An Epidemic of Empathy in Healthcare

by Thomas H Lee

  The need to focus the attention of busy, hardworking clinicians on patients is a major reason why I changed my thinking about the use of the word suffering in the spring of 2013. I used to think that invoking suffering to describe what patients were experiencing was sensational and manipulative. I still think that is true, but I believe that this kind of manipulation is just what we need to overcome the distractions of modern life so that doctors and nurses can concentrate on the patients in front of them, an essential first step in the delivery of care with real empathy.

  I described this modest epiphany on the road to empathy in an article titled “The Word That Shall Not Be Spoken”11 that was published in 2013 in the New England Journal of Medicine, where I was then a part-time associate editor. Although I was a primary care physician and cardiologist at Brigham and Women’s Hospital, my main job at that time was as network president of Partners HealthCare System, the integrated delivery system started by the Brigham and Massachusetts General Hospital in 1994. In that role, I worked with my colleagues to improve the quality and efficiency of care in our hospitals and across the continuum of care. As we did that work, we would often discuss patients’ experiences in our delivery system, which stretched across eastern Massachusetts. We worked to reduce their confusion (and that of their clinicians) as they navigated our complex organizations.

  We knew that anxiety was inevitable for some patients because of the severity of their medical problems. But we also knew that there was unnecessary anxiety that had nothing to do with their diseases or treatments: the waiting time, the uncertainty about what was going to happen next, the worries that their clinicians were not quite in sync with one another. We worked to reduce that anxiety. It made good business sense, and it was obviously the right thing to do.

  As proud as I was (and remain) of that work, I was taken aback when I met Pat Ryan in March 2013. He had recently assumed the role of CEO of Press Ganey, and after talking to people inside the organization and its clients, he had decided that his company should do more than collect data. He thought the goal should be to reduce the suffering of patients: suffering from disease, suffering from treatment, and suffering from the dysfunction of the delivery system.

  My first reaction, which I said out loud at our breakfast, was that he was interested in the same things as my colleagues and I. My second reaction, which I kept to myself, was that the word suffering would take some getting used to. I didn’t doubt that my patients were suffering in a wide variety of ways, but like many clinicians, I had a hard time receiving feedback that our care was less than perfect.

  I was certainly uncomfortable with the notion that our coordination issues might actually be inflicting misery on patients. Nevertheless, it was hard to object to the use of the word suffering. Therefore, I just said what was true: I couldn’t remember the last time we had used the word suffering when discussing improvements in any organization, including my own.

  Later, when I discussed the conversation with physician colleagues, they also had a negative reaction to the word suffering even though we agreed that suffering was exactly what so many patients were experiencing. When we analyzed what made us uncomfortable, one conclusion was that the term was too vague.

  “I want to be told about things relevant to doctors, things that I personally can do something about,” one physician said. “Like anxiety. There is a diagnostic code for visits for anxiety. I can prescribe pills for anxiety. I can bill for visits for anxiety. But suffering is too amorphous for me to know what to do.” Aware of the irony, he said that too much talk about patients’ suffering might distract clinicians from doing what they could to relieve its specific causes.

  Another colleague raised a darker theme. “The problem with the word suffering is that it makes you feel bad,” he said. “I know my patients are suffering and that I do things differently for the patients who are closest to me. I don’t let them wait. I don’t let them be confused about what is happening. I make sure that their various specialists are talking to each other, and I make sure the patient knows when those conversations have occurred. But it’s a bottomless pit. If I tried to do everything I could to relieve every patient’s suffering, I’d never get home at night.”

  We all understood. He was bringing up a type of disparity in healthcare different from the ones we had previously discussed. There is plenty of information about gaps in quality of care received by the poor compared with the rich and differences in the outcomes of care among racial groups. His comment suggested that there might be another type of disparity hidden within the healthcare system: between the patients with whom clinicians readily empathize and everyone else.

  The implications were painful, even ugly. None of us see ourselves as people who would stand by while someone is suffering. None of us want to lead or be part of organizations that willfully ignore suffering, let alone inflict suffering by being oblivious to patients’ worries. But we know that for some patients we make the extra phone calls, have the extra meetings, and do whatever we can to reduce the chaos of the system. We base our perceptions of ourselves on how we take care of those patients, but we know we don’t do the same or believe we cannot do the same for everyone else.

  It was hard to avoid the conclusion that we clinicians avoid the word suffering even though we know it is real for our patients because if we admit that it exists, we have to take responsibility for it. The idea of taking responsibility for reducing suffering is overwhelming for us as individuals, and we already feel overwhelmed by our duties and obligations.

