A (A Child), Re (Rev 1)

A, the young person with whom I am concerned, will be 16 years old in June of this year. At the time I am hearing this application, brought by an NHS Foundation Trust, A weighs just 5 ½ stones and has been in hospital for 10 months. She has been confined to a bed now for several weeks. Since she was transferred to the Y Children’s Hospital on the 26^th April 2013 A has undergone a battery of tests to identify the cause of the persistent vomiting which has led to her dramatic weight loss.

Dr B, the Consultant Paediatric Gastroenterologist, who has overall responsibility for A’s clinical care, has prepared a report for the court dated the 9^th January 2014. Annexed to that report is an exhibit headed ‘Patient Investigation and Treatment Summary’. That document reveals that A has had in the region of 95 blood tests (which have been largely stable), allergy tests (all normal), ultrasound scan, dexa scan and barium studies. All show results within the normal range. Some of these tests have been highly intrusive and A has required general anaesthetic for the purposes of testing on two occasions.

Following oral intake A vomits up to thirty times per day. However, an unusual feature of the history, and one which cannot be reconciled with any known clinical pattern, is that A does not vomit at all during the night. It is her habit, apparently, to sleep quite soundly from around midnight until approximately 8.30am.

Dr C, a consultant Paediatrician at the Y Children’s Hospital concluded that there was no organic cause or malignant pathology for these symptoms. This was a view that neither A nor her mother were prepared to accept. Accordingly it was thought that it might be helpful to obtain a second opinion. One was obtained from a Dr D, a Consultant Gastroenterologist. He agreed that there was no organic cause for the symptoms and in the absence of a diagnosis he settled upon the neutral conclusion that this might be regarded generally as ‘a disorder of rumination’.

A and her mother remained unconvinced and out of an abundance of caution but also to bring a fresh pair of eyes from a different hospital, a third opinion was sought. Dr David Campbell was selected, a Consultant Gastroenterologist from the Sheffield’s Children’s Hospital and he provided an analysis which has been reduced to written format. In that document he considered three diagnoses which had been considered by Dr E and Dr B.

He discounted rumination syndrome on the basis that A was regurgitating watery liquid and not food. He discounted a post viral gastro paresis on the basis that it was not consistent with the gastric emptying which had been a consistent history, and he discounted gastro oesophageal reflux disease (GORD). The latter was wholly inconsistent, in Dr Campbell’s view, with the fact that the patient did not vomit at all whilst sleeping and had no history of sleep disorder.

Dr Campbell considered two more possibilities, one a disorder of the neutrophil counts known as neutropenia, which had been further pursued by Dr B and discounted both by him and Dr Campbell by the time of this hearing, and chronic intestinal pseudo obstruction (CIPO) which was comprehensively discounted in the absence of abdominal distension and the two normal barium study tests.

Dr Campbell suggested a number of further medical investigations in order fully to discount gastroenterological causation, all of which had been completed by the time of this hearing and enabled Dr B to conclude to a high degree of certainty that there is no gastroenterological cause for A’s vomiting. That is the view of every doctor with relevant expertise who has considered the medical history of this case. It continues however to be refuted by both the mother and A.

Surveying the background as comprehensively as he did caused Dr Campbell to consider other areas that can loosely be categorised under the heading of ‘illness behaviour and obstruction to medical care’. It has not been necessary for me during the course of this hearing to investigate those alternatives or to draw any conclusions in respect of them. It is likely they will be subject to scrutiny during the course of the Children Act proceedings. I merely record his conclusions that ‘I have grave concerns that A is suffering under a form of fabricated and induced illness (the extent to which A is colluding with the mother remains to be seen). I would suggest that this goes beyond exaggerated illness behaviour…. By removing the child from a potentially harmful parent it would then be possible to see to what extent the child would benefit from less invasive care’.

