30 Terrace Road, East Perth
Western Australia 6004
P.O. Box 6293, East Perth
Western Australia 6892
Telephone: (08) 9278 7300
Country Freecall: 1800 807 437
Facsimile: (08) 9278 7333
Email: opa@justice.moj.wa.gov.au
Internet: http://www.moj.wa.gov.au
Disability Rights Policy Unit
Human Rights and Equal Opportunities Commission
GPO Box 5218
SYDNEY 1042
DISCUSSION PAPER: LIVING WILLS
Please accept my response to the above discussion paper.
I look forward to receiving further information as this issue progresses.
Yours sincerely
JULIE ROBERTS
PUBLIC ADVOCATE
29 January 1999
Response to the Human Rights and Equal Opportunities Commission
Living Wills for People with Mental Illnesses
Introduction
The Public Advocate of Western Australia supports the concept of people with mental illnesses having significant and formalised input into the treatment of their illness. A pre-planning instrument such as a living will is a useful tool for people with fluctuating illnesses to contribute to their management while they are unwell.
The Western Australian Guardianship and Administration Act (1990) was proclaimed in 1992 to remedy a series of deficiencies which were experienced in the management of the personal and financial affairs of people who lacked capacity, or who wished to plan for that possible event.
The Guardianship and Administration Act (1990) balances the rights and autonomy of the individual with the ability to provide care and control should the person be deemed to be unable to make decisions for themselves
The Public Advocate is vested with the functions of investigation of applications made to the Board for the appointment of a guardian or administrator; advocacy on behalf of the person with the decision making disability at the time of the Hearing; investigation of allegations that a person is in need of a guardian or administrator, or is under an inappropriate guardianship or administration order; community education in respect to the Act and systemic advocacy. The Public Advocate can be appointed as Guardian of Last Resort when there is no family member or other interested party available or deemed suitable to be guardian.
The Guardianship and Administration Act (1990) also brought into existence the Enduring Power of Attorney. This allows the Donor to nominate one or two people to become a financial manager(s), referred to as the Donee. The Enduring Power of Attorney survives the Donor's incapacity, unlike the Power of Attorney that ceases, and can come into effect immediately upon signing or on declaration of incapacity by the Guardianship and Administration Board.
As the Commission is aware the Public Advocate canvassed public opinion on Ulyesses Agreements as part of a community consultation in respect to legislative changes to the Guardianship and Administration Act (1990). Community views on Enduring Personal Powers of Attorney and Advance Directives were also sought. Responses in respect to Ulyesses Agreements were limited, which perhaps indicated a lack of prior knowledge or discussion around the issue.
After consideration by the Guardianship and Administration Board and the Office of the Public Advocate, it was determined that prior to supporting the introduction of Uylesses Agreements further research in the area was required.
The Public Advocate is promoting the introduction Enduring Personal Powers of Attorney amongst recommended amendments to the Guardianship and Administration Act currently being considered by the Attorney General. This will allow the appointment of a Donee who would have authority to consent to personal/lifestyle and medical decisions if the Donor develops a decision making disability and is unable to make reasoned decisions.
The Enduring Personal Powers of Attorney would come into operation only when the Donor is unable to make decisions for themselves. It is proposed that the Public Advocate would not be able to be nominated as a Donee.
Legislatively it is proposed that the Enduring Personal Power of Attorney is placed within the Western Australian Guardianship and Administration Act (1990). The Guardianship and Administration Board would deal with any dispute in respect to decisions made by the Donee and would have the power to appoint a Guardian, should the Donee not be acting in the best interests of the Donor.
It is not known if having both an Enduring Personal Power of Attorney
and an Enduring Power of Attorney will be similar having the proposed living
will. If they are introduced the Public Advocate will seek to monitor the
use of Enduring Personal Powers of Attorney by people with fluctuating
mental illness and evaluate whether their needs are being met through this
tool.
General
It is the view of the Public Advocate that there is a need for a pre-planning document to address lifestyle and medical issues for all community members, and she therefore support the use of this type of tool for people with mental illness.
There is concern that a living will created solely as an advance directive would, due to its nature, be unable to be adapted to meet particular circumstances, which may not have been predicted at the time the living will was made. The inclusion of a substitute decision-maker as part of a living will, therefore, gives greater scope for this to be a useful tool.
The combination of both a statement of wishes re treatment and a substitute decision maker would allow the Donor to contribute to their treatment plan, to state their wishes and to have the protection of an advocate/decision maker. In Western Australia an Enduring Power of Attorney currently has provision for this, as will the recommended Enduring Personal Power of Attorney.
