Compassionomics

  Dr. Lauge Sokol-Hessner, a professor at Harvard Medical School and the associate director of inpatient quality at Beth Israel Deaconess Medical Center in Boston, and his colleagues are studying just this problem. They define an emotional harm as harm to a patient’s dignity caused by a failure to demonstrate adequate respect for the patient as a person.

  Further, they define dignity as the intrinsic, unconditional value of all human beings that makes them worthy of respect. They see respect as the sum of the actions we take to protect, preserve, and enhance the dignity of our patients.243 But most importantly, they believe that emotional harms are just as important as physical harms to patients and should be treated accordingly.

  A few pages back, you were introduced to health care systems’ gargantuan efforts to track medical errors, bad outcomes, and the process of care measures that may lead to physical harms. Quality reporting is a multi-billion-dollar industry in health care today. In fact, a research study examining just four specialties found that U.S. physician practices spend more than $15.4 billion annually to track, analyze and report quality measures.244

  There are dozens of consulting companies—Healthgrades, Advisory Board, Huron Consulting Group, and so many more—all dedicated to helping hospitals improve their reporting on metrics that CMS wants data on. It makes sense, as the government is the largest health care payer in the U.S.

  But there’s something missing: Despite all of these efforts to reduce physical harm (and all of the spending on these efforts), emotional harms are not tracked at all. None of the vignettes about emotional harms you just read would show up on a health care system’s quality dashboard. They are not systematically identified or addressed in hospital quality improvement programs.

  That’s why the unconventional—and probably long overdue—approach by Sokol-Hessner and his colleagues is so welcome.242, 243 At Beth Israel Deaconess Medical Center, they are not only capturing and tracking emotional harms, but they’ve reconfigured their safety reporting tool to include a category for emotional harms.

  Emotional harms are a big, big problem in health care today. Research shows that when asked about the impact of adverse events in health care, patients emphasize emotional harms more than physical harms.243, 245, 246, 247 And emotional harms may be more common than physical harms; some research indicates three times more common.246 Plus, they may “hurt” more than physical harms and can have lasting effects.

  Think back for a moment to the bus crash study shared at the beginning of Chapter 1, the one about what the survivors remembered most five years after their harrowing experience.18 What they said was that in addition to the physical pain they experienced, what was seared in their brain—five years after the accident—was a lack of compassion from caregivers at the hospital. They suffered an emotional harm that day, and they cannot forget it, even now.

  Let’s consider the six vignettes at the beginning of this section one more time. Five years from now, if you asked the patients or family in each of those scenarios what they remembered most of their experience, guess what they would most likely remember? They likely would not remember the specifics of the technical care. They might have very little recollection of those details. But they would definitely remember exactly how the caregivers made them feel. They would remember the indignity. Emotional wounds can run deep. And, unfortunately, they are sometimes never forgotten.

  Maria’s Story

  Here is a true story of emotional harm, one that persists even today:

  Maria thought she was dying. She felt like she was coming apart at the seams. She had trouble walking and trouble speaking. Her body was stiff. Her face was changing. Sometimes she would just have a blank stare, expressionless. Emotionally, she was withdrawing. She wondered if these were just the effects of aging, but she was only 65 years old.

  When her primary care doctor put her arm around Maria and said the words, “I think you have Parkinson’s disease,” Maria’s whole world changed in an instant. She was terrified. What did that mean? What would happen to her?

  But, thankfully, things started to get better that day as Maria’s primary care doctor also started her on a low dose of medication to treat Parkinson’s disease. Almost immediately, Maria’s movement got better. Her speech improved.

  She was more herself, engaged, and able to connect with people. Her smile came back and her family was thankful. They had their “Nonna” back.

  But then Maria’s primary care doctor referred her to a specialist, a neurologist, to confirm the diagnosis was correct. On the day Maria and Peter, her husband of more than forty years, went to see the neurologist, they were quite anxious, but also hopeful that a good quality of life was possible. They were encouraged by the progress Maria had made on medications. But in that neurologist’s office, everything changed.

  The neurologist confirmed for Maria that it was Parkinson’s disease and that she was started on the right medication already. But then, Maria asked him, “What can I expect with this diagnosis? What will happen over time?” She wanted to know what would happen to her, long term. What would the rest of her life look like?

  The neurologist could have told her that although there is no cure for Parkinson’s disease, there are effective treatments to slow the progression, and that a good quality of life is still possible for quite some time. He could have said, “Although there is no way to make this disease go away, Maria, we can treat it, and we will go through this together.”

  Instead, this is what he told her she had to look forward to. These are the actual words he used:

  “There are two common patterns ‘in the end.’ The first is that, because you will have trouble walking, you will fall down and break your hip. That usually triggers a downward spiral of progressive weakness that you won’t be able to get out of that will lead to your death. The second is that you will have trouble swallowing and you will choke on (aspirate) your food and you will die from that.”

