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RESPONSE TO THE DISCUSSION PAPER: LIVING WILLS: OPASA

OFFICE OF THE PUBLIC ADVOCATE (OPA)

SOUTH AUSTRALIA

RESPONSE TO THE DISCUSSION PAPER: LIVING WILLS

Human Rights and Equal Opportunity Commission

November 1998

A South Australian perspective

In South Australia, the general terms 'advance directive', or 'living will', usually refer to any written statement that expresses a person's wishes and/or directions whilst of sound mind (ie not mentally incapacitated*), in advance of any possible loss of decision making ability that may occur in the future. Of the advance directives made by South Australians, only the following are legally recognised and binding.

  • A Will - which only applies once the person who makes it, dies.

  • Enduring Power Of Attorney (Powers of Attorney and Agency Act 1984),

  • Enduring Power of Guardianship (Guardianship and Administration Act 1993),

  • Medical Power of Attorney, and
  • Anticipatory Directions (Consent to Medical Treatment and Palliative Care Act 1995).

These formal documents apply whilst the person who made them is still alive, but is unable to make necessary personal, health and/or financial decisions because of reduced capacity; hence the term 'living will'. Three different laws, each with different instrumental requirements can make choosing between these different options somewhat confusing for the average community member, (eg it is not necessary to have both an Enduring Power of Guardianship and a Medical Power of Attorney). In OPA's experience, most interest in advance directives is generated by those people considering aged care decisions for the future. The OPA actively promotes the use of advance directives as a preferred alternative to possible Guardianship Board involvement in the lives of families in the future.

What is an Enduring Power of Attorney (EPA)?

This document allows a person to appoint someone they know and trust to make important decisions about financial, property and related legal matters. This authority can be activated straight away or only if and when the person who makes it loses mental competence. An EPA cannot give decision making authority to someone else regarding personal and health areas of life.

What is an Enduring Power of Guardianship (EPG)?

This document allows a person to appoint someone they know and trust to make important personal decisions such as choice of accommodation, relationships with others, holidays and all medical treatment decisions, should mental competence be lost in the future.

What is a Medical Power of Attorney (MPA) and an Anticipatory Direction (AD)?

A Medical Power of Attorney appoints a Medical Agent (not a professional carer) to make medical treatment decisions for a person should he or she become unable to make these decisions for themselves. An Anticipatory Direction does not require the appointment of a 'proxy' or substitute person, however it is a document that records a person's wishes and directions about end of life decisions which must be acted upon by those providing care.

For an advance directive to be legally valid, the person making it must be 18 years or over and be mentally competent to understand the nature and intention of the document. he or she must also understand the consequences of completing and signing the document, and must do so without any coercion, pressure, or influence by others.

* Mental Incapacity is defined in the Guardianship and Administration Act 1993 as -

"the inability of a person to look after his or her own health, safety or welfare or to manage his or her own affairs, as a result of-

(a) any damage to, or illness, disorder, imperfect or delayed development, impairment or deterioration, of the brain or mind; or

(b) any physical illness or condition that renders the person unable to communicate his or her intentions

or wishes in any manner whatsoever."

(NB: Because mental illness can result in a mental incapacity as defined above, the provisions of the Guardianship and Administration Act (GAA) may apply; the provisions of the Mental Health Act (MHA) apply where a person requires compulsory detainment and or treatment because of mental illness.)

Important considerations

  • An advance directive can be revoked at any time whilst a person remains mentally competent.

  • A person is presumed competent unless proven otherwise; mental incapacity should be assessed in a task /function specific way, not assumed to be global and total.

  • Personal autonomy demands respect for an individual's determination of his or her own interests.

  • Comprehension of a person's understanding when making an advance directive (ie the signing and the giving/stating directions) should be verified by asking the person to give explanations in his or her own words.

  • It is important wherever possible, that a person making advance directives is able to express her or his views and give directions unencumbered by the presence of any other interested persons (family etc) in the room.

  • Where a person's competence to make an advance directive remains questionable, further professional assessment of mental capacity at the time of making advance directives is required.

 

Who can consent to medical and dental treatment if the person concerned loses mental capacity?

