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Interim Report: Removal and retention of human material
Annex A: An account of the evidence to the Inquiry on the removal and retention of human material at post-mortem
Part I: The national context
Hospital post-mortems
Coroners'
post-mortems
Purposes
of a post-mortem
The
prevailing view of the value of post-mortems and subsequent retention,
use and disposal of human material
Parents'
knowledge about the removal and long-term retention of human material
The
clinician's understanding of the entitlement to remove and retain human
material at a post-mortem
The
clinician's understanding of the entitlement subsequently to use human
material removed at post-mortem
The
practice in relation to disposal of human material taken during a Coroner's
post-mortem
Guidance
to the medical profession in existence in the period of the Inquiry's
terms of reference, 1984 to 1995 and later
Removal
of human material
Removal
- Coroners' post-mortems
Retention
of human material as part of Coroners' post-mortems
Disposal
of human material
Hospital
post-mortems and consent forms
The
decline during the period 1984 to 1995 in the number of hospital post-mortems
as opposed to Coroners' post-mortems
- Professor Michael Alan Green, consultant pathologist to the Home
Office, confirmed that, in the past, when obtaining consent to hospital
post-mortems, the prevailing culture was not to go into details with
the family of the deceased about precisely what was involved in a post-mortem.
He charted the changes in attitude, as he saw them, from the time that
the Human Tissue Act 1961 (the 1961 Act) was passed. He told the Inquiry:
'I qualified in 1960. The Human Tissue Act was passed in 1961. My generation were, therefore, taught by those who had always themselves been taught that there was no property in a dead body and the general lesson that was drilled into me as a medical student was: be courteous, be polite, explain that you are asking for permission for this autopsy because it will help others, both in learning and in the treatment of disease, but do not go into any more detail; it will upset the relatives and they might refuse consent. This was the attitude on which my generation was brought up.' [2]
- Even when the notion of consent to a hospital post-mortem became
more widespread in the medical profession, parents were still given
few details either of what a hospital post-mortem actually involved
or about the possibility or likelihood of the retention of human material
after the hospital post-mortem. Parents were not told, or at least did
not understand, that they would not be 'burying all of their child'.
Professor Green told the Inquiry:
'The Human Tissue Act was passed [in 1961]. At first it made little difference. I think everybody, both hospital management and clinicians, said "But we are doing all this anyway. We have a consent form which we always have witnessed", and in those days there were no such things as bereavement counselling officers. It was usually the senior house officer (SHO) or the Registrar who saw the relatives and got permission, and you simply had a bald consent form which said "I, being [the wife, husband, et cetera] of ... hereby agree to an autopsy being carried out. I understand this will help advance medical knowledge", or words to that effect.
'There was nothing organ specific and equally, there was no option of a limited or restricted post-mortem...' [3]
- The traditional attitude of the pathology profession was described
by Professor Green as:
'The general feeling when the Act was first passed that it did not make all that much more difference, you only needed one extra sentence in the consent form. The realisation that specific agreement to the retention of organs and tissues [was needed] I think crept on the profession more generally and, I think, the profession in general over those early years of my involvement with it - and I admit it freely and I think most doctors of my age do - is that we were generally rather paternalistic. We knew what was best for the patients and the relatives and did not want to upset them and this was the attitude which was inculcated.' [4]
- Professor Green explained how, prior to the period with which the
Inquiry is directly concerned, the prevailing professional attitude
towards the authorisation of hospital post-mortems had begun to change.
He said:
'As I say, immediately after the passing of the Human Tissue Act it did not make very much difference. Then I suppose in the 1970s people started talking about "informed consent", which in my view is an Americanism which has crept into English law; I was always taught to talk about "valid consent", but the realisation dawned on the profession that fully informed consent involved rather more than just using the old-fashioned bald one-paragraph consent form ... I got the feeling that there was a gradual swing to them either verbally or in writing incorporating, "I understand that it might be necessary to retain certain tissues for further examination"; but, as far as I know, it is only in the last few years in this present decade [5] that people have then carried it forward and started making what I call the organ-specific consent form, which is the thing that is now recognised, and by the time the book which you have before you was published in 1991 I had said, and I quote from memory, "under no circumstances should this issue be fudged", and emphasised the point that to comply with the Human Tissue Act, ...
