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You are here: BAILII >> Databases >> Jersey Unreported Judgments >> In the matter of B (Medical) 14-Aug-2019 [2019] JRC 158 (14 August 2019)
URL: http://www.bailii.org/je/cases/UR/2019/2019_158.html
Cite as: [2019] JRC 158

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Capacity - application by the Minister for the Court to make a health and welfare decision for the recommended medical treatment of the First Respondent.

[2019]JRC158

Royal Court

(Samedi)

14 August 2019

Before     :

Sir William Bailhache, Bailiff, and Jurats Ronge and Hughes.

 

Between

Minister for Health and Social Services

Applicant

And

B

First Respondent

 

C (the Father)

D (the Mother)

Second Respondents

Advocate H. J. Heath for the Minister.

Advocate D. V. Blackmore for the First Respondent

Advocate D. J. Benest for the Second Respondents

JUDGMENT

the bailiff:

1.        The First Respondent is aged 29.  He is currently an in-patient at the Jersey General Hospital.  He reached his developmental milestones until the age of 2 years old when he developed developmental regression.  He is non-verbal and has a spastic tetraparesis.  He lost his language skills at 6 years old and used sign language until he reached the age of 12.  He has suffered from seizures since the age of 10 and while there was some delay in diagnosis, the recent clinical opinion from the specialist centre in the UK has concluded that his seizures are epileptic.  In 2013 he was diagnosed at Addenbrooke's Hospital with an undefined metabolic disorder.  In 2017 he was admitted to Chalfont Hospital for further investigation where an abnormal EEG confirmed significant cerebral dysfunction.  An MRI also showed disproportionate volume loss affecting the cerebellum. 

2.        In November, 2018, the First Respondent was admitted to the Jersey General Hospital suffering from possible urinary retention, dysphagia, constipation and increased seizure activity.  He was treated with a continuous IV dextrose infusion and a low close protein nasogastric ("NG") feed. 

3.        On 2nd January, 2019, the nasogastric tube came out and a decision was made in consultation with the Second Respondents to have a trial of oral feeding to assess if he would be able to meet his nutritional requirements with a view to discharge home.  In early February 2019 the speech and language therapist expressed the opinion that his nutritional needs were not being met through oral feeding and the NG tube was re-inserted. 

4.        The First Respondent was transferred to the National Hospital for Neurology and Neurosurgery at University College London on 4th March for further assessment.  During his attendance there, his seizure activity was subject to investigation and found to be very frequent.  It was decided as a result to increase his anti-epileptic medication and over the following weeks his seizure activity decreased.  However, during admission to that hospital, he developed sepsis requiring a transfer to ITU. 

5.        On 24th April, the First Respondent was transferred back to the Jersey General Hospital and since that date he has been receiving nutrition and hydration both orally and via an NG tube. 

Nature of Application

6.        The Minister has applied to the Court under Part 4 of the Capacity and Self-Determination (Jersey) Law 2016 ("the 2016 Law") for the Court to make a health and welfare decision for the recommended medical treatment of the First Respondent.  It is proposed that he have a percutaneous endoscopic gastrostomy ("PEG") feeding tube fitted.  The Minister asserts that this would be in his best interests.  The Second Respondents do not agree to this procedure being done.  An independent capacity advocate, Ms Patricia Winchester has been appointed to express a view as to whether the procedure would be in the First Respondent's best interests, and she is assisted by Advocate Blackmore.  In short the Minister is seeking a declaration and/or a determination that:-

(a)       The First Respondent lacks capacity to consent to the medical treatment for a PEG feeding tube to be fitted; and

(b)       He should have a PEG feeding tube fitted in his best interests. 

The Law

7.        In making a decision on this application, the Court must have regard to the core principles set out in Article 3 to 6 of the Law: 

"3.  Principles to be applied

(1)       In the application of this Law -

(a)        a person must be assumed to have capacity, unless it is shown that the person lacks capacity in the sense given to that expression by Article 4;

(b)        a person is not to be treated (under Article 5 or otherwise) as unable to make a decision -

(i)         unless all practicable steps to enable that person to make the decision have been taken without success, nor

(ii)        merely because the person makes an unwise decision;

and

(c)        an act done, or a decision made, on behalf of a person lacking capacity must be done or made in the person's best interests.

