Launch of the report
Dementia: ethical issues
1 October 2009
Introduction
Professor Albert Weale FBA
Chair, Nuffield Council on Bioethics
The Nuffield Council on Bioethics
• Established in 1991
• Independent body that examines ethical questions raised by advances in biology and medicine
• Contributes to policy making and stimulates debate
Dementia: ethical issuesThe report
The report contains a number of conclusions and recommendations to policy makers in the following areas:
• ethical approaches to dementia care• tackling dilemmas in day-to-day care• decision making • stigma and including people with
dementia in society • recognising the needs of family
carers • research priorities and participation
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issuesIntroduction and ethical framework
Professor Tony HopeChair of the Working Party on dementia and
Professor of Medical Ethics, University of Oxford
The Working Party
• Began work in November 2007• Members included those with expertise in
medical ethics, front line care for people with dementia, law, old age psychiatry and neuroscience
• Public consultation in July 2008 received over 200 responses
• Deliberative workshop for 50 members of the public held in Birmingham
What is dementia?
Dementia is a disorder in which people experience a progressive decline in their mental ability because of damage to the brain
• 700,000 people in the UK have dementia• This could rise to 1.7 million by 2051• One in five people will develop dementia by the
age of 85• Dementia costs the UK more than £17 billion
each year
An ethical framework for dementia
Six ‘components’• A methodology for approaching ethical
decisions• Two beliefs about the nature of dementia• A set of interlinked ethical values
An ethical framework: Component 1
A ‘case-based’ approach to ethical decisions• Identify the relevant facts• Interpret and apply appropriate ethical
values• Compare the situation with other similar
situations
An ethical framework: Components 2 & 3
Two beliefs about the nature of dementia• Dementia arises as a result of a brain
disorder, and is harmful to the individual• With good care and support, people with
dementia can expect to have a good quality of life – you can ‘live well’ with dementia
An ethical framework: Component 4
1. Promoting autonomy
Autonomy is not just about ‘rational choice’ – it includes supporting important relationships, and supporting the person in expressing their values
2. Promoting well-being
Well-being includes moment-to-moment experiences of contentment, and also objective factors such as a person’s level of mental ability
Promoting the interests of the person with dementia and those who care for them
An ethical framework: Component 5
Acting in accordance with solidarity• The belief that people with dementia are
fellow citizens and that we are all ‘fellow-travellers’
• Recognition of our mutual interdependence• Duty to support people with dementia and
to support carers in their own exercise of solidarity
An ethical framework: Component 6
Recognising the personhood of the person
with dementia• A person with dementia is the ‘same’
person, despite changes in mood and behaviour
• A person with dementia is of equal value to a person without dementia
Our view
Those who support and care for people with dementia need more support in tackling the ethical problems they meet every day
We conclude there is a need for:
Education – to help respond to dilemmas
Forums – to share and receive support
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issues
Ethical approaches to care
Dr Rhona Knight FRCGP
General Practitioner and member of the Nuffield Council on Bioethics
What is ethical care?
• Recognises the value of the person with dementia
• Aims to promote the well-being and autonomy of the person with dementia
• Pays attention to the interests of carers who provide day-to-day support
We conclude:
1. How things are done, will often be more important than the structure of services
2. Professionals and care workers should treat families as ‘partners in care’
What is ethical care?
20
• Diagnosis• Information, communication, signposting• Ongoing care and support• Acute hospital services• End of life palliative care
What is ethical care?
