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Foul and Burdensome Treatment


Posted by Dr No on 16 June 2012

catch_22.jpgThere is no doubt that the treatment ordered by the Court of Protection, and now to be forced upon E, a critically ill anorexic in her thirties, will be not only foul and burdensome, but intensive and extended too, perhaps for a year or more, providing she does not die in the meantime. For E, the treatment is likely to unspeakably foul, for she appears to have conflated the invasive nature of forced feeding, not to mention mechanical ventilation should that also be provided, with sexual abuse she suffered as a child. Moreover, the order for active treatment has been made at a time when E has already been admitted for palliative care, and started on the Liverpool Care Pathway, in the expectation she will die, and so represents an epic, even gruesome, volte-face, at a time when the patient was already settled on the glide plane to death. Can, we must ask, such a rude, and very likely futile, reversal ever be justified? Is it not, to use the old phrase, a clear case of striving officiously to keep alive, when common humanity calls for care and compassion in the face of the inevitable?

The judgement can be read here, and at its core lies the question of capacity – that is, the ability, or otherwise, of an individual to make autonomous decisions about their own fate, even when those decisions may, even will, lead to harm or death. In a nutshell, the judge decided E lacked capacity, and in so doing placed a duty on the court to make a decision on treatment based on E’s best interests; and the decision it reached was that E should be removed from palliative care, and returned to active, potentially curative, treatment, even if that treatment was bound to be foul, burdensome and extended.

Questions of capacity are now bound to statute, chiefly the Mental Capacity Act 2005, and despite the measureless reams of fathomless waffle that have grown around it, its principles are clear enough. Firstly, there is a presumption of capacity; that is, a person has capacity unless and until he or she is shown to lack capacity. To demonstrate a lack of capacity, two conditions must be met. The person must both have a disorder capable of interfering with capacity – the actual wording is an “impairment of, or a disturbance in the functioning of, the mind or brain”, an intentionally broad definition, but a crucial one because, in the absence of such a disorder, a person cannot under the Act lack capacity – and be shown to be unable (a deficit at any one of the four steps is sufficient) to understand, retain, weigh key information, and then communicate the decision reached.

Clearly E had a relevant disorder (anorexia nervosa) throughout, and few would deny she lacked capacity at the time of the hearing, for she was by then on stiff opiates (and so in a ‘drug haze’) and so the question turned instead on whether she had or lacked capacity at the time she completed an earlier advance decision in which she made it clear that, while she would accept palliative care, she did not want life saving or sustaining treatment. The judge, after noting the unfortunate lack of contemporary formal documentation of capacity (which would have settled the matter), decided that, on the balance of probabilities, E did not have capacity to make the advance decision. The reasons, which seems a little woolly to Dr No’s legally untrained eye, appear to be the combined weight of E’s detention under Section 3 of the Mental Health Act (and so the implied presence of significant mental illness) on the day she signed the advance decision, and the – fully acknowledged – Catch-22 reasoning that an individual suffering from a disease which has at its core a disturbance of relationship with food cannot be expected to weigh reasonably in the mind decisions about food.

This reasoning, which is more reverse Catch-22 than real Catch-22 (Heller’s original was that asking for a psychiatric assessment hoping to escape combat by reason of insanity proved you were sane, while E’s predicament is that a (presumed) capacitous decision to refuse food proved she in fact lacked capacity), and despite the apparent impeccability of its logic, troubles Dr No, because it appears to preclude the seriously ill anorexic from ever making a capacitous decision to refuse food. Yet, he can conceive a position where an intelligent articulate and by rights autonomous patient has suffered so long – in E’s case for decades - and hard – she has been force fed several times before - at the hands not only of a cruel illness, but equally at the hands of those who would treat that illness come what may, that he or she wishes, in good faith and in good reason, to say, like the cancer patient who says ‘enough is enough, no more chemo’, to say ‘enough is enough, no more food’. But they can’t, because they are forever caught in anorexia’s Catch-22.

