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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 III: The parents' experience
Whether hospital post-mortems were carried out
with 'consent'
The parents' understanding of post-mortem and
its necessity
How parents were approached concerning post-mortems
Witnesses' suggestions for the future
Did practice at UBHT differ from practice elsewhere?
Changes to the practice at UBHT
- A number of parents of children who died following heart surgery
at Bristol suggested that they had not given consent to a post-mortem.
[153] Plainly, if a hospital
post-mortem was carried out without consent (or, more accurately after
establishing that the parents did not object), this would be a very
serious matter. Lack of appropriate consent would raise important concerns.
The Inquiry therefore looked into the matter in considerable detail.
On day 55 of the Inquiry hearings, Leading Counsel to the Inquiry reported
the results of the Inquiry's investigations to the panel. He said:
'Professor Berry has a database of post-mortems which were performed in his pathology department which covers the Bristol Children's Hospital and St Michael's Hospital. There are 265 names on his list in relation to children who died following heart surgery or from a heart condition in the period 1984 to 1995. That is 265 names. Of those 265 cases that came to post-mortem, 45 were hospital post-mortems, and as we know from evidence we have already taken, hospital post-mortems require written consent before they may be performed. [154] The remaining 220 cases were Coroners' post-mortems which do not require, legally, any consent from any relative for their taking place. So, in percentage terms, 83 per cent of the cases that came to post-mortem were Coroners' post-mortems. That list does not include a further four cases of post-mortems which were performed at the Bristol Royal Infirmary rather than in Professor Berry's paediatric pathology department. He has assisted in the tracing of those four cases. They were all Coroners' post-mortems.
Of the 45 which required written consent, in all but four of those cases we have been able to locate either the original signed consent form or a copy of it, or a reference in contemporaneous documentation to written consent having been given. It is quite plain - and I shall come back to this - that the best recollection of a number of parents is faulty in that when they thought, on reflection, they had not given consent, in fact they had. Of those four cases, we know - and I am not at liberty, for the reasons that I have given, to reveal the name of the patient concerned - that in one case although there is an absence of any written record of consent, consent was in fact given because the parent has told us that she asked for a post-mortem to be conducted.
The other three are cases in which there has been no suggestion from the parent or parents concerned that they did not consent. There is a double negative there, but it has to be put that way. There is, therefore, no evidence that there was a lack of consent or evidence that there was any objection by the parents concerned. There is positive evidence (at the moment in written form) from Professor Berry - and he will answer to this later today - that in every case in which he conducted a post-mortem, there was consent. We heard yesterday from Dr Ashworth that his practice was never to conduct a post-mortem without being assured to his satisfaction that there was written consent. Dr Russell, I think, in addition, in his statement confirms that position.
So the evidence before the Inquiry, in the absence of any contrary evidence from those three parents, is that consent was obtained [in those three cases], even although there is no documentary record of it.
... the evidence presently before the Inquiry is that, in every case in which there was a post-mortem, there was a consent for the post-mortem. I should emphasise that I say nothing about the position in respect of the retention of tissue following a Coroner's post-mortem, which has already been the subject of some evidence, and nothing that I say is intended to suggest that there was consent in any written form for any such retention. Whether it was required or not is a matter which you will, I know, later be considering, and have been considering this week.
The matter I said I would come back to is one of comment and therefore for you to make and assess and not for me to suggest, save that it is a matter for you to conclude, Panel, whether or not the fact (as it is) that a considerable number of parents did not think that they had been asked for nor had given consent to post-mortem when as it happens they had, says something about the process; whether it may suggest that the process was carried out at a time when inevitably concerns and thoughts and feelings were elsewhere, making it difficult to comprehend everything that was happening; whether it may be a reflection of any inadequacy - and if so, it will be a matter for you to identify - in the way in which parents were approached and told of the requirement and what it involved; and whether or not it might imply any need for written information or for a follow-up, counselling or informative service, or conversation, so that parents are aware of the sensitive issues. Nor does it necessarily resolve any question of whether or not the parent concerned had full information as to the length of time; nor whether they had a full description of the purposes for which any tissue or organ was retained.'
