Assisted Decision-Making (Capacity) Act 2015
A Guide for Health and Social Care Professionals
March 2017
Document reference
number
QPSD-GL-ADM-A
Document developed
by
Version number
V1
Document approved
by
Revision date
Approval date
1
ADM Project Team
Quality Improvement
Division
ADM Steering
Committee
Assisted Decision-Making (Capacity) Act 2015
A Guide for Health and Social Care Professionals
Contents
GLOSSARY........................................................................................................................................... 5
1. INTRODUCTION ............................................................................................................................. 9
1.1 What is the Assisted Decision-Making (Capacity) Act 2015? ............................................. 9
1.2 What is the guidance about and who is it for? .................................................................... 10
1.2.1 Scope of this Guide for the 2015 Act ............................................................................ 10
1.2.2 What Decisions are governed by the 2015 Act? ......................................................... 11
1.3 Underpinning philosophy of the 2015 Act ............................................................................ 11
1.4 Summary of main provisions of the 2015 Act...................................................................... 12
1.5 Decision-making support arrangements in 2015 Act ......................................................... 12
1.5.1 Decision-Making Assistant .............................................................................................. 12
1.5.2 Co-Decision-Maker .......................................................................................................... 13
1.5.3 Decision-making Representative ................................................................................... 13
1.5.4 Advance Healthcare Directive ........................................................................................ 13
1.5.5 Enduring Powers of Attorney .......................................................................................... 14
1.5.6 Wards of Court .................................................................................................................. 14
1.6 Decision Support Service ....................................................................................................... 14
1.7 How will the 2015 Act change current practice? ................................................................. 15
1.8 How will the 2015 Act affect the operation of mental health legislation? ........................ 16
1.8.1 Consent or authorisation to treat for mental illness..................................................... 17
1.9 Current status of the 2015 Act ............................................................................................... 17
1.10 What role will the family have in decision-making under the 2015 Act? ....................... 18
2. GUIDING PRINCIPLES OF THE ASSISTED DECISION-MAKING (CAPACITY) ACT
2015...................................................................................................................................................... 19
2.1 Presumption of capacity ......................................................................................................... 19
2.2 Maximising capacity and supporting decision-making ....................................................... 21
2.2.1 Some practical steps to maximise decision-making when assessing capacity ...... 22
2.2.2 Consulting others who can support the person ........................................................... 23
2.3 Respecting people’s choices ................................................................................................. 24
2.4 Intervention is not always required ....................................................................................... 25
2.5 Any intervention should be as limited as possible .............................................................. 26
2.6 Essential considerations when making an intervention ..................................................... 28
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2.6.1 The past and present will and preferences of the relevant person are extremely
important ...................................................................................................................................... 28
2.6.2 Take into account the beliefs and values of the relevant person .............................. 30
2.6.3 People to be consulted if appropriate and practicable ............................................... 30
2.6.4 Act in good faith and for the benefit of the person ...................................................... 31
2.6.5 Consider other relevant circumstances ........................................................................ 31
2.6.6 Summary – Steps for an intervention ............................................................................ 31
2.7 Other people whose views may be helpful .......................................................................... 32
2.8 Respecting the privacy of the relevant person .................................................................... 33
3. FUNCTIONAL CAPACITY – CRITERIA FOR ASSESSING CAPACITY............................. 34
3.1 What is ‘functional’ capacity? ................................................................................................. 34
3.2 When does a person lack the capacity to make a decision? ............................................ 34
3.2.1 Understanding the information relevant to the decision ............................................. 35
3.2.2 Retaining the Information ................................................................................................ 37
3.2.3 Using and weighing the information .............................................................................. 38
3.2.4 Communicating a decision .............................................................................................. 39
3.3 Capacity is time-specific ......................................................................................................... 40
3.4 Capacity is issue-specific ....................................................................................................... 41
4. FUNCTIONAL CAPACITY – PRACTICAL ISSUES ................................................................ 43
4.1 Introduction ............................................................................................................................... 43
4.2 When should capacity be assessed? ................................................................................... 43
4.2.1 An adequate reason or ‘trigger’ exists .......................................................................... 44
4.2.2 An intervention would be possible and appropriate in the circumstances and of
benefit to the relevant person ................................................................................................... 46
4.2.3 Cognitive tests, tests to assess intelligence and capacity determinations .............. 47
4.3 Who should assess capacity? ............................................................................................... 47
4.4 What if there is disagreement about whether decision-making capacity is present? ... 48
4.5 How should capacity be assessed?...................................................................................... 49
4.5.1 Preparing for the assessment ........................................................................................ 49
4.5.2 Before assessment / communicating with the person ................................................ 50
4.5.3 Conduct of the assessment ............................................................................................ 50
4.5.4 The assessment process ................................................................................................ 50
4.5.5 The outcome of the assessment .................................................................................... 51
4.6 How should a capacity assessment be documented? ....................................................... 51
4.6.1 Is there a standard HSE form for documenting capacity assessments? ................. 51
4.7 Refusal to have capacity assessed ...................................................................................... 52
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4.8 Emergency situations involving relevant persons who lack or may lack decisionmaking capacity .............................................................................................................................. 55
4.8.1 Emergency situations and the necessity for immediate intervention ....................... 55
4.8.2 Emergency situations and the practicality of an intervention .................................... 56
4.8.3 Emergency situations and advance healthcare directives ......................................... 58
Appendix 1 - Resources for supporting someone to make a decision....................................... 61
Appendix 2 - Guide to a functional approach to assessing capacity .......................................... 62
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GLOSSARY
2015 Act
The Assisted Decision-Making (Capacity) Act 2015
Advance Healthcare Directive (AHD)
An Advance Healthcare Directive, sometimes known as a living will, is an expression
by a person of his or her will and preferences concerning treatment decisions that
may arise if the person who has made the directive subsequently lacks capacity to
make such decisions.
Capacity
Capacity is defined as the person’s ability to understand, at the time that a decision
is to be made, the nature and consequences of the decision to be made by him or
her in the context of the available choices at that time.
Co-Decision-Maker
This is someone appointed by a relevant person to jointly make decisions with him or
her. This may occur where the relevant person does not have the capacity to make
decision(s) even with the aid of a decision-making assistant, but does have the
capacity to make decision(s) with the help of a co-decision-maker. A co-decisionmaker must be appointed in a written and witnessed agreement.
Court
The circuit court has exclusive jurisdiction under the 2015 Act, apart from certain
matters reserved for the High Court:
a) Any decision regarding the donation of an organ from a living donor where the
donor is a person who lacks capacity
b) Where an application in connection with the withdrawal of life sustaining
treatment for a person who lacks capacity comes before the courts for
adjudication
Decision-Making Assistant
This is someone appointed by a relevant person to support him or her in making a
decision, for example, by obtaining information or personal records, and ensuring
that the relevant person’s decisions are implemented. The decision-making assistant
will not make the decision on behalf of the person. All decisions are made by the
relevant person only.
Decision-Making Representative
This is someone appointed by the Court when the relevant person lacks capacity to
make a decision. The scope of a Decision-Making Representative’s authority to
make decisions depends on the court order, which may include the attachment of
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conditions relating to the making of decisions by the Decision-Making
Representative, or the period of time for which the order is to have effect.
Decision Support Service
The Decision Support Service is a body based within the Mental Health Commission.
Its role is to provide information to people in relation to their options under the 2015
Act for exercising their capacity; provide information to, and provide oversight of the
legally recognised persons who have authority to assist and support a relevant
person; make recommendations to the Minister on any matter relating to the
operation of the 2015 Act; and raise awareness of the Act. The 2015 Act provides for
the appointment of a Director and support staff to form the Decision Support Service.
Enduring Power of Attorney (EPA)
An EPA is an arrangement whereby a Donor (the person who has capacity) gives
authority to an Attorney (the person to whom authority is given) to act on their behalf
in the event that the donor lacks decision-making capacity at any time in the future.
This may be in respect of all or some of the donor’s property and affairs, or to do
specified things on the donor’s behalf, including the making of personal welfare
decisions.
Functional capacity
Assessing capacity on a functional basis means that the emphasis is on the specific
decision to be made at the time the decision has to be made (issue specific and time
specific).
1. Issue-specific: Capacity is assessed only in relation to the decision in
question. A judgement that someone lacks decision-making capacity in
relation to one issue does not have a bearing on whether decision-making
capacity is present in relation to another issue.
2. Time-specific: Capacity is assessed only at the time in question. A judgement
that someone lacks decision-making capacity at one time does not have a
bearing on whether decision-making capacity in relation to that issue is
present at another time.
3. Functional capacity focuses on how a person makes a decision and not the
nature or wisdom of that decision.
Interveners
The 2015 Act provides for legally recognised persons referred to as ‘interveners’ to
support a person to maximise their decision-making capacity. An intervener can be:
(a) The circuit court or High Court
(b) A decision-making assistant, co-decision-maker, decision-making
representative, attorney or designated healthcare representative
(c) The Director
(d) A special visitor or a general visitor, or
(e) A healthcare professional.
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Intervention
An intervention in relation to a relevant person means any action taken, direction
given or any order made in respect of a relevant person under the 2015 Act. The
intervention may be made by the courts, by a health and social care professional, or
any person under the formal agreements set out in the Act. The intervention will
reflect the level of support the person requires from an ‘intervener’ or by the Director
of the Decision Support Service. This includes interventions related to health and
social care made in healthcare settings, in social care settings such as nursing
homes and residential settings for people with disabilities or mental health needs, in
peoples’ own homes and in the community.
Presumption of Capacity
This means that it shall be presumed that a person has capacity in respect of a
specific matter unless otherwise shown. The onus of proving that a person lacks
capacity to make a decision is on the person who is questioning a relevant person’s
ability to make a particular decision.
Relevant person
Relevant person means
 A person whose capacity is in question or may shortly be in question in
respect of one or more than one matter (i.e. a person who may have difficulty
reaching a decision without the support of someone);
 A person who lacks capacity in respect of one or more than one matter, ( i.e.
a person who may be able to make some decisions but not others) or
 A person whose capacity is in question or may shortly be in question in
respect of one or more than one matter and who lacks capacity at the same
time but in respect of different matters (a combination of the above - i.e.
person who now, or may in the future, need support in making a decision in
respect of different matters).
Unwise Decisions
An unwise decision is a decision that a person makes that is different to the decision
that you would make based on the same evidence, and which you believe to be illadvised or risky. The decision may have adverse consequences for the person.
Wardship
Wardship is the current process whereby an application is made to the court in
respect of a person who lacks decision-making capacity. The person who is the
subject of such application is known as a Ward of Court.
Wardship Court
The court that made the wardship order, either the High Court or the Circuit Court.
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Ward of Court
When a person becomes unable to manage their assets because of lack of capacity,
an application can be made to the courts for him or her to become a Ward of Court.
The court must make a decision as to whether the person is capable of managing his
or her own property for his or her own benefit and the benefit of his or her
dependants. If it is decided that the person cannot manage his or her own property
because of lack of capacity, a Committee is appointed to control the assets on the
Ward's behalf.
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1. INTRODUCTION
We all make decisions, big and small, every day of our lives, and most of us are able
to make these decisions by ourselves. Sometimes we may seek information, advice,
or support if the decision we are making is a complex one. There are many people
accessing health and social care services whose ability to make certain decisions
about their life may be affected by a disability, an accident, or a chronic illness- either
on a temporary or a permanent basis. With the right support, these people can
continue, regardless of their condition, to exercise their right to making decisions.
A new law has been passed which recognises and maximises a person’s right to
make their own decisions, with legally recognised supports, wherever possible. The
Assisted Decision-Making (Capacity) Act 2015 was signed into law by the President
on 30th December 2015. This legislation has implications for all who work in health
and social care.
This guidance document has been developed for health and social care
professionals to provide a broad overview of the Act and its main implications on
practice. It also provides guidance to enable health and social care staff to
implement good practice in relation to the Act.
This document is a dynamic document that will be updated and amended as
sections of the Act are commenced.
1.1 What is the Assisted Decision-Making (Capacity) Act 2015?
The Assisted Decision-Making (Capacity) Act 2015 (referred to in this guide as the
2015 Act) reforms Ireland’s existing capacity legislation – the Lunacy Regulations
(Ireland) Act 1871. It establishes a modern legal framework to support decisionmaking by adults who have difficulty now, or may have difficulty in the future, in
making decisions without help, and in some limited circumstances, allows for a court
appointed decision-maker, with legal oversight. The 2015 Act is a key piece of
legislation to enable Ireland to ratify the United Nations Convention on the Rights of
Persons with Disabilities (UNCRPD).
The 2015 Act places an obligation on health and social care professionals to support
a person to make their own decisions as far as possible, and where the person’s
capacity is in question, to provide all practicable support to facilitate the person to
make the particular decision.
The 2015 Act also provides a statutory framework for individuals to make legally
binding agreements to be assisted and supported by a person of their choosing or, if
they lack the capacity to appoint a person of their choice, then the court can appoint
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a person to assist and support them in making decisions about their own personal
welfare, property and affairs. Formalised assistance, based on legal agreements, is
particularly required where the person lacks capacity now or may lack capacity in the
future to make a specific decision in a health and social care setting.
1.2 What is the guidance about and who is it for?
This guidance document is designed to give all health and social care professionals
a broad overview of the 2015 Act and its implications for practice. It provides
guidance to support and enable staff providing health and social care in Ireland to
implement best practice in relation to the 2015 Act.
This HSE Guidance is based on the Assisted Decision-Making (Capacity) Act 2015
Act and as such, in the event of any inconsistency, it supersedes any previous
Guidance provided by the HSE relating to persons who require or may require
assistance in exercising their decision-making capacity, whether immediately or in
the future. All those who work with persons who require assistance in exercising their
decision-making capacity must ensure that they are familiar with its content.
1.2.1 Scope of this Guide for the 2015 Act
The 2015 Act will affect the work of everyone working in health (physical and mental
health) and social care, including those working in statutory, voluntary, community
and privately funded organisations. This comprises of anyone who is involved in the
care, treatment or support of people who may need support to enable them to make
all or some decisions for themselves.
While the 2015 Act is focused on all persons over the age of 18 years, it is
specifically for those whose decision-making capacity is in question, or may shortly
be in question, and those who lack capacity as follows:
 A person whose capacity is in question or may shortly be in question in
respect of one or more than one matter (i.e. a person who may have
difficulty reaching a decision without the support of someone)
 A person who lacks capacity in respect of one or more than one matter, (
