Gloucestershire LINk provided a Mental Capacity Act training event on November 25th, which I attended along with about twenty other members. The presenter was knowledgeable and capable, and there was some lively discussion, yet some important things were left unsaid.
The Mental Capacity Act 2005 looks deceptively simple…until you try to work out what it means. It has some poetic turns of phrase, like this one, that suggest training would be a good idea:
(6) Subsection (5) is subject to section 18(3).
Using the word ‘training’ for an event like this seems inappropriate, though. After training, I would expect to be able to do something I could not do before. This event was purely for information. It did not train anyone to do anything.
On the face of it, the information content should have been good. The main presenter, Tina Kukstas, is head of Nursing and Development in older peoples services at the 2gether NHS Foundation Trust (Gloucestershire’s mental health trust). She described herself as “a Mental Capacity Act anorak”. She was assisted from time to time by David Pugh, Mental Health Act Implementation Manager at Gloucestershire County Council.
As it happens, what with the weather getting wintry, I bought myself a nice anorak only last week. The thing I don’t like about them is the hood. It restricts your vision to the sides, and I like to be able to see around me even in bad weather. So I much prefer a hat, and I shall probably leave my anorak’s hood folded away in the collar.
Ms Kukstas’ anorakhood has similarities. It seems to give her a degree of tunnel vision in which the Act is isolated from its surroundings of real-life difficulties and consequences. So one way of describing the event would be that it was very focussed on the Act itself, but another way would be that it gave a rather narrow view of a complex and difficult subject.
Social Care Institute for Excellence
One of the best places to find out about the Act, I discovered only later, is at the website of the Social Care Institute for Excellence (SCIE). One of the best starting points there is the set of four very professional videos they have produced. Look below each video for the key messages it illustrates — see: Mental capacity
SCIE is a fake charity, created and almost entirely funded by government to support government policy unconditionally while seeming independent. Rather than repeat the content of the training event here, I cannot better SCIE’s summary: At a glance 5: Mental Capacity Act 2005
For much more detail, including recent court judgements in relation to the Act, start from SCIE’s main resource page for the Act: Mental Capacity Act (MCA) Resource
You’d expect that the SCIE would feature in the training event I attended, and even perhaps that one of their videos might be used to introduce the whole subject. Wrong. SCIE was never mentioned. Not in the presentation. Not in the handouts. One of the handouts, Making decisions: A guide for family, friends and other unpaid carers, even has a four-page list of relevant organisations, but SCIE is not in the list.
Working and failing
The presentation was conducted as if the Act had only just come into force, full of promise for the future. In reality, it has been in force since 2007 and there is already some disquiet about the effects it is having.
For an excellent overview of the ways in which the Act is working and failing, you can read the debate about it in the Grand Committee of the House of Lords that took place at the end of March this year. (It was, of course, just before the General Election, and Lord Bach, speaking for the then Labour government, made a little joke about that.) The debate is recorded in Lords Hansard here, continuing here.
For example, Baroness Finlay of Llandaff, professor of palliative medicine at Cardiff, noted how the Act has sometimes interfered with good judgement:
The framework for best-interest decisions has perhaps been overinterpreted in some physical care settings, so that things that ought to be done as part of basic care have been excessively deliberated over, and the Act has been used as an excuse for risk-averse rather than risk-intelligent behaviour.
She went further, questioning whether complicated law like this really improves people’s everyday lives:
Does it successfully illuminate the complexities of grey everyday areas by disentangling the overwhelming web of processes that people are faced with, or does it confuse them more? Is the law empowering and reassuring the many people who are touched by the loss of mental capacity, or does it present frightening hurdles?
SCIE’s first video unwittingly illustrates Baroness Finlay’s view. In the video, Emily is an old lady in a care home. She likes to make herself a cup of tea, but staff worry about her using a kettle. Does she have the capacity to understand the risks? Does locking her out of the kitchen deprive her of liberty?
Emily walks with a stick and her hands shake. You see her at 00:47 steadying herself with one hand flat on the worktop while she pours from a teapot with the other hand:
The staff have a meeting. All the Mental Capacity Act boxes are ticked. Staff hide the kettle and provide Emily with hot water in an insulated lever-action dispenser.
At 06:58 you see Emily using the new dispenser. She has to hold the teapot with one hand and operate the lever with the other hand. Because she needs to use two hands, it’s much harder for her to steady herself and much less safe, in my opinion:
I have often seen people spilling hot liquids with those lever-action dispensers. The Act resulted in smug staff but impoverished care.
The training session allowed time for just a few questions from participants. The first of them was about unwise decisions. The Act itself specifically states at 1(4) that:
A person is not to be treated as unable to make a decision merely because he makes an unwise decision.
However, at 3(1)(a) it states that a person is unable to make a decision for himself if he is unable:
to understand the information relevant to the decision
The difficulty that always arises in practice is that a carer who disagrees with a person’s decision will always attribute that disagreement to lack of understanding, invoking 3(1)(a). The protection of 1(4) can never be relied on.
Questioned about this, Ms Kukstas seemed unable to understand that there’s a built in conflict of interest in these situations, and that the Act does not provide real protection. Seeing her getting into difficulties, Mr Pugh interrputed the discussion and changed the subject to mental health.
