the Nuffield Council on Bioethics began an inquiry into the ethical
issues arising in the context of dementia it was clear that a number
of problematic legal issues would also be raised. Whilst the Mental
Capacity Act 2005 has been widely welcomed by those working in the
field, it was evident that areas remained where extra guidance would
be helpful, particularly for those working day-to-day in caring
for people with dementia.
The Council set up a Working Party, chaired by Professor Tony Hope,
Professor of Medical Ethics at the University of Oxford, in 2007.
The Working Party, of which I was a member, included medical experts
in dementia, but also drew on other relevant expertise, so as to
consider the ethical, legal and social issues. To inform our deliberations
we held a public consultation and spoke to people with direct experience
of living with dementia and those working in the field. The response
the Council received from the public during this process was unprecedented,
confirming our view that dementia is an issue that causes real ethical
dilemmas for those involved in care. The Working Party’s conclusions
were published on 1st October 2009 in the report Dementia: ethical
issues. The report makes policy recommendations in a number of areas,
including diagnosis, access to care, tackling stigma, and providing
support for carers. This brief article summarises the Council’s
conclusions in relation to mental capacity and disability discrimination
Mental Capacity Act (MCA) sets out how a decision can be made if
a person is not able to make that particular decision for themselves.
It must, however, always be assumed that a person does have capacity
to make a decision, until it is shown that they can’t. In
many cases it will be clear whether a person with dementia does
or does not have the capacity to make a particular decision. However,
there will be times when the person’s ability to make a particular
decision will be difficult to determine. The implications of this
are significant: for if people are assessed as having capacity they
will be free to choose their own course of action, whereas if they
are assessed as lacking capacity they become subject to the MCA
and decisions will be made for them, albeit those decisions must
be considered to be in their best interests.
Problems, of course, remain with the issue of borderline capacity.
To avoid, or at least reduce, these the Working Party concluded
that greater emphasis should be put on joint decision making with
trusted family members. In practice, few of us make decisions without
consulting others or seeking out relevant information. In this sense
‘autonomous’ decision-making is rarely done in isolation:
decisions are supported by those close to us and in the light of
those relationships. And the MCA recognises this insofar as it requires
both consultation with others, and that everything should be done
by way of assistance to enable individuals to take their own decisions.
Our report recommended that the Code of Practice made under the
MCA should be amended to emphasise the importance of good communication
and supportive relationships with families, so that joint decision-making
is encouraged wherever appropriate.
and present wishes
deciding what course of action is in a person’s ‘best
interests’, both their past wishes and feelings and their
wishes and feelings now must be taken into account. However, sometimes
past and present wishes may be quite different. Both are an expression
of a person’s autonomy and neither can automatically take
concluded extra guidance was needed in the Code of Practice on how
past and present wishes and preferences should be taken into account
where these appear to conflict. The relative strength of the person’s
wishes, the degree of importance of the decision, and the amount
of distress being caused should all be important factors to consider.
decisions and advance care planning
MCA makes specific provision for people to make ‘advance decisions’
to refuse treatment, even if that treatment may be life-saving.
It is right for the law to allow people to make an advance decision
to refuse treatment if they wish to do so. However, an advance refusal
of treatment may not always work in the way the person expected.
We therefore welcomed the recent NHS guidance that provides a model
advance refusal form and suggests a number of helpful safeguards.
We were also concerned about the uncertain legal position that could
arise where a person acted inconsistently with their advance decision
once capacity had been lost: we recommended that the Department
of Health act urgently to clarify this with additional guidance
in the Code of Practice.
end of life care, the term ‘advance care planning’ is
used for a broader approach to future planning. As well as the kind
of medical treatment the person would want, or not want, an advance
care plan may include their wishes about particular likes and dislikes,
where they would like to be when they are dying, and who they would
most want to be with them. Where individuals wish to make such decisions
about their future care, we suggest this is best achieved with early
planning and that such plans should be reviewed regularly.
