Psychosocial aspects of death and dying in Duchenne muscular dystrophy

An exploratory survey of need and availability of life expectancy information and counseling was conducted among 32 patients who have Duchenne muscular dystrophy, 75 parents, and 43 professional health care workers in the muscular dystrophy clinics of the greater Los Angeles area. Regardless of their ages, which ranged from 12 years to 21, the majority of the patients, as well as the majority of the parents, rated life expectancy information and counseling as an important, but relatively unmet, need. Professionals perceived these services as more available than did the patients and their parents. Implications for intervention include restructuring psychosocial services for the entire family and providing a network of liaison services to assist the family as the disease progresses.