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Tag Archives: surgery against a person’s will

An unmusical Mozart – a patient’s right to say no to surgery

Posted on October 1, 2015 by suesspiciousminds

 

The Court of Protection dealt with a challenging case in Wye Valley NHS Trust v B 2015. The case was decided by Mr Justice Peter Jackson, and as ever he brings analysis, kindness and humanity to bear on a very difficult issue in the Court of Protection.

http://www.bailii.org/ew/cases/EWCOP/2015/60.html

 

Here a man who clearly lacked capacity to make a fully informed decision, had expressed extreme hostility towards having an operation to amputate his foot. The medical professionals were clear that if he did not have his foot amputated, that the infection in it would spread and eventually kill him.

 

The Court had to decide whether it was in the man’s best interests to have the operation against his will or whether it was in his interests to respect his autonomy and wishes even though it would have adverse consequences.

A person who has capacity to understand the medical advice and risks and consequences would be able to say no to surgery in any event. What the Judge had to do here was consider what weight to give to the man’s wishes and the context of those wishes being expressed by a person who did not have the capacity to fully weigh up the pros and cons.

 

  1. Where a patient lacks capacity it is accordingly of great importance to give proper weight to his wishes and feelings and to his beliefs and values. On behalf of the Trust in this case, Mr Sachdeva QC submitted that the views expressed by a person lacking capacity were in principle entitled to less weight than those of a person with capacity. This is in my view true only to the limited extent that the views of a capacitous person are by definition decisive in relation to any treatment that is being offered to him so that the question of best interests does not arise. However, once incapacity is established so that a best interests decision must be made, there is no theoretical limit to the weight or lack of weight that should be given to the person’s wishes and feelings, beliefs and values. In some cases, the conclusion will be that little weight or no weight can be given; in others, very significant weight will be due.
  2. This is not an academic issue, but a necessary protection for the rights of people with disabilities. As the Act and the European Convention make clear, a conclusion that a person lacks decision-making capacity is not an “off-switch” for his rights and freedoms. To state the obvious, the wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else, and may even be more important. It would therefore be wrong in principle to apply any automatic discount to their point of view.
  3. In this case, the Trust and the Official Solicitor consider that a person with full capacity could quite reasonably decide not to undergo the amputation that is being recommended to Mr B, having understood and given full thought to the risks and benefits involved. However, the effect of their submissions is that because Mr B himself cannot balance up these matters in a rational way, his wishes and feelings are outweighed by the presumption in favour of life. It is, I think, important to ensure that people with a disability are not – by the very fact of their disability – deprived of the range of reasonable outcomes that are available to others. For people with disabilities, the removal of such freedom of action as they have to control their own lives may be experienced as an even greater affront that it would be to others who are more fortunate.
  4. In some cases, of which this is an example, the wishes and feelings, beliefs and values of a person with a mental illness can be of such long standing that they are an inextricable part of the person that he is. In this situation, I do not find it helpful to see the person as if he were a person in good health who has been afflicted by illness. It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values. It is no more meaningful to think of Mr B without his illnesses and idiosyncratic beliefs than it is to speak of an unmusical Mozart.
  5. Further, people with Mr B’s mental illness not uncommonly have what are described by others as “religious delusions”. As appears below, he describes hearing angelic voices that tell him whether or not to take his medication. Delusions arising from mental illness may rightly lead to a person’s wishes and feelings being given less weight where that is appropriate. However, this cannot be the automatic consequence of the wishes and feelings having a religious component. Mr B’s religious sentiments are extremely important to him, even though he does not follow an established religion. Although the point does not arise for determination in this case, I approach matters on the basis that his Article 9 right to freedom of thought and religion is no less engaged than it would be for any other devout person.
  6. This is another manifestation of the principle that the beliefs and values of a person lacking capacity should not be routinely undervalued. Religious belief has been described as a belief that there is more to be understood about mankind’s nature and relationship to the universe than can be gained from the senses or from science: R (Hodkin and another) v Registrar General of Births, Deaths and Marriages [2014] AC 610 at [57]. Religious beliefs are based on faith, not reason, and some can strongly influence the believer’s attitude to health and medical treatment without in any way suggesting a lack of mental capacity. Examples include belief in miraculous healing or objections to blood transfusions. There may be a clear conceptual difference between a capable 20-year-old who refuses a blood transfusion and an incapable elderly man with schizophrenia who opposes an amputation, but while the religiously-based wishes and feelings of the former must always prevail, it cannot be right that the religiously-based wishes and feelings of the latter must always be overruled. That would not be a proper application of the best interests principle.
  7. Having commented on the process of evaluating wishes and feelings, I refer to the Law Commission’s current consultation paper No. 222: Mental Capacity and Deprivation of Liberty. It proposes [Proposal 12.2] that s.4 of the Act might be amended so that an incapacitated person’s wishes and feelings should be assumed to be determinative of his best interests unless there is good reason do depart from the assumption. It is said [12.42] that there is insufficient certainty about the weight to be given to a person’s wishes and feelings and that prioritising them would reflect to some degree the approach of the United Nations Convention on the Rights of Persons with Disabilities.
  8. In the above discussion, I have identified some of the circumstances in which the wishes and feelings of incapacitated individuals might be unjustifiably undervalued. However, my respectful view is that the Law Commission proposal would not lead to greater certainty, but to a debate about whether there was or was not “good reason” for a departure from the assumption. To elevate one important factor at the expense of others would certainly not have helped the parties, nor the court, in the present case. All that is needed to protect the rights of the individual is to properly apply the Act as it stands.

