Grief Connects Us

by Joseph D. Stern

  CHAPTER TWELVE

  compassion as a core value: improving the patient experience

  Historically, physicians-in-training have been taught: “Don’t get too close to patients.” The thinking was that keeping a safe distance from patients—at least emotionally—would protect the caregiver by preventing emotional overextension and thus reduce the risk of getting burned out … the preponderance of data among health care providers actually shows the opposite to be true … the vast majority of published studies testing the association between compassion and burnout in health care providers found an inverse correlation…. That is, high compassion was associated with low burnout, and low compassion was associated with high burnout … these data do not support the historical thinking that too much compassion will burn you out.

  —STEPHEN TRZECIAK, MD AND ANTHONY MAZZARELLI, MD, COMPASSIONOMICS

  We who work [in health care] are also unwitting agents for a system that too often doesn’t serve … Because health care was designed with diseases, not people, at its center.

  —BJ MILLER, MD

  A good physician treats the disease; the great physician treats the patient who has the disease.

  —WILLIAM OSLER, MD

  Compassion is of vital importance in all areas of medicine, particularly surgery. Compassion means “to suffer with.” It reflects the emotional response to another person’s pain and involves an authentic desire to help. Not just the recipients, but also the givers of compassion can be affected in powerful ways. This is something we are rarely taught, often acculturating these values during our training. Empathy, our perception of others’ emotions and perspectives, is essential for us to develop compassion. It has been shown that training can increase empathy in medical practitioners.

  The opposite of compassionate care is transactional medical care. Maintaining the human connection between the patient and doctor, the bond of trust that carries through surgery and under general anesthesia, can be subverted by a relationship with the patient that discounts or eliminates the compassionate connection in favor of a transactional one. We see this when patients feel they have been objectified or that their doctors hold them in callous disregard. We see this when surgeons rush, cut corners, or recommend procedures based on the financial reward they provide. This is one of the problems inherent in the current cost and reimbursement structures of medical practice: we are encouraged to do more and are paid better the more procedures we perform.

  In their book Compassionomics, Stephen Trzeciak and Anthony Mazzarelli show, with data, that a lack of compassion is often a learned behavior. While trainees may begin with empathy and compassion as core values, they often lose these during their training. Much of this occurs through the “hidden curriculum”: “that which the school teaches without intending or being aware that it is being taught” (p. 18). For better or worse, trainees model their behavior on their mentors’ examples, absorbing and imitating their approaches. As I discussed in Chapter Two, I trained under Buz Hoff at the University of Michigan. He fostered positive models of humanity and caring for both practitioners and patients. Other training programs may not be as supportive or may promote negative motivational models, which can include intimidation and fear.

  We intuitively know that it is important for us to respect and feel compassion for our patients. But does this really matter? Are there data supporting the hypothesis that compassionate patient treatment produces better outcomes? Is the OR a place where compassion should be checked at the door? Or does compassion belong with our patients through their entire surgeries, exemplified by the surgeon and inculcated in the staff? There are actually very strong data supporting the importance of compassion in the operating room; better outcomes and greater patient safety are both strongly correlated with greater compassion.

  Two of the main components of burnout are emotional exhaustion and depersonalization. Trzeciak and Mazzarelli provide evidence that “depersonalization and emotional exhaustion among surgeons were significantly associated with a higher incidence of major surgical errors.” They go on to explain that depersonalization

  … involves objectifying patients as well as being uncaring and callous towards them … surgeons scoring high in emotional exhaustion (which leads to compassion fatigue) are prone to a lapse in clinical judgment that can result in major error…. Numerous other clinical studies have similarly supported that health care providers’ inability to build meaningful relationships with patients can lead to low quality of care and is a risk to patient safety. For example, a Swiss study of 1,425 nurses and physicians working in ICUs found that emotional exhaustion—a precursor to compassion fatigue—among ICU staff was associated with higher ICU mortality. So, it’s not just a higher error rate … it’s a higher death rate…. lack of compassion among health care providers can be a serious patient safety risk. (p. 171)

  Not only does greater compassion lead to better surgical outcomes and enhanced patient safety, it also decreases burnout in practitioners. Almost counterintuitively, our efforts to distance ourselves from the emotional impact of our work do us far more harm than if we accept both the grief and sadness that regularly accompany them.

  The third main component of burnout is a sense of the lack of personal accomplishment or feeling that what you do doesn’t make a difference. Greater compassion for and connection with our patients mitigates all three. The more we connect with our patients and express compassion, the better our patients fare and the more engaged we remain as practitioners. At the same time, operating with self-compassion allows us to forgive ourselves for the errors we may make. We are often our own harshest critics; when things do go wrong, our self-criticism can be withering and we lack the same kindness for ourselves that we try to show toward others.

