By JaBaris Swain, MD MPH
It was probably the most awkward question I had been asked before, and I did not have an answer…
He was a middle-aged gentleman, neatly dressed—very simple and unassuming. He blended like a lifeless statue in the waiting area. What sparked my notice of him was his accompanying robust file, crammed with familiar pink discharge slips from the ED. He was clearly what we call a “frequent flyer”, but this would be his first visit in our surgical clinic.
I escorted him into the assessment room, exchanging the usual salutations as he edged unto the exam table, wincing with discomfort. His chief complaint read, “acute abdominal pain and constipation x 1 week.”
Vying to understand more about his issue, I asked, “Sir, how long have you had this problem?” Embarrassed, he lowered his head.
I retreated and instead remarked, “Ok. Let’s start from today. Where do you have the most pain?”
Tenderly, his frail digits unbuttoned his shirt, exposing a wasted torso, which hoisted an extraordinarily distended abdomen. It appeared rigid and tense. I reached out to gently palpate it to confirm the realism of my observations. He flinched. His stoic affect instantly collapsed into an aching frown. Tears welled in his eyes. Something terrible was going on inside. Cancer.
He needed to be admitted and surgery would be very likely, if not too late. I was aplomb in my explanation of his condition, feeling proud of my thoroughness and precision. Yet, seemingly unengaged, he politely interrupted and asked, “How much will it cost to let me die?”
I paused. It was probably the most awkward question I had been asked before, and I did not have an answer. During my training, I was taught to order tests wisely, to avoid superfluous exams and to minimize inefficiency of resources; in spite of this, I had not ever stopped to think about cost in this context. In my mind, it was my duty to provide the best, quality care to extend life, foremost. Yet, his concern was different. How much would it cost to die?
Puzzled, my instincts led me toward urging him to reconsider, but he would not budge. As we talked further, I learned that he was unemployed, usurped from his job by a layoff; and his wife earned only a modest salary. His question was valid and real. I was helpless.
Importantly, this gentleman made me pause to realize that as physicians, it is well within our purview to be mindful of costs and to think beyond pushing the envelop of life as far as it will allow when prescribing care. This gentleman represented just one of many who enter our health care system daily in advanced stages of disease—helpless, insolvent, unwary, and not prepared to face the raging costs of fundamental care. Rather than be overwhelmed with this burden, they would prefer to die. Remarkable.
Dr. Martin Luther King, Jr. captured the sentiment best in 1966 when he said, “Of all the forms of inequality, injustice in health is the most shocking and inhumane.”
Indeed, supporting a health care infrastructure where only a minority of individuals can independently negotiate the associated costs is an injustice in equity in its highest form, and it is an inhumane injustice that calls for our immediate attention. My colleagues and I must now assume the role of health care advocates and enter the discourse of public policy in efforts to better inform the decisions that impact the practice and cost of medicine. We are charged with this task beyond our will, but it is a task, which we must confront with fervent tenacity. In no uncertain terms can we any longer accept complacency on the issues that affect our patients and the way we provide care, including its cost!
Nevertheless, until the opportunity of real, indelible change arises, we shall all one day be indebted with the harsh reality of justifying the questionable benefit gained from the care we provide against the guaranteed financial burden.
In this instance, I failed.
The gentleman politely repositioned his shirt and declined care. The nurse practitioner gave him a script for an enema twice daily, and I never saw him again.
JaBaris Swain, MD MPH is currently completing 1 year abroad in Rwanda studying outcomes of cardiac surgery in resource limited settings and the cost-effectiveness of cardiac interventions. He is a Surgical Resident at Brigham and Women’s Hospital and a Global Health Equity Resident in Surgery at the Center for Surgery and Public Health at Brigham and Women’s Hospital-Harvard Medical School. He is a winner of the 2013 Costs of Care Essay Contest