Legislation Patricia T RickardClarke Chair National Advisory Committee Promotion of Human Rights of Older People It is all about Human Rights Baroness Hale UK Supreme ID: 335295
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Slide1
Assisted Decision-Making (Capacity)
Legislation
Patricia
T
Rickard-Clarke Chair: National Advisory CommitteeSlide2
Promotion of Human Rights of Older People
“It
is all about Human
Rights”
Baroness
Hale, UK Supreme
CourtSlide3
Council of Europe Recommendation
CM/REC
2014
The purpose of the present recommendation is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all older persons, and to promote respect for their inherent dignity (Para 1)
Older persons … are entitled to lead their lives independently, in a self-determined and autonomous manner. This encompasses,
inter alia
, the taking of independent decisions with regard to all issues which concern them, including those regarding their property, income, financial, place of residence, health, medical treatment or care…(Para 9)Slide4
Lunacy Regulations (Ireland) Act 1871 Slide5
Overview
Why Ireland needs
reformed legislation – existing structures
Assisted Decision-Making (Capacity) Bill 2013
Planning Ahead
Advance Healthcare Directives
Enduring Powers of attorney
Advocacy within the legislative framework
Impact of legislation
ConclusionSlide6
Existing Structures
Definition of Capacity – not defined in legislation so different approaches apply
Presumption of Capacity – at common law
Ignored in practice
Next of kin
No general authority
No emphasis on person’s individual rights and wishes
Right to privacy and confidentiality
Ignored in practice
Wards of Court
Lunacy Regulations (Ireland) Act 1871
Status
approach to
capacity
Discriminates
on grounds of a disability
Mainly
concerned with property matters
No participation by person subject of application
No
reviewSlide7
Existing Structures
Advance Healthcare directives
Legally valid and recognised by courts
But no statutory provision/legal uncertainty
Enduring Power of Attorney
No provision for health care decisions
No proper reporting requirement/accountability when registered
(Minimal recognition to right of autonomy and self-determination)
Deprivation
of
Liberty/Restraint
Decision with regard to place of residence not considered
Come within provisions of ECHR but
No clear legal procedural rules
Right
to private property
Issue of financial abuse not addressed
Cultural ‘right to inheritance’Slide8
National and International ObligationsConstitution of
Ireland
The European Convention on Human Rights
UN
Universal Declaration on Bioethics and Human Rights 2005
UN Convention on the Rights of Persons with Disabilities 2006
(signed by Ireland 2007
)
Council of Europe
Recommendation on Principles concerning Powers of Attorney and Advance Directives for Incapacity
September
(2009)
Council of Europe
Recommendation on the Promotion of Human Rights of Older Persons (2014)Slide9
Legislative Framework
Decision-making Capacity (not mental capacity)
Lunacy Regulations (Ireland) Act 1871
to be
repealed
Progressive piece of legislation
To be in compliance with UNCRPD
Challenges
Advance Healthcare Directives
Statutory provisions published by
D of H
2014 incorporated in to the 2013 Bill on 17 June
2015
Powers of Attorney Act 1996
Reform and updating – many more safeguards
To include
healthcare decision Slide10
Definition of Capacity
A person’s decision-making capacity is to be construed functionally
Capacity
- ability to understand at a time a decision has to be made, the nature and consequences of the decision to be made by a person
in the context of available choices
at that time
(No blank canvass KK case
)
Lack of Capacity –
unable to
understand information relevant to decision
retain that information
long enough to make a voluntary choice
use or weigh that information as part of the process of making the decision
or
to communicate decision by any means (including sign language/assistive technology) or if the implementation of the decision requires the act of a third partySlide11
Functional Approach
The fact that a person lacks capacity in respect of a decision on a particular matter at a particular time does not prevent him/her from being regarded as having capacity to make decisions
on the same matter
at another
time
The fact that a person lacks capacity of a decision on a particular matter does not prevent him/her from being regarded as having capacity to make decisions on other mattersSlide12
How is capacity to be assessed?
A person
is not to be regarded as unable to understand information relevant to
a decision
if they are able to understand an explanation of it given in a manner appropriate to circumstances.
