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Video-recording (life and death)

We’ve been having a lively debate about whether or not parents should be able to record their interactions with professionals, and there’s a piece over at the Guardian about it  http://www.theguardian.com/society/2015/jun/17/social-workers-under-scrutiny-parents-camera

 

I’ve today come across a Court of Protection case, decided by Newton J.

 

St Georges NHS Healthcare Trust and P 2015

Neutral Citation Number: [2015] EWCOP 42

https://www.judiciary.gov.uk/wp-content/uploads/2015/06/cop_khan_26.6.15.pdf

 

[There is also a Reporting Restriction Order in place, meaning that the family or patient should not be named. I had been nervous about the link above having a surname in it, but on making enquiries I’m reassured that it refers to one of the doctors involved, not the family surname]

 

This case involved a very ill man who had had a heart attack and due to a long period of time before being revived suffered hypoxic brain damage. There was agreement that if he had another cardiac arrest he should not be resuscitated.

The hospital had applied to Court for a declaration that they be allowed to withdraw treatment (renal replacement therapy) which would have the impact of causing the man to die. The family were opposed to this and were arguing that the man was showing signs of consciousness.  They were saying that he was in a Minimally Conscious State (MCS) and thus he could, though on a very low level, show some responses. The hospital opinion was otherwise and that the man had no responsiveness and thus no quality of life.

The bit of relevance for us is here:-

The family have always properly and steadfastly maintained and argued their position. But for their politely and cogently articulated stance, it may well have been that renal replacement therapy would have been stopped, and P would already no longer be alive. They endeavoured to support their efforts by the taking of video recordings of occasions when they said that P had responded to verbal communication. That position was strongly opposed by the Health Trust who contended concern about the privacy and dignity of other patients and offered the services of the Trust’s medical photographer. Surprisingly the Court was required to make a decision that they were (a) able to do so and (b) could rely in Court on those recordings. In fact those video recordings provided a watershed insight to the proper conclusion in this case. As I say, but for their persistence, and the consequent anxiety of the Official Solicitor I could have so easily concluded on inadequate evidence, as it transpired, a conclusion that would have led to P’s demise.

 

Breaking this down :-

 

A) The family said that they could see signs of response from the man, and the hospital disagreed

B) The family wanted to film the man, so they could prove that he was showing these signs of response

C) The Hospital opposed this, and the Court had to hear argument about it, and decided that the family could film him

D) The film proved what the family were saying, and were vital in the case

E) The man is still alive, because of that filming process

 

You can’t really get a stronger illustration than that.

 

As a result of the Judge seeing the video recordings, he ordered further assessment, that assessment concluded that the man was indeed in a Minimally Conscious State not a persistent vegetative state. Somewhat oddly, that conclusion led to the hospital asking for other treatments to be withdrawn.  (I can’t quite understand this myself, but the case had clearly got quite polarising)

The hearing has lasted five days over a considerably adjourned period, judgment being delivered on the 6th

 It is a very unsatisfactory way of conducting such a hearing. Having seen the very powerful and affecting video recordings of P myself on day 3 it became abundantly clear that further and proper assessment and enquiry was absolutely necessary and essential. As a result Helen Gill-Thwaites, a specialist occupational therapist, continued and carried out the further assessment using the internationally respected assessment process known as SMART. Additionally Mr Derar Badwan, a leading expert in neuro rehabilitation directed the optimum circumstances for that and his own subsequent opinion to be investigated and formulated. Their united opinion and evidence was that at this stage of assessment it was clear, as the family had always contended, that P was in a minimally conscious state. I confess I am very troubled that in apparent response to that expert opinion the Trust’s reaction (without issuing a further application) was to apply to withdraw a whole raft of other treatments. That inexplicable development seemed to me at best to illustrate the widening the gulf between the family and those who were treating P, at best a hardening of mind. That view was fortified further when it subsequently emerged during the course of evidence (when Dr Dewhurst resumed evidence) that Dr Khan, the consultant neurologist responsible for P’s treatment, had recently changed his mind and now considered that P was in a minimally conscious state and had emailed that view to the Trust’s solicitor. All counsel seemed unaware of that development; certainly the Court was, and it is disappointing that this important information should in fact surface in this way. I do not think this represents bad faith but a reflection of the litigation as a whole. As I have already made clear I do not doubt the very great sincerity of the consultants involved in the care of P, but having regard to the Court’s strong presumption in preserving the sanctity of life and of the overarching principle that should be borne in every case with this background it was a surprising development. The law regards the preservation of life as a strong fundamental principle.

