Just care for patients in different neonatal intensive care units: a tenable goal?

By Dalia Feltman, MD, MA

One look at a healthcare billboard will reveal that hospitals want to appear unique—one touts superior surgical care; another state-of-the-art cancer treatments.  Quality of medical staff and the array of services offered are not what I mean here by “equal opportunities.” What I’ll examine in detail using two neonatology studies is the variation of initiating and withdrawing life-sustaining treatments for critically-ill newborns between medical centers. I’ll argue that from a principlist standpoint, because extremely premature or critically-ill newborns are completely incapable of autonomous decision-making, and beneficence and non-maleficence are extremely difficult to judge, the remaining principle, justice, is an especially important goal for these patients.

Because newborns lack autonomy, we rely on parents and physicians to make medical decisions in their best interests.  This means weighing benefits and burdens of treatments to maximize beneficence and non-maleficence. However, for newborns whose survival or neurodevelopmental outcomes are ambiguous, life-sustaining treatments such as breathing support, chest compressions, and cardiac medications may seem burdensome. The difficulty in finding beneficent, non-maleficent options is of interest in many neonatology bioethics inquiries. However, evidence that some neonatal intensive care units (NICU’s) are more aggressive in providing life-sustaining treatments than others leads to a different arena of questions, concerning whether justice is a tenable goal for these patients.

Treatments after birth
Based on high chances for death and neurologic impairment, being born at 22 to 24 weeks’ gestation is considered “periviable.”  Professional guidelines from groups such as the American Academy of Pediatrics (AAP) advise: 1.) For babies born into circumstances incompatible with survival, comfort care rather than delivery room resuscitation should be provided; 2.) For a baby with high chances of poor outcome, best estimates of survival and morbidity should be conveyed to parents to inform their decision on resuscitation; and 3.) When good outcomes are likely, resuscitation is indicated with continued reassessment of treatment benefits in collaboration with parents.1

Revasy, et al. examine outcomes for extreme preterm infants born at 24 hospitals.2  While not representative of all NICUs, this is a robust sample of nearly 5000 preterm infants born between 22 and 26 weeks with an impressively high percentage of patients followed until 18-22 months. These authors report survival and neurodevelopmental outcomes for the entire sample of 22-week preterm infants as worse than for the subgroup of patients receiving life-sustaining treatments. Similar trends were noted for each gestational week until 25 and 26 weeks, because babies born 25 weeks and older all received active treatment. None of this is surprising, since we know these babies’ immature lungs require support to survive past a few hours or days. Furthermore, the more mature the baby, the more the benefits of treatment outweigh risks, so life-sustaining treatments are provided. What has been impressive, however, to the authors and the neonatology community, is the fact that, controlling for other patient factors, the hospital itself was what most predicted provision of life-sustaining treatments vs. comfort care, and therefore mortality and morbidity (for without survival there can be no morbidity). The earlier the gestational age of the baby, the more profound the inter-hospital variability, until 25 weeks.

Treatments before death

Another article compared circumstances around deaths of NICU patients in four centers—two Midwestern, one Canadian, and one in the Netherlands.3  In all but one center, most “unstable” neonates died with life-sustaining treatments withdrawn. That same outlier center had higher rates of babies dying after chest compressions than the other three. No baby died in the delivery room at that center, while the other three reported similar rates of deaths in the delivery room.

Directions for future study

Equal opportunities will only be possible when we understand why hospitals have such different rates of providing life-sustaining treatments. What options are offered to parents?  Do parents’ cultural differences account for hospital variability? How do obstetricians influence these decisions?

One might argue that if there’s no clear-cut answer on what’s in a certain type of preterm infant’s best interests, why strive for uniformity? To ensure NICU patients receive a just experience, options of comfort care and offering life-sustaining treatments need to be consistently explored with parents in truly shared decision making. A new clinical report from the AAP encourages institutions to create approaches to threatened deliveries at 22 to 24 weeks.4  One possibility for institutional variability is that centers have created strategies to promote just opportunities for their patients. If so, these studies are a call to foster another level of agreement—across hospitals. Otherwise, it may only be where the ambulance brings a prematurely-laboring woman that might determine her baby’s outcome.

Dalia Feltman, MD, MA, is a 2015 graduate of the Loyola MA program in Bioethics and Health Policy.  She is a neonatologist at Evanston Hospital in Evanston, IL and a Clinician Educator at the University of Chicago Pritzker School of Medicine, Chicago, IL

1. Batton DG.  Antenatal counseling regarding resuscitation at an extremely low gestational age.  Pediatrics 2009;124:422–427.
2. Rysavy MA, Lei L, Bell EF, Das A, Hintz SR, Stoll BJ, et al.  Between-Hospital Variation in Treatment and Outcomes in Extremely Preterm Infants.  N Engl J Med 2015;372(19):1801-11.
3. Verhagen AA, Janvier A, Leuthner SR, Andrews B, Lagatta J, Bos AF, Meadow W.  Categorizing Neonatal Deaths: A Cross-Cultural Study in the United States, Canada, and The Netherlands.  J Pediatr 2010 Jan;156(1):33-7.
4. Cummings J, AAP Committee on Fetus and Newborn.  Antenatal Counseling Regarding Resuscit