An Epidemic of Empathy in Healthcare

by Thomas H Lee

  All too often, the cumulative effect from the patient’s perspective is that too many clinicians are involved, each with a narrow focus and none who are looking at the big picture. In short, no doctor has all the information—or full accountability—for the patient’s care, and neither the patients nor the doctors feel very good about this.

  Making Sense of the Confusion

  Many patients and families simply endure the confusion, but others cannot. An example of the latter is Suzanne House, whose 42-year-old husband, Jerry, died in 2008 at my hospital. He had been diagnosed with chronic lymphocytic leukemia five years earlier. Jerry House received six rounds of chemotherapy and was declared to be in remission just three months after he had been diagnosed with cancer.

  That remission lasted for two and a half years. The cancer’s return was diagnosed in May 2006, on the Houses’ ninth wedding anniversary. Suzanne was six months pregnant with their third son. Over the next two years, Jerry endured a grueling series of chemotherapy treatments in preparation for a bone marrow transplant—his best chance for a cure. But in the summer of 2008, after a hospital stay of 43 days, he died from a combination of his cancer and infections that had attacked both of his lungs.

  The last sentence is, of course, a dispassionate distillation of a prolonged nightmarish experience that remains vivid to Suzanne House even today. She still remembers new interns and residents speaking in voices that were “incredibly loud, asking mundane questions such as ‘So when did you first think you may have leukemia, Mr. House?’” She recalls that her husband would look at her and shake his head in disbelief. After all, that information was in his voluminous medical record. Her sense was that every physician was starting from scratch. Their experience was, as she describes it, “All day long, different shifts, different residents, and loud, strange questions.”

  Everyone—and there were many types of experts involved—was trying his or her hardest to save Jerry House. Pulmonary, oncology, and infectious disease physicians came in and out several times a day, accompanied by residents and fellows, nurse practitioners, and social workers. Suzanne, an attorney, and Jerry’s relatives peppered the clinicians with questions and hung on every word of the responses. Some physicians thought the problem was white blood cells from his cancer. Others thought it was a fungal infection. One said he was receiving the right medications to turn things around. Another said he might have only two weeks to live.

  In retrospect, all those clinicians were mostly correct and were not really contradicting one another. There almost surely was cancer and infection in his lungs. He was receiving the “right” treatments. And their chances of saving Jerry House were minuscule. To the family, however, the various messages were confusing and sometimes contradictory.

  Jerry’s primary nurse understood Suzanne’s distress and said, “We need to call a family meeting.” Everyone involved in the case—well over a dozen physicians, nurses, and a social worker—was assembled in one room. Suzanne opened by saying, “Our family didn’t need this meeting. You did. I need all of you on the same page. You are telling us different things, and it is scaring us.”

  All the constituencies in turn said what they thought was going on and what Jerry’s likely prognosis was. There was still no absolute proof, but there was more consensus among them than had been apparent in the past. The House family took careful notes, asked questions, and shortly thereafter was introduced to the palliative care service.

  Suzanne recalls now that she did not even know what palliative care meant at the time. It involves a consultation team that focuses on comfort for patients who are nearing the end of life. The team members are experts in relieving pain, shortness of breath, fear, and anxiety. Her husband died peacefully early in the morning of August 1, 2008, with only Suzanne in the room. It was the day he had been scheduled to receive a bone marrow transplant.

  It’s hard to say there is anything like a happy ending to a story like this, but here is how she described what happened next in an e-mail to me: “I stand up, kiss his forehead, pull up his sheet to the top of his chest and then say a prayer. I then buzz for the nurse. I walk and meet the aide at the door. I tell her he is gone. She looks over and says, ‘No.’ I say, ‘Yes.’ Then she hugs me and takes me down to the family room.

  “The rest of the story is remarkable in that I was able to meet, talk with, and hug his oncologist. He told me he loved me. I got to play Monday morning quarterback with his nurse practitioner. All of Jerry’s infusion nurses and staff came over to see me. We hugged and cried. It was an amazing morning. I was able to have closure that not many people get.”

  Suzanne became moderately famous within the healthcare system where I work as “the woman who called a family meeting because the doctors needed it.” She spoke at one of our meetings, focusing on improving care of patients at the end of life, which is where we first met. At lunch after her talk, one of our neurosurgeons said to me that he completely understood how all of our colleagues had been doing their best but had created panic among the House family.

  “To tell you the truth, I am embarrassed by what she described,” he said. “The question is whether we are just going to leave this meeting and go back to the hospital and do things the same way.”

  That comment by that neurosurgeon brings us to one of the most puzzling and daunting aspects of the problem. With so many good people working so hard, why has healthcare been so resistant to change? Why haven’t healthcare providers reorganized themselves to make disorganized and impersonal care a thing of the past?