That, at any rate, appears to be the catch in which E has been caught. All that remains to add is that the doctors – almost inevitably, because in Dr No’s experience, of all doctors, psychiatrists find it hardest to let patients go - then argued that despite years of treatment, E had not in fact recently successfully completed a course of treatment, and regained an adequate weight; and so her best interests require one last go. The judge conceded, and E now faces a year or more of foul and burdensome treatment. And, yes, of course a case can always be made that everything that can be tried must be tried, but to Dr No such conduct can sometimes be more about treating the doctors’ anxieties than the patient’s illness, and furthermore risks sailing precious close to the wind of striving officiously. Sometimes it is better to bear away under easy sail into kinder winds, guided not so much by the rigid compass of law, but the gentler direction of clinical compassion.

20 comments:

It seems that slowly but surely, society no longer wants the medical practitioner to be the one who does, or does not, strive officiously to keep the patient alive, but would prefer someone else (the patient, or court) to make the decision. The doctor should then do what he/she is told. Even this week’s BMJ is re-entering the arena with a picture of a candle on its cover and screams at us: “why medical bodies should be neutral on assisted dying.” All this, taken to its conclusion, will make death very cumbersome for many, and lawyers very rich (unless everyone is cajoled into signing an AD when they are well)

Although away off the mark from the patient you are discussing there have been another two situations involving Jehovah’s witnesses reported this month. In the UK, a twenty-two year with sickle cell anaemia was allowed to die. However, in Australia, a four year old with leukaemia had her life saved by a court ruling.

http://www.bioedge.org/index.php/bioethics/bioethics_article/10117#idc-c...

In the second case, the child was too young to be autonomous and so it seems appropriate that the court made the decision on the child’s behalf. However, what about the 22 year old with his life before him? What should be allowed legally in the name of religion, cult or belief where minds have been altered to the extent there might be a degree of circumscribed madness coexisting with sanity? Even though, tongue-in-cheek I call myself a witch, I have a great problem with cults and when and how religion drifts into what is essentially a cult.

A commenter in the bioethics link above made the comment:

"Cults do get people killed!
50 times as many men, women, children have been killed by the Watchtower society ban on *whole* blood transfusions than at Jonestown kool-aid mass murders.

If this is true, there is a problem.

Indeed there are many problems brewing if doctors become the obedient servants of the state and no longer are trusted “not to strive officiously to keep alive” or to save lives when appropriate.

'It seems that slowly but surely, society no longer wants the medical practitioner to be the one who does, or does not, strive officiously to keep the patient alive' - the decision to impose treatment, is surely a medical one, WD?

The court's primary role was to determine the presence or absence of capacity - on the weight of evidence the judge decided the patient lacked capacity (when the advance directive was formulated) so the 'best interest' argument prevailed, and best interest is usually a matter for doctors?
I wonder if any of the nurses objected to the course of action being proposed (force feeding)?

As far as I know doctors who advocate extreme forms of treatment are not themselves subject to quite the same level of scrutiny as patients in order to justify treatment decisions they arrive at? Maybe it's time to revisit this question?

Dare I say that I hope she gets well enough to make a clean job of killing herself in some other way. I value life but I also value quality of life.

I do not say this lightly. I have a severe and enduring mental illness and have attempted suicide several times. Others have rescued me and I have rescued others. For now, I am reasonably content to live - there is some pleasure in my life, I have friends and I am also a carer - but after the person I care for is dead? Who knows? But I want the choice.

Can't think of a name - Dr No is sure you did not make your comment lightly, and he takes your first sentence - worded as it is as a (rhetorical) question ('Dare I...?') - as primarily a question rather than a statement, and the question on its broader meaning: that she gets well enough to escape her suffering, however that may come about. Dr No, for his part, doesn't 'do' hoping patients will get well enough to kill themselves, cleanly or otherwise, as he is sure you will appreciate. But he does respect your right to ask whether you dare ask the question.

One of the key points in E's case, it seems to Dr No, is that she is not, so far as we know, persistently or actively suicidal; it is instead that she has had enough, and wants her doctors to allow nature to take its course. In this, she is more like a patient with cancer who has had enough and says 'no more chemo'. Few if any would suggest that such a refusal of treatment amounted to suicide, passive or otherwise. The important point is that it is the illness (anorexia/cancer) that kills the patient, not their own will and hand. It is 'nature taking its course'. The question of when to let nature take its course is a familiar clinical one, but in E's case it became a legal one...

