Personalized decision-making and the art of making recommendations about complex decisions

Friday, April 25, 2025

4:00pm – 5:30pm HST

Location: Convention Center: 313 A

CE: CME: 1.5
Ethics CME: 1.5

Selected By: Neonatal

Chair(s)

eduard verhagen, MD, JD, PhD (he/him/his)

Professor of pediatrics
University Medical Center Groningen
Groningen, Groningen, Netherlands

Disclosure(s):

eduard verhagen, MD, JD, PhD: I do not have any relevant financial / non-financial relationships with any proprietary interests.

Advances in diagnostics, prognostication, and therapeutics are making end-of-life for are becoming more complicated than ever. Forty years ago, these decisions were primarily based on conditions like Down Syndrome and Spina Bifida. Today, they often involve rare diseases that lead to complex, chronic, and technology-dependent situations with uncertain prognoses. As new treatments emerge, prognostic estimates can change, complicating decision-making further. Personalized decision-making (PDM) is an emerging approach that helps clinicians and parents identify unique factors relevant to each case. It necessitates a delicate balance between physician guidance and parental autonomy, which can lead to moral distress if the balance shifts away from the child's best interests.

In this session, international experts will discuss the goals and pitfalls of PDM, using case studies to highlight its complexities, especially when cultural or religious norms conflict. They will share best practices and address ongoing controversies.

Dr. John Lantos will introduce PDM theory and its differences from previous approaches. Dr. Annie Janvier will focus on communicating with parents when a baby's prognosis is poor. Rebecca Pearce will discuss what parents prioritize in complex decisions. Dr. Verhagen will offer a Dutch perspective, including insights on pediatric euthanasia's impact on communication. Dr. Prentice will explore the moral distress faced by parents and clinicians in the context of PDM. Presenters will provide real-world examples of decision-making complexities across cultures, with time for audience questions to enhance understanding.

Learning Objectives:

Understand the tensions inherent in personalized decision-making
Examine personalized decision making, the role of communication and consider practical recommendations.
Analyze the interactions between the concept of personalized decision-making and the need to respect differences in approaches to difficult end-of-life decisions.

Presentations:

4:00pm – 4:30pm HST

Introduction
Speaker: John Lantos, MD – Sun River Health
4:30pm – 4:40pm HST

New Steps in the Dutch Approach Towards Decision-making and Palliative Care
Speaker: eduard verhagen, MD, JD, PhD (he/him/his) – University Medical Center Groningen
4:40pm – 5:10pm HST

Parental Perspective on Communication About Care and Outcomes in the NICU
Speaker: Rebecca Pearce, BSc, MSc, BEd (she/her/hers) – CHU Sainte Justine
5:10pm – 5:20pm HST

Speaking About Life and Death in the NICU: Personalized Strategies
Speaker: Annie Janvier, MD, PhD (Annie) – University of Montreal
5:20pm – 5:30pm HST

The Evolving Concept of Moral Distress in the Context of PDM
Speaker: Trisha M. Prentice, MBBS BMedSci MBioeth FRACP PhD (she/her/hers) – The Royal Children's Hospital