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Advances in neonatal medicine have allowed us to rescue extremely preterm infants. However, both long-term vulnerability and the burden of treatment in the neonatal period increase with decreasing gestational age. This raises questions about the justification of life support when a baby is born at the border of viability, and has led to a so-called "grey zone", where many professionals are unsure whether provision of life support is in the child's best interest. Despite cultural, political and economic similarities, the Scandinavian countries differ in their approach to periviable infants, as seen in their respective national guidelines and practices. In Sweden, guidelines and practice are more rescue-focused at the lower end of the border of viability, Danish guidelines emphasizes the need to involve parental views in the decision-making process, whereas Norway appears to be somewhere in between. In this paper, I will give an overview of national consensus documents and practices in Norway, Sweden and Denmark, and reflect on the ethical justification for the different approaches.

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Advances in neonatology have led to improved survival for periviable infants. Immaturity still carries a high risk of short- and long-term harms, and uncertainty turns provision of life support into an ethical dilemma. Shared decision-making with parents has gained ground. However, the need to start immediate life support and the ensuing difficulty of withdrawing treatment stands in tension with the possibility of a fair decision-making process. Both the parental "instinct of saving" and "withdrawal resistance" involved can preclude shared decision-making. To help health care personnel and empower parents, we propose a novel approach labeled "postponed withholding." In the absence of a prenatal advance directive, life support is started at birth, followed by planned redirection to palliative care after one week, unless parents, after a thorough counseling process, actively ask for continued life support. Despite the emotional challenges, this approach can facilitate ethically balanced decision-making processes in the gray zone.

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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.

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In this article, we first review the development of clinical ethics in pediatrics in the United States. We report that, over the last 40 years, most children's hospitals have ethics committees but that those committees are rarely consulted. We speculate that the reasons for the paucity of ethics consults might be because ethical dilemmas are aired in other venues. The role of the ethics consultant, then, might be to shape the institutional climate and create safe spaces for the discussion of difficult and sometimes contentious issues. Finally, we report how pediatric clinical ethics has evolved differently in a number of other countries around the world.

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In Norway, a national consensus-based guideline used to address thresholds for offering life support at extreme preterm birth was issued in 1998. Since then, therapeutic advances may have changed attitudes and expectations to treatment, both within the medical community and the public, and there are concerns that systematic variations in treatment practices may exist. With this article, we describe current practices and relate them to other ethical and legal comparable areas in health care. We conclude that a revision of the 1998 guideline is warranted to obtain a common understanding of prognoses and appropriate decision processes at the limit of viability.

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OBJECTIVES: The role of parents in life-and-death decision-making for infants born at the border of viability is challenging. Some argue that parents should have the final say in decisions about life-sustaining treatment. Others disagree. In this article, we report views from health care personnel (HCP) on the appropriate parental role. METHODS: Focus group interviews with 5 different groups of HCP (neonatal nurses, midwifes, obstetricians, mother-fetal specialists, and neonatologists) dealing with life-and-death decisions throughout pregnancy and birth were performed at the Norwegian University of Science and Technology and at St Olav's Hospital in Trondheim, Norway in 2014-2017. Interviews were taped and transcribed. Inductive analysis was performed for each group discussion for emergent ethical themes. A summary of the transcribed discussion was sent to the relevant focus group participants for comments. RESULTS: Our participants felt strongly that doctors, not parents, should have the final say. They did not think parents should have to live with the burden of the decision. The possible disagreement between parents, lack of necessary knowledge, experience, time, and emotional stability all point toward the neonatologist as the optimal decision-maker, within a model of "Patient Preference-Satisfaction Paternalism." CONCLUSIONS: The general attitude of our groups was that parents should have a say and be included in a thorough information and decision-making process. The doctor, or a team of HCP, however, should make the final decision, being in the best position both epistemologically and normatively to promote the best interest of both parents and the child.

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