By Stacey Kusterbeck
Pediatric ethics consultations are very infrequent and involve more diverse issues than ethics consults for adult patients. This makes it difficult to identify trends and changes.
“It can be challenging to capture particular topics and themes in pediatric ethics consults,” says Richard James, MLS, MBE, an academic support librarian at Nemours Children’s Health.
James and colleagues conducted a study to examine trends that were coming up in pediatric ethics consults and to see how those ethics consults were changing over time.
“There are very few published studies that look at ethics consultations in pediatric hospitals. We wanted to add to the knowledge base and to understand the landscape at our institution,” says James.
The researchers examined records of 107 clinical ethics consultations at Nemours Children’s Health from 2000-2020.1 “We were fortunate because the ethics consultation records were often lengthy and narratively rich,” says James. This made it possible for the researchers to glean deeper insights into the issues and themes of the consults. Some key findings about pediatric ethics consults:
• Critical care (particularly the pediatric intensive care unit and neonatal intensive care unit [NICU]) was the most common setting for ethics consultations.
“The severity of illness and uncertainty about healthcare outcomes when receiving treatment in these settings drives this pattern,” says James.
• End-of-life decision-making in severe neurological injury cases was the most common issue in ethics consults.
Cases with a neurologic primary diagnosis comprised about one-quarter of all ethics consults. In this diagnostic category, half of cases involved end-of-life care and/or requests to withdraw life-sustaining therapies. Three of those cases involved requests for compassionate extubation. Two cases involved requests to withdraw nutrition and hydration. Most of the consults were requested not because of a conflict between the family and the clinical team, but to ensure that there was ethical consensus in the decision-making process. Five of six cases with an oncology-related diagnosis involved a conflict between parents and clinicians over goals of care or treatment intensity. “Families wanted to ensure that their goals for care were clearly established and communicated to the professionals caring for their children,” says James.
• Moral distress came up more frequently in ethics consults in recent years.
“This reflects a greater awareness and attention to the many impacts of unaddressed moral distress in medical and nursing education and professional culture,” says James.
Overall, 31% of cases explicitly indicated that moral distress was a factor. In those cases, nurses requested the consult 36% of the time (compared to 30% of cases being requested by physicians). “This suggests that there are different understandings and motivating factors in how various types of clinicians perceive the role of ethics committees and the purpose of ethics consultations. It particularly illustrates the significance of nurses’ moral distress as a factor that ethics committees need to address in their processes,” says James.
• There was a higher rate of parent/family involvement in ethics consultation initiations than in other previous studies.
“This may be because this service is transparent and visible in our patient-facing resources, and there are no barriers to requesting a consultation,” says James. Clinicians requested most (83%) of consults; and parents or other caregivers requested 11% of consults, with a few consults requested by others such as genetic counselors or social workers. Although nurses requested only 16% of ethics consults overall, half of cases in the NICU were requested by nurses.
• On average, only two ethics consults were requested annually.
Previous studies also have found a low frequency of ethics consults in pediatric hospitals. “Some researchers have suggested that there are characteristics of pediatric hospital care, such as stronger interprofessional communication and an emphasis on integrating family members more immediately and fundamentally into decision-making, that may head off some of the crisis points that might create ethics consultations in adult medicine,” says James. Patients’ decision-making competency, which frequently comes up in adult ethics consults, is not as pertinent or frequent in pediatrics.
Increasing the number of pediatric consults is not necessarily a metric to strive for, in and of itself.
“However, the effectiveness of consultations could be positively impacted,” says James.
This can be done by ensuring that different groups within the hospital, as well as patients and family members, understand the role and scope of the ethics committee. The goal is for everyone involved in the ethics consult to understand that the process is meant to influence and improve the immediate care of patients. Ultimately, ethicists aim to alleviate the distress and injury caused by ethically challenging situations.
Increasing institutional support for ethics work also is important. “Doing so could enable ethics committees to engage in more substantial interprofessional education, and contribute to ethical culture in their hospitals,” offers James.
- James R, Carroll RS, Miller JM. Analysis of 20 years of ethics consultations at a U.S. children’s hospital. J Clin Ethics 2024;35:107-118.
