Re: Living Wills Discussion Paper: NSWGT
Disability Rights Policy Unit
Human Rights and Equal Opportunity Commission
GPO Box 5218
SYDNEY NSW 2001
Attn: David Mason
Dear Mr Mason,
Re: Living Wills Discussion Paper
Thank you for the opportunity to comment of the recently released discussion paper on living wills.
The Guardianship Tribunal has authority under the Guardianship Act 1987 (NSW) to appoint substitute decision-makers for adults with disabilities who are unable to make their own decisions. The Tribunal also has functions as a substitute decision-maker for medical and dental treatment proposed for adults unable to give a valid consent to their own treatment.
- The broader context: Living Wills and Advance Directives
While the present discussion paper deals with the issue of Living Wills in the context of mental illness, the experience of the Tribunal is that the capacity to appoint one's own substitute decision-maker is a facility that many sectors of the community are eager to embrace. In particular, many adults who are aging and facing diminishing physical and cognitive capacity, wish to plan for the management of their affairs to continue in the event they lose capacity.
There are at least two useful formats for such an Advance Directive. "Let Me Decide" is a booklet on how to make an advance health care directive, specifically aimed at older persons, but equally applicable to others who wish to make their wishes known. It is written by Dr Roger Clarnette and Dr William Molloy, Geriatricians, and is available through Dr Clarnette at PO Box 7077, Shenton Park, Western Australia 6008, Fax: 61 8 9346 8232 cost $10.00.
Research in this area has also been conducted by Dr Margaret Steinberg at the University of Queensland. Her team has produced a different version of an Advanced Health Care Directive. Dr Steinberg's research indicates that members of the general public would like to record their views about the medical and end of life decisions they would wish to be made on their behalf. (Much more so than their general practitioners had believed to be the case.)
The evidence in the field of aged care is that an increasing number of doctors are prepared to abide by an advanced directive if it is clearly stated and provided with informed consent. Experience also indicates that when people have an opportunity to discuss with family and carers what they would wish to happen in the event of a life-threatening illness or terminal condition, involved persons and professionals are likely to accept less aggressive and invasive treatment, if that has been indicated as a preference by the person. Ironically, in the field of aged care, conservative treatment in the nursing home or hostel where the person resides, results in fewer deaths than transfer to hospital and invasive/intensive care.
The Tribunal does not consider it appropriate to provide for Advance Directives or Living Wills to be strictly legally enforceable, as circumstances may well change over time, and it is very difficult for a person executing such a document to accurately predict the exact circumstances that might befall him/her. Nonetheless, a Living Will should be recognised as a legitimate means to express a view as to acceptable and unacceptable treatment, and should be required to be considered by any person or body acting as the substitute decision-maker for the person.
In the model adopted in "Let Me Decide", teams of nurse educators work with residents in supported accommodation facilities to inform them about what an Advanced Directive is, how to make one, assess whether a person is competent to make an Advanced Directive and assist them to make one, if they so wish.
The Central Sydney Division of General Practice is about to conduct a pilot study to assess if general practitioners are in a position to adequately assist patients who wish to make an Advance Health Care Directive.
A useful guide for assessing whether a person has capacity to make an Advance Directive has been developed by the Office of the Public Advocate in South Australia. A copy of this document is enclosed for your information.
- Enduring guardianship and advance directives
Recent amendments to the Guardianship Act 1987 provide for competent adults to appoint an Enduring Guardian with specified functions to make lifestyle decisions, such as where a person will live and what medical treatment and services they should receive. An Enduring Guardianship appointment is in effect only when the appointor has lost capacity. The Act provides for a medical practitioner to be able to certify that the appointor is totally or partially incapable of managing their person and the Guardianship Tribunal can declare that an Enduring Guardianship appointment has effect (see ss.6M and 6N of the Guardianship Act 1987).
The Tribunal considers it appropriate to have different instruments appointing substitute decision-makers for life-style (guardianship) issues and financial issues. The person you choose to manage your money may be very different to the person you choose to make personal decisions for you, and you would not necessarily want your bank manager to know what your directions are in relation to your health care.
The Tribunal considers that a "Living Will" or "Advance Directive" is a useful adjunct to an Enduring Guardianship appointment, as a living will can provide much more specific and detailed instructions as to the kinds of decisions a person would wish to have made on their behalf, in the event they are no longer capable of making decisions for themselves.
