- Royal Liverpool Children’s Inquiry Report by Michael Redfern and Jean Keeling
Stationery Office, 535 pp, £40.00, January 2001
- The Inquiry into the Management of Care of Children Receiving Complex Heart Surgery at the Bristol Royal Infirmary: Interim Report: Removal and Retention of Human Material
Bristol Royal Infirmary, 56 pp, May 2000
- Report of the Independent Review Group on the Retention of Organs at Post-Mortem
46 pp, January 2001
- The Removal, Retention and Use of Human Organs and Tissue from Post-Mortem Examination
Stationery Office, 48 pp, £16.95, January 2001, ISBN 0 11 322532 6
I attended my first post-mortem in the summer holidays between leaving school and matriculating as a medical student. I have been to hundreds since, and am very familiar with the smell of a hospital morgue: meaty, like an old-fashioned butcher’s shop, with the added low-key, sickly-sweet pungency of unopened intestines and peritoneum so characteristic of an abdominal operation in life. Then there is the smell of burning bone from the reciprocating hand-held circular saw that the mortuary technician uses to remove the top of the skull after cutting the scalp from ear to ear and pulling it down over the face and hooking it temporarily under the chin. Familiar, too, is the scuffling and shuffling of feet just out of sight that means yet another policeman has fainted – ‘sorry, doctor, it was his first’ – and the solid snapping of the rib-cutters followed by a sucking and gurgling as the windpipe, its upper attachments, and the heart and lungs are removed from the chest as a single anatomical unit. But it is a quiet place generally – the low voices and swish of rubber boots on terrazzo floors an appropriate background to the mundane and usually routine business of investigating the causes of death.
I enjoyed pathology as a medical student. It became my ambition to specialise in laboratory medicine. I worked hard, did well, and was given a large and handsome bronze medal to prove it. It was sculpted a century ago by a member of the Wyon family, a well-known family of London medal-makers, and one of its faces shows a young frock-coated pathologist seated on an elegant stool in a laboratory equipped with Fin de Siècle bacteriological equipment. In his hand he is holding a heart, which he is gazing at intently. As the scene is a London teaching hospital one can be quite certain that informed consent had not been obtained from its owner’s next of kin. A hundred years ago, these hospitals were charitable institutions that gave free medical care to the poor. The only members of the middle class who regularly entered their doors were doctors, medical students, the chaplain and, after Florence Nightingale, nurses. The patients who died there were teaching aids, in life and in death, the assumption being that because they had sought the help of the hospital in a kind of eleemosynary contract, they had agreed in advance to everything pedagogic that would be done to them. It was still the normal way of working sixty years later when I was a student. So there can be little doubt that, had it been preserved, the heart on my medal would have joined the 100,000 and more organs, body parts and foetuses currently held in British pathology collections, the vast majority until very recently residing there quietly, without the knowledge or approval of the original owners’ families.
All this changed with Helen Rickard’s discovery that her daughter’s heart had been retained following the post-mortem occasioned by her death after cardiac surgery at the Bristol Royal Infirmary. In March 1996, Mrs Rickard watched a television programme about paediatric cardiac surgery in Bristol, which led her to ask the hospital for her daughter’s medical records. On learning from them that the child’s heart had been retained, Mrs Rickard got permission from the coroner to have it returned to her by the hospital. A Bristol Heart Children Action Group was set up and it embarked on discussions with the hospital to find out how much human material had been kept from children who had died after cardiac surgery. In February 1999, when the Action Group realised that the story was about to break, its members called a press conference so that the public should know about the retained hearts. In the meantime serious doubts about the quality of paediatric cardiac surgery at Bristol led to the setting up of a Public Inquiry; and in September 1999 a medical witness to the Inquiry drew attention to the large number of hearts held at the Alder Hey Children’s Hospital in Liverpool.
Very soon, media interest led to parents’ enquiries to Alder Hey, which revealed that a massive accumulation of organs – not just hearts – taken at post-mortem had been built up between 1988 and 1995 by the Professor of Foetal and Infant Pathology, Dick van Velzen. In the space of a few weeks, the hospital received more than six hundred enquiries from parents. It took its time over responding. In November a support group – Parents who Inter Their Young Twice, PITY II – was formed. At the beginning of December the new coroner for Liverpool announced that in his view organ retention was unlawful. Media interest and parent pressure intensified. The Government set up an Independent Confidential Inquiry under the provisions of the National Health Service Act 1977, chaired by Michael Redfern QC. Its procedure, the Secretary of State determined, would be inquisitorial. Its terms of reference were, in essence, to find out what had happened at Alder Hey.
