Final Report > Chapter 17: Parents' Experiences > Parents' experiences: communication

Parents' experiences: communication

7 While the evidence is polarised, there is a strong sense that on many occasions communication between parents and some staff was poor. There does not appear to have been any deep thinking about how to communicate information to parents in advance of surgery, nor any systematised approach to it. [8] While some parents felt that they had been significantly helped to understand what the surgery and subsequent intensive care involved, we were also told of doctors and nurses drawing diagrams on scraps of paper, or even a paper towel. [9] The sense is gained that informing parents and gaining their consent to treatment was something of a chore. Indeed, Mr Dhasmana, consultant cardiothoracic surgeon, indicated that `traditionally' the junior doctors used to get parents to sign the consent form after the admission of their child on to the ward `as a part of their clerking procedure in routine cases'. [10] It certainly did not appear to have attracted the careful thought and attention which might have been expected of a unit also designated a supra regional centre.

8 In particular, we heard a great deal of evidence from some parents who were unhappy about the risks and survival rates which were quoted to them before surgery. To the extent that many of the parents' accounts are disputed by the clinicians, we accept that there may be genuine differences in recollection, all honestly held, as to what was said. But this allows us to return to the wider point. It is difficult to imagine a more stressful time for parents. Their child was facing a major operation with an uncertain outcome and, to add to their great anxiety, they had the burden of responsibility of saying yes or no. That being so, the sharing of information should be a process. There must be time to take in what has been said, to reflect on it and to raise questions. This does not seem to have been the practice at Bristol, but neither would it have been regarded as poor practice elsewhere during the relevant period. Thus it is largely with the benefit of hindsight that the clear conclusion can be drawn that much distress and unhappiness will result if parents are not sympathetically allowed to find out what they wish to know about what is facing their child. It is not a question of the professional judging what the parent needs to know. It is the parent who should make that decision. At the time, however, the prevailing view was that parents should be protected from too much information. A further point is worth making. It is clear from what we heard that references to percentages, for example, that an operation has an 80% chance of success, is not necessarily helpful for at least two reasons. First, a parent understandably may put a gloss on the figure which plays down the fact that 1 in 5 operations will end in failure. Secondly, a parent may not know whether the clinician is referring to his own, his unit's or some national figures. Indeed, in the absence of agreed reliable data, clinicians have tended to be somewhat less than clear on this matter. If our proposals in Section Two are accepted, this issue will diminish, since data on surgical outcomes will be available to the public.

9 Finally, we acknowledge that the clinicians in Bristol as elsewhere were managing an extremely delicate process of communication, and dealing with parents who, quite reasonably, held differing views as to what they wished to be told. For example, Paul Bradley, father of Bethan, told us that he would have wished to be told at the outset as much as possible, even if it was distressing. [11] Sharon Tarantino, on the other hand, told us that information, for example, about post-mortems as her daughter Corinna was awaiting surgery, would have been the last thing that she would have wished to hear about [12]. As we said in our Interim Report, [13] information comes at a price. To know is to have to face what has been revealed. What we conclude is to repeat that there is a clear need for much greater attention to be given to communication. We take the view that there were occasions when the communication between clinicians and the parents in Bristol was less than adequate. But, against the standards of the time, the practice was probably not greatly different from that which clinicians elsewhere thought appropriate.

Footnotes

[8] In 1991 Helen Stratton introduced a booklet which she gave to parents

[9] T6 p.13-14 Douglas Bwye, father of Jason

[10] WIT 0084 0123 Mr Dhasmana

[11] T53 p.35 Paul Bradley

[12] T53 p.74 Sharan Tarantino

[13] `Removal and retention of human material' 2000. A copy of the Interim Report and Annexes can be found in Annex C