“In illness…words give out their scent… at last we grasp the meaning, it is all having come to us sensually first, by way of the palate and the nostril…”
Virginia Woolf, “On Being Ill” (1930)
Taped to my telephone receiver is a message. Under ‘reason for call’, the word “Urgent” is checked. I dial the 4-digit hospital extension, which connects me to a nurse’s station. I hear a voice answer “East Wing,” which I know to be the floor where oncology patients are admitted and, at times, serves as a respite for end of life care when home is not an option.
I tell the voice on the other end of my name and that I received a message to call. “Oh,” she says. “Can you hold a moment while I find his nurse. She’s with another patient.”
After what felt like a rather long time on hold, the nurse in question is on the phone. She is all business, announcing the name of the patient and that he asked to talk with me. I know him as a cancer patient.
Seeming rather annoyed she confides, “Over and over again he said that only you know.”
While I’m trying to grasp the meaning of his pronouncement she asks, “Can I tell him that you’ll stop by to see him?”
Without hesitation, I say that I’ll be right there. I push my chair back from my desk and clip on my official hospital badge, which identifies me by name and job title. As I make my way from the cancer center through the medical office building and into the hospital, I’m baffled by what the patient meant by “only you know.”
I speak no medical language and serve no clinical function. I am a writer who helps to improve this doctor-patient communication by documenting the patient’s perspective of illness. In my role of medical humanist, I record what patients understand about their health status, treatment plan and prognosis. My note is reviewed by the doctor and included in the medical record, serving to validate the patient’s perspective and enhance the doctor’s understanding of the person they are caring for. This intervention provides an opportunity for misunderstandings to be addressed.
As I enter the room, he turns his head and softly utters, “You know, only you know.”
What his wife knows, she tells me. “He has tumors on his brain and it’s causing him to have fits. He’s just not thinking straight but he keeps asking for you and says that only you know.”
“What do you know that the doctors aren’t telling us?”, she asks.
I do not know what his doctor said to him. I know bad news is heard in incomplete sentences. I know that doctors rely on statistics, using a 5-year survival rate to predict a patient’s prognosis. Statistics don’t say anything about a particular individual, only about groups. I know that his doctor is empathetic and usually asks if there are any questions. But patients tell me they don’t know what questions to ask. I have come to learn that doctors often interpret silence as comprehension.
To this patient’s wife I say, “I don’t know what the doctors aren’t telling you.” I tell her that the language that doctors speak is not always a language you speak.
“Isn’t that the truth,” she exclaims.
I ask myself, what is the truth? I know there can be different views of the truth—the patient’s truth, his wife’s truth and then the truth of his doctor, who relies on knowledge from medical science. But who holds the truth in this case?
The patient cries out for the second time, “You know, only you know.”
He closes and opens one eyelid, deliberately punctuating his words with a wink. Who was it that said, “One eye sees, the other feels?” I can’t recall but I know a wink to be suggestive. It’s an act that indicates it’s just between him and I.
I move from the foot of his hospital bed to his bedside. The guardrails, which keep him from falling, prevent me from getting too close. I extend myself up and lean over. I bring my ear close to his mouth to keep our words just between him and I. Close up I hear the sound of dry lips parting–it is the sound of human effort. I feel the warmth of his breath extend to my cheek. I breathe in the scent of strawberry. In my line of sight is an opened can of Ensure, which accounts for the sweet smell. I notice that the flexible straw is pointing to me.
He murmurs, “I am here by chance, not choice.”
What do I know about chance? Chance lacks forethought. What about choice? I imagine that when one learns your life is threatened you have a choice to either turn toward this knowledge or away from it. Yet, in the act of going back and forth there will be a short but not insignificant moment in time that one faces that knowledge head on. I know he made a choice. The doctor told him that his disease has spread to his brain.
What patients know, their truths, are not usually published in medical journals but can be found in the literature of illness. In Intoxicated by My Illness Anatole Broyard, a patient who writes about his experience, notes, “Inside every patient is a poet trying to get out.”
I leave his hospital room knowing that he knows he has a poor prognosis. What he says to me and what I say to him, I will communicate to his doctor in my medical humanist’s note. I will attach the note with a wire clip to the front of his chart for the doctor to read and sign before being filed in his medical record.
However, in this case, I found his doctor standing at my office door with my note in hand and a look of disbelief claiming, “He didn’t say that!”
Is she accusing me of lying?
“You know,” stating the medical facts, “he is not wholly conscious. It is the side effect of morphine.”
“I prefer the philosopher’s reasoning,” I tell her.
“Which is?” she asks.
I offer the words of philosopher Gaston Bachelard who said, “The subconscious is ceaselessly murmuring, and it is by listening to these murmurs that one hears the truth.”
She smiles and signs her name above the word physician, which sits beside my signature and title.