Although Redfern’s Report, which was published in January, says that its main objective was to examine the long history of organ retention following post-mortem examination, particularly after the introduction of the Human Tissue Act 1961, nearly half – 190 – of its 427 pages of text are devoted to describing, analysing and judging the activities of Professor van Velzen. One of van Velzen’s jobs was to do post-mortems on newborn babies and foetuses as a clinical service for the NHS. But instead of completing them in the normal way by issuing a report within – at most – a few weeks on the naked-eye findings of the examination carried out on the day of the post-mortem, and on the results of histological examination, which takes longer because slides have to be prepared, he did the mortuary work only. He put off the histology, keeping multiple organs from each body. By the time he left Liverpool at the end of 1995, a very large number of organs from about 850 post-mortems had accumulated. They were stored in some two thousand containers, which he kept in his research laboratory away from Alder Hey. Redfern’s Report reproduces photographs of the laboratory itself and of the building – known as ‘Myrtle Street’. Unlit cellars with unplastered walls never look nice, and municipal hospital buildings put up more than a century ago were not designed to be welcoming. Like Alder Hey itself, Myrtle Street’s appearance is not softened by being built of hard red South Lancashire brick, dirtied by Merseyside soot.
So had van Velzen got himself into a position like that of the postmen one reads about from time to time, who lose their grip on the job and keep the letters at home instead of delivering them, hoping to sort it all out later but never able to because the mass of undelivered mail keeps growing? Redfern does not take this sympathetic view. It is clear from his report that he does not approve of van Velzen at all. The words ‘workload laundering’ and ‘fabrication’ appear more than once in paragraph headings describing his conduct. Worst of all, he is reported as admitting to the inquiry that he lied in post-mortem reports, describing the results of examinations he had never done. Under the heading ‘The van Velzen Years’ Redfern lists warning signals that should have been heeded, and concludes that ‘managerial inadequacy indulged Professor van Velzen’s aberrant behaviour.’
The National Health Service and the universities are nowadays supposed to be run by strong chief executives. How, then, did van Velzen fail to fulfil his contract but manage to remain in post for so long? A good part of the answer is that he occupied a boundary zone between the University of Liverpool and the NHS. Although appointed and employed by the University to conduct research, he was supposed to spend 6/11ths of his time providing a pathology service for the NHS. The arrangement for the staff supporting his work was also complex: two junior doctors, a secretary and a technician were funded by a medical charity, the Foundation for the Study of Infant Deaths, and were employed by the University. Four diagnostic service technicians were employed by the NHS. Complicated arrangements like these are the norm in Britain, but they are perennial sources of difficulty for medical schools and the hospitals associated with them. The organisations have different missions and defend their budgets with vigour. Hostility between medical academics and ordinary doctors is also perennial. The endless problems endured by Joseph Lister, the 19th-century pioneer of antiseptic surgery, provide the classic example.
The difficulty derives from the attitude exemplified by George Wallace, the former Governor of Alabama, when he described academics as ‘pointy-headed professors who can’t even park their bicycles straight’, and from the feeling of ordinary doctors that their academic colleagues regard them as nothing more than hewers of wood. All this means that the academic-NHS interface must be actively managed: historically, and in the majority of institutions, it has not been. I know from personal experience that when the statutory liaison committees have their infrequent meetings the main item on the agenda will be tea and biscuits. In most medical schools and hospitals, the worst that usually happens is an occasional episode of localised inflammation.
An enormous abscess developed at Liverpool, however. Its causative organism was Professor van Velzen. But many other factors helped it to grow. The Chair to which he was appointed was inadequately funded to pay both for the research and the NHS work expected of its holder. The University took a gamble when they appointed him because he had not yet proved himself to be a productive researcher. ‘One could wish that for a few more years he would have a benevolent but strong boss on whom he could lean and who would ride hard on him,’ an external member of the appointments panel had said. The advice wasn’t taken and he was allowed to build his own little empire away from the hospital and other university departments. When it was eventually decided to get rid of him because of his failure to satisfy the NHS, there were many impediments to such action – not least the lack of harmony between the University and the NHS.
The abscess burst when parents found out that organs from their dead children had been retained. Their reactions were vigorous and understandable. Redfern quotes:
‘They gave me skin and bone back.’
‘Alder Hey stole 90 per cent of my child.’
