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HSE National Conference
Assisted Decision-Making: Challenges and Opportunities for Health and
Social Care Professionals
Assisted Decision-Making (Capacity) Act 2015
Patricia T Rickard-Clarke 22 February 2016
Council of Europe Recommendation 99(4) on Principles concerning the Legal Protection of Incapable Adults 1999
Respect for Human Rights
The fundamental principle underlying all the other principles, is respect for the dignity of each person as a human being. The laws, procedures and practices relating to the protection of incapable adults shall be based on respect for their human rights and fundamental freedoms
General Rights and Principles informing ADM(C) Act 2015
All persons have equal legal rights (legal capacity)
A person’s rights to his or her dignity, bodily integrity, privacy, autonomy and control over financial affairs and property must be respected
Principle of autonomy and self-determination must be
respected – effect must be given to will and preferences, beliefs and values in so far as reasonably ascertainable
Any necessary intervention must minimise restriction on a person’s rights and restriction on freedom of action
All persons have the right to consent to and to refuse
medical treatment
Overview Existing structures
General Overview of what is included and what is not included
Assisted Decision-Making (Capacity) Act 2015
Capacity and how it is to be assessed
Overarching Guiding Principles to apply
Mechanisms to assist and support decision-making
Courts Jurisdiction
Decision Support Services
Impact of legislation
Existing Structures
Definition of Capacity – not defined in legislation
National policies not uniformly followed in practice
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
Data Protection used as a shield when it suits
Advance Healthcare directives
Legally valid and recognised by courts
But no statutory provision/legal uncertainty
Existing Structures
Enduring Power of Attorney under 1996 Act
No proper reporting requirements
No accountability when registered
High Court application necessary to address issues
No provision for healthcare decisions
Wards of Court
Lunacy Regulations (Ireland) Act 1871
Status approach to capacity continues to be used – conflicts with common law precedents and National Policies
Discriminates on grounds of a disability
Mainly concerned with property matters
No participation by person subject of application
No review
Existing Structures – still to be addressed
Right to private property
Issue of financial abuse not addressed
Cultural ‘right to inheritance’
Deprivation of Liberty/Restraint
Decision with regard to place of residence not considered
Come within provisions of ECHR but no clear legal procedural rules
Chemical Restraint
Breach of ECHR – Art 3 inhuman and degrading treatment
NHSS (Fair Deal)
Limitations need to be addressed
Interface with ADM(C)Act 2015 necessary
Who is the ADM(C)legislation for? Relevant person
A person whose decision-making capacity is in question or may shortly be in question in respect of one or more than one matter
A person who lacks capacity in respect of one or more than one matter
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 in respect of one or more than one matter at the same time but in respect of different matters
Decision-making capacity = Not mental capacity
Cognitive ability/capacity = Medical assessment of mental state
(Obligation to ensure that this is fully understood in practice. Direct communication with relevant person is necessary in order to fully comply with legislation)
Assessment of Capacity A person’s decision-making capacity is to be construed
functionally (FK case)
Capacity - a person’s capacity shall be assessed on the basis of his or her ability to understand, at the time that a decision has to be made, the nature and consequences of the decision to be made by him or her in the context of available choices at that time
(time specific + issue specific) (No blank canvass KK case EWCOP [2012] – onus on assessors)
(..[the] courts must guard against imposing too high a test of capacity to decide issues such as residence because to do so would run the risk of discriminating against persons suffering from a mental disability – PH case EWCOP [2011])
Lack of Capacity A person lacks of capacity to make a decision if he or she is
unable to –
Understand the information relevant to decision
retain that information long enough to make a voluntary choice (WCC v Sykes [2014] EWCOP)
use or weigh that information as part of the process of making the decision or
(Not necessary for a person to demonstrate a capacity to understand and weigh up every detail of the respective options, but merely the salient factors KK case 2012)
to communicate decision by any means (including sign language/assistive technology) or if the implementation of the decision requires the act of a third party
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 (Make sure correct environmental factors are suitable for the person – onus on assessor)
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 matters (Issue specific)
When there are doubts about capacity, assessment should be done at highest level of functioning and only if it is necessary
Information relevant to decision A person is not be regarded as unable to understand information
relevant to a decision if he or she is able to understand an explanation of it given in a way that is appropriate to his or her circumstances (using clear language, visual aids or other means)