'Even so, I think from the early 1980s onwards I, certainly in my teaching, was emphasising to medical students and to young doctors, "Look, distasteful though you might find it, you must get used to the idea of asking relatives specifically for retention of an organ or tissues"... we really had to get our act together and start being more specific.' [6]
Coroners' post-mortems
- Mr Michael J C Burgess, Secretary of the Coroners' Society of England
and Wales [7],
told the Inquiry about the present practice in respect of Coroners'
post-mortems, for which consent is not required.
'The information that is given to a family depends very much on their ability or perceived ability to receive it. There is no point in information overload, so I am sure most of us, and our officers, will inform the family of the examination taking place; that it will be made by a pathologist, a doctor who is qualified in a particular field or expertise; very often the timing of the examination; sometimes the venue, if it is not obvious from the way in which the exchanges have at that point taken place; and the expectation as to a result, in other words, that we are hoping that this examination may establish for us what it is that happened that gave rise to the death that has happened.'
- However, Mr Burgess told the Inquiry that a Coroner is instructed
in the Practice Notes for Coroners ideally to give the family
of the deceased the following information:
'concerning the intended examination in writing, if necessary; if they desire to be represented at the examination then their nominated medical practitioner should be told of the examination arrangements. The family should be told if there is any delay and, in due course, the result of the examination. It might be appropriate to offer that the result of the examination be forwarded to their nominated medical attendant so that this can be explained to them.' [8]
Purposes of a post-mortem
- Professor Berry, Consultant Paediatric Pathologist at Bristol since1983
and Professor of Paediatric Pathology at the University of Bristol since
1990, saw several purposes of post-mortem examination. He was of the
view that it:
'should take place and that the examination should be part of formal audit and review, fed back as appropriate to parents, providing information, and the autopsy should be carried out according to the parents' needs and giving them choice and information including, if the coroner is not involved, their right not to have a post-mortem examination and, if they choose, their right not to know what goes on.' [9]
- The post-mortem examination also aids the surgeon. Mr Janardan Dhasmana,
Consultant Cardiac Surgeon at Bristol from 1 January 1986 to 9 September
1998, said that it is
'a necessary requirement to improve one's knowledge and also to check on one's technique and learn from post-mortem examinations.' [10]
- Mr Burgess, as a Coroner, saw the post-mortem examination in a wider
context as a public policy issue. He said at the Inquiry that
'getting better general health for the public [is an aim], so there is an undercurrent suggesting that if the post-mortem information can be improved, then there will be a corresponding improvement for general health purposes'. [11]
Further, in the case of hospital post-mortems, another purpose is that:
'major errors come to light and steps are taken to prevent them occurring again.' [12]
The prevailing view of the value of post-mortems and subsequent retention, use and disposal of human material
- The benefits accruing from and the consequent importance of the post-mortem examination were emphasised in the evidence to the Inquiry.
- Professor Robert Anderson, President elect of the British Paediatric
Cardiac Association, Professor of Morphology at Great Ormond Street
and Joseph Levy Foundation Professor of Paediatric Cardiac Morphology,
University College, London, explained the benefits of retention of human
material:
'we examine them for the purposes of our research. We demonstrate them. We make them available for others to study....[but] to a certain extent they become damaged ... which is why I believe it is essential that we keep on adding to these collections so that we have the capability of teaching tomorrow's surgeons and tomorrow's paediatric cardiologists better than we have been doing at the present time.' [13]
- As to longer-term retention, in the case of cardiac surgery the Inquiry also heard evidence from Professor Anderson regarding the benefits of retaining hearts for the purpose of study and teaching. He considered that one of the many reasons for improvements in mortality in centres of excellence for cardiac surgery was the knowledge that had accrued from the study of retained hearts. [14] He gave evidence as to the scale of the retention of congenitally malformed hearts in this country. [15] He estimated that the largest collection was at Alder Hey Children's Hospital with approximately 2,500 hearts; he himself had built up a collection at the Royal Brompton Hospital of some 2,000; there were collections at Great Ormond Street of 2,000, at Birmingham Children's Hospital of about 1,500 and other, smaller collections, in Leeds, Bristol, Southampton, Newcastle and Manchester.