The parents' understanding of post-mortem and its necessity
- Professor Berry said:
'It has become clear that there is a great range in what parents understand about the post-mortem examination, and this challenges us to increase the public's general knowledge about what post-mortem examination involves, and the contribution of post-mortem examination to health care. Some parents are naturally upset at what post-mortem examination involves and choose not to receive further information.It is important to respect their right not to know as well as their right to know.Their comments re-emphasise the need for very sensitive and careful explanationto parents at the time of their bereavement whether post-mortem permission isbeing sought from them or HM Coroner directs the examination.' [155]
Further,
'I think now our view would change and we would perhaps enter into a dialogue with parents to see what their wishes were and if they were prepared to delay the funeral, perhaps by a day or so, we would accelerate the examination of the heart so it could be returned to the body.' [156]
- In relation to the amount of time required to fix a heart for the
purposes of a post-mortem, Professor Green said:
'To fix a heart in formalin takes 10 days. There is experiment now with microwave fixation techniques but this can only be used on relatively small organs and it is not, in my view, anywhere near as satisfactory as conventional formalin fixation.' [157]
Professor Berry stated that, whilst pathologists are trying to reduce the period of fixation by use of microwave fixation, it was
'not my practice at that time [1984-1995] and was not a practice that is used in the United Kingdom, so far as I know.' [158]
- The parents who gave evidence to the Inquiry, written and oral, presented a diverse range of views of their experience in relation to the retention of human material and post-mortems generally.
- The emotions experienced range from anger:
'I remained adamant that her organs should not be available for donation, so why did they assume they could donate her organs to the hospital for medical audit and training? I feel that the staff of the BRI let me down even after my daughter's death. They have now left me with the horrible task of burying my daughter (or, at least, parts of her) again.' [159] Diana Hill, mother of Jessica.
- To shock:
'If they had asked us whether they could have retained Lewis's heart for whatever reason we would have said no because we believe that the heart is the soul of the person.' [160 ]Janice Wilcox, mother of Lewis.
- To bewilderment:
'I could not accept that I had not buried Joseph whole, nor that his organs would have been taken without our consent. What makes their action even more baffling is that we actually offered Joseph's organs for transplant after he died but were told that they would not be of any use.' [161] Angela Good, mother of Joseph.
- To a feeling of loss of control:
'The worst aspect, I mean, it is an awful trauma having Bethan operated on. The one thing as a father one enjoys is having the sense of control over your child's life, but then with the operation, you lose that control, but then to further lose that control after death in this way, it is so upsetting.' [162] Paul Bradley, father of Bethan.
- To perceptions of a lack of sensitivity from clinicians:
'If only people had been honest and open with parents. I realise that doctors have to be trained and only see organs as specimens. The distress which we have all felt could have been alleviated by treating parents and patients as human beings rather than an extension of specimens.' [163] Brenda Rex, mother of Steven.
- To acceptance:
'While I was in the waiting room, someone asked if they could do a post-mortem and I agreed. I thought that, as there was nothing that could be done for Scott, I might as well try and help others. I was not asked about donation or about organ retention.' [164] Josephine Player, mother of Scott.
- The Inquiry received little evidence from parents whose child died
but did not undergo a post-mortem. Mr Malcolm Curnow, father of Verity,
was one such parent. Without being asked, he refused permission for
a hospital post-mortem. He said:
'As a police officer, as you are well aware, I have attended, as many police officers do, a whole series of post-mortems, and I am more than well aware of what is entailed in them. I did not want to think that my daughter would have to undergo that procedure, and as a result of that, I made it absolutely and abundantly clear to the staff at the hospital upon her death that there was no post-mortem to be carried out, and I made that clear and abundant, and the reasons were given why I did not want it carried out. It is for that reason that I believe that the post-mortem was not carried out.' [165]
- Coroners' post-mortems were very common in the cases (where death resulted) within the Inquiry's terms of reference, because death often occurred during or shortly after surgery.
- The Inquiry heard that the post-mortem report would not highlight the fact that human material had been retained, nor that it might be put to other uses later, such as teaching or research. Thus, many parents remained unaware.
- Parents gave evidence of the conversations with clinicians or hospital
staff when a Coroner's post-mortem was to be carried out. For example:
'I never gave permission for a post-mortem, I was simply told that one would happen.' [166] Moira Haggerty, mother of Matthew.
'The Hospital told us that there would be a post-mortem as this was the usual practice and we were sent the results of the post-mortem. On the subject of organ retention, this was not addressed at the time.' [167] Erica Pottage, mother of Thomas.
'We are not surprised that a post-mortem was carried out following Jessica's death but we do not remember anyone specifically discussing this with us and informing us that one would take place.' [168] Josephine Feloy, mother of Jessica.
- In some situations, parents were told, accurately and clearly, that
they had no choice about whether a Coroner's post-mortem was carried
out. For example:
'They said he had to have a [Coroner's] post-mortem because he died in the theatre. They wanted to find out if the doctor did his job right, so they had no choice ... so he [her husband] signed it.' [169] Ellen Sheridan, mother of John.
