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Ethical Issues That Circle Around a Baby Born with Anencephaly

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A baby is born with anencephaly, or absence of the entire brain above the brainstem. The brainstem is intact, which means that the baby can breathe and have a heartbeat and blood pressure, but there is no chance for any human brain function or cognition, due to this birth defect. The health care team begins to educate the mother, since children with this deficit generally die shortly after birth. However, the mother is devoutly religious, and her minister has told her that if she prays hard enough to God, that God will work a miracle and her baby's brain will heal itself. She is insistent that all possible care be given to her baby, including a months-long stay in the ICU, constant care by a caregiver, regular brain scans, and other expensive modalities. The hospital, finding her adamant, asks the court for guardianship of the baby, with the medical plan to provide only maintenance care with no life-prolonging techniques until the baby dies.

1. What are the ethical issues are involved?
2. How do the principles of autonomy, beneficence, nonmalfeasance, and justice manifest themselves?
3. If you were called as an ethical consultant, what would you do/recommend?

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Solution Summary

The issue of what happens to a baby born with anencephaly is discussed.

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In the case of a clash between the opinion of a mother with a newborn and that of hospital staff, one first would likely need to look at the hospital mission. Considering if the hospital is a community hospital, nonprofit, private or one with religious backdrop (i.e. St. Joseph Hospital). The next issue to consider is who is paying for what follows? The matter of who should receive the final focus here, mother or baby, is important to consider, too. Can the mother endure all that is forthcoming or is the matter only about the social, emotional, physical and spiritual health of the baby?

Finally, those on both sides of the scenario should be armed with cases to support their position and would be important for a discussion. The Jahi McMath case, which involved a teenage girl who was declared dead in California following surgery in 2013 at age 13, ...

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