Dr No agrees that caring for someone - or even a pet - can give an otherwise suicidal patient a reason to live, even quality of life. He said more than once in clinical practice a one friend/relative/pet is more often than not worth more than any number of pills. And he would also respect a person's choice, with the caveat that he or she was of sound and settled mind on that choice, on suicide (but no, he wouldn't assist them if they chose suicide, even if, as noted above, he does not have a problem with letting 'nature take its course' when that is the right thing to do: the crucial thing is what actually kills the patient).

A&E CN - Dr No agrees the capacity question is core, which is why much of the post concerns capacity. He is doubtful of the judge's balance of probabilities arguments and decision that E lacked capacity for several reasons. Another reason, in addition to those mentioned in the post, is that the judge appears to have assumed a relatively global concept of capacity, when as we know it is for MCA purposes very time and situation specific. Dr No thinks it quite possible that an intelligent articulate woman might know only too well her thinking on food is bonkers, but have another bit of her sane and capacitous mind say I can't beat it, I can't stand the treatment, I want to let nature take its course - even if it kills me. In effect, Dr No is saying that if she can understand, retain and weigh the information that refusing (what is to her intolerable) treatment will kill her, and communicate that she still does not want that treatment, then it seems to Dr No she has capacity on the relevant question. Dr No might also add that in such circumstances Dr No would find it intolerable to enforce treatment on a patient - whatever a court decided. Dr No is confident he is not alone in holding such views, and for that reason is equally confident that in most non-specialist units (perhaps less so in specialist ED units - the staff have after all chosen to work there, knowing what that entails) there will be a division of opinion not just amongst nurses but doctors as well. Somehow Dr No doesn't think E's palliative care doctors and nurses will be too happy about her being yanked off their unit either.

The WD as ever gets to the heart of the matter: the erosion of individual clinical responsibility for clinical decision making. What with guidelines and protocols, not to mention courts, all telling doctors what they must do. Dr No remains terrifically old fashioned about this: he thinks it must be primarily (this caveat because there are obvious exceptions) between the doctor and the patient. The moment Social Services or the courts weigh in, all manner of mayhem can come about - as we have seen. So - to answer the A&E CN's 'who is best placed to decide best interests' question - most of the time it will be the doctors, not because they want to play God, but because they, after due consultation, are in the best possession of all the relevant facts, and, if the proper diligence is applied, will be best placed to make the best decision on best interests.

Having skimmed through the judgement and totally accepting that I don't fully understand all the legal implications, I find myself very saddened over it. E will now be subjected to forced feeding, probable mechanical ventilation, opioid withdrawal, re feeding syndrome and a very prolonged stay in hospital for a 10 to 20% chance of survival. My understanding is that this hinges on an clinical expert view that she hasn't exhausted all treatment options and that because she once managed to get her BMI over the significant figure of 17 and attended university, this may be possible again.
Having received palliative care for the past 5 weeks there appears to be some doubt over whether she will even survive the ambulance journey to the specialist hospital, never mind survive the gruelling intensive care admission that is in front of her, with resuscitation if required.
When considering such judgements I find it useful to return to ethical principles. Has E's right as an autonomous individual been respected? Does she really lack the capacity to make an informed choice? Do the benefits of treatment outweigh the harms associated with mechanical ventilation, re feeding syndrome etc? Have clinicians been truthful and discussed with her the true chance of survival from the acute episode and her chances of a "cure" for her enduring mental health problems including alcohol dependence? From a cost benefit analysis point of view is it proportionate to spend a 6 figure sum on treatment which has a very small chance of succeeding?
No one who has read E's medical history could be failed to be moved by her life story. Her parents have been put in an impossible position, having come to terms with her palliative care, they have strong doubts over the success of any treatment and face having hopes of a recovery dashed again.
As a nurse, with critical care experience, the hardest part of my job is to accept that not everyone can be cured, and that sometimes the most humane thing to do is to withdraw treatment and help patients have a dignified, comfortable, " good " death.