  I felt both better and worse when I learned that my colleagues and I were not the only ones who avoided that word. Most academic medical journals use the AMA Manual of Style, which says, “Avoid describing persons as victims or with other emotional terms that suggest helplessness (afflicted with, suffering from, stricken with, maimed).”12 In implementing this guideline, journals tend to allow programs to “suffer” in print for reasons such as lack of funding or leadership. But patients are not allowed to suffer from diseases or complications; copy editors are trained at many journals to change “The patient suffered from complications …” to “The patient experienced complications. …”

  I felt better because it was good to know that my colleagues and I were not callous outliers. I felt worse because I suspected that clinicians were avoiding the word suffering because it compels a response that we are not sure we can deliver. That made me wonder if using that word to describe what patients experience might be the first step toward more empathic care.

  It was around that time that I learned that the word patient comes from the Latin word patiens, which is derived from the verb patior, which means “I am suffering.” Suddenly the term patient-centered care took on a new meaning. It was about the detection and reduction of suffering, and those acts put empathy at the core of what medicine is about. I was optimistic that my colleagues could and would rise to the challenge once it was fully understood.

  How Empathy Can Be Eroded

  Some researchers have speculated that empathy may be similar to language in that it is readily acquired in infancy and can continue to grow throughout life. However, like language, empathy can wither if it isn’t practiced regularly or if it is not prized. (Think of all the immigrant children who have been encouraged to shed their native tongues so that they can be accepted more rapidly into their adopted country.)

  A few sociologists have argued that empathy implies a sense that we’re all in this together. They maintain that empathy was not valued in the climate of the 1970s and 1980s: the Me Decade and the Greed Is Good Decade. In that period, individualism and personal accomplishment at almost any price reigned supreme.

  Coincidentally or otherwise, those two decades were also the beginning of an era of incredible technological advances in medicine. Cardiology expanded exponentially as cardiac catheterization and open-heart surgery were becoming commonplace; chemotherapy was transforming oncology; and computed tomography (CT), positron emission tomography
(PET), and MRI made radiology a technologically thrilling field. Bench scientists were revealing the basic mechanisms of atherosclerosis, inflammation, and devastating hereditary conditions such as familial hypercholesterolemia, cystic fibrosis, and Huntington’s disease. Rapid-fire advances in biochemistry and molecular biology were enabling rational drug design and the debut of blockbuster drugs.

  In this climate, medical school and training were not led by—or for—the gentle-hearted. Medicine was growing increasingly difficult and competitive. One colleague told me how one of his professors used to stop him in the hallway and say, “How much did you sleep last night?” Regardless of what he answered, the professor’s response was “That’s too much.”

  During clinical rounds, the emphasis was on acquiring diagnostic and procedural skills, not a compassionate bedside manner. Medical students tended to focus on getting into the best residency program for their specialty and ultimately becoming affiliated with a prestigious medical organization. Under extreme pressure, constantly sleep-deprived, and occasionally feeling abused by senior staff, physicians in training tended to put most of their energy into staying on their personal courses.

  Several studies have shown that empathy declines during medical training. One cited reason is that trainees distance themselves from patients to protect themselves from psychological damage. Another is that the demands of training don’t leave them with the time or emotional energy to empathize with patients.

  In one study, internal medicine residents at the University of Pennsylvania completed the Interpersonal Reactivity Index (IRI) and Profile of Mood States (POMS) at six points during their residency training. The former evaluated empathy; the latter, resilience. The researchers found that the residents were in relatively good shape at the beginning of the program. In fact, their scores indicated that they were more empathic, vigorous, and emotionally stable than the general population of graduate students. However, their mood scores plummeted rapidly, reaching a nadir midway through their internship. Although their depression and anger abated over time, returning to baseline by the end of their residencies, their vigor and empathy remained low.13

  These are generalizations, of course, and trainees vary in their experiences and responses. Much depends on the role models around them. During my training, I had a fabulous faculty preceptor, Phyllis Jen, who was the first physician I had met who contacted every patient with laboratory results regardless of whether they were normal or abnormal. Today this follow-up is an expected practice, but in the early 1980s it was unusual. Even today some physicians do not communicate with patients about normal results.

  But Phyllis saw it differently. “I figure that if I stick a needle into someone’s arm and suck blood out of them, I kind of owe it to them to let them know the results,” she said with a shrug. “I know I would want that.”

  She was putting herself in the patients’ place, understanding what they needed, and giving it to them. Phyllis did not make the other physicians and trainees in her practice communicate with patients after every lab test, but she set an example in this and many other ways. By doing so, she set standards that trainees like myself did not want to fail to meet. (Phyllis Jen died in 2009, and the primary care center where I practice is named in her honor.)

  If doctors are low on empathy at the beginning of their careers, the current medical climate doesn’t reliably encourage it to bloom again. In a 2005 paper, Sharyn Potter and John McKinlay discussed the degradation of the physician-patient relationship during the twentieth century.14 At the beginning of that period, it was a paternalistic relationship in which doctors’ superior knowledge gave them all the power. Patients didn’t seem to mind the inequality; they had a high level of trust in their doctors.

