I see this as a widespread problem in the area of caring for DD/MR consumers. Many don't have advanced directives. When family is involved they either want everything done or refuse to make any decision which leaves the patient in limbo. Further the system that protects DD/MR clients won't give consents for DNR because of the perception that DD/MR clients aren't worth saving due to their disability - You don't know how many doctors simply refuse to work on DD/MR patients simply based on their diagnosis.
Last year I had a 30 year old with a fractured arm that a doctor would not surgically repair stating "People with MR don't have good surgical outcomes" I finally got a teaching hospital to do it three weeks post fracture and she had insurance and everything. BTW she had a great outcome and full recovery.
It's so frustrating - I could just scream sometimes
Hppy