The Coronial Office in Context

The history of the Coronial Office in England is one of slow expansion from the twelfth to early nineteenth centuries, during which the majority of coroners were legally, rather than medically, qualified.⁵ On average in England, they consistently dealt with about 5 per cent of all reported deaths from the early modern to modern period. Their main official responsibility was to investigate ‘unnatural deaths’ in the community. They did so by sifting gossip, and retrieving any relevant physical evidence at the scene of a death until foul play could be ruled out, or not. Coroners were under legal instruction, however, to wait until a suspicious death was reported to them. They had no official powers to investigate an unusual death. Legislation did not permit them to act just because they suspected that an unnatural or violent act of some description had occurred in their area of authority. Once, however, a suspicious death was reported officially to them and they had retrieved a dead body in their jurisdiction, they had a great deal of discretionary power. They could, for instance, decide how much to cut open the deceased or to leave the body intact. Each coroner could also waive the need for an Inquest if a cause of death in their opinion was obvious at a suicide or the scene of an accident at work or in the home. In this way, Coronial justice was often ‘remade from the margins’ because it involved a lot of discretionary powers of decision-making delegated to individual coroners.⁶

In suspicious circumstances, coroners have always been required to co-ordinate a ‘view of the body’.⁷ Normally from the thirteenth to the early twentieth century, this occurred within twelve hours of death. It involved calling a jury to service, composed of up to twelve local ratepayers respected for their social standing. The jury would congregate at a public house or another convenient place such as a gaol room or town hall. Here, a coroner’s assistant laid out the dead and jury members undertook a visual inspection of the deceased, looking for flesh wounds and suspicious bruising. This autopsy meant literally looking at the external appearances during the ‘view of the body’. At it, the coroner gave a verbal report that summarised for those assembled the physical evidence-gathering and general gossip garnered in the community. The jury under the coroner’s direction would then assess the circumstances surrounding the unexplained death and arrive at a verdict before releasing the body for burial. Disinterring bodies after Inquest was rare, even with new subsequent evidence. In the early Victorian era, formaldehyde replaced mummification and alcohol preservation of the body and tissues, respectively. Even so, it was hazardous to hold on to a corpse for long; contamination by contagious diseases, like cholera or diphtheria, was common. The smell of formaldehyde was also difficult to stomach and thus at the ‘view of the body’ chemicals tended to distort lingering synaesthesia impressions. The aim was thus to look quickly and get the body buried as soon as possible. By the 1880s, French morgues were introducing refrigeration techniques, and soon this was copied everywhere across Europe by the early twentieth century.⁸ Before then, it was vital for English coroners to conduct efficient enquiries in the thirty-six hours after death before the human material started to decompose. Putrefaction devalued human material from a forensic standpoint.

English coroners were under instructions to conduct themselves according to the legal principle of ‘the balance of probability’.⁹ In other words, provided the available evidence seemed to indicate that a death ‘probably’ looked ‘natural’, then the coroner had the discretion to pass a verdict without the need for an expensive Inquest. In the case of a drowning, this would be a suicide verdict, by way of example. Coroners were not required in law to prove that someone was guilty of causing that death. Nor did they need to abide by the legal stipulation that the accused was innocent until proven guilty in a court of law. Their role was to establish that neither manslaughter nor homicide was suspected, and, if it was, to refer on that serious matter to the local forces of law and order to investigate further and arrest the culprit. In which case, if it looked like a capital charge might go to the Quarter Sessions court, the coroner was duty-bound to ask a surgeon to perform a post-mortem on the dead body and report back to an Inquest jury.

From the 1830s, and following a concerted campaign in the Lancet, coroners slowly started to be medically qualified.¹⁰ They also tended to adopt standard post-mortem methods. Generally, this involved making a crucial incision from the neck to the naval, and across the chest cavity.¹¹ An appointed surgeon would handle the heart and major organs, as well as closely examine the brain, for any suspected violent injuries. Coroners might also call additional medical witnesses who had the requisite expertise in, say, the forensics of poisoning to establish a death by misadventure.¹² Likewise, an ‘unnatural’ cause of death could have been caused by a stabbing or a drunken brawl that got out of control. In which case, they could call on a medical man with a lot of experience in doing post-mortem examinations for high-profile cases tried at the Old Bailey in London. If subsequently at an Inquest a verdict of ‘murder’ was based on reliable medical evidence, the coroner would refer the matter to the appropriate legal authorities, and the dead person would be buried without further delay.¹³

The role of the coroner has always involved a very visual method of working. Looking at the surface of the body was important before medical science had X-ray technology, CT and MRI scans. There is therefore a long art history of the Coronial Office because such visual methods interested artists trained in life drawing who liked to sketch and paint dead bodies, and thus record coroners’ working-lives. For this reason, it is feasible to trace their broad development from the early nineteenth to early twentieth centuries through the medium of iconography. In Illustration 5.1, for instance, we see a typical satirical cartoon mocking the bumptious nature of the Coronial Office from the 1820s when arguments started to be made about the need to have medically, rather than just legally qualified coroners. The image thus lampoons an inept and legally qualified coroner who has little expertise in the metabolic mysteries of medical death. In this case, we can observe a blazing fire that may have warmed up a body, seemingly dead, but capable of resuscitation. To the disquiet of the surgeon on duty, it appears that the post-mortem he has been called in to perform in his clean pale apron might involve human vivisection. He wants to halt proceedings at the ‘view of the body’ because the so-called victim has in fact started to wake up. If the surgeon continues to cut the body in front of the assembled jury, he would be breaking the Hippocratic Oath ‘to do no harm’. Even so, the Coroner insists he carry on:

Illustration 5.1

©Wellcome Images, Reference Number V0010903, A Juror Protesting that the subject of the Coroner’s Inquest is alive; showing the dangers of blind faith in doctors when declaring medical death – Coloured aquatint by Thomas McLean, 26 The Haymarket, London, c. 1826, copyright cleared under creative commons Attribution Non-Commercial Share Alike 4.0 International, reproduced here under (CC BY-NC-SA, 4.0), authorised for open access, and non-profit making for academic purposes only.

By the late nineteenth century, the Coronial Inquest was held in private, away from prying eyes in a specially designed morgue. Seldom were the jury present by this time. Reporting the facts of forensic science at an Inquest court became accepted practice. Cutting the corpse involved hence a close working partnership behind closed doors between coroners, pathologists and anatomists working in tandem. We see this typical situation in Illustration 5.2. A coroner handed over a man to the St Bartholomew’s Hospital dissection room who died a ‘natural death’. The coroner had the discretion to rule that the death was obvious as the man died in the care of the Poor Law authorities and thus there was no need for an expensive Inquest. On 7 July 1894, when the corpse arrived, an artist skilled in pathology sketched the face and chest of the friendless man in order to study the nature of decomposition, represented here with the grey-scale area of shading, spreading down the right side of his torso, in reality a blue hue. The weather was hot at mid-summer and this accelerated putrefaction, despite the corpse being injected via the carotid artery with formaldehyde to replace bodily fluids over a forty-eight-hour period.

Further record linkage work from data previously collected by this author confirms that the corpse was that of William Smith, aged 64, who died in Islington Infirmary at Highgate Hill, North London.¹⁴ Supplied by a Poor Law dead house, he was dissected, then buried. Initially the coroner concluded from a visual examination of the body that William Smith the pauper had died from a common disease of poverty, namely ‘phthisis’ [tuberculosis]. This made his body ideal for study because it came into the dissection room without extensive post-mortem cuts. We can thus observe in Illustration 5.2 how the head supported by a brick has no lancet marks on the chest, where normally a crucial incision happened at autopsy. In other words, this is exactly the sort of supply mechanism that coroners were co-ordinating with medical schools on a regular basis and it placed the Coronial Office at the forefront of the expansion of medical education in the growing Victorian information state.¹⁵ In total, anatomists dissected William Smith for ‘250 days’ until 11 March 1895. His remaining body parts were interred into a shared pauper grave, next to six other bodies. This status quo was to remain largely intact for the poorest people in society at the behest of coroners even after WWII.

Illustration 5.2

©Wellcome Images, Reference Number L0062513, Watercolour drawing done by Leonard Portal Mark on 7 July 1894, depicting the face and chest of a man (unnamed) to show the appearance caused by rapid post-mortem decomposition. It was made about twelve hours after death, during the hot weather of July 1894 at St Bartholomew’s Hospital dissection room, copyright cleared under creative commons Attribution Non-Commercial Share Alike 4.0 International, reproduced here under (CC BY-NC-SA, 4.0), authorised for open access, and non-profit making for academic purposes only.

In a third image, Illustration 5.3, we glimpse the modern situation during the late twentieth century. Instead of the coroner conducting a post-mortem in-tandem, the forensic examination has now been delegated entirely to a hospital pathologist. We can observe the cross-like pencil lines of the crucial incision down and across the torso. The equipment is sterile and resembles the design of an operating theatre, rather than an old late-Victorian morgue. There is a basin at the foot of the steel table to collect the major organs and any tissue samples retained for further pathological study or transplant surgery. Notice, too, the ridges on the steel table to scrub down the equipment after each post-mortem. The pathologist likewise wears surgical gloves and a disposable apron. To the rear are the large refrigeration units that keep the body fresh. Here there is little physical indication of putrefaction of the sort seen in Illustration 5.2. The coroner’s role is cleaned up, with the aid of biotechnology. The facial identities of both the pathologist and the body on the dissection table are indistinct: anonymity is an ethical choice here, but it also distances medical science from human stories and their hidden histories.

Illustration 5.3

©Wellcome Images, Reference Number L0029414, ‘Royal Liverpool University Hospital: a pathologist cutting open a body in the mortuary’, original drawing on site by Julia Midgley, Liverpool, 1998, artwork dimensions 42 x 29.7cm, copyright cleared under creative commons Attribution Non-Commercial Share Alike 4.0 International, reproduced here under (CC BY-NC-SA, 4.0), authorised for open access, and non-profit making for academic purposes only.

Further record linkage work confirms that at the Royal Liverpool University Hospital in the 1990s this unnamed body in Illustration 5.3 was one of nineteen bequests (see Chapter 4, Table 4.3) that passed into the official ownership of the medical sciences. Its donation point was co-ordinated and delegated to a pathologist on duty via the Liverpool Coronial Office. This third image is hence the logical expression of a century of scientific co-operation – by coroners, the forensic sciences, pathologists and dissection rooms – in order to cement professional status. It represents what happened to Mr Herbert Jones in our opening story too. The coroner for south Hampshire examined his body; a hospital duty pathologist confirmed the cause of death; but there was no further dissection at Bristol medical school. The coroner had the discretionary justice to decide otherwise in an explicit dispute about the deadline and its dead-end of life: one of many cases we will be encountering in this chapter.

One of the main reasons the coroner did not send Mr Herbert Jones automatically for dissection was that at the time of his death old legislation outlawing suicide had recently been changed. To allow for suicide (no longer illegal) but prevent euthanasia (still illegal), the coroner was now legally obliged to make sure that nobody else was involved in the decision of the victim to take his life, even those patients facing an imminent fatal medical prognosis: a context from 1962 that still occupies policy-makers today. The Suicide Act (9 & 10 Eliz. 2 c. 60: 1961) had only recently legalised ‘self-murder’. There was thus extensive debate in the press and medical journals at the time whether ‘doctors should prolong dying or not’.¹⁶ Debates about what constituted medical euthanasia appeared often in the media. Against that liberalisation of suicide backdrop, it remained, however, still illegal to assist an individual dying from a fatal prognosis in making the decision to end their life, termed ‘complicity in suicide’. According to Section 2 of the Act, which still remains in force in Britain: ‘A person who aids, abets, counsels or procures the suicide of another, or attempt by another to commit suicide shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years.’ Legally this can result in a charge of ‘conspiracy’ in ‘assisted dying’. The twelve letters that Mr Herbert Jones penned to his bank, legal representative, coroner, police and neighbours seem, therefore, to have been some sort of legal safeguard to make sure that this eventuality was ruled out at Inquest. The paper trail implied that he alone made the decision to commit suicide and donate his body to medical research. He was a careful and meticulous man, and thus his actions were in character. Even so, the coroner was sensitive to what amounted to his first case of this sort of suicide situation under the new legal guidelines. He acted conservatively, investigating the full circumstances of death and the ‘gift relationship’ attached to it. Using his discretionary powers, he ordered a post-mortem to clarify Coronial Office guidance, as to:

In other words, legally coroners could recommend verdicts according to the ‘balance of probability’; in practice, suicide and its assistance (or not) made it imperative for the coroner to dispute Herbert Jones’s explicit wishes.

Complicating this situation was the fact that the coroner was also working with another important context, and one of material significance to the eventual destination of the cadaver in this sad case. Herbert Jones self-evidently wanted to bequest his body to medical research. But whether it was suitable for donation or not could be disputed by those the coroner might decide to hand the corpse over to. If the cancer about to kill Herbert Jones riddled his dying body, then in death this made it of less material use for anatomical teaching. In which case, the body would be sent for cremation without delay once the coroner passed his verdict. If, however, the specific cancer was of research interest to medical science, then parts of the body and human tissue could still be used in part for further pathological study. Another alternative is that if the body did not have significant secondary tumours, but a key organ had deteriorated to such an extent that it threatened a patient’s life, then ‘parts of’ that dead body were still a very useful teaching and medical research resource. In other words, in hidden histories of the dead, the coroner had a very important role indeed to play in starting off the post-mortem after-life of human material that came into the Coronial Office jurisdiction: a factor seldom traced in the archives, and one which we will be elaborating on later when we encounter the detailed case of Carol Morris. In the meantime, the critical point to appreciate at this point in this chapter’s developing argument is that the type of Inquest ordered, given the diseased condition of the dead body, mattered a lot to its eventual destination for harvesting. Coroners typically faced two competing tensions in this situation – how much the pathologist should cut to complete death certification procedures and how a coroner could prioritise anatomists’ need for a clean corpse to dissect.

There is one final operational issue that many coroners had to work with. Most experienced moral pressure from grieving families to alter upsetting suicide rulings. Coroners thus typically recorded ‘accident’, ‘misadventure’ and ‘open’ verdicts on death certificates. In other words, disputed bodies were contested sites of multiple research agendas and reflected family sensitivities. That said, in Mr Jones’s case his wife and son had pre-deceased him. He died without family involvement. This case’s explicit body dispute was thus exclusively between the coroner and a dead person: the former over-ruled the latter because the dead, as we saw in Chapter 2, are Res Nullius – Nobody’s Thing. Herbert Jones’s post-mortem was thus akin to those of Keith Simpson, a leading pathologist who told the Listener magazine in 1977 that for all pathologists: ‘My patients never complain to me. If their illness is perplexing, I can put them in the refrigerator and come back later on.’¹⁸ Silent conversations in cold storage facilitated the medical sciences co-creating with the Coronial Office; yet these actor networks and their working arrangements remain opaque in the historical literature. Explicit body disputes involving those such as Herbert Jones sent for cremation rather than further study remain too often undisclosed in the paper trail of a bureaucracy that made these ‘mechanisms of body donation’ both function and malfunction. It is to this paper trail that we now turn. We begin by examining first some of the common systemic flaws in the system that processed and recycled the dead.

Auditing a System with Systemic Flaws

At the various public enquiries into the NHS organ retention scandals that led to HTA2004, a considerable weight of evidence was presented that the paper trail relating to dead bodies and co-ordinated by coroners, pathologists, anatomists or medical researchers was inadequate. At the time, the Chief Medical Officer Sir Liam Donaldson concluded that it was essential to carry out a full audit of all human material held in medical schools and Coronial facilities, as well as museums, to ascertain the extent of both historical and recent retentions. In a previous chapter we briefly discussed how the final report revealed that there were ‘105,000 organs, body parts and fetuses that had been retained in 210 English NHS trusts and medical schools’.¹⁹ Of these 210, ‘around 25 leading institutions accounted for nearly 90% of the body parts retained’. Michael Redfern QC, who conducted a separate public enquiry into organ retention involving the nuclear industry, likewise concluded there was: ‘a weak and poorly understood legal framework that had allowed bad practice to flourish’.²⁰ It was difficult not to reach the conclusion that medical scientists of all descriptions had intentionally kept patients and their families in the dark. In response, the Royal College of Pathologists issued a statement defending their position and proposing to conduct an extensive internal investigation into working practices. Even so, a concerted press campaign reported on how some pathologists with the co-operation of coroners had conducted ‘their business by stealth’. This use of emotive language to describe medical research as a ‘business’ drew widespread criticism from inside the medical profession. Many were stung by the quoting of an old English proverb: ‘A thief is a thief, whether he steals a diamond, a purse, or a small part of you.’ There was soon a cultural stand-off. Yet it was established by a series of timely new historical studies that the term ‘business’ was an accurate depiction of dissection and its hidden histories, which were closely associated with the Coronial Office and its pathology partners.

