Annex A > Chapter 17 - Communication Between Healthcare Professionals and Patients > UBH/T clinicians' evidence
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UBH/T clinicians' evidence
59 Mr Janardan Dhasmana in his written evidence to the Inquiry stated:
`... in the 70s and 80s, there was no concept of "Informed Consent". The "consent taking", as [it] was called at that time, ranged over a wide spectrum. At one end were the surgeons, who spent minimum time in explanations, recommended the operation and expected the patient/guardian to sign the consent form while at the other end considerable time and effort was devoted in explanations. Similarly the patients also ranged in two categories, one who did not wish to know too much and wanted to leave the details to surgeons, and others who did wish to enquire about details of the procedure.' [75]
`The decision to operate on children was taken jointly with the attending paediatric cardiologists in all cases. In fact the child was initially admitted, investigated and treated by the paediatric team and then referred to surgery ... All routine and most of the urgent cases were discussed in the joint meeting [76] attended by clinicians involved with the investigations and management of these children. The child's clinical condition, haemodynamic data and angiogram would be discussed at this meeting, which would also include risk assessment and their suitability for surgery. Clinician's opinion on the child's condition used to help in prioritising the admission for surgery and conveyed as such to the parents during our meeting.' [77]
61 Mr Dhasmana stated that he believed parents were informed of the risks of proposed surgery on at least three occasions in routine cases:
`a. By the cardiologist - after the diagnosis was established following the investigations ... when surgery was considered as the choice of treatment ... Usually the cardiologist would have talked in detail about the pathology and pros and cons of the choice of treatment. I believe risk of surgery was mentioned during this discussion; [78]
`b. First meeting [79] with the surgeon - This used to take place in the outpatient department in most of the cases but on some occasions in the medical ward after the investigation and discussion in the joint meeting. ...; [80]
`c. On admission to the surgical ward - In routine cases children were admitted about 48 hours before operation and I used to see parents again before surgery and invite [them] for another discussion if they so wished. Since it was now our second meeting, it would have been run on the lines of a question and answer session and I would try to clarify if there was some doubt or misunderstanding in their mind. However I tended to be a bit more reassuring during this second meeting as I did not wish to increase their anxiety any more than was naturally present on the day before their child's operation.' [81]
62 As for emergency operations, Mr Dhasmana stated that the first contact with parents would be treated as a `first meeting':
`... the meeting would take place in the ward, usually introduced by the referring cardiologist or the accompanying ward nurse... I would stress the gravity of [the] situation and the reasons for recommending an emergency surgery. On a number of occasions I would have emphasised that even though the risk was high, i.e. 50:50 or even higher, their child may not survive without surgery. Examples are when babies were suffering from TAPVD, Truncus and some with complex and multiple problems, especially if they were already on ventilator and haemodynamically unstable.' [82]
63 Mr Dhasmana described what happened at a `first meeting', with parents, which mostly took place in the outpatient department but on some occasions took place in the medical ward:
`(i) I would introduce myself as a surgeon to whom the child was referred, examine the patient and start my preoperative discussion. The abnormality in the child's heart would be explained with the help of a diagram or sketches. These would come from either the cardiologist's notes/catheter report, or from my file of collection of various diagrams and sometimes in the form of hand drawn rough sketches. The surgical techniques would be explained in the same way with the help of sketches. It would have always been mentioned whether the procedure was open-heart surgery or a closed procedure and where it would be performed ...
`(ii) The risks, in particular the mortality, was mentioned in the form of percentage i.e. 20% or to simplify 2 out of 10 would not survive the operation. The morbidity or the possibility of postoperative complications would be mentioned during this discussion but figures would not have been mentioned, as these were not available at the time locally or from any other centre in the country. I have always mentioned that there was [the] possibility of injury to other organs of [the] body like lungs, kidneys and brain following the use of heart lung machine but these are becoming rarer with the continuing improvement in perfusion and surgical techniques. I would have also mentioned that these injuries would not be noticed until a few days after the surgery ... Similarly the possibility of incidence of paraplegia after the surgery for Coarctation of Aorta was mentioned to parents of these children. The discussion on morbidity could go in more detail if parents asked further questions.
`(iii) I would have mentioned if there were possibilities of any further surgery in the future. For example, if the intended operation was a palliative procedure, i.e. shunt or PA banding, I would have mentioned the possible time frame for the definitive repair along with a brief description of that operation. Similarly, in cases of Tetralogy of Fallot, AV Canal and some other conditions where a VSD was also present, a possibility for repeat operation for residual VSD or further surgery on affected valve or scar related narrowing of Aorta and/or Pulmonary artery would also be mentioned.
`(iv) I would also state at this meeting that most children after surgery would require some form of medication for some time. This would be supervised by the cardiologists in the follow-up clinics and withdrawn, once the child has made full recovery from the operation. I also used to state that their children would be followed by the cardiologists for some time, maybe years. They would monitor the child's progress clinically and with investigations, such as a 2-D Echo examination, and refer the child back to me if any further intervention was required.
`(v) I tried to be as open and frank as possible during this meeting and as a result, on [a] number of occasions parents used to get upset especially with the mention of mortality and at times the accompanying nurse or counsellor would spend some time in trying to reassure the parent. I have also tried to reassure them on occasions with the statement, like, hopefully their child would come through this operation without too much trouble.
