Capacity and Surgery

There is a case reported in the Telegraph today which I found interesting in relation to my work with the Mental Capacity Act – a generally very positive piece of legislation that has affected so many aspects of the way we work.

It is interesting partly because of the rarity of public judgements under the Mental Capacity Act (2005) so anything that comes up tends to be jumped on by practitioners as there is still a lot of vagueness that could do with some  legal clarification.

[picapp align=”none” wrap=”false” link=”term=judge&iid=166857″ src=”0163/d47d70bd-7b4f-4feb-bfb7-28d7b4b06717.jpg?adImageId=13002920&imageId=166857″ width=”234″ height=”176″ /]

The case talks about a 55 year old woman with learning disabilities who suffers from cancer. She is afraid of hospitals and has consistently refused hospital check ups and treatment due to this fear. Initially she agreed to surgery however her fear of hospitals and needles led her to miss appointments and refuse ongoing treatment.  Sir Nicholas Wall, the President of the Family Division agreed with the application by surgeons to operate in his role as presiding over the Court of Protection.

It seems to have been established that the patient did not have the understanding of the impact of her refusal to access treatment and therefore the process of assessing capacity and the judgement that she lacked capacity to make a formal consent were clearly established.

The decision to sedate her in order to admit her to hospital and to carry out what will amount to major surgery without consent is obviously so drastic that the bounds of the Mental Capacity Act were being tested and quite rightly the case was brought directly to the Court of Protection to judge.

It is a balancing act that should be subject to external scrutiny beyond medical professionals necessarily and obviously not being party to all the details, it can be easy to draw conclusions.

From an academic and professional point of view, it is interesting in the way that the Court of Protection  has been used to make a judgement relating to health and welfare, rather than strictly financial matters as had been the case prior to the new legislation. The discussion about ethics and the morality of forcing surgery on someone who lacks capacity to consent is also healthy in the sense that although the decision has been made to go ahead with the surgery, the discussion allows the consideration of her position and human rights along the process rather than simply allowing a dramatic decision to be made on ‘common law’ principles.

Sir Nicholas stated that he released the judgement to assist with other decisions that might be made in hospital up and down the country. I suspect that when there is a need to sedate someone and remove them to hospital, it would still be necessary to go to the Court of Protection for clarification but it allows us to see what some of the thinking behind the decisions would be.

There are, of course, implications that run through A&E departments constantly. There is a difference too, between planned surgery and an action taken in an emergency to prevent the loss of life. Perhaps the real story to take with us is that if we have firm ideas about our wishes for treatment or the lack of it, an advance directive is the safest way to go.

15 thoughts on “Capacity and Surgery

  1. That is a very interesting case. Certainly, there are risks to forgoing a needed surgery. Those risks could be anything from death to disability to disfigurement. And certainly there could less dire consequences to not proceeding with surgery. I certainly hope that the surgery was a life and death scenario because actually having surgery has it’s own set of risks as does just being a patient in the hospital. Obviously without knowing all of the details, you can only speculate as to what happened. I’m just hoping it truly was a life or death situation. Do we know the outcome for her?

  2. As far as I know, this is a ‘live’ issue in that the surgery, is imminent or has just happened – namely the judgement came yesterday and the hospital were waiting for the judgement to go ahead..

    I believe it was life or death – indeed, I expect that were any other outcome (apart from death) a likelihood, it would have been deemed to be against her best interests. For such a drastic decision to be made, I think it would have to be so dramatic.

    I’ll update if further news comes out though..

  3. Very interesting post, thanks for writing it. :o)

    I’m just wondering – would setting up an advance directive have helped this lady? As she was judged to lack capacity to make a decsion about her medical treatment on the basis that she’s learning disabled, wouldn’t any advance directive have been considered invalid for the same reason? (Not rhetorical questions, btw – i don’t know about this stuff and i know you do!)

    I’m also pretty troubled by the fact that, from what i can tell from The Telegraph report, no-one seems to have worried about whether she had the capacity to make medical decisions when it seemed like she had consented to the surgery. If she lacks the capacity to understand the consequences of refusing surgery, then presumably she must also lack the capacity to understand the risks of agreeing to it, so shouldn’t her decision to say yes have been as much subject to review as her decision to say no? As things stand, it looks as though the concern wasn’t so much that she might be incapable of making the decision at all as it was that the particular decision she took wasn’t the one they agreed with. If people are only thought to lack capacity when they fail to agree with people who know “what’s best” for them then that would seem to be potentially rather worrying.

    • Almost certainly an Advance Decision wouldn’t be valid.

      It can only be valid if it’s situation specific. For life threatening situations/refusal for life sustaning interventions, it’s rigorous. It’s suggested it has to be in writing. And make the explicit statement that this decision can result in death. And be signed. And be witnessed. All tricky for a lass with Learning Difficulties to organise.

      Worse, if a clinician wants to ignore it, invariably they can. A barrister told me that they’re legally they’re binding but practically they’re essentially a guide.

      How could the woman write an Advance Directive for this? To be situation specific, and thus valid, she’d need to document, when capacitated, that if she developed uterine cancer (since skin cancer etc would generate different risk/situations/treatments) and this was life threatening, and she haccepted care but then later withdrew consent through fear of needles and hospitals (reasoning needs to be specified) and no treatment will cause vaginal bleeding and pelvic pain and swelling and tiredness then likely haemorrage and death (consequences of not having treatment need to be seen to have been considered), then she would wish to decline anxiolytic medication covertly administered and consequent hospital/surgical care, even though this will inevitably lead to hastening death (with evidence of mode of death considered, so consequences of the Advance Decision being clearly thought through).

