'Palliative care' means more than 'end-of-life' care for children and families coping with muscle disease
posted on July 1, 2009 - 11:06am
Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too.
Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.
Nobody likes to go to the doctor, but when a child has a neuromuscular disease, doctor visits usually are a regular part of life.
A good working relationship between parents and their child’s various doctors goes a long way toward making the experience positive for everyone involved and ensuring the child gets the best medical care. To that end, there are steps both doctors and parents can take...