Baby Receives Tracheotomy After End-of-Life Dispute


"We're glad we made that decision so he was comfortable," she said. "The family got to see him on his last days, and he decided to take his last breath in front of all of us. It was the most peaceful thing we'd ever seen."

Proceeding With Ethics

Dr. Sarah Friebert, a pediatrician who specializes in pediatric palliative care in Akron Children's Hospital in Ohio, supported both Jones and McMahan with their babies' end-of-life decisions. Friebert was not up-to-date on the details of Baby Joseph's case, but she said she has seen this sort of conflict before.

"Doctors must do diligence to make sure they are exhausting as many possible avenues to get to that middle point," Friebert said. "They know that the parents are going to have to live with those consequences for a long time. "

Friebert went on to say that doctors almost always try to adhere to parents' requests, unless there is clear evidence that they are not making a decision in the best interest of the child.

"The process involves bringing in other people to support the family with any sort of emotional, religious or spiritual issues that we need to understand better," Friebert said. "It often feels like an impossible choice because death is such a final option and parents are understandably going to try everything to avoid that."

Dr. Ian R. Holzman, vice chair of clinical affairs and chief of the division of newborn medicine at Mount Sinai School of Medicine in New York, said the story of Baby Joseph highlights the complexity of decision making around newborns that seem to have an unclear future.

In cases where severely ill newborns are not likely to ever regain consciousness, Holzman said "parental requests for aggressive treatment, surgery [or] dialysis are most often rejected as inappropriate for the patient and we would contest those requests through the appropriate channels."

"On the other hand, the idea of a tracheotomy and feeding tube are considered benign enough that most of us would go along with the parents' wishes if it meant the child might be able to go home and be with his or her family," continued Holzman.

But the process gets even more complex with infants and young children who cannot form values and preferences about their desires regarding end-of-life treatment, said Dr. Art Caplan, Emanuel and Robert Hart director of the Center of Bioethics at the University of Pennsylvania.

Felicia Cohn, Ph.D., director of medical ethics at the University of California at Irvine, said that she has been involved in similar conflicts, and an ethical process must be under way to assist both parties.

If conflict arises, a clinical ethicist or an ethics committee may assist in the decision making process. The court is a last resort and is a sign of persistent conflict.

"These cases will continue to arise as long as we value a diversity of belief systems and opinions," Cohn said. "We struggle with balancing the different values involved. Among the goals of medicine are benefiting the patient, avoiding harms to patients, respecting the autonomy of the patient and decision maker and distributing health care resources justly."

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