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

Abstract

<h4>Objective</h4>To describe the experiences, knowledge and views of both parents and professionals regarding the consent process for perinatal postmortem.<h4>Design</h4>Internet-based survey.<h4>Setting</h4>Obstetricians, midwives and perinatal pathologists currently working in the UK. Parents who have experienced a stillbirth in the UK in the previous 10 years.<h4>Sample</h4>Obstetricians, midwives and perinatal pathologists registered with their professional bodies. Parents who accessed the Sands website or online forum.<h4>Methods</h4>Online self-completion questionnaire with both fixed-choice and open-ended questions.<h4>Results</h4>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%).<h4>Conclusion</h4>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.