 

The Judge describes what nearly happened here (and the absence of the testing process which is recommended in the guidance) as a ‘cataclysmic injustice’.   It is somewhat rare to see the word ‘cataclysmic’ used and to not immediately conclude that the author is  wildly over-stating things.  This is one of those rare occasions when it was in my opinion merited.  [Bracing myself now for my commentator Andrew informing me that it should be confined to natural disasters or large scale tragedies]

This nugget is astonishing – in these cases, the rate of mis-diagnosis (i.e hospitals deciding that a person is NOT in a Minimally Conscious State and getting that wrong ) is 40%. Forty per cent… Of something as vitally important as that.

I have been told in this and in other cases that misdiagnosis (of people who are said to be in a vegetative state but are in truth in a minimally conscious state) occurs in a remarkably high number of cases, the rate of misdiagnosis is said to be some 40%.

 

It is something of a wake-up call – if medical evidence can be wrong about something so vitally important as whether a man would have any awareness if treatment was withdrawn, then we need to be cautious about it when it is something which is less concrete and more speculative  (such as a person’s ability to change, or whether they might or might not sustain a separation from another person or abstain from substances)

 

It is a very interesting and moving case, and once I am sure that the link does not accidentally give away something that it should not, I will share it with you.

 

 

 

 

A tale of two Telegraphs

 

Two recent stories in the Telegraph about Court cases.

 

The first, here

 

http://www.telegraph.co.uk/comment/11412971/Why-dont-the-family-courts-obey-the-law.htmlr

 

is from a writer that you all know Christopher Booker.

 

Mr Booker’s story here is that a mother in care proceedings lost her child at an interim stage because of ‘one small bruise’ and was not allowed into the Court room during most of the hearings, and that this was because of their lawyers.

 

On a court order, the two boys were taken into care, and over the following months, through several court hearings from which the parents were excluded by their lawyers

 

Last April, the couple were summoned to a final hearing to decide their sons’ future. The mother was represented by lawyers she had been given by Women’s Aid, which works closely with the local authority. As an intelligent woman, studying for a university degree, she and her partner arrived early at the court, for what was scheduled to be a five-day hearing. They were armed with files of evidence and a list of witnesses they wished to call, all of which they believed would demolish the local authority’s case.

But the mother describes how they were astonished to be told by their lawyers that again they would not be permitted to enter the court. Half an hour later, the barristers emerged to say that the judge had decided that their two boys should be placed for adoption. There was no judgment for them to see, and no possibility of any appeal against his decision. This Wednesday the couple will have a final “goodbye session” with their sons, never to see them again.

 

 

Mr Booker names His Honour Judge Jones as the judge behind this story. [He doesn’t quite give him that courtesy, instead assuming that he is on first name terms with a Judge who he’s about to rip apart in a national newspaper]

 

Now, there are two distinct possibilities here.

 

  1. Everything that Mr Booker reports here is true.
  2. What Mr Booker reports is not what happened and something has gotten lost in the telling of the story.

 

As ever with Mr Booker, he doesn’t make it explicit that there’s a single source for his story, but I can’t see a second source anywhere. Now, that doesn’t mean that it won’t turn out to be true, but I’d feel happier when dealing with extraordinary claims to see confirmation of the story from more than one source.

