Specialist nurses boost consent to post-mortem child research
12 March 2009
A study published today by researchers at the UCL Institute of Child Health (ICH) and Great Ormond Street Hospital (GOSH) suggests that most parents are willing to consent to post-mortem research on their children, providing that they are approached by specialist nurses experienced in bereavement and family counselling.
Post-mortem research is crucial to understanding cases of sudden, unexpected death in children. Following the Alder Hey organ retention scandal, however, in which children's tissue was retained for research without consent, recent changes to legislation and coroners' rules have made it difficult to carry this out.
Most cases of unexplained death in children are automatically referred to the coroner, who cannot authorise tissue to be kept for research without explicit parental consent. But many coroners are neither trained, nor have the resources, to seek parental consent, and contacting newly bereaved parents to obtain consent is often seen as unethical, say the authors. As a result of this, tissue is disposed of, as it must be by law, and so lost to research.
In a bid to reverse this trend, researchers at the UCL ICH and GOSH - including Dr Andrew Taylor, Principal Investigator and lead of the Magnetic Resonance Imaging research group at the UCL ICH - piloted a telephonic consenting system as part of a Department of Health 'less invasive autopsy' study. Before the post-mortem, a 'family liaison sister' experienced in dealing with bereaved families contacted 32 sets of parents whose children were aged between 1 day and 7 years when they died. On average, she approached parents two days after their child's death, to ask if they would consent to non-invasive (magnetic resonance) imaging of their child.
In all, 99% of parents gave their consent, with the vast majority of parents (28 out of 32) agreeing to the imaging when first asked. Their main reasons for agreeing were the chance that this would help other parents in the future, and their understanding of the importance of post-mortem research as such. Agreement was also subsequently obtained in writing.
Dr Sudhin Thayyil, one of the project's key researchers, says: "The results show that it is likely that most parents will, in fact, consent to a less invasive autopsy procedure such as MRI following fetal, neonatal or childhood deaths. We expect that this research will have a significant impact on how post-mortems are conducted in future."
The small-scale study, entitled 'Prospective parental consent for autopsy research following sudden unexpected childhood deaths: a successful model', is published today ahead of print in the Archives of Disease in Childhood.
The authors said: "Contrary to the popular belief that newly bereaved parents would react angrily to such an approach, we found that most parents viewed the process positively and did not have any objections to the telephone approach [...]. It appears that the opportunity to discuss the post-mortem process soon after death with a bereavement nurse was beneficial to [them]".
However, coroners were reluctant to take part, with only two out of twenty agreeing; and, although 76 cases were eligible, permission to contact the parents was only granted in 32 of them. The authors say that this highlights the need for a unified national approach to address this issue.
This study has formed part of a larger UCL ICH and GOSH collaborative investigation into the use of post-mortem magnetic resonance imaging as a less invasive form of autopsy. The aim of the project is to find out whether post-mortem MRIs can provide the same level and kind of information as conventional autopsy; the group has completed over 340 cases, and it is by far the largest study of its kind in the
world. The aim is to complete 600 cases by end of 2010.
The UCL Institute of Child Health is, in partnership with Great Ormond Street Hospital, the largest centre outside the US devoted to clinical and basic research and postgraduate teaching in children's health. It pursues an integrated, multidisciplinary approach to enhance the understanding, diagnosis, therapy and prevention of childhood disease. It covers a broad range of paediatric issues, from molecular genetics to population health sciences.