Ariadne Labs Safe Surgery Research Fellow, Boston, MA
Beyond the invaluable lessons I learned through public health work, medical school, and my first few years of surgical training, my grandmother’s illness has had a profound impact on my understanding of medicine and health. Because of her illness, I see medicine through a new lens. I spent hours in her hospital rooms and our history transformed her beyond “just a patient.” In the three years since graduating from medical school, several classmates and dear friends have experienced personal or family illness as well. While no one would ever wish for such hardship, I believe we can unpack the core lessons that these experiences nurture and strive to incorporate the most salient features into all medical training.
My grandmother was 4 foot 8, born in the 1920’s in India, and did not graduate from high school. Yet, she was this towering presence of will power, intellect, grace, and unfathomable work ethic. She was the apple of her father’s eye, grew up and relocated to a new state/ culture/ language in her early twenties, expertly ran a household, was my grandfather’s partner in every way, raised my mother to be a confident and kind career woman, provided steadfast support to a tight knit circle of friends and family, tutored and mentored a host of students, and then, at the age of sixty, made a new home by moving across two oceans. She stayed and raised my younger brother and me with a firm hand and more love than words can express. She was the epitome of health for as long as I can remember. Then one summer, as I was working overseas, a phone call from my father spurred a distinctly new chapter. My father’s voice was unequivocal. My grandmother was having severe abdominal pain and trouble passing urine. She had been taken to the hospital immediately by my two physician parents. Within days she was diagnosed with bladder cancer and underwent surgery to remove the mass. The decision was made to attempt to preserve her bladder at this point. Coming to this decision among the plethora of surgical and medical treatment options was no easy task. This was in spite of the fact that my parents were both physicians, they worked at the same hospital where my grandmother received her treatment, and my grandmother was quite informed and involved in her care. However, there were other factors at play. In Indian society, talking about death is often considered “bad luck”. So there was this palpable familial reluctance to discuss worst case scenarios or ask the tough questions about goals of care should things not go according to plan, and a dearth of institutional support to promote these necessary discussions.
Luckily, given her lack of any other illnesses, she tolerated the surgery well and made it home shortly after. However, a few days later she made a turn for the worse. Upon returning to the hospital, it was clear that there had been a leak in the bladder as the mass had been removed and she was developing an abdominal infection. She was taken back to surgery to remove her entire bladder. This time she was weaker, nutritionally depleted, and the surgery was more complicated. She almost died twice, but thanks to valiant efforts from her operative team, she pulled through.
She ultimately came home and thanks to my parents’ diligence and a small cadre of home nurses and physical therapists, she was surrounded by a network of care. It was still an incredibly gradual and trying recovery. Then one night, when my mother and I were helping her back to bed, she made a little joke and we believed there had been some seemingly imperceptible but real shift. She progressed slowly but surely, regaining a daily routine and seeing her grandchildren achieve milestones that were so intrinsically tied to her. I graduated from medical school and my brother began a job at the U.S. Senate. I left for surgery residency a few months into this period of recovery and almost blissful stability. I was awash in tears to leave her. She remained resolute. She hugged me hard and smiled and waved till she disappeared in the rear view mirror. I will never be able to thank her enough for giving me the opportunity to experience again (even if fleetingly) that distinct feeling that permeated my youth; that even in times of uncertainty or change, things would be okay because my grandmother was there.
She died five months into my surgical internship. Bladder cancer is generally slow-growing and not prone to spread. However, given her initial surgery to remove part of her bladder and the subsequent leak, there was concern that tumor cells had been released and spread to her hip. In a matter of days, it seemed the cachexia or extreme muscle wasting of cancer set in. The fullness of her face completely disappeared and her limbs were rendered brittle. She slept for most of the day (and this, the fact that she could sleep, was a blessing). She died like she had lived – very much on her own terms. She was at home and surrounded by her family, favorite books, and listening to her oldest records. As one of my cousins reflected as we were sharing her last days, “The music stopped and she died.”
The experience with my grandmother’s illness and her subsequent death provided completely new scaffolding to my medical training. First, spending countless hours in her hospital room alerted me to the near dizzying host of doctors, nurses, students, social workers, physical therapists, custodial staff, and cafeteria workers (to name just a few) that come in and out of a patient’s room in any one day. They all mean well but at times provide very different information and recommendations that have no apparent coordination. The lack of any tangible record of who visits a patient and the similar lack of patient-friendly documentation regarding the medical plans for a patient on any given day seem to be the most fundamental of gaps. Second, my grandmother’s illness reaffirmed the importance of placing a patients in the greater context of their lives—the lives the patients live outside the hospital walls and beyond the present set of medical conditions faced. Third, it became apparent to me as my grandmother moved through the medical system that advocacy and support for family caregivers is fundamental, but often their views and needs can be forgotten. Lastly, as my grandmother’s illness progressed and end-of-life issues became of paramount importance, I was routinely struck by how critical cultural sensitivity was in these discussions and how we still have so far to come to make these discussions personalized, effective, and truly meaningful.
Empathy is often singled out as the vital component of compassionate medicine. However, in the frenzied state of training, I fear that it is easy to lose one’s empathetic touch. It is at these times in particular that lessons from my grandmother resonate the most with me. I try to slow down, deeply listen to the patient speaking to me, truly include the patient’s family, and strive to understand the individual problem or issue that unfolds in front of me in the greater context of a profound and complex human life. Achieving this for every patient encounter remains a daily challenge. But I am drawn to the following innovative aspects of medical training and practice as ways to further foster empathy:
- House calls to further understand the perspective of patients beyond just their medical disease. Incorporation of house calls into all levels of training could initially be focused on the following patients who tend to have multi-factorial problems: patients with multiple chronic co-morbidities requiring serious coordination within the health system, patients following surgery, and patients at the end of life.
- Communication training for doctors having difficult conversations with patients and their families. The trainings could focus on (but not be limited to) delivery of new diagnoses with poor prognoses and the discussion of end of life care/goals of care. Harnessing the resources of local Palliative Care departments and ensuring that this training is integrated into both medical school and residency training would be ideal. For it is during residency when doctors first start taking responsibility for these discussions and could truly benefit from additional support.
- Longitudinal following of patients through their hospital course to better understand the dynamic factors that affect the patient experience in the health care system. Medical students would ideally be able to follow certain patients with chronic or long-term medical needs through the course of their work-up, diagnosis, treatment, and any unexpected hospitalizations.
- Forums for doctors who are experiencing personal or family illness to generate discussions regarding their impressions of the medical system through a new vantage point, foster collaboration between medical fields, and provide peer support.
My experiences challenge me to think about how our medical training can generate an improved and pervasive sense of empathy, without all doctors in-training experiencing a personal or family illness. The models above are inspiring but are just the beginning. As our population ages, the complexity of medicine expands exponentially, and the burden of chronic diseases grows. I am energized and humbled by the new challenges we will face. Within this context, it will be crucial for doctors to view their patients beyond their diagnosis, communicate effectively on difficult issues, engage patient’s families in meaningful ways, and strive to provide the sort of empathetic and personalized care that we would all want for ourselves and our loved ones.
JANAKA LAGOO is a physician involved in global health and capacity building in resource-poor settings (both domestically and abroad). She received a B.A. from University of North Carolina-Chapel Hill and a M.D. from Duke University. She has worked with Teach for America and the World Health Organization. She is currently a Safe Surgery research fellow at Ariadne Labs (a health innovations collaboration between the Harvard T.H. Chan School of Public Health and the Brigham and Women’s Hospital).