Transcript Slide 1

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 issues
The 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 issues
Introduction and ethical
framework
Professor Tony Hope
Chair 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
Promoting the interests of the person with
dementia and those who care for them
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
An ethical framework:
Component 5
Acting in accordance with solidarity
• The belief that people with dementia are
fellow citizens and that we are all ‘fellowtravellers’
• 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
What is ethical care?
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?
•
•
•
•
•
Diagnosis
Information, communication, signposting
Ongoing care and support
Acute hospital services
End of life palliative care
20
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 lunch
 participating 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
Dementia
Cancer
0
100
200
£ (million)
Source: House of Commons Hansard 16/12/08
300
Research papers published
since 2002
Dementia
Cardiovascular
Disease
Cancer
0
5
10
15
% of research papers
Source: Knapp M and Prince M (2007) Dementia UK
(London: Alzheimer’s Society), pxv.
20
25
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 emphasise
 good 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 made
A welcome opportunity to exercise autonomy?
OR
Potentially 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 conclude
Decisions 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 conclude
Welfare 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 issues
Dilemmas in care
Professor Julian Hughes
Consultant 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 recommend
Those 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
Well-being
& autonomy
Risk-benefit
assessment
Needs of
others
Protection
from harm
We recommend
‘Risk
assessments’
should be
replaced
by ‘risk-benefit
assessments’
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 with
dementia 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 of
stress, ill-health or exhaustion of the carer
We conclude
We 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