  The Problem with Healthcare Is People Like Me

  I opened an article that I wrote in 2010 for the Harvard Business Review with the line “The problem with healthcare is people like me.” I went on to describe how “people like me” include “doctors (mostly men) in our fifties and beyond, who learned medicine when it was more art and less finance. We were taught to go to the hospital before dawn, stay until our patients were stable, focus on the needs of each patient before us, and not worry about costs. We were taught to review every test result with our own eyes—to depend on no one. We were taught that the only way to ensure quality was to adopt high personal standards for ourselves and meet them.

  “Now we are in charge. And that’s a problem, because healthcare today needs a fundamentally different approach—and a new breed of leaders.”5

  My comments in that article were focused on physicians, but they pertain to other types of clinicians. We are demanding change from good, hardworking people who know that they are good and hardworking. These themes also affect the nonclinical personnel who may not deliver care themselves but influence patients’ experiences: the front desk personnel, the people who address financial issues, the staff members who help patients get from one place to another. Healthcare today is a team sport; the good intentions and hard work of individuals cannot guarantee quality or efficiency. Healthcare today is also fast-paced and relentless. It is hard for anyone to be at his or her best all the time for every patient.

  This challenge is exacerbated by a crisis in morale among many in healthcare, especially clinicians. A generation ago, being a doctor or nurse meant having a secure job and the respect of the community, but today neither income nor status is guaranteed. Much of the discussion about the angst among healthcare providers focuses on financial issues, but even if there were no financial challenges, there would still be a need for change and there would still be anxiety among healthcare providers about what that change implies.

  The term that is used with increasing frequency to describe this crisis in morale is burnout. Burnout is characterized by “a low sense of personal accomplishment, emotional exhaustion, cynicism and depersonalization.”6 As one leading researcher noted, burnout starts when “energy turns into exhaustion, involvement turns into cynicism, and efficacy turns into ineffectiveness.”7 The net effect: many clinicians and others in healthcare feel weary from the struggle to get through the day, and they despair about their ability to ma
ke a difference in the problems of individual patients, let alone the overall challenges facing healthcare.

  The notion that clinicians could say they are “burned out” may seem startling at first to people in other fields. After all, clinicians do some of the most respected work in society, are well compensated, and are the recipients of positive feedback when they do the most routine tasks. (Patients commonly begin their visits with “Thank you for seeing me.”) But data reliably show that 25 to 60 percent of physicians, nurses, and other medical personnel report burnout.

  In a 2015 study, 5,404 healthcare personnel were asked the question: “Overall, based on your definition of burnout, how would you rate your level of burnout?” They were instructed to answer by using the following scale:

  More than 38 percent of the respondents answered 3, 4, or 5 and were classified as having burnout. The burnout rates were highest in those with the most clinical involvement with patients, but even clerks had a 35 percent burnout rate.8

  Burnout is believed to result from a range of growing internal and external pressures. There is so much more to do and to worry about. There are so many more people with whom to try to coordinate one’s work. There is so much more pressure to do everything quickly and efficiently.

  A generation ago, doctors and nurses rarely were evaluated. Today, they receive constant feedback that their efforts are insufficient. Whatever aggravations characterize work as a clinician today, the future seems likely to hold even more. The loss of certainty about their professional lives is sinking in, and clinicians are going through something akin to the stages of grief. As Toby Cosgrove, the CEO of Cleveland Clinic, and I wrote in an article in 2014,9 few are still in the denial phase, and many have moved to the next phase: anger.

  As Cosgrove and I wrote, there is really only one solution to this angst among clinicians. We have to focus on what everyone agrees trumps all of our concerns as individuals: what is happening to patients. We have to persuade our colleagues to focus on the suffering of our patients with the well-founded hope and expectation that our colleagues will rise to the challenge of relieving it.

  CHAPTER

  2 The Imperative

  CREATING AN EPIDEMIC of empathy is not an act of charity. It is a strategic business imperative. For many healthcare organizations, pursuing this goal is actually a stay-in-business decision because we are entering an era in which the healthcare marketplace is driven by competition based on value. In this marketplace, the healthcare providers who can organize their personnel to deliver high-quality care with efficiency and empathy will be the ones that thrive. In contrast, the providers who are unable to move their personnel into new models of working together to meet patients’ needs may watch their patient-service revenue erode as competitors take their patients away.

  This new competitive environment represents a clear break from a past in which care was organized around maximizing the volume of healthcare services. This historical orientation was not a reflection of moral weakness; the assumption was that those services were almost always beneficial for patients and that the more that was done, the more patients would benefit. However, that orientation has ceased to be viable in a world where resources are limited and where a healthcare system with complex capabilities frequently does not benefit patients and sometimes causes harm.

