Balance between protecting and maintaining rights dementia

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Supporting people’s autonomy: a guidance document

Supporting people’s autonomy: a guidance document

Health Information and Quality Authority

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Health Information and Quality Authority

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About the Health Information and Quality Authority

The Health Information and Quality Authority (HIQA) is an independent Authority

established to drive high quality and safe care for people using our health and social

care and support services in Ireland. HIQA’s role is to develop standards, inspect

and review health and social care and support services, and support informed

decisions on how services are delivered. HIQA’s ultimate aim is to safeguard people

using services and improve the quality and safety of services across its full range of

functions.

HIQA’s mandate to date extends across a specified range of public, private and

voluntary sector services. Reporting to the Minister for Health and the Minister for

Children and Youth Affairs, the Health Information and Quality Authority has

statutory responsibility for:

 Setting Standards for Health and Social Services — Developing person-

centred standards, based on evidence and best international practice, for

health and social care and support services in Ireland.

 Regulation – Registering and inspecting designated centres.

 Monitoring Children’s Services — Monitoring and inspecting children’s

social services.

 Monitoring Healthcare Quality and Safety — Monitoring the quality and

safety of health services and investigating as necessary serious concerns

about the health and welfare of people who use these services.

 Health Technology Assessment — Providing advice that enables the best

outcome for people who use our health service and the best use of resources

by evaluating the clinical effectiveness and cost-effectiveness of drugs,

equipment, diagnostic techniques and health promotion and protection

activities.

 Health Information — Advising on the efficient and secure collection and

sharing of health information, setting standards, evaluating information

resources and publishing information about the delivery and performance of

Ireland’s health and social care and support services.

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Note on this guidance

This guidance document is produced by the Health Information and Quality

Authority (HIQA). It supports the commitments made by HIQA in 2013 to ensure

that the rights of vulnerable services users are placed at the heart of our work,

whether that be in development of standards and guidance or in our assessment of

the quality and safety of services through our programmes of regulation. It is HIQA’s

belief that through our increased focus on rights, those providing services will

become increasingly aware of their responsibilities in promoting and protecting

service users.

The core human rights principles to be found in HIQA’s standards and service

assessments can be summarised as:

 fairness

 respect

 equality

 dignity

 autonomy

HIQA’s motivation in developing and adopting a rights-based approach and in the

development of associated guidance is that it can enable a move beyond questions

of strict legal compliance to ensuring delivery of effective public services which

respect individual rights and put the needs of individual service users at their heart.

The purpose of this guidance on autonomy is to help services to demonstrate how

they show respect for human dignity, how they provide person-centred care, and

how they ensure an informed consent process that values personal choice and

decision-making. By ensuring that people’s autonomy is respected, service providers

will improve the quality of care, safety and quality of life of people who use health

and social care services.

In considering and adopting this guidance, we would recommend that providers of

services ensure:

1. A clear understanding of supporting autonomy within the organisation — this

will require training of the executive and non-executive leadership and

management within the organisation.

2. A policy review — possibly with the use of a supporting autonomy champion

within the organisation.

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3. Organisational reflection on strategic incorporation of a human rights based

approach in the development of their corporate plan, strategic objectives and

outcomes.

4. Review of the work carried out by staff and how the application of this

guidance on supporting autonomy can add value to the lives of those in

receipt of services

The guidance explains the meaning of autonomy, and outlines a supporting

autonomy framework. A separate explanatory leaflet — entitled My Choices: My

Autonomy, which explains the significance of this guidance to people using services

— is available on www.hiqa.ie.

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Glossary of terms used in this report

This glossary details important terms used in this guidance document and a

description of their meaning in the context used.

Accountability: being answerable to another person or organisation for decisions,

behaviours and associated consequences.

Adverse event: an undesired outcome that may or may not be the result of an

error. 

Autonomy: autonomy relates to being human and worthy of respect. In a practical

sense, it is the ability of an individual to direct how he or she lives on a day-to-day

basis according to personal values, beliefs and preferences. In health and social

care, this involves the person who uses services making informed decisions about

the care, support or treatment that he or she receives. The ability to be

autonomous, and make decisions, can be supported and developed.

Capacity (legal capacity): in practice, having legal capacity means being

recognised as a person who can make decisions. It includes the capacity to be both

a holder of rights and an actor under the law [the ability to exercise those rights].

Legal capacity to be a holder of rights entitles a person to full protection of his or

her rights by the legal system. Legal capacity to act under the law recognises the

person as an agent with the power to engage in transactions and to create, modify

or end legal relationships. 

Capacity (mental capacity): the ability of a person to understand the nature and

consequences of a decision to be made by him or her, in the context of the available

choices at the time the decision is to be made. Essentially, individuals may require

various supports to assist the decision-making process. A person should not be

regarded as unable to understand information relevant to a decision if he or she is

able to understand an explanation of it which is given to him or her in a way that is

appropriate to his or her circumstances (whether using simple language, visual aids

or any other means of communication). 