The
fact that a person is able to retain information
for a short
period only does not prevent him/her
from
being
regarded
as having capacity to make
the decision
(When there are doubts assessment should be done at highest level of functioning)
Information relevant to decision includes
information about the reasonably foreseeable consequences
of each of the available choices at the time the decision is made
or failing to make the decision
-
c
onsequences
may be different for different
peopleSlide13
Who will assess Capacity?
In line with functional assessment – time specific, issue
specific requirement
Will depend on particular decision to be made
Generally it will be the person who needs the decision to be made
Consent to medical treatment – healthcare professional
Legal transaction - Will, EPA, solicitor handling transaction
Everyday decisions - Carer
Formal processes may be required
If assessment is challenged
Serious decision – person must be able to justify findings
Document: Justify findings based on criteriaSlide14
Guiding Principles for any intervention
Presumption of capacity unless the contrary is shown
Relevant person shall not be considered as unable to make a decision unless all relevant steps taken, without success, to help him or her to do so.
Making an unwise decision is not indicative of being unable to make a decision
There
shall be no intervention unless it is necessary to do so having regard to the individual circumstances of relevant personSlide15
Guiding Principles (continued)
An
Intervention
shall be in a manner that
Minimises
the restriction of relevant person’s rights
Minimises the restriction of freedom of action
Has
regard to the need to respect the right of the relevant person to his or her dignity, bodily integrity, privacy and autonomySlide16
Any Intervener shall
Permit
, encourage and facilitate the relevant person to participate or to improve his or her ability to participate
Give effect, in so far as practicable, to the past and present will and preferences, in so far as reasonably ascertainable
Take into account the beliefs and values of the relevant person
Take into account any other factors which the person would be likely to consider if able to do so
Unless not appropriate or practicable consider view of person named by relevant person to be consulted/ other appointed
Act at all times in good faith and for the benefit of the person Slide17
Decision-Making/Interveners
Planning
in
advance (personal appointments
)
Enduring Power of Attorney
Advance Healthcare Directive
No pre-planning
Decision-Making Assistant (personal appointment)
Person has capacity but needs assistance
Co-Decision-Maker (personal appointment with oversight)
Person does not have capacity but may be able to decide if had assistance
Decision-Making Representative (court appointment)
Person does not have capacity to decide
Court (declarations, interim orders, reviews + expert reports)Slide18
Existing Wards of Court
Need to apply human rights standard – functional assessment of capacity
Review
of assessment of
capacity
Declarations by court
Discharged /appropriate order/s made
Transferred to new system/appropriate order/s made
Application for review
Person whose capacity is at issue (relevant person)
Another person who has an interest in the welfare of ward
Period in which review must be completed
Within a 3 year period from date of coming into effectSlide19
Self-Determination and AutonomySlide20
“I am no bird; and no net ensnares me: I am a free human being with an independent will.” Charlotte Brontë, Jane EyreSlide21Slide22
Council of Europe Recommendations
Member States should promote self-determination for capable adults by introducing legislation on continuing powers of attorney and advance directives …with a view to implementing the
principle of self-determination
CM/REC (
2009)11
Member
States should provide for legislation which allows older persons to regulate their affairs in the event that they are
unable
to express their instructions at a later stage
CM/REC (
2014)2
Advance Healthcare Directives
Enduring Powers of AttorneySlide23
What is an Advance Healthcare Directive?
