“The communication and support from the health professional is incredibly important”: A qualitative study exploring the processes and practices that support parental decision‐making about postmortem examination

Abstract

Background Consent rates for postmortem (PM) examination in the perinatal and paediatric setting have dropped significantly in the United Kingdom, the United States, and the Western Europe. We explored the factors that act as facilitators or barriers to consent and identified processes and practices that support parental decision‐making. Methods A qualitative study conducted with bereaved parents, parent advocates, and health care professionals in the United Kingdom. Analysis was conducted on 439 free‐tect comments within a cross‐sectional survey, interviews with a subset of 20 survey respondents and 25 health professionals, and a focus group with five parent advocates. Results Three broad parental decision‐making groups were identified: 1, “Not open to postmortem examination”; 2, “Consent regardless of concerns”; and 3, “Initially undecided.” Decisional drivers that were particularly important for this “undecided” group were “the initial approach,” “adjustment and deliberation,” “detailed discussion about the procedure,” and “formal consent.” The way in which these were managed by health care staff significantly impacted whether those parents' consented to PM, particularly for those who are ambivalent about the procedure. Conclusions We propose a set of recommendations to improve the way PM counselling and consent is managed. Adopting such measures is likely to lead to improved family experience and more consistent and high‐quality discussion regarding PM.

A pragmatic evidence-based approach to post-mortem perinatal imaging

“…Some bereaved parents will have clear views regarding their level of acceptance for invasiveness of a standard autopsy; however, a subset will be undecided. ‘Decisional drivers’ [ 48 ] include an open approach by a trusted practitioner, adequate time for deliberation and adopting an individualised approach (both in the required depth and amount of information provided). There is rarely a ‘correct’ answer, and each parent will need to feel supported in their personal patient journey [ 46 ].…”

Improving uptake of perinatal autopsy

“…Lewis et al (30) conducted qualitative analysis on free-text survey responses from bereaved parents as well as interviews with bereaved parents, parent advocates and health professionals, to explore the factors that act as facilitators or barriers to autopsy.…”

“Why didn't we do it”? Reproductive loss and the problem of post-mortem consent

“…Perinatal post-mortem includes deaths occurring as a result of miscarriage, termination of pregnancy, stillbirth, neonatal and late neonatal death, and infant deaths up to one year. It can play an important role in understanding the cause of death of babies and infants (Downe et al, 2012;Lewis et al, 2019). Medical research continues to show, however, that consent for such post-mortems is decreasing (Lewis et al, 2019;Stock et al, 2010), and that both giving and taking consent remains a difficult topic for both professionals and parents (Heazell et al, 2012).…”

“…It can play an important role in understanding the cause of death of babies and infants (Downe et al, 2012;Lewis et al, 2019). Medical research continues to show, however, that consent for such post-mortems is decreasing (Lewis et al, 2019;Stock et al, 2010), and that both giving and taking consent remains a difficult topic for both professionals and parents (Heazell et al, 2012). Studies have identified a number of reasons as to why parents don't want to consent their baby for postmortem.…”

“…Finally, most studies on post-mortem identify religion as a key reason as to why parents don't feel able to consent. This can affect parent decision-making in a range of ways including, for example, concern that the post-mortem process will delay burial arrangements (Heazell et al, 2012;Downe et al, 2012;Ben-Sasi et al, 2013;Lewis et al, 2017Lewis et al, , 2019Rankin et al, 2002;Kang et al, 2014;Breeze et al, 2012).…”