REASONS FOR DECISION
1 This case raises the question of whether the Public Guardian has power to approve an advance care plan or palliative care plan for a protected person that permits life-sustaining treatment to be withdrawn.
2 FI is the mother of a protected person, DFI. DFI's affairs are the subject of a limited guardianship order made by the Guardianship Tribunal appointing as guardian the Public Guardian. The order was first made on 27 June 2003, and was renewed on 5 December 2007. The terms of the order grant to the Public Guardian functions in respect of Health Care and Medical and Dental Consents, as follows:
' Health Care
To determine what health care and major and minor medical treatment [DFI] may receive.
This includes the authority to make end of life care decisions including advance care planning.
Medical and Dental Consent
Where [DFI] is not capable of giving a valid consent to her own treatment, to make substitute decisions on her behalf about medical or dental treatment proposed for her by others under the provisions of Part 5 of the Guardianship Act.'
3 FI applied in February 2008 to the Public Guardian for the making of an 'advance care plan' for DFI.
4 While the concept of a palliative care plan is, I think, relatively well known, the concept of an 'advance care plan' is less well understood. The term seems to have originated in the United States, and is now in use among health practitioners in Australia.
5 A NSW Health Department Report of 2004, Using Advance Care Directives, gives the following explanation of advance care planning and how it is different from an advance care directive, p 1:
'Advance care planning refers to the process of preparing for likely scenarios near the end of life and usually includes assessment of, and dialogue about, a person's understanding of their medical condition, values, preferences, and personal and family resources. An advance care directive (ACD), sometimes called a 'living will', is a document that describes one's future preferences for medical treatment in anticipation of a time when one is unable to express those preferences because of illness or injury. Completion of an ACD ideally should be one component of the broader advance care planning process.'
6 It is important to emphasise that this is a case about the making of an advance care plan, not an advance care directive. (The Public Guardian's view, and the view of the Guardianship Tribunal, is that guardianship powers do not extend to the making of advance care directives.)
7 The Public Guardian, by email dated 11 February 2008, gave a considered reply refusing to make a plan. The final paragraph stated:
'Based on current information your daughter's health is stable and there are no pending issues that require the Public Guardian to make any decisions. If in the future a situation should arise the Public Guardian expects to be consulted regarding all end of life, palliative and 'no cardio-pulmonary resuscitation' decisions.'
8 FI has applied for review by the Tribunal of that decision.
9 The right to apply to the Tribunal is given by s 80A of the Guardianship Act 1987. Applicants may include the protected person, the spouse of that person, a carer, and 'any other person whose interests are, in the opinion of the ADT, adversely affected by the decision' ((2)(d)). There was no dispute that FI was such a person. The application may relate to a 'decision of the Public Guardian under this Act that is made in connection with the exercise of the Public Guardian's functions under this Act as a guardian': s 80A(1).
10 The application was a little out of time, but no issue has been made of that in the proceedings.
11 At the first directions hearing after lodgement of the application, the Tribunal asked the applicant to clarify more clearly what it was that she had asked the Public Guardian to do. She said it was to implement the Guardianship Order in the following way:
1. The Public Guardian should authorise no life sustaining treatment or drugs for DFI.
2. The Public Guardian should advise all interested parties in writing of that decision.
12 DFI is now 24 years old. She sustained severe traumatic brain injury in a car accident that occurred on 31 December 1999. Her mother describes her state as a 'permanent vegetative state'. An officer of the Public Guardian described her state to the Tribunal as 'post-coma unresponsiveness'. She is currently resident in a nursing home.
13 FI states in regard to her daughter's condition, 'In layman's terms [DFI] is brain dead and kept physically alive by a brain shunt, breathing tube, feeding tube, catheter. She has no awareness or ability to communicate, suffers severe spasticity so that her body and limbs are severely twisted and rigid like steel rods.' She went on to refer to the vulnerability of her condition to assault and mistreatment, and her inability to lead any kind of life involving social activity, communication or going on outings.
14 The most recent medical assessment in the material before this Tribunal is dated 4 April 2008 from Dr Clayton King, MB BS FAFRM (RACP), Consultant in Rehabilitation Medicine, and Medical Director of the Brain Injury Unit at the Royal Rehabilitation Centre, Sydney for 15 years.
15 He reported that DFI 'remains completely dependent in all self-care and mobility, requiring feeding gastrostomy and tracheostomy. She continues to have deformity of lower limbs and limited upper limb function with flexion posturing more marked on the right'. He referred in his report to her level of cognate activity. He said that staff had noted her 'to respond and smile to different stimuli and to orient and apparently remain attentive to television'. She had also responded 'positively with staff to events in cricket telecasts'. She responded positively 'to vocal tone and touch in being comforted when distressed'. On the other hand, '[n]o utility had been observed with Yes/No cards or specific requests'. He estimated her life expectancy in an environment of the present kind as 25 to 30 years, about half the normal. As to whether the description 'permanent vegetative state' is apt, Dr King said that the limited responses and limited movements that she engages in 'are inconsistent' with that state.
