Annex A > Chapter 17 - Communication Between Healthcare Professionals and Patients > Expert evidence
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Expert evidence
44 Mr Leslie Hamilton, a consultant paediatric cardiac surgeon at Freeman Hospital, Newcastle, and one of the Inquiry's group of Experts, told the Inquiry:
`I think the move towards being much more explicit has been a more recent phenomenon and I would have put it in the 1990s. I have only been a consultant since 1991, so I can only speak from my own practice since then. It is only my perception that we felt we were protecting parents by not exposing them to all the worrying factors of what might happen, and that would have been the practice, I would have thought, in the 1980s.
`I think it is very important to state that every set of parents is different, and different parents will want different levels of information and different parents will take in different ideas during the consultation. I think there has been some work done, I think a figure of about 30 to 40 per cent of the information you give in a consultation is retained, because it is a very difficult and very traumatic time. So my own feeling is that the consent is a process; it is an ongoing process. I see that starting when I see the family in outpatients and I try in my practice to see them in outpatients in advance of the operation, when they were actually going on the waiting list. I see that as the actual point of consent.
`I think when they come into hospital the night before, I then do not go over all the details I have discussed in outpatients, because I think that is the last thing parents want to hear at a time of great anxiety.
`I would go even further. I think for me the final point of the consent process is actually after the operation. I like to see them again and make sure they have understood what I have actually done, how things have gone and what I would predict for the future, because, again, that is the last point at which I would see them because they would then go back to the care of the cardiologist. I do not think that is necessarily standard practice and I do not know if that is ideal practice.
`I think one of the difficulties we have in describing risks to parents is that we do not have a system of risk stratification for children's operations ... It is a very individualised thing. The idea of going back to results and quoting a specific figure I think is not possible. I try and give the parents a ball-park figure of whether it is a high, medium or low risk operation. Most parents will want you to put a figure on it so I will try and do that, but as I have said, I emphasise statistics do not apply to individuals, they apply to populations.' [60]
`I certainly will give what I feel are the important parts of the consultation initially, depending on the diagnosis, and I think it is important to say that "Your child may die", because unless you say "die" or "death", parents do not want to hear that, so they will try and push that aside, so I think it is important to say that but then to try to quantify it and give some idea of the level of risk.
`But then I will mention the fact ... that complications are relatively infrequent; it depends on the operation, but they can affect any part of the body. I will then give them the chance to ask questions and some parents will want to know every detail. They will ask specifically about brain damage, but I must admit, I do not go into specific detail unless they want me to. I try and be guided by them in their reaction to my conversation, as to how much they want.
`So this is a very difficult area. I do not think there is a clear answer, but I think things have changed dramatically since the 1980s and we are now much more explicit with parents.' [61]
46 Professor de Leval and Mr Jaroslav Stark (former consultant in paediatric cardiothoracic surgery), both of Great Ormond Street Hospital for Sick Children, gave expert evidence to the Inquiry in a joint session. Professor de Leval said `... I do not think that in the 1980s we were giving the parents the information you expect today.' [62] On the issue of information to be given to parents and discussion with parents about the fact that a surgical procedure like the Arterial Switch was new, Mr Stark told the Inquiry:
`... when you [Counsel to the Inquiry] say "when you discuss it with the parents", you actually are not asking the parents to make the decision, because I think, to some extent, the way you see the benefits, you are willingly or unwillingly influencing the parents. But the other way round, the parents sometimes influence you.
`I would like to give you an example. One of the very difficult conditions is pulmonary atresia, with major collaterals coming from the aorta.
`For this condition, although the outlook has improved, the usual scenario in the 1970s/80s was that we would do two, three, four palliations in the first three years. Eventually there was nothing to offer. So on those occasions when we told the parents this scenario and suggested, because the outlook is so bad, that perhaps we should not treat the child, of course very often the parents feel anything that could be done should be tried, and we did, and then the scenario was followed.
`Then, a few years later, the parents would write to me and say, "We are sorry we did not take your advice because the misery we have suffered during those three or four years was immense."
