Free to choose?

Is
there a difference between long-term care and long-term caring for older
people? Claire Royston, a consultant psychiatrist, argues that there is, and
that it centres on our understanding of consent, capacity and autonomy.

Consent,
capacity and autonomy are inter-related concepts that should form the bedrock
of an approach to health care for older people that moves from the outdated
model of long-term care to a more patient-centred model of long-term caring.

At its worst, long-term care for older people
assumes that growing older inevitably reduces a person’s capacity to make
decisions, makes redundant the need for a person to consent to a recommendation
made by a "professional" and robs that person of their autonomy. This
often arises from well-intentioned professionals and families, and, sadly, at
times the "we know best approach" can also be driven by
professionals’ or family members’ self-interest, which can constitute, at its
extreme, elder abuse.

But a long-term caring model of health care
for older people is person-centred, based on the assessment of an individual’s
needs at a particular point in time, and matches these needs with appropriate
support and care. It recognises that the person should have the autonomy to
accept or decline the proposed care. Equally pertinent is that some illnesses,
for example dementia, will erode an individual’s capacity to make decisions and
ultimately therefore will compromise their autonomy.

Of course, autonomy is a complex concept to
define. In the context of health care, a good working definition of autonomy
is: "The ability to make informed choices, free of coercion, based on
one’s own personal beliefs and values." Its importance is underscored by
the Human Rights Act 1998, which summarises people’s rights and what they can
expect not to occur (see panel above).

To consider consent, capacity and autonomy in
the real world, I have given two examples (see panel below). In both cases
there are valid concerns about the risks. Dilemmas arise from the fact that
professionals and families seek to reduce these by recommending a move into
residential care. However, both Mrs A and Mr B say they want to stay in their
own homes. Consent, capacity and autonomy are critical elements in resolving
the dilemmas.

A key question is Mrs A and Mr B’s capacity
to decide where they wish to live. The first point to make is that
"capacity" is not an all-or-nothing phenomenon – you cannot simply
say that someone "lacks capacity". For each decision at a given point
in time, the capacity to make that decision needs to be determined, and the
level of capacity required depends on the gravity of the decision being made.
Second, it is presumed that all adults are capable of making a decision, so the
onus lies with the person raising doubt about the person’s capability to
demonstrate this. Third, incapacity may be temporary – for example, arising as
a consequence of a reversible illness.

So an assessment of capacity should include
all these three factors, and for an individual to be judged incapable it must
be shown that they cannot:

– Understand and retain the relevant
information.

– Believe the information.

– Weigh the information "in the
balance" to arrive at a decision.

In Mrs A’s case, her memory impairment made
it impossible for her to retain any of the information she was given about why
her family and the professionals were recommending a move into residential
care. She did not feel there was any problem with her being at home, saying
"I do all my cooking and cleaning myself", even though a recent
occupational therapy assessment revealed that she was no longer able to prepare
even a cup of tea. Nor did she recall that she was reliant on carers for her
meals and help with personal care.

But when Mr B discussed the recommendation
with his GP, it was obvious that he had a clear appreciation of the risks he
placed himself in by staying in his own home, and that "stage two" of
the test – believing the information – was also not an issue. He was able to
give a reasoned and balanced account of the process by which he had come to his
decision. He knew he was dying and wished to remain at home where he had many
happy memories. In addition, he had established that he would not be able to
take his dog into a home, which was an important consideration.

Then there is consent – "the voluntary
and continuing permission to follow a recommendation based on an adequate
knowledge of the issue and any alternative possibilities".

In practice, questions are most frequently
asked about an individual’s capacity to give consent when they make an
unexpected decision that is contrary to the recommendation of professionals or
family. In Mr B’s case, he has been judged to be capable of not consenting to a
move. While at risk, he has competently refused an intervention and elected to
remain at risk.

But Mrs A was judged to be incapable of
making this decision, and this is where the doctrine of Best Interest is
relevant. This means that the professionals and family will make a decision on
her behalf that is in her best interests. The decision made should accord with
accepted practice and take into account the patient’s previously expressed
wishes, if they are known, and should incorporate the opinion of family or
friends who know the person well. Here, a case conference concluded that
nothing could be added to her community support package and that she remained
at high risk of self-neglect and harm. Consequently it was in her best
interests to move into a residential home.

This illustrates the importance of the
precious human freedom known as autonomy – an important step in moving towards
a health care system based on long-term caring, not just long-term care.

Human rights act 1998

Right
to:

–
Life, liberty, fair trial

–
Respect for private life

–
Freedom of thought

–
Religious expression

–
Assembly

–
Marry

Prohibition
of:

–
Torture

–
Slavery

–
Unlawful punishment

–
Discrimination

–
Abuse of rights

Examples

–
Mrs A

She
has Alzheimer’s disease. She was widowed four years ago and her only daughter
lives 50 miles away. Her daughter and the carers who visit four times each day
are increasingly concerned about Mrs A’s safety at home. In recent weeks she
has been locked out of the house many times, both during the day and at night.
She is losing weight and looks very tired. She cries and begs the carers to
stay with her each time they visit. When the social worker saw her last week,
she said: "I have to stay at home and make dinner for my parents. That is
my job."

–
Mr B

He
has a severe chronic obstructive airway disease and requires oxygen on an
hourly basis. He has lived alone since his mother died 10 years previously. He
had taken early retirement to care for her and lost touch with friends and
other family during the two years of her terminal illness. He is unable to
leave home and only has contact with the carers who call twice a day to assist
with meal preparation and housework. His neighbour calls most days to have a cup
of tea and take Mr B’s much-loved dog for a walk. His condition is
deteriorating and his GP wants him to move into a nursing home.

Dr
Claire Royston is consultant in old age psychiatry at Cambridgeshire and
Peterborough Mental Health Partnership NHS Trust. She is speaking at the Royal
Society of Medicine’s conference From Long-Term Care to Long Term Caring on 25
June. Contact 020 7290 2984 for further details.