Advance Directives – the Irish Approach & Global Alternatives Eilionóir Flynn & Piers Gooding...
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Advance Directives – the Irish Approach & Global Alternatives Eilionóir Flynn & Piers Gooding Centre for Disability Law & Policy National University of
Advance Directives the Irish Approach & Global Alternatives
Eilionir Flynn & Piers Gooding Centre for Disability Law &
Policy National University of Ireland Galway
Slide 2
Irelands Assisted Decision- Making Bill & Advance
Directives Eilionir Flynn
Slide 3
Overview Key elements of Irish legislation Specific provisions
on advance directives Civil society submission to Department of
Health key elements for reform
Slide 4
Irelands Capacity Bill Guiding principles & definition of
capacity Assisted Decision-Making Agreements Co-Decision-Making
Agreements Decision-Making Representatives Informal Decision-Makers
Powers of Attorney (financial & healthcare) Advance Directives
(at Committee Stage)
Slide 5
Implementation Structure Office of the Public Guardian
registering agreement, supervision, complaints, advice Circuit and
High Court granting orders, hearing disputes
Slide 6
Advance Directives Equally applicable to physical & mental
health Based on a mental capacity model but no front- end test of
capability Refusal of all medical treatment permitted, including
potentially life saving treatment No refusal of basic care includes
warmth, shelter, oral hydration, oral nutrition Not legally binding
in involuntary detention
Slide 7
Civil Society Response Move from mental capacity to legal
capacity Make binding in involuntary detention Only over-ride where
imminent and serious risk to life but not in end-of-life decisions
Respecting 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 choice
Slide 8
Slide 9
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 individuals
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.
Slide 10
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 individuals 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 persons 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.
Slide 11
Mental Health Advance Health Directives: Australia and New
Zealand (+ Canada and Germany) Piers Gooding
Slide 12
New Zealand
Slide 13
The National Mental Health Commission of New Zealand, est. 1998
as an independent statutory authority
Slide 14
New Zealand The National Mental Health Commission of New
Zealand, est. 1998 as an independent statutory authority National
Mental Health Sector Standards (2001) but has not been harmonised
with the CRPD
Slide 15
New Zealand The National Mental Health Commission of New
Zealand, est. 1998 as an independent statutory authority National
Mental Health Sector Standards (2001) but has not been harmonised
with the CRPD 2006 International forum on No Force Advocacy
Slide 16
New Zealand The National Mental Health Commission of New
Zealand, est. 1998 as an independent statutory authority National
Mental Health Sector Standards (2001) but has not been harmonised
with the CRPD 2006 International forum on No Force Advocacy
Produced comprehensive, publicly accessible materials that provide
analysis and advice on advance directives
Slide 17
New Zealand The National Mental Health Commission of New
Zealand, est. 1998 as an independent statutory authority National
Mental Health Sector Standards (2001) but has not been harmonised
with the CRPD 2006 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
Slide 18
New Zealand The National Mental Health Commission of New
Zealand, est. 1998 as an independent statutory authority National
Mental Health Sector Standards (2001) but has not been harmonised
with the CRPD 2006 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 uptake
Slide 19
Australia
Slide 20
Federation of 8 jurisdictions, considerably varied
Slide 21
Australia Federation of 8 jurisdictions, considerably varied
Reservation and Declaration of the CRPD to maintain substituted
decision-making
Slide 22
Australia Federation of 8 jurisdictions, considerably varied
Reservation and Declaration of the CRPD to maintain substituted
decision-making Australian Health Ministers Advisory Council have
created a National Framework for Advance Care Directives
Slide 23
Australia Federation of 8 jurisdictions, considerably varied
Reservation and Declaration of the CRPD to maintain substituted
decision-making Australian Health Ministers Advisory Council have
created a National Framework for Advance Care Directives Victoria
has just introduced a Bill to formalise mental health ADs with low
enforceability; Western Australia has informal ADs with low
enforceability (doctors must give regard to)
Slide 24
Australia Federation of 8 jurisdictions, considerably varied
Reservation and Declaration of the CRPD to maintain substituted
decision-making Australian Health Ministers Advisory Council have
created a National Framework for Advance Care Directives Victoria
has just introduced a Bill to formalise mental health ADs with low
enforceability; Western Australia has informal ADs with low
enforceability (doctors must give regard to) Towards a CRPD
supported decision-making regime informal safeguards built into
policy.
Slide 25
Where do we look for CRPD-based mental health Advance
Directives?
Slide 26
Canada
Slide 27
-Varied across Canada; focus shifts from treatment and
dangerousness -Main shortcoming with both is lack of access to
adequate support -Ontario 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 Canadian Human Rights Act
Slide 28
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 2009
Slide 29
New Law and Ethics in Mental Health Advance Directives --
Penelope Weller, 2012
Slide 30
Things to keep in mind All currently rely on a (discriminatory)
mental capacity test Generally, a low uptake on advance directives
To increase: Build Awareness-Raising Into Proposals Link to
recovery and person-centred care Ensure Process from design to
implementation is undertaken with people with psychsocial
disabilities