Argue the Toss: Clinical Paternalism or Patient Autonomy
The BMJ publishes 'head-to-head' articles, in which two people argue for and against a position. I like this so much, that I am planning to introduce something similar on DIC, under an 'Argue the Toss' banner (although I'll be 'arguing with myself'). This is the first one, and it has got a 'partner piece' called 'Argue the Toss: Guidelines or Expertise', but I am waiting for an e-mail reply from Dr Rathbone before I post that one. I am going to post two other 'Argue the Toss' pieces at the same time as this one.
I think that health and social care, needs the laymen (the service users) to be involved in discussions about how care can be improved - and I think that most people can usefully contribute to those discussions. It is in my view wrong and arrogant, to believe that these discussions are 'above the heads of normal people', or that 'only the professionals understand enough to usefully contribute'.
I am not 'claiming any type of ownership' of this idea - if anybody else wants to put up a piece 'Argue the Toss: 'X' or 'Y' I would be delighted for that to happen !
PATIENT AUTONOMY
Dr Philip S Rathbone and I each contributed two 'rapid responses' to a BMJ article about 'departing from guidelines in patients' best interests', and Dr Rathbone's first piece is at:
http://www.bmj.com/content/350/bmj.h841/rr
The BMJ page has got a 'Rapid responses' button on it when that page comes up - click on 'Rapid responses' and it will show all 4 of the responses I mentioned above. Dr Rathbone started his first piece with:
'Fryar (1) is correct that departure from clinical guidelines will not necessarily put doctors at risk of a claim in negligence if something goes wrong. The reference to a patient's best interests, however, requires clarification. The determination of best interests is something, ultimately, for patients to decide for themselves. For example, a Jehovah's Witness may decide that a blood transfusion is not in their best interests because it conflicts with their sincerely held religious beliefs, even though such a decision may result in their death. This right to personal autonomy is robustly defended in law however much unease it may cause doctors.'
Dr Rathbone makes it clear that the [English] law supports Patient Autonomy.
There was a piece in The Independent, June 24th 2013 (carried on pages 1, 6 and 7), by a recently-retired judge.
'Late on a Sunday night, Justice Sir Mark Hedley decided to let a man with mental health problems die of an overdose rather than pump his stomach, because he believed the man "had capacity" to refuse treatment. The judgement was never recorded or published.
Sir Mark, now retired from the bench, said of his ruling: "I decided he had capacity, so he died that night. That's exactly what he wanted to do." He added: "it was a phone call at 10 o'clock on a Sunday night. Actually directly from a consultant at the hospital, though usually they come through lawyers. There would have been no [published] order at all because once I'd made a finding of capacity, there was no jurisdiction for the court to act."'
Again, it is clear that Justice Sir Mark Hedley 'went with patient autonomy' [after having decided that the suicidal patient 'had mental capacity'].
CLINICAL PATERNALISM
Most doctors and nurses, enter their professions with a motivation to help people - so doctors and nurses who can 'see patients making bad choices' struggle to 'handle that'. The clinicians 'want the patient to make the right choice' - and, although doubtless someone will say this definition is wrong, I see 'clinical paternalism' as 'trying to push the patient into making 'the best choice' for 'weak-paternalism', and 'imposing the best choice on the patient' for 'strong paternalism'.
This type of thwarting of patient self-determination, isn't in line with the law in England: but, even setting aside 'the strong desire of clinicians to help', there is another real-world problem. Go back to that suicidal patient, and Justice Sir Mark Hedley. The law does not require, that a judge should be asked about mental capacity - the law actually says that people are mentally-capable until the absence of capacity is proven, and in the case discussed above the mere fact that the patient 'knew his refusal of treatment would lead to his death' seems to demonstrate mental capacity. As for mental health - well, I get lost, when we bring 'mental illness' into things !
But imagine the conversation between the clinicians and the now-dead patient's family, the following day. How many bereaved relatives, would take 'We couldn't stop him from dying, because he told us not to treat him' from the doctors and nurses, without 'screaming and raging' ? In that particular case, the doctor could say 'a judge told us we couldn't treat him' - but that looks rather like 'passing on a hot potato, which I find too hot to hold'. So, I can see why, as Dr Rathbone put it:
'For example, a Jehovah's Witness may decide that a blood transfusion is not in their best interests because it conflicts with their sincerely held religious beliefs, even though such a decision may result in their death. This right to personal autonomy is robustly defended in law however much unease it may cause doctors.'
Although if you think about it, the reference to 'religious beliefs' is a hang-over from an earlier age: the relevant legislation (section 3 of the Mental Capacity Act) doesn't introduce 'why the patient decided as he did', it only introduces 'had the patient been informed of the consequences of his decision'.
An alert reader, will probably have noticed that the idea 'of doing good' is in 'Paternalism', and 'good' seems to be missing from 'Autonomy': well spotted, that is the way English law has settled [I think because it isn't possible, to objectively decide 'whose idea of what is good, prevails': all you do, is to explain in a law, who makes the decision].
There has been a recent court ruling, which will - I believe - push doctors and nurses into asking for patient consent properly.
The official court ruling can be found at:
https://www.supremecourt.uk/decided-cases/docs/UKSC_2013_0136_Judgment.pdf
But unless you like reading 'legal stuff', I would recommend instead the piece by Fiona Godlee, editor in chief, The BMJ:
http://www.bmj.com/content/350/bmj.h1534
As Fiona explains 'Last week the UK's Supreme Court judged that it was for patients to decide whether the risks of treatment and alternative options have been adequately communicated. Nadine Montgomery, who has diabetes, was not told of the risks of shoulder dystocia to her baby boy, who subsequently developed cerebral palsy ' (in plain language, as I understand this, Nadine Montgomery is diabetic, and diabetic mothers tend to have very large babies - there is a risk, because the baby is large relative to the mother, that a natural birth will be difficult: here the baby's shoulder 'got stuck during delivery' and as a result the baby was starved of oxygen for several minutes, which is why the baby developed cerebral palsy).
