RESPONSE TO THE DISCUSSION PAPER: LIVING WILLS: OPGNSW

Office of the Public Guardian

New South Wales

Submission

Human Rights and Equal Opportunity Commission

Discussion Paper: Living Wills

8 February, 1999

Introduction

The Public Guardian of New South Wales is the legal guardian of over 1300 people with decision making disabilities. Of these approximately 150 have a diagnosed mental illness. The arrival of the commission's discussion paper on living wills is therefore a welcome opportunity to consider the issue of living wills and people with an incapacity to make decisions.

It is an essential foundation principle for all services to enable people with disabilities to make whatever decision they can competently make. This is extremely important in the area of medical and lifestyle decisions. As a substitute decision maker the Public Guardian is always conscious of the imperfections of guardianship in such decision making. Whilst a decision can be made based on the best interests principle, and sometimes the substituted judgement principle, the two commonly held principles for substitute decision makers, nothing can replace the decision of the person themself, made whilst competent.

The flexible use of guardianship has been one attempt of this office to resolving some of the dilemmas highlighted by the interaction of episodic illness which affects a person's decision making abilities and guardianship. Where possible, and appropriate, this office has attempted to support the person under guardianship to make decisions for themselves. Balancing dignity of risk and duty of care has been a crucial element to disability service provision in this regard. Just because a legal guardian has the legal authority and power to do a certain act does not mean one has to exercise such powers.

The introduction of enduring guardianship provisions to the Guardianship Act (NSW) 1987 which commenced in February, 1998 has gone some way to respecting the will of people who have been competent at the time of appointment in respect of who should be their guardian if they should lose the capacity to make decisions and what powers that guardian should have. Although not formally an advance directive or living will, such a document, properly executed legally appoints a substitute decision maker without the need to access the Guardianship Tribunal or the Supreme Court.

The introduction of enduring guardianship has helped clarify that enduring powers of attorney in New South Wales could not be executed to appoint an attorney with substitute decision making powers in respect of the person's person, only their estate. It also allowed for the person themself to make the decision of who should be their substitute decision maker, whilst also allowing for review by the Guardianship Tribunal or Supreme Court if this was required to protect the person. In this way the person's autonomy has been respected and promoted.

It is of note that in Canada there has been for some time provisions for what is known as a Ulysees Agreement which is similar to the living will concept put forward in the discussion paper. The commission may wish to seek further information on this type of agreement if it has not done so already.

General

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

Living wills, if given statutory authority, have significant potential to ensure the wishes of a person are abided by and their right to make decisions for themselves protected. They provide for the person to be involved more formally in planning their life, particularly prior to becoming unwell, and losing the capacity to make certain decisions. If they are not provided for within statute and health care professionals required to take notice of them it is unlikely that they will have as much impact. It is the Public Guardian's experience that even as the legal guardian of people with mental health problems it is often difficult to gain co-operation from mental health professionals in developing plans or to have medical practitioners in this field seek consent for the use of medication as required under Part 5 of the Guardianship Act 1987 (NSW).

Despite well accepted principles about people being involved in decision making and recent judgements concerning informed consent these areas are still poorly addressed within the mental health system. The creation of yet another legal mechanism such as living wills has much potential to protect rights. However, without an acceptance of their utility and respect of their authority by relevant professionals, associations and government agencies it may be unlikely that they will be of any practical benefit short of providing a trigger for legal action should their provisions be ignored without valid reason.

Is there a need for living wills in the area of mental health?

The Office of the Public Guardian strongly supports continuing discussion about the use of living wills in the area of mental health. It is essential that there is a continuum of legal mechanisms through which to ensure a person with a disabilities' rights are protected. Guardianship, and in particular the appointment of an enduring guardian, can assist in this however, guardianship can be perceived as a blunt instrument which can take away someone's rights and vest them in another for a significant period of time. A living will may be able to address this bluntness and enable a more refined decision making process to be put in place. It is also possible that both instruments could work effectively together.