`So I think that there is always both sides that influence each other.' [63]
47 Speaking of the extent to which parents during the 1980s and 1990s would understand or be informed that their child was amongst the first to have a new (Switch) procedure, Professor de Leval told the Inquiry that:
`I think that the parents were informed that the procedure was new or that there was an alternative, but we were implying or proposing a new procedure, but I think all this was done in the context of a relationship of confidence between the families, the cardiologist first and the nursing staff, the surgeon, and I do not think that parents ever considered that they were probably the "victims" or "guinea pigs" or whatever you would call that. I think that they were, you know, as fully informed as we thought they should be, and we were totally open in what we were doing. The fact that we were telling them that it was a new procedure implied, without being necessarily specific in spelling it [out], that there was probably a higher risk in those days than now, because we have done more.
`But I think the relationship and the ambience where all those things were taking place was such that there was full confidence between parents and the institution.' [64]
48 Mr Stark, agreeing with Professor de Leval, said:
`I think this is a very important point, because I could give you an example of one operation which I thought could be done and it has not been done before, and when I talked to that family, I put it to them in those simple terms: "It has not been done before. I think it could work." The parents, and many other parents, in those days usually did not comprehend fully the anatomy of physiology, because ... it is quite complex. Very often the answer was, "We know that you will do your best and we trust you". So we went ahead with the operation. That particular operation went well, but the feeling that the nurses, cardiologists, surgeons had the full trust of the parents probably made the explanation, even under such difficult conditions when we started new operations or where we knew the risk was still high, somewhat easier.' [65]
49 As for quoting risks, Mr Stark said:
`I think very often we would quote the parents actually [a] very broad idea, like saying the risk is less than 50:50. Only when the parents insisted, we put together our own experience, we put together the data from the literature, but it was not scientific; I completely agree. Unfortunately, we did not have the basis for that.' [66]
50 Professor de Leval indicated that:
`Nowadays, obviously, we are careful what we say, what we write and we try to choose our words, but I think that, frankly, when I was talking to parents in 1985 about risks, I did not know exactly what my results were and certainly not what the confidence interval was, so it was a clinical impression of what I had done; also a knowledge of what had been published and what I had heard at meetings. Some of the conditions, the number of cases I had done, we had done, was very small, rare conditions, and the risk quoted was the best I thought I could do in terms of assessing what the risk was, plus taking into consideration my own performance from previous cases ... You tell the parents that three of the last four patients have died while all the others before had survived? We did not, but I am sure that when I was quoting a risk of an operation, having lost one or two patients from the same condition, I was more pessimistic. But this is no science. There was no confidence interval quoted.' [67]
51 Mr Stark told the Inquiry that he tried to avoid quoting percentages because he thought they were meaningless to a number of parents. He said he tried to explain what the alternatives of not operating were to the parents and mentioned that `even if the risk was 1 per cent ... if that 1 per cent was their child, therefore it was 100 per cent.' He said: `We did not have a better way to do it.' [68]
52 Dr Eric Silove, consultant paediatric cardiologist at Birmingham Children's Hospital and Senior Clinical Lecturer at the University of Birmingham and Dr Alan Houston, paediatric cardiologist at the Royal Hospital for Sick Children, Glasgow and Honorary Senior Lecturer at Glasgow University jointly gave expert evidence to the Inquiry.
53 They referred to the practice of holding `joint meetings' between surgeons and cardiologists. Dr Houston told the Inquiry:
`But of course the surgeon will have looked at the angiogram with you [the cardiologist]. The surgeon is not going in to see if the coronaries are all right; he will have looked at the pictures and probably agreed with the physicians and the surgeons that they are all right. So he would be involved in that decision to operate as well, yes.' [69]
54 In relation to the collaboration between cardiologists and surgeons, the following exchange took place:
`Q. You talked of the determination being made as it were by the cardiologist in isolation or by the surgeon, that they would collaborate and look at these things together. Is that an essential prerequisite for the proper treatment of a patient, that the two of them collaborate and discuss?