If a person has not appointed a Medical Agent, nor made an Anticipatory Direction (under the Consent to Medical Treatment and Palliative Care Act - CMTPCA), and mental capacity is lost, (this can include the onset of mental illness) then the provisions of the GAA apply. Under Section 59 of this Act, consent to medical or dental treatment for a person with a mental incapacity must be sought from:

  • an Enduring Guardian, where available

  • a Guardian, if appointed by the Guardianship Board under a Guardianship Order. (The written order will specify the areas in which the guardian is empowered to make decisions).

- where there is no guardian or enduring guardian, then the following specified relatives can give consent:

  • a spouse, including legal defacto spouse;

  • a parent;

  • a sister or brother of or over 18 years;

  • a daughter or son of or over 18 years;

  • a person (not being a guardian) who acts in loco parentis. This means a person who provides the day to day care and supervision of the person, and can include a live-in carer or the director of a nursing home or hostel.

- as a last resort, the Guardianship Board, on application, can provide consent to medical or dental treatment. This will involve a hearing before the Board.

The 'specified relatives' as listed above, automatically have the authority to provide substitute consent for a person who, because of reduced mental capacity, cannot give consent himself or herself. There is no need to contact the Guardianship Board.

Currently, there are three prescribed treatments which must have the consent of the Guardianship Board to proceed. They are;

  • sterilisation (the Family Court also has jurisdiction)

  • termination of pregnancy, and

  • electroconvulsive therapy (under the MHA)

There are also special provisions under the CMTPCA (sect 13) which deal with consent and emergency medical treatment.

Issues regarding the person who has a mental illness

  • Many service providers in the mental health sector appear to be unfamiliar with the GAA, despite their available access to education opportunities and resources provided by the OPA and other agencies. Some service providers are not well acquainted with the issues surrounding competence and decision making, and the notion of substitute consent provision for health treatment.

  • Section 59 of the GAA, can only apply where the person is not detained or under any treatment orders made under the MHA.

  • Until recent times, mental health services were provided behind walls away from general community scrutiny. Whilst changes have occurred in the options for accommodation for people with mental illness, ie deinstitutionalisation, many people who continue to receive mental health services believe the controlling and manipulative manner in which many services were delivered within the institutional setting have been transferred with the move into community based care. They feel that the punitive overtones (eg "If you don't turn up for your medication we'll take you to the Guardianship Board") and considerable power imbalance between health provider and client/family remains within the culture of some mental health services. The MHA itself provides final decision making authority regarding treatment solely to doctors and psychiatrists, allowing compulsory mental health treatment to be administered against patient and family's expressed wishes where the necessary legislative criteria is met. Under the current MHA, legal advance health care directives would probably have little impact because the doctors and psychiatrists who practice within the parameters of this medically dominated legislation, have no cause or legal obligation to consider them.

  • Under the MHA, section 18 (1) and (2), a detained patient may be given treatment for his or her mental illness, or any other illness, notwithstanding the absence or refusal of consent to the treatment. Therefore, even if an advance directive concerning health care was in place, a treating medical officer would not be bound to comply with the directions stated/ or given by proxy.

  • A person's ability to consent to proposed treatment, at times, appears to be based on service provider convenience, for example, a significantly depressed person who is ill enough to be detained, is assessed as able to give her own informed consent to ECT (a prescribed treatment under the MHA), thereby negating the need for Guardianship Board involvement. On the other hand, for some people with mental illness in the community, their unwillingness to consent to certain treatment is seen as evidence of incapacity to decide and threats of Board orders are made to ensure their compliance.

  • A common complaint from family members regarding EPA's made by a person who has cyclic mental illness, is that often the person revokes the authority as they are becoming unwell and beginning to lose insight, but no assessment of mental capacity at the time is done because the person refuses to see his or her doctor. Therefore, the person holding the EPA is left in a difficult situation. This could also be a problem with a legal health care advance directive.

  • Often a person who is mentally unwell, loses insight regarding his or her care needs. This can result in non-compliance and refusal of treatment. A person acting under the authority of a legal advance directive cannot authorise compulsion against the expressed wishes of the person who appointed him or her.

  • There are also some practical issues such as locating the advance directives or certified copies, as many of these documents are not formally registered.

 

The OPA's recommendation

We recommend the use of an Ulysses type agreement (appendix 1) as part of the overall care and management of the person concerned. The OPA believes that an appropriate name for such a care, treatment and management agreement would be; Mental Health Care and Management Plan.