Another good point from a participant was that the term ‘advocacy’ is used in a confusing way, apparently to mean different things in different circumstances. Some people just need independent advice, she pointed out, so as to put them in a position where they can make their own decision.
But the system is not necessarily set up that way. At 1(3) the Act states:
A person is not to be treated as unable to make a decision unless all practicable steps to help him to do so have been taken without success.
And at 36(2)(a) the functions of independent mental capacity advocates may include:
(a) providing support to the person whom he has been instructed to represent (“P”) so that P may participate as fully as possible in any relevant decision;
(b) obtaining and evaluating relevant information;
Yet elsewhere the Act uses the word ‘represent’ for the work of an advocate, making it seem that an advocate is only appropriate when the person has already failed a capacity assessment and needs someone else to represent him. There is no clarity around an advocate’s role as one of the “practicable steps” in 1(3).
Again, Ms Kukstas struggled to grasp the practical implications. Mr Pugh advised that advocates in the context of the Act only deal with decisions about serious medical treatment and accomodation. However, that is not necessarily true because Section 41 of the Act allows the role of advocate to be expanded, possibly in different ways in different parts of the country. The Act only specifies the minimum role for advocates.
As with all of these discussion topics, the complexity of interpreting the Act in a real-life scenario tended to become overwhelming after only a few sentences had been spoken.
I was one of about eight in the ‘blue’ group, where we first discussed this question:
If a person does not have any family or friends and there is an important decision to be made should they have representation from an independent source?
The short answer, of course, is: No. According to the Act at 1(2):
A person must be assumed to have capacity unless it is established that he lacks capacity.
As we discussed this, Ms Kukstas visited the ‘blue’ group and mentioned that independent mental capacity advocates (IMCAs) are not involved in as many decisions as was first thought. It turns out that most people do have someone like a family member or friend to represent them.
Later, however, Mr Pugh remarked that the IMCA service is “generally underutilized, and there is a lot of work to do” implying that IMCAs should be involved in more decisions.
A third point of view was expressed by Baroness Barker, (who formerly worked for Age Concern), speaking in the House of Lords debate:
…about the appointment of independent mental capacity advocates…I will simply say that there appear to be too few of them.
So which is it, I wonder? Are there too few, or too many? And if there are too many, is that because they are not being used enough or because they are really not needed very often?
Advance care planning in Gloucestershire
A final twist in the event was the pre-announcement of a campaign to get the people of Gloucestershire to plan in advance for their future care. The campaign will commence in January. People will be invited to fill in a 20-page document that includes such thought-provoking questions as:
Is there anything that you would ideally like to avoid happening to you?
How would you like your final days to look and sound (e.g. what music/pictures/fragrance would you like around you?)
It is not quite as bad as I make it sound, because some of the twenty pages are information, and the whole thing is in large print—the version I saw, anyway. I’m hoping the version I saw was not the final draft. It still has some mistakes of wording, like ‘directive’ where it should say ‘decision’ to match the wording of the Act.
Unfortunately there are some more worrying errors. For example, hidden near the end of the accompanying guide booklet there is the key information:
no one is obliged to carry out advance care planning.
The main questionnaire does not say that anywhere. The implication is that everyone must fill it in, make four copies (or should it be three copies?), and update them at least twice a year.
A more serious error is that the advance statement on pain relief uses the meaningless word ‘appropriate’ instead of specifying what you actually want. The decision to be made is whether, in the case of a painful terminal illness, you want pain relief and an earlier death, or whether you want to live as long as possible despite being in pain. Encouraging the people of Gloucestershire to fudge this kind of decision does them no favours.
Also serious is the omission of other specific positive instructions. For example, it is possible to decide in advance that you wish to be kept hydrated even if a medical condition means you are too ill to drink and cannot give consent to being hydrated by other means (like a drip into a vein).
The Act has caused chaos in the area formerly known as ‘Living Wills’ by separating advance decisions from advance statements. Advance decisions are when you refuse treatment in advance, and they can be legally binding under the Act on the people who are looking after you. Advance statements are when you request treatment in advance, and they are not legally binding under the Act.
The Gloucestershire document looks as if it has been cobbled together from older documents that used the ‘advance directive’ terminology, and it has not been brought up to date properly with separate sections for advance decisions (treatment you refuse), and advance statements (treatment you request). Although it does have a section with the title, “Statement of your wishes and care preferences”, that section is (deliberately, it seems to me) woolly.
A further indication that the document has not been brought up to date is that every time it mentions lacking the capacity to make decisions, it implies that the incapacity is absolute. The Act, on the other hand, operates on a decision-by-decision basis, because people often have the capacity to make some decisions but not others.
None of this controversial stuff was addressed by the presenters.
After only this two-hour session, it was clear that the Act has serious flaws. The situations that arise between professionals, family and patients can already be complicated enough, and the Act’s imposition of complicated process does nothing to help. By diverting attention from outcome to process it may make people’s lives worse, just as in the case of Emily in the video.
Only a little further research shows up wider-ranging flaws making the Act less effective than it should be — slow and expensive legal process, unresponsive bureaucracy, and lack of education about the Act amongst professionals. I enjoyed the event, and I admired the presenters’ knowledge and commitment, but I am dismayed by what I have learned.