(Support: He told me that he was at risk of forgetting and thus needed a carer who could assist him – WCCG v IA 2014)
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 (Consequences may be different for different people)
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
Guiding Principles (ADM(C) Act) Principles shall apply for the purposes of an intervention (before
and during any intervention in respect of a relevant person) and the intervener shall give effect to the principles:
Presumption of capacity unless the contrary is shown – (starting point for everyone)
Relevant 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. (What information is required, how is it to be presented/communicated – assessor)
Making, having made or likely to make an unwise decision is not indicative of being unable to make a decision (KK + Sykes cases)
There shall be no intervention unless it is necessary to do so having regard to the individual circumstances of relevant person (Is an assessment necessary- think ahead about least intrusive manner)
Guiding Principles (For Intervention) An Intervention
Shall be in a manner that minimises
the restriction of relevant person’s rights, and
the restriction of relevant person’s freedom of action
Have due regard to the need to respect the right of the relevant person to dignity, bodily integrity, privacy, autonomy and control over his/her financial affairs and property
Be proportionate to the significance and urgency of the matter the subject of the intervention and
Be as limited in duration in so far as practicable after taking into account the particular circumstances of the matter the subject of the intervention
Where a person lacks capacity - the likelihood of recovery of relevant person’s capacity in respect of the matter at issue
Guiding Principles (For Intervener)
Permit, encourage and facilitate the relevant person to participate or to improve his or her ability to participate, as fully as possible in the intervention. (Appropriate Communication skills essential)
Give effect, in so far as practicable, to the past and present will and preferences, in so far as are reasonably ascertainable (Avail of Opportunities to find out)
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 inappropriate/impracticable to do so, consider the views of
Any person named by the relevant person to be consulted
Any nominated decision-making
Guiding Principles (continued)
Act at all times in good faith and for the benefit of the relevant person (May have to make this judgment call if nothing else. Note not best interest principle)
Consider all other circumstances of which he or she is aware and which it would be reasonable to regard as relevant
The intervener, in making an intervention may consider views of:
Any person engaged in caring for the relevant person
Any person who has a bona fide interest in the welfare of the relevant person, (relative, advocate, case worker) or
Healthcare professional
Decision-Supporters/Interveners
Must be 18 years of age
Interveners: Stages for appointment
When a person has capacity may appoint:
Attorney under an Enduring Power of Attorney
Designated Healthcare Representative in a AHD (or make an AHD with no appointed representative)
Think Ahead/Plan Ahead
Enduring Power of Attorney
Advance Healthcare Directive
Interveners: Stages for appointment When a person considers his/her capacity to be in question or
may shortly be in question may appoint a:
Decision-Making Assistant (to assist with decision/s)
Co-Decision-Maker (to jointly make decision/s)
When a person lacks capacity – application is made to the court and if the court makes a declaration that person lacks capacity, court will make an order (have regard to any AHD/EPA)
Make the decision on behalf of the person
Appoints a decision-making representative to make specified decisions on behalf of person
Can be at different stages at same time for different decisions
Attorneys - Enduring Power of Attorney
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
Attorneys appointed under 2015 Act Functional assessment of capacity
Guiding Principles apply – participation by donor even if EPA has come into effect
Personal welfare decisions include healthcare decisions
Court – Circuit Court
Attorney - ‘suitable person’
Detailed ‘ineligible’ list and disqualifications
Execution: Statements by
Donor, lawyer, doctor, healthcare professional + attorney
Does not enter into force until:
The donor lacks capacity in relation to relevant decision/s
Instrument creating EPA has been registered
Scope of Authority in EPA
Donor can confer either or both of:
General authority to act on the donor’s behalf in relation to all or a specified part of the donor’s property and affairs,
or
Authority to do specified things on the donor’s behalf in relation to the donor’s personal welfare (includes healthcare) or property and affairs, or both
which may, in either case, be conferred subject to conditions and restrictions
Scope of Decisions in EPA
A donor shall not, in an EPA, include a relevant decision –
Relating to the refusal of life-sustaining treatment or
Which is the subject of an advanced healthcare directive
To the extent that an EPA includes a relevant decision relating to these issues the power shall be null and void
Registration of an EPA
Application for registration to Director DSS
Notice must be given to specified parties
