1. Consent and Capacity in Healthcare
Assisted Decision-Making (Capacity) legislation
Patricia T Rickard-Clarke 2 December 2015

2. Assisted Decision-Making(Capacity) Bill Overview
Decision-making Capacity (not mental capacity)
Lunacy Regulations (Ireland) Act 1871 to be repealed
Capacity to be construed functionally
Assessment of Decision-Making Capacity
Levels of Decision-Making
Decision Support Service
Advance Healthcare Directives
Statutory provisions to be included in the legislation
Enduring Powers of Attorney
EPAs created under 1996 Act and registered to remain
New legislative provisions for execution and supervision of EPAs
Healthcare decisions to be included in EPAs

3. General Rights and Principles informing new legislation
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

4. 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/lacks capacity in respect for some matters and at the same time has capacity in respect of different matters
Decision-making capacity = making decisions with legal consequences
Cognitive ability/capacity = medical assessment of mental state
Mental Health = does not mean lack of decision-making capacity
(Obligation to ensure that this is fully understood in practice. Direct communication with relevant person is necessary in order to fully comply with legislation)

5. 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
(..[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 2011)
(No blank canvass KK case – onus on assessors)
Issue and time specific

6. 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
use or weigh that information as part of the process of making the decision (Sharma case) 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

7. 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 suitable for person)
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
When there are doubts about capacity, assessment should be done at highest level of functioning and only if it is necessary

8. 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
(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

9. Who assesses capacity?
In line with functional assessment – time specific, issue specific and only when necessary
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 - Selling Prop., EPA, Will - solicitor handling transaction
Tax returns – Accountant
Financial transaction – bank staff
Day to day - carer
Formal processes may be required
If assessment is challenged
Serious decision – person must be able to justify findings
Document: Justify findings based on legislative criteria

10. Guiding Principles (ADM(C) Bill)
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 relevant steps taken, without success, to help him or her to do so. (What information is required, how is it to be presented/communicated – assessor should plan ahead for this)
Making, having made or likely to make 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 person (Is an assessment necessary- think ahead about least intrusive manner)

11. Guiding Principles (For Intervention)
An Intervention
Shall be in a manner that minimises
the restriction of relevant person’s rights, and
the restriction of 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 (It is all about human rights)
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
The likelihood of recovery of relevant person’s capacity

12. Guiding Principles (For Intervener)
‘Best Interests’ no longer appropriate test
Permit, encourage and facilitate the relevant person to participate or to improve his or her ability to participate (Appropriate Communication skills essential)
Give effect, in so far as practicable, to the past and present will and preferences, in so far as 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

13. 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).
Consider all other circumstances of which 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

14. Mental Health – Mental Illness
Presumption of capacity applies for all purposes
‘Voluntary patient’ has the right to consent and refuse treatment in relation to his/her mental health similar to the right to consent and refuse treatment for a physical illness
Should be fully informed of their rights
A person who lacks capacity who has been deemed a ‘voluntary’ patient has the right to consent to and refuse treatment – who currently makes decision on their behalf???
Should be consulted for each decision (functional test)
[Such patient to be categorised ‘intermediate’]
Assisted Decision-Making (Capacity) Act will apply fully to them – capacity and how assessed
Report: Additional safeguards for ‘intermediate’ patient as will have the same review process as Part 4 ‘detained person’

15. Mental Health – Part 4 MHAct 2001
Common law test (to be statutory) to capacity still prevails
A person suffering from a ‘mental disorder’ is not necessarily incapable of giving or refusing consent to treatment
MHAct 2001 – may be involuntarily detained if suffering from a ‘mental disorder’
Consent to treatment still required unless an emergency subject to exceptions but practice?????
Expert Group Report
A rights based approach to be adopted in revised mental health legislation
If on admission of a patient, admitting professional of view that person may lack capacity to understand or to give informed consent must refer for formal capacity assessment within 24 hrs

16. Decision-Makers/Interveners

17. Decision-Making/Interveners
Planning done in advance (personal appointments):
AHD – setting out wishes
AHD – designated healthcare representative has authority
EPA – attorney has authority
Supporting Provisions: (Understand the distinctions/flexibilities)
Decision-Making Assistant (personal appointment)
Person has capacity but needs assistance
Co-Decision-Maker (personal appointment with oversight)
Person whose capacity is in question or may shortly be in question may appoint a person to jointly make decision/s
May arise from declaration of court as to capacity
Decision-Making Representative (court appointment)
Person does not have the capacity to decide/consent

