Blowing the whistle: moral distress and advocacy for preterm infants and their families

Although the majority of extremely preterm infants now survive with good outcomes, some of these fragile babies die or survive with severe disabilities. In the past, physicians were appropriately cautious about treating all preterm infants because there were no enough data regarding long-term outcomes. This is no longer true. We now understand which prognostic factors predict good outcomes and the limitations of those predictions. Gestational age is a powerful predictor of survival. But, for babies born between 22 and 25 weeks, gestational age is not very sensitive or specific in predicting disability among survivors 1. We also know that, even among babies with disabilities, the degree of disability is not associated with self-reported quality of life in either later childhood or adulthood 2. We know that the limit of viability is around 22 weeks of gestational age and is similar in all industrialised countries. Yet, we also know that there is tremendous variation in the provision of intensive care for babies born at 22–25 weeks of gestation and in their survival rates. The problem has shifted from one of the uncertainties regarding outcomes to one of the philosophies. Which outcomes are good enough to justify intensive care treatment? Which outcome is worse than death? When is 'giving a chance' not indicated? Indeed, values, experience and overall outlook on life are embedded in the decision-making process. In an attempt to simplify those decisions, many providers have developed policies at local, regional and national levels that are often tailored around completed weeks of gestation. The goal of these policies for extremely preterm infants is to avoid provider variations, increase transparency for parents and make the process simpler. Simpler is not always better. In his article "Periviability and the 'god committee'", Dr Marmion, an obstetrician, reports his negative experience, amounting to moral distress, with guidelines developed at his centre 3. Moral distress occurred because the 'life and death' guidelines required him to behave in ways that directly conflicted with his own values 3. His experience is not unique 4. It is difficult to achieve a consensus on such difficult questions 4. Thresholds for recommending comfort care may not seem acceptable to all physicians who have to live with 'the party line' 3. How, then, should providers respond to recommendations that they find morally objectionable? Marmion's moral distress is a result of witnessing neonates' death when they were not given a chance to receive intensive care. Further, he had to witness discussions with families that he perceived as biased and unduly pessimistic. Many parents and providers have written about their own negative reactions to the sort of counselling advocated by Kaempf's group 4-6. Parents of preterm infants often recount hearing about all the risks their child face and all the things that their child may never be able to do, but not what they may be able to 5, 6. Some parents realise, after their child's death, that they were ill-informed and that their child, who was not offered intensive care, could have survived 5. Parents are generally not informed about the evidence regarding the quality of life of surviving infants. Families are also given unsubstantiated negative predictions regarding the ways in which preterm infants who survive cause damage to couples, families and siblings. They are not told of the many stories, by parents, of ways in which such children can make families stronger 5, 7. They are only told that their life will be destroyed, not how it can be rebuilt, or how the experience of caring for a fragile baby can lead to positive transformations 7. Given what we now know now, it is time to stop considering gestational age as the sole factor that determines which babies should be treated. Gestational age should be one of the many factors that doctors consider in deciding whether or not intensive care is likely to be beneficial. Not all of these factors are evident prior to delivery, requiring ongoing sensitive communication and decision-making with families at or after birth. How can we make this process better? It will not be simple and quick, and it should not be. We are not of the opinion that we need specific guidelines only for preterm infants. We need all providers to be adequately educated, including ethical decision-making and communicating with families 4. Neonatology would then be consistent with all other areas of medicine, including many that deal with difficult ethical decisions. In no other area do doctors rely on simple rules for complicated end-of-life decisions. We also need neonatal and perinatal providers to be sensitive to their own values and potential fears that may drive their decision-making. Maybe that is too much to ask. If professional societies insist that guidelines are necessary, then they should at least ensure that they are based on actual outcome data and that parents are made aware of the ways in which that data are being used. That does not happen today. Instead, different centres seem to rely on the same medical literature to come to different conclusions and recommendations. In a recent study from the NICHD Neonatal Research Network, some hospitals provided active treatment to all babies born at 22 weeks, some provided active treatment to none of such babies, and other hospitals were in between 8. A similar variation of practice exists at 23 weeks and at 24 weeks in some centres and/or countries. These variations raise an interesting question about informed consent and transparency. What, exactly, should parents be told about chances for survival? Should they be presented with only outcome data for the hospital, or region, or country where they live? Should they be told that survival at 23 weeks in this centre is much lower than other centres around? There is no neutral ground. Whatever a doctor chooses to reveal – or to conceal – will inevitably frame the decision for parents. Any guideline proposing recommendations for withholding or withdrawing life-saving interventions should be explicit about the ethically appropriate reasons for these decisions. Are these criteria based on a low survival and if yes, what is considered to be a low survival? If on the burden of interventions, which interventions and how is the burden to be evaluated? If on poor outcomes, what outcomes are considered to be worse than death, and to whom? Parents of preterm infants have published recommendations on how to approach such prenatal conversations 5. They recommend that This would enable providers to respect the interests of neonates and their families. New horizons for research should seek to understand and to rectify the inequities that exist between the care offered to extremely preterm infants and to similar, fragile populations 10. None of the authors have a conflict of interest.