another, less complicated type of work.

But turning on empathy for the patients one likes or identifies with is not enough. Empathic care should be the norm, not the exception. Also, some physicians, nurses, physical therapists, and other personnel are better and more reliable in delivering empathic care than others.

Can we use the insights from social network science to spread the values of these caregivers? Can we use our growing ability to capture and analyze data on what patients are going through to identify opportunities for improvement and then drive actual improvement? Can we help healthcare personnel be the way they want to think of themselves and be that way all the time?

I think the answers to these intertwined questions are all yes. We now have clarity on what we need to improve and why we need to improve it. The science and technology of measuring whether we are meeting patients’ emotional and physical needs has advanced tremendously. We are ready to apply insights into social capital, social networks, and the use of financial and other incentives to drive a real epidemic of empathy.

What would an epidemic of empathy look like? There would be a steady, relentless increase in the percentage of clinicians and other personnel who are clearly tuned in to what is really happening to patients and their families. Coordinated and empathic care would not seem to patients as miraculous and unpredictable as a lightning bolt of love (un colpo di fulminate, as the Italians put it). Instead, delivery of such care would become the norm; it would become increasingly fundamental to the way healthcare personnel saw themselves.

What would it take to get there? One critical step is to create the shared vision of what empathy means; that work has been in progress for several years and is accelerating. Organizations such as the Schwartz Center for Compassionate Healthcare and the Arnold P. Gold Foundation have been exploring and promoting the concept of compassionate care. The Cleveland Clinic empathy video, which has been viewed by millions around the world, is just one example of how healthcare organizations are finding new ways to remind their personnel of what their patients are going through.

To get there, we also need a new language that compels a response. Use of the word suffering by clinicians and leading medical journals was rare in the past because the term was considered overly emotional. In fact, I published an article in the New England Journal of Medicine about that term that was titled “The Word That Shall Not Be Spoken” in November 2013. But on February 18, 2015, just 16 months later, the New York Times ran a major story by Gina Kolata on its front page about how the reduction of suffering had become the overarching goal for many healthcare organizations around the country. Now, the word suffering is being invoked with increasing frequency by healthcare providers with the goal of reminding clinicians of the anxiety, confusion, and uncertainty that their patients endure.

There are other words that rarely came up in healthcare management discussions in the past that I am sure will become explicit foci in the years ahead, such as fear, trust, hope, peace of mind, exhaustion, helplessness, and loneliness. These emotions matter to patients, but they are also of great relevance to clinicians and the rest of the healthcare workforce. Organizations that can address such issues effectively will have a competitive business advantage, along with pride in what they are doing.

A third critical step is to understand what drives patients’ suffering. The pain and disability that result from their diseases are major factors, of course, but so is the avoidable suffering that results from the dysfunction of the delivery system: the delays, the uncertainty about what is going to happen next, the chaos that results when clinicians are not coordinating their efforts closely. Issues such as convenience, food, and parking are trivial to patients compared with these concerns.

A fourth step is to collect enough data so that meaningful analyses can be directed at potential units of improvement, including the individual physician. Patients are the only ones who can comment on whether they have peace of mind and whether their needs are being met. Ideally, these data would be akin to a vital sign (e.g., heart rate, blood pressure, and body temperature): information collected on every patient at every encounter. Approaching that ambitious goal means using electronic surveying technologies, collecting e-mail addresses on every possible patient, and sending surveys to seek information after every hospitalization or office visit.

To date, healthcare organizations have used carpet-bombing strategies, in which all personnel are urged to be more empathetic. With increasing ability to profile the performance of individual physicians, many organizations have been using the bad apple approach, focusing on encouraging improvement among the physicians who seem to be doing the worst. But to create an epidemic of empathy, organizations need to use other approaches as well. They need to find the personnel who are most reliable in their delivery of empathic care and enlist them in spreading whatever it is that they are doing right. They need to assemble a critical mass of empathic clinicians so that they are harder to ignore as anomalies.

This work is noble and consistent with the best professional values of medicine, but it’s also good business strategy. We are entering a new healthcare marketplace in which providers are going to be competing on the right things: meeting patients’ needs and doing so as efficiently as possible. That competition makes providers uncomfortable, but it is the best possible business context for driving progress toward a better and more affordable healthcare system. The providers that recognize that competition and plunge in are most likely to succeed and even thrive.

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