`A. (Dr Houston): I would have said so, for all but the most relatively minor conditions, and I think in all centres, there are joint meetings of the cardiologist and cardiac surgeons. Perhaps for some simple things like tying a duct, you would not necessarily sit down and look at the information, or even an Atrial Septal Defect, but anything like this would be expected to be discussed at a combined meeting.
`A. (Dr Silove): I agree with that.' [70]
55 Dr Silove and Dr Houston told the Inquiry about prevailing practice (in their experience) during the period covered by the Inquiry's Terms of Reference regarding information given to and communication with parents about old, new and emerging surgical procedures. In the following exchange, they discussed general practice at the time concerning quoting risks:
`A. (Dr Silove): I think it is very unlikely that cardiologists and surgeons at that time, sort of in the late 1980s, early 1990s, would have discussed the pros and cons in such depth with the parents. I think that today they would. In 1999 we know that there is a demand for a great deal of information, and some of that is good and some of it has major problems. But at that time - I cannot quite remember, but I suspect that one would have said to the parents, "We used to do an operation called the Atrial Switch", say, "and our results for that were good but we know that children who had that operation, over a period of years, sometimes as early as the age of -", I mean, I have talked about 20s and 30s, sometimes as early as 12 or 15, would die suddenly, would certainly get into big trouble as they got into their 20s, and would not have a normal life.
`"We are now adopting the Arterial Switch operation; we have not done enough of these operations to be able to tell you just what the outlook is going to be; we expect that the long-term outlook will be very much better; we have a much better chance of having a live child when he or she is an adult, and we are not quite certain what the mortality rate is that we can expect at this stage, but we would expect it to be probably a little bit higher than the mortality rate for the Atrial Switch."
`That is what I think, I cannot remember, I think is the way we would probably have approached it. I do not know whether Dr Houston might recall how he would have approached it?
`A. (Dr Houston): I think it perhaps would be very similar to that, but perhaps if you clearly believe what you are doing is the correct thing, you may put it a little more strongly than that ... I think it is difficult to say exactly what words you would use, but you would clearly get over the concept that you thought the chances were much better by going for the Switch rather than the inflow correction, but briefly mention that that had been done in the past.
`Q. (Mr Langstaff): Suppose that the parent says, or said to you at the time, "Well, what are the chances of my child coming through the operation, coming through this operation? How does that compare with the chances of my child coming through that operation?"
`Q. (The Chairman): And we are talking about two kinds of chances. The chances immediately and the chances long-term, so perhaps in addition to Mr Langstaff's question, you can address that as well, because Dr Houston, you used the word "chances"and of course it refers to two distinct time periods.
`A. (Dr Houston): I cannot recollect anyone about that time asking me that directly. Perhaps it is different nowadays, but people often do not push for the exact details. I am very wary about giving percentage figures, because everyone is different. But I think at that time you would have said the risk of the Switch was up to 20 per cent mortality. The risk with inflow would probably be five or less. That would have been the sort of figures I would have thought of at the time, I think.
`A. (Dr Silove): I think at the time that we moved over to the Arterial Switch, we would probably also have said that the experience of centres that are doing a lot of Arterial Switches is that the mortality is somewhere in the region of 10 per cent, whereas the mortality for the Atrial Switch operation is about half of that. But we feel that there are so many advantages to going for the Arterial Switch in the longer term, that is what we are advising.
`Q. (Mr Langstaff): If I can just ask you both really to comment on this ... we are here dealing with the risks and chances of survival or not, and using figures such as 10 per cent or 5 per cent.
`To what extent would they be meaningful to a parent or patient when the reality is that the parent has no choice but to have a child with a congenital heart defect, the child has no choice, it is born that way and when the reality is, it is either death or survival, and percentages can be very false and take one away from the fact that in each case there is a real child?
