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Nurses must ‘reflect’ new end of life care standards


There is something unedifying, about anonymous name-calling. Anyway, getting back to end-of-life. It is clear – and I base this not on NT but on much wider observation – that either contemporary judges and I (we usually seem to agree about the law), or else a lot of clinicians, have got things wrong. It isn’t all that easy, to contend that as a body most judges have got the law wrong: the simplest contention, is that for various reasons, the beliefs of many clinicians have not yet caught up with our law. I’ll get to CPR as a special case (actually, ‘the easiest to analyse’ case) later, but the law is basically very simple, and very clear in what it does tell us, and what it doesn’t tell us. The appropriate law is the Mental Capacity Act, and what we know about the MCA is: 1) Mentally-capable patients make and express their own decisions – the role of clinicians is to inform the patient of clinical factors such as prognoses. This is described in section 3 of the MCA – you can call it Patient Autonomy or Informed Consent, or Considered Refusal. It is NOT ‘shared decision-making’ if by that term there is any implication that the decision is made by more than one person – the decision [about whether to accept or refuse any offered treatment] is unequivocally made by the patient. The MCA is only law in England and Wales, but the Montgomery ruling applied informed consent in Scotland [and from a time before the MCA]. Many clinicians seem to think that informed consent is only valid if the patient is fully informed – this simply isn’t the case. The law is based not on the patient ‘knowing everything’ but on the premise that the clinician must, to have obtained valid consent, have told the patient about all clinical factors (which the clinician is aware of) which might have affected the decision the patient reached. An identical concept can be found in section 25(4)(c) of the MCA. Conceptually, you can imagine a doctor offering a treatment, and the patient saying ‘no’. The doctor can keep adding a series of ‘are you aware that ...’ bits of information, and the patient can after every new bit of information just say ‘no – I’m still refusing that offered treatment’. Mr Justice Peter Jackson explained in one of his rulings: "JB is not required to understand every last piece of information about her situation and her options; even her doctors would not make that claim.” Mr Justice Jackson also made clear the distinction between the law, and the ‘ethics’ which doctors usually prefer to law: "The temptation to base a judgment of a person's capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided. That would be to put the cart before the horse or, to put it another way, to allow the tail of welfare to wag the dog of capacity.” It isn’t at all obvious – there are in my view strong reasons to believe that the opposite is legally true – that a patient ‘is required to explain why he/she decided as he did’. I think there is absolutely no requirement, for a patient to explain ‘why I decided as I did’ (and that is interesting, and challenging, as soon as such a patient loses mental capacity – think about 4(6)). 2) The patient autonomy of 1), can be projected into future periods of mental incapacity anticipated by the patient, for refusals of potential treatments by means of Advance Decisions, or the patient can appoint a Welfare Attorney to make any required best-interests decisions. 3) Welfare Attorneys and Court Deputies are the only people the MCA gives legal POWERS to re best-interests decision-making – the Act imposes a legal DUTY on anybody who makes a decision to satisfy 4(9). But I cannot find anything in the Act itself, which restricts who can make any best-interests decision (most clinicians disagree with me – they can never prove by pointing at the Act, where I’m wrong). 4) The MCA covers ALL ‘consent law’ for adults: it is Informed Consent during mental capacity, and section-4 best interests during incapacity [unless the patient has already made and expressed the necessary decision]. This doesn’t – interestingly – cover all LEGITIMATE decision-making, but it DOES cover all ‘consent’ law. The bit it doesn’t cover, is the ‘we couldn’t afford to offer you a potentially effective treatment, because it would cost too much, and the NHS ‘has to be fair to all’’ aspect. 5) Unlike patient autonomy during capacity, nobody is at sure sure about ‘the rules’ for best-interests decision-making in terms of any analysis of ‘the ‘correctness’ of the decision’. The law isn’t framed in those terms (i.e. it doesn’t describe decisions as either good or bad) – all we really know about MCA best-interests decision-making is: a) the decision is very strongly connected to the patient’s personal (not clinical) individuality; b) whatever satisfactory best-interests decision-making involves, a typical layperson must be able to arrive at satisfactory best-interests decisions (this immediately logically follows from the provision for Welfare Attorneys to be appointed – and it follows from the provision, not whether or not there actually is a welfare attorney appointed). If you think I’m right, or might be right, the following elaborate a bit – and if you think I’m wrong, you won’t follow up any of these What is special about CPR, is that the clinical outcome of an arrest and CPR which does then re-start the heart, is so uncertain that it cannot be usefully described by any clinician in advance: this makes it much easier to think about whether you would decide to forbid future CPR, than if for example you were thinking about a stroke which might happen in the future. The thing clinicians seem to find the most difficult to accept, is the logical consequence of Informed Consent: FOOTNOTE: the earlier links to my Dignity in Care pieces do not work in NT. But the ‘guts’ of one thing I tried to link to, is so thought-provoking that I’ll copy it here: Should decisions be made by whomever is logically the best-qualified to make the decision, when several potential decision-makers are present at the same time ? I was recently sent, as part of a longer e-mail from a consultant hospital doctor, and in the context of a wider discussion hinging on the differences between patients who are at home and patients who are in hospital, the following: 'The common law already provides for the "necessity principle" where doctors can apply life saving treatment to people acutely ill and at serious risk without knowing whether or not they would consent because the patient is too ill to do so and they don't have time to find out or anyone to ask (e.g. in someone bleeding to death or with dangerously low sugar readings or fitting repeatedly)' Now, I agree about this principle, but I'm usually discussing behaviour for patients who are on some sort of 'end-of-life register': and, I often discuss the situation of patients who are at home, 'collapsed and unconscious', and when 999 paramedics and family carers are involved. The question, is rather more complex than 'does 'necessity' exist ?' - the question, is 'when is 'necessity' justifiable ?'. The legal defence of 'necessity' is based on 'justifiable ignorance'. The legal protection the MCA offers to a decision-maker, is based on the application of an 'adequate understanding of the situation' and the ACQUISITION OF THAT UNDERSTANDING is an 'implied duty' within the Act. If an unconscious patient arrives at A&E unaccompanied, necessity has to apply. If an unconscious patient arrives at A&E accompanied by a family carer, the question is does the family carer's understanding of the situation make an application of 'necessity' inappropriate ? If a patient who is on some sort of 'EoL register' collapses at home, and a family carer calls 999 to be more certain of the medical situation, isn't the family carer's decision about what should happen next (a decision, which the carer MUST defend in terms of the MCA's test - as a long-term carer for the patient, a failure to satisfy 4(9) of the Act 'would be negligence') logically 'better' than any decision made by a 999 paramedic which would be defended by 'necessity' ? PUT SIMPLY, isn't a decision made by the person who understands the situation best (there, the family carer – providing the paramedic provides details of the medical situation) the best decision available ?

Posted date

10 July, 2016

Posted time

12:39 pm