7. End of life decisions
Learning objectives
• distinguishing between withdrawal of treatment from competent and incompetent adults
• explaining the significance of the common law in end of life decisions
• identifying the statutory requirements and mechanisms which allow patients to make advance directives in Australian jurisdictions
• describing the requirements of a medical power of attorney
• discussing the role of guardianship in relation to patient decisions for treatment
• explaining the legal significance of a not for resuscitation order.
Introduction
There is often confusion associated with end of life decisions and withdrawal of medical treatment. The source of this confusion commonly relates to the context, where a patient refuses treatment, or is incompetent to make a decision, and the medical practitioner has limited knowledge of the existing legal framework. This area relies on the common law and two key areas of legislation: guardianship acts, and specific legislative frameworks which deal with advance directives and the appointment of substitute decision-makers. The importance of medical practitioners’ understanding of the relevant legal principles cannot be overstressed as their criminal and civil liability is protected if they act in good faith and comply with the specific laws in their respective state or territory.
The Common Law
Competent adults
The common law of consent recognises that a competent adult patient has the right to consent to, accept, or refuse medical treatment including treatment that may be life-saving. In Brightwater Care Group v Rossiter (2009) 1 a competent male quadriplegic, with no ability to move, requested that his medical and health carers discontinue the provision of nutrition and hydration via his gastrostomy tube. The court held that provided Mr Rossiter was first given an explanation by a medical practitioner, including the consequences of ceasing such care, he could refuse the nutrition and hydration. Furthermore, the Brightwater healthcare facility would not be criminally responsible for any consequences to Mr Rossiter’s life or health.
Incompetent adults
The leading case which has influenced Australian courts relating to withdrawal of treatment from incompetent patients is the English case of Airedale NHS Trust v Bland [1993]. 2 Anthony Bland was a 17-year-old who suffered severe brain damage after being crushed in a football crowd accident. His cerebral cortex was destroyed, he was unable to see, hear or feel and, having no cognitive function, he was described as being in a persistent vegetative state. There was sufficient brain stem function which enabled him to breath without assistance, receiving artificial feeding via a nasogastric tube. The Airedale NHS Trust made an application to the court for a declaration to allow the nasogastric feeds and other treatment to be lawfully discontinued. The court accepted the principle that the sanctity of life is not absolute and when a respectable body of medical opinion believes that the patient has no hope of recovery and that treatment is futile and of no benefit to the patient, then such treatment could be withheld. It was considered that when treatment is futile the treatment is not in the ‘best interests’ of the patient. The principles established in this case have provided persuasive guidance and have been incorporated into the Australian courts’ decisions.
Futility and disagreement by family members
Where the decision to withdraw treatment from an incompetent patient is made by practitioners on the grounds that treatment is futile and not in the best interests of the patient, family members do not always agree. There are Australian cases where such decisions have been tested. For example, in 2004 75-year-old Mr Messiha was admitted to hospital with severe brain hypoxia following a cardiac arrest. He had a history of severe lung disease and cardiac problems. Two days after his admission the hospital staff raised the possibility of withdrawing mechanical ventilation on the basis that there had been no improvement in his condition and there was no realistic prospect of recovery. Mr Messiha’s family members disagreed and sought an order from the New South Wales Supreme Court to prevent the hospital staff from withdrawing treatment. The court declined to order continuance of the treatment and Mr Justice Howie commented that:
It seems to me that it would be an unusual case where the Court would act against what is unanimously held by medical experts as an appropriate treatment regime for the patient … This is not to make any value judgment of the life of the patient in his present situation or to disregard the wishes of the family and beliefs they genuinely hold for his recovery. … But it is principally a matter for the expertise of professional medical practitioners …3
In Herrington’s case4 in 2007, an application was made to the Victorian Supreme Court by John Herrington seeking orders that medical treatment be given to his partner, Rosalie King. Ms King had been in a persistent vegetative state (PVS) for 4 months and was being hydrated and fed via a percutaneous endoscopic gastrostomy tube (PEG). The medical staff wished to cease feeding due to the danger of her vomiting and aspirating. The medical staff met with Mr Herrington and Ms King’s family to discuss the change in treatment plan. Ms King’s parents and partner, Mr Herrington, provided evidence in relation to Aboriginal culture which believes a sick person should be cared for and not left to die, and Ms King’s beliefs that, if she could express an opinion, she would not agree with the ceasing of the PEG feeding. In addition, Mr Harrington believed that he had spent more time with Ms King than the medical staff and he firmly held to the view that she might improve if treatment continued. He also requested an independent assessment.
