Not Just Half a Doctor: Promoting Humanism During Stressful Times

More than 30 years ago, Arnold and Sandra Gold, supported by a Robert Wood Johnson Foundation grant, convened a meeting of 50 medical school deans to discuss ways to preserve humanism in medicine, which, even then, was increasingly compromised by the pressing demands on physicians and trainees [1]. From this meeting, the white coat ceremony was born—a ritual that enables medical students and other future health care professionals to set aside personal desires and commit to a lifetime of caring. Importantly, the white coat ceremony takes place as the students are matriculating, not at graduation like the traditional reciting of the Hippocratic oath. Subsequent Gold Foundation humanism initiatives include the Gold Humanism Societies at many medical schools, the annual Gold Humanism Award at the Child Neurology Society, and the biennial Gold Humanism in Medicine Workshop at the Child Neurology Society.

Child neurologists face many practice and academic challenges. Stress can negatively affect the way we provide care. A humanistic approach to medicine is always needed, especially under challenging conditions. The sixth biennial Gold Humanism in Medicine workshop at the Child Neurology Society's annual meeting was organized by Nigel Bamford and featured a panel of well-known senior child neurologists. Each panelist was asked to reflect on the insights, experiences, and coping skills that they have found useful during stressful times. Audience members were encouraged to offer their own insights.

The result was a meeting room packed with highly engaged colleagues. As the powerful personal stories and observations began to emerge, the hushed atmosphere reflected the group's common experiences and feelings. Here we try to capture some of the magic of this year's Gold Humanism in Medicine Workshop for those who could not attend.

When I was asked to participate in this panel, I must admit that my understanding of humanism was limited. So I looked it up and found that, amongst many things, humanism advocates for compassion, justice, equality, and the flourishing of all people. So, what does that have to do with you and your practice as a neurologist, particularly in these challenging times?

One of my early teachers taught me that medicine is more than science; it is also an art. And beneath all of that, medicine is, at its heart, a profoundly human endeavor. Humanism in medicine reminds us that healing begins not with a smart diagnosis or treatment but with connection. It entails truly seeing the whole person, not just the patient, and trying to understand their experience and what matters to them by listening to their story, and not just symptom hunting. By finding a way to truly see people, in the time that we have, with empathy and not just efficiency, we restore a sense of one's own humanity and dignity that no prescription alone can provide.

And so I ask you, when was the last time your presence, not your knowledge or skill, healed someone? In my own heritage, the Zulu philosophy of Ubuntu speaks to the importance of the individual and human connectedness. Ubuntu means “I am what I am because of who we all are,” or “Umuntu ngumuntu ngabantu.” Ubuntu essentially teaches that our humanity is bound up in one another; that to heal another is, in some sense, to heal ourselves. It is an ethic of interdependence—a reminder that compassion is the very essence of strength.

I will illustrate with a short personal story. I was born in South East London, England. Our family moved to what was then Rhodesia, now Zimbabwe, when I was only 6 years old. At the time, the country was still under apartheid. So we had to live in a Black-only township, stay in Black-only areas, and go to Black-only schools. The problem for my mother was that the schools were not academically rigorous, and my brothers and I did not speak the native language. So, my mother made my father drive her, with my brothers in the back of the car, from one white-only school to another white-only school, asking them to admit us. Of course, one “no” followed another. What didn't she understand? Apartheid meant separateness. Eventually, however, one school said yes, and we became, to my knowledge, the first Black kids who went to a white-only Jewish school in little Bulawayo, Zimbabwe. And here I am today.

In that simple story, my mother's courage and audacity were met with others' empathy, courage, and compassion that compelled them to act. Someone saw her, understood her, and was willing to act. Even though the injustice or suffering was not theirs, they did not ignore it. Their compassion was a demonstration of strength and power. That is the kind of compassion and courage that is required of us in medicine.

In our clinical practice, Ubuntu lives each time we pause before entering a room and remind ourselves: This person matters. It lives when we comfort a parent whose fear has no words, when we speak up for a patient who cannot, or when we acknowledge our own limits. It is in those moments—quiet, human, unrecorded—that medicine finds its soul again. I think it is in these moments that we can find peace and fulfillment.

And so, the power of you is found in your presence and the things that make you uniquely you.

Your accent, your laughter, your story, and your way of seeing the world are not distractions from medicine. These are gifts that medicine needs. They are what allow patients to see themselves reflected in their healer and to trust again in their own possibilities.

