Getting Cancer Communication "Just Right"

I enjoyed a leisurely chat with my old friend Yi this week. We first met as teenagers; lost touch for many years and – stop me if you’ve heard this before – reconnected via social media a few years ago.

We talked about politics, our families, our adolescent escapades and – intermittently -- about cancer. Yi’s starting “Big” chemo this week. Her mets are growing.

Almost buried in the flow of our conversation was something disturbing. Yi said that recently she returned to the surgeon’s office for a visit, almost a year after major surgery to remove her primary tumor. Dr Inept apparently said he was glad to see her, and added “I didn’t think I would see you again.”

WTF?

“I didn’t know I was that bad last year,” Yi told me in a smaller, quieter voice.

I thought back to the panel at ASCO 2013 that had excited me most. It was made up of two oncologists and a psychologist: Don Dizon, Anthony Back and Mary Politi. In their abstract The Power of Words: Discussing Decision Making and Prognosis, they said “Our words may matter to patients and the consequences of our words may stay with them long after the clinical visit has ended.”

I believe Yi would call that an understatement.

The information spectrum

“We hope to encourage providers to welcome patients as active participants in their care by sharing information, requesting their input, and by engaging them…” the authors said and – demonstrating the utility of speaking in language the audience understands -- encouraged attendees to “titrate information” provided to patients.

It’s solid advice. I think about cancer information on a spectrum

At one end too little to afford the patient an
understanding and at the other so much that the patient becomes overwhelmed, frightened or confused.

The sweet spot, of course, is: Enough to support engagement & shared decision making. While their talk was enlightening and well-received, the ASCO panelists failed to address a couple of other factors that make the oncologist's word-choice algorithm even more interesting:

• Patients vary tremendously in their capability to understand and their attitudes toward clinical information -- during her pre-surgical consult Yi had instructed Dr Inept “don’t give me numbers.”
  
  Without better skills for addressing his patient’s anxiety level / learning style / cultural preference / numeracy the physician left a wide gap in his patient’s understanding of her health status.
  

• Patients remember very little content after a consultation and much of what they remember is wrong (Patients' Memory for Medical Information).
  In my clinic we offer audio recording as recall of information is improved when patient-physician interactions are recorded (Feasibility of an Audiotape Intervention for Patients with Cancer).

• Assess the patient’s preference

How To

The action steps described by the ASCO panelists are:

• Consider environment & context
• Be incremental with details: rank the relevant data
• Talk about uncertainty – call it out, don’t leave it unsaid or between the lines

To which I add: set your sites on getting the message "just right," and be human.