Eilionóir Flynn amp Piers Gooding Centre for Disability Law amp Policy National University of Ireland Galway Irelands Assisted DecisionMaking Bill amp Advance Directives Eilionóir Flynn ID: 536269
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Slide1
Advance Directives – the Irish Approach & Global Alternatives
Eilionóir Flynn & Piers Gooding
Centre for Disability Law & Policy
National University of Ireland GalwaySlide2
Ireland’s Assisted Decision-Making Bill
& Advance DirectivesEilionóir FlynnSlide3
Overview
Key elements of Irish legislationSpecific provisions on advance directives
Civil society submission to Department of Health – key elements for reformSlide4
Ireland’s Capacity Bill
Guiding principles & definition of capacityAssisted Decision-Making AgreementsCo-Decision-Making AgreementsDecision-Making RepresentativesInformal Decision-MakersPowers of Attorney (financial & healthcare)
Advance Directives (at Committee Stage)Slide5
Implementation Structure
Office of the Public ‘Guardian’ registering agreement, supervision, complaints, adviceCircuit and High Court – granting orders, hearing disputesSlide6
Advance Directives
Equally applicable to physical & mental healthBased on a mental capacity model but no front-end test of capabilityRefusal of all medical treatment permitted, including potentially life saving treatmentNo refusal of ‘basic care’ – includes warmth, shelter, oral hydration, oral nutrition
Not legally binding in involuntary detentionSlide7
Civil Society Response
Move from mental capacity to legal capacityMake binding in involuntary detentionOnly over-ride where ‘imminent and serious risk to life’ but not in end-of-life decisionsRespecting a directive should not lead to more restrictive approaches e.g. more and prolonged involuntary detention, restraint and seclusion, where a person refuses treatment
Introduce ‘Ulysses’ clause
based on choiceSlide8Slide9
Guiding Principles for CRPD
Everyone (regardless of decision-making ability) has the right to make a (written) advance directive and should be given the opprotunity to do so. A choice of instructional, proxy and a combination of both forms of advance directives should be legislated to accommodate various preferences. Support should be provided to complete the advance directive and makers should be encouraged to review advance directives regularly.
The point at which an advance directive enters into force (and ceases to have effect) should be decided by the person in the text of the directive and should not be based on a medical assessment that the person lacks mental capacity.
Once an advance directive has entered into force, third parties should be under a legal obligation to respect them. Advance directives should continue to have effect in situations of involuntary detention.
There may be an exception to the obligation to respect an advance directive where there is an imminent threat to the life of the person. ‘Imminent threat to the life of the person’ should be strictly construed and should apply equally in physical and mental healthcare.
The refusal of life-sustaining treatment should also be addressed in the legislation.
Authorisation to breach an advance directive must be provided by the court and priority should be given to delivering these decisions as quickly as possible, given the urgent nature of the circumstances.
The individual can specify what will constitute revocation of an advance directive in the text of the directive (whether revocation must be oral/ or in writing/other).
All advance directives can be revoked at any time by the person to whom it pertains – there will be no distinction between advance directives for mental health treatment and advance directives for physical health treatment in this respect. There should be the possibility for all advance healthcare decisions to be integrated.
An individual can choose to insert a ‘Ulysses clause’ into their advance directive, stating that their written will and preference as contained in the directive takes precedence over the individual’s own verbally expressed will and preference once the advance directive has entered into force. The Ulysses clause should only be used by individuals who clearly want their advance directive wishes to stand during specifiied periods and should be subject to independent execution safeguards to ensure it reflects the will and preference of the person. Slide10
CRPD Compliant Advance Directives
The same registration criteria would apply to advance directives as to other support agreements (e.g. assistance agreements) under the Bill.Where a person is nominated in the text to ensure that an advance directive is carried out, their duties must be clearly stated in the text of the Bill, and must include a requirement not to exert undue influence on the author of the advance directive. The conflict of interest in relation to healthcare providers acting should be stipulated in the legislation. The legislation should allow one or more nominated persons to be appointed for different decisions.
Where a person makes specific positive request(s) in an advance directive (e.g. for a specific type of medication only to be administered or to only be treated in a specific hospital or by a specific doctor) the same standard should be used to decide whether this can be honoured in both physical and mental health care.
Clear accountability and monitoring mechanisms should be provided to ensure that advance directives are adhered to. The Mental Health Commission and/or the Office of Public Guardian should have an oversight role in the monitoring of advance directives in the specific context of mental health. There is need for an independant adjudicator, for example an Ombusman, so that people who believe their advance directive was not adhered to, have a point of redress and independent adjudication. This needs to be a body independent of mental health services, or HIQA who do not have a role in considering an individual’s experiences of care.
An obligation should be placed on health care providers to find out whether someone has an advance directive before treating them. There should be serious penalties where a health practitioner or any other third party acts against the person’s wishes as stated in an advance directive.
