I was recently sent Holding Hope for Patients with Serious Illness (Journal of the American Medical Association, September 16, 2021), which explored the complicated issues that doctors face in discussing “hope” with patients facing a poor prognosis. The article reminded of when I was on staff at Southwestern Vermont Regional Cancer Center (2003-05) and how my medical humanist’s notes provided insight into the patients understanding of their prognosis to the oncologists and nurses. There were patients who were unrealistic about their future, some were pessimistic and awaiting a dire outcome and others just didn’t know what to expect. In listening to patients I learned that hope could change over time. Adrienne Barnes, a patient featured in our video “Voices from the Lived World of Illness,” said, “Hope is different moment to moment, day to day and week to week.”
Drs Abby Rosenberg, Robert Arnold and Yael Schenker, the articles authors, hone in on the importance of asking what patients hope for, while recognizing that it could be in conflict with their health status and prognosis. The authors state, “It is not necessary to contest the answers nor convince patients to consider other futures. Instead, the clinician could acknowledge the response and also ask, ‘What else are you hoping for?’ And then again, ‘What else?’ The point is to help patients balance and diversify their hopes, providing flexible future options and possibilities.”
Clearly, the authors embrace the principles of palliative care and recognize the psychological dynamics of what patients experience when cure is no longer viable. They note,” Rather than being concerned that hope is either so fragile that it can be lost, or so powerful that it can overwhelm decision-making, clinicians should remember that hope is protective, if not necessary for managing serious illness. Hope is fluid, expandable, and persistent. Holding complex, flexible and diverse hopes enables patients to believe in the unlikely while simultaneously accepting the inevitable. The role of the clinician is to support both.”
The authors’ view of humanistic doctor-patient communication about “hope” complements a core principle of our SpeakSooner initiative. That is, patients need to open conversations about what to expect in the future or, as the authors suggest, be encouraged by healthcare providers to do so.
To that I say, Amen.
For certain, Adrienne’s words about hope hold true today as they did almost 20 years ago. I am grateful to the patients who opened my eyes to the lived world of illness. They provided me a template to develop SpeakSooner: A Patient’s Guide to Difficult Conversations, a tool to help patients identify their questions, concerns and preferences for care and prepare for discussions about hard subjects. “What I Hope for,” one of the chapters, was designed to prompt patients to talk openly about what is often an ever-changing perspective about the future. Like the authors of the article, we emphasize the importance of patients defining and coming to terms with what they hope for.
The Guide can be accessed for free at speaksooner.org.