The doctrine of the constancy of change is attributed to the Greek philosopher Heraclitus (circa 535–475 BCE), whose teachings centered on the idea of constant flux and the impermanence of all things. Given how universally true this concept is, why are humans so resistant to change? And how do we, as physicians, deal with it?

I will focus on how we handle changes that occur in our professional environments, illustrating key points with a few of the changes that have personally affected me. Not all change is unwelcome, and not all unwelcomed change is important. And sometimes, welcomed change gets ignored or quickly fades into the background.

Since finishing training in 1989, I have worked for two hospital systems—22 years at the first, and nearly 15 years at my current job. One change that is often unwelcome but now feels totally unimportant as I enter the later stages of my career is the office shuffle. When I started practicing in 1989, I was assigned a beautiful office with new furniture and a computer. Two years later, I was told I had to move to a different office. No one asked my opinion. The new office was older, a bit beat up, and the oversized desk required a steady tandem gait to navigate the cramped space. Over the next 20 years, I moved offices four more times—sometimes to lovely spaces, sometimes not so lovely. At my current job, I am already in my sixth office. I have gone from a spacious 15-by-20-foot room to a cozy 6-by-8-foot nook with a glass door. Again, no one asked my opinion, but the size and beauty of my office do not reflect my worth. During one of these moves, a wise colleague told me, “If you want a nice office, have one at home—because in hospital systems, offices are never part of the contract.” I took his advice.

What about changes that have truly shaped the House of Medicine and guided my career? One major shift occurred in 1995, when the way we document patient care for claims submission was restructured. The update involved the Current Procedural Terminology (CPT), which redefined how we choose evaluation and management (E/M) codes for hospital and outpatient visits. I was annoyed, but curious. This change affected nearly every doctor and hospital system in the United States, and it led me to join the Child Neurology Society's Practice Committee, launching my three-decade journey in the world of CPT.

That involvement in turn led to my appointment to the American Academy of Neurology (AAN) committee that helped design the 1997 CPT update. I represented child neurology in crafting the neurological component of the physical exam. Again, no one asked my opinion about whether these changes should happen—but by volunteering, I was able to influence how they would affect me and my colleagues nationwide.

My CPT work eventually led to delivering dozens of talks at the CNS meetings and becoming chair of the CNS Practice Committee, as well as a 14-year stint on the AAN delegation advising the CPT panel, the body that creates, revises, and retires codes. At times, this work was maddening and frustrating. I lost more battles for neurology than I won. But in conversations with both “enemies” and “friends” (i.e., other specialty representatives), I learned that we all felt much the same way. In this case, I dealt with change by becoming part of the process. And no, I did not get any special favors—I had to follow the same CPT rules as everyone else. My advice for dealing with unwelcome change is to volunteer at the professional level to both help with and address changes within the House of Medicine.

Another seismic shift was the rise of the electronic medical record (EMR), especially for those of us practicing before the year 2000. We were all forced to adapt. Some changes were welcome—medical charts became universally accessible, medication lists were more accurate, and refills became easier to do. But the EMR's weak points are numerous, and 25 years into this experiment, we are still ironing out the kinks. That said, billions of de-identified data points are now available for research.

One of my mentors, Isabelle Rapin, once told me, “No one ever said being a physician was easy.” Adapting to change in our field can be annoying and stressful. We must lean on our families, loved ones, and colleagues to help us cope. If you have the energy and time, getting involved at the institutional level or within professional organizations like the CNS and AAN is one way to engage with the process, even if it is not always effective.

Change is constant. As Heraclitus described it, “You cannot step twice into the same river.” We must accept that institutions of all sorts will insist on change. Some changes, in the grand scheme of things, are unimportant, and elevating their significance is ill-advised. And many changes, believe it or not, make the world a better place. For the others, becoming part of the process may help your colleagues and your own peace of mind.

Bruce H. Cohen

Are we all experiencing a kind of whiplash from the pace of change in our world? I suspect that for most of us, the answer is a resounding yes. This topic immediately came to mind, perhaps because I feel it every day, or perhaps because it reflects our collective reality. Medicine has always evolved, but the velocity of change today feels unprecedented: new technologies, shifting guidelines, social polarization, and the enduring aftershocks of the pandemic. Just when we begin to feel steady, the ground shifts again. And amid all this often-unpredictable movement, what is truly at risk is not our knowledge or our skill, but something far more essential—our humanism.

