It’s an important day for us here on the Death before Birth project, as it marks the publication of our report to the Human Tissue Authority (HTA) on the disposal of pregnancy remains of less than 24 weeks’ gestational age. The report was written by Sheelagh McGuinness and Karolina Kuberska from the project team, with research assistance from Louise Austin, and it marks the completion of the first stage of our project.
In 2015, the HTA published its Guidance on the disposal of pregnancy remains following pregnancy loss or termination. In the first stage of our project, we wanted to investigate the extent to which this guidance had been incorporated into hospital policies for the management and disposal of pregnancy remains. To do this, we collected a sample of hospital documentation from a number of trusts within NHS England, and analysed them to see how far they reflected the expectations set out in the Guidance. We also interviewed bereavement care providers in hospitals, and professionals in the funerary industry, to see how far they were aware of the Guidance and how much of an impact it had had on their practice.
We found that on the whole, women were being offered some choice about disposal, but that there was a lot of variation between different NHS Trusts. Women were not always offered all options, or were encouraged to choose a particular one. Information and support given to women following pregnancy loss was also inconsistent, with some hospitals providing more comprehensive information than others. The hospital policies on disposal were often unclear or internally inconsistent, and again, there was variation between different Trusts in this regard. We found that there was particular confusion surrounding ‘sensitive incineration’, what it involved, and whether it is a legitimate option for disposal.
In the light of this research, we made a key recommendation to the 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.
We also made two 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… 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.