 

For my part, I think that the proposal by the Law Commission would be a beneficial addition for dealing with these cases, putting a rebuttable presumption that a person’s expressed wishes should be followed unless there are strong reasons for the contrary. Whilst many Court of Protection Judges (including this one) have a very healthy respect for autonomy and the wishes of the patient, some still tend to veer towards the wrapping P in cotton wool and the patrician approach.

 

Lastly, I refer to the principle at s. 4(4) that so far as is reasonably practicable, the person must be permitted and encouraged to participate as fully as possible in any decision affecting him. In this case, given the momentous consequences of the decision either way, I did not feel able to reach a conclusion without meeting Mr B myself. There were two excellent recent reports of discussions with him, but there is no substitute for a face-to-face meeting where the patient would like it to happen. The advantages can be considerable, and proved so in this case. In the first place, I obtained a deeper understanding of Mr B’s personality and view of the world, supplementing and illuminating the earlier reports. Secondly, Mr B seemed glad to have the opportunity to get his point of view across. To whatever small degree, the meeting may have helped him to understand something of the process and to make sense of whatever decision was then made. Thirdly, the nurses were pleased that Mr B was going to have the fullest opportunity to get his point across. A case like this is difficult for the nursing staff in particular and I hope that the fact that Mr B has been as fully involved as possible will make it easier for them to care for him at what will undoubtedly be a difficult time.

 

[that noise you can hear is me applauding]

 

The Judge sets out the pros and cons of the best interests decision very well – the judgment is short, and well worth a read for those sections.

  1. Conclusion
  3. Having considered all of the evidence and the parties’ submissions, I have reached the clear conclusion that an enforced amputation would not be in Mr B’s best interests.
  4. Mr B has had a hard life. Through no fault of his own, he has suffered in his mental health for half a century. He is a sociable man who has experienced repeated losses so that he has become isolated. He has no next of kin. No one has ever visited him in hospital and no one ever will. Yet he is a proud man who sees no reason to prefer the views of others to his own. His religious beliefs are deeply meaningful to him and do not deserve to be described as delusions: they are his faith and they are an intrinsic part of who he is. I would not define Mr B by reference to his mental illness or his religious beliefs. Rather, his core quality is his “fierce independence”, and it is this that is now, as he sees it, under attack.
  5. Mr B is on any view in the later stages of his life. His fortitude in the face of death, however he has come by it, would be the envy of many people in better mental health. He has gained the respect of those who are currently nursing him.
  6. I am quite sure that it would not be in Mr B’s best interests to take away his little remaining independence and dignity in order to replace it with a future for which he understandably has no appetite and which could only be achieved after a traumatic and uncertain struggle that he and no one else would have to endure. There is a difference between fighting on someone’s behalf and just fighting them. Enforcing treatment in this case would surely be the latter.
  7. The application, which was rightly brought, is accordingly dismissed.
  8. I conclude by thanking the parties and witnesses for the quality of their contributions and by paying tribute to the high standard of care and treatment that Mr B is now receiving.

