self catheterisation
98 A necessary consequence of urinary undiversion surgery was that KL would have to self catheterise. Dr Farnsworth told her that there were two alternative modes of performing this, and that "the differences are only cosmetic": that is, that neither had any particular medical advantage over the other. The complaint made on behalf of KL in this respect is two-fold. Firstly, she complains that Dr Farnsworth failed to warn her that there was a risk (which in fact eventuated) that she would be unable to self catheterise; and that, had she been warned of this risk, she would have opted for an ileal conduit instead. Further, by amendment to the statement of claim which KL was given leave to make on the second day of the trial, she also asserted that Dr Farnsworth had:
"failed to convey to [her] the ramifications of the use of the catheter and how this would affect [her] day to day activity."
99 What KL asserts in this respect is that Dr Farnsworth failed to explain adequately to her what was, in practical terms, involved in self catheterisation; and, again, she asserts that had she been fully informed she would have elected the alternative procedure.
100 The evidence concerning potential inability to self catheterise is, to say the least, scanty. Dr Farnsworth's evidence in this regard was really given principally as part of his account of what he had told KL in the pre-surgery discussions. He was asked in his evidence in chief:
"Do you have a recollection as to whether or not you referred to any experience you had had with patients being unable to self catheterise?"
101 To this he replied:
"I certainly had had experience with patients having difficulty with intermittent catheterisation after complex reconstructive surgery when new urethras were made. One patient specifically had difficulties, but he was a male and the male urethra, when reconstructed in a patient with exstrophy, is extremely tortuous. It is reconstructed from three different segments of tissue. The capacity and size of the channel varies, so intermittent - any form of catheterisation in a male with exstrophy of that vintage, not the type of surgery we do now but of that vintage, can be difficult due to the tortuosity, and we certainly had a male patient who prior to Mrs [L] had the identical operation, conceptually the same operation, who went through a phase of difficulty learning how to get the catheter in."
102 Dr Farnsworth said that that patient was ultimately able to learn to self catheterise and was still doing so several years later.
103 In cross-examination, but in answer to questions also directed to what he had, and what he should have, told KL, Dr Farnsworth said:
"Well, that is where the difficulty lies, in that there is no simple technique of showing her what is involved, in terms of a trial of catheterisation, to see how you can cope with it, to see if it is a technique you can master, because the anatomy is not there for her to have a trial of it first. …
My attempts to explain it were more along the lines that, although difficulty can occur with catheterisation, it is principally with the males. As I acknowledged, I had not reconstructed a female urethra before. But my advice, from the world's expert in this area, was that it was a significantly simpler procedure for both the surgeon to achieve it and the patient to be able to catheterise in a female, in this situation, than a male…
I told her that it is a technique, catheterisation, that some women, as I judged her to be, who was motivated, intelligent, and committed to that, she would achieve self catheterisation with the back up situation that our department had to offer her."
104 A little later it was put to Dr Farnsworth that it was a relatively common occurrence for women to abandon attempts at self catheterisation, but his answer was that in his experience, while it did occur on occasions, it was uncommon. He was not convinced that it was more common for women to give up attempts at self catheterisation than for men to do so. His experience, he said, was that the number of women who abandon the attempt "are relatively few".
105 Dr Winkle was asked about this subject in correspondence from KL's solicitors. In his report dated 10 April 2000 he set out a question he had been asked by those solicitors. It was in these terms:
"7. Do you agree with the authors' description of general complications on p 456? I gather than [K] had some problems with accessing the catheterisable stoma. Are these complications that she could have expected in any event if she had urinary diversion (sic) to a catheterisable soma (sic)?"
