In the video that accompanies SpeakSooner: A Patient’s Guide to Difficult Conversations, we hear Fritz acknowledge that the rewards of continuing treatment more than exceed the risks but he recognizes there are no guarantees. Living with advanced prostate cancer, Fritz states that he and his wife decide together “to do whatever my physician thought was appropriate” to arrest the progress of the disease. Then, he 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 a discussion I had with several oncologists at a world renown cancer research institution. Not long after the release of the SpeakSooner guide and accompanying video, I and co-producer Dr. Bernard Bandman were invited to present our work to several of the cancer center’s clinical divisions. For each seminar we began with viewing the video, which was followed by a discussion about issues that patients identified as important to them. During one presentation, an oncologist explained that her responsibility was to discuss the risks and benefits of treatment options, including experimental therapies offered in clinical trials.
As a medical humanist, I wasn’t hearing anything 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 patients 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 continuing futile treatments because of a fear of 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 assume it’s a family member’s preference?” The doctors around the conference table were silent as if that was not something they considered. At that point I didn’t think the issues I raised were worth pursuing any further but the experience served as another lesson in the importance of patients taking the lead in opening conversations about the goals of treatments.
As someone who recognizes the overwhelming demands on doctors in today’s healthcare climate, 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.