Diagnosis
• A timely diagnosis - for person and family
• Good quality assessment and support- from initial concern
• Research needed on why some cultural groups appear hesitant in coming forward
• Encouragement to share information
Information, communication and signposting
Need for• Appropriate information • Practical support • Emotional support
• Access to services• Dementia care advisor pilot
Ongoing care and support
• Flexibility to individual needs
• Importance of developing relationships with care workers
• Importance of care for the ‘small things’
• Treating the person with dementia with dignity
Acute Hospital Services
• Often different needs
• Avoidance of unnecessary distress
• Examples of good practice
End of life palliative care
• Palliative, supportive and person centered care
• Less likely to receive good quality palliative• Need for appropriate services• Lots of development nationally
We conclude
We welcome the commitment in the English Dementia Strategy to develop and evaluate such models
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issues
Dementia and society
Professor Ruud ter Meulen
Professor of Ethics in Medicine,
University of Bristol
Combating stigma
• People with dementia may feel devalued and/or excluded from mainstream society
• Our ethical framework emphasises the importance of equality for people with dementia
• Information and awareness campaigns are only one part of the story – dementia must become an accepted, visible part of our society
Promoting inclusion
People with dementia need to feel comfortable carrying on with their usual activities, for example:
going to a club or out to lunchparticipating in church activities taking part in voluntary work involvement in dancing, art and music
Promoting inclusion• Shops, restaurants and leisure facilities have a
legal duty to enable people with dementia to use their services
• However, they will often not realise this and even if they do, they are unlikely to have sufficient knowledge of dementia to make appropriate adjustments
We recommend
The Equality and Human Rights Commission should provide practical guidance on how to enable people with dementia to access services
Role of society in providing care
Current care system
Health care Social care
Care for people with
dementia
• Many services required by people with dementia are classed as ‘social’ services
• Funding arrangements in social care often mean that only ‘crisis’ cases receive appropriate care
Role of society in providing care
• Component 2 of the ethical framework:
“Dementia arises as a result of a brain disorder, and is harmful to the individual”
• People with dementia should therefore have access to the care they need on the same basis as people with conditions such as cancer
We conclude
The availability of services needed by people with dementia should not be determined by classifications of care
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issues
Research priorities
Professor Hugh Perry FMedSci
Professor of Experimental Neuropathy, University of Southampton and member
of the Nuffield Council on Bioethics
Combined research funding 2007-08
£ (million)
0 100 200 300
Cancer
Dementia
Source: House of Commons Hansard 16/12/08
Research papers published since 2002
Source: Knapp M and Prince M (2007) Dementia UK (London: Alzheimer’s Society), pxv.
0 5 10 15 20 25
Cancer
CardiovascularDisease
Dementia
% of research papers
Funding
We conclude • Major funders should explain more clearly
how and why they divide their research funds between areas of research
• More support and encouragement is needed for researchers who carry out high-quality research in dementia
Funding allocation within dementia research
We encourage more research into:
• The experience of living with dementia
• How people with dementia can be supported to live the best possible lives
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issues
Making decisions
Professor Jill Peay
Professor of Law,
London School of Economics
What is the law?
• People have the legal right to make their own decisions about health care and general welfare
• As dementia progresses, it can get harder for people to make their own decisions
• Decisions for people who lack capacity must:
- be in the person’s ‘best interests’ (England and Wales)
- have the potential to ‘benefit’ the person (Scotland)
Support for making decisions
Most people do not make important decisions in isolation
We recommend
Codes of Practice on mental capacity should be amended to emphasisegood communication supportive relationships joint decision making
Determining ‘best interests’ or ‘benefit’
• Past and present wishes of a person with dementia may sometimes conflict
• Neither past nor present wishes can automatically take precedence
• Important factors include: – the relative strength of the person’s wishes– the degree of importance of the decision – the amount of distress being caused
We conclude
Extra guidance is needed on balancing these factors
Advance decisions
• Advance decisions to refuse treatment are legally binding as long as they have been properly madeA welcome opportunity to exercise autonomy?
ORPotentially harmful for future care decisions?
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.