An
advance healthcare directive
: means an advance
expression
of will and preferences made by a person with capacity, …..concerning
treatment
decisions that may arise in the event that the person subsequently loses capacity
Purpose:
To enable persons to be treated according to will and preferences
To provide healthcare professionals with important information about persons in relation to their treatment choices
Made by a person with capacity + who is over 18 years, can refuse treatment (including a reason based on religious beliefs) notwithstanding that the refusal
Appears to be an unwise decision
Appears not to be based on sound medical principles or
May result in deathSlide24
Definitions
What is treatment:
Means an intervention that is or may be done for a therapeutic, preventative, diagnostic, palliative or other purpose related to the physical or mental health of the person, and includes life-sustaining
treatment
(Includes artificial nutrition and hydration)
Basic care is not treatment and therefore AHD is not applicable to basic care
Includes (but is not limited to) warmth, shelter, oral nutrition, oral hydration and hygiene measures
(Does
not include artificial nutrition or artificial
hydration)
Law on AHD does not affect the existing law on euthanasia or assisted suicideSlide25
Treatment Refusal
A
treatment refusal
(legally binding) must
be complied with if 3 conditions are met:
At the time in question the maker of AHD lacks capacity to give consent to the treatment
The treatment to be refused is clearly identified
The circumstances in which the refusal of treatment is intended to apply are clearly identified in the AHD
Refusal of Life- sustaining treatment
: Must be substantiated by a statement in the AHD by the directive-maker to the effect that the AHD is to apply to that treatment even if his or her life is at riskSlide26
Treatment Request
A
request for specific treatment
in AHD is not legally binding but shall be taken into account during any decision-making process which relates to treatment if that specific treatment is relevant to medical condition for which the maker of AHD requires treatment
Where request for specific treatment in AHD is not complied with, the healthcare professional shall
Record reason for not complying with AHD in health record and
Give copy of reasons to person’s designated healthcare representative as soon as practicable but in any case, not later than 7 working days after they have been recordedSlide27
Validity and Applicability of AHD
Not valid
If not made voluntarily
While person had capacity, has done anything clearly inconsistent with the AHD remaining his/her fixed
decision
Not applicable
Person still has capacity to consent to or refuse treatment
Treatment in question is not broadly recognisable as specific treatment set out in AHD as requested or refused
Where specific treatment set out – the circumstances set out in AHD as to when such specific treatment is to be requested or refused, are materially absent or different
Is not applicable to basic
care
Hague Convention
If AHD made outside the State but substantially compliesSlide28
Designated Healthcare Representative
Person can designate a named individual (or alternate) to exercise the powers of a designated healthcare representative
Designated healthcare representative shall:
Ensure
that the terms of AHD are complied with
The maker of an AHD may confer on his or her
designated
healthcare representative
The power to advise and interpret what the directive-maker’s will and preferences are regarding treatments
The
power to consent to or refuse treatment, up to and
including refusal of life-sustaining treatment
based on the known will and preferences of the directive-maker
Designated Healthcare Representative shall:
Make and keep a record in writing of decision (7days)
Produce record for inspection at request of directive-maker if regains capacity or Director DSSSlide29
Register of AHDs
Regulations will require
Maker of AHD to give notice of the making of an AHD to the Director of Decision Support Service and
to
other specified
persons
Regulation will also require
Director of Decision Support Service to establish a Register of AHD notified to him or
her
Director shall receive and consider complaints all allegations in relation to manner a healthcare representative is exercising his or her relevant powers
Director may prepare and publish a
Code of
Practice
based on recommendations of Working Group set up by Minister for HealthSlide30
Liability
Failure to comply with a valid and applicable AHD will give rise to:
civil and criminal liability for breach of common law duty or statutory duty
A healthcare professional shall not incur any civil or criminal liability
if did not comply with AHD, had reasonable grounds to believe and did believe that refusal was not valid or applicable or both
he or she was unaware of the existence and contents of an advance healthcare directive at the time the specified treated was carried out or continued
Conscientious objections
Pichon and Sajous v France
(ECHR No49853/99)
Conscientious objections remains a limited right derived from religious freedom that cannot lead to the restriction of the rights and freedoms of another person Slide31
Enduring Powers of Attorney
Existing powers of attorney that have been registered will continue to have
effect
Existing powers of attorney that have not been registered will come within provisions of new
legislation
Once
legislation is enacted all new EPAs must be created under the Assisted Decision-Making (Capacity)
Act
Principles set out in legislation will apply to
attorneys
There will be an obligation to ascertain will + preferences and to take account of beliefs + values
even when EPA is registeredSlide32
What decisions/Authority?Personal Welfare
which
will include
Healthcare
Decisions
All Personal Welfare decisions or
Specific Personal Welfare decision/s
Property and Affairs:
All Property and Affairs decisions or
Specific Property and Affairs
decision/s
Both Personal Welfare decisions + Property and Affairs decisions
General Authority
Specific Person Welfare decision/s + Specific Property and Affairs
decision/s
Suitable PersonSlide33
Register and Reports
Director of Decision Support Service shall establish and maintain a register of registered
EPAs
Members of the Public may inspect Register
Director may issue attested copies to persons who have a good and sufficient reason to have a copy
An Attorney must
At least every 12 months prepare and submit to the Director a report as to the performance of his or her functions as such attorney
Every report shall include details of all expenses and remuneration paid or reimbursed to the attorneySlide34
Decision Support ServiceSlide35
Decision Support Service
Director of Decision Support Service – Courts
Service
Director’s Functions
To promote public awareness of the Act + matters relating to the exercise of capacity………….
