Value-Based Factors Contributing to End-of-Life Decision-Making in a Pediatric Intensive Care Unit

Area of Science:

• Pediatric Intensive Care
• Bioethics
• Palliative Care

Background:

• Over 80% of families forgo life-prolonging therapies in the PICU within 24 hours of a child's death.
• Factors influencing these end-of-life decisions are not well understood.
• Understanding value-based factors is crucial for supporting families.

Purpose of the Study:

• To explore family decision-making when declining cardiopulmonary resuscitation (CPR) for children.
• To use a framework of holistic values and ethical principles.
• To contextualize end-of-life care choices in the PICU.

Main Methods:

• Qualitative analysis of mixed-methods data from electronic medical records.
• Thematic analysis of narrative documentation from PICU and pediatric palliative care (PPC) notes.
• Involved 19 purposefully selected children and their families/providers in a Midwestern U.S. quaternary pediatric hospital.

Main Results:

• Identified key themes influencing decisions: family support, personal values, spiritual beliefs, ethical standards, and communication/language.
• Language and terminology used by medical providers were significant factors.
• Family support systems and personal/spiritual beliefs played a critical role.

Conclusions:

• Psychosocial, ethical, and spiritual factors significantly impact decisions to forego high-intensity care like CPR.
• Providers should consider these value-based factors when guiding families.
• Consultation with PPC, patient advocacy, and ethics teams can aid decision-making.