Humanism is remarkably resilient yet constantly under pressure. Studies repeatedly show that what patients and colleagues remember most is not the specifics of what we did, but the compassion and presence we offered. Those moments of empathy anchor our profession, and they are precisely what turbulence threatens to erode as it distracts us from our core principles.

So, what do I mean by “whiplash”? Rapid, disorienting shifts that stretch us between our core values and the external pressures of modern medicine. We face burnout, workforce shortages, and the nonstop advance of technology—from electronic medical records to telemedicine to artificial intelligence. Add to that the conflicts of personal and professional life for the so-called sandwich generation, and it is no surprise that balance often feels elusive.

Cultural and generational divides, societal polarization, and time pressures all chip away at our capacity for authentic listening. This is compounded by fatigue and a sense of depersonalization. Humanism, in some settings, risks being viewed as optional rather than foundational. Yet within this strain lies an opportunity—to reaffirm what truly matters, to rediscover the reward and purpose that come from caring deeply for others.

What are our options? Individually, we can find renewal through personal reflection, journaling, connection with peers and family, or even brief debriefings after difficult encounters. Institutionally, we can nurture humanism through education, modeling, and space for reflection—reminding trainees and colleagues that every patient, family, and team member is a person first. To embed this philosophy in the training of future clinicians, we should prioritize debriefing and intentional support after challenging meetings or experiences.

In summary, the “whiplash” of our times strikes at the foundation of humanism. We cannot afford to treat compassion as something we practice only when convenient—it must remain our anchor. Our reality is that the changes around us will continue, likely at an even faster pace, but our shared humanity gives us stability and meaning. If we hold fast to that, our purpose not only survives these times, it deepens.

Ann Tilton

Our patients frequently have life-changing neurological injuries that cause disability, or at times conditions that lead to neurodegeneration or death. We strive to help navigate these difficult situations, working to provide support for the patient and family to cope with acute neurologic change and to manage disability in the long term, enabling the child to achieve their maximum potential and highest possible quality of life. While managing these often-tragic circumstances, physicians frequently experience grief or sadness themselves, especially following the death or poor outcome of one of their patients. Several studies have found that more than half of physicians experience a significant emotional reaction or grief after a patient's death [2].

Physicians who are early in their career or have had minimal exposure to death, and those who have had a long-term relationship with the patient, are particularly susceptible [3, 4]. In some cases, a death that is unexpected or that occurs from factors beyond the control of the physician contributes to a strong sense of grief. While some may manage their sadness with distractions such as exercise or video games, prolonged grief may lead to excessive consumption of alcohol or rumination and hyper-focusing on what went wrong. Left unresolved, extended or repeated episodes of grief may lead to depersonalization or compassion fatigue, degrading the physician's ability to help patients and families. It may also lead to serious grief or depression, significantly damaging their own quality of life.

It is important to normalize grief, to acknowledge that grieving a patient's death is a normal human response. We must strive to create a supportive environment where physicians feel comfortable sharing their feelings. At times, it is helpful to have debriefing sessions where the medical team can process difficult cases and support each other. Peer support is critical. More profound cases can be managed with grief rounds, providing structured time for staff to openly discuss their emotions and share experiences related to patient deaths.

Self-care strategies are highly personal, but in all cases, they should be employed to encourage healthy coping. Many physicians use exercise, mindfulness strategies, various hobbies, or the arts. I find listening to music, especially Mozart piano concertos, to provide a helpful context, allowing time to process the loss of a patient. Certainly, if coping mechanisms are not working and grief or sadness persist, physicians should seek professional counseling.

As a profession, we should develop educational initiatives, enabling training programs to equip early career physicians with communication skills for difficult conversations, coping strategies for patient loss, and the ability to recognize signs of depression and burnout before they become debilitating.

Scott L. Pomeroy

Our own humanism in medicine, as providers, is threatened by challenges large and small, and our responses to them can be addressed at the individual, practice-based, and organizational levels. Clinical medicine is difficult. While this is not a new concept, it too often goes unsaid.

The challenges range from the ordinary bureaucratic demands that impose deadlines and efficiencies upon us even when they interfere with the physician–patient relationship to the more cataclysmic threats that are the elephants in the room, specifically sleep deprivation that accrues into dysfunction, malpractice suits that can threaten one's very self-identification and self-worth to the point of depression and suicidality, and personal catastrophes such as personal or family illness. These threats often fester with little conversation or support.