  Jodi Halpern explores the importance of empathic connections between doctors and their patients, including the philosophical and psychiatric basis for empathy, in From Detached Concern to Empathy: Humanizing Medical Practice. “The idea that accompanying patients in their suffering can be therapeutic leads to an alternative to the ideal of detached concern for patient-physician interactions.” She describes the need to heal not just physical bodies but also patients’ emotional states. “Emotional receptivity is needed if physicians are to acknowledge the pain and suffering that patients do not, and sometimes cannot put into words.” (p. 145)

  Dr. Halpern believes that empathy can be cultivated by helping “students develop and retain their engaged curiosity about other people’s distinct experiences.” She admits that this is difficult given the time pressures on physicians, the need to make rapid diagnoses, and the “pressure on physicians to know rather than to express uncertainty.” As I suggested earlier, one way to counter the time pressures and expectations on physicians is to adopt a team approach to patient care and to encourage other members of the treatment team to foster empathic connections: “in practice, nurses, social workers, and other caregivers are frequently sources of empathy. Integrating empathy into medicine means including it in the entire team’s approach.” (p. 135)

  Early in my practice, I tried to keep to medical subjects and facts when I spoke with my patients. Expressions of concern and compassion were permissible, but I consciously maintained a distance between us. Now, without the protection afforded by emotional armor, I am more aware of, and receptive to, the suffering of my patients. Perhaps it is because of sadness I feel about their frailty or loss, but I am also touched by their kindness and heroism. I have always been genuinely interested in their stories. William E. Williams, in the midst of his own struggle with brain cancer, brought me to tears when he asked about Victoria just after she died. When another patient, Stuart, heard about my sister’s death, he stood up and spontaneously hugged me. Their compassion in the face of their own circumstances has taught me much about empathy and grace.

  Christine came to my office with her elderly mother, Sarah, in tow. I had done surgery to remove pressure on Sarah’s thoracic spinal cord in the hopes o
f restoring her ability to walk. I had operated on Christine’s son, Maurice, many years earlier, removing a brain tumor, and she had thought so highly of me that she had brought her mother from Florida for her operation. The surgery had gone well from a technical standpoint, but Sarah did not regain the ability to walk and remained in a nursing home. As I spoke to Christine and Sarah, there was no recrimination, only sadness over what had been lost. Maurice had recently had a stroke and could no longer speak or walk. Christine’s husband had died of cancer the year before. And now, her mother was wheelchair-bound and could no longer care for herself.

  These losses have narrowed both women’s existences and deprived Christine’s mother of the connections and meaning that have been the basis for her daily life. She is no longer able to live independently at home and has lost the ability to perform simple activities we usually take for granted, such as dressing, using a toilet, or feeding herself. As I sat there and listened, I realized there was little I could do medically. I ordered an MRI to make sure there was no continued pressure on Sarah’s spinal cord, but I told them it was unlikely I would be able to surgically fix the problem. Although Sarah might make some small improvements with continued rehabilitation and physical therapy, her weakness was most likely permanent. I asked about the nursing home and about Maurice’s efforts toward speaking. I sat with them and listened to their stories, aware that their troubles were not fixable.

  As a newly trained doctor, I would have been concerned about the medical facts, fearful Christine would somehow hold me responsible for Sarah’s lack of improvement. I would have shown concern and sympathy, but then moved on to the next patient. As the three of us convened in my examination room, I didn’t have an answer for their suffering. Yet our bond was powerful, and in a small way, perhaps it gave them comfort. For them to know that I cared, that I was sorry for their losses, that I would try to help them both as much as I could—that was the best I could offer.

  I spoke with a good family friend, Sue Upton, whose experience illustrates the importance of strong communication between physicians and families. A clear grasp of the medical facts and being able to ask the right questions helped her family make optimal medical decisions. Several years ago, her father, Larry, died at Maine Medical Center as the result of herpes encephalitis, an illness that developed rapidly and robbed him of his intellectual powers, rendering him completely dependent on others. With his family’s blessing, he died peacefully after the medical team transitioned from aggressive care to comfort care. Orchestrating his death in a way that felt dignified and complied with Larry’s wishes required multiple conversations between the medical staff and his family.

  When he was brought to the emergency department by ambulance, Sue’s father was not conscious, and given the suddenness of his brain infection, he had not prepared any specific instructions for his care. A tracheostomy and transfer to a nursing home had been planned. His treating physicians expressed the unlikely hope of eventual improvement/awakening and possible rehabilitation. Sue found the medical staff to be kind, yet somewhat detached and clinical. They spoke in terms of percentage chances for her father’s progress and could not say with certainty whether or not he would improve.

  After I spoke with her, Sue and her mother went back to the doctors and asked them to leave the clinical analysis to the side and to speak candidly, to go with their gut. This opened new horizons, since doctors often feel compelled to practice medicine with liability in mind. We are asked about probabilities and “medical certainty.” This can make for defensive legalistic interactions between doctors and families. We are trained to treat, rather than to back off, especially in murky situations. Sue asked the hospitalist, Dr. Simmons Thomas, what he would do if this were his father. His demeanor changed, and to her astonishment, he teared up as he related that this was the very situation he and his family had faced only three weeks earlier. They chose to withdraw care and allow his father to die. Dr. Thomas understood, firsthand, how difficult this decision was to make and how profound an experience it was to bear witness to a parent’s death.

