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Navigating Medical Complexity Coping With Loss Neurojourney

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Theme: Goals of Care

The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

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The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

The doctor explained: not doing a feeding tube isn’t same as letting your child be hungry.

The parents of an infant with Gaucher Type 2 talk about how the palliative care doctor and nutritionist helped them understand how to think about a feeding tube for their daughter — not doing a tube didn’t mean she was going to suffer or be hungry. The parents find fun ways to concoct high calorie pureed food for her to eat orally, and ultimately never had to make the decision.

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