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Wednesday, 24 September 2014

Electroconvulsive Therapy: Whose decision is it?

@steweatherhead & @THEAGENTAPSLEY

What does consent to treatment mean?
Lisa is a 42 year-old woman. She has had a difficult life. She has experienced multiple traumas and has at times struggled with her emotions. Lisa has a few close family members and a small social circle, though she does at times feel a bit oppressed by them. In 2010 Lisa contracted HIV. She has been treated medically and was stable for some time, however in 2013 she started to deteriorate. She was seen by a psychologist as well as by medics. After a further twelve months she had had enough of interventions and decided she wanted to live the remainder of her life in her own way. Her family and friends objected as they could see she would rapidly deteriorate. However with support from professionals, Lisa utilised the Mental Capacity Act (MCA) to set some advanced directives. She was found to be capable of making these decisions under the MCA, and was legally allowed to refuse further intervention. Lisa did indeed deteriorate, and died a few months later in her own home with her family and friends around her.


Here’s another version of that story:

Lisa is a 42 year-old woman. She has had a difficult life. She has experienced multiple traumas and has at times struggled with her emotions.  Lisa has a few close family members and a small social circle, though she does at times feel a bit oppressed by them. In 2010 Lisa was diagnosed with Depression. She has been treated medically and was stable for some time, however in 2013 she started to deteriorate. She was seen by a psychologist as well as by medics. After a further twelve months she had had enough of interventions and decided she wanted to live the remainder of her life in her own way. Her family and friends objected as they could see she would rapidly deteriorate. However with support from professionals, Lisa utilised the Mental Capacity Act (MCA) to set some advanced directives. She was found to be capable of making these decisions under the MCA, and was legally allowed to refuse further intervention. Lisa did indeed deteriorate, and the professionals over-ruled Lisa’s decision and treated her with Electro-Convulsive Therapy (ECT).

These are fictional stories but according to our current systems, this is how they could (and probably would) play out. The only difference between them is that with one there is a medical diagnosis and with the other there is a mental health diagnosis. However, this detail leads to a wholly different intervention. In the first, Lisa is permitted to die in her own way, in the other her decisions are over-ruled. So why the difference?

An ECT machine. Should consent
always be required?
In medical settings a person can give an advanced instruction that they do not want further treatment even if their life is at risk. If they lose the ability to make decisions, the MCA protects their right not to be treated. In mental health settings a person’s similarly expressed preference can be over-ruled if two doctors agree that the person’s life is at risk and appropriate emergency treatments  (ECT  is deemed  as one) can be implemented. The Mental Capacity Act gives people the right to refuse treatment, even if that treatment may save a person’s life. That’s unless that person has been given a psychiatric diagnosis. In the case of a mental health problem a range of treatments (including ECT) can potentially be given without their consent.

This issue has come to the fore because of a recent report which showed that of the 832 people who received ECT whilst detained, in 2012-13, 695 were found to lack the capacity to consent to that treatment.

Let’s return to the example of Lisa. HIV being an immunodeficiency virus, can often have no initial noticeable symptoms, lying dormant before gradually destroying the immune system. It can be up to 20 years before the signs of AIDS develop. The body becomes gradually unable to tolerate infection and with time, there are an increasing number of infections. Treatment can become more and more intense, as can its side effects.  In the later stages there is often decline in cognitive functioning and physical deterioration, leading to death.

When a person is diagnosed with a mental health problem, such as depression, the situation is different. A range of treatments may be offered, including talking therapy and medication. Time may be given for amelioration in the symptoms. However, if difficulties progressed and a person perhaps began to harm themselves or had the inclination and plan to kill themselves, they may be admitted to a mental health inpatient setting. Medication would often increase. If no improvement were noted and the person’s life perceived to be in danger, ECT may be considered.

The most important aspect of the contrast between these two scenarios is that, when someone is diagnosed with a specifically mental health related problem the Mental Health Act (2007) may be applied.  Under the Mental Health Act (MHA) consent to treatment for mental health problems is not necessarily required. While the courts have upheld the rights of a person detained under the MHA to refuse treatment for a tumour, the same person can be forced to have medication (by injection) for psychosis. This  has become the norm for mental health, in stark contrast to the application of the Mental Capacity Act to any other area of care. We have seen legal precedents for many areas of the MCA, including Deprivation of Liberty cases in mental health settings. However, we are not aware of a test case where someone has set excellent advanced directives , setting out their wishes upon deterioration, and stating that under no circumstances do they want to receive ECT.