At one extreme an appropriately empowered guardian could be informed and possibly even required to implement the wishes of the person under guardianship if they have expressed any in a living will. They might even be able to remain silent about those matters which are already covered by such an instrument, dealing with matters which have not been foreseen and decided upon. The major benefit of living wills apart form the person making their own decisions is that they may be able to better meet the needs of someone who has episodic illness and who does not have a permanent incapacity to make decisions. Such a document would allow for the ebb and flow of illness more readily than guardianship and prevent unnecessary intrusion into the person's life by a Tribunal, Court and a guardian.

What might be the uses, benefits and limitations of living wills?

Clearly the use of living wills would enable the person with a mental health problem to clearly state in advance of an episode of illness what they wished to happen in the event of certain situations occurring. They would assist the person to exercise their rights to participate in a meaningful dialogue about their care and treatment with health care professionals, and others who support them when they are unwell. Currently the provisions of the Guardianship Act 1987 (NSW) allow for substitute decision makers to make decisions on behalf of a person with a disability, incapacity and need for a guardian. Apart from the appointment of a guardian by the Guardianship Tribunal or Supreme Court the Act allows for the exercise of medical and dental consent authority by a "person responsible". This statutory role enables the attainment of a substitute consent by a health care professional without a need to go through a formal legal hearing. However the person responsible's powers do not stretch to cover any other personal or lifestyle decisions. A living will therefore would be able to provide for the other areas of the person's life as well without the need for a hearing of any sort. They would link well with the provisions of the Guardianship Act in allowing for a person responsible to consent to medical or dental treatment which has not been foreseen by the person and for which the person has not been able to provide a valid consent. This of course is a limitation of such an instrument. It is not possible to foresee all issues which might arise, e.g., different medications might need to be used which are not known at the time of the living will being executed, the person's view may change over time and not be reflected in the document, new information about risks associated with the treatment may be discovered and not provided to the person and taken into account at the time of illness. The will may not make provisions for certain decisions which may be required like placement in supported accommodation, the issue of objections to treatment or placement may become problematic within this concept. To overcome some of these problems it may be that guardianship becomes a backstop - possibly enduring guardianship first and then court or tribunal appointed guardianship. Living wills would seem a less restrictive alternative to these legal mechanisms.

Who should living wills be made available to?

It would seem that living wills should be made available to any adult person who has the capacity to understand the nature and intent of the document.

What are the resource implications for the introduction of living wills in the area of mental health?

It would seem that the only resource implications would be access to a legal practitioner to witness the documents execution, if this is what is envisaged. Clearly medical professionals and other health care professionals are currently required to explain to the person the risks and benefits of proposed plans and to include the person in decision making about their treatment and care. If this is indeed what is occurring then the development of a living will would only seem to be a formalisation of the these discussions and a formal document setting out the person's consent to certain actions occurring in the event of their illness. The Office of the Public Guardian questions whether the required level of consultation and discussion does occur currently even though it is being required by government policy and the law. As such this could require quite a significant resource commitment.

Given this it may be necessary to schedule sessions in which to develop the living will when the person is well, as part of the preventative approach to their illness. If this is required it would seem that extra resources, particularly in respect of time of appropriate professionals would be necessary.

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?

Given the importance of allowing people to make whatever decisions they can about their life it would seem that the concept of living wills extends beyond the boundaries of state jurisdiction. As such it may be useful to have the matter dealt with by the Australian Law Reform Commission.

It could be argued that state health departments may be best placed to consider this issue further as the major providers of mental health services. On the contrary it could also be argued that a medical model of care for the people in question is not always appropriate and that the decisions to be made may not be best served by responsibility resting with health departments. A more independent agency may be better placed to consider the matter fully.

The major focus of living wills is the protection people's rights and enabling them to be more meaningful participants in decision making processes. It may therefore be more appropriate, if there is a reluctance to refer the matter to the ALRC, for states to develop the concept within the government department with responsibility for human rights programs. In New South Wales this would be the Attorney-General's Department.

Such a move might also be supported if one took the view that living wills should be made available to all adults.

It is noted that, historically, Guardianship legislation in Australia has been a state responsibility. Experience to date has shown that there have been problems associated with this system in regard to the recognition of orders between states. In recent years there have been efforts to gradually address this issue through the introduction of legislative amendments which allow for the recognition of interstate orders. It is suggested that this will also be an issue in the area of living wills and should be dealt with in the first instance.

Terminology

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

In Canada one jurisdiction refers to similar instruments as Ulysees agreements. No other suggestion is made on this issue.

