A difficult conversation? The views and experiences of parents and professionals on the consent process for perinatal postmortem after stillbirth

Abstract

Please cite this paper as: 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;119:987–997. Objective To describe the experiences, knowledge and views of both parents and professionals regarding the consent process for perinatal postmortem. Design Internet‐based survey. Setting Obstetricians, midwives and perinatal pathologists currently working in the UK. Parents who have experienced a stillbirth in the UK in the previous 10 years. Sample Obstetricians, midwives and perinatal pathologists registered with their professional bodies. Parents who accessed the Sands website or online forum. Methods Online self‐completion questionnaire with both fixed‐choice and open‐ended questions. Results Responses were analysed from 2256 midwives, 354 obstetricians, 21 perinatal pathologists and 460 parents. The most common reason for parents to request postmortem examination was to find a cause for their baby’s death; the prevention of stillbirths in others also ranked highly. Perinatal pathologists possessed greatest knowledge of the procedure and efficacy of postmortem, but were unlikely to meet bereaved parents. The majority of professionals and parents ranked emotional distress and a lengthy wait for results as barriers to consent. The majority of staff ranked workload, negative publicity, religion and cultural issues as important barriers, whereas most parents did not. Almost twice as many parents who declined postmortem examination later regretted their decision compared with those who accepted the offer (34.4 versus 17.4%). Conclusion Emotional, practical and psychosocial issues can act as real or perceived barriers for staff and bereaved parents. Education is required for midwives and obstetricians, to increase their knowledge to ensure accurate counselling, with due regard for the highly individual responses of bereaved parents. The contribution of perinatal pathologists to staff education and parental decision‐making would be invaluable.

Professionals’ Practices and Views regarding Neonatal Postmortem: Can We Improve Consent Rates by Improving Training?

“…In addition, respondents here reported providing written information about PM to parents in 73% of the cases, which is higher than other national perinatal mortality survey data [2]. Many of the barriers to PM consent identified here are consistent with a related study of obstetricians and midwives, indicating that initiatives to address PM consent may have a more significant impact if they address maternity and neonatal care as a whole [5]. …”

Bereaved parents’ experience of stillbirth in UK hospitals: a qualitative interview study

“…21 This was an e-questionnaire, advertised through the website of Sands. In all, 760 parents completed the survey, 460 of whom lived in the UK and had experienced the interuterine death or stillbirth of a baby at 24-42 weeks' gestation, between 2000 and 2010.…”

Willingness to Know the Cause of Death and Hypothetical Acceptability of the Minimally Invasive Autopsy in Six Diverse African and Asian Settings: A Mixed Methods Socio-Behavioural Study

“…Those who would not accept the MIA in their capacity as health professionals raised concerns such as reluctance to approach bereaved families, fears of upsetting or shocking reactions, an increase in their workload, and, importantly, the fear of revealing errors in the pre-mortem diagnosis and management. All of these concerns have been previously reported in studies of the acceptability of the CDA [2,14,16,26–29]. In a study in the UK, healthcare professionals considered the MIA as or more acceptable than the CDA; however, its perceived accuracy was considered to be an important limitation [11].…”