I can’t tell you how often I’ve heard patients say that they didn’t know what questions to ask. Others have said that they were too intimidated to question a doctor. I recall George Lewis, who appeared in our video Voices from the Lived World of Illness saying, “You hear but you don’t comprehend. A day or so later you wish you would have asked questions.” In the same video Pat Barr states, “Doctors take silence as comprehension.”
Pat, who was fearful of hearing bad news, goes on to say, “I try not to let my doctors know if I don’t understand something…When I’m not doing well, and sometimes I’m not, I get frightened, sad, even depressed, but I do my best to mask it. Is there anyone who doesn’t? Do other patients mask it better than I do?”
In contrast to George and Pat, Rich Reisner, who appeared in our Difficult Conversations video, emphatically states, “You, the patient, need to guide your life… The doc may disagree and warn you it’s not the right decision to make but it’s yours to make.” Steve Williams, another patient in the video, talks about the importance of asking questions, emphasizing that doctors “don’t understand what you know or don’t know.” We also hear Laura Byrne tell us, “Doctors have a hard job. Not everyone wants to have these conversations. Some people do.”
As an ice breaker for SpeakSooner presentations to both medical and community audiences, we often show a slide with a cartoon of a doctor asking a patient if they have any questions and a thought bubble above the patient’s head stating, “I don’t know what questions to ask.” No matter who’s the audience, the cartoon evokes laughter. Actually, it’s not really funny because not knowing what questions to ask can have regretable consequences. I suspect these are laughs of embarrassment. That is, patients know they should be speaking up, even saying they don’t know what questions to ask. For healthcare providers, the slide is a reminder that they are avoiding saying what they know, which can be very uncomfortable. In the medical literature, this impasse is referred to as “collusion of silence.”
So, why do some patients open conversations with healthcare providers while others remain silent? Why do some doctors avoid opening difficult conversations while others are more forthcoming? We’re now moving into a psychological space in which I have no expertise. However, I’ve been a witness to these medical encounters and observed the shared excitement of patients, their loved ones, doctors and nurses when cancer therapies are effective as well as the agonizing look on their faces when treatments failed. Everyone is impacted by outcomes.
Whether doctors take silence as comprehension or not, I’ve learned that they are not mind readers. So, if patients do not ask questions or confide that they don’t know what questions to ask, misunderstandings are more likely and decisions about care may have regrettable consequences. This is why I developed SpeakSooner®: A Patient’s Guide to Difficult Conversations, a tool to prepare patients to identify and communicate questions and concerns. There’s too much at stake to stay silent.