To promote public confidence in the process of dealing with matters that affect persons who require assistance…..
To provide information and guidance…….
To supervise………….
To provide information and guidance to organisations……….
To identify and make recommendations for change in practices in organisations and bodies in which the practices may prevent a relevant person from exercising his/her
capacitySlide36
RegistersDirector shall establish and maintain a Register
Co-Decision Making Agreements
Decision Making Representation Orders
Enduring Powers of Attorney
Advance Healthcare Directives
Public Register
Copy can be obtainedSlide37
Investigations by Director
Director may investigate on own initiative or in response to a complaint
The Director
will have power to:
Summon witnesses and examine them on oath
Require the witness to produce any document under his/her power or control
By notice in writing require any person to provide such written information as the Director considers necessary
Director can investigate complaint even though complainant may be entitled to bring court proceedings
Director may seek resolution of complaints in such manner (including by informal means) as Director considers appropriate and reasonable
Person can be guilty of offences if fails to comply or hinders/obstructs Director in the performance of functionsSlide38
Independent AdvocacySlide39
Trusted Third Party
Council of Europe Recommendation CM/REC 2014
Older
persons have the right to receive appropriate support in taking their decisions and exercising their legal capacity when they feel
the
need for it, including by appointing a trusted third party of their own choice to help with their decisions. The appointed third party should support the older person on his or her request and in conformity with her or her will and preferences
(Para 13)Slide40
Quality Standards: Why Advocacy?
Acknowledgment
that some older persons need support in asserting their rights, in having their voice heard and in articulating their will and preferences.
It
is widely accepted that support and advocacy has an important role to play in helping services to meet the range of needs of individuals and groups who require additional support.
Some Statutory provision
Mental
Health Act 2001
-
legal advocacy for people with mental health difficulties.
Disability
Act 2005
provides entitlement
to advocacy for persons with a disability
(NAS set up on a non-statutory basis)
Citizens
Information Act 2007 provides for the establishment of a Personal Advocacy Service.
HIQA
Standards
reference
the role of advocacy and the need to make provision for people to have access to independent advocates
Ombudsman Reports reference the important role of advocates - recommended establishment of an independent advocacy service in hospital.
HIQA Report -
Midland Regional Hospital,
Portlaoise. Recommendation for establishment of an advocacy service for hospitals. Agreed by Minister. Slide41
Comparative
UK – Independent Mental Capacity Advocates
Provision of serious medical treatment by NHS body
Provision of accommodation by NHS body/local authority
Stay in Hospital longer than 28 days
Stay in Care Home more than 8 weeks
Canada – Seniors Advocate Act 2013
Remit – to monitor
,
analyse
and make recommendations on broad systemic issues affecting
seniors
Australia – National Disability Advocacy Programme
B
ased on UNCRPD
Slide42
Quality Standards: What Support and Advocacy Work with Older Persons Is?
Safeguarding people’s basic human
rights
Enabling people to tell other people what they
want
Helping
people to know what choices they have and the
likely consequences
of these
choices
Enabling
individuals and groups to have control over their livesSlide43
Assisted Decision-Making(Capacity) [Act]
Independent advocacy –
a reality
Recognition of the role of Advocacy
Supported Decision-Makers, Court Friends, Assist Attorneys, Healthcare Representatives
Director of Decision Support Service to prepare and publish Code of Practice for
t
he guidance of persons acting as advocates on behalf of relevant personsSlide44
Issues still to be addressedDeprivation of LibertyIn breach of European Convention of Human RightsNot in compliance with provision of UNCRPD
Chemical Restraint
In breach of European Convention of Human
Rights
Inhuman and degrading treatmentSlide45
Key Implications of legislation
Cultural
shift required - the need to respect the rights of each person as an individual human
being
Implications in practice - how legislation is implemented – quality of education and training
Implications for systems and structures
Must be materially different from
existing
Must have vision to drive change
Must be an understanding of what is actually required
Providers of Services must ensure standards are met
DSS make recommendations to the Minister on any matter relating to the operation of the ActSlide46Slide47
Faic
fút
féin
/
gan
tú
féin
Thank you