Legislatively a living will should be placed within the Guardianship and Administration Act 1990, in order that mechanisms for the appointment of substitute decision-makers can be utilised to their fullest extent. Guardianship and Administration Boards or their equivelents, which now exist in all states and territories excepting the Northern Territory, have extensive experience in determining capacity of people with decision-making disabilities, as well as considering their best interests.
Consultation and input from consumer groups is seen to be essential.
Terminology
As the term living will is generally used in medical systems as a substitute term for an advance directive, the Public Advocate supports the use of alternative terminology. As the word will is usually associated with the death of the person who has drawn it up, it is suggested that this is not an appropriate word to describe the tool.
The Commission would be aware the term used in Ontario and British Columbia, Canada is Ulysses Agreement. It is understood that they are also referred to psychiatric wills.
Public Advocate, having used the term Ulysses Agreement during her community consultation process, is not committed to using it on an ongoing basis.
It is recommended that terminology is adopted that encapsulates the
purpose of the tool and which consumer groups are comfortable.
Decision-making
Should living wills for people with psychiatric illnesses be introduced
it would be suggested that they encapsulate all sections of a persons'
life which could be effected by their psychiatric illness. This would include
medical treatment, accommodation issues and financial management. Limitations
in terms of any potential clashes with the relevant mental health and guardianship
legislation would need to be established.
Substitute Decision Makers
The inclusion of the provision to have a substitute decision makers (the Donee) as part of a living will is viewed by the Public Advocate as a helpful addition to the tool. Without this inclusion the living will would have all of the constraints faced by other forms of advanced directives, including an inability to necessarily predict the situation the consumer might find themselves a part of.
The obligations and responsibilities of a Donee would be dependent upon the role given to the Donee by the Donor, and the legislated requirements in respect to decision making. It is suggested that the Donee would be expected to act in the best interests of the Donor, rather than to act in a manner predetermined by the Donor. The Western Australian Guardianship and Administration Act 1990, s51 (see attached) outlines the issues that are to be considered by a Guardian when making decisions on behalf of a represented person. It is suggested that this is a reasonable model to guide decisions of Donee under a living will. Guardianship legislation in other juristrictions could provide other models for consideration.
Legislative provision should be made to ensure that the best interests of the Donor, when unable to make decisions, are met. If it were believed that the appointed Donee was not acting in the Donor's best interests there should be the legislative ability to revoke the appointment. The Guardianship and Administration Board, for example, has the ability to intervene by either varying or revoking an Enduring Powers of Attorney, when the Donor has lost capacity.
Similarly consideration would need to be given to the status of a living will and the role of the Donee if the consumer was admitted as an involuntary patient to a psychiatric hospital. For example, would it be the expectation that a Donee have the role of consenting to psychiatric treatment? If the Donee did not consent or was not consulted would this be the equivalent of a competent person was being treated against their will?
The Public Advocate would not object to having different Donees to make
lifestyle/medical decisions and financial decisions, should the Donor chose
to appoint Donees for these purposes. The Donees would be obliged to co-ordinate
their roles and tasks carefully. However, having different Donees for different
tasks within each of these instruments would not be supported as it could
create confusion for service providers and diminish the viability of the
instrument.
Participation and Consultation
For any person who is expected to comply with a treatment regime, consultation
and participation in the treatment plan are logically one of the easiest
ways to begin this process. The success of living wills, should they be
introduced, will be dependant upon the degree to which consumers and those
working in the area of psychiatry embrace the concept, and it would seem
to be important to ensure that both groups were part of any planning and
implementation process.
Individual Treatment Plans
Living wills could ensure better treatment for consumers both in respect to before and after care strategies and discharge planning. The devising of individual treatment plans would seem to be an important part to ensure appropriate functioning of a living will, and that the consumer's wishes in respect to their treatment are clear.
Maintenance of employment and housing through a living will would most
likely be dependent upon individual issues. Maintenance of accommodation,
for example, through payment of rent would be able to be managed under
provision for another person to access bank accounts. It would seem, without
the assistance of case examples, that maintenance of employment may not
be able to be catered for under a living will.
Advocacy
Advocacy services, both general and those such as the Office of the Public Advocate, would benefit from consumers having a living will in respect to supporting the consumer's wishes during an advocacy process.