`(vi) I believe that this meeting was the best opportunity to discuss the risks associated with surgery. This gave them the time to ponder on various aspect[s] of the discussion and raise some further questions, which was not clear to them, with their GP and/or referring cardiologist. They could seek further clarification with me when the child was admitted for surgery. However, since it was our first meeting, the parents used to be very anxious and at times certain part[s] of the discussion could have been misunderstood as I found out on few occasions through their GP or the referring cardiologist's phone calls or letters. Similarly, there were [a] few occasions when parents had stormed off from the clinic or the ward after our first meeting, to return later after due consideration on their part.' [83]
64 Mr Dhasmana told the Inquiry further that:
`Whenever I have mentioned, I think if I was seeing a child, then talking to the parents, I would in a way draw diagrams and I would really say what was wrong, and of course, then I would mention that there are two ways of dealing with it: one is if I am seeing the child at 7 or 8 months of age, and no VSD, then there is no use talking about the Switch there; that is a straightforward Senning.
`But of course in a child where both operations could be advised, there, especially a neonate, I would be talking of two ways of dealing: one is Senning, but that means waiting for 6 to 8 months from now, when this would be carried out. Unfortunately, the long-term outlook of Senning is not certain. Secondly, the Arterial Switch which I can repair right now, of course, it carries a high mortality, as compared to Senning, but with Senning, low mortality and long-term uncertainty, I think higher mortality at this time is quite acceptable, and I would strongly recommend that Arterial Switch is the better operation. That is how I put it.' [84]
65 On the role of non-clinicians, such as specialist nurses, family support services staff and junior staff, Mr Dhasmana stated that:
`There was no organised set up where these groups could routinely express their opinion. However the "Joint meeting" used to be attended by few nurses, cardiac technicians and the cardiac counsellor, but mostly as observer.' [85]
66 Mr James Wisheart, consultant cardiac surgeon, stated in his written evidence to the Inquiry:
`For decision-making about elective patients there were two meetings each week for virtually the whole of the period between 1984 and 1995. These were essentially meetings between the cardiologists, the cardiac surgeons and the cardiac radiologists but which frequently included the paediatric counsellor together with nurses and radiographers who worked in the catheterisation laboratory. From time to time an anaesthetist attended but this was not common. Where consultants were present, as far as possible, their juniors would attend also ... Within these meetings patients were referred to Mr Dhasmana or me. The format of the meeting was that the paediatric cardiologist responsible for any given child would indicate to which surgeon the referral was being made. He would then present the case giving an account of the clinical history, the findings on examination, the ECG and chest X-ray, what the echocardiogram showed and what were the findings at cardiac catheterisation, angiography and any other special tests which had been done, such as a CT or an MRI scan. It would be normal for the echo to be shown to the whole meeting, as would the angiograms, plain X-rays, CT or MRI scan.' [86]
`As an anaesthetist, I was not involved in pre-operative planning. This was no different from my experience in Oxford, although when I was in Southampton I would be involved in such discussions when cases planned for the next week were presented at a multi-disciplinary case conference.' [87]
68 Mr Wisheart stated that the nature of the discussion which followed would be determined by whether:
- `... the patient in question was quite straight forward and there was a broad body of accepted knowledge and practice concerning what should be done.
- `the child had a straight forward condition about which there would be little disagreement as to what was appropriate, but in whom there were significant additional features of one sort or another. These additional features might require a discussion, modification of the usual strategy or even a more radical change in strategy.
- `the patient had a condition and needed treatment which was more complex; there would then need to be a detailed discussion of the criteria on which selection for any given procedure was made.
- `the child was one of a very small group with a rare condition needing uncommon and complex procedures; in some of these we might feel it wise that the patient should be discussed with colleagues at another centre, usually Great Ormond Street.
`In order to reach a decision there would then be a discussion which might primarily be between the referring cardiologist and the surgeon to whom the patient is referred but which would actively include all the others attending the meeting. The discussion was always open and contributions were always welcome from whatever source.' [88]
69 Mr Wisheart then set out the four possibilities arising from the meeting and discussion:
- `... that advice should be given to the parents that an operation should be undertaken and the parents would then be seen, either in the ward or in the outpatients.
- `that further investigations should be carried out and the findings reviewed subsequently.
- `that a decision not to operate should be taken which might actually be one in principle for the long term or one to be reviewed after an interval.
- `advice might be sought from elsewhere.' [89]
70 As regards the involvement of other members of the team, Mr Wisheart stated:
`While the cardiologist may well have suggested what type of surgical procedure would be appropriate for the child, at the end of the discussion the surgeon has to make a recommendation.' [90]
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Footnotes
[75] WIT 0084 0116 Mr Dhasmana
[76] For a typical example of Joint Cardiac Meeting minutes, see UBHT 0188 0001
[77] WIT 0084 0121 Mr Dhasmana
[78] WIT 0084 0116 - 0117 Mr Dhasmana
[79] See below for details of what transpired at a `first meeting'
[80] WIT 0084 0117 Mr Dhasmana
[81] WIT 0084 0119 Mr Dhasmana
[82] WIT 0084 0119 Mr Dhasmana. See Chapter 3 for an explanation of clinical terms
[83] WIT 0084 0117 - 0119 Mr Dhasmana. See Chapter 3 for an explanation of clinical terms
[84] T87 p.86-7 Mr Dhasmana. See Chapter 3 for an explanation of clinical terms
[85] WIT 0084 0121 Mr Dhasmana
[86] WIT 0120 0128 - 0129 Mr Wisheart
[87] WIT 0341 0018 Dr Pryn
[88] WIT 0120 0129 Mr Wisheart
[89] WIT 0120 0130 Mr Wisheart
[90] WIT 0120 0132 Mr Wisheart