Dementia: ethical issues

People have the legal right to make their own decisions about things such as what medical treatment to accept or where to live, as long as they are capable of doing so. This applies to people with dementia too. As dementia progresses, however, it can get harder for people to make their own decisions.

What is the law?

The Mental Capacity Act 2005 (covering England and Wales) and the Adults with Incapacity (Scotland) Act 2000 set out how a decision can be made if a person is not able to make a particular decision for themselves. A similar Act has been promised for Northern Ireland. Detailed Codes of Practice provide extra information on how the Acts should work in practice.

The law says that it must always be assumed that someone can make their own decisions, until it is shown that they can’t. Where decisions are made for people who lack capacity, such decisions must be in the person’s ‘best interests’ (England, Wales and Northern Ireland) or have the potential to ‘benefit’ the person (Scotland).

In general, these Acts have been welcomed by those working in the field of dementia. There are a number of areas, however, where extra guidance on how the Acts should work in practice would be helpful.

Support for making decisions

People with dementia should be supported to help them take part in decisions as much as possible. If they can’t make a decision entirely on their own, then they may still be able to make decisions jointly with trusted family or friends.

We conclude

The Codes of Practice made under the Mental Capacity Act and the Adults with Incapacity (Scotland) Act should emphasise the importance of good communication and supportive relationships with families, so that joint decision making is encouraged wherever appropriate.

Working out ‘best interests’ or ‘benefit’

When deciding on the right thing to do, both the past wishes and feelings of the person and their wishes and feelings now must be taken into account. However, sometimes past and present wishes may be quite different.

We conclude

Both past and present wishes are an expression of a person’s autonomy.

Extra guidance should be provided in the mental capacity Codes of Practice on how past and present wishes and preferences should be taken into account where these appear to conflict. This guidance should emphasise that neither past nor present can automatically take precedence. 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

People who can still make their own decisions sometimes write ‘advance decisions’ (also called ‘advance directives’ or ‘living wills’) to say what kind of care or treatment they want in the future when they are no longer able to decide for themselves. Advance decisions to refuse treatment are legally binding, as long as they have been properly made.

Some people see advance decisions as a good way of making sure their wishes are followed in the future. Others believe that we can never ‘second-guess’ what we will want in the future, and that an advance decision may lead to bad care.

In end of life care, the term ‘advance care planning’ is used for a much broader approach to planning for the future. As well as the kind of medical treatment the person would want, or not want, an advance care plan may include their wishes about where they would like to be as they are dying, their particular likes and dislikes, and who they would most want to be with them.

We conclude

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 welcome recent guidance that provides a model advance refusal form and suggests a number of helpful safeguards.

Where individuals wish to make decisions about their future care, we suggest this is best achieved in the broader context of advance care planning. Such planning should begin early and be regularly reviewed.

Proxy decision-making: welfare attorneys

People who are still able to make their own decisions may choose someone they trust to make decisions for them in the future. The person chosen is known as a ‘welfare attorney’. The welfare attorney must always act in the best interests of the person with dementia when making decisions.

Welfare attorneys have many advantages over advance decisions, as they have up-to-date information about the decision to be made. However, there are concerns that some people may find it too expensive or complicated to nominate a welfare attorney.

We conclude

In principle, the process of appointing a welfare attorney should be free of charge for everyone, as they represent a ‘social good’. At the least, people with dementia should have support in nominating a welfare attorney if they wish to do so.

There will be times when doctors disagree with the welfare attorney over the best interests of the person with dementia. Such disputes can be referred to court. However, there is little guidance for doctors as to what level of concern should trigger this process.

We conclude

More guidance is needed about when it is appropriate for professionals to challenge the decision of a welfare attorney in court. Significant weight should be placed on the fact that the welfare attorney was previously chosen and trusted by the person about whom the decision is being made.