Mr Justice Williams indicated that he had taken into account all of the evidence put before the court. The medical evidence was of the universal opinion that treatment would be futile and could possibly hasten Ms King’s inevitable death. The judge stated:
I recognise the concern and anguish of Ms King’s partner and family and their desire for her to continue to live … However, I can only act on the evidence before the Court. I am satisfied … that it would not be in Ms King’s interests to recommence any treatment involving the administration of fluids … In my opinion, it would not be reasonable to administer treatment, even if it would prolong Ms King’s life for a few days, when it would serve no therapeutic purpose. 5
In the Northern Territory in Melo v Superintendent of Royal Darwin Hospital (2007) 6 the parents of a severely brain injured man sought an injunction to prevent the hospital withdrawing mechanical ventilation and the court provided further insight into relevant considerations. The court has jurisdiction to protect the right of an unconscious person to receive ordinary, reasonable and appropriate medical treatment, sustenance and support, as opposed to extraordinary, excessively burdensome, intrusive or futile treatment. What constitutes appropriate medical treatment in a given case is a medical matter in the first instance. However, where there is doubt or serious dispute in this regard, the court has the power to act to protect the life and welfare of the unconscious person. In this case the medical evidence indicated that there was not the slightest possibility that there was anything that could be done and the parents’ request was refused.
Advance Care Directives
Advance care planning allows patients to have their treatment wishes respected in the event that they become incompetent to communicate their wishes. Advance directives, sometimes called living wills, are documents that enable a competent patient to specify treatment of a future condition, including any limitations to life-threatening treatment. The states and territories legislative frameworks provide varying mechanisms which allow for advance directives and medical powers of attorney. The legislative frameworks of many states require the advance directive to be in a prescribed format and if this is not undertaken the directive may not be relied upon. It is imperative, therefore, that medical practitioners are familiar with the requirements in the states and territories in which they practice.
If the common law principles are consistent with the statutory requirements, the directive can be given verbally or in writing. It is advisable, for clarity and evidence, to have a written advance directive. 7 The elements to consider are threefold:
1 the patient must be competent at the time the directive is made
2 the directive must have been intended to apply to the circumstances that have arisen — broad and vague statements may provide little guidance to medical practitioners
3 there must be no evidence that the patient was unduly influenced at the time the directive was made.
Competent Adults — Legislative Mechanisms
Medical powers of attorney
The power of attorney mechanism, traditionally utilised for business transactions, has been adopted to allow for decisions to be made in the healthcare environment. A medical treatment power of attorney (also referred to in some states as an enduring medical power of attorney) allows an individual (the donor/patient) to appoint another adult (the agent or attorney), to make decisions related to medical treatment when the donor is unable to do so. This is one form of substitute or proxy decision-making. This type of power of attorney is specific to medical treatment and does not extend to include decisions regarding business affairs. The agent/attorney has the legal authority to make decisions regarding medical treatment on behalf of the incapacitated donor, including decisions at the end of life, hence the importance when selecting the attorney. As with all powers of attorney, the donor can revoke the power at any time, provided he or she is legally competent. The need for witnesses applies to all powers of attorney and in most situations one witness must be eligible to sign a statutory declaration and the witnesses must not be the appointed agent. Should the agent (or any proxy decision-maker) be considered not to be acting in the best interests of the patient, and this is where health professionals may be involved, then the courts or guardianship boards may remove the agent/attorney.
State and territory legislative frameworks
Most states and territories have passed specific legislation which incorporate the appointment of a medical power of attorney and/or an advance directive. It is important to remember that this area of the law is an extension of the law of consent which fundamentally recognises the autonomy of the individual. The aim of establishing mechanisms to specify treatment wishes, or providing for the appointment of an agent, allows the patient to choose who will make decisions and what type of treatment decisions will be made on his or her behalf should he or she be incapacitated. For example, a patient who wishes a spouse to make decisions relating to medical treatment when the patient loses competence, or the Jehovah Witness patient who will not accept a blood transfusion as part of the treatment plan. Research demonstrates that medical practitioners working in acute care settings are not expecting patients to refuse therapy, or are unclear about the legal standing of relatives’ input, when treatment decisions need to be made, with resultant dilemmas. 8 This requires knowledge of the existing legal frameworks.
Not every Australian jurisdiction has enacted legislation to deal with refusal of medical treatment, medical powers of attorney or advance directives. The following provides an overview of the differing requirements established in each state and territory.
Victoria
The Medical Treatment Act 1988 applies to competent adults and establishes two key mechanisms. The first mechanism, in Schedule 1 of the Act, allows a person to refuse treatment using a refusal of treatment certificate. The features related to this mechanism require the person to identify the ‘specific’ area of treatment (such as antibiotics or blood) he or she intends to refuse or, more broadly, treatment in ‘general’ may be refused. The patient’s refusal of treatment should relate to treatment of a ‘current condition’ (diagnosis) that must be identified by a medical practitioner. The common law principles of consent have been incorporated into the certificate. Therefore, the patient’s decision to refuse treatment must be made voluntarily and the patient must be competent, that is, of sound mind, and at least 18 years of age. The certificate requires the signature of two witnesses. One must be that of a medical practitioner and both witnesses must be satisfied that the aforementioned criteria are met. The Act is intended to allow individuals to clarify their wishes in relation to treatment and includes a section making it an offence for medical practitioners to continue to provide treatment once the certificate is signed. The sanction under the Act for non-compliance amounts to a fine. This penalty has never been invoked, and where a medical practitioner is acting in good faith, without the knowledge of the certificate, the conduct will not be subject to the fine.
