In the UK one in 200 babies are stillborn after 24 weeks gestation.
The proportion of parents consenting for post-mortem examination for their stillborn infant in the UK has decreased from 54.7% in 2000 to 42.4% in 2007. However, despite this, the proportion of parents being offered a post-mortem examination has increased.
This study looks at the experience and views of both parents and professionals regarding the consent process for perinatal post-mortem.
A survey of perinatal pathologists, obstetricians and midwives was undertaken alongside a survey of parents using the Sands, the stillbirth and neonatal death charity, website and online forum.
The questionnaire for healthcare professionals asked about their practice regarding consent for post-mortem examination, education and support for staff, perceived barriers to post-mortem examination consent and knowledge about post-mortem examination.
The parents’ questionnaire focused more on parents’ experience and satisfaction over the support offered after stillbirth.
Responses were analysed from 2,256 midwives, 354 obstetricians, 21 perinatal pathologists and 460 parents, making it one of the largest studies of professionals’ and parents’ experiences.
Ninety-five percent of parents had some investigations after experiencing a stillbirth. The most common reason for parents to have investigations, including post-mortem, was to find a cause for their baby’s death. A post-mortem examination can change the primary cause of death and confirm the clinical diagnosis in the majority of cases and change clinical management of subsequent pregnancies.
The majority of professionals and parents ranked emotional distress as a barrier to discussing a post-mortem. Parents viewed the time to get results as a barrier however professionals viewed this as less important. In addition, religious and cultural issues of parents were felt to be a significant barrier to consent by obstetricians and midwives, but less of an impact was perceived by pathologists and parents.
The majority of parents (69%) remained satisfied with their decision to have or to decline a post-mortem. However many parents who declined a post-mortem later regretted that decision compared to parents who accepted the offer (34.4% vs 17.4%).
The practitioners’ questionnaire also looked at knowledge of post-mortem and found that perinatal pathologists possessed greatest knowledge of post-mortem, but were unlikely to meet bereaved parents.
Furthermore, the study looked specifically at who discussed the post-mortem procedure with parents. The practitioners’ questionnaire found that obstetricians most frequently discussed post-mortem with parents followed by midwives. The majority of pathologists reported never seeing parents to discuss post-mortem. In contrast the parents reported that they had contact with more midwives than obstetricians.
Focusing on the training of professionals in this area, the study found that 26.1% of midwives and 12.4% of obstetricians had no training regarding counselling for post-mortem consent. A further 32.9% of midwives and 10.7% of obstetricians were dissatisfied with the training they had received.
The paper concludes by saying that training needs to be improved including more education for midwives and obstetricians on the nature and contribution of the post-mortem examination.
Dr Alexander Heazell, Clinical Lecturer in Obstetrics, Maternal and Fetal Health Research Centre, Manchester Academic Health Science Centre, and co-author of the study said:
“This study reports the largest number of parents’ and professionals’ views and experiences of counselling for post-mortem after stillbirth. Emotional, practical, and psychosocial issues can act as real or perceived barriers for staff and bereaved parents.
“Better education is required for midwives and obstetricians, to increase their knowledge to ensure accurate counselling of bereaved parents. The contribution of perinatal pathologists in this process and parental decision-making would be invaluable.”
John Thorp, BJOG Deputy-Editor-in-Chief added:
“This study provides valuable insight into the opinions of both parents and professionals dealing with stillbirth. Little is known about the causes of stillbirth and encouraging more parents to consider post-mortem will hopefully expand our knowledge in this area.”
Neal Long, Sands, Chief Executive said:
“The low rate of post-mortem up-take in the UK is a serious concern, yet too little is being done to address the underlying reasons, some of which are highlighted in this survey. We know this doesn’t have to be the case: in Scotland post-mortem consent rates have risen in recent years through commitment to improving the system and now 65% of parents consent to post-mortem.
“Investing in better training; increasing the number of perinatal pathologists, and ensuring all health professionals are better-supported will lead to a more efficient and effective pathology service for parents and staff. Seventeen babies are stillborn or die shortly after birth every day in the UK, parents want to better understand why their baby has died and should be given every opportunity to find out.”
Dr Tony Falconer, President of the Royal College of Obstetricians and Gynaecologists said:
“Previous reports by the Confident Enquiries highlighted the need to encourage parents to consent to post-mortems after a stillbirth in order to understand why perinatal deaths occur. This new research has shown that doctors and midwives need training to discuss the procedure with parents.
“It is a difficult time for grieving parents and they need skilled and highly trained professional support. For healthcare professionals, it can be a difficult subject to broach and they require appropriate support and understanding to cope with both the feelings of the family but also in dealing with their own private emotions.”
For more information please contact Naomi Weston, PR Officer, Royal College of Obstetricians and Gynaecologists: firstname.lastname@example.org / 020 7772 6357
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Heazell A, McLaughlin M, Schmidt E, Cox P, Flenady V, Khong T, Downe S. A difficult conversation? The views and experiences of parents and professionals on the consent process for perinatal postmortem after stillbirth. BJOG 2012 DOI: 10.1111/j.1471-0528.2012.03357.x.