“Issues about access to medication have recently hit the headlines, but there are other important questions that urgently need to be addressed to help people with dementia and their families live their lives,” said Professor Tony Hope, chair of the Council’s Working Party on dementia. “We want to hear people’s views on these questions to help us develop some guidance and advice for families, carers and professionals.”
The Council would like people to consider a range of questions, including:
• How can carers, families and
doctors weigh up what treatment and care a person would have
wanted before they developed dementia, and what they appear to
want now?
• Are ‘living wills’ an effective way of making decisions about
treatment and care before the capacity to make a decision is
lost?
• Is it ever right to restrain a person with dementia, for
example, to reduce the risks of wandering?
• It is ever right to deceive a person with dementia, for
example, by disguising medication in food?
• Should people with dementia be involved in research if they
are no longer able to choose for themselves whether or not to
participate?
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“Although the law offers guidance on how decisions for people with dementia should be made, it is often more complicated in real life,” said Dr Rhona Knight, a GP and member of the Working Party. “For example, taking account of someone’s ‘past and present wishes and values’, as stated in the Mental Capacity Act, can be difficult if these appear to be vastly different.”
Dementia is a degenerative condition characterised by a number of signs and symptoms, such as memory problems, mood changes and communication difficulties. It is estimated that around 700,000 people in the UK have dementia. As the population ages, the number of individuals living with dementia in the UK could more than double to 1.7 million by 2051. In addition, carers themselves may be vulnerable: around 68% of carers of people with dementia are over 65 and 12% are over 80.
Advance decisions or ‘living wills’ set out what treatment people would wish to accept, or refuse, at a point in the future when they are unable to make decisions for themselves. For example, someone might state that if they develop dementia and are no longer able to recognise their close relatives, then they would not wish to be given life-extending treatments. Some believe that everyone should make advance directives to cover future possible situations. Others are sceptical that people are able to fully imagine how they will feel if they develop dementia, and therefore predict the kinds of decisions they would make in that situation.
The arguments against restraining people with dementia are powerful: it overrides their personal freedom, not only preventing them from doing what they wish to do, but perhaps also using force to achieve this. Yet, at times, it might seem the best option, whether in order to protect the health and safety of the individual concerned, to promote their overall best interests, or to protect others.
We normally take it for granted that we should tell people the truth. The Council is asking whether there is anything about dementia that changes that duty. Telling the truth can sometimes lead to unnecessary distress, for example, repeatedly telling someone that their husband has died when they keep asking where he is. On the other hand, if a person’s grip on reality is weak, routinely failing to tell the truth may undermine that grip even further. Other kinds of deception also raise strong feelings. For example, hiding medication in food might be the only way to get a person to take it, but many believe this to be unacceptable.
The Council would also like to hear people’s views on whether people with dementia should be given experimental treatments as part of a research project if they are no longer able to make decisions for themselves. Some argue that this should never happen, while others believe that this is acceptable if the person expressed a desire to participate in research in the past. Generally in the UK, a third party, such as a family member or a doctor not involved in the research, is asked to weigh up the risks and benefits to the individual and make the decision on their behalf.
The Nuffield Council on Bioethics established a Working Party to examine the ethical issues surrounding dementia in November 2007. The group includes members with expertise in medicine, nursing, neuroscience, law, sociology and philosophy, and members representing people with dementia and carers. To inform its deliberations, the Working Party would like to hear the views of people with dementia, carers, those working in health and social care, policy makers, academics, researchers and members of the public. The closing date for responses is 31st July 2008. A report setting out the group’s findings will be published in autumn 2009.
The consultation paper is available on http://www.nuffieldbioethics.org/go/ourwork/dementia/page_922.html
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