The crisis over retained organs has had a devastating effect on pathology, says John Lilleyman
The retained organs affair began with the Bristol Royal Infirmary inquiry and the discovery that children who died following cardiac surgery had had their hearts removed at autopsy. This opened a trail to the infamous store of specimens at Alder Hey in Liverpool, after which many other hospitals in the UK admitted they also had postmortem collections. Bereaved parents, whose properly informed permission had never been sought, were anguished and sought redress.
Two years later, the problem continues to make news, as shown by a recent story about cot-death victims from the 1980s. Many families have been deeply distressed, and the full consequences for them, the medical profession and the government are still unfolding.
Pathologists, particularly those specialising in paediatrics, have been bewildered and dismayed. They never meant to do any harm and deeply regret inadvertently hurting people in this way. They had simply been doing what they thought was wanted of them in terms of discovering and defining disease, teaching medicine, and furthering medical knowledge.
They were carrying out autopsies as they had been trained to do, and until the latter half of the 1990s it would have been unusual for the procedure to be described in detail, to avoid unnecessary distress for the bereaved. Although by that time the need for better informed consent was being recognised, the ferocity of the retained organs earthquake, when it came, caught the profession by surprise and many were as distressed as the relatives who were berating them.
The effect of all this on pathologists and their work has been evident in four distinct ways. First, a few consultants whose morale and health collapsed have left medicine or taken early retirement. They have not been replaced, and some parts of the country have no paediatric pathology service. Second, coroners are fearful of approving the retention of any material in the autopsies they commission, meaning the information from such examinations is very limited and the cause of death may not be fully understood. Third, autopsies performed with relatives' consent, already in decline before Alder Hey, have all but disappeared. Valuable information is not being obtained, and clinical diagnoses made ante-mortem are not being verified, despite evidence showing more than one in ten may be wrong.
Finally, clinical research and other important uses of human tissue are being hampered or prevented. Ethics committees are frightened to authorise the study of any material unless there is documented prospective and detailed consent from patients or relatives. Importantly, they fail to recognise the fact that people view specimens removed from living patients differently from those taken postmortem. Also the value of storing samples for future tests that have not yet been developed (so cannot be consented to) is not sufficiently appreciated. The nervousness about tissue extends by default to blood or urine samples, and it is not just research that is being affected. Pathological specimens of all types are also important for undergraduate and postgraduate teaching and for quality control in diagnostic laboratories.
For these problems to be resolved everyone should understand why tissue samples and occasionally whole organs (particularly from infants where they are tiny) need to be kept as an integral part of an adequate autopsy. Where such material is to be used for teaching or research, pathologists and other doctors involved need to ensure that the relatives understand and agree. Everyone should appreciate that processed tissues and prepared microscope slides are a valuable part of a patient's medical record, even after death, and should not be destroyed since they will continue to provide information indefinitely. And new legislation surrounding the use and ownership of human tissue, together with sensible national guidelines on its interpretation, is needed to restore public confidence. All of these things are in progress and will gradually restore morale, confidence and trust. Many people have been hurt, but lessons have been learnt. Professional practice has changed and must now be allowed to recover.
John Lilleyman is president of the Royal College of Pathologists.