Advance care planning
May include: • Medical treatment• Wishes about where they would like to be as
they are dying• Particular likes and dislikes• Who they would most want to be with them
We concludeDecisions about future care are best achieved in the broader context of advance care planning
Welfare attorneys
• People nominated to take health or welfare decisions on behalf of a person if, in the future, they lose capacity to make those decisions themselves
• Must act in the best interests of the person with dementia
We concludeWelfare attorneys are a ‘social good’ and the process of appointing a welfare attorney should be free of charge for everyone
Challenges to welfare attorneys
A welfare attorney may disagree with doctors over the best interests of the person with dementia, and such disputes can be referred to court
We recommend • 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
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issuesDilemmas in care
Professor Julian HughesConsultant in Old Age Psychiatry and Honorary
Professor of the Philosophy of Ageing, Northumbria Healthcare NHS Foundation Trust and Institute for Ageing and Health,
Newcastle University
Overview
• Ethical dilemmas arise on a daily basis• These are often stressful• Those providing care need more support in
tackling these dilemmas • Guidelines are helpful, but not enough
We recommendThose involved in direct care of people with dementia should have access to ongoing education and support in ethical decision making
Assistive technologies
Concerns include:• Intrusion of privacy • Stigma (particularly tracking devices) • Risk of reduced human contact
We conclude
The use of assistive technology should be considered on a case by case basis, taking into account: – the person’s own views about privacy– the likely actual benefit – Impact on the carers’ interests– dangers of loss of human contact
Balancing freedom and risk
We recommend
‘Risk
assessments’
should be
replaced
by ‘risk-benefit
assessments’
Protection from harm
Needs of others
Well-being & autonomy
Risk-benefit assessment
Restraint
Restraint may include:• Physical holding • Straps or belts to keep someone in a chair• Locking doors • Medicines to calm and control behaviour
- The Mental Capacity Act limits the use of restraint to circumstances where it is a “proportionate” response to the likelihood of the person suffering harm
- But there is little guidance on what counts as ‘proportionate’ justification
Using restraint
We recommend • More guidance for carers on when
restraint might count as ‘proportionate’• Support for carers that will minimise the
need for restraint at home• Detailed and practical guidance on the
appropriate use of restraint in care homes for all those working in this sector
Abuse
A recent survey of UK carers for people withdementia found that in the previous 3 months: • 1% had hit or physically hurt the person • 33% reported behaviours categorised as psychological abuse
Abuse and neglect may be the result ofstress, ill-health or exhaustion of the carer
We concludeWe emphasise the need both to act to protect the person with dementia and to support their carer where the person with dementia continues to benefit from their care
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issues
The needs of carers
Dr Jim Eccles
Consultant Physician
Leeds Teaching Hospitals NHS Trust
Joint support in dementia
• In England: 476,000 unpaid carers of people with dementia
• In Europe: 50% of carers of people with late stage dementia spend over ten hours each day providing care
• Professional support should have
a wide focus, helping carers to
support the person with dementia
Trust
• Most carers provide a level of care that
compromises their own well-being• Carers want to help the person with dementia
as much as they are able
“To be cared for by others requires
trust in the carer. It requires recognition of the
carer as caring and of the importance of
human community”
- consultation respondent
Trust
We conclude
Unless there is evidence to the contrary,
there should be a presumption of trust
in carers, by health and social care
professionals, and by care workers
Confidentiality
“Sometimes families do not understand when you explain about confidentiality, and they are frustrated not to be involved in consultations”
- consultation respondent
• We support the position that confidential information should be disclosed only in the best interests of the person with dementia• Best interests are often interpreted too narrowly; carers will generally need the same level of information as any other member of the caring team
Considering carers’ own interests
• Carers’ needs are important quite apart from
any benefit to the person with dementia
Even though their relationship may be of
fundamental importance to both of them• It may be difficult for carers to genuinely
consider their own interests and needs
Professionals should encourage carers to consider their own needs and interests when they are making difficult
decisions
Launch of the report
Dementia: ethical issues
1 October 2009
Dementia: ethical issues
Research participation
Dr David Wilkinson
Consultant in Old Age Psychiatry
Memory Assessment and Research Centre
Moorgreen Hospital
Southampton
Why choose to be involved in research?
• For access to an experimental treatment with potential benefits
• As taking part can be rewarding or beneficial for patient and family
• For altruistic reasons
• Many people with dementia are perfectly capable of deciding for themselves whether or not to take part in research
• Those who cannot decide for themselves may take part as long as a number of legal requirements are met
Safeguards in research
• Current legal safeguards are appropriate to protect those who are genuinely incapable of making their own decisions
BUT• The ability of people with dementia to consent
is under-estimated• In practice, people who wish to participate are
often excluded - even when they have clearly expressed a wish to take part
We conclude More should be done to help those who wish to participate in research to do so
Facilitating research
Important factors include:• good clinical trial networks for dementia
research with aftercare• adapting information about trials, so that it’s
easier to understand so people with dementia can give consent for themselves
For those without capacity: • research into using ‘advance decisions’ to
state views and wishes • expansion of role of welfare attorneys in
England and Wales
Launch of the report
Dementia: ethical issues
1 October 2009