In Ireland, we congratulate ourselves on our caring approach to end of life, but this does not extend to pregnancy loss. It is the most common complication of pregnancy, but we do not have a culture that educates people about loss during pregnancy, or perinatal death. Loss and bereavement are not the stories of pregnancy. Instead, they are surrounded in silence and stigma.
The publication recently of the 112-page National Maternity Bereavement Experience Survey 2022 (NMBES) by the National Care Experience Programme was an attempt to start that important conversation.
A joint initiative by the Health Information and Quality Authority, the Health Service Executive (HSE) and the Department of Health, the survey provides information about the standard of maternity bereavement services in Ireland. It gave a space to 655 women and 232 partners who experienced a second trimester miscarriage, stillbirth or early neonatal death between 2019 and 2021.
Participants shared their experience of baby loss and suggested a better future of care for others who do not yet know this will happen to them. They were asked to rate their overall care, with 74 per cent rating it as “very good” or “good”, and 26 per cent rating it “fair to poor”. Asked to describe in their own words how care could be improved, they spoke of wanting dedicated spaces in hospitals for grieving parents; more consistent communication across services; additional supports at discharge for physical and mental health; and more support for partners.
But did anyone hear their voices?
The survey was the first of its kind and an extensive media campaign was planned for the day. The HSE’s response took months to prepare and ran to 116 pages. The HSE intends to use the findings to inform and underpin the National Women and Infants Health Programme (NWIHP)’s work across a range of projects and programmes, as well as to “inform the development of quality improvement plans at national and local levels”. On the day, one leading parent advocate was interviewed, but the NMBES did not feature in any news bulletins across the main Irish radio stations. No representative from HSE management and no clinician expert was interviewed to discuss the years of work led by the NWIHP in this area, or to respond on how or when the gaps and shortcomings identified by women and their partners are to be addressed in practice. Other stories I heard covered in the news that day involved addiction, sexual violence, racism, infertility, immigration, homelessness and military neutrality; yet the interview on baby loss was the only one I heard preceded by a warning that it would be a “challenging topic” and a “challenging listen”. Print coverage was limited.
It is not surprising that women and men are unprepared for its physical and emotional reality
It struck me that this is all reflective of a culture that has eclipsed the reality of pregnancy loss for too long.
I have said in public many times that the work of putting the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death into practice across Irish maternity hospitals, which began in 2017 and is still ongoing, demonstrates NWIHP’s commitment to high-quality care for bereaved parents, while raising awareness of pregnancy loss and recognising its wide impact.
However, there are real challenges that exist for clinicians like me to provide a consistently high-quality bereavement service and to implement improvements in care nationally – including the obvious: maternity hospital infrastructure, staff recruitment/retention, and competing clinical services demanding greater attention.
Perhaps the biggest issue, though, is awareness at the highest levels of our health services and in our society about pregnancy loss and how important bereavement care really is. Because we do not talk about pregnancy loss.
It is not surprising that women and men are unprepared for its physical and emotional reality. We continue to hear from bereaved parents that “we never knew this could happen”, until it did. The impact of this loss can remain with parents for the rest of their lives.
Pregnancy loss is an emotive topic. It makes people uncomfortable and is often accompanied in public and media discourse by a sense of inevitability and fatalism. It features in our national commentary infrequently, often when driven by a scandalous story or singular heartbreaking tragedy. It is also seen mostly as a female problem – this is closely related to cultural issues around how aspects of women’s health are addressed and prioritised. Or not addressed and prioritised. For me, this reflects how we as a society – and within our services – deal with women’s health issues in pregnancy and how we care for people who are bereaved.
There has been much talk in the current Government about a “revolution” in women’s healthcare, with a stated objective to improve health outcomes for women in Ireland. Sadly, this has not (yet) extended to directing the HSE to provide new or improved services for pregnancy loss and perinatal death. Neither has there been any transformation in healthcare policy in this area. Pregnancy loss research, despite my group’s best efforts, remains peripheral in Ireland at best, under-resourced and sometimes unrecognised.
Progress in reduction of perinatal mortality has slowed over the last decade in Ireland, and we lag behind other high-income countries in prevention strategies and public health education. We do not record miscarriages nor provide universal access to specialised (eg miscarriage, recurrent miscarriage, pregnancy after loss) clinics. We have no model of care for miscarriage services, and no obvious plan to deal with clear health inequalities and the harms that result during pregnancy, including pregnancy loss. As a society, I believe we fail to acknowledge the impact of pregnancy loss on women and men in their daily lives. Pregnancy loss also comes with significant wider economic, workforce, family and societal impacts that are inadequately acknowledged.
The NMBES report said confidently to almost 900 survey participants: “The survey ensures that your voice will be heard by those with responsibility to change and improve maternity bereavement care in Ireland.” We all let them down if we do not continue the conversation. We desperately need to end the silence, stigma, inaction and inequality around pregnancy loss in Ireland.
Prof Keelin O’Donoghue is clinical lead for the National Standards for Bereavement Care following Pregnancy Loss and Perinatal Death, National Women and Infants Health Programme, HSE and a consultant obstetrician at Cork University Maternity Hospital. She leads the Pregnancy Loss Research Group at University College Cork.