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Balancing Protection and Progress in Pediatric Palliative Care Research

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Madison is a 12-year-old with relapsed acute myelogenous leukemia. She and her parents have recently spoken with the palliative care team about their goals of care. Investigators, seeking to improve palliative care, would like to interview Madison and her parents separately about this discussion and their decision regarding Madison’s code status. What is the likelihood of Madison or her parents being distressed or traumatized by the interview? Should Madison’s attending oncologist have a say in whether she and her family are asked to participate in the study?

As pediatric palliative care seeks to build its evidence base, some are concerned about the potential risks for participants. In this Pediatrics Ethics Rounds article (10.1542/peds.2022-057502), being early released this week, authors consider under what conditions an Institutional Review Board (IRB) should approve a study such as the one described above. The commentators emphasize potential benefits to participants and ways to minimize risks.

Patients and their families may benefit from the opportunity to provide feedback on their decision-making. They may also benefit from sharing their stories, making meaning out of the situation, or contributing to their child’s legacy.

The commentators caution that the potential harms should not be unduly exaggerated; emotional responses should be differentiated from distress or harm. Harm can be reduced by incorporating family stakeholders in designing the study and utilizing trained and experienced interviewers who are able to provide psychosocial support. Commentators caution against overprotection such as unnecessary stand-by psychological support inflating costs and inappropriate gatekeepers reducing enrollment. 

If you were a member of the IRB, would you approve the study or if you were Madison’s oncologist or primary care provider, would you encourage her participation? Read this month’s Ethics Round and learn more to help shape your decision.

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