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Abstract Pediatric palliative care providers often care for children with rare, poorly understood diseases. In addition to grappling with a life-limiting diagnosis, families face complexity in decision making stemming from… Click to show full abstract
Abstract Pediatric palliative care providers often care for children with rare, poorly understood diseases. In addition to grappling with a life-limiting diagnosis, families face complexity in decision making stemming from the prognostic uncertainty surrounding their child's rare condition. We discuss several unique challenges, illustrated through case studies of three children who shared the rare diagnosis of congenital disorder of glycosylation.
Keywords:
three children;
congenital disorder;
disorder glycosylation;
case;
palliative care
Journal Title: Journal of Palliative Medicine
Year Published: 2017
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Journal Title: Journal of Palliative Medicine
Year Published: 2017
Link to full text (if available)
Share on Social Media: Sign Up to like & get
recommendations!