An Epidemic of Empathy in Healthcare

by Thomas H Lee

  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. The reason I wrote this book is not to give a pep talk to my colleagues. I wrote it because I believe that healthcare is at a special moment. 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 fulmine, 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,3 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 2013.4 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.5 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. Another important tactic is to find the personnel who are most isolated from the organization’s culture and bring them in.

  The goal is to make well-respected, connected personnel who understand empathic care become the drivers of its spread—in effect, the Typhoid Marys of the empathy epidemic. The adoption of their practices can be accelerated by the use of financial and non-financial incentive systems that remind clinicians that every patient encounter is a high-stakes event not just for the patient but for the clinician as well. The University of Utah’s pioneering work in transparency—putting all patient comments about every physician online on its find-a-doctor website—has brilliantly shown the powerful effects of the knowledge that every patient has a chance to offer a comment online. As one orthopedist put it, it forces him to be at the top of his game for every single patient.

  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. As for the providers that do not embrace the competition, well, their prognosis is worrisome at best.

  Part of embracing healthcare’s competitive new environment should be creating an epidemic of empathy within healthcare organizations. Despite the added pressure, I haven’t met a clinician yet who thinks there is anything wrong with that. In fact, everyone in healthcare knows that we have a problem and that even patients whose care is technically excellent often do not feel cared for. The cure for this disease is to create an epidemic of our own, and I think we know how.

  CHAPTER

  1 The Problem

  THE IRONY IS difficult to ignore. We are living in a golden age of medicine, but it doesn’t feel that way.

  Over the last half century, medical progress has taken diseases that were the equivalent of death sentences and turned them into chronic conditions that are treatable and sometimes curable. The mortality rate from heart attacks has fallen from 40 percent to about 5 percent. Lymphomas and other cancers, along with infe
ctions such as hepatitis C and HIV, can be controlled or eradicated with medications. Tests for genetic markers in cancers are identifying treatment options that are giving hope and sometimes extending life for patients with advanced disease.

  Patients are thrilled by the potential of modern medicine to help them lead longer and healthier lives, but they worry that the benefits will be beyond their reach, that they will not be able to afford insurance that gives them access to excellent doctors and hospitals or these marvelous advances. They are anxious about whether their clinicians are actually talking to one another and coordinating their efforts and whether errors will result. They worry that no one is paying attention to the big picture of their personal goals and needs.

  These concerns are not the neuroses of a few malcontents. In a national survey of 800 recently hospitalized patients, more than 80 percent said that compassionate care is very important to successful medical treatment, but only 53 percent felt that the current healthcare system provides it.1 In this survey, fewer than 70 percent of patients gave their physicians high ratings (9 or 10 on a 10-point scale) on elements of compassionate care (Table 1.1). If their physicians had received similar grades in the courses required for them to reach medical school, they wouldn’t be doctors.

  Table 1.1 Percentage of Patients Rating Their Physicians’ Demonstration of Compassionate Care Elements Highly

  As disappointing as modern medicine may be for patients, the harsh reality is that it doesn’t feel so great for doctors, either, or for other clinicians delivering patient care. There is so much that can and should be done for patients today, the work of being a doctor or nurse often feels like an endless checklist. On the one hand, advanced electronic medical records can put everything that is happening to a physician’s patients in front of that physician. On the other hand, the amount of activity and knowledge that a physician ought to know can be overwhelming. When I click on the “in basket” in my electronic medical record system, I feel like a fire hose has been turned on and is blasting me against the wall.

  It is, of course, a good thing that we clinicians have access to comprehensive information on our patients and reminders of all the things we need to do. We are doing a better job as a result. The irony is that we felt like we were doing a better job back when there was less to know and less we could do.

  For example, just a few years ago, when there were no treatments for hepatitis, all clinicians could do was make the diagnosis and say something about the prognosis. Today there are complicated (and expensive) drug regimens to discuss and choices to be made, and most clinicians do not feel comfortable leading those conversations.

  In that simpler time, a doctor would walk into a patient’s room, and the patient and family would snap to attention, hanging on the doctor’s every word. Back then, the respect for doctors and other clinicians throughout society was palpable. It certainly still exists today, but what is also palpable and often more powerful than respect among patients is the fear that clinicians do not have their act together. There are so many clinicians involved in giving sophisticated care that patients get conflicting and confusing messages all the time and cannot help wondering if their clinicians are talking to one another or listening to patients.

  What Happened?

  How did we get to a point at which empathy—or the lack thereof—could be a problem in medicine? When so many doctors, nurses, and other personnel are working so hard in the care of patients, why do patients worry that no one is paying attention to them and their real concerns? When so many resources are being invested in it, who is to blame for the confusion that so often characterizes modern healthcare?

