Annex A > Chapter 17 - Communication Between Healthcare Professionals and Patients > Parents' suggestions for improvements
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Parents' suggestions for improvements
426 Paul Bradley told the Inquiry that a written diagnosis of the condition would be helpful as a point of reference so that it could be studied:
`At that time we did not think to ask for a written diagnosis, but with hindsight, we realise it would have been helpful because obviously they explained to us and with diagrams as well, but it was verbal so we were trying to think in our minds exactly what was said and so invariably, at subsequent appointments, we seemed to be always in the process of clarifying exactly what was said the time before. So it would have been useful to have had in our minds earlier and quicker exactly what Bethan's condition was.' [496]
427 Paul Bradley referred to the difficulty of making `informed decisions' and made a proposal:
`About ... informed consent ... It was difficult for us to absorb all the information and so to be fair to them, for us to make an informed decision it was difficult for us because we had no medical expertise. So the ability of ourselves as parents to make an informed decision about an operation we accept is very difficult, but in the light of what we now know, and what we have thought about since, we would have wished that there was perhaps just ... outside of the hospital - an outside team, panel of experts, to which Bethan's case, because of the complexity, could have been referred to. They could have decided, perhaps overridden, rather, with regard to Bethan, the decision for Bethan's operation to take place in Bristol, but perhaps to take place somewhere else where there was more experience to maximise the possible chance of survival.' [497]
428 Paul Bradley suggested a particular role for counsellors:
`A counsellor is there to help a parent, to make sure that the parent understands what is being told by the medical team, that their role is to make sure that parents understand and to clarify any misunderstanding in what is said perhaps in the diagnosis or in what treatment is being proposed, and as to what the parents' understanding is concerning the risk. We perceive that that is within the role of a counsellor and not so much in the role of the medical team ... we have always seen the role of counsellor as a befriending role, helping us to get through this awful situation, and being there to help us. I think that would have been greatly valued, if right down the line they were there, not just as a friendly face but also as a person who would help us to make sure we understood what the different aspects of Bethan's condition was and the treatment proposed and the risks and so forth.' [498]
429 Paul Bradley expressed the view that any discussion of mortality rates should be realistic and not unrealistically optimistic. He said that there should also be consistency among those who discuss the issues with parents. Discussions of such matters as bereavement facilities, post-mortems and administrative matters surrounding death should, he said, be conducted `when one is in sober mind', [499] some time before the operation when the trauma and other conflicting tensions were not at their highest. [500] He told the Inquiry that:
`We would have liked it if even perhaps a year or so, but certainly a few months before, if there had been what I describe as just a routine appointment with a liaison counsellor and that particular person, as a matter of routine, if they had just said to us, "It is my job, my job description to go through this with you, Mr Bradley, it is not because of Bethan's particular case, I have to do this with every patient." If they had that expectation to deliver certain information such as what bereavement facilities were available in the unfortunate event of death, what was entailed with post-mortem, what that exactly was, so that we were clear ...
`Our impression was that for the staff at the BRI it was almost as if they found it difficult to contemplate failure as well, and as if it was a management problem for them. When Mr Wisheart conveyed to us the problem of there being a 1 in 4 chance of failure, this was earlier on, the nursing staff would turn around and say, "But you must look at it the other way, Mr Bradley, a 3 in 4 chance." So the emphasis was put on the other side. We can understand both sides of the line, but then again, we would have wished that as a consistency there had been a tempering of both sides, of the optimistic side and of the what I would call, not the negative, but the realistic side ...' [501]
`The way that we would have liked it in our circumstances is if it had been conveyed before death, and I say "before death" because if it had been done in a routine manner; what was the procedure for complaints, what the line of communication was, to whom we should go, what the facilities were as regards bereavement, what postmortem meant, but also, especially about the retention of organs. I think we would have perceived it better if it had been a few months or even a year or so before the operation; not just before the operation, but a few months before.