18. What decisions/authority?
Personal Welfare:
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
(Duty to enquire and ensure person has authority)

19. Decision-Making Assistant
Can appoint a DMAssistant in an Agreement – may appoint a person to make one or more than one decision
Regulations: Prescribing form of Agreement
Procedures as to execution, variation and revocation
Information to ensure document purporting to create agreement has adequate information
Confirmation as to the effect of making/accepting appointment
Notice to DDSS and other specified persons
Functions and scope of authority of DM Assistant
Assist to obtain information or personal records
To advise by explaining information and considerations relating to decision
Assist relevant person to make and express decision/implemented
Will be invalidated where other mechanisms or where there is an Advance Healthcare Directive which is applicable
No reporting requirements but supervision by DDSS

20. Co-Decision-Making
Appointment – must be in writing in a Co-Decision-Making Agreement
Can appoint a ‘suitable’ person to jointly make personal welfare or property and affairs decisions
Requires co-decision-making agreement (regulations) – shall not include the disposal of property by way of gift
Functions and scope of authority of Co-Decision-Maker
To advise by explaining information + considerations relating to decision
Ascertain will and preferences + assist appointer to communicate them
Assist appointer to obtain any information or personal records
Assist appointer to make and express a relevant decision
Endeavour to ensure appointer’s decisions are implemented
CDM entitled to be reimbursed vouched/reported expenses but not remunerated
Restrictions where other mechanisms/Change in capacity to be notified
CDM shall acquiesce in decision + not refuse to sign document UNLESS…..

21. Application for Registration CDMA
CDMaking Agreement not in force until registered
Application for registration:
Must be signed by appointer and co-decision-maker
They must jointly give notice to specified persons
Must be accompanied by
Statement by Appointer – understands implications, wishes to enter into agreement + is aware that may vary or revoke agreement
Statement by CDMaker – understands implications + undertakes to act in accordance with functions, guiding principles, comply with reporting obligations …….
Statement as to why less restrictive DMAssistance Agreement not chosen and existence of any other mechanisms
Statement by medical practitioner/healthcare professional – capacity
References for CDMaker
Details of notices given

22. Registration of CDMA Effect of registration Objections to Registration
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
Register of Co-Decision-Making Agreements
Annual Review of Co-Decision-Making Agreements- capacity
Annual Report by CDM to DDSS on performance of functions

23. 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 AHD and in making order ensure not inconsistent with AHD
In appointing DM Representative court will have regard to:
Known will and preferences
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
Size, nature and complexity of financial affairs/professional expertise required to manage, financial expertise and support available to proposed representative
Court may appoint representative taken from panel provided by DDSS
Suitable person

24. Decision-Making Representation Order
Court will set out powers of representative
Impose duties and attach conditions
Ensure that powers are limited in scope + duration as necessary
May appoint one or more + for different purposes/act jointly/severally
Will require representative/s to state understand + undertake…..
Court may revoke appointment, vary terms or order
DM Representative
Act as agent in relation to a relevant person’s decision
Representative shall be entitled to be reimbursed expenses
Where court directs – can be remunerated where functions connected with trade or profession or exceptional circumstance
Report annually or shorter period if court directs
Must report details of each restraint

25. Decision-Making Representative: Scope
Within 3 months of appointment file with DDSS statement of facts to include schedule of assets + liabilities + projected statement of income + expenditure
Keep accounts and financial records and submit periodic report
May have to provide security in relation to appointment
May not dispose of property by way of gift unless provided in court order.
Court may confer on Director DSS custody, control + management of property. Order may direct money to be lodged in court
Cannot prohibit contact with others
Restrictions where other mechanisms
Must have regard to Advance Healthcare Directive
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

26. Court Applications 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 and
In the opinion of the court, it is in the interests of the relevant person to make order without delay
Court must review declaration as respects capacity + orders made and if necessary revoke or amend an order
Court can seek ‘expert’ reports
Special and general visitors – also appoint a ‘court friend’

