Patients, carers, and families affected by dementia and health professionals are being asked to contribute to a consultation on the ethical dilemmas of managing the disease.
The Nuffield Council on Bioethics, a UK independent body that examines ethical issues raised by new developments in biology and medicine, has launched the consultation this week to gather the views and experiences of people who face the challenges of dementia. Its aim is to develop recommendations to support people in the decisions they make every day.
“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 Tony Hope, who chairs 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 working party, which was set up in November 2007, is seeking views on how carers, families, and doctors weigh up what treatment and care a person would have wanted before they developed dementia and what they seem to want now.
Some people believe that everyone should make advance directives or living wills to set out what treatment they would like if they become unable to make decisions for themselves. For example, they might not wish to accept treatments that extend their life. However, others are sceptical that people are able to fully imagine how they will feel if they develop dementia and therefore whether they can predict the kinds of decisions they would make in that situation.
The working party is also asking whether it is ever right to restrain a person with dementia, for example to reduce the risks of wandering, and whether it is ever right to deceive a person with dementia, such as by disguising drugs in food.
“Although the law offers guidance on how decisions for people with dementia should be made, it is often more complicated in real life,” said 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.”
Currently an estimated 700 000 people in the United Kingdom have dementia, although the number is predicted to more than double by 2051 to 1.7 million.
The consultation paper also asks whether it is ethical to collude with someone with dementia by concealing the truth so as to avoid distressing them, for example by agreeing that their dead spouse is still alive. It also raises the issue of how far carers and nursing home staff should go to reduce the risks that people with dementia face.
Dr Knight gave the example of whether a woman who previously enjoyed cooking should be kept from the kitchen because of the dangers it might pose.
“Attempts to remove all hazards of daily life may mean that there is very little in the person’s life which is worthwhile,” she said.
The consultation runs until the end of July, and a report setting out the group’s findings will be published in autumn 2009.
Details of the consultation on dementia are at www.nuffieldbioethics.org.