Webinar - Hope And Realism: Partnering with Patients and Families who Hope for Cure Despite Poor Prognoses

On-Demand Webinar

For many children with advanced cancer and their families, hope is tenacious and inextricably linked to coping and resilience. Parents describe hope as "life-sustaining," persisting across the illness course, even at end of life. Unfortunately, many clinicians misinterpret hope as refusal to accept reality (e.g., "that family is in denial") or worry about enabling false hope. Clinicians also avoid disclosing big picture information about incurable disease in the setting of smaller uncertainties (e.g., "I don't know for sure, so I don't want to take away their hope"). In this session, we will review data demonstrating that transparent disclosure of poor prognosis does not diminish hope. We also will present findings from the "Hear Our Parent Experiences (HOPE)" forum, through which bereaved parents reconceptualized the meaning of hope in the setting of advanced or incurable disease. Whether wishing for a cure, a return to normalcy, or mitigation of suffering, parents unanimously emphasized hope as indispensable and coexisting simultaneously with prognostic awareness. We will present the HOPE forum's 12 recommendations to guide clinicians. Finally, we will introduce recent evidence-based communication strategies to support person-centered, honest, longitudinal sharing of prognostic information in the context of advancing pediatric cancer.     

Learning Objectives:

• Review the existing literature, anchored in the voices of patients with advanced cancer, families, and bereaved parents, which characterizes the tenacity and necessity of hope across the illness course.

• Describe a novel conceptual model co-designed by bereaved parents of children with cancer to reimagine the meaning and purpose of hope in the setting of incurable illness.

• Explain bereaved parents' recommendations to guide clinicians in navigating difficult conversations about advancing illness when parents continue to maintain hope.

• Consider and practice evidence-based communication strategies, including a "seed planting approach" to longitudinal prognostic disclosure, to support person-centered, honest sharing of information about prognosis in the context of advancing pediatric cancer.

• Speakers:

• Daniel Cannone, DO MS
• Erica C. Kaye, MD MPH
• Taylor Aglio, MD

The webinar features a lecture presentation followed by recorded Q/A. Registration includes on-demand access to the full recording.