Pregnancy loss: consistent bereavement care pathways needed
This research looked at the extent to which the Human Tissue Authority (HTA) Guidance (2015) has been incorporated into hospital policies for the management and disposal of pregnancy remains within NHS England.
About the research
It is estimated that 1 in 5 known pregnancies end in miscarriage and there are approximately 2000 terminations for reasons of fetal anomaly performed in the UK each year. The care and support provided to those women and their families can help to mediate how they experience the loss, and disposal of pregnancy remains is a significant part of that process.
This research looked at the extent to which the Human Tissue Authority (HTA) Guidance (2015) has been incorporated into hospital policies for the management and disposal of pregnancy remains within NHS England. It also examined the extent to which those providing bereavement care to women – particularly, professionals in healthcare services and the funerary industry in England – incorporated the HTA Guidance within their practice.
Three methods were used:
(1) examination of the HTA and other guidance to discern standards for disposal of pregnancy remains;
(2) analysis of trust documentation related to the care of women who had experienced miscarriage or termination for reasons of fetal anomaly;
(3) qualitative interviewing of hospital bereavement care providers and funerary industry professionals.
This report will be of interest to those involved in the disposal of the remains of pregnancy and in the support of those who experience pregnancy loss.
- A standardised bereavement care pathway* following pregnancy loss, including an approach to options for disposal of pregnancy remains, could help ensure that women are provided with a full range of choices.
- The discrepancies in levels of information on disposal methods across trusts could be eliminated by producing specific patient information leaflets on disposal.
- Those developing clinical guidance in this area should consider whether disposal of pregnancy remains could be integrated into the pregnancy loss care pathway and as such discussed as part of the consent process, with standardised consent forms used across trusts.
- Clarification is needed from the HTA on what sensitive incineration means and why offering this method for disposal of pregnancy remains is legitimate.
- Trusts and crematoria should review their policies on parental attendance at funeral/memorial services to ensure that attendance is facilitated as far as possible.
The report found that NHS trusts and funerary industry professionals across England provide high quality care to people who have lost pregnancies. However, local bereavement care pathways vary considerably from each other.
In general, women are being offered some choice for disposal of pregnancy remains although it is rare for trusts to either offer or inform of all possible options. Sensitive incineration is rarely offered and there is considerable bias against incineration as a legitimate disposal option.
It is not clear whether disposal of pregnancy remains is discussed as part of the consent to treatment process. Furthermore, trust policy on disposal of pregnancy remains is often unclear or internally inconsistent.
In general, there is inconsistency regarding the range of information and support offered to women. For instance, patient information leaflets (PILs) often do not contain information about management and disposal of remains which means that the level of care and information a woman receives is dependent on those caring for her.
Additionally, parental attendance at funeral/memorial services is not always facilitated despite there being no legal obstacles.
* The development of a National Bereavement Care Pathway will be an important contribution to achieving this.
McGuinness S and Kuberska K (2017) Report to the Human Tissue Authority on disposal of pregnancy remains (less than 24 weeks’ gestational stage).
We would like to acknowledge the Economic and Social Research Council for funding this research (Project Reference: ES/N008359/1). We would like to thank our project partners (The Human Tissue Authority; Antenatal Results and Choices; Miscarriage Association; Sands) and project participants.
Policy Briefing 47: October 2017
Contact the researchers
Dr Sheelagh McGuiness, (Lead author, co-investigator, Death Before Birth project)
Dr Daniella Fuller, (Principal investigator, Death before Birth project)
Dr Sheelagh McGuinness and Louise Austin, University of Bristol
Dr Karolina Kuberska, Dr Danielle Fuller, Prof Jeannette Littlemore and Dr Sarah Turner,
University of Birmingham