Pediatric Hematology/Oncology Trainees Want Ethics Expertise
September 1, 2023 3 minutes read
Lately, Dan Benedetti, MD, MA, has noticed more pediatric hematology/oncology (PHO) trainees expressing interest in bioethics. Many of the trainees wanted to integrate clinical ethics or ethics scholarship into their academic careers in some way and sought guidance on how to do so.
Benedetti discussed this with other PHO ethicists. “While there seemed to be growing interest, there were only 10 or 20 people who we knew of who were board-certified pediatric hematologists/oncologists with ethics training or who were engaged in scholarship on ethics topics,” says Benedetti, a board-certified pediatric hematologist/oncologist and core faculty at the Center for Biomedical Ethics and Society at Vanderbilt University.
Benedetti and colleagues put together a daylong retreat during which PHO ethicists discussed ethics resources at their respective institutions. At some hospitals, ethics work was protected time; at others, ethics was something consultants were expected to handle in addition to a clinical role. Funding for ethics work, and training opportunities for interested PHO trainees, also varied. “We felt it was important to ask whether the field of PHO needs more ethicists. As we talked about the countless ‘everyday ethics’ issues that are encountered in clinical practice, we felt the answer was a resounding ‘yes,’” Benedetti says.
The group discussed how they could best support trainees with an ethics interest, by providing mentorship, advice, and opportunities for collaboration.1 “In terms of the training that is needed for PHO trainees interested in bioethics, it really depends on how someone wants to integrate bioethics into their careers,” Benedetti explains.
Ideally, the authors concluded, ethics education would be integrated into all PHO training programs. That way, every practicing PHO would have some expertise in responding to common ethical challenges in the field. “Beyond that, if someone wants to be a clinical ethics consultant, they will need some advanced training in clinical ethics consultation,” Benedetti adds.
Likewise, PHO trainees who want to conduct ethics research should look for an advanced degree program and mentored research experiences. “While there are fellowship programs that can provide fairly comprehensive training in each of these domains, they exist only at a few institutions around the country,” Benedetti notes.
Benedetti observes common ethical issues PHO subspecialists encounter:
• Requests to withhold information from a child with cancer, such as the diagnosis or a terminal prognosis;
• Refusal of recommended cancer treatment;
• How to respond to requests for more treatment once there are no known effective options for a child’s cancer.
“Unfortunately, this is a very challenging topic for our field, and the situations are too nuanced for a policy,” Benedetti laments.
Pediatric oncologists do not want to take hope away from parents and children. Yet they are ethically obligated regarding truth-telling and preventing harm without potential for benefit.
“Navigating these scenarios takes time, good communication skills, and involvement of palliative care,” Benedetti says. Other common issues include:
• Enrolling children in clinical research, particularly early phase clinical trials, and issues involving therapeutic misconception for patients enrolling in randomized, controlled trials;
• Problems surrounding somatic and germline genetic testing, including incidental findings and whether to test for adult-onset conditions not known to be associated with pediatric cancer;
• Chemotherapy shortages.
National shortages of commonly used chemotherapeutics are causing some institutions to ration. Thus, some children are receiving altered chemotherapy regimens. “This is likely to lead to some children relapsing or dying because they cannot get the most efficacious and proven treatment for their disease,” Benedetti says. “This is a major issue right now.”
Some of these scenarios, such as requests to withhold information from patients or to enroll children in clinical trials, are so common that all PHO subspecialists should be comfortable navigating them. “But for a particularly challenging case, an ethics consultation may be helpful,” Benedetti offers.
Examples would be a case in which a parent adamantly refuses to allow the medical team to discuss information with the child. The same is true for a case involving refusal of recommended cancer treatment, prompting the team to consider seeking a court order to treat over parental objection. “Ethics education would not replace the option or need to obtain an ethics consultation,” Benedetti says. “But it would hopefully lead to fewer cases where the PHO specialist feels they need that assistance.”
REFERENCE
1. Benedetti DJ, Marron JM, Thomas SM, et al. The role of ethicists in pediatric hematology/oncology: Current status and future needs. Pediatr Blood Cancer 2023;70:e30132.
Ethics education would not replace the option or need to obtain a formal ethics consultation. However, such education could lead to fewer cases during which specialists believe they need such assistance.
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