Grief Connects Us

by Joseph D. Stern

  The physician is meant to be the expert, the rock, unflappable in the face of adversity or disaster. Yet one day, we become patients, too. We die just like everyone else. Try as we might, we are powerless to change any of that. In the end, a sympathetic word, a hug, released a torrent of emotion for this devoted, successful oncologist. With my sister’s death, I feel this suppressed ache; I wish I had been able to save her. When I look back on my career, how is my sister’s case any different from those of my other patients? True, I was more personally invested, but her life was no more significant or meaningful than the lives of my other patients, except to me.

  “I don’t know” is not typically part of a neurosurgeon’s vocabulary. Yet, honest connection with patients requires the ability to express doubt. Medical delivery is not generally set up for this. Patients want to believe in the authoritative offerings of modern medicine, and doctors want to believe in their ability to heal and help their patients. Both want success and shrink from failure. Neither is comfortable when things don’t work or do not go according to plan.

  Currently, approximately 55 percent of physicians admit to being burned out. This burnout ranges from job dissatisfaction all the way to the decision to take early retirement and can manifest in their lives as substance abuse, divorce, and even suicide, depending on the severity of this experience. As Stacy Wentworth indicated in her interview, we are poorly trained to handle the implications of death or failure. We have a lot on our plates, so at times counseling patients about death and dying feels like yet another burden. As physicians, we are expected to solve problems and to work, often it seems, without stop. These responsibilities are in addition to growing dissatisfaction with electronic medical records, regular arguments with insurance companies, and medicolegal aspects of practice.

  Death and dying contribute to physician burnout. This includes “compassion fatigue,” or the feeling of being overwhelmed by regular and seemingly unrelenting loss, and also our inability to process grief and loss personally and within our professional lives. If we look, there are solutions readily at hand. Generally, in patient care, we have been transitioning from being isolated practitioners to becoming members of treatment teams, in which patient care duties are shared with others. The care of dying patients should be no different.

  The patient’s experience, both in and out of hospitals, needs to be designed with compassion as the primary driver of care decisions and environments, allowing patients to best meet their needs. As Matt Manning said, people should not have to check their dignity at the door upon entering the ICU. Patients lose their clothes, possessions, and identities when they don a hospital gown and get hooked up to machines in a hospital bed. Research supports ways to improve the patient experience and maintain dignity in the ICU. My sister surrounded herself with large photos of her husband and children during each hospitalization. This helped her maintain her identity and reminded her that she was more than a patient. Staff and visitors recognized that this was a person rooted in a world far removed from the cancer ward.

  Something as simple as placing large monitors in positions of prominence on which photos of family members could be displayed would go a long way toward humanizing patients and grounding them in the lives they have been pulled away from. These would not interfere with treatment, they would not pose an infection risk, and they are inexpensive. Perhaps patients checking in for long-term care could arrive with a few possessions and a flash drive with selected photos to plug into the monitor. This might help decrease “sundowning,” a common phenomenon in elderly patients who become disoriented during hospitalizations. Efforts to maintain night and day routines, respecting our circadian rhythms, would also help prevent the disorientation that comes with the sleep deprivation, which is a hallmark of a stay in the ICU.

  Sound management is similarly important. For many people, music connects them with their world and often provides a calming or transporting influence. It would be simple to invite patients and their families to bring a playlist of their favorite music to listen to during their hospitalization. Particularly at the end of life, having your favorite music with you might help take the edge off the fear and help soothe the patient and family. In both instances, simple modifications to the inpatient room environment would go a long way toward improving the patient’s experience.

  While I visited Victoria, I was struck by the disruption caused by the frequent beeping of IV pumps. My sister would hear a beep, then summon a nurse, who would come into her room, often after many minutes, to address the source of the alarm. Yet alarms do not prioritize the severity of a problem and can frighten the patient. This could all be done more effectively through wireless communication to the nurse, without the intermediate step of the patient being “alarmed,” only to report the problem to the nurse, who has to come check the pump, identify the source of the problem, turn off the alarm, often leave the room to get a new IV bag, and then return with the new medication. This would cut out two steps, response times could be monitored, and the patient would not be disturbed or awakened. Here, technologies could be adopted to improve the patient’s experience and replace intrusive alarms that currently disrupt patients.

  New technologies need to improve rather than detract from patients’ experiences. Health systems need to implement these technologies with empathy in mind. There are many ways technology interferes with connecting practitioners with their patients, but this often seems less a failure inherent in the technology itself and more often is our failure for allowing this to happen. We have let electronic medical record systems intrude on and erode doctor-patient interactions; the necessity of making computer keystrokes has supplanted nurse-patient connections. Yet, this does not need to be the case. Technology needs to be implemented with the core values of patients (autonomy, respect, experience) in mind, rather than relegating these to an afterthought. Thus, photo displays, sound systems, and wireless IV pump notifications that do away with ever-present “beeps” are simple technological innovations that would go a long way toward improving and humanizing patients’ hospital stays.