Extracting from Fiona's article:
'Nadine Montgomery, who has diabetes, was not told of the risks of shoulder dystocia to her baby boy ... Her obstetrician justified holding back this information on the grounds that it might have discouraged her from having a vaginal delivery.
This will no longer do ... As Daniel Sokol explains ... the Montgomery ruling means that doctors will have 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." ... What counts as a material risk? Here the Supreme Court has landed a clear and crucial blow to medical paternalism. Instead of a responsible body of medical opinion, the judgment now rests with "a reasonable person in the patient's position."'
The article by Fiona Godlee was titled 'New rules of consent: the patient decides' and if it has 'landed a clear and crucial blow to medical paternalism', then it has settled the 'toss' in favour of Patient Autonomy.
But, two comments. Firstly, I don't think the Montgomery ruling changed the law in England - I think the Mental Capacity Act is based on 'patient autonomy', and the case has (rather confusingly) effectively decided that the patient autonomy enshrined in English law by the MCA, applied in Scotland (where the MCA is not law) before the MCA became a law in England. Secondly, I think there will be resistance from some doctors and nurses to this court ruling - not only is it harder for doctors if they must get properly informed consent, but some doctors still think 'the decision should not be the patient's to make'.
I will digress a little, in connection with this:
'Instead of a responsible body of medical opinion, the judgment now rests with "a reasonable person in the patient's position."''
Doctors, tend to argue that 'if my actions were in line with mainstream medical opinion' they are 'correct' - I have always argued, certainly for the MCA, that their position is flawed. As I wrote in the PDF which can be downloaded from:
'There is a strange - and to my mind pretty useless - idea [sometimes even expressed by judges - but not, I think, by Mr Justice Hayden] that 'best interests as a term, means whatever is the norm for clinical practice'. This makes no sense at all, for the 'best interests' mentioned in the Mental Capacity Act: it makes no sense, because of section 6(6) of the MCA, combined with the fact that if there were many Welfare Attorneys appointed, it seems clear that most would be laymen.'
I will probably post a separate piece about this, under the Title Fiona used for ehr BMJ piece (New rules of consent: the patient decides) - it seems to involve a certain 'level of intricacy' to discuss the implications properly.
I have already got a piece about this ruling, on the BMJ website as a 'rapid response':
http://www.bmj.com/content/350/bmj.h1534/rr-0
If anybody feels strongly enough about 'doctors being paternalistic and trying to prevent patients from making their own choices' to wish to submit a rapid response to the BMJ, you can usually successfully submit a response for at least a week, and I think not later than about 2 weeks, after the article [which you are commenting on] appeared. The BMJ has no problem with lay-people submitting rapid responses to the letters editor, and if you make a 'different and relevant point clearly', and you get in before someone else, there is a good chance that your comment will be published online. You can include your own e-mail address in a submission, if you would like people to contact you (which, in my experience, they hardly ever do).
I started working my way through the Montgomery ruling, and commenting on it, yesterday - it looks as if that process will be absurdly lengthy, and it will take some time.
But, I can probably explain the fundamental issue re 'consent' quite concisely.
Imagine a theoretical contagious disease - I'll call it 'disease X'.
If left untreated, 75 out of every 100 people who catch disease X make a full recovery, but 25 out of every 100 people die.
Imagine there are two known drugs, which are effective against disease X - drug A, and drug B.
If you treat 100 patients with drug A, none of them will die, and all 100 will make a full recovery EXCEPT that EVERY patient will go completely deaf.
If you treat 100 patients with drug B, 99 of them will make a full recovery, and 1 will recover but with paralysis from the waist down.
My understanding of the state of English law, is that in this type of situation - where it seems obvious that different patients would choose different options - it is NOT any longer acceptable, for 'the medical profession' to 'get its heads together, and decide that 'the best option is ...''.
My understanding is that for individual mentally-capable patients, the patient's doctor would be required to explain those 3 options above and their outcomes (no treatment, and the two different drugs) , and then individual patients would decide what to do.
My understanding is that for mentally-incapable patients, the law now requires that an effort should be made to 'work out which option this individual would have chosen': where it gets 'interesting', is if you cannot be sure enough, of what the patient would have decided. In years of old, in that situation the doctors would have decided what should happen based on 'clinical belief sets'. But now, I think the next thing the law would 'support', is an analysis of 'what patients decide, when they choose for themselves'. So if you had no way of 'applying the incapable patient's own individuality', you need to look at how capable patients decide - if it is known that 80% of patients choose a particular treatment option, it seems reasonable to choose that one.
Although, in my example above, I am not confident that a clear majority of patients would go for one of my three options, BUT THERE WOULD BE THE STATISTICS TO LOOK AT.
I think that is the point - these issues around consent and 'pseudo consent' [for mentally-incapable patients] now hinge on 'how real patients decide', and NOT on 'how clinicians would decide' - as Fiona Godlee's article pointed out:
'Instead of a responsible body of medical opinion, the judgment now rests with "a reasonable person in the patient's position.'
Can I make a request - this is not an entirely simple idea, and I wrote that 'out of my head as I went along' - can some people please post and tell me if I managed to get across the point I was trying to make !