On an individual level, self-care is necessary. This can range from meditation and yoga to intensely engaging hobbies and activities, but it is necessary. For me, three jam sessions a week plus intermittent gigs, and master-level swimming mandating regular exercise, is a formula that is busy but works. Everyone must do what works for them. The arts in particular play a vital role here, whether in performance or appreciation, from the visual arts to music, acting, poetry, literature, and all other forms [5].

On a practice level, survey data suggest that a patient's perception of empathy from a physician is based partly on the number of visits, duration of visits, and diagnosis. The data are probably more relevant to primary care than to pediatric neurology, but the figures are interesting nonetheless. Patients identified seven or more visits a year and visit durations of at least 20 min as important in sensing empathy from their physician. Diagnoses associated with less empathy were upper gastrointestinal and genitourinary complaints. At least the latter observation favors our specialty.

On an organizational level, pediatric neurology is a standout, with strong emphasis on the neurohumanities, as evidenced by the International Child Neurology Association series Neurology Through Art and Time (NTAT) [6]. Perhaps this reflects the time-honored recognition that neurology often attracts a certain renaissance phenotype. The NTAT series has covered the role of neurology and medicine in architecture, art, literature, music, and poetry. There are sessions that cover the relationship between autism and music to the Mozart effect, and historical features, including the neuroanatomical art and inventions of Leonardo da Vinci, and the Babinski response through art and time. The series interrelates clinical medicine and the arts, with presentations on cerebral palsy and art, music and early brain development, children's art and the diagnosis of headache, women's and children's health through the visual arts, and much more.

In a contemporaneous Sunday New York Times column discussing the broad value of the arts in society, David Brooks seemed to capture the spirit of the NTAT program's goals [7]:

The arts work on us at that deep level, the level that really matters. You give me somebody who disagrees with me on every issue, but who has a good heart—who has the ability to sympathize with others, participate in their woes, longings and dreams—well, I want to stay with that person all day.

Phillip L. Pearl

For almost 8 years, I had the privilege of serving in the leadership of the National Institutes of Health (NIH), first as Deputy Director of the National Institute of Neurological Disorders and Stroke (NINDS) and for the past 3 years as Deputy Director of NIH for Intramural Research. In this latter capacity, I functioned as the Provost and the Vice President for Research of a research enterprise that included the research laboratories and clinics of approximately 1200 NIH employee scientists and physicians who worked on the five campuses of the NIH across the United States. I went to the NIH after 32 years in academia because I needed a new challenge. I suppose one could say that the events of the past several months vastly fulfilled that need.

Throughout my time at NIH, because of my prior administrative, management, and faculty development experience, I was often called upon or dispatched myself to orchestrate strategic plans, mentoring and coaching engines, and rubrics that made sense of organizational structure and function. But this year began not with a call for structure, but rather with externally orchestrated and chaotic disruption thereof. To be sure, NIH was not at all alone in this, nor was it more severely affected than other agencies. But scientists and their policy colleagues are organized, spreadsheet kinds of people, and the upheaval was, to say the least, ego-dystonic. In what seemed like a hot minute, I suddenly became the senior-most NIH employee “leftover” from previous administrations (I arrived at NIH in January 2018, during the first Trump administration) who was neither displaced on the organizational chart's hierarchy nor placed outright on administrative leave or fired. Shortly thereafter, 1400 NIH employees—among them, 13 tenure-track investigators just starting their careers, each with postdoctoral and postbaccalaureate fellows on their research teams—were let go and cut off from access to anything federal, including their own data. Meanwhile, news reports were filled with quotes from federal officials saying that “no scientists were fired,” and “only nonessential policy-makers were dismissed.” I was not in a position to single-handedly get our workforce reinstated. That potential power was seated, as they say, above my pay grade. But my job became keeping everyone—the tenure-trackers, their mentors, their labs and clinic personnel, and sometimes, their spouses, patients, and clinical service-covering colleagues—calm, focused, and productive while others worked to get them back on campus.

I met weekly with them remotely as a group and often had additional in-person and remote individual meetings. I fielded angry and distraught emails from them and from their supervisors and colleagues, trying to be both hopeful and realistic about the chances of their reinstatement. When, in the midst of this, all federal employees were ordered to email weekly to departmental human resources offices and their supervisors a list of “the five most important things you did this week,” I made sure to send everyone in the NIH intramural research program a reminder before each due date, and I answered dozens of questions each week, some from people who had just undergone major surgery and were worried they would lose their jobs if they could not send in a list from the intensive care unit in which they were still a patient.

