A post mortem examination is the single most useful investigation in providing information for parents about why their baby died (Downe et al 2012). However, perinatal post mortem rates in the UK are low and recent research* has shown that the consent process has actually become a barrier to post mortem consent. Our hope is that our new consent package will help remove this barrier, make it easier for health professionals and parents to discuss a post mortem and ensure that parents can make an informed choice as to whether to have a post mortem examination of their baby.
Alix Henley, Sands Advisor and co-author of the Post mortem consent package: “The main aim of any post mortem is to help parents understand why their baby died and to try to ensure the best care in a subsequent pregnancy. By using this package health professionals can ensure that parents are in a position to make a fully informed decision as to whether to have a post mortem examination of their baby.”
We also hope that it will lead to more information on which to base measures and policies that might reduce the numbers of late miscarriages, stillbirths and neonatal deaths in the future.
“When you have a baby who dies it seems that there’s nothing positive, and you just have to try to find something that might be positive. For us, it was that we got an answer about why, but also, knowing that somebody else may gain from that.” Bereaved Mum.
We developed the package over a 2 year period in close consultation with health professionals, bereaved parents from across the UK and with support and approval of the Human Tissue Authority (HTA).
Baroness Diana Warwick, Chair of the HTA: “We are extremely pleased to have supported the important work of Sands by contributing to the development of their Post mortem consent package. When a baby dies, it is an enormously distressing time for the family. The package will help ensure that healthcare professionals who seek consent from parents can answer their questions and are sensitive to their needs. We encourage all hospitals involved in perinatal post mortem examinations to consider adopting the Sands consent package.”
The package includes; a new Post mortem consent form, a guide for consent takers, and a support booklet for parents: Deciding about a post mortem: Information for parents.
The Post mortem consent form has been approved by the Human Tissue Authority (HTA). It can only be used in England at present. Separate consideration is being given in Scotland to a similar form that complies with the Human Tissue (Scotland) Act 2006.
If you are a health professional, and would like further information on the package, and information on where to access copies of all the documents for health professionals, please click here.
*Stock, SJ, Goldsmith, L, Evans, MJ & Laing, IA (2010) Interventions to improve rates of post mortem examination after stillbirth European journal of obstetrics, gynaecology, and reproductive biology, 153(2): 148-50