(2)       Without derogation from the generality of the principle stated in paragraph (1)(c), before an act is done or a decision is made which is restrictive of the person's rights and freedom of action, regard must be had to whether the purpose for which the act or decision is needed can be achieved as effectively in a less restrictive way. 

(3)       In paragraph (1)(b) and Articles 2, 4, 5 and 6, "decision" means a decision which is not excluded by the operation of Article 7.

4.  Lack of capacity

(1)       For the purposes of this Law, a person lacks capacity in relation to a matter if, at the material time -

(a)        the person is unable to make his or her own decision in relation to the matter (as further provided by Article 5); because

(b)        he or she suffers from an impairment or a disturbance in the functioning of his or her mind or brain.

(2)       For the purpose of the application of paragraph (1)(b) it does not matter -

(a)        whether the impairment or disturbance is permanent or temporary; nor

(b)        what the cause of the impairment or disturbance may be.

(3)       Lack of capacity cannot be established merely by reference to -

(a)        a person's age or appearance; or

(b)        a person's condition, or an aspect of a person's behaviour, which might lead others to make unjustified assumptions about the person's capacity.

(4)       In proceedings under this Law or any other enactment, the question as to whether a person lacks capacity for the purposes of this Law must be decided on the balance of probabilities.

5.  Inability to make a decision

(1)       For the purpose of the application of Article 4(1)(a), a person is unable to make his or her own decision if he or she cannot -

(a)        understand information relevant to that decision;

(b)        retain the information for a period, however short, which is sufficient to make the decision;

(c)        use or weigh the information in making the decision; or

(d)        communicate the decision (whether by speech, sign language, or any other means).

(2)       Information relevant to a decision includes information about the reasonably foreseeable consequences of deciding one way or another, or of failing to make the decision.

6.  Best interests

(1)       For the purposes of this Law, a determination as to what is in the best interests of a person lacking capacity -

(a)        must not be made merely on the basis of -

(i)         the person's age or appearance, or

(ii)        any other aspect of his or her condition or behaviour;

(b)        must not be made unless, so far as reasonably practicable, the person lacking capacity has been permitted, encouraged and supported to participate as fully as possible in any act done for or any decision affecting that person; and

(c)        must consider all relevant circumstances, including in particular the matters set out in paragraphs (2) to (4).

(2)       Such a determination must include consideration of whether it is likely that the person lacking capacity will at some time have capacity in relation to the matter in question, and if so, when that is likely to be.

(3)       Such a determination must include consideration, so far as the following matters are reasonably ascertainable, of -

(a)        the past and present wishes and feelings of the person lacking capacity as to the matter in question (including in particular any advance decision to refuse treatment or other written statement made by that person at a time when that person did not lack capacity);

(b)        the beliefs and values of that person which would be likely to influence that person's decision if that person did not lack capacity;

(c)        any other factors which that person would be likely to consider if that person did not lack capacity.

(4)       Such a determination must take into account, if it is practicable and appropriate to consult the following persons, the views of -

(a)        anyone named by the person lacking capacity as someone to be consulted on the matter in question or matters of that kind;

(b)        anyone engaged in caring for that person or interested in that person's welfare;

(c)        any person on whom authority is conferred under a lasting power of attorney granted by that person and applicable to the matter in question; and

(d)        any delegate appointed by the Court under Part 4.

(5)       A determination relating to life-sustaining treatment shall be not regarded as being in the best interests of a person lacking capacity if the determination is motivated by a desire to bring about that person's death.

(6)       In the case of an act done or decision made under this Law by a person other than the Court, it is sufficient if (having complied with the requirements of paragraphs (1) to (5)) the person reasonably believes that the act or decision is in the best interests of the person lacking capacity on whose behalf the act is done or the decision is made."

8.        There is specific provision for health and welfare issues at Article 27:-

"27.    Specific provision which may be made under this Part as to P's health and welfare

(1)       Subject to paragraph (2), the power which may be exercised by the Court or by a delegate in relation to P's health and welfare includes in particular the power of -

(a)        deciding where P is to live;

(b)        deciding what contact, if any, P is to have with specified persons; and

(c)        giving or refusing consent to the carrying out or continuation of treatment by a person providing health care for P.