The ‘business of anatomy’ flourished because AA1832 permitted it to do so until HTA2004 became law (see Chapters 1 and 2).²¹ However, because the medical sciences had very little historical sense of their own inner workings, the paper trail that was created to make this system of supply function was never retained by those in charge. As a result, when scandals about the retention of human material reached the press, there was a tendency to apportion blame to HTA1961 or HTA1984 without appreciating that AA1832 had stated transparently the need to keep records. The original legislation did have a tracking system for its mechanisms of body supply. Until at least the 1930s this monitored human material much better than any modern legislation, with up to twelve certificates issued each time a body or part moved from source to dissection table. The flaw in the system was that, once audited, usually every three months, destroying paperwork became the norm to avoid unwelcome publicity. Civil servants misunderstood therefore what happened inside the system by the 1950s. They assumed there had never been a system of accountability in the past because they could not find evidence of it when drafting new parliamentary bills. Their modus operandi was thus to tinker with statutes, instead of overhauling them. As a result, histories of anatomy often assume, incorrectly, that AA1832 had no paper trail and audit procedures. The opposite was the case. There was a complex system with detailed paperwork: a classic case of the medical sciences needing to look forward to the past.

The anatomy ‘business’ was also enterprising and inventive. Staff sought practical solutions to overcome any operational issues in the most pragmatic way; and, it was logical to do so. That status quo reflected the fact that, as Joanna Innes points out, parliamentary statutes for centuries were written with ‘a sufficient level of generality to cope with diverse local circumstances’.²² From the Georgian era onwards, successive governments drafted legislation in a cursory manner because what was proposed ‘often did not commend’ itself ‘to eighteenth-century Britons’. This meant that when it came to medical reforms, discretionary powers shaped procedures. There was a high degree of discretionary justice deliberately written into ‘orders’ and ‘guidelines’ accompanying any new legislation. Coroners soon used those powers to develop close working relationships with anatomists and pathologists. So much so, Coronial officials often made up procedures as they got on with the task in hand. Over time, this created a sense that medical paternalism mattered more than death’s customary rituals in Britain. A lack of public accountability had a ripple effect in other parts of the global community too, notably in Canada, Australia, New Zealand and other Commonwealth countries, where the British legislative framework continued to shape medico-legal standards until the 1990s.²³ The odd thing about this backdrop is that AA1832 never intended this outcome.

When the NHS was created in 1948, new legislation gave the impression that teaching hospitals were now meticulous about the retention and disposal of human remains, but this was not always so. One example is illustrative of what could go wrong when procedures in morgues became disorganised. On Friday 14 December 2001, the Evening Standard reported on a case where procedures in a teaching hospital went awry. Paperwork was not properly attached to a dead fetus:

The Times some weeks later, on 13 January 2002, explained the events in more detail:

In reviewing this case, and the circumstances that led to it, Robert Bruce-Chwatt MBBS, MFTM RCPS (Glasg.), Senior FME, Metropolitan Police, concluded that there had been ‘an error of omission’ in the paperwork process when the fetus was placed in the fridge next to the laundry basket. He did not find ‘an error of commission’ involving organ and tissue harvesting of the sort practiced at Liverpool Children’s Hospital at Alder Hey by Professor Dick van Velzen.²⁶ The fetus had self-evidently come under the jurisdiction of HTA1984. When it was moved after being stillborn it should have thus been sent to the hospital morgue with the standard paperwork attached to it. But this had been ‘mislaid’ in ‘either theatre, the labour ward, or mortuary, with the soiled laundry’. It is thus a historical prism of the sorts of material anomalies that happened inside the system as soon as the dead were moved from one jurisdiction (hospital ward) to another (morgue, Coronial facility, pathologists’ lab). Along the way, parts of the person might be consigned as ‘clinical waste’ due to carelessness. For in the case under discussion, nobody could explain how exactly the stillbirth was taken out of the refrigerated drawer in the morgue and dropped into the laundry basket by mistake. Something had gone wrong, but who was involved remained undisclosed.

The fetus was found to be ‘5–6 months old’ when examined for forensic purposes, and it now had to be disposed of according to current regulations. But these were not necessarily what the general public would have expected either. There were three legal options. If the stillborn fetus was still intact (it was in fact in a poor state having been through a boil wash in the washing machine), then it came under the Burial Laws Amendment Act (43 & 44 Vict. c. 42: 1880). Where it was instead to be cremated (after its post-mortem), then this would be carried out in accordance with the Cremations Act (15 & 16 Geo. 6 & 1 Eliz. 2 c. 31: 1952).²⁷ Even so, if the pathologists found the fetus to be incomplete in terms of its identity, and thus its body was, strictly speaking, in parts (again, having been through a double-spin cycle), it was then in law defined as ‘clinical waste’. In which case, it could only be disposed of according to the Control of Pollution Act (Eliz. 2 c. 40: 1974), or the Environment Protection Act (Eliz. 2 c. 43: 1990). In other words, there should have been a careful paperwork trail, but it was omitted. All those involved expected the Coronial Office to use its extensive discretionary powers to put things right after a dereliction of duty.

These overlapping agencies and statutes are illustrative of the sorts of misunderstandings that could occur about the bureaucracy attached to the movement of the dead and their disposal in England. It exemplifies how the paperwork attached to the deceased was often delegated by default to the coroner, especially when things went wrong in NHS hospitals. Indeed, as Chapters 1 and 2 pointed out, the central flaw in HTA1961 was that everyone assumed that each hospital owned human material that died on its premises. They thus had the authority to dispose of their mistakes with the help of any coroners and pathologists on duty. Even after HTA1984 tried to correct this, the situation was further complicated by clause 42 of the Coroners Rules (SI 1984 No. 552), which ‘expressly provided that no verdict’ should be framed in such a way as ‘to appear to determine any question of criminal liability on the part of the named person or civil liability’.²⁸ In other words, even when things went wrong and hospital negligence was self-evident, Coronial rules meant that at a public Inquest there was no legal leeway to name either a negligent medical professional or an NHS facility as substandard. The facility staff might look morally culpable of contributing to a death, but it was not up to the Coronial Office to determine whether this constituted a criminal offence. The Times newspaper thus explained that if, for example, a man having a very bad asthma attack died as a result of a severe delay in the arrival of an ambulance, even when there was evidence of medical negligence and an ‘unnatural’ death, the coroner could not apportion blame.²⁹ The pathologist doing the post-mortem was correct to state that the deceased had died from ‘status asthmaticus’ [a prolonged asthma attack], but whether the circumstances surrounding the death decreased the patient’s survival chances or not, and to what extent these constituted ‘a lack of care’, was open to legal interpretation. Technically in dispute was not ‘the cause of death’ in such a case, even if the circumstances surrounding the outcome were in doubt. This common situation recurred often during the 1990s in landmark cases like that of Regina v. the Coroner for North Humberside and Scunthorpe involving a prisoner put on a suicide-watch because he threatened to take his life.³⁰ Due to a staff shortage, the man went unobserved for periods in his prison cell, and so died of asphyxia. Whether this was, strictly speaking, ‘self-neglect’ or due to ‘a lack of care’ was ‘blurred’. The question of how long the body should be retained and which parts of it should be taken for a criminal case (or not) remained contentious.

Coroners thus continued to act conservatively and often asked their designated pathologist to remove what ‘might possibly’ be required to determine ‘the balance of probability’: a judgement call based on their individual career experiences, as we saw in this chapter’s opening story of Mr Herbert Jones. To understand how this complicated medico-legal situation worked in practice, however, it is necessary to examine a broader selection of representative cases than the ones we have encountered so far in this chapter. In each, we can observe a coroner in conflict with those that claimed agency over the dead. The Coronial Office would nonetheless prove to have extensive powers of discretionary justice in the transplant era of the 1970s. The explicit disputes that occurred often exemplified the frustration that bereaved families felt to determine the material fate and resting place of their loved ones. Since this backdrop shaped a political consensus to pass HTA2004 and those new standards were adopted in many parts of the world, a detailed analysis of the role that coroners played in the circumstances that led to a system of informed consent to correct explicit disputes are of some relevance to this book’s central focus.

Coroner’s Explicit Disputes and Organ Donation Cards – The Alcock Case

In 1983, the Department of Health and Social Security (hereafter DHSS) had taken a strategic decision to re-launch a national organ donation campaign: outlined briefly in Chapter 2 and now elaborated with human stories here. The Conservative government of Margaret Thatcher was concerned that just 15 per cent of the population were carrying organ donation cards in Britain. As a result, the British Medical Association reported that transplant waiting lists were getting longer. The DHSS commissioned a number of social surveys to measure public opinion. These indicated that NHS patients were broadly in favour of donation, but this cultural trend did not translate into positive action. The DHSS therefore allocated a budget to raise the media profile of carrying organ donation cards, taking out expensive one-page advertisements in the national press. On the eve of the campaign, the actions of a coroner from North Staffordshire brought instead unwelcome publicity about explicit body disputes. The case was to highlight the extensive powers of coroners to requisition and hold on to human material without government or familial interference.

Thus, in December 1983, The Times reported on ‘a dispute over a Staffordshire coroner’s decision to stop the heart of a maintenance fitter being used in a heart transplant operation’. He had been ‘killed accidentally’ at work.³¹ The facts of the story were that:

Several hours later a ‘suitable patient was found at Harefield Hospital in Uxbridge, West London’ and an air ambulance was ordered. A helicopter flight was the quickest way to get the donated heart from Staffordshire to London. At the last minute, however, the deputy coroner for Stoke-on-Trent, Mr John Wain, informed the head of the transplant team that he had ‘unexpectedly called a halt to the removal of Mr Alcock’s heart’. The Coronial Office issued an official statement that ‘the pre-existing condition of the deceased’s heart might be relevant to the Jury Inquest in due course’ and this necessitated halting the transplantation. If the man had an underlying heart complaint, then his employers might be guilty of a breach in health and safety standards at work where he had died from an accident. There could therefore be legal implications from the case and his human material needed to determine liability or not.

The widow of Graham Alcock was upset by this turn of events. She disputed the moral right of the coroner to prevent what her husband had explicitly requested in writing on his organ donation card. Interviewed by David Cross of The Times newspaper, she complained ‘that the dying wish of her husband had not been honoured’.³³ As she stressed: ‘It seems he died in vain.’ The rest of her family were also critical of the decision. They thought it was counter-productive for the medical sciences. Mrs Dorothy Alcock (mother of the deceased) told the press: ‘Many people with organ donor cards could be dismayed that their wishes were not carried out. This has lost them hundreds of donor cards.’ Likewise, Mr Ray Alcock, father of the dead man, disputed the coroner’s actions, and in calling for a public enquiry declared: ‘It seems pointless to carry a donor card if the parents cannot carry out the wishes of their dead son.’ The transplant team supported their moral position. However, as a hospital spokesman explained, they had no choice. They had to ‘pay attention to what a coroner decided – We cannot argue about it.’³⁴ The Coronial Office was all-powerful at the dead-end of life: a procedural fact that would be debated extensively in the 1980s, as we shall see later in this chapter when we examine similar representative cases.

The coroner in this case, Mr John Wain, did in fact have a very good reputation for representing people in his local community over his thirty-year career. On his death aged 77 in 2014, after ‘a long battle with cancer’, the Stoke Sentinel described him as ‘a much loved character’ whose ‘life touched many in Staffordshire’.³⁵ He was regarded as fair-minded, and an advocate for the underdog, according to his colleagues. It was reported that he: ‘sprang from humble roots in the city’s neck-end [sic] and took his first fumbling steps into the legal profession as an articled clerk without even a law degree (back then)’. He obtained two A-levels, worked as journalist for a short time and eventually rose in the legal profession to run one of the busiest Coronial Offices in the country. In Stoke-on-Trent he was renowned for his human empathy, as a local obituary writer elaborated:

John Wain was also a keen advocate of opening up Coronial records if they could help further medical research into, for instance, the underlying causes of suicide in his district. In January 1999 he thus co-operated with a large-scale study covering North Staffordshire in which Wain had been the presiding coroner. Data was collected on ‘all cases of suicide’ and ‘undetermined injury’ between ‘1991 and 1995’ in which ‘212 cases and controls’ were identified.³⁷ The study team concluded that ‘the risk of death due to suicide and undetermined death was associated with: recent separation, relationship difficulties, experience of financial difficulties, history of past criminal charges or contact with the police, a past history of deliberate self-harm, being on psychotropic medication at the time of death and a diagnosis of bipolar affective disorder’. In a similar refrain, Wain had assisted with an NHS study into whether ‘pre-hospital deaths from accidental injury were preventable’.³⁸ Again he released Coronial records covering the period ‘1 January 1987 to 31 December 1990’ in which there were ‘152 pre-hospital deaths from accidental injury (110 males and 42 females)’. The important conclusion of this study was that: ‘Death was potentially preventable in at least 39% of those who died from accidental injury before they reached hospital. Training in first aid should be available more widely, and particularly to motorists as many pre-hospital deaths that could be prevented are due to road accidents.’ Wain was thus not the sort of coroner who would routinely hold up a heart transplant unless he believed it was necessary.

Nevertheless, the Alcock family thought he was guilty of having ‘stretched coroner’s legal flexibility’ (to use his obituary writer’s precise phrasing). Even so, whether the bereaved family had legal grounds to challenge what happened or not, what really mattered in the end to them was that Wain had the discretionary justice to act as he did and he brought about a dispute at a key discrete research threshold point in a donation process. Generating explicit disputes in a transplant era was, seemingly, often part and parcel of a coroner’s normal working-life. Since cases like this raise the issue of representativeness, it is important to explore general trends regarding the retention of human remains involving the Coronial Office covering elsewhere in England. As we shall see, other coroners also took a similar view of their extensive powers to be advocates for the bereaved but also to query organ donations and hold them up if necessary. An important case of Carol Morris outlined next is illustrative of general trends in the Midlands. It is, moreover, a significant story because it was to make medico-legal history by changing the law on the anonymity of organ donation in Britain and around the world (as we shall see in Part II of this chapter, where we discuss the case’s ingrained lessons and their historical longevity involving coroners).

The Carol Morris Case

On 6 August 1977, the BMJ carried a detailed report on the modus operandi of the coroner for Leicester City and South Leicestershire.³⁹ Since what he wrote was to have far-reaching consequences just three years later in another explicit body dispute, it is important to pause and consider the coroner’s detailed letter to the BMJ to set the scene in what became known as the Carol Morris Case. Mr Michael Charman explained in 1977 that he was legally qualified. On average, he oversaw about ‘1400 unexplained deaths’ every year in a busy area of the Midlands. He paid careful attention to the bereaved and tried where possible to relieve their stressful situation, as he explained:

Charman told the BMJ that he worked with one of four pathologists, and he carried on the tradition at Leicester of allowing the duty-pathologist to pass on a copy of his report to the bereaved family’s general practitioner once an Inquest had been finished. He was not legally obliged to do this, but he felt that it did alleviate grief. Often the GP was in a better position to reassure a family that the deceased had not suffered or been in a painful condition. In terms of the grey areas of these legalities, he elaborated that:

It would be precisely this medico-legal situation – a coroner having extensive powers to withhold information if he judged it to be in the public interest – and with the co-operation of his pathologist often pushed for time – which was to cause an explicit dispute that made national headlines. Events at Leicester by 1980 would prove contentious and ultimately change the terms of reference of working coroners everywhere in England. We begin with a tragic accident in the Carol Morris case files.

On 25 January 1980, Carol Morris, a young woman aged 16, was driving a moped in the early rush hour at Houghton-on-the-Hill village about 6 miles from Leicester city-centre.⁴² It was a cold and icy winter’s day. Near a crossroads in the centre of the village close to a garage, Carol Morris tried to join the oncoming traffic down the lane from her home. The location was notorious for car accidents where the B3129 crossed the A47. Tragically, in the inclement conditions a 40-foot lorry collided with the moped as it exited from a side road into the main arterial route into the city. Carol lay on the ground seriously injured. She was soon taken unconscious by ambulance to Leicester Royal Infirmary, where three days after the accident she died from her injuries. Carol Morris was carrying a donor card. Dr David Riley, a surgical registrar on duty, thus began the formal medico-legal process of checking on whether the accident victim was a suitable transplant donor. He needed to liaise with a transplant team at Papworth Hospital in Cambridgeshire to carry out a tissue match with patients on the organ donation waiting list covering East Anglia and the Midlands NHS regions. Because Carol Morris was aged 16, there were two lifestyle factors to assess. An evaluation of her general health condition prior to the accident was undertaken. The doctor found in her case-notes that it had been generally very good before the fatality. She was a fit and healthy young woman. There was every chance therefore that her kidneys (specifically ticked by Carol Morris on her organ donation card) would be healthy and ideal for transplant. The medical team also needed to assess the wishes of her bereaved parents and their familial relationship with Carol. She was aged 16 and so over the legal age of adult consent, but she was not yet 18 years old; therefore, her parents had guardianship of their daughter as next of kin. They wanted to respect Carol’s wishes to donate, and so the transplant team prepared the body without further delay. What happened next nevertheless was to cause considerable controversy – so much so that it generated a national debate in Parliament about the need for a change in the law to enshrine the principle of anonymity into organ donation programmes across Britain. The catalyst was the actions of the coroner for Leicester City, Mr Michael Charman, and the involvement of some journalists working for a number of popular daily newspapers who acted unscrupulously to get a news scoop.

