In the video accompanying SpeakSooner: A Patient’s Guide to Difficult Conversations we hear Fritz, who’s living with advanced prostate cancer, acknowledge that the rewards of continuing treatment more than exceed the risks but understands that there are no guarantees. He states that he and his wife decide together “to do whatever my physician thought was appropriate to arrest the progress of the disease.” Then, Fritz goes on to say, “You, in the end, need to know what those choices are and to make the ultimate decision yourself.”
Listening to Fritz brought to mind an experience at a well known cancer center. Not long after the launch of the SpeakSooner guide and video I and co-producer Dr. Bernard Bandman were invited to present our communication tool to several specialty groups at this cancer hospital. For each presentation we began with viewing the video, which was followed by a discussion about issues that patients identified. At one of the seminars, an oncologist explained that her responsibility was to note the risks and benefits of treatment options, including experimental therapies offered in clinical trials.
As a medical humanist, I wasn’t hearing any inquiry about the patient’s perspective in the decision-making process. So, I posed a question, “Do you ask patients whether they are considering a clinical trial for themselves, because loved ones are urging them or for others who could benefit in the future?”
One of the doctor’s replied, “Well, those who come to our hospital understand that they have limited survival time so there’s no need to discuss their motivation for entering a clinical trial.”
I was surprised by the response and reminded them what Laura Byrne said in the video about her continuing treatments that were ineffective only because she feared disappointing her family. Then, I asked, “What if your patient is considering a clinical trial not for themselves but because their family is urging them or they believe it’s a family member’s preference?” The doctors around the conference table were silent as if that was not something they thought about. At that point I didn’t think the issue I raised was worth pursuing. But the experience served as another example of why patients need to be prepared to take the initiative in opening conversations about the goals of treatment.
As someone who recognizes the overwhelming demands on doctors in today’s healthcare environment, I’m not encouraging an adversarial approach. On the contrary, I believe that empowering patients to ask questions about their health status and treatment options can result in building a mutually satisfying decision-making partnership, especially at times when clinical trials may be the only option.