- He explained that, in the case of a congenitally malformed heart, it was thought necessary to retain the whole organ in order to study and demonstrate it [16]. 'In the case of a heart, no two organs are ever identical, and, for proper study, it is essential to retain the entire organ.' [17]
- The Inquiry was also told by Professor Berry:
'one of the benefits of the widespread practice of retention of tissue and organs is to increase understanding of medical diagnosis, disease processes and surgical practice to help future patients. This has been of particular value in the field of paediatric cardiac surgery, a high risk and relatively new speciality.' [18]
- Professor Berry emphasised the importance of removal and retention
of the heart when undertaking a post-mortem on a patient who had undergone
cardiac surgery. A period of retention may be necessary to understand
the individual case. He said:
'the heart is always removed during the course of the post-mortem examination. It depends what level of examination is required. It would be very easy just to look at the heart and say congenital heart disease is present, surgery has been performed, and to return it to the body. But if one wishes to try and approach what really happened and provide useful information, then I believe the heart has to be retained for a period for proper examination in a quiet place with good light, proper instruments and so on, separate from the actual mortuary itself.' [19]
- Professor Berry also emphasised the potential utility of longer-term
retention:
'many of these conditions are rare and no two hearts with a given condition are quite the same. So by keeping quite a large number (a very large number to people who are not pathologists), it is possible to provide somebody who wishes to study a particular anomaly a range of examples that would take them many years to see in their own practice.' [20]
- As a consequence, Professor Berry said of the retention of human
material at Bristol that:
'this represented best practice as seen by doctors at the time, and that what I was doing and my colleagues were doing was entirely usual.' [21]
Parents' knowledge about the removal and long-term retention of human material
- The necessity of removing the heart at post-mortem may well not be
understood by many parents. One parent told the Inquiry:
'whilst I accept that a post-mortem can be ordered by a Coroner, that does not mean that organs need to be removed or indeed should be removed.' [22]
- Parents were not informed about the practice of retention after the
examination, where a Coroner's or hospital post-mortem, was concluded.
Professor Roderick MacSween then President of the Royal College of Pathologists,
said in his witness statement:
'if organs were to be retained for use as museum specimens etc, it was felt that "doctor knows best" and that relatives should not be further distressed by being presented with a list of organs which might be retained.' [23]
- The removal and then retention of the heart for a period of time for the purpose of the post-mortem itself would very often mean that the heart could not be returned to the body before a funeral was carried out. This was also the case if the heart was retained for other purposes. Many parents were unaware of this.
- Professor Robert Anderson told the Inquiry that, until recently at
least:
'When I then came to the Royal Brompton and started to build up my own collection of hearts, because I was not a pathologist - and I am not trying to deflect the decision-making in any way here - but because I was not a pathologist, the pathologist would remove the organs at autopsy, for which we had received consent, so unless it was a Coroner's case and we presumed that the consent given for the autopsy permitted us then to retain the organs, we never asked the question; had the parents been asked if it was appropriate for us to retain the organs? We presumed that appropriate permission had been given. But I think we were wrong in that respect. I do not think we asked the question. I think we should have asked the question because I think that had we explained - and I think we did explain, we always explained to the parents why we wanted to do the autopsy. We explained to them that we wanted to gain from examining the organs of what we recognised was for them a tragic loss, and we hoped that from this tragic loss we could prevent such things happening in future. I think that huge advances we have made over that period have been testimony to the justification of what we were doing. But I do not think that we explained to the parents that we were going to retain the hearts. I think we should have done. I think we were wrong to presume that we had that right.' [24]
The clinician's understanding of the entitlement to remove and retain human material at a post-mortem
- Professor Green told the Inquiry that, in respect of hospital post-mortems:
'the view that was generally taken was that in hospital permission cases, the consent which the relative had given for the retention of tissues or organs allowed one to take whatever one felt may be useful for medical research.' [25]
- Professor Anderson's evidence contained the following exchange with
Counsel to the Inquiry:
'Q. If you were asked for your view as to what legal or moral right pathologists, and morphologists like yourself, had to retain and examine hearts, looking back at it, what would you say?