Carol Morris remained on a ventilator until ‘her heart, kidneys and eyes were all removed for transplant’.⁴³ The heart was despatched by plane and car to Papworth Hospital in Cambridgeshire on the night of 28 January. The transplant team were waiting on it. The pathologist on duty did a careful tissue crossmatch. Then the leading surgical consultant, Mr David English, and his colleagues completed a successful operation on ‘Mr Nigel Olney a 35 year old man’ from Bedfordshire, a patient desperately in need of a new heart. He was in due course to be the fourth heart transplant patient at Papworth after the relaunch of its surgical programme in 1979. Olney lived for almost nine years before he needed a second (unsuccessful) heart transplant in December 1988.⁴⁴ He was thus one of the longest survivors at that time.⁴⁵ Meanwhile, the Papworth team had recalibrated their working practices with some success from 1973, as recent histories of the hospital explain:

In addition, in 1980, around the time of Carol Morris’s death, a British Heart Foundation Research Group established itself at Papworth. This initiative funded the additional staff needed to expand innovative heart transplant work. Indeed, from 1981, they were able to undertake heart-lung transplants on site for the first time. In no small measure then the heart of Carol Morris was to contribute to Papworth’s becoming the preeminent heart and lung transplant unit in the UK. Even so, although the staff that led the unit feature as ‘Papworth’s heroes’ today on the hospital’s public engagement website, and the fund-raising efforts of Mr Nigel Olney after his first heart transplant are detailed (with Christopher Hubbard), no mention is made of Carol Morris. She never became an official Papworth heroine. Evidently, once removed, a body part became a discrete research step – ‘Nobody’s Thing’. That remapped the whole person into a series of hidden histories of the body, the equivalent of a consignment in the cul-de-sac of history, omitted from the success story of biomedicine.

Once Carol Morris’s heart was transplanted, the rest of her body was still technically under the official jurisdiction of the Leicester City coroner. He was required to commission a post-mortem from his duty-pathologist since the road accident might later result in the police charging the lorry driver with death by dangerous driving. There would need to be material evidence of sudden death, made available at any subsequent prosecution. An Inquest was thus scheduled. Before it convened, however, the coroner noticed that there was a discrepancy in his pathologist’s paperwork. Dr David Riley, the surgical registrar on duty at Leicester Royal Infirmary the night that Carol Morris died, asked the coroner to authorise the removal of her kidneys. Carol stated this option explicitly on her organ donation card and so her parents decided to comply with their dead daughter’s wishes, as we have seen. However, the deceased did not tick any other organs for donation. There were separate cards for each organ at the time. The bereaved parents searched their dead daughter’s belongings in her bedroom but found nothing. Carol’s intention seems to have been to donate her kidneys, probably because (her parents thought) there had been a number of media campaigns to improve their donation in the national press over the previous three years or so under the auspices of the DHSS (as described above). The coroner, Mr Michael Charman, was very mindful of being sensitive to the parents’ shocking bereavement. Indeed, he had a long history of sharing pathologists’ reports with grieving families shocked by the sudden death of their relatives in tragic circumstances, as he had previously explained to the BMJ. He felt he was now in a very difficult medico-legal and ethical situation. He had been officially asked for the kidneys of Carol Morris but not her heart and eyes which, it seemed to him, had been harvested as ‘extras’ for organ transplant and grafting purposes, respectively. The parents told the hospital staff in Leicester that they were ‘keen’ for ‘all the organs to be donated’; they interpreted the fact of their dead daughter’s having a donor card as confirmation that she was a supporter of transplant surgery per se. The coroner nevertheless believed that in case of the need for a subsequent prosecution involving the lorry driver and the question of his legal culpability on the morning of the fatal collision, the dead body had to remain solely in a Coronial officer’s medico-legal jurisdiction. He felt the transplant team at Papworth Hospital was deliberately ignoring this legal consideration, with the support of their surgical liaison at Leicester Royal Infirmary. Together they had harvested more than he had authorised. There would soon prove to be a very difficult professional stand-off between all the interested parties at the Inquest.

The Inquest opened on the Thursday after the death of Carol Morris. Charman was mindful of the stressful situation for the bereaved family, but there were a number of pathology discrepancies that in his opinion required action. He stated that he felt very uneasy about what had happened and how much was harvested from the body of Carol Morris, having ordered that: ‘no organs could be removed in his area without his written consent, countersigned by the surgeon carrying out the removal’. This claim by Charman that the ‘body of anyone who had died suddenly was his to decide upon’ was, however, ‘contested at the Inquest’. Carol Morris’s father stated categorically that as far as his family was concerned his daughter wanted to be an organ donor, stated so explicitly on a donor card, and they needed to comply with her wishes under the tragic circumstances. To do otherwise would mean she had died in vain (echoing the sentiments of the Alcock case outlined earlier in this chapter). Even so, Michael Charman replied:

As the atmosphere at the Inquest was adversarial, Charman took the unusual step of calling a press conference afterwards. This upset the bereaved family, and with good reason, for since the death of Carol Morris they had been the focus of considerable unwelcome media attention. Before examining in more detail what the coroner said to the media, we first need to factor in what had been happening to the Morris family since the night of the fatality.

The Morris family had been under a media siege at Houghton-on-the-Hill since the death of their daughter on the night of 28 January 1980. So intense was the media intrusion that George Morris made an official complaint to the Press Council (hereafter PC) in London.⁴⁸ He told them that: ‘on the 1 o’clock news on 29 January it was reported that a heart transplant operation had taken place at Papworth hospital and that the family of the donor particularly wished to remain anonymous’.⁴⁹ He elaborated that ‘a [news] leak occurred and within three or four hours’ from someone working at Leicester Infirmary, Papworth Hospital or a PC news agency. The Evening News was the first media outlet to telephone the family for further information about the heart transplant that had taken place. Then the phone started to ring and ring. George Morris described how the phone ‘rang continuously’ from 1 p.m. to 5 p.m. when the family finally decided to ‘take it off the hook’. Events were, however, to get worse, as he explained:

The family felt that ‘particular newspapers, such as the Daily Mail … behaved especially badly’. They even contacted their ‘next-door neighbour, Mr. Stephen Turnbull, giving the impression that they were friends of the family requesting information’. George Morris explained that the way that the reporters worked was to inquire ‘about the donor card’ and only later admit that they were journalists seeking a news scoop. In the family’s opinion at such a sensitive time, they all felt understandably: ‘That is a despicable way of obtaining information.’ Yet, worse was to come.

George Morris alleged that one determined reporter for the Daily Mail (Sally Brompton) waited outside the Morris family home ‘from 10 am on 30 January until 6 pm’.⁵¹ She then ‘canvassed the village from door to door in an attempt to buy a photograph of Mr. Morris’ daughter Carol’. George Morris subsequently relayed to his member of Parliament how ‘Miss Brompton even attempted to persuade a 14-year-old girl to go into her elder sister’s bedroom to remove a photograph of Carol’. She finally toned down her actions when ‘at about 6 pm Miss Brompton left a card with Mr Morris requesting an interview at a later date’. The family had taken enough. They requested and were granted police protection by the Leicestershire constabulary. A police officer, posted outside the family home at Weir Lane in Houghton-on-the-Hill, also arranged for British Telecom to make the home telephone number ex-directory until further notice. Mr Morris did acknowledge to the PC that although the Guardian newspaper and the Leicester Mercury had obtained photographs of his dead daughter, they decided not to print them once it came to light that they had been obtained by unscrupulous means. Their editors had acted, in his opinion, with common decency, unlike all the other newspaper tabloids which had ‘not acted in a professional manner’ at such a tragic time. The family now found themselves in the middle of a media storm not of their making and one which the coroner for Leicester city centre was about to exacerbate by calling a press conference after the Inquest about an explicit body dispute.

Michael Charman explained to the media that he felt obliged to call a press conference about the circumstances surrounding the death and harvesting of the organs (heart, kidneys and eyes) from Carol Morris because he believed procedures were unethical and technically illegal. He clashed with Mr Bernard Hargrove, head of a legal team who appeared for the three transplant surgeons involved: one at Leicester and two at Papworth Hospital. The Medical Defence Union funded Hargrove. He insisted that since 1977 the Home Secretary had taken the view that ‘no coroner could refuse for the removal of an organ unless it was needed for criminal proceedings or had been faulty’.⁵² In the case of a fatal road accident arising from careless driving causing brain-stem death, the retention of the brain in question would suffice as material evidence of medical death at a criminal prosecution. Hargrove also insisted that in the opinion of most doctors it was their medico-scientific duty to facilitate ‘all organ donation’. Yet, as a newspaper reporter for the Guardian who was present at the Inquest press conference explained, it really came down to one key question in this controversial case: ‘Who has the ultimate right to decide’ on organ donation in a Coronial case – ‘the coroner or the family?’ Moreover, this raised an important procedural point too – ‘Could a coroner refuse permission for the removal of organs, even if the deceased carried a donor card?’ Charman defended that he was very concerned that the surgeons who removed the heart had effectively ‘disregarded the law of the land which says that my consent must be obtained’. He clarified that he was not accusing the transplant team of deliberately flouting the law – ‘What they did was make assumptions which didn’t exist and thought that they had got consent when it wasn’t there at all.’ Soon, the storm created encouraged other medical bodies to get involved in the widening debate about this and other explicit body disputes involving the Coronial Office in England.

The British Medical Association (hereafter BMA) was quick to respond, issuing a press statement that they were worried that the adverse publicity could dissuade other organ donors from coming forward in the future. If all coroners requested a written rather than a verbal consent (the latter was standard practice in some transplant units), then that might also delay the removal of a heart and render it unsuitable to transplant in time. But Charman pointed out that this was nonsense, since written permission from the coroner delayed matters for no more than ‘an hour at the most’.⁵³ Besides, he pointed out, in practical terms most donor patients were kept ‘on a heart-lung machine and time is not so vital, except at the moment of removal’. The Coroners’ Society for England and Wales (hereafter CSE&W) nevertheless joined in with the BMA’s concerns since both professional bodies were pro-transplantation. Dr Burton, a spokesman for the CSE&W, told the press that he had been a member of the Transplant Panel which had been convened to monitor the progress of transplantation, and in his experience: ‘For years we have been slowly moving towards the general public’s general acceptance of transplants as a routine matter of course. Every time this sort of thing happens’, where there is a stand-off between a coroner and the bereaved involving an explicit body dispute, ‘it sets the progress back years’. The assembled reporters thus asked Charman how he felt about contravening the family’s wishes. Did he consider whether he was going against the wishes of the bereaved and making things much more difficult for them? In reply, Charman defended: ‘No, I don’t. They must of course consent before my consent is asked for. I don’t think that in any way asking them for written permission affects it’ (that is, the decision to donate or not by the bereaved). He told the packed Inquest that the police had found that ‘there was not sufficient evidence to prosecute anyone for contravening the Human Tissue Act 1961’. Moreover, after hearing all the evidence collected from the roadside scene, there was no evidence that the lorry driver was guilty of dangerous driving. It was a tragic case; in the end, the coroner recorded a verdict of ‘accidental death’.

At the close of the public controversy, the BMA issued a further statement. They did so to clarify that each Coronial official should have sole jurisdiction of bodies in unexplained circumstances. And yet, they went on to state that HTA1961 gave ‘the next of kin ownership of their loved one’ when they were a whole person, whereas ‘the removal of parts of it must be up to a coroner’.⁵⁴ This meant that as far as all the medico-legal officials involved were concerned Carol Morris had been a person with a family history that gave her a sense of community and belonging – until, that is, in death, she had become a cause célèbre because she wanted to ‘gift’ part of her body as a bequest. Consequently, her lack of agency in death and dwindling material integrity because of becoming a transplant target meant that she became recycled for public consumption: an outcome that her family found painful to come to terms with. They now had a very difficult decision to make about whether they should retreat into private grief or seek public redress from the press for being hounded. Given how much their privacy was breached, few onlookers would have blamed them for closing ranks and never speaking again about the dreadful circumstances of Carol Morris’s donation. Yet, with emotional fortitude, they decided to contact their local member of Parliament and asked him on their behalf to highlight the dreadful experience they had been through as an organ donation family. For, they did not want others to be in the same position of exposure to such intense public censure. And thus, we see how an explicit dispute came to national attention.

Donor Anonymity – A National Issue

On 5 March 1980, the Right Hon. Mr John Farr, MP for Market Harborough in Leicestershire, tabled an early day motion in the House of Commons. He did so on behalf of his constituents the Morris family:

Farr explained that he had ‘cross-party support’ for an amendment to the new Health Services Bill about to come before Parliament. The proposal was to attach to it a revised Code of Practice introduced in 1979, with the support of the BMA, to better regulate the transplant surgery of hearts by making all donations anonymous. There were thus two ways forward, as Farr explained: ‘First, again in order to assist anonymity, could not all the cards of those who wish to remain anonymous have the word “anonymous” printed diagonally in large type across the top? Secondly, in these days when organs of all types are so pressingly needed, could not we have a single donor card for all organs, which would greatly simplify the system?’ Farr had consulted the Secretary of State for Health, who was supportive. There was general agreement that the new procedures would protect families like the Morris’s from such public exposure for an altruistic act at a time of tragedy.

During the early day motion debate, Farr explained to his fellow MPs that the pace of transplant surgery in terms of its new techniques was moving faster than the law in Britain.⁵⁶ So, whilst a Code of Practice for the Organ Donation(s) of kidneys was well known and had been operating efficiently for some time, the surgical ability to do spare-part surgery with hearts had exposed explicit body disputes that would become more contentious. The heart seemed to rouse public sensibilities because of its important cultural symbolism in Western society. It meant that any lack of clarity in the Code of Practice left heart transplant surgeons exposed to media harassment. Families that donated faced a maelstrom of press intrusion too. Yet, the Code’s language was loose when transplant techniques were influx. The press were thus quick to quote any lack of clarity in the wording. It was now important, in Farr’s opinion, to alter the discourse to reflect the changing realities of biotechnology by 1980. This would then ensure that compliance was transparent. He gave an example of how ‘paragraph 37 of the Code’ states that: ‘The staff of hospitals and organ exchange organisations should always try to maintain the anonymity of the donor and of the recipient.’ He reiterated: ‘I do not believe that that goes far enough today. I should like to see a fresh code drawn up.’ If the Code was redrafted in ‘plainer language’ – replacing should with must – this would guarantee anonymity for all involved on both sides of the donation exchange. The time had come to no longer fudge the pressing ‘question of anonymity’. It ought not to be dealt with ‘in a cavalier manner’ of the sort that the Morris family had experienced. In a final gesture that acknowledged the stressful situation his constituents found themselves in, Farr closed his speech by clarifying the current law according to HTA1961: ‘That Act clearly lays down that coroners have the right to require consultation before organs are secured. However, I understand that most organs are obtained after telephone consultation with the coroner, which I believe is a proper and correct procedure, which does not take up very much time.’ This reiterated that although the Leicester coroner was correct in medico-legal terms, others were working their way around the law in practical ways to facilitate transplant surgery. Reforms to working practices would thus ensure the Coronial Office avoided generating explicit body and body parts disputes.

In due course, as Hansard confirms, ‘Mr. John Farr accordingly presented a Bill to provide for protection of the identity of donors of human organs: And the same was read the First time; and ordered to be read a Second time upon Friday 14 March and to be printed. [Bill 160].’⁵⁷ He did so successfully because he had widespread support in the Commons, including amongst the ranks of an influential lobby of leading exponents of transplant surgery:

Of these, Tam Dayell had been one of the most high-profile spokespersons in Britain. He wrote a regular column for the New Scientist in which he often featured the need for more transplants and the lobbying on this issue that he was undertaking in Parliament.⁵⁹ Likewise, Jack Ashley was a lifelong exponent of disability health issues and he promoted the re-enablement of those who could benefit from new medical treatments. All the others had strong local political connections to the East Anglian and Midlands regional areas of the NHS where many of the explicit Coronial disputes were being generated during the 1970s and early 1980s.⁶⁰ Together they thus constituted a powerful faction that could substantiate the unpalatable position of donor families from across the social and political spectrum. As John Farr emphasised, the issue of anonymity was an emotive one because it had real consequences:

‘Evil’ was a strong term to use – too strong for some newspapers editors – and so soon events would prove that anonymity was not necessarily as straightforward as was implied in Parliament; for, there was another side to the Carol Morris controversy that came to light too.

The Controversial Nigel Olney Case

The PC and its media outlets were somewhat stung by the criticism being levelled at them in the Carol Morris case. Indeed, it was clear that the disputed actions of some journalists could lead to a change in the law. This would give donors, and their recipients, anonymity in transplant surgery on a permanent legal basis. If the press were to make a case for more public accountability, then they needed to take a new tack. They soon found a news angle. Reporters were despatched to investigate the personal circumstances of Mr Nigel Olney who had received the ‘gift’ of Carol Morris’s heart. The Guardian newspaper was one of a number of the broad sheets and popular dailies that opened with a report that was positive in its tone. It informed readers that Nigel Olney had been sitting up in his hospital bed at Papworth, and he was recovering well from the heart transplant operation, which took ‘five hours and seven minutes and was led by the South African-born surgeon Mr Terence English’. Then lead articles turned into an exposé:

The unwitting testimony implied in this editorial line was that this was a man with questionable morals by virtue of his pending divorce (allegations of adultery and child custody rights for men were still a sensitive social issue in the 1980s). He was also a convicted fraudster that had benefitted from being in an NHS facility paid for by the same taxpayers he had defrauded in his chiropody work in the community. The Guardian newspaper was nevertheless careful to balance its editorial slant. Interviews were obtained from Mr Olney’s soon-to-be ex-wife, his near-relations, and a Papworth Hospital spokesman about the costs of his operation and aftercare. All stressed that he was a suitable donor recipient. A neighbour of the Olney family in Leighton Buzzard, Mary Campbell, described Nigel: ‘He is a hell of a nice guy. Nobody deserves to live more than he does. He’s been so weak recently he’s had to be carried when he goes out.’ In mitigation, she alleged: ‘I think his illness and his marriage problems would account for some of his other troubles.’ Likewise, Nigel Olney’s separated spouse who had moved to a Hertfordshire village with ‘her two children Jason and Nicole’ told a reporter on her doorstep: ‘I am extremely concerned and hope Nigel makes a steady recovery.’ It was a dignified response from his separated wife in the face of full public exposure. Nigel Olney’s parents similarly ignored the accusations of his unworthiness and stressed instead in a statement to the press: ‘We are most grateful to the hospital for accepting our son and taking such good care of him.’ A Papworth Hospital spokesperson meanwhile explained that recently the transplant team received a charitable grant of £50,000 from the National Heart Research Fund and this money, not NHS resources, was funding the transplant and aftercare required. When pressed, the transplant team estimated that ‘the operation and a year’s aftercare would cost about £15,000’ in each case. In other words, the Carol Morris explicit dispute with a coroner was now being recycled into a much wider set of other body part disputes about the future medical ethics of transplant surgery in a modern world.