The recent data on ECT was staggering in terms of how many people were deemed to lack capacity, when the considerations of the MHA come into play. There is work to be done here; we need to see how law courts test the issue. However, regardless of this, there is room for service improvement if the MCA can be introduced better into mental health systems. Could we perhaps move towards a system where we just use the MCA as a total replacement of the MHA?

We can certainly safely propose change in the implementation of the MCA in mental health settings without harm to services; in fact it would improve service provision! Claiming that patients do not have capacity can be easy. Staying true to the empowering ethos of the MCA is harder. It can feel harder still to allow a person to reject an intervention which the professional feels could save their life. Think back to the scenarios set out for Lisa at the beginning of this article and ask yourself why ECT is treated differently. We need transparency of process and more effort to go beyond minimum requirements, instead exemplifying best practice in the implementation of the MCA. As things stand, we often don’t know after the ECT, whether or not a person had the capacity to decide at some point during their involvement with services to give advanced directives in relation to the treatment. The MCA MUST be implemented better, and we SHOULD be incorporating advanced directives for ECT at a very early point, before the deterioration which can lead to ECT being considered. Failing to do so is failing the people we should be caring for.

21 comments:

  1. I have had ECT without my consent and found it extremely traumatic. If psychiatrists were more honest, many would have to admit that they would prefer it to be a first line treatment rather than reserved for emergencies. I was given a series of ECT when suicidal but on two other occasions it was administered for mania before any drugs had been tried. I often became extremely distressed before ECT and extremely angry at the violation of my rights. The staff response to this was to use seclusion and restraint as a way of bringing me into line. I remember seeing in my notes that 'short periods of seclusion and restraint' had helped me to gain insight into my anger at having to undergo ECT. It was utter nonsense, that if anything compounded my difficulties. The sooner we have a Mental Health Act based on capacity, the better. Nobody should be receiving ECT without having obtained their consent.

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    1. I am very sorry to hear that you were assaulted in this way. I want to assure you that if put to a referendum, I would vote to abolish forced psychiatry. There are people in this world that believe you deserve human rights, I am one of them. I caution against calling for forced psychiatry laws based on so called "capacity", all that would mean is, a psychiatrists labels you as not having it, and then rapes your brain anyway.

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    2. Thanks for your compassion. You are right, of course, that if we have a MHA based on capacity it's almost inevitable that the definition of capacity will change and that professionals are unlikely to agree on who does or doesn't have it. As a patient, the lack of transparency around treatment decisions can be particularly hard to bear. The first time I was given ECT I was told that I would have to have eight treatments. I was devastated to learn that a relative had signed me up for the treatment and that I was to be shocked. It was a truly horrible experience, but after the eight had been administered, my doctor decided I needed at least another four 'at a slightly higher dose' and possibly another eight. I was devastated all over again, but thank God it stopped at another four. Relatives will almost certainly believe doctors in these matters and as a patient, you are left in a very vulnerable position - you have no rights if you are under section and no option but to succumb to the dictates of the very powerful people (usually men) who are deciding your fate. It's all so terribly wrong.

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  2. I was sectioned in 1993 during an acute psychotic episode and was given 6 treatments of ECT I found it extremely traumatising and barbaric and found out afterwards that every case of ECT causes brain damage. I had the worst headaches ever after each treatment. I know now that placebo ECT is just as effective but why have ECT when talking therapies, mindfulness, meditation change the brain but without any pain. To me ECT should be banned immediately as it's outdated, cruel and quite unnecessary. Would the psychiatrists who arrange the treatments undergo ECT?

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  3. I am also concerned about NMD (anterior cingulotomies or brain surgery for mental disorder) that is the final stage for people who have had drug treatment and courses of ECT that "didn't work". They are deemed "treatment resistant" and in desperation ask for the brain surgery as a last resort.

    In Scotland the anterior cingulotomy is performed at Ninewells Hospital, Dundee, under the auspices of the Advanced Intervention Service:
    http://advancedinterventions.org.uk/
    funded by NHS Scotland. People are referred to this service and a percentage each year get NMD. Small numbers so far. Eg in year ending May 2013 there were 40 actual assessments, 5 planned anterior cingulotomies and I carried out. 20% of referrals from England.

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  4. George Szmuckler gave an interesting lecture on this issue a few years ago at Gresham College and there is a recording at http://www.gresham.ac.uk/professors-and-speakers/professor-george-szmukler

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  5. Thanks for the blog gents, evening all.

    Firstly let me say that I'm with you in the sentiment that Mental Health law discriminates against people with mental illness as a product of not being centred around capacity to consent. A previous commenter has already linked to George Szmukler's excellent talk (with transcript) detailing the background and his proposal for a 'Fusion Law'.

