Description:

Provision of honest and timely diagnostic and prognostic information is essential in the care of children with serious medical illness and their families (Kaye et al., 2024). Unfortunately, all too often disclosure attempts are impeded by guardian preferences and worries, members of the medical team, and/or team dynamics, ultimately resulting in patients garnering a fragmented understanding of their health status and care plan. The ramifications of this can be significant and include perceived loss of autonomy, heightened psychological distress, and strained relationships with both guardians and care teams.

The goal of this presentation, then, is to offer ethical and clinical considerations to guide clinicians when faced with team or guardian-initiated resistance to engaging in disclosure conversations with youth with serious medical illness. Specifically, Drs. Thompson and Khatami will discuss 1) the historical context, ethical standards, and pertinent challenges for holding guardians accountable as surrogate health decision makers for minors, 2) children’s understanding of illness, death, and dying at different developmental stages, 3) principles of adolescent decision-making within the context of developmental and psychological considerations of how minors receive and process emotionally salient information, 4) current research findings about the impact of withholding health information from minors, 5) strategies to unpack both team and guardian-initiated resistance to engaging in disclosures, and 6) practical tools and tips for leading disclosure discussions, including strategies to empower minors to utilize acquired health-related information as a foundation for advanced care planning and goals of care conversations. Case-based discussions will feature prominently in this presentation, with attention to individual and family cultural and spiritual values and beliefs.

Through this presentation, Drs. Thompson and Khatami will highlight that disclosure is a foundational aspect of providing ethical, patient-centered care to youth with serious illness and that it can be done effectively, utilizing nuanced communication strategies that promote understanding in ways that are digestible, gentle, and developmentally appropriate without prompting relational strains, breaches in trust, or psychological distress.

Presenter Bios:

Amanda Thompson, PhD: For almost two decades, Amanda Thompson, PhD has dedicated her career as a pediatric psychologist to caring for and improving the lives of children and adolescents impacted by cancer and supporting bereaved families. She completed her PhD in Clinical-Developmental Psychology at the University of Pittsburgh, her predoctoral residency at Nemours Children’s Hospital in Wilmington, DE, and her post-doctoral fellowship at Nationwide Children’s Hospital in Columbus, OH. Dr. Thompson then spent a decade as Director of Psychology and Psychosocial Services in the Center for Cancer and Blood Disorders at Children’s National Hospital in Washington DC, building world-class psychosocial teams and training the next generation of pediatric psychologists. During this time, she served on the interdisciplinary Ethics Committee at Children’s National Hospital and was a member of the Bioethics Committee of the Children’s Oncology Group. Dr. Thompson currently serves as Chief of Pediatric Psychology and Director of Pediatric Programs at Life with Cancer, the psychosocial program of the Inova Schar Cancer Institute in Fairfax, VA.

Dr. Thompson has a national presence as an author of the Standards of Psychosocial Care for Children with Cancer and their Families and as project lead for the development of Competencies for Psychologists in Pediatric Palliative Care. She currently serves as Chair of the American Psychosocial Oncology Society’s Pediatrics/AYA Special Interest Group, APA’s representative to the Pediatrics Division of the National Coalition of Hospice and Palliative Care, and a board member on the Pediatrics Council of the American Academy of Hospice and Palliative Medicine. She was the 2024 recipient of the American Psychosocial Oncology Society’s ‘Outstanding Clinical Care Award’ and founder of SPP’s Palliative Care and End of Life Special Interest Group. Her interests include pediatric psycho-oncology, palliative and end-of-life care, grief and loss, program development, interdisciplinary team collaboration, and mentorship. When not at work, Dr. Thompson feeds her infinite wanderlust by traveling any and everywhere and capturing it all through her favorite hobby of photography.

Emma Khatami, PhD is both the Section Chief of Psychology as well as the Associate Division Chief of Psychology at Phoenix Children’s Hospital, where her role includes overseeing the daily operations of the inpatient consultation/liaison service for the hospital, on-call processes amongst all psychologists, and program development with other behavioral health leaders. In addition, she is the dedicated psychologist for the palliative medicine team and spends most of her clinical time engaging in prognostic disclosure and goals of care discussions with individuals aged 5-25 years in the inpatient setting. Through this role, she works collaboratively with other institutional stakeholders to create training experiences, simulations, and didactics focused on streamlining the way in which providers support minors in understanding their diagnosis and participating in surrounding decisions.

Dr. Khatami is also the psychology representative on Phoenix Children’s biomedical ethics committee, where she participates in staffing consults related to medical futility and adolescent decision-making, among other referrals. Additionally, she is an active researcher and currently the Primary Investigator on an ongoing study evaluating trends in posttraumatic stress disorder symptoms among youth undergoing bone marrow transplant and their primary caregivers. Lastly, Dr. Khatami is an avid member of the Society of Pediatric Psychology through the American Psychological Association and recently finished serving a term as the Education and Training co-chair for the Palliative Care and End-Of-Life Special Interest Group within this organization.

Learning Objectives:

After the presentation, attendees will be able to:

1. List 3 factors (i.e., historical, developmental, psychological) that impact pediatric involvement in decision making and decisions by caregivers and team members to withhold or disclose treatment-related information.

2. Identify the ethical standards that underly best practice approaches for disclosing health information to minors.

3. Utilize 2 practical tools or strategies for leading disclosure discussions with adolescents and unpacking both team and guardian-initiated resistance that may arise.

Learning Level:

This webinar is designed to apply broadly across all levels.

Conflict of Interest:

Presenters reported no conflicts of interest.

Continuing Education:

Attendees will receive 3 CE credits for attending the entirety of this webinar.

The Society of Pediatric Psychology is approved by the American Psychological Association to sponsor continuing education for psychologists. The Society of Pediatric Psychology maintains responsibility for this program and its contents.