Body parts: part two
As the British Medical Association urges the UK government to promote the benefits of organ donation, read Dr Michael Fitzpatrick on the morbid anatomy of the body parts scandal.
‘For dust thou art, and unto dust shalt thou return.’ (Genesis; 3:19)
At the London ‘summit’ on organ retention on 11 January, Professor Liam Donaldson, the UK government’s chief medical officer, read out a letter from 10-year-old Naomi Robinson, whose brother’s organs were removed at autopsy at the Alder Hey hospital in Liverpool before she was born. She described these events as ‘awful’, explaining that it was ‘horrid’ to see her mother ‘getting upset and crying’ as ‘new things keep coming out all the time’.
Donaldson apologised on behalf of the medical profession for the fact that an estimated 50,000 organs appear to have been retained by hospitals around the country. While indicating measures to prevent this practice, he declared an amnesty, which would allow relatives to claim body parts so that funeral rites could be concluded.
Professor Donaldson’s mawkish publicity stunt is the latest episode in the scandal over body parts, which began when the inquiry into the high death rate at the Bristol children’s heart surgery unit discovered that some children’s hearts had been retained for research purposes following autopsy. In his interim report in May 2000, Professor Ian Kennedy blamed doctors for their ‘arrogance born of indifference’ for this practice.
Kennedy’s demagogic broadside unleashed a media furore and provoked wider inquiries. It soon emerged that similar practices were widespread – notably at Alder Hey and at the Princess Diana Hospital in Birmingham, where distressed parents rapidly formed committees to campaign for redress.
While leading figures from the UK Royal Colleges and the British Medical Association echoed Professor Donaldson in adopting postures of shame and humility, it soon became clear that this was a crusade that hurt many while benefiting nobody (with the possible exception of lawyers on the scent of litigation). Parents – like Naomi’s mother – are forced to relive their experiences of bereavement. Children – like Naomi – and other relatives have to endure the continuing impact of events in a past they may have hoped to leave behind.
Hospitals, overstretched trying to treat the living, are obliged to divert resources to investigate the fate of organs removed from the dead. Doctors keen to investigate diseases that are a continuing menace – from meningitis to variant CJD – now find relatives reluctant to agree to post-mortem examinations that may yield vital clues. According to the Royal College of Pathologists, the number of autopsies carried out last year fell below 4000, largely as a result of the scandal.
The retained organs scandal touches on sensitive issues arising from the place of the body – living and dead – in modern society. As a result of the decline of religious faith, which provided a source of identification and meaning outside the individual, the body has become the focus of individual identity, a trend encouraged by the consumer culture. The sense of self that arises from the body can be constructed and manipulated through the transformation of the body itself – through dieting, exercising and bodybuilding, tattooing and piercing, plastic surgery (witness the recent debate about breast implants for a British teenager).
The self for which every individual in our society yearns is located in a body which is slim, trim, highly sexualised and, perhaps above all, young and healthy. It is not surprising that when people make such a fetish of the living body, the spectre of its decay and ultimate demise becomes a problem:
‘After all, what could more effectively signal to the body-conscious individual the limitations on their reflexive ordering of self than the brute facts of their thickening waist lines, sagging breasts, ageing bodies and inevitable deaths?’ (1)
In the traditional societies of the past, death was not only more familiar. It was experienced more as a communal than an individual event. Furthermore, religious faith gave death a meaning and provided rituals which offered comfort and security to the bereaved. In the Christian tradition the belief in life after death – the immortality of the soul – means that the death of the body is not the death of the person. Hence the burial of the body, the ‘disposal of the mortal remains’, takes second place to praying for the ‘repose of the soul’ of the departed.
The collapse of belief in God, the privatisation and medicalisation of death have all contributed to making death a uniquely terrifying prospect in modern society. The narcissistic quest for health through austere regimes of diet and exercise, abstinence and discipline reflects a denial of the inevitability of death. As a result, the modern individual is left ‘exposed and unprotected in the face of their inevitable demise’ (2). Disenchanted with God and isolated from one another, we experience the ‘brute fact of death’ as shattering to our fragile projects of selfhood.
For a society which so worships youth and health and so fears disease and death, nothing could be more existentially devastating than the death of a child. The high level of public emotion surrounding the scandal of retained body parts of children reflects the scale of popular anxieties about issues of mortality. The popularity of TV dramas and documentaries about forensic pathology – and the success of the Hayward Gallery’s ‘Spectacular Bodies’ exhibition in London – indicate the wider public interest in these morbid themes.