The Preliminary Question
16 These reasons do not deal with the ultimate question raised by this application - whether a plan should be developed.
17 They deal with the prior question noted in para [1] of these reasons - whether the Public Guardian has power to approve an advance care plan or palliative care plan for a protected person that permits life-sustaining treatment to be withdrawn.
18 'Power' for this purpose has two aspects - one, whether the powers given to the Guardianship Tribunal by the Guardianship Act allow it to invest the guardians it appoints with an authority that extends to the making of advance care plans which include provision for the withdrawal of life-sustaining treatment; and two, whether, if the statutory power exists, how explicit the terms of a limited guardianship order need to be in this respect.
19 The more important matter, obviously, is whether there are any limitations effected by the Guardianship Act which stand in the way of the appointed guardian being authorised to enter into advance care plans that involve the withdrawal of life-sustaining treatment.
20 The issue arises because of observations made by the Tribunal (Hennessy DP) in a decision in 2006 suggesting that a guardian appointed under the Guardianship Act does not have such a power: WK v Public Guardian (No 2) [2006] NSWADT 121.
21 The Public Guardian has filed detailed submissions contending that the Tribunal erred and that the Public Guardian is entitled in the exercise of a health care function to make decisions to withdraw life-sustaining treatment. The applicant, FI, has also filed submissions to the same effect.
22 In the ordinary course in this Tribunal, members at first instance follow considered decisions on points of law made by other members. In this instance I am in effect being asked, being the President of the Tribunal, to reconsider the reasons in WK, and not follow them. It is a de facto appeal. Because of the importance of the matters raised, and as there is no relevant Appeal Panel authority, I indicated I would proceed to reconsider the conclusions expressed in WK.
23 FI disagrees with the Public Guardian over the way her application should be dealt with if the question is resolved in favour of the Public Guardian's submission. The Public Guardian submits that the application should be remitted to her Office for further consideration, pursuant to s 65 of the Administrative Decisions Tribunal Act 1997. The applicant would prefer that this Tribunal retain the matter, and formulate an advance care plan, as it may do as substitute administrator.
Assessment
24 Many of the leading decisions, to which the Public Guardian's submissions in particular refer, contain lengthy dissertations covering the law, medical ethics, statements from ethicists, moral philosophers and religious teachings. I see no need, on this occasion, to add to that literature.
25 I will begin by referring to the decision in WK.
26 WK was a person with an interest in the welfare of X, a protected person. X was 73 years old, had end stage kidney disease and was suffering from dementia. WK applied to the Tribunal to prevent the Public Guardian implementing a palliative care management plan to which the Public Guardian had agreed on X's behalf. The plan was multi-faceted, and included two elements dealing with withdrawal of treatment in end of life circumstances: withdrawal of dialysis treatment, and no further aggressive treatments, including cardio-pulmonary resuscitation or intubation when he dies. It was expected that if dialysis was withdrawn, WK would die within two weeks. The plan had been developed in consultation with immediate family members (the person's sister in law and nephew) and the renal and palliative care team at the hospital. The objector was a long time friend and business associate of X.
27 The Guardianship Tribunal order in WK's case conferred Health Care and Medical and Dental Consent functions. They were in the same terms as the orders in this case, except that the Health Care order did not have the second sentence referring to end of life circumstances. The Guardianship Tribunal now includes the second sentence in response to the following observations in WK (emphasis added):
'9 The first function the Guardianship Tribunal gave to the Public Guardian was the health care function which allows the Public Guardian to determine what health care and major and minor medical and dental treatment Mr X may receive. The decision to consent to the withdrawal of dialysis treatment is not a decision about what major or minor medical treatment he may receive. The term "health care" is a general term. While it is possible that it could include consenting to "end-of-life" decisions, I am reluctant to give it such a broad interpretation in the absence of some clear indication that that is what the Guardianship Tribunal intended. '
28 If this was the limit of the difficulty, it could be resolved by a drafting change (as has now occurred). But the Tribunal went on to hold at para [12]:
'12 A decision to withdraw life sustaining medical treatment, is not a decision carried out for the purpose of promoting and maintaining the health and well being of a person. These objects [a reference to s 32 of the Act] and the definition of "medical treatment" in s 33, lead to the conclusion that while the Public Guardian may consent to treatment which will prolong the life of a person, there is no power to consent to the withdrawal of treatment that will result in a person's death.'
