Discussion Paper: Living Wills

Discussion Paper: Living
Wills

Published 1998

The Commission is currently not undertaking work directly in relation to living wills, This page is maintained for historical interest.

Submissions
in response to this paper are also available on line

Contents

Introduction

Proposed
purpose

Where
should comments be sent

What
is a 'Living Will'?

Reasons
for discussing living wills

Status
of living wills

How
can a person make a living will?

When
could a living will be invoked?

Can
a living will be revoked or changed?

How
can capacity be determined?

Legislative
considerations

Advocacy
implications

Limitations
of Living Wills

Benefits
of having a living will

Key
Issues for Comment

References

Introduction

The
Australian Human Rights Commission has undertaken a series
of consultations to identify a number of important issues and areas requiring
reform in the field of mental health. Consultations suggest that there
is widespread interest and support for the application of 'Living Wills'
to the area of mental health.

Proposed
purpose

This paper is intended to

• promote
  discussion of the potential benefits that may be gained by providing
  for living wills in the area of mental health
• identify
  difficulties or barriers for the effective implementation of living
  wills
• seek
  information on research or policy development which has been conducted
  or is being considered in this area.

What
is a 'Living Will'?

A living will is a voluntary statement outlining the types and conditions
of medical care that a person would prefer in a given situation prior to
requiring care. A person may also nominate one or a number of substitute
decision-makers (Power of Attorney) to make decisions of their own behalf.
A living will sets out a consumer's wishes in relation to treatment decisions
in advance. As the discussion paper by the Office of the Public Advocate
(Western Australia) outlines, living wills identify

• when,
  and under what conditions, the agreement or Power of Attorney should
  take effect
• who
  is to have responsibility for substitute decision-making and for what
  decisions
• what
  cross-consultation is to occur and
• the
  circumstances when revocation may be possible.

A living
will may also cover financial, personal and medical decisions concurrently
(1996:31).

Reasons
for discussing living wills

Commission
consultations with consumers, carers and advocates suggest that decision-making
and informed consent in the area of mental health are issues of considerable
concern. Participation and consultation are cornerstones of the National
Mental Health Strategy
and are recognised by most legislative frameworks and policy statements.
However, participation in decision-making and the practice of informed
consent are restricted in practice for a number of reasons.

Mental health service
consumers who are very ill or are in hospital are often unable to make
decisions in their own best interests. The responsibility for decision-making
is transferred to a health professional, court or tribunal.

Incapacity often restricts
the opportunities for mental health service consumers to participate in
decision making and therefore consent to or refuse treatment. However,
consultations have emphasised that incapacity is not necessarily universal.
Mental health service consumers may have incapacity in one area or at
one time but capacity in another. An assumption of universal or permanent
incapacity restricts the rights of and opportunities for consumers to
participate in decision-making.

The United Nations
Principles
for the Protection of Persons with Mental Illness and for the Improvement
of Mental Health Care 1991
recognise exceptional circumstances where the right to informed consent
can be waived on the ground that people may be of imminent or immediate
risk to self or others or that treatment and detention are in the best
interests of mental health service consumers (Principle 11.1).

As most Mental Health
Acts stipulate these two grounds as the basis for involuntary treatment
and detention, it has been suggested to the Commission that the right
to informed consent and involvement in decision-making are often effectively
ignored. As the National Community Advisory Group publication 'Let's
Talk About Action' states, 'allowing consumers to reach a point of
crisis [and having to be involuntarily detained and treated] effectively
removes their ability to negotiate and make choices about their treatment'
(NCAG 1994:9).

Living wills may have
a role in addressing the tension between the 'best interests' of consumers
as decided by health professionals, courts and tribunals and the 'best
interests' of consumers as decided by consumers.

There appears not to
be a widespread or systematic practice in Australia of developing individual
treatment plans that involve consumers and other interested parties. A
living will may provide a structure for developing a preferred plan which
identifies medication, side-effects of current and past medications,
primary health concerns and other special needs such as diet, allergies
or religious concerns. A living will might also outline a preferred action
plan that identifies non-medical forms of care, expected periods of illness,
illness patterns, intervention strategies and preferences for mental health
staff taking into account considerations regarding gender, profession
or particular individuals. Concerns such as contacting employers or maintaining
housing may also be included and accounted for. These issues may apply
either to institutional or community settings.

A living will may help
a consumer to control care options. A living will need not be legally
binding to perform useful functions in informing and influencing treatment
decisions and disputes between interested parties.

Status
of living wills

A
living will is not a legally binding document in itself, but may be given
legal recognition and status by mental health and other legislation. Under
current legislation a living will would not be binding on persons nominated
as decision makers or on medical practitioners or other parties involved
in care and treatment. However, the documentation of express wishes may
be crucial should a dispute about treatment come before a Guardianship
Board, tribunal or court (AFAO 1993). A living will is also likely to
be strongly persuasive to all those making decisions about mental health
care. It has been argued that medical practitioners in particular are
generally required to abide by living wills unless they conflict with
other laws or professional responsibilities (Jaffe
1998).

