The 9th-15th October is Baby Loss Awareness Week, which provides a chance to raise awareness about the issues surrounding pregnancy and baby loss in the UK. Our team has over 10 years of research experience in what makes effective training for staff involved in care for bereaved parents, and seven years working to end preventable harm related to stillbirth.
Author: Dr Dimitrios Siassakos, Consultant Senior Lecturer in Obstetrics, Department of Obstetrics and Gynaecology, The Chilterns, Southmead Hospital and Bristol Medical School
We welcome the House of Commons debate on Tuesday 10th October 2017 as part of Baby Loss Awareness Week, and have drawn on our recent research at the University of Bristol to contribute to this debate.
Our research has found that bereavement care is inconsistent across UK hospitals, and variable in quality. Bereaved parents are not always involved in decision-making, and parents may not be aware of the process when hospitals review their baby’s death. Healthcare staff may not be supported in caring for parents.
Our research on what makes training effective highlights that not all training is equal.
How we would like our MPs to help:
Our research has informed the new national bereavement care pathway, but comprehensive training for all staff working with bereaved parents should also be commissioned to further improve bereavement care. Our recent review found the following best practice points:
- Healthcare professionals should be trained in confirming the diagnosis of stillbirth, available 24 hours a day and seven days a week.
- Sensitive and empathetic communication should be adopted by healthcare professionals in contact with parents who experience stillbirth.
- An individualised patient-centred approach should be adopted.
- Continuity of care should be adopted by maternity units with dedicated obstetricians and midwives experienced in bereavement care.
- A flexible approach should be taken regarding discussion around mode of delivery and healthcare professionals should explore why parents might choose a caesarean birth.
- Pain relief should be available and discussed with all parents.
- Lactation suppression should be offered to all women (in the absence of contraindications).
- Memory-making, including seeing and holding the baby, should be offered to parents.
- Post mortem should be offered to all parents by a healthcare professional trained in post mortem consent.
- Parents’ perspectives of their care should be included in standardised multidisciplinary reviews of their stillbirth.
- A consultant follow-up appointment should be offered, encompassing clinical and emotional aspects of care.
- Counselling and support groups should be offered to those who need psychological input.
- Care in subsequent pregnancies should be individualised and informed by the cause of prior stillbirth.
University of Bristol-led research for the Lancet Stillbirth Series 2016 showed that the impact of stillbirth on families, the healthcare sector, and society, is far-ranging; urgent action is needed.
The INSIGHT multicentre study in South West England interviewed 35 parents, and 22 obstetricians and midwives. It revealed that parents are not involved in key decisions about their care; and staff are not trained to support parents in their difficult journey, resulting in both parents and staff being “scarred for life”.
- Some women reported they did not ‘feel right’ before going to hospital. Once they arrived, there was no standard approach to care. Sometimes there were long delays before the death of the baby was confirmed and action was taken. “We weren’t really in a situation where there seemed to be any decisions to be made. It was kind of very much done for us”.
- After it had been confirmed that the baby had died, staff focussed on the mothers’ needs, but the parents’ priorities were still with their baby. There were several reasons why parents asked for a caesarean birth that staff had not considered. “Something really awful happened, but we’re just gonna torture you for eight hours now.”
- Staff influenced parents’ decisions about post-mortem examinations. Parents found it helpful when staff explained the respectful nature and purpose of the examination.
- After discharge from hospital, there was no consistent plan for how follow-up care would be given. Parents would have liked more information about their next hospital appointment.
The PARENTS-I pilot project interviewed 11 parents with different experiences of bereavement and showed that parents were unaware hospitals were reviewing their baby’s death; and expressed a wish to contribute to these reviews with questions, comments, and praise as appropriate.
With the PARENTS II study we have been developing and piloting a new process to involve bereaved parents in the investigation of their baby’s death.
We are working with the National Perinatal Epidemiology Unit (NPEU) to support the review process across the UK with a standardised comprehensive tool (PMRT). Interim findings show that parental involvement will only be feasible and useful if the review process is standardised first, and standardisation alone will be meaningless without parental contribution and feedback.
We have also been working closely with Dr Sheelagh McGuiness on related research.
Policy briefing – Pregnancy loss: consistent bereavement care pathways needed