A. I think in terms of the legal view, I would have to say that we did not ask that question. I still do not know the answer. I think from the moral view, I am convinced that morally we were right to do that [take the hearts], because I think that the advantage we have gained from the study of those hearts totally substantiates the fact that the organs were retained, perhaps incorrectly. But I think the advances that we have made in diagnosis and treatment would not have been possible had we not retained the hearts and had we not built up these collections.' [26]
- Professor Berry was, however, at the least aware that the entitlement
to retain human material taken at a coroner's post-mortem was legally
and ethically complex. He recognised that:
'whilst carrying out a post-mortem examination for HM Coroner, the pathologist is an independent practitioner not acting for the hospital or Trust. The grey area arises because of course most [pathologists] work out of hospitals and so the tissues usually, but not always, come on to NHS premises ... So to what extent a Trust becomes responsible for tissues which may have been removed from one of their patients who may or may not be lying in the same hospital at that time is a difficult one.' [27]
The clinician's understanding of the entitlement subsequently to use human material removed at post-mortem
- As regards hospital post-mortems, Professor Green was asked about
a passage in the Royal College of Physicians' 1990 guidelines to the
effect that:
'the anonymous use for research of tissues genuinely discarded in the course of medical treatment ... and of tissues removed at surgery or at autopsy is a traditional and ethically acceptable practice that does not need consent from patients or relatives.' [28]
- Professor Green was asked whether this view was the understanding
then common amongst pathologists. He replied:
'It was the understanding that was common amongst pathologists and it was the understanding that was common amongst clinicians as well, particularly surgeons, of course.' [29]
- As regards coroners' post-mortems, the Inquiry heard evidence from
Professor Green that during the period of the Inquiry's terms of reference
the understanding of the pathology profession in respect of the subsequent
use of human material removed during a Coroner's post-mortem pursuant
to Rule 9 of the Coroners' Rules was:
'Our understanding was and I think still is - and this, as I say, has been confirmed repeatedly by the different coroners I have spoken to - the Sheffield Department serves a total of 15 Coroners, full- and part-time, and in the course of my career I consulted with all of them - that you can only take material to establish the cause of death under Rule 9 (Coroners' Rules 1984); but once the cause of death has been established and the coronial process has been completed, fixed tissue in particular can be used for research purposes ... throughout my career, putting it shortly, we always understood - and the coroners for whom I worked always understood - that although you could only retain tissue to confirm the cause of death, once that had been done you could use that tissue for research and teaching purposes.' [30]
- Professor Berry concurred with the prevailing view that human material
removed during a Coroner's post-mortem could be retained and used by
the pathologist once the Coroner was functus officio (had discharged
his legal duty), having established the cause of death. He considered
such a practice to be in accordance with the law and with the ethics
of his profession. He told the Inquiry:
'our views are based on common practice, the law and ethics ... I think our view was that tissue which was lawfully obtained and was no longer required for its original purpose could ethically be used for the greater good, if you like.' [31]
- Dr Michael Ashworth's understanding was that human material removed
at Coroners' post-mortems could be used for research purposes so long
as the primary purpose for which they were removed was not research.
(Dr Ashworth was appointed to a post as a consultant paediatric pathologist
at the UBHT in 1993.) Dr Ashworth agreed with the Royal College of Physicians'
1990 guidelines, and then was asked, in relation to Coroners' post-mortems:
'So tissues removed at surgery or at autopsy could be used for research purposes?'
He replied:
'Provided they were not taken primarily for the research purpose.
Q. So if they were taken for Rule 9 purposes originally?
A. Yes.
Q. Once a Coroner has finished, they could be used for research purposes ...?
A. Yes.' [32]
- Professor Green told the Inquiry, in respect of Coroners' post-mortems:
'once the Coroner has discharged his function and he is functus officio, that piece of tissue is in effect the property of the pathologist and the department which has processed it. It has had something done to it and therefore it is perfectly licit to use ... for research purposes; it is perfectly licit to use that organ for teaching purposes, museum purposes.' [33]
- Whether the view advanced by Professor Green concerning a Coroner's
post-mortem is correct as a matter of law is addressed elsewhere
[34]. For
present purposes, it is necessary to note only that: (a) the pathologist
carrying out a Coroner's post-mortem does so as the Coroner's agent;
(b) the question arises, once the Coroner is functus officio,
of the legal basis for continued retention of human material by the
pathologist; (c) the question of whether or not the human material becomes
'the property of' the pathologist is problematical; and (d) it is by
no means clear that, even if that pathologist is entitled to retain
the human material, he has a right, as Professor Green claims, to use
it for teaching or research purposes.
The practice in relation to disposal of human material taken during a Coroner's post-mortem
- The Inquiry was told by Professor Berry that:
'the Coroner did not give any specific instructions about the release or disposal of tissues and organs. It was presumed in practice that custodial responsibility for retained tissues remained with the pathologist once the Coroner had accepted his report, and a reasonable time for any queries from interested parties had passed ... this was the standard practice across the whole country.' [35]
Guidance to the medical profession in existence in the period of the Inquiry's terms of reference, 1984 to 1995 and later
Removal of human material
- In August 1977, the Department of Health and Social Security ('DHSS')
published Health Circular (77) 28 Removal of Human Tissue at Post-mortem
Examination - Human Tissue Act 1961. [36]
It stated, in respect of hospital post-mortems, that:
'the removal of tissue may be authorised only if, after having made such reasonable enquiry as may be practicable, the person lawfully in possession of the body has no reason to believe that the deceased had expressed objection or that a surviving spouse or other relative objects. Specific consent is not required by the Act.'