  Why We Resist Change

  If there are still some healthcare leaders who do not believe that fundamental change is under way, their numbers are dwindling with each passing year. The skepticism that remains stems from decades of hearing that a revolution is about to occur in healthcare yet realizing a few years later that not much has changed. Healthcare continues to be organized around what physicians do, and their activities still continue to be rewarded through the fee-for-service systems.

  Is there any reason to believe anything will be different this time? Why should physicians disrupt the lives of their colleagues by asking them to reorganize their care? They remember the 1990s, when similar speculations that the healthcare system was about to change were commonly made. They thus hesitate to anger colleagues by asking them to work differently or reduce their incomes by performing fewer services.

  They say that terms such as value and patient-centered may sound good but are only abstractions that are difficult to apply when it comes to actual healthcare delivery. They express doubts that patients can make the best decisions about their own care because they do not have physicians’ and nurses’ intimate knowledge of medicine. They look skeptically at individual measures of quality and highlight potential flaws. (“What about Dr. Adams? He scores high in patient satisfaction, but we all know he is completely out of date.”)

  In the absence of measurement systems that capture what they consider quality, they fall back on something traditional: trust that doctors know what they are doing. They believe that what healthcare providers do is predominantly good, and they know that the services they provide are valued by patients and their families. Why else would hospitals and physician offices be so full? They think of all the exceptions that undermine any existing quality measure and argue that the most important step in preserving quality is to protect the autonomy of physicians. After all, doctors are the ones who understand medicine, and no one should make it difficult for them to do whatever they consider the best thing for any specific patient.

  There is one more nuance to their resistance to the possibility that change is afoot. Money currently flows on the basis of the volume of services provided rather than through alternative approaches that reward providers on the basis of whether they have met patients’ needs. In any large healthcare organization, the livelihoods of thousands of people depend on steady cash flow that stops the instant there is a decline in services reimbursed by fee-for-service contracts. That cash flow is similarly diminished by every service that is not directly compensated, such as an extra phone call to make sure that a patient is not unduly frightened before or after surgery. Despite the high volume of care delivered, the financial margins of most healthcare organizations are so thin that any change threatens major disruption. The loss of a million dollars in revenue means that 10 people will lose their jobs, maybe more. In this context, it seems irresponsible to rock the boat.

  Why This Time Is Different

  The basic dynamics of the healthcare marketplace are changing in irreversible ways. In the old days, patients could go almost anywhere for their care with minimal if any impact on their personal costs. Not surprisingly, their choice of providers was based on some combination of reputation and convenience. If providers had enough patients, they became indispensable to health insurance plans and to employers who did not want to anger patients who were loyal to their healthcare providers. Those providers could then negotiate contracts that covered all their costs, including costs for uninsured patients and patients covered by Medicare or Medicaid who brought in less revenue than the cost of their care.

  Today, however, some of the decisions that will determine the viability of healthcare organizations do not occur at the contract table where agreements with insurance companies are reached. Nor do they occur at conference tables of employers who are deciding which insurance products to offer. The decisions are being made at kitchen tables in the homes of people who are struggling to stretch their budgets to meet their expenses. Those budgets are based on incomes that have been essentially flat or even declining. Healthcare costs are rising less steeply than they did in the past, but they still seem to be rising faster than the incomes of most households. In 2013, healthcare spending increased 3.6 percent1 whereas the median household income increased only 0.6 percent,2 which means net buying power went down.

  So what’s new? Those families now have another option besides cutting other expenses or going deeper into debt: they can choose a less expensive health plan. Many employers offered only one, two, or three options in the past, and the distinctions were often subtle at best. However, the trend is toward employers offering more options, including lower-cos
t plans in which employees decide whether they want to trade access to all providers for lower costs. In short, more and more people are factoring cost into the way they choose providers. They are choosing insurance products that they can afford and then searching for the best care available within their options.

  Another important trend is that larger employers and health plans are steering patients toward institutions with which they have “bundled payment” contracts in which the providers deliver episodes of care for a set fee. For example, employers such as Walmart, Lowe’s, and General Electric are sending employees who need major heart surgery to Cleveland Clinic, Geisinger Health System, and other providers that have agreed to a fixed price and also have excellent quality records.

  As a result, value is starting to influence where patients go for primary care, radiology tests, colonoscopies, cardiac surgeries, and other procedures. Although relatively few patients are changing where they get their care, the loss of only a small percentage of patients is enough to destabilize a hospital or physician group. Providers now realize that they need to hold on to their patients because if they lose their market share, they are at risk of going out of business no matter how well their contracts reimburse them.

  Competing on Value

  In one important marketplace, Florida, competition is leading to better and more efficient care. Florida’s warm winters attract elderly retirees who are tired of shoveling snow and braving freezing rain. The 12 U.S. counties with the highest percentage of citizens over age 65 are in Florida. Virtually all these patients are covered by Medicare, which does not pay hospitals or physicians as much as most commercial insurance plans do.