An Hospital NHS Trust v S & Ors

The Hospital Trust has brought the proceedings in the High Court in respect of S who is a patient of the Hospital. S is 18, having been born on 26^th September 1984. He was born with the genetic condition, velo-cardiac facial syndrome, which is the result of a deletion of chromosome 22. He has a number of major problems, principally severe global developmental delay and bilateral renal dysplasia. In May 2000 he was admitted to the Hospital for emergency treatment for acute renal failure and has been on haemodialysis ever since. His medical treatment is seriously complicated by his severe learning disability with problems arising from his limited understanding of the medical treatment he is receiving. He has been diagnosed as autistic. He suffers from epilepsy, a tendency to blood clotting, for which he takes warfarin, and has a moderate immuno-deficiency. His mental capacity has been assessed by a clinical psychologist as about 5 to 6 years old with even more limitations on his verbal communication skills. He clearly does not have capacity to make decisions about his medical treatment. The issues which bring this matter to court at the instigation of the Hospital Trust revolve around his future treatment and management of his end stage renal failure. The High Court is invited to give declaratory relief in the exercise of its inherent jurisdiction based upon a judicial assessment of the best interests of S.

In the pleadings, the Hospital Trust sought a declaration that it should be permitted not to perform a kidney transplantation on S since it would not be in S’s best interests. It also sought a declaration that S should not undergo peritoneal dialysis. It has always been the intention of the Hospital Trust that haemodialysis should continue for the foreseeable future but that, in the event that haemodialysis could no longer be provided, no other form of dialysis should be attempted and there should be provision for palliative care. The parents opposed the granting of the declarations and wanted the Hospital Trust to carry out a kidney transplantation on S. His mother who is his devoted carer offered to donate one of her kidneys which, from initial tests, might be compatible. Although there has been some question mark over her intellectual capacity, there is no suggestion in these proceedings that she is not competent to make that offer. The Official Solicitor acts on behalf of S. His initial stance had been that all forms of dialysis should be considered and he reserved his position on the suitability of a kidney transplantation.

As the case progressed, the areas of disagreement diminished substantially. On the basis of the medical evidence to which I shall turn below, there is general agreement that S should continue on haemodialysis as long as he is able to do so. The parties have agreed that, when haemodialysis can no longer be given, S should be put on to peritoneal dialysis. It is further agreed that a kidney transplantation is not in S’s best interests at the present time. There remain two outstanding areas of disagreement:

Underlying these two issues is the conflicting evidence as to the extent to which S would be able to understand the purpose of any treatment or surgery, be prepared for it, be able to cope with it and be managed by the hospital staff without undue distress to him and without undue difficulty for the Hospital staff. The differing perceptions of the witnesses as to the severity of S’s learning disability, his ability to cope with change and the ability of others to cope with the interference to his routine, lies at the root of the opposition of the Hospital Trust to a kidney transplantation or to attempting the use of an AV fistula as an alternative to the present method of haemodialysis.

S first came to the attention of the Hospital Trust as a small baby when he was admitted for investigation for a variety of medical problems, including bilateral dysplastic/hypoplastic kidneys with reduced renal function. He was thereafter seen regularly in the paediatric outpatient department of his local hospital and it was apparent from blood tests that he had progressive renal failure. He was on medical treatment for epilepsy and low calcium. In January 1998, in a specialist paediatric department of another hospital, he was diagnosed as suffering from velo-cardiac-facial syndrome. He was also seen by a consultant immunologist and tests revealed a mild problem with his immune system.

On the 2^nd May 2000, S was admitted to the local hospital and transferred to the Hospital Trust for emergency treatment. He was diagnosed with end stage renal failure with severe fluid overload and respiratory failure. Two consultants counselled the family about the severe difficulty of undertaking dialysis treatment with such a developmentally delayed child and raised the question whether dialysis was appropriate. The family wished everything possible to be done for S and the Hospital Trust decided to treat him. He underwent emergency dialysis that night and has been stabilised on regular maintenance haemodialysis ever since. During the emergency treatment which included giving a general anaesthetic, the hospital staff found him difficult to manage. He was very distressed on emerging from the anaesthetic and difficult to control. During May and on his readmission in June 2000, he was sometimes aggressive and violent towards his mother and the nursing staff. Several times he pulled out tubes or lines and he had to be physically restrained. He was treated with antidepressant medication and on occasions sedated before dialysis. From the records it can be seen that he then settled down and became more manageable.

S lives at home with his parents and one of his sisters. Another sister visits regularly and stays overnight. He is lovingly and appropriately cared for by his mother. At home he plays with toy horses and trains and watches videos. He appears to have good concentration and is able to look after himself to some extent. According to the investigations of the Official Solicitor, he can interact with others, his powers of communication are increasing and he is becoming more spontaneous. He attends a special school where he presents no behavioural difficulties and takes part in school activities.

S currently attends the paediatric unit three times a week for haemodialysis. Each session takes about 4 hours. Since he is autistic, routine is important for him but over two and a half years he has become accustomed to a routine and he generally sits in the same chair. During dialysis he can move about to some extent. He is provided with toys and plays on the hospital computer which is brought to him on a trolley. A teacher assigned to the paediatric unit works with him during dialysis. There are problems for the Hospital Trust in communication with him since they have only attempted speech and have not used any forms of facilitation, but S is normally patient and co-operative with the process of dialysis. He is settled in the paediatric unit, and has become accustomed to its routine in which he clearly receives a high degree of personal medical and nursing care and where his problems are well understood.