    I've also blogged about this myself - http://psychiatrysho.wordpress.com/2014/01/12/committed-is-it-time-we-stopped-sectioning-people/

    However, I'm really not sure that ECT is the best demonstration of the legal sidelining of capacity in mental health. In fact, capacity is provided for more regarding ECT than for pretty much anything else in mental health.

    Section 58A of the MHA stipulates that ECT can't be given to someone who has the capacity to make the decision about treatment for themselves, nor can it be given if an Advanced Directive disagrees. http://www.mentalhealthlaw.co.uk/S58A

    A second opinion is also required by law, which is more thorough than in other areas of medicine. Though ECT can be given under S62 in a life-threatening situation without such safeguards, it would be very poor practice to do this whilst aware of an Advanced Directive - but I have never heard of this happening.

    Futhermore, treating urgently to save a life when the full facts of the matter might not be available and cannot be found swiftly is a tenet in all medicine - for example, CPR - so making the critique specific to mental health, particularly ECT, does not feel

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    1. What would one need to show to have capacity to refuse the forced injection of a psychiatric medication that had very unpleasant or even painful side-effects the previous time ? Remembering having had it and knowing that one would experience those side-effects again ? Not so unlikely that someone could satisfy that test of capacity…

      Yet some of those who have commented overlook the fact that people who have been admitted previously are in this position, but have no right to refuse consent for that injection, because s. 3 Mental Health Act 1983 says so. Yes, after three months, a second-opinion approved doctor must endorse the decision, but three months is a long time…

      In the example that @SteWeatherhead and @THEAGENTAPSLEY advanced, it was desired that people would understand that what was being outlined as the very possible outcome of a person who had made an advanced directive being ignored is a contrast with a directive made in respect of treatment for a physical-health condition :

      In other words, even if some commenting say that it would be ‘poor practice’ to overrule a directive, they routinely overrule a patient who has capacity (as suggested) above. Yet why should s. 62(1A) of the 1983 Act (as amended) say that s. 58A does not apply in the case of s. 62(1)(a),(b), i.e. because s. 58A(5)(c)(i) says that it is not necessary, in those cases, to certify that giving ECT ‘would not conflict with an advance decision which the registered medical practitioner concerned is satisfied is valid and applicable’ ?

      Would the advanced directive really continue to respected, if a patient were deteriorating and when s. 62(1)(a),(b) could be invoked – as against the example of HIV ?

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  6. secure.

    Thanks again for the blog.

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  7. I agree with Alex (for once!). ECT is a very poor eg because the law was specifically amended in 2007 to allow patients to make capacitous advance refusals consistent with the requirements of ss.24-6 MCA.

    It is generally true that Part IV MHA is inconsistent with the MCA. But ECT is the exception to this rule. However, since most detained patients only receive medication and nursing care the fact that a detained patient's advance refusal does not need to be respected is a significant restriction on patient rights. The extraordinary list of treatments which have been recognised as treatment for mental disorder under s.63 MHA which a patient could not make a valid advance refusal of indicates the potential issue.

    I don't think anyone collects data centrally on content of ADs, but the people to ask about typical content would be IMHAs. When MH patients make them my guess would be ECT gets mentioned frequently since that refusal has teeth and anyone giving legal advice on an AD should this out.

    The MHAC noted in their first biennial report after s58A came into effect in 2008 that there had been a massive shift in SOAD approvals of ECT - a far greater proportion of patients were being found to lack capacity to consent, where in previous years applications were made on the basis that the patient was capacitous but refusing. This surprised precisely no one anywhere. It is a predictable response to a statutory rule change - people re-interpret rules to achieve the outcome they want. Not, I think, with malice. Doctors sincerely believe their patient who is refusing ECT will benefit from it, but now they have to see their refusal as part of a picture of a wider loss of capacity if they are to treat without consent. But this does indicate the wider problem with using capacity as a threshold to determine when a person can be treated without consent rather than the fact that MH law grants doctors that authority. Capacity itself is a dynamic standard (unless people with severe depression suddenly became substantially less capable of making decisions about ECT in 2008). So if we make capacity the threshold for any form of treatment without consent in MH we may just find more people with MHN are found not to have capacity to make treatment decisions...This has been a common objection to the four decades of arguments for different species of fusion law in the US, Canada and here. The arguments for and against are too complex to rehearse here - there was a special ed of the Journal of Mental Health Law in 2010 which carried articles by Paul Appelbaum and Kris Gledhill which covered almost everything (but you can only get it on Heinonline not public access) and this old but still relevant article by Peter Bartlett (http://medlaw.oxfordjournals.org/content/11/3/326 - sorry also behind a paywall) covers the distinction between capacity-based tests for admission and capacity-based tests for treatment and argues that the former may not be workable but based on the Ontario experience the latter may be workable.

