What Happens When Doctors Don’t Know the Answer?

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One of the most difficult discussions physicians have with patients occurs when a doctor can’t find the root of a sickness — when, despite our best efforts, we’re left stumped. Perhaps even more challenging is determining what to say if all treatments fail.

Why, for example, do kids suffer from cancer? When a mother grieves as she watches her child succumb to a slow death from leukemia, what can I tell her?

As a physician who practices within the limits of science, the best reason I can offer is what scientific medicine provides. To the distressed parent, the mortality statistics may come across as a dispassionate rundown of clinical realities. I might say that perhaps leukemia is the result of an inherited genetic mutation, passed on unwittingly from parent to child. But this explanation doesn’t do anything to ease the guilt that a parent feels when a child is incurably ill. I can give nothing to this mother to console her heart.

Parents often think that, somehow, they’re responsible for their child’s illness, but in actuality these cancers (or other diseases) would have occurred no matter what. Even if we do narrow down what causes these genetic aberrations, we still fall short of explaining why kids have to suffer from these often fatal illnesses in the first place.

We might also ask why the immune system sometimes attacks our own tissues to cause rheumatoid arthritis, diabetes, lupus, or multiple sclerosis.

When we’re faced with difficult situations, such as when we or someone we love is suffering from an incurable illness, we sometimes find ourselves caught up in a why me? or why them? line of thinking. These questions are common, but for medical professionals, they’re among the most difficult to answer.

It’s a sense of injustice that drives patients to wonder why they’ve been handed a particular diagnosis. It’s our nature to seek answers and to rationalize random misfortune with sentimental interpretations. These ideas are instilled in us by our religions and our cultures. We may not be the same people as our ancestors, but some of their beliefs are forever locked into our psyches. We’re shaped by the accumulated wisdom, practices, traditions, and cultures of those who lived before us. These familiar beliefs and pervasive practices have left an indelible mark, both in our minds and on our DNA.

Whether or not we seek answers from a philosophical scholar or a priest, many of us do search high and low for a personal confidant in our physician. For certain health problems, there’s no manual that gives us the right answer. To embrace uncertainty, we need an understanding, an explanation, and — more than anything — a reassurance of a meaningful life. Those who are terminally ill may yearn for a touch of metaphysics, a narrative that has nothing to do with what science offers. To cope with death, we sometimes need a story that connects us with eternity.

For a patient, medical professionals are a critical line of defense, and this means we may also share a disproportionate burden of responsibility for a patient’s outcome. Yet in the modern patient-physician encounter, most doctors have found ways to use medical science to track genetic mutations; edit our genes; and forecast, treat, cure, and prevent diseases from occurring, but there’s no provision to answer the sublime questions of those who are suffering.

One inadequacy of modern medical science is that it’s perceived by some as unemotional and rigid. But this mechanical approach is the very thing that provided the field of medicine and biology with a set of tools for methodical investigation and for a new, self-assured identity. It took nearly three centuries to systematically eliminate doctrinism from the medical profession. The doctor, by necessity, became a scientist, and the study of medicine in turn became mechanistic. It is this culture of medicine that takes the center seat in patient-physician interactions.

The physician is now challenged with looking at the human body for what it is — a dynamic interplay of many known and unknown variables — while providing care that’s individualized with you in mind.

Excessive specialization, a mechanistic outlook, and consumerism (including patients’ expectations that they ought to be treated as consumers) were all necessary compromises medical professionals had to make in order for the system to run as it needed to. But this shouldn’t give modern physicians permission to undermine the existential crises each patient faces when suffering from an illness.

Ancient healers left many gaps to fill, but to advance our understanding of ourselves doesn’t always mean that what existed before must be completely destroyed. As physicians in modern day, we routinely underinvest in our patients’ narratives because of the seemingly impenetrable constraints of the modern medical establishment. Vivid, memorable interactions with patients — even if only in the form of a fleeting conversation — remain a critically important part of their care.

We all have stories to tell. The emotions, feelings, and actions that make up our individual narratives have effects, directly or indirectly, on our physical and mental health. For each of us, our life story conceals within it the innumerable threads that weave together our mind and body. As we live these stories, a few pervasive habits can wreak havoc of our health. By revisiting an individual’s narrative, a physician sometimes has the power to rewrite harmful patterns for a new beginning in a better, happier story.

To harness this ability, a physician must encompass certain attributes of the ancient healer, while at the same time differentiating as a specialized individual who can deal with the enormity of caring for human life. We’re tasked with carrying forward the timeless principles of the profession: To cure as often we can, to relieve when we cannot cure, and, always, to comfort.

This piece is an excerpt from Physician: How Science Transformed the Art of Medicine.

Dr. Kurapati is a physician at St. Elizabeth Healthcare in Northern Kentucky (a member of the Mayo Clinic Network). He is the author of Physician: How Science Transformed the Art of Medicine and has written for Slate and Smart Health Today, among other outlets. He is also a lecturer and winner of a 2014 National Indie Excellence Award for his first book, Unbound Intelligence. Learn more at rajeevkurapati.com.

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