'who is best placed to decide best interests' question - most of the time it will be the doctors, not because they want to play God, but because they, after due consultation, are in the best possession of all the relevant facts, and, if the proper diligence is applied, will be best placed to make the best decision on best interests - yes, but which doctors, Dr No?

You suggest psychiatrists in particular may have problems letting go, perhaps because of the vulnerable nature of their patient group?

In any event, it is not the judge who is saying E should be force fed but rather that from a legal perspective the patient is not capacitated and therefore her doctors must decide what is in her best interest ?
Isn't is possible, even probable that those providing palliative care may have a different opinion, and indeed mindset compared to the psychiatrist or intensivist - so which doctor gets to make the call?

A&E CN - very good point (which doctor?). Dr No was making the general point that, of all the available people, doctors are most likely to be best placed...but he forgot how cranky weird and downright perverse some of his former colleagues can be. He has seen it all too often.

He tried to hedge his bets (spot the qualifiers in this: "most of the time it will be the doctors, not because they want to play God, but because they, after due consultation, are in the best possession of all the relevant facts, and, if the proper diligence is applied, will be best placed to make the best decision on best interests"). You are right: many doctors wont do due consultation, nor apply proper diligence; instead, their own beliefs and prejudices will rule the day.

But that doesn't mean Social Services, lawyers and the courts will necessarily do better. They might do worse. Dr No is inclined to think we should ditch all that communication crap and competency based rubbish, and get back to teaching doctors about real medicine from Day One on the Wards. To this day, Dr No remembers his first clinical firm as a stoodent: surgery, a professorial unit and a lot of breast surgery. He also remembers sitting on the side of a bed (DN is short, but he has always disliked towering over patients) of a striking and beautiful woman in her thirties with recurrent breast cancer who no one could bear to imagine dying. The SR (senior registrar) looked in and afterwards said two things: much closer, and you'll be struck off before you get struck on, and we must never kill, but neither must we strive officiously to keep alive. Dr No learnt a lot that day. He is not sure today's 'educationalists' do as well as that SR did.

A and E Charge Nurse: Where the clock is not ticking fast as it was some time ago in the Kerry Woolterton situation, I don’t think it is easy, possible or advisable for a doctor in most circumstances to “impose” treatment nowadays without the agreement of the patient, relatives or a court directive. In this case the relatives seemed to agree with the decision to make E comfortable as she awaited death.

I assume, perhaps wrongly, that in E’s case the doctors concerned initially made their decision for palliative care because they thought the patient was terminally ill with multiple pathologies driven initially by anorexia nervosa rather than taking her AD into account i.e they were not striving officiously to keep alive but it was only because of perceived irreversible physical problems. After all there was an ambiguity in the AD that would tax any lawyer in the land far less a doctor untrained in legal complexities. It was not only the problem that an anorexic may lack competence but it seems she did not want to die - she just didn’t want to eat or be fed. The doctor responsible would have known the validity of the AD was debatable and hence the decision not to treat was surely based on prognosis? (Given the court's decision, time will tell whether the initial prognosis was correct.)

Like you I wonder who initially decided to challenge the medical decision. I suspect it is not common for nursing, junior medical or other staff involved in palliative care to “allow” an anorexic patient to die and they may have been unaware of other complicating physical factors in late stage anorexia and hence been very uncomfortable about the decision to embark on a deep sedation "pathway."

Should doctors have the same level of scrutiny as patients? In what way? Should doctors’ sanity be under frequent assessment in order they are considered competent to make a decision? No doubt revalidation will come to the rescue and consequently we will be able to trust all doctors all of the time!!!

While the responsibility resting on one or two senior members of the medical profession looking after such a patient is not perfect, it is probably the best you are going to get in most circumstances.

'Should doctors have the same level of scrutiny as patients?' - in this case, yes, not least because nobody here is defending the actual decision to impose treatment.