This was sent to all coroners [37] 'in view of the widespread publicity given recently in the national press to the considerations governing the removal of organs after death'. [38]
But the Inquiry heard no evidence that this advice on hospital post-mortems had any bearing on Coroners' approach to Coroners' post-mortems.
Removal - Coroners' post-mortems
- In 1985 Professor Bernard Knight, Consultant Pathologist to the Home
Office since 1965 and Professor of Forensic Pathology, University of
Wales College of Medicine since 1980, wrote and published in the Bulletin
of the Royal College of Pathologists an article entitled 'Legal
considerations in the retention of post-mortem material.'
[39] He discussed
the retention of human material after a Coroner's post-mortem and stated:
'the retention of tissue for teaching and research is not covered by the Coroner's permission and "the Coroner cannot grant such permission", as it is not within his remit to do so.'
This article was drawn to the attention of Professor Berry in a letter dated 24 December 1985. [40]
- In the course of his exchange with Leading Counsel to the Inquiry,
it became clear that there were problems over the meaning of the word
'retention'. Professor Berry understood Professor Knight's use of the
word 'retention' to be referring to the retention of human material
other than that lawfully removed during a Coroner's post-mortem in order
to establish the cause of death:
'Q. So what Professor Knight appears to be saying is - whether he is right or wrong is beside the point - what he appears to be saying is that you cannot keep tissue after a Coroner's examination, except for the purpose of establishing the cause of death?
A. That is correct. But I think pathologists and I think - I will not try and speak for lawyers and I look forward to the opinion that you receive, sir - but I think it is a generally held view that, if tissue has been legally and properly retained during the course of a Coroner's post-mortem examination, then it may be further retained for the legitimate processes such as medical audit, clinico-pathological review and so on.
As you have seen from my statement, I have modified my views about how this should be done with information given to relatives and consent sought where appropriate, but at that time, and until really quite recently, the view was that, if it was legally and properly retained during a Coroner's post-mortem and the Coroner had finished with it, then rather than destroying it, it would perhaps be better to retain it and try and get some good from it.
Q. You say that is the view. Here is Professor Knight, who was himself a pathologist, saying the opposite?
A. I think - no, I do not think so, because the word "retention" to us at least, and I appreciate that pathologists live in their own world, but to us retention is the matter of holding something back from the body and allowing it to be closed and returned to the relatives. That is what we mean by retention.' [41]
- In seeking to clarify Professor Berry's understanding and interpretation
of Professor Knight's article, the following exchange took place between
the Panel, Professor Berry and Leading Counsel:
Q. (from the Panel) Do I take it that Professor Berry is really saying that the word "retention" in the sixth line could, in layman's language, be described as the initial taking?
A. That is how I think pathologists understood it, sir.
Q. (from the Panel) Whether it was intended to be read that way, we can only find out if we ask Professor Knight.
Q. (from Leading Counsel) Yes. What I think, Professor Berry, you are telling us is the understanding that pathologists in general had, no doubt informed by your own reaction to the article?
A. Yes.' [42]
- Professor Berry told the Inquiry that he thought that Professor Knight
was not addressing the question of further retention of material removed
and initially retained pursuant to Rule 9, but the different question
of the removal and subsequent retention during the Coroner's post-mortem
of material other than that required to help to establish the cause
of death. Professor Berry told the Inquiry:
'I am not sure that pathologists at that time were fully aware that, during the course of a Coroner's post-mortem, you could only retain, initially or long-term, tissues for the purposes of establishing the diagnosis. It may be in the early 1980s pathologists might have been retaining [ie "removing" in Professor Berry's understanding] tissue over and above what was required for diagnosis, and I think that is what [Professor Knight] is warning us against in 1985.' [43]
- Dr Ashworth told the Inquiry that he understood of Professor Knight to be arguing that retention of material other than Rule 9 material was probably 'not illegal but that it may come under media scrutiny'. [44]
- Mr Burgess told the Inquiry that the Coroners' Society agreed with
the view that Professor Knight was referring essentially to the retention
of non-Rule 9 human material. Mr Burgess told the Inquiry that:
'although a post-mortem examination may offer the opportunity for wider research or investigation, the coroner has no power to authorise any such extension to the examination to be made, and those wishing to avail themselves of this opportunity will have to resort to consent under the Anatomy Act or Human Tissue Act.' [45]
- In October 1989, a Home Office circular was sent to all Coroners [46] advising them that no human material should be taken for teaching or research purposes when conducting a Coroner's post-mortem examination. In Bristol, Mr Hawkins, the then coroner, drew the circular to the attention of all the pathologists within his jurisdiction [47].