The second mechanism allows a competent adult (the donor) to appoint an agent using a medical power of attorney (called an enduring power of attorney medical treatment; Schedule 2 of the Act). Two witnesses are required to sign this document; one must be eligible to witness a statutory declaration. It is important to note that neither witness should be named as the attorney, this must be a different individual. 9 To assist the agent in understanding the donor’s views about possible medical treatment the Office of the Public Advocate suggests that donors write this information down and give it to the appointed agent. The agent’s power extends to providing consent to treatment and refusing or withdrawing consent to medical treatment. (Schedule 3 of the Act allows an agent or guardian to refuse treatment on behalf of the incompetent patient.) The agent can only refuse treatment if the treatment would cause the donor unreasonable distress or the agent believes, on reasonable grounds, that the donor would not want the treatment to continue. A competent donor can cancel a medical enduring power of attorney at any time. If there is reason to believe that the agent is not making decisions as the donor intended or is abusing his or her power, the Guardianship and Administration Board may revoke or suspend the power of attorney.
Differentiating medical treatment from palliative care
The Victorian legislation allows adults to refuse ‘medical treatment’, but not ‘palliative care’. The Act defines medical treatment as ‘an operation, the administration of a drug or other like substance, or any other medical procedure’. Palliative care is defined as ‘the provision of reasonable medical procedures for the relief of pain, suffering and discomfort or the reasonable provision of food and water’. There is some overlap between these definitions, providing confusion when healthcare decisions were to be made. This was clarified in the case of BWV10 where the family of a woman suffering Pick’s disease (a rare and progressive dementia) wished to have her percutaneous endoscopic gastrostomy (PEG) tube removed. The health facility where she resided refused the request. The PEG tube had been inserted some years earlier but she had deteriorated to the extent that she had no cognitive capacity and medical opinion agreed that she would not improve. There had been no appointment of an agent to articulate her wishes once she became incompetent.
The court decided that the use of a PEG, or any form of artificial feeding, constituted a medical procedure. Justice Morris reasoned that this was the case because ‘artificial nutrition and hydration involves protocols, skills and care which draw from, and depend upon medical knowledge’ and must be subject to regular medical and nursing supervision. 11 His Honour also noted that the Osmolite, the nutritional substance administered via the PEG, was ‘intended to provide complete and balanced nutrition, without the need for any food whatsoever.’12 The court considered whether the provision of artificial feeding in this manner also amounted to palliative care. The court held that palliative care, within the context of the Act, was to mean ‘care, not to treat or cure a patient, but to alleviate pain or suffering when a patient is dying’. 13 His Honour reasoned that the administration of hydration and nutrition via a PEG could not amount to palliative care as this is a procedure ‘to sustain life, it is not a procedure to manage the dying process, so that it [death] results in as little pain and suffering as possible’. 14 The court concluded that:
the intention of Parliament, in excluding the provision of food and water from the concept of medical treatment was to ensure that a dying person would have food and water available for oral consumption, if the person wished to consume such food or water. It can hardly have been the parliament’s intention that dying patients would be forced to consume food and water. 15
The reference to the provision of food and water was intended to apply to the ordinary, non-medical provision of food and water. 16
Northern Territory
The Natural Death Act 1988 in the Northern Territory allows legally competent adults who have a terminal illness to refuse ‘extraordinary’ measures. ‘Extraordinary’ treatment or procedures include medical or surgical measures which prolong life by supplanting or maintaining the operation of bodily functions that are temporarily or permanently incapable of independent operation. The regulations set out the prescribed format required to document an individual’s wishes. The individual may refuse ‘extraordinary’ treatment and procedures generally or specify the particular ‘extraordinary’ treatment and procedures he or she wishes to refuse. Two witnesses must sign the certificate; neither may be the medical practitioner responsible for the treatment of that person. The Act specifies that the withdrawal of, or the non-application of, the ‘extraordinary’ measures to a person with a terminal illness does not constitute a cause of death when made in accordance with a direction of the patient.
South Australia
The Consent to Medical Treatment and Palliative Care Act 1995 allows legally competent adults to provide advance directives. The directions must relate to treatment given where the patient suffers a terminal illness or is in a permanent vegetative state, and where the patient is incapable of making decisions. The directive is required to conform to a prescribed format (Schedule 2 of the Act) and must be witnessed by an authorised person. The patient directions should define those circumstances or conditions regarding acceptable or non-acceptable medical treatment.
There is also provision in the South Australian Act to appoint an agent by a medical power of attorney. The requirements and scope of the agent’s power are outlined in considerable detail in the legislation. The power of attorney includes the main features outlined in the section discussing Victoria, mentioned above. In addition, the agent must indicate acceptance of the appointment; this is evidenced by signing the document. The sole authorised witness also attests that both the donor and donee have signed voluntarily and appear to understand the effect of the power. A person is not eligible to be an agent if they are, in a professional or administrative capacity, directly or indirectly responsible for the medical care or treatment of the patient.
In relation to the provision of palliative care, the agent cannot refuse the natural provision or administration of food, water or drugs to relieve pain. This is similar to the Victorian requirement. The agent cannot refuse medical treatment that would result in the donor regaining capacity to make decisions. Lastly, if the donor has made anticipatory directions the agent must make decisions which are consistent with those directions.
