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NSW ASSOCIATION FOR MENTAL HEALTH INC Submission: Living Wills

NSW ASSOCIATION FOR MENTAL HEALTH INC

SUBMISSION

LIVING WILLS OR ADVANCE DIRECTIVES

Our response to the Key Issues for Comment contained in your Discussion Paper follows. You will note that throughout this document we have referred to "Advance Directives" as we feel strongly that this is a preferable term, for the reasons stated below.

General:

We agree that Advance Directives do have the potential to further ensure the rights of people with a mental illness.

In NSW they are best placed in the Guardianship arena under the aegis of the Guardianship Tribunal. Recent changes to Guardianship legislation in NSW which provide for people to appoint an Enduring Guardian would cover people needing mental health care.

There should really be no reason why people who are disabled by mental illness cannot be treated under guardianship legislation rather than the Mental Health Act. Guardianship provides for a legally appointed decision-maker who is acceptable to the person to make medical and other decisions if necessary. Mental health legislation does not currently provide for a legal advocate or an independent person to make decisions if the person cannot.

Resource implications: some people may not have a close friend or acquaintance who could possibly be a guardian. The role of guardian or decision-maker does require some effort and time and this may place some burden on community agencies or social networks of the person. The process of developing an Advance Directive is also time consuming but should be part of normal mental health casework. Some skill and knowledge is needed to develop a pro forma Advance Directive. Access to community legal services or other advisory services is necessary and may create barriers for some people.

Terminology

The term Living Will has been associated with end-of-life decisions, eg euthanasia. Advance Directive, we think, is a better term since it implies directions made in advance of the incapacity.

Decision making

The kinds of decisions that could be made in advance are:

  • Symptoms or combinations of symptoms which constitute incapacity for this particular person
  • Who will take responsibility for recognising these signs and taking the next step
  • Who should be informed
  • Who would you definitely not like to be informed
  • What should happen if these signs occur
  • Previous history, what has helped in the past
  • What treatment do you prefer
  • What treatment do you refuse to have
  • What staff would you prefer to treat you
  • What staff would you prefer not to treat you
  • Which hospital or facility would you prefer to be treated in
  • If you were being treated at home, how often would you like to be visited
  • If a staff member comes to visit you in your home, how would you wish them to identify themselves to others
  • Would you like to discuss the implementation of this plan (or otherwise) subsequent to an episode of mental illness
  • How often this directive should be revised and under what circumstances, eg change of staff, closure of hospital, change of relationships

Substitute decision-makers

If difficult decisions have to be made, then the relationship with the decision-maker should be considered. For example, a partner may find it difficult to make decisions, whereas someone less close may find it easier.

Substitute decision-makers need to have some skills. For example, being reasonably assertive with health care workers, understanding and sensitivity of the issues around mental health, knowledge of mental health services and treatment.

Substitute decision-makers can introduce wider options for the person. Health workers may not have the range of knowledge needed for a particular person's cultural and social wellbeing. A decision-maker who is trusted by the person may be in a better position to persuade the person about particular treatments.

Potential for substitute decision-maker to make inappropriate decisions.

If the substitute decision-maker is appointed under the guardianship legislation there is a legal mechanism to remove the decision-maker by the Guardianship Tribunal. Other people involved in the person's care, or the person themselves, can apply to the Guardianship Tribunal to have the Enduring Guardian changed.

Participation and consultation

Consumers who participate in decision-making are more likely to abide by the decisions made. Advance Directives can facilitate greater participation and consultation in care by giving directions to health care workers who may not previously have been aware that these options exist for this person. Advance Directives can regulate the interaction between consumers and providers by setting out rights and responsibilities of each party. To be effective, Advance Directives need to contain a reasonable amount of information and be carefully thought out with consideration to the circumstances likely to surround an episode of mental illness.

Individual Treatment Plans

ITPs are essential to make an Advance Directive effective. The more detail that can be agreed upon before a crisis, the less uncertainty and confusion will result. Everyone is different and an individual treatment plan gives much more control to the person when they are unable to make decisions. A person who participates in drawing up the plan is more likely to agree and accept particular aspects of the treatment.

An Advance Directive by could facilitate discharge planning:

  • Anticipating problems in access to treatment
  • Providing continuity of care
  • Providing reassurance and reducing anxiety about each stage of the process of treatment
  • Returning to the community and employment is more likely to be facilitated by an Advance Directive by ensuring that confidentiality is maintained where necessary and that people who need to be informed have been informed

Advocacy

Understanding what a person would want and whom the person will trust are essential elements in making treatment decisions. The Guardianship Tribunal needs to know what the wishes of the person might be and an Advance Directive is an excellent tool for this. Informally, an Advance Directive can serve to remind the person what to do in a crisis – often without formal intervention.

Administration

Attached is a sample "Acute Care Plan" developed by consumers in Central Sydney Area.

There needs to be a mechanism in place whereby an Advance Directive is registered and regularly reviewed.

Unlike a Power of Attorney which comes into effect when the person loses capacity, and remains in place until the person regains capacity, an Advance Directive needs to be a living document which is constantly changed, depending upon the person's circumstances. It is important that control be returned to the person as soon as possible after an episode of illness.

There should be provision for review of decisions made by the decision-maker and removal and replacement of the decision-maker if necessary.

Other considerations

People who have been involuntarily treated often have feelings of anger and betrayal following such treatment. This often impedes future treatment and may prevent acceptance of the need to plan future treatment. Advance Directives can be a tool to facilitate the planning of future treatment and, as far as possible should be designed to avoid involuntary or coercive treatment.

28 January 1999

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