i.e. a person who may be able to make some decisions but not others) or
 A person whose capacity is in question or may shortly be in question in
respect of one or more than one matter and who lacks capacity at the
same time but in respect of different matters (a combination of the above i.e. person who needs now, or may in the future need support in making a
decision in respect of different matters)
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The 2015 Act uses the term ‘relevant person’ to describe someone within any of
these three categories, and this term is adopted throughout this Guidance document.
1.2.2 What Decisions are governed by the 2015 Act?
The provisions of the 2015 Act apply to decisions and interventions made with
regard to a relevant person. This includes decisions and interventions related to
health and social care made in healthcare settings, in social care settings such as
nursing homes and residential settings for people with disabilities or mental health
needs, in peoples’ own homes and in the community. The type of decisions that are
covered by the 2015 Act range from day-to-day decisions such as what to wear or
eat, through to more serious and complex decisions about where to live, dealing with
property and finances, or giving consent to a serious medical intervention.
1.3 Underpinning philosophy of the 2015 Act
All persons have equal legal rights. Some people may need assistance and support
to exercise their individual rights. A relevant person, who may lack capacity to make
his or her own decisions due to a disability, life-long condition or acquired condition,
may require assistance and support to exercise his or her individual rights. These
rights are protected under the Constitution of Ireland, the European Convention on
Human Rights and the United Nations Convention on the Rights of Persons with
Disabilities (UNCRPD).
People have the right to control their own lives and the right to make informed
decisions on matters that relate to them. This includes people with intellectual or
physical disability, cognitive difficulties due, for example, to acquired brain injury or
dementia, and people with mental health problems. It must always be presumed
that a person has capacity to make a decision, regardless of the presence of
such conditions or diagnosis. People may differ in the amount of assistance they
require to make particular decisions, but this does not necessarily mean that they
lack decision-making capacity.
The guiding principles of the 2015 Act provide that support must be given to people
who may have difficulty making and communicating decisions. It also requires that
the past will and preference of the person, and their beliefs and values, insofar as is
practicable and reasonably ascertainable, are taken into account, even when he or
she has been found to lack decision-making capacity.
It is essential that implementation of the 2015 Act in health and social care respects
the underlying philosophy and spirit of the 2015 Act - the protection of each person’s
right to make decisions about their own lives even if such decisions seem unwise to
others.
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1.4 Summary of main provisions of the 2015 Act
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The 2015 Act places a legal obligation on everyone, including health and
social care staff, to support a person whose capacity is in question, or who
may lack capacity to make their own decisions.
An assessment of a relevant person’s capacity should only be done after all
practicable steps and efforts to support the relevant person to make his or her
own decision have been taken.
The 2015 Act affirms a flexible ‘functional’ definition of capacity, whereby
capacity is assessed only in relation to the matter in question and only at the
time in question. Therefore, ‘blanket’ assessments of a person’s capacity
should not be made – the assessment must relate to the particular
decision to be made (‘issue-specific’) and at the time the particular
decision is to be made (‘time-specific’).
The 2015 Act recognises that a person’s capacity can fluctuate so he or she
may appear to lack capacity in relation to a certain decision on one day but
have capacity in relation to the same decision on a different day. The
functional approach of assessing capacity on a time-specific and issuespecific basis is of particular assistance in relation to the assessment of a
relevant person with fluctuating capacity.
Where health and social care staff must make an intervention on behalf of the
person due to their lack of capacity and the urgency of the situation and
decision required, staff must seek to establish the will and preference, the
belief and values of the person, and these must inform any intervention.
1.5 Decision-making support arrangements in 2015 Act
The 2015 Act allows a relevant person whose decision-making ability may be in
question, to create and enter into agreements with persons whom they trust (this
might be a family member or trusted friend) to support them to make their own
decisions in relation to their personal welfare, property and finances. The 2015 Act
provides for a range of formal supported decision-making agreements, with different
levels of support from a third party. Which arrangement the person enters into will
depend on their own level of capacity to make certain decisions and the level of
support they require from a person of their choosing to assist them (known in the Act
as an intervener). A relevant person can have a number of different agreements, at
differing levels of support, for different decisions.
1.5.1 Decision-Making Assistant
The relevant person may appoint a decision-making assistant in a decision-making
assistance agreement, to help him or her in making one or more decisions including,
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for example, obtaining information or personal records and ensuring that the relevant
person’s decisions are implemented. The decision-making assistant will not make
the decision on behalf of the relevant person. The decision is made by the relevant
person only. By definition, the relevant person has capacity to enter into the
agreement and to make the particular decision, even if requiring some support. The
relevant person may appoint more than one person as a decision-making assistant
and may specify if the decision-making assistants are to act jointly or not, in respect
of some matters or all matters.
1.5.2 Co-Decision-Maker
The relevant person may appoint a co-decision-maker in a written and witnessed
agreement. The relevant person can make a number of co-decision-making
agreements in respect of different decisions and appoint a co-decision-maker for
each agreement but cannot appoint more than one person as a co-decision-maker in
the same agreement. In this case, the relevant person does not have the capacity to
make the relevant decision(s) with the aid of a decision-making assistant, but does
have the capacity to make the relevant decision(s) with the assistance of the codecision-maker. The co-decision-maker will make the decisions jointly with the
relevant person. The relevant person must have capacity to decide to enter codecision-making agreement.
1.5.3 Decision-making Representative
The 2015 Act operates on the basis that for some people, there may be a point
where even with the supports available, a relevant person may lack capacity to make
certain decisions. If the relevant person lacks capacity to make a decision and has
not made an advance healthcare directive or created an enduring power of attorney
in relation to the decision/s to be made, then an application to the court is necessary.
In such cases, the court may either make the decision itself if it is urgent to do so, or
appoint a decision-making representative to make decisions in those areas on behalf
of the relevant person.The scope of a decision-making representative’s authority to
make decisions depends on the court order, which may include the attachment of
conditions relating to the making of decisions by the decision-making representative,
or the period of time for which the order is to have effect.
1.5.4 Advance Healthcare Directive
The 2015 Act provides that a person with capacity may make an advance healthcare
directive that will come into effect when he or she lacks the capacity to make his or
her own decision. The purpose of an advance healthcare directive is to provide
health and social care professionals with important information on a person’s
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treatment choices and to enable a person to be treated according to his or her own
will and preferences even when he or she no longer has the capacity to make
decisions. In addition to setting out a person’s treatment choices, it will also be
possible for a person to appoint a designated healthcare representative to take
healthcare decision on his or her behalf. (See paragraph 1.8.1 below in relation to
the making of an advance healthcare directive by a person who is involuntarily
detained under the Mental Health Act 2001). Advance healthcare directives must be
made in writing and witnessed. Further detail on advance healthcare directives will
be provided in a forthcoming Code of Practice and will be available through the
Decision Support Service.
1.5.5 Enduring Powers of Attorney
Under existing legislation (Powers of Attorney Act 1996), an individual can create an
enduring power of attorney appointing a person, known as an attorney, to make
decisions on his or her behalf in relation to property and finance or personal care or
a combination of both. The 2015 Act updates the 1996 legislation and allows
someone to also appoint an attorney in relation to some health care matters. The
Enduring Power of Attorney will only enter into force when the person lacks capacity
and the instrument is registered with the Decision Support Service. Further detail on
enduring powers of attorney will be provided in a forthcoming Code of Practice and
will be available through the Decision Support Service.
1.5.6 Wards of Court
The 2015 Act provides that within three years of the commencement of the 2015 Act,
the capacity of each current ward of court must be reviewed by the wardship court.
Depending on the capacity of the ward as determined by the court, the ward will be
discharged from wardship and his or her property returned to him or her, or an
appropriate supported decision-making arrangement may be put in place for him or
her. Further detail on the transition of persons from wardship to the new support
agreements will be provided through forthcoming Rules of Court through the Courts
Service. These will set out the detail of the review process and the procedure to be
followed for the implementation of the order of the court following such review.
1.6 Decision Support Service
The 2015 Act provides that the Mental Health Commission shall appoint a person to
be known as the Director of the Decision Support Service who will be tasked with
supervising and registering the decision-making agreements provided for in the 2015
Act. The Director’s main functions are:
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to promote public awareness of the 2015 Act among the general public,
to provide information to relevant persons and interveners in relation to the
support options available to them for exercising their capacity,
to provide information and guidance to organisations and bodies in relation to
their interaction with relevant persons,
and to establish and maintain a Register of co-decision-making agreements,
decision-making representation orders, enduring powers of attorney and
advance healthcare directives.
The Director of the Decision Support Service will prepare Codes of Practice for
decision-making interveners which will detail how to support someone in a decisionmaking arrangement. The Director of the Decision Support Service will supervise the
operation of the various decision-making support agreements provided for in the
2015 Act and will consider complaints made in relation to the activities of various
interveners, including attorneys appointed under an enduring powers of attorney and
designated healthcare representatives appointed in an advance healthcare directive.
The Director may, following a complaint being made, or on his or her own initiative,
carry out an investigation to ascertain if any intervener is acting outside the scope of
his or her authority, or is in breach of his or her functions under the 2015 Act.
1.7 How will the 2015 Act change current practice?
The 2015 Act brings legal clarity to supporting decision-making and sets out the
statutory criteria for assessing capacity and the guiding principles that must now be
followed. However, staff working in health and social care are already governed by
policies and guidance which are underpinned by the approach required by this
legislation.
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The principles of the presumption of capacity, supporting decision-making and
adopting a functional approach to capacity are supported by the HSE National
Consent Policy. Issues regarding decision-making capacity often arise where
health and social care professionals seek consent for interventions. There is
a close relationship between informed consent and capacity as only persons
with the requisite decision‐making capacity can provide a valid consent to an
intervention or receipt or use of a service. ‘The need for consent … extends to
all interventions conducted by or on behalf of the HSE on relevant persons in
all locations (National Consent Policy 1.1.)
Guidance from HIQA (Health Information and Quality Authority (2016),
Supporting people’s autonomy: a guidance document) and from regulatory
authorities such as the Medical Council (Guide to Professional Conduct and
Ethics 8th ed. 2016) have recommended supporting decision-making and
adopting a functional approach to capacity.
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A functional approach to capacity has been taken by the Courts in legal
cases. When a question has been referred to the court as to whether a person
had capacity, the court has looked at the decision to be made, at the time the
decision had to be made and asked did the person understand the information
about the decision, the choices available to him or her and the consequences
of making or of not making the decision at that time.
While many aspects of the approach required are (or should be) already operational
in practice, staff now have statutory obligations under the 2015 Act. These include
the obligation to support decision-making in so far as possible and to work with the
relevant person to build and maximise his or her capacity. The requirement to
support people to make their own decisions in accordance with the 2015 Act means
accepting that people will sometimes make decisions that may have poor outcomes
for them or that others will judge to be unwise. It is important that staff working in
health and social care document the supports that were put in place in these
particular circumstances.
Could I be criticised if a relevant person’s choice results in serious harm?
There are times when health and social care professionals may be challenged and
asked to explain the reasoning behind their decisions, especially in complex
situations. This may also require discussions at multi-disciplinary team meetings or
case conferences so that all reasonable options can be explored. Health and social
care professionals dealing with such complex cases should clearly document the
steps they have taken in these instances.
There are situations where the person may suffer serious harm, even death, as a
result of his or her own decision if their own will and preference is followed. It is
important in these instances that staff clearly documents every effort they have made
with the person, how risks and consequences were communicated, that they have
followed the principles of the 2015 Act, and have acted in good faith and for the
benefit of the person.
1.8 How will the 2015 Act affect the operation of mental health
legislation?
The 2015 Act provides for the assessment of the capacity of a person to make
decisions in relation to any matter that affects him or her, which includes any
decisions about either the person’s physical or mental health. The fact that a person
is affected by mental ill health does not mean that he or she lacks the capacity to
16
make decisions, and therefore the presumption of capacity applies to all such
persons.
Where the capacity of a person who is being treated for a mental illness is in
question, the appropriate assessment of their capacity is the functional assessment
under the provisions of the 2015 Act, and the statutory criteria set out in the 2015 Act
must be followed. This includes all persons receiving treatment in relation to their
mental health, whether in the community, as a voluntary patient, or if they are being
involuntarily detained under the provisions of the Mental Health Act 2001.
1.8.1 Consent or authorisation to treat for mental illness
The same rights to decision-making and decision-making supports apply to people
receiving mental health treatment voluntarily. A person whose capacity is in
question, or may shortly be in question, and is receiving treatment for his or her
mental illness in the community or as a voluntary patient, can seek the support of
either a decision-making assistant or a co-decision-maker to make decisions in
relation to consenting to treatment for his or her mental illness. Furthermore, the
person can also provide that in the event that he or she lacks capacity, that the
consent for treatment for his or her mental illness in the community or as a voluntary
patient be given by his or her attorney in an enduring power of attorney, or be
provided for in an advance healthcare directive.
However, where a person is suffering from a ‘mental disorder’1 and is involuntarily
detained and is assessed as lacking the capacity to consent to such treatment, the
authorisation of, or consent to, such treatment cannot be given by a co-decisionmaker, a decision-making-representative, attorney or designated healthcare
representative. In addition, a health and social care professional is not obliged to
comply with any direction in an advance healthcare directive by a person who is
involuntarily detained and which relates to his or her treatment under the Mental
Health Act 2001. It is expected that this provision will be amended when the Mental
Health Act 2001 is updated and reformed to take account of the recommendations in
the Report of the Expert Group on the Review of the Mental Health Act published in
2014.
1.9 Current status of the 2015 Act
On the 17th October 2016 the Minister for Justice and Equality and the Minister for
Health commenced specific limited provisions of the 2015 Act to allow for the
appointment of the Director of the Decision Support Service and to provide for the
1
As defined in the Mental Health Act 2001
17
establishment of a multidisciplinary working group to make recommendations to the
Director of the Decision Support Service in relation to codes of practice for advanced
healthcare directives. 2
The commencement of the remaining provisions of the 2015 Act is a matter for the
decision of the Minister for Justice and Equality and the Minister for Health.
1.10 What role will the family have in decision-making under the 2015
Act?
Many people value the advice and assistance of family members (and of others who
are close to them) when they face decisions. Those close to a relevant person are
often able to help health and social care professionals to ascertain the will and
preferences of someone who is unable to make their own decision, or to
communicate their own preferences.
However, as is noted in the HSE National Consent Policy:
‘No other person such as a family member, friend or carer and no
organisation can give or refuse consent to a health or social care service on
behalf of an adult who lacks capacity to consent unless they have specific
legal authority to do so.’
This will remain the position under the 2015 Act. However,
 The 2015 Act will make it easier for a relevant person to make their own
choice about formally appointing someone, such as a family member or
trusted friend, to support the relevant person in decision-making or to act as a
designated healthcare representative to make a healthcare decision on his or
her behalf.
 If a relevant person who lacks capacity to make a decision has not made
such a prior arrangement, the 2015 Act provides the option of a decisionmaking representative being appointed by the court to make decisions on
behalf of the relevant person.
 The 2015 Act also provides that any person appointed to assist or support a
relevant person to make a decision must be a suitable person to be
appointed. There must be no conflict of interest in relation to his or her own
interests and the interests of the relevant person.
2
Provisions are contained in Statutory Instruments No. 515 of 2016 and No. 516 of 2016.
18
2. GUIDING PRINCIPLES OF THE ASSISTED DECISIONMAKING (CAPACITY) ACT 2015
This section will discuss the Guiding Principles laid down in the 2015 Act and will
discuss their relevance and implications for practice in health and social care with
case studies given as practical examples. These principles apply to any intervention
in respect of a ‘relevant person’.
Principles of the Assisted Decision-Making (Capacity) Act 2015