Decision making

What kinds of decisions could be made in advance?

It would seem that any decision which a competent adult could make, and the law would allow, should be able to be made within such an instrument. In particular such an instrument should allow the person to be able to stipulate their consent to specific medical treatment, accommodation and support services which might be required when they are unable to make these decisions themselves.

What resources would be required to assist consumers to make advance decisions?

Full and frank information about their medical condition, support needs and options available to treat or support them. This information might be provided verbally within a consultation with health care professionals or social welfare professionals or in written form. The person would need to understand the capacity of the service system to provide the services they require.

An issue of concern in this area would be the consenting to medication and medical treatment ahead of time. It may be difficult for the person, and the professionals involved, to project what medications the person might be on a particular time in the future. As such the ri8sks and benefits of the introduction of a new medication, or an increase of a current one, within the context of the other medications the person may be taking may not be known. This may lead to a situation where the risks and benefits, including the interactions of medications, might not be able to be fully discussed in the development of the living will. This issue requires further consideration with appropriate health care professionals.

Substitute decision-makers

Substitute decision makers have been a reality within the field of disability for some time. All Australian States have provisions for statutory substitute decision makers. In New South Wales the Guardianship Act 1987 commenced in 1989. Prior to this the Supreme Court exercised its inherent powers to appoint guardians.

The Guardianship Act 1987 (NSW) like a number of other similar pieces of legislation in other Australian jurisdictions sets out general principles which are to be observed by anyone exercising a role detailed in the Act. Such principles in NSW therefore bind the Guardianship Tribunal, a guardian appointed pursuant to the provisions of the Act and persons responsible.

The commission is referred to Robyn Creyke's very detailed examination of these issues for the commonwealth in 1995, Who can decide: Legal decision making for others. Canberra: Department of Human Services and Health.

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

It is clear that a knowledgeable and skilled substitute decision maker can readily protect a person's interests by ensuring that a full discussion of the person's situation occurs through which an informed decision is made on their behalf. By an informed decision in this context we refer to the substitute decision maker understanding what is proposed, why it is proposed and the risks and benefits associated with the proposed course of action.

What obligations and responsibilities would substitute decision-makers have?

As previously mentioned a substitute decision maker should be guided by the currently accepted substitute decision making principles - best interests and substituted judgement. The commission is also referred to the general principles enshrined in the Guardianship Act 1987 (NSW) and similar legislation in other states, as well as Dr Creyke's report cited above.

The use of living wills may make it more feasible and indeed easier for substituted judgement to become the primary principle used in these circumstances given the person's clearly expressed wishes at least about some of their care and treatment options. However, the best interests principle will need to be the basic test in case their are circumstances which render the living will impossible to implement or the living will does not cover the decision which is required.

It is essential however that the substitute decision maker is concerned only with the welfare and interests of the person the represent, seeks their views and uses their best endeavours to explain the current situation to the person.

Would it be desirable to have different substitute decision-makers for different matters?

The Office of the Public Guardian can see no particular problem with the same person being able to provide a range of decisions on behalf of a person. It is common for the Public Guardian to be appointed with a guardianship order containing the functions (authorities) of Accommodation, health Care, Medical and Dental Consent and Services. This allows for a holistic approach to decision making taking into account a number of areas someone might need a decision to provided in.

How might the potential be avoided for a substitute decision-maker to deny access to appropriate care or approve access to inappropriate care?

Unless the law changes substitute decision makers are required to make decisions based on the best interests principle. It is agreed that this principle is open to wide interpretation and the individual perceptions of the substitute decision maker. As Mason, CJ stated

the best interests approach offers no hierarchy of values which might guide the exercise of a discretionary power...much less any general legal principle which might direct the difficult decision to be made" , further he noted that the "best interest approach depends on the value system of the decision maker" and creates " an unexaminable discretion in the repository of power (175 CLR 218, 271 cited in Creyke 1995: p. 42).

Participation and consultation

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

It is accepted practice that people must be involved in decisions which impact on their life. Disability Services legislation in fact has mandated this in New South Wales. The law in relation to consent has required that decisions are made by the person in respect of treatment they receive.

