Copying medical summaries on deceased infants to bereaved parents

Aim: When an infant dies following neonatal intensive care, a detailed medical summary about the infant's life and death is sent to the general practitioner (GP). Our practice is to send an exact copy of this summary to the parents also. We evaluated the opinions of bereaved parents and their GPs on this practice. Methods: We carried out a postal questionnaire survey of bereaved parents who had been sent a copy of our medical summary on their deceased infant and their GPs. Parents were asked to rate the summary for its helpfulness, their understanding of it and how distressing it was to receive. We concurrently surveyed via e-mail all paediatricians in our region to ask whether they routinely copied letters to bereaved parents. Results: Only 3 of 32 (9%) paediatricians routinely copied summaries to bereaved parents. Thirteen of 21 (62%) parents responded: all but one found the copied summary very helpful, most did not find it especially distressing and most reported a fair understanding of it despite its detailed medical content. Almost all their GPs supported copying the summaries to parents. Conclusion: Most bereaved parents welcome an exact copy of the detailed medical summary that provides a complete record of their baby's clinical course, brief life and terminal events.