Protect us from ourselves: Balancing the parental instinct of saving

Area of Science:

• Neonatal ethics
• Perinatal medicine
• Parental decision-making

Background:

• Ethical challenges in neonatal decision-making at the limit of viability are extensively debated by medical and legal experts.
• Parental perspectives are often underrepresented in these discussions.
• Norway's approach of shielding parents from decision-making responsibility is questioned in the context of increasing patient autonomy.

Purpose of the Study:

• To explore parents' roles and perspectives in neonatal decision-making for infants born at the limit of viability.
• To address the research question: Should parents decide whether to provide life-saving treatment for their child born at the limit of viability?

Main Methods:

• Eight interviews were conducted with 12 parents (individuals and couples) who had experienced prenatal counseling regarding birth at the limit of viability.
• Interviews took place at Norwegian university locations between 2014 and 2018.
• Informed consent was obtained, and the study was approved by the Regional Committee for Medical Research Ethics.

Main Results:

• Parents experienced significant emotional turmoil when facing birth at the limit of viability.
• A strong desire for involvement in decision-making was expressed by parents.
• Parents grappled with balancing their instinct to save their child against concerns for family well-being and the burden of responsibility.
• Parents called for clearer guidelines to aid their decision-making process.

Conclusions:

• The parental instinct to save their child can lead to a push for maximal treatment, making it difficult for parents to withdraw care.
• An interprofessional periviability team, including nurses and neonatologists, is crucial for supporting parents.
• This team approach can protect infants and parents from undue pressure for treatment and facilitate informed decision-making.