106 The reference to "the authors' description of general complications on p 456" appears to be a reference to a publication by "Carroll and Barbour" earlier referred to in the correspondence. It may be inferred that this was some form of journal publication by medical practitioners, a copy of which the solicitors sent to Dr Winkle. However, although Dr Winkle, in his reply, enclosed a different article by different authors (Mitchell C Benson, MD and Carl A Olsson MD, entitled "Continent Urinary Diversion") the publication by "Carroll and Barbour" is not in evidence. Their "description of general complications" is similarly not in evidence. In any event, Dr Winkle replied in the following way:
"Some complications in relation to this surgery are mentioned in the paragraphs that you nominate but there are many complications both general and specific that can occur following such major surgery. [K]'s difficulty in accessing her neo bladder via her urethra related to tortuosity of the neo urethra. [K] also had problems in relation to continence of that neo urethra. Both these difficulties are potential difficulties, which may have occurred if a catheterisable stoma had been used in the first instance."
107 I have concluded that the evidence, particularly that given by Dr Farnsworth himself, does establish that an inability to self catheterise was a potential outcome of the surgery and that it should, therefore, have been drawn to KL's attention. It is therefore necessary to consider what Dr Farnsworth did tell KL about this. In his statement (exhibit M) Dr Farnsworth wrote:
"20. Mrs [L] was informed that self catheterisation takes time to learn but that she would eventually be able to self catheterise. I did not advise Mrs [L] that catheterisation would be painless. I expressed confidence in the ability of the specially trained catheterising staff to assist Mrs [L] to learn to self catheterise. I explained to Mrs [L] that the surgery would reduce the risk of kidney infection as her urine was draining into a low pressure system. I said that she may still get infections in her urinary tract but that these would not reach her kidneys and cause further kidney damage.
21. I did not discuss with Mrs [L] the possibility that she would not be able to self catheterise. Mrs [L] was not advised that the neo urethra could be obstructed presenting (sic - ? preventing) intermittent catheterisation. I had not previously had a patient experience this problem nor been aware of it being reported in the literature.
22. Another patient of mine took two months to learn to self catheterise and this patient also experienced pain initially. He continues to self catheterise years later."
108 In his evidence in chief Dr Farnsworth recounted the conversation with KL on this aspect. He said that KL told him she had not heard of catheterisation for this type of situation to which he replied:
"'Mrs [L], there's been, since 1975, for many years at least, for many years at least, there has been a trend towards intermittent catheterisation as a method of, preferable method of protecting the urinary tract and emptying the bladder, be it the native bladder or our own one or a new one, and it won't empty spontaneously.' … 'This type of bladder we will create will not empty spontaneously, it has to be emptied by catheter.
Mrs [L], I consider there are definite advantages in this type of operation as compared to the one you have, as compared to redoing your ileal conduit in that, and the main one is that it offers significant additional kidney protection. Even if infections get into this bladder, you are offered protection against them getting to the kidneys but it does have the disadvantage that you will have to catheterise . …We do have in our department, both in the ward we have special trained nurse clinical consultants to help you learn to catheterise, whichever route of catheterisation you choose, and we have a backup Urology Training Unit with two full time specialist sisters whose sole job is to assist patients with type of problem to learn to catheterise … Mrs [L], I have confidence in your ability to learn how to catheterise.'" (emphasis added)
109 A little later, still in his evidence in chief, Dr Farnsworth was asked whether he had any recollection as to whether he had referred to previous experience with patients being unable to self catheterise. He replied in the terms previously extracted. He went on to say, again referring to what he had said to KL:
"'Mrs [L], I don't anticipate you having a significant problem with self catheterising, as with the female the urethra is much shorter and it should be a straighter channel, and although there may be difficulties initially I have confidence in both your ability to do it and our specialised staff being able to train you how to do it.'"
110 He confirmed that he had been enormously impressed by KL's ability to cope with her difficult medical situation and with the adverse circumstances of her condition; by her positive attitude, her enthusiasm, and the procedure offered her to improve her quality of life. He considered her to be intelligent and capable and had confidence in her ability to learn to catheterise.