On receipt of application Director shall carry out reasonable enquiries in order to establish criteria met which includes being satisfied that the attorney is a suitable person and that the application is in accordance with the statutory provisions
Details of any existing agreement/advance healthcare directives
Register for EPAs Director of DSS shall establish and maintain a Register
Shall make Register available for inspection
May issue an authenticated copy of EPA or part thereof
Shall keep a record of those who inspected Register or who obtained a copy of EPA
Reports by Attorney
Attorney for property and affairs shall within 3 months of registration submit to DirDSS a schedule of assets and liabilities
Shall keep proper accounts and financial records in respect of donor’s income and expenditure and shall
Submit such accounts and records as part of annual report to Director
Make available for inspection by the Director or by a special visitor, as may be reasonable, such accounts and records
Make annual reports on the performance of his/her functions
Attorneys appointed under 1996 Act
Attorneys appointed under the Powers of Attorney Act 1996 for both registered EPA (has come into effect) and for unregistered EPA (has not yet come into effect) the 1996 Rules will apply
Except that provisions under the 2015 Act will apply to 1996 attorneys in relation to:
Complaints may be made against attorneys
Director of Decision Support Service may carry out an investigation
Matter may be referred to the court
Attorney may no longer act
EPA may be revoked
Advance Healthcare Directives
Decision-Making Assistance
Decision-Making Assistant A person who consider his/her capacity to be in question or may
shortly to be in question may appoint another person/s to assist the appointer in making one or more than one decision
The appointment of an assistant decision-maker shall be made in an Decision-making assistance agreement
Can appoint more than one person in an assistant decision-making agreement and may specify that the decision-making assistants shall act
Jointly
Jointly and severally or
Jointly in respect of some matters and jointly and severally in respect of other matters
Agreement may be revoked by either appointer or assistant at any time and may be varied by the appointer at any time
No reporting requirements
Functions of Decision-Making Assistant Assist the appointer to obtain appointer’s relevant
information (required in relation to a relevant decision)
Advise the appointer by explaining relevant information and considerations relating to a relevant decision
Ascertain the will and preference of the appointer on a matter the subject or to be the subject of a relevant decision and assist the appointer to communicate them
Assist the appointer to make and express a relevant decision
Endeavour to ensure that the appointer’s relevant decisions are implemented
Decision-making assistance agreement
Regulations will prescribe:
Form of agreement
Procedures and requirements relating to execution, variation + revocation
Information to be included (adequate information as to the effect of DMAA)
Statements as of understanding (by appointer + decision-making assistant)
Specifying what decisions
Providing for attestation of signatures (witnesses)
Notices that must be given (to include Director DSS)
Co-Decision-Making
Co-Decision-Making
A person who consider his/her capacity to be in question or may shortly to be in question may appoint a suitable person/s in writing in a co-decision agreement to jointly make one or more than one decision on the appointer’s personal welfare or property and affairs or both
A person is suitable for appointment as a co-decision-maker if he or she –
Is a relative or friend of the appointer who has had personal contact with the appointer over such period of time that a relationship of trust exists between them and
Is able to perform functions under the co-decision-making agreement
Co-Decision-Maker An appointer may appoint more than one person in a co-
decision-making agreement but may not
Appoint in the same co-decision-making agreement more than one person as a co-decision-maker or
Appoint in a co-decision-making agreement a co-decision-maker in respect of a relevant decision which is the subject of another co-decision-making agreement
Co-Decision-Making Agreement must be signed by appointer and co-decision-maker and witnessed by 2 witnesses of whom at least one is not an immediate family member
Functions of a Co-Decision-Maker Advise - by explaining relevant information and considerations
relating to a relevant decision
Ascertain the will + preference of the appointer on a matter the subject of or to be the subject of a relevant decision + assist the appointer with communicating the appointer’s will and preference
Assist the appointer to obtain appointer’s relevant information
Discuss the known alternatives and likely outcomes
Make a relevant decision jointly with appointer
Make reasonable efforts to ensure that a relevant decision is implemented as far as practicable
Shall be entitled to be reimbursed out of the assets of the appointer in respect of fair + reasonable costs and expenses but not entitled to remuneration
Co-Decision-Maker- obligations
Obligation to inform Director if capacity deteriorates/improves
Shall acquiesce with wishes of appointer and shall not refuse to sign document unless reasonably foreseeable that such acquiescence or signature will result in serious harm….
