Report to the Human Tissue Authority on disposal of pregnancy remains (less than 24 weeks’ gestational stage)

 

Please click here to download the full report in PDF format: Death Before Birth HTA Report 2017

To cite: McGuinness, S., & Kuberska, K. (2017) Report to the Human Tissue Authority on disposal of pregnancy remains (less than 24 weeks’ gestational stage). Available at https://deathbeforebirthproject.org/research/htareport2017/.

Executive Summary

This report provides an overview of preliminary findings from a research investigation into the extent to which the Human Tissue Authority Guidance (2015) has been incorporated into hospital policies for the management and disposal of the remains of pregnancy. The research also examined the extent to which those providing care to women – particularly, midwives working in hospitals and members of the funerary industry – were aware of the HTA Guidance, and considered whether or not they were incorporating it within their practice. The purpose of this report is to communicate the results of this research to the Human Tissue Authority with the aim of informing their future revisions to the HTA Guidance. However, the report will be of interest to other stakeholders involved in the disposal of the remains of pregnancy and in the support of those who experience pregnancy loss.

The research was conducted among trusts from across the four regions of NHS England. Three methods were employed: (1) examination of the HTA Guidance and guidance from other organisations to discern standards for disposal of pregnancy remains; (2) collection and analysis of a sample of trust documentation related to the care of women who had experienced miscarriage or termination for reasons of fetal anomaly (TOPFA); (3) qualitative interviewing of a small sample of bereavement care providers in hospitals within NHS England and professionals in the funerary industry in order to assess their perceptions of the HTA Guidance. 

Key findings*

  • Generally, women are being offered some choice for disposal of pregnancy remains.
  • Trust policy on disposal of remains of pregnancy is often unclear or internally inconsistent.

Key recommendation to HTA:

  • There is confusion about what sensitive incineration means and whether it is a legitimate option for disposal of pregnancy remains. The Human Tissue Authority could provide a statement which clarifies the legitimacy of this disposal method.

Key general recommendations:

  • That there be a move towards a standardised approach to provision of information about options for disposal of pregnancy remains. This could be achieved with specific patient information leaflets on disposal and standardised consent forms like those provided by Sands for post mortem. Such an approach could help ensure that women are being provided with a range of options for disposal of pregnancy remains.
  • That consideration be given as to whether disposal of remains of pregnancy be integrated into miscarriage care pathway, potentially within the meaning of treatment and as such discussed as part of the consent process.

* The limited scale and parameters of the research mean that these findings should be treated as suggestive of more wide-spread policies and practice, but not as concrete evidence pertaining to all NHS England trusts or all bereavement care providers and funerary professionals.