The parents' perspective: ethical decision-making in neonatal intensive care
Related Experiment Videos
1School of Nursing, Creighton University, Omaha, NE 68178.
Insights
Parents of high-risk newborns in intensive care nurseries experience ethical dilemmas differently than medical professionals. Their perspective centers on the "medicalization of parenting," influencing decision-making responsibilities.
Area of Science:
- Neonatal Intensive Care
- Bioethics
- Parental Decision-Making
Background:
- Ethical considerations in neonatal intensive care are extensively debated.
- A significant gap exists in understanding the parents' ethical perspective on treatment decisions for high-risk neonates.
- Existing literature primarily focuses on healthcare professionals' and ethicists' viewpoints.
Purpose of the Study:
- To systematically explore and describe the ethical dimension of care from the perspective of parents with high-risk newborns.
- To identify the core concepts and concerns parents face when making treatment decisions in a neonatal intensive care unit (NICU).
Main Methods:
- A qualitative study involving 32 families of high-risk newborns admitted to a Level III NICU.
- Utilized a moral conflict interview guide to elicit parents' ethical viewpoints.
- Explored themes such as conflict naming, decision-making content and context, information sharing, and infant status perception.
Main Results:
- Parents' ethical decision-making responsibility is best conceptualized as the
- medicalization of parenting.
- Parental concerns significantly diverge from those of healthcare professionals, focusing on their role and experience rather than viability limits or paternalism.
- Key parental concerns included information sharing, decision-making processes, and their evolving perception of their infant's status.
Conclusions:
- The concept of
- medicalization of parenting
- offers a novel framework for understanding parental ethical decision-making in the NICU.
- Addressing the gap in parental perspectives is crucial for ethical care in neonatal intensive care.
- Future ethical frameworks should incorporate the unique viewpoint and experiences of parents in high-risk neonatal care.
Abstract:
Ethical debate abounds in the literature relative to treatment decisions for the high risk neonate in the intensive care nursery. A systematic examination of the parents' perspective is missing. To fill this existing gap, the ethical dimension of care was explored with 32 families of high risk newborns from a Level III nursery, using a moral conflict interview guide in order to describe their perspective. A concept of the medicalization of parenting appears to best reflect the parents' view of ethical decision-making responsibility. This concept evolved through the parents' reflection on conflict naming, content of decision-making, context of decision-making, information sharing and perception of infant status. These concerns differ profoundly from those of health professionals, philosophers, theologians and others active in this debate who cite lower limits of viability, iatrogenic effects of treatment, use of multiple invasive procedures, and the role of paternalism as ethical issues.