  In that era, the physician and the patient were often members of the same community (at least in communities that were sufficiently well-to-do to have physicians living in them). The relationships between doctors and patients had both longitude and latitude. Physicians had known many of their adult patients since infancy and might have even delivered them. They also knew their families and friends. They ran into them at community events and were aware of their successes and reversals.

  If empathy implies appreciating where someone is coming from, midcentury physicians didn’t have to work hard to gain it. They knew in advance how much urging patients would need to stop smoking or lose weight, how much discomfort they were willing to tolerate, whether they were likely to comply with a complicated regimen, and exactly who their caretakers would be if they became disabled.

  In many ways, the relationship Gloria has with Dr. Smith is a throwback to the last century. Dr. Smith has been in practice at a major Boston teaching hospital for decades, since the very beginning of her career. Gloria has been her patient for 20 years, and she’s not unique in that respect. Dr. Smith values her longitudinal relationships with her patients. She knows not only their medical histories but also their life stories: what’s going on with their careers and how their kids are doing. She visits her patients in the hospital even when she’s not the admitting physician and makes house calls to dying patients.

  But a variety of forces make Dr. Smith feel like she is swimming against the tide as she tries to preserve empathic longitudinal relationships. Medical progress means many more clinicians are involved in the care even of patients with routine medical problems. It often seems that physicians have to give so much energy to keeping their colleagues up to date through the electronic medical record that there is little time for actually looking at or listening to the patient.

  Today few physicians can expect to have the kind of longitudinal relationship with their patients that Dr. Smith has with Gloria. Only a third of physicians deliver primary care. The specialties of internal medicine, family medicine, pediatrics, and geriatrics have shrunk as their relative incomes have declined. An increasing number of physicians are in households in which both adults work in demanding jobs, and so neither partner can work endless hours. After all, someone has to get home to help the children with their homework or walk the dog. That means patients are “cross-covered” and often seen by someone who does not know them well in their hour of need.

  Recognizing the Lack of Empathy

  An important step in stemming the erosion of empathy and cultivating its reemergence is to recognize when it has been lost. Compassion fatigue is a term coined in the late 1980s as a synonym for secondary traumatic stress syndrome. It describes the effects of taking care of people who are enduring traumatic events. Caregivers with compassion fatigue may feel angry or helpless and often turn off their own emotions as a defense mechanism. Compassion fatigue is particularly prevalent in specialists who treat the groups of patients in the greatest distress: psychiatrists, emergency physicians, and palliative care specialists.

  A painful irony of compassion fatigue is that the people who have the most empathy are the most likely to lose it. Charles Figley, a pioneer in the study of compassion fatigue, has shown that exposure to patients’ pain and suffering elicits empathy from doctors and nurses but that sustaining empathy over time taxes the emotional energy of caregivers. The risk of compassion fatigue increases with continued exposure to suffering, especially if it is compounded by other job stresses, such as increases in patient load or personal issues.

  Compassion fatigue can be measured with a variety of tools, including the widely used ProQOL (Professional Quality of Life) questionnaire. For example, in one study of emergency doctors and nurses in the United Kingdom’s National Health Service, the ProQOL tool was used to identify emergency medicine doctors and nurses who were “compassion satisfied” or “compassion fatigued.” Clinicians in the fatigued group were more likely to report that they were often irritable when dealing with patients or colleagues. They also felt that they weren’t able to deliver as high a standard of care as they once had. More than half said they wanted to retire early.

  When interviewed, clinicians with compassion fatigue described a sense
of emotional and physical depletion from having to work longer shifts during high-volume periods and returning to the regular schedule with no break after having been on call. Many also felt unsupported by others on their team.

  For example, one clinician said, “The elements that I have control over are outweighed by the magnitude of the effects of other people’s decisions that are impacting negatively on the service … when the combination of that lack of control and personal exhaustion comes in, you start getting demoralized … you can’t be that calm relaxed person you want to be for your staff and for your patients.”

  In contrast, the “compassion satisfied” group reported having developed strategies to deal with the intensity of their work, such as exercising and taking a short break when they found their patience fraying. They felt good about their teammates, describing the support of colleagues and team spirit as important in preventing burnout. They also tended to have greater variety in their jobs and the opportunity to shift from clinical care to administrative work, which functioned as a pressure-release valve.

  One of the salient differences between the two groups was in the empathy they felt toward their patients. In one question, the interviewers asked them to describe how they reacted to people who sought emergency care for nonurgent problems. Those in the satisfied group seemed to share a philosophy that all were entitled to care regardless of the severity of their illness, whereas those in the fatigued group were more likely to view such patients as less worthy of compassion—especially if they were demanding or complaining—because they didn’t belong in an emergency facility.15