Monday, November 10, 2008

November 10, 2008 - Diagnosis Amnesia

Today, reading an e-mail newsletter, I come across an article about a very real psychological phenomenon I’ve experienced in the past. For lack of a better description, I’ll call it “diagnosis amnesia.” (“New Cancer Patients Retain Little Medical Information,” HealthDay News, October 22, 2008.)

It’s a common phenomenon, it seems: when a doctor has bad news to deliver to a patient, the patient may speak calmly and rationally, ask appropriate questions and nod with evident understanding. But then, the very same patient may walk out of the office and promptly forget a good deal of what the doctor has just said.

I know. That’s what I would have done on the day of my diagnosis, had I not had Claire along with me to remind me of the details, and had I not brought a notebook to scribble down all the medical terms we were hearing for the first time.

The article reports how “researchers... found that most people just diagnosed with cancer remembered less than half of what their doctor had told them.” I can remember concentrating very intently, that day, on what Dr. Lerner was saying to us. I can remember asking him to define terms, to explain the interpretation of test results – all the right questions, in other words. But then I can also remember, while surfing the medical-information web sites at home a few hours later, struggling to recall whether he’d just told me I have B- or T-cell lymphoma (which I now understand is a hugely important piece of information). Many of the details that had been so crystal-clear to me, there in the examining room, had slipped right out of my memory banks. I can remember opening up that pad of paper I’d brought with me, and reading the barely legible notes I’d taken – notes that were so fragmentary, they made little sense. And I’d only written them two or three hours before! It was like I had wool between my ears, or something.

I now recognize this as a common, ordinary symptom of psychological denial. The words, “You’ve got cancer,” are so momentous, so emotion-laden, that they have the capacity to force the brain to do a partial data-dump.

The conclusions of the researchers doesn’t surprise me one bit. “In one ear and out the other” with half of what the doctor has said doesn’t seem at all unusual.

Here’s more:

“Older people tended to ask fewer questions than younger ones, and surprisingly, those who asked the most questions had poorer recall. And people with a grimmer prognosis tended to remember less information than those with a brighter outlook, according to the study.”

Yup. That’s denial, all right.

So, what does this suggest, when it comes to trying to be a good patient? Bring someone with you, for one – a second set of ears always helps. Bring along a notebook, and don’t be afraid to write things down, right there in the doctor’s presence. Also, ask the doctor for booklets and brochures that explain your condition (fortunately, when it comes to most cancers, the doctors have plenty of these to give away, courtesy of the pharmaceutical companies).

And, one more thing: don’t worry if you have a hard time remembering this stuff. It’s just your system hunkering down and trying to protect you from the impact of dreadful news. Don’t be surprised if you have to reconstruct, later, what you heard – based on what your friend or family member recalls, and what you wrote down in your notebook.

Diagnosis amnesia is a powerful thing – and very real.


Ronni Gordon said...

Very informative post.
I had my sister and two friends with me on my first visit to my hematologist. It was very useful. I also took a little blue notebook that I still carry around to clinic visits. After a while I had to tell my sister to stop coming to the clinic with me because she was asking too many questions along the lines of things I didn't want to know about. I guess once you get used to the whole process and determine your own level of medical curiosity. then you can whether you want "company" during your visits.

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Wendy S. Harpham, MD said...

Dear Pastor,
Another option is to have the "big meeting" after you have a "little meeting," the purpose of which is for the physician to (1) share the diagnosis, (2) give a broad overview of the evaluation and treatment-decision phase, (3) provide some material to help the patient (and family) begin to learn the basics while they begin to adjust to the diagnosis, (4) provide encouragement that you will learn what you need to learn to make wise decisions, and (5) reassurance that you will be cared for well. If some immediate problems need attention, such as pain or decisions about work, they can be addressed, too.

Since we know that 50% of the information can't be processed and remembered by the patient, when two visits instead of one is an option, waiting until the patient is in a better position to benefit from the conversation may be the way we should go.

With hope,

Anonymous said...

A mini tape recorder comes in handy if the provider has no objections