When Refusing an Intervention more than merely 'risk' is allowable as the reason

mike stone 31/10/16 Dignity Champions forum

I have been briefly discussing some recent guidance from the Royal College of Surgeons, about 'consent to surgery'.

This new guidance was prompted by a court ruling, called 'Montgomery', and there is something which might have been 'lost' because of the specifics of the Montgomery case. I will explain.

The thing that everyone has picked up on, is the clear explanation by the Montgomery judges that a court ruling called 'Bolam' does not apply to consent to treatment any longer: that amounts to, using my words here, 'professions can legitimately be the judges of their own competence when only professional expertise is required - so 'doctors as a body' are the judges of whether a surgeon is surgically competent, but if professional expertise is just one factor in something, then the professionals are NOT 'the judges of correct behaviour''.

The Montgomery case was considering whether a doctor told a pregnant woman enough about the dangers of a natural delivery compared to a caesarean section, and the judges decided that the doctor had withheld information which the woman should have been told - put simply, the judges explained that the woman was the judge of which risks to accept when deciding on how to give birth.

In the context of Montgomery, the wording of the judges' ruling - which is in essence quoted by the RCS guidance - makes perfect sense:

'The doctor is therefore under a duty to take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments. The test of materiality is whether, in the circumstances of the particular case, a reasonable person in the patient's position would be likely to attach significance to the risk, or the doctor is or should reasonably be aware that the particular patient would be likely to attach significance to it. '

What I want to point out, is that this is a narrower application of a wider legal principle - and it is the WIDER LEGAL PRINCIPLE that everyone should 'think back to'.

In particular, it is not in theory 'just the risks' of the treatment.

The wider principle, has been made clear in normal language, in recent court rulings by Justices Hayden and MacDonald:

Mr Justice Hayden, writing about a patient who lacked mental capacity:

'If ever a court heard a holistic account of a man's character, life, talents and priorities it is this court in this case. Each of the witnesses has contributed to the overall picture and I include in that the treating clinicians, whose view of TH seems to me to accord very much with that communicated by his friends. I am left in no doubt at all that TH would wish to determine what remains of his life in his own way not least because that is the strategy he has always both
expressed and adopted. I have no doubt that he would wish to leave the hospital and go to the home of his ex-wife and his mate's Spud and end his days quietly there and with dignity as he sees it. Privacy, personal autonomy and dignity have not only been features of TH's life, they have been the creed by which he has lived it.'

Mr Justice MacDonald, explaining why he could not make a decision once he had decided that the patient who was refusing a treatment was mentally capable:

''others in society may consider C's decision to be unreasonable, illogical or even immoral within the context of the sanctity accorded to life by society in general. None of this however is evidence of a lack of capacity ... C has capacity to decide whether or not to accept treatment [so] C is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society's expectation of what constitutes the 'normal' decision in this situation (if such a thing exists). As a capacitous individual C is, in respect of her own body and mind, sovereign.'


It is clear, if you read recent ruling such as these, that our law is now based on 'respecting the autonomy of people as individuals' - so, in refusing or accepting offered treatments 'a mentally-capable patient is entitled to make her own decision on that question based on the things that are important to her, in keeping with her own personality and system of values and without conforming to society's expectation of what constitutes the 'normal' decision in this situation', and during mental incapacity decision-making looks beyond the clinical situation towards 'the creed by which he has lived'.

The significance to the new Royal College of Surgeons' guidance, is that (and I would add, it is actually 'an intervention' that people are allowed to refuse - not just 'treatments') a patient could refuse an offered intervention, for reasons which have nothing to do with 'risk'.

Examples are 'tricky', but I'll explain the legal principle. Suppose that the surgery involves either a drug, or a specific surgical technique, which is known to be very safe - so, 'not risky'. But, let us also suppose that this thing - the drug or the technique - was developed by means of unethical and immoral experimentation on prisoners. A patient with strong views about that, could legitimately say 'I'm not accepting that surgery - because it would be immoral to benefit from it'. In fact, I think I'm right to state that the patient can refuse the offered surgery on the basis of his/her own belief that the drug/technique was developed by immoral means even if that belief is factually incorrect - and, that when refusing, the patient does not actually need to mention his/her reasons for refusing.