'The lady told me that, if I tried to stop the post-mortem, I would not be able to bury Brydie for about six weeks, and that even then, the post-mortem would still be done. We agreed, very reluctantly, but did not sign anything. No mention was made of any possibility that some or all of Brydie's organs might be retained after the post-mortem.' [170] Jacqueline Rathbone, mother of Brydie Kinsman.
'I think it was the next day, 13 May, that a male charge nurse spoke to us about a post-mortem examination. We said that we did not want there to be one, but he said that it was a legal requirement, as Corinna had died shortly after surgery. When we were told this, we agreed. We felt we had no alternative, in any event.' [171] Sharon Tarantino, mother of Corinna.
- One of the main causes of parents' anger and anguish was the fact
that, as they saw it, they were 'kept in the dark' about the 'usual
practice' of retention of Rule 9 human material after a Coroner's post-mortem.
The following gives a flavour of a common theme of parents' evidence:
'I know for a fact that if many of the families had had their consent sought and had it explained to them that the conclusion of a post-mortem and the retention of their child's heart for research would have assisted the saving of a life they may well have agreed.' [172] Michaela Willis, mother of Daniel and chair of the BHCAG.
'I think the most important thing is that we were not asked at the time. I am a reasonable person and I am quite sure we would have said yes ... But I know I felt if another baby could be helped by the retention and if that was the reason, then we would have said yes, but the fact that they were kept without our knowledge and presumably we were never ever going to be informed, came as a very, very big shock.' [173] Susan Francombe, mother of Rebecca.
'We were quite keen that Kate's organs should be used for transplant purposes, and I suspect that, had we been asked, we would not have minded her organs being used for educational purposes. We did not know, however, and it came as a terrible shock to me to learn that some of her organs were retained.' [174] Lynne Lloyd, mother of Kate.
'I think they should have told us, but the fact that they did not does not surprise me ... I do not think that they have any right to take tissue from a baby without the parents knowing, whether their baby has died under special circumstances or not. If the parents have not got the right to know, then who has?' [175] Douglas Bwye, father of Jason.
'We were specifically asked for our consent to the retention of Naomi's heart and we said no. Regardless of our decision the hospital retained not only Naomi's heart but part of her lungs as well. I can appreciate the need to retain tissue specimens but can see no reason to retain entire organs for such a long period of time.' [176] Nigel Dymond, father of Naomi.
How parents were approached concerning post-mortems
- There was evidence that the timing and location of the conversation
concerning post-mortem examination are important. Compare the following:
'I mean, we had literally come out of ITU and got back into this family room, I mean, a matter of minutes, five minutes at the outside, and there was this junior doctor suggesting that we should agree to a post-mortem. This had never been raised with us.' [177] Linda Burton, mother of David.
'While we were at the Laboratory the doctor on duty there said that he had received a call from Bristol Children's Hospital and they had asked him to ask me if we would consent to the removal of Aaron's heart for research purposes. The timing of this request I thought was inappropriate. At this time I thought that Aaron had been through enough.' [178] Philip Davies, father of Aaron.
- The difficulty in assessing how and when parents were to be approached
to discuss post-mortems is most clearly illustrated by the responses
of two parents who gave evidence to the Inquiry. Paul Bradley, father
of Bethan, felt that such a discussion should take place well before
any surgery. He said:
'If they had asked us [about a post-mortem] the night before Bethan's operation, and also after her death, I would have said - well, first of all, before the operation, I would have been affronted that they would have been seemingly dismissive, even before the operation, that she was going to die, so I would not have liked that. That is why I feel that well before the operation, when one is in a sober mind, it is far better to approach that. But then after the operation, I would have found that difficult and I would have said no, but I do consider that well before we would have been in such a mind, in such a sensible mind, to have thought, yes, it would be a good thing if, in the enforced event of death, for some good to be achieved.' [179]
- Sharon Tarantino, mother of Corinna, on the other hand, would have
found such an early approach distressing as the following passage of
evidence indicates:
'Q. At the time of her death, as any parent would be, you were terribly upset?
A. Yes.
Q. Would that have been the right time to mention [a post-mortem examination] or would it have had to have been a bit later?
A. Before she was buried. I mean, it would have to have been quite soon after the death, but I think it is better to ask then than to come this far down the line and find out, and then you have to go through a funeral again.