It seems that the quest for the perfection of the body in life is now accompanied by a preoccupation with maintaining the integrity of the corpse. (This was also expressed in the furore over the removal of hands from victims of the Marchioness disaster, the continuing high-profile search for the body of Suzy Lamplugh, the extraordinary excavations in Vietnam for fragments of US soldiers who disappeared in the war more than 30 years ago.) It is at this point that the morbid public fixation on the dead body meets a very different discourse: that of scientific medicine.
The world of medicine has followed the organ retention scandal, in the early days with bemusement, latterly with mounting horror. At first, many doctors could not understand why such a fuss had arisen over what had long been standard practice. From the perspective that the body is a sort of machine for living in, over the past 300 years doctors have pursued the scientific study of dead bodies – with what the medical historian Roy Porter characterises in the title of his recent book as ‘the greatest benefit to mankind’. Doctors have long regarded death as offering a unique opportunity for studying the anatomy and physiology of both the normal and the diseased human body.
When I was a junior hospital doctor, one of my jobs was to ask relatives of the recently deceased to give their consent for a post-mortem. I used to explain that this was partly to confirm the cause of death, but also for research and teaching purposes. As I recall, we used to indicate that tissues might be removed and sent to the laboratory for further studies. Most families, believing – quite correctly – in the value of this process, set aside their current anguish and agreed.
In the process of autopsy, all major organs are methodically removed, weighed and measured, dissected and examined and specimens of various sizes removed. In a case where particular organs were diseased, it would not be unusual if they were retained, either for display (most teaching hospitals have an extensive museum of specimens) or study. The rest of the ‘mortal remains’ would then be returned to the body, which would be stitched up as well as possibly before being passed on to the undertaker.
It is difficult to know what level of consent to this process bereaved relatives, urged on by diverse zealots and pundits, and indulged by self-abasing doctors’ leaders, now want. Should they be shown a video of a post-mortem? Should they be provided with a list of organs, so that they can put a tick by the spleen and a cross by the heart? Should they be offered a choice of tissues which can be sent for further study – kidney (yes), testicles (no)? When does a certain amount of tissue amount to an entire organ? Should there be a limit to the scale of tissue samples – by weight or size?
Nor do the problems cease with the post-mortem itself. What are people expected to do with returned organs? Some relatives have indicated their intention to exhume the incomplete bodies and re-bury them with the missing parts. Some want to arrange a separate burial or cremation. While many will find this prospect unbearable, some may feel obliged to arrange some such ceremonial, notwithstanding the grief and expense involved. Should such funeral procedures be considered appropriate for organs such as the heart, but not the liver or kidneys (though these are also vital) or other organs or tissues? Will people now feel it necessary to inter amputated limbs – or excised appendixes, or even tumours?
Medical authorities are now queuing up to apologise for practices that have been routinely carried out for decades – without injury to anybody and with substantial benefits to many. Furthermore, they are proposing to replace existing arrangements with a system that is in every respect worse than the status quo. It is likely to cause immediate distress on a vast scale to families suddenly presented with organs of long-deceased relatives. It will cause continuing distress to the immediately bereaved confronted with a detailed interrogation about autopsy. It will do long-term damage to medical research, which will inevitably be deprived of opportunities for research on post-mortem specimens.
The price of appeasing the morbid fears of a society that cannot look death in the eye is a measure that will compound such fears, while setting back medical endeavours to combat the causes of diseases that result in premature death.
Dr Michael Fitzpatrick is the author of MMR and Autism, Routledge, 2004 (buy this book from Amazon (UK) or Amazon (USA)); and The Tyranny of Health: Doctors and the Regulation of Lifestyle, Routledge, 2000 (buy this book from Amazon UK or Amazon USA). He is also a contributor to Alternative Medicine: Should We Swallow It? Hodder Murray, 2002 (buy this book from Amazon (UK) or Amazon (USA)).
See the Body parts issue
(1) Phillip Mellor and Chris Shilling, ‘Modernity, self-identity and the sequestration of death’, Sociology, 27, 3: 411-31, August 1993
(2) Phillip Mellor and Chris Shilling, ‘Modernity, self-identity and the sequestration of death’, Sociology, 27, 3: 411-31, August 1993
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