Background Neonatologists, legal experts and ethicists extensively discuss the ethical challenges of decision-making when a child is born at the limit of viability. The voices of parents are less heard in this discussion. In Norway, parents are actively shielded from the burden of decision-making responsibility. In an era of increasing patient autonomy, is this position still defendable? Research question In this article, we discuss the role of parents in neonatal decision-making, based on the following research question: Should parents decide whether (...) to provide lifesaving treatment when their child is born at the limit of viability? Research design We conducted eight interviews with 12 parents, 4 individuals and 4 couples, all having experienced prenatal counselling at the limit of viability. The interviews took place at different university locations in Norway in the years 2014–2018. Ethical considerations All study participants gave their written informed consent. The Regional Committee for Medical Research Ethics approved the study. Findings We identified six main themes in parents’ responses to the research question. Parents (1) experienced an emotional turmoil confronted with birth at the border of viability, (2) emphasized the importance of being involved in decision-making, (3) described and reflected on the need to balance the parental instinct of saving, (4) were concerned about the dilemmas involved in protecting the family, (5) were worried about the burden of overwhelming responsibility and (6) called for guideline relief. Conclusion The perceived parental instinct of saving the life of their child makes it hard for parents to step away from a call for ‘everything to be done’. Involvement of an interprofessional periviability team drawing on the experiences and viewpoints of nurses and neonatologists in decision-making is needed to protect both infants and parents against undue parental push for treatment and enable parents to make good decisions regarding their child. (shrink)

Background Nurses have an essential role in caring for end-of-life patients. Nevertheless, the nurse’s involvement in the passive euthanasia decision-making process is insufficient and lower than expected. Objectives To explore factors associated with nurses’ intention to be involved in non-treatment decisions (NTD) regarding passive euthanasia decision-making versus their involvement in the palliative care of patients requesting euthanasia, using the Theory of Planned Behavior (TPB) framework. Design A cross-sectional study utilizing a random sample. Participants and research context The study was conducted (...) in one of the largest hospitals in Israel among 125 nurses employed in internal and surgical care wards. Data was collected through face-to-face interviews between March and April 2019. Method A closed structured questionnaire was developed according to TPB instructions. A paired sample t test and two multiple hierarchical regressions were conducted. Variance explained (R2) and the significance of F change were calculated for each regression. The study used the STROBE statement guideline. Ethical considerations The study was approved by the hospital’s Helsinki Committee (#20.11.2017). Findings A paired sample t test revealed that nurses’ involvement in the palliative care of patients requesting passive euthanasia was significantly higher than in NTD regarding euthanasia. Regression analyses revealed that nurses’ position and attitudes explain their intention to be involved in decision-making; attitudes and perceived behavioral control explain nurses’ intention to be involved in the care of patients requesting euthanasia. Conclusions According to the TPB, nurses’ attitudes explained their intention to participate in decision-making regarding passive euthanasia. It is recommended to enhance open discussion of this complex issue to encourage nurses’ willingness to participate in NTD decision-making regarding euthanasia. (shrink)