 Adapted from: Thomas EJ and Brennan TA. Errors and adverse events in medicine: An overview. In:

Vincent C, ed. Clinical Risk Management: Enhancing Patient Safety. London: BMJ Publishing, 2001,

pp. 31–43. In: World Health Organization. Conceptual; Framework for the International Classification for Patient Safety. Version 1.1. Technical Report. WHO; 2009. Available online from: http://www.who.int/patientsafety/taxonomy/icps_full_report.pdf.  United Nations (UN) Convention on the Rights of Persons with Disabilities. General comment No. 1.

Article 12: Equal recognition before the law. Committee on the Rights of Persons with Disabilities: Eleventh session; 2014.  Assisted Decision-Making (Capacity) Bill 2013. Dublin: Stationery Office; 2013.

http://www.who.int/patientsafety/taxonomy/icps_full_report.pdf
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Consent: the giving of permission or agreement for an intervention, receipt or use

of a service or participation in research, following a process of communication in

which a person using a service has received enough information to enable him or

her to understand the nature, potential risks and benefits of the proposed

intervention or service. 

Positive risk assessment: positive risk-taking is weighing up the potential benefits

and harms of exercising one choice of action over another. It involves identifying the

potential risks involved (good risk assessment), and developing plans and actions

that reflect the positive potentials and stated priorities of the service user (good risk

management). It involves using available resources to achieve the desired

outcomes, and to minimise harmful outcomes. 

Risk: the likelihood of an adverse event or outcome.

Risk management: the systematic identification, evaluation and management of

risk. It is a continuous process with the aim of reducing risk to an organisation and

individuals.

Service-provider: person, persons or organisations that provide services. This

includes staff and management that are employed, self-employed, visiting,

temporary, volunteers, contracted or anyone who is responsible or accountable to

the organisation when providing a service. Accountability to the organisation and

responsibility for care provided extends to those persons who may not be members

of a regulated profession.

 National Consent Advisory Group. National Consent Policy. Dublin: Health Service Executive (HSE);

2013.  Morgan, S. Positive risk-taking: a basis for good risk decision-making. Health Care Risk Report,

March: 20-21; 2010.

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Contents

About the Health Information and Quality Authority ............................................... 3

Note on this guidance .......................................................................................... 4

Glossary of terms used in this report ..................................................................... 6

Section A. Introduction — about the guidance .......................................... 10

1. What is autonomy and why is it important? .................................................... 10

2. What is this guidance about and who is it for? ................................................ 11

3. Why is this guidance important? ..................................................................... 11

4. How was this guidance developed? ................................................................ 13

5. How does this guidance relate to existing HIQA standards and regulations? .... 13

Section B: The guidance ............................................................................. 14

6. Promoting autonomy in health and social care — key principles ...................... 14

7. A supporting autonomy framework for service providers ................................. 15

7.1 Respect the person’s right to autonomy ................................................... 17

7.2 Avoid pre-judging ................................................................................... 20

7.3 Communicate appropriately to establish, explore and promote preferences 21

7.4 Balance rights, risks and responsibilities .................................................. 26

7.5 Agree person-centred supports ............................................................... 29

7.6 Implement and evaluate supportive actions ............................................. 31

8. Barriers to autonomy ...................................................................................... 33

9. Conclusion .................................................................................................. 34

Resources.................................................................................................... 35

References .................................................................................................. 40

Appendices .................................................................................................. 44

Appendix 1 — Terms of Reference: Autonomy Guidance Advisory Group ............ 44

Appendix 2 — Members of the Autonomy Guidance Advisory Group convened by

the Health Information and Quality Authority ............................... 45

Appendix 3 — Location and membership of the three Action-learning Groups ..... 47

Appendix 4 – Understanding autonomy in health and social care ......................... 49

Appendix 5 — Self-reflection checklist for health and social care providers: Am I

respecting and promoting autonomy? ........................................... 59

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Section A. Introduction — about the guidance

1. What is autonomy and why is it important?

Although there are many different definitions of autonomy, there is some general

agreement about the term. (1-7)

Personal autonomy, which this guidance focuses on,

refers to an understanding of human beings as being worthy of respect. (2)

This

includes respecting a person’s dignity, privacy and his or her choices. Respect for

autonomy is important in the context of health and social care, as it is central to

person-centred care.

In a practical sense, and in general use of the term, autonomy is about self-

determination (directing how one lives). (8)

Autonomy is the ability of an individual to

direct how he or she lives on a day-to-day basis according to personal values, beliefs

and preferences. In health and social care, this involves the person who uses

services making informed decisions about the care, support or treatment that he or

she receives.

Informed consent is one important practical example of the principle of autonomy.

To ‘give consent’ to a medical treatment or a service means to give permission. The

definition of consent provided by the National Consent Advisory Group’s National

Consent Policy specifies the importance of communication and information sharing in

the consent process. (9)

The purpose of communication is to ensure that before giving

consent, people using services have sufficient information to understand the care,

support, or treatment they are agreeing to, and understand the associated potential

risks or benefits.

People who use health and social care services have the right to control their own

lives, and the right to make informed decisions on matters that relate to them.

Individuals may require different levels of assistance to exercise this control and

make their own decisions, and therefore health and social care providers have a key

role in this process. This involves providers taking practical steps to promote and

support people’s autonomy.

 Autonomy can also be defined in a political sense, referring to the autonomy, or power, of a state

or nation.

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2. What is this guidance about and who is it for?

