Mike's Cheeky Blog: people are not like tins of baked beans, because people are all individuals
One of the people I discuss the Mental Capacity Act with, recently sent me this in an e-mail:
'I've encountered a relative who wanted to withhold the person's necessary insulin for their diabetes on the clearly expressed grounds that, since they lacked mental capacity to decide for themselves, a sane society would not do anything to keep someone alive in that condition.
The person was happy and loved activities they would, by general agreement of their relatives, have sneered at earlier - watching 'Strictly Come Dancing' and eating toad in the hole rather than haute cuisine - but had a right to continue with the life-sustaining insulin in the absence of good reasons to stop it.'
What interests me, is the different way we are expressing our objection to the relative's position: I would not have written '[the mentally-incapable person] had a right to continue with the life-sustaining insulin in the absence of good reasons to stop it'.
My correspondent and I, both agree that it is very difficult to understand why you would not administer insulin in the situation described - but I would have written:
The relative's view that the person's insulin should be withheld because 'a sane society would not do anything to keep someone alive in that condition' is apparently only focusing on the patient's clinical situation, rather than also considering the patient's 'experience of the condition' - we are told that this particular patient 'was happy'. The relative seems to be ignoring the 'happiness' of the patient - and the fundamental approach of our decision-making law (the MCA) is that things must be considered from the patient's point-of-view. Put very simply, if this particular patient seems to be enjoying being alive, it is not obvious how the MCA would lead to 'withdraw the insulin' - but a different patient, in an identical clinical situation, might instead appear to be deeply distressed by the life he or she was living, in which case a decision to withdraw the insulin (which would lead to the patient's death) could be in line with the MCA.
There is a rule, or principle, which I am applying here to MCA best-interests decision-making:
'Any decision about a mentally-incapable person which is made (or more generally can sensibly be made) without considering the individuality of the patient, is NOT a 'genuine' MCA best-interests decision'.
Moving on, I was listening to the second episode of 'We need to talk about death' yesterday, on BBC Radio 4 and presented by Joan Bakewell. The episode was about pain-relief, and it struck me that a discussion about 'the doctrine of double effect' was missing the point - that is, surely, an obsolete concept, post MCA. I'll be writing separately about that - but briefly, the doctrine argued that if a dose of something like morphine was given to relieve pain, and as a side effect the morphine also shortened the patient's life, that was legally acceptable. True in my opinion - but neither necessary, nor 'helpful', any longer: because we are now in a situation where it is legally clear that the risks of a treatment are accepted or declined BY THE PATIENT. The doctrine of double effect, seems to be predicated on the idea of the doctor making the decision about whether to administer the morphine - but now, the law requires the doctor to explain to the patient that 'if I give you enough morphine to adequately reduce your pain, that amount of morphine might also shorten your life' and then THE PATIENT decides. If the doctor knew that the necessary dose would both remove the pain and also quickly kill the patient, then that would be illegal because that would be assisted suicide - but 'shorten (even if you replace 'might' with certainty) your life as a side-effect' surely falls into the category of risks which patients can now legitimately decide to accept. I recently sent a rapid response to the BMJ which can be found at:
http://www.bmj.com/content/355/bmj.i6165/rr
I include some extracts from the Montgomery court ruling in that response, and it seems clear to me that the sections by Lady Hale translate to 'clinicians must describe the risks associated with the treatment(s) on offer, but it is the patient who decides whether to accept those risks'.
Mike this is a very sensitive area, because MCA or not, if the person needing the insulin can make a decision he/she has the right to accept or, refuse it. The person who is responsible for the giving of the insulin should be duty bound to ensure the blood sugar levels are at an acceptable level, administer the insulin as prescribed with the consent of that individual who may well have the capacity to consent, but, should they not surely it is in that individuals interest to give the correct dose in order to save his/her life!
Hi Robert,
If a patient who is mentally-capable is refusing a drug needed to keep him/her alive, insulin or anything else (such as a blood transfusion), then it is probably sensitive, difficult, disturbing and distressing.
But (see my piece also in this DIC forum 'SOME COURT CASES RELEVANT TO THE MENTAL CAPACITY ACT and to BEST-INTERESTS DECISION-MAKING' for judges rulings which make what I am about to write obvious) our law is very clear: unless mental-incapacity is asserted, patients are allowed to forbid the interventions which are necessary to keep them alive. You might regard this as equivalent to suicide, but suicide is not illegal - and while equivalent to suicide, it is not 'assisting a suicide'.
I've just written 2 BMJ rapid responses, which are relevant to this, at:
http://www.bmj.com/content/355/bmj.i6165/rr
http://www.bmj.com/content/355/bmj.i6415/rr-0
The idea that 'we can do whatever is in the best-interests of a capacitous' patient, is now a legally-flawed concept - capacitous patients make their own decisions, and other people's ideas about 'whether the decision is right or wrong, or 'in the person's best-interests'' are no longer relevant (as an aside, I also dislike the use of the term 'best interests' unless the patient is mentally incapable - it is 'conceptually confusing' to talk about 'best -interests' unless we are talking about the MCA's section-4 best-interests decision-making).
This isn't me 'being nerdy' - it is me pointing out, that it isn't acceptable for judges to be explaining that mentally-capable patients can forbid any medical intervention, even if the refusal leads to foreseeable death, and for healthcare professionals to be thwarting that legal right.
So 'very complex' yes - but you cannot safeguard patients from their own 'bad decisions' and also tell them they make their own decisions.
It is made trickier for staff, by certain things which strike me as being 'legally absurd' but which are still being imposed on staff (suicide in hospital being a 'never event' is one, but not the most problematic - the way the 999 Services apply 'safeguarding concepts' when end-of-life patients are in their own homes, is far more troubling).
As a London GP wrote in an e-mail to me a couple of years ago:
'I recently had MCA training and it was made clear that the hope of the act was that it would be empowering of the patient and perhaps the development of the IMCA role demonstrates that aspiration.
We also have the whole 'safeguarding' agenda pushing in the opposite direction.'
As I pointed out in one of those BMJ rapid responses I've pointed at earlier:
'... the law examines whether the patient was informed, and not the eventual outcome of the patient's decision (things such as 'targets' and 'quality markers' almost certainly do look at 'outcomes' - I can only describe this as doctors being squeezed between a legal rock and a 'managerial' hard place)'
Hi again Robert,
I failed to read you post correctly (me being dozy - yet again).
Re your:
'but, should they not (be mentally-capable) surely it is in that individuals interest to give the correct dose in order to save his/her life'
Yes, 'sort of but not necessarily' - it is incredibly difficult, to persuade yourself that a best-interests decision which would lead to another person's death, is the 'right' decision. So I can see why 'saving his life' is usually the decision made by everyone except judges.
That is why I'm so keen on avoiding best-interests decision-making, whenever that is a possibility:
You probably could do that (avoid BI decision-making by getting the decision in advance from the patient) in many end-of-life situations [because the patient is often mentally-capable when terminally diagnosed] - but it becomes virtually impossible to do it, in situations which involve long-term mental incapacity and then life-altering decisions.
This is why we should all make advance directives when we have capacity. There are lots of ways you can do this, from legally based forms, to just making sure that your relatives know what you wish. I have certainly had the conversation with my nearest and dearest and we both know what we would want to happen, even if that does mean a decision that would result in our death.