launch of the report dementia: ethical issues 1 october 2009

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



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


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


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


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



1 October 2009


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’


20

• Diagnosis• Information, communication, signposting• Ongoing care and support• Acute hospital services• End of life palliative 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



1 October 2009


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



1 October 2009


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



1 October 2009


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



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



1 October 2009


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



1 October 2009


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



1 October 2009

launch of the report dementia: ethical issues 1 october 2009

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