It was well known at that time that the NHS had refused to fund such risky surgical procedures as heart transplant. On the one hand, then, the newspaper coverage was being duplicitous in connecting Mr Olney’s fraudulent behaviour to his alleged exploitation of public healthcare funds. On the other hand, the NHS had built Papworth Hospital in the first place from central taxation and so Nigel Olney was technically receiving a benefit in kind by being cared for in that facility. Evidently, the assessment of the case on financial, medical and moral grounds rested entirely with the transplant team and the charity in question. Indeed, the medical team stressed that they examined the best surgical chance for a tissue match and, provided the pathologist on the transplant team found that the immunology looked favourable, it was judged prudent to go ahead. There would have been a sound medical case for the transplant to proceed. It was not, moreover, for transplant surgeons to investigate the moral grounds for proceeding in individual cases. However, this question of the morality of transplant work did not abate, either at the time of the Olney case or subsequently once liver transplants became feasible. Often the media would ask: Should an alcoholic (for instance) receive a liver transplant? It was an ethical question that featured in many high-profile cases such as the ex-footballer George Best, famous for his hedonistic lifestyle and family history of alcoholism.⁶³ Yet, Nigel Olney’s brother in response to the considerable media storm, and the very personal criticisms being levied, reiterated to the Guardian: ‘the family are very distressed that Nigel’s past has been “raked up” when he was still in intensive care’.⁶⁴ In many respects then Nigel Olney was a test case for what would prove to be ongoing ‘moral’ debates surrounding transplants and the anonymity for recipients in Britain and Europe. What Carol Morris’s bereaved family felt when they discovered the personal circumstances and criminal record of Mr Nigel Olney was not recorded publicly at the time in the newspapers; yet, it cannot have been palatable to be part of an ongoing press exposé, even by association, during the first stages of grief.

The balance of the evidence in this symbolic case makes it clear that heart transplant surgery was an emotive issue in the British media – journalists tapped into a long history of the heart being a central and enduring symbol of humanity in histories of the body for many cultures.⁶⁵ Yet, it was also a litmus test for many of the procedures put in place when the Victorian Information State established working arrangements, aspects often neglected in standard historical studies.⁶⁶ Coroners had extensive powers of discretionary justice, and they had worked hard to promote their image as protectors of law and order in the community. As they moved from being legally to medically qualified, and worked alongside pathologists more regularly, it enhanced their professional status. Their individual sense of personal agency increased too. So much so, that by the modern era they had become the fulcrum of advances in forensic medicine and pathology. In an era when medico-legal jurisdiction over the body was to become contentious as researchers inside the medical sciences competed for better access to cadavers and ‘live’ donors (in kidney transplants, for instance), coroners began to clash with those they had co-operated with in the first place to raise their professional status. The Carol Morris case exemplified that trend and soon led to international scrutiny too. In this way, explicit disputes had a global impact.

International Impact

There had been an initial ‘transplant fever’ across the world from 1968. As the Observer reflected there were ‘more than 100 heart transplants by 64 teams in 22 countries. But most of the patients died, succumbed to infection or rejection, the biochemistry of which was not clearly understood, and the fever never faded’.⁶⁷ In the mid-1970s, many thought that the transplant era ‘was over’ because the new technology had ‘left in its wake considerable distaste for the eagerness with which some surgeons had joined the transplant rush’.⁶⁸ An added logistical issue was that governments saw such risky operations as an electoral liability. Few wanted to divert their healthcare budgets to fund the research and development of transplant units, even though survival rates and immunosuppressive drugs had improved by the end of the 1970s. Papworth had raised the profile of heart transplants in Britain, but whether they could sustain their success depended on more funding by medical charities and better management of the attendant media publicity. This is what made the Carol Morris case noteworthy. For, it exemplified that public relations were an intrinsic aspect of the transplantation era whether the medical community liked it or not.

It was in many respects ironic then that those involved in the Carol Morris/Nigel Olney heart swap expressed surprise about the negative coverage after the coroner’s explicit dispute exposed the details of the case to media scrutiny. For, in an interview with Christian Bernard (who carried out the first heart transplant in the world) for Tomorrow’s World televised on the BBC in 1968, the audience of medical experts and church leaders assembled from across Britain kept making repeated criticisms of his team’s ‘mishandling of the media publicity’.⁶⁹ He was asked ‘why he had made available pictures of the donor and his relatives’, and ‘why had he made the personal details of the donor made known to the recipient’ when this was unnecessary? It could be interpreted as a breach of the Hippocratic Oath’s commitment, to maintain patient confidentiality at all times. Bernard defended:

Bernard then threw down a challenge to whoever did become the first heart transplant surgeon in Britain. If they and their team succeeded in controlling, limiting or stopping the publicity of the inevitable media frenzy, then he would, he said, ‘Take my hat off to them!’ The transplant team at Papworth Hospital soon found themselves in an equivalent situation in the early 1980s. Yet, they could have designed a better and more confidential transfer handover process. Precedents in kidney transplants were established, and the controversial South African heart transplant situation meant professional lessons had been publicised. Equally, the Coronial Office could, and sometimes did, countermand new procedures that were put in place because they had the individual discretionary justice to do so in England. Explicit disputes were thus literally ‘the heart of the matter’ in many localities outside of London.

The change in the law that the Carol Morris case created to protect the anonymity of donor families, and by extension their recipients, was to have far-reaching sociocultural consequences, but not necessarily ones that were anticipated at the time. There did appear to be strong ethical grounds for checking media intrusion, especially in Britain where the tabloid press were persistent in pursuit of a newsworthy medical breakthrough. There was also a reasoned medical case put forward that some recipients who knew their donor’s identity did experience psychological pressures, which included feeling guilty about being the beneficiary of someone’s death. Recipients likewise expressed concern about not having the physical energy for any emotional involvement in another family’s trauma. Yet, it is equally apparent that around the world as countries adopted British standards, the sociocultural distance between donor ‘gift’ and recipient got wider and wider as transplant techniques improved. So much so that eventually ‘Red Markets’ have been created in countries like India, as Scott Cairney points out (see Chapter 1), which have facilitated organ ‘vendors’.⁷¹ It is a disturbing irony that anonymity, which was introduced to protect the Morris family and many others like them, also shields unscrupulous body brokers operating as spare-parts traders via the Internet in many of the poorest parts of the world today. This socio-medico reality has recently been the subject of renewed debates in transplant surgery circles about whether to rescind or keep anonymity. Briefly, we consider this outcome of the human stories we have been examining in this first half of the chapter, and which reflects the importance of their wider historical lessons.

In Belgium, politicians debated in 2009 whether better communication should be facilitated between ‘live’ donors (and/or grieving families in cases of sudden death) and their living recipients.⁷² They commissioned studies to test public sentiments. In one leading example, a representative sample was identified of 249 transplant patients, and, of these, 176 people took part in an opinion survey. Some 70 per cent of those participants (n=123) wanted to maintain the status quo for the psychological reasons stated above, namely, the recipient would find it very difficult to cope with any emotional engagement with the donor family. Around 19 per cent (n=11) were keen, however, ‘to obtain some information about their donor’ and would at some point wish to ‘express their gratitude’. Meanwhile about 42 per cent (n=72) of the sample ‘would worry about the donor having a different background to them’, and what differences would mean (there was no suggestion of racism but rather concerns about socio-economic status, class and educational differences) in terms of relating to each other. Nonetheless, 36 per cent (n=55), having considered the survey carefully, thought there probably should be a change in the law to connect people in the ‘gift’ relationship and make it more ethically transparent. Eventually, it was concluded that: ‘Prudence to change the law is warranted, as only a minority of patients are in favour of rescinding the anonymity.’ The matter was tested again in the Netherlands in 2015, and a survey of about the same size and scope (again involving liver donations) came to the conclusion that: ‘There is no need to change the current legislation on anonymity of organ donation.’ However, it also found ‘that most liver transplant recipients would like to receive some general [author’s emphasis] information about their donor’. Therefore, ‘clear guidelines on the sharing of donor data with recipients needs to be established’.⁷³ Moreover, in countries like Israel and the USA, studies have recently been delivering similar messages. Provided transplant co-ordinators take the initiative and facilitate appropriate contact between donor families and recipients in all types of surgical interventions (heart, lungs, kidneys, eyes and liver), then there is a public appetite for promoting more personal interactions, paced properly and sensitively handled.⁷⁴ The Carol Morris case continues hence to be the focus of global ethical debates, even by those who are unaware of how the powers of an explicit body parts dispute by her Leicester City coroner were to change the terms of reference in transplant history for everybody in Europe and beyond. Having therefore engaged with these human stories we now need in Part II of this chapter to evaluate their ingrained historical lessons to reconsider how and with what outcomes the power and palette of the Coronial Office endured for so long. To do this, we need to look in more detail at the systemic flaws in the Coronial system of handling the dead – picking up on themes we have encountered in Chapters 2 and 4 and now expanding on them – namely, the extra time coroners spent with human material, how it was harvested, and in what ways the flawed system of death certification potentially undermined the precious information that could be generated from ‘causes of death’ pathologies to further medical research in the modern era. In other words, the next section is concerned with how micro-stories, reassembled from their dissected remains, have macro-lessons of significant longevity in hidden histories of the dead.

More Extra Time of the Dead

Adverse publicity generated by the Coronial Office was placing anatomists too in a very uncomfortable professional position by the 1980s. In the media, they had been busy promoting body bequests as the ethical way forward since 1954. Few relished being tarnished by the sorts of explicit body disputes happening routinely in organ donation. Practically speaking, however, anatomists had to find a way to continue to work with coroners involved in sensitive explicit disputes to keep up their supply-lines. As a result, most anatomists became evasive and publicity shy when asked about the specifics of their workload, fearful that being honest could undermine their campaign for more body bequests. This atmosphere of public engagement on the one hand and public retreat on the other hand, sometimes created the misimpression that all cadaver work was suspect, when, in fact, anatomists were just being cautious to protect essential supply-lines for better medical education. An added operational difficulty was that in the Thatcher era, all NHS facilities were under intense financial pressures to cut budgets. Staff were being made redundant or leaving voluntarily to train in another career. Hence, the medical research sector started to contract. Often administrators were hit by the first rounds of budget squeezes. As a result, the bureaucratic time it took to process dead body bequests inside the medical school system was elongated. By 1993, it could take up to an extra thirty-one months in some training facilities to get human material signed off officially by the Anatomy Inspectorate at the DHSS. These bureaucratic inefficiencies not only created the potential for discrepancies to occur from time to time but also started to alert the public to paperwork slippages. Those covered in the media created a climate of mistrust by the end of the 1990s when the tide of public opinion turned against the medical research community. To appreciate that context, and how it was to shape debates surrounding HTA2004, it is important to engage with how much extra time with the dead was first created inside the system (as we did in Chapter 4) and then extended (as we will do here).

The way that the system of supply worked was that when a death occurred on the wards of a teaching hospital, it was reported to a coroner. S/he then asked a pathologist to do a post-mortem to rule out medical negligence, as we saw above. If the cause of death was obvious, then the body could be passed on as a bequest, or a body part such as the heart could be retained for future research. This was entirely in the ‘gift’ of the coroner, provided the donor family had been consulted beforehand. That then opened up the possibility for dissection. Provided there was no reason not to go ahead, a medical school would receive a bequest body in the usual way. For up to two years, medical students would train on the corpse. Once this had finished, the human remains went for ‘disposal’, generally by cremation authorised by the anatomist on duty (see Chapter 2). All of the paperwork so far inside this system of supply looked straightforward, until, that is, one examines the official returns to the Anatomy Inspectorate for the 1990s. These reveal minor but important paperwork discrepancies.

In a significant number of cases, the signing-off certificate that should have been issued at the time of cremation was delayed – sometimes for up to another three years post-cremation. Grieving families generally assumed that at cremation, ‘disposal’ was certified and then the case closed as signed off by the dissection team, but this was not always the case. The coroner, for example, could delay issuing a final sign-off certificate if body parts, human tissue or cell-lines had been retained for ‘further consideration’. Hence, these were not cremated with the residual corpse after dissection, a situation exposed during the NHS organ retention scandals in 1999. The absence of a final signing-off notification was in fact ample proof that parts and pieces of the corpse might be used to push past a deadline. The anatomy auditors either did not notice this discrepancy on the part of pathologists (who kept the retentions), or by convention chose to ignore what was not their business. Either way, the system of supply did not operate in such a way that officials could easily take an overview of all the discrete research steps involved, reiterating the autonomy and discretionary power that has often featured in this book. The power and palette of the coroner was pivotal to this system of retention and recycling.

A further complication is that even though most anatomists worked within the law according to HTA1984 (keeping detailed records and ensuring that bodies were signed off locally before cremation to complete paper trails), the DHSS centrally was not necessarily following suit. Serious underfunding of the Anatomy Inspectorate during the Thatcher era meant that if for any reason paperwork related to a dead body that then went for cremation got held up inside the reporting system (the local sending in returns to central control that got delayed), it could remain in an overworked official’s in-tray (now that staffing had shrunk) and not signed off centrally, sometimes for as long as three years. Under normal circumstances, this would not have mattered. After all, it was an internal procedure. The body in question had finished being dissected and was cremated properly with an appropriate ceremony. Yet, it also left open the opportunity for future criticism of anatomists that they were not in full control of their internal audit mechanisms: facets of their working-life that would be closely scrutinised in the run-up to the HTA2004. Anatomists also kept little track of Coronial material designated for ‘further consideration’ that might involve more research study for an extended time period. Several cases are illustrative of this sort of routine gap in the record-keeping.

An elderly man aged 85 died of a stroke on 22 March 1993. His body went to King’s College medical school. This was done with the co-operation of the Coronial Office on 25 March 1993.⁷⁵ The original cadaver was then sent for ‘disposal by cremation on 23 May 1994 to the South London Crematorium’. Thus, it underwent dissection study for 14 months in total. The final signing-off certificate was not, however, issued by the Anatomy Inspectorate, centrally (having been originally countersigned locally by King’s College anatomy department) until 12 December 1996, another 2 years and 5 months post-cremation. Whether this involved the ‘further consideration’ of any human material taken from the Coronial supply-chain was not disclosed or recorded. Similarly, when a female aged 75 died of ‘MI [myocardial infraction, a heart attack due to lack of blood flow] on 3 January 1993’, with the co-operation of a hospital coroner, she was passed over to St George’s Hospital medical school for dissection on 7 January 1993. That is, once the pathology had been done on her defective heart over 5 days, the original body shell was then dissected until 6 October 1993 before being ‘disposed of by cremation’, again at South London Crematorium. Once more, however, the signing-off certificate was delayed, not issued in this case until 12 November 1996, another 3 years and 1 month post-cremation. In terms of the complete paperwork trail, this body looked like it had been retained for a total of 3 years and 11 months, whole and in part(s). Again, whether this covered human bio-commons taken for ‘extra consideration’ is not clear.

The anatomical sciences, without anticipating how public perceptions might view this bureaucratic slippage, were leaving themselves wide open to future criticism that they had lost sight of a series of all their discrete research steps, when in fact it was the central authority that was letting them down. It was unfortunate that systemic flaws in the bureaucratic system for signing off the dead (the result of understaffing problems) made it look like what was happening was that hidden histories of the body were designed to deliberately flout HTA1984. Generally, they were not, but the gap between the public rhetoric denying systemic problems (everything is fine and functioning well – the official DHSS line) and the reality of financial constraints (constant financial cuts, and corners cut in paperwork by exhausted personnel) was never properly explained to the general public to protect the supply-lines of anatomists from coroners. As a result, when we look at the official figures from this time period, they look odd. It appears that anatomists were spending more extra time with the dead than may always in fact have been the case. Figure 5.1 illustrates this common situation by using the example of UMDS medical school (one of the biggest in London, combining anatomical, medical teaching and dentistry training) which first featured in Chapter 4. A sample year of 1993 has been chosen to illustrate trends in the time lag of signing-off procedures. However, although these figures show that the creation of this extra time of the dead was not the fault of those working in individual medical schools, it does raise the question: Did these time lapses created by the central authority become something that later those that wanted to keep hold of more human material for ‘extra consideration’ took advantage of? In other words, did the systemic flaws in the system of processing the dead, after Coronial, pathological and anatomical work, create the canvas on which explicit body disputes were to be played out? To answer this question, we need to delve deeper into the archive material.

