I was recently digging through piles of papers when a copy of a patient’s written response to one of the chapter exercises in SpeakSooner: A Patient’s Guide to Difficult Conversations (Guide) caught my attention. The answer to the question “What do you need from your healthcare team” stopped me in my tracks. The patient wrote in capital letters, “RESPECT OUR INTELLECT. RESPECT OUR CAPACITY.”
I’ve heard many answers to this question but the responses mostly described needing support, compassion, availability, communication and honesty. But there was no mistaking that this patient was concerned about doctors withholding medical information and was letting it be known that being treated with respect and fully informed was important. Taking into account that some patients want more information and others less, this answer could of value to a doctor.
It may have been just coincidence but further down in this pile of papers I came across a press release from “Challenges of Communicating with Doctors,” a community program we presented at Burr and Burton Academy (Manchester, VT) in 2005. After opening remarks, there was a screening of “Voices from the Lived World of Illness”” a video produced by the Center for Communication in Medicine of 4 advanced cancer patients sharing their hopes, fears and expectations of doctors as they faced a disease for which there was no cure.
Following the video, there was a panel discussion and Q&A. One of the panelists was Dr. Joe O’Donnell, Chief Oncologist at White River Junction VA Hospital and Dean, Dartmouth Medical School. In addressing the communication gap between doctors and patients, Dr. O’Donnell said that it is the responsibility of the doctor to “keep checking in with our patients to see if they understand what we are saying and, most important, is what we are saying what we think we are saying and what they understand is what we mean them to understand.”
I heard Dr. O’Donnell emphasize that communication must be a two-way street.
A patient once told me that listening to a doctor’s words is often like listening to a record that is skipping. Patients miss concepts and words as they fixate on one idea, particularly when charged words like “cancer” or “no cure” are spoken. As Dr. O’Donnell suggests, one way to make sure that a patient understands their health status is to check in with one another at each visit. A patient’s responsibility is to identify and communicate questions and concerns about what they don’t understand, which is the purpose of the Guide. A doctor’s responsibility is to make sure that patients understand the meaning of what they are saying. Together, through honest and frequent conversations, patients and doctors can build a relationship that can lead to patient-centered decisions about care. This requires mutual respect.