Australian Capital Territory
The Medical Treatment Act 1994 permits competent adults to refuse medical treatment. The refusal may be communicated orally, in writing or in any other way the person is able to communicate. When the refusal of treatment is not in writing, a direction must be witnessed by two adults, with one signatory being a medical practitioner. Provision is made in the Act for a person to provide a written direction. This must be in the prescribed format (Form 1 in the Schedule). The requirements are similar to those in the Victorian certificate in that the fundamental principles of consent are highlighted and the signatures of two witnesses are required. The specific directions to refuse treatment do not have to relate to a current condition, as is the requirement in Victoria, nor must the patient have a terminal illness, as in the South Australian legislation.
The Act defines palliative care in a similar manner to the Victorian legislation. However, instead of explicitly stating a patient cannot refuse palliative care, as in Victoria, the Act does not affect any right, power or duty to provide palliative care. Effectively, this would not allow a person to refuse the reasonable provision of medical and nursing procedures for the relief of pain and suffering, or the reasonable provision of food and fluid. Thus the provision of palliative care remains the responsibility of the medical practitioner.
The Act places the onus on the medical practitioner to take reasonable steps to ensure that the patient has been informed about the nature of the illness, alternative forms of treatment and the consequences of treatment, or of a failure to treat. The Act specifies that the medical practitioner should not follow a patient’s direction to refuse or withdraw treatment unless the practitioner believes that the patient has understood the information regarding the illness and has weighed the options. Moreover, the medical practitioner is not to proceed if the professional believes the direction to withdraw or refuse treatment fails in any way to comply with the Act, or the patient has changed his or her mind. The Act allows for the granting of a medical power of attorney, as provided in Form 2. The requirements are similar to other medical powers of attorney.
Queensland
The Powers of Attorney Act 1998 allows for competent adults to give an advance directive regarding ‘healthcare’ and ‘special healthcare’, and appoint an enduring power of attorney (personal and/or financial). In relation to advance directives the patient must understand the nature and effect of each directive, which only operate while the patient is incompetent. ‘Healthcare’ is defined broadly to include treatment and procedures to diagnose and treat the patient’s condition and includes the withholding or withdrawal of life-threatening measures. Healthcare excludes first aid treatment, the administering of non-prescription drugs and non-intrusive diagnostic examinations. ‘Special healthcare’ is defined to include more precise situations such as removal of organs for donation, sterilisation, termination of pregnancy and participation in research and experimental healthcare. A directive to withhold or withdraw life-threatening measures is dependent upon the application of specific conditions and criteria. An advance directive can only operate when the person:
1 has an illness that is incurable or irreversible and is likely to die within 12 months; or
2 is suffering a persistent vegetative state; or
3 is permanently unconscious; or
4 the person suffers an illness of such extreme severity that there is no chance of recovery.
In addition, the directive to withhold or withdraw life support must be considered good medical practice in the circumstances, and the person to whom it applies must have no reasonable prospect of regaining capacity. ‘Good medical practice’ is defined to have regard to recognised medical practices and ethical standards of the medical profession in Australia.
The Act provides for an adult of sound mind to appoint an enduring power of attorney (personal) to make decisions in relation to healthcare. The Act provides for the appointment of one or more attorneys, who may act jointly or severally. The attorney may make decisions, as in other jurisdictions, including the power to exercise an advance directive for healthcare in the event that the patient’s directions are inadequate. However, the Act explicitly excludes an attorney’s decision in the event that the advance directive is unclear and relates to ‘special healthcare’. The Queensland Act also recognises lawful medical powers of attorney made in other jurisdictions.
In the absence of an advance directive or the appointment of an enduring power of attorney (personal) the right to consent to the treatment of the incompetent adult is deemed to vest in the non-paid primary carer. This person is referred to as the statutory health attorney. The Act refers to a spouse, an adult who has the care of the patient, a close relative or the adult guardian, as persons who may be eligible statutory health attorneys. Moreover, in the absence of a lawful agent or advance directive a medical practitioner is given authority without a consent to provide care that is minor and uncontroversial, provided it is necessary to promote the adult’s health and wellbeing and the health professional is unaware of any objection to the contrary.
Western Australia
Legislation was introduced in 2008: the Acts Amendment (Consent to Medical Treatment) Act amends the existing Guardianship and Administration Act 1990. The legislation makes provision for advance health directives, in a prescribed form and the patient is advised to seek medical or legal advice, presumably for correctness and precision relating to the information and format. A treatment decision in an advance directive operates only in the circumstances specified in that directive. The legislation expressly indicates the matters to be considered in relation to the directive before it is acted on. These include the person’s age at the time the advance directive was made at the period of time that has since elapsed. Other persons may be consulted regarding the directive, probably to confirm the person’s wishes, from an enduring guardian, to the person’s spouse or de facto, the primary carer or child, parent or sibling, in that order.