Shall not have authority to make decisions jointly with relevant person other than the relevant decisions in Co-DM agreement
Where more than one Co-DM, each shall exercise functions in a manner which is not inconsistent with functions of another Co-DM
Registration of a Co-DM Agreement Shall not enter into force until registered
Application must be made within 5 weeks from date agreement signed (Objections to registration – within 5 weeks of notice)
Notice must be given to ……
Application
Statement by appointer….understands implications….
Statement by co-decision-maker…..guiding principles….reporting obligation
Statement as to why less intrusive measure of decision-making assistance agreement was not chosen
Details of any other agreements/epa/ahd…..
Statement by doctor/healthcare professional……
Character reference of co-decision-maker
Copies of notices and Fee
Registration of CDMA Director DSS will review application + any objections received
Carry out enquiries
Where satisfied register CDMA and notify applicants date registered
Where not satisfied notify applicants, provide reasons and give time to respond – if failure – court application
Effect of registration
Cannot be challenged on grounds that appointer did not have capacity to make decision
A relevant decision made otherwise than jointly is void
Objections to Registration Within 5 weeks of notice may object/grounds – fraud/undue influence
Annual Review of Co-Decision-Making Agreements- capacity
Annual Report by CDM to DDSS on performance of functions
Register for Co-DM Agreements Director of DSS shall establish and maintain a Register
Shall make Register available for inspection
May issue an authenticated copy of C0-DM Agreement
Shall keep a record of those who inspected Register or who obtained a copy of Agreement
Director shall review – 3 months - first anniversary and thereafter at intervals not exceeding 3 years
Statements required from medical practitioner/healthcare professional
Director may make an application to the court
Reports by Co-Decision-Maker annually
Variation (if registered)
Requires agreement of both appointer and co-decision-maker to vary
Revocation (whether registered or not)
May be revoked at any time by the appointer or co-decision-maker or both
Decision-Making Representation
Decision-Making Representation Court makes a declaration that relevant person lacks capacity
Court may make order:
Making the decision/s if satisfied matter is urgent or it is expedient to do so
Make an order appointing a Decision-Making Representative
In making order takes account of any EPA/AHD and in making order ensure terms are not inconsistent with EPA/AHD
In appointing DM Representative court will have regard to:
The known will and preferences of relevant person
Desirability of preserving existing relationships within family
Relationship/Compatibility between relevant person + proposed representative
Whether proposed representative will be able to perform functions
Any conflict of interest
Decision-Making Representation Order
Court will set out powers of decision-making representative
Impose duties and attach conditions and time period to apply
Ensure that powers are limited in scope + duration as necessary
May appoint one or more than one person for different decisions
Where more than one person appointed the court order shall specify whether such persons are to act
jointly,
jointly and severally or
jointly as respects some relevant decisions and jointly and severally as respects other relevant decisions
Decision-Making Representative
Court shall require representative/s to sign statement, he/she:
Understands and undertakes to act in accordance with powers conferred and duties imposed on him/her by the court
Understands and undertakes to act in accordance with the Guiding Principles
If no suitable person – the court will require Director DSS to nominate 2 or more persons from a panel for consideration by the court
Decision-Making Representative: Scope of Authority
Cannot prohibit contact with others
Authority confined to decisions included in court order
Cannot make decisions on life-sustaining treatment (consent or refusal)
Shall not restrain relevant person unless exceptional emergency circumstances
Shall not administer medication to control or modify behaviour of a relevant person
DDSS shall maintain a Register of DM Representation Orders
DDSS shall establish a panel of suitable person willing and able to act as decision-making representatives
Complaints in relation to Interveners Complaint made to the Director DSS:
Acting outside the scope of authority
Not a suitable person/unable to perform function
Not exercising authority appropriately
Fraud, coercion or undue pressure was used
Director shall consider complaints and allegations
If satisfied has substance, shall conduction an investigation (has detailed powers)
Director shall decide to take no further action or
Director shall (where complaint well founded) make an application to court for a determination
Court will determine application
Make an order if appropriate for -
Revocation of authority