The presumption of capacity
Supporting people to maximise capacity and supporting decisionmaking
Respecting people’s choices and unwise decisions
Any intervention should be as limited as possible
Essential considerations when making an intervention
The inclusion of other people whose views may be helpful
Respecting the privacy of the relevant person
2.1 Presumption of capacity
Section 8(2): It shall be presumed that a relevant person ... has capacity in respect of
the matter concerned unless the contrary is shown in accordance with the provisions
of this Act.
The starting principle for all health and social care professionals must always be the
presumption that the person they are providing care or a service to has the capacity
to make his or her own decisions. Even if they have concerns about the relevant
person’s capacity to make the decision, they must not pre-judge the situation and
must seek to support the relevant person to make his or her own decision as far as
possible.
Some people may require support to be able to make a decision or to communicate
their decision. However, this does not necessarily mean that they cannot make their
own decisions, so health and social care professionals need to be cognisant of this
when forming a view about a person’s capacity. Also, in many cases, a person is
able to make a decision but may need assistance in executing the decision they
have made.
19
What are the implications of the presumption of capacity in health and
social care?
The presumption of capacity prevails unless otherwise demonstrated
It must not be presumed that a person lacks capacity to make a decision solely
because of their:








age,
disability,
appearance,
behaviour,
medical/psychosocial condition (including intellectual disability, mental
illness and dementia),
beliefs,
communication difficulties,
Capacity should not be confused with the reasonableness or wisdom of the
person’s decision. People are entitled to make a decision even if that
decision is perceived by others to be unwise, as long as they understand
what is entailed in their decision. A valid reason or trigger must exist before
questioning a persons’ capacity
Calling someone’s capacity to make a decision into question is a serious matter,
and there must a good reason for doing so. If a health and social care
professional is considering questioning a relevant person’s capacity to make a
decision, the onus is on that professional to show that an adequate trigger/reason
exists to question the presumption of capacity.
Screening for capacity
A person does not have to ‘prove’ his or her capacity to make a decision.
Screening tests in effect reverse the presumption of capacity by asking a person
to demonstrate that he or she has capacity. ‘Blanket’ assessments of a person’s
capacity should not be made – the assessment must relate to the particular
decision being made, and at the time that decision is to be made.
20
Example 1
Mr Browne has given informed consent to gall bladder surgery after a discussion
about the potential benefits and risks with his surgeon Ms Young. A medical
student, noting that Mr Browne has a diagnosis of early Alzheimer’s disease,
asked Ms Young whether it would be necessary to perform cognitive testing and a
formal assessment of capacity before accepting this consent. Ms Young explained
that her starting position was to presume that Mr Browne had the capacity to
decide and this would only change if Mr Browne had obvious difficulties in
understanding the information provided or in making a decision. She noted that
any errors on brief cognitive tests, such as failure to identify the year, could have
no relevance to the specific decision he faced regarding surgery.
2.2 Maximising capacity and supporting decision-making
Section 8(3): A person … shall not be considered as unable to make a decision …
unless all practicable steps have been taken, without success, to help him or her to
do so.
Every effort must be made to encourage and support the person to make the
decision themselves. The level and type of support people require will be determined
by a number of factors such as:
 their ability to make a decision relative to the complexity of the decision to be
made,
 the time available to make the decision and whether the person is used to
making their own decisions.
In some situations, health and social care professionals will have more time available
to support people to make their own decisions compared to others. Even in
emergency situations, however, every reasonable and practicable effort should be
made to enable the person to make their own decision.
The following factors are important:
 Does the person have all the relevant information needed to make the
decision, in a format that he or she can understand? This includes information
about possible choices and options available if he or she fails to make a
decision.
 Could the information be explained or presented in a way that is easier for the
person to understand?
 Are there particular times of the day when a person’s understanding is better,
or is there a particular place where he or she feels more at ease and able to
make a decision?
21


Can anyone else help or support the person to understand the information or
make a choice, for example, a relative, friend or advocate. It is important that
such a person does not put pressure on the relevant person to decide one
way or the other.
Some people may never have made or taken their own decisions so they may
need capacity building, in other words to be supported to ‘learn’ to make a
decision. This may be the case for people with an intellectual disability living
in a residential centre for most of their lives where all decisions were taken for
them by staff. As they become used to making their own decisions and they
grow in confidence, the support they require should reduce.
2.2.1 Some practical steps to maximise decision-making when assessing capacity
Approaches to enhancing a person’s ability to understand information include:
 Using clear, simple and concise language
 While there is often a ‘core’ amount of information that must be understood, it
may be helpful to break down information into smaller sections and pausing to
allow each to be understood
 Avoiding medical terminology and jargon
 Speaking slowly and at an appropriate volume for the person to hear you
 Using concrete examples relevant to the decision to be made
 Setting out the options and choices
 Being aware that many people have difficulty with numerical terms
 Repeating information and reiterating key points
 Pausing to check the person’s understanding.
There are a number of approaches to creating the right environment to facilitate and
support decision-making. These include:
 Choosing the best time when the person is most alert and able to make
decisions
 Choosing the best physical location if possible
 Minimising distractions
 Giving the person time and space to make the decision
 Being aware of any medication which could affect the person’s capacity and
considering delaying the assessment until the effects of the medication have
subsided.
 Ensuring that all communication with the person is tailored to the person’s
individual personality
 Involving other health and care professionals with relevant expertise
The kind of support provided might include:
22




Using a different form of communication (for example, non-verbal
communication)
Providing information in a more accessible form (for example, pictures,
drawings)
Treating a medical condition which may be affecting the person’s capacity or;
Having a structured programme to teach or improve the person’s capacity to
make particular decisions (for example, helping a person with an intellectual
disability to learn new skills). (See Appendix 1)
Person-centred supports refer to ways in which people’s capacity can be built
progressively so that they take more and more decisions for themselves on an ongoing basis. This means that the support assists the person to have greater ability to
make his or her own decisions and live more independently. This type of support is
relevant in health and social care settings, even though the specific nature of support
may vary. Supported mechanisms are identified on the basis of individual need and
evaluated to decide their effectiveness.
2.2.2 Consulting others who can support the person
The 2015 Act allows the relevant person to create and enter into a formal
arrangement with a person of their choice (family or trusted friends) to support the
relevant person to make his or her own decisions in relation to his or her personal
welfare, property and finances, and such people should be consulted if appropriate
and practicable (see 2.6.2).
Example 2
Anne has been living in a residential centre for 10 years having moved there after her
parents died. She has been attending one activity one afternoon each week with a
group of other residents from the centre. When a volunteer was allocated to Anne to
support her to make her own decisions, she worked with her slowly to gain her trust
and to support her to consider and visit different community activities. Anne said ‘no’
to some activities but chose several others to pursue and attended meetings to
discuss her options. Anne is now pleased to have an additional three days a week
participating in community activities of her choice
23
Helping People to Decide for Themselves – A Brief Summary
You must start from the presumption that any person who needs to make a
decision has the capacity to make that decision.
You must make every effort to encourage and support the person to make the
decision themselves.
Consider these factors to assist in the decision-making process.






Does the relevant person have all the relevant information needed to make
the decision?
Could the information be explained or presented in a way that is easier for
the person to understand?
Are there particular times of the day when a person’s understanding is
better?
Is there a particular place where the person might feel more at ease and
able to make a decision?
Can anyone else help or support the person to understand information or
make a choice?
Is there an urgency with regard to the particular decision that has to be
made?
2.3 Respecting people’s choices
Section 8(4): A person … shall not be considered as unable to make a decision …
merely by reason of making, having made, or being likely to make, an unwise
decision.
People can and do make decisions that health and social care professionals may
consider to be unwise. The fact that someone has or is likely to make an unwise
decision is:
(1) Not a reason in itself to question someone’s capacity to make that decision
and
(2) Not evidence that the person lacks capacity to make that decision.
It is never enough that the decision made by a relevant person seems to be an
unwise one. The question is: ‘Does the relevant person have the capacity to make
the decision?’ as opposed to presuming the relevant person lacks capacity because
they make a decision that you consider to be unwise.
In some cases, there can be little doubt about the lack of wisdom of a relevant
person’s decision as, for example, when someone with diabetes fails to eat healthily.
Other decisions, however, often reflect differences in values, goals and preferences
between relevant persons and professionals.
24
As a health and social care professional you may have legitimate reason for concern
for the relevant person’s welfare or fear of an adverse outcome. However, you must
remember that people over 18 years with decision-making capacity have the right to
autonomy and self-determination whether the decision they make is deemed to be
wise or unwise. In these instances, it is important that you have a conversation with
the relevant person detailing the risks involved in his or her decision, and that you
document the steps that have been taken to highlight the risks and benefits of the
choice to the relevant person. It is also important to seek the advice of the multidisciplinary team who are caring for the relevant person.
Example 3
Mrs O’Shea lives alone and has persistent balance problems. She has fallen three
times in the last month and has been lucky to escape serious injury so far. Her
GP, Dr McKenna, has discussed with Mrs O’Shea the risks of continuing to live
alone. He has documented that she is aware of the risks but insists that she
prefers to remain at home and will not accept any interference with her preference
to maintain personal freedom. With Mrs O’Shea’s agreement, Dr McKenna meets
her two daughters, who are understandably very upset and worried about their
mother’s situation and insist that ‘something must be done’.
Dr McKenna notes that Mrs O’Shea will be assessed with regard to appropriate
safety measures as a matter of urgency and will be seen at home by the primary
care services. He explains to her daughters that Mrs O’Shea is entitled to make
her own decisions about where and how she will live even if those decisions seem
unwise to others. Dr McKenna also states that both he and they should support
her as much as possible in this regard. The meeting ends without agreement, with
both daughters threatening to hold Dr McKenna responsible if their mother is
injured. Dr McKenna documents the discussion noting the concerns raised by Mrs
O’Shea’s daughters and his own reasoning. He seeks a further meeting with Mrs
O’Shea’s daughters at a later date to try and further allay their concerns.
2.4 Intervention is not always required
Principle:
There There
shall beshall
no intervention
in respect ofinthe
personsofunless
it is necessary
to do
so
Section 8(5):
be no intervention
respect
the persons
unless
it is
having
regard
to
the
individual
circumstances
of
the
persons
(S.8
(5)).
necessary to do so having regard to the individual circumstances of the relevant
person
An intervention in relation to a relevant person means any action taken, direction
given or any order made in respect of a relevant person under the 2015 Act by the
courts, by health and social care professionals or under any of a range of formal
agreements that the relevant person enters into (depending on the level of support
25
they require from someone else to make their own decisions) and by the Director of
the Decision Support Service.
This principle means that concern about a relevant person’s capacity to make a
decision or a finding that someone lacks capacity to make a decision does not
necessarily mean that there is a need for intervention or that an intervention is
necessary or appropriate in the circumstances. Whether or not an intervention is
possible, necessary and appropriate will depend upon the individual circumstances
of the relevant person.
Example 4
Mr Roche is a 40 year old man with a history of bipolar disorder. He sees his
psychiatrist and his GP regularly. Mr Roche decides to spend €10,000 of his
savings on a camper van to travel around Ireland for six months. His GP, while
noting that Mr Roche has no current mental health problems, is concerned that it
will be difficult to give Mr Roche continuous support and treatment while
travelling, and that his mental health might deteriorate as a result. Mr Roche
explains that this has always been an ambition of his and that he thinks it will be
good for him. His GP remains unconvinced and thinks maintaining continuity of
care would be a wiser option, but he respects Mr Roche’s right to make his own
decision, and agrees to work with him on back-up plans in case any problems
arise on the trip.
2.5 Any intervention should be as limited as possible
Principle: 8(6):
An intervention
in respect
the person
be made
in a way
Section
An intervention
in of
respect
of ashall
relevant
person
shall –