(2)       Only the Court (and not a delegate) may -

(a)        prohibit a named person from having contact with P;

(b)        direct a person providing health care for P to allow a different person to take over that responsibility; or

(c)        refuse consent to the continuation of life-sustaining treatment."

9.        Article 24 contains the general power of the court to make declarations and decisions as to whether a person lacks capacity, and in those circumstances the lawfulness of any act done or proposed to be done in relation to that person.  Applications to the court for the exercise of its powers under Article 24 are provided for by Article 25.  The Minister does not have statutory locus standi to bring the application under Article 25(1), and accordingly asks for permission to bring the application pursuant to Article 25(2) of the 2016 Law.  The Court gives that permission.  We are quite satisfied that the Minister is acting in what he believes to be the best interests of the First Respondent and it is right that he should have the opportunity therefore to seek the Court's guidance under Article 24. 

10.      The Court is charged on an application of this nature to assess first whether a person lacks capacity in relation to the particular matter.  If that person does not lack capacity, then he can make his own decision.  (We use the male pronoun and adjectives for convenience - obviously the principles set out apply regardless of gender). 

11.      If, however, he lacks capacity then the determination as to what is in his best interests must be made in accordance with Article 6.  It is noteworthy that the rights conferred by Article 8 of the European Convention on Human Rights clearly apply. 

12.      The decision of the Supreme Court in Aintree Hospitals NHS Foundation Trust v James [2014] AC 591 is particularly helpful because the 2016 Law follows closely upon the Mental Capacity Act 2005.  Referring to section 4 of that Act, equivalent to Article 6 of the 2016 Law, Baroness Hale of Richmond, giving a judgment with which the other members of the court agreed, said this: -

"24. The approach follows very closely the recommendations of the Law Commission in their report on mental incapacity (1995) (Law Com No 231) on which the 2005 Act is based.  It had been suggested in Re F [1990] 2 AC 1 that it might be enough if the doctor had acted in accordance with an accepted body of medical opinion (the Bolam test for medical negligence; see Bolam v Friern Hospital Management Committee [1957] 1 WLR 582).  However, as the Court of Appeal later recognised in  Re S (Adult Patient: Sterilisation) [2001] Fam 15, there can only logically be one best option.  The advantage of a best interests test was that it focussed on the patient as an individual, rather than the conduct of the doctor, and took all the circumstances, both medical and non-medical, into account: paras 3.26, 3.27.  But the best interests test should also contain "a strong element of "substituted judgment"" (para 3.25), taking into account both the past and the present wishes and feelings of the patient as an individual, and also the factors which he would consider if able to do so: para 3.28.  This might include "altruistic sentiments and concern for others"; para 3.31.  The Act has helpfully added a reference to the beliefs and values which would be likely to influence his decision if he had capacity.  Both provide for consultation with carers and others interested in the patient's welfare as to what would be in his best interests and in particular what his own views would have been.  This is, as the explanatory notes to the bill made clear, still a "best interests" rather than a "substituted judgment" test, but one which accepts that the preferences of the person concerned are an important component in deciding where his best interests lie.  To take a simple example, it cannot be in the best interests to give the patient food which he does not like when other equally nutritious food is available. 

...

26.      Beyond this emphasis on the need to see the patient as an individual, with its own values, likes and dislikes, and to consider his best interests in a holistic way, the Act gives no further guidance...".

13.      As Advocate Benest submitted, on the issue of giving life sustaining treatment, Baroness Hale stated this:-

"35. The authorities are all agreed that the starting point is a strong presumption that it is in a person's best interests to stay alive.  As Sir Thomas Bingham MR said in the Court of Appeal in Bland's case [1993] AC 789, 808 "a profound respect for the sanctity of human life is embedded in our law and our moral philosophy".  Nevertheless, they are also all agreed that this is not an absolute.  There are cases where it will not be in a patient's best interests to receive life sustaining treatment." 

