Justified by What? Three Ways to Provide an Ethical Basis for Neonatal Policies

A central concern in the national reports from all 3 Scandinavian countries in this volume is to avoid inconsistent practices within their own countries.^1,–3 The United Nations (UN) Convention on the Rights of the Child states in Article 6.2 that “States Parties shall ensure to the maximum extent possible the survival and development of the child.”⁴ These statements of rights provide a clear principle to guide decision-making on the resuscitation of any human being. Everyone should receive life-saving treatment that is based on the same criteria regardless of their age, where they are born, and who their parents are.

Another universal principle that can be used to justify neonatal policies is a utilitarian approach. This is a different ethical approach to resuscitation decisions than a rights-based approach. Seen from the utilitarian perspective, resuscitation is right only if it leads to more benefit than harm for the person(s) involved. Thus, resuscitation should bring a net benefit for the extremely premature infant and maybe even in sum for everyone involved, including parents, siblings, health care personnel (HCP), and all of society. Resuscitation should, in sum, make the world a happier place. If there is no net benefit, then palliative comfort care is the morally right way to proceed.

The Swedish consensus guidelines for the treatment of children who are born at the border of viability of 2016 are that a child born in week 22 + 0/7 is entitled to health care on the same terms as all other people in Sweden. A child born near the viability limit has an acute, life-threatening condition that often can be treated successfully.⁵ Here, the Swedish guidelines emphasize the rights-based approach of the UN Convention for any child, including children who are born at the border of viability.

The Swedish consensus documents the aim to give sound and equal care across the country. And, the ethical principle of a right to life is well suited to provide consistent guidelines for the treatment of premature infants across Sweden (and indeed worldwide) because it offers a universal criterion for correct decision-making in neonatal care. The utilitarian principle of net benefit likewise has the aim of providing a decision-making tool that ideally can be used to single out the uniquely morally right way to act at any crossroad in the NICU.

In Sweden, the current consensus guidelines are justified by a combination of the UN rights-based approach and the universal utilitarian principle of net benefit. In line with utilitarian ethics, the guidelines include a comprehensive discussion on the long-term health outcomes of infants who are born near the border of viability. In the guidelines, the effects on the long-term outcomes of an active versus less active perinatal care are discussed, a gray zone at week 22 + 0/7 to 22 + 6/7 at which resuscitation can be considered is left, and the fact that the parents’ wishes should be considered is mentioned.

The principled nature of these perspectives makes consistent decision-making at the border of viability possible. It avoids the pitfalls of unjust ageism and other kinds of variations. To act morally right in these perspectives is to act in accordance with a sound, unchanging set of moral principles that can be used to tell right from wrong in every situation.

In Norway, the reported lack of consistent practice between the NICUs reveals that HCP have differing views on the basis for decision-making in the gray zone. A unifying concept in the Norwegian approach is, however, the best interest of the child. Norwegian neonatal care should aim to protect and promote the best interests of the child. This aim is accepted by Norwegian HCP across the NICUs. But what does it mean? The concept of the best interest of the child is open to interpretation⁶ and has been met with severe criticism of vagueness for decades.⁷ In the Norwegian setting, the multiple senses of the concept of best interest makes it both suitably unifying as a practice justification and problematically ambivalent as a guide for consistent national practice.

Authors of the Norwegian report in this volume state that, “Ethically, we can choose the ‘safe option’ and treat all infants based on the principle of the child’s right to life. This approach was rejected by the Consensus Panel in 1998 based on the belief that the costs for the infant, family, and society were too high.”³ In this way, the Norwegian consensus tried to find some middle ground between a right to life and the quality of life, not only for the child but for everyone involved. This middle ground was to go by broad gestational age (GA) limit recommendations.

GA as a cornerstone of neonatal treatment is a pragmatic policy aimed at making medical practice manageable and consistent. Treatment decisions in the NICU come with a significant degree of uncertainty, whereas factors other than GA (eg, birth weight and sex) have an effect on the statistics of outcomes. Of course, the pragmatic solution of a GA-based policy can be combined with individual assessments from case to case (a gray zone) but only up to a certain degree, at which the room made for individual assessment threatens the consistency and manageability of medical decision-making that the pragmatic framework is set up to provide in the first place.

In the report from Norway in this volume, the authors argue that a gray zone in neonatal care is justified by the extremely high degree of prognostic uncertainty and potential burden of treatment. Individual assessment at birth does not add prognostic clarity. Thus, it is extremely unclear whether life-saving treatment is in the best interest of the child who is born at the border of viability, making a balanced approach essential to promoting the best interest of the child.

Ethical principles, such as a right to life, net benefit, or the best interest of the child, can be viewed as instrumental in emphasizing aspects that should have a central role in such decisions. A pragmatic approach is to balance such aspects precisely and arrive at guidelines and regulations that make medical practice manageable, consistent, and perceived to be legitimate inside and outside the NICU.

In the Danish perspective, a framing of the question of when to resuscitate in terms of the rights of the infant is myopic. Not to save a newborn child is a moral loss, for sure. But in the special situation of the extremely premature child, we have to take responsibility for the misery and hardship that is produced for the child and the family. Thus, an ethics of rights falls short of the standards of an ethics of responsibility.

In a Scandinavian perspective, neonatal practice in Denmark has been the least interventionist. There has been an ongoing discussion for decades on how right it is to interfere with the course of life at the border of viability and when life-saving treatment becomes an undue technologizing of neonatal care.

The relevant question in the Danish setting is how to balance the inherent worth and the expected quality of life of the extremely premature child. How is this balance achieved and by whom? As stated in the Danish report in this volume, the Danish approach is characterized by a culture of family-oriented care and the acknowledgement of competent parenting.² The family is in focus, both as decision-makers and recipients of care. The family has to be trusted, helped, and given some discretion to assess how best to proceed when a child is born extremely premature.

In this article, I have identified 3 ways of justifying neonatal policies of when to provide life-saving treatment to infants who are born extremely premature: by appealing to universal principles or rights, to considerations of the best interests of the children, or to considerations of the best interests of the families. Moreover, I have suggested how these justifications can be found in the Scandinavian countries.

GA

gestational age

HCP

health care personnel

UN

United Nations

I thank John Lantos for his useful suggestions for improving the article and Berge Solberg for thorough discussions of key points in this article.