111 Dr Farnsworth's evidence in this respect was largely consistent with that of KL. In her statement (exhibit D) KL said that she had asked what self catheterising was to which Dr Farnsworth replied in words to the effect of:
"That is the next option I am giving you. We form a neo bladder from the existing bladder and the new ureters will lead from the kidneys into the new neo bladder instead of the urine running straight into a bag. You are made continent and a small plastic catheter is inserted into the neo bladder two or three times a day to empty it. This is a painless and simple method which gets rid of the bag and no one can tell you are doing this as it is performed sitting on a toilet and only takes a few minutes. Also it has the advantage of not showing through any clothing or swimwear. If you choose the self catheterising method there are sisters at Prince Henry Hospital whose job it is just to teach people how to catheterise and you will be taught by them after my surgery. There are two methods of catheterising and you will have to decide which one you want if you choose this option. The first method is through the stomach. A small stoma is made and a couple of times during the day you insert a small catheter into the stoma while sitting on the toilet and empty your bladder. The second option is having no stoma and catheterising urethrally which means you insert the catheter into the bladder by the urethra and you do not have a stoma on your stomach…
I have performed hundreds of undiversions where I have got rid of the bag and converted people to catheterising. Many people with spina bifida and paraplegia used to have ileostomies but most people with spina bifida have been converted successfully and paraplegics now are not given a bag but self catheterise."
112 KL confirmed this account in oral evidence. She was not cross-examined to suggest that her recollection of this part of the conversation was in any significant way faulty.
113 As with the references to the possibility that KL would suffer from diarrhoea following urinary undiversion surgery, I have come to the view that Dr Farnsworth did not make adequate disclosure to KL about the possibility that she would be unable to self catheterise. Again, I am satisfied that Dr Farnsworth glossed over the disadvantages of urinary undiversion because of his conviction that this was the preferable course. It will be necessary later to consider the consequences of this conclusion.
114 That leads to the second limb of KL's complaint about what Dr Farnsworth told her about self catheterisation. I have already referred to the evidence of what Dr Farnsworth in fact said. The second part of the complaint is that Dr Farnsworth failed to give KL a clear picture of what would be required of her, and what her life would be, if she were to opt for the procedure that involved self catheterisation. This was on the assumption that she was able to self catheterise. The starting point of what is in fact involved is exhibit E on which heavy reliance was placed on behalf of KL. Exhibit E is a handout, a four page document provided to patients of Prince Henry Hospital who undergo catheterisation training. It is headed "Clean Intermittent Catheterisation - A Guide for Female Patients". On the first page are some introductory remarks, pointing out, inter alia, the importance of regularly emptying the bladder, that the technique of "clean, intermittent self catheterisation" is easy to learn and has certain identified benefits. That section concluded with the words:
"Most people find that catheterisation four times a day is ideal."
115 Four necessary items of equipment were then identified. These are special glass catheters, "wet ones" or baby wipes, a receptacle for urine collection, and a bag for rubbish.
116 On the second page there is a diagram of the relevant anatomical portion, followed by nine points of procedure. On the next page six items under the heading "Care of Equipment" are listed followed by five "Points to Watch". On the last page is a section headed "Care of a Urethral Catheter with Leg Bag".
117 KL said, and it was not contested, that she was not given a copy of this document until after the surgery had been performed.
118 In relation to this evidence KL was subjected to a most searching cross-examination. She said that if she had known "what was involved in self catheterisation" she would have elected to have a revision of the ileal conduit rather than urinary undiversion. She was asked to explain what she meant by "everything that was involved" in self catheterisation and said that even the contents of exhibit E would have been enough to deter her from the course she took. She said the self catheterisation procedure did not suit her life style because she worked 70 - 80 hours a week, played sport and had outings with her family, but that her need to self catheterise meant that she "lived in" public toilets. She said that because it was necessary for the procedure to be clean she had to wash her hands thoroughly and carry additional equipment with her and that if she forgot it she was "in trouble". She said she did not like the thought of performing the procedure in a public toilet. She said that the procedure in a public toilet was inconvenient because of the lack of facilities for placing the equipment, and that the main problem was the lack of hygiene and facilities in public toilets. As well as this, when she was visiting friends, it was always necessary for her to take a handbag to the bathroom with her and that this was not something about which she could be as discreet as she had been with the ileal conduit.