S’s current central venous dialysis catheter (Permcath) is the 5^th central line that he has required. His previous lines have failed due either to infection or blockage. The current line was inserted in October 2000 and has been effective for an unusually long period. It became affected by a highly antibiotic-resistant bacterium which caused S to have intermittent bouts of fever over a period of 6 weeks at the end of last year. The failure initially to control the bacterium led to the present proceedings being initiated by the Hospital Trust since it feared there might be no further venous entry points available if the current line had to be removed. The bacterium is now controlled and the urgency of the medical situation has receded, although S is likely to have recurrent bouts of fever every three to four months. In any event it is clear that decisions should be taken now to plan his future treatment and deal with the issues in dispute.

The Hospital Trust has cared for this young man as an inpatient and an outpatient since May 2000. The paediatric outpatient unit sees him three times every week and they have had a very good opportunity to form a view as to his mental capacity and ability to accept change. As a result of the problems in May/June 2000, the Hospital Trust asked a consultant developmental paediatrician, Dr B, to assess him.

She saw S on the 28^th November 2000 and her report was provided to the court. In it she pointed out that she learned from her discussions with the parents that S showed very directive behaviour which involved verbal and physical abuse to his mother from time to time. He was, however, very well behaved and compliant with her colleagues. Her conclusion was that he had severe learning difficulties and social impairment which was most marked with peer interaction. He had good relationships with adults. Combined with his somewhat rigid expectation of events, and his severe learning disorder he also had a more pervasive developmental disorder that was within the autistic spectrum. She wrote

“S’s learning difficulties are such that understanding the reasons for events taking place or prevention of drink would simply not be understood and S would use the method of communicating that lack of understanding in the only way he knows how which is verbal and physical protest. It is going to be helpful to use visual methods of explaining things to S but even then it does not mean to say that he is necessarily going to accept them.”

He is the consultant paediatric nephrologist currently responsible for the care of S. His report is dated the 2^nd December 2002 and he also gave oral evidence. He said in his report

“We have established that he copes extremely poorly with any change to routine. ….S has strong autistic features as part of his condition. Provided he attends for dialysis regularly, provided he sits in the same seat in the dialysis room, provided he has access to his usual toys and games, and so on, then he can cope. However any deviation from this produces great distress in S and his behaviour becomes aggressive and violent. He has hit, punched and kicked his mother and also physically attacked the nursing staff. S has required sedative medication in order to allow us and his mother to manage him.”

Dr R was very concerned about the effect upon S of a kidney transplantation. Although that is not now the immediate issue, there is nonetheless a dispute as to whether S should ever have such a major operation. Therefore I set out below the concerns of Dr R in his medical report.

"Dialysis and transplantation treatment is very unpredictable and prone to sudden and dramatic changes and unexpected need for medical intervention. Transplantation itself poses a huge stress on all families. There are no guarantees of success. The out patient follow up after transplantation in the Paediatric Transplant Clinic is very intense with daily visits for the first 6 weeks, three times a week visits for the next 2 weeks, twice weekly visits for the next month and then weekly visits until 6 months. Following that the visits become slightly less frequent. In a transplant that is completely straightforward with no complications there are some 200 out patient visits in the first year. At each of these visits a blood test is required, blood pressure measurements must be made and so on. S has great fear of needles and venepuncture and we believe he would find this extremely distressing. One of the immunosuppressive drugs that we routinely use, prednisolone, can have profound effect on mood and behaviour in patients, including increased aggression and temperamental behaviour. We are concerned that this would further aggravate S’s behavioural problems.

It is certain that S will find this extremely difficult and of course our concern is that he does not understand why this is being “inflicted” on him. By some assessments, S has the mental age of a young child. It might be argued that if we put a normal young child through such difficult treatment, then why would it not be reasonable for S? However, the difference is that children of 3 or 4 years have the capacity for normal intellectual and emotional development, and they will then be able to understand the rationale for their treatment and hopefully appreciate that this has given them a better quality of life. S, however, has got no real future potential for intellectual development, based on the assessments performed, and we firmly believe he will never be able to grasp why he is receiving treatment which he finds so distressing.

Our conclusion

Our conclusion is that kidney transplantation is not in S’s best interests. Rather we feel it would be a highly distressing form of treatment which S could not cope with. All our assessments tell us that he would not understand why he was being put through such distress, and that his quality of life, rather than being enhanced, would in fact suffer greatly.

He has achieved some sort of stability and tolerable routine on haemodialysis. This treatment itself is prone to complications and changes. Indeed, S is currently on his 5^th dialysis access catheter, and it was during urgent admissions to replace previously blocked or infected catheters that his severe distress and fear of change in routine became so apparent.”

In his oral evidence he said that he would see S on most occasions when S came into the unit. He underlined the concerns of the paediatric unit about any treatment out of the ordinary of a sort which S has been able to tolerate. He had consulted widely and was supported in his conclusion that kidney transplantation was not a realistic option by the multi-disciplinary team responsible for S’s care. Dr R set out his view of the statistical prospects of success for a patient with similar medical problems to S. He indicated that he would advise a patient with medical complications similar to S but only if the patient had adequate mental understanding of the operation to have a transplant.

S is now 18 and his adult status has a number of consequences for his medical treatment. Dr R, in his oral evidence, explained that S must move out of the paediatric unit in the next few months.