  If these problems had simple explanations, they might have simple solutions. If the people working in healthcare were incompetent, they could learn new skills. If their characters were flawed, admission criteria and hiring practices could be tightened. If financial incentives were rewarding the wrong behaviors, those incentives could be changed. But the fact is that our difficulties in delivering compassionate and coordinated care are not the result of bad guys who can be rounded up, retrained, or eliminated.

  The root cause of our problems is medical progress itself. With progress has come an increase in the number of clinicians required to deliver state-of-the-science medical care. How many different hospital personnel do patients having routine cardiac or orthopedic surgery come in contact with? It varies among institutions, but when anyone bothers to count, the figure is often 100 or more.

  These clinicians have narrower and narrower expertise and are focused on specific organs and diseases, often overlooking the issues of the patient as a whole. I got my first glimpse of this dynamic in the late 1980s. Pacemakers were just at the point of becoming small computers, able to do much more than nudge the heart electrically if it stopped beating for more than one second. The newer pacemakers could crank up the heart rate if the body needed more blood flow, such as when a patient was running up the stairs.

  As pacemakers became more complicated, a new subset of cardiologists emerged: pacemaker experts. I sent one of my primary care patients to our pacemaker expert, who implanted the device and saw her in the office every few months afterward to be sure it was operating correctly. The pacemaker worked flawlessly. The problem was that my patient liked the pacemaker expert too much.

  They were immigrants from the same country, and when they saw each other, they could speak their native tongue and talk about restaurants in the old country and where to get their favorite foods in their new one. The pacemaker expert was warm and personable and enjoyed the conversations until he realized that my patient was calling him about issues that really should have been my focus as her primary care physician. She would call him (instead of me) about headaches and urinary tract infections and nagging colds and coughs.

  At first, he would do his best to address those issues, but then he tried to explain to her how the system was supposed to work. It was a little confusing because I am both a cardiologist and a primary care physician, and so she assumed that he was, too. Finally, he put it very bluntly to her: “Lady, I only take care of the machine.”

  At that point she got it. But she didn’t feel good about it.

  At least my pacemaker expert and I knew each other, saw each other in the hallways, and wanted to work as a team. All too often, the “team” of clinicians who contribute to the care of patients is loosely organized and the team members have poor communication with one another. Frequently, they have not even met before and would not recognize each other if they passed in the hall. They are working hard but often are not working together.

  With so many clinicians involved in the care of patients, being a primary care physician feels more like being an air traffic controller than like being a heroic healer. Time to listen to patients, to bond with them, to experience the deep appreciation of a family after enduring a difficult passage together seems like a quaint notion from another era.

  To make matters worse, medicine has become a lonelier endeavor. When there was less to do, there was more time to sit and talk both with patients and with one’s colleagues. Don’t get me wrong; we were plenty busy in the old days and can all remember all-nighters of frantic activity until dawn and reinforcements arrived. But we were more likely to be working in groups, and there was time and opportunity for conversations about scientific advances relevant to our patients, for gossip relevant to our social lives, and for professional and personal norms to develop. Today hospitals feel more like airports, with everyone hurrying from one place to another with little time for informal interactions about patients and casual talk about the rest of life.

  In short, medicine has become a busier but simultaneously more isolated life for the people who deliver medical care. Outpatient physicians often do not go to the hospital anymore, because hospitalists take charge of care once patients need to be admitted. Hospitalists do not venture outside of hospitals, and so they do not see patients after discharge or the other clinicians who assume th
eir care. No one goes down to the basement to see the radiologists because the reports and images are available on the computer, and so the radiologists feel that their job is interpreting images rather than being part of a team taking care of patients.

  In this isolation and amid such frenzied activity, empathy for patients is supposed to be everyone’s job, but that often means it is no one’s job. That makes it unlikely for empathic care to become a social norm that spreads from clinician to clinician to clinician.

  Healthcare in Chaos

  The chaos that characterizes modern care was underscored for me when one of my primary care patients developed a mysterious and painful rash on his legs. He was in his late seventies and had a long list of medical problems that had been held in check for a long time, though but just barely. He had coronary artery disease and had had bypass surgery. He had a history of prostate cancer that had spread to his bones, but the cancer had been slowed to a standstill by the injection of medications every three months. He had several less threatening medical conditions, each of which was annoying but not much more. He was a tough guy—a former marine—and whatever problems he had, he was ready to tolerate them with minimal or no complaints.

  But one day he woke up with swollen joints and a painful rash on his legs, and he could barely get out of bed. His rash and his joint problems did not fit neatly into any of the common problems I saw in my medical practice, and he did not respond to anti-inflammatory agents such as ibuprofen or even narcotic-strength painkillers. We admitted him to Brigham and Women’s Hospital, the teaching hospital where I work, and he was seen by teams of experts in dermatology, infectious disease, oncology, cardiology, and rheumatology, among others.