This guidance explains the meaning of autonomy and outlines a supporting-

autonomy framework for implementing good practice in promoting people’s

autonomy when they are using health and social care services. The guidance is

written for providers of all adult health and social care services that are regulated by

HIQA. The aim of the guidance is to assist in promoting and supporting individuals’

autonomy, choice and decision-making in the care setting.

Health and social care providers should champion autonomy in their services. People

who use services may be vulnerable due to personal circumstances, or possible

power imbalances, and may not be in a position to promote their own autonomy. A

supplementary explanatory leaflet, My Choices: My Autonomy, explains the

significance of the guidance for people receiving care, support and treatment. This

shared understanding is important. The leaflet is available on www.hiqa.ie.

Central to the guidance is the supporting autonomy framework, which outlines six

steps involved in promoting autonomy. These are outlined in Section 7 of this report.

The framework applies to adults in health and social care services. While autonomy

may be promoted in different ways in the acute and social care setting, there are

core principles that apply. The framework is a practical tool to balance service-

provider responsibility and accountability with respect for autonomy and individual

choice.

The guidance document includes a series of examples that explain how the various

stages of the framework apply to real-life health and social care situations. These

examples are based on discussions with people using services and service providers

during the consultation phase. A number of published resources are included further

on in this document to assist people in using the framework in their workplaces. A

glossary at the front of this document explains key terms used in this guidance.

3. Why is this guidance important?

The law, codes of professional conduct, and regulatory standards (10-17)

place

increasing importance on the autonomy of the person receiving care, support or

treatment. This guidance reflects a human rights approach to care delivery. The

guidance aims to maximise the rights and autonomy of the person who uses health

and social care services within a supportive framework. (18-21)

Promoting autonomy is

central to a caring service. Promoting autonomy, choice and decision-making

involves more than keeping people safe and healthy. It involves respecting them,

and their choices, and enhancing their quality of life.

http://www.hiqa.ie/
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Promoting autonomy can sometimes create challenges for individual health and

social care providers. They may not know how best to promote autonomy, and may

be concerned that respecting a person’s autonomous choices could conflict with their

responsibilities — as a care provider — to do no harm. (22-26)

This could arise when a

person’s values, beliefs and preferences may be contrary to what best-evidence

suggests. Service providers may sometimes not promote autonomy because of

concerns for the person’s safety. This can create a risk-averse culture that may

inhibit personal autonomy and disregard human rights. It is important to achieve an

appropriate balance between promoting autonomy and maintaining safety. This

guidance aims to assist in this process.

HIQA acknowledges that promoting autonomy, and improving quality of life, may

sometimes require a degree of risk. People who use health and social care services

are entitled to the dignity and personal development associated with risk-taking. A

positive approach to risk assessment acknowledges that risk-taking is part of a

fulfilled life. (27)

Positive risk assessment considers possible harms, and focuses on individual

strengths and collaborating with people to meet their individual needs. (28-31)

HIQA

supports positive risk assessment in appropriate settings when person-centred

planning and associated necessary safeguards are in place. (32)

This guidance aims to

assist providers in promoting autonomy in an accountable way. The supporting

autonomy framework includes a step where rights, risks and responsibilities are

considered. This section of the framework explains positive risk assessment in

greater detail, and provides a guide to some helpful resources.

All preferences are not necessarily facilitated in accordance with respect for

autonomy. A careful process of individualised risk assessment, communication, and

informed decision-making is essential. A number of factors potentially affect the

extent to which a person’s individual choices can be facilitated. (9)

These can include:

 person’s capacity (ability) to make decisions (33-35)

 respect for the autonomy of others

 specific provisions of The Mental Health Act (36)

 available resources.

It is also important to stress that the issue of inadequate resources is not an

acceptable excuse for poor care.

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4. How was this guidance developed?

The guidance was developed in line with standard guidance procedures produced by

HIQA. Core elements of the process included:

 a literature review

 consulting with an advisory group (see terms of reference in Appendix 1, and

membership in Appendix 2)

 an action-learning consultation with three distinct groups in health and social

care services (see locations and membership in Appendix 3)

An action-learning approach was used as it values practical experience, and is

compatible with the cycle of quality improvement. (37; 38)

Autonomy is a complex term

that can be better understood in everyday practice. (39; 40)

Meetings took place in

health and social care environments, organised by the project lead, as the guidance

developed. This was important to ensure the guidance was informed by and

understood in the practice setting. Problems and solutions in promoting autonomy

were explored from the perspective of various informed and interested parties.

HIQA inspectors were also consulted as part of the process.

5. How does this guidance relate to existing HIQA standards and

regulations?

This guidance document can support providers in implementing various National

Standards produced by HIQA. The guidance supports these National Standards (15-17)

and any associated regulations for health and social care services which promote the

autonomy of adults using services.

The guidance has particular relevance in terms of the following themes in these

Standards, ‘Person-centred Care and Support’ (15;16) and ‘Individualised Supports and

Care.’(17) However, as respect for human dignity, privacy and choice extends across

various aspects of care giving, the guidance is also relevant to other themes and

associated standards. This could include standards in relation to the physical care

environment, intimate care, information sharing and or effective resource

management.

