New inquiry on ethics and dementia
Tue, 18 December 2007
The Nuffield Council on Bioethics has launched a new inquiry on the ethical issues raised by dementia. In particular, the Council will be looking at how decisions are made for or with people with dementia and the type of care they receive.
Dementia is diminished brain function caused by diseases such as Alzheimer’s and vascular dementia. The UK’s ageing population means that increasing numbers of people, their families, healthcare staff and carers are having to deal with the difficulties that these conditions can cause. At the same time, developments in neuroscience are increasing our understanding of these conditions and helping us to provide better treatment and care. The Nuffield Council has set up an expert working group, chaired by Tony Hope, Professor of Medical Ethics at the University of Oxford, to examine the issues that arise in this area.
“When decisions need to be made about treatment or day-to-day living, there can be differences of opinion about what is in the person’s best interests, what they want now, and what they might have wanted before they developed dementia,” said Professor Hope. “We hope to offer some guidance for families, carers and professionals.”
The group will also be discussing how dementia care is provided and the standards of care currently available. Services for people with dementia have been severely criticised in the recent past.
Further issues that the group will consider include:
- the role of advance decisions or ‘living wills’ which set out what treatment you would like to have, or not have, at a point in the future when you are unable to make decisions for yourself;
- whether it is acceptable to restrict a person’s freedom for their own safety, for example by locking doors, or deceive them for their own good, for example by disguising medication in food;
- whether and how people with dementia should be involved in research;
- how conflicts between the interests of the individual and their carers can be resolved, for example where a husband benefits from his wife’s care, but she can no longer cope;
- the implications of changes in behaviour for the individual and for their relationships with other people.
The group will be seeking the views of people with dementia, carers, health professionals, policy makers, and other members of the public on these issues during spring and summer 2008. A report with conclusions and recommendations will be published in mid-2009.
Notes for Editors
For further information:
Catherine Joynson
Communications & External Affairs Manager
Nuffield Council on Bioethics
28 Bedford Square
London WC1B 3JS
Tel: +44 (0)20 7681 9619
Mob: +44 (0)7747 635863
Email: cjoynson@nuffieldbioethics.org
Web: www.nuffieldbioethics.org
Working Party members
Professor Tony Hope
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
Neuropsychologist and nurse working with people with Alzheimer’s and their carers
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
Terms of Reference
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:
1 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;
2 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.
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.
Last Updated Tue, 18 December 2007