Dr A and Dr S are consultant renal physicians in the adult renal unit at the Hospital and provided a joint report dated 2^nd December 2002. The joint report set out the procedure for a kidney transplantation and assessed whether such a major operation was in S's best interests. They wrote

" Although transplantation is the most appropriate treatment for suitable patients, it is a complex procedure with a recognised morbidity and mortality. The commonest type of donor kidney is from a cadaver source. The likely timing of transplantation from such a source is therefore unpredictable and patients are often called in with little warning. In the adult ESRD programme, once on the transplant waiting list, suitable patients usually wait for 1-5 years on dialysis before a kidney can be found for them. Factors that influence the time on dialysis to transplantation include recipient factors such as blood group and immune sensitivity and donor factors including tissue type match and availability. Once admitted for transplantation patients proceed rapidly to theatre for an operation that requires an incision in the pelvis and placement of the transplant kidney. On return to the ward it is vitally important that patients are closely monitored usually with a central intravenous catheter, a bladder catheter and a variety of drips and infusions. A complex regimen of immunosuppressive drugs is administered following transplantation, including high dose steroids. Daily, or often more frequent, blood tests are required as are investigations such as ultrasound or more complex imaging procedures such as CT scanning or magnetic resonance scanning. Because of the danger of infection, the frequent blood tests are taken from arm veins and it would not be possible to leave a line in circulation for monitoring purposes.

A proportion of transplants (approximately 20-30%) do not function from the outset and in this setting patients require continued dialysis and may require frequent renal transplant biopsies at approximately 5-7 day intervals. Renal transplant biopsy is an important tool in the successful management of renal transplantation and is an important method for the diagnosis of transplant dysfunction. A large gauge needle is placed in the kidney usually under ultrasound guidance using local anaesthetic and sedation. The major complication of this procedure is bleeding and therefore patients need to remain still in bed after this procedure. In uncomplicated patients, after a 7-14 day hospital stay, patients can be discharged home but there is an absolute requirement for frequent monitoring of transplant function and immunosuppressive drug levels. For the first 3 months this requires a visit 3 times per week to the transplant unit with blood tests and a fairly frequent requirement for urgent re-admission during this period, usually for a renal biopsy to exclude rejection. The frequency of visits and of blood tests does diminish after the first 3 months but there is an absolute and continuing requirement to monitor graft function and there is no way of doing this other than by blood testing. The transplant procedure and the schedule for post-transplant monitoring are gruelling but, for suitable patients, it does offer a better quality of life and therefore the associated morbidity is acceptable and understood by those patients who are transplanted. Were a patient unable to comprehend and to be distressed by the interventions required during and after the procedure and in the post-transplant period and had no capacity to develop such understanding, then transplantation could not be deemed to be in a patient’s best interest. In consultation with our paediatric colleagues and in discussion with a panel of clinicians not linked to either the adult or paediatric renal units, there is a clear view that transplantation would not be in S’s best interests now and that no change is likely in the future to alter this view. In this case our opinion is that transplantation could not be deemed to be in S's best interests."

Dr A also gave oral evidence in which he supported the approach and conclusions of Dr R and his team. He gave an account of the situation in the adult renal unit. He pointed out that once S attends the adult clinic (which may be in the Hospital or at a local clinic), the facilities will be more limited, as will be the individual care to which he has become accustomed. There are far more patients and less opportunity for individual attention to each patient. Clearly the adult clinics have other patients with mental disabilities but S’s mental and physical disabilities present greater problems than the normal. Everyone agrees that there will be a major disruption of his present routine and it will take him some time to adapt both to his new surroundings and to the different regime. The move to the adult clinic will be a very difficult experience for him and for those around him.

This is an alternative form of haemodialysis requiring surgery to create a channel of direct communication between an artery and a vein in the arm. It enables dialysis by the use of two large needles which are inserted on each occasion the dialysis takes place. The use of the two needles would be an alternative to the permanent central venous catheter which S has at present. It would be necessary for the treatment to be, as at present, three times a week. Each session would take about four hours.

Dr R and Dr A felt that to use an AV fistula would cause S discomfort, some pain and distress and was unlikely to succeed. They did not feel that one could be certain how S would react if a fistula was surgically created and dialysis using needles via the fistula started and the central venous catheter removed. They were particularly concerned that no-one could predict S’s reaction to the use of large needles and there was a danger that to attempt to create a fistula might have the effect of putting S off going to hospital and taking advantage of the current successful treatment and thereby endangering any form of dialysis. They were also concerned that, if S had a fistula, he might accept needles for some dialysis sessions but not others and he might, therefore, require sedation and restraint with an unacceptable risk to him and nursing staff. The use of sedation would mask warning signs of any adverse effects of treatment which could be observed in a patient who was awake and alert. The medical and nursing team had great reservations about S’s ability to understand any of the steps required to create a fistula. Dr R and Dr A also felt that it was unlikely that S would maintain his arm in a stable position for the required time and that this was a further reason for not using a fistula as a method of dialysis access for him. It was the strongly held view of all those engaged in the care of S that an AV fistula should not be attempted. They did not believe it to be a good method of treatment and were concerned that, with the experience of S’s reaction to previous general anaesthesia, it would be necessary for him to have a general anaesthetic. If he pulled the needle out of his arm there would be copious bleeding and this would be distressing to S. They pointed out that the experts suggesting the use of an AV fistula did not have the two and a half years experience of dealing with S as an inpatient and outpatient. In their view it was not in S’s best interests to have an AV fistula created and used.

She is in charge of the paediatric unit and regularly gives S haemodialysis. She said that he tolerated the haemodialysis since no pain was involved in the process. When it was necessary to use a needle it was a very thin needle for sub-cutaneous injections. He was so used to his present routine there was no difficulty in him following it. They did not use any facilitation methods but had introduced the yellow and red cards for bad behaviour which he understood. They used positive strategies to encourage him to do his school work during dialysis and then he could play with the hospital computer. If they used other needles they would try to distract him. S did not like restrictions and she did not believe that he would allow them to do what he did not want them to do. She was very doubtful about any attempt to give him dialysis by an AV Fistula. He would not be able to move his arm.