  Not only was there no compassion, there was no sensitivity—actually no humanity—in the words he spoke. Maria crumbled. She was shaking, unable to speak. She couldn’t stop envisioning a horrible end to her life. Maria doesn’t remember anything about the appointment beyond that point. She was unable to hear anything further that the neurologist said.

  But Peter remembers every word. Every word. To this day when he thinks of that neurologist, he replays those words in his head and remembers how that doctor deeply wounded his wife, the love of his life. It is an emotional wound that to this day Maria keeps reliving. It cannot be undone. How could someone be so callous?

  As soon as the appointment was over, Maria actually regressed physically. The medicines stopped working. Parkinson’s disease causes rigidity of the body, an inability to move. Maria was frozen. The emotional harm triggered a physical harm. In the days and weeks that followed the neurologist visit, Maria fell into a deep depression which just exacerbated her physical symptoms.

  Over time, after a rocky course, Maria started to respond to treatment again, but the experience still haunts her today. Anytime she is reminded of it, she breaks down in tears. All the feelings she felt back in that neurologist’s office come rushing back all over again. And every time this happens, she slides backward with her physical symptoms as well. She crumbles again.

  Everyone who knows her husband Peter would say, without question, that he is an extremely gentle man. But to this day, any time he thinks back to the words that the neurologist said, and how those words cut his precious wife to the core and stole a piece of her spirit, his jaw clenches, and so do his fists. He fights back tears. This typically gentle man shakes with anger at the memory—even now, many years later. Don’t tell Peter that emotional harms aren’t real.

  If you are a health care worker of any kind, there are three key take-home messages in this regrettable story. First, always remember that being a patient means being vulnerable, and often extremely vulnerable. Second, compassion protects the vulnerable. Failing to practice compas
sion means that emotional harms are more likely to occur.

  Emotional harms are usually preventable, and when we fail to prevent them we should consider that unacceptable. When a physician graduates from medical school and takes the oath that we often translate as “Do no harm,” that includes the kind of harm that is invisible also…the emotional wounds.

  And third, know this: every word out of your mouth matters.

  Emotional Harms Can Be Expensive for Health Care Systems

  What about when health care providers don’t take their responsibility to prevent emotional harms seriously? In one especially egregious case in the news recently, a jury ordered two physicians to pay a patient $500,000 after they made disparaging comments about him while he was under anesthesia.248

  Here’s what happened: A patient was preparing to undergo a colonoscopy. He knew that he got very groggy with sedative drugs, and he wanted to accurately capture any post-procedure instructions that his physician would give him. So right before the procedure started, he pressed “record” on his smartphone.

  Imagine his surprise when he pressed play on the way home from the hospital and realized that he captured the chatter of his doctors during the whole procedure. As soon as he was asleep, the insults began. “After five minutes of talking to you in pre-op, I wanted to punch you in the face and ‘man you up’ a little bit,” the anesthesiologist said to her colleagues.

  But it didn’t stop there. When the medical assistant pointed out a rash on the man’s penis, the anesthesiologist joked that the medical assistant should not touch it because he might get “some syphilis on your arm or something,” and then added, “It’s probably tuberculosis in the penis.” It went on and on and on. The doctors even talked about how to avoid the patient after the procedure and asked an assistant to lie to him!248

  As a result, the jury awarded the man $100,000 for defamation, $200,000 in punitive damages, and another $200,000 for medical malpractice.248 Later in Chapter 7, we will do a deep dive on the evidence for the effects of compassion on health care costs but, for now, this story is an example of how an extraordinary lack of compassion for a patient leading to an emotional harm can also be extraordinarily expensive.

  Rethinking Quality and Safety Measures

  As you’ve seen, Sokol-Hessner and his colleagues at Beth Israel Deaconess are convinced not only that emotional harms are real but also that we need to treat them very seriously, just like all other avoidable harms that are tracked in health care systems. We should track them just like other adverse events.242

  Just as hospital-acquired infections, surgical complications, and the most serious adverse events are preventable (sometimes called “never events” in hospitals), health systems also need to have a method to report, track, and investigate cases of emotional harm. Of course, if we can’t measure it, we can’t improve it. Sokol-Hessner reminds us that dignity and respect for patients are, in fact, legitimate quality measures. Period.

  Perhaps most important to remember, emotional harms often can be prevented through compassion and maintaining dignity and respect for patients. Therefore, unlike many adverse events that are tracked in health systems, the occurrence of which may be mostly (or in some cases totally) unavoidable, emotional harms are almost always preventable.

  Now, following the lead of Dr. Sokol-Hessner and colleagues, it is health care’s responsibility to prevent them. Research from the University of California Berkeley found that physicians are often reluctant to respond to disrespectful or uncaring behaviors toward patients by members of their medical team.249 These researchers also found that physicians often avoid or rationalize these behaviors by colleagues, respond in ways that avoid moral judgment, do not actually address underlying attitudes towards patients, and leave room for face-saving reinterpretations of the behavior.