 

We simply don’t know until we see the judgment from His Honour Judge Jones. In fact, if the latter of those two possibilities is true, we may not even recognise the judgment as relating to this case at all.

 

It would be utterly wrong, and utterly appealable, for a Judge to make an Interim Care Order removing a child from parents without letting them into the court-room, and utterly wrong, and utterly appealable for a Judge to make a Care Order and Placement Order without allowing the parents into the Court room and allowing them to have their opportunity to fight the case if they wished to. If this happened, it would be tremendously wrong.

 

If what Mr Booker says is what actually happened, then he is utterly right to rage against it and I would join him in his rage. If I was a betting man, my money would be on the second possibility, and that he has not been given a full and complete account of what happened.

 

HOWEVER, and I will be absolutely fair to him, if he had told the story of the case before HH J Dodds where the parties attended the first hearing and the Judge made three Care Orders in a five minute hearing, I would not have believed that either, and Mr Booker would have been right and I would have been wrong.

 

I would have said so had that happened. He is also right to draw attention to that Court of Appeal decision about HH J Dodds, and it does highlight that sometimes things happen in Courts that fly in the face of everything you believe and that really unfair things can happen to people. If it happens to you, it is small consolation that it is rare and shouldn’t happen, it must be utterly devastating. Some of the people who come to Mr Booker, or any of the other campaigners, are coming with completely truthful accounts of dreadful injustice, and it is important that they have somewhere to turn, someone who will listen to them.

 

As George Orwell said – We sleep safe in our beds because rough men stand ready in the night to visit violence on those who would do us harm.

 

And although I’m not asserting that Mr Booker or any of the campaigning groups are either rough men, or would be willing to visit violence on anyone, you hopefully get the general thrust of the point. In being willing to listen to the stories of injustice that people tell them, they provide a mechanism for injustice to come to light, and that is an important thing.

 

I hope that Mr Booker is wrong here, but I accept that he could be right, and if he is, it is important that people hear of it.

 

Sometimes Judges do behave in appalling ways. Sometimes social workers do too. So sometimes, the sort of stuff that Mr Booker rages about does happen, and when it does, he is right to be bloody cross. Even if I think that sometimes Mr Booker is the boy who cries wolf, there are wolves in the world, and that boy was eventually right.

 

If and when I see a case from HH Judge Jones that relates to Care Orders, involving Denbighshire Social Services, two boys and a bruise, I will update you. Perhaps Mr Booker is right. If he is, it is a scandal and I will commend him for bringing it to light. If he is mistaken, then no doubt there will be a correction and an apology, not least to a Judge who has been accused of acting in a way that would make anyone reading it think much less of him.

 

 

[Here is an idea, which I’m sure won’t be taken up – if a parent comes to a journalist with a story that sounds extraordinary about the way they were treated in Court, get the parent to sign an authority allowing the journalist to approach the solicitor representing them, and for the solicitor to read the proposed article and tell the journalist whether that’s an accurate depiction of what really happened, or if the facts have got a bit mixed up]

 

 

Second case

 

http://www.telegraph.co.uk/news/health/news/11412861/Judge-refuses-mothers-plea-to-treat-terminally-ill-son-saying-he-should-be-allowed-to-die.html

 

In which Mrs Justice Hogg, sitting in the Court of Protection made a declaration that the hospital could lawfully stop treating an 18 year old with a brain tumour, even though that withdrawal of treatment would end his life and his parents were arguing that the treatment should continue.

 

Now, this is a story which feels much more solid. It is easier to believe when reading it that what it says happens is what happened. (Booker’s story may well turn out to be true, but it has question marks over it that this one does not)

 

The hearing was in public, which makes it a lot easier for a reporter to put out a strong story with sources – in this case, there are quotations from the judgment and comments from both sides, and the report gives the sense of what a difficult decision this must be either way. It also has the sense of being the sort of thing that happens in the Court of Protection – these are the sort of decisions that have to be taken, the evidence heard and issues raised are consistent with the way one might imagine such a hearing to take place.