  By illustration of poorly implemented technologies, my father-in-law, Gary Crawley, who is being treated for multiple myeloma (a blood cancer), described his ongoing experience with check-in at two cancer centers. The first involves a detailed review of his personal and insurance information with multiple repetitive questions every time he arrives for treatment, no matter how frequently his appointments occur, despite the fact that nothing in his personal profile has changed. He finds this process dehumanizing, time-consuming, and irritating.

  At the second cancer center, he presents his identification card to the clerk who greets him warmly, swipes it in the computer, asks if anything has changed, to which he replies “No,” then takes a seat. Check-in at this center is easy, while at the other one it is burdensome. This is not a problem with the technology itself, but instead reflects the way the staff has been instructed to gather and verify patient information and interact with hospital information systems. The two different health systems send a clear message to patients about how they are valued well before any actual care has commenced. At the first, the act of obtaining information has mistakenly been valued higher than an empathetic greeting of the patient, while at the second, the patient’s comfort and convenience is more highly valued. Ironically, I suspect the quality of information gathered in both centers is identical.

  Other disruptive influences include the shift-work model in hospitals, which does not respect the natural cycle of day and night and is not conducive to healing. When I am in the hospital in the middle of the night, I am frequently surprised by the level of noise surrounding me. Staff members confer in the hallways and nursing stations, carts crash and bang, and alarms beep, chirp, and wail all through the night. Noise levels in the ICU can rise to 85 dB at night (the sound of a food blender running), whereas 35 dB would be more appropriate for maintaining a restful environment. Why are we surprised when patients gradually wear d
own with exhaustion during prolonged hospitalizations and become confused or, at times, delirious?

  Part of the dehumanizing process of a hospitalization is the imposition of “medically indicated” routines that are performed for the convenience of the hospital personnel rather than out of regard for the patients. This includes waking patients up in the middle of the night for routine vital sign monitoring and imposing schedules on activities that could be allowed to be more spontaneous without any detriment to the quality of care. It would be wonderful for hospitals to begin to consider patient comfort as a high priority, rather than focusing on task completion according to a rigid external schedule. While patients need twenty-four-hour monitoring and shift work is an inherent feature of hospital staffing, far more could be done to respect patient needs and sleep-wake cycles.

  Mary Magrinat’s experience resonated with me. She had an intravenous port placed surgically for the administration of chemotherapy. The doctor placed it “for the convenience of the nurses,” so that it would be easy to access. The trade-off for Mary was an unsightly and readily visible port that she was unable to hide without buying new, higher cut clothing. She resented this, as it was uncomfortable and served as a constant reminder to everyone around her that she was ill. Eventually, Mary insisted the port be removed. Whenever possible, we should think about what is best for the patient and make decisions according to those standards, rather than what is convenient for the medical staff. Many things are done in hospitals and medical practice out of tradition and/or in the name of efficiency. It is time we turn this way of thinking on its head and reshape medical-care delivery so that it is based on the needs and respect of the patients we are charged to serve.

  Healthcare will improve if physicians and medical systems develop greater empathy for patients and for each other. I have given a few examples of how to redesign care delivery and patient care environments. There are many more ways patient care could (and should) be redesigned. Physicians, also, must give voice to their experiences, many of which have shaped their personal and professional lives. Doing so would benefit practitioners, the health systems they work for, and the patients they serve. I encourage medical schools and health systems to support the creation and implementation of courses and workshops, which could combine readings, empathy training, and interview training, in which physicians are encouraged to share some of their experiences with each other.

  These concerns are now more widely recognized than when I was trained as a physician and later as a neurosurgeon. Medical schools are teaching the importance of patient respect and compassion, and surgical training programs are also changing; cultures of abuse are disappearing, as are the legendary professors known for their towering egos and harsh didactic manners. A surgeon’s bad behavior could once be excused by the perception of his daring and surgical competence. In the face of data indicating that a lack of compassion and connection with patients leads to poorer surgical outcomes and compromised patient safety, it is clearly time to end these practices and shift the surgical culture to one in which compassion has a central place in every operating room and surgeons are encouraged to acknowledge their emotions, rather than to repress them. The same is true for hospitals and healthcare as a whole. It is time for us to put patients, rather than diseases, at the center.

  CONCLUSION

  compassion and coronavirus

  What is most impressive in the hospitals is not the ventilators, CT scanners or other high-tech wizardry. It’s the compassion and courage of health workers, and the intervention that struck me the most was decidedly low-tech—the hand-holding.

  —NICHOLAS KRISTOF, “LIFE AND DEATH IN THE ‘HOT ZONE’”*

  Each time I thought I was done writing this book, an event occurred that caused me to rethink everything. The first was the night Pat had his hemorrhage in LA, ushering in his death. The second, which developed as my agent Linda shopped my book proposal to publishers, was the gradually unrolling coronavirus pandemic. Over the course of spring 2020, we watched as the infection swept across the world. Life as we knew it stopped. Jobs and businesses disappeared; people were quarantined and became ill. Everyone’s life has been profoundly altered by effects ranging from job loss, hunger, social isolation, illness, and death.

