Data on pediatric ethics consultation, once scarce, are growing. “But many reports are based on small sample sizes or specialized populations,” says Pamela G. Nathanson, MBE, HEC-C, program manager and clinical ethics consultant in the department of medical ethics at Children’s Hospital of Philadelphia.1-3
To gain additional insight, Nathanson and colleagues analyzed 245 pediatric clinical ethics consultations conducted from 2013 to 2018.4 They identified the two most prevalent reasons for consult requests: intensity or limitation of treatment (38.8%) and treatment adherence or refusal (31%).
The ethical issues that commonly came up were benefits vs. harms of treatment, decision-making, and autonomy. Whereas previous studies concerned clinical situations that resulted in consults and identified ethical concerns, Nathanson and colleagues went further.
“We also collected data about an expanded set of key emotional, relational, and pragmatic attributes,” Nathanson explains.
The authors wanted to determine whether the attributes identified in the ethics consults (e.g., lack of knowledge, miscommunication, avoidance, or discord) were associated with the clinical problems, ethical considerations, or type of consult process used.
“We were interested to find that certain contextual attributes were significantly associated with specific types of clinical problems, and also with the type of consult process used,” Nathanson says.
“Articulate disagreement” was much more likely to be present in consults related to requests outside the standard of care. “Nonadherence” was much less likely to be present in cases related to withholding or withdrawing life-sustaining treatment or moral distress. “Avoidance” was more likely to be present in cases of withholding or withdrawing life-sustaining treatment and moral distress, and less likely to be present in cases of nonadherence or patient safety.
The findings reinforced the usefulness of identifying and paying attention to these contextual attributes. “It can provide important insights regarding how to best approach a particular consult,” Nathanson says.
The researchers also tracked the process used for each consult: Single conversations, meetings with the clinical team, separate meetings with the clinical team and the patient or family, or combined meetings with all stakeholders.
“For instance, if stakeholders are angry, it might require multiple separate meetings or a mediation in order to identify some common ground,” Nathanson observes.
In contrast, large meetings with all parties sharing their feelings might be the best approach in cases involving significant conflict or a general sense of discontent, or where the parties are upset or at a loss for what to do next. “Including these unique elements in our analysis added to the pediatric ethics consultation literature,” Nathanson says.
At St. Jude Children’s Research Hospital in Memphis, most ethics consults involve helping the medical team determine what is a medically reasonable plan of care in seriously ill children with poor prognosis.
“Some cases centered on clinicians’ obligation to offer a burdensome therapy when the potential for benefit is very low,” says Liza-Marie Johnson, MD, MPH, MSB, chair and bioethics consultant of the hospital ethics committee.
In other cases, parents might refuse chemotherapy or blood transfusions. Staff struggle to determine if the refusal should be respected, or if further action is warranted to protect the child from preventable harm.
“This is different than common issues in adults, which often include assistance with decision-making in patients without capacity and recommendations around capacity assessments,” Johnson says.
Many pediatric ethics cases focus on complex medical decision-making, according to Danielle Novetsky Friedman, MD, MS, a pediatrician at Memorial Sloan Kettering in New York. Pediatric cases involve, at a minimum, three stakeholders: The patient, the parents, and the healthcare team. “This decision-making triad can lead to a multitude of ethical quandaries,” Friedman says.
Ethicists determine how best to proceed when parents do not agree on the best course of treatment for their child. Sometimes, the problem is minor patients’ wishes conflict with their parents’ wishes. Friedman points to the two most common ethical issues in the pediatric oncology setting: clinician’s ethical obligations if families want nonbeneficial treatment and decision-making on resuscitation preferences.
“Communication conflicts were an important and frequent contextual issue that [often] impacted these consultations,” Friedman says.
For ethicists educated in predominantly adult settings, additional training in communication on pediatric cases can be beneficial. “These cases require some reframing from traditional modes of ethics consultation focusing on adults,” Friedman says.
The pediatric patient often is not the ultimate decision-maker, but should still be involved in conversations around care in a developmentally appropriate way. “This can be a complex balancing act for ethicists, even among those trained in pediatric settings,” Friedman says.
- Thomas SM, Ford PJ, Weise KL, et al. Not just little adults: A review of 102 paediatric ethics consultations. Acta Paediatr 2015;104:529-534.
- Winter MC, Friedman DN, McCabe MS, Voigt LP. Content review of pediatric ethics consultations at a cancer center. Pediatr Blood Cancer 2019;66:e27617.
- Johnson LM, Church CL, Metzger M, Baker JN. Ethics consultation in pediatrics: Long-term experience from a pediatric oncology center. Am J Bioeth 2015;15:3-17.
- Nathanson PG, Walter JK, McKlindon DD, Feudtner C. Relational, emotional, and pragmatic attributes of ethics consultations at a children’s hospital. Pediatrics 2021;147:e20201087.