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Ethics Consult: Who Decides if Child Is 'Dead?'

— You make the call

Last Updated May 20, 2022
MedpageToday
A computer rendering of fading brain waves over a brain.

Welcome to Ethics Consult -- an opportunity to discuss, debate (respectfully), and learn together. We select an ethical dilemma from a true, but anonymized, patient care case. You vote on your decision in the case and, next week, we'll reveal how you all made the call. Bioethicist Jacob M. Appel, MD, JD, will also weigh in with an ethical framework to help you learn and prepare.

The following case is adapted from Appel's 2019 book, .

Enoch is a 5-year-old Mennonite boy with a terminal brain tumor. He is a patient at a small hospital in his rural community. As his condition deteriorates, he is placed on a ventilator, and he soon loses consciousness. Eventually, his doctors conduct a series of electroencephalograms and conclude that his brain function has completely ceased. Under state law, Enoch is now dead.

Enoch's parents, Jared and Susanna, do not believe in brain death. According to their traditions, a person is not dead as long as the heart is still beating. "Under your rules, he may be dead," said Jared. "To my family, he is very much alive." They insist that the doctors care for their child indefinitely. When the hospital refuses, they raise money in their community to purchase a ventilator so that they can care for Enoch in their own living room.

See the results and what an ethics expert has to say.

Jacob M. Appel, MD, JD, is director of ethics education in psychiatry and a member of the institutional review board at the Icahn School of Medicine at Mount Sinai in New York City. He holds an MD from Columbia University, a JD from Harvard Law School, and a bioethics MA from Albany Medical College.

Check out some of our past Ethics Consult cases:

Allow Co-Ed Hospital Room?

Let Patient Pray Pneumonia Away?

Perform Involuntary C-Section on Model?