The alternative view of S’s capabilities and further possibilities for his treatment are set out in the evidence of Dr Williams, a clinical psychologist, asked to examine S by Ms C when she believed that decisions about S’s future were to be taken in May 2002, in the statements of his parents, by the headmistress of the school he attends, by his advocate and by the consultant child psychiatrist, Dr H and by Dr C, the consultant nephrologist, both instructed jointly by the parties.

Dr Williams is an educational psychologist and his report, dated 22^nd May 2002, was completed nearly two years after the report of Dr B. He observed S at school and in class. He found S was able to spell simple words and had ‘extremely good levels of concentration for a child in his type of special school for about 20 minutes and one to one 40-50 minutes’. He had very limited social interaction but he did accept help from Dr Williams and he ‘had very good manipulate skills using a mouse’. On the tests he had a word reading age of 6-7 years and quantitative reasoning of 5-6 years but his verbal comprehension was under 3 years old. Dr Williams wrote

“He is overall functioning in the 5 to 6 year range in most cognitive areas but there is clearly a very marked difficulty in understanding of language and this is in high contrast to his capacity to name individual objects.

Further his ability to express himself is still limited by poor articulation which was evident when he was seen by a psychologist when he was only 3 and a 1/2 to 4 years of age. ….

Overall I found S to be a very gentle and passive young man but one who could engage in activities for lengthy periods with some enjoyment and perhaps most importantly, particularly when seeing him on the computer programme, he shows both a capacity and a strong desire to learn.”

S’s current head teacher, Ms C, gave oral evidence. He had attended her school since 1988. She had known him since 1995. Before his acute renal failure in May 2000, he attended school 5 days a week and he now attended 3 days a week. He was autistic but his behaviour now compared favourably with other autistic students. He was making good progress before his acute renal failure in 2000. After his return to school in July 2000 he was found to have lost skills he had previously acquired and she agreed that the report of Dr B in November 2000 was a true reflection of his ability at that time. But he did improve from about September 2001 and the report of the psychologist Mr Williams, dated 22^nd May 2002, showed S had made progress within the limitations of autism and his quality of life was now very good. Ms C made it clear that at school he was able to participate and to enjoy school activities including reading, spelling, painting, writing, drama, music.

Assisted by S’s advocate Miss G, she had started to give S explanations about his treatment using visual aids which were quite effective. She did not consider that, with correct management, his behaviour would be a problem. He needed to be motivated with inducements. She disagreed with those treating him at hospital that he would not understand why he was being given painful treatment. He was able to retain information around a predictable routine which he could understand. He would get into a routine if he had a prompt. However, he did have a problem if he was faced with an emergency for which he had not been prepared.

The emergency admission to hospital in May 2000 meant he had no preparation. With preparation the outcome could be different. He came through the emergency situation and two years later was doing better. She felt that he needed a four to six week preparation period. She thought there was a tendency not to appreciate the potential S had for understanding and that he did have the capacity to learn. There was also a danger of too much routine in his present hospital treatment. It would be good for him to have to adjust to some changes to make him more adaptable. She felt it was important to have someone who could manage his behaviour. Her evidence was supported by a statement from Miss G, who had been appointed advocate for S.

She is a social worker with the learning disability team and has been assigned to S for nearly a year. She explained in her oral evidence that he would have to leave the school this year, since he was 18, but it was hoped that he would go to college or day centre either locally or possibly a residential college out of the area. She had been investigating the options and considered he would be best placed in a residential college. There were advantages to a residential college where he would return home at weekends and during the school holidays. There would be a case conference to make arrangements.

It appears that any of the proposed medical treatment could be managed at a residential school. The opportunity of residential care for S was not affected by continuing to treat him by haemodialysis. If he had a kidney transplantation, he could be provided with 24 hour care by a team of carers who would try to ensure that it was managed by someone who knew S and was experienced in dealing with autism. If he were to be treated by peritoneal dialysis in the future, it would be necessary to have discussions with the primary healthcare trust as to who should provide the support for the treatment at home. Such support would be provided. She had not observed any aggressive behaviour by S and she had seen him about once a month. S would continue to be provided with an advocate, but the advocate would change since he was now an adult. Arrangements must be made to move him to reflect his adult status and, however well managed and staged, he will inevitably experience another major disruption in his present home and school routine. These issues were likely to coincide.

She is the Director of Services for children in the Primary Care Trust. In a written statement she said that her Trust had not yet been formally approached to help with S. The Trust was enthusiastic to work in a multidisciplinary capacity to determine the best means to provide the necessary care for S both as a child and as an adult. They would devise a care plan with other agencies to establish what was needed for his treatment, including peritoneal dialysis at S's home and to provide any necessary training for his care. This support would extend to his attendance at college within or outside the area in which he lives. Her Trust was ready to be innovative.

The parents attended court. It was not necessary for them to give evidence but I had written statements from them both. They emphasised that S enjoyed all sorts of things at home and at school. He was fond of swimming which he was unable to do since the insertion of the permcath. His behaviour at home was generally good but they did experience problems from time to time. When he was angry or upset he did sometimes make to hit people and did sometimes hit his mother. This happened when his routine was upset or something unexpected happened. It is clear, as I have already set out, that his mother cares for him devotedly and attends hospital with him. It is equally clear that neither she nor the father could be expected to do more than is presently done by them.