14.      The Supreme Court made two other points of importance which we also accept.  The first is that in the assessment of wishes and feelings of the incapacitated person, which is an extremely important aspect of the best interests analysis, it is a subjective and not an objective assessment which gives weight to personal autonomy:-

"45. Finally, insofar as Sir Alan Ward and Arden LJ were suggesting that the test of the patient's wishes and feelings was an objective one, what the reasonable patient would think, again I respectfully disagree.  The purpose of the best interests test is to consider matters from the patient's point of view.  That is not to say his wishes must prevail any more than those of a fully capable patient must prevail.  We cannot always have what we want.  Nor will it always be possible to ascertain what an incapable patient's wishes are.  Even if it is possible to determine what his views were in the past, they might well have changed in the light of the stresses and strains of his current predicament.  In this case, the highest it could be put was, as counsel had agreed, that "it was likely that Mr James would want treatment up to the point where it became hopeless".  But insofar as it is possible to ascertain the patient's wishes and feelings, his beliefs and values or the things which were important to him, it is those which should be taken into account because they are a component in making the choice which is right for him as an individual human being."       

15.      The second point the Supreme Court makes was at paragraph 39, where it was emphasised that one must look at the question of welfare in its widest sense:-

"The most that can be said, therefore, is that in considering the best interests of this particular patient at this particular time, decision makers must look at the welfare in the widest sense, not just medical but social and psychological; they must consider the nature of the medical treatment in question, what it involves and its prospects of  success; they must consider what the outcome of that treatment for the patient is likely to be; they must try to put themselves in the place of the individual patient and ask what his attitude to the treatment is or would be likely to be; and they must consult others who are looking after him or interested in his welfare, in particular for their view of what his attitude would be.

16.      Advocate Benest rightly put before us case law which referred to the need to give particular weight to the person's wishes and feelings to the extent these could be identified.  In Briggs v Briggs [2016] EWCOP 53, a case concerning the withdrawal of clinically assisted nutrition and hydration, Charles J said this:-

"56.    In my view, the factors that will give indications as to what the individual P wants include the interests of other people who P would have been likely to take into account and so, for example, many if not most Ps when they had capacity would have taken into account their relationships with others (e.g. spouse and children), how they think that their children should be parented and the impact on those closest to them of what they decide to do." 

17.      The views of a patient's family (particularly family members who have cared for him and hopefully will care for him, and who are close to the individual and know him best) are also extremely important to the best interest decision-making process.  They can play a crucial role in assisting the court to understand the individual and what his past wishes and feelings were, and what his beliefs and values would be if he now had capacity; but their views are also relevant as persons to be consulted in their own right - they are people who are "interested" in Ps welfare. 

18.      With that commentary on the Law and the English authorities, all of which seem to us to be very helpful in this connection, we now turn to the evidence and the decisions which we have to make. 

Evidence

19.      We deal first with the evidence as to whether the First Respondent has capacity to make this decision for himself.  We heard from Dr Gibson the Consultant Neurologist at the General Hospital who has been overseeing the First Respondent's care for the last 5 years.  He told us that he had never felt that the First Respondent had any real capacity as to his wishes.  He did not think that his patient had any understanding of language or an ability to express himself, and that had been so from the outset.  He did not think his patient would be able to assess concepts of risk and benefit. 

20.      The speech and language therapist Ms Patricia Williams told us that she first had an involvement with the First Respondent in 2017.  He displays primitive communications - he may smile or move a hand, but these would be what she described as pre-verbal communications - different from a cognitive understanding.  He would not follow commands like "point to the window"; nor would he be able by gesture to communicate stop or yes or no.  If she asked him whether he was hungry, he would not understand. 

21.      When his mother gave evidence, she also said that he did not understand complex concepts like anaesthetics or PEG.  He could not make decisions for himself.  She considered that she should make them as his mother, but, while we absolutely respect that point of view which is wholly understandable, that is not what the 2016 Law provides. 