Q. We heard the suggestion again from Mr Bradley this morning that it might be sensible to discuss the possibility, when difficult surgery is contemplated, some time in advance - not the night before, for obvious reasons, but some time before - that if, God forbid, the worst should happen, a post-mortem might have to be arranged and tissues might be kept. What do you think of that? Would that have upset you very much in advance, to have that sort of discussion?
A. Yes. Definitely before an operation.
Q. So your reaction is that that would not be helpful to you?
A. No, not to me personally, no.' [180]
- A variety of reactions were expressed by parents, on the preferred
way or timing of raising the question of a post-mortem. Medical staff
were left to strike the delicate balance between knowing what to discuss
with parents and when to discuss these matters with understanding, when
parents wish to be left alone to grieve.
Witnesses' suggestions for the future
- Several witnesses offered suggestions on what and how parents should
expect to be told, or not told, in the event of a post-mortem. For example:
'I think the more channels of communication you use to inform one the better the information is going to be received, understood. Somebody mentioned a video earlier, book, diagram, face-to-face contact, to reinforce one another. There is no ideal method, you need to have them all.' [181] Jonathan Mallone, father of Josina Millers.
'I would expect to be told that, in the case of a Coroner's post-mortem, where I have no say in what happens, I expect to be told that that is the case and what powers the Coroner has and that it may well be that they retain a heart or brain or every organ in the body, but to be told that that is a possibility and then, if it is going to happen, to be told that it is going to happen.' [182] Helen Rickard, mother of Samantha.
'It was explained to me that he would not be able to come back quickly because of the circumstances of the death, that somebody would have to look into it, which I assumed that is what they meant, the post-mortem. So that was fine, we understood that, that things had to happen before he could come back.' [183] Douglas Bwye, father of Jason.
- Dr Ashworth gave his professional opinion, as a pathologist, of what
information fellow clinicians ought to impart to parents prior to a
hospital post-mortem:
'I would expect the clinician to explain the reasons for the requesting of the post-mortem in the first place; the benefits that it might confer; and to give in very general terms what would happen, in other words, organs would be removed, the cavities would be inspected and the body would be sewn up afterwards in a proper manner.' [184]
- Professor Berry's view was:
'Hospital post-mortem examinations, I think when parents are asked for consent, it should be specified if we wish to retain whole organs ... we should be more specific about the purpose for which they are going to be retained ... when parents give consent to autopsy, the question of retention of whole organs is specifically addressed with them ... They also need to be told about the possible ways, the choices they have as to what should happen to the tissue at the end of the period of retention they elect for.' [185]
- Professor MacSween, again referring to hospital post-mortems, told
the Inquiry that it was:
'important that in future consent for autopsy forms should incorporate a specific and separate block for completion where there is an intention to retain an organ. The purpose for that retention should also be made clear to the relatives ... The person talking to the relatives should make clear - and this has always been taught - that bodies are handled reverently.' [186]
- As Professor Green, addressing the issue of retaining human material
for the purpose of research, said:
'The profession is anticipating that outside scrutiny by a neutral body like an ethical committee is now essential, whereas at one time everybody said...the clinicians must go to the REC [Research Ethics Committee], pathologists do not need to. I think we are anticipating public concern and responding to it before that concern is generally raised.' [187]
Did practice at UBHT differ from practice elsewhere?
- According to Mr Ross, the practice at UBHT was no different from
other Trusts in the NHS:
'I know that large quantities, large numbers of organs and other tissues have been retained over the years and the degree of knowledge that parents and relatives have had about that, I think, has been partial, to say the least. So I do not think the Bristol practice was different... rightly or wrongly, but I do not think the Bristol practice was different from practice elsewhere.' [188]
Recent information about the practice of other Trusts and, previously, health authorities, bears out Mr Ross's evidence. [189]
- Professor Berry tried several times to change the practice at UBHT. In writing, as he did, to the clinicians advising that hearts would no longer be retained after Coroners' post-mortems unless there was a note from the doctor in the medical records stating that the issue had been discussed with the parents and that consent had been obtained, [190] he was going beyond what was normally considered necessary by the medical profession generally and pathologists in particular at that time.
- As Professor Berry said:
'In about 1990-1, I became concerned that legal justification was insufficient for the retention of some tissues. These concerns arose from speaking to parents, and from occasional cases widely publicised in the press. At about this time I wrote a departmental code of practice for the retention of tissue at post-mortem ... also at this time I raised this issue with our paediatric cardiologists and cardiac surgeons, and reminded them that hearts could only be retained for diagnosis under the Coroner's Rules, and that I thought they should be telling parents that hearts were generally kept.' [191]
Changes to the practice at UBHT
- Mr Ross, in his evidence to the Inquiry, stated that several changes
to practice at UBHT were planned. These may be summarised thus:
a) professional development and training sessions for medical staff who request consent;
b) development of a Trust-wide code of practice;
c) changing the BRI hospital post-mortem consent form to that used at the BRHSC/St Michaels;
d) producing an information leaflet for relatives; and
e) contacting the coroner with a view to developing a leaflet on Coroners' post-mortems.