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Section B: The guidance

6. Promoting autonomy in health and social care — key principles

Autonomy can be promoted in different ways depending on the person, his or her

individual needs and the care setting. Promoting autonomy may involve supporting a

young adult in the informed consent process prior to surgery in an acute hospital

environment. In a residential service for older adults, promoting autonomy may be

as simple as helping an individual to start a club in the place where they live. While

in the maternity services, it may involve exploring a woman’s birth plan preferences

with her during the ante-natal period.  Despite these diverse settings, in all

instances the personal preferences of the person are considered in a staged process.

This section lists some key principles about autonomy in health and social care.

These principles are the ideas underpinning the guidance. For readers who wish to

explore these ideas further, the associated legal and ethical aspects of autonomy are

explained in greater detail in Appendix 4.

Key principles about autonomy in this guidance

 Autonomy is one of the ethical principles that health and social care

providers use to guide their practice.

 Autonomy does not always involve total independence; often, decisions

are made based on our relationships with others, or with the assistance

of others.

 Irish and international laws support the promotion of personal autonomy

in health and social care.

 Respect for autonomy is compatible with a human-rights approach to

care.

 Respect for autonomy means that every adult person has a right to be

involved in decisions that affect them.

 The will and preferences of the individual are central to promoting

autonomy.

 Respect for autonomy means that every adult person has a right to

consent to, or refuse, treatment, unless it is decided they do not have the

mental capacity (ability) to do so.

 The issue of autonomy in pregnancy presents additional challenges. The foetus is afforded equal protection to

that of the mother in Irish law in accordance with article 40.3.3 of the Constitution of Ireland. In this sense, the rights and autonomy of both the mother and foetus are considered. In unresolved situations of competing rights, legal advice may be required. For a further analysis of these specific issues see: Wade, K. Refusal of emergency caesarean in Ireland: A relational approach. Medical Law Review. 2013 22(1): pp.1-25.

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 Respect for autonomy means that informed consent involves a process of

communicating with people, and not merely the signing of a consent

form.

 The ability of people to be autonomous and make decisions can be

developed if appropriate supports are put in place.

 The ability to make a decision can change over time and is specific to the

decision to be made. This is a Functional approach to capacity.

 Respecting autonomy involves careful balancing of the rights of people

who use services, their safety and wellbeing, and the professional

accountability of service providers.

 An ongoing process of engagement, and person-centred communication,

with people who use services can help promote autonomy and wellbeing.

 Some individuals may wish to take less of a role in the decision-making

process at some stages in their interaction with services. This should be

respected.

 Respect for autonomy does not mean all choices are facilitated.

7. Supporting autonomy: a framework for service providers

Steps involved in promoting autonomy in health and social care services are outlined

in this section.

This supporting autonomy framework is a practical tool to assist providers to

promote the autonomy of people who use health and social care services (see Figure

2). It involves six steps as follows:

 Respect the person’s right to autonomy.

 Avoid pre-judging.

 Communicate appropriately to establish, explore and promote preferences.

 Balance rights, risks and responsibilities.

 Agree person-centred supports.

 Implement and evaluate supportive actions.

The steps are not necessarily chronological, but highlight significant stages in the

process.

The framework is based on experiences of autonomy in everyday life. (41-44)

In this

sense, autonomy is viewed as an interdependent process that involves our

relationships with other people. This is referred to as relational autonomy. (45-46)

The

framework is compatible with a human-rights approach of supported decision-

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making. (18-21)

It reflects recent developments in assisted decision-making legislation

in Ireland. (11)

It also supports the rights of people who use health and social care

services to make decisions about the care, support and treatment they receive.

Figure 2. Supporting autonomy: a framework for promoting autonomy in

health and social care services

The framework can help health and social care providers to balance respect for

autonomy with professional responsibility and accountability for a quality service. It

not only reflects an approach to caregiving that respects the autonomy of service

users, but also appreciates the concepts of care, responsibility, accountability and

 At the time of publication, the Assisted Decision-Making (Capacity) Bill 2013 had not yet been

enacted. All guidance should be interpreted in accordance with the prevailing law.

Supporting autonomy

Respect the person's right to

autonomy

Avoid pre-judging

Communicate appropriately to establish, explore and

promote preferences

Balance rights, risks and

responsibilities

Agree person- centred supports

Implement and

evaluate supportive

actions

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interdependence that are present in a professional caring relationship. (26; 44; 47-50)

Effective communication with people who use services is a core aspect of the

framework.

This section of the guidance explains the various steps in the framework, and what

they mean for service providers. Each step in the framework incorporates some

practical examples that draw on discussions in the action learning groups. Examples

are not presented in order of importance. Examples include three fictitious case

studies, using the first names John, Claire and Erik. The case studies are followed

through in each step to explain the process that promoting autonomy involves.

7.1 Respect the person’s right to autonomy

Every person who uses health and social care services has the right to have his or

her autonomy respected. This includes respect for their dignity, privacy and personal

preferences. Autonomy can be respected in simple ways in the care setting. This

could involve assisting a person to carry out their daily activities in a manner that

suits their individual needs. The process of informed consent is an important

practical application of respect for autonomy in health and social care.