27. Interface MHAct 2001 + ADM(C)Act
Any application to the Circuit or High Court in relation to matters arising under ADM(Capacity) legislation as to whether a person who lacks capacity is suffering from a mental disorder, the procedures provided for under the Mental Health Act 2001 shall be followed if there is any proposal to detain person
Refers to involuntary detention
Capacity to be governed by ADM(C) Act
Key: Detention v Treatment

28. 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 will be repealed

29. 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

30. Enduring Power of Attorney

31. Powers of Attorney
Powers of Attorney Act 1996 – in effect an agency arrangement
Ordinary Power of Attorney
Operational when capacity exists
Automatically at an end if person lacks decision-making capacity
Enduring Power of Attorney
Plan ahead – make EPA when have capacity
Only comes into effect when lack decision-making capacity
Assisted Decision-Making (Capacity) Act
There will be an obligation to ascertain will + preferences and to take account of beliefs + values even when registered
Guiding Principles shall apply to EPA

32. What is an EPA?
Donor (person making the EPA) executes a formal document creating an EPA stating he/she intends EPA to come into effect at any subsequent time when he/she lacks capacity or may shortly lack capacity
Appoints an Attorney/s
To look after his/her personal welfare (which will now include healthcare matters)
To manage his/her property and affairs
Authority both to look after his/her personal welfare and capacity to manage his/her property and affairs
The person making the EPA may confer very limited power on the attorney if they so wish or give general authority
Regulations

33. Formalities for EPA Prescribed form for an EPA
Statement by donor that understands the effect of creating an EPA
Legal practitioner must certify that satisfied that donor understood the effect of making EPA and no reason to believe that that the document is being executed as a result of fraud or undue pressure
Registered medical practitioner, must state that in his or her opinion the donor had capacity, with assistance of explanation as may have been given, to understand the effect of creating the EPA (SCR [2015] IEHC 308)
Attorney must sign to confirm that he/she understands and undertakes to act in accordance with functions of an attorney, in accordance with the Guiding Principles, in the interest of donor, duty to account fully, to register the EPA and to report to Dir DSS

34. Suitable Person
Suitable person – extremely important – does not have to be a family member
Some persons cannot act as attorney
Owner or registered provider of nursing home
Can appoint more than one person (jointly/severally)
Donor can appoint a substitute in the event that original dies or becomes incapable of acting
Attorney cannot appoint a substitute or delegate his or her powers

35. Scope of Authority
EPA may confer authority on attorney as donor decides
Restrictions: Personal Welfare Decisions
Shall extend to making decisions on healthcare only in circumstance where donor lacks capacity
No restraint unless in exceptional emergency circumstances
Administration of medication cannot be used to control or modify behaviour – chemical restraint
Restrictions: Property and Affairs
May act in relation to himself or another only where the donor might be expected to meet needs
Limitations of the disposal of property by way of gift
Must submit report at least every 12 months as to performance of functions
Must include details of expenses and remuneration

36. Registration of EPA
To come into effect the EPA must be registered in court
Application by attorney/s
Assessment of capacity
Donor is notified of application
Objection can be made against registration
Instrument not/no longer valid, donor does not lack capacity, attorney is unsuitable, fraud undue pressure was used
Director DSS can make enquiries and where valid grounds shall apply to the court for a determination as to registration

37. Register of Enduring Powers of Attorney
Director of Decision Support Service shall
Establish and maintain a register of EPAs
Members of the public may inspect the register
Director may issue an attested copy of a registered EPA to a person who on application satisfies the Director that the applicant has a good and sufficient reason to be issued with such copy

38. Enduring Powers of Attorney
Existing powers of attorney created under the Powers of Attorney Act 1996 that have been registered will continue to have effect
Existing powers of attorney that have been created under the Act but which have not been registered will come within provisions of new legislation
Once legislation comes into operation 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 registered

39. Decision Support Service

40. 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

41. 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

42. Registers Director shall establish and maintain a Register
Co-Decision Making Agreements
Decision Making Representation Orders
Enduring Powers of Attorney
Advance Healthcare Directives

43. 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, MHC, 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

44. Assisted Decision-Making Capacity Act Timetable for enactment
December 2015
To Come into Operation

45. Useful Contacts Third Age SAGE
SAGE Support and Advocacy for Older People
Sage
Irish Hospice Foundation – Forum for End of Life
Think Ahead project
Think Ahead form

46. Q and A Thank You