- Mr Robert Clifford told the Inquiry that the Home Office:
'reminded Coroners of the limitations on what might be done with material retained from a [Coroner's] post-mortem some years before as a result, obviously at that time of some complaints or information coming to our attention that the material was being retained for purposes which did not seem to be authorised under the legislation. But only since 1996 has the possibility of a problem in this area ... really come to our attention.' [48]
- The Inquiry was told by Mr Hugh Ross, current Chief Executive of
the UBHT, that:
'different Coroners interpret their responsibilities in different ways. Some leave it to the discretion of the pathologist to retain tissues if they wish, others are more specific.' [49]
Retention of human material as part of Coroners' post-mortems
- Professor MacSween of the Royal College of Pathologists in his statement
told the Inquiry that:
'Coroners are now trying to address this sensitive issue. Until recently, very few [Coroners] informed relatives that organs had been retained. Indeed, many Coroners instructed pathologists to make no mention of such retention in the report which the relatives might receive. This policy has now been overturned in most jurisdictions. The Coroner is told by the pathologist immediately after the autopsy that a heart or brain has been retained. A letter is despatched forthwith to the relatives informing them of the fact and offering them the right to re-possess those organs when the enquiries have been concluded.' [50]
Disposal of human material
- Professor MacSween's evidence on behalf of the Royal College of Pathologists
was that, as regards Coroners' post-mortems:
'the Pathologist must retain any tissue, organ or fluid which in his opinion might have a bearing on the cause of death ... What is unclear is for how long those tissues should be kept and what their ultimate disposal should be. Coronial practice varies widely. The vast majority of Coroners take the view that, once their enquiries are concluded, the disposal of tissue is a matter for the pathologists and for their departments.' [51]
- There has been little, if any, guidance on the disposal of retained
human material. As regards Coroners' post-mortems, Mr Clifford of the
Home Office has stated:
'our perception is that the coroners generally do leave the arrangements for disposal to the pathologist. Again, we understand that how long or whether they lay down specific lengths of time for the material to be retained does vary, but we have no information as to whether there is a majority view of any particular length of time.' [52]
- Professor Green stated that Coroners
'can tell you for how long you can keep it, but they tend not to tell you that you must dispose of it, or there is no disposal order. You are ordered to keep it, but disposal is left to the discretion of the pathologist.' [53]
- In relation to hospital post-mortems, there was very little guidance
throughout the period of the Inquiry's terms of reference on disposal
of human material. In Professor Berry's 1989 Code of Practice for
Retention of Post-Mortem Tissue, it states that 'in all cases where
tissue is retained, the minimum required for diagnosis should be kept
and disposed of as soon as possible.' [54]
No mode of preferred disposal was mentioned. The revised version of
this code in 1998 was more prescriptive in its recommendations about
disposal.
Hospital post-mortems and consent forms [55]
- It was standard practice at Bristol, and nationally, to seek consent
by recourse to consent forms before a hospital post-mortem was carried
out. The Inquiry received evidence [56]
that, both in Bristol and elsewhere, the consent forms for hospital
post-mortems:
'varied widely, and we are not aware of any central direction which specified their design or content.'
- The Inquiry contacted the other hospitals that were designated as supra regional neonatal and infant cardiac surgery centres during the period with which the Inquiry is concerned and asked for samples of the consent forms for hospital post-mortems that were in use between 1984 and 1995.
- The practice varied. Examples of the responses received by the Inquiry follow.
- At Guy's Hospital in London (part of the Guy's and St. Thomas' Hospital
Trust) the hospital post-mortem 'consent' form in use in the period
1984-1995 stated:
'I understand that this examination is carried out:
1. to verify the cause of death and study the effects of treatment;
2. to further the advancement of medical education, research and treatment.