It is important that people are supported in the decision-making process but are not

subjected to undue influence. When health and social care providers share

information, give advice, or assist in the decision-making process, it should be with

the intention of promoting the autonomy of the person receiving care, support and

or treatment. The will and preferences of the individual is central to the process.

Respecting a person’s autonomy includes respecting what others may consider to be

unwise decisions.

It is essential that people who use services are aware of their right to an active role

in deciding the care, support and treatment they receive. Service providers are

required to appreciate the power imbalances that can occur within services and take

the lead in promoting autonomy. Respect for autonomy does not mean every

preference or choice can be facilitated. The person will require the necessary

capacity to make that particular decision at that specific point in time. If proposed

actions are prohibited by law, affect the autonomy of others, are clinically unsound

or legitimately exceed available resources, a specific choice may not be supported.

However, the issue of insufficient resources should not be an acceptable excuse for

poor care and practice in relation to promoting people’s autonomy. When resource

issues are a factor inhibiting autonomy, they should be reported to the relevant

authority. It may be possible, in some instances, to actively manage resource

challenges to find practical solutions that do not require additional funding.

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What this means for service providers

 Service providers design and deliver care which respects service-users’

dignity, privacy, bodily integrity and personal will and preferences.

 Service providers support policy development, staff training and supervision in

positive risk assessment.

 Individual health and social care providers respect autonomy in line with

legislation, best-available evidence and any codes of conduct produced by

professional regulators.

Examples of respect for autonomy can include the following:

 organising a community homecare package to allow a person to live in their

own home

 including a person in communication, regardless of cognitive ability

 committing to an informed consent process underpinned by person-centred

communication

 respecting a person’s right to refuse professional advice

 introducing and facilitating advance care planning

 having a residents’ forum

 promoting dignity at end of life

 working in creative ways to establish the will and preferences of people who

do not communicate verbally

 creating a sense of the person in the care environment, for example, pictures

in their room, use of life histories

 working inter-professionally to assist in meeting the preferences of people

with complex needs

 providing same-gender accommodation in acute hospital settings

 adopting an open-disclosure policy

 putting in place access to independent advocacy services

 respecting a person’s information as private in accordance with the law

 maintaining privacy and confidentiality in any online and or digital

communication

 creating environments which allow respect for privacy in intimate care

 involving patients, residents and other people using services in assessment,

planning, delivery and evaluation of their care, support and treatment

 operating restraint-free environments wherever possible. Any restrictive

practices should be person-centred, policy driven and based on individual risk

assessment

 preserving human dignity and protecting vulnerable adults from abuse.

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Case study A, John: Example 1

John is an older adult with dementia living in a community-nursing unit. John is

scheduled to have a total hip replacement in hospital, following referral by his

general practitioner (GP) for unresolved hip pain. In accordance with respect for

John’s autonomy, the team at the hospital appreciates John’s right to an informed-

consent process. This is evident in its efforts to communicate effectively with him to

date, and seek his permission to discuss his care with family members. Staff in the

hospital and the community nursing unit are committed to working with John to

support his autonomy and promote his role in the decision-making process.

Case study B, Claire: Example 1

Claire is a young woman with an intellectual disability. She attends a vocational

education centre and wants to travel to classes unaccompanied on public transport.

Respect for her autonomy suggests that this is the right thing to do. Claire is 19

years old and wants some independence like the other students. However, the team

in the education centre and her parents have concerns as Claire has never travelled

alone and may be at risk of harm from traffic, being hassled, or could get lost in an

unfamiliar environment.

Despite these legitimate concerns, the staff and Claire’s parents appreciate how

important this choice is to Claire. They respect her autonomy and personal

preferences, and consider how best to facilitate her choices. Claire lives in a

community with other people. Claire is encouraged to reflect on how this choice

could affect her personal safety and how it affects her parents and care workers who

are concerned about her wellbeing. Claire’s request to use public transport is not

facilitated immediately but a staged process of skills building is put in place for her.

Case study C, Erik: Example 1

Erik is a middle-aged Western-European man who has lived in Ireland for the past

two years. Erik is currently being cared for by his general practitioner (GP) and the

local public health nurse. Erik has Type 1 diabetes and has a diabetic leg ulcer due

to the long-term vascular complications of his diabetes. The vascular team at the

hospital clinic have recommended a vacuum assisted dressing to heal the wound.

Erik refuses a vacuum dressing stating that he would not like to have a device like

that attached to his leg when he goes to his weekly card game. The GP and public

health nurse respect his right to refuse treatment, even though, based on available

evidence, they consider it an unwise decision. The public health nurse and GP

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respect Erik’s right to autonomy, and consider how best to balance that right with

their responsibility to deliver evidence-based care, and their concern for his

wellbeing. Following further discussion between Eric, the public health nurse and the

GP, a decision is made to continue with more standard ulcer dressings, to increase

pain relief medication and arrange follow-up observation. All three agree to review

the decision in a month’s time.

7.2 Avoid pre-judging

Every person is presumed to have capacity to make his or her own decisions unless

there is evidence to the contrary. Pre-conceived ideas about autonomy are not

appropriate. People may differ in terms of the amount of assistance they require to

make decisions. This does not mean they lack decision-making capacity. In line with

a functional approach to capacity, a person may have different decision-making

abilities depending on the decision to be made and the time at which the decision is

required. All individuals may require assistance with decision-making at different

points in their lives. While it is important not to underestimate the ability of a person

to make his or her own decisions, it also important not to overestimate the extent to

which a person may be confident to make decisions on his or her own.

