Life support decisions for children: what do parents value?

Area of Science:

• Pediatric Bioethics
• Family Decision-Making
• End-of-Life Care

Background:

• Parents face profound ethical dilemmas when deciding on life-sustaining treatment for children.
• Understanding parental meaning-making is crucial for supporting families during these critical decisions.

Purpose of the Study:

• To explore the meaning parents ascribe to authorizing or withdrawing life-sustaining treatment for their child.
• To identify the core values influencing parental decisions in pediatric end-of-life care.

Main Methods:

• Exploratory qualitative design.
• Content analysis of interviews with 20 families.
• Focus on decisions made within the prior 6-12 months.

Main Results:

• Parents' essential meaning derived from their sense of self, being, and an ethic of responsibility.
• Decisions were influenced by values concerning life, pain/suffering, quality of life, and the child's best interest.
• Family, faith, nature, and technology also emerged as significant value themes.

Conclusions:

• Parental meaning in life-sustaining treatment decisions is deeply intertwined with self-perception and ethical responsibility.
• A comprehensive understanding of parental values is essential for ethical and compassionate pediatric end-of-life care.
• Supportive care should acknowledge the multifaceted values guiding these difficult family decisions.