Advantages of a more informal advance directive/agreement rather than an advance directive based in legislation:

  • It is an 'active' document. The service providers involved are clear regarding their role and because of their involvement in the development of the plan are more likely to take an interest in its application and ongoing evaluation. The patient is equally involved whilst well, and his or her family members are also consulted and in many cases are part of the plan's strategies.

  • Often situations become complicated because a patient's management plan is stored in the head of his or her case manager or doctor. Having management plans documented in a consistent format should provide better continuity regardless of who is providing care.

  • The agreement goes with the patient, ie ideally it moves from one regional team to another, and/or from one GP to another. Often advance directives cannot be located when needed. The responsibility for maintaining a register of living wills for mental health clients would have significant resource issues for the SA Guardianship Board or the OPA. With current resources, it would not be feasible for either organisation. In addition, many people who have a mental illness may never utilise the services of the Board or OPA, and may resent any requirement to register their advance directive because of the risk of further stigmatisation of their condition due to the involvement of such services.

  • The use of informal means, such as the Ulysses agreement, brings mental health management much more in line with other illnesses or conditions. For example, Asthma Management Plans and Diabetes Management Plans are given significant credibility in the community (eg by schools and by general practitioners who use them regularly). Having a mental health management plan is a way of 'normalising' mental illness and would assist in destigmatising the community's perception of mental illness.

  • It is not a legal document which can be revoked at a time when there is uncertainty regarding a person's competence to do so.

  • It is an informal arrangement which can have a degree of flexibility which is more difficult to do with a legally binding advance directive.

  • It is very descriptive and tailored to the individual.

  • There would probably be an interested pharmaceutical company who would be willing to provide an attractive format for the mental health management plan and assist in the promotion of its use to medical officers etc (as happens for asthma management, a lot of money is spent on drugs for mental health!!).

  • It recognises that the person may well disagree with treatment in certain circumstances but gives his or her permission to continue anyway. A person who is appointed under an advance directive would not be able to consent to treatment if the person for whom they are appointed is able to express their refusal.

  • It speaks for the person when he or she is unable to. This is in common with advance directives.

  • It requires effective communication between the treating team and ongoing evaluation of the plans effectiveness and consideration of any changes in circumstances that need to be factored in. This would require diligence on the part of the case manager.

  • It is record of agreement between the treating team, the patient and family which all parties have access to.

Work undertaken by the Education Unit of the OPA has established, informally, significant interest in the Ulysses type management plan from service providers in the mental health field. It would be appropriate, if resources became available, for the OPA to progress this interest further by developing a standard format for mental health care and management plans. The key to success would be in the promotion of the plan and in gaining the endorsement of key organisations (eg Medical Defence Association, Royal Australian College of GP's, the Guardianship Board, a pharmaceutical company etc). The impediment to success would be doctors and psychiatrists along with other health professionals, not seeing value or benefit in the plan, only more time and work! An effective marketing plan would be essential.

OPA resources on advance directives

  • Enduring guardianship and other future plans - a tri-fold community pamphlet which introduces the options for making legal advance directives in SA.

  • Guidelines to assist in determining a person's competence to make advance directives - a double sided A4 card developed by OPA (with assistance from the Royal Australian College of General Practitioners, the Legal Services Commission of SA, the University of Adelaide (Dept of Psychiatry and Health Science Div), Flinders University (School of Medicine and the Dept of Medical Ethics), the Australian Society for Geriatric Medicine (SA Div), and the Law Society of SA), to raise awareness of the fundamental issue of establishing mental competence before advance directives are made.

  • Enduring Power of Guardianship - a 'Do It Yourself" kit - a 25 page booklet which provides answers to common questions about this advance directive for personal and health matters. The kit contains three forms and a purse/wallet card for recording the contact details of the nominated guardian(s). The kits are $10. There is also a similar kit available form other agencies for EPA.

  • The OPA also contributes to and maintains a stock of pamphlets from other agencies. The range includes information on EPA, MPA and AD.

 

Prepared by Lisa Huber, OPA, 1999,

 

HREOCSUB.DOC

An Example, of an Ulysses Agreement

CARE, TREATMENT & PERSONAL, MANAGEMENT AGREEMENT

This is an agreement between David (Dave) Edward Beamish, of 555 Main Street, and the following people:

Dr Tang, my psychiatrist, 555-8626

Judith Langley, my mental health nurse, 555-8626

Tekkie Smith, 555-3069

Nancy Osprey 555-5287

Carol Smith 555-8078

Barbara Lynn, 555-1639

Dr. Steve Hall, 555-1843

Sam Tom my probation officer, (see CARE), 555-8834

Kelly Williams 555-3273

John Russ, 555-7626

These people are trusted friends or people who have experience with me and my illness. They have agreed to be members of my support team and to follow, the guidelines set out below. The Vancouver and New Westminster police have been informed of my wishes as set out below.