What this means for service providers

 Service providers have systems in place to support decision-making.

 Services create a culture in which the decision-making potential of all

individuals is respected.

Examples of avoiding pre-judging include services:

 focusing and maximising human potential and avoiding a focus on

limitations

 respecting that an unwise choice does not necessarily mean a lack of

capacity

 presuming that all persons have ability to make their own decisions unless

an assessment of capacity, in line with the law, indicates otherwise

 treating people in a non-discriminatory manner

 avoiding overestimating decision-making ability in some circumstances. For

example, if an expectant mother may have worked as a nurse and this is

known to the service, this does not mean that she requires less

information or support prior to her admission to the labour ward

 appreciating that people have different life goals, needs and wants, for

example, a person in a residential setting may wish to spend a lot of

money on the most recent jersey from their football team.

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Case study A, John: Example 2

John’s care team in the community-nursing unit, and the hospital, do not pre-judge

his ability to make decisions based on a diagnosis of dementia. Hospital policy

includes reference to supporting people with cognitive impairment to be involved in

decisions that affect them. The community-nursing unit has always engaged with

John in a manner that encourages his role in decision-making. John has indicated

that he likes his daughter to be involved in the decision-making process. She visits

regularly and assists John in his communication with the community hospital staff.

Case study B, Claire: Example 2

Claire’s decision-making ability is not pre-judged because of her intellectual

disability.

Case study C, Erik: Example 2

Erik’s refusal of treatment is not viewed as an indication of lack of capacity, despite

the healthcare team’s view that it is an unwise decision.

7.3 Communicate appropriately to establish, explore and promote

preferences

Promoting autonomy requires an ongoing process of communication to address

individual need. This requires truthful, open communication and an atmosphere of

trust and mutual respect. Effective communication is the cornerstone of informed

consent and is essential to ascertain an individual’s will and preferences with regard

to care, support and treatment. Effective communication can also identify any

supports required in the decision-making process.

A shared dialogue about care, support and treatment will ensure that information is

both given and understood. A person’s preferences and requirements for assistance

with decision-making may change over time. An awareness of the service-user’s

personal story is an important aspect to promoting autonomy. This story can only be

known through real engagement with people who access services. While clinical data

can assist in making appropriate assessments, information about a person, his or her

life and what is important to them is required to promote autonomy in a meaningful

way. (44; 51-52)

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A person must be given information in a manner they can understand to assist them

to make decisions. The communication process should accommodate any specific

communication needs and be culturally sensitive. Communication should ideally take

place at a time that people are best able to assimilate information. Plain language

and easy-to-read documents will help with communication.

It is essential that communication in the consent process is a two-way process. This

will enable sufficient discussion, and move beyond a mere process of

authorisation. (53)

If an individual has an extensive cognitive impairment or

communication difficulties, his or her preferences can be identified with the

assistance of family members and carers who are aware of his or her needs and

wishes. Family involvement must be with the person’s consent.

Should the communication process suggest an individual lacks capacity to make a

specific decision, then the person’s capacity should be assessed in accordance with

the law. Every effort should be made to support the person to make his or her own

decisions. A lack of supportive measures should not be confused with a lack of

capacity. Capacity is assessed in accordance with a specific decision at a specific

time. The current test for capacity in Ireland is a three-part test. It is referred to as

a ‘Functional Test’ for capacity. Capacity to consent to, or refuse, treatment is

dependent on the following criteria:

 Does the person understand and retain the information?

 Does the person believe the information?

 Does the person use the information to weigh up the risks and benefits of the

situation and make a choice? 

 This is referred to as the ‘C test’. The C test is based on UK case law, Re C - Re C [1994] 1WLR

290. Recent case law in Ireland supports this (Fitzpatrick & Anor v K & Anor [2008] IEHC 104). Note that capacity should be assessed in accordance with the prevailing law. At the time of preparing this

guidance, the Assisted Decision-Making (Capacity) Bill 2013 was awaiting enactment.

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What this means for service providers

 Services communicate with people to establish their identity as a unique

individual. Autonomy cannot be promoted unless the person and their

preferences are known.

 Service providers recognise possible power imbalances in order to promote open

communication.

 Service providers have processes in place to assess capacity in accordance with

legislation and best available evidence.

 Services consult with family and friends to assist in identifying the preferences of

the person receiving care, support or treatment. Services are mindful of

confidentiality in this regard.

