Decision Time

Toast or cereal? Car or bus? EastEnders or Corrie? Just think how
many decisions you make each day. Few are life-defining, but just
being able to make a simple choice helps us to live the way we
want.

Yet too many people, particularly those with learning difficulties,
mental health problems and dementia, are denied the chance to make
decisions on even the minutiae of their day-to-day living, let
alone more complex issues.

With the implementation of the Mental Capacity Act 2005, however,
such a dismissive attitude towards vulnerable people may be set to
change. Historically it has often been assumed that people with
certain conditions are unable to make any decisions – consequently
little time or patience has been dedicated to find out if this is
really the case. However, the new mental capacity legislation
starts from the opposite premise: that every adult should be
presumed able to make their own decisions unless it can be proven
otherwise.

To judge objectively whether an individual has the capacity to make
a decision, the act sets out a clear test. A person can only be
deemed unable to make a decision if they are unable to understand
and retain the relevant information, unable to use that information
as part of the decision-making process and unable to communicate
what they have decided.

Crucially, the legislation is clear that even if a person cannot
understand the information when it is presented in a conventional
way, as long as it can be understood in a different format – such
as through visual aids – they must not be judged as lacking the
capacity to make a decision. Likewise, even if a person is only
able to retain the information for a short period, this should not
prevent them making decisions.

Of course there will always be situations where individuals are
unable to make their own choices. In these cases, every effort must
be made to ensure that any decision is in their best interests. The
act sets out a clear checklist of factors to be worked through,
which includes the person’s past and present wishes and
feelings.

For all its aspirations, the success of the act will depend on how
it is implemented. The roles of health and social care
practitioners will be instrumental. So what will this piece of
legislation mean for them?

Until the government has produced the codes of practice setting out
how the act should work – the draft codes are being rewritten – the
finer details will not be apparent. It is obvious, though, that the
legislation could have a significant impact on a wider level for
health and social care practitioners.

“They will need to take a more value-based approach to their work,
starting with the presumption that people can make decisions. This
could mean a cultural shift,” says Richard Kramer, co-chair of the
Making Decisions Alliance, a coalition of organisations that has
been campaigning for mental capacity legislation.

“Some health and social care staff are already fulfilling the
principles and spirit of the legislation. But for others the act
will affect the day-to-day support they give to people. Some health
professionals particularly may need to shift their
attitudes.”

The act states that a person cannot be presumed to lack capacity
purely on the basis of their age or appearance, or because of
behaviour that could cause “unjustified assumptions”.

“This gives a clear message to decision-makers that they can’t make
judgements based on subjective views about quality of life,” says
Kramer.

To help ensure that vulnerable people can make their voices heard,
the legislation introduces independent mental capacity advocates.
The relationship between health and social care professionals and
advocates is often a fractious one but, in light of the act, both
sides are going to have to grow more accustomed to one
another.

Rick Henderson, director of Action for Advocacy, an organisation
that represents advocacy schemes, says: “Health and social care
professionals will have to work more often with advocates who will
have more of a visible presence. But decent workers will be used to
having advocates around and working in a person-centred way.”

He recalls a case when he was an advocate for an older man who
needed to be discharged from hospital. The man’s social worker
wanted to put him in a care home but his relatives – estranged for
several years – wanted him to live with them.

Henderson says: “The social worker wanted me to advise him on the
best course of action. My role wasn’t to advise social services but
to imagine myself in the shoes of the elderly gentleman and get
some sense of what he would have said if he could speak.”
But he was called in too late, and the man died before he was
discharged.

“I was given just 48 hours to figure out what this guy wanted,”
Henderson says. “I hope the Mental Capacity Act will make it clear
that I could have been brought in much earlier.”

Even though there are about 1,000 advocacy schemes in England and
Wales, provision is patchy. Not all health and social care
professionals are comfortable with – or fully understand – the role
of advocates, so an education programme will be vital. And many
will have taken issue with the government’s insinuation that they
are not already working in a way that reflects the ethos of the
act.

Moreover, not everyone agrees that legislation alone will achieve
either best practice or the necessary cultural changes. Learning
difficulties organisation People First says the act is open to
individual interpretation.

For director Andrew Lee, it spells a need for professionals to go
back to basics. “Whether it’s a doctor, teacher or social worker,
their training needs to be done by people with learning
difficulties using real-life examples. Then the professional will
have meaningful training to fall back on.”

The problem is not so much a question of people’s voices being
ignored, he adds. “It’s the fact that the decisions they do make
are not being respected. Whether a person without learning
difficulties agrees or disagrees they should have to respect the
view of the person with learning difficulties. Other people learn
from their mistakes so why should people with learning difficulties
be any different?”

It is hoped that the Mental Capacity Act will help to ensure that
this “professional knows best” attitude is no longer the favoured
option. Decisions will be open to more intense scrutiny and
professionals will need to be aware that disputes could end up in
the new Court of Protection, which will deal with the legislation.

The act comes into force in 2007 but changes need to start soon.
Changing mindsets takes time but it’s not a matter over which
professionals have any choice. The only decision they have to make
is when to begin their new way of thinking.