 

Again, until we get the judgment, it is difficult to analyse whether the Judge was right or wrong in making that decision – we simply don’t have enough of the key pieces of information or to see how the Judge balanced the competing arguments. So when it comes up, I will share it with you, and we can have the debate – hopefully it won’t be long.

 

It is hard not to have an emotional response however, and my sympathies on an emotional level are with the parents. I don’t think there tend to be many such decisions that go with the heart rather than the head (or with the parents rather than the medics) and I tend to think that the wishes of the family ought to carry rather more weight than they often seem to at the moment, as an overall criticism of these decisions rather than saying that the Judge in this particular case got it wrong.

 

It will be interesting to see how the Judge dealt with the right to life issue, article 2 being something that binds the Court as a public body, and that being an unqualified right. There are previous decisions which do sanction this withdrawal of treatment, largely connected to the right to die with dignity

 

It does make me somewhat uncomfortable that where a family want that for a person it is generally resisted, but when the medics want it and the family oppose it, it generally happens. Is the judiciary too deferential to the views of medical professionals? That’s a much wider debate.

Blood transfusions, jehovah’s witness and court of protection

The decision of the Court of Protection in Newcastle Upon Tyne Hospitals Foundation Trust and LM

http://www.bailii.org/ew/cases/EWHC/COP/2014/454.html

Readers may be aware that followers of the Jehovah’s Witnesses faith are staunchly opposed to blood transfusions and will not accept them for themselves, even if that means losing their life. There has been quite a lot of litigation in the past about children whose parents have that faith, who require blood transfusions. A somewhat uneasy accommodation has been reached whereby the parent won’t agree but won’t stand in the way of the Court making an order that the child must have a blood transfusion.

An adult Jehovah’s Witness is legally entitled to refuse blood transfusion for themselves. It may seem silly and reckless to us, but it is a central part of their belief and faith, and they are entitled to make that decision for themselves.

That leaves one gray area – what happens where an adult Jehovah’s Witness lacks capacity and then needs a blood transfusion if they are to survive? What should the Court decide is in their best interests?

Not sure there’s a right answer here, and I expect it might cause some debate in the comments section.

On 18 February, an application was made by the Newcastle upon Tyne Hospitals Foundation Trust for a declaration that it would be lawful to withhold a blood transfusion from LM, a gravely ill 63-year-old female Jehovah’s Witness. The application came into the urgent applications list at short notice. When it was made, the medical view was that LM might not survive for as long as a day in the absence of a blood transfusion and that even if one was given, she might still die. A decision had to be taken there and then. I took the view that it was not practicable or necessary for a litigation friend to be appointed.

In this case, the Judge made the following declaration

It shall be lawful for the doctors treating LM to withhold blood transfusions or administration of blood products notwithstanding that such treatments would reduce the likelihood of her dying and might prevent her death.

Sadly, LM died before judgment could be given

    1. This judgment concerns these questions:

 

    • Did LM (before she became unable to do so) have the capacity to make a decision to refuse a blood transfusion?
    • If so, did her decision apply to her later circumstances?
    • Alternatively, if the answer to either of the above questions was ‘no’, was the Trust’s proposal to withhold a transfusion in her best interests?

 

The Court heard from witnesses about LM’s capacity and her wishes and faith

    1. In this context, I heard from Mr R, who first met LM in 1975 and had known her ever since. He last saw her shortly before her admission. He brought letters from three other members of the congregation who knew her. Mr R described LM as a formerly active member of the congregation who fully subscribed to the tenets of the faith (including its opposition to blood transfusion) and had taught them to others, although she had become less engaged in recent years. Her beliefs on the question had been consistent. He says that if LM had been able to speak for herself she would have been distraught at the prospect of receiving a transfusion.