Individuals can appoint an enduring guardian (enduring power of guardianship) using a prescribed form, including the need for witness signatures at the time of the appointment. More than one individual can be appointed and they are called substitute enduring guardians. The enduring guardian can make decisions to consent to, or refuse consent to, medical or surgical treatment, including life-sustaining measures. The patient may record directions about how the enduring guardian is to perform any of his or her functions. As with other jurisdictions the Administrative Tribunal has the power to intervene, consider decisions and revoke the enduring guardian’s power should decisions not be in the patient’s best interests.
New South Wales and Tasmania
New South Wales and Tasmania rely on guidelines and the common law. The New South Wales Health Department has published guidelines for end of life care and decision-making. 17 The guidelines address a range of issues including the importance of collaboration between the patient and the treating healthcare team. When the patient is incompetent the guidelines recommend the treating team and family draw on existing knowledge of the patient’s personal values and medical condition for shared decision-making. Palliative care should be continued throughout and this includes controlling pain and providing emotional and psychological support. The guidelines also highlight that accountability for decisions rests with the senior clinician regarding the reasonableness of the therapy plan. The guidelines deal with assessment, disclosure, discussion and consensus regarding treatment decisions and plan. There is also specific mention of artificial hydration and nutrition and not for resuscitation decisions, allowing these to be withheld. Children between the ages of 14–18 years should not solely make decisions limiting treatment; the guidelines state that this should be in conjunction with family and health professionals. The New South Wales Health Department recommends that health facilities develop policies in keeping with these guidelines.
The New South Wales guidelines recommend that before an advance directive has sufficient authority it must satisfy at least three criteria.
1 The directive must be specific; it must be clear that the direction applies to the clinical circumstances that arise and provide adequate guidance as to care.
2 The advance directive must be current, in so far as it must reflect the existing wishes of the patient. The guidelines state that the directive should be reviewed periodically, particularly after an illness or change in health status.
3 The person must be competent to make the directive, this includes appearing to comprehend, retain and weigh the relevant information. The guidelines suggest that it is not essential the document be witnessed, but recommend that this be undertaken. There is no precise format for a written advance directive, although the guidelines provide information of organisations where they can be obtained.
Tasmania does not have a separate legislative framework in relation to refusal of treatment decisions and advance directives, hence the common law applies. The guardianship legislation (discussed below) does, however, allow for the appointment of an enduring guardian who can make decisions regarding treatment when the patient is unable to participate by reason of disability.
Patients’ Autonomy Respected with the Exception of Unlawful Treatment
It is important to note that regardless of the legislative or policy frameworks within Australia an individual patient can withdraw his or her refusal to treatment or change his or her mind at any time. In addition, none of the mechanisms allow for care to be provided which is unlawful. For example, a patient could not provide an advance directive, or delegate power to an agent or attorney, that provided for the suffocation of that patient as soon as he loses competence, as this would amount to homicide. Patients and agents must operate within the boundaries of what is considered, in the particular circumstances, ‘reasonable care’ although this may well include the withdrawal of life support.
Know your state/territory framework and assist patients to plan
Medical practitioners must be able to identify the state legislative provisions and be familiar with the prescribed documents, as there are significant differences between the various Australian state and territory jurisdictions. Where no legislative framework exists, or the person has not completed the relevant documentation, then the common law of consent applies. Where a patient is competent it may be prudent to complete an advance directive or appoint a medical power of attorney.
The Respecting Patient Choices (RPC) program, initially established in Victoria, has been introduced into health facilities in a bid to encourage patients to discuss future therapy, including end of life care. 18 The program provides for the education of staff, who then assist patients to record advance care plans and appoint medical powers of attorney. Evaluation of the RPC program found that 70% of patients introduced to the RPC program went on to document preferences for future therapy and that these were easily located in patient files. Importantly, patients also wanted to discuss their illness and impending therapy options, but they expected medical practitioners to initiate the conversations with them. 19
Incompetent Adults — Guardianship Laws
When adult patients are incompetent due to disease, birth defects or injury, medical practitioners may be uncertain as to their role when providing treatment. Obtaining a consent or ascertaining patient wishes in these situations is generally not possible. If a patient has not made a relevant advance directive or appointed a medical power of attorney, then the issue of treatment direction and who may provide consent, or refuse treatment, is raised. The healthcare team may rely on the nearest next-of-kin. However, there is no clear judicial authority to support this practice, despite the fact that anecdotal evidence suggests that attending family members decide. Guardianship legislation has, therefore, been enacted in all states and territories with the primary purpose of protecting incompetent or disabled people. Moreover, in recent years a number of jurisdictions have identified specific categories of people who, it is considered, are likely to have a relationship with the incompetent patient and thus be suitably located to be involved in decisions. The guardianship legislation in New South Wales, Queensland (called a statutory health attorney), Victoria, Tasmania and Western Australia has been amended to identify appropriate individuals, provided they are available and willing to act. This individual is called the ‘person responsible’. The legislation identifies a system where priority is given to a person responsible to make decisions. This person is identified from a list of potential decision-makers. For example, in Victoria, this includes: a person who is an agent under a medical power of attorney; a person appointed by the Victorian and Civil Administrative Tribunal; a spouse or domestic partner; a primary carer; or the nearest relative over 18 years of age.
