The challenges surrounding end-of-life care in newborns, including the moral weight of decisions, best interest standards, and parental involvement in decision-making, require an interprofessional approach in order to minimize moral distress and moral residue.
The objectives of this project were to describe professional perspectives on end-of-life care in the neonatal intensive care unit, to compare and contrast these perspectives with the identified needs and perspectives of parents, and to construct a framework based on these to aid health care professionals in the approach to neonatal end-of-life care.
First, using qualitative interviews, the attitudes and experiences of 43 health care professionals were explored. Participants identified the roles, challenges, and quality indicators related to meeting parents’ and infants’ needs at end-of-life. Broad categories included: clinical expertise and moral sensitivity; communication; guidance, support, and relationships; shared decision-making; and end-of-life planning and care. Health care professionals identified challenges to team function and quality of care related to consistency of caregivers, communication, and consensus on the interprofessional team.
Next, using ethical analysis based in virtue theory, the experiences of 11 parents of infants who died following withholding/withdrawal of life-sustaining treatment were compared to those of the 43 health care professionals and used to inform a framework for approaching neonatal end-of-life care. Both individual virtues of character and virtues ascribed to the interprofessional team were important to providing good quality communication, shared decision-making, and care at end-of-life. The resulting ethical framework involves five steps: i) identifying the components of moral event(s); ii) defining the virtues important in meeting parents’ and baby’s needs; iii) applying combinations of these virtues in clinical context in order to iv) practice moral action; and iv) reflect on the process.
Next steps include the application and evaluation of this virtue-based ethical framework to end-of-life care in the neonatal intensive care unit.