Returning to the large anatomy data-set of national trends that underpinned Chapter 4 (data displayed in Figures 4.6 and 4.7, and Table 4.3), it would appear that from 1993 onwards it became normal to delay the sign-off of human material post-dissection.⁷⁶ This happened as a matter of course not just at leading London medical schools, like King’s College, St. George’s and UMDS, but also at Bristol, Manchester and Liverpool medical schools too. Consequently, in the record-keeping one can observe the broad contours of what would become the prime locations of NHS organ, heart and human tissue scandals, some seven years before they came to public attention. Thus (by way of example), there were 55 bodies in the 1993 teaching cycle in which ‘extra time’ was created after initial cremation. Again Figure 5.1 focusses on 30 of those 55 bodies donated to UMDS, since it illustrates the typical time frames of retentions that may have involved more recycling of material. Altogether the human material was not officially signed off for 3 years and 10 months, even though the corpses supplied from Coronial officers were cremated after 1.5 years. In other words, in cases that were potentially already explicit disputes inside the system of processing for teaching and research purposes, there is an extra time of the dead of 2 years and 4 months which is unaccounted for. It might be a bureaucratic slippage as a result of financial factors constraining less staff to sign off the paperwork centrally, or we could be viewing a process of ‘extra consideration’. We will probably never know which because the archival record is so patchy, but nonetheless we are glimpsing a hidden history of the dead arising out of explicit disputes, and one of some longevity. Today this is no longer legal, as Figure 5.2 explains.

Figure 5.1

Coronial donated human remains (bodies and body parts, human tissue and organs) supplied to, but not officially signed off on behalf of, UMDS medical school, 1993.

Source: National Archives, JA 3/1, Anatomy Office, Data-Set Returns for England, c. 1992–98

Figure 5.2

The official procedures for donation to a medical school anatomy department under the Human Tissue Act 2004.

Source: National Archives, JA 3/1, Anatomy Office, Data-Set Returns for England, c. 1992–98

Any attempt (intended or by default) to elongate the authorised paperwork trail that processes the donated dead is no longer permissible under HTA2004. As Figure 5.2 shows, the maximum retention period is three years for the body, though generally most are cremated after two. Significantly, no more than one third of the donation bequest is used for ‘teaching and/or further examination’. This code of practice is to guarantee human dignity in the dissection room. Provided, however, that the donor and their relatives have agreed to it, body parts can be subject to a bequest for ‘an undetermined’ period. This must nonetheless have been the result of fully informed consent. In other words, there is still an ‘extra time of the dead’ inside the system, but it is now a transparent process rather than a covert one. Altogether the old system of ‘extra consideration’ that we saw in Figure 5.1 has now been outlawed by the new system of ‘an undetermined period’ with fully informed consent in Figure 5.2. This means that the explicit disputes of the past have now been redressed, but before we leave behind that context we need to pause and appreciate what all this extra time with the dead (intended and unintended) meant. Thomas Laqueur writes: ‘Death in culture takes time because it takes time for the rent in the social fabric to be rewoven and for the dead to do their work in creating, recreating, representing, or disrupting the social order of which they had been a part.’⁷⁷ We can only know this, however, in terms of how medical research recycles the dead by first finding and mapping material fates found in the death certification processes of dissection, its pathologies and the performance of actor networks. If we are to follow explicit disputes from human story to advancement in medical science, then we need to also ask two related research questions in the final stages of this fifth chapter. If Coronial remains were pivotal for anatomical teaching and practice, the expansion of pathology and forensic medicine, as well as more wider research cultures, what role did their death certification process play in improving public health in Britain after WWII? In this way, were body disputes the bedrock of better medicine for everybody, and did this justify their bio-commons?

Coronial Necropsies – Missed Opportunities and Their Public Health Costs

In the early 1980s, the National Patient Safety Agency (hereafter NPSA) commissioned a series of annual reports paid for by medical charity funding under the auspices of the National Confidential Enquiry into Patient Outcome and Death (referred to from now on as the NCEPOD), which we touched on in the introduction to this chapter.⁷⁸ The aim of the initiative was threefold: first, to better understand why patients died in large medical facilities, such as NHS teaching hospitals. Second, to ascertain what Coronial reports indicated about ‘real’ causes of death on a national, regional and local basis in order to improve healthcare standards. Third, to identify whether pathologists could help improve autopsy reports and assist with auditing perioperative deaths. Professional bodies like the Association of Anaesthetists and Surgeons and the Royal College of Pathologists and the Coroners’ Society agreed to co-operate with the NCEPOD to try to improve best practice. It was, however, the NCEPOD report for 1990 that would cause the most controversy by identifying that with respect to autopsy reports, ‘communications between pathologists’ (whether working in hospitals or with coroners) ‘and clinicians is so poor that useful lessons cannot often be learnt’. As a result, a Joint Working Party of the Royal Colleges convened in 1991. It recommended that there should be a more ‘systematic monitoring of the discrepancy rates between ante-mortem [patients’ health profiles] and post-mortem diagnoses’, with this vital clinical information being made ‘more widely available to consultants’.⁷⁹ In other words, there was a recognition that explicit body disputes existed, they were generated by Coronial cases, and yet, not enough was being done to learn from them. Cases that attracted a lot of adverse publicity had therefore no balancing mechanism of a public gain for the medical scientific community. Bio-commons was not necessarily beneficial for everybody.

Further complicating this common situation was that central government defended its position about a lack of public health gains by pointing to better clinical audit procedures that were enshrined into the National Health Service and Community Care Act (Eliz. 2 c. 19: 1990). That new legislation had created self-governing NHS trusts, as well as GP fund-holding practices. They were now responsible for managing healthcare and welfare services in the community, including their financing.⁸⁰ This was creating serious resource issues for the Coronial Office, with central government finance re-diverted to NHS frontline need. With less in local budgets for coroners and pathologists to spend, fewer healthcare lessons were passed on. The situation was a missed opportunity cost. It was becoming unaffordable for the dead to improve medical outcomes for the living. There thus remained uncertainty inside the reorganised NHS system as to whether autopsy results were in reality informing clinical practice or not, with many practitioners sceptical that they did so.⁸¹ Against this backdrop, the fact that autopsy rates declined significantly between the 1990s and the passing of HTA2004 appeared to be a worrying trend. Consequently, the NCEPOD in 2006 undertook a new investigation styled: ‘The Coroner’s Autopsy: Do we deserve better?’ Its ramifications were to be far-reaching.

The NCEPOD 2006 audit highlighted that the Broderick Report (1971)⁸² and the Lucre Report (2003)⁸³ had both indicated that there were persistent problems with autopsy reporting procedures across the United Kingdom. It remained the case that as late as 2006 there was ‘no single body or department that oversees death certification and coroners’. Exacerbating this situation was the fact that ‘the service is part local and part national’. Although most pathologists worked for the NHS, ‘coroners are appointed by the Lord Chief Justice and come under the Department of Constitutional Affairs’. So even when a coroner and pathologist worked side by side, each had a different reporting mechanism, as well as different systems of audit and accountability. In addition, the Registrars of Death responsible for monitoring the accuracy of death certificates remained the responsibility of ‘the Office for National Statistics … under the aegis of Her Majesty’s Treasury’. The NCEPOD thus concluded: ‘There is no centralisation or unification of responsibility and accountability’ involving the Coronial Office. As a result, potentially many sorts of body disputes were being generated by a lack of communication, sporadic co-ordination, and ad hoc customary practices in Coronial autopsies, even post-HTA2004. They hence asked a pressing question: ‘What level of quality in the Coronial autopsy service does the public want?’ Answering this conundrum proved to be provocative because there was a mismatch between public perceptions and actual Coronial working practices of some longevity.

NCEPOD 2006 set out that there was a historical problem with the basic cost of autopsies to the taxpayer – a controversy stretching back to the 1830s – which had never been resolved.⁸⁴ It had continually undermined the official reach of the Coronial Office in England and Wales. The public expected a high standard of service and coroners to be accountable, but such aspirations did not match adequate funding allocations. As NCEPOD pointed out, ‘when considering the variable quality of the current autopsy process, several pathologists and coroners commented: What do you expect for £87.70 [the current fee for a standard autopsy without further investigations]?’ Low fees meant spending no more than thirty minutes on an autopsy. Coroners paid pathologists to do their pathology work but had to factor in the opportunity costs associated with budget shortfalls. This had given rise to what this book calls a system of presumptions. That is, over time the public made assumptions about coroner/pathologist working relationships that did not match realities. For instance, most coroners on cost grounds continued to tolerate a certain level of amateurish procedures due to underfunding. Many autopsies had the official appearance of a forensic examination, but they are nothing of the sort, as the standard modus operandi of a detailed ‘post-mortem’ remained undefined in law. Consequently, the NCEPOD found that there were significant levels of misinformation inside the autopsy system, exacerbating a lack of clinical clarity. Very basic and routine mistakes happened a lot because of poor or illegible handwriting on rushed reports written hastily by coroners and pathologists. It was impossible to engage with autopsy outcomes because they were often indecipherable. In a digital age, this was unquestionably outdated and represented an opportunity cost for researchers to better engage with both the demographic and geographical subtleties of mortality rates in community medicine. Against this backdrop, the NCEPOD report in 2006 became the focus of a national debate about the future of the Coronial Office.

In 2005–6, the NCEPOD audited 114,600 autopsies (some 22 per cent of a total of 513,000 deaths that year) in which the Coronial Office was involved in England and Wales. In terms of those demographics, one headline announcement that was to shape media reaction was that ‘the advisors had concerns over the quality of autopsy examinations in the very elderly’. They concluded that ‘these were done less carefully than those on younger patients’. In an ageing population, this was a noteworthy trend, especially since anatomy teaching and research were reliant on the gerontology of necropsy bequests. There was little joined-up thinking between coroners/pathologists/anatomists of the sort that had characterised the Victorian era. A summary of the audit study also observed how:

Since WWII, it ought to have been the case that Coronial necropsies were a potential ‘treasure trove of information’ (as this chapter argued earlier). Instead, ‘real causes of death’ remained ‘hidden because of indifferent post-mortem examinations’. Done hastily, they were often ‘obscured by deficient recording of data’. Such basic flaws had not been resolved for over fifty years.⁸⁶ It was thus self-evident to many inside the profession why disputed bodies came about from the 1960s to the 1990s. As one coroner described it: ‘The system is confused chaos [run] more by default than by design.’ Hidden histories of the dead thus mattered and still matter for the living. For every explicit dispute, there needed to be a much better public health gain. Central government’s solution was to launch an inquiry into the power and palette of the Coronial Office, but this soon proved to be controversial too.

Around 2006, after the NCEPOD report was published, the media turned their attention to a central government proposal to create a new Chief Coroner for England and Wales. Extensive newspaper coverage debated whether this was justified on costs grounds or not. Central government proposed that the person appointed to the new role must get rid of a lot of wasteful bureaucracy and instigate a reformed system. Only this approach, it was argued, would begin to counteract explicit body disputes and the lack of public health gains: the latter was occurring on a regular basis. Everyone agreed with the NCEPOD main findings. Public health schemes should be better informed by Coronial statistics in a biomedical era. Yet, how this was to be counterbalanced with the desire to strengthen the impact of the Inquest process was unclear. What complicated the contemporary debates was that a global recession occurred in 2007. It would require a large budget to set up a new Chief Coroner’s Office at a time of severe government cutbacks. Exacerbating this budget issue was that after the Coroners and Justice Act (Eliz. 2 c. 25: 2009), there was an expectation that the new legislation would overhaul a Coronial system with three inherent structural problems. First, there needed to be unambiguous leadership at the top of the Coronial service to direct future policy making. This strategic focus should be in line with central government thinking and reflect the range of stakeholders that coroners had to work with on a regular basis, including the public, pathologists and the police. Second, there had to be a better system of public accountability that would involve streamlining diverse local working practices so that these were co-ordinated around strategic priorities to improve the Coronial service overall. Third, the devolution of funding and its historical discrepancies had to be rectified. What then complicated this tripartite juggling act was a political commitment in the new Bill. It promised to uphold a new Charter for the Bereaved, which ‘set out a range of service standards and consumer rights’.⁸⁷ The general public wanted more medical information, better consultation and improved communication channels, with the option to appeal against a coroner’s verdict when, for example, ‘viewing a body’ or attending an Inquest.

In considering this insider/outsider set of stakeholders and their different perspectives, Alexander Pitman was one of a number of expert commentators who highlighted the inherent flaw with central government’s public engagement aspirations. He told the press, ‘The possibility remained that the Charter might raise expectations beyond the capabilities of the service, offering bereaved people a list of laudable but unenforceable empty promises [sic].’ The latter was discussed at length during the second reading of the Bill.⁸⁸ In other words, the question of how to bridge rhetoric (legislation) versus reality (working styles) was a significant Coronial hurdle. As a result, a three-year consultation process began against the backdrop of the global financial crisis.⁸⁹ The Coalition government (2010–15) threatened to cancel the new office of Chief Coroner to help meet the budget deficit, but then did another volte-face when confronted with concerted opposition by Parliaments’ Public Administration Select Committee, influential pressure groups such as INQUEST and the House of Lords. After much political wrangling, the new Chief Coroner, appointed from the judicial circuit, was told to prioritise cost analysis right from the start of taking up office in July 2013. Reviewing the subsequent annual returns of the reformed Coronial Office is instructive about how exactly the new changes would redress explicit body disputes, improve public health gains from Inquest information and streamline procedures that were still ad hoc in the regions. The simple answer is that this was an impossible task. Findings explain the longevity of ingrained problems with the power and palette of Coronial Office responsibilities, as we approach the conclusion to this chapter.

The Coroners’ Statistics Annual Report for England and Wales is issued in May each year as a Ministry of Justice bulletin. It is the main legal instrument by which leadership, accountability and devolved budgets of the Chief Coroner are measured. These three facets of the working portfolios of all Coronial offices also feed into the Office for National Statistics mortality figures. In 2015 some

In terms of post-mortems, some ‘89,206’ were ordered by coroners, or ‘38% of all cases reported to them’. That said, not all post-mortems required that an Inquest come to court. Some are now ‘a paper inquest’ – a process that used to be known as a ‘non-Jury’ inquest in the past. In fact, since ‘1995, the proportion of post-mortem inquests has decreased by 23 percentage points, from 61% to 38%’. Examining those statistics in Figure 5.3, it is evident that there had been a decline in post-mortem work (broadly defined) after the mid-1990s, from 126,398 cases in 1995 to 119,610 by 2003. Yet after the passing of HTA2004, there was a further falling off of post-mortem work, with a downward trend of about 5,000 Coronial cases in every biennial accounting cycle. Chapter 6 will be exploring the impact of these trends on the work of pathologists, too. Meantime, the overall picture of post-mortems from 2011 to 2015 now has stabilised, with 95 per cent of all coroners’ cases requiring a standard post-mortem.⁹¹ Generally, 20 per cent required histology and 14 per cent toxicology (to ascertain class A drug or alcohol abuse, as well as poison from a drug overdose in cases of suicide). These are therefore the remaining potential explicit body disputes still in the system, though many have now been modified by the HTA2004’s fully informed consent provisions. It remains, however, to be seen whether public health measures will improve because the system is still not uniform, remains underfunded and still operates by a considerable amount of discretionary justice: we conclude by reflecting on these historical observations of some longevity from Part I (human stories of explicit disputes) and Part II (their creation by the Coronial Office) of this chapter.

Figure 5.3

Number of post-mortems held on behalf of coroners in England and Wales, 1995–2015.

Source: https://www.gov.uk/government/statistics/coroners-statistics-2015, accessed 31/03/2015

Medical Death’s Dead-End?

In April 2016, National Geographic opened with a lead article that posed a thought-provoking medical question: ‘Is Science Redefining the Boundaries of Life and Death?’.¹⁵ The answer was a resounding yes, thanks to new, sophisticated technology. An investigative journalist explained that once society accepted that death was a physical set of processes (based on a growing body of empirical evidence in emergency room medicine), the boundaries of when that occurred in medico-scientific parlance were always going to shift. This new status quo had prompted a Harvard University panel of experts in 1968 to look at the two ways death had been defined since the eighteenth century: ‘the traditional way, by cardiopulmonary criteria, and a new way, by neurological ones’.¹⁶ Their conclusions led to a new recognition that death in the brain mattered just as much as death in the heart and lungs. Evidence showed how, unaided and without extra oxygen, the brain could still survive for about three minutes even after the heart had stopped and the lungs had ceased to inflate. Consequently, ‘brain death’ in medico-legal circles now had ‘three cardinal benchmarks’. These included: ‘coma or unresponsiveness, apnea or the inability to breath without a ventilator, and the absence of brainstem reflexes’; these have tended to be ‘measured by bedside exams such as flushing the ears with cold water to see if the eyes move, poking the nail bed to see if the face grimaces, or swabbing the throat and suctioning the bronchia to try to stimulate a cough’. Therefore, death acts like a dimmer switch in the body; it can be turned down in trauma, but that does not mean that the light of life has expired in the brain or vital organs. Quoting Dr Sam Parnia (who opened this section), the article observed:

Yet, the interesting thing about this storyline was the reaction to the online newsfeed by regular readers of National Geographic. Some subscribers blogged that they thought the evidence presented of a number of cases in which patients had been brought back from the dead many hours after they seemed to expire in the emergency room was disturbing. Others dismissed the notion of a Near-Death Experience (hereafter NDE) calling it pseudo-science. Many more believed that this NDE grey zone proved life after death existed in some form and thus validated how many people had a spiritual faith in the global community. Few, however, expressed an opinion about the reporting of the history of resuscitation and whether ‘the facts’ as presented in the article were reliable or not. Although the reportage did not intend to mislead, it did not cover just what a long and disruptive issue medical death has been in the history of anatomy: an important context for this chapter’s central focus on the role that medical death and brain research would play in creating missed disputes by the turn of the twenty-first century.