  In that moment, Sue and her mother made a vital connection with her father’s physician. They became allies and accepted his advice. Dr. Thomas became comfortable enough to let down his guard and provide the best guidance he could, given the circumstances. They asked him to tell them when it was time to let go and withdraw the ventilator. They were able, as a team, to give up on heroic interventions and life supported by machines. Sue’s parents had already spoken at length about spirituality, death, and what they wanted at the end of their lives. They had a living will in place. This helped the family to ease toward withdrawing treatment and allowing Larry to die without a prolonged decline in which he would have no say.

  Sue showed great courage when she initiated the conversation about withdrawing treatment. Her questions and willingness to face painful truths led to a compassionate consensus among the medical team and her family members. The dialogue got everyone on the same page. If that had not happened, it is possible that Larry would have received a tracheostomy and a feeding tube and been transferred to a nursing home, only to die there at a later date. In the absence of an empathetic connection, there is a danger of medicalizing death and applying legal standards of certainty, which we as physicians frequently lack. Perhaps it is better to be guided by more nebulous standards of comfort and compassion, even if this means letting go of the ability to predict an outcome with “medical certainty.” Families will sometimes cling to the chance of recovery and are willing to go the route of tracheostomy, feeding tube, and nursing home placement so as not to extinguish the possibility, no matter how unlikely, of recovery. Yet when we as physicians are faced with end-of-life decisions for our own family members, as was the case in both my and Dr. Magrinat’s experience, most of us choose not to intervene, or to intervene in more limited ways and to forgo additional treatments. This allows us to celebrate the life that has been lived, rather than to focus on medical interventions.

  This situation was illustrated with great clarity by the experiences of two good friends, Sue and Bill Chandler. Dr. Chandler, a neurosurgeon, was one of my professors in Ann Arbor. He retired after a heart attack, then moved with his wife, Sue, to Greensboro, to be with their son, his wife, and their two daughters. Their son and daughter-in-law are both physicians and work in our local hospital. Sue and Bill read an earlier draft of this book and gave constructive suggestions for improvements. Bill later told me that reading this book together helped them both confront their own mortality and prepare for Sue’s sudden and daunting illness.

  Sue and Bill were active and in excellent health. Two years ago, she began to experience painless abdominal bloating. A CT scan was obtained, which showed widely metastatic pancreatic cancer. This diagnosis carried an average life expectancy of six months. Initially, Sue didn’t want any treatment. Then, she agreed to chemotherapy, but on a limited basis and only if the follow-up CT scan showed improvement. This was initiated in Ann Arbor, but they transferred her care to Greensboro to be closer to their son and grandchildren.

  Sue and Bill made every decision through a filter of maintaining quality of life. They understood the implications of these choices; they had lived through Bill’s experiences as a neurosurgeon, of making life-and-death decisions on a daily basis. We had tea together shortly before Sue died. She showed Kathryn and me a photograph of herself standing on the stage with her granddaughter, celebrating her victory in a dance competition. Sue cried tears of joy as she told us about this event.

  A few days later, Sue had a stroke. This was likely the result of increased clotting that frequently accompanies a diagnosis of cancer. She lost the power to speak or to move the right side of her body. I met Sue, Bill, and their son Jesse (an orthopedic surgeon) in the Emergency Room to help decide on a treatment plan. Bill, who spent his career as a vascular neurosurgeon, decided which interventions to pursue and when it was time to stop. He allowed for a clot retrieval procedure to be perf
ormed and, for a while, Sue improved. But the clot recurred and her stroke symptoms of paralysis and aphasia (loss of speech) returned. At that point, they decided to move Sue to hospice and she died a few days later, five months after she was diagnosed with pancreatic cancer.

  The family’s experience, while marked with sadness and loss, was one of profound gratitude. They found the medical staff at every turn to be compassionate and caring. Sue, who faced her diagnosis bravely, lived as fully as she could. She said her goodbyes and celebrated with her granddaughter. In an email she sent me soon after her diagnosis, Sue told me, “I cleaned out my closets.” This was something she wanted to do for herself and for her family. The family’s intimate understanding of the power, and also of the shortcomings, of medical treatments allowed them to make selective use of the options available to them, while always focused on comfort, quality of life, and compassionate connections with each other.

  Support groups for patients and their families exist in many healthcare institutions, but there are none for doctors. I was recently on a panel discussing end-of-life care and was struck by a story told by a nurse at our cancer center. She recalled how staff members were speaking about patients and their deaths from cancer, when Dr. Bronfman, an oncologist who always seemed taciturn and clinical, began to weep. He was overcome with sadness over the losses he had endured, of countless patients he had cared for and cared about yet was powerless to save. Dr. Bronfman had never been in a position to express his grief. There was always another patient to see, always another tragic story to contend with.