Erica Kaye, MD, MPH

Communication is an essential skill, particularly in the setting of pediatric serious illness. A care team’s utilization of clear, person-centered communication strategies, specifically when disclosing information about a patient’s prognosis, garners trust and promotes goal-directed care. My work focuses on developing and testing interventions to improve communication between healthcare professionals and children with advanced cancer and their families, as well as developing strategies to improve early integration of palliative care into cancer care and improve bereavement support for families.

I use qualitative and mixed-methods approaches to elevate the voices and lived experiences of patients, families, and multidisciplinary clinicians as they navigate advanced childhood cancer. Currently, clinicians lack a data-driven, standard approach when disclosing prognostic information to children and families experiencing catastrophic illness. Often, healthcare providers are not adequately trained to provide timely information about prognosis in the most effective, compassionate, person-centered manner. 

When patients and families perceive prognostic communication to be poor, it has lasting effects. Families may make treatment decisions that either do not truly align with their goals or that may not optimize quality of life for the whole family (e.g., early integration of palliative care). Conversely, families with a comprehensive understanding of prognosis often make decisions that mitigate suffering in children with advanced illness. For these reasons, it is important to study communication and develop strategies to improve how clinicians talk about prognosis with patients and families. 

Our research team has demonstrated that it is possible to collect, analyze, and characterize the evolution of prognostic communication in advanced pediatric cancer using longitudinal, prospective research approaches. Obtaining these data does not place undue burden on patients and/or family members, and we have discovered impactful results. We identified clear opportunities to improve provision of prognostic communication at key timepoints across the illness course as well as parsed out three distinct styles that clinicians use to convey information. Our research has allowed us to explore how each style may impact the perception of prognostic communication from different points of view. 

We are also studying how to preserve and augment trust and therapeutic alliance between patients, families, and clinicians. Therapeutic alliance is a fundamentally important, collaborative relationship built on trust and mutual engagement, and nurturing this relationship can profoundly influence patient and family experiences, goal-concordant care, and quality of life and end-of-life outcomes. 

Preserving hope through honest communication

Many families of children with serious illness maintain hope in the face of treatment-refractory or incurable disease. Our research has shown that clinicians can continue to support patients and families, honoring and sustaining hope, while simultaneously providing clear and candid information about prognosis. 

In addition to supporting families, we also need to think about how to best support and educate our care teams who interact with patients and families. We conducted a population-level, mixed method study to identify challenges in providing pediatric palliative care in the Mid-South. Results showed that community hospice nurses need access to pediatric-specific training to better serve our pediatric patients undergoing community-based hospice care. Furthermore, we suggested effective ways to implement educational programs to provide this support to healthcare teams. 

Mentorship

I am deeply committed to mentorship of students and trainees to grow the careers of skilled and compassionate researchers in our field. Over the past decade, I have mentored more than 40 students and trainees including fellows, residents, medical students, graduate students (PhD and MPH programs), undergraduate students, and high school students.