‘I feel devastated . . . I am wondering how much of her body was left.’
‘I have learnt to live with my daughter’s death and now I have found out that they removed her heart. It is like losing her all over again.’
‘Studying her brain would help explain why her brain did not form properly and it might help treat the next child born with a similar condition. Unfortunately her brain has not been studied. Instead it sits in a jar in a storeroom somewhere.’
The parents’ problems were compounded by the inability of Alder Hey to respond to their enquiries promptly or accurately. Because van Velzen’s large collection of organs had been poorly curated and inadequately catalogued, the hospital did not know precisely what it contained and what had already been destroyed. Swamped by the large number of enquiries, it gave too low a priority to identifying which organs it had and to passing the information on to parents in sensitive ways. Months after the crisis began, new information was still coming to light. As late as August 2000 parents who thought they were unaffected were told by phone that organs had been retained from their children. When the existence of a collection of cerebellums was revealed, it meant a third funeral for some parents.
Until the passing of the 1832 Anatomy Act the only bodies legally available for dissection by anatomy students were those of hanged criminals. Although an Act of Parliament in 1752 had given judges discretion to substitute dissection for hanging in chains on a gibbet in certain cases, the supply of bodies never met the demands of the dissecting rooms. Body-snatchers – the Resurrectionists – worked in gangs to exhume the bodies of the freshly interred, though medical students, too, stole bodies from graveyards. The public’s reaction was vigorous, echoing that of the relatives of those criminals who were condemned as part of their sentence to be dissected after execution. Their relatives often appeared to be more distressed by this than by the execution itself. There were fights on the scaffold with the surgeons, who often lost; and at least one surgeon was murdered by a relative for taking part in a dissection.
Watchmen were used to guard graveyards, but the Resurrectionists often bribed them. In Aberdeen medical students were encouraged to obtain ‘subjects’ by the local medical society. Graveyards within a twenty-mile radius of the town built watchtowers – some are still there today – and heavy iron cages were placed over coffins at interment and left there for several weeks. Morthouses were erected. The most sophisticated was at Udny, where an oak turntable was set up inside a circular granite building. Each time a coffin was deposited the turntable was moved round a few feet. When a coffin had travelled full circle it was taken out and buried. By this time decomposition had made the body useless for dissection. Security was achieved by an outer door made of a double thickness of oak studded with iron bolts, and an inner iron one which slid up and down in grooves. Built in 1832, the building and its fittings cost more than £100.
An equally determined demonstration of public feeling was the destruction of an anatomy school in Aberdeen in the same year, occasioned by a dog unearthing human remains in the ground behind the new school. A crowd entered the building, chased the anatomist away, and found three partially dissected bodies. They were covered with clothing and borne round the town. The building was set on fire and razed to the ground. During the riot the Lord Provost, magistrates and special constables arrived, to cheers. ‘If the feelings of the public had been hurt . . . every enquiry would be made, and every satisfaction afforded,’ the Lord Provost promised.
Redfern’s investigation into organ retention is not the only one there has been. Events at Bristol brought the circumstances at Alder Hey to light, and the Inquiry into children’s heart surgery there published its Interim Report on the ‘Removal and Retention of Human Material’ in May 2000. A third inquiry is now taking place in Scotland, where the legal apparatus for the investigation of the causes of death is very different. The Scottish Independent Review Group on the Retention of Organs at Post-Mortem published its first set of findings and conclusions in January this year. In many ways these other reports are unlike Redfern’s. Their tone is not inquisitorial and they look at overall patterns of practice. Ian Kennedy and Sheila McLean, chairs of the groups that produced them, are professors of medical ethics. Like Redfern, they describe past medical practice as ‘paternalistic’: doctors did not come clean with relatives about the full implications of a post-mortem for the corpse but misguidedly tried to protect their feelings by keeping silent about the details. Evelyn Waugh has been read, so the reports only use the phrase ‘loved one’ twice to describe the deceased. They agree that the law is a mess, and will need changing to bring it into line, so that ‘every satisfaction’ is ‘afforded’, in the words of the Lord Provost. Consent for a post-mortem must be got sensitively, but the process will also have to be explained.