- Refering to recent practice, Professor Peter Fleming, Head of Division
of Child Health, department of clinical medicine, University of Bristol,
told the inquiry that:
'For the past four years, routine practice has been to retain samples of tissue, rather than whole organs, unless specific consent has been sought and given by the parents, and the need for retention of a whole organ explained to them.' [192]
- The UBHT has encouraged a more pro-active relationship with the Coroner
so that:
'if the relatives do have particular objections or particular worries, ... the Coroner has it within his or her power to take those on board and to adjust or alter their decision about what instructions they give to the pathologist about perhaps even the undertaking of a post-mortem, but even more particularly about whether organ tissue should be retained or not.' [193]
Professor Berry said that the practice now is:
'to ask the Coroner's officer or the general practitioner or somebody to tell parents if we have retained a whole organ, so we can follow their wishes as to what should happen.' [194]
And in relation to hospital post-mortems specific requests about the examination and how it is carried out and what parts of the body are examined:
'are becoming increasingly common within the context of hospital consent post-mortems, and we always accede to those requests, but also explaining to parents that we may not be able to answer some of their questions later if we are not able to carry out a complete examination.' [195]
- On 25 February 1999, Ms Lindsey Scott, UBHT director of nursing,
issued 'Staff guidance on post mortem examinations'. This was intended
to help junior medical and nursing staff to discuss post-mortem examination
with families. (The reference to junior staff has already been commented
upon.) It detailed what information should be given to relatives. However,
it did not discuss the retention of human material except to say as
its final two points:
- if organs or tissues are retained, this is usually for a short period of time to enable further tests to be carried out. Tissue or organs may be kept for a more extended period of time for teaching purposes.
- retained organs or tissue are disposed of by incineration, according to national guidelines.' [196]
Whether hospital post-mortems were carried out with 'consent'
Footnotes
153 As already noted, the 1961 Human Tissue Act (the 1961 Act) does not use the language of consent, but refers to giving authorisation after such reasonable enquiries as may be practicable have been carried out to ascertain whether any relative objects [Return to text]
154 Here Leading Counsel to the Inquiry was describing the practice in Bristol [Return to text]
155 WIT 0204 0050 [Return to text]
156 T55 p. 61 [Return to text]
157 T42 p. 51 [Return to text]
158 T55 p. 58 [Return to text]
159 WIT 0263 0016 [Return to text]
160 WIT 0509 0009 [Return to text]
161 WIT 0460 0012 [Return to text]
162 T53 p. 45 [Return to text]
163 T53 p. 107 [Return to text]
164 WIT 0258 0007 [Return to text]
165 T3 p. 75 [Return to text]
166 WIT 0364 0010 [Return to text]
167 WIT 0260 0005 [Return to text]
168 WIT 0311 0007 [Return to text]
169 T4 p. 146 [Return to text]
170 WIT 0433 0015 [Return to text]
171 WIT 0223 0014-15 [Return to text]
172 WIT 0221 0001 [Return to text]
173 T68 p. 24 [Return to text]
174 WIT 0225 0011 [Return to text]
175 T6 p. 44 [Return to text]
176 WIT 0310 0014-5 [Return to text]
177 T5 p. 43 [Return to text]
178 WIT 0475 0009 [Return to text]
179 T53 p. 46 [Return to text]
180 T53 p. 74 [Return to text]
181 T95 p. 203 [Return to text]
182 T52 p. 164 [Return to text]
183 T6 p. 41-2 [Return to text]
184 T54 p. 26 [Return to text]
185 T55 p. 151 [Return to text]
186 WIT 0054 0030 [Return to text]
187 T42 p. 88 [Return to text]
188 T37 p. 41 [Return to text]
189 See paras 17, 22-24. [Return to text]
190 UBHT 0308 0018 [Return to text]
191 UBHT 0308 0219 [Return to text]
192 WIT 0505 0004 [Return to text]
193 T37 p. 10-11 [Return to text]
194 T55 p. 153 [Return to text]
195 T55 p. 157 [Return to text]
196 WIT 0128 0034-5 [Return to text]