By Stacey Kusterbeck
As a medical student at the University of Michigan, Samantha Lyons, MD, HEC-C, regularly attended both pediatric and adult ethics committee meetings. Lyons noticed that for young adults, different approaches were used based on whether the patient presented to the pediatric or adult setting. In general, pediatric care was more family-oriented, whereas adult care placed more emphasis on patients being autonomous and independent.
At Michigan Medicine, the ethics consult service rounds in both the adult and pediatric settings. “Anecdotally, we noticed differences in approaches to how early adult patients were cared for, likely based on philosophical and practice differences between pediatric and adult providers,” observes Janice Firn, PhD, MSW, HEC-C, a clinical ethicist at Michigan Medicine and Center for Bioethics and Social Sciences in Medicine.
Lyons, Firn, and colleagues conducted a study to learn the primary ethical issues and related contextual features for ethics consults for patients aged 18-26 years occurring in pediatric and adult settings.1 The researchers analyzed 46 ethics consultation notes (30 adult and 16 pediatric) for 40 unique patients from 2016-2020. Some of the patients were cared for in the pediatric setting, and others were seen in the adult setting.
For patients cared for in the adult setting, the most common ethical issue was refusal of recommended treatment. The most common contextual issues were communication disputes or conflicts between the patient and staff.
For patients cared for in the pediatric setting, the most common ethical issue was goals of care. The most common contextual feature was concern about quality of life. Overall, most (63%) consults involved an incapacitated patient with a surrogate making decisions on the patient’s behalf. In these cases, family members were acting as surrogates (either as next of kin, a formal durable power of attorney for healthcare, or a court-appointed legal guardian). The presence of severe, persistent mental illness, active substance use disorder, or cognitive disabilities made it difficult to employ substituted judgment in about one-third (31%) of those consults.
Lyons currently is a resident physician in family medicine at Oregon Health & Science University, where there is a single ethics committee for both pediatric and adult patients. Lyons says that the study findings offer some targeted areas of quality improvement in ethics consultation as it pertains to young adults. For example, ethics services can consider the structure of their committees and the backgrounds of their ethicists.
“When dividing an ethics committee into pediatric and adult subgroups, you are missing this particular patient panel that traverses both spaces,” observes Lyons.
Communication challenges were common in both adult and pediatric settings. Declining recommended treatment was the primary ethical issue. “Given these findings, ethicists may benefit from education related to adolescent and young adult development,” suggests Firn. Ethicists also could be a resource for healthcare professionals regarding adolescent and young adult decision-making, the role of the surrogate, and standards for surrogate decision-making.
The involvement of ethicists is especially important if there are circumstances that could make employing substituted judgment difficult.
“In both adult and pediatric settings, ethicists can help to support the autonomy of the patient and explore how the patient wants the family involved,” says Firn.
For instance, ethicists can explore who the patient wants to share information with and who they want involved with decisions. Ethicists can clarify that, while parents were in the decision-making role previously, the patient now is the primary decision-maker. “However, capacitated persons can defer decision-making to others, such as their parents,” notes Firn.
Ethicists can help everyone involved in the case to see the patient as both embedded in the family and, at the same time, separate from the family. This is a balance that differs from patient to patient and will change over time as the patient ages.
“Periodic check-ins to verify the level of family involvement would be helpful, to ensure the patient’s wishes are being followed,” advises Firn.
- Lyons S, Freigeh GE, Matula KA, Firn JI. Liminal space: A retrospective content analysis of ethics con-sultation for patients aged 18-26. J Adolesc Health 2024; Jul 13. doi: 10.1016/j.jadohealth.2024.05.005. [Online ahead of print].