22.      The Court turns next to the evidence of best interests.

23.      Dr Gibson set out the basic case of the Minister.  He explained how the hospital authorities had not been able to achieve a sufficient intake of food orally for the First Respondent's needs whilst he has been in hospital.  Accordingly the NG tube had proved to be necessary to enable him to have sufficient food and liquid intake to sustain him.  There were a number of drawbacks with the NG tube.  The first was that it was sometimes dislodged; the First Respondent could dislodge it himself by a quick movement of his hand, whether because the tube was irritating him in some way, or simply accidentally.  Whenever it had to be replaced, there was always a risk of aspiration, where food and drink might end up in the lungs and not in the gut.  There was then a risk of pneumonia from aspiration and indeed the First Respondent had had two episodes recently when he had been very chesty and needed antibiotics.  Furthermore, although he can take medication when he is well, he cannot take it easily when he is not, and this increases the risk of seizures.  The likelihood of sudden death from epilepsy increases if the medication is not taken.  Thirdly, there was the problem that if food taken orally became stuck, the First Respondent would have trouble breathing, and this would be very uncomfortable.  Furthermore, for as long as he remains on the NG tube, the First Respondent cannot leave hospital.  On the other hand, with a PEG, he should be able to do so and this would not stop him from eating orally all the things which he enjoys. 

24.      Dr Gibson was aware of the fear of the parents of the PEG tube, but he said that it was a safe and secure system for feeding people.  It was comfortable, normally sitting under the clothing so it could not be removed by accident.  By contrast, the First Respondent has been pulling out the NG tube every week or so.  Because of the risks of replacing the NG tube, it had been necessary to x-ray the First Respondent's chest on a fairly regular basis - he has had 14 x-rays since February, and ionisation at this rate for a young person would provide a long-term risk.  There is no need to x-ray with the PEG inserted. 

25.      Dr Gibson was asked about mortality rates from the insertion of a PEG, which in the best interests assessment of 31st May, 2019, was put at between 5% and 30%.  He thought that the risk to the First Respondent was much less than 5% as he is a young person.  He accepted that there were higher mortality rates for older people or for those suffering from cancer.  The PEG tube also had the advantage that it rarely needed changing, but once the track is there it is in any event easy to put another one in. 

26.      In summary, the NG tube carried a risk of aspiration, would regularly need to be replaced, and would give discomfort from the tube in the nose and down the throat.  Leaving that in place would require the First Respondent to stay in hospital.  By contrast, the insertion of the PEG would enable fluids and food to be provided consistently, and also medication.  There was a good chance that the First Respondent would be able to go home. 

27.      Ms Williams told us that the First Respondent found swallowing difficult.  He has a restricted tongue and lip movement, and there is as a result a risk of aspiration as his muscles over the pharynx get very tired.  She agreed that food was a great pleasure to the First Respondent, but not when it goes down the wrong way, which is not infrequent with him. 

28.      Dr Taylor Goh, as the independent speech and language therapist, explained how the First Respondent had difficulty triggering a swallow.  If food then escaped before the swallow, it might go into unprotected airways and the First Respondent then became vulnerable to chest infection. 

29.      Dr Taylor Goh, had prepared her report not only from a review of the documentation which she had been sent but also a review of film footage during a 5 day recording of oral intake between 5th and 9th July, 2019.  It is unnecessary to go into great detail as to what she observed, but her opinion was clear.  Asked the question as to whether she considered it is currently possible for the First Respondent to meet his daily nutritional, hydration and medication requirements orally, she said:-

"[His] swallowing ability is clearly impacted by his underlying medical status and whilst his overall health and wellbeing would be positively affected by 1:1 nursing this would not enable him to meet his daily nutritional, hydration and medication requirements orally.  As stated in point iii it is possible that in the foreseeable future he would be able to have small amounts of modified textured food and fluids for pleasure only.  In order for this to be possible all those who assist him with feeding need to undergo training by the speech and language therapist and have their level of competency assessed and approved." (emphasis added) 

30.      Asked whether she considered that in the foreseeable future the First Respondent would be able to meet his daily nutritional hydration and medication requirements orally, she said that in her opinion this would not be achievable. 

31.      The First Respondent's mother gave evidence before us.  We were all significantly impressed by her love for her child and by the level of care which she has so obviously heaped upon him over many years.  Whilst he has been in hospital these last few months, she has gone in to see him as often as permitted by the hospital between 3pm and 8pm every day, those being the relevant visiting hours. 

32.      In summary, the mother's evidence amounted to this.  First of all the medical authorities had made numbers of bad mistakes from time to time so far in providing care to the First Respondent.  She no longer trusted them, and indeed she rather took the view that this was a test case which the doctors were bringing, simply because they could.  She did not think they were well motivated and she thought some of them were incompetent. 

