Restoring coherence amid uncertainty
Submitted by Ronald Epstein, M.D.
A couple of months ago I was awakened with abdominal pain. I couldn’t sleep. The pain was unfamiliar, different from my prior kidney stones. It was more in the front of my abdomen, not the side; it didn’t wax and wane.
The pain got worse and my wife drove me to the emergency room. As a doctor who is no stranger to the emergency room as a patient, I took the opportunity to note the quality of attention I received from each person I encountered, and the degree to which they were present, seemed interested in me as a person and expressed caring.
The first thing I learned is that attentive presence has nothing to do with role. The clerk at the front desk first asked for my name, date of birth and insurance information; he made eye contact with a knowing look. That look made me feel more attended to, even before he said he’d get me seen right away. The person who transported me in a stretcher to the CT scanner asked how I was doing and she seemed interested in the answer. Both the clerk and the transporter were part of the healing enterprise. On the other hand, the tech, obviously harried, took my blood pressure without sharing any of her presence. I found her lack of presence disruptive; for her I was merely a task to be completed, not a person to be known. It was disruptive to a fragile sense of coherence in a moment of vulnerability. The same blood pressure check with some expression of human connection would have been more healing, less jarring.
For those who were engaged with me as a suffering person, I encountered different types of responses during my short stay. Some were interested in fixing my problem. Dr L, who attended me, did not waste any time getting me medicine for the pain and nausea. The pain resolved quickly and after a while I felt less nauseous. But it wasn’t just the pain and the nausea; there was more. I was worried. He inquired. Perhaps, he said, we should wait to see what the blood and urine tests show before ordering a CT scan. That could save you an unnecessary test and some radiation exposure if you really don’t need it. I agreed. More importantly, I was part of the plan, part of a collective effort to make sense of this unexpected event. Later, tests unrevealing, he explained, Would be an hour to drink the contrast solution slowly, and another hour to get the interpretation after the scan, and then we’ll see. I wanted to know why I was having pain and agreed to the scan. I didn’t get the sense that he was treating me specially because I’m also a doctor. He addressed me as a person first, a patient second. He communicated his interest in me as well as the illness, that he’d accompany me along the way, that I’d have a say.
There was a lot of waiting, first, to drink the contrast solution, then get the scan, then wait for the result. Then, a surprise. Not another kidney stone (I knew that), not diverticulitis (the ED doc thought it would be). The scan showed some thickening of the stomach lining, probably an ulcer, he said. Could be gastritis, could be an ulcer, could be something else, he said. In retrospect, I realize that he was preparing me for something, treading softly. The report from the radiologist said, possible infiltrative process, he said. I did not like the sound of that. I imagine that if I wasn’t a doctor he would have explained that he needed to make sure it wasn’t cancer. Now we were both in uncertain terrain. The pain gone, I felt fixed in a physical sense, but I was far from back to normal. I was anxious. Dr L suggested a call to GI, an endoscopy. No alcohol were his parting words.
Illness is a disruption of what we take for granted. Bodies hum along quietly, out of awareness, then “something” happens. For those who are relatively healthy, that something, fortunately, is an exceptional occurrence. For those who are chronically and seriously ill, some somethings are part of the fabric of life. However trivial or monumental a something might be, the resulting disruption is physical, psychological and existential; we experience it as suffering. Physicians normally respond to suffering by trying to fix a problem, to diagnose and treat, to remove the threat. But often the threat cannot be removed completely. There is a residual, a fear, a not-knowing. With the advances in CT and MRI scanners and ultrasound, it is now possible to see in ever more exquisite detail what previously would have evaded detection – usually a good thing, but this increased precision comes at the price of finding more lumps and bumps that are meaningless, harmless. Increasingly, we all become acquainted with these “guests” — who reside in our livers, our kidneys, our brains — and try to determine if they are innocent or nefarious.
I had entered that field of uncertainty, together with Dr L. In few words, he communicated that he wasn’t confusing the prescribing of treatment with the relief of suffering. Presence makes suffering tolerable, less disruptive. Presence can restore a sense of coherence. Even transient illnesses involve a sense of loss or threat, but in more serious, chronic or life-threatening illnesses that sense of loss can become so wrapped up with a person’s identity that they feel that they’re no longer whole. Helping patients reclaim their identity – that which defines who they are as a person regardless of the ravages of disease – is essential when patients are seriously or terminally ill, but it can be just as important at other times. Whatever transpires, whatever the diagnosis, and whatever uncertainties remain, physicians can support the integrity of the person. For patients whose illnesses don’t go away, sometimes the most important thing a doctor can to is to let them know that she is there not only to solve a problem but to help them discover that illness does not have to diminish them.
For me, in those few minutes in which the uncertainty about diagnosis emerged, Dr L was able to give me choices and help me be in control, at least to some degree. What transpired the next day – the endoscopy – suggested something benign but unusual-looking. A week later, Dr K, the endoscopist, called with the biopsy result. Here was another opportunity to address the person and the patient. It was certainly benign, he said, but some uncertainty remained whether the inflammation was acute or chronic. I felt fine. I opted out of another endoscopy, offered “just to make sure.” I knew better. Often more tests muddy things as much they clarify. The kind of reassurance I was looking for was knowing that I’d be accompanied, and that’s what I had.
It’s strange to write about a health care episode that went well. There’s so much wrong with health care. But patients know when health care is about people first then diseases. They feel seen, recognized, accompanied. It doesn’t take much. A quality of gaze, a warm inflection of speech, a momentary pause. Words that bring us together, human to human, rather than words that create distance. Gestures to honor a wholeness that would otherwise remain unseen.
Dr Epstein is a professor of Family Medicine, Psychiatry, Oncology and Medicine and Director of the Center for Communication and Disparities Research at the University of Rochester School of Medicine and Dentistry. His book, Attending: Medicine, Mindfulness and Humanity (Scribner, 2017), will be released in January 2017.
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