119 Later in the cross-examination KL was further pressed on this evidence. She was asked if there were any matters other than those mentioned in exhibit E which, if she had known of them, would have influenced her against urinary undiversion and in favour of ileal conduit surgery. She again referred to the inconvenience of having to take her equipment with her everywhere she went, and having to take a handbag, and the embarrassment of having to take it into the toilet even when visiting friends. She did agree, when it was put to her, that, by a process of inference, she must have known that it would be necessary for her always to carry her catheter with her.
120 Ultimately, it seemed to me, that KL's complaint was encapsulated in this answer:
"Dr Farnsworth conveyed it to me in a very casual manner. You go into the bathroom, you pop a catheter into your urethra, you drain your bladder and that's it."
121 She then added that the constant urine infections were also a factor.
122 The subject was raised yet again when KL was asked what it was that she found so shocking about the procedure. She gave an answer which included an account of the attempts made at catheterisation by the nursing staff in early 1996 but progressed to this:
"When I went to the sisters and they explained the procedure to me, how it doesn't have to be sterile but it has to be a very clean procedure and I read exactly what it entailed [in exhibit E] and the cleanliness and the amount of times I would actually have to go per day that was - I was angry and upset at that stage I just thought, you know, what have I got ahead of me."
123 In answer to a further question she said it was the need for cleanliness that worried and concerned her because she was unsure how she would keep her hands germ free "in modern day society", given that she spent most of her day away from home. She then expanded, describing the procedure thus:
"Go and wash your hands, get out the baby wipes. You've got to try and juggle them on your legs. You've got the baby wipes here. You've got the catheter here in some sort of container. You've got the lubricant. So, you've got to try and juggle the lubricant in one hand, catheter in the other then you've got to try and balance. You don't want to put your handbag on the ground. It was just the whole procedure. I know thousands of people have it and I know it suits thousands of people but it was just, 'how am I going to manage with this?'"
124 She also said that the frequency with which she would have to self catheterise troubled her; that Dr Farnsworth had told her that she would need to catheterise two to three times a day but that exhibit E suggested that she would have to do so "every three or four hours". She said that came as quite a surprise to her. Of course, exhibit E did not state that it would be necessary to catheterise with the frequency stated by KL. Exhibit E was shown to KL and she accepted that there was not a great difference between a frequency of two or three times a day, as she said had been suggested to her by Dr Farnsworth, and "ideal" frequency of four times a day as suggested in exhibit E.
125 KL then referred to the equipment it was necessary for her to use, and her distaste for the procedure as it had been taught to her in the hospital. She contrasted catheterisation as described in exhibit E and in terms of her own experience, which was very different, more difficult and more painful. She again described the embarrassment and inconvenience of using the equipment in public toilets and the difficulty of handling the glass catheters and washing them in public toilets, and finally, a matter she acknowledged was "just laziness", the inconvenience of having to boil the catheters twice a week.
126 What seemed to be a disproportionate amount of time was devoted to the question of self catheterisation, but I do not think it is fair to characterise KL's objections to the procedure as trivial or unrealistic, as, it seemed to me, the tone of the cross-examination suggested. The fact is that, over her lifetime she had accustomed herself to the procedures associated with the bag and the ileal conduit, and had managed these without undue inconvenience, frustration or embarrassment. I do not think it is unrealistic for KL to have been surprised and unhappy at the very different and more demanding procedures associated with self catheterisation. I think she is justified in complaining that she was given inadequate information about what self catheterisation would mean in terms of her daily routine.
127 This was not a "risk" in the sense in which that word is used in Chappel v Hart and Rogers v Whitaker. But it is a circumstance that is material to the very important decision KL had to make and one which may well have affected her decision had she been fully informed.