“When I was first diagnosed, I felt I didn’t need you,” she said. “After all, I am a nurse. I know how to get what I need in the medical system. I speak their language. Now I find that I need your help.”
I recall having met with her at the time of diagnosis. It’s over a year later so I remind her of my role of medical humanist on the cancer care team, explaining that I document a patient’s understanding of their diagnosis, prognosis, treatment plan and how illness is impacting their life. And, that my note offers doctors the patient’s perspective, which can help address questions, concerns and what may have been misunderstood at the office visit.
She informs me that she has already consulted with two of four doctors at the cancer center in Bennington and traveled to Memorial Sloan Kettering in New York, Fletcher Allen Health Care in Burlington, Albany Medical Center and Dartmouth-Hitchcock in New Hampshire to seek opinions from other oncologists. She has been in contact with an alternative practitioner in Germany who is recommending the embolization of her pancreas as a promise for a cure. I don’t ask why she doesn’t want to see any of these doctors again. She tells me that they have given up and abandoned her. Now she wonders if one of the other oncologists in the Bennington practice could be the right fit.
“What are you looking for from a doctor?” I ask.
She pointedly tells me, “I want a doctor to be able to say that you have a shitty disease and you were handed a crappy deal but I am not going to give up on you. I look at you and see a woman who is very much alive now. I want a doctor to tell me, ‘“I know and you know, after all you are a nurse, what the statistics say and yet there are the outliers.”’ I want a doctor to tell me I can be an outlier and will stand with me at the edge of a cliff—ready to jump and discover with me that we’re flying or to find it’s only a 3 foot drop.”
Her request reminds me of Anatole Broyard’s words from “The Patient Examines the Doctor,” a chapter in his book Intoxicated by My Illness.
“Not every patient can be saved, but his illness can be eased by the way the doctor responds to him—and in responding to him the doctor may save himself… It may be necessary to give up some of his authority in exchange for his humanity, but as the old family doctor knew, this is not a bad bargain. In learning to talk to his patients, the doctor may talk himself back into loving his work. He has little to lose and everything to gain by letting the sick man into his heart. If he does, he can share as few others can, the wonder, terror, and exaltation of being on the edge of being, between the natural and the supernatural.”
She goes on to explain, “I am not asking my doctor to believe in unconventional treatments—just join me in my all out effort to save my life. I need a doctor who will keep their eyes and ears open for the most up to date treatments in pancreatic cancer. This is my life we’re talking about. I am a photographer…I will stand at a distance and use long-shot to capture the depth of field.”
She pauses and then leans forward to say, “What I want is a doctor who will go the distance with me.”
I finish transcribing her words and tell her that I will hand deliver my note to one of the other oncologists. “Hopefully,” I say, “she can be the doctor you’re looking for.”
Celia, Excellent, thank you so much – and the Broyard quote (I hadn’t read his book in years) is so relevant my Literature & Medicine class, which I am of course teaching remotely up here in black and gold autumnal Vermont.
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