thatBe
minimises
on the
person’s
rights and freedom of action
(a)
made restriction
in a manner
that
minimises
has due (i)
regard
the need toof
respect
the right of
the person
to dignity,
Thetorestriction
the relevant
person’s
rights,
and bodily integrity, privacy
autonomy,
and
control
over
their
financial
affairs
and
property
(ii) The restriction of the relevant person’s freedom of action.
is
proportionate
to the significance
andto
urgency
of the
thethe
subject
of theperson
intervention
(b) Have due regard
to the need
respect
thematter
right of
relevant
to
is asdignity,
limited inbodily
duration
in
so
far
as
is
practicable
integrity, privacy, autonomy, and control over his or her
financial affairs and property,
(c) Be proportionate to the significance and urgency of the matter the subject of
the intervention, and
(d) Be as limited in duration in so far as is practicable after taking into account
the particular circumstances of the matter the subject of the intervention.
26
Any intervention should be as limited, both in effect and in duration, as is possible,
and the rights of the relevant person, including the right to bodily integrity and to
autonomy, remain important. This places an obligation on health and social care
professionals to consider alternatives to a proposed intervention. This may
sometimes require that a less convenient intervention is adopted because it is less
restrictive of a relevant person’s rights and freedom of action.
There may sometimes be a temptation, especially when further decline in decisionmaking capacity seems likely, to seek to assess a relevant person’s capacity and
make a determination as to capacity at that earlier stage in order to forestall the need
for further interventions (assessments) at a later stage when capacity has declined.
This is not permitted under the 2015 Act as an assessment of a relevant person’s
capacity to make a decision on a particular matter can only be made at the time
when it is necessary to make that decision and not at any other time.
Example 5
Jim has been assessed as having a severe intellectual disability1 and an unpredictable
form of epilepsy that is associated with drop attacks, where there is a sudden loss of
muscle tone and a collapse to the ground (also known as an atonic seizure). This can
result in serious injury and a neurologist has advised that this places Jim at serious risk.
After assessment with a multidisciplinary team, it is decided that Jim lacks capacity to
decide on the most appropriate course of action he needs to take for himself.
The first draft of Jim’s care plan states that Jim should be closely supervised at all times.
However, staff in the care home where Jim lives point out that Jim loves to spend time in
the garden on his own and does not like to be too closely observed. Jim’s parents, who
visit him every day, agree. Following a meeting between staff, Jim and Jim’s parents, it is
agreed that a less restrictive option is to provide Jim with a helmet as this will enable him
to go out and spend time in the garden, while at the same time minimising the risk of
harm.
_______________________
1
Severe intellectual disability is the language used in the National Intellectual Disability Database in the
Health Research Board
27
2.6 Essential considerations when making an intervention
Principle 8(7): The intervener, in making an intervention in respect of a relevant
person, shall (a) permit, encourage and facilitate, is so far as is practicable, the relevant
person to participate, or to improve his or her ability to participate, as fully
as possible, in the intervention
(b) give effect, is so far as practicable, to the past and present will and
preferences of the relevant person, in so far as the will and preferences
are reasonably ascertainable
(c) take into account (i) the beliefs and values of the relevant person (in particular those
expressed in writing) in so far as those beliefs and values are
reasonably ascertainable, and
(ii) any other factors which the relevant person would be likely to
consider if he or she were able to do so, in so far as those other
factors are reasonably ascertainable
(d) unless the intervener reasonably considers that it is not appropriate or
practicable to do so, consider the views of
(i) any person named by the relevant person as a person to be consulted
on the matter concerned or any similar matter, and
(ii) any decision-making assistant, co-decision-maker, decision-making
representative, or attorney for the relevant person
(e) act at all times in good faith and for the benefit of the relevant person, and
(f) consider all other circumstances of which he or she is aware and which it
would be reasonable to regard as relevant
This principle has a number of important implications when considering whether to
intervene, and what intervention to make, when a relevant person lacks the capacity
to make a decision.
2.6.1 The past and present will and preferences of the relevant person are extremely
important
The first enquiry to make (i)
If a relevant person’s capacity is in question, the health and social care
professional should ascertain if the relevant person has the support of a
decision-making assistant or a co-decision-maker in relation to the
particular decision to be made. If the answer is yes, then the support of
that person should be sought.
28
(ii)
If a relevant person lacks capacity to make a decision, the health and
social care professional should ascertain if the person has made an
enduring power of attorney or an advance healthcare directive in relation
to the decision in question. If so, then the relevant person’s wishes as set
out in such a document must be followed. (A registration process is
necessary for an enduring power of attorney to come into effect).
Even if someone is judged to lack capacity to make a particular decision, their past
and present wishes and any evidence (particularly in writing) of their beliefs and
values:
1. should be sought if that is possible and
2. have great significance in determining what, if any, intervention should be
made.
A situation sometimes arises in health and social care where a relevant person who
is judged to lack capacity to make a decision has a clear preference for an option
that is regarded as unwise by health and social care professionals and/or by those
close to them. It is important to ascertain if the relevant person needs more
information to help them understand the consequences of the decision. However,
the views of the relevant person cannot simply be disregarded in these
circumstances. The 2015 Act requires that an intervener shall ‘give effect, in so far
as is practicable’ to the will and preferences of the relevant person. It is therefore a
very serious step to seek to override the relevant person’s expressed preference, or
to coerce him or her to receive an intervention or treatment he or she does not wish
to have. This is even more so if the relevant person’s present preference is
consistent with his or her prior preferences and with what is known of his or her
beliefs and values. It is essential in these circumstances that the relevant person is
encouraged and facilitated to access support, for example an independent advocate,
to enable him or her to challenge any decision to override his or her expressed will
and preference and to coerce him or her to receive an unwanted intervention or
treatment.
29
Example 6
Mary who is 27 years old has an intellectual disability. Her sister brings her to Dr
Bay’s surgery for a smear test to screen for cervical cancer. However, Mary
adamantly refuses to undress and to have the test performed. Her sister is very
upset, noting that their mother died of cervical cancer which places them both at
increased risk for the condition. She says to Dr Bay: ‘But you can see she doesn’t
understand – can you not do something’. Dr Bay agrees that Mary probably lacks
decision-making capacity to understand and weigh the information about the
reason for testing and to make her own decision about the test. He notes,
however, that it would be impossible to force Mary to undergo an intimate
examination and illegal even to try. He suggests that Mary and her sister return to
see his female partner in case that might prove more acceptable to Mary but also
notes that it might not prove possible to perform the test.
2.6.2 Take into account the beliefs and values of the relevant person
The 2015 Act stresses that every effort must be made to understand what a relevant
person’s own approach would be to the decision to be made if he or she had the
capacity to make the decision without assistance. Therefore if there is difficulty in
ascertaining the relevant person’s past and present wishes, there is still a
requirement to understand what the relevant person’s beliefs and values might be
and also to try to ascertain what other factors the relevant person might be likely to
consider if he or she was able to do so in so far as those factors are reasonably
ascertainable. Relatives, friends and carers might have information that can be
helpful in this regard. For example, the religious beliefs of a relevant person might be
very important with regard to what his or her approach might be to a medical
intervention and treatment at end of life.
2.6.3 People to be consulted if appropriate and practicable
Where the relevant person has appointed someone to provide decision-making
support under the 2015 Act, every reasonable effort should be made to ensure that
the support is available to the relevant person as required. The 2015 Act also
requires that, unless it is not appropriate and/or practicable, a person making an
intervention must consider the views of anybody named by the relevant person as
someone to be consulted on the decision, anyone with decision-making authority for
other decisions, carers and health and social care professionals and others with ‘a
bona fide interest in the welfare of the relevant person’. This kind of consultation may
be especially valuable in helping to ascertain the past and present will and
preferences of the relevant person. It may not be appropriate to consult a particular
person for reasons of privacy or confidentiality.
30
2.6.4 Act in good faith and for the benefit of the person
The relevant person must always be central to any intervention and anyone making
an intervention (which includes health and social care professionals) must act in
good faith and for the benefit of the relevant person.
‘Benefit’ should be interpreted broadly and in line with the other principles relating to
interventions:
 It does not just mean what a health or social care professional or others
consider being of benefit or in the ‘best interests’ of a relevant person.
 It does not just mean ‘safety first’.
 Instead, what is in a relevant person’s benefit must be interpreted in light of
that person’s past and present will and preferences and his or her beliefs and
values. What is (or is not) of benefit to a relevant person is unique to that
person and should be understood in this way.
Where the health and social care professional does not have any information about
the relevant person’s will and preference, beliefs or values, and there is no person to
assist with such information, he or she may have to make a judgment call to decide
whether it is of benefit to the relevant person to intervene or not. This decision will be
informed by the clinical/professional skill and experience of the health and social
care professional. In such situations, it would be good practice to discuss the matter
with other members of the multidisciplinary team.
2.6.5 Consider other relevant circumstances
Any intervener working is also obliged to consider other circumstances of which the
intervener is aware and which it would be reasonable to regard as relevant. For
example, a relevant person may wish to go home from residential care. However, the
intervener may be aware that when at home, the relevant person resides with a
family member who has been extremely abusive to the relevant person. This has
required the involvement of the safeguarding team on a number of occasions in the
past year. Such circumstances are relevant for the intervener and the multidisciplinary team to consider when determining if the relevant person should return
home.
2.6.6 Summary – Steps for an intervention
A health and social care professional in making an intervention in respect of a
relevant person must:
 Permit, encourage and facilitate the relevant person to participate
31