PURPOSE:

The purpose of this Ulysses Agreement is to provide a clear set of guidelines for actions to be taken by members of my support team in the event that I exhibit signs or symptoms of mania or serious depression.

MY SYMPTOMS OF MANIA: The following are my symptoms of mania:

1. decreased sleeping with increased activity

2. excessive energy

3. grandiosity, inflated self-esteem, thinking I am better or more powerful than others

4. increased interest in activities, overspending, incurring heavy debts

5. extreme irritability, very demanding and angry when others do not jump to my commands

6. unpredictable emotional changes

7. talking more and faster than usual, shouting people down

8. thinking processes speeded up, jumping from one topic to another, racing thoughts, flight of ideas

9. denying, that I have manic depression, refusing treatment, denying that I need lithium

Any four of the symptoms require action, as outlined below, to be taken.

 

 

 

APPENDIX ONE

PLAN OF ACTION FOR MANIA AND DIRECTIONS FOR POLICE INVOLVEMENT: For symptoms of mania the following action should be taken by members of my support team:

    • As many members of the team as possible shall consult each other and contact Nancy , as she has experience with my mania. If Nancy is not available, Steve should be contacted.

    • Nancy will alert Dr. Tang re what action is going to be taken as set out in this Ulysses Agreement.

    • Nancy will contact the Director of the Mental Health Centre.

    • The Director of the Mental Health Centre will contact the police and request that they pick me up for 72 hour observation in hospital, preferably the Royal Columbian Hospital.

    • If possible, any one of my support team or a worker from the mental health centre should go with the police to pick me up as I have experienced difficulty with the police in the past.

MY SYMPTOMS OF DEPRESSION: The following are my symptoms of depression:

1. feeling of uselessness, hopelessness, excessive guilt

2. slowed thinking, forgetfulness, difficulty in concentrating and in making decisions

3. not responding, to the phone or to messages

4. too tired and weak to do anything

5. increase in appetite and weight

6. decreased sex drive

7. suicidal thoughts

Several of the symptoms require action, as outlined below, to be taken.

PLAN OF ACTION FOR DEPRESSION:

    • For symptoms of depression the following action should be taken by members of my support team:

    • As many members of the team will consult each other and contact Nancy.

    • If Nancy is not available, Steve should be contacted.

    • Nancy will alert Dr Tang that action should be taken as set out in this Ulysses Agreement.

    • Dr Tang will instruct a mental health nurse to go to my apartment at 555 Main Street to assess the situation. If there is a need for treatment I trust my psychiatrist to decide whether to treat me at home or in hospital. I usually do not need to be hospitalised when I am depressed.

I do not need the police involved if I am depressed.

CARE:

I will see my psychiatrist two times per week during any medication changes and have my lithium level checked weekly. Once the medication is stabilised I will see my psychiatrist one time per week and get my lithium level checked once a month.

The results of the blood test should be given to Dr Tang, me and my probation officer, Sam Tom. The purpose of Sam Tom receiving the results of the lithium level is to ensure that the lithium levels are maintained, not to monitor the results of the lithium levels.

MEDICAL RECORDS:

I authorise the release of the following information to my support team or people responsible for my care: The attached medical history and medical information during which this agreement is activated.

TREATMENT WHILE IN HOSPITAL:

I am allergic to chlorpromazine so while in hospital I SHOULD NOT BE GIVEN CHLORPROMAZINE under any circumstances. My normal course of treatment for mania is to take Haldol and to be re-established on Lithium. I am sensitive to Haldol.

Otherwise, I hereby authorise Dr Tang to provide the treatment that he believes to be in my best interests even though I may at that time withhold my consent to such treatment or state that I do not want to be treated.

FAMILY, HOME AND DISSEMINATION OF INFORMATION:

My mother and step-father should be informed if I become hospitalised or leave town: Audrey and Frank Patrick, 555-4327.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This information concerning the Ulysses agreement is from an unknown source.