Whichever way you dress it up doctors are overriding the patient's express wishes (on the basis that she is incapacitated), and the incapacity argument has ultimately given rise to a form of treatment that, in Dr No's words, 'will be not only foul and burdensome, but intensive and extended too, perhaps for a year or more' - I agree strongly with this assessment.

Now I am not saying there may not be some justification for such an extreme position (in certain circumstances) all I'm suggesting is that when extreme forms of treatment are being forced on a patient doesn't it make sense to have some kind of independent medical forum (if circumstances permit) were experts from the relevant disciplines could offer a view as to whether or not such a course of action really IS in the patient's best interest?

Put simply, would E's doctors be able to persuade an independent panel that they themselves had not lost all sense of proportion when it comes to putting patients at the centre of medical ethics - I suspect that if either you, or Dr No was on the panel they would fail to convince you that force feeding was the right thing to do?

WD - we know the local authority brought the case to court (page one: Applicant: A Local Authority, and also at Introduction: Paragraph 1: "On 18 May 2012, an urgent application was made to the Court of Protection by her local authority, which was concerned that her position should be investigated and protected.") (we also know it was late in the day) but Dr No has no doubt the doctors and nurses were heavily involved behind the scenes, and furthermore that opinion was divided, certainly on whether to enforce treatment or allow 'nature to take its course', and very possibly on the question of capacity at the time of the earlier formal advance decision (and so its validity). This division of opinion is clear from the fact that E had been transferred to a palliative care unit (by the 'let nature take its course' camp, including presumably Drs C and D, E's consultant physician and psychiatrist: para 37: "Dr C and Dr D were highly doubtful about further coercive treatment"; also in this camp was a Dr V, a consultant psychiatrist who had had E in her care in the past, and who in March 2012 wrote "It does not feel appropriate to fight with her at this point; the fight itself (e.g. physically preventing access to the NG or PEG tube, vomiting, laxatives, trying to keep awake all the time) or the intervention (restraint, sedation) could hasten her death, as well as denying that the dignity that is so important (sic). Our approach would be to provide all care and support short of force-feeding."). The other camp is represented, at least in part, by Dr Tyrone Glover, an outside expert in eating disorders consultant called in by the Official Solicitor (para 23) and whose view, after full reflection on the case, was "that treatment which might return E to relatively normal life is available but has not so far been tried, and that she should receive it." (para 38). Also in this camp appear to be Dr M (a consultant from 'the specialist hospital'), who would be responsible for E's active treatment if she were transferred to that hospital, and Professor L, who in October 2011, when E was under his care, "recommended treatment, despite recording E's opposition very fully" (para 64). Elsewhere, Prof L is reported to have described E's illness as "severe and enduring, though highly manageable and probably treatable" (para 85). It seems pretty clear to Dr No that there was, and no doubt still is, a clear divergence of medical opinion between those who would enforce treatment, and those who would let nature takes its course.

In passing, it is worth noting here, as the judge does, that there appears to be a less than perfect documentation of capacity (or lack of it) at the time of the completion of the advance decsion ("Against such an alerting background, a full, reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision would in my view be necessary. No such assessment occurred..." - para 65), in that the notes presumably say words to the effect that 'the patient has capacity', but fail to document how that conclusion was reached. Dr No wonders if the attending clinician(s) at the time were 'somewhat conflicted' in their views, and this is reflected in a less than perfect account in the notes on capacity (because - perhaps - E was going to get treated anyway, come what may, whether she agreed or not, liked it or not, and whether she had capacity or not).

A&E CN - the Court of Protection was/in in effect an 'independent forum' where expert doctors of differing opinion aired their views (see above, and of course the judgement itself). The problem it seems to Dr No, is that while it was an 'independent forum', it wasn't the independent medical forum that you propose: it was instead an independent legal forum. The question we might ask is: notwithstanding their undoubted expertise in the law, are judges the best people to make medical decisions? Might the mighty drum roll of the law perhaps drown out the subtler music of clinical medicine?

