When 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 legislation.

Making decisions

Joint decision making

The 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.

Past and present wishes

When 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 precedence.

We 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.

Advance decisions and advance care planning

The 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.

In 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.

Welfare attorneys

Lasting 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.

There 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.

Using restraint

Being 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.

Carers, 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.

Regulations 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.

Confidentiality

The 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.

We 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

Dementia 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.

Service 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 of dementia.

In 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.

Jill 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