 

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Barbecue tongs and police being given power to force entry to a home

Posted on July 8, 2014 by suesspiciousminds

 

Another C-section Court of Protection case. You may have seen the Daily Telegraph piece already

http://www.telegraph.co.uk/news/uknews/law-and-order/10952683/Judge-allows-police-to-break-down-womans-door-for-enforced-caesarean.html

 

The Telegraph’s reporting is very faithful to the judgment here, and it is more of a factual report than a comment piece.  The judgment itself is the Mental Health Trust and DD 2014

 

http://www.bailii.org/ew/cases/EWCOP/2014/11.html

 

This is the sixth pregnancy that DD has had. She has mild to borderline learning disability (Full scale IQ of between 67 and 75 – if you read cognitive assessments often, that’s in the bottom 1% of the general population, but in the area where USUALLY , and I stress USUALLY the person has the capacity to make decisions for themselves and conduct litigation), but this was compounded by her autistic spectrum disorder, and it was the combination of the two difficulties that led the Court to conclude that she lacked capacity for the purposes of the Mental Health Act.

 

None of the previous five children live with DD or her partner, BC  – her partner is said to have significant learning difficulties and a lower IQ than DD. The obvious compelling fact from the five previous children is this, in relation to child 3

 

In June 2010, on a home visit, DD was found cradling a baby born in her home; the baby was believed to be 5-10 days old. Child 3 (male) was at that point seriously dehydrated and undernourished (it appears that the parents had sought to feed him with cup-a-soup), with lesions on his head believed to be caused by Bar-B-Q tongs which (from information provided by DD and BC at the time) BC had used to assist in the delivery (DD denies this)

 

Added to that is that during the pregnancy of the fourth child, mother suffered an embolism, leading to increased health risks in pregnancy and labour for future children

 

  • On a routine visit to DD’s and BC’s home in July 2011, DD was observed to be very unwell; she was fitting, and unconscious. It later transpired that she had suffered an intracerebral embolism causing fitting (status epilepticus), probably brought about by the pregnancy. BC was unable to say for how long DD had been in this dire state. DD was admitted to hospital as an emergency; her fitting could not be controlled, and she was therefore given general anaesthetic and ventilated on the intensive care unit. Monitoring of the unborn baby revealed evidence of foetal bradycardia (slowing of the heart and consequent distress). In order to treat the patient (DD) and relieve the foetal distress, an emergency caesarean section was therefore performed. DD suffered significant post-partum haemorrhage, and required a 2 unit blood transfusion. Child 4 (female) was born very prematurely at 29 weeks.

 

 

 

  • Following the birth, neither parent sought to see Child 4, nor did they engage with child care proceedings. Child 4 was made the subject of a care and placement order and placed for adoption.

 

 

 

  • Significantly, DD resisted prophylactic injections to prevent further blood clots. The occurrence of the embolism means that any future pregnancy carries an increased risk of stroke and of haemorrhaging

 

 

And then child 5

 

 

  • Child 5: Later in 2012, DD became pregnant again. The pregnancy was once again concealed from the professional agencies (including social workers from the adult and child services) which were endeavouring to work with the parents. The parents withdrew from engagement with professionals, and on occasions refused entry to their home. In mid-July, an unannounced visit by child care social workers was made to the home; BC declined their request to enter. Following protracted negotiations (involving discussion of police attendance to obtain access to DD), BC relented. On entering the property, DD was seen attempting to breast feed a baby (Child 5: female), swaddled in a dirty pillow case soiled with blood. The home was dirty; there was no sign of baby clothes, blankets, bottles, nappies or anything suggesting preparation for a child. DD was evasive when asked where the afterbirth was; there was concern that it may not have been delivered. DD looked unwell. BC handed Child 5 to the social workers, and gave permission to have her examined in hospital.