Examples of effective communication to establish, explore and promote

preferences include:

 basing person-centred communication on individual needs assessment

 using plain language, and or easy-to-read documents as required (refer to the

resources section for some examples)

 communicating to explore choices that may cause harm. For example, discussion

with a woman in labour, who is refusing a clinically indicated caesarean section,

may reveal inaccurate concerns which can be corrected

 assessing understanding at the time of giving information. Asking questions that

avoid yes and no answers, for example, asking: “What is your understanding of

this treatment plan?”

 establishing the circumstances that support effective communication. For

example, a comfortable, quiet, unrushed environment

 speaking with people in a respectful and approachable way

 working creatively with people who are unable to speak to establish processes of

communication, for example, use of communication aids such as pictorial

systems, picking up non-verbal cues, use of eye contact, use of assistive

technologies

 sharing patient and or service-user information in a variety of mediums to

support written text, such as pictures, DVDs, online

 recognising the significance of non-verbal cues. This can include interpreting

behaviour that challenges as being responsive behaviour and an indication of

possible need. As an example, a person who continuously throws cushions on the

floor may be indicating a wish to sit on the floor in comfort with use of a bean

bag

 using interpreters or technology to communicate with people who do not speak

English

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 finding out what matters to the person in relation to their care, support or

treatment

 using communication and or hospital passports to explain a person’s needs and

wants when they are in unfamiliar environments  (see the resources section of

this guidance report for examples of passport documents)

 promoting end-of-life discussions and advance care planning to enable evidence

of expressed will and preferences in future care situations (see the resources

section for some examples of advance care planning tools).

Case study A, John: Example 3

With his permission, John’s daughter attends the hospital pre-assessment clinic with

him. John’s cognitive ability fluctuates. He can communicate verbally but sometimes

requires assistance to take in and understand information. He is very sensitive to

background noise and finds large-group conversations difficult. John’s daughter is able

to share this detail with the team at the hospital.

John also brings his hospital passport with him from the community-nursing unit. John’s

passport explains John’s specific communication needs in addition to other information

about his needs, wants and his life story. It outlines that John was a school principal and

loved fishing during his retirement. John had also completed an advance care-planning

document in accordance with the policy of the community-nursing unit.

All staff in the pre-admission clinic appreciate that John communicates best in a quiet

environment. Any non-essential staff are asked to leave the consulting room on this

occasion. Through a process of communication, using clear language, at a slow pace,

the surgeon establishes that John has the capacity to consent to surgery. John indicates

that he understands the purpose of the surgery, the risks involved, and is able to retain

and weigh up those risks to give his permission to proceed at this time. John sometimes

refers to his daughter for assistance during the decision-making process. However, staff

communicate directly with John. The consent process is documented in his hospital

notes by the surgeon.

The nurse and physiotherapist spend some time with John after the consultation, to

explain in detail what the post-surgical period will be like, and establish any specific

post-operative needs. Additional written information is given, using plain language

statements about surgery and explanatory pictures. John is provided with a follow-up

contact number to raise any future queries. John and his daughter are also introduced

 Communication, or hospital, passports provide a brief outline of the specific needs of individuals

who may not be able to communicate in an unfamiliar environment. They are predominantly in use in dementia care and intellectual disability settings, but can be useful for any person with a cognitive

impairment.

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to the medical social worker and her role is explained. As John will be returning to the

community-nursing unit, discharge planning is arranged by the medical social worker

and or nursing staff in association with the nursing staff in the unit.

Case study B, Claire: Example 3

Claire can communicate very effectively. The education centre staff, her family and staff

in the residential centre have always supported Claire to express her preferences and

engage in conversation. Claire requires information in an easy-to-read format in order to

take it in. Claire’s social care worker asks another student in the centre to talk to Claire

about how he developed skills in using public transport independently over a period of

time. Issues about choices, and balancing safety and choice, are discussed in the house

group meeting. The social care worker, Claire and others who live in the house

contribute to this discussion. Claire writes about this choice, and how to progress it, in a

decision-making diary. 

Case study C, Erik: Example 3

Erik is currently distressed about the chronic nature of his diabetes diagnosis, the onset

of complications and planned management strategies. The public health nurse explains

to her line manager that she needs to spend some extra time with Erik to explore his

decision to refuse the vacuum-assisted dressing. In the course of discussions with Erik,

he reveals that he feels the management of his diabetes is taking over his life and that it

is causing him great distress. The public health nurse listens to his concerns and

discusses how he can accommodate treatment measures within his daily life.

This may include pre-planning meals out with friends in advance to adhere to dietary

recommendations. It could also involve, where possible, reorganising the time of

vacuum-dressing changes to suit Erik’s lifestyle. Erik seems open to negotiation

regarding the vacuum dressing once he realises the nurse is willing to work with his

specific quality-of-life needs, in addition to more general clinical needs. Erik retains the

right to refuse the treatment proposed but agrees to consider the points raised.



The use of a decision-making diary has been noted as a useful step in supported decision-making,

by the Office of the Public Advocate in South Australia in an evaluation of its processes. For further information, see: Wallace M. Evaluation of the Supported Decision Making Project. Office of the Public Advocate (Government of South Australia); November 2012. Available online from: http://www.opa.sa.gov.au/resources/supported_decision_making. (See: Participant Experiences

{Johnny} p.17).

http://www.opa.sa.gov.au/resources/supported_decision_making
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7.4 Balance rights, risks and responsibilities

Health and social care providers are responsible and accountable for the extent to

which they promote autonomy, deliver quality care and maintain the safety of

people who use health and social care services. Codes of professional conduct,

contracts of employment and the rule of law underpin this accountability. People

who use health and social care services are responsible for the decisions they make

when those decisions are informed, voluntary and made with sufficient capacity. 