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    1. I'm not sure that I can quite credit that a statutory rule change, when it is not as if it were the enactment of Mental Capacity Act 2005 itself (and a clear statement of the principles that are at the root of determining whether a person has capacity to make a certain [type of] decision), should, under any circumstance, lead to the expedience of people being declared not to have capacity :

      If, as is calmly asserted, 'in previous years applications were made on the basis that the patient was capacitous but refusing', then, whether or not done 'with malice', it is an unacceptable shortcut, to circumvent needing to comply with the requirements of s. 58A(3), to jump straight to the invocation of s. 58A(5) and saying that one has a non-capacitous patient.

      I suggest that it would be nothing short of bewildering to those who drafted, debated and passed s. 58A, if its provisions were to be interpreted in such a way, which I find highly paternalistic : (A) This is good for you. (B) Not seeing that it is good for you means that you need it. (C) You receive what you need, which is good for you.

      I cannot find that this explanation, which has been offered above, in any way excuses what the author suggests is now being done : Doctors sincerely believe their patient who is refusing ECT will benefit from it, but now they have to see their refusal as part of a picture of a wider loss of capacity if they are to treat without consent.

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  8. ECT destroyed my memory. I agreed to it but I wasnt given full information on the horrendeous side effects. I was told there would be shorterm memory loss but ten years later my memory has not returned. There is no reason why anyone's brain should be shocked. The brain is a delicate organ

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  9. Oh, the doctors make it sound all so easy! The figures quoted in the article speak for themselves - large numbers of people are receiving ECT without their consent, and if you look at the referenced report, you'll see evidence that not all of these cases were emergencies. This is not something that should happen in a democracy where human rights and freedom are valued. The impact of ECT remains with me today, 25 years after receiving it a total of 24 times as a highly distressed young woman - and I don't mean cognitively, I mean emotionally. You can't imagine what it is like to receive such a controversial treatment against your will - and to be regarded as recalcitrant and badly behaved because you do not wish to have it. (Indeed, you will be regarded as lacking insight if you object, whereas this is a rational response to a hideously invasive procedure which is of dubious value). The ritual around ECT is likewise disturbing, to the extent that each forced visit to the ECT suite felt like an execution. Having said that, I am not anti-psychiatry and wish to respect the views of those who have found relief in ECT. I was in hospital with several people who said it was the only thing that had helped them. The issue here is CONSENT and the right to sanctity over one's own health and body.

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  10. As recently as 2013, I became aware of a situation where an inpatient was forcibly administered haloperidol against his explicit wishes in a written advance decision - illegal practice that is impossible to justify on ethical or clinical grounds.

    As for ECT, I agree it is more difficult to ignore an advance decision, but many service users are pressured to comply, often having neither the motivation or wherewithal to resist. I've even come across some people who display self-hatred to such a level that they acquiesce to what they see as deserved self-punishment.

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    1. Although I should wish that it were the case (or that I can be proved wrong) that a clear advanced directive that states that haloperidol must not be given should have been heeded, my knowledge of the broad powers of treatment under ss. 2, 3 of the 1983 Act, and my reading of s. 58(1)(b) (as amended), does not encourage me :

      It asserts nothing about directives (which are mentioned in s. 58A), but that consent to administering medicine after the elapse of three months or more either requires consent (s. 58(3)(a)), with the practitioner certifying that the patient has capacity to consent, or the SOAD procedure under s. 58(3)(b).

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    2. I omitted to point out that the service user I was referring to was not under a section of the MHA at the time. So by my reckoning, the service response was synonymous to forcing someone to take a drug in the absence of consent. You are, of course, correct about the MHA potentially being used to overrule an advance decision.

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    3. Point understood and accepted !

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  11. I think it's great that commentators from different perspectives all agree that mental health legislation should be based on capacity. And I think it's great that people seem to be agreeing that Advance Directives should be sacrosanct.
    If those were to be common guiding principles, in reality, we'd be a lot better off - and I think it's fantastic that these principles are aired here.
    I am concerned, however, that these high-minded principles seem somewhat opposed to many people's everyday experiences.
    I'm also concerned at the liberal use of phrases such as 'life-threatening'. ECT - by its nature - is rarely used in an immediately life-threatening situation. I fear that the phrase 'life-threatening' is easily interpreted as 'a person's condition is likely to deteriorate' or even 'a person's condition is very serious', and in practice, I suspect teams (properly resourced teams) would have many alternative possibilities. If alternatives aren't immediately available, I'd be worried.
    I'm often frustrated that discussions such as this imply that we should accept certain premises - when many of us would wish to see wholesale revolution in mental health care. It's very frustrating to read commentators say "but I would;t have started from here".. but it's true.
    These, in reality are always difficult decisions. I discuss this in more detail in my recent book... for tonight, I'm delighted at the degree of consensus that Advance Directives should be respected, and that capacity should be the basis of mental health legislation.

