A "Primer" for Parents Involved in Ethics Consults Involving Their Children

Area of Science:

• Bioethics
• Pediatric Ethics
• Medical Ethics

Background:

• A critical disconnect exists between parents and ethics consultants in pediatric cases.
• Parents often lack accessible, ethics-informed resources to advocate for their children's best interests.

Purpose of the Study:

• To address the identified gap by providing ethics-informed resources for parents.
• To offer guidance for ethics consultants and healthcare providers interacting with parents on complex ethical issues.

Main Methods:

• Development of a "primer" designed for parents as laypeople.
• Inclusion of recommendations for ethics consultants and providers.

Main Results:

• The primer addresses key ethical topics relevant to pediatric care, including the limits of ethics, the disability paradox, and issues across different child age groups.
• It also covers sensitive topics such as suicide, impact on siblings, and parental grief.

Conclusions:

• New, parent-focused materials are needed to improve communication and advocacy in pediatric ethics.
• This primer serves as an initial model for future resources aimed at supporting parents in complex ethical decision-making.