An ethics piece published in Pediatrics explored the matter of child advocacy in health care and developed a decision-making framework for cases of disagreement between the medical team and the parents.

In this Ethics Round, clinicians offered perspective on a specific case regarding a mother who requested discontinuation of life-sustaining treatment for her infant after 7 months of care from the neonatal intensive care unit (NICU). The infant, “SW,” was born at 23 weeks with myriad medical problems and was originally recommended for palliation. The mother, however, rejected this recommendation and requested “aggressive treatment.”

Over time, the infant’s condition stabilized, and though doctors acknowledged the high long-term risk for “severe impairment,” they began preparing for discharge at 7 months; however, the mother refused to participate in training to care for her infant at home and instead requested that the child be placed in a care facility. When no such facility could be located, the mother requested discontinuation of life-sustaining treatment. Many staff in the NICU felt that the mother’s refusal to receive training or participate actively in her child’s treatment “disqualified her as the… decision-maker” in this situation. Several contributors were asked to explore the ethics of life-sustaining treatment withdrawal in this situation and assess the appropriateness of the mother as the primary decision maker.

Jason Higginson, MD, MA, Hellen Ransom, DHCE, Matthew Ledoux, MD, and Clint Parker, MD, PhD, of the departments of pediatrics and bioethics and interdisciplinary studies at the Brody School of Medicine at East Carolina University in Greenville, North Carolina, offered first comment on the case, asserting that the appropriate decision in such situations is the “best interest standard.” Because of SW’s severe condition, the lack of appropriate treatment facilities, and the refusal of the mother to provide care, doctors concluded that removing life-sustaining treatment would be “morally reasonable.” Though such an outcome “seems unfair [and] unfortunate,” the lack of existing resources to accommodate SW and maximize her quality of life inform the appropriateness of life-sustaining treatment withdrawal.

Kellie R. Lang, JD, MD, and Micah Hester, PhD, of the Kaiser Permanente South Bay Medical Center in Harbor City, California, and the Division of Medical Humanities at the University of Arkansas for Medical Sciences in Little Rock, Arkansas, respectively, addressed the concept of child advocacy, and emphasized that although childcare is the primary objective of NICU personnel, they must also consider the circumstances of the mother before dismissing her decision to withdraw life-sustaining treatment.

Though the mother was initially considered an “unfit… decision-maker” based on her being “seldom present” in the NICU, ethicists argued that this could be for many reasons — not necessarily disinterest in SW’s well-being. The lack of involvement from other family members highlighted the potentially difficult situation for the mother. That there existed a barrier of communication between the mother and the NICU team was not solely the responsibility of the mother. They asserted that in cases of disagreement, clinicians must communicate clearly with the parent to learn more about the “reasons… [and] values” behind any decision making. Such an open approach could facilitate discussion on the options for the child, allowing for clinicians and parents alike to arrive at an agreement.  

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This Ethics Round addressed the nuanced ethics of life-sustaining treatment decisions for children when parents and clinicians disagree. Experts suggested a framework in which clinicians consider both the long-term outcomes for the child and the parents’ motives to arrive at the best therapeutic option; such situations are highly complex and deserve due consideration of all facets from all involved.

Reference

Higginson J, Lang KR, Ransom H, et al. When a mother changes her mind about a DNR [published online June 21, 2018]. Pediatrics. doi:10.1542/peds.2017-2946