Mike's Cheeky Blog: It's the MCA, stupid!

mike stone 23/09/17 Dignity Champions forum

There is a recent court ruling by Mr Justice Jackson:

http://www.bailii.org/ew/cases/EWCOP/2017/19.html

in which he 'discards' a Court of Protection Practice Directive. He argued that the existence of the practice directive 'contradicts' the Mental Capacity Act itself - and in keeping with a trend within recent CoP ruling, Mr Justice Jackson is adopting the position that 'following the content of the MCA itself, is what matters'. Hence my title for this piece - a variation on the famous 'It's the economy, stupid!'.

Before I move on, I would like to show a beautifully-worded section of Mr Justice Jackson's ruling:

27 In reaching this decision, I was mindful that this was in effect an application made by agreement and that there are always more investigations that can be made, questions that can be asked, stones that can be turned. Here, I was satisfied that the court had all the essential information and that further inquiries would not alter the fundamentals. I also noted that the medical opinion on M's overall best interests was to some degree influenced by (and might, in the end, be said to have been tipped by) the views of her family. There is nothing wrong with that. For obvious reasons, it is not found in many of the reported cases, which often portray doctors and families in opposite camps, but those cases are surely unrepresentative of the much greater number where a common position is reached through people listening to each other. Just as family members will naturally pay regard to the views of carers and doctors, particularly on the medical aspects of the situation, so doctors will naturally listen to the views of the family about their relative's wider best interests. What is important is that those called upon to express a view should do so conscientiously, drawing upon their personal and professional knowledge of the individual concerned.

There is a paper by Celia Kitzinger and Jenny Kitzinger:

http://jme.bmj.com/content/medethics/42/1/11.full.pdf

which described the experiences of families who had been involved with the applications for CoP rulings, and I have just written a piece about the Kitzinger paper (both are attached here). The Kitzinger paper makes it clear, how difficult it is for families to 'come to terms with' their honestly-held conclusion that 'our loved-one, if he or she could decide, would chose death over continued life in this situation'.

But, any 'conclusion' from that 'emotional challenge' to the effect that 'because the clinicians are less emotionally involved, the final decision should be made by the clinicians and not by the family and friends' is flawed - because, while the 'emotional turmoil' is clearly real and very significant, the MCA requires best-interests decision-makers to 'understand section 4(6) of the MCA'. Almost everyone, agrees that section 4(6) of the MCA can be described as 'the decision-maker must try to work out what the person/patient would have decided, if the [now mentally-incapable and therefore unable to decide] person/patient was him/herself making the decision'.

Recently judges such as Hayden and Charles, have made it clear that the close family and close friends of a mentally-incapable person, because of their earlier 'life experience of the person/patient AS AN INDIVIDUAL', possess insights which they can use when considering section 4(6) - INSIGHTS WHICH THE CLINICIANS DO NOT POSSESS.

It is, in fact, section 4(6) - 'what would the person/patient have chosen?' - which sits at the very heart of defensible best-interests decision-making: and if you look at things from the 'internal logic of' the MCA (and the MCA is about the best decision from the person/patient's perspective - it isn't about 'making life easy for family, friends and clinicians') it is PERVERSE to argue that 'the people best-equipped to consider best-interests [i.e. close family and close friends] cannot make best-interests decisions because they are 'emotionally attached' when the same factor [their life-experience of the patient] equips them to better-consider 4(6) and at the same time makes it 'emotionally painful' for them to do that'.

The simplest way out of this - if it is possible, which is not always the case - would be to try to avoid the need for ANYONE to make best-interests decisions. In essence, that amounts to 'try to get decisions which everyone else simply follows if they become necessary in the future, from patients while patients are still mentally capable': the MCA describes this in terms of Advance Decisions (ADRTs), but there are some problems with ADRTs. There is a rampant misunderstanding of when/why a decision must be in writing (I've analysed that elsewhere and will not do it again here) in order for it to be legally binding, and there is also an 'attitude' to written or verbal ADRTs which involves 'thwarting the instruction by applying too much 'safeguarding' around it'.

However, finally - at an increased pace since about 2014, thankfully! - our judges are starting to shed light on the way the MCA should work, by applying

'It's the MCA, stupid!'

Associated files and links:

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mike stone 27/11/17

I wrote in the above piece, that we should be trying to get decisions from patients while they are still mentally-capable, and applying those 'already-made anticipatory decisions' as necessary in the future, if the patient loses mental capacity.

I recently did a Poll on Twitter:

https://twitter.com/MikeStone2_EoL/status/931819196207509504

The question was:

A mentally-capable adult is 'dying' ['end-of-life' = 'sometime within predicted final year of life'] at home. Who should the family-carers living with their dying loved-one be taking instructions from? Please retweet - an analysis of answers would be 'interesting'.

I allowed 3 possible answers, and 60 people voted, the poll coming out as:

92% From the dying patient

02% From the GP and nurses

06% From nobody

I don't know who those 60 voters were - but many of the people who follow me on Twitter, are doctors, nurses, and other people involved with healthcare. So even if some clinicians were voting, almost nobody believes that family carers take instructions from the GP and the nurses - almost EVERYONE said 'you take instructions from the patient'. Which was certainly my position, when both of my parents were dying and I was a family carer: I definitely did NOT want to 'make' life-or-death decisions, I wanted my parents to make their own decisions. If other family carers are like I was, then:

We push for the provision of treatments our loved-one wants;

We hate the idea of 'making life-or-death decisions after our loved one cannot make his or her own decision any longer' - 'living with a bad decision which I made' is a horrible thought for a family carer, so WE LISTEN CAREFULLY, WE ASK and we are DESPERATE to understand what our loved-one would want to happen;

The only thing worse than being forced to make a best-interests decision for our loved-one, is seeing someone else - doctor, nurse, 999 paramedics - DOING SOMETHING YOU FEEL SURE YOUR LOVED-ONE WOULD NOT HAVE WANTED;

And - crucially - we are THERE IN THE HOME WITH THE PATIENT so WE ARE IN A POSITION TO LISTEN!

Anyone who 'takes the upper-case as 'shouting'' isn't far off the mark (I would use bolds if DiC let me - but 'almost shouting the point' is spot-on, for those points).

As it happens, a couple of days after my poll opened, I was pointed at a Welsh website about 'Advance Care Planning'. I have some serious objections to 'ACP' guidance - mainly because it seems to 'distrust family carers'. I am still to send properly written-up comments to the website, but I posted a sort of 'multi-tweet semi-rant' on Twitter about that website and ACP in general earlier this morning. You can find the first of the series of 7 linked tweets at:

https://twitter.com/MikeStone2_EoL/status/935093494053572615

You will also find the link to the Welsh Advance Care Planning website (it has some short videos, and some other material on it - but, as I've said, I have issues with what we are told on that website and elsewhere about ACP) if you want to check it out yourself.