I was recently reading the transcript of the “Voices from the Lived World of Illness” video, which the Center for Communication in Medicine produced in 2003. The 4 patients featured in the video shared candid observations about their experiences. In previous blogs I’ve referenced some of their comments. Yet, upon re-reading their words, I am reminded that their perspectives are as relevant today as they were 18 years ago. They continue to offer valuable teaching moments. In this blog, I turn to Adrienne Barnes, a 50 year-old nurse with pancreatic cancer, who offers her perspective about “false hope.”
Adrienne tells us, “Hope is different from minute to minute, hour to hour and day to day.” She emphasizes that hope is personal and can only be defined by one-self. As her prognosis changes over the course of illness, she has altered what she hopes for. There is no longer a cure in sight. She is not giving up. Her energies are focused on finding clinical trials, off-label chemotherapies and unconventional therapies to extend her life. Her doctors say there are no promising treatment options.
Adrienne goes on to say, “But I don’t want anybody telling me—like a doctor—I don’t want to give you false hope. If I don’t want to have false hope myself that’s fine, but don’t anyone tell me that. This is my business to struggle with.”
Adrienne was determined to pursue all options. She became outraged when discouraged by doctors to accept the ineffectiveness of available treatments. Some would say that she was in “denial.” I don’t agree. She was well aware of the prognosis but held out hope that there was something that might work, even considering experimental treatments in Germany. As she exhausted treatment options there was a shift towards accepting the reality. In her own time, she transitioned to end of life care that would minimize physical and emotional suffering.
I have witnessed doctors offering “false hope,” often stemming from their discomfort with communicating a poor prognosis. On the other hand, I have observed patients signal that they did not want to hear bad news. Even though a doctor and patient may both recognize the reality, there can be a communication stalemate between them. In the medical literature, this avoidance is called a “collusion of silence.”
I believe a first step is recognizing that doctors and patients have a shared responsibility for communicating a willingness to discuss prognosis and what one can hope for. However, it should be emphasized that doctors who bluntly tell the truth about a poor prognosis is not humanistic care. Patients, on the other hand, have a responsibility to tell healthcare providers whether they are interested in hearing the truth about their condition– or not. It was with this dynamic in mind that we developed Speak Sooner®: A Patient’s Guide to Difficult Conversations, which is designed to prepare patients to identify and communicate their questions and concerns and minimize mind reading for healthcare providers. Included in the Guide are chapters on “prognosis” and “hope.”
We at the Center for Communication in Medicine are forever grateful to Adrienne for sharing her experiences and insights in order to help others on their journey in the lived world of illness. You can view the full video at SpeakSooner.org.
I invite you to share your thoughts about “false hope” and perhaps pass on the blog.