About one in four pregnancies in the UK ends in miscarriage. Around one in every 200 births is a stillbirth or neonatal death. There are many other women who have to end a much wanted pregnancy because of a diagnosis of foetal problems or because their own health or life is endangered.
Pregnancy loss has a profound impact on parents, their families, and society. The care and support provided after pregnancy loss and bereavement is therefore of huge importance – and needs to be consistent. If it is not, families are harmed.
Our studies have shown that parents who experience this kind of loss can suffer from depression, anxiety, chronic pain and fatigue, employment difficulties, financial debt, and even increased substance use.
And even though healthcare staff are always keen to help and support parents, their own training has often not been up to the task. Asked about the care provided in these sensitive circumstances, one commented: “I make it up as I go along.”
A research project to identify the problems experienced by grieving parents found plenty of room for improvement. One major concern is that communication with parents is not always sensitive, and staff can lack the specific training required.
For example, after it had been confirmed that a baby had died, we found that staff tended to focus on the mother’s needs – including possible future pregnancies. But the parents’ clear priority was the baby they had just lost. Care will improve only if care providers take care to remember that that every pregnancy matters, not just the successful ones.
It also emerged that decisions were felt to have been made for parents instead of with parents, such as over whether or not to have a caesarean or vaginal still birth. The solution is joint planning to address their fears.
There was also inconsistent discussion about the post-mortem examination of the baby – again because of a lack of training for staff on how to approach such conversations.
Then there is the difficult subject of what happens to the baby that has been lost. “Death Before Birth” is a two-year project running from 2016, which recently published a reporton the options offered to women for what is termed “disposal of pregnancy remains” for losses that occur before 24 weeks gestation.
The Human Tissue Authority (HTA) recommends that women are offered options to have a cremation, a burial, or sensitive incineration. Their guidance emphasises how important it is to respond to each individual woman’s needs and to provide information on all of these options.
Our research, using documents from 50 NHS Trusts in England as well as interviews with hospital bereavement care staff and funeral service professionals, raised clear issues.
First, although women are offered some limited choice for what happens with the pregnancy they lost it is rare for them to be offered all possible options. Second, information about the range of options for disposal available, and how it was discussed, was not consistent. Guidance and information on this most sensitive issue must be better.
Informed improvements
The best improvements in care should be informed by suggestions from the parents who have direct experience of pregnancy loss. However our PARENTS I project showed that bereaved parents were often not aware that hospitals were actually holding investigations into the loss of their baby. If they had been, many said they would have been willing to contribute.
Overall, our research has shown that care is not as good as it could and should be. But improvements are possible, as long as we understand what is important to parents.
The launch of a pilot of the newly created National Bereavement Care Pathway in October 2017 is a significant moment in the improvement of care being offered to those who have experienced loss. A collaboration of several charities, patient support groups, royal colleges, and our team at the University of Bristol, it aims to standardise care.
The goal is that hospitals are consistent in what they offer, so that every parent in the UK can have the best possible treatment – regardless of where they live or who is responsible for their care.
Importantly, bereaved parents will be the main drivers of change and improvement. It is time to end patchy care; time to end preventable harm. With their help and involvement in the hospital review of their baby’s death, we can work towards a better standard of care, for everyone.