  For the first time in my lifetime, a sense of grief and loss has washed over the entire planet. Certainly, these are experiences we each have individually: they define the human condition. Yet, during the pandemic, this has been an experience we have all shared. It has etched itself into our collective psyche; we will be forever changed because of it. As I said to a dear friend on the accidental death of his teenage son, who died at the height of the pandemic: grief connects us with our better selves. There’s no going back.

  That said, I wouldn’t wish it on anyone. The losses we have felt during this time have been magnified in their intensity, as the rituals we rely on to mark the transitions of our lives have been disallowed. My friend’s family was unable to have a funeral for his son, just as others have died alone and been summarily buried without celebration. Weddings and graduations have been canceled, births and deaths have been unattended. In the periods of both Victoria’s and Pat’s deaths, being present and surrounded by family members had great power, gathering to eat together to make decisions was restorative, and having the opportunity to reminisce and attend their funerals helped provide a path toward healing.

  Practicing medicine through the pandemic, we wear masks on setting foot in the hospital. Patients are kept in their rooms without family members. The surgical waiting room is emptied and the only contact we have with patients’ families is by telephone. Simple yet meaningful gestures, like a touch or a smile, are curtailed. Physical contact no longer conveys connection; instead it carries fear and the possibility of infection. It is very difficult to establish empathetic connections when everyone is covered with masks or, in more extreme situations, by masks, goggles, and face shields.

  I watch as my elderly parents isolate themselves to prevent infection. We cut off visitation to my father-in-law, already immunocompromised from chemotherapy for blood cancer, for fear of exposure to the coronavirus, even though he lives down the street from us. This makes sense, since I was likely to become exposed. My father, in his early nineties, sees people only incidentally while he shops for groceries every few weeks. Otherwise, he is completely alone. His only contact with his family is through video chats.

  What’s so different now? For a start, we are all on a level playing field. This is a new virus, so we are all learning about treating it, together. Physicians are no longer in a position of power with asymmetric information. Patients are the ones who usually feel openly vulnerable and afraid. Doctors typically try to cover that up. If anything, now it’s the opposite. The doctors are at greater risk than the general population, since sick patients are concentrated in hospitals and no one has any protection from the virus, other than by avoiding it. In fact, a tension exists between healthcare workers and those who aren’t in healthcare. Social isolation is currently the only way to prevent viral spread and to protect healthcare workers, at least until there is greater testing, contact tracing, better treatments, or a vaccine. In the meantime, physicians are dependent on everyone else for their own protection. Thus, the tables are turned. Patients and society now have the upper hand. It is the physicians who are now vulnerable.

  I was recently exposed to a patient with COVID-19. She came into the ER with a large subdural hemorrhage, from which she was dying. She had a blown pupil (a sign of impending herniation and death), was no longer moving one side of her body, and was rapidly losing consciousness. We intubated her emergently and rushed her off to surgery. The pharmacist corrected her blood clotting disorder. Routine questions of her husband raised our suspicions when he said she had been coughing for the last few days and had a low-grade fever, even though her temperature in the ER was normal. We took precautions in surgery and everyone wore protective gear, including N95 masks.

&n
bsp; After her surgery, we tested our patient (our hospital had only recently attained the ability to perform rapid testing with a two-hour turnaround). Her test came back positive. We moved her from the Neuro-ICU to the newly created COVID-ICU. Testing allowed us to screen patients and protect ourselves from inadvertent exposure. Without it, many healthcare workers would have been exposed, potentially sickened, and died. By my estimation, almost thirty people had cared for this patient, including EMS, nursing, physicians, transporters, OR personnel, housekeeping, respiratory therapists, and radiation technologists. Once we knew she was infected, we were able to take precautions and wear appropriate personal protective equipment (PPE). But some of us had been exposed.

  A lack of preparation for the pandemic, including testing, ventilators, and PPE, has intensified the anxieties of physicians and healthcare workers. So, too, has the slow acceptance of social distancing measures—the incomplete adherence to or downright rejection of these simple interventions. Instead of relying on proven public health and scientifically based measures to prevent disease spread in the US, political manipulation, disinformation, bribery, and greed have been allowed to dictate social policy, all at the expense of the safety of the general population and of healthcare workers in particular. There has been a pervasive leadership vacuum and a lack of will to harness widespread energy and goodwill for the greater good.

  Yet, despite these failings, something extraordinary has happened. The unflinching bravery, generosity, and self-sacrifice of my fellow healthcare workers as they continue to look after their patients, even while exposing themselves and their families to risk, inspires me. In the middle ages, doctors were some of the first to leave infected areas at the outset of the bubonic plague. Here, we have met the challenge head on.