On my very first week as a neurology resident, I received a page to head down to the ER to evaluate a young woman with a headache. I didn’t know it at the time, but this routine consult would yield a profound learning in my journey to understand the role of mercy in my medical practice.
The patient was 19 years old and looked perfectly healthy upon first glance. From my view outside the door, I figured she would be fine after a migraine medicine “cocktail”. She was upbeat, bright, warm. When she began to tell me that her headache was worse when lying down, and that she had developed nausea and double vision, I started to worry that the cause of her headache may be more serious. She shared how she felt perfectly fine but that her overprotective father had dragged her into the ER because he noticed his daughter had been walking strangely. When I examined her, I saw multiple abnormalities: bulging optic discs, difficulty with right lateral gaze, and an unsteady gait. I tried to keep my face neutral when I told her I would order an MRI, hoping that my worst fears were unfounded.
I ran upstairs to review the results with my senior resident, who pointed at the cancerous-appearing lesion in her brainstem leading to hydrocephalus, increasing “water on the brain”. When we shared the news about the imaging findings, she took a long deep breath and held it. Without missing a beat, she turned to her dad and began to comfort him. We arranged expert care with the neuro-oncology team, who started her on treatment soon after. I was able to see her a few months later, while rotating through the neuro-oncology clinic. She was using a cane and had developed multiple palsies in the nerves of her head and neck (cranial neuropathies). It was painful to see how much she had progressed in just a few months. I felt like a powerless observer, but was struck by impact of the neuro-oncologist’s explanations to the patient and her family. I saw how the neurologist could comfort them even as she was unable to stop the disease. I saw the patient again while working an overnight shift at Ronald Reagan UCLA Medical Center. A page came through from the ED at around 1:00am with her name on it. My heart sank. I scanned the ED nurses’ notes for details and saw that she had been brought in by her dad because her symptoms had drastically worsened. She was unable to stand, was speaking very little, and had developed difficulty swallowing her own oral secretions. For a moment I wondered how I could go downstairs and face her and her father. How could we have not protected this radiant young woman from this fate? I felt a sadness so sharp and deep that I wasn’t sure how I could go through the motions necessary to examine and admit the patient. But I knew I had to suppress my own need to mourn in that moment, to do what is paramount in medicine: serve the patient. TS Elliot’s line, “teach us to care and not to care”, articulates that fine balance necessary to do this work. The emotional engagement is a vital component of being a physician, and the ability to keep distance enough to work through tragic moments is equally necessary. Mercy requires both.
I was drawn to neurology because of the particular compassion that is required. Our patients suffer from diseases which take so much from them. Many lose their physical independence, their ability to communicate, their memories — the very fabric of their humanity and individuality. So much of our job in this field extends beyond the interpretation of diagnostic tests and the ordering of medications. The challenge of communicating with compassion to a family or patient experiencing profound loss is what makes neurology so heart-wrenching but also so fulfilling. The individuals experiencing this type of earth shattering loss have taught me that even in cases where I feel powerless at the lack of available interventions, words are a type of medicine. I’ve learned that solace is something we provide through prescribing and diagnosing but also through listening and sharing.
This year I am exploring these topics through medical education curricula and writing. I am working with the palliative care team on developing formal teaching experiences for our neurology residency program. I recently submitted a book chapter on end of life care for stroke patients with a former neurology resident (and a current neuro-palliative care physician). We are developing a resident training simulation program with stroke physicians to improve resident communication with patients and families after massive strokes. We plan to extend this program to other neurological disease. I am also working on a nationwide palliative training program for practitioners caring for patients with multiple sclerosis.
Every physician carries memories of patients that they will never forget. For me, those are the patients who taught me that relief of suffering can be provided through educating a patient about their disease, and, most importantly, sincerely listening to the patient’s personal experience. It is this human connection as a component of healing that challenges and interests me most and it is how I bring mercy to my medical practice.
Cara Siegel is a neurology resident in her third year of residency. She was awarded the prestigious Excellence in Teaching with Humanism Award from the David Geffen School of Medicine. She is interested in an emerging field of neuro-palliative care in Neurology.