There should an online registry of advance directives, accessible to health service providers when needed. However, data protection obligations to respect individuals’ privacy must be met.
Court decisions determining whether advance directives are overidden must be published in order to have a body of knowledge, for example to help in defining what constituted a ‘life threatening situation’ or ‘imminent danger’, etc. However, it may be necessary to anonymise the details of the individuals in these cases given the sensitive nature of the issues under discussion.Slide11
Mental Health Advance Health Directives: Australia and New Zealand (+ Canada and Germany)
Piers GoodingSlide12
New ZealandSlide13
New Zealand
The National Mental Health Commission of New Zealand, est. 1998 as an independent statutory authoritySlide14
New Zealand
The National Mental Health Commission of New Zealand, est. 1998 as an independent statutory authorityNational Mental Health Sector Standards (2001) but has not been harmonised with the CRPDSlide15
New Zealand
The National Mental Health Commission of New Zealand, est. 1998 as an independent statutory authorityNational Mental Health Sector Standards (2001) but has not been harmonised with the CRPD2006 International forum on ‘No Force Advocacy’Slide16
New Zealand
The National Mental Health Commission of New Zealand, est. 1998 as an independent statutory authorityNational Mental Health Sector Standards (2001) but has not been harmonised with the CRPD2006 International forum on ‘No Force Advocacy’Produced comprehensive, publicly accessible materials that provide analysis and advice on advance directivesSlide17
New Zealand
The National Mental Health Commission of New Zealand, est. 1998 as an independent statutory authorityNational Mental Health Sector Standards (2001) but has not been harmonised with the CRPD2006 International forum on ‘No Force Advocacy’
Produced comprehensive, publicly accessible materials that provide analysis and advice on advance directives
Developed complaints process to report non-compliance to Health and Disability CommissionSlide18
New Zealand
The National Mental Health Commission of New Zealand, est. 1998 as an independent statutory authorityNational Mental Health Sector Standards (2001) but has not been harmonised with the CRPD2006 International forum on ‘No Force Advocacy’Produced comprehensive, publicly accessible materials that provide analysis and advice on advance directives
Developed complaints process to report non-compliance to Health and Disability Commission
Weller reports (2012) there appears to be little interest among service users, a very low uptakeSlide19
AustraliaSlide20
Australia
Federation of 8 jurisdictions, considerably variedSlide21
Australia
Federation of 8 jurisdictions, considerably variedReservation and Declaration of the CRPD to maintain substituted decision-makingSlide22
Australia
Federation of 8 jurisdictions, considerably variedReservation and Declaration of the CRPD to maintain substituted decision-makingAustralian Health Ministers Advisory Council have created a National Framework for Advance Care DirectivesSlide23
Australia
Federation of 8 jurisdictions, considerably variedReservation and Declaration of the CRPD to maintain substituted decision-makingAustralian Health Ministers Advisory Council have created a National Framework for Advance Care DirectivesVictoria has just introduced a Bill to
formalise
mental health ADs with low enforceability; Western Australia has informal ADs with low enforceability
(doctor’s must ‘give regard to’
)Slide24
Australia
Federation of 8 jurisdictions, considerably variedReservation and Declaration of the CRPD to maintain substituted decision-makingAustralian Health Ministers Advisory Council have created a National Framework for Advance Care DirectivesVictoria has just introduced a Bill to formalise
mental health ADs with low enforceability; Western Australia has informal ADs with low enforceability
(doctor’s must ‘give regard to’
)
Towards a CRPD supported decision-making regime – informal safeguards built into policy.Slide25
Where do we look for CRPD-based mental health Advance Directives?Slide26
CanadaSlide27
Canada
Varied across Canada; focus shifts from ‘treatment’ and ‘dangerousness’Main shortcoming with both is lack of access to adequate supportOntario has equality-based provisions around consent and capacity
Strong emphasis on wishes and preferences.
Fleming v Reid (1991)
– person was detained under mental health law but not treated
The court drew on the right to bodily integrity captured in section 7 of the Canadia
n
Human Rights ActSlide28
Advance Directives - Germany
‘12 legal
changes
made non-compliance with advance directives a criminal
offence
Constitutional Ruling in two
states invalidated certain powers under mental health legislation
There a three different forms of advance directives: power of
attorney,
advance guardianship directive and patient wills
.
Advance patient wills have only been
recognised
in statutory 2009Slide29
New Law and Ethics in Mental Health Advance Directives -- Penelope Weller, 2012Slide30
…Things to keep in mind
All currently rely on a (discriminatory) mental capacity testGenerally, a low uptake on advance directivesTo increase: Build Awareness-Raising Into ProposalsLink to recovery and person-centred
care
Ensure Process – from design to implementation – is undertaken with people with
psychsocial
disabilities Slide31