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  12. The dangers and destructiveness of ECT and anti-psychotic drugs have been known for over 25 years. Among other useful books on the subject are Dr. Peter Breggin's "Toxic Psychiatry" (1990). The practice of ECT can no longer be regarded as defensible in any context for any reason. The procedure acts as a non-surgical lobotomy, producing apparent calm that is in fact more often best characterized as fearful compliance with authority and withdrawal from torture.

    Likewise all anti-psychotic drugs are known to damage the brain. On the order of 40% of patients so treated for long periods will develop non-minimal tardive diskinesia, a movement disorder common in Parkinson's Disease. These are not surmises. They are facts documented in published medical literature.

    In a discussion of this sort, I believe it is more than constructive to report the lived experiences of people who have been treated -- and damaged -- by methods considered "mainstream" in the psychiatric profession. It should be ethically required.

    I write as a technically trained medical layman who observes the abuses of psychiatry primarily in reference to the imposition of so-called "psychosomatic" medicine on chronic neurological face pain patients. In a spirit of fair disclosure, my views on this subject have been aired on Dr. Peter Breggin's Internet talk radio hour.

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  13. I’ve been thinking for a little while about whether or not to reply here as I think the comments in the replies above capture much of the important elements of the conversation. However two things have moved me to comment. First, the very powerful and important comments provided by people who have lived experience of the issues being discussed here. I want to acknowledge those comments and thank everyone who has shared their views and experiences; you speak for countless others whom we need to support to the best of our ability. I would like to be part of a system which is always looking to improve itself. This leads to the second reason I am replying. It has been said that the scenario set out above does not happen or at best it is very unlikely to happen. Some have said that ECT is only ever given in ‘life-threatening’ situations and in those cases an advanced directive against ECT would not be over-ruled. If that were the case, we would not need legislative caveats such as those which allow the over-ruling in the first place.

    This is a very complex area, one which sees an interaction between the Mental Capacity Act, The Mental Health Act, and the legal system. Dealing with the complexity here requires openness, sensitivity and care, and the strength not to get drawn into arguments or posturing. It is difficult to maintain an objective stance in such an emotive area. During the discussions that have followed the publication of this blog, I have at times felt close to replying in a more emotionally-driven manner. I do care about this issue and the people it affects, but I don’t want to be drawn in where discussions seem to be taking an unhelpful turn. I believe there is more agreement on how to affect change in this area, than there is disagreement. I personally would like to see the following as standard practice:

    1. Wherever possible have advanced directives part of all admissions to a mental health setting and regularly review them in a meaningful way.

    2. Accept that as sad as it makes us feel, we need to consider this in relation to the right to die context which links the two case examples at the start of this blog.


    3. Gather more information about capacity assessment, support, and decision making. Publish this in the type of report which sparked this discussion.

    I recently put out a call for people to co-produce some research in this area. A few people have replied and as a result we have a small research team in place to study this area. It would be great to also have a psychiatrist as part of this team, so if that could be you, please drop me a line. It would be good to have a psychology, psychiatry and people with lived experience all part of this team. There is much for us to learn here and the potential to make a positive difference.
    Lastly, some of you may be interested in the recent special issue of Clinical Psychology Forum, titled ‘Psychology & psychiatry: Bridging the gap’. It is free to download for a short time - http://www.bps.org.uk/networks-and-communities/member-networks/division-clinical-psychology/clinical-psychology-forum

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    1. Yes, in an ideal psychiatric setting (even if we changed nothing about the medication-based nature of the environment. However, that would have to be given over to a 'beefed-up' right to IMHA (Independent Mental Health Advocacy).

      The reason being that, I know, from regular visits to wards (and do not quite credit that every patient was properly and meaningfully 'told their rights', but forgot), that I was forever explaining why someone did not have to be dangerous, have hurt someone else, or have done anything else wrong to have been sectioned (let alone what the word meant). And, even with a statutory obligation both to make patients aware of IMHA and to refer to IMHA, even that did not quite seem to happen, just as patients would say that they did not know who their primary nurse was...

      This experience, although it may not be indicative of present good practice and what one could expect from the future, leads me to believe that someone other than the ward staff would have to make advanced directives, and their meaningful review, part of all admissions.

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