 

One can understand why any professional involved with DD would be concerned about her pregnancy and anxious to ensure that the baby is not born at home without medical supervision. It appears that DD and BC withdrew from medical and other services during this pregnancy

 

 

  • Between late February and early April, twenty-five social work visits were made to DD and BC’s home. Even allowing for the fact that on occasion DD will undoubtedly have been out, the social workers were not able to obtain access on even a single occasion. Occasionally, DD and BC have been sighted at the windows within the property, but have not responded to knocking at their front door. On one occasion, BC responded to the knocking by telling the visitors (through the locked door) that DD was “not pregnant“; DD was heard shouting in the background.

 

 

 

  • Given the level of concern, and belief in the advancing pregnancy, the Adult social services sought and obtained a warrant under section 135 Mental Health Act 1983 which authorised them to enter, with police presence and if need be by force, DD’s home, and, if thought appropriate, to remove her to a place of safety with a view to making an application in respect of her under Part II of the Mental Health Act 1983. Mr. D told me that there was reasonable cause to suspect that DD (a person believed to be suffering from mental disorder) was being kept otherwise than under proper control.

 

 

 

  • On 8 April 2014, the warrant was executed. On entering the flat that evening (17:00hs), there was an overwhelming smell of cats’ urine; the home was dirty and dingy. DD and BC were initially distressed, but (according to Mr. D and Mrs. C, who were both present) the situation was soon calmed, and DD was conveyed to a mental health unit for full mental and physical assessment. DD co-operated with a physical examination, an ultrasound scan, and blood sampling.

 

 

 

  • Following this assessment, fifteen further attempts were made to see DD at home. On none of those visits did DD or BC answer the door. DD did not attend pre-booked ante-natal appointments on 23 April, or on 21 May 2014; transport had been offered and provided. The letter reminding her of the ante-natal appointment was returned with a message on the envelope ‘return to sender, moved away‘.

 

 

 

  • To add context to this level of ante-natal intervention, NICE (National Institute for Health and Care Excellence) Guidelines recommend nine appointments for a high-risk pregnancy (which this is – see §97(vii) below); by this time, DD had had one appointment, and only (as is apparent from the history above) when she had been removed from her home following court order.

 

 

 

The Trust (ie the hospital and doctors at the hospital) made an application to the Court of Protection for a number of declarations about DD

 

i) DD lacks capacity to litigate in respect of the issues below;

ii) DD lacks capacity to make decisions in respect of whether to undergo a caesarean section and to make decisions generally about her care and treatment in connection with her impending labour, including the place and mode of delivery of her unborn child;

iii) It is in DD’s best interest to undergo a planned caesarean section in hospital with all necessary ancillary treatment;

iv) DD lacks capacity to consent to be subject of an assessment of her capacity to make decisions in relation to contraception (by way of sections 48 or 15 Mental Capacity Act 2005);

v) It is in DD’s best interest to be subject of a one day assessment of her capacity to make decisions about contraception;

vi) The Applicants may take such necessary and proportionate steps to give effect to the best interests declarations above to include, forced entry, restraint and sedation.

 

The Court of Protection were not dealing with, were not asked to deal with, and have no powers to deal with, what would happen to DD’s baby once it was born. The Judge,  Cobb J, simply says this

I exhort the Council to make sure that any application for orders fully engages DD, so that she can be represented by her litigation friend, the Official Solicitor. It is plainly important, in DD’s best interests, that plans for the baby are formulated and presented to her in a way which engages her to the fullest extent.

 

 

The Court assessed DD’s capacity.  (I will set out now, because it is an issue that continues to trouble some practitioners in this field and also campaigners, that although DD was represented through the Official Solicitor, the Official Solicitor had not met with her or taken her views on the issues and did not in effect mount a challenge or defence to those declarations. The Official Solicitor’s role is to make representations to the Court about what they consider to be in DD’s best interests – in some cases that means agreeing or not opposing the declarations sought, in some cases it means a very robust opposition to the declarations sought, but there is no general principle that the Official Solicitor ought to argue against state intervention and FOR autonomy for people like DD)

 

The peculiar issue in relation to capacity was that DD in five sets of care proceedings had been adjudged to have capacity to litigate, and had NOT been represented through the Official Solicitor. That would be fairly unusual in a case where the Court was contemplating surgery against the person’s will

 

  • I am satisfied that “all practicable steps” (section 1(3) MCA 2005) have been taken to help DD to make a decision as to litigation, and mode of delivery, but that such steps have been unsuccessful – not just because of the low level of co-operation, but because she has displayed such rigid and unshakeable thinking (‘mind-blindedness’) about the information provided.

