The old woman with long silver hair sat in her wheelchair, feet propped slightly up, smiling toothless among her layers of wrinkles. She waited for me to speak, deferring her decades of matriarchy and adulthood to the stethoscope I wore so casually after just months of earnest experience. Indeed, it sat lightly on my neck today but heavily on my heart. A few more seconds passed, as I contemplated how exactly I wanted to discuss her test results and how exactly I would ask her to proceed.
Of course, the results were as clear to interpret as they were vague to follow up on. She had numerous ambiguous clues that might hint, at worst, at underlying malignancy, and at best, at underlying autoimmune disease. In my discussion with my physician supervisors over the days and weeks before, I had rapidly encountered an uncomfortable convergence of thought process. The woman had exceeded the typical life expectancy with a list of severe comorbidities which were balanced very uncertainly on the brink of disaster, and most thought it reasonable to encourage the patient to not pursue an aggressive workup; some even thought to encourage the patient to pursue no further testing. She wasn’t necessarily symptomatic right now, and if she were to become symptomatic from this particular diagnosis, she probably wouldn’t lose too much quality of life over it. She already had very limited mobility, faced daily aches and pains, took numerous medications and had more than a trace of cognitive impairment. Objectively speaking, a very limited workup would be the “right” thing to do, and no workup would not be the “wrong” thing to do.
Maybe I could have been more objective, but her laughter reminded me of my grandmother. Her colorful stories made me smile. I loved this woman as a patient, as a person. So, I explained everything to her, in excruciating detail, and I laid out all the options. I wanted to do my best to give her complete patient autonomy, to find out exactly her wishes and to help her achieve those goals. It would have been easy to downplay the potential seriousness of her results — to recommend that we follow them over time rather than pursue any definitive diagnostic testing and referrals at this time. Often, subtle or even glaring changes in the way physicians convey messages and guide conversation can vastly influence patient decisions.
Every day, little decisions and revision in what we say challenge the idea of patient autonomy. My dear patient responded to my nuanced explanation with a question I am now never surprised to hear. “What do you think I should do?” Asked with such underserved trust and expectation, this question in its various formulations is sometimes almost exactly what I like to hear, what I imagine most medical providers find a validation of their training and hard work. In each patient-physician interaction there is little time to consider how easily we violate patient autonomy, but each interaction on routine matters does provide a microcosm of experience to reflect on and learn from. The practical applications of the values we hold as doctors must come first in seemingly invisible but indivisible everyday matters before we even start to consider the conspicuous issues which define professional controversies of our time.
For instance, in my patient asking me what to do and giving me the authority to decide, I thought most immediately about the medical outcomes. However, since medicine is an art in addition to a science, I weigh the uncertainty of the clinical data with the diversity of my clinical experiences and the variance inherent in my individual patient. Maybe in an older woman with multiple comorbidities, I should recommend that we do the minimum. Yet, I wanted to recommend more. Ultimately, I told her we are worried about malignancy and that we should go ahead and do some preliminary testing, square away her other problems and even start referrals to some specialists who could address specific concerns. I knew why I elected to be a little more aggressive than on average, and it’s because I couldn’t help but be personally concerned about a patient I generally like to see and especially one who reminded me of a family member. Undoubtedly, if it was my own family member, I would do the same and not downplay the possibility of cancer.
In another sense though, it may also have been the wrong thing to do. Beyond the interpersonal decision making and the power dynamics at play in a single clinical instant, the culmination of many such encounters has real consequences for society as a whole. Each referral, procedure and lab test I send my patient for costs not only money, but in many cases decreases the ability of another patient to access that service. Perhaps because of the inability of the US health care system to address rationing of care, care is very unevenly distributed and maybe unfairly. In the absence of regulation the de facto principle of care organization is first-come, first-serve. Once all the clinic spots and testing slots are filled for the day, future patients must wait. And, so in some cases, urgent evaluations becomes emergency crises, thus taxing our legitimately misused and overutilized emergency care system. By refusing to properly allocate access to care based on rational and moral principles in order to avoid the political and ethical debate of fairness and value, the prevailing features of care distribution could perhaps be considered unfair.
In the particular case of my patient, I did feel some guilt for being particularly cautious because I liked her. However, what worries me most is actually the opposite scenario, the fear of being callous when I do not like the patient. And, indeed, there are patients I do not like for various reasons, like those who exhibit a certain quality of rudeness or resistance to reasonable dialogue or just plain disrespect. But, I am not afraid to admit these emotions, for reflecting on these feelings and facing the reality that reactions to certain patients are not always ideal may actually encourage care that is fairer. Being ethical and making fair decisions can be quite difficult when doing the right thing is more difficult in certain emotional states. For me, at least, knowing how I feel emotionally about a particular patient and acknowledging those sentiments allows me to make my unconscious biases more conscious and attentively avoid its inherent pitfalls.
The old woman with long silver hair waited as I spoke again and explained the ambiguous conclusion of the many tests she had gone through, with some normal and some falling in that gray zone of interpretation but none definitive enough to explain anything in particular. She probably did not have a malignancy, at least not any of the ones we particularly had looked for, and maybe she had nothing. I did not know what was worse, knowing that the worst outcomes were unlikely or that many bad outcomes were still somewhat likely. So, we discussed options, and then sat there, looking at each other, until she asked again, “What do you think I should do?”
Contributing Writer Emeritus
Yale School of Medicine
Lorenzo R. Sewanan grew up in Paramaribo, Suriname, and moved to Queens, New York, when he was sixteen. After graduating from Trinity College in physics and in engineering, he enrolled in Yale School of Medicine as an MD/PhD student. As a child he used to invent worlds of imagination, and now, he wants to bring inner worlds, his and others, to papers and words.