`Obviously it is something that we would have hoped never to have come to pass, but we see that it would have been as it were an aspect of the tempering of the things that we were looking for, the optimistic, the mortality rate like the 3 in 4 success, that that would have been an aspect of the tempering, and we would have accepted it, that it was not being negative to Bethan's case, but just as a matter of protocol, a matter of routine, that that was part of their job to do well beforehand, I think well before the operation, not the day before, but well before, when we were in a spirit receptive to receive that information.' [502]
430 Paul Bradley suggested that, as a point of reference, all post-operative counselling and support procedures should include an invitation in writing to return and meet the clinicians. [503] He said that a parent, traumatised after the death of a child, might find it difficult to remember what was said at the time, whereas written information was something that they could return to and consider in the future.
431 Sharon Tarantino, mother of Corinna, told the Inquiry that she would have been upset if such matters as post-mortem and organ retention had been discussed before an operation and that she would not have found it helpful. [504]
432 She agreed that it would be useful to have some formal system whereby an arrangement could be made to come into the hospital to speak to a counsellor who would ask, amongst other things: `Is there anything you want to know which you do not know and feel we can help you with?'. [505]
433 Sharon Tarantino also agreed with the value of written information being that one has the opportunity to:
`... take it, think about it and understand it when one had the time to get one's mind around it.' [506]
434 Michelle Cummings suggested:
`I think parents do need as much information as they can personally take on board and I think if information is going to be given to parents, it needs to be in a form that can be understood and that misunderstandings are less likely to happen, and I think perhaps with that, you need consultation and I think that perhaps there needs to be clear guidelines so that parents know what to expect and what their options are. But I think in 1988 or 1987, for myself and Rob, these questions were not being asked. There was no reason in our eyes for them to be asked. We trust Mr Wisheart; we always have done. We trust Dr Jordan, and always did, so that was not a concept that we thought about at the time. We had a sick child and we needed help and these people offered to help her. I think that also is a major consideration for families.' [507]
435 Sheila Forsythe said that it would be helpful if the pre-operative conversations and estimates of risk and descriptions were put in writing:
`I think it would definitely help, because so many people take so many different things away with them. I know from our point of view, again, we had taken different views of what had been said. It is quite clear that those parents who were supported, who had a piece of paper with a diagram, seem to have been able to understand more.' [508]
436 Justine Eastwood suggested:
`Any information extra to what you have been told, if there is anywhere where parents can go to read up, to watch videos, anything. At that particular point, where you have been told your child has something wrong with them, you just want to absorb as much information as you possibly can, from any source, really.' [509]
437 Some of the parents suggested that they would want complete frankness from the clinicians, no matter how upsetting it was initially.
`I think one of the things I feel is that it can be difficult if, as a parent, you obviously do not go into hospital wishing your child to die. You go into hospital because part of you feels that this is the right place to be and these people will help to make your child well, so that you can bring them home. With that, I think, goes an unrealistic expectation of what you think other people can do for your child, and that can be difficult, then, when you are actually taking on the information that is being given to you, because you can be selective, and you do not want to hear certain views. Mr Wisheart was extremely honest with us. He went into every risk factor, every possible thing that he, at the time, felt may go wrong or would go right. There were no angles that we had not covered. But there was still that element that I felt, "Yes, but I want to take her home, so, you know, you have to do it right, so what if this happens, what will you do if you cannot do that?" I did go into those questions with him and that can be very difficult, because how much information in that state can I actually credibly take on board and how much does that clinician - do they know how much to give me? And when you have reached saturation point, it is just going over your head. I think that is a very real problem.' [510]
439 Marie Edwards suggested that not all parents wanted as full an account:
`I think it goes through more on a judgment of the person feeding the information to the parent. The parent [sic] needs to be able to communicate clearly and decisively the needs of each individual parent. Some parents want to know, other parents wish, and choose not to. I feel strongly that each individual should be treated in that way, as an individual person.