33.      Her second concern was that she had carried out numbers of investigations into the use of the PEG feeding tube, and she was aware that it carried risk.  It was an invasive procedure which was unnecessary.  She emphasised that if it were needed, she and her husband would want the First Respondent to have that procedure carried out.  Indeed she said that her daughter had died when they did want a PEG tube to be fitted, but it was not.  She told us in her evidence that in January this year her son was eating normally.  90%-95% of the time he could eat perfectly well.  He picks up food himself with his hands and chews everything.  His parents cut up that food obviously, but he likes in particular fruit and vegetables.  In her view, her son did not need the NG tube.  He was able to feed orally and she was very willing to give him meals 7 times a day, each meal lasting approximately 25 minutes. 

34.      Her third objection dealt with the question of risk.  She said that she knew her son well, and that he had struggled considerably with an ingrowing toenail.  That had taken some 3½ years to mend and she was very worried that this major operation to insert the PEG tube would not heal and he would suffer greatly. 

35.      We have referred above to the oral evidence we have received.  We also have reviewed an amount of written evidence, including in particular the expert reports of Dr Mabel Blades, an independent dietician, and Dr Timothy Bowling, an independent gastroenterologist. Both reports support the conclusion that it is in the First Respondent's best interests to have a PEG fitted.

Decision

36.      Having considered the evidence set out at paragraphs 19 - 21 above, the Court was entirely persuaded that the First Respondent does not have capacity at the moment. 

37.      We have considered whether it is likely that the First Respondent will ever have capacity in relation to the matter in question, and, with all allowances for the mother who gave her evidence clearly and well, we regret to say we do not think it is likely there will ever be a sufficiently significant improvement that the First Respondent will have capacity to take complex decisions of this kind.  Even if he does make that improvement, it will not be in a sensible timeframe for him: it will take at least 6 and maybe 12 months to get to the yes/no stage of communication.  However, we think it is highly unlikely that he could make any substantial contribution to the decision even in 6 months' time, and even if all the work is done. 

38.      We are satisfied that every reasonable effort has been made to encourage the First Respondent to participate as fully as possible in the treatment which he needs. 

39.      We have had regard to the checklist provided in Article 6 of the 2016 Law.  As to Article 6(3), we think it is reasonable to assume that the First Respondent would want, if possible, to rid himself of an uncomfortable NG tube.  We are satisfied in addition that his present wishes and feelings would be to go home if that is at all possible, where he would have greater access to his parents and that this is not possible for as long as the NG tube is his method of feeding.  We believe that the Second Respondents are people whose beliefs and values would be likely to influence the First Respondent if he did not lack capacity, and we have anxiously considered the views which have been expressed in evidence by the mother and by both of them in their submissions to the Court through Advocate Benest.  We accept Advocate Benest's submission that the parents know the First Respondent better than anyone.  They have experienced everything with him and they certainly know how he has reacted in the past.  We are sure the medical authorities would join us in saying there is great sadness that the parents feel they have not been adequately listened to, and that the doctors have made some mistakes in the past.  Advocate Benest submitted that all the parents can do in these circumstances is bring to the Court's attention their own love and compassion for their son, and the Court has no doubt about that at all. 

40.      The evidence before us is that the First Respondent does experience pleasure and pain, and he enjoys some particular foods.  Pleasure from eating is one of his few enjoyments in a life which has become extremely limited and constrained.  When he is able to eat orally, we have no doubt that that does give him pleasure, but there are occasions when it is too difficult for him and when he cannot do so.  When it goes well, we also recognise that this is an important aspect of his family life with his parents.  In our judgment, the fact that a PEG is fitted does not mean that this pleasure will be removed from him.  Dr Gibson was clear in his evidence about that, and we see no reason why food and liquid nourishment introduced through the PEG cannot be supplemented by oral intake of food, which will enable the family life with his parents to continue.  Indeed, if it is known that there is no risk of malnutrition from oral eating, some of the pressure in those arrangements may be removed and indeed this might enhance that aspect of family life.  We quite understand why the parents take the view that in the best interests decision-making process which the medical authorities have undertaken, they have not placed much emphasis on this aspect of oral eating - it has been regarded in a medical and nutritional sense, but not in an emotional sense.  Accepting that there are some grounds for that criticism, we nonetheless think that the introduction of the PEG will not prevent the family life continuing as previously, and indeed, because the introduction of the PEG will enable the First Respondent ultimately to go home, family life will be enhanced. 