He is a child and adolescent psychiatrist with considerable experience dealing with young people with learning disabilities including autism. He spent over two hours with S and agreed that S came within the spectrum of autism and that S did not have capacity to make decisions about his medical or other care. In his opinion S had the capacity and the desire to learn aspects of his medical care. He would be able to understand simple things about his treatment. A step by step process would be right in all circumstances. In order to ameliorate the problems of change of routine and coping with unexpected events, the key was to enhance communication with S. His relative impairment of verbal comprehension indicated that the verbal channel might not be the best way to communicate with him. He could be helped by other techniques such as the use of signs and symbols. Dr H understood that there had not in recent years been any advice from a speech and language therapist about communication with S but that S did know the Makaton signs and symbols and some detailed advice could be given by the local community team for people with learning disabilities. Improvement in the channels of communication could make it easier for him to cope with the unexpected. A degree of repetition was needed with a time scale of up to three months. With preparation S would tolerate change.

Dr H pointed out that, when S was admitted to the Hospital Trust in May 2000 he had not been prepared for the admission since it was an emergency. Consequently, S was clearly very distressed and problems were experienced. In his opinion, S's future behaviour problems could be minimised with help from a specialist psychologist and S would benefit from being under the care of a psychiatrist specialising in people with learning disability. There were medications available to help with behavioural problems in autism which could be considered and S might also benefit from sedation when he was required to undergo distressing procedures. He believed that S would benefit from a renal transplant and the dis-benefits could be substantially ameliorated. He was satisfied from his assessment of S that he did not have a needle phobia, although the evidence was that he did not like needles. There were techniques that could be used to help deal with the use of needles, for instance, help from specialist learning disability nurses.

He is a consultant nephrologist and clinical director of a renal unit. In his opinion S's haemodialysis seemed to be working well and his quality of life was good. Many patients would have a good quality of life on haemodialysis and could survive for many years without major complications and there was no reason why that could not be the case with S although that would be influenced by his vascular access. From his medical notes, there did not seem to be any problem at the moment placing lines for haemodialysis. He felt that S might be able to use haemodialysis for about 10 years, although he recognised it might be as short a period as two years. It was not immediately necessary to consider peritoneal dialysis. He supported the views of the Hospital Trust that a kidney transplantation was not suitable. He set out his reasons and concluded

“The chances of successful renal transplantation would therefore be lower in S, in part because of his underlying immunological and coagulation abnormalities as discussed above and in part because of likely problems with compliance and monitoring in the post transplant period. Compliance with medication is not likely to be a problem with S as it would be entrusted to others. However, clinic attendances, frequent blood tests and sudden decisions to perform further investigations, to admit him or to perform a renal biopsy are likely to be more difficult and not immediately accepted by him. This could result in delayed decisions and less satisfactory care.”

"The benefits of successful renal transplantation are likely to be less in a patient such as S. The benefits of freedom from dialysis and improved general health are greatest when the dialysis is preventing the patient from, for example, working, travelling or caring for children. This is not the case with S and therefore I do not feel that a successful transplant would be associated with a dramatic improvement in his quality of life compared with that he is experiencing on haemodialysis."

He felt that the complications of renal transplantation such as further surgery, rejection, infection or graft loss would have a disproportionately large effect on S and therefore renal transplantation was inappropriate for him as the risks of the procedure outweighed the benefits.

In his oral evidence he added that a renal biopsy would be more difficult for S since he was on warfarin. It was necessary to reverse the warfarin before doing the biopsy. Generally a renal biopsy had to be done as quickly as possible to remove the problem and protect the new kidney from further damage. The necessary delay resulting from the use of warfarin could have adverse effects upon the kidney. He was concerned both about the transplant and the renal biopsy. His general views of the prospects of success of kidney transplantation were more optimistic than those of Dr R. I have not set out the comparative statistics offered by Dr R and Dr C since a renal transplant is not an immediate option and the risks and prospects may well change in the next few years.

In the view of Dr C, dialysis could be associated with a good quality of life and a transplant did not necessarily improve the quality of life. It was not necessary to make a decision about a kidney transplantation now. Over the next few years there could be more information as to whether S could cope with it.

In a supplementary report Dr C said that the formation of an AV fistula was a relatively minor operation taking 30-60 minutes with an overnight stay in hospital. Usually the fistula could be used for haemodialysis after 6 to 8 weeks. The delay was to allow the blood flow through the vein to increase and for the vein to become thicker walled, ‘arterialised’. A local anaesthetic was used before the needles were inserted in the vein and once in, the patient should experience little discomfort. It was unusual for needles to come out during dialysis. The risk of any blood loss would be minimal since there is a high level of supervision. It was possible for the patient to use the arm to a limited extent during dialysis.

Dr H and Dr C felt that it was necessary to explore the likelihood or otherwise of S accepting needles in an AV fistula on a regular basis. They suggested that this could be done by a progressive exposure of S to needles, for example by advancing from showing S a needle to taking regular blood samples from a vein to inserting a dialysis needle into the skin under local anaesthetic (mimicking the use of needles for a haemodialysis session). Such a programme of graded exposure accompanied by relaxation should be supervised by a psychologist or behaviour nurse therapist experienced in working with people with learning difficulties.

An AV fistula had certain advantages over haemodialysis. There was no plastic used and there was a much reduced risk of infection compared with a tunnel line. Further, an AV fistula would give greater freedom, and would enable him to go swimming. The long term possibility for a fistula was 10 to 15 years. Dr C and Dr H agreed that, if approached gradually, the initial steps might not be very distressing. It was possible to move backwards and forwards in the use of different methods of dialysis.

That S is not competent to make decisions about his further treatment is clear from the agreed medical evidence. I rely, in particular, on the evidence of Dr H, as a consultant child and adolescent psychiatrist.