Recently, historical scholarship has established that English penal surgeons had been very troubled by when to call medical death since at least the mid-eighteenth century. As this author has argued extensively elsewhere, those medical men who were given the task of dissecting criminals convicted and hanged for murder on the gallows under the Murder Act (25 Geo. 2. c. 37: 1752) found that in the winter, cold corpses that should have been dead could be revived when cut down from the hangman’s rope.¹⁸ Hypothermia in the body protected the brain, heart and lungs from expiring, and when warmed up the deceased began to wake up in the dissection theatre. Since they were socially dead (having committed homicide), legally dead (being condemned in court and hanged in public) but not medically dead (still having life signs in the body), the only solution was to transport the convict for life to the Americas or Australia. Somewhere today there are the ancestors of condemned criminals who are living proof that the boundaries of life and death have always been fluid. This unforeseen outcome seldom features in standard historical accounts, so it is perhaps unsurprising that such findings have not informed modern debates concerning when death really occurs. In other words, from the eighteenth to the twentieth century medicine behind closed doors knew about the complexities of ‘calling the time of death’. Indeed, one physical factor that eighteenth-century surgeons encountered regularly, which twenty-first-century consultants in emergency medicine know to be a physical fact, is that to keep the brain-stem alive, effective oxygenation of the bloodstream must be sustained in trauma. It is best to start oxygenating the blood at the point of injury, even before ambulance transfer. This is because biomedicine really does work best when it is as easy as breathing. That discovery has complicated today when exactly to call the time of death. For traditionally doctors used to call the time of death at twenty minutes in emergency rooms around the world. That was when they accepted the flatline of the heart as proof of medical death. There seemed little point in continuing to do compressions or jolt the heart with an electrical stimulus beyond the twenty-minute marker if the brain was beyond repair. The person in trauma would be in a vegetative state, functioning on a heart-lung machine but not capable of an independent quality of life. This customary practice, however, started to run counter to the new capabilities of medical technology. From the 1980s, it was feasible to monitor even the very faintest traces of life in the brain-stem. Sophisticated equipment began therefore to elongate the timing of medical death. In resuscitation medicine, the twenty-minute marker looked outdated. Thus, in the recent past, saving a life involved oxygenating the brain-stem and reviving patients thought dead. This discovery has redrawn the fine line we all will cross one day into our individual deadlines. In other words, by the 1960s research facilities around the world reliant on brain material to advance neuroscience now faced new practicalities, and medical ethics had to respond in kind.

In 1968 (as we have seen) invited scientists, anaesthesiologists and experts working at the forefront of emergency medicine, as well as leading ethicists and a medical historian, convened at Harvard University. They styled themselves the Ad-Hoc Committee on Brain Death (hereafter AHCBD) and assembled at Harvard Medical School. Their remit was to review and make new policy recommendations concerning the changing ethics of ‘irreversible coma’ and shifting medico-legal definitions in a biotech world.¹⁹ The AHCBD concluded that in a non-functioning brain, permanent death needed a clinical description of ‘brain death’, re-defined in three diagnostic ways:

However, because there was also a considerable weight of medical evidence that some bodies in hypothermia or after drug intoxication could sometimes be revived in the brain-stem and still had a beating heart, a fourth checking mechanism was required, too. Each patient had to have an electroencephalogram (EEG) and two experts in resuscitation medicine to check the reading. They had to agree that the person was deceased and could potentially be part of an organ donation scheme, provided, that is, they met the new medico-legal protocol steps 1–3 plus EEG. A patient was only then essentially ‘brain dead’ and this diagnosis defined their end of life, rather than a non-beating heart. The hope was that this new diagnostic tool would separate out ‘brain dead’ patients from those in a ‘persistent vegetative state’: the latter can still physically experience cycles of sleep and wakefulness despite being in a deep unconscious state.²¹ A priority was to protect transplant surgeons against accusations of killing patients during technical procedures when the heart had to be stopped to be transferred to a donor or a kidney was taken from a so-called ‘living cadaver’ on life support until the transplant was complete. In medico-legal circles ever since, the AHCBD meeting became renowned as a landmark ethical event.²² It also stimulated considerable controversy.²³

From the outset, critics observed the close links between the AHCBD report and organ donation schemes in Intensive Care Units (hereafter ICUs). Collected evidence from around the medical world seemed to indicate that the majority of ‘brain dead’ patients became ‘solid organ’ donors (heart, lungs, kidneys and liver). Harvesting of on average four donations per dead donor soon became the norm. Other ‘donors’ became ‘tissue transplants’ (eyes, bone grafts and general human material). Sceptics questioned therefore the degree to which ‘the dead donor rule’ was ethical. Did it effectively drive up donation rates? It looked like those involved in transplantation actor networks could have been motivated to improve biotechnology, rather than promoting medical altruism (in that order of priority). For this reason, the AHCBD report, whilst influential, did not create a global medical consensus about an agreed precise timing of ‘brain death’. Consequently, the US government convened a President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research in 1981. The aim was to look again at patients who seemed to be ‘beyond coma’. This diagnostic emphasis stressed that it was ethical to explore when the ‘whole of life’ appeared to have ended in a patient in deep trauma. As Margaret Hayden, bioethicist, explains: ‘The report’s other reason for this new definition was equally pragmatic, stating that patients in irreversible comas (with beating hearts but irreversible brain damage) could place an undue burden on families and hospitals.’²⁴ The review group hence concluded that the holistic essence of life is in the brain. Hayden elaborates that in 1981 the President’s Commission drew ‘on both biological and philosophical premises’ concluding that:

In other words, brain research and advances in emergency medicine were dealing with a new reality – death’s door stayed open for longer than many skilled medics cared to admit in public – and on its threshold were the living-dead which required new protocols. Soon, the 1981 President’s Commission findings were being enacted across America.

Forty-five US states adopted a definition of ‘total brain failure’ under new legislation known as the Uniform Determination of Death Act (1981) (hereafter UDDA). Again, however, critics like Hayden point out: ‘Much of the clinical guidance is designed to mitigate and mask the ambiguity between what a brain dead individual looks like (well-perfused, warm skin, with a beating heart) and how we expect a dead body to appear (grey, “lifeless,” with no heartbeat or pulse).’²⁶ Often ICU staff reported on families feeling upset and confused about being informed their relative was ‘technically alive’ and not knowing what exactly this meant clinically. Thus, the UDDA had provided a useful working-protocol, but families trusted their instincts too and this led to a cultural stand-off, sometimes culminating in body disputes. What further complicated the separation of life from death by the Millennium were new clinical findings highlighted by Dr Caroline M. Quill, the lead author of a disquieting study into ICU practices across the USA. These were co-ordinated by the Pearlman School of Medicine at the University of Pennsylvania. As NBC News explained in May 2013: ‘If you land in an intensive care unit sick enough for doctors to consider withdrawing life support, be warned – Whether and when to pull the plug may depend in large part on the practices and culture of the ICU itself …’

Dr Douglas White, an Associate Professor of Critical Care Medicine and Director of the Ethics of Critical Illness at the University of Pittsburgh, likewise pointed out that often ‘decisions about whether and when to withdraw support are not scientific ones’. Hence, patients should be encouraged to talk much more openly about what they would want to happen in a critical situation at the end of life and leave a legal will stating their healthcare wishes. Yet, many in the recent past felt unable to do so; others put off the inevitable, or hoped their families would take over, often with mixed results, as an anonymous nurse working in ICU explained to NBC News:

Even so, a further complicating factor was advances in emergency medicine during the same period.

In April 2013, Sam Parnia expanded on his hands-on experiences of medical death. In The Lazarus Effect, he wrote about how after training in resuscitation medicine at Guy’s and St. Thomas’ hospitals in London and then becoming head of ICU at Stony Brook University Hospital in New York, he observed that:

In other words, the culture of ICU functioned with an out-of-date historical concept of life and death: as Parnia explained at the start of this chapter’s Part I. Such basic findings reflect how much medicine has been about looking forward, not back: criticisms which echo those of George Steiner discussed in the Introduction. He highlighted that science’s methodologies have a fundamental flaw. Discarding ‘old knowledge’ happens routinely with each new medical breakthrough. By contrast, the medical humanities seldom casts off accumulated human experiences or their arts forms, recognising instead that the potential remains for the revival of old ways of thinking in a future context.³⁰ Kwame Anthony Appiah (philosopher, cultural theorist and novelist) said the same thing during the recent Reith Lectures for the BBC. He observed once more: ‘Although our ancestors are powerful in shaping our attitudes to the past’ and we need to always be mindful of this, we equally ‘should always be in active dialogue with the past’ to stay engaged with what we have done and why.³¹ In many respects, mapping hidden histories of the body is an important way to reveal the flaws in medico-scientific methodologies, as this book and others by this author have done for the first time.³² They reiterate that an eighteenth-century surgeon and his twenty-first-century equivalent in ICU face the same ethical dilemmas. It is not therefore the case that ICU has been too respectful of historical concepts of life/death, as many claim today in resuscitation medicine and standard historical studies.³³ What has really happened is that ICU never engaged with its own past practices. They thus lost sight of the working protocols of their surgical predecessors dissecting in the Georgian period. Eighteenth-century criminal surgeons first discovered the extraordinary capacity for resuscitation in the brain, even after it sounded like the heart had stopped beating in the chest cavity of a hanged criminal. Sam Parnia has therefore returned to old medical questions with renewed biomedical capabilities. In so doing, he alerts us to two important factors on missed body disputes of the modern period – that the brain was the frontier of medical research and that we know less than we should have done of its harvesting networks. To appreciate the importance of this context for our human stories later, it is important to reflect briefly on the dominance of neuroscience in our biomedical world.

Brainstorming Neuroscience

Few scientists would disagree with Professor Colin Blakemore that brain research has become the medical frontier in a biomedical age across the global community, and a timely one. As the Brain Research Trust highlighted in 2016, ‘over 12.5 million are affected by neurological conditions in the UK (that’s one in five)’.³⁵ The medical charity’s online promotional video explains that: ‘the brain is the most complex organ in our body – it weighs just 3 pounds – yet it controls our emotions, senses, and actions – it’s how we process the world around us – so when it breaks down, we break down’. In a similar refrain, Carl Zimmer explained how in 2014 he surveyed the most innovative brain research for National Geographic across America:

In many respects, new digital technology entrepreneurs and their personal computer revolution have also been leading the way globally, too. One such is the late Paul G. Allen, co-founder of Microsoft with Bill Gates. He created the Allen Institute for Brain Research in 2003 with a philanthropic donation of $100 million. Subsequently, Allen donated another $400 million to ensure that brain research remains an ‘Open Science’. His window-on-the-world legacy is a data portal known as the Allen Brain Atlas – ‘part of a 10-year plan launched in March 2012 to understand the neural code—how activity in the brain’s cortex leads to perception, decision making, and ultimately action’. His foundation thus promises: ‘We will be focusing our understanding through simultaneous study of the brain’s components, computation and cognition.’³⁷ Allen, before his untimely death (he died of septic shock related to a terminal cancer diagnosis), was the personification of an Idea Man (the fitting title of his 2012 memoir), for he has taken up the anatomical legacy of the past and pushed it forward into a neurological future he often described in his public speeches as ‘What if’. It is a motto penal surgeons working on the dark science of the brain were once very familiar with in the past, too. They punished the ‘dangerous dead’ in popular culture and found that around 25 per cent of criminals hanged came back to life on the dissection table across England between 1752 and 1832.³⁸ Continually, the boundaries of life and death shifted in the anatomy theatre. They proved to be more fluid than conventional European science traditionally thought over the next two centuries. So much so, that with the advent of biotechnology and the rise of neuroscience, the boundaries of life and death came into even sharper clinical and research focus, revealing differential power relations depending on claims of scientific expertise. And even though this remarkable work on the brain looked like it was robust, this was not necessarily the case. One example stands in for many at the time, and it explains why the general public started to become more sceptical about missed body disputes involving brain retentions once they came to public attention in modern Britain.

On 6 July 2016, Forbes magazine asked its readers to think the unthinkable – ‘Could Brain Research from the Past 15 years Really Be Wrong?’ The lead article, penned by Bruce Lee (Assistant Professor of International Health at Johns Hopkins University Bloomberg School of Public Health) highlighted how three researchers from Linköping University in Sweden had published a startling neurological study in the Journal of the Proceedings of the National Academy of Sciences of the United States of America.³⁹ It explored the use of Functional Magnetic Resonance Imaging (fMRI) in brain research. This was a twenty-five-year old piece of technology and surprisingly few researchers have ever asked: Does it actually work properly, and have its research results been reliable? Essentially, the Swedish research team found a flaw in the operation of software used to detect brain activity, tracked under fMRI scans. As Lee explained:

Soon Lee’s article made medical news around the world because as he asked: ‘Why wasn’t this software glitch caught earlier?’ There were ‘Several Reasons’, he explained –

In other words, in brain studies leading researchers had taken their own working histories for granted. Science Alert likewise highlighted that although scientists thought they were measuring brain function using fMRI, what they had really been doing was interpreting data produced by a machine, not the actual human brain. In other words, ‘Software, rather than humans … scans the voxels looking for clusters [of brain activity]. …When you see a claim that “Scientists know when you’re about to move an arm: these images prove it,” they’re interpreting what they’re told by the statistical software’ – an important data distinction.⁴²

The particular computer software bug that the Swedish study identified was located and repaired in May 2015. Even so, it had skewed the results in some 40,000 published papers since the 1970s. As the Swedish team explained: ‘One of the biggest obstacles has been the astronomical cost of using these [fMRI] machines – around US$600 per hour’. Thus, ‘studies have been limited to very small sample sizes of up to 30 or so participants, and very few organisations have the funds to run repeat experiments to see if they can replicate the results.’⁴³ An added problem had been ‘that because software is the thing that’s actually interpreting the data from the fMRI scans, your results are only as good as your computer, and programs used to validate the results have been prohibitively slow’. Debates and disputes should have been happening on a more regular basis inside the medical research community about the status of the science involved in brain work, and what this might have meant for public relations in terms of brain bequests. But this was not the case. To appreciate that context, and why it would later give rise to missed disputes, it is necessary to focus on the advent of brain banking because this provided the backdrop for future NHS scandals over retentions.

Cambridge University in the 1970s was the centre of new directions in neurosciences. In particular, it started to attract talented researchers interested in neurodegenerative disorders such as Huntington’s disease. By 1975, a consortium of these researchers had come together to form what became known as the Cambridge Brain Bank. Not only was this one of the first research facilities in the UK, but one of only four in the world at that time. Its nearest geographic rival was an early brain collection set up by Professor John (Nick) Corsellis (1915–1994) at Runwell Hospital in Essex during the 1950s which contained over 6,000 specimens from patients suffering from psychiatric illnesses, as well as neuro-degenerative diseases. However, although Corsellis shared brains with other leading researchers from time to time, his main research focus was brain collecting for his own use, rather than brain banking (in the latter, brain tissue is shared routinely for distribution amongst the research community). What made brain banking a new trend at Cambridge, and elsewhere, from the 1970s was the discovery that enzymes in brain tissue could be studied chemically post-mortem. So, for instance, in the case of dementia it was feasible after death to still study the enzymes active in brain tissue and reach meaningful results to potentially make better drug treatments. At a recent Witness Seminar run by the Wellcome Trust in London, Professor Gavin Reynolds described what it was like to be a young researcher and to acquire brain material at Cambridge in the 1970s:

Likewise, Professor David Mann elaborated on how a brain bank was set up in Manchester too and for what research reasons. Although lengthy, his explanation is worthwhile quoting in full, as it sets the scene for the Isaacs Report that we will be encountering later in this chapter. This was the typical sort of research pathway and actor network in pathology and new neuroscience that we have been rediscovering throughout this book:

Mann was pressed for his views on what he believed the general public thought about this sort of brain research at the time. He replied: ‘I think actually it was not in the public perception until the Alder Hey story broke and then the stuff really did hit the fan at that time. That really did impact upon brain collections and brain donations.’ It was his perspective as a young researcher that: ‘I think, by and large, people had an understanding of why it was necessary to collect brains and were happy to participate in that process, but with the Alder Hey scandal, the whole notion of pathologists became people who kept things in cellars and dark rooms. We were tarnished badly by the whole business.’⁴⁶

Other participants at the same oral history event spoke up for the first time concerning their personal feelings about Alder Hey. As Professor Margaret Esiri explained: ‘I felt very, very undermined by it. I felt the media portrayed it in the wrong way.’⁴⁷ She elaborated that:

These ethical issues were exacerbated, she explained, by a lack of communication. There were too many overlapping agencies involved. As a consequence, missed disputes occurred routinely in what was a fundamentally flawed coroner/pathologists’ set of procedures: ‘So [hospital] departments ended up with a lot of organs that they’d taken from coroners’ cases, and they didn’t know what to do with those organs afterwards.’ This was the complex cultural context that the Culshaw family experienced, too, in this chapter’s opening story. In order, however, to assess the historical value of these oral histories taken from a pathology perspective, and engage with the navigation of their feelings too, to balance the evidence of clinical and family lived experiences, it is necessary to understand a little bit more about the history of brain banking. In particular, we are going to focus in on the detailed activities of the Cambridge Brain Bank because it was pivotal to the actor networks of pathologists across the country and set new research standards that came in for significant public criticism involving many potential missed disputes after WWII.

