Pediatric Oncology Ethics Consults Few in Number, Limited in Scope
Just 35 ethics consultations were performed for 32 patients over 10 years at a specialty cancer hospital, according to a recent analysis.1
“The ethical issues that arise in pediatric oncology are distinct, and we wanted to characterize them based on our institutional experience,” says Meredith C. Winter, MD, the study’s lead author, currently a pediatric critical care fellow in the department of anesthesiology and critical care medicine at Children’s Hospital Los Angeles.
Ethics was most commonly called for cases involving resuscitation preferences (26% of consults) and conflicts over clinicians’ obligation to provide treatment that was viewed as nonbeneficial (29% of consults). Two issues came up repeatedly during consults:
• Physicians questioned their obligation to provide potentially toxic treatment for patients with a history of poor compliance. Clinicians were offering stem cell transplants or intensive chemotherapy to patients who had missed medical appointments and not taken prescribed antibiotics.
“Concerns were raised that potential toxicities could outweigh any potential benefit,” Winter explains. These included life-threatening infections, hemolysis, and neutropenia.
• Clinicians wanted to know whether invasive procedures were ethically justified. In one case, clinicians were offering a ventriculoperitoneal shunt to improve a terminal patient’s life quality. The mortality risk was high, and the benefit was murky.
Winter notes it is common to weigh benefits and risks regarding a patient’s care goals. Obviously, she adds, this decision can be especially challenging.
Ethics consults for adults involve two parties: the healthcare team and the autonomous patient. For pediatric cases, there are three involved parties: the patient, the family, and the healthcare team. With an extra party, Winter observes that making decisions in pediatric cases can be even more complicated.
However, research on pediatric ethics consultations is scarce. Winter reports that existing studies concern withdrawing life-sustaining treatment after traumatic events, extremely premature neonates, and children with life-limiting syndromes or congenital problems.
The authors of a previous study also studied issues prompting ethics consultations in pediatric oncology. They found most consults occurred in the outpatient setting. Few involved limitation of life-sustaining treatment.2
In contrast, in her study, Winter says nearly 90% of ethics consultations happened in inpatient settings. Three-quarters of these occurred in the ICU. Further, Winter observes ethics consultations were called for patients only with metastatic, recurrent, or refractory disease.
No consultations happened at diagnosis or during survivorship, periods that are heavy with ethical issues. Fertility concerns, genetic testing, clinical trials, chronic pain management, and long-term effects of toxic treatments are some examples.
These findings may suggest clinicians do not recognize ethical dilemmas other than treatment-related decision-making and care goals at life’s end. Winter suggests offer more education to help medical teams identify important ethical issues and to call on the proper resources to address those issues when needed.
Memorial Sloan Kettering’s Ethics Committee recently implemented an annual ethics committee retreat and an ethics seminar series for those who treat pediatric patients. “Education should increase awareness of resources that are available to support providers who face ethical dilemmas,” Winter says.
- Winter MC, Friedman DN, McCabe MS, et al. 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.
Research findings may suggest clinicians do not recognize ethical dilemmas other than treatment-related decision-making and care goals at life’s end. More education could help medical teams identify important ethical issues and to call on the proper resources to address those issues when needed.
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