The sanctity of life is a fundamental principle and there is a very strong presumption in favour of a course of action which will prolong life (see re B (A Minor)(Wardship: Medical Treatment) [1981] 1 WLR 1421 where the Court of Appeal reversed the decision of the court below and directed surgery on a Down's Syndrome baby with an intestinal obstruction where the parents had refused consent to the operation). Lord Goff of Chieveley said in his speech in Airdale NHS Trust v Bland [1993] AC 789, at page 864

“…the fundamental principle is the principle of the sanctity of human life - a principle long recognised not only in our own society but also in most, if not all, civilised societies throughout the modern world, as indeed evidenced by its recognition both in article 2 of the European Convention for the Protection of Human Rights and Fundamental Freedoms (Cmd 8969) and in article 6 of the International Covenant of Civil and Political Rights 1966.

But this principle, fundamental as it is, is not absolute…….We are concerned with circumstances in which it may be lawful to withhold from a patient medical treatment or care by means of which his life may be prolonged. But here too there is no absolute rule that the patient’s life must be prolonged by such treatment or care, if available, regardless of the circumstances.”

These considerations are of particular relevance to the facts of the present case where the existing and proposed treatment options are crucial in order to sustain S's life.

When adults are unable, due to mental incapacity, to make decisions about their medical treatment, the treating clinicians, in consultation with the patients' families, have a duty to make decisions for those patients. Lord Goff of Chieveley in his speech in re F (mental patient: sterilisation) [1990] 2 AC 1 at page 77 said

“I find myself to be respectfully in agreement with Lord Donaldson of Lymington MR, when he said 'I see nothing incongruous in doctors and others who have a caring responsibility being required, when acting in relation to an adult who is incompetent, to exercise a right of choice in exactly the same way as would the court or reasonable parents in relation to a child, making due allowance, of course, for the fact that the patient is not a child, and I am satisfied that that is what the law does in fact require.”

I said at paragraph 42 of my judgment in Simms v Simms; PA v JA [2002] EWHC 2734

“In a situation where there is no application to the court, and the patient does not have capacity to make a decision about medical or surgical treatment, the doctor has, in my judgment, two duties. First he must act at all times in accordance with a responsible and competent body of relevant professional opinion, generally described as the ‘Bolam test’ (see Bolam v Friern Hospital Management Committee [1957] 2 All E R 118 [1957] 1 WLR 582). That is the professional standard set for those who make such decisions. There is a second duty. In re A (Male Sterilisation) [2000] 1 FLR 549 I said at page 555

“The doctor, acting to that required standard, has, in my view, a second duty, that is to say, he must act in the best interests of a mentally incapacitated patient.””

In cases where there is a disagreement between the family of an adult without the competence to make decisions about his future medical treatment and the clinicians who are caring for him and the issue is a potential life or death decision or serious irreversible surgery, the court may in the exercise of its inherent jurisdiction grant declarations as to the lawfulness of the proposed medical or surgical treatment (see re F above, I said at paragraph 46 of my judgment in Simms v Simms; PA v JA (above)

“In a case where an application is made to the court…..it is the judge, not the doctor, who makes the decision that it is in the best interests of the patient that the operation be performed or the treatment be given.”

The assessment of best interests is not a narrow one. I said in re A (Male Sterilisation) [2000] 1 FLR 549 at page 555

“In my judgment best interests encompasses medical, emotional and all other welfare issues.”

Thorpe LJ said in re A at page 560

“There can be no doubt in my mind that the evaluation of best interests is akin to a welfare appraisal……...

Pending the enactment of a checklist or other statutory direction it seems to me that the first instance judge with the responsibility to make an evaluation of the best interests of a claimant lacking capacity should draw up a balance sheet. The first entry should be of any factor or factors of actual benefit. In the present case an instance would be the acquisition of foolproof contraception. Then on the other sheet the judge should write any counterbalancing dis-benefits to the applicant. An obvious instance in this case would be the apprehension of risk and the discomfort inherent in the operation. Then the judge should enter on each sheet the potential gains and losses in each instance making some estimate of the extent of the possibility that the gain or loss might accrue. At the end of that exercise the judge should be better placed to strike a balance between the sum of the certain and possible gains against the sum of the certain and possible losses. Obviously, only if the account is in relatively significant credit will the judge conclude that the application is likely to advance the best interests of the claimant.”

When considering the best interests of a patient, it is, as is set out in Thorpe LJ’s judgment above, the duty of the court to assess the advantages and disadvantages of the various treatments and management options, the viability of each such option and the likely effect each would have on the patient's best interests and, I would add, his enjoyment of life. On the facts of the present case in particular, any likely benefit of treatment has to be balanced and considered in the light of any additional suffering the treatment option would entail.

It is important, at this stage, to take into account in this assessment the observation of Dr H that just because a person cannot understand treatment it is wrong to say that he cannot have it. It is crucial that S, suffering, as he does, from serious physical and mental problems, is not given less satisfactory treatment than a person who has full capacity to understand the risks, the pain and discomfort inseparable from such major surgery. To act in any other way would be contrary to the rights of a mentally incapacitated patient both under our domestic law and under the European Convention. Miss Harry Thomas expressed concern that the failure of S to understand the rationale behind surgery was a deciding factor in the decision not to operate. On behalf of the Official Solicitor representing S she submitted that inability to understand treatment should not preclude life saving treatment. The inability to understand must make the treatment intolerable. If there is a quality of life then, even if it is necessary to go through a traumatic period, it would be worthwhile in the long term.

