Table 4. Responses to Open-ended Item on Information Physicians Should Consider in Discussing Autopsy with Parents.

Parents' thoughts on discussing the procedure “Be forthcoming. Speak in layman's terms.” “Where will the autopsy be done?” “Don't discuss ‘incisions.’ Too much of a visual comes to mind and no one wants to visualize their child being ‘dissected.’” “Do I have to be there to see it done?”

Parents' thoughts on discussing what can be learned from the autopsy “Can you tell me what was really going on in his/her body?” “Can they tell me exactly how my child died? (We suspect a brain hemorrhage but we don't know the immediate cause of death.)” “It would be helpful to get an understanding of what my child was going through and to know that he was in no pain.” “I think most parents want to help find a cure. Those who don't want an autopsy, I think have just had enough and can't do anymore and that's okay too.” “I would like the doctors to have asked if I had considered whether I would want to have my son's tissues preserved to help other down the road with the same diagnosis.”

Parents thoughts on discussing what happens after the autopsy is completed “Can I see photos of the tumor?” “Will other institutions have access to [my child's] samples and/or data collected?” “Can I designate who receives the samples?” “If I change my mind and decide later that I want to learn about the autopsy results, can I?”