`A. (Dr Silove): Yes. I mean, the point you have made is a very real point. I think that what we are really saying is that if the mortality rate is less than 10 per cent, it is a reasonable risk, whereas if the mortality rate is 30 per cent, it is a very high risk. We really need to think twice about whether we would go in for an operation with a mortality rate of 30 per cent. ...
`A. (Dr Houston): All I can think of is myself when we started, I had a figure of 20 per cent from general results that people are talking about for the procedure. It is less now, but that was the figure, 1 in 5, I tend to prefer that to percentage, somehow, and then less than 1 in 20 for an inflow correction ...
`Q. (The Chairman): ... would it have been part ... of the habit or behaviour of cardiologists to say, "Well, we only do X, but if you go elsewhere, they do Y and as it happens, Y does have a greater chance of survival, albeit that there are problems later on down the road, as we understand them", so that the parent can weigh that in the balance as well. Would that have been a habit?
`A. (Dr Houston): I would have thought not, because you can talk about people not only in this country but elsewhere.
`A. (Dr Silove): I agree with Dr Houston there. When you are dealing with a large population of patients, you have to be practical in the sense that you cannot really think of transferring everybody, if they wish to be transferred, to some other place, because you have to go through the logistics of organising that, and the place that you might want to transfer them to might not be able to take them.
`Once you start trying to make those judgements in your own centre, it really becomes very difficult. You cannot just single out one or two conditions; you have to deal with every single condition that you see in the same way.
`A. (Dr Houston): I do not know when we are talking about ... We generally know who has good results now; would we have known them in the late 1980s?
`A. (Dr Silove): You probably would only have known by sort of word of mouth at the meetings of our professional associations. ...
`Q. (Mr Langstaff): We may not be talking here about good results, but alternative operations. That is certainly going to be known, is it not: who is still doing Mustards, who is still doing Sennings?
`A. (Dr Houston): I think if parents had said, "I want a Mustard" or "I want a Senning done", I think in most places it would have been discussed. No-one would refuse to do that for them but I think one might try to dissuade them and suggest the other alternative was the better, but if they wanted it, no-one would say "You are not getting this operation, you would have to go elsewhere." I do not think so. Would that be correct?
`A. (Dr Silove): I do not remember anyone saying that. ...
`Q. (The Chairman): ... One is really asking you as experts whether, in the late 1980s and early 1990s, it would have been perceived as part of your duty to tell the patient about other procedures elsewhere and the option of choosing X rather than Y.
`A. (Dr Houston): I would have thought not. Not in detail. Again, to mention that previously there was an operation which had better immediate results but poorer long-term ones.
`A. (Dr Silove): Let us take an extreme example. If I was in a centre where I knew that the mortality rate for a particular operation was, say, 50 per cent, and I knew that the same operation could be done with a mortality rate of, say, 10 per cent in one or two other centres in the country, I think I would tell the parents that. Supposing the mortality in my centre is 40 per cent, I would tell them that. If it is 30 per cent, I think I would still tell them that. But if it is 20 per cent, I am not so sure, because I do not know whether the mortality rate is going to stay at 20 per cent or come down to 10 per cent.' [71]
56 Dr Silove and Dr Houston discussed the practice of informing parents about the risk of morbidity and of quoting risks in the following exchange:
`A. (Dr Silove): ... it is very interesting how surgeons and cardiologists over the years have always talked in terms of mortality rates, and any papers that you look at in the literature refer to mortality rates. There is very little actually written about the incidence of brain damage and kidney damage and liver damage and all sorts of other problems that occur.
`I think that for every percentage mortality rate that one gives, one has to give a percentage of perhaps a half a per cent for a risk of neurological damage. That is something which many of us, as cardiologists and cardiac surgeons, have tended not to do in discussing operations or proposed operations with parents.
`Q. (Mrs Howard): If that question, however, was asked specifically of you, how, in your practice, would you have answered that?
`A. (Dr Silove): I would say, with any operation, not only is there a risk of death, but there is a risk of other problems. I mean, that is something I always have said, but I have never gone on to specify the problems.