Where there is no person responsible or difficult decisions must be made, the guardianship laws allow for another type of substitute decision-maker, a guardian. Guardianship legislation has been enacted in all states and territories with the primary purpose of protecting incompetent or disabled people. The legislation allows for the appointment of a guardian to act in the best interests of the disabled person, and to ensure general care is adequately provided; this includes healthcare and living arrangements.
Individuals who may attract guardianship laws
The group of individuals to whom the legislation in the various jurisdictions applies is similar but the definitions in each Act vary. For example, in New South Wales, individuals who may require a guardian include people with a disability. Section 3(2) of the Disabilities Services and Guardianship Act 1987 (NSW) defines a disabled person as one who is intellectually, physically, psychologically or sensorily disabled, or who is of advanced age, or who is a mentally ill person within the meaning of the Mental Health Act 1990, or who is otherwise disabled. In Victoria, a disabled person is defined in s 3 of the Guardianship and Administration Act 1986 to include adults who suffer an intellectual impairment, mental illness, brain damage, physical disability or senility. Clearly, these are very broad definitions which would apply to many patients. The South Australian and Western Australian definitions are also expansive. The remaining jurisdictions, the Australian Capital Territory, the Northern Territory, Queensland and Tasmania, have slightly more restrictive definitions in that they state ‘disabled’ relates to persons who are intellectually or mentally impaired.
The legislation differs slightly in relation to the terminology and scope of the type of guardian who may be appointed. Most jurisdictions allow for the appointment of a full-time (plenary) guardian or limited (emergency) guardian. The full-time guardian tends to have the same powers as a parent over a child such as to make decisions as to where the disabled person should live and consent to healthcare. The limited guardian usually has specific powers and/or time limits conferred by the guardianship board. Should a decision be required for a procedure at short notice, the limited guardianship order would most likely be used.
Appointing a guardian or financial manager
The criteria upon which a guardianship board decides that a guardian or financial manager should be appointed requires at least three issues to be addressed. The board must:
1 decide if the patient has a disability within the meaning of the legislation
2 determine whether the person is unable to make decisions or manage various aspects of his or her life as a result of that disability
3 consider whether there is a need to appoint a guardian.
The philosophy underpinning this legislation aims to ensure that the guardian takes the least restrictive approach when making decisions for a disabled or incompetent individual. Wherever possible, the wishes of the disabled person are to be taken into account. It is important to note that the guardian does not automatically handle the financial affairs of the individual. Most legislative frameworks allow for the appointment of a separate person, called an administrator or financial manager, to handle the disabled person’s financial affairs. It is possible to be both a guardian and a financial manager but this would depend on the determination of the board.
When a board is making an order for the appointment of a guardian, there are a number of relevant considerations regarding the suitability of the individual proposed. The guardian:
• should not have a conflict of interest with the disabled person
• is obliged to advocate on their behalf and protect the disabled person from neglect and abuse
• should have a willingness to act in the best interests of the disabled person, taking into account their wishes wherever possible
• should encourage the disabled person to care for him or herself.
If there is no-one available to be appointed, then many jurisdictions allow for the appointment of a public advocate or public guardian. If the board is considering the appointment of an administrator, it may appoint an accountant or the State Trustee if the financial affairs of the disabled person require specific expertise.
Recent decisions regarding limiting or withdrawing treatment
The guardianship boards/tribunals and appointed guardians do not have the same broad powers as the superior courts, nonetheless they are frequently becoming involved in decisions to withdraw or refuse treatment. In Re AG [2007] 20 an intellectually disabled woman, who lived alone, had been diagnosed with a renal tumour with lymphadenopathy in the abdomen and pelvis, and possible secondary brain tumours. Her prognosis was very poor and she had a history of refusing medical treatment. She accepted that she had cancer, but refused to acknowledge the renal tumour. The public guardian was asked to make a decision to refuse resuscitation and dialysis. The Guardianship Tribunal was approached for direction. The tribunal found that the guardian could provide consent or refuse care and this included palliative care. The tribunal stated that the weight of authority supported the notion that limiting treatment can promote a person’s health and wellbeing if it prevented futile treatment. The tribunal also found that guardians involved in healthcare decisions could be involved in advance care planning.
In Queensland in Re HG [2006] 21 the guardianship tribunal was asked to determine whether a man suffering from Wernicke’s encephalopathy and Korsakoff’s psychosis and who had suffered a brain stem stroke could have artificial hydration and feeding discontinued. The tribunal found that the medical evidence was sufficient to indicate that continuation of the feeding and hydration was inconsistent with good medical practice and that it should cease. The case also highlighted that a finding of good medical practice did not require unanimous support from all medical opinion.
In Western Australia in BTO [2004] 22 the guardianship board, interpreting s 119 of the Guardianship and Administration Act 1990 which deals with consent to treatment, allowed the interpretation to be extended to include withdrawal of artificial nutrition and hydration. The board found that consent for withdrawal of treatment could be given, provided it was in the patient’s best interest. In this case a man had suffered a severe stroke and was in a coma. The board interpreted the legislation to include consent to medical procedures and decisions to withdraw life-sustaining procedures. A guardian was appointed with the power to refuse artificial hydration and feeding.
