Moral Distress Common in Pediatric ECMO Cases

By Stacey Kusterbeck

At Boston Children’s Hospital, 4.5% of pediatric extracorporeal membrane oxygenation (ECMO) cases involved ethics consults, found authors of a recent study.¹

“Our group viewed ECMO as a ‘disruptive’ life-sustaining technology — a new technology that disrupts how care is provided. It offers substantial clinical benefit, but with significant ethical implications,” says Bryan Siegel, MD, the study’s lead author and an attending in the Department of Cardiology at Boston Children’s Hospital.

ECMO is resource-intensive, often offered in circumstances of high diagnostic uncertainty and carrying significant morbidity and mortality. “We speculated that — as with other historic disruptive life-sustaining technologies such as ventilators and dialysis — as the new technology improves and public awareness increases, there is likely to be an increase in ethical uncertainty and conflict around whether ECMO ought to be initiated or continued and moral distress around the use of this technology,” says Siegel. The researchers explored the prevalence and types of ethical issues around ECMO to inform how to approach ECMO decision-making and preventive ethics initiatives.

Siegel and colleagues analyzed 601 ECMO cases and 225 patients with ethics consults over a 10-year period (2012-2021). The percentage of ECMO patients who received ethics consultations (4.5%) was lower than what has been reported in the adult literature. However, patients who received ECMO made up a significant portion (12%) of all the ethics consultations that were performed during that time period.

ECMO cases with ethics consults were associated with multiple ECMO runs, more than six procedures or complications, longer length of stay in the ICU (> 52 days), longer ECMO duration (> 160 hours), cardiac admissions, higher mortality, and decannulation outcome. The most common ethical questions were about end-of-life care, discontinuation of ECMO, and decision-making.

“Knowledge of these characteristics associated with ethics consultation can allow clinicians to more effectively use available tools and resources,” suggests Lisa Taylor, JD, MS, HEC-C, another of the study authors and a clinical ethicist at Boston Children’s Hospital. These include palliative care, regular interdisciplinary, and/or family meetings. Those approaches ensure families are as well-informed as possible and engage in shared decision-making.

Most (82%) of the ethics consults involved moral distress. “This has particularly significant ethical implications for clinicians,” says Taylor. Additional research could explore whether early identification of ethical conflict and uncertainty around ECMO, and timely intervention by ethicists, can mitigate moral distress, suggest the authors.

“As pediatric providers and ethicists, we are accustomed to deferring to parents’ preferences with respect to life-sustaining interventions that some consider to be disproportionately burdensome,” notes Taylor. Because ECMO is a newer, resource-intensive technology, clinicians have relied on clinical judgment to make ECMO candidacy decisions. For example, in some cases ECMO is not appropriate as a bridge to prolonging life in the ICU with no other benefit. “As the technology has improved and public awareness of the utility of ECMO has increased, there is likely to be greater conflict and a need for shared decision-making around these decisions,” says Taylor.

Preventive ethics is likely the best means for addressing many of the issues brought on by a therapy like ECMO, conclude the authors. “Hopefully, our research can assist clinicians in anticipating greater parental involvement and scrutiny, and in mitigating provider moral distress around ECMO decision-making,” offers Taylor.

REFERENCE

Siegel B, Taylor LS, Alizadeh F, et al. Formal ethics consultation in extracorporeal membrane oxygenation patients: A single-center retrospective cohort of a quaternary pediatric hospital. Pediatr Crit Care Med 2024 Jan 9. doi: 10.1097/PCC.0000000000003422. [Online ahead of print].