`If they are asking me, "Is there a risk of brain damage?" I would have said, "Yes, there is a risk of brain damage. I cannot quantify precisely what the risk is", largely because I do not think I knew what the risk was at that stage. I think it is only in the last five years or so that people have been writing a little bit more about the incidence of brain damage following cardiac surgery, at least, in the papers I read. I do not know what Dr Houston feels?
`A. (Dr Houston): For a long time, in fact for as long as I can remember as a consultant we have been writing down, "Parents interviewed, warned of risks", no matter how minor the thing is, risk of death, brain or kidney damage, but it certainly has not been my practice to quote a sort of figure for risk of brain or kidney damage. If they asked me, what would I say, it would depend on what the condition was they [the surgeons] were operating on, clearly.' [72]
57 Professor de Leval and Dr Silove in their expert evidence told the Inquiry that cardiologists and cardiac surgeons (and others) worked as a team when proposing the Switch procedure to parents:
`A. (Dr Silove): ... the cardiologist would see the parents first, but the cardiologists and the surgeons will have discussed all of the ramifications in quite some detail before the cardiologist ever puts something to the parents.
`I am sure it is the cardiologist who would be the first to suggest to the parents, "We have discussed this problem and we feel that the right way to go forward is to go for the Arterial Switch operation". It then becomes a question of how it is dealt with in an individual institution, whether the parents see the surgeon or whether the cardiologist and the surgeon see the parents together, but the communication is terribly important ...
`It is a team consultation, it is a team decision and it is a team responsibility. I do not think the surgeon should take the flack for everything that goes wrong. I think the whole team is responsible for things going right or wrong.'
`A. (Professor de Leval): I fully agree with that ... every single patient operated on has been discussed once, twice or three times in great detail by at least two consultants, a surgeon and a cardiologist, but most of them by the junior staff, other consultants. If it is a difficult problem, we would repeat investigations. In the beginning we used to go back with the echocardiograms, repeat an angiogram, to find out where the coronary arteries were. Because the coronary artery was so crucial, sometimes we went ahead with a Switch and found different coronary arteries than expected and we had to back up to a Senning.
`So all these decisions were team decisions in which we all took responsibilities. I think this is that type of attitude, corporate attitude that was communicated to the parents, which I think, allowed us to work in an atmosphere of trust and confidence. I think it is absolutely vital. I do not think the parents have ever seen me, as a surgeon, as a single individual within the hospital. I have been always part of a team, and they knew when I talked to them that it was after discussing with others, it was the decision, which had been taking place at the conference.' [73]
58 Dr Michael Scallan (consultant anaesthetist at the Royal Brompton Hospital) gave expert evidence to the Inquiry. Dr Scallan, commenting on Dr Stephen Pryn's evidence, indicated that:
`A. It is not normally the practice for an anaesthetist to give a specific risk figure for paediatric heart surgery. The surgeon will quote a figure and, as he said, that covers the whole procedure which anaesthesia is upon.
`Q. Because the relative risk associated with anaesthesia is very small?
`A. That is true, but like so many things, this is evolving and it is becoming increasingly obvious that the details of the anaesthetic and the risk will probably have to be explained to parents and patients in far more detail in the future. It is not inconceivable that at some future date there may be a separate anaesthetic consent form as distinct from the surgical consent form. We are not yet at that point.' [74]
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Footnotes
[60] T51 p.128-130 Mr Hamilton
[62] T50 p.18 Professor de Leval
[64] T50 p.26-7 Professor de Leval
[67] T50 p.34 Professor de Leval
[70] T49 p.66-7 Dr Houston and Dr Silove. See Chapter 3 for an explanation of clinical terms
[71] T49 p.104-11 Dr Silove and Dr Houston. See Chapter 3 for an explanation of clinical terms
[72] T49 p.146-7 Dr Silove and Dr Houston
[73] T50 p.28-30 Dr Silove and Professor de Leval. See Chapter 3 for an explanation of clinical terms