I understand that tissue, organs, bones and eyes may be retained for the purposes set out in 1 and 2 above.' [57]
- At the Killingbeck Hospital, Leeds (now part of the Leeds Teaching
Hospitals, an NHS Trust), the form in use during the period of the Inquiry's
terms of reference
'I understand that this examination is carried out...
to remove amounts of tissue for the treatment of other patients and for medical education and research.' [58]
- There is no express reference to 'whole organs' and no opportunity for parents or next of kin to express an objection to a full-scale post-mortem while agreeing to a more limited post-mortem.
- Mr David Moss, the present chief executive at the Southampton University
Hospitals NHS Trust, told the Inquiry that:
'the standard practice world wide during the period of 1984 to 1995 did not include consent forms for the retainment [sic] of tissue or organs. During this time parents were not asked to consent to such procedures.' [59]
- The consent form now in use at Southampton is very detailed and allows
for limited and full post-mortem examination, and removal of human material
for treatment of other patients, for medical education and for research
purposes. It also allows for the hospital to retain the human material
for an indefinite period or for long enough:
'to establish the medical causes of death after which time they will be decently disposed of by the hospital/medical school.' [60]
- The form in use at the Royal Brompton Hospital (now the Royal Brompton and Harefield NHS Trust) in the early part of the period of the Inquiry's terms of reference was similar to that at Killingbeck. In the later part of the period, the Brompton's form also made reference to human material being retained for genetic research'. [61]
- Alder Hey Children's Hospital, Liverpool (now part of the Royal Liverpool
Hospitals NHS Trust), also had a form that was similar to that used
at Killingbeck. Ms Karen England, the director of operational services
at Alder Hey, told the Inquiry that:
'the specific issue about retained tissues was probably not discussed in detail, if at all. It was assumed at that time that consent for [hospital] post-mortem included consent for retention of tissue....and that also included retention of organs for teaching, research and education purposes.' [62]
In a report into the status of retained organs at Alder Hey in 1999, Mr S J Gould, consultant paediatric pathologist, the John Radcliffe Hospital, Oxford, stated:
'Over this last five years, however, there has been growing recognition (in paediatric practice) that parents may not have considered that consent granted for tissue retention included consent for organ retention.' [63]
- At the Royal Victoria Infirmary (now part of Newcastle upon Tyne
Hospitals NHS Trust), a form introduced in January 1998 gives parents
the opportunity to decline to give consent to retention of organs rather
than tissue and retention of tissue for research. The form states that:
'this examination...
a. may involve keeping whole organs for laboratory tests;
b. may involve keeping tissue samples for research.' [64]
Prior to this, the form only referred to 'retention of tissues for teaching and research' and did not specifically use the word organ.
- The Chief Executive of Great Ormond Street Hospital, referring to
the current consent form introduced in 1992, wrote to the Inquiry that:
'it was common practice for tissue and organs to be retained without seeking permission of the next of kin both for hospital and Coroners' post-mortems. Whilst we recognise the clear need to seek proper consent from the next of kin ... there is a danger that retention is seen as some kind of unpleasant curiosity rather than in its proper legitimate and scientific context.' [65]
The decline during the period 1984 to 1995 in the number of hospital post-mortems as opposed to Coroners' post-mortems
- The Inquiry heard evidence that the number of hospital post-mortems
has declined in recent years. Professor MacSween said:
'Over the years the permission autopsy has fallen into decline. In many hospitals, very few permission autopsies are carried out. There seems to be an increasing reluctance amongst the medical profession to request them, and an increasing reluctance amongst the population at large to give permission. Even in teaching hospitals, the incidence of so-called permission cases is now frequently less than ten per cent of the autopsy load.' [66]
- One explanation for the decline in the number of hospital post-mortems
put forward to the Inquiry related to clinicians' communication skills.
According to Mr Burgess:
'[clinicians'] skills in that direction are not as good, maybe, or as persuasive as they should be. Maybe they do not even try. I do not think that I have heard it from relatives that if they had been asked in a particular way then they would certainly have agreed, but if the request is not made in the first place, then they are not given the opportunity of agreeing.' [67]
- Mrs Diane Kennington, Patient Affairs Officer (PAO) at the Bristol
Royal Infirmary (BRI) also noted that there are now fewer hospital post-mortems
than when she started her present job in 1983. She thought there were
several reasons for this: [68]
'One of them is that I feel that the junior house officers are not really given enough training in dealing with bereaved people.'