      Who could generate such a specific Advance Decision?

      Hence the one legal view offered that they’re at best a guide but at present aren’t often (and can’t be crafted to be) valid for major situations like this.

      • It’s a good point about when decisions are made that ‘we’ deem to be right and going unchallenged and The Shrink is right about advanced directives – it wouldn’t have made any difference in this case and is quite narrow in scope but I was just reminded by some of the issues to highlight it as it’s something I’ve been meaning to do myself at various points (and before going into hospital next week.. eek!).

  4. I think this is an extremely interesting situation. It isn’t often that, to put it bluntly, a person’s right chose loses out over going under the knife. It’s really caused me to take a look at my own ideas around this type of situation. I discussed it with a co-worker, and we agreed that it fits in an ethical-type debate. I mean, this isn’t passive activity – very active in the sense that what’s best for the client involves cutting open her body and that seems to be one of her greatest fears. Does the fear outweigh death? Does she have family involved? What are their thoughts? There are so many factors… it’s such an eye-opening situation.

    • Some more information has come out during the day yesterday – absolutely family would be involved in any best interests decision though as well as other interested parties and anyone who might have an indication as to what her feelings would be.

  5. This is fascinating, thanks for allowing an insight to this cb. I’m a MH student, and have had this capacity act fleetingly swimming around my mind for some time.
    My immediate, or knee-jerky reaction is one of a black or white nature- person clearly is considered unable to calculate immediate seriousness of a decision which involves their consent to improve their well being, indeed to save their life.
    – Further from this I’m now starting to have trouble distinguishing between a person that is mentally well and has still got personal dilemma’s with surgery, hospital, needles etc – considering that this (well) person has full capacity for their own well being they wouldn’t be subjected to tribunal’s to force them to consent and go along with specialist advice and they could freely decide to die as a consequence. This happens time and again with certain religions refusing life saving blood transfusions in the A&E and ITU setting’s.
    I’m positive that medical consultants, doctors and surgeons would start scrubbing up without battering an eye, but whole life consequences will be left to the likes of ourselves?
    As you rightly said cb the capacity act is being tested, and seem’s to me that it needs to be. Hopefully a clearer and more appropriate structure for ‘deciding whats best for others’ will come out of it.
    Kindest Regards

  6. In Canada, if a person does not have the capacity to make these decisions, then typically there is a family member to act as guardian and make these decisions with or for the patient. If there is no family member in the picture, there is the Office of the Public Guardian (provincial) who have social workers to act as guardians and make decisions for/with their clients.

      • Sounds somewhat similar to the process here. In very major decisions the Court of Protection would be involved but the default position is that the ‘decision-maker’ – namely the professional responsible for making the decision would assess capacity and the family have a heavy role unless someone has already been nominated as ‘attorney’ by the Court of Protection in advance.
        It tends to be solicitors who would act through the Office of the Public Guardian (we have one here too!). Social Workers are usually involved a little way down the process as ‘decision makers’ in matters involving social care.
        But before any of the processes kick in, a specific capacity assessment has to take place.

      • Yes, definitely, the deeming (is that a word) that a person is incapacitated must be done, a guardian and/or trustee (dependent on whether it is just financial decisions or all decisions) must be appointed through the courts, but generally this is done at the age of consent (varies from province to province but no less than 18 years of age) or when the incapacitation occurs (like in a brain injury).

  7. Dr Evan Harris’s comment resonates with me. “In A&E departments up and down the country, patients without capacity such as those drunk, drugged, psychotic, confused or with dementia are treated seemingly against their will, day in and day out [so this is] a relatively routine matter for clinical ethics.”

    It’s true. We’re treating incapacitated adults every day. Our local acute Trust has a couple hundred people with dementia or delirium in their beds today. Statistics suggest it’s about 224. Of those hundreds of confused folk, in one district general hospital alone, how many have had formal care orchestrated within the framework of the MCA 2005?

    Treatment of incapacitated adults is so commonplace it’s routine, happening in every hospital, every hour.

    What’s scary is that as Aethelreadtheunread suggests, if the person agrees with us/goes with the flow we accept it. If they don’t, only then do is the MCA 2005 invoked and (usually clumsily) we press on with care, framing is as “in their best interests” but through expediency not adhering to the section 4 Best Interests framework/protections.

    • That’s a good point and it does happen in hospital consistently but I think this case illustrates some of the decisions that are taken and why it is important to have some check of the process when it is so dramatic.

  8. This is really interesting stuff … I’m currently working on issues of how the MCA may relate to health-based situations to which the police are often invited. Typically, circumstances where someone is perceived to be ill and incapacitated (whether through the effects of the illness or whether they are ‘merely’ injured whilst under the incapacitating influence of drink / drugs).

    The police are increasingly being invited to engage in coercive management of patients on behalf of social workers, ambulance crews or GPs, because health have (perfectly correctly) determined that individuals may be at grave risk without medical treatment. It poses big problems, not least because the police need more training on the s4,5,6 aspects of the MCA, but also because removal of someone without capacity to A&E in their best interests, is often greated with misgivings by A&E staff who are asked to consider acting on the GP’s or the Ambulance Crews assessments.

    Of course, the nature of the circumstances where the police are asked to assist / act in an emergency, there is usually no oversight or involvement from the Court of Protection.

    Complex stuff ……

Comments are closed.