Certainly there is a need for an independent forum: doctors and other clinicians close to the patient can, in such taxing and demanding circumstances, all too easily lose all sense of proportion (Dr No has seen it happen). Whether such developments amount to a clinically meaningful folie or delusion, or are instead simply the collapse of reason under unbearable weight, is a moot point, but whatever it is, it happens. Perhaps these cases should be considered in future not by the court of protection, but by tribunals, modelled perhaps along the lines of Mental Health Tribunals, and composed of a doctor, a lawyer and a lay person?

Were Dr No on such a panel, his decision, on the facts as we know them, would be to provide palliative care, but withold active treatment. His chief reason would be that, after consideration of all the relevant facts, possibilities and probabilities, on balance (we cannot know for certain because of the lack of sufficient contemporary documentation) E, while quite possibly lacking capacity to decide whether to have an iced bun for tea, did on the other hand have capacity to decide, at the time of her advance decision, on the far bigger question: that is, whether she wished to endure the burden of enforced treatment that she finds intolerable. As she had capacity to refuse such treatment, and did refuse it, it cannot now be enforced. The finding of E's capacity at the relevant time would be paramount, but in passing Dr No would note that his conclusion, and its implications, is and are consistent with the considered views both of the attending doctors and E's devoted parents.

I may or may not be convinced that forced feeding was the best thing to do for a patient with anorexia. In this case I just don’t know enough about the situation. It seems to me the problem here is there are two separate issues -(1) the physical state of the patient when a decision was made to embark on palliative care, and (2) the AD.

What interests me as a doctor is the reference to her “chronic other health conditions.” These may well be the result of end-stage anorexia , alcohol and opiates and be irreversible.

If I was a psychiatrist looking after an anorexic patient who was deteriorating physically, then I would have her transferred to a medical ward for immediate assessment and care. If I was then the physician responsible for her care, I would first and foremost take her physical condition into account. The AD would be put on the back burner for legally it is very complicated. Did she, for example have recurrent pneumonia, septicaemia, penetrating bedsores, cirrhosis, bleeding from oesophageal varices? Did she have spinal fractures pressing on nerves giving her severe, relentless neurological and bone pain? The possible multiple pathologies secondary to her anorexia and alcohol consumption may be serious, painful and indeed terminal. The decision I might therefore make may be that the patient required palliation rather than a bed in ITU. My prognosis may be correct or wrong. I would almost certainly have discussed it with colleagues, relatives, and the patient if she was able to communicate. I wonder whether the diagnosis (right or wrong) of irreversible physical damage is what really drove the decision in the direction of palliation initially.)

The legal judgement on the matter, although mainly to determine capacity may have unearthed other factors suggesting that with proper care the patient may make a reasonable or full recovery. That challenges the decision of those who decided that the prognosis was so bleak that palliative care was the only option. So the problem with that situation is whether the court decision is wholly about capacity, or whether it is challenging the prognosis given by the consultant(s) directly in charge of the patient. If the consultants who know the patient best cannot defend their decision then it is proper that they acknowledge that experts with more experience than they can over-ride their decision. However it may be about a third matter i.e. challenging the right of any doctor or team of doctors who have spoken to, examined and managed any patient to make a decision to practice the doctrine of “not striving officiously to keep alive.”

A committee of independent experts may be the alternative. Is that what society wants? If so, where will these experts come from? Under what criteria will they be assembled? How long will it take? What will it cost? Will they be “committee people” with vested interests? Will they have pro-life or pro-euthanasia beliefs? Will people after a certain age or with certain conditions be allowed to drift away? Will others be saved? It sounds to me as if yet another encyclopaedia of protocols might emerge from such committees of experts on these matters of life and death, and woe betide the patient who is an outlier.

The AD, though, is another matter.

We have been synchronising simultaneously, Dr No. Now I'll read what you have to say. I hope it is wiser than what I have said!

WD - DN decided to stick his neck out, generally not a wise thing to do! He has also agreed with the A&E CN that, in complex cases where the clinicians cannot/will not agree, then some form of independent forum/tribunal makes sense. But it should only be resorted to in extreme cases; normally, the bedside clinicians are, as a rule, after proper consultation, consideration, and most importantly of all, discussion with the patient, best placed to make the best decisions.