While personal limitations and or vulnerability should not prevent individuals from

being autonomous or making decisions about their care, support and treatment, it is

important to consider a person’s vulnerabilities when exploring their choices with

them. Taking the time to consider any limitations, and how they can be addressed,

will prevent the abandonment of service-users under the guise of promoting

autonomy. In this way, autonomy can be promoted while also protecting people who

use services. Allowing a compromised person do as they wish, without appropriate

assessment and support, is not respecting or promoting autonomy.

Appropriate risk assessment is essential to ensure that autonomy is promoted in a

safe, supportive environment. Risk assessment should incorporate best available

evidence. Positive risk assessment acknowledges the role of risk in human

development, and prevents a risk-averse culture from developing, which may

impede autonomy, human rights and human flourishing. A risk-averse culture may

result in restrictive practices that are unnecessary.

Some additional resources for health and social care providers around positive risk

assessment are included in the resource section of this document. Self-reflection can

be used by health and social care professionals to enable them to consider the

extent to which they balance the competing ethical principles of ‘autonomy’ and ‘do

no harm’. This can help promote autonomy and safety. See Appendix 5 for a self-

reflection checklist.

Following a risk assessment, and discussion about these risks, both parties may

come to a negotiated position. Alternatively, the individual may choose to ignore

professional advice and engage in behaviours that constitute a significant degree of

risk to their health and wellbeing. The engagement with people using services is

central to professional accountability. Meaningful interaction about rights, risks and

responsibilities is required. While the decisions of individuals must be respected,

respect for autonomy can never be used to avoid engagement and discussion. It is

essential that all decisions are fully informed as part of a thorough consent process.

 The concept of shared patient and or service-user responsibility, and subsequent contributory

negligence, cannot be assumed in the Irish courts. Irish case law has recognised the relationship between patient and specialist as a ‘dependent’ one, and outlines the duties of healthcare

professionals in this regard. For further detail, see Philp v Bon Secours Hospital [2004] IEHC 121.

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It is also important to document the consent process and discussions regarding risk.

Refusal of treatment is to be respected unless the person lacks the capacity to make

that specific decision. Any refusal of treatment is also documented. Documentation

should be completed by the health or social care professional who has been

engaged in the discussion with the person.

What this means for service providers

 Service providers balance the person’s right to autonomy with the service’s

responsibility to deliver safe, evidence-based care.

 The ethos of service providers is to promote autonomy in order to avoid a risk-

averse culture.

 Service providers appreciate the importance of safeguarding when facilitating the

person’s autonomy and choices.

Examples of balancing, rights, risks and responsibilities include:

 carrying out evidence-based, person-centred risk assessments to establish the

magnitude and likelihood of risk

 considering the person’s strengths in the risk assessment process

 engaging in personal reflection to identify over-protective behaviours (see the

checklist in Appendix 5)

 engaging in effective communication as outlined in the step above to establish

factors that may be influencing decisions

 explaining the risks associated with personal preferences. For example, the

midwife caring for a woman who refuses to discontinue smoking during

pregnancy will continue to engage with the woman during her ante-natal care, in

a non-judgmental manner, to ensure she understands the associated risks

 balancing a person’s preferences with a professional obligation to give safe,

evidenced-based care. In the example above, the midwife informs the woman of

smoking cessation and stress reduction programmes and/or strategies. She

continues to care for the woman and monitor the pregnancy for any deviations

from the norm. All care and education is documented

 negotiating with people to balance their wishes with safe, health-promoting

behaviours where possible. For example, a person who wants to eat unhealthy

fast-foods five times a week may agree to eat this type of food only at the

weekend in order to improve their overall health and wellbeing.

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Case study A, John: Example 4

John’s surgeon explains the risks associated with surgery during the consent process in

a manner John can understand. John may wish to have his daughter present to support

him. Knowledge of these risks is an important factor to facilitate John to give an

informed consent. An opportunity is given to ask questions. If John refuses the surgery,

the risks associated with not having the operation will be explained. These include the

likely persistence of his osteoarthritis pain, and the need for ongoing pain relief

medication.

John’s capacity to refuse treatment is assessed in exactly the same way as his capacity

to consent to treatment (see example 3). John retains a right to refuse treatment, once

it is established he has the capacity to do so. Refusal of treatment should not be

interpreted as a lack of capacity without appropriate communication and assessment.

Case study B, Claire: Example 4

A thorough discussion takes place with Claire to explain, in a way she can understand,

how dangerous the town centre can be in times of peak traffic without proper use of the

rules of the road. The steps involved in travelling to the centre independently are listed

and any risks are identified. The positive aspects of taking this risk are also listed. A

compromise occurs where Claire agrees to be assessed weekly on another aspect of

travelling safely to the centre, until she is eventually allowed to travel unaccompanied.

This involves Clare demonstrating that she applies the rules of the road. It also includes

Claire accepting responsibility for not wearing head phones when walking.

Claire discusses this support plan with her parents who are happy with the level of

support in place. However, a social worker (Kate) who is working with Claire in the

vocational education centre is concerned about her accountability if Claire is harmed

during her journey to and from the centre. The process of communication with Claire

and the safeguarding measures in place to develop her competency in using public

transport show that autonomy is promoted in a responsible way.