Does the bill add up?

Drafting legislation must be a demoralising task. You sweat for
months to put together a bill to deal with a longstanding legal
hole, and in response you get a roar of disapproval. You listen
attentively and painstakingly draft a new bill taking account of
the concerns. The response is another flood of criticism. The old
truism that you can’t please all the people all the time has never
seemed more apt.

Such is the lot of the civil servants who have put together the
Mental Capacity Bill, the second version of which was launched in
June. The draft Mental Incapacity Bill, published almost exactly a
year ago, was the result of a tortuous legislative process,
starting with a six-year consultation on mental incapacity in 1989,
followed by the green paper Who Decides? in 1997, and a
policy statement, Making Decisions, in 1999. Now, 15 years
on, there is a need for some sort of “closure” in the mental
capacity field.

Unfortunately, this is a particularly thorny piece of legislation
to get right. First, a wide group of people are affected, from
people who are incapacitated through illness or injury, to those
who are born with limited capacity. As a result, the bill will
directly affect people with dementia, mental illness, autism,
learning difficulties, brain injuries and anyone else who is –
temporarily or permanently – unable to make decisions for
themselves, as well as their families and professionals involved
with them.

Second, there are some very significant issues at stake. The bill
will have a huge effect not only on day-to-day decisions about what
to eat and when to have a shower, but also on decisions about
medical treatment, living arrangements, finances – and even whether
to refuse life-saving treatment. The furore about the issue of
living wills testifies to the importance of getting this particular
piece of legislation right (“Clash of wills”, page 30, 24
June).

The criticism centred on the first bill was predominantly, but not
exclusively, around the tone of the bill, which many argued was
overly focused on legislating to enable families and professionals
to make decisions for others, rather than on supporting and
empowering individuals to decide for themselves. The government
seems to have taken this criticism on board and the new bill is an
altogether different animal.

The first major change is in the first clause, which sets out some
general, and warmly welcomed, principles (see box). These
principles – in particular the emphasis on a presumption of
capacity – have dramatically changed the tone of the bill, to the
delight of many observers. Yet there are still serious
concerns.

One of the most contentious areas in the draft bill was the
allocation of a “general authority”. This had many people with
learning difficulties in paroxysms of fury, as it could have
allowed parents, carers or professionals to make unfettered
decisions about the most important and intimate aspects of their
lives. This general authority has been scrapped and replaced with
what campaigners say is a rather vague clause which, in theory,
limits their decisions to day-to-day issues. For bigger decisions,
such as where to live or whether to have medical treatment, the
bill proposes that someone would be granted power to make these
decisions through a new “lasting power of attorney”.

The Making Decisions Alliance (MDA), a coalition of nearly 40
organisations with an interest in the bill, is arguing that the new
clauses are not sufficiently defined and need tightening to ensure
that more significant decisions about health, finance and welfare
are taken by the right people and have appropriate
safeguards.

Another contentious area has been the bill’s provision for people
to make decisions in advance about whether to refuse medical
treatment. This is one aspect that has been hugely controversial –
not least because an advance refusal would potentially force
families and professionals to withhold treatment that would prevent
someone’s death.

But this is about far more than someone being allowed to die. Toby
Williamson is head of policy at the Mental Health Foundation, and
co-chair of the MDA. He says that the right to set out an “advance
decision” to refuse treatment is significant because many people
with mental health problems would choose to refuse some forms of
treatment in advance. He says: “This is a really important part of
the bill, and we’re delighted that the capacity bill looks likely
to become law before any new mental health act.

“There’s a disjuncture at present because the capacity bill allows
advance refusals, but these can be overridden by mental health law.
A valid, legally enforceable advance refusal of treatment would
mean that even if someone was very distressed, professionals would
have to take their expressed wishes into account.”

Williamson adds: “There’s a rather silly anomaly between Scottish
and English law – in Scotland, the advance statement is part of
their mental health bill, rather than their capacity bill. In
England, it is the other way round. So in Scotland you will have to
have mental health problems to be able to make an advance statement
– in England your advance statement can be overridden because
you’ve got mental health problems!”

But probably the major gripe – and the one area that the new bill
has made no headway on – is in the use of advocacy. Despite the
commitment on the front of the bill that “all practicable steps”
must be taken to help someone make a decision before they are
deemed incapable, the new bill proposes a draconian limit on access
to advocacy. An “independent consultee” – a new government term –
should be made available to very vulnerable people who are facing
“serious medical treatment” or who are facing significant changes
in accommodation provided by the NHS or local authorities. But,
crucially, these people will only be entitled to an independent
consultee if they don’t have any friends or family.

This has been roundly condemned by the MDA, learning difficulties
organisations and others as short-sighted, miserly and
counterproductive. Gavin Owen is policy and campaigns officer for
adults at the National Autistic Society. He says: “It’s very
restrictive, especially when you consider that these support
networks may often be where the conflict lies – or between the
professionals and these networks. An advocate would take the
principles of the bill and ensure that someone gets their wishes
respected. We welcome the bill but we’re pretty frustrated that
such a large piece of the jigsaw has been left out.”

One obvious reason for this oversight is the fact that the bill has
no money attached to it. Widespread advocacy arrangements are
likely to prove costly.

Ultimately the bill appears to be a vast improvement on both the
draft version and on the existing piecemeal common-law
arrangements. It still has to run the gauntlet of the parliamentary
process and some of the sticking points may yet be ironed out with
some concerted lobbying from the sector. But, as always, much of
the devil lies in the detail and the codes of practice which will
accompany the bill – and provide much of the practical detail –
have yet to be published. The civil servants responsible are in for
an interesting time.

– Making Decisions Alliance at www.makingdecisions.org.uk. 
More on the Mental Capacity Bill at www.dca.gov.uk/capacity/index.htm

New Bill’s principles

1 A person must be assumed to have capacity until established
otherwise.

2 “All practicable steps” must be taken to help someone make a
decision before deciding that they can’t.

3 Making an unwise decision is not to be taken as evidence that
someone lacks capacity.

4. All acts and decisions made for a person who lacks capacity
must be in their best interests.

5. All acts and decisions should be the least restricitive
alternative for that person’s rights and freedoms.