It is perhaps The Cockroach Catcher's own experience with young Anorexia Nervosa Patients that has coloured his views. There is in him a genuine feeling that doctors should be allowed to doctor pure and simple and in that sense he feels that psychiatrists should be doctors too, real doctors.

Remember the early days of treating phobia when bus loads of phobic patient from none other than the Maudsley were taken to Piccadilly Circus and dumped there. It was known as implosion therapy. then later suicidal patients were given the sharpest razor blades so that they can get on with it.

In Psychiatry, the best treatment is without doubt Placebos. But placebos only works if neither the patient nor the parents knew.

In reading DN's blog I reposted my patient where I let her die.

Well, did I or was that part of Haley/Minuchin treatment? You can decide.

No the early day psychiatrists did not mean harm to come to the Picadilly or Razor patients, but when non-doctors are involved, good luck to the said patients.

Perhaps DN;s patients was of Millennium Trilogy quality and ooops, what was the state doing?

Please let the real doctors or better still the real psychiatrist get on with their real work, if only they are allowed to remember how to give all the guidelines floating around.

The Cockroach Catcher retired partly because he sensed he would not be allowed to carry on his own doctoring ways.

Dr No has become aware of an interesting article, written by that contradiction in terms, a sensible lawyer, about E's case. Barbara Hewson raises many interesting points, but the one that struck Dr No was that E had the fortune, or rather misfortune, to have her case heard by the Court of Protection. Hewson's point is that these courts normally deal with children, and so are by nature and practice paternalistic: 'the child's interests must always come first', with a heavy emphasis on protection. Such courts, she suggests, are not necessarily best placed to consider the interests of desperate adults - a point Dr No agrees with, and attempted to answer by suggesting the setting up of special tribunals, along Mental Health Tribunal lines.

Meanwhile, Dr No was keen to comment on another blog about E's case the other day, but was blocked by the limited number of commenting profiles (specifically, name/url is not available) - and one thing Dr No doesn't do is blogger, or anything associated with its google infested waters. So he didn't comment there but...

...he can here. The post in question is one by Dr Peter Saunders, chief pongo at the Christian Medical Fellowship. In the original post he praises the court's decision by headlining the post "Judge makes wise and courageous call in deciding to continue treatment of anorexia patient", but goes on to deny that he is "pushing a 'vitalist' position, that all treatments that might be given must be given to every patient".

Saunders also said (and this was Dr No's primary reason for wishing to comment) "Dr No's description of forced feeding is I think emotive and melodramatic." Dr No appreciates the gracious way in which this remark is made, but his far less gracious reply is that, while not exactly beating about the bush, Dr No does feel he spared readers the true horrors of prolonged force feeding. But some notion of its horror must be brought into the discussion, lest we forget the reality that happens behind closed doors, and bears so much on E's case. He might also add, distinctly ungraciously, that a photo of a willowy lass with soulful eyes might just seem to some a trifle more emotive than a Catch 22 graphic.

Dr No also made one or two other remarks in the comment that never was, including this one, which does intrigue him, and he mentions it here because it bears on Hewson's observation, that the court may have been predisposed, perhaps in ways it did not fully appreciate, to find in favour of active treatment. Here, with minor changes and a couple of links, is what he wrote in the unpublished comment to Saunder's post. Dr No appreciates it is highly speculative, but he did think it nonetheless a question worth asking a doctor heavily involved in the Christian Fellowship:

"Interestingly, although he didn't mention it in his post, and indeed here is perhaps a better place to mention it, Dr No heard a certain echo in the judgement (it's in the passage quoted above) that sounded uncommonly like something from the Book of Common Prayer - perhaps from The Ordre for the Buriall of the Dead. He couldn't help but wonder whether, at a subconscious level, the judge also heard that curious echo; and in so doing subconsciously attached an uncommon weight to the sanctity of life side of the scales he used to weigh the decision."

Ah, Hewson?
Off topic I know, but I first came across her some 10 years ago when preparing on assignment on patients who self harm then refuse treatment in A&E (on the back of a paper by Hassan, et al) - those articles have always stuck with me.

Hassan paper here http://ukpmc.ac.uk/articles/PMC1116195//reload=0;jsessionid=xGru3uVGCc8c...