In regard to the benefits accruing for the person themself participation in decision making will usually lead to more commitment from the person to follow through with any decision they have been involved with, respect for the person as an individual and assist in ensuring a considered approach is taken when making decisions.

The impact of a mental health problem on the person's ability to follow through with a decision made at an earlier time, however, might be questionable. This should not, however, be used as an argument against the usefulness of living wills.

Participation

Could living wills facilitate greater participation and consultation in care?

If recognised by statute living wills may ensure that the person is involved in planning more meaningfully. should indeed be expected as part of good practice medicine and health care for such participation and consultation. However, the requirement for individual planning and consultation under the Disability Services Act has not necessarily ensured more meaningful participation by the person with a disability. The mere presence of a statute does not necessarily alter the behaviour of professionals.

How might living wills ensure that interaction between consumers and providers is beneficial?

There is no way in which such interactions can be ensured. Living wills are a legal instrument to allow for certain actions to be taken which have been decided in advance. Interaction in developing such documents relies on the people's level of experience, communication style, values and philosophy.

The use of penalties or judgements against health care providers about these issues may indeed increase compliance, but should not be considered the primary ways of developing good practice.

How might living wills ensure that adequate information exchange occurs?

Living wills can not ensure that adequate information is exchanged. They can be part of a structured process which can focus people's minds on a particular set of issues with the living will as an outcome. The extent, nature and depth of the information exchanged can not be guaranteed by anything other than the people involved, and any common law or statutory requirements governing the information required to be provided prior to consent being given (see section Guardianship Act 1987 (NSW)).

Individual treatment plans

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

A treatment plan would not necessarily be essential to the effectiveness of a living will, however it would make for much more useful and clinically appropriate decision making. Often medication levels need to be titrated to achieve the right dosage, agreement to a one off dosage level may hamper rather than free up the system. Similarly it is important for everyone involved to understand that the living will might be able to deal with more that the medical issues, and as such a more comprehensive plan would seem more beneficial.

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?

Treatment plans seem currently to be an option for treating practitioners. It is unlikely that mandatorily requiring them would necessarily produce plans which would be useful or beneficial to the person. They are however a way of placing the holistic needs of a person on paper and for the ways for such needs to be considered together and not as discrete areas episodes or interventions.

The Office of the Public Guardian encourages medical practitioners to consider the use of treatment pans where possible and is currently developing a policy in this area.

Education of relevant professionals, people with disabilities, appropriate judicial officers and substitute decisions makers as to the benefits of treatment plans may assist in the more ready uptake of such an initiative.

Could living wills enable better before and after care strategies for consumers?

It is possible that living wills would have a beneficial impact on before and after care strategies by ensuring a more seamless approach to service provisions and decision making. It would be reasonable to suggest that the situation would be "better" simply because the person with the mental health problem would be making the decisions required across all three components.

Could living wills enable better discharge planning and ensure the benefits of discharge planning?

As previously mentioned living wills would not be able to ensure benefits of discharge planning. They may however provide a forum within which such issues can be more thoughtfully considered and planned ahead of time, whilst the person themself is able participate in discussions and to make decisions. Discharge planning however must be done within the context of the presentation of the person with the mental health problem at a particular point in time i.e. their discharge from hospital.

Could living wills ensure that different needs such as maintaining employment or housing are accounted for?

Living wills could feasibly consider the issues of employment and housing just as any good case management plan might already.

Advocacy

How might advocacy services benefit from the availability of a living will?

Advocacy services would benefit from the availability of a living will by knowing the wishes of the person which have been expressed when they have been competent to make decisions. It is sometimes difficult for advocates to advocate for the person when the person's views have not been or can not be clearly communicated. The living will can give clear guidance to the advocate in the direction the person wishes their care to proceed, given the information available at the time of the making of the living will. The Office of the Public Guardian believes this would provide for a surer foundation for the efforts of the Advocate than a situation where the person's views are not as clear and the Advocate relies more on general principles, philosophies and what they believe is in the person's best interests.

Could a living will enable a consumer to advocate on his or her own behalf?

It would be feasible for the consumer to use the living will to advocate on their own behalf. The living will would very clearly provide a statement to all involved that when this person was competent to make decisions they decided a certain course of action was appropriate. It would be harder for professionals and other involved to argue against any decision which had been made under a living will given this reality.