powers of attorney enable people to choose others to act on their
behalf either in respect of their property and financial affairs
or in relation to their health and welfare. The report acknowledged
the advantages of individuals appointing someone to make decisions
about their future care, since such arrangements can be sufficiently
flexible to take account of changing circumstances, something that
an advance refusal of treatment might find problematic. Appointing
a welfare attorney can be a good way for people to plan for a time
in the future when they cannot make decisions themselves, and a
way in which autonomy can be enhanced.
are concerns, however, that some people may find it too expensive
or complicated to nominate a welfare attorney. In principle, we
believed that the process of appointing a welfare attorney should
be free of charge, and that where people are first diagnosed with
dementia, there should be a mechanism actively to support them in
nominating a welfare attorney if they wish so to do. We also recommended
that the Office of the Public Guardian should be monitoring whether
the current practical arrangements are hindering those who might
otherwise wish to appoint such an attorney.
restrained in the absence of consent can be distressing and demeaning:
and restraint can come in a number of forms, including the use of
medicines and ‘innovative’ strategies such as leaving
a person in a low seat that they cannot get out of without help.
Whilst it may be legal for a person to be restrained if this would
prevent harm either to the person or others, such restraint needs
to be a proportionate response to the harm envisaged, and there
is insufficient guidance in England and Wales on what would constitute
a proportionate response.
in particular, may find that a lack of outside help can leave them
little choice but to restrain the person for whom they care, in
order to get on with essential household tasks. This can cause anxiety
to both the carer and the person with dementia, an anxiety that
might be allayed were better guidance available. We recommended
that the Office of the Public Guardian work together with the Department
of Health to produce such guidance; and that the UK Health Departments
generally should draw attention to the importance of providing support
to carers to obviate the need for the use of restraint.
governing restraint in care homes make clear that it is only to
be used on an exceptional basis. The Mental Welfare Commission for
Scotland has issued detailed practical guidance on what this ‘last
resort’ use of restraint might entail and we recommended that
such advice be made available to all those working in care homes,
particularly since the evidence suggests that restraint is widely
used in practice.
MCA Code of Practice stipulates that health and social care staff
should only disclose information about somebody who lacks capacity
if it is in the best interests of the person concerned to do so.
The Code of Practice also suggests that carers should not normally
need to receive such information from professionals as they will
already have their own knowledge of the person to guide their decisions.
The Code therefore appears to place an emphasis on withholding information,
rather than sharing it, and fails to focus on why carers could need
information. In contrast, the Scottish Code of Practice for professionals
simply notes that it will be necessary to consider the adult’s
right to confidentiality and any previously expressed wishes about
disclosure of information, reflecting a more nuanced approach.
think that the guidance in the MCA Code of Practice on when it will
be in a person’s best interests to share information is too
restrictive. We recommended that the requisite professional bodies
should reconsider this guidance and give greater weight to the legitimate
reasons why sharing may be necessary to enable carers properly to
care for their loved ones.
Including people with dementia in society
still carries a stigma. We heard one person describe having dementia
as being ‘like a non-person’. Dementia needs to become
an accepted, visible part of our society, and people with dementia
should be enabled to take part in the activities they enjoy.
providers such as shops, leisure facilities and restaurants have
a legal duty under the Disability Discrimination Act 1995 to make
‘reasonable adjustments’ to enable people with dementia
to use their services. Often they may not realise this. Moreover,
under the amendments made to the Act in 2005, public bodies, such
as the NHS and local authorities, have a general duty to promote
equality of opportunity between disabled and other persons. We recommended
that the Equality and Human Rights Commission should highlight these
legal duties to ensure people with dementia are not subject to unjustifiable
discrimination. Indeed, relatively minor adjustments could do much
to make services more accessible to people with dementia, such as
clearer signage, strong lighting, and an increase in staff awareness
conclusion, law and ethics manifestly intersect in the area of dementia
care. Yet greater clarification of how the law should be applied
by those who juggle with the day-to-day dilemmas entailed in such
care could both alleviate carers’ anxieties and promote autonomous
decision-making by those with dementia.
Peay was a member of the Nuffield Council on Bioethics’ Working
Party on dementia.For more information and the Council’s conclusions
in full, see: www.nuffieldbioethics.org/dementia
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