29 In a subsequent closely reasoned decision, the Guardianship Tribunal, with its President presiding, expressly disagreed with the above statement: Re Miss AG, 5 February 2007. The Public Guardian agrees with the Guardianship Tribunal's decision, and submits that the mistake made in WK was to treat Part 5 of the Act as applicable to decisions that involve the withdrawal of treatment.
30 Part 5 (ss 32-48B) is headed 'Medical and Dental Treatment'. It contains a number of provisions defining the circumstances in which consents for medical and dental treatment must be given before treatment can proceed (save in emergencies), who may give the consents if the protected person is unable to do so, and subjecting persons who proceed to treat without consent to possible prosecution for criminal offences.
31 The Public Guardian's submission, in essence, is that the Part 5 regime is only concerned with the performance of medical (or dental) procedures which involve proactive intrusions into the bodily integrity of the patient. It is not concerned with the making of choices not to give treatment or to cease treatment. These matters are to be addressed by reference to the general authority vested in the guardian by the guardianship order and the law under which those orders are made. There is no need to address them, in addition, by reference to Part 5. Accordingly the Tribunal was mistaken in having regard to Part 5 in reaching the conclusion found in para [12]. Moreover, the ordinary health care guardianship function embraces health care decisions connected with end of life decision-making.
32 It is submitted that, properly understood, Part 5 is designed to provide a legal basis for action that would, in the absence of consent, constitute an assault at common law by medical staff and others involved in supplying treatment. Part 5 established the conditions under which medical staff can be assured that they have the informed consent of substitute decision-maker in circumstances where patients can not themselves give consent. A substitute decision-maker can be the Guardianship Tribunal itself, the appointed guardian, and persons responsible for the patient.
33 There are numerous indications, it is submitted, that the provisions are concerned with the 'carrying out' of medical treatment, as distinct from the cessation or omission to carry out medical treatment. I will not in this decision refer to all the provisions mentioned by the Public Guardian reflecting this point. The following will, I think, suffice. Section 34 refers in sub-s (1)(b) to the 'carrying out' of treatment:
' 34 Application of Part
(1) This Part applies to a patient:
(a) who is of or above the age of 16 years, and
(b) who is incapable of giving consent to the carrying out of medical or dental treatment.'
34 The definition section, s 33, which was emphasised by the Tribunal in its reasons, has the same orientation. It provides:
' medical or dental treatment or treatment means:
(a) medical treatment (including any medical or surgical procedure, operation or examination and any prophylactic, palliative or rehabilitative care) normally carried out by or under the supervision of a medical practitioner, or
(b) dental treatment (including any dental procedure, operation or examination) normally carried out by or under the supervision of a dentist, or
(c) any other act declared by the regulations to be treatment for the purposes of this Part,
(and, in the case of treatment in the course of a clinical trial, is taken to include the giving of placebos to some of the participants in the trial), but does not include:
(d) any non-intrusive examination made for diagnostic purposes (including a visual examination of the mouth, throat, nasal cavity, eyes or ears), or
(e) first-aid medical or dental treatment, or
(f) the administration of a pharmaceutical drug for the purpose, and in accordance with the dosage level, recommended in the manufacturer's instructions (being a drug for which a prescription is not required and which is normally self-administered), or
(g) any other kind of treatment that is declared by the regulations not to be treatment for the purposes of this Part.'
35 None of the items involve action, it is submitted, that takes the form of cessation of treatment or removal of physical connections to the body (such as tubes). They are concerned with interventions that affect the bodily integrity of the person.
36 Another provision, with the same orientation, is s 35:
' 35 Offences
(1) A person must not carry out medical or dental treatment on a patient to whom this Part applies unless:
(a) consent for the treatment has been given in accordance with this Part, or
(b) the carrying out of the treatment is authorised by this Part without any such consent, or
(c) the treatment is carried out in accordance with an order made by the Supreme Court in the exercise of its jurisdiction with respect to the guardianship of persons.
Maximum penalty:
- in the case of special treatment or treatment in the course of a clinical trial (on conviction on indictment) - imprisonment for 7 years, or
- in the case of minor or major treatment (on summary conviction) - imprisonment for 1 year or 10 penalty units, or both.
(1A) Subsection (1) (c) does not apply in the case of special treatment that is special treatment of the kind referred to in paragraph (a) of the definition of special treatment in section 33 (1) or special treatment prescribed by the regulations for the purposes of this subsection.
(2) This section does not limit the operation of any other Act or law under which minor treatment may be carried out on a person without that person's consent.'