Give effect in so far as practicable to the will and preferences of the relevant
person
Take into account the beliefs and values of the relevant person in so far as
reasonably ascertainable
If appropriate, consider the views of others nominated by the relevant person
Act at all times in good faith and for the benefit of the relevant person
Consider other circumstances which it would be reasonable to regard as
relevant
Example 7
Bill lives in a nursing home and has significant communication and swallowing
difficulties since a stroke. It has been recommended that he should take a pureed
diet to minimise the risk of aspiration pneumonia. However, Bill hates the pureed diet
and despite consultation with a dietician isn’t taking sufficient nutrition as a result.
Staff in the nursing home talk to Bill’s family who confirm that he has always been a
fussy eater. Following consultation with the multidisciplinary team, staff and family
agree that Bill reduction in intake reflects a preference for a less modified diet and
places him at high risk for malnutrition and that the pureed diet is worsening his
enjoyment of food and his quality of life. Even though it involves a risk of serious
harm and even death, providing a less-modified diet more to Bill’s liking will improve
his quality of life and his nutritional status and be to his overall benefit.
Consider including all practical supports to mitigate the risk of choking or aspiration
i.e. positioning, drinks, assistance and supervision at meal times, fortified drinks to
support nutrition, communicate and compromise
2.7 Other people whose views may be helpful
Section 8 (8) – The intervener, in making an intervention in respect of a person, may
consider the views of (a)
(b)
(c)
any person engaged in caring for the relevant person
any person who has a bona fide interest in the welfare of the person, or
healthcare professionals
The 2015 Act requires that certain people must be consulted when an intervention is
being made, unless it is not appropriate and or practicable to do so (see 2.6.2). The
views of other people such as family members, carers, health and social care
professionals and others with a genuine interest in the welfare of the relevant person
may also be helpful, for example in ascertaining the relevant person’s past will and
preferences and beliefs and values.
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2.8 Respecting the privacy of the relevant person
Section 8 (10) – the intervener, in making the intervention in respect for a relevant
person (a) shall not attempt to obtain relevant information that is not reasonably required
for making a relevant decision
(b) shall not use relevant information for a purpose other than in relation to a
relevant decision, and
(c) shall take reasonable steps to ensure the relevant information:
(i) is kept secure from authorised access, use or disclosure, and is safely
disposed of when he or she believes it is no longer required.
(ii) Is safely disposed of when he or she believes it is no longer required
It has already been noted that any intervention should be the least restrictive
possible in the circumstances. The same principle applies to information obtained in
relation to making a decision. Therefore:
 Only information relevant to the decision should be sought
 Information should only be used in relation to the particular decision
 Information should only be accessed by, and accessible to, those involved in
making an intervention
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3. FUNCTIONAL CAPACITY – CRITERIA FOR ASSESSING
CAPACITY
The 2015 Act requires that a person’s capacity is to be construed functionally and
sets out the criteria for assessing a person’s capacity using this approach. This
section explains functional capacity and provides guidance on how health and social
care professionals should assess a person’s capacity and what they should take into
consideration in this regard.
3.1 What is ‘functional’ capacity?
The 2015 Act states that, when using a functional approach:
“[A] person’s capacity shall be assessed on the basis of his or her ability to
understand, at the time that a decision is to be made, the nature and
consequences of the decision to be made by him or her in the context of the
available choices at that time.”
Functional capacity is therefore:
1. Issue-specific - Capacity is assessed only in relation to the decision in
question. A judgement that someone lacks decision-making capacity in
relation to one issue does not have a bearing on whether decision-making
capacity is present in relation to another issue.
2. Time-specific - Capacity is assessed only at the time in question. A
judgement that someone lacks decision-making capacity at one time does not
have a bearing on whether decision-making capacity in relation to that issue is
present at another time.
3. Dependent on how a relevant person makes a decision and not the nature or
wisdom of that decision.
The functional approach to capacity has the benefit of facilitating people to make
their own decisions whenever possible and minimises the restriction on an
individual’s decision-making autonomy. It also means that there are no ‘short-cuts’
for assessing capacity.
3.2 When does a person lack the capacity to make a decision?
Section 3(2) of the 2015 Act states “A person lacks the capacity to make a decision if
he or she is unable—
34
(a) to understand the information relevant to the decision, and to retain that
information long enough to make a voluntary choice, and
(b) to use or weigh that information as part of the process of making the
decision, and
(c) to communicate his or her decision (whether by talking, writing, using sign
language, assistive technology, or any other means) or, if the
implementation of the decision requires the act of a third party, to
communicate by any means with that third party.”
If a person is unable to undertake any one of the four processes outlined above,
then he or she will lack the capacity to make that decision.
Functional Capacity – A helpful way to remember the requirements
There are 4 questions to be answered when considering if a person may lack the
capacity to make a decision. The word CURB may be useful for remembering these:
 Communicate (C) - Can the person communicate their decision in some way?
 Understand (U) - Can they understand the information given to them?
 Retain (R) - Can they retain the information given to them long enough to
make a choice?
 Balance (B) - Can they use, weigh up or balance that information as part of the
process of making the decision?
Adapted from RCGP Mental Capacity Act (MCA) Toolkit
3.2.1 Understanding the information relevant to the decision
Section 3(3) of the 2015 Act states that “A person is not to be regarded as unable to
understand the information relevant to a decision if he or she is able to understand
an explanation of it given to him or her in a way that is appropriate to his or her
circumstances (whether using clear language, visual aids or any other means).”
Much of health and social care involves the provision, and exchange, of information
between those who provide services and care, and relevant persons. In health and
social care, provision of information and mutual communication often arises in the
context of seeking consent from a relevant person for an intervention. In general,
information must be provided to the relevant person about the benefits and risks of
different options and the possible consequences of failing to make a decision.
Section 3(7) of the Act states “Information relevant to a decision shall be construed
as including information about the reasonably foreseeable consequences of—(a)
35
each of the available choices at the time the decision is made, or (b) failing to make
the decision.”
The level of understanding required must not be set too high. A broad, general
understanding of the most essential points in a relevant person’s individual
circumstances is all that is required. A relevant person is not required to understand
minor details. A relevant person whose capacity is in question should not be asked
more of than of someone whose capacity is not in doubt.
The amount of information and how it is provided must be tailored to the
circumstances and preferences of the relevant person. People who are very sick or
who have difficulty making a decision or communicating their decision may not be
able to understand and assimilate a lot of information. Therefore, it may be
necessary to pare down the information to the absolute essentials.
Information must be provided in a manner that is understandable to the relevant
person and at a time and in a place that maximises the chances that he or she will
be able to make his or her own decision. It may be necessary, if the circumstances
allow, to provide information and support over a period of time in order to build
decision-making capacity (the decision-making supports and approaches that are
often necessary and helpful in this regard are discussed in detail in 2.2). The onus is
on the assessor not only to give information in a comprehensible manner but also to
set out the options that the relevant person may choose between.
What level of understanding is needed?
A judgement from a UK case provides a useful summary: Heart of England NHS
Foundation Trust v JB, Judge Peter Jackson EWHC 342 (COP)
“”What is required here is a broad, general understanding of the kind that is
expected from the population at large. [A person] is not required to understand every
last piece of information about her situation and her options: even her doctors would
not make that claim. It must also be remembered that common strategies for dealing
with unpalatable dilemmas – for example indecision, avoidance or vacillation – are
not to be confused with incapacity. We should not ask more of people whose
capacity is questioned than of those whose capacity is undoubted.”
In another English court decision, the court held that when considering the tests for
capacity, the correct interpretation was that the person must comprehend and weigh
the salient details relevant to the decision to be made; it was not necessary for a
person to comprehend all peripheral details and that it should be recognised that
different individuals may give different weight to different factors. [ LBL v RVJ and VJ
[2010] EWHC 2665 (COP)]
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Example 8
Mr Franks, who has an intellectual disability, was admitted with abdominal pain
due to gallstones. His surgeon, Mr Thompson, was concerned that Mr Franks
might not have the capacity to make his own decision about the operation. He had
a talk about this with his colleague, Miss Smith, and explained that he had written
a brief information leaflet with illustrations about this operation and that his
standard approach was to go through this leaflet, which explained the pros and
cons of surgery, with his patients. Miss Smith suggested that this approach, while
likely to be helpful for many people, might not be the right one for Mr Franks. She
and Mr Thompson agreed that the essential bits of information that Mr Franks
would need to understand were: that an operation was required to prevent serious
complications due to gallstones; that he would be asleep and would not
experience any pain or awareness during the operation; some discomfort was
common after surgery but that pain relief would be provided; that wound infection
requiring a course of antibiotics was the most common complication of surgery;
and that serious complications of surgery and anaesthesia could occur but were
rare. Using this approach, Mr Thompson obtained what he was satisfied was a
valid consent to proceed with surgery.
3.2.2 Retaining the Information
Section3(4): The fact that a person is able to retain the information relevant to a
decision for a short period only does not prevent him or her from being regarded as
having the capacity to make the decision.
Relevant persons may not be able to remember the information provided – or even
to remember having made a particular decision – even a short time later. The
determination of capacity cannot be reduced to a memory test and the retention of
information even for a very short period of time does not prevent him or her from
being regarded as having the capacity to make the decision.
What matters is that a person can retain the information long enough to be able to
use and weigh the information to reach and communicate a decision. Where a
person with memory difficulties needs time to make a decision, memory aids,
including writing down information, using prompts or providing a sound recording,
may be useful.
37
Example 9
Mrs Blair had been suffering from severe pain following a fall which fractured her
hip and was admitted to hospital to have her hip repaired. The night before
surgery, the registrar Mr O’Brien explained the benefits and risks of the operation
to her and Mrs Blair, noting that the pain was terrible and was keeping her awake
at night, consented to the procedure. When he saw her again the next morning, Mr
O’Brien was alarmed that she had no recollection of who he was or of their prior
discussions. He discussed the operation with her once more, and again she
understood the pros and cons and noted that she was keen to proceed because of
the severity of the pain. On reviewing her case-notes, Mr O’Brien discovered that
she had received a lot of analgesia overnight because of pain and concluded that
the medication had interfered with her ability to retain the previous evening’s
discussion. In any event, he was satisfied that her consent that morning was valid.
3.2.3 Using and weighing the information
The relevant person who is being asked to make a decision will need to use and
weigh information relevant to the decision – to ‘reason’ with that information – in
order to reach their own decision. That decision should be guided by the relevant
person’s personal values, beliefs and goals. People are the experts in determining
what ‘ends’ matter to them, including how they should live their everyday lives,
decisions about risk‐taking and preference for privacy or non‐interference.
The weight to be attached to information is for the relevant person to decide.
Making a decision that is regarded as unwise, or having idiosyncratic or unusual
belief systems, are not of themselves evidence that the relevant person’s ability to
reason is impaired.
Many people will be unfamiliar with, or daunted by, having to explain their reasoning.
It is the duty of the health and social care professional to help people to explain their
reasoning, for example by eliciting their values and beliefs.
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Example 10
Mrs Clarke lives alone with her dog and has dementia. Recently she has had some
falls and she forgot to press her personal alarm. She has also become lost in her
locality. She is adamant that she wants to remain at home. Concern is raised
about her capacity to make her own decision in this regard. On discussion, Mrs
Clarke acknowledges that her memory has become poor and that this is creating
risks for her at home. She declares that she would rather die from a fall at home
than move to a nursing home. She also reports that she is devoted to her dog who
sleeps in the bed with her. It is concluded that Mrs Clarke does have capacity to
decide for herself and has been able to weigh up different options. Her decision to
value being with her dog over her personal safety is one that not everyone would
make but does reflect her values and her individuality. The health and social care
professionals, in respecting Mrs Clarke’s wish to live at home, assist her to access
care supports to enable her to be at home.
3.2.4 Communicating a decision
Relevant persons who access health and social care services may have difficulties
communicating or in being understood because of, for example, cognitive
impairment or disability, limited English language proficiency or because they are
deaf or hard of hearing. In spite of apparent communication difficulties, every effort
must be made both in communicating information and in facilitating the relevant
person to communicate his or her decision.
Particular challenges may arise where a person communicates largely or wholly in a
non-verbal way, perhaps through facial expressions or changes in behaviour. In
these circumstances, necessary efforts may require involving speech and language
therapists and people with expertise in non-verbal communication. A person’s family
members, friends and carers may also be able to help in interpreting what a person
is trying to communicate especially where he or she does not communicate verbally.
While the Act provides that every effort must be made to assist the relevant person
to communicate his or her decision, it also recognises if the relevant person is
unable to communicate by any means, he or she will be deemed to lack the capacity
to make the decision.
39
Example 11
Mr Murphy is brought into hospital following a traffic accident. He is conscious but in
shock. He cannot speak and is clearly in distress, making noises and gestures. From
his behaviour, staff members in the hospital conclude that Mr Murphy currently lacks
the capacity to make decisions about treatment for his injuries, and they give him
urgent treatment. They hope that after he has recovered from the shock they can
use an advocate to help explain things to him. However, one of the nurses thinks she
recognises some of his gestures as sign language, and tries signing to him. Mr
Murphy immediately becomes calmer, and the doctors realise that he can
communicate in sign language. He can also answer some written questions about
his injuries. The hospital brings in a qualified sign-language interpreter and, with the
interpreter’s assistance, they are able to conclude that Mr Murphy has the capacity
to make decisions about any further treatment.
3.3 Capacity is time-specific
Section 3(5) The fact that a person lacks capacity in respect of a decision on a
particular matter at a particular time does not prevent him or her from being
regarded as having capacity to make decisions on the same matter at another
time.
This reflects the fact that decision-making capacity can fluctuate in relevant persons.
For example, repetition and better communication may lead to improved
understanding by the relevant person. Alternatively, the ability to make a decision
may fluctuate depending on the time of day - those with delirium (acute confusion
due often to illness or medications) are often at their best in the daytime and worse
at night, and delirium often resolves with treatment after a few days. In such
situations, decisions should be discussed during more lucid periods or deferred if
possible.
Example 12
Mr Jones, a known heroin user, is brought to the Emergency Department at 23.00
unconscious following an overdose. Following emergency treatment, he wakes up
but remains incoherent and unclear of his whereabouts. He is somewhat belligerent
and asks to leave but staff determine that he lacks capacity to make that decision. A
security guard remains with him. He falls asleep at about 02.00. His ability to make a
decision is much improved when he is reviewed by staff at 07.00. He states he
wishes to leave the Emergency Department and acknowledges that his intention is to
obtain more drugs. Staff try without avail to persuade him to remain for further
treatment but conclude that he now has capacity to decide for himself. They
document this and Mr Jones leaves the hospital.
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3.4 Capacity is issue-specific
Section 3(6) The fact that a person lacks capacity in respect of a decision on a
particular matter does not prevent him or her from being regarded as having
capacity to make decisions on other matters.
Capacity is decision-specific. Some decisions are more complex and careful
consideration needs to be given to the level of assessment that needs to be carried
out. More formal assessments may be required for some decisions or where there is
disagreement as to capacity, including who should be involved in the assessment,
and the level of support the relevant person may require. However, the final decision
about the relevant person’s capacity must be made by the person who intends to
make the decision on behalf of the relevant person. If there is a disagreement
regarding a relevant person’s capacity and it cannot be resolved, ultimately the court
has the jurisdiction to make a declaration as to whether the relevant person has, or
lacks, capacity to make the decision. Relevant persons must be facilitated to make
any decisions that they can, and finding that someone lacks capacity in respect of
one decision should not alter the presumption of capacity for a different decision.
General or ‘blanket’ assessments of a person’s capacity are not consistent
with the functional approach to capacity in the 2015 Act and should not be
made. Capacity is issue-specific, which has the benefit of facilitating people to make
their own decisions whenever possible and minimises the restriction on a person’s
decision-making autonomy. This also means that no ‘short-cuts’ for assessing
capacity are possible: assessment must be based on the actual decision that a
relevant person faces and not on an overall basis.
41
What if the capacity of a relevant person fluctuates?
As the assessment of capacity is based on a functional approach i.e. issue
specific and time specific, the onus will be on the person who decides to carry out
the assessment to prove that they took all practicable steps to support the person
to make their own decision and that this was unsuccessful.
If decision-making capacity fluctuates it may be possible to defer making a
particular decision in order to take advantage of a relatively lucid period, or to
allow for resolution of delirium (acute confusional state), to allow the relevant
person to make his or her own decision.
In other cases, the fact that the relevant person’s decision-making capacity can
fluctuate may itself be an important piece of information that the relevant person
needs to understand in order to reach a decision. For example, some people with
dementia may experience night-time worsening of symptoms (‘sundowning’)
leading to problems such as wandering and he or she may not recall these
difficulties the next day. It is important when discussing the need for additional
night-time supports with such people that they understand that their decisionmaking capacity, cognitive problems and consequent behaviours do fluctuate and
that it is better for this discussion to takes place in the morning.
Example 13
Mrs White, who has moderate dementia, is ready for discharge home, but a safe
discharge will require modifications to the house that she will have to pay for
herself. The issue of whether she has capacity to make this financial decision is
raised. Dr Hayes visits Mrs White to discuss the decision with her but finds her so
disoriented and drowsy that a coherent discussion is impossible. Ward staff
inform Dr Hayes that Mrs White is often much better than at present and that she
tends to be more confused in the afternoon or if she hasn’t had a good night’s
sleep or if she has had a strong painkiller for her intermittent back pain. It is
decided that Dr Hayes will defer any discussion or formal assessment until a time
when Mrs White is at her best and most likely to be able, with support, to make
her own decision.
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4. FUNCTIONAL CAPACITY – PRACTICAL ISSUES
4.1 Introduction
The guiding principles of the 2015 Act provide a statutory obligation on health and
social care professionals to support people who may have difficulty making and
communicating decisions. It also provides that, insofar as is possible, the relevant
person’s will and preferences are respected and his or her beliefs and values are
taken into account even when he or she has been found to lack decision-making
capacity. Where the relevant person’s capacity is in question, all practicable supports
to facilitate decision-making should be provided.
Any unnecessary capacity assessments and findings of lack of capacity, or
unnecessary interventions, contravene the Act. The starting position for health and
social care professionals when a relevant person is facing a decision must be: ‘Is
there anything I can do to help the person make, communicate and implement their
own decision?’ and not ‘Might this person lack capacity to make the decision?
Health and social care professionals may have a reasonable belief that a relevant
person lacks the capacity to make a decision. However, if this belief is challenged,
either by family members or another health and social care professional, they will
need to be able to state the reasons why they believe the person lacks capacity
based on the criteria set out in the Act.
There is a need for objectivity in capacity assessments, as usefully described by
Justice Baker who warned against what he called the ‘protection imperative.’ In
cases of vulnerable adults he said: “there is a risk that all professionals involved with
treating and helping that person – including, of course, a judge … – may feel drawn
towards an outcome that is more protective of the adult and thus, in certain
circumstances, fail to carry out an assessment of capacity that is detached and
objective.” (CC and KK v STCC [2012] EWCOP)
4.2 When should capacity be assessed?
Health and social care professionals may be, or may become aware of factors that
might make decision-making or communicating a decision more difficult for a
relevant person. In these circumstances health and social care professionals must
seek to support and assist decision-making by asking - ‘how can I best assist this
person to make their own decision’.
In most cases, efforts to support a relevant person to make his or her own decision
will be successful without any need to consider the formal range of options in the
43
Act. If, however, it is thought that the use of these options might be needed, a formal
capacity assessment may be indicated.
In some cases, a formal assessment is required by the 2015 Act, for example when
a relevant person is making an enduring power of attorney and again when an
application is being made to register the enduring power of attorney.
An application to the Director of the Decision Support Service for the registration of a
co-decision-making agreement must be accompanied by a statement by a medical
practitioner or by another health and social care professional that the relevant person
has capacity to enter into the co-decision-making agreement.
The guiding principles of the 2015 Act suggest two conditions must be met before a
formal capacity assessment is warranted:
1. An adequate ‘trigger’ or reason has been identified; and
2. An intervention would be possible and proportionate in the individual
circumstances
4.2.1 An adequate reason or ‘trigger’ exists
The need for a valid reason or trigger before challenging capacity follows from the
principle of the presumption of capacity (see 2.1). Calling a person’s capacity to
make a decision into question is a serious matter, and there must a good reason for
doing so. If a health and social care professional is considering challenging a
person’s capacity to make a decision, the onus is on that professional to show that
an adequate trigger exists to challenge the presumption of capacity (which includes
going through the steps in the process without success – see 3.2).
The principle that ‘A person shall not be considered as unable to make a decision ....
merely by making, having made, or being likely to make an unwise decision’ is
relevant when considering what might constitute a valid trigger. Thus, the fact that a
relevant person is making an unwise choice – in practice, often one that that health
and social care professionals or those close to the person feel is unsafe – is not of
itself an adequate reason to challenge that person’s capacity to make that decision.
However, if a relevant person makes one or more ‘unwise decisions’ that seem out
of character, inconsistent with their known will and preferences or previously
expressed wishes, it may be indicative of being unable to make a decision.
Factors that should be taken into account when deciding if there is a valid reason for
formal capacity assessment where the person’s decision-making capacity is known
to be in question, or suspected to be in question are:
44
•
Is the decision important/complex?
Important decisions would include those that that may have serious
consequences for the person, such as whether to have major surgery, a
decision that would be irreversible, or selling or gifting a property. Personal
factors will also determine which decisions are important and/or complex for
an individual. Making complex decisions does require managing a good deal
of information and self-awareness.