On the 9^th January 20014 the Trust applied for declarations inter alia

Issues of this complexity are rarely determined on the medical evidence alone. People sometimes react in an idiosyncratic manner to medical treatment. They sometimes have their own views as to what is best for them which may not always accord with a recommendation of their doctors. It is self evident that treatment to which a patient is committed and supportive of the objectives of the doctors is far more likely to be successful. What seems the most obvious course medically may not necessarily be right for the patient, this simple truth is confronted by doctors everyday in hospital and in general practice.

Accordingly it is right that I should give thought to A’s own wishes and feelings on her treatment. In order that I was best placed to evaluate those wishes and feelings she has been represented by a guardian, solicitor and counsel. All the parties agreed that in the light of A’s presentation not withstanding her age (approaching 16 years), an assessment should be made of her capacity to understand the issues that fall for consideration in this case and in her treatment. I start from the premise that a competent young person under the age of 16 years, who is able to understand all the relevant advice and the consequences of that advice, is to be treated as an autonomous individual and respected as such. That of course would not mean her views would be determinative, but they would be given great weight:-

Two psychiatric opinions have been commissioned and both concur that A is not in fact competent to make decisions as to the appropriate course of medical treatment. Were she an adult and were I applying the criteria of the Mental Capacity Act 2005 (which I am not) the psychiatric opinion would lead me to the conclusion that A lacks the capacity to take these medical treatment decisions pursuant to section 2 (the diagnostic test) and section 3 (the functional test) of that Act. It is here relevant to how I evaluate A’s expressed wishes and feelings.

Summarising the core views as articulated by Dr G , one of the consultant Child and Adolescents Psychiatrists who undertook capacity assessment, it was concluded that A struggled to make decisions about her own care and presently suffered from a disorder of mind or brain (within the provisions of the Mental Health Act 1987 and 2007); she presented as a child with a complex somatising condition who has at very least a disordered relationship with food. In Dr G ’s analysis there was no evidence that any further time would alleviate the problem or effectively assist in aiding A’s understanding. In any event Dr G recognised, as do I, for the reason I will come to in due course, that the treating team simply did not have time to wait to achieve some improvement in A’s understanding. I agree with Dr G that A’s instinctive stance when presented with any suggestion about treatment by her doctors was to say ‘no’.

Dr G based that on her reading of the medical case notes and her own discussions with A as how best to progress her treatment plan. I heard too from Dr G and indeed from a number of witnesses that A gives the impression of being a great deal younger than her chronological age and whose language, I detect, is that of a much younger, somewhat petulant child. Notwithstanding the psychiatric evidence as to A’s lack of competence to participate meaningfully in her own medical treatment decisions, I have nonetheless given very considerable weight to her strongly expressed resistance and have also evaluated with care the options she has expressed a preference for. Over the course of two days I heard evidence from Dr G, Dr B, Ms H (dietician), F (A’s sister) and A’s Mother.

Dr B told me that A is very malnourished indeed. She is, he said, at high risk of ‘Refeeding Syndrome’ which as I understand it is essentially derangement of biochemistry, specifically sodium, calcium, phosphate, magnesium and potassium. The consequence of these deficiencies leads the patient to become weak and lethargic if unmonitored and if not managed properly the consequences are fatal. In order to avoid this Refeeding Syndrome Dr B told me it is essential that A’s future food and fluid intake is managed correctly and supervised closely. For that reason it is unwise for A to take food orally, particularly if she refuses to comply with dietary limitations. There is no doubt that she has in the past failed to comply with dietary limitations. In addition all feeds were likely to induce vomiting, and that would further and adversely impact upon her physiological state. What in Dr B’s opinion was the most suitable course was to insert an NJ tube which will bypass the stomach altogether and would therefore be far less likely to induce vomiting and thus give A a real opportunity to increase her weight and stabilise her condition.