37 Also cited in support is s 37 dealing with emergency action undertaken without specific consent:
' 37 When treatment may be carried out without any such consent
(1) Medical or dental treatment may be carried out on a patient to whom this Part applies without consent given in accordance with this Part if the medical practitioner or dentist carrying out or supervising the treatment considers the treatment is necessary, as a matter of urgency:
(a) to save the patient's life, or
(b) to prevent serious damage to the patient's health, or
(c) except in the case of special treatment - to prevent the patient from suffering or continuing to suffer significant pain or distress.
(2) Minor treatment may (subject to subsection (3)) also be carried out on a patient to whom this Part applies without any consent given in accordance with this Part if:
(a) there is no person responsible for the patient, or
(b) there is such a person but that person either cannot be contacted or is unable or unwilling to make a decision concerning a request for that person's consent to the carrying out of the treatment.
(3) The medical practitioner or dentist carrying out, or supervising the carrying out of, minor treatment in accordance with subsection (2) is required to certify in writing in the patient's clinical record that:
(a) the treatment is necessary and is the form of treatment that will most successfully promote the patient's health and well-being, and
(b) the patient does not object to the carrying out of the treatment.'
38 In para [12] the Tribunal alluded to the objects provision for the Part, s 32, which provides:
' 32 Objects
The objects of this Part are:
(a) to ensure that people are not deprived of necessary medical or dental treatment merely because they lack the capacity to consent to the carrying out of such treatment, and
(b) to ensure that any medical or dental treatment that is carried out on such people is carried out for the purpose of promoting and maintaining their health and well-being.'
39 The Tribunal considered that the words 'promoting and maintaining their health and well being' pointed towards a legislative intent not to permit action by way of withdrawal of treatment that might lead to a person's life ending. The Public Guardian in reply notes, however, that the opening words of object (b), like the provisions already mentioned, have as their subject the 'carrying out' of medical or dental treatment.
40 Advance care plans (or palliative care plans) will often have a mix of proactive treatment elements and elements involving cessation of medical treatments in particular circumstances. In my view, the inclusion within an advance care plan or a palliative care plan of an element which provides for the withdrawal of treatment in certain circumstances is not unlawful because of any of the provisions of Part 5. I agree with the submissions that these provisions are directed to proactive medical interventions. There may be elements of the plan that will need to satisfy the special provisions of Part 5.
41 It remains the case that any advance care plan or palliative care plan must only be entered into in the proper exercise of the functions vested in the Public Guardian.
42 The next question is whether there is anything in the general provisions of the Guardianship Act which precludes a guardian granted a health care function from exercising that function in a way that involves the making of advance care plans or palliative care plans.
43 In this case, like WK, the guardianship order was a limited guardianship order (s 16) as distinct from a plenary guardianship order (s 21). Section 16(2) provides:
'(2) A limited guardianship order shall specify:
(a) the extent (if any) to which the guardian shall have custody of the person under guardianship, and
(b) which of the functions of a guardian the guardian shall have in respect of the person under guardianship.'
44 It is notable that the Guardianship Act makes no attempt to define the 'functions of a guardian'. These words therefore should be given a breadth of interpretation consistent with the general law's historical understanding of the scope and role of the guardian. The object of guardianship is to enable the making of decisions that the subject would have been able to make had he or she had legal capacity to do so: to that effect, see s 21(2A); and s 21C. In that regard, I agree with the submissions that it is therefore necessary to consider the legal rights which competent persons enjoy to make decisions affecting their own health care, including in relation to end of life decision-making.
45 I agree that the following propositions are well established:
- Such a person has the right to refuse consent to any medical treatment, even if the treatment is objectively in the person's best interests, including if the treatment may be necessary to save or sustain that person's life: Airedale National Health Service Trust v Bland [1993] AC 789 at 891 per Lord Mustill; In Re C (Adult Refusal of Treatment) [1994] 1 WLR 290; and
- It is an unlawful trespass to touch a person for the purposes of providing medical treatment unless that person has provided consent to the treatment (or consent is otherwise implied by operation of law): Secretary of Department of Health and Community Services v B (Marion's Case) (1992) 175 CLR 219 at 309-310.
46 In the case of unconscious or incompetent patients, the duties imposed on medical practitioners to provide treatment (including life-sustaining treatment) rest on consideration of what is in the patient's best interests for the purpose of preservation of life. But the law recognises that clinical judgments are involved, and that there is no need to continue treatments which are therapeutically ineffective, or are extraordinary, excessively burdensome, intrusive or futile. The law does not assume that a patient's best interests are served by extending the patient's life by whatever means are available and for as long as possible. As to these principles see, variously, Northbridge v Central Sydney Area Health Service (2000) 50 NSWLR 549 at 553-554; Airedale National Health Service; Auckