The standard of care for mothers experiencing the end of a pregnancy varies widely, with more to be done to replicate good practice found in some NHS Trusts and hospitals, according to a new study led by researchers at the University of Birmingham and the University of Bristol.
The findings are the result of the first stage of ‘Death Before Birth’, a two-year study looking at the experience of women who have gone through the potentially traumatic experience of pregnancy loss either through miscarriage or termination for fetal anomaly, or experience of stillbirth.
Dr Danielle Fuller, University of Birmingham, said:
‘We hope that the report will assist the Human Tissue Authority as they move towards a review of their Guidance, and that it will contribute to the improvement of care pathways for, and advice offered to the bereaved.’
The study found that although there was a range of good and improving, practice, there were problematic variations in practice across England, with some policies, consent forms and patient information leaflets of some trusts and hospitals hard to interpret and changing on an ad-hoc basis.
‘In general, we found 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.
‘There was confusion and ambiguity about the meaning of 'sensitive' incineration and whether it was an appropriate method of disposal.’
Other key findings of the study include:
- A need for clarity on whether disposal of pregnancy remains is discussed as part of the consent to treatment process;
- 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 meaning the level of care and information a woman receives is dependent on those caring for her;
- Parental attendance at funeral/memorial services is not always facilitated despite there being no legal obstacles.
The researchers looked at the extent to which the Human Tissue Authority (HTA) Guidance (2015) had been incorporated into hospital policies for the management and disposal of pregnancy remains within NHS England.
They also examined the extent to which those who were providing bereavement care to women – particularly, professionals in healthcare service and the funerary industry in England– incorporated the HTA Guidance within their practice.
The team also investigated the extent to which professionals take account of the views, experiences and needs of the bereaved.
The team also made a number of recommendations to the Human tissue Authority (HTA):
- Clarification was needed on what sensitive incineration means and the legitimacy of offering this method for disposal;
- A more standardised approach to provision of care needed in this area;
- Consideration should be given about whether the disposal of remains of pregnancy be brought within the meaning of ‘treatment’ of miscarriage and as such discussed as part of the consent process.
Drawing on the fields of law and sociology, Dr Sheelagh McGuinness and Louise Austin from the University of Bristol worked with Dr Karolina Kuberska from the University of Birmingham to undertake the research that produced the report.
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- It is estimated that one in five known pregnancies end in miscarriage and there are approximately 2000 terminations for reasons of foetal 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.
- The research was funded by the Economic and Social Research Council (Project Reference: ES/N008359/1).
- Project partners include: The Human Tissue Authority; Antenatal Results and Choices; Miscarriage Association; Sands.
- The disposal of remains of pregnancy has been the subject of increased levels of media controversy and public scrutiny over the last few years. Scandals regarding the return of ashes from crematoria (e.g . Mortonhall Report, 2014), the incineration of remains of pregnancy in hospitals (Dispatches, 24/03/14), and a call for a change in the legislative definition of miscarriage (HC Deb 14 January 2014 cc726-8) have, exposed to examination, areas that are generally subject to societal taboos.
- In the wake of these scandals, and in recognition of the need for national guidance in this area, the Human Tissue Authority (HTA) were tasked by the Chief Medical Officer to draft Guidance on the disposal of the remains of pregnancy (published on 25 March 2015).