Brain Banking

In 2003, the Department of Health (DofH) decided to investigate the controversial issue of brain retention in the post-war era. The research focus soon fell on the Cambridge Brain Bank because it was of national importance. Civil servants examined its paperwork processes and pathology records. The results of their findings are summarised in Table 6.1. In total, ‘2,547 … whole brains’ were banked for research purposes between 1980 and 2001, something that can be confirmed by cross-matching to Addenbrooke’s Hospital pathology records. The DofH report concluded that: ‘The Cambridge brain bank evolved from research undertaken by Dr. Bird in the Neurochemical Pharmacology Unit in the early 1970s. The first research was into Huntington’s Chorea (now referred to as Huntington’s disease).’ Having explained that context briefly, the report went on to state its broad findings from the DofH audit in 2003 (Tables 6.1 and 6.2). There were several important observations that would create a growing climate of mistrust in medical research, culminating in HTA2004. The first was that pathologists did not maintain proper post-mortem records. The DofH had a great deal of difficulty locating the incomplete paperwork trail. This meant that the figures they were able to ascertain were probably very conservative about the extent of unauthorised retentions. Anatomists, as we saw in Chapter 5, faced the same audit trail problem. They had been understaffed, had not done their paperwork efficiently in the 1980s and 1990s and thus had failed to get all their cremation work signed off officially by the DHSS once they had completed their teaching and research work on the dead. They looked guilty of holding on to human material for much longer than they actually did. In the case of pathologists, there was so little paperwork that it was difficult to assess for audit purposes whether the system was at fault because of similar low staffing issues or whether everyone preferred to operate with a lack of efficiency and transparency. One outcome, though, was certain. The DofH report concluded that a significant amount of paperwork involving the Cambridge Brain Back was destroyed, misfiled or never created in the first place from the 1970s onwards.

The auditors concluded that although they lacked accurate figures for the 1970s–1980s period, the surviving but scattered figures they had located for the 1990s probably reflected general working protocols. The DofH auditor thus explained that:

There was therefore a sustained culture of a lack of informed consent for families. In other words, although the figures available were incomplete, it was reasonable to conclude that there had been many different sorts of missed disputes generated inside the brain research community. Leading brain researchers did not necessarily know everything on the supply side about the activities of coroners and their pathologists or morticians. However, they also did not choose to look in any greater detail. As a result, it is only the recent oral histories (introduced above and elaborated below) which confirm that there was a lack of persistent questioning, notably from the pathologists on duty. The system was peopled by caring staff, but it was equally careless in its working practices, and this was the chief cause of different sorts of missed disputes by the late 1990s. It seemed thus that many people felt tarnished by a lack of others’ transparency. To better understand that wider context, we need now to turn our attention to the controversial Isaacs Report (2003), first introduced briefly in Chapter 2. It is a historical prism of what was happening on a regular basis inside hidden histories of the brain dead and outlines how paperwork was disguised, and crucial information withheld, to create missed disputes. Part II of this chapter is thus all about engaging with the human stories that people medical death and its neuroscience context.

The Isaacs Controversy

In April 2000, Mrs Elaine Isaacs discovered the retention of the brain of her deceased husband for post-mortem and further research purposes in Manchester.⁵⁰ She was very upset by this because the revelation came 13 years into widowhood under traumatic circumstances. On 26 February 1987, Mr Cyril Isaacs committed suicide. Aged 54 years, he had been suffering from episodes of mental ill health and had tried to take his own life on several occasions. His detailed medical case notes explain that during 1986–1987: ‘In the five months before his untimely death, Mr Isaacs had experienced depressive mental illness and had been under the care of both private and NHS doctors.’ In this state of mind: ‘He had taken three overdoses, two of these in the same weekend within one month of his death.’ Subsequently, it also reported that: ‘Mr Isaacs had received in-patient psychiatric care as a voluntary patient. He had been prescribed medication at the time of his death and was due to see his general practitioner Dr Rosenburg’ on the day he took his own life. In the evening, Mrs Isaacs and a relative named Mr Clive Lingard discovered Mr Isaacs dead at home. They made an emergency call to the police on Thursday evening, 26 February 1987. Mr Isaacs had hanged himself from a hatch in the loft. A duty police surgeon attended the suicide scene and pronounced death at 7.50 p.m. As the circumstances surrounding the unnatural death were unclear, it was essential to involve the coroner. This was when Mrs Isaacs lost control of the material fate of her dead husband, as Chapter 2 introduced, and a missed body dispute occurred that will be elaborated in detail here.

The Isaacs family were devout Jews. Their traditional faith required them to bury Mr Isaacs’s body within twenty-four hours of death. It must be ‘whole’: according to religious rites, it must not be cut extensively, and the organs must not be removed. They argued that as the cause of death was obvious, there were witnesses to verify its sad circumstances, and medical notes would confirm a recent case-history of depression, no post-mortem should take place. The coroner had the option to do just an autopsy. In this way, the family could adhere to their deeply felt culture of laying out the body at home, saying prayers for the dead over it and burying it according to orthodox Jewish rites. It was therefore very distressing for Mrs Isaacs and her son to discover that Mr Isaacs’s body was taken from the family home in preparation for a full post-mortem scheduled for Monday, 2 March 1987. An undertaker transported the body by arrangement with the local police. They issued instructions to deliver it to the mortuary at Prestwich Hospital, where the local coroner according to standard practice commissioned a full pathology report. The dead body arrived at 20.45 p.m. on 26 February 1987, just 55 minutes after the police surgeon on duty pronounced death. In material terms, it was a very fresh cadaver. The body, refrigerated overnight, would be in a good condition for pathology. It was also potentially ready for further medical research.

There were, according to the official records, two people present at the subsequent post-mortem – Dr R J Farrand (pathologist) and Mr Dennis Walkden (mortician) – both were acting for the coroner. They did bring forward the date of the post-mortem in recognition of the Jewish family’s burial rites. A written record confirms the removal of Mr Isaacs’s brain at 11.15 a.m. on Friday, 27 February 1987 by the conclusion of the post-mortem. In accordance with standard practice, those on duty telephoned the coroner, confirming that the cause of death was suicide. There was no evidence of foul play. The North Manchester’s Coronial Office released the body for burial to the family’s Jewish undertakers. Nobody informed them of the brain retention. Nor did it form part of the evidence presented at a reconvened Inquest conducted by Mr Bryan North, coroner for the area in which Mr Isaacs had died. As the verdict of suicide was unopposed, the coroner had the official capacity to declare it a ‘paper inquest’ (like the ‘non-jury’ cases of the past). This meant that various written documents (police report, GP statement, post-mortem evidence and so on) were enough to pass a verdict and establish there were no suspicious circumstances. Crime scene photographs were taken, but it was never officially explained why they did not form part of the Inquest evidence reviewed by the coroner (forensic teams in the event of an unexplained suicide take digital images as a matter of course). Mrs Isaacs did have an opportunity to attend the Inquest. She was supported by a solicitor and barrister arranged by the elders in the Jewish community. What upset the family the most was the final verdict of ‘Suicide … Hanging … Cyril Mark Isaacs died of the aforesaid at his home. He was found hanging from the loft by an electric flex’ [sic].⁵¹ In the Jewish community, the taking of life is taboo and there had been no official reference to Mr Isaacs’s accumulated history of mental ill health at the Inquest. The family felt that as it stood, the verdict could bring them cultural shame in their community since the exonerating circumstances did not form part of the official reporting.

Mrs Isaacs remained very troubled about her husband’s death and the removal of his body from their home for a post-mortem without her consent. She wrote many letters to the coroner, Mr Brian North, between 1987 and 1991 to query the verdict because it seemed to her to reflect a lack of cultural and human understanding. Each time, the coroner informed her that it was his duty to base his verdict on the written evidence presented by the police, witnesses and pathologist assigned to the case; their medico-legal verdict was prescribed in regulations and could not be adjusted retrospectively. Eventually, Mrs Isaacs managed to get official access to Mr Isaacs’s medical records still held by his general practitioner in April 2000. She was anxious to read these to see if they would exonerate in any way the stark verdict of suicide. What she found amongst her dead husband’s medical papers was surprising and upsetting. A letter to Mr Isaacs’s general practitioner, Dr Rosenburg, explained that the Department of Psychiatry at Manchester University ‘had collected samples from Mr Isaacs’ brain’ and the research team were anxious to frame their research study by reference to his history of mental ill-health and medication for depression administered prior to death. The coroner permitted this hidden history to be used for research purposes, but he did not reconsider the humanity of the suicide verdict. A dead husband’s brain was fresh, a research opportunity, and thus formed part of a large mental ill-health project. At the time of death, Mrs Isaacs had explained her religious convictions to the police, a coroner and her husband’s general practitioner. It was self-evident she had been ignored. There was a clear breach of medical ethics, resulting in a missed body parts dispute. Mrs Isaacs’s son thus wrote to the Secretary for Health, Hon. Alan Milburn MP, demanding a full investigation into the original circumstances surrounding the death, post-mortem, retention and disposal of Mr Cyril Isaacs’s brain. Events revealed a pathology and medical research cover-up.

On 29 July 2001, Her Majesties Inspector of Anatomy, Mr Jeremy Metters, conducted a formal investigation on behalf of the government into the controversial Isaacs Case. Over the next two years, his enquiries were extensive and exhaustive. He found that there was a ‘joint research team’ involved in brain study comprising members of the physiology and psychiatry departments at Manchester University. Their main research focus was neuropathology and in particular mental ill-health conditions (broadly defined). North Manchester Coronial service from 1985 to 1997 had routinely permitted the retention of brains for further research purposes at Manchester University without the knowledge of the families involved: a common practice amongst many pathologists employed by coroners across the country. In addition, GMP were criticised for their officious conduct in relation to Mrs Elaine Isaacs (a theme we will be returning to later in this chapter since such criticisms have re-emerged with renewed force recently, as we saw in our opening story of the Culshaws in this chapter). Essentially, the Isaacs Report (2003) highlighted:

1. 7. The report shows, among other things, that relatives were not aware that:

   1. ➢ Organs would be removed as part of a coroner’s post mortem examination;

   2. ➢ Organs removed might not be returned to the body after the post mortem examination;

   3. ➢ Organs could be retained legally by the coroner without their permission in connection with establishing the cause of death; and

   4. ➢ Organs might be retained for other purposes, such as research, without their consent and thus without legal authority.

2. 8. Relatives were not given:

   1. ➢ Information about the coroners’ post mortem process;

   2. ➢ Information about the options for the ultimate disposal of any organs removed;

   3. ➢ Support, advice or counselling; or

   4. ➢ Suitable consideration of religious or cultural beliefs.⁵²

Jeremy Metters provided a national census of all brain material held in research repositories across England and Wales (see Table 6.3). Mr Cyril Isaacs’s brain was one of 23,900 deposits that had been stored since the 1970s for further research purposes. Pathologists generated these on behalf of coroners across the UK. In Manchester, several morticians co-operated at Prestwich Hospital with this ‘supply mechanism of donation’ for a reported fee of ‘£10 per brain’. Although one particular coroner denied he knew the specifics of what was taking place, Metters concluded that this was ‘hardly credible’ under the circumstances. It appeared that ‘brain collections’ rather than ‘brain banking’ had constituted the majority of ‘retentions-without-consent’; it was difficult to retrace the individual research thresholds inside the supply system because the paperwork trail was either never created in the first place, had been destroyed subsequently or was ambiguous at best. The media and patients’ groups who took this as confirmation of a culture of duplicity queried the extent to which the official figures were a true picture of pathologists’ covert working practices and their corporate culture of denial.

Metters concluded that his figures were the best indication of the scale of brain retentions, and he distributed them into three research categories: Brain Accumulation (generally created by coroners’ cases via hospital mortuaries and commissioning pathology reports for post-mortem purposes); Brain Collection (held by pathology departments initially for diagnosis, but also for further teaching and research use); and Brain Banking (linked to pathology departments and university research centres), often working with relatives who have given consent to further specialised research into specific conditions like Creutzfeldt–Jakob Disease (hereafter CJD), Huntington’s or Alzheimer’s neuro-degenerative diseases. Metter decided that it was Brain Accumulations and Brain Collections that were ethically questionable. Pathologists had been working their way around the law to facilitate brain research.⁵³ Effectively, they colluded in a system of supply that ignored codes of practice on informed consent. In turn, these should have been defined properly under HTA1961 and Coroners Rules (see Chapters 2 and 5), but were not. The paternalism of the past had been exposed to public scrutiny and found wanting in a biomedical era. It was this culture of concealment which would result in HTA2004. Yet, like all new legislation, it would take time for ingrained attitudes to change. In other words, the medical research community that had relied on hidden histories of the dead for so long neglected to appreciate the range of disputes they had generated for the future. They did operate within the legal requirements of their time, but this also meant that medical ethics remain fixed in an era when biotechnology was fast changing. As a result, only by blending the numerous historical and hidden ethical issues created can we begin to appreciate their cultural ramifications, including, importantly, notions of trust and expertise, the problem of piecemeal legislation and the ambiguities of consent, which went undetected from the 1960s to 2000. This proved to be a public relations mistake, exposing differential power relations in an era of full democratic representation when everyone had a taxpayer stake in the NHS. There were many gains from the new era of medical research for the general public in this historical process, but equally the bereaved expressed how excluded they felt in terms of the role of memory, the changing boundaries of life and death and the scale of the Information State’s lack of accountability in their medical lives. To better appreciate how pathologists defended their position in response, we need to trace a representative sample of oral histories that document typical reactions to the public outcry for HTA2004 because of the scale of the missed disputes being rediscovered.

Once HTA2004 became law, many pathologists in the UK resented the position they were placed in. Most felt hounded by the media, made a scapegoat for the degree to which the Coronial service relied on their expertise. The Pathological Society of Great Britain and Ireland hence took the decision in 2008 to commission a new book by Sue Armstrong called A Matter of Life and Death: Conversations with Pathologists,⁵⁴ based on extensive interviews with practicing pathologists. An important theme of the oral histories assembled was the Alder Hey scandal in the NHS and its aftermath. There was uniform agreement amongst participants that it was ‘a dark hour for pathology’ across the British Isles and Ireland. As Professor James Ironside – an expert on the neuropathology of CJD and member of the new Human Tissue Authority set up in 2005 – explained:

Professor David Levison (now retired), former Chair in Pathology at Dundee University, reflected with a slightly different emphasis:

Others such as Professor Sebastian Lucas, Chair in Clinical Histopathology at Guy’s, King’s and St Thomas’ hospitals, pointed out that from a pathology point of view by 2008:

Most argued that it was poor communication that was at the heart of recent biomedical debates and the public exposure of pathology’s inner working practices. Irene Scheimberg, Consultant Paediatric and Perinatal Pathologist at the London Hospital, thus took the view that:

Scheimberg suggested that it was better for people when grieving to keep looking forward, an attitude of mind she had learned from the long history of being political refugees in her Jewish family of Russian extraction. Her personal motto was: ‘Memory is very wise – you don’t remember what you cannot live with.’ She did respect the fact that learning later that information had been withheld about human harvesting could be shocking for families. Consequently she explained how:

In this selection of oral history material we have therefore an important opportunity to elaborate on the conceptual approach of Alessandro Portelli, who reminded us at the start of this chapter about the importance of ‘the peculiarities of oral history’ and their subjectivity precisely because they are ‘not just about what people did, but [what] they wanted to do, what they believed they were doing, and what they now think they did’.⁶⁰ Thus, it is apparent that some pathologists operated on a need-to-know basis because they felt it was better to keep pressing ahead with their research agendas, and unkind to tell the general public everything about brain research when they were grieving. Others did not accept that the organ donation and pathology retentions in the NHS around 2000 were a scandal but a media-generated medical outrage designed to sell newspapers. Most had been as open and engaging in their working-lives as they could be under difficult circumstances, committed to communicating the importance of their work and legacy of human material retentions. Pathologists were thus complex actors, shaped by social, cultural, political, economic and administrative circumstances. Like all human beings, they could fail, and some did so in terms of public relations; for there was a general recognition by HTA2004 that pathology’s paternalism and patriarchy were past their clinical sell-by-date. Its actor network had to leave behind the ethics of conviction of the past and embrace the ethics of responsibility for tomorrow. Against this backdrop, the Royal College of Pathologists (hereafter RCP) have been working extensively to try to resolve these experiential issues, and they recognise the need for consensual medical ethics: a trend that has increased in the past ten years or so. There has been an official recognition that pathologists had taken a ‘proprietorial’ view of the body rather than a ‘custodial’ one: a theme that has run throughout all the chapters of this book.⁶¹ At the same time, in the intervening years since HTA2004, common themes have emerged in conversations with pathologists: as we saw above and touch on below, too.⁶² Ingrained attitudes have been of long duration, and some pathologists have refused to make the clinical adjustments, retiring early. There has continued to be ambivalence felt by many RCP members about the extent of public accountability required by new statutes, mushrooming bureaucracy and the media.