That treatment in the view of Dr B was urgent. He told me that he had spent some time trying to persuade both A and her mother to accept this advice. Firstly, because if he managed to achieve a commitment to it, it was far more likely to be successful and, secondly, because the practical realities of imposing the treatment require overriding patient autonomy and potentially using reasonable force to ensure compliance. The Trust’s application was filed on the 9^th January, by that stage Dr B was alarmed that A’s body had already begun to shut down. In the absence of immediate intervention it was thought that she could have no more than around 8 to 12 weeks to live.

On being asked directly about the delay, Dr B had the integrity to acknowledge without hesitation that he had striven to achieve consensus with the mother and the patient for too long and that the application that I was hearing ought to have been made weeks earlier. Dr B’s dilemma is a common one. Where, for what ever reason, patients or families object to a course of treatment, time and care should always be spent exploring the possibilities of an agreed way forward in a patient’s best interest. I have sometimes felt that Trusts resort to litigation too quickly, for a variety of reasons. Equally though, as I believe this case highlights, crucial time can sometimes be lost trying to secure acquiescence. For the reason articulated by Dr G I do not believe that either the mother or A was ever likely to agree to a way forward in this case. There are occasions when it is simply the right course to go to the court directly, for the court to take the decision whether that be the Family Division in the case of a child or the Court of Protection in the case of an incapacitous adult.

Dr B was very clear that the best treatment for A was to place a Nasojejunal feed tube as urgently as possible. The tube is inserted via the nostrils, it is passed down into the oesophagus, into the stomach, into the jejunum. The proposal is that food will be introduced along with fluids through the tube. Initially A would be fed day and night. Once her situation had stabilised the plan is that she would be transferred to a unit where she could be involved in their day time programme and her feeding would then be undertaken almost exclusively over night.

She would, for these reasons, have to return to the general paediatric ward for over night stay. This it was thought would probably last for several weeks after the initial stabilisation period depending on how well and how quickly A progressed. Self evidently the first two weeks are crucial. The mechanism to be deployed involves inserting the NJ tube with a numbing spray down the nose perhaps with an oral sedative. Often neither is required and in the past A has cooperated with the insertion of an NJ tube. I pause there to interpose that the graphs of her weight whilst in hospital on the occasion she previously agreed to feeding by NJ tube showed a significant improvement in her weight.

The insertion, Dr B told me, could take place on the paediatric ward. Once the tube was inserted she would be taken to radiology where radiologists would manoeuvre the tube into the correct position. The initial procedure takes no more than about 5 minutes, it is then left in situ for a few hours and the patient may sometimes require up to an hour in the radiology department.

The history (which A disputes), of the previous use of an NJ tube, which took place between the 12^th July 2013 and the 6^th September 2013, appeared to show good tolerance to it, in the view of the professionals. The doctors consider that A pulled the tube out herself. A asserts that it was done by the nurses. It is again unnecessary for me to resolve that issue other than to say that the possibility of the tube coming out “accidently” or otherwise is relevant when considering any alternative to the recommendation of Dr B.

It is also important to emphasise that in the period between the 12^th July 2013 and the 6^th September 2013 A gained approximately 2 kilograms in weight, that being the only time she has gained weight with any consistency during the whole term of her hospital admission. Predictably, perhaps inevitably, her weight began to decline when the NJ tube was displaced. As Dr B says, it is reasonable to conclude from this that NJ tube feeding in the past has been effective and there is no medical reason for believing that it will not be effective in the future were it to be tolerated.

A has complained of pain with the NJ tube in place but whilst it is no doubt uncomfortable, her overall clinical presentation has been more consistent with discomfort, says Dr B, than pain itself. The wider proposal is that during NJ feeding A would have her IV fluids and intravenous medication gradually weaned as all of her fluids and nutritional food and medication would be administered to her via the NJ tube. It follows that if the NJ tube became dislodged for whatever reason it would have to be repassed as it would in effect be the only source of nutrition and hydration for A. It is also important that no oral foods or fluids are taken whilst A is being feed by NJ tube. I’m satisfied that in the past that has not been complied with.

