Mari Ohnstad

I would like to share a perspective that Professor Emeritus Thor Willy Ruud Hansen and I recently published in Dagens Medisin, a Norwegian medical journal. Given the relevance to this forum, I have translated the article from Norwegian to English. Here is our opinion piece: Treatment of Extremely Premature Babies Raises Ethical Dilemmas The treatment of extremely premature babies raises ethical dilemmas that challenge us as healthcare professionals, parents, and society. The debate surrounding life-saving treatment is marked by strong opinions and judgments. It is essential to consider the broad ethical, value-based, and legal perspectives that underpin these decisions, not just the medical ones. Treatment of Immature Newborns Extremely premature babies face significant challenges. Without intensive care, very few will survive. The treatment supports functions in immature organ systems such as the lungs, heart, immune system, and digestion. This requires advanced medical care for several weeks. The question of where the limits lie and who has the right to treatment is continuously debated, both nationally and internationally. In Norway, gestational age and the baby's vitality at birth are used as factors in determining whether treatment should be offered. However, both of these are controversial and of limited value. Other factors besides gestational age also influence outcomes—such as the baby's gender, infections, growth, and other pregnancy-related influences, and whether the mother received treatment that promotes the maturation of the baby's lungs. Ethical Reflection on Multiple Levels The ethics of treating extremely premature babies operate on multiple levels. The macro level concerns societal priorities and how we value the lives of the premature. Are we using enough resources and providing enough support in communities to follow up on these children after intensive care? The meso level focuses on department culture and shared guidelines—are we a team with a common understanding of treatment goals? The micro level touches on individual values and morals—how does this affect our interactions with patients and their families? Who Has the Right to Treatment? Extremely premature babies have the legal right to treatment just like other patient groups. For many other patient groups with poor prognoses, we rarely question whether they should be offered life-saving treatment. The fundamental ethical question then becomes: Why do we think differently about the treatment of extremely premature babies? Quality of Life and the Value of Human Life A significant dimension in this debate is the quality of life and perceptions of disabilities. Extremely premature babies are at increased risk for diseases and disabilities. We should not downplay this, but an honest dialogue must also acknowledge the fact that the majority experience normal development or mild-to-moderate disabilities. Perceptions of what disability means in people’s lives can vary greatly between healthcare professionals and both parents and people living with such challenges. Studies show that parents of premature babies with disabilities often view the child's life as valuable, regardless of disability, while healthcare professionals may be more inclined to see severe disability as a significant burden. It is crucial that we as healthcare professionals reflect on our own attitudes and how they may influence the decisions we make on behalf of our patients. Parents' Role in Decision Making Shared decision-making means that decisions are made jointly with the parents. This is not just about informing, but also about listening to the parents' values, concerns, and hopes for their child. For many parents, the period of illness for their child is marked by shock, uncertainty, and fear for the future. How we as healthcare professionals present information about survival and risk can influence their choices. It is our duty to provide a balanced presentation and support parents in their decisions. Difficult choices often involve values just as much as medical facts. Prioritization and Use of Resources Extremely premature babies require extensive medical support, which entails significant costs for both hospitals and society. Some argue that intensive care for these babies is too expensive and not cost-effective. However, as a society (Norway), we spend much larger resources on treating people at the other end of the life cycle without questioning cost-effectiveness to the same degree. Perhaps we should instead ask what the human costs are of not giving these babies a chance at life? And how many children who could have had good lives are we "sacrificing" if we decide on a general policy of withholding treatment to spare the minority who survive with disabilities? The debate on the treatment of extremely premature babies must reflect a broader view of ethics, rights, and societal responsibility. It is about what kind of society we want to be and how we value life, even the most vulnerable. Extremely premature babies deserve the same respect, care, and medical consideration as all other patients. Our task as healthcare professionals is to meet these children and their families with empathy, knowledge, and a willingness to do what is best for each individual patient.