Are guardians always required when patients are incompetent?
As mentioned above, there are times when the patient is unable to make decisions regarding treatment and there is no agent or guardian. In these situations, it is clear that patients receive treatment. Often the treating medical practitioner will discuss the treatment options with the next-of-kin and then treatment proceeds. There is English case law which suggests that a medical practitioner may act in the absence of the patient’s consent where it is ‘not practicable to communicate with the assisted person’ and ‘the action taken … such as a reasonable person would in all the circumstances take, acting in the best interests of the person’. 23 This view is far less clear in Australia as McHugh J states:
the approach of their Lordships [in Re F] transfers the issue [of what medical treatment is most appropriate for a patient] to the medical profession for determination … Whatever may be the position in England, the approach of their Lordships is not consistent with the common law of Australia. 24
Thus, although the Australian judicial position remains unclear, treatment decisions need to be made daily regarding incompetent patients. In many jurisdictions, it is common medical practice to treat a patient when it can be asserted the treatment is in thebest interests of the patient. Should there be any concerns expressed by the family, carers or members of the healthcare team regarding the nature, scope or need for the treatment, then the appointment of a guardian is most preferable.
In Victoria, the Guardianship and Administration (Amendment) Act 199725 has attempted to streamline decisions for incompetent adults. If there is a refusal of treatment certificate under the Medical Treatment Act 1988, the wishes of the patient prevail. If there is no certificate, and the medical practitioner considers treatment to be in the best interests of the patient, the practitioner may give notice to the public advocate and treatment will be given. 26 Treatment includes medical and dental care. If there is a ‘person responsible’ for the patient and that person does not agree to the proposed treatment then the medical practitioner must give a notice (called a 42M) to that person and the public advocate. 27 The notice states that there has been no consent provided by the ‘person responsible’ and unless there is an application to oppose the decision made to the Victorian Civil and Administrative Tribunal (VCAT) within 7 days, the practitioner may provide the treatment. If the ‘person responsible’ responds and makes an application to VCAT, then VCAT must make a ruling as to whether treatment will proceed or not. (See the guardianship and administration flowchart in the appendices at the end of the book.)
Enduring power of guardianship
The changes to the legislation in Victoria and Tasmania28 have established the ability of a competent adult (the donor) to appoint a guardian. The guardian acts on behalf of the donor when the donor is no longer able to make reasonable decisions about matters including medical treatment, accommodation, access to services and other non-financial personal decisions. In Victoria, the guardian’s scope of decision-making is wider than that of an enduring power of attorney medical treatment. Moreover, should a donor have appointed an agent and a guardian, both have the ability to make decisions in relation to medical treatment. The enduring guardian can also make lifestyle decisions. The legislation, however, has foreseen the potential for conflict. Should there be disagreement between the two appointed individuals, the decision of the agent, appointed pursuant to the enduring power of attorney medical treatment, will take priority.
Distinguishing Suicide and Euthanasia with Refusal of Treatment and End of Life Decisions
There may be some confusion as to whether a patient’s refusal decision can be considered suicide or amount to euthanasia. The common law elements of suicide require that a person who intends to commit suicide must deliberately intend to kill himself/herself, and at the same time, must cause their own death. Given that patients have a common law and statutory right in most jurisdictions to refuse treatment, it can be clearly argued that a patient who suffers a serious illness and makes a decision to refuse therapy is not committing suicide. Conversely, should a medical practitioner consider that a patient may attempt suicide, five jurisdictions have made provision in their crimes legislation relating to this area. The legislation provides that it is not an assault or battery to restrain or attempt to prevent a person from committing suicide. 29 The expected practice for health professionals in Australia is to provide emergency treatment to preserve life.
The word ‘euthanasia’ is not a word recognised in law; there is no crime of euthanasia. The word loosely means ‘good death’ and while the definition of euthanasia can be broadly interpreted, the word has been described in varying contexts. Euthanasia has been used to describe the death of a person when disconnected from a life support machine (involuntary euthanasia). Conversely the term has been used where a competent patient wishes to be assisted to die (voluntary euthanasia). The term should also be distinguished from homicide. For example, where medical care is provided, such as the administration of large doses of morphine, the principle of ‘double effect’ has been accepted by the courts. The reasoning is as follows: while the large doses of analgesia may shorten the patient’s life, the actions of the medical practitioner are to relieve the patient’s pain and suffering, hence the ‘double effect’ of the practitioner’s action. The courts recognise that it is the intention of the practitioner that must be distinguished and where it is to relieve pain and suffering it will not amount to the crime of homicide. The use of the word ‘euthanasia’ in the context of current healthcare practices should be avoided as it creates confusion.