41.      We have considered carefully the objections which the parents have put forward as to the First Respondent's medical best interests.  We entirely accept that their concern is that the potential risk to their son is greater than the medical evidence currently suggests, and they rely upon the likely complications associated with the PEG wound, including the history which their son has of wounds taking a very long time to heal, as was the case in relation to infection following a toenail removal.  We accept that they are worried about the recent diagnosis of sepsis and the adverse impact of this condition on his ability to swallow, and also that because he is largely bedbound without significant physiotherapy input, he appears to be losing strength and muscle mass.  Having considered all the evidence, our view on these matters is that we do not have sufficient information to be satisfied on the balance of probabilities that the delay in the healing of the wound for the toenail removal is likely to be repeated with the PEG.   

42.      We do not accept the mother's view of the motivation of the medical authorities, whose evidence was given carefully, sensitively and well.  We are in no doubt that if the PEG settles and heals, that will be in his best interests.  We also noted when she was giving evidence that the mother's eyesight is not good, which in relation to oral feeding is likely from time to time to cause a difficulty. 

43.      Of course it remains a possibility that the medical procedure will not go as well as is anticipated by the authorities.  That is a risk which is carried with all medical procedures.  We entirely accept that the mother is genuine in her concerns.  However, recognising as we do that there is a distinction between what the patient would want and what the medical evidence objectively suggests is a good thing, we nonetheless accept that the First Respondent, noting his parents' concerns, would want to take the risks which the medical authorities describe as relatively minimal in order to have such a substantial increase in his quality of life.  This is an extremely difficult decision, but, having resolved that the medical expert opinion is rational in its anticipation of the advantages which the procedure will bring, we think that the patient himself would want to take such relatively minor risk as is envisaged in order to secure those advantages.  

44.      We have considered the submissions of Advocate Blackmore on behalf of the Independent Capacity advocate for the First Respondent that this is not just a case of parental disagreement with the treatment advice of one consultant.  Three different experts have said that a PEG is necessary.  He has been in hospital long enough.  This is the least restrictive option.  We understood that submission to be made in the context of what the First Respondent would want, if he had capacity. Advocate Benest accepted in his closing speech that the fact that the Minister had not followed proper process would not be conclusive if we were satisfied that the First Respondent did not have capacity presently to make this decision, would not be likely to have that capacity in the foreseeable future, or at any rate within his own timescales, and that, notwithstanding these issues which have been canvassed, we considered on the balance of probability that the procedure ought to be carried out.  That is indeed the process which we have adopted, and why we have reached the conclusion we have. 

45.      Having considered all the evidence, our view is that in this case there is one feature which is of "magnetic importance" in influencing or determining the outcome.  This was the expression adopted by Thorpe LJ, where he contrasted peripheral factors in the case from the central factor or factors.  The central or magnetic feature is that the overall risk, while it is there and exists, is small compared with both the risks of continuing indefinitely with the NG tube and the substantial gain to be achieved if the procedure is successful as the medical authorities predict, a gain which will be reflected in a marked improvement in the First Respondent's quality of life. Accordingly, we make the determination requested by the Minister that the insertion of a PEG is in the best interests of the First Respondent. 

46.      We would not wish to conclude this judgment, however, without expressing some criticisms of the process which the Minister has adopted. 

47.      We were very surprised to hear Dr Gibson say in his evidence when cross-examined by Advocate Benest that he had no great knowledge of the 2016 Law and that indeed he had not read it.  This was in part also reflected by his evidence when he said "Ideally it would be better to have [the First Respondent's] wishes.  Food is part of his pleasure, such as it is."

48.      The best interests decision is recorded in a document dated 31st May, 2019, albeit the decision was taken on the day before.  The document is notable for two reasons.  First of all, there is a heading "Persons views and steps taken to enable and support decision-making".  This part of the report then describes the views which Ms Williams has expressed in relation to the First Respondent - also the views of Rosalind Angier, another senior speech and language therapist.  However, there is no obvious attempt to identify what the First Respondent's wishes would have been, had he been able to express them, and that of course is right at the centre of the decision-making process envisaged by the 2016 Law. 

