T wenty-year-old Mitchell (name changed) appeared in front of his mother one morning and mouthed to her, "I can't breathe". He had to repeat himself because she did not initially understand.When she realized what was happening, she called 911 and then began cardiopulmonary resuscitation. He was taken to the nearest intensive care unit where he underwent a tracheostomy and was put on a ventilator. Mitchell and his mother were involved in their first discussion about ventilation that morning. They were told that it would be permanent. We do not know the specifics of their discussion, but Mitchell's mother reported that his response was a request to 'pull the plug', and that is how his life ended.One of the authors had known Mitchell since he was four years of age; had watched this hyperactive little boy run and stumble, then struggle to his feet; had watched his mother carry him up three flights of stairs to their tiny apartment; and had watched him 'graduate' from a manual wheelchair to a powerchair with tilt.Through it all, he had been amazingly healthy, so his quick death was, and remains, a shock. The process was not questioned at that time, but we did gradually came to question it and began a search for answers. The literature shows that breathing support options can enable some individuals to regain a measure of control in their lives, which have been extended meaningfully -for them and for those who love them.The progression of Duchenne muscular dystrophy (DMD) is predictable. The timeframe varies, but it progresses for others just as it did for Mitchell. Although mobility changes are very apparent to the children and their families, the weakening of the inspiratory muscles and the abdominals, which provide the power for a productive cough, is not as apparent. This weakening happens more insidiously because as boys become less active, they do not stress their cardiovascular and respiratory systems as they once did. Those who manage the health of these boys must be aware of the potential issues in facilitating access BaCkgROunD: Ventilators for home use, manual and mechanically assisted coughing techniques, and the services of in-home respiratory therapists are options for youth with Duchenne muscular dystrophy (DMD). Evidence supports the use of these modalities, but there seems to be few youth who are receiving these therapies. Is there a knowledge transfer issue? Is there a lack of resources? What is the best way to discuss the issues? What do youth and parents want? OBJECTIVE: To determine practices, attitudes and beliefs regarding the timing and content of client/family communication related to ventilatory support decisions for individuals with DMD. METHODs: A questionnaire was sent to all 19 children's treatment centres in Ontario. The lead clinician responded on behalf of his or her centre. Another questionnaire was given to 11 families who attended a parent support meeting. REsulTs: Respondents from the treatment centres who provide services for youth with DMD indicated that there are resources in te...