When I was first diagnosed,” she said, “I didn’t feel I needed your help. I know how to get what I need—I’m a nurse, we speak the same language.”
I hear the proverbial we, of which I am not a part. The function of my role is not that of a social worker, counselor, or patient advocate but one that helps facilitate doctor/patient communication. I offer the skill set of a writer to the medical encounter. I observe, listen and note what patients understand and feel about their illness—in their own words—for the doctor. The written documentation is reviewed by the doctor and placed in the medical record.
“How can I be of help?” I ask.
“I am looking for a doctor.” She says.
“What are you looking for from a doctor?”
“ I want a doctor who can say ‘I am not going to give up on you’—to see me—who is very much alive now. I want a doctor to say, you’re a nurse—you know what the statistics say. What I want my doctor to tell me is that I can be an outlier—a doctor who will stand with me at the edge of a cliff—to jump off and discover with me that we’re flying or to find it is only a 3-foot drop.”
She goes on to explain her metaphor. “I am not asking my doctor to believe in unconventional treatments—but to join me in my all-out effort to save my life. A doctor who will keep his or her eyes and ears open for the most up-to-date treatments. What I’ve seen instead,” she says,“ is the shuttering of their eyes and the sensation that there’s really nothing more that we can do for you.”
I think about what patients want and how it can differ from what doctors think patients should want.
Before I place my medical humanist’s note recounting our conversation in the folder marked for the doctor’s review, I attach a Post-It note: “Can you be this doctor? I think you are. Do you?”
With note in hand, the doctor comes to my office. “I am afraid I will fail her,” she says.
“Are you willing to try?” I ask.
She takes her pen from the breast pocket of her white coat and places the note on my desk, and signs on.
As I slip my note in the patients medical record the words of the Rolling Stones’ MickJagger and Keith Richards echo in my minds ear.
“You can’t always get what you want
But if you try sometimes you just might find
You get what you need…”
great note. unfortunately i cant find a doctor willing to really offer help, one that says they will listen to me and be there, no matter what. we are totally alone and helpless. no one in the medical community will explore or help.so sad and lonely.
Sadly, I hear from too many patients who do advocate and do speak out and up, and still are stymied by the lack of attention and by the amount of their unmet needs.
I only wish you were still out there in the filed, in the offices and hospitals available for them. I appreciate that your workbook fills that void.
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