49.      Secondly, it is be noted that no independent capacity advocate was requested in relation to this particular decision.  That was the position notwithstanding that the risks of the procedure were identified as involving mortality risk of between 5% and 30% depending on any pre-existing comorbidities, and notwithstanding that the document records that the parents do not agree with the proposed procedure. 

50.      Importantly, the form indicates that the best interests decision was considered on 30th April, 2019, when three professionals were present - the medical associate specialist Dr Croft, the Corbière Ward nurse manager and Ms Angier, the senior speech and language therapist.  The plan as reflected in that multi-disciplinary meeting reflected an agreement that the First Respondent required a PEG to maintain his nutritional support and medication administration.  The risks and benefits were set out in part, and the document concludes:-

"Decision-making paperwork not completed or sent at this time.

Outstanding:

Meeting with parents to inform of decision to insert PEG

Formal capacity assessment

Further professional discussion."

51.      Following that multi-disciplinary meeting, the ward nurse manager met with the mother on 8th May and gave her a copy of the care management plan, along with a letter requesting feedback.  On 25th May she asked the mother if she had feedback in relation to the care plan, and a specific reference was made about inserting a PEG to manage his nutrition, hydration and administration of medicines consistently.  The mother immediately objected and requested that it was documented in the medical notes, which was done.  The best interests decision document records that a professional meeting took place on 30th May when a decision was made to insert the PEG, and the same day the ward nurse manager met with the parents and informed them that a decision had been made in the First Respondent's best interests to insert the PEG, whereupon both parents voiced objections. 

52.      It is apparent from this process that the medical authorities did not follow closely the guidance which the 2016 Law sets out, nor did they have regard to the guidance which is to be found in English case law on similar statutory provisions.  Indeed, Dr Gibson, as we said, had not read the 2016 Law.  The impression we are left with is that the professionals made a best interests decision on objectively rational best interests grounds, without having sufficient regard to the wishes of the patient.  They knew best what was good for him - so they might, but that is not what the 2016 Law requires.  An important part of ascertaining the patient's wishes was to identify the views of the parents.  Unfortunately, we are left with the impression that there was a tick-box approach to obtaining the parents' views, perhaps in the knowledge that the parents would be unlikely to acquiesce in what was proposed.  We understand that possibly the mother had expressed her reservations about a PEG process during the closing months of 2018, and indeed there was some difficulty from time to time between her and the medical staff in the hospital when she expressed her views, perhaps rather forcefully, in relation to the treatment which her son was getting.  It seems to us that it would have been better if the parents had been invited to the best interests decision meeting.  It would have enabled the medical authorities to express carefully the reasons for their recommendations, and it would have enabled the parents to have expressed carefully their objections including both the medical and emotional points which they wished to raise.  It would seem from the paperwork that for all practical purposes the best interests decision had been taken several weeks before, and it was then simply a question of completing the paperwork. 

53.      In making these criticisms, we do wish to make it clear that we are not advancing any professional criticism in terms of the rationality of the decision or indeed of the advice and care for the patient which lay beneath it.  Indeed, if we had any such concerns, we would not have authorised the procedure in question.  The issue is more one of internal hospital administration and process so that it is consistent with the letter and the spirit of the legislation which requires the views of the patient to be identified where possible, which almost certainly will involve identifying and respecting the views of the immediate family.  Proceeding in that way does not necessarily mean that the best interests decision will reach a different conclusion, but it should mean first of all that the family is better placed to understand what is being proposed and secondly that at least in some cases the medically based best decision will not in fact turn out to be the best decision in the interests of the patient in accordance with the 2016 Law.  This is very difficult territory, but we earnestly recommend that the hospital authorities give some further thought to these comments for use in the future. 

Authorities

Capacity and Self-Determination (Jersey) Law 2016.

European Convention on Human Rights

Aintree Hospitals NHS Foundation Trust v James [2014] AC 591

Mental Capacity Act 2005

Briggs v Briggs [2016] EWCOP 53


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