The NJ procedure that Dr B proposes has the support of every doctor who has been asked to consider the case. Notwithstanding this, however, A’s Mother and A herself resist it strenuously. Having trawled the internet they propose a variety of speculative alternatives, none of which is supported by any expert opinion. Each of the options contemplated, however, has been carefully considered and scrutinised. Counsel for the Trust, Ms Cavanagh, has annexed a document to her skeleton argument headed “Benefits/Disadvantages Table”. It is a comparative analysis of

In this respect I would repeat the observations of Holman J in an NHS Trust v MB (A Child represented by CAFCASS as Guardian ad litem) [2006] 2 FLR 319. The preparation of such a list is an enormously useful discipline which assists both during the evidence, the submissions, and of course for the Judge in the preparation of his judgment. Holman J suggested that in cases such as this they should be part of “the standard preparation of a case”, I respectfully agree, noting, as he did, that the list can always be added to or amended in the light of the evidence as it evolves.

Dr B dealt in his oral evidence and in his report with the suggestion that there should be parenteral feeding via a central line. He told me that he did not support this as a form of treatment at all, predominately, because it is a treatment that is reserved for patients in extremis, usually where the gut is very seriously damaged and is unable to absorb food and nutrients. In those circumstances the options are very limited. A, however, has a perfectly normal gut which has been proven to absorb food and nutrients in the previous NJ feeding regime. He considered that as A was at risk in relation to the removal of lines which are inserted there is a risk that she might try to remove the central venous line which goes into the Vena Cava, which in such circumstances could lead to massive haemorrhage or death.

That to my mind speaks for itself but in addition to that grave obvious and unacceptable risk there are other potential complications including infection and in the medium term potential liver damage leading to possible liver failure. By contrast, the NJ feeding used long term and in a perfectly safe way has only a low risk of slight gastric erosion caused by the tube and potentially some discomfort falling short of pain during feeding, which if necessary, could be managed with mild analgesia. The balance of the two options is strikingly clear.

I have no doubt that this has been explained to the mother in clear and simple terms, it had been reduced to writing in a report. She had the benefit of a solicitor and extremely experienced counsel. Why in these circumstances with no expert evidence to support her alternative course and with Dr B saying in terms that it would be unethical to pursue it she continued to cleave to it as a possibility until so late in the day it is difficult to understand.

In evidence she did not pursue it with vigour but to my mind she did not wholly abandon it either. I found her reaction to this evidence and to Dr B’s evaluation of risk rather troubling. The preferred solution, as I understood it, advanced by the mother, was that there should be parenteral feeding by a PICC line. This also involves risks of infection subcutaneously, possible aspiration, and would not in any event deliver sufficient nutrients to A at this critical time.

Plainly this option too carried an unacceptable risk and could not in and of itself accomplish the medical objectives at this stage. What is disturbing of course is that the NJ tube feeding has already been established to work. It is illustrated most graphically by charts showing the weight gain to which I have referred. The mother had sight of them and still resisted it. She has in my judgment a seriously distorted perspective on the medical issues which are mirrored almost exactly by A herself.

The mother’s resistance to the only obvious course of treatment at a point where A has descended to a critical ‘red’ stage of malnourishment can only be interpreted as a dysfunctional understanding of her daughter’s needs, physically and emotionally. She is a lady who seems to me to be troubled psychologically, and I hope she will engage as soon as possible with appropriate experts to see if she can be helped. Despite all this I have no doubt that she wants the best for her daughter.

I approach the issues in the case from the starting point that there is a ‘strong presumption in favour of a course of action which would prolong life, but that presumption is not irrebuttable’: Kevin Wyatt v Portsmouth NHS Trust [2006] 1 FLR 554.

The ‘intellectual milestones that Wall LJ (as he then was) identified in that case remain a valuable guide and bear repetition:

I have been able to consider A’s own wishes as expressed in an email which I am told and accept that she typed out on a laptop in her hospital bed. Those wishes are expressed in the third person because as I understand it a template to assist her had been prepared by her solicitors, perfectly properly. She states amongst other expressed wishes: ‘A doesn’t want NG tube or NJ tube because she experiences pain, discomfort, chokes me when vomiting and was traumatic experience, it was like torture for her’.