 

 

 

  • Her decision-making is undoubtedly “unwise“, but it is not, in my judgment, just “unwise“; it lacks the essential characteristic of discrimination which only comes when the relevant information is evaluated, and weighed. I am satisfied that in relation to each of the matters under consideration her impairment of mind (essentially attributable to her autistic spectrum disorder, overlaid with her learning disability) prevents her from weighing the information relevant to each decision. While anxious that in the past DD has ostensibly participated (albeit in a limited way) in public law proceedings without any finding of the court as to her capacity to do so (which causes me to reflect yet more carefully on the issue under consideration now) I must consider the issue with regard to this particular piece of litigation (Sheffield Crown Court v E & S – supra).

 

 

 

  • Moreover, on the evidence laid before me, there is reason to believe (section 48) that she lacks capacity in relation to whether to participate in an assessment of her capacity to decide on future contraception.

 

 

 

  • In these conclusions, I am fortified by the fact that the Official Solicitor, on DD’s behalf, does not seek to persuade me otherwise.

 

 

 

  • These conclusions can be drawn as declarations reached pursuant to section 15 Mental Capacity Act 2005, save for the conclusion in relation to capacity to consent to an assessment of decision-making relevant to future contraception, which will be drawn as a declaration under section 48 MCA 2005

 

 

 

The Court then went on to consider, what the best interests of DD required, given that she lacked capacity to make her own decision. The analysis that Cobb J undertakes of the various options for delivery of the child, the pros and cons of each and the balancing exercise is the best of these that I have seen, and I hope that this sort of root-and-branch analysis becomes more widely used in these cases. He reaches the conclusion that caesarean section is the best course of action, and makes the declarations that would allow the hospital to carry out that surgical procedure.

 

We then move to the headline item – in all of the other C-section Court of Protection cases the expectant mother has been in hospital, here she is at home. How is she to be conveyed to hospital?

 

Achieving the admission to hospital: Use of reasonable force & deprivation of liberty

 

  • I am conscious that steps may need to be taken to give effect to the decision which I make, if compelled attendance at hospital is required (for caesarean or induced vaginal delivery) in the face of DD’s objection. The extent of reasonable force, compulsion and/or deprivation of liberty which may become necessary can only be judged in each individual case and by the health professionals.

 

 

 

  • On two recent occasions forcible entry has had to be made to DD’s home in order to achieve some form of assessment: once with the authorisation of the lay justices (section 135 MHA 1983: 8 April 2014) and once pursuant to an order of Pauffley J (section 48 MCA 2005: 19 June 2014).

 

 

 

  • Any physical restraint or deprivation of liberty is a significant interference with DD’s rights under Articles 5 and Article 8 of the ECHR and, in my judgment, as such should only be carried out:

 

 

i) by professionals who have received training in the relevant techniques and who have reviewed the individual plan for DD;

ii) as a last resort and where less restrictive alternatives, such as verbal de-escalation and distraction techniques, have failed and only when it is necessary to do so;

iii) in the least restrictive manner, proportionate to achieving the aim, for the shortest period possible;

iv) in accordance with any agreed Care Plans, Risk Assessments and Court Orders;

 

  • On each previous occasion, after DD’s (and BC’s) understandable initial distress at the intrusion, DD has been calm and co-operative; BC less so. The presence of the police has not aggravated the situation; on the contrary, I was advised by Mr. D that DD sees the police as neutral and therefore helpful in maintaining peace. DD does not see the police as a risk; indeed, it was felt, the presence of police (in fact, uniformed police underline for the concrete thinker the visual confirmation of authority) creates a brake on her anxiety, anger, frustration and fear. The police add a ‘message’ to DD that the situation is ‘serious’ (according to Mr D) and has the effect of calming DD and BC.

 

 

 

  • In fulfilment of the plan as a whole, it is critical that the particular team of trained and briefed professionals is involved.