Removal of instrument from Register
Court Jurisdiction
Courts Jurisdiction
Circuit Court to have exclusive jurisdiction for purposes of the Act except in specified matters where the High Court has jurisdiction such as:
Life sustaining treatment
AHD and pregnancy
Where HC is the wardship court
Review of persons for purposes of Mental Health Act 2001
Hague Convention
Circuit Court judges – specialist judges
Court Orders
Court will have power to make:
a declaration as to whether a person has capacity or not
a declaration as to the lawfulness of an intervention proposed to be made in respect of relevant person
Interim order
In relation to a matter in which the court has jurisdiction in relation to the matter
The court has reason to believe that the relevant person lacks capacity (Re F [2009] EWHC) and
In the opinion of the court, it is in the interests of the relevant person to make order without delay
Review by Court
Court must review declaration as respects capacity + orders made and if necessary revoke or amend an order
Court can seek ‘expert’ report
Special and general visitors
Appoint a ‘court friend’
Wards of Court
Review of all existing wards within a period of 3 years from operation of legislation
Application by relevant person
Another person who has an interest in the welfare of ward
Application to ‘wardship’ court
If have capacity will be discharged and property returned
If lack capacity will be discharged and assessed as to what decision-making support necessary
Co-Decision-Making or Decision-Making Representative and on registration/appointment property returned
Court will direct DDSS to exercise functions + give directions
Lunacy Regulations(Ireland) Act 1871 will be repealed
Existing Wards who are Detained Currently do not come within review provisions of MHAct
Where person who is a ward is detained
Review by wardship court as soon as possible
If on review person still suffering from mental disorder shall direct detention shall continue for period not exceeding 3mths
If still detained must be reviewed every 6 months
If wardship court decides no longer suffering from mental disorder shall order the discharge from detention
Wardship court will hear evidence from treating consultant psychiatrist and from independent consultant psychiatrist
Review of wards in approved and non-approved centres
Decision Support Service
Decision Support Service Director of Decision Support Service – 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 to relevant persons in relation to their options for exercising capacity
To supervise in accordance with the Act compliance by…….
To provide information in relation to the management of property and financial affairs to relevant persons and to ……
To provide information and guidance to organisations and bodies in the State in relation to their interaction with relevant persons
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 capacity
Investigations by Director Director may investigate on own initiative or in response to a
complaint
May 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
Director shall draw up procedures and publish them
Person can be guilty of offences if fails to comply or hinders/obstructs Director in the performance of functions
Registers and Panels Director shall establish and maintain a Register
Co-Decision Making Agreements
Decision Making Representation Orders
Enduring Powers of Attorney
Advance Healthcare Directives
Director shall establish a panel of suitable persons willing and able to act as –
Decision-making representatives
Special visitors
General visitors and
Court Friends
Codes of Practice The Director may
Prepare and publish a code of practice
Request another body to prepare a code of practice
Approve a code of practice prepared by another body
For the guidance of ……to include persons acting as advocates on behalf of relevant persons
Where the Director minded to exercise powers, shall consult with
HSE, HIQA, NDA, CIB
Representatives of professional bodies in healthcare, social care, legal and financial sectors
Representatives of healthcare, social care, legal and financial professionals
Code of Practice shall be admissible in legal proceedings
Hague Convention
Hague Convention on International Protection of Adults Measures or court orders from Hague Convention
countries will be recognised and enforceable in the State
Irish measures or court orders will be recognised and enforceable in other convention countries
…..subject to the provisions set out in the Act in the implementation of the Convention
Key Implications of the Act in Practice Statutory obligations - the need to respect rights of each
person as an individual human being, autonomy and self-determination – cultural shift required
How legislation is implemented in practice – quality of education and training – individual and institutional obligations to know and understand the law
Providers of Services must ensure legal requirements are adhered to and standards are met- this will require a change from existing practices
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
Thank You