How
can a person make a living will?

No
specific document has been developed as a model for a living will in the
area of psychiatric disability. However, one could still be made, preferably
with legal, medical and other relevant professional advice, for example
from a social worker, counsellor or psychologist). It is envisaged that
a living will would be formally recognised and registered by a Guardianship
Board or Mental Health Review Tribunal and made available to relevant
parties - such as the consumer's GP and local mental health facility.

When
could a living will be invoked?

A
living will could be invoked in a number of circumstances when a consumer
is not capable of giving valid consent: at certain points as determined
by the consumer in the document or otherwise, or on the occurrence of
specific symptoms or particular relapse signs identified in the document.

Can
a living will be revoked or changed?

A
living will could be revoked or changed at any time when the person who
makes it has the capacity to do so.

How
can capacity be determined?

The
Model Mental Health Legislation outlines the determination of capacity
as requiring 'that a person be capable of understanding the specific elements
[of a living will], be capable of understanding the effects [of a living
will] and be able to communicate' decisions to others involved in the
administration of a living will (1996:81).

Legislative
considerations

Consultations
and the Office of the Public Advocate (WA) discussion paper suggest that
living wills would sit best within guardianship legislation. There would
need to be clear provisions on the status of living wills, prior decision
making, roles and obligations and the arbitration or resolution of conflicting
decisions and interests.

Advocacy
implications

As
a living will documents the decisions and preferences of a consumer it
may be used to inform the role and decisions of an advocate. A living
will may also assist statutory advocacy where a consumer is unable to
advise an advocate about his or her preferences and choices. Nomination
within a living will of a substitute decision-maker for particular purposes
also enables the consumer to nominate a trusted third party who can advocate
on his or her behalf. Directions may also be included in a living will
to ensure that a substitute decision-maker adheres to the wishes of the
consumer. Living wills may also assist social workers and case managers
when making representations to hearings and tribunals. Boards, tribunals
and courts may also be assisted by a living will in reaching decisions
about the 'best interests' of a mental health consumer.

Limitations
of Living Wills

Living
wills have been criticised as having limited effect in practice on the
basis that they are 'limited by inattention to them and by decisions to
place priority on considerations other than a patients autonomy', that
there is 'little evidence that [living wills] are associated with enhanced
communication', and that living wills are 'infrequently available and
have little impact on the pattern of care' (Hite,
1998).

The same author has
argued that too much emphasis can be placed on advance directives as an
event rather than a process. The effects of this is to reduce a living
will to a documented form rather than a process of before and after care
planning (Ibid).

Another important consideration
is the extent to which living wills are restricted by the limitations
of what patients can ask for in advance (Hite 1998).

Concern has also been
raised that substitute decision-makers are able to access inappropriate
care or refuse appropriate care for those that they represent and may
cause more harm than good (Jaffe 1998).

Living wills are limited
to decision making and do not guarantee access to services or force services
to provide care. If psychiatric services are not accessible and community
based services are fragmented then the quality of care is compromised.
The effectiveness of a living will, therefore, is restricted by the availability
of care options that decisions can be made about.

Benefits
of having a living will

In
spite of these limitations, the drafting of a living will may have a number
of positive effects. Living wills can facilitate important interaction
between consumers and health professionals, legal professionals and other
interested parties. Interaction may lead to increased consumer confidence
in dealing with service providers and provide the basis for effective
information exchange.

Commission
consultations note that living wills may allow consumers to 'determine
how to make sense of themselves and manage their illness'. They can enable
consumers to 'learn illness patterns, early intervention strategies and
relapse flag posts and markers'. As such, consumers can become involved
in determining the resources they need to get better and take responsibility
for treatment decisions. Living wills draw on the knowledge and expertise
of consumers and carers which may be empowering in itself. The process
of making a living will encourages participation and consultation in the
treatment and management of psychiatric disabilities. Consultations with
consumers and carers suggest that participation and consultation are often
discouraged rather than encouraged. Living wills may assist consumers
and carers in engaging with health professionals.

Living
wills may also provide clearer guidelines for before and after care strategies
and services which may otherwise be overlooked, for example discharge
planning. The documentation of personal histories and information such
as past effects of medication or past homelessness may assist in better
before and after care strategies. Important links between different aspects
of a person's life may be established so that different needs such as
employment or housing may be accounted for. On this basis, living wills
appear to have potential to improve care and quality of life in periods
when a person is well.