Hewson response here
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1116728/

She concludes "The law in this area is complex. Adults are presumed competent to refuse treatment, even in an emergency; but it is not easy to judge in practice what factors are capable of rebutting the presumption. Every case turns on its own facts. The detention of incompetent patients for treatment under a common law power of necessity is controversial, and likely to generate litigation under the Human Rights Act 1998".

Thanks for the new link, Dr No - I shall read it this afternoon.

Thanks to both Dr No and a&e charge nurse for being kind enough to mention my articles. I like to think they stand the test of time. What has struck me forcibly recently is the shift in the legal culture in which we now operate. When I was called to the Bar, lawyers concerned with civil liberties wanted to right miscarriages of justice, and free people who had been wrongly imprisoned. Now I see younger lawyers arguing enthusiastically in favour of the notion that all manner of people should be regarded in law as "detained" (with all the consequences that flow from that), and that the state should interfere in people's lives to protect them from themselves and their intimate others.

Another problem is the Human Rights Act. This is now being used as a tool of social control. Rights which can be taken away from you after some argument before a judge sitting in private are not (as Oscar Wilde astutely observed) rights at all: they are "a mere matter of form." Whereas, as he said, "A [true] right is articulated might."

I could go on, but it is getting late.

Ms Hewson - it is refreshing to hear a legal opinion, and a relief to hear that not all lawyers are confident that the Court of Protection got it right. Of the myriad of questions E's cases raises, yet another one that occurs to Dr No is, given the applicant was the (supposedly impartial) Local Authority (but in practice they were acting to challenge E's decision), who really argued E's case (for continuation on the path she had decided for herself)? On paper, the Official Solicitor was her 'litigation friend', but the judgement suggests the OS was anything but her 'litigation friend', in that the OS argued against E being allowed to continue on the path she had decided for herself ("The Official Solicitor accordingly sought a declaration that forcible feeding is in E's best interests" - para 38). To that extent, it seems E (and her wishes, so far as we know them) were effectively not represented at all. This seems quite remarkable, and an obvious recipe for a miscarriage of justice.

In contrast, in a Mental Health Tribunal, the patient's views (however crazy or not, as the case may be), are represented - hence Dr No's suggestion that E's and similar cases should be heard under a similar system, where there is a clear advocate for the patient's declared position.

I agree that hapless patients in the Court of Protection (CoP) being dealt with under the Mental Capacity Act 2005 do not always have their position supported: whoever is appointed as litigation friend (unless it is a family member) tends to defer to the views of whichever expert is appointed to opine/ grind an axe. One of my instructing solicitors with experience of MHRT work is dismayed at the paternalism endemic in CoP proceedings, which is at odds with the MHRT culture. And certainly in E's case, there was no one speaking up for E's stated position, apart from her parents who had no lawyer to represent them, and so were inevitably disadvantaged. It is also striking how paternalist the experts in CoP proceedings tend to be. They seem preoccupied with risk, and with the idea that professional care is best. Only recently, I was challenging a psych for "shroud-waving." I said the case seemed more about the anxieties of professionals than about P (she agreed). When I suggested that the proposed approach suggested a lack of trust, on the part of certain professionals, in the views of other professionals as well as in family carers, she claimed that was an "emotive" way of putting it!

For some reason (and it may also be that it also influences their choice of career), shrinks are, as a rule, scared stiff, as the phrase has it, of stiffs. Nothing alarms them more than the prospect of a patient leaving their ward feet first. Maybe it is because many deaths in psychiatry (old age shrinking perhaps excepted) are suicides. Whatever the reason, the prospect of a death usually sends shrinks into some very weird tail-spins, and, as you rightly observe (as did Dr No in the last paragraph of the OP), much of their activity seems directed at dealing with their own anxieties, rather than considering what is best for the patient.

BH - "One of my instructing solicitors with experience of MHRT work is dismayed at the paternalism endemic in CoP proceedings, which is at odds with the MHRT culture." This too is very much Dr No's point. Patients like E would be very much better served by a Mental Health Tribunal type system than they are by the CoP.


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