 

 

 

  • I recognise that sedation may be needed to ensure that DD does not cause herself harm at the time of the transfer to, and in-patient stay, in the hospital. General anaesthesia is likely to be necessary in my judgment to facilitate the caesarean section given the risks to herself if she were to interfere with the surgical procedure, or choose to be non-compliant with localised anaesthetic.

 

 

 

Finally, the Trust were proposing that DD be told of the general plan – that she would be taken to hospital and undergo a C-section, but not detail as to the date. The Judge considered the pros and cons of this here

 

 

  • The Applicants propose that neither DD nor BC should be advised of the date planned for the caesarean procedure, but should be provided with partial information: they are aware of this hearing, and it is proposed that they should be informed of the Applicants’ plan to arrange a caesarean section for her.

 

 

 

  • It should be noted that neither DD nor BC were advised in advance of the date of the localisation scan which took place two weeks ago.

 

 

 

  • There are plainly risks associated with providing DD and BC with full information (i.e. about the planned date), and, in the alternative, providing them with partial information. The professionals consider that the risks associated with providing them with full information are greater given DD’s likely raised stress and anxiety levels as the date approaches; this may have a serious impact on her mental health. This concern is underlined by the fact that she was adamant that she should not have her planned caesarean at the time of the birth of Child 2 until the exact due date.

 

 

 

  • There is a further risk that in advising DD and BC of the date of the caesarean, that they may seek to leave their home, and disappear. This in itself would create risks to DD, in that:

 

 

i) There is no guarantee that the specialist team local to her current home which has been identified to look after DD on the appointed date could be assembled on short notice, once DD and BC have been located;

ii) Health professionals in any new area would be unfamiliar with her situation, and less well equipped to deal with her, and her particular needs;

iii) Managing a safe transition from the community to hospital may be less easy or (if she is located in a public place) dignified.

iv) If she attempts a vaginal delivery at home (particularly any temporary home which is unfamiliar), she may be putting herself at additional risk.

 

  • If DD and BC are given partial information (omitting specific dates) the levels of anxiety are likely to be lessened and DD may have difficulty relating the information to herself given her autism spectrum disorder. This condition may make it difficult for DD to see how the information relates to her until concrete actions take place. Recent experience (8 April and 19 June) has demonstrated that while DD has been initially distressed, this reduces quite quickly and effectively using skilled de-escalation techniques.

 

 

 

  • I acknowledge that giving full information to DD and BC about the plans for the delivery of the baby would most fully observe their Article 8 and Article 6 ECHR rights.

 

 

 

  • However, in my judgment the provision of only partial information (i.e. that the plan is for a caesarean section, but not giving her a date) is a justified interference with her potent Article 8 rights on the facts of this case, as necessary in the interests of her health and the health of her unborn child. Moreover, I am of course satisfied that her Article 6 rights have been observed by her full and effective representation – with the fullest opportunity for her engagement – in this hearing

 

 

 

These cases, as with so much that falls to be decided by High Court judges, are extraordinarily difficult, with there being no perfect answer. Nobody can, or indeed should, feel wholly comfortable with a deeply vulnerable woman being removed from her home by police officers and taken to a hospital to have surgery performed on her against her will; not least because one can see that her prospects of remaining together with the baby are not strong given the previous history. It makes me feel squeamish and uncomfortable. But when one contemplates the alternative – that two parents of such limited abilities try to deal with a home birth unsupervised and a labour that has medical complications, given that they previously tried to use barbecue tongs as forceps and injured child 3’s head during the process, that feels terrible too.  I don’t know how we get these decisions right and do them fairly, but it would be hard for anyone who takes the time to read Cobb J’s judgment carefully to think that he didn’t try his utmost to make this difficult decision fairly.

 

My one caveat is that I think there should be someone in Court who is advocating for non-intervention, and for DD’s autonomy. If the Court don’t consider that DD’s autonomy can outweigh her wider interests and safety, then so be it, but I would feel better if someone was really arguing ‘fearlessly and without favour’ for the State to leave this woman alone. That way, all of the competing options are rigorously argued out and tested. Otherwise, that is left entirely on the shoulders of a Judge – and we may not always be as fortunate to have a Judge like Cobb J, who has the mindset, the knowledge and in this case the time, to vigorously consider the counter arguments that are not being made by the advocates.

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