Are there concerns about the choice that a relevant person is making?
Choices that would reasonably cause concern would include those that no
reasonable person in the relevant person’s situation would make, choices that
put the relevant person at significant risk of exploitation or choices that seem
inconsistent with the known preferences or values and goals of the relevant
person. It is also important to ensure that the relevant person is not being
unduly influenced or coerced into making a decision by any other person. In
using this trigger, it is essential to remember that an unwise decision is not of
itself evidence that the relevant person lacks capacity to make that decision
•
Are there, despite all necessary informal supports being provided, concerns
about the decision-making capacity of the relevant person?
Does a preliminary assessment, where there are concerns about the ability of
the relevant person to make a decision, suggest that he or she, despite all
efforts to facilitate understanding and decision-making, has difficulty
understanding, retaining or using and weighing information in order to reach a
decision?
It is impossible to produce defined rules given the variety of individual situations that
may arise. However, at a minimum, a valid trigger would require that the decision is
not trivial and that there is a significant concern either about the decision that is
being made or about the relevant person’s decision-making capacity.
45
Example 14
Mr Donnellan is a 67 year old man with poorly controlled type 2 diabetes and is
confined to bed due to being morbidly obese. Medical and nursing staff believe
that he has very little insight into his diabetes, the need to adhere to dietary
advice or the possible complications of his poor diabetic control. Instead, his diet
consists mainly of junk food and confectionary. He has now developed leg ulcers
and kidney disease. Mr Donnellan reported that despite his health problems he
had a good quality of life and had no intention of changing his ways as advised by
doctors and nurses. The issue of whether his lack of insight into his diabetes
suggests a lack of capacity to make his own decisions is raised at a meeting of
the primary team. It is decided, however, that this would not be an appropriate
avenue to explore. It was noted that there was no appropriate trigger for an
assessment. Although his lifestyle choices are having a serious impact on his
health, failure to comply with dietary advice was common in diabetics. Mr
Donnellan valued his current quality of life; and those who had known him a long
time confirmed that he had ‘always been that way’. It was also noted that there
was no reasonable, proportionate or practical intervention that could be made in
the circumstances.
4.2.2 An intervention would be possible and appropriate in the circumstances and of
benefit to the relevant person
Another general principle of the 2015 Act is that any intervention must be the least
restrictive of a person’s rights and freedom of action, be as limited in duration in so
far as is practicable after taking into account the particular circumstances and be
proportionate to the significance and urgency of the situation.
It is important to consider if an intervention is necessary or available before
considering a formal capacity assessment. There is no point or benefit in identifying
a lack of decision-making capacity for its own sake. There should be no intervention
(and hence no reason to identify a lack of decision-making capacity) unless it is
necessary to do so - that is, unless a finding of a lack of decision-making capacity
(for the particular decision) and any resulting actions will be of some practical value
in resolving a problem.
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Example 15
Mrs Kenny has severe dementia and anxiety and lives in a residential care unit. She
has significant arthritis of her hip which causes pain and restricts her mobility. Her
doctor feels she would benefit from a hip replacement. Mrs Kenny refuses but is
unable to explain why. Although staff and those close to her have doubts about her
capacity to agree to or to refuse the surgery, nobody feels that it would be
reasonable or practical to seek a court order to force Mrs Kenny to undergo surgery.
Her doctor documents this and medical treatment for her arthritis is continued.
4.2.3 Cognitive tests, tests to assess intelligence and capacity determinations
Cognitive tests (such as the Mini-Mental State Examination (MMSE) or the Montreal
Cognitive Assessment (MOCA)) and tests designed to assess intelligence (such as
IQ tests) do not determine and should not be used for assessing a person’s
decision-making capacity. Their use is:
•
•
Inconsistent with the issue-specific nature of the functional approach to
capacity. For example, the questions asked in some cognitive tests, such as
the day of the week or copying a design bear no relationship to any particular
decision and do not provide any useful information about the decision to be
made or whether or not the person has capacity to make any decision.
Inconsistent with the presumption of capacity if a relevant person’s results on
such tests below a particular cut-off are interpreted in effect as reversing the
presumption of capacity and result in the person being asked to demonstrate
that they have capacity to make a decision.
4.3 Who should assess capacity?
In keeping with the functional approach of capacity, the question of who should
assess capacity will depend on the particular decision to be made. In the context of
health and social care and treatment decisions, it is the health and social care
professional who needs the decision to be made. For example, where consent to
medical treatment or examination is required it will be the health and social care
professional who is suggesting the treatment that must decide whether the relevant
person has the capacity to consent to the treatment and he or she must assess the
relevant person’s capacity if this is necessary. This professional should have the
best knowledge of the reason(s) for (and against) the proposed intervention or
decision and of the perspective of the relevant person.
The health and social care professional who proposes to make an intervention may
seek the assistance of another health and social care professional and / or the
multidisciplinary team to carry out a formal assessment of capacity. However, if
47
such assistance is sought, the obligation still remains with the healthcare profession
who proposes making the intervention to satisfy him / herself whether or not the
relevant person has the capacity to make the decision.
4.4 What if there is disagreement about whether decision-making
capacity is present?
If there are conflicting views about whether decision-making capacity is present,
responsibility remains with the health and social care professional who proposes
making the intervention to satisfy him / herself whether or not the relevant person
has the capacity to make the decision.
A number of considerations may be helpful in such cases:
 The aim of the 2015 Act is to enable people to make their own decisions
rather than to identify lack of capacity and, a finding that someone has
capacity should outweigh one that someone lacks capacity.
 In the first instance it may be helpful to convene a multi-disciplinary team
meeting or case conference to discuss the case.
 In many cases, disagreement results from one health and social care
professional being more successful in finding a way to support decisionmaking or being in a position to assess the relevant person at a time when
they are best able to make their own decision.
 Although the 2015 Act does not recognise a hierarchy to assess a person’s
decision-making capacity, there may be significant differences in the
experience and skill of different health and social care professionals that
should be taken into account when weighing different judgements, including
their knowledge of the person.
 Discussion of the reason(s) behind disagreement may result in one health and
social care professional changing his or her opinion.
 Health and social care professionals should provide -and be prepared to
justify – an independent assessment of capacity.
 If there is a significant difference of opinion, as may occur in difficult cases,
then all assessments should be reviewed. In reviewing the different opinion as
to the capacity of the relevant person a number of points need to be
considered –
o Were the statutory criteria followed in each of the assessments? (See
Section 2)
o What elements of the decision-making process by the relevant person
was there disagreement about? Does the relevant person have a
general understanding of what decision he or she is being asked to
make? Is the relevant person able to understand the information and
weigh up the information relevant to the particular decision or require
further information? Does the relevant person have a general
48
o
o
o
o
understanding of the consequences of making or not making the
decision?
Was each assessment carried out at a time when the person was at his
or her highest level of functioning?
Were the best environment and supports available to the relevant
person at the time of the assessment?
Has consideration been given to assisting the relevant person to have
access to an independent advocate?
Does the assessor have the relevant skill (to include communication
skills), knowledge and expertise to carry out the assessment of a
relevant person?
Following the review and if there is still a difference of opinion then the person who
requires the decision to be made, either
 makes the decision acting in good faith and for the benefit of the relevant
person having followed the steps set out in 2.6.6 above, or
 if appropriate, decides that this is a matter that should be referred to the court
as the ultimate arbiter.
4.5 How should capacity be assessed?
If capacity to make a decision is in question and an intervention is necessary and
appropriate in the circumstances, it is important to establish if it is in fact necessary
to carry out a formal assessment. An assessment of a person’s decision-making
capacity can be intrusive and may be an interference with the person’s right to
respect privacy under the Guiding Principles set out in the 2015 Act. Therefore, it is
necessary to be able to justify the reason for an assessment.
At a minimum, formal capacity assessment requires the following:
4.5.1 Preparing for the assessment
• What is the decision?
The decision at issue should be identified.
• What is the information relevant to the decision?
The information about different options that the relevant person is required to
understand, retain, use and weigh up in reaching their decision should be
recorded.
• What is the reason for assessing capacity?
Are there concerns about the choice, if any, that a person is making?
Are there, despite providing all necessary supports, concerns about the ability
of the person to make the decision or to understand the consequences of not
making the particular decision?
49
•
What is planned if it is found that the relevant person lacks decision-making
capacity?
The nature and extent of any possible intervention will depend on the findings
of the assessment, but there should be some preliminary note of the options
that might be considered.
4.5.2 Before assessment / communicating with the person
 Discuss the decision that has to be made with the relevant person
 Does the relevant person understand that a question has been raised about
their decision-making capacity? – discuss this with the relevant person directly
 Is the relevant person able to understand that there are choices in relation to
the decision to be made?
 Does the relevant person need support or understand that they may need
support to make the decision?
 Has the relevant person named a person that he or she wishes to support or
assist them in making a particular decision?
 Has the relevant person made an enduring power of attorney or an advance
healthcare directive in relation to the specific decision?
4.5.3 Conduct of the assessment
The person conducting the assessment should be able to confirm that the following
factors were considered as far as possible and practicable in the particular
circumstances including:
• The best time of day to discuss the decision in question.
• The best location to discuss the decision in question.
• Whether it would be helpful and in accordance with the relevant person’s
wishes to have another person present.
• What steps have been taken to help the relevant person to understand
information applicable to the decision?
4.5.4 The assessment process
• Informing the relevant person about the assessment
The relevant person should be informed (using whatever communications
aids are needed) of the purpose and potential outcome of the assessment
and the manner of communication is very important. The fact that capacity is
being called into question will be upsetting for many people but this is not an
acceptable reason for not informing the relevant person that an assessment is
being made.
 Seeking the relevant person’s agreement to the assessment of capacity
• Provision of information
The relevant person must be provided with the relevant information during an
assessment process even if this has been done on previous occasions.
50
•
Assessing the four aspects of functional capacity: understanding, retention
and using and weighing of information and communication of a decision.
It is important that assessment of capacity and documentation of each of the
four steps is not a ‘check box exercise’: the verbatim comments of the person
should be recorded when relevant as should the assistance/support that was
given to the person concerned.
4.5.5 The outcome of the assessment
 The outcome of the assessment should be documented.
 The relevant person should be informed, in writing and verbally and in any
other way that best suits that the relevant person’s needs and preferences, of
the outcome of the assessment and of what is likely to occur as a result.
 The relevant person’s previous and current will and preferences and relevant
beliefs and values should be sought and documented.
 In the event of a finding that a relevant person lacks decision-making
capacity, he or she should be informed that the outcome of the capacity
assessment may be challenged. He or she should be facilitated to challenge
that outcome if he or she wishes.
4.6 How should a capacity assessment be documented?
If a formal capacity assessment is to be performed, the assessment, setting out the
steps taken to establish the relevant person’s capacity to make the decision, should
be documented by the person proposing to make the intervention.
The structure and extent of documentation will depend on the nature and
seriousness of the particular decision, including the possible consequences for the
relevant person of any choice they might make, whether or not the outcome of a
capacity assessment is likely to be contentious and on the urgency of the situation.
Documentation is particularly important if a decision is made that the relevant person
lacks decision-making capacity. Documentation is also important if the assessment
is challenged by either the relevant person themselves, by any other person, or if the
court is reviewing an assessment of capacity.
4.6.1 Is there a standard HSE form for documenting capacity assessments?
The 2015 Act applies to many different types of decisions and interventions related
to health and social care made in a large variety of settings. Furthermore, the nature
and extent of documentation required regarding capacity assessments will depend
on the particular decision. It is therefore not appropriate to require that all capacity
51
assessments be documented in the same way, or to the same extent, or using a
single form.
In some settings, it may be considered helpful to develop a form for documenting
formal capacity assessments and decisions. Appendix 2 shows an example of such
a form. It is essential, however, that capacity assessments should never be reduced
to a ‘box-ticking’ exercise. In particular, when there is a finding that a relevant
person lacks decision-making capacity, adequate detail of the assessment and the
assistance/support that was given, should be provided to justify the conclusions
reached (see 4.5). This can often include the verbatim comments of the relevant
person.
4.7 Refusal to have capacity assessed
Having one’s capacity called into question is likely to be upsetting and threatening for
the relevant person, and it is understandable that some relevant persons may be
unwilling or may refuse to participate in a formal assessment.
It is important that the concerns of such persons are heard and carefully considered.
A sensitive and careful explanation of the reason for assessment, depending on the
circumstances, an offer of support from someone close to the relevant person or an
independent advocate, and, whenever possible, allowing them time to consider the
matter by deferring the assessment will all be helpful.
The relevant person should be reassured that every effort will be made to facilitate
them in making their own decision. In most cases, it will also be possible to reassure
the relevant person that the purpose of assessment, even if a finding is made that he
or she lacks decision-making capacity, will be to provide support to allow his or her
will and preference to be implemented. However, there will be some cases where a
finding that the relevant person lacks decision-making capacity may give rise to
difficult practical implications for him or her. If the relevant person does not have
family or a trusted friend to assist him or her in questioning the assessment of
decision-making capacity, he or she should be assisted in appointing an independent
advocate either on an instructed or non-instructed basis. It would also be important
to ascertain if the relevant person has in fact appointed someone to act on his or her
behalf in relation to the particular decision in the event that there is a finding that the
relevant person lacks the capacity to make the decision personally. Also, it should be
explained to the relevant person and their decision-making supporter/independent
advocate that if there is a finding of a lack of decision-making capacity that he or she
has the right to question that determination. In these circumstances it would be
important to ensure that the relevant person has the appropriate support to assist
him or her in questioning the determination.
52
Example 16
Tom has been living in a residential centre for people with intellectual disabilities
since the death of his elderly mother a number of years ago. He was recently
diagnosed with early onset dementia. Up until now, he has been able to make
his own decisions about his daily life with the support of staff who gave him
appropriate information and explained it to him in a way that he could
understand it. Due to the dementia, he has become more confused recently and
decisions he could make before with support from staff are becoming
increasingly problematic. Tom does not seem to understand information given to
him or explanations of the consequences of decisions he is thinking about
making. The residential centre is due to close in the next year and Tom will have
to move out to live in the community. Staff need to discuss this with Tom in order
to plan for what accommodation option is most suitable for him based on his
expressed wish. However, based on recent communication with him, they are
concerned about his capacity to make the decision. They decide that an
assessment of his capacity to make the decision is appropriate and try
explaining to him why an assessment is necessary. Tom gets angry and says
that he does not want to be assessed or talk about it. Tom is close to his sister
Mary who is contacted by staff and she agrees to work with them in supporting
Tom. One morning a week later when Tom is at his most alert, Mary and his key
worker take Tom into the garden of the residential centre which they know he
loves and finds relaxing. The three of them sit on a bench. The key worker starts
explaining to Tom why an assessment of his capacity is needed and when Tom
looks worried, Mary reassures him that they want to support him to make his
own decision about the move and the assessment of capacity is not meant to
catch him out. Based on what Tom says, they realise that he is fearful that the
assessment would result in him being put in psychiatric care because he is
‘losing his mind’ due to dementia. After explaining to Tom why the assessment is
needed and where he might move to, he is reassured and agrees to be
assessed.
53
Assessing capacity – A brief checklist