 

    1. Speaking on his own behalf, and expressing the united medical view, Dr C said that the evidence available to him suggested that during her time in hospital and up to 13 February LM had had capacity. There was no evidence that mental illness had interfered with her decision-making. He considered that her decision applied to her life-threatening situation, which was an unfortunate but natural progression from her underlying condition. He considered that her clearly stated views should be respected.

 

    1. Dr C said that the treating doctors intended to continue to withhold blood products, recognising that this compromised their ability to provide full care. LM would continue to receive full active medical care in all other respects in an attempt to bring her through until it became clear that all attempts were futile. At that point the team would act in her best interests as with any critically ill patient.

 

    1. The Trust’s submission was that LM had clearly made her wishes known even with knowledge of death. Alternatively, if it was a matter of best interests, the Trust did not wish to act against her wishes, being concerned to respect her individual dignity.

 

    1. Addressing the question of capacity, I find as follows:

 

1) Prior to the afternoon of 13 February, LM had the capacity to decide whether to accept or refuse a blood transfusion. There is no evidence that her underlying mental illness rendered her unable to make a decision (MCA s.2(1)). The presumption of capacity (s.1(2)) was not displaced and the criteria for capacity (s.3) were on the balance of probabilities met. I am satisfied that LM understood the nature, purpose and effects of the proposed treatment, including that refusal of a blood transfusion might have fatal consequences. 2) The decision taken by LM prior to her loss of capacity was applicable to her later more serious condition. There was no difference in kind and I am satisfied that she intended her decision to be effective in the circumstances that subsequently arose.

    1. In consequence, I find that LM made a decision that the doctors rightly considered must be respected.

 

    1. In the alternative, if LM had not made a valid, applicable decision, I would have granted the declaration sought on the basis that to order a transfusion would not have been in her best interests. Applying s.4(6) in relation to the specific issue of blood transfusion, her wishes and feelings and her long-standing beliefs and values carried determinative weight. It is also of relevance that a transfusion might not have been effective to save her life.

 

  1. The right to life (Art. 2 ECHR) is fundamental but it is not absolute. There is no obligation on a patient with decision-making capacity to accept life-saving treatment, and doctors are neither entitled nor obliged to give it   
  2.     The next issue was delicate and difficult – should there be a Reporting Restriction Order preventing LM’s real name being made public? All of the law on RROs relate to living persons and that made it uncertain as to whether an RRO could be made – the Judge took the pragmatic view that he would make the order and if anyone really wanted to litigate the issue then they could do so at a later stage
  3.  
  4.  
  5. The remainder of this judgment concerns an application for a Reporting Restriction Order made by the Trust on 24 February. At the hearing on 18 February I indicated that I would grant such an order subject to the proper procedures being followed, which eventually they were. I intended to formally make the order when handing down judgment on 26 February, but LM’s death intervened. Accordingly, I heard further submissions from Mr Speker and Mr Farmer about the appropriate course to take.
  6. The court has jurisdiction to make an order during the lifetime of a patient that will continue to have effect after death unless and until it is varied: Re C (Adult Patient: Restriction of Publicity After Death [1996] 1 FCR 605. The situation here is different in that the patient is no longer alive. The unusual circumstances raise interesting questions about the court’s jurisdiction to restrict the reporting after a person’s death of information gathered during proceedings that took place during her lifetime.
  7. It seems to me that the proper approach is to make an order that preserves the situation until the time comes when someone seeks to present full argument on the question. I will say no more than that for the present
  8. I make a Reporting Restriction Order preventing the naming of LM, and the medical and care staff who looked after her and the two Jehovah’s Witnesses who participated in the proceedings. It does not prevent the naming of the Trust or the hospital, nor discussion of the underlying issues or the court’s procedures. Anyone affected by the order may apply to vary or discharge it, whereupon its terms or existence will be looked at afresh.