title: What do parents want to know when considering autopsy for their child with cancer?
abstract: Research has suggested that autopsy in pediatrics is a valued way for parents to better understand and process their child's death, yet physicians often express hesitancy in discussing this topic with parents. To better assist clinicians with initiating discussion about this often sensitive topic, the current study examined bereaved parents' preferences about the timing and content of the autopsy discussion as well as reasons for considering autopsy. This study explored the views of 30 parents who lost a child to a variety of malignancies between 6 months and 6 years ago. Results showed that 36.7% of parents recalled having a discussion about autopsy, and the vast majority of those who did not recall a discussion (89.5%) would have considered an autopsy if it had been discussed. The majority of participants in this study indicated their preference to have the first conversation about autopsy when it becomes clear that cure is no longer possible. Findings suggest that educating parents about the clinical, emotional, and potential research benefits of autopsy and tissue procurement will ultimately help them make informed decisions and understand the importance of autopsy in medical progress. The future research and clinical implications of these findings are discussed.
authors.affiliation: *Pediatric Oncology Branch, National Cancer Institute, Center for Cancer Research, National Institutes of Health, Bethesda, MD †Memorial Sloan-Kettering Cancer Center, New York, NY.
authors.forename: Lori
authors.initials: L
authors.lastname: Wiener
authors.forename: Corinne
authors.initials: C
authors.lastname: Sweeney
authors.forename: Kristin
authors.initials: K
authors.lastname: Baird
authors.forename: Melinda S
authors.initials: MS
authors.lastname: Merchant
authors.forename: Katherine E
authors.initials: KE
authors.lastname: Warren
authors.forename: Geoffrey W
authors.initials: GW
authors.lastname: Corner
authors.forename: Kailey E
authors.initials: KE
authors.lastname: Roberts
authors.forename: Wendy G
authors.initials: WG
authors.lastname: Lichtenthal
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D001344:Autopsy; D001601:Bereavement; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000523:psychology*; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology*; D010290:Parents / Q000523:psychology*; D011795:Surveys and Questionnaires; D055815:Young Adult