Today the RCP publishes widely its latest research and innovations, engaging the public with stories of how pathology into common cancers, for instance, saves lives every day in the NHS. It has also been keen to promote new solutions for old pathology problems. One innovation it has been eager to publicise is digital autopsies in cases where the probable causes of death are known in Coronial cases in England and Wales. RCP now recognises that CT scanning techniques could provide a cultural and practical solution for families like the Isaacs who would not consent to the cutting of the body and the removal of human material on religious grounds but would be amenable to a CT scan instead because it is non-invasive, replacing a post-mortem. The way it works is that the deceased can undergo a CT scan to confirm ‘unnatural death’ with a minimal amount of interference with the dead body. A new study published in the Lancet, co-ordinated by Professors Guy Rutty and Bruno Morgan at the University of Leicester, thus showed recently that in a sample size of 241 cases in which an adult had died of unexpected outcomes that were not necessarily suspicious, some 92 per cent of these coroners’ cases (where n=222) could be established from digital CT solutions.⁶³ Currently, the cost is £500 per case, paid for by the family in question, raising ethical issues about fair access to the technology for everyone, especially in communities of high-density ethnicity and poverty patterns. Nevertheless, as the RCP press office told the Guardian newspaper in May 2017: ‘The College fully supports further research in this area while reinforcing the need for thorough and robust governance in this emerging field.’⁶⁴ Evidently, the Isaacs Report was an important catalyst for cultural change in medical research around the Millennium in Britain. It has resulted in an emphasis on informed consent in brain research and finding new solutions to complex human dilemmas over the ownership and use of bodies and body parts. Even so, in interviews given off the record for this book, many pathologists have made it clear why they left the profession in the past five years or so. Most felt their job description ‘was now too restrictive’, ‘there’s just too much bureaucracy’ and ‘it’s taken away my sense of professional standing … I mean who wants to deal with all the hassle’.⁶⁵ So rather than reform from within, what has tended to happen since HTA2004 is that the numbers of qualified RCP members have thinned out. There is unquestionably a lot less hands-on experience than there once was inside the Coronial system. To balance this sense of a loss of professional expertise, the final section of this chapter thus returns to the human impact of pathologists’ workload, particularly involving those who have just retired or resigned from office. In this way, we can engage with a wider cross section of lived experiences of missed disputes, similar to the storyline of the Culshaw family which opened this chapter. For the events described test public trust in pathology work since HTA2004, which was supposed to have been changed fundamentally the national conversation about harvesting brains and human tissue retentions.

‘Hospital Stored Dead Children’s Brains in Jars’: Southampton Hospital under Public Scrutiny⁶⁶

In 2012, the Association of Chief Police Officers (hereafter ACPO) faced an ethical dilemma. They had to inform the Human Tissue Authority that a large number of organ and tissue retentions had gone unnoticed at the time of HTA2004. This was because the police had special powers concerning human material retention up until 2006. They were exempt under Section 39 of the HTA2004, as follows:

The Human Tissue Authority also issued a public statement clarifying that there were three statutes that authorised the police to hold human material. These were: the Coroners and Criminal Justice Act (Eliz. 2 c. 25: 2009), the Police and Criminal Evidence Act (Eliz. 2 c. 60: 1984, especially sections 19 & 22) and the Criminal Procedure and Investigation Act (Eliz. 2 c. 25: 1996). Together they permitted an investigating officer to be present at a post-mortem, which they had authorised by virtue of asking forensic scientists and Home Office pathologists to lawfully enter premises and seize whatever material evidence was necessary to bring a criminal act to justice. They also had extra powers under English Common Law of seizure for physical items or human material found elsewhere that were not on the premises of a specific crime in the locality where it was committed. Since these procedures had overlapping regulations, there was not a coherent national policy in the police force of how to seize, record, evaluate evidence, present in court and return human material after a conviction or court hearing. The Murder Manual (2006, especially Section 11) did try to give clear pathology guidelines, but this too resulted in disparity amongst actual police forces in England and Wales, with individual senior officers taking a pragmatic view of their particular medico-legal position. The ACPO thus conceded in 2012 that many police forces did not actually know what their responsibilities were in respect of human material retentions. Most thought this problem of a lack of uniformity was delegated to coroners and their pathologists to monitor and resolve, given the former’s historic powers of discretionary justice (a theme we encountered in Chapter 5).

In 2012 a central government commissioned ACPO audit grew out of the National Gold Group established alongside the National Police Improvement Agency (later to be renamed the Home Office Pathology Unit). These policing bodies were granted permission to take proper legal advice from suitably qualified barristers during the national audit process, which was concerned with three categories of material infringement:

Category 3 formed the central focus of the ACPO audit, in liaison with the Human Tissue Authority. Together they found that ‘492 organs’ or what was described as ‘significant [sic] body parts [brains] were held on police premises or other establishments. These related to historical cases going back to the 1960s.’ To try to reassure the public that this did not repeat Alder Hey, the Human Tissue Authority issued a press release confirming that ‘between 1960 and 2010 there had been 6.2 million PM [post-mortem] examinations’ conducted in England and Wales. Of these 6.2 million, just 2.45 per cent, or 151,900, resulted in the need for a forensic examination in which the police became involved. Of the 151,900 cases, only 0.33 per cent, or 50,633, related to potential organ retentions or significant body parts kept by the police and their Home Office pathologists.⁶⁹ Yet, this statistical statement still did not provide enough reassurance to the families involved, because even a basic calculation underscored that in a 50-year period, on average there were not less than 1,000 cases a year that could potentially have resulted in missed body disputes. It was (again) media testimony of those who were misled that would prove to be a powerful reminder of the need to remain vigilant in a biomedical era.

At first, ACPO tried to counter any negative publicity by stressing the expertise of those that retained the human material and the important legal reasons for doing so. Thus, it was explained that under police powers, a selection of NHS hospital premises were designated as regional autopsy units. Here coroners and their pathologists on behalf of the Home Office had stored human material pending a court case. The Home Office expressed regret that human material had been kept without informing families, but the police tried to reassure the media that it was done in the best interests of criminal justice. One such location was Southampton Hospital in Dorset, a regional autopsy unit for the West Country. The families involved were told on a case-by-case basis that their loved one’s remains were still in cold storage. It did not help that as this slow process was just getting under way, a civil servant at the Home Office was despatched to tell the press that: ‘It is down to individual forces to decide … whether the material is needed or not. In some cases the retention period may have been longer than necessary.’ This was a classic case of official understatement, as events subsequently proved in the press.

On 14 August 2012, the Sun newspaper led with a headline – ‘They took brains from our boys too … WHY?’ Their investigative journalist, John Coles, spoke to Hannah Cheevers, whose baby son had died of a heart defect aged 2 days old in 1998, and Melanie Galton, whose infant son died aged 1 of sudden infant death syndrome in 1997. Each was told that there would be a post-mortem, but neither was informed that their offspring’s brain had been retained and kept for 15 years by pathologists on behalf of the police. Melanie explained:

In a similar refrain, Hannah Cheevers and her partner, Martin Lovell, from Wimborne Dorset were shocked to be in an equivalent missed body part dispute. Hannah recounted:

Each mother recalled having to go through a harrowing series of police enquiries at the time of their child’s death to make sure that it was not suspicious – it felt as though old and very painful memories were being re-opened again. Indeed, one of the most poignant press stories to appear was that of Ryan Franklin who ‘was killed by his dad, aged two in 2002’. A case of manslaughter was secured in court based on medical evidence that the child had been battered to death. His mother then explained what happened a decade later. She was told by Southampton Hospital that her dead baby’s brain, eyes and spinal cord had been retained. Like the other mothers affected, she had known it was necessary to have a post-mortem but she claimed that she had said ‘no to donating his organs’, telling doctors in 2002: ‘He came into this world full and I want him to go out full – don’t touch him.’⁷² Around the time of the Alder Hey scandal, she began to suspect that she may have been misinformed. This uneasy sense of a missed dispute re-emerged in 2012: ‘When I heard about this review police are carrying out I hoped they would have got in touch with me. I would like someone to come forward and tell me what’s happened to his organs so I can have closure.’ Catherine Franklin ‘discovered that some of Ryan’s organs had been taken. His eyes went to a hospital in Sheffield for research – but no one knew what happened to the rest.’ The newspaper reporter explained how she had gone on to have ‘another son, Benjamin, eight’. Nonetheless Catherine stressed: ‘Every time I try to find out what happened I hit a brick wall. I hope now police are doing their audit I’ll finally get the truth’ about what really happened. In fact, it soon emerged that there were forty cases in Southampton all relating to young dead children whose brains had been removed and stored.⁷³ In the majority of cases, it appeared that any fears of suspicious deaths were cleared up quickly and no physical evidence for the criminal court was necessary to secure a conviction. Each was a tragic tale of child bereavement. The mothers, according to their own testimony, all found the pain of loss almost unbearable to experience again after ten years had elapsed.

Personal spoken and reported histories like these representative cases provide thought-provoking testimony concerning the conduct of the medical research community in a biomedical era. Their discourse reiterates Alessandro Portelli’s inciteful comments (encountered earlier in this chapter’s introduction) about the value of the ‘the peculiarities of oral history’ in the medical humanities. Their subjectivity again reveals ‘not just about what people did, but [what] they wanted to do, what they believed they were doing, and what they now think they did’.⁷⁴ To many pathologists, it had seemed that the press has been responsible for stirring up emotive stories and putting the spin of scandal on the editorial byline to sell more newspapers about the recent ACPO audit findings. Yet, it is undeniable that the same sorts of experiential histories were often repeated, and verbatim by those families involved. Indeed, as Philip Cheung has recently pointed out, it is impossible to deny how much the twice-bereaved have needed each other for support when missed body parts disputes recur, exemplified by the number of support groups that have been set up and continue to flourish today. There is:

Cheung points out that there is ‘a danger that’ such support groups will ‘be seen by scientists and medical researchers as anti-science and anti-research’.⁷⁶ Many scientists do not believe in an afterlife or appreciate that the physical remains can have a powerful meaning in the grieving process of the bereaved, even though there is ample evidence that the GMP failed not only the Isaacs family in 2002, but the Culshaws and others more recently. Too often, points out Cheung, such families who express strong natural emotions are ‘perceived in the same light as animal research campaigners’. He thus argues that the medical research community need to accept ‘the challenge of shaping ideas and attitudes’ to their work and its importance by meeting those bereaved with genuine humanity to bridge the recent past to a better biomedical future for everybody. It is therefore informative and important how the journal Science reported on 7 April 2017 that: ‘the Rules of Memory are being beautifully rewritten’.⁷⁷ Because such perspectives have the potential to reshape how historians evaluate oral histories on the sensitive topic of missed disputes too.

It is often said in the global media that the British have a character trait that is admired around the world. They are renowned for being stoic, exemplifying the stiff upper lip in times of adversity. It was a national trait that was said to have brought the country through two world wars, associated food rationing and many millions of deaths. As, however, public tastes changed during the 1960s with the liberalisation of British society, the old values of a wartime generation were refashioned. It became culturally less acceptable to button-up emotions, and instead many more people began to speak about issues of mental health and well-being. Today, it is a popular topic of national conversation in Britain. At the same time as this process of promoting more compassion and understanding of mental and physical well-being was happening, neuroscience was also contributing to debates about the relationship between the brain and emotions. Recently, evidence has come to light that the way we thought the brain absorbed and accommodated trauma has been misleading. In the past, a medical assumption was made that the best way to help people to get over a very traumatic episode in their life was never to talk about it again – the stoic approach. Then this changed from the 1960s with qualified therapists encouraging those suffering from mental ill-health to come to terms with a dramatic experience by talking it through – the compartmentalising approach. Each medical intervention was about reviewing negative experiences and helping the patient to move on in a more positive direction. However, new scientific studies in Japan and the USA have challenged the neuroscience of this type of trauma management, and the results of these recent scientific findings are very important for assessing the emotional reactions of families to the missed disputes of the ACPO audit in 2017. The key to understanding what the bereaved were going through has been to better appreciate that the way we thought we handled and remembered trauma has been scientifically incorrect.

The brain is clever. It seeks to protect us in trauma. To do this, it does not ask us to be exclusively stoic or to compartmentalise what is happening when confronted by extreme stress. Instead, new scientific studies in Japan and the USA have found ground-breaking evidence that all painful memories are absorbed in two ways. First, the brain will store short-term recollections when we are in shock. Then, at the same time, it begins a neurological process of transferring the memories of that initial trauma from the hippocampus of the brain. Slowly, the brain has a neurological mechanism that converts short-term experiences into long-term memories in the cerebral cortex where they are ‘banked’ for life. In this way, the brain ‘doubles up’ its memory system. It creates two simultaneous memories that mirror each other every time we experience something out of the ordinary as human beings.⁷⁸ This neurological balancing act is unconscious in the mind. The function of this doubling up is to help us as human beings to live with what has happened. We cope by assimilating together physical reactions (short-term shock, hippocampus) and their emotional impact (long-term feelings, cerebral cortex) of trauma. This works well neurologically, provided that the balancing mechanism is not disturbed. If, many years after a shocking event, it revived in an unexpected manner, then that would have the effect of unbalancing the brain’s trauma survival mechanism. So, we can be stoic and we can compartmentalise, precisely because of the amazing balancing mechanism in our brains, and this is what scientists mean when they say that ‘the Rules of Memory are being beautifully rewritten’.⁷⁹ In 2017, the families involved in the findings of the ACPO audit experienced what happens when this newly discovered neurological balancing system was disturbed by reviving painful memories.

When we encounter oral histories and the navigation of their feelings in a history of emotions, it is important in the medical humanities not simply to dismiss their testimony of trauma as too subjective. In fact, what people recount is telling us that we need to fully consider the latest neurological perspectives of what is happening in the brains of the bereaved. The ACPO families experienced what it was like to go through a missed dispute about withheld information. This destabilised the short-term and long-term neurological centres of memory formation and unbalanced the maintenance of their well-being. Those involved thus found it mentally very hard to cope, and this is verifiable by the neuroscience of memory formation and maintenance. Effectively, some experienced a neurological U-turn that triggered a very stressful episode in the mind’s emotional centres. Importantly, the implications for this book’s study into missed disputes and how people emotionally react (hippocampus, short-term shock) and learn to live with the unpalatable facts (cortex assimilation, very painful emotions) are profound. If medically correct, Mrs Jean Culshaw and others like her were not being duplicitous or exaggerating when they said they were ‘suffering’ mental upheaval in March 2017. In neurological terms, their minds were, literally, disturbed, as they had to again go through very painful memories from 1993. Thus, in a history of emotions, scholars, such as William Reddy, are correct to emphasise how talking about feelings is essentially the only way that a person can then rebalance if forced to revisit something so painful.⁸⁰ Ironically, science, which has long stressed its dispassionate and secular purpose (laudable aims), has itself discovered that the brain has a ‘beautiful’ medical function that is all about re-balancing the rational and the instinctive when missed disputes occur. It works with human nature holistically, and this is a significant finding for the medical humanities, echoing what George Steiner the moral philosopher suggested in this book’s Part I. The brain does not discard ‘old’ information for ‘new’ memories – instead, it runs these lived experiences ‘in parallel’ because life is like that, and this is what keeps us creative as human beings. In other words, those involved in missed disputes could cope well, provided communication was very good and trust existed between all those involved in the network of actors when a crisis point involving the death of a loved one had to be revisited. To illustrate that there could be more positive outcomes in this more transparent process for pathologists too, we end with the sort of brain story that seldom features in oral histories or the press on this sensitive topic.

In 2000, Sean and Sarah Luff became new parents. Tragically, soon after birth, their 3-day-old baby died because of medical negligence in Southampton Hospital. Mistakenly, staff on duty gave him a morphine overdose – ‘100 times the proper dose of painkillers’ – in an attempt to save his young life.⁸¹ At a subsequent Inquest, the medical evidence established that their son would have died in any case, such were the fatal complications in this sad case. This did not excuse the medical errors, but the hope was that the forensic findings would alleviate the Luffs’ concerns that their baby was not in pain when he died. However, the family was shocked when Dorset police informed them in 2012 that Southampton Hospital had retained their baby son’s brain in a jar without their consent in 2000. Sean Luff asked: ‘How many times can one family, and one little baby, be betrayed by the authorities?’ He questioned in the press: ‘How much more heartache can they inflict on us?’ There was, even so, to be a twist to this news story, and one that exemplifies the Janus-like nature of pathology expertise today. In February 2012, Sean Luff received a diagnosis of myeloid leukaemia. This happened just several months after Dorset police informed him about his dead son’s brain retention. Sean became very ill and had to endure ‘three gruelling sessions of chemotherapy and a bone marrow transplant’.⁸² Unfortunately, this series of life-saving treatments compromised his immune system, and he caught pneumonia just before the Christmas holidays in 2013. Because Sean was unable to fight the serious infection in his lungs, doctors judged it best to place him in a medically induced coma. It would take eight months of intensive care before Sean was stabilised and able to go home. Yet, the medical team that had saved his life three times in those eight months was based at Southampton Hospital, where his baby son had died under exceptionally stressful and medically culpable circumstances, twelve years earlier. Even so, the Luff extended family were grateful for Sean’s recent medical interventions. They hence decided to raise money for more medical research at Southampton Hospital in August 2013. The Luffs were happy to publicise the good work of medical staff in the local press. There was self-evidently a pathology paradox in this case, and a poignant one. Sean Ruff was kept alive by the same expertise that had once retained his baby son’s brain without his consent. The latter’s successful outcome did not justify the lack of medical ethics in the former case-history. Yet, it did make for a thought-provoking parallel in what have too often been hidden histories of the brain. For it left open the unanswered question: How much more could have been achieved if brain research and retentions had been a more open and engaging research partnership with the bereaved across Britain after WWII?