Is it necessary to assess the capacity of this person to make this decision?

What is the decision at issue?

What is the information relevant to the decision?

What is the reason(s) for assessing capacity and challenging the presumption of
capacity?

What is planned if there is a finding of lack of capacity to make the decision?

Has every effort been made to support the relevant person’s decision-making?
o Best time and place for assessment
o Would the relevant person like someone else to be present?
o Any other measures?

Has the relevant person been informed of the reason for assessment?

Has the relevant person been provided with the relevant information?

Can the relevant person
o Understand the information?
o Retain the information long enough to reach a decision?
o Use or weigh up the information in reaching a decision?
o Communicate their choice?

Does the relevant person have capacity based on these four questions?

Has the relevant person been informed of the outcome of the capacity assessment?

If judged to lack capacity to make the decision:
o Has the relevant person’s will and preference been recorded?

Has the relevant person nominated any other person to act on his or her behalf in
relation to this decision?
o Is any planned intervention in accordance with the person’s will and
preference?

If a planned intervention is not in accordance with the relevant person’s will and
preference, has the person been informed of and facilitated to avail of a right of
appeal?
If the relevant person continues to refuse to consent to the assessment, a health and
social care professional may need to reach a conclusion regarding capacity despite
his or her refusal to participate. Refusal should not automatically lead to a conclusion
54
that the relevant person lacks decision-making capacity. The refusal, the reasons for
it, the efforts made to persuade the relevant person and any impact of that refusal on
the reliability of assessment should be documented. However, where the health and
social care professional has particular concerns with regard to the refusal of
assessment, an application can be made to the court. The 2015 Act provides that
the court has the power to make an interim order3 where the court has reason to
believe that the relevant person lacks capacity in relation to a matter and in the
opinion of the court it is in the interests of the relevant person to make the order
without delay. Legal advice should be sought if such circumstances arise.4
After carefully evaluating the situation, if the health or social care professional
considers that a relevant person does not have the capacity to consent to an
assessment of capacity, the assessment may proceed provided that the relevant
person does not object to the assessment. It is important that if the assessment is
being carried out, that the guiding principles are clearly followed and documented.
However, the 2015 Act provides that certain serious matters must come before the
court for determination where a person lacks capacity. This includes:
 the withdrawal of life-sustaining treatment where the relevant person has not
made an advance healthcare directive in relation to this matter.
 the donation of an organ from a living donor who lacks capacity.
 non-therapeutic sterilisation procedure to be carried out on a relevant person
who lacks capacity.
Legal advice should be sought in relation to these matters.
4.8 Emergency situations involving relevant persons who lack or may
lack decision-making capacity
4.8.1 Emergency situations and the necessity for immediate intervention
In some emergency situations the urgency of the intervention may be such that the
relevant person may lack decision-making capacity or be unable to appreciate what
treatment is required. In such circumstances the health and social care professional
may be unable (due to the urgency of the situation) to ascertain the relevant person’s
wishes with regard to the proposed treatment and may treat the relevant person
without obtaining consent and without formally assessing capacity provided:
3
An interim order is a temporary court order, intended to be of limited duration, usually just until the court
has had an opportunity of hearing the full case and make a final order.
4
Court Rules will be published which will set out the procedure to be followed in relation to an application to
court.
55
(1) the treatment is immediately necessary to save the relevant person’s life or to
prevent a serious deterioration of his or her condition and
(2) there are no grounds to believe that there is a valid advance healthcare
directive/advance refusal in existence or, if there is an advance healthcare
directive/advance refusal in existence, there is no immediate access to it.
The treatment provided should be the least restrictive of the relevant person’s future
choices. Where appropriate, it is good practice to inform those close to the relevant
person who may be able to provide insight into the relevant person’s likely will and
preferences. However, only someone with legal authority can give or refuse consent
on behalf of the relevant person in this situation.
Example 17
Mr Reid is 58 years old and has lived in a nursing home since a stroke left him
physically disabled requiring the use of a wheelchair two years earlier. He has
always, according to his family, had a ‘difficult’ personality. Since his stroke, he
has been angry and frustrated about his disability and often takes this out by
abusing staff. Previous assessment found no depression or cognitive impairment
and he has refused psychological support. One day the nurses on duty heard a
crash in his room and found he had toppled over from his wheelchair while
reaching for something in his locker. He was trapped awkwardly under the chair
on the floor. He didn’t seem to have hurt himself badly. When staff went to help
him up, he roared at them to ‘leave me alone’. The nursing staff explained to him
that they couldn’t leave him in that situation, and helped him back into his
wheelchair before asking him about any possible injuries.
4.8.2 Emergency situations and the practicality of an intervention
There are emergency situations where, even if a relevant person may lack decisionmaking capacity, an intervention is not practical or possible in the individual
circumstances (see 2.4).
Paramedics and Emergency Department staff, for example, may encounter people
who need care and are likely to have temporary incapacity due to alcohol or drugs
but who resist such care, sometimes in a violent manner.
These are very difficult situations and a number of factors warrant consideration:
 The likelihood that the person lacks decision-making capacity: this may be
high if the relevant person has an impaired level of consciousness and lower if
the relevant person appears intoxicated but is able to express themselves
clearly.
 The degree to which there is an immediate serious risk to life and health: this
may be high if the relevant person has a serious head injury and relatively low
if there appears to be mainly soft tissue injuries.
56