Administration

What might a living will look like?

The Office of the Public Guardian offers no view on this question.

What circumstances would invoke or revoke a living will?

Circumstances similar to those detailed in the Guardianship Act 1987 (NSW) particularly in respect of enduring guardians might be applicable here.

What kind of process would need to take effect once a living will was invoked?

It would be important for the treating professionals to be aware of the existence of the living will. It would therefore be important that if there has been a history of recurrent hospitalisations that a copy of the living will is appended to the person's hospital file and attention drawn to its provisions.

What safeguards would be required to ensure that living wills were available and validated?

It is possible that the same provisions for the execution of this document should be used as those for the appointment of an enduring guardian or power of attorney, i.e. being witnessed by a Solicitor, Barrister or Clerk of the Local Court.

Similar provisions in relation to the invocation of a an instrument appointing an enduring guardian may be useful to consider if there is a lack of clarity as to whether the requirements for the living will to become operational are present.

What kind of process could ensure that living wills were treated as a process rather than an event?

Good case management by relevant professionals and a commitment by all health care and social welfare professionals to the concept of living wills would ensure it is seen as a process. The experience in other disabilities in respect if individual planning would suggest that it is often difficult maintain a focus on the process of consultation and empowerment of the person rather than having a piece of paper at the end.

Is the determination of capacity as outlined in the Model Mental Health Legislation adequate? Is not, how should capacity be determined?

The Office of the Public Guardian offers no comment in this area.

Resources

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

The commitment of relevant health care and social welfare professionals will be essential to the success of any initiative in this area. A commitment of their time and energy in meaningfully consulting with and supporting the person in the decision making process. It will also require access to a legal practitioner if the same

Legislative and service considerations

Would living wills have the same benefits across all jurisdictions?

Given the concept and philosophy behind living wills it would be hard to envisage a situation in which living will which were successful in one jurisdiction would not be successful in another.

Should provisions be made to take account of local and regional differences?

Living wills, like any service provision decisions or substitute decision making process, are constrained by the availability of resources. The concept of living wills should not however be limited by these realities. The development of a living will must take the available resources into account when possibilities are discussed.

What legislative frameworks could accommodate living wills?

It would make sense for any legislative provisions for living wills to be placed within guardianship and substitute decision making legislation given the subject of that area of the law.

Other interests and obligations

What obligations would living wills place on health professionals, courts and tribunals?

Living wills would make a clear statement of the person's wishes and decisions in the event of certain circumstances occurring. As such it would seem that any third party should be obliged to respect these decisions unless they breach the law, have been made under duress, the person was competent at the time the living will was executed or the circumstances for which the decisions were made have changed.

How would living wills affect the decisions of professionals and decision-making bodies?

Substitute decision makers should be obliged to follow the decisions as stated in the living will unless since the date the living will was made advances in treatment or care options are such that the decision that was made by the person at the time of executing the living might now be different . In this situation it may be wise to allow for the Guardianship Tribunal to appoint a guardian to decide what treatment or care options are the most appropriate for the person.

What are the benefits and limitations of living wills being legally binding?

Legally binding living wills would ensure that the decisions of the person are respected and implemented. They uphold the individual's human right to make decisions for themself without unnecessary interference from another. They also provide others with a clear statement of intent and decisions which the person themself made whilst competent. Such decisions will provide for the provision of services with the safeguards associated with a legal consent.

The binding nature of living wills should not mean that they can not be broken using an appropriate legal process. Whilst living wills are important and should be respected there must be provisions to allow for them to be set aside and other legal mechanisms put in place to protect the person's rights, e.g. the appointment of a guardian.

Workability

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

It will be necessary to thoroughly educate the general public (including people with mental health problems) , health care, social welfare professionals and legal practitioners about the concept of living wills.

There is still an obvious need for health care and social welfare professionals to become more skilled and sophisticated in consultation with clients and assisting them to make decisions. Commitment needs to be engendered in these professionals to the concept of living wills to assist in their uptake as a useful clinical and legal tool.

The use of treatment plans would also seem an important barrier which needs to be addressed in order to ensure that a thoughtful consideration of all areas of the person's life and needs are addressed within the context of the living will.

************