Growing public distrust of medicine must be assuaged not encouraged
The NHS is bracing itself for public outrage at the content of the report on organ retention at Alder Hey Hospital, as HSJ goes to press. Its 600 pages have been trailed in advance as containing ‘shocking’, ‘grotesque’ and ‘macabre’ revelations. Health secretary Alan Milburn has blamed attitudes which stem from ‘1940s paternalism’ for the practices which led to the hospital keeping dead children’s organs without their parents’ knowledge or consent. But the mood of heightened tension whipped up in anticipation of the report is perhaps more akin to the hysteria surrounding fear of body-snatching in the 18th century.
None of this does anyone any good: neither the bereaved parents, nor the hospital and its patients, nor the wider NHS and its medical staff, nor in the longer term the wider public and the cause of medical research. This is not to dismiss the parents’ grief, nor to pretend that procedures at Alder Hey and elsewhere have been beyond reproach - clearly they have not. But there is a danger that lavish commitments to transparency in every aspect of the NHS’s involvement with often delicate and disturbing matters - particularly concerning death - will prove unworkable or else bring an end to post mortem research altogether.
The NHS has always had to deal with unspeakable topics - unspeakable because most people simply cannot bear to think about them. For the most part it has always done this efficiently and discreetly. The problem arises when its manner of doing so is exposed to relentless public scrutiny: efficiency and discretion may not be so easy to practise openly in front of grieving families, who might be better off spared the details of grim but necessary medical procedures. It may be a noble aspiration to declare that, in future, doctors seeking relatives’ permission for a post mortem will be required by law to explain exactly what procedures they plan to carry out and what will happen to the organs afterwards. In practice it would ensure permission was rarely given, or more likely never sought in the first place, leading to a consequent decline in investigations.
It could be that widespread refusal to consent will now be an inevitable result of Alder Hey. Public suspicion of scientists and scientific research is rife in the wake of controversy surrounding BSE, genetically modified foods, depleted uranium and MMR; on top of that, distrust of doctors has burgeoned since Bristol, Shipman, Ledward and others. If that happens, it would be a catastrophe. Post mortems are vital for training doctors, understanding disease and accurately recording causes of death. In ministers’ eagerness to satisfy the public’s desire for retribution at Alder Hey, details of how they plan to safeguard against this eventuality have not yet emerged. Of course it is repugnant to plunder corpses indiscriminately for no higher purpose than building a macabre museum of medical curiosities. But that is not and has not been the purpose throughout the NHS. Public fear and revulsion characterised the science of anatomy in its early days; they must not be allowed to do so again.