By highlighting the strength and courage of our patients, we can sustain hope for our patients and their families.
My first admission as a pediatrics intern six years ago was a severely underweight 18-year-old college student with anorexia nervosa. Her BMI hovered around 10 and she suffered from osteoporosis, bradycardia, hyponatremia, and thermoregulatory dysfunction. She’d been struggling with the disease for nearly a decade and had been to multiple treatment centers, some with greater short-term success than others.
Hate and anger
Her family was exasperated by the long and arduous course her illness had taken, but was intimately involved in her care. Her belongings were pink and colorful, a stark contrast to her pale complexion and frail frame. She treated staff with haste and anger, was minimally participatory in meals, behavioral interventions, or psychotherapy. Her rage, deceit, and inability to engage in treatment tired the most caring among us. Days turned into weeks, and then months on the wards—we used contract protocols, observed meals, bed rest, NGT feedings, fluid restriction, and medications.
Six times a day we asked her to face her demons—on the most concrete level, to food. What we were really asking her to do was to confront her own self-worth and sense of purpose; we were asking her to trust in the team and to relinquish control, the thing she was trying desperately to hold on to. Occasionally she participated in the treatment; mostly she found ways around it. She riled up the floor in an extreme way, though trusted me in a way that allowed me into her world.
As the intern, I became the receptacle for the displaced anger and impotence the staff felt, an early introduction to one of the many roles I would take on as a psychiatrist. I worked hard to validate her experience, while firmly holding to the boundaries of the treatment. I was never sure which pieces she was taking in, what might click later or resonate in unexpected ways; but I knew there was potential for impact with each interaction in ways I might not be aware of.
In contrast to the impotence and uncertainty many colleagues felt towards this young lady’s prospects of treatment success, I was confident that we could, and would, help her. There was no denying she was quite ill; but the notion that this was the fate of her life never crossed my mind. The raw ingredients for treatment success were clear; it was a matter of finding the right combination for her specific needs. I knew she’d been to half a dozen treatment centers in the last decade; in her acute medical and psychiatric state, identifying anything she’d held from prior treatments was nearly impossible. As I came to know her, it became clear that what she held onto were the relationships she’d formed—the hope and encouragement she’d given to peers served to keep her own hope alive and allowed her to persevere through times of great distress.
Her mother and father, dutiful parents, were exhausted from the decade-long battle they’d forged as a family to beat this illness. They were frustrated, beaten down, and angry, similar to their daughter in this way—they watched dozens of other young women recover from their eating disorders while she remained ill. They’d heard from experts across the country at some of the best treatment centers available; I sometimes felt nothing I could say or do could compare. I tried my hardest to be patient, to understand the journey they’d been on together, and the sense of helplessness they felt as they poured every resource they had into their only child.
Focusing on strengths
Together we focused on her strengths–her tenacity, resiliency, intelligence and wit–these qualities that held the potential to lift her from the darkness of her eating disorder and provide a light with which to breathe new air and passion. These were the qualities I, too, held on to as I held hope for my patient. We laughed together at the huge amount of food she was asked to eat while holding tightly that she needed to consume all of it; we cried together at the years lost to anorexia; we looked toward the future together, a future free from the shackles of the disease that had taken so much of her early life away.
Listing and hearing patients
Sitting with patients with complex psychiatric and medical issues is part of my daily practice as a child and adolescent psychiatrist. Uncertainty around diagnosis and treatment abounds in our field; without lab tests or fancy imaging studies to guide us, we’re left with the most powerful tool of all, patient narratives. And in those stories live fear, shame, resilience, tenacity and grit. It is in sitting with patients, in listening to their stories that their strengths become apparent. And in those strengths live hope, perhaps one of the most powerful things we can provide for our patients, especially when they are unable to hold hope for themselves.
Sitting with patients
Since my internship, I’ve sat with hundreds of patients across multiple settings—from the emergency room to the inpatient unit and outpatient clinic—I’ve held their hands while they cried and held back my own tears when they’ve released their rage at me. I’ve been the target of delusions and the idealized version of the parent so many of my patients lacked. I’ve seen patients through withdrawal from drugs and alcohol and been there as they’ve put their lives back together.
Science alone is not enough to heal
While there is certainly science behind that which I do every day, I would argue that the science alone is not enough to heal. When I sit with patients to diagnose or to treat, I am always holding hope, either alongside them or for them. Because that is something we, as physicians of any type, can always offer our patients—hope for a better, brighter tomorrow. Hope for freedom from pain. Hope for healing in body, mind and spirit. Holding hope has become one of the most important parts of my job. It allows me to connect with patients beyond their illness, beyond its treatment, beyond the borders of disease and beyond the label of doctor and patient.
Relationships with families
My patient from internship survived three more years with her eating disorder before tragically passing away. Not a day went by that I didn’t think about her during that time—wondering how she was doing, hoping she was finding her way through recovery. When her parents reached out to me following her death, I knew they could tell I had believed in their daughter’s strength and potential for recovery. I knew they could tell I had believed in their ability to persevere through anorexia as a family. I knew they could tell I had always held onto hope for her future.
Even in her death, her family was able to hold onto the relationships they’d formed with caregivers along the way. I carry forth with me her memory every day. Despite our lack of diagnostic clarity, labs and imaging to support us, we always have something to offer as physicians that is a true gift to patients and their families. We hold hope. We hold it when no one else does, when no one else can.
So, the next time you find yourself unsure of the diagnosis, questioning the treatment or just unsettled as to where you’re going with a particular patient, remember that you can always hold hope. Patients feel it, their families feel it and you as the physician feel it too.