Less invasive investigation of perinatal death
BMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h3598 (Published 08 July 2015) Cite this as: BMJ 2015;351:h3598
- Owen J Arthurs, academic consultant paediatric radiologist1,
- Charlotte Bevan, bereaved parent and senior research adviser2,
- Neil J Sebire, professor of paediatric pathology1
- 1Great Ormond Street Hospital for Children, London WC1N 3JH, UK
- 2Stillbirth and neonatal death charity (Sands), London, UK
- Correspondence to: OJ Arthurs owen.arthurs{at}gosh.nhs.uk
Whether a baby is stillborn (dies before or during labour after 24 weeks of pregnancy) or dies in early life (a neonatal death) bereaved parents may not be best served by current approaches to investigating their baby’s death. The NHS routinely offers standard autopsy, with incisions to the body to examine internal organs. Although this type of perinatal autopsy provides useful additional information in 30-40% of cases, a falling minority of parents agree to it.1 Some do agree, for altruistic as well as personal reasons—they hope that their child’s postmortem examination may contribute to the body of research that will shape future prevention.
Preliminary results from Europe indicate that almost all parents who decline standard autopsy, and are currently not offered an alternative, would agree to a less invasive autopsy.2 3 This comprises postmortem imaging and ancillary tests, with or without tissue biopsy. Less invasive autopsy has considerable implications for future clinical practice, because it could provide additional diagnostic information for more families as well as for public health and for evaluating the quality of obstetric and neonatal care, where data are currently missing in many cases.
After publication of a study reporting 90% overall agreement between standard and less invasive autopsies for main diagnosis or cause of death,4 the less invasive autopsy is now beginning to be offered as a clinical service in the United Kingdom.5 The UK currently leads the world in such investigations in children and is on the way to establishing a network of hospitals that provide them. However, several uncertainties remain, including the most appropriate consenting process, the best imaging and sampling techniques, diagnostic accuracy across clinical scenarios, and the practicalities of wider implementation and delivery, such as training, geographical service provision, and transportation logistics.
The continuing fall in autopsy uptake is mainly due to reduced parental acceptance.1 6 This reflects concerns about cosmetic effects, further procedures on the infant, moral or religious objections, delayed funeral plans, and lack of understanding of the possible benefits. Moreover, standard autopsy results can take up to 12 weeks or more,7 and anecdotal evidence suggests that parents may decline further investigations if offered a possible “explanation” for the death by the clinical care team. It can be very hard to discuss with grieving parents (often with limited medical knowledge) the rationale for such an invasive procedure and to ask them to justify another physical “insult” to their child. This process can be much improved through staff education and training.8 In 2012, to overcome some of these challenges, the parent led charity Sands developed a new consent package for perinatal autopsy, with the support of the Human Tissue Authority and the Department of Health, but it may be too soon to see any effect on uptake.9
Components of less invasive autopsy
In paediatric and perinatal practice postmortem magnetic resonance imaging (MRI) is particularly accurate at identifying brain, cardiac, and renal abnormalities, but is less good for lung abnormalities such as infection.2 Other techniques, such as computed tomography and ultrasonography, have been evaluated but are limited by the lack of tissue contrast and well designed blinded prospective studies. Multicentre trials may be necessary, but there is currently little consistency in the use of postmortem imaging techniques between institutions and across countries.10
Postmortem MRI can also be used to make measurements usually made during autopsy, such as of organ weight and volume estimation.10 In some cases postmortem imaging may even be better than traditional autopsy—for example, when examination of the fetal brain is impossible due to autolysis. Postmortem MRI should therefore be the core component of less invasive autopsy, together with specialist review of the clinical history, external examination, radiography, and other investigations such as placental examination.
In some cases a diagnosis still cannot be made without tissue biopsies. The addition of endoscope assisted, or image guided, tissue sampling should provide an accurate and more acceptable approach to obtaining such material, without the requirement for large incisions.11 A Swiss study is underway to investigate the accuracy of automated paediatric and perinatal postmortem biopsies using a robotic system.12
Parental views on the trade-off between the acceptability of any investigation and diagnostic certainty now need to be examined to determine future developments. In addition to acceptability, improving reporting turnaround times is key to creating a viable clinical service. Any approach that reduces the need for lengthy laboratory processing and sample analysis should be welcomed.
Some clinical developments may have implications for such diagnostic approaches. For example, increasing use of ultrasonography for the diagnosis of fetal abnormalities in the first trimester means that terminated fetuses may be submitted for examination when they are too small to be imaged using standard postmortem MRI techniques, requiring novel imaging approaches to be developed.13
A timely, concerted effort is being made among health professionals, bereavement services, support groups, and charities to improve the quality of care around paediatric death in the UK. Emphasis is shifting towards the provision of a service driven by parental acceptability and involvement, rather than primarily increasing efficacy or reducing costs.
With better understanding of the benefits and limitations of less invasive autopsy, parents could be counselled with information tailored to their specific situation. This would enable them to choose the most appropriate and acceptable method for answering their clinical questions. The less invasive autopsy service should evolve to provide both maximal diagnostic yield and parental acceptability, to improve our understanding of perinatal deaths and, ultimately, work towards their reduction.
Notes
Cite this as: BMJ 2015;351:h3598
Footnotes
Competing interests: We have read and understood BMJ policy on declaration of interests and have no relevant interests to declare. OJA and NJS are funded by the National Institute for Health Research, who made no scientific contribution to this article.
Provenance and peer review: Not commissioned; externally peer reviewed.