  This is a problem. This failure to hold people accountable for bad behavior that results in emotional harms for patients could be passed on to the next generation of health care providers. (Think back to our discussion of the “hidden curriculum” for physicians-in-training from Chapter 1). We must begin to hold our colleagues (and ourselves) accountable—across all health care worker roles—and do our very best to prevent emotional harms for patients and families every day.

  But let’s be clear, we are not talking about eliminating heartbreak for patients and families. That’s not possible. Every day in every health care system, people will grieve over devastating unavoidable loss, such as the death of a loved one or receiving bad news about a diagnosis or prognosis.

  These are the outcomes that are largely unavoidable. What we are talking about is the avoidable, preventable heartbreak that comes from a patient’s loss of dignity and respect, the preventable emotional harm that adds the insult to injury. That is what must be prevented.

  Compassion in Times of Heartbreak

  Going back to the story of Kenneth B. Schwartz from the end of Chapter 4, the inspiration behind Schwartz Rounds, he said that compassion can make the unbearable, bearable. So for patients and families who are dealing with unavoidable loss and grief, compassion from their health care providers can help lessen the emotional pain people are experiencing, at least to some extent. Schwartz was convinced of this; he experienced it himself firsthand.

  Some health care providers just understand this intuitively. Like the entire care team did recently one night at Cooper University Hospital when a 60-year-old man was admitted to the ICU due to a spontaneous brain hemorrhage. Sadly, the bleeding was so severe that there was nothing the neurosurgeons could do to save him. He was dying, and rapidly declining with only hours to live.

  But that was not the only tragedy: His grief-stricken wife relayed the story that the patient’s daughter, who was on her way to the hospital with her fiancée, was to be married in just two weeks. She said it was going to be the highlight of the patient’s life. She begged the ICU team to do whatever they could to keep him alive until the daughter arrived.

  His daughter—who was, of course, devastated by the news that her dad was so gravely ill—was praying there was some way that he could be there when she got married. It was a heartbreaking scene when the daughter and her fiancée arrived in the ICU, saw his life slipping away, and realized that their dream wedding day would not include him.

  That was when the ICU nurses and technicians on duty that night—moved by deep compassion for this patient and his family in their moment of tragedy—sprang into action…as wedding planners!

  It was 2 a.m., and they did not have much time. An ICU nurse crafted two rings out of IV tubing and medical tape. Two ICU technicians quickly scoured the hospital for the rest of the essentials. The cancer unit had a beautiful bouquet of flowers that they gladly donated. There was a frozen pound cake in the back of the freezer of the staff break room that was fashioned into a wedding cake. Something blue? They borrowed a blue ribbon from some Easter decorations on another floor.

  But who was going to marry them? They called the clergy on-call, but since it was 2 a.m. and Dad was fading fast, it looked like the chaplain would not make it in time. Just then, one of the other ICU nurses stepped forward. He was an ordained minister and able to perform weddings.

  Imagine the scene: With wedding music playing from a nurse’s cell phone, and the family (including the bride’s sister who was on speaker phone from California) plus the entire ICU staff gathered around Dad’s bedside, there was a wedding. It was not the wedding that was planned, but it was nonetheless beautiful.

  In her father’s presence (and holding his hand), the bride and groom said their vows. Minutes later, he died. The patient and family went through unspeakable pain in the ICU that night. But the compassion that the ICU staff showed them is something that no one will ever forget.

  Weeks later, the bride wrote a very touching letter to the ICU staff, thanking them for all their compassion and for going the extra mile to allow her to be married in her father’s presence. It meant the world to her. She concluded the letter w
ith this:

  “Thank you from the bottom of my heart. Although my heart is broken, at the same time, because of you, it is very full.”

  Emotional Harm Can Be Heartbreaking…Literally

  Now let’s look at an entirely different type of experience that happened in a different ICU in a different hospital and with a different broken heart.

  Do you recall (from Chapter 1 on the compassion crisis) the NIH-funded University of Washington study where researchers found that fully one-third of end-of-life discussions with patients or families in the ICU included zero statements of compassion from physicians?54 That study was especially striking, because if there ever was a time when people need compassion, it is when facing the end of life.

  Remember also the description of Takotsubo cardiomyopathy from Chapter 3? That is the condition where, following an extreme emotional stressor or other triggering event, a patient goes into sudden heart failure and can suffer fatal cardiovascular collapse.96 A patient can actually die from a broken heart.

  One especially dramatic case highlights—and brings together—both of these scientific facts. A 72-year-old man was in the ICU with progressive multiple organ failure. As his critical illness continued to deteriorate, it was clear to the ICU team that his condition was not survivable.

  The next step was to talk with his family. The plan was to meet with them and explain how grave the situation was and then to recommend withdrawal of life sustaining therapy, to allow the patient to pass away peacefully. As sad as that situation is, if you practice intensive care medicine you encounter these matters on a regular basis. It is, of course, imperative to approach the family with all the care and compassion that one can muster.