For example, should an application for Guardianship and/or Administration be made when a consumer had a living will there would be a clear statement of the person's previous wishes that could be supported by this Office at the time of a hearing of the Guardianship and Administration Board. This would also assist the Guardianship and Administration Board, and their equivalents, in their deliberations and the appointed Guardian/Administrator in the execution of their duties.
If the proposed model of a living will was introduced it is to be assumed
that one of the roles of the appointed substitute decision-maker would
be to act as an advocate.
Administration
The invoking and revoking of a living will would be dependent upon how the instrument was structured.
If living wills were a combination of an Enduring Personal Power of Attorney and an Enduring Power of Attorney the Donor would have several options in respect to invoking both instruments.
In respect to lifestyle and medical decisions it is the strong view of the Public Advocate that a substitute decision making process could only be embarked upon when the Donor was unable to make reasoned decisions. It is not seen to be appropriate that a person had a substitute decision maker for these types of decisions when they are competent.
It is proposed that the Donor will be able to choose the method that will invoke the Enduring Personal Powers of Attorney, either through a declaration of incapacity by the Guardianship and Administration Board or the certification of incapacity by two independent medical practitioners.
The Enduring Personal Power of Attorney would be revoked upon Donor resuming capacity.
For Enduring Powers of Attorney the Donor can choose for this to be invoked at the time of signing or upon declaration of incapacity by the Guardianship and Administration Board. Enduring Powers of Attorney can be revoked upon the resumption of capacity if it was the desire of the Donor.
In respect to the determination of capacity attached is a copy of the
requirements of capacity for an Enduring Power of Attorney used in Western
Australia. Guidelines in respect to capacity to sign an Enduring Personal
Power of Attorney have yet to be established.
Resources
Resources in the area of psychiatric services are already stretched, and without additional resources to assist with the implementation and operation of living wills the systems' willingness to embrace the concept could be reduced.
The determining of resources for living wills would be reliant upon
the estimated need for this tool. It is recommended that any costings include
a community education component that would target consumers, those working
in psychiatric services and the general public.
Legislative and service considerations
In Western Australia it would be recommended that living wills would included under the Guardianship and Administration Act 1990.
It could be argued that the Mental Health Act 1996 is the most appropriate legislation, given that the target users of the legislation are mental health workers and consumers. However, the Guardianship and Administration Act 1990 has provisions for appointment of Enduring Powers of Attorney and (it is hoped in the near future) will also be accommodating Enduring Personal Powers of Attorney. The Guardianship and Administration Act 1990 with its principles of operation can offer people with decision making disabilities a significant degree of protection.
Fragmenting the appointment of substitute decision-makers between several
pieces of legislation is viewed to be unhelpful in respect to consistency
of legislation and would also be confusing for the public.
Other interests and obligations
The obligations a living will would place on health professionals, courts and tribunals would be dependant upon the legislated power of a living will, in particular that of the Donee. If the Donee's decisions had the same weight as if the Donor made them, it would be expected that a living will would place significant obligations upon all parties. It would be conceivable that the Donee could over-ride decisions made by health professionals, thus requiring protective legislation for an appeal process.
It would be recommended that the authority of a Donee when the consumer is an involuntary patient be made explicit in legislation. Currently in Western Australia under the Mental Health Act 1996 if a person is an involuntary patient a Guardian's consent is not required for psychiatric treatment to be administered. While there have not been any problems to date (due in part, no doubt, to the small number of people with psychiatric illnesses who have Guardians), potential for difficulties is present.
Despite any limitations the Public Advocate is of the view that the
appointment of Donees must be legally binding. Following on from this,
decisions made on behalf of a Donee would also be legally binding.
Workability
Resources for professionals and Donees operating living wills is seen to be an essential component to the success of this instrument. Additionally, resources must be available to ensure that community education can be conducted.
Literature from Canada suggests the need for consumers using Ulysses Agreements to have strong support networks to ensure their viability, and those networks will need to be supported.
If there was sufficient levels of support for living wills from consumers
and workers employed by Psychiatric Services it is expected that living
wills would be workable.
Conclusion
The Western Australian Public Advocate supports the introduction of an instrument which will allow people with fluctuating mental illnesses to contribute to their psychiatric treatment, and will follow the discussions in this area with interest.
As outlined in the introduction to this response it is currently the intent of the Public Advocate to promote the introduction of Enduring Personal Powers of Attorney, which will allow for the appointment of a substitute decision maker when the Donor is incapacitated. It is hoped that the introduction of the Enduring Personal Power of Attorney when used in conjunction with an Enduring Power of Attorney will provide a similar level of support to the proposed living will.
