Miriam Quinlan is a clinical fellow in the Johns Hopkins neurocritical care fellowship program, the president/chair of the Johns Hopkins Clinical Fellows Council, and a member of the Johns Hopkins Ethics Committee. She is passionate about advocacy and serves on the executive committee of the American Academy of Neurology’s political action committee, BrainPAC. She is multilingual and enjoys advocating for and interacting with her patients and their families.
In the neurocritical care unit, patients are often defined by the immediacy and severity of their medical conditions. Diagnoses, lab results and imaging studies can almost overshadow the essence of the individual. However, my experience with a remarkable patient — a 30-year-old pregnant woman diagnosed with Guillain-Barré Syndrome (GBS) — taught me the profound importance of knowing a patient as a person, not just as a collection of clinical challenges.
When she was first admitted, she was still able to speak, though her voice carried the tremors of uncertainty. Amid discussions of her rapidly progressing weakness and the potential for respiratory failure, she mentioned, almost casually, her interest in American Sign Language (ASL) and how she knew a few signs. Her curiosity about a language centered on expression without words resonated deeply with me, and I obviously felt the same way as throughout my career, I have studied ASL. Though I had never considered incorporating it into my clinical interactions, I offered to practice with her and teach her a few signs. It was a small, almost instinctive gesture, but it became the foundation of our connection.
Her clinical course was harrowing. GBS, in its cruel unpredictability, spiraled into dysautonomia, severe dysphagia and respiratory failure that necessitated intubation. As the weeks passed, she became entirely dependent on a ventilator, her muscles too weak to carry out even the smallest movements. Yet, despite the profound physical limitations, the light of her personality persisted. She was unable to speak, but she still communicated, and she did so meaningfully.
When I visited her in the unit, she used the few ASL signs we had practiced. With trembling fingers, she formed words — asking questions, expressing gratitude and even sharing her fears. Those moments felt sacred, a reminder that beneath the tubes and monitors, she was still herself — a soon-to-be mother, a lover of languages, a vibrant soul enduring unimaginable hardship. I saw her as more than her diagnosis, and she saw me not just as a physician but as someone who had taken the time to meet her on her terms.
Her stay in the neuro intensive care unit (ICU) spanned most of her pregnancy. It was a long, arduous journey marked by incremental victories and persistent setbacks. Yet, her resilience and the growing life within her served as a testament to the strength of the human spirit. When she finally transitioned to rehabilitation, her discharge felt like a collective triumph.
After her ICU course, I still followed her in clinic. Her child, by then a healthy and inquisitive toddler, was learning baby signs, a poignant continuation of the connection that we forged. Watching her interact with her child, I was reminded of how communication, even in its simplest forms, can transcend the barriers imposed by illness. She credits our early ASL lessons with helping her maintain a sense of autonomy and humanity during her darkest days. For me, as a physician, it reaffirmed the power of finding a shared language, whether verbal or nonverbal, to anchor patients amid the chaos of critical illness.
This experience has deeply influenced my approach to neurocritical care. In a field in which communication is often impaired, and patients are frequently sedated or intubated, the challenge of understanding their needs becomes paramount. Sign language, with its capacity to bridge gaps in communication, has proved invaluable. Beyond the technical skills and clinical expertise required in this field, the ability to connect with patients as people — through shared understanding and small, meaningful gestures — defines the essence of my practice.
As I reflect on this remarkable young woman, I am reminded that neurocritical care is as much about the art of human connection as it is about the neurologic science of saving lives. Efforts to understand patients as individuals — through their interests, fears and unique ways of communicating — bring a sense of dignity to their care. It is a lesson I carry with me every day, one that solidified my resolve to pursue this challenging but profoundly rewarding field. Through experiences like hers, I am continually inspired to not only treat an illness but to honor the person behind it.
The patient provided written informed consent for publication of this essay.
Personomics: Knowing Each Patient As a Person
“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” – Sir William Osler
Personomics is a blog series featuring essays from residents and clinical fellows about their experiences knowing each patient as a person. The term personomics recognizes that understanding the unique attributes and life experiences of each person and the environmental, cultural, behavioral and economic factors that influence an individual’s life are as important to patient care as genomics, proteomics, pharmacogenomics and other “–omics.” Practicing personomics makes patients feel cared for and heard; provides critical information that helps establish a diagnosis and tailor a patient’s treatment plan to the individual; and allows physicians to derive greater meaning from their work, serving as an antidote to burnout and improving well-being.
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