There is a definite danger, that 'the meaning of the law' becomes lost by concentration on snippets from court cases, instead of reading the court cases as a whole and 'understanding what the ruling meant'. Which is why I'm a little bothered by the over-simplification of 'consent is only about risk' which could be 'taken from' that wording in the RCS guidance.

Mr Justice Hayden, in the same court case, did comment on this 'you've missed the point' issue, when he told us:

55. I must record that the Official Solicitor's lawyers appear not to share my analysis of the cogency and strength of TH's wishes regarding his treatment. I confess that I have found this surprising. If I may say so, they have not absorbed the full force of Baroness Hale's judgment in Aintree and the emphasis placed on a 'holistic' evaluation when assessing both 'wishes and feelings' and 'best interests'. They have, in my view, whilst providing great assistance to this court in ensuring that it has the best available medical evidence before it, focused in a rather concrete manner on individual sentences or remarks. To regard the evidence I have heard as merely indicating that TH does not like hospitals as was submitted, simply does not do justice to the subtlety, ambit and integrity of the evidence which, in my judgment, has clearly illuminated TH's wishes and feelings in the way I have set out.

The Hayden case can be found at:

http://www.bailii.org/ew/cases/EWCOP/2014/4.html

The MacDonald ruling is Neutral Citation Number: [2015] EWCOP 80 Case No: COP 1278226 and I find the url to it does not 'copy' properly for some reason. But there is (or was) an online Guardian article about the ruling, and there is a link to the court ruling inside the article (and that link worked - that is how I got the ruling).

The Guardian article is at:

https://www.theguardian.com/uk-news/2015/dec/02/court-grants-impulsive-self-centred-mother-permission-to-die

You might (no promises) get directly to the MacDonald court ruling via:

http://www.bailii.org/cgi-bin/markup.cgi?doc=/ew/cases/EWCOP/2015/80.html&query=court+and+of+and+Protection+and+Justice+and+MacDonald+and+sparkle&method=boolean

A less important comment, which it makes sense for me to include here, follows from my position as explained above, that 'refusing surgery is an example of the wider principle of refusing interventions in general'. The RCS guidance does accept that - it says on page 6:

'Patients have a fundamental legal and ethical right to decide what happens to their bodies. It is therefore essential that patients have given valid consent for all treatments and investigations. For the purpose of this document, consent refers to the right of patients to decide what, if any, clinical care they are to receive and the duty of surgeons to ensure that patients have given their permission prior to any treatment, examination or intervention.'

It immediately follows, that I dislike this section (on page 16) of the RCS guidance (it isn't the 'instruction' I dislike - it is the wording used: I dislike the use of 'procedures as opposed to treatment', and it is not legally relevant whether the procedure is 'investigative', 'curative' or even 'palliative', the principles beneath consent are unaffected):

For minor investigative procedures (eg arthroscopy, gastroscopy, colonoscopy, cystoscopy) as opposed to treatment, it is reasonable for staff who have had specific training to carry out the consent discussion with the patient.

I would have been happier with wording along the lines of:

For less-invasive interventions (eg arthroscopy, gastroscopy, colonoscopy, cystoscopy) as opposed to more-invasive surgical interventions, it is reasonable for staff who have had specific training to carry out the consent discussion with the patient.

CLOSING NOTE: the RCS guidance is a good description of the law around consent for mentally-capable patients, although I would prefer people to read and think about the Mental Capacity Act itself (NOT - and I say NOT - the MCA's Code of Practice !).

The RCS guidance is titled:

Consent: Supported Decision-Making A GUIDE TO GOOD PRACTICE

It was published just a few days ago, and you should be able to find it by Googling 'Royal College of Surgeons' [of England] and looking on the RCS website.