`I feel the person should be able to have a feel of what that character is and what their needs are as a parent and to ask their wishes ... Give them time to actually get their heads round the situation. You go into immense shock, almost a shutdown of knowing that your child is in hospital per se and never mind the severity of the operation, it is an operation, it is terrifying to any parent because you know there is a risk factor. It really ... takes time for you to actually absorb and to digest before you can move on to asking why, how, when? So I feel it is up to the person that is delivering the information to be skilled enough to read the signs when it is time to give that parent enough space to be able to gather their thoughts, as it were ... Be it 10 minutes, 15 minutes, 2 hours, that break can be immensely important. Just to allow the parents to realise what is going on. With me it was a terrible shock to hear that my daughter was not going to obtain an operation, yet she was going to die, was not given that choice, the chance of life. To me it terrified me but I can only speak from my experience and I feel any form of 5 or 10 minute break to allow that parent to understand and gather their thoughts and discuss it with their partners if they have a partner with them.' [511]
440 Justine Eastwood said that she did not think it was always appropriate to leave parents with hope:
`I think you need to know. It hurts. You do not want to be told your child is possibly not going to survive the operation, you want the surgeon to say "Everything is going to be fine, I am going to pull the child through." It hurts to hear it, but you need to know the truth. I do not want to be told everything is going to be jolly and fine. It is a fact of life.
`... You do not want people to be cruel to you, but you need honesty in a situation like that. You just have to deal with it. You are in a situation that you cannot get out of; you have to deal with it.' [512]
441 Richard Lunniss, father of William, told the Inquiry that:
`... you cannot trust people if you do not think they are being honest, even if they are being nice. Once you think that they might not say the thing as it is, then you can never believe quite - there is no working relationship from that point on.' [513]
442 Michelle Cummings told the Inquiry:
`I ... have a concern ... of what actually informed consent is and how do you sort of measure that? How do we, as parents, know exactly what our rights are in terms of informed consent? If you asked me, I feel that I was fully informed and I have no illusions of what I was told. I am quite, you know, firm on that. But if you asked another person who I feel perhaps was given the same information, their opinion and their analysis of what they were told was completely different. So I wondered whether part of the Inquiry would be to look at ways of perhaps providing guidelines for parents so that we actually know when we are going into hospital, before we go into hospital, exactly what we can expect, what our rights are, and exactly what informed consent is for us, what it means to us so that there can be no misunderstandings ... I think it has to be for clinicians as well. It is no good telling the parents one thing if the clinicians do not know. It has to be something that everybody knows what the other person's role is. So otherwise, it will not work. But if the clinicians are in a position where they are uncertain what their position is regarding informed consent and they feel in good faith that they have acted and given the information over, but the parents' interpretation does not agree with that, then you have a problem. So if you have guidelines, perhaps, that both the parents and clinicians understand, perhaps it will help towards clarifying it.' [514]
443 John Mallone told the Inquiry that:
`I think consent for the operation has to be fully informed consent and if, as I hope will happen, surgeons are going to be made to say what their percentage success rates are, then that should be part of that informed consent [515]... I think the more channels of communication you use to inform one the better the information is going to be received, understood ... a video ... book, diagram, face-to-face contact, to reinforce one another. There is no ideal method, you need to have them all.' [516]
`... Doctors must be trained to communicate more openly and effectively with patients and those responsible for them, for example parents. There is a fine line between not wanting to worry people and being unduly optimistic to the point of misleading them ... Doctors and others involved in patient care must also be more aware of the need to communicate effectively with one another. It should not be possible for a parent to be told that a child is going to die and then for this information to be flatly contradicted by another doctor.' [517]
444 The evidence set out in the Interim Report of the Inquiry [518] (as to the retention of organs and the giving of consent for post-mortems) has not been repeated here, but nonetheless forms part of the body of material upon which the Inquiry has drawn for its conclusions. Reference should be made to the Interim Report for a review of the evidence received by the Inquiry specifically in relation to informing parents of the need for a post-mortem examination and as to the information given concerning retention of their child's tissue and organs.
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Footnotes
[504] T53 p.74 Sharon Tarantino
[505] T53 p.69 Sharon Tarantino
[506] T53 p.76 Sharon Tarantino
[507] T95 p.60-1 Michelle Cummings
[508] T95 p.68 Sheila Forsythe
[509] T95 p.70 Justine Eastwood
[510] T95 p.79-80 Michelle Cummings
[511] T95 p.134-5 Marie Edwards
[512] T95 p.80 Justine Eastwood
[513] T95 p.81 Richard Lunniss
[514] T95 p.92-3 Michelle Cummings
[515] T95 p.201-2 John Mallone
[518] The Inquiry's Interim Report `Removal and retention of human material', May 2000