The Greatest Lessons I’ve Learned as a Lifelong Patient Doctor
All too often, I struggle to remember what it was like to walk. I try to recall the burning of lactic acid in my legs after a run, the sore soles of my feet after standing all morning during rounds, or the graceful flight of surfing on the crest of a wave.
When I broke my back five years ago at the age of 26, my body was left in two parts — the part that does what I want it to do when I want to move or feel, and that other part that is still attached to me but does not feel or do…anything. Since then, I’ve sat in a small metal chair with wheels, using my upper body to push the rest of myself around. A wheelchair was not part of my self-image as a third-year medical student, when my life changed forever after a hiking accident that left me with a spinal cord injury and paralysis from the waist down. Nevertheless, living in two halves has made me more whole, and it has certainly made me a patient doctor.
Having spoken with patients who have suffered traumatic spinal cord injury, it is evidently not uncommon to lose recollection of the exact circumstances surrounding the accidents and injuries that changed their lives. Even so, all of us recall the long days of rehabilitation, weeks spent between various hospital beds, and months wondering whether we will ever feel the way we used to feel or move the way we used to. For some, this process leads to recovery, but most (myself included) suffer from some combination of paralysis, neuropathic pain, and general medical sequelae. Our patient years pass by, and we come to see ourselves in a completely different way. New people enter our lives who never knew us as ‘able-bodied’ individuals who once stood upright and walked. Being a patient is an inescapable, conspicuous part of life.
At first, I refused to see myself as a patient. There were far too many connotations of disability attached to being a patient; I was concerned only with the fight to walk again, the years of rehabilitation ahead. Moreover, I was training to become a doctor like any other — immune to illness, able to think tirelessly, capable of persevering my way through others’ problems of body and mind. Certainly, I could have no such medical problems of my own.
In recent years, our growing understanding of physician burnout has debunked this mythical figure of the doctor who is immune to the perils she treats. Albeit a mere figment of my misunderstanding, this image toward which I was training only distracted me from the truth — medicine is the most sacred calling that suffers from so many solvable problems.
Accepting definition as a lifelong patient offered me some of the greatest lessons in becoming a doctor:
1) As diagnosticians, we sometimes focus on the complexity of healthcare’s many problems at the expense of addressing the single, simplest problem: patients are often unsatisfied with their care.
Frontline clinicians have the most profound effect on patients’ satisfaction not only by offering them excellent care but also by advocating on their behalf by becoming leaders of healthcare institutions both within healthcare delivery and at its periphery.
2) Most health decisions happen outside of the hospital or clinic. It is absurd for us to ask our patients to focus on health without empowering them after they’ve left our clinics.
As providers of care, we are tasked with thinking critically about the timeliness of our interventions. The fact that we work in hospitals and clinics does not mean that most care must happen in our temples. In training and practice, we should experiment with new models of care delivery to offer convenience, be it personally or electronically.
3) For physicians, the healthcare system suffices. For patients, it often disempowers.
When we think of designing our healthcare delivery organizations, it is crucial to include patients in our definition of care team. Designing a team around a patient is different than designing an organization that includes patients in its teams. Including patients in clinical teams can yield perspective on common frustrations or obstacles to accessing care that clinicians may overlook.
4) Doctors and patients similarly bemoan our healthcare’s many problems, and they quickly blame one another for its shortcomings.
The hardest task is the same for patients and doctors — being a good patient or doctor. As we approximate this goal, we can give one another the benefit of understanding that “trying” to be a good patient is difficult when no one wants to become a patient.
5) Diversity of healthcare’s leadership makes us more like the communities we serve.
During the time I spent as an inpatient immediately following my spinal cord injury — after two spinal fusions, a jaw reconstruction, several emotional disintegrations, and large doses of hospital-induced delirium — I learned the most from doctors, nurses, physical therapists, and medical assistants who were comfortable with and understanding of the fact that I now saw myself as different from what I had been before. Spinal cord injury had left me with paraplegia, but it was this difference in identity that would ail me the most over the coming months. Those providers who welcomed and celebrated the difference made me whole again.
In general, we could use a more-balanced embrace of difference in medicine. Specifically, we could find value in the subtle difference between being a patient learning from a doctor and being a doctor learning as a patient. This will make for good, patient doctors.