In exercising his or her functions, an enduring guardian is to have regard to the views of the appointor. In the area of medical and dental treatment, an advance directive may contain the views of the person about the proposed treatment. Whilst this is a developing area of law, the Tribunal takes the views that an enduring guardian is required to have regard to the views of the person contained in an advance directive, but is not bound by them.
Issues arise in the area of refusal of treatment. The provisions relating to objection to treatment contained in the Guardianship Act need to be further clarified in relation to advance directives. These provisions state at present that the consent of an enduring guardian will not have effect if the person carrying out or supervising the proposed treatment is aware, or ought reasonably to be aware, that the person objects to the carrying out of the treatment. Where the person objects the treatment may only be given with the consent of the Guardianship Tribunal. It remains to be determined whether a view expressed in an advance directive would amount to an objection to treatment if that the condition did not exist at the time of the expression of the view.
The Tribunal acknowledges that the issue of refusal of treatment may arise in the area of mental health in that there are circumstances where a person psychiatric disability may not possess insight into their illness. Such a person may be competent to execute an enduring guardianship appointment or to effectively communicate their views in the form of an advance directive, but may take the view that they do not need psychiatric treatment at present or in the future. A supervening element is the Mental Health Act which provides for involuntary admission to hospital.
The question of refusal of treatment arises where an enduring guardian wishes to act against the stated views the appointor contained in an advance directive that they did not require psychiatric treatment and to admit them to hospital as voluntary patient under section 12(2) of the Mental Health Act. The Tribunal takes the view that in these circumstances, the enduring guardian is not bound by the views of the person. However there is a safeguard in New South Wales, the Tribunal must approve the application the guardian has made or intends to make for the person to be admitted to the psychiatric hospital.
Where a person does have insight into their illness, the benefits of enduring guardianship and advance directives are many. Enduring guardianship is suited to an episodic illness in that the appointment comes into effect when the person loses capacity and is suspended when the person regains capacity. A person with insight into their illness may wish to execute an advance directive that contains their wish to receive treatment despite the fact that they may not take or express such a view when they become unwell. An agreed treatment plan may allow for an earlier and therefore less intrusive treatment in the event of an episode of mental illness. Involved persons may also be more willing to act if they know that it is with the agreement of the person as expressed when he or she was well. It would be useful for a model clause to be drafted to this effect that could be used by people who which to make such direction to their enduring guardians.
In this regard, you attention is drawn to the provisions of section 92(2)(a) of the Powers of Attorney Act 1998 (Qld) which allows the arrangements in the advance (health) directive to be carried out despite the objection of the then unwell maker of the directive. These arrangements are known as Ulysses agreements.
3. The framework which covers the actions of substitute decision-makers
The functions of an Enduring Guardian to consent to medical and dental treatment are subject to the provisions of Part 5 of the Guardianship Act. An Enduring Guardian can only give consent to treatment that will promote the health and well-being of the person and they cannot consent to "Special Medical Treatment" such as the prolonged administration of drugs of addiction for reasons other than the treatment of cancer of palliative care. Only the Guardianship Tribunal or a Tribunal appointed guardian given explicit authority to do so may consent to special medical treatment. The Tribunal or the guardian will have regard to the views of the person expressed in an advance directive but will not be bound by them.
In the field of guardianship, the Tribunal has jurisdiction to review any appointment of an Enduring Guardian if someone is concerned the Enduring Guardian is not making decisions in the best interests of the person who has a disability.
The Tribunal also has jurisdiction to hear matters where there is a dispute between service providers/health care professionals, and the person or their carers, as to what is the appropriate treatment to provide. Only the Tribunal or a Tribunal appointed guardian given explicit authority to do so by the Tribunal has the authority to consent to treatment over the objections of a person or their 'person responsible'.
Guardianship Tribunals and their equivalents are well set up to deal with issues relating to consent to treatment of persons who are unable to provide an informed consent. The guardianship legislation provides for the wishes of the person to be considered and adhered to, as far as is consistent with the best interests of the person.
There is a suggestion in the discussion paper that the Guardianship Tribunal or Mental Health Review Tribunal will maintain a register of advance directives. The Guardianship Tribunal takes the view that this would be inappropriate. Advance directives are documents which should be regularly updated. Any register of advance directives would have to be accessible 24 hours a day. There would be many policy, privacy, procedural and cost problems associated with the establishment of a register. A requirement to register an advance directive would discourage people from making advance directives resulting in the loss of input of the person most affected by decisions being made about them.
Once again, thank you for the opportunity to comment on this discussion paper. The issue of Advance Directives is one that is of great interest to many in the community, both within the outside the mental health field.
3 March 1999