Caring for people with dementia: are we being ethical?

The Nuffield Council on Bioethics today launched a consultation on the ethical dilemmas that are faced by people with dementia and those who care for them, including families, carers, and health and social care professionals. “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?

“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.

NOTES TO EDITORS

1. For further information contact Catherine Joynson Communications & External Affairs Manager Nuffield Council on Bioethics 28 Bedford Square London WC1B 3JS Tel: +44 (0)20 76819619 Mob: +44 (0)7747 635863 Fax: +44 (0)20 7637 1712 Email: cjoynson@nuffieldbioethics.org Web: www.nuffieldbioethics.org 2. Consultation paper A consultation paper, which provides background information and asks a number of questions for respondents to consider, will be available on the Council’s website on 14th May 2008. Advance copies are available to journalists on request. A large print version is also available. 3. Working Party members Professor Tony Hope (Chair) Professor of Medical Ethics, University of Oxford Professor Janet Askham Director of Research, Picker Institute Mary Baker MBE President, European Federation of Neurological Associations Harry Cayton Chief executive of the Council for Healthcare Regulatory Excellence, former National Director for Patients and the Public at the Department of Health and former Chief Executive of the Alzheimer’s Society Chris Chaloner Ethics Advisor, Royal College of Nursing Dr Jim Eccles Consultant Physician, The Leeds Teaching Hospitals NHS Trust Dr Julian Hughes Consultant in Old Age Psychiatry, Northumbria Healthcare NHS Foundation Trust Dr Rhona Knight General Practitioner and Council member Dr Gemma Jones Educator/consultant on dementia care and design issues related to dementia care; Chair, Alzheimer Café UK Dr John McMillan Senior Lecturer in medical ethics, The Hull York Medical School Professor Jill Peay Professor of Law, London School of Economics Professor Hugh Perry Professor of Experimental Neuropathology, University of Southampton & Council member Professor Ruud Ter Meulen Professor of Ethics in Medicine, University of Bristol Dr David Wilkinson Consultant in Old Age Psychiatry, Moorgreen and Western Community Hospitals, Southampton 4. The Nuffield Council on Bioethics The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics. For further information see: www.nuffieldbioethics.org 5. Terms of Reference of the Working Party In the light of the increasing prevalence of dementia and other neurodegenerative conditions in the UK, and of developments in neuroscience which provide a better understanding of these conditions and of the care and treatment that can be provided to those suffering from them, the Working Party will: Identify and consider the ethical, legal, economic and social issues including issues of social responsibility that arise in the care and treatment of those with chronic, progressive neurodegenerative diseases of the central nervous system; Examine ethical issues affecting patients, carers, families, healthcare providers, social services and society, in particular those surrounding: (a) decision-making and capacity to consent; (b) respect for the autonomy of both the individual and their family/carers; (c) ‘best interests’ and ‘quality of life’ of both the individual and their family/carers; (d) the implications of the changes that affect the behaviour of people with dementia. 3. Consider the legal, policy and educational implications of these ethical issues for the care and support of patients and their families taking account of different cultural and social contexts, including: (a) the implications of an 'advance directive' or 'living will' in relation to palliative care and end-of-life issues, produced before, or after diagnosis; (b) the adequacy of care and support for patients and their families.