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A Difficult Decision

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An infant is born to Ms. L, who is 19. After delivery, the infant, Baby J, does not breathe and has a low heart rate. The neonatology team resuscitates her. A brain study shows severe brain damage.

Her prognosis is poor: A lifelong need for a ventilator and feeding tube. She will not be able to communicate and probably will not recognize her mother.

The neonatal team and Ms. L discuss withdrawing life support. They ask Ms. L what she wants to do, but she can’t decide. The neonatology team wonders how to ethically proceed.

According to the American Academy of Pediatrics, parents and neonatologists may opt to forgo life-sustaining treatment when the burdens of treatment outweigh the benefits if the infant has a high risk of permanent and severe neurodevelopmental disability and a poor quality of life.

As a vulnerable new mother, Ms. L has difficulty deciding what she wants for Baby J.

Michael Arenson and April Dworetz

Case presented by Michael Arenson, who has a master’s in bioethics from Emory and is a medical student, and April Dworetz, associate professor of pediatrics in the division of neonatology and a senior faculty fellow at the Emory Center for Ethics. This medical ethics series is based on real Emory cases, with some details changed to protect patient identities.

The neonatal team members have a clear preference toward withdrawing life-sustaining measures. They think Baby J will have an unacceptable quality of life.

The team asks Ms. L to decide whether to continue or withdraw life support. Her inability to decide creates a de facto choice to continue life support.

In the U.S, the patient’s best interests guide ethical decision-making.

The parents (or in Baby J’s case, the mother) represent their infant’s best interests. The neonatologist cannot ethically base her decision on her own values.

In this case, the physician’s moral obligation lies with the mother’s choice of best interests.

Ms. L asks for help from the team. She does not know how to decide.

Another neonatologist takes a different approach.

She asks Ms. L about her values regarding life, death, and disability. “Some parents believe in the sanctity of life, others in the quality of life. Have you thought about your values?” asks the neonatologist.

Ms. L takes time to contemplate the question. A week later, she asserts that she believes Baby J will have a poor quality of life.

Ms. L asks the neonatologist what she should do.

The neonatologist says, “From what you have told me, you do not want Baby J to live the life she will have. We can make her comfortable, disconnect the ventilator, and allow her to die peacefully.”

Collaborative decision-making enables an ethical process.

In this case, the medical staff and family communicated throughout the patient’s course of treatment.

The parent(s) reveal values, beliefs, and cultural preferences, and shared decision-making takes place.

In the end, after the infant was given a dose of morphine for comfort, Ms. L held Baby J while the physician disconnected the ventilator. Baby J died in her mother’s arms.

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