She suggested a further reason for the decline:
'we have now taken on responsibility at the BRI, since the city mortuary closed, for more Coroners' cases, and that means that they take precedence over hospital post-mortems.' [69]
- Mrs Kennington's first point, on lack of training, was reflected
in the evidence from the other supra-regional centres. Mr Mark Taylor,
the current chief executive of the Royal Brompton & Harefield NHS
Trust, told the Inquiry that:
'no formal training was given for [the consent-taking] procedure.' [70]
- Mrs Kennington gave evidence that she was given no guidance as to what she should or should not say to relatives of the deceased when going through the consent form with them. [71]
Hospital post-mortems
Footnotes
2 T42 p. 56 [Return to text]
3 T42 p. 57 [Return to text]
4 T42 p. 63 [Return to text]
5 The 1990s [Return to text]
6 T42 p. 57 [Return to text]
7 T43 p. 12-13 [Return to text]
8 WIT 0039 0014 [Return to text]
9 T55 p. 140 [Return to text]
10 WIT 0084 0105 [Return to text]
11 T43 p. 33 [Return to text]
12 T55 p. 110 [Return to text]
13 T45 p. 109 [Return to text]
14 His letter to the Inquiry of 25 January 2000, WIT 0546 0001 [Return to text]
15 T45 p. 104-106 [Return to text]
16 T45 p. 108 [Return to text]
17 WIT 0546 0001 [Return to text]
18 WIT 0204 0024 [Return to text]
19 T55 p. 59 [Return to text]
20 T55 p. 141 [Return to text]
21 T55 p. 55 [Return to text]
22 T2 p. 109, Michael Parsons, father of Mia [Return to text]
23 WIT 0054 0026 [Return to text]
24 T45 p. 100-1, emphasis added [Return to text]
25 T42 p. 72-3 [Return to text]
26 T45 p. 102, emphasis added [Return to text]
27 T55 p. 66-7 [Return to text]
28 WIT 54/978 [Return to text]
29 T 42 p. 85-6 [Return to text]
30 T42 p. 82-3 [Return to text]
31 T55 p. 68 [Return to text]
32 T54 p. 72-3 [Return to text]
33 T42 p. 80-1, emphasis added [Return to text]
34 Refer to Annex B [Return to text]
35 WIT 0204 0009 [Return to text]
36 WIT 0043 0119 [Return to text]
37 WIT 0043 0118 [Return to text]
38 WIT 0043 0124 [Return to text]
39 Knight, Professor B H 'Legal considerations in the retention of post-mortem material', Bulletin of the Royal College of Pathologists 1985; 52:3-4 [Return to text]
40 UBHT 0308 0001 [Return to text]
41 T 55, p. 75-7 [Return to text]
42 T55 p. 79 [Return to text]
43 T55 p. 77 [Return to text]
44 T54 p. 74 [Return to text]
45 WIT 0039 0014, Mr Burgess, emphasis added [Return to text]
46 WIT 0043 0153 [Return to text]
47 WIT 0348 0007 [Return to text]
48 T42 p. 113, Mr Robert Clifford, Head of the Coroners Section of the Animals, Bye laws and Coroners Unit at the Home Office [Return to text]
49 WIT 0054 0029 [Return to text]
50 T37 p. 25 [Return to text]
51 WIT 0054 0029 [Return to text]
52 T42 p. 117 [Return to text]
53 T42 p. 96 [Return to text]
54 WIT 0204 0034 [Return to text]
55 As mentioned above, the 1961 Act does not use the language of consent; but speaks of 'the person lawfully in possession of the body' ...'may give authority' for the removal of body parts after making 'such reasonable enquiry as may be practicable' with a view to ascertaining whether any relative 'objects' (section 1(2)) [Return to text]
56 From Professor MacSween WIT 0054 0027 [Return to text]
57 HOME 0007 0017 [Return to text]
58 HOME 0007 0032 [Return to text]
59 HOME 0007 0033 [Return to text]
60 HOME 0007 0034 [Return to text]
61 HOME 0007 0013 [Return to text]
62 HOME 0007 0025 [Return to text]
63 Gould, Dr SJ, 'Internal Inquiry Into the Retention of Organs at the Royal Liverpool Children's NHS Trust'. 20 December 1999 p. 13 [Return to text]
64 HOME 0007 0024 [Return to text]
65 Mr Robert Creighton, Chief Executive of the Great Ormond Street Hospital for Children NHS Trust, HOME 0007 0002 [Return to text]
66 WIT 0054 0027 [Return to text]
67 T43 p. 49 [Return to text]
68 T43 p. 93 [Return to text]
69 T43 p. 94 [Return to text]
70 HOME 0007 0004 [Return to text]
71 T43 p. 103 [Return to text]