The
concept of an alternative rights carrier is central to living wills. Compulosry
treatment decisions suspend civil rights of the consumer and do not replace
them or offer an advocate to make decisions on the person's behalf. Living
wills may assist carers, friends or other interested third parties to
advocate on behalf of a consumer (Smith 1998:128).

Key
Issues for Comment

The
Commission aims to support and encourage initiatives and projects that
ensure the human rights of people with a mental illness. It would welcome
information about current work being undertaken in regard to living wills.

The
following list of questions and issues is laid out in two parts. The first
part invites general comment. The second part outlines a number of specific
issues for comment. Submissions may address one, some or all of the areas
listed. The Commission would also welcome submissions about other elements
of living wills that have not been addressed.

General

Do
living wills have the potential to further ensure the rights of people
with a mental illness?

• Is
  there a need for living wills in the area of mental health?
• What
  might be the uses, benefits and limitations of living wills?
• Who
  should living wills be made available to?
• What
  are the resource implications for the introduction of living wills in
  the area of mental health?
• If
  living wills are of sufficient interest to those involved in mental
  health to merit further research, which body (or bodies) would be best
  placed to be responsible for developing legislative and administrative
  frameworks for the implementation of living wills?

Terminology

Consultations
with consumers suggest problems with the term 'living will'. What alternative
terms could be used?

Decision
making

What
kinds of decisions could be made in advance?

• Are
  there limits to what consumers can ask for in advance?
• What
  resources would be required to assist consumers to make advance decisions?

Substitute
decision-makers

How
would a substitute decision maker be of benefit to consumers?

• What
  obligations and responsibilities would substitute decision-makers have?
• Would
  it be desirable to have different substitute decision-makers for different
  matters?
• How
  might the potential be avoided for a substitute decision-maker to deny
  access to appropriate care or approve access to inappropriate care?

Participation
and consultation

What
are the benefits of consumers participating in decision-making?

• Could
  living wills facilitate greater participation and consultation in care?
• How
  might living wills ensure that interaction between consumers and providers
  is beneficial?
• How
  might living wills ensure that adequate information exchange occurs?

Individual
treatment plans

Is
an individual treatment plan necessary to make a living will effective?

• Consultations
  suggest that individual treatment plans are not being developed. Given
  this evidence what would have to happen to ensure that treatment plans
  were developed?
• Could
  living wills enable better before and after care strategies for consumers?
• Could
  living wills enable better discharge planning and ensure the benefits
  of discharge planning?
• Could
  living wills ensure that different needs such as maintaining employment
  or housing are accounted for?

Advocacy

• How
  might advocacy services benefit from the availability of a living will?
• Could
  a living will enable a consumer to advocate on his or her own behalf?

Administration

• What
  might a living will look like?
• What
  circumstances would invoke or revoke a living will?
• What
  kind of process would need to take effect once a living will was invoked?
• What
  safeguards would be required to ensure that living wills were available
  and validated?
• What
  kind of process could ensure that living wills were treated as a process
  rather than an event?
• Is
  the determination of capacity as outlined in the Model Mental Health
  Legislation adequate? If not, how should capacity be determined?

Resources

• What
  resources would be required to implement and administer living wills?

Legislative
and service considerations

• Would
  living wills have the same benefits across all jurisdictions?
• Should
  provisions be made to take account of local and regional differences?
• What
  legislative frameworks could accommodate living wills?

Other
interests and obligations

• What
  obligations would living wills place on health professionals, courts
  and tribunals?
• How
  would living wills affect the decisions of professionals and decision-making
  bodies?
• What
  are the benefits and limitations of living wills being legally binding?

Workability

• What
  current difficulties would have to be overcome to enable consumers to
  benefit from living wills?

References

Australian
Federation of AIDS Organisations (AFAO), 1993, Legal Aspects of Treatment
Decisions.

Hite,
C. 1998 Advance directives & end of life decisions: available
at http://www.euthanasia.org/hite.html

Jaffe,
D.J. 1998 Health Care Proxies and a potentially 'easier' way to get
someone help before they become a danger to self or others: available
at http://www.schizophrenia.com/ami/coping/proxy.html

National
Community Advisory Group 1994 'Let's Talk About Action', Canberra.

Office
of the Public Advocate, with assistance from the Guardianship Administration
Board (Western Australia) 1996 Proposed Changes to the Guardianship
and Administration Act (WA) 1990, pp.31-32.

Smith,
M., 1997 'Living Wills for People with a Psychiatric Disability' in Centre
for Health Law, Ethics and Policy, 1997, Proceedings of the Conference,
Mental Health for All: What's the Vision? University of Newcastle,
pp.124-128.

United
Nations, 1991, Principles for the Protection of Persons with a Mental
Illness and for theImprovement of Mental Health Care: available at
gopher://gopher.un.org/00/ga/recs/46/119