The Hospital Trust has, very properly, made it clear that it has always recognised the right of S to be treated as fairly as any other patient without his disabilities. I have no doubt that the Hospital Trust wishes to do the best it can for S and has tried to put his best interests in the forefront of its planning. But the approach of the medical and nursing team, both in the paediatric unit and in the adult unit, has been coloured by their real difficulties in the lack of verbal communication with S and their vivid recollections of how difficult he was to manage in the hospital after he was admitted for emergency lifesaving treatment in May 2000. I have the feeling that those difficulties may have had a disproportionate effect upon their approach to future treatment for S.

In order to come to a conclusion as to the treatment which it would be appropriate for S to receive in his best interests, I have to form a view as to the degree of understanding that S has and his ability to learn about his treatment. S's severe developmental delay and autism permits him to function generally in the age range of 5 to 6 years. His particular deficit in verbal communication appears to mask his other abilities. His autism makes a settled routine very important to him. The emergency admission to hospital in May 2000 must have been a most distressing and confusing experience for him and his reaction was not surprising. He was looked after by strangers and was unable to comprehend what was going on. His very limited ability to communicate verbally was a particular obstacle. It is noteworthy that he later settled reasonably well and is generally passive and good-humoured during his periods of treatment.

His lack of verbal communication skills does not appear to be a clear indicator of his overall cognitive ability. From the evidence of Dr Williams and Ms C as well as Dr H, I gained the clear view that if S were able to be given specialist help and the appropriate aids he would have somewhat more ability to learn than the Hospital Trust has been able to accept. It is worth pointing out that none of the nursing staff or treating clinicians has tried to communicate with him other than by ordinary speech. S has also managed to cope with further admissions to hospital and several minor operations as well as the regular visits to the hospital. Ms C felt that he ought to be made to cope with some degree of change. I found Ms C’s evidence to be most impressive. I therefore accept the evidence of Dr H and of Ms C that there are procedures which can be followed with expert help. Miss H and Miss R made it clear that help could be provided to S and that there were suitable people to call upon who would be available in the area to carry out those procedures. A suitable care plan could be drawn up to work out the best way forward to meet his medical needs.

The options are

In the Consensus Statement drawn up by the three consultant nephrologists and the consultant psychiatrist during the hearing it was agreed that S should move from haemodialysis to peritoneal dialysis if haemodialysis became difficult or impossible or no longer provided S with a satisfactory quality of life. His present haemodialysis access via a tunnelled haemodialysis catheter would be able to continue for some time even if the lines had to be changed. It was at present providing him with a satisfactory and stable quality of life. There is therefore no issue surrounding those two methods of dialysis. Haemodialysis by the present method might last from 2 years to 10 years. Peritoneal dialysis is unlikely to last beyond 5 years because of the adverse effect on the lining of the abdomen after about 5 years. It would then be possible to return to haemodialysis if a suitable vein was available. I have no doubt that it is in the best interests of S that each method is used to its fullest extent in order to provide him with the best possible life sustaining treatment through the agreed forms of dialysis. In the light of the agreement of the medical experts and of the Official Solicitor representing S, I consider that it is in S’s best interests for him to continue to receive dialysis as long as some form of dialysis is working and is providing S with a reasonable quality of life.

AV Fistula/Fear of needles

The evidence from the Hospital Trust shows that at the very least S does not like needles to be inserted and he may be somewhat afraid of them. The advantage of the present dialysis is that it is not usually necessary to use a needle for blood tests. However, in the past S has not made it impossible for blood tests to be taken with the use of needles nor for the use of needles on occasions when general anaesthesia has been needed in connection with minor operations. It is not at all clear that he is seriously afraid of needles and I am satisfied from the evidence of Dr H that he does not have a needle phobia. There are procedures to ameliorate the situation when it is necessary for needles to be used. Methods of distraction and reward have indeed been used successfully with him in the past.

The four consultants disagreed on whether an AV fistula should be attempted. There are both benefits and dis-benefits to the process set out by the medical witnesses. I recognise the concerns of the Hospital team that to attempt to use needles might imperil his dialysis treatment. That is a risk, but from the evidence of Dr C and Dr H, supported as it is by the evidence of Ms C I am satisfied that the benefits of an alternative method of dialysis with less fear of infection and with advantages to S’s enjoyment of life, make the attempt one worth making. In my view, an AV fistula should be seriously considered when S has had time to settle down in the adult renal unit and time to accustom himself to the other inevitable changes in his life, such as a change of educational establishment. Clearly it must be approached with considerable care and in consultation with learning disability experts. It should not, however, be ruled out as an option.

The consultant nephrologists agreed that it would not be in S’s best interests to have a kidney transplantation in the immediate future. This approach was supported by the Official Solicitor and the parents did not seek to argue against it. The evidence on kidney transplantation has taken up a considerable part of the court hearing and I have set out above in some detail the views of the clinicians. This is for two reasons. First I must satisfy myself that it is in the best interests of S that a kidney transplantation should not now be carried out.

Dr C agreed in his evidence with Dr R and Dr A. Dr H considered that S should have the operation but on this issue I prefer the evidence of Dr C. It is not, on the facts, at all clear that a kidney transplantation would be the best option for S at this stage, even if he did not have severe global developmental delay. His condition is stabilised by haemodialysis which he is tolerating well. If the current central venous catheter becomes ineffective as a result of uncontrollable infection or blockage, it may be possible to try other veins and to move sooner or later to peritoneal dialysis. There is also the option of the AV fistula. Nonetheless, Dr R expressed the view that, if S were able to understand the purpose of the kidney transplantation and treatment involved he would recommend that the operation be performed. Dr C was less certain but probably would come to the same conclusion for a patient without the medical and developmental problems of S. A donated kidney, if successfully introduced to a patient, may have a period of usefulness of up to 10 years. The present use of haemodialysis might continue for up to 10 years. The other forms of dialysis might prolong S's life even further, by which time there may be advances in medical science from which S at that time might be able to benefit. The likelihood is therefore that dialysis may give S a life span similar or indeed longer than the average usefulness of a donated kidney. In the light of this evidence and, in particular, the support by Dr C of the strongly held opinion of the Hospital Trust not to operate, I am entirely satisfied that the agreement of the parties, including the Official Solicitor, is in accord with S's best interests.