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mike stone 31/10/16

I want to comment about something, and as part of the comment is about something inside the new RCS guidance, here is as good as anywhere.

Baroness Ilora Finlay, who is the lead on a 'forum' intended to promote improved implementation of the Mental Capacity Act, and so should understand the Act, wrote a blog piece at:

https://socialcare.blog.gov.uk/2016/07/22/dignity-safety-liberty-watchwords-for-the-mental-capacity-act/

In her piece, she included this wording:

'Any care decisions must be taken with a view to preserving their dignity, safety and liberty as much as individual circumstances allow. And even if that person is deemed unable to make their own decisions, they must still be an active participant, as far as possible, in processes intended to keep them safe and healthy.'

This simply ISN'T what the MCA says - it is FAR MORE COMPLEX than '[being] intended to keep mentally-incapable people safe and healthy'.

There is a court ruling at:

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

In it, Mr Justice Peter Jackson ruled that a mentally-incapable patient with a gangrenous foot, who was strongly resistant to its amputation, must not have the operation unless he changed his mind and stopped objecting to the amputation. Without the operation, the patient would inevitably die quite quickly.

Mr Justice Jackson ruled that the operation would not be in the patient's best interests - in other words, that it was in the patient's best interests to allow him to die from his gangrenous foot, instead of allowing the amputation to take place.

How can you make that fit with 'best interests is about keeping mentally-incapable patients safe and healthy' ?

You CANNOT - so Baroness Finlay, is explaining the MCA incorrectly, in a blog intended to promote better implementation of the MCA.

There is a description of the MCA, on page 24 of the RCS guidance. The description is a good one - except, this sentence is included in the description:

'The Act aims to balance the patient's right to autonomy in deciding which, if any, treatments they are to receive with the right to protection from harm for those patients who lack the capacity to make decisions for themselves.'

The MCA does NOT do that - there is not any 'balancing' between the right of a mentally-capable person to autonomy, and the protection of best-interests decision-making for mentally-incapable people.

The Act says that for any particular decision, at a specific time, either the person is mentally capable, or the person is not mentally capable: that is in no way 'a balance', it is a separation !

If you remove that sentence, then the chunk of text it was inside, is then both correct and also not 'confusing' - removed, you are left with:

The Act stipulates that all adults (persons over the age of 16) have the right to make decisions for themselves unless they can be shown to lack the capacity to make a decision for themselves at the time the decision needs to be made. The Act further states that people must be provided with all reasonable help and support to enable them to make decisions
for themselves or, where this is not possible, to maximise their participation in any decision-making process.

It states that any decision made on behalf of someone who lacks capacity must be made in their best interests and should, where it does not negate their best interests, minimise any infringement of their basic
rights and freedoms.

mike stone 01/11/16

I might as well add this here - again, it needs explaining somewhere.

The new Royal College of Surgeons guidance about consent, does point out that the surgeon needs to be sure that the patient was adequately informed before consenting to the surgery. The guidance describes the process of ensuring that this is the case, as supported decision-making: put simply, the law is 'Informed Consent' and Supported Decision-Making describes the process by which the surgeon is confirming that 'Informed' in Informed Consent.

But, the law isn't quite the same thing, for consent to treatment, and refusal of treatment. And - why I'm writing this piece - it is now very clear to me, that people see the law differently depending on where they are standing: see, for example, my pieces at:

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=882&forumID=45

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=870&forumID=45

http://www.dignityincare.org.uk/Discuss_and_debate/Discussion_forum/?obj=viewThread&threadID=897&forumID=45

In particular, you cannot consent in advance if you anticipate a loss of future mental capacity - but you can refuse an intervention by means of an Advance Decision (ADRT). See sections 24-26 of the MCA, and note that the full name is 'Advance Decision to Refuse Treatment'.