Monitoring of the introduction of the Enduring Personal Power of Attorney
will take place in order to ascertain whether it is meeting the needs of
those using it. Modification of the Enduring Personal Power of Attorney
or the introduction of additional instruments such as the Uylesses Agreement
would be carefully considered if the Enduring Personal Power of Attorney
is not meeting the needs of people with fluctuating mental illnesses.
Prepared by: Deborah Brill, A/Senior Policy Officer
Endorsed: Julie Roberts, Public Advocate
Glossary of Terms
Administrator: A person appointed by the Guardianship and Administration Board to make financial and legal decisions for a represented person.
Advance Directive: A direction given in advance of incapacity and indicating the type of medical treatment a person would like to have or not to have in the event that they are no longer competent to decide
Donee: A person who is nominated to become a financial or legal manager via an Enduring Power of Attorney, or to be a substitute decision maker for lifestyle and medical issues under an Enduring Personal Power of Attorney.
Donor: A person who nominates another to become Donee under an Enduring Power of Attorney or an Enduring Personal Power of Attorney
Enduring Personal Power of Attorney: A mechanism by which a competent person can nominate a substitute decision maker to make lifestyle and medical decisions should they lose capacity and become unable to make reasoned decisions. Enduring Personal Powers of Attorney do not yet exist in Western Australia.
Enduring Power of Attorney: A mechanism by which a competent person can appoint another to manage their financial or legal affairs. An Enduring Power of Attorney survives the incapacity of the person donating it, unlike an Ordinary Power of Attorney that ceases.
Guardian: A person appointed by the Guardianship and Administration Board to make lifestyle decisions in the best interests of a person who has been deemed to be unable to make reasoned decisions.
Guardianship and Administration Board of Western Australia: An independent statutory tribunal created under the Guardianship and Administration Act 1990
Office of the Public Advocate: Provides advocacy, investigation and representation services on behalf of people for whom appointment of a guardian or administrator may be considered necessary to safeguard their best interests. The Public Advocate may be appointed as Guardian of Last Resort when there is no-one else suitable or available to be appointed Guardian.
Proposed Represented Person: A person for whom an application has been made to the Guardianship and Administration Board of Western Australia.
Uylesses Agreements: A specific power of attorney for people
with bi-polar affective disorder and other disorders which can render a
person incapable of making reasoned judgements for periods of time. A Uylesses
Agreement identifies when, and under what conditions, it would come into
effect; who is to have responsibility for substitute decision making and
for what decisions; what cross-consultation is to occur; the circumstances
when revocation may take place.
Guardian to act in best interests of represented person
51.(1)Subject to any direction of the Board, a guardian shall act according to his opinion of the best interests of the represented person.
(2)Without limiting the generality of subsection (1), a guardian acts in the best interests of a represented person if he acts as far as possible¾
(b) in such a way as to encourage the represented person to live in the general community and participate as much as possible in the life of the community;
(c) in such a way as to encourage and assist the represented person to become capable of caring for himself and of making reasonable judgments in respect of matters relating to his person;
(d) in such a way as to protect the represented person from neglect, abuse or exploitation;
(e) in consultation with the represented person, taking into account, as far as possible, the wishes of that person as expressed, in whatever manner, or as gathered from the person's previous actions;
(f) in the manner that is least restrictive of the rights, while consistent with the proper protection, of the represented person;
(g) in such a way as to maintain any supportive relationships the represented person has; and
(h)
in such a way as to maintain the represented person's familiar cultural,
linguistic and religious environment.
NOTES FOR GUIDANCE OF PERSONS
CONCERNED IN THE EXECUTION
OF ENDURING POWERS OF ATTORNEY
To be capable of signing an enduring power of attorney, a person must understand the nature and effect of the document. In understanding the nature and effect of the document the person must:
- Know the nature and extent of his/her estate
- Know that the enduring power of attorney will give the attorney complete authority to deal with the estate (provided that such dealings are consistent with the interests of the donor of the power).
- Know that whilst competent she/he may direct the attorney to act in a particular way and may revoke the power at will.
- Know that:
- if clause 4(a) has effect, the power will continue to operate without any form of registration or official authorisation whether or not he/she has legal capacity
- if clause 4(b) has effect, the power will only operate when a declaration by the Guardianship and Administration Board is made that he/she does not have legal capacity.