“A doesn’t want to take Fortisip or Fortijuice, she either wants to eat or have PN because everything else has been exhausted and not tolerated or both eat and have PN”.

“If she is to stay in hospital she would like to go elsewhere, anywhere other than the Children’s Hospital, somewhere further away with no connections… because she doesn’t think that the Children’s Hospital is capable of curing her vomiting because she has been there too long without improvement and the doctors do not have her medical background correct. It is worrying because she has been here so long”.

“A didn’t binge eat or drink as much as is written down here, there has never been effortless vomiting and as Dr G hasn’t seen her eat or drink and A doesn’t know how she can say her vomiting is effortless”.

“A is very clear that the hospital clinicians don’t get the medical history right, or even what she does everyday. They don’t know her as a person and when she tries to correct them they look like they are making a note but don’t correct anything”.

“A is also concerned that the recent report written by Dr B and Dr G have far too many inaccuracies in it” (sic).

Dr G, the Consultant Psychiatrist, told me that she found A to be willing to discuss her physical health symptoms, but had shown no capacity to focus on her emotional feelings or the ‘powerless nature of her own situation’. Dr G told me that A presented as a much younger girl, sometimes petulant and child like. It was, she said, sometimes difficult to remember that she was approaching 16 years of age. Dr G told me that in certain aspects of her decision making A is able to understand issues, but she lacks a real appreciation that unless immediate action is taken that she will die. What struck Dr G most was A’s complete lack of fear or worry about her current health predicament “she does not appear to have any understanding of the severity of her predicament and denies being worried or fearful about it”, she told me.

She was very clear that A would benefit from input from the Child and Adolescent Mental Health Service and was of the view that she was suffering from ‘a very severe complex psychosomatic presentation’. In her view the components of this are: her severe and intractable effortless vomiting whenever food is ingested, her exhaustion, her reduced mobility to the extent she has required a wheelchair, and her pain. There is no evidence that she is suffering according to Dr G from eating disorder cognitions, but there is evidence she has severely disordered eating behaviours. Dr G was of the view that she would benefit from specialist services provided to her at X House, an annexe to the Children’s Hospital. Predictably A and her mother are resistant to this course, which is now part of the overall declaration of best interest that the Trust seek. A crucial aspect of the proposal involves “socialising therapy”, the object being to help A build up contact with her peer group and her time in school as her overall physical condition improves. It was part of the attraction to Dr G, at least as I perceive it, that X House would facilitate less parental contact (i.e. to the mother) compared to the paediatric wards, entirely due to the intensity of the therapeutic programme. It was intended such programme commenced after a period of approximately 2 weeks of intensive nutritional import by the NJ tube.

Surveying the wide canvass of medical and social issues and having particular regard to what A says to me and affording it proper weight and respect, it is nonetheless clear, in my view compelling, that A’s best interest require the declarations that the Trust seek both in relation to the medical treatment and the planned therapeutic support at X House thereafter.

To ensure that the procedure has the greatest chance of success particularly in its first two crucial weeks I think that it would be helpful if A, and her mother, both had a rest from each others company for a period. A’s mother has been in almost constant attendance now at the hospital for months. She is visibly exhausted which may be clouding her objectivity. In any event her resistance to the course proposed is likely to be an impediment to its success, which at this point is not a chance I am prepared to take. I have therefore authorised the suspension of contact for this period.

