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. Compulsory 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 ailable 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