Not for Resuscitation Orders
Should a patient suffer collapse requiring cardio-pulmonary resuscitation the not for resuscitation (NFR) order signifies that resuscitation will not be commenced by the healthcare team. Not for resuscitation and do not resuscitate (DNR) or no-cardio-pulmonary resuscitation (No CPR) orders usually become relevant in situations in which a patient’s condition is unlikely to improve and is considered to be clinically futile. This has traditionally been a decision made by the treating medical practitioners. However, with the existing recognition of advance directives the not for resuscitation decision can also be viewed as a patient or attorney’s decision to refuse treatment. Therefore, the decision may be a medical one where the burden of resuscitation for the patient outweighs the benefits or likelihood of success, or it may be that the patient with a chronic or terminal illness wishes to address this decision as part of an advance directive. This requires the often difficult conversation with the patient or patient’s proxy, regarding future care and expectations in order to reach some clear decision. Regardless of who generates the decision, wherever possible it is desirable that a NFR order be based on a shared perception and understanding of what amounts to a benefit worth pursuing. 30 When considering who is involved in making the decision, it follows that this should comply with the law of consent. Therefore, the patient or attorney should be involved in making the decision, or at least informed when the medical team believe that resuscitation is futile.
The following issues should be addressed and documented in the patient notes:
• a brief statement regarding competence or incompetence of the patient
• who was involved in the decision, that is, the patient or the patient’s substituted decision-maker and any others included such as family and health team members
• a description of the discussion around the decision, including the reasons and wishes of the patient (wherever possible)
• where the patient or substitute decision-maker is not involved in the decision, the reason/s should be recorded
• the precise scope of the order.
Many healthcare facilities have criteria clearly listed and incorporated into policies and any order should be reviewed regularly. Covert practices such as abbreviations and symbols used to denote the order can create confusion and brevity can also be problematic. Australian jurisdictions that have enacted legislative frameworks in relation to advance directives provide some assistance to patients. It is considered that a NFR order is appropriate where it conforms with the patient’s or substitute decision-maker’s wishes. Table 7.1 provides a summary of the type of treatment an incompetent patient may require and the necessary considerations health professionals should address prior to providing treatment.
| ∗Special or controversial care could include any experimental procedures, sterilisation, termination of pregnancy, and any aversive treatment or withdrawal of life support. Disagreement between family or health carers may be in relation to any care provided. |
|
| Type of treatment | Consent considerations |
|---|---|
|
Emergency/life-threatening
Routine care, includes non-intrusive examination
|
No consent required. |
| All other care minor/major |
• Has the patient specified treatment according to the relevant legislative framework? Has an agent/guardian been appointed?
• Are there any guidelines (e.g. NSW or Tasmanian Health Department)?
• Does the guardianship board have a ‘person responsible’ list to guide health professionals?
• If no next-of-kin or relatives in disagreement and healthcare team is uncertain then guardianship board.
|
| ∗ Controversial care, special care or where there is disagreement as to care by family and/or healthcare team. | Guardianship board or court. |
To ensure that you have identified and understood the key points of this chapter please answer the following questions.
1 Does the common law allow patients to refuse treatment even if they might die?
2 Can treatment be withdrawn from incompetent patients? What considerations should be addressed?
3 Select and compare two legislative frameworks allowing patients to provide advance directives. Discuss which framework you find more accommodating from a clinician’s viewpoint.
4 Is there a difference between palliative care and medical treatment?
5 Who may be a ‘person responsible’ and what role do they play in patient care?
6 What is the difference between suicide and euthanasia?
7 Outline the key issues necessary before a guardianship board can appoint a guardian and discuss the relevant considerations regarding the suitability of the potential guardian.
8 A decision has been made that a patient should be not for resuscitation. Describe the issues which should be addressed and documented in the patient file.
Further reading
Biegler, P.; Cameron, S.; Savuiescu, J.; Skene, L., ‘Determining the validity of advance directives’, Medical Journal of Australia 172 (2000) 545.
Cavell, R., ‘Not for resuscitation orders: the medical, legal and ethical rationale behind letting patients die’, Journal of Law and Medicine 16 (2008) 305.
Freckelton, I., ‘Withdrawal of Life Support: The ‘Persistent Vegetative State’ Conundrum’, Journal of Law and Medicine 1 (1993) 35.
Kerridge, I.; Lowe, M.; Stewart, C., Ethics and law for health professions. (2009) Federation Press, Sydney.
Lanham, D., ‘Withdrawal of artificial feeding from patients with PVS’, Current Issues in Criminal Justice 6 (1) (1994) 135.
Linden, S., ‘Refusal of medical treatment — clarification of rights and responsibilities’, Australian Health Law Bulletin 11 (6) (2003) 61–64.
Manning, J., ‘Autonomy and the Competent Patient’s Right to Refuse Life-prolonging Medical Treatment — Again’, Journal of Law and Medicine 10 (2002) 239.
Skene, L., ‘When can doctors treat patients who cannot or will not consent?’, Monash University Law Review 23 (1) (1997) 77–91.
Stewart, C., ‘Who decides when I can die? Problems concerning proxy decisions to forgo medical treatment’, Journal of Law and Medicine 4 (4) (1997) 386.
Thiagarajan, M.; Savalescu, J.; Skene, L., ‘Deciding about life-support: A perspective on the ethical and legal framework in the United Kingdom and Australia’, Journal of Law and Medicine 14 (2007) 583.
Winn, G., ‘Changes to the law of guardianship and administration’, Law Institute Journal of Victoria February (2000) 95.
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