The media have played a central role in the story. The publication of Redfern’s report led to banner headlines: ‘Horror of Organs Hoard’ (Evening Standard), ‘Scandal of the Organ Hoards’ (Daily Telegraph), ‘The Basement of Horrors’ (Independent). Others – ‘The Baby Butcher’ (Mirror) and ‘He Stripped the Organs from Every Dead Child He Touched’ (Guardian) – featured van Velzen alone. The Sun (‘My baby’s body was on a dirty table in 36 jars . . . I put them in a carrier bag’) accused doctors of playing God and cited Harold Shipman as another example of this. The Daily Express (‘Monster’) warned that people’s readiness in future to give permission for organs to be removed might be affected. It has been. In some English centres transplant surgeons have reported that no donations have been received since Redfern was published. It is clear from what they wrote that many reporters did not know, and still do not understand, that at a routine post-mortem the brain, heart, lungs, liver, intestines and kidneys are removed from the body, sliced, examined and then returned. This ignorance probably fuelled the outrage that followed Redfern’s revelations and it may help, in part, to account for the view that Alder Hey was the worst disaster ever to befall the NHS. I disagree with Alan Milburn, the English Health Minister, about this. Far worse was the Stanley Royd Hospital salmonella outbreak in 1984 when longstanding bureaucratic bungling, penny-pinching, professional failure and managerial incompetence led to the deaths of 14 psychogeriatric patients and the infection of nearly four hundred others. Unfortunately for them, paternalism on that occasion was in short supply.
Post-mortem practice in Britain has changed irreversibly because of the events of the last two years and the attendant publicity. Some pathologists have been frightened by the hostility directed at them. All feel pilloried. To be cast as an insensitive ghoul hurts, particularly if one is an introvert – a characteristic of the species – who spends most of the day sitting at a microscope diagnosing cancer in the living. The leader of the last cohort of pathologists to add significantly to general medical knowledge by inspecting organs in the post-mortem room was Karl Rokitansky, who performed more than thirty thousand post-mortems at the Allgemeines Krankenhaus in Vienna. He died in 1878. Practice has changed since then and examination of very thin slices of tissue under the microscope has been the key technique. Galleried pathology museums with large collections of organs in glass pots used to be central to pathology teaching. Years ago they were advertised as attractions in medical school calendars. But the one in my old medical school in London closed in the mid-1960s and was converted into laboratories used for work on viruses and the development of magnetic resonance imaging. Thanks to MRI and other enormous advances in diagnostic methods, the hospital post-mortem is valuable chiefly as an audit tool. The role of the pathologist is like that of the investigator of plane crashes, who pores over the wreckage to find out what went wrong and to learn lessons from it. In recent years hospital doctors have stopped asking for post-mortems. In England and Wales the number has fallen from 19,367 in 1984 to 3335 in 1998. It seems very likely that the Alder Hey disaster will accelerate the decline: that the discretionary hospital post-mortem – as opposed to those ordered by coroners and procurators fiscal, which do not need permission from relatives – will disappear altogether as an audit tool.
The Chief Medical Officer of England published his advice on future practice on the day the Redfern Report was released. If the recommendations in The Removal, Retention and Use of Human Organs and Tissue from Post-Mortem Examination are followed it is likely that keeping even the smallest piece of tissue for more than a limited time will become illegal. While this would put an end to the debate and satisfy public opinion, it would also close off a line of investigation into disease to which there is no alternative. A good example is the work currently being done by Jeffery Taubenberger on influenza. In 1918 a strain of the virus killed about twenty million people, many of them young, fit and previously healthy. No one knows why it was so virulent. Taubenberger is painstakingly reassembling its genes to find out. He is rescuing them, using the methods of molecular biology, from minute pieces of lung removed at post-mortem from US soldiers who died in the outbreak and preserved ever since in Oxo-cube sized paraffin blocks at the Armed Forces Institute of Pathology in Washington DC. This Institute was established by Abraham Lincoln, who ordered that whenever an Army doctor removed tissue from a patient, a sample of it had to be sent to the Institute’s repository. Its library of tumour tissues has made it the world’s reference centre for cancer diagnosis.
One of the Chief Medical Officer’s recommendations for England is the creation of a Retention of Organs Commission. The Commission’s office has now been set up in Hannibal House, one of the Health Department’s London buildings, some staff have already been appointed and the Anatomy Inspectorate will be involved, which is a good thing. Established by the 1832 Anatomy Act as the very first government inspectorate, it works well, particularly since the use of unclaimed paupers’ bodies for dissection ceased with the introduction of the Welfare State. Voluntary donations meet all current needs. For me, the respect shown by medicine for the dead is exemplified by the formal service my university holds every year in its 16th-century chapel in honour of those who left their bodies for dissection. The chapel is always full.