The practicality of intervening: in some circumstances, it may be impossible to
provide the necessary care, and attempting to do so may worsen the relevant
person’s agitation and distress and expose staff, and the relevant person, to
risk of harm. In other cases, intervention, even if requiring temporary restraint
and sedation, may on balance be the ‘least worst option’ if a potentially lifesaving intervention is needed.
It is acknowledged that health and social care professionals dealing with such
situations face great challenges in deciding the appropriate course of action and may
be subject to criticism whatever course of action they decide.
Example 18
Paramedics are called to a local nightclub where a young man who appears very
drunk has fallen and sustained lacerations to his scalp and face. They try to
persuade him to come in the ambulance to the Emergency Department where he
can have his injuries seen to, and explain clearly the potential consequences of
refusing transport. He refuses, curses at them and staggers down the street with his
friends. When appealed to by onlookers to intervene to stop him leaving, they
explain that there is no practical way of making him get into the ambulance or of
transporting him safely to hospital.*
*See National Ambulance Service Guidance Document: Patient Refusal of Care (Version 1.1,
Revised September 2014)
Example 19
A 999 call is received for a patient acting strangely at home. On arrival at the scene,
the two paramedics find a 52 year old male, acting in an abusive and belligerent
manner towards other family members. The 999 call was made by his sister. The
patient smells strongly of alcohol. His sister advises that he has a history of alcohol
abuse, with alcoholic liver disease. The patient says he is fine, that he doesn’t want
an ambulance. His sister says that this is not his usual demeanour and she is
concerned about him. She tries to convince her brother to go to hospital.
After being repeatedly being told to f*&k off, the paramedic crew request Garda
assistance. After a prolonged stand-off involving Gardaí, paramedics, the patient and
his sister, the patient is arrested by Gardaí and brought to the local Garda station to
“sleep it off”. The paramedics advise Gardaí that in their opinion the patient, although
intoxicated, has capacity and therefore competent to decline ambulance assistance.
He is found dead in the cell the following morning. Post mortem examination reveals
a sub-arachnoid haemorrhage.
57
4.8.3 Emergency situations and advance healthcare directives
In emergency situations where a relevant person lacks decision-making capacity and
has made an advance healthcare directive but the health and social care
professional is not aware of the existence of the advance healthcare directive, or the
health and social care professional is aware of its existence but has no immediate
access to the directive or its contents, then urgent treatment can be given to the
relevant person. Enquires should however be made as soon as possible as to the
existence of an advance healthcare directive. If there is an advance healthcare
directive in existence and can be made available, then its relevance to continuing
treatment must be considered.
Example 20
Mr Walsh was shopping in town when he suddenly developed weakness in his right
arm, right leg, the right side of his face and had difficulty speaking. A passer-by rang
for an ambulance and he was brought to the local hospital within a few minutes.
Investigations confirmed that he had had an ischaemic stroke. An attempt was made
to contact Mr Walsh’s wife but she was not at home and was not answering her mobile
phone.
The consultant physician Dr Gallagher was called to determine if administration of
thrombolysis (clot-dissolving medication) was indicated. Dr Gallagher agreed that Mr
Walsh seemed a suitable candidate for thrombolysis. Dr Gallagher explained to him
that thrombolysis reduces long term disability in stroke – about one out of every 7
people will have an excellent outcome that they wouldn’t have had otherwise.
However, about one of every 17 people treated with thrombolysis will have an
immediate symptomatic brain bleed they wouldn’t otherwise have had and in one of
every 37 people treated that bleed will be fatal. Although Mr Walsh nodded his
agreement to proceed with thrombolysis, Dr Gallagher was unsure how much of this
Mr Walsh could understand since he had a significant speech impairment affecting his
ability to express himself and possibly his comprehension also. Attempts to contact
Mrs Walsh had continued to be unsuccessful.
The benefits from thrombolysis s diminish with each passing minute, and the decision
to treat or not could not be deferred. Despite his uncertainty as to whether Mr Walsh’s
apparent agreement represented a valid consent and, since on balance treatment on
balance seemed to be of benefit to Mr Walsh, Dr Gallagher decided to proceed with
treatment. He documented the reasons for this decision.
58
An example of a report regarding capacity in a complex situation (based on Example
10)
Person: Mrs Yvonne Clarke Date of assessment: 14/11/2016
Frank Dunne, Consultant Geriatrician
Assessor: Dr
Decision in question: Can Mrs Clarke make her own decision regarding remaining in her
own home.
Relevant information: Mrs Clarke lives alone with her dog and has dementia. Recently
she has had some falls and forgot to press her personal alarm and has also become lost in
her locality. She is adamant that she wants to remain at home.
Options: 1. Remain at home in familiar surroundings but, even with optimal community
support, run a real risk of harm including death from falling or exposure. 2. Move to a
nursing home where her personal safety will be much greater but where Mrs Clarke may
be unhappy and may miss her dog.
Measures to assist in decision-making: I interviewed Mrs Clarke was interviewed over a
cup of tea in her own home with her dog’s head in her lap. The interview was conducted
in the morning which is when her friends and family report her to be at her best. I
presented the relevant information and the pros and cons of the options available to Mrs
Clarke. Mrs O’Brien, a friend and neighbour, was present at Mrs Clarke’s request.
Note: Mrs Clarke’s niece Ms Geraghty asked to be present at the assessment but, having
consulted with Mrs Clarke who said, while acknowledging that Ms Geraghty meant the
best and is the main beneficiary in her will, ‘she wants to put me in a home’, so I refused
this request. I met her in advance (with Mrs Clarke’s agreement), and Ms Geraghty was
strongly of the view that Mrs Clarke should enter a nursing home for the safety reasons
noted earlier.
Understanding: Mrs Clarke acknowledges that her memory has become poor but says
‘It’s not too bad - –I’m getting older now’. She is unable, because of her memory
impairment, to recall having fallen or getting lost. However, when Mrs O’Brien confirms
that these had occurred, she is happy to accept this - ‘I know you wouldn’t lie to me’.
Retention for long enough: Yes, long enough to process the information even though
she needed to be prompted to remember.
Using and weighing information: Mrs Clarke noted that she had always wanted to stay
in her own home and would hate the idea of living in a nursing home. On questioning, she
said that she would rather die from a fall at home than live in safety in a nursing home.
She reported that she is devoted to her dog who sleeps in the bed with her and that having
her dog with her was important to her. Mrs O’Brien noted: ‘you think more of the dog than
you do of yourself’. Mrs Clarke retorted: ‘you might be right’ (both laughing). Mrs O’Brien
offered to take the dog into her house and to bring it to visit Mrs Clarke each day in a local
nursing home. Mrs Clarke replied that this wouldn’t be enough for her or for the dog.
Communication: Mrs Clarke is clear and consistent in her preference to remain in her
own home.
59
An example of a report regarding capacity in an emergency
Retrospective note: Person: Mr Sam Fitzsimons
Assessor: Dr Elizabeth Delahunt, ED Consultant
Date of assessment: 15/09/16
Mr Fitzsimons was admitted to the emergency department having fallen and sustained soft
tissue injuries to his head and arms while very drunk. He was unable to stand unaided
and was barely incoherent most of the time but saying occasionally ‘I’m fine – I’m going
home now’. I concluded that he lacked capacity to make decisions for himself and
informed him politely but firmly that he needed to remain in hospital until he had been
cared for. He fell asleep after ten minutes and later agreed to having his injuries sutured
and to remaining in hospital overnight.
60
Appendix 1 - Resources for supporting someone to make a
decision
Guidance on communicating with people with different communication needs
The HSE’s National Guidelines on Accessible Health and Social Care Service
contains guidance on communicating with people with a range of communication
difficulties, including communicating with a person with an intellectual disability:
http://www.hse.ie/eng/services/yourhealthservice/access/NatGuideAccessibleServic
es/NatGuideAccessibleServices.pdf
The guidelines include guidance on communication aids and devices such as
communication boards and communication passport
Total Communication – Person Centred Planning, Thinking and Practice
http://www.brightpart.org/documents/communicate/tcminibook.pdf
A Positive Approach to Risk Requires Person Centred Thinking
http://www.thinklocalactpersonal.org.uk/_assets/Resources/Personalisation/Personal
isation_advice/A_Person_Centred_Approach_to_Risk.pdf
Communication devices
AssistIreland.ie provides information on communication devices, including word and
symbol boards
http://www.assistireland.ie/eng/Products_Directory/Communication/Communication_
Aids/
Supporting someone with an intellectual disability
The Choices website is a resource developed by Inclusion Europe looking at
supporting decision-making, including non-conventional forms of communication, in
different areas of their lives including healthcare, finance and banking, and housing
http://www.right-to-decide.eu/
US National Resource Centre for Supported Decision-Making
http://supporteddecisionmaking.org/
61
Appendix 2 - Guide to a functional approach to assessing
capacity
The following is an example of how you could undertake and document a functional
assessment of capacity. It is essential to remember when undertaking a functional
assessment to capacity that you are focussing on the specific decision that is being
made, at the time that the decision is to be made. The functional approach to
capacity has the benefit of facilitating people to make their own decisions whenever
possible and minimises the restriction on an individual’s decision-making autonomy.
It also means that no ‘short-cuts’ for assessing capacity are possible.
Details of relevant person
Name:
Address:
Date of birth:
Patient identification number:
Date of assessment: (If conducted over a period of time, note this with details)
Place of assessment:
62
Details of the decision
What is the particular decision that needs to be made at this time?
If there is more than one decision to be made each decision must be considered and recorded
separately.
What is the information relevant to the decision?
The information about different options that the relevant person is required to understand, retain and
use and weigh in reaching his or her decision should be recorded. This includes information about the
reasonably foreseeable consequences of each of the available choices or failing to make the
decision.
What is the reason for assessing capacity?
There should always be an adequate reason for assessing capacity. The fact that someone is or is
likely to make an unwise choice is not of itself an adequate reason to challenge someone’s capacity
to make that decision. The reasons for assessing capacity should be stated.
What is planned if a finding of lack of decision-making capacity is made?
Capacity should only be assessed if an intervention would be possible and proportionate in the
circumstances. The nature and extent of any possible intervention will depend on the findings of the
assessment, but there should be some preliminary note of the options that might be considered.
63
Prior to undertaking an assessment
Has the decision which has to be made been discussed previously with the
relevant person? Provide details
Has the relevant person been informed and does the person understand that a
question has been raised about their decision-making capacity?
Is the person able to understand that there are choices in relation to the
decision to be made?
Does the person need support to make the decision?
If so, has the person been offered support (and if not, why not?)
Detail the type of supports to be provided.
Has the person formally appointed an Assistant Decision-Maker or a CoDecision-Maker (with authority relevant to the current decision) under the Act?
Has the person named any person that he or she wishes to support or assist
them?
Has the person named any person that he or she wishes to be consulted on
the decision?
Has the person made an enduring power of attorney or an advance healthcare
directive? If so, has the attorney or the directive been consulted?
64
Conducting an Assessment
Name, title, specialty, organisation and address of assessor
Name, title, specialty, organisation and address of other health and social care
professionals present at assessment
Name, details and role of others present to support the relevant person
(including interpreter, advocate or supporters)
Name / details / date of any consultation or specialist opinion and summary of
relevant information (attach any Specialist Assessments)
List all actions taken to enhance the ability of the relevant person to make his
or her own decision
Are there reasons to believe the person may be better able to make this
decision at a different time or in different circumstances?
If so, is it possible to delay the decision until the circumstances are different?
Record below any reasons why the decision can, or cannot be delayed:
Has the information relevant to the decision been presented to the relevant
person during this assessment? If not, why not?
65
Assessment of capacity
N.B. For each of these questions, the assessor must provide details including
verbatim quotes, if appropriate, to show how he or she came to their opinion
1. Is the relevant person able to understand the information relevant to the
decision? Yes/No – provide details
A broad, general understanding of the most essential points in a person’s
individual circumstances is all that is required.
2. Is the relevant person able to retain that information long enough to
make a voluntary choice? Yes/No – provide details
The fact that a person is able to retain the information relevant to a decision
for a short period only does not prevent him or her from being regarded as
having the capacity to make the decision.
3. Is the relevant person able to use or weigh that information as part of
the process of making the decision? Yes/No – provide details
It is not necessary for a person to use and weigh every detail of the options
available to them in order to demonstrate capacity, merely the main factors.
Making a decision that the assessor or others regard as unwise is not of itself
evidence that the relevant person is unable to use or weigh information.
4. Is the relevant person able to communicate his or her decision (whether
by talking, writing, using sign language, assistive technology, or any
other means) or, if the implementation of the decision requires the act of
a third party, to communicate by any means with that third party. Yes/no
– provide details
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Outcome of assessment
Based on this assessment, has the relevant person the capacity to make this
particular decision at this time? Yes/No – provide details
If the assessor has answered YES to questions 1 to 4, the person is considered TO
HAVE the capacity to make this particular decision at this point in time.
If the assessor has answered NO to any one of questions 1 to 4, the person is
considered NOT TO HAVE the capacity to make this particular decision at this point
in time.
If the outcome is such that the person is considered TO HAVE the capacity to
make this particular decision at this time, their decision must be respected.
If the outcome is such that the person is considered NOT TO HAVE the
capacity to make this particular decision at this time the post assessment
process must be completed.
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Post-assessment process
Are there reasons to believe the person may be better able to make this
decision at a different time or in different circumstances?
This includes the likelihood of the recovery of the relevant person’s capacity in
respect of the matter concerned.
If so, is it possible to delay the decision until the circumstances are different?
Record below any reasons why the decision can, or cannot be delayed:
What are the present will and preferences of the relevant person with regard to
the decision (if reasonably ascertainable)?
What were the past will and preferences of the relevant person with regard to
the decision (if reasonably ascertainable)?
Provide details of the evidence for responses and of the efforts to ascertain the past
will and preference
Is it intended to give effect to the past and present will and preferences of the
relevant person?
If not, what are the reasons?
The 2015 Act requires that an intervener shall ‘give effect, is so far as possible, to
the past and present will and preferences of the person in so far as they are
reasonably ascertainable’
What are the pertinent beliefs and values of the relevant person?
The 2015 Act requires that an intervener shall ‘take into account the beliefs and
values of the person (in particular those expressed in writing) in so far as they are
reasonably ascertainable’.
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Provide details of the evidence for responses and of the efforts to ascertain the
beliefs and values of the relevant person
Other views to be considered if appropriate and practicable to do so.
Provide details of consultation with the following person or persons if such exist or
provide reasons for considering that it is not appropriate or practical to seek and
consider their views.
1. Anyone named by the relevant person as a person to be consulted on the
matter concerned or any similar matters?
2. Any decision-making assistant, co-decision maker, decision-making
representative, designated healthcare representative or attorney for the
person.
Conclusion and plan
Health and social care professional carrying out assessment to write up conclusion
and plan for the relevant person
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