You do not need to involve a doctor, when you create a written ADRT - it must be signed, witnessed, etc, to meet the criteria for 'validity', and it must be clear about what treatment you are refusing [and you can make the refusal contingent on circumstances you specify - this is frequently misrepresented within clinically-authored material about ADRTs as 'you must specify the treatment being refused and the circumstances in which the refusal applies' but that SIMPLY ISN'T TRUE {I'll copy in the relvant sections of the MCA below}].

However, the main point of a written ADRT, is to give your decision to clinicians who can only read it when you cannot AT THE TIME 'just tell them you decision face-to-face'.

AND CLINICIANS READING A WRITTEN ADRT CANNOT ASK EITHER IT, OR YOU, QUESTIONS - the clinician cannot investigate 'how informed you were when you wrote it'.

This is a good place to copy in the relevant sections of the MCA:

XXXXXXXXXXXXXXXXXXXXXXXXX

24 Advance decisions to refuse treatment: general

24(1) "Advance decision" means a decision made by a person ("P"), after he has reached 18 and when he has capacity to do so, that if-
(a) at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and
(b) a t that time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued.

(2) For the purposes of subsection (1)(a), a decision may be regarded as specifying a treatment or circumstances even though expressed in layman's terms.

(3) P may withdraw or alter an advance decision at any time when he has capacity to do so.

(4) A withdrawal (including a partial withdrawal) need not be in writing.

(5) An alteration of an advance decision need not be in writing (unless section 25(5) applies in relation to the decision resulting from the alteration).

25 Validity and applicability of advance decisions

(1) An advance decision does not affect the liability which a person may incur for carrying out or continuing a treatment in relation to P unless the decision is at the material time-
(a) valid, and
(b) applicable to the treatment.

(2) An advance decision is not valid if P-
(a) has withdrawn the decision at a time when he had capacity to do so,
(b) has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates, or
(c) has done anything else clearly inconsistent with the advance decision remaining his fixed decision.

(3) An advance decision is not applicable to the treatment in question if at the material time P has capacity to give or refuse consent to it.

(4) An advance decision is not applicable to the treatment in question if-
(a) that treatment is not the treatment specified in the advance decision,
(b) any circumstances specified in the advance decision are absent, or
(c) there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.

XXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

Now, I would draw attention to 25(4) - the final section of those extracts from the MCA, and the one relevant to a person who is reading a written Advance Decision.

Imagine that I have written an ADRT, because I'm a racing driver, and I'm concerned with controlling medical interventions if I'm left 'comatose' after a crash. I've forbidden a treatment.

The 'tick-list' goes:

25(4)(a) Is the treatment I'm refusing specified ? Assume yes.

25(4)(b) [this section is 'expressed awkwardly'] Was my refusal subject to a qualification which is not present ? Assume the answer is that any 'qualifying circumstances' I inserted are met (read 24(1)(a) if you can't see my problem here !).

Now, why might my refusal be ignored ? - only if 25(4)(c) applies.

What does 25(4)(c) say ?:

[the refusal can be over-ridden if] there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.

The first part is not tricky - but IF YOU DON"T KNOW WHAT I HAD THOUGHT ABOUT then how can you 'reasonably believe that a new circumstance WOULD HAVE AFFECTED my decision if I had known about it '?

My answer is 'you cannot reasonably know that'.

My reading of section 25(4)(c), is that unless you knew me really well before I created the ADRT (and obviously people such as 999 paramedics and A&E staff wouldn't have known me) then YOU CANNOT REASONABLY CHALLENGE MY REFUSAL USING 25(4)(c).

Paramedics, think that things like 25(4)(c) mean they MUST UNDERSTAND THEIR PATIENTS - I see it as 'understanding might help, but if you don't know the patient, you are not allowed to dispute his decision'.

Surgeons can normally 'ask if in doubt' - but you cannot ask a written ADRT what it means, or what its author understood at the time of its creation.

These perspective differences are VERY DIFFICULT TO DEAL WITH !

But we should be trying to thrash them out !