It is also clear that the relationship between the hospital, social services and A has become conflictual. I heard evidence that A requires decision making from an independent ‘authority figure’. It quickly became obvious that the figure should be the Judge. That led me to take two unusual courses:

I have sanctioned the use of reasonable force to ensure that the NJ tube is put in place. I do not make that declaration lightly. I firmly hope it is unnecessary but it seems to me that A’s situation is so extreme that I must do all I can to ensure that she has the best attempt of survival. I have also sanctioned sedation, if necessary. The Trust has requested that I grant an order permitting them to use reasonable force to prevent A leaving the hospital. I signalled in strong terms there was no prospect of such an application succeeding. There was no evidential basis for it, at the moment, and in the weeks ahead it is unlikely that A will even be able to walk unaided. That kind of order on a young person, indeed on any autonomous adult should, in my judgment, always require compelling and cogent evidence. Sensibly, the Trust withdrew its request. In all circumstances therefore I make the declarations set out and annexed to this judgment.

(DELIVERY OF FLUIDS, MEDICATION AND NUTRITION VIA NJ )

PERENTERAL FEEDING VIA CENTRAL LINE

ORAL FEEDING

PSYCHOSOCIAL TREATMENT AT X HOUSE

It is lawful to and in the best interests of A to have a naso-jejunal tube inserted and reinserted on any occasion that it is removed.

It is lawful to and in the best interests of A to receive fluids, nutrition and medications through a naso-jejunal tube.

It is lawful to and in A’s best interests to receive treatment and assessment by the Child and Adolescent Mental Health team at X House, Y Children’s Hospital.

It is lawful to and in A’s best interests to be restrained and/or for reasonable force to be used against her, only insofar as it is proportionate and necessary, to:

It is lawful to and in A’s best interests to have administered to her, for the purposes of facilitating the insertion and/or reinsertion of the NJ tube and the administration of fluids, nutrition and medication through the NJ tube, the following medications:

It is lawful and in A’s best interests for servants and/or agents of the Applicant to prevent and/or suspend and/or restrict and/or supervise contact between A and her mother, M, her father, P and her family members as advised by A Local Authority (who have care and control of the ward) following consultation by the social care team with the treating clinicians and/or as directed by the court whilst she is placed at the Y Children’s Hospital.

It is directed that A be placed at and shall remain as an inpatient at X House and/or ward Z, Y Children’s Hospital. The Applicant is authorised to detain A at X House and/or ward Z, at Y Children’s Hospital.

Permission to the staff of ward Z, and/or the staff of the Child and Adolescent Mental Health Team at the Y Children’s hospital and/or any treating clinician to remove any foodstuffs, fluids, drinks, medications or other items that may be ingested by A from her directly or from her personal belongings.

The declarations in this order and paragraph 8 above shall continue until the first to occur of the following events:

The matter shall be listed for a review of the declarations before Mr Justice Hayden on a date to be fixed not later than 12 weeks from this date (ELH 2 hours).To be listed in accordance with counsel’s availability. The clerk to Miss Cavanagh shall liaise with the clerk of the Rules and the clerk to Mr Justice Hayden to fix a date.

By 4pm on the 7 February 2014 the Applicant shall file with the court and serve upon the parties a statement from Dr B, Consultant Paediatric Gastroenterologist, setting out A’s progress as against the treatment plan and identifying any use occasions when the terms of this order that relate to reasonable force (paragraphs 4 and 5) have been used.

No later than 6 weeks after A is placed at X House, and in any event no later than the 24 March 2014 the Applicant shall file and serve a statement from Dr G, Consultant Child and Adolescent Psychiatrist setting out A’s progress as against the treatment plan and updating the court if there have been any use occasions when the terms of this order that relate to reasonable force (paragraphs 4 and 5) have been used.

The clerk to Mr Justice Hayden shall be notified by email (and thereafter the parties to this application) in the event that a general anaesthetic is administered to A in accordance with the provisions of paragraph 4 and/or 5 he shall be notified as soon as reasonably practicable after the administration of the anaesthetic.

Nothing shall be published which leads to the identification of the child concerned and the parties to this application including those clinicians responsible for the First Respondent’s treatment until further order of the Court.

Liberty to any party to apply to vary these declarations on notice to the other parties.

Costs reserved.