Ultimately, we lost many outstanding and dedicated colleagues, some engaged in federal service for their whole professional lives. Some departments were decimated, and labs and clinics were forbidden to do such things as order equipment or supplies or communicate with colleagues outside the NIH scientific community. But we did get our physicians and scientists back, and my colleagues and I managed to keep them engaged, relatively calm, and ready to hit the ground running when the shackles were removed. And I suspect many outside the NIH were greatly surprised by the heroic and successful efforts of many decimated departments to keep the NIH infrastructure robustly, if a bit more slowly, active and functional for all our employees.

This is all by way of telling you that, while I think it is likely that no one who pursues a career in child neurology needs to be told to exhibit humanism towards their patients and their patients' families, we all need, every once in a while, to be reminded to exhibit that same humanism to our professional colleagues. Especially when the chips are down, do not forget to support those who join you in supporting our patients and families.

Nina F. Schor

We hear a lot these days about stress and burnout among physicians, but it is wrong to assume that only modern physicians face these difficulties. Medicine has always been an intrinsically difficult, stressful profession whose members must deal closely with untreatable diseases, death, and social turmoil. While burnout and stress among physicians are not unique to modern physicians, it does seem likely that these problems are now exacerbated by the systematic shortcomings of our healthcare system [7, 8].

What is new is the increasingly corporate nature of medicine, accompanied by pressure to see more and more patients, increased documentation for the sake of documentation, and added nonclinical duties. Additionally, the growing use of artificial intelligence in medicine offers both the potential for improved care for some conditions and the risk of further alienation of patients. And while the scores of new diagnostic and treatment methods are wonderful, the evolution of modern medicine into a more firmly grounded scientific discipline may have made us more process-oriented and less patient-centered. Paradoxically, despite our growing ability to effectively manage serious diseases, patients seem to have less and less confidence in physicians. Perhaps a renewed emphasis on humanism can mitigate this erosion of trust.

Adopting a humanistic approach to patient care also benefits physicians. Humanism helps us to stay grounded, to stay engaged, and to see things from the patients' viewpoint. Why do some physicians fare so much better than others when facing similar stressful situations? Why am I still engaged and working full-time long after many long-term colleagues have retired? Even within the same specialty and with the same workload, some people remain grounded and productive while others decompensate. The varied responses of physicians to professional adversity can be partly explained by intangible individual qualities such as resilience, perfectionism, strength of purpose, and expectations. Humanism provides the physician with a pathway to increased resilience, enhanced strength of purpose, and more realistic expectations.

If humanism is a key to improving patient satisfaction as well as physician resilience and well-being, are there ways to increase humanism in medical practice? Basing reimbursement and compensation on patient satisfaction scores is ineffective. The increased recognition of the value of humanism in medical education in recent years is a positive development, but to be effective, humanism needs to be better integrated into every phase of medical school and residency training. This may be difficult for child neurology, given the limited curriculum flexibility allowed by our current outmoded training requirements [9, 10]. Patients often judge the quality of a physician visit based on their perception of the practitioner's empathy and engagement rather than the length of the visit. So while the pressure to see more patients may be an impediment, it does not always prevent a patient-oriented attitude.

Being a physician has always been challenging, and it is likely to remain so even if we can address some of the systemic issues. Embracing humanistic values may be our best opportunity to offer healthcare that patients value and that physicians can sustain.

E. Steve Roach

Nigel S. Bamford: writing – original draft, writing – review and editing, conceptualization. Nomazulu Dlamini: writing – original draft, writing – review and editing. Bruce H. Cohen: writing – original draft, writing – review and editing. Ann Tilton: writing – original draft, writing – review and editing. Scott L. Pomeroy: writing – original draft, writing – review and editing. Phillip L. Pearl: writing – original draft, writing – review and editing. Nina F. Schor: writing – original draft, writing – review and editing. E. Steve Roach: writing – original draft, writing – review and editing.

E. Steve Roach is the editor-in-chief of Annals of the Child Neurology Society. Bruce H. Cohen and Phillip L. Pearl serve as associate editors of ACNS. The other authors declare no conflicts of interest.