The issue of kidney transplantation may, therefore, never arise and is potentially hypothetical. If, however, all methods of dialysis were to fail in the relatively near future, the issue would then become acute. I am therefore asked to advise as to the way in which this difficult question should be approached. I do not consider that I could, at this stage, possibly advise what the answer should be since there are too many imponderables.

The position of the Hospital Trust is that it still seeks a declaration to the effect that on the present state of medical knowledge kidney transplantation should not be contemplated. The only circumstance in which a transplant might be appropriate would be a change in medical science. Mr Moon, on its behalf, submitted that the medical risks would not improve and looking broadly at the best interests of S a shorter life which was more comfortable was preferable to a longer painful life. In summary he submitted that it would not be in the best interests of S to have a kidney transplantation in the future. The inability of S even to understand the purpose of the operation; the distress it would cause him; the enormous management problems associated with his post-operative care led the Hospital Trust to this conclusion. Mr Moon modified the approach of the Hospital Trust to the extent that if there were to be a significant change in S’s behaviour and tolerance to treatment and a sea change in S’s physical condition, the result of which was that he would receive greater benefit from a transplant than a burden, then there should be a reassessment of the position.

Miss Morris for the parents and Miss Harry Thomas for the Official Solicitor submitted that the possibility of a kidney transplantation should not be excluded on such a narrow basis as proposed by the Hospital Trust. There should in the future be a reassessment of the benefits and risks of a transplant and his medical condition at that time, as well as his then ability to understand and cope with the proposed treatment.

The question is, therefore, whether it would ever be appropriate to engage in this major surgery for S. The prospects of success from a kidney donated by his mother would be far higher than a cadaver donor kidney, which would be more likely to be rejected. Although the success rate of such an operation from a medical perspective was lower for someone with S's medical problems (and Dr R was far more pessimistic than Dr C on this point) if S's mother was the donor, he probably would now have a reasonable chance of success.

There would, however, be a number of obstacles. I take first the medical difficulties. The mother has only gone through preliminary tests, although so far they are encouraging. It is not certain that she would be compatible. It is an operation that carries risks for the donor. If the prospects of success were good at the time that the kidney transplantation were to be seriously considered, no doubt the mother would wish it to be carried out as she did at the beginning of this hearing. If however the prospects of success were poor on medical grounds, the risk to the mother would assume far greater importance and I have no doubt that the mother's health should not be put at risk in a forlorn hope attempt to save her son's life. That might be in the future a difficult balance to achieve but it is important to bear it in mind.

The consultant nephrologists agree that in normal circumstances a kidney transplantation should be performed as soon as possible after the end stage end kidney failure is diagnosed. Since there is a grave shortage of kidney donors, many patients may, nonetheless, wait some years for the operation and will be on dialysis until a kidney is available. In the present instance, a decision to defer the kidney transplantation has been made because the existing situation is working reasonably well. It follows from this position that a kidney transplantation is unlikely to be considered unless all other available treatment has been exhausted. It is quite likely, therefore, that S's state of health may by then have deteriorated and the prospects of success from carrying out the operation seen from a purely medical perspective, might be outweighed by the risks, pain and discomfort to be suffered by the patient. At that point, it would not be worthwhile for the patient to undergo the operation. There might have to be a difficult and delicate balancing exercise undertaken in order to arrive at a medical decision as to whether it would be at that time in the best interests of S to undergo a kidney transplantation.

The medical situation cannot, of course, be considered in isolation. There is no doubt that S's severe learning disability militates against explanations other than the simplest. I recognise the complexity of the operation and the probability of emergency recall to hospital on more than one occasion. I recognise the real concerns about the risk of infection and the likely need for one, or possibly even several, biopsies and the added difficulties for S to have an immediate biopsy, since he is on warfarin. The very real concerns of the Hospital Trust are, however, mainly based upon the consequences of emergency surgery on an autistic boy without any preparation of any kind. However, an emergency admission to hospital followed by lifesaving surgery and treatment would be a traumatic experience for anyone. For an autistic boy, as I have set out above, it must have been extremely distressing and he reacted accordingly. I have little doubt from the evidence of Dr H as to how to manage someone suffering from autism in the hospital surroundings, supported by the evidence of Ms C that a lot could be done to prepare S for the more practical and concrete elements of a major operation. He is accustomed to having minor operations. Post-operatively, the presence of someone he knows who is able to talk to him by facilitated methods would probably help considerably. With some preparation and with the support of a person or people in whom he had trust, in my view, and despite the opposite conclusions of the medical and nursing team at the Hospital Trust, S ought to be manageable post operation. The need for blood tests, the use of needles and the likelihood of several returns to hospital post operation, do not seem to me to be insuperable obstacles. On balance, however, if the medical reasons for a kidney transplantation are in his favour, and alternative methods of dialysis are no longer viable, in my judgment, a kidney transplantation ought not to be rejected on the grounds of his inability to understand the purpose and consequences of the operation or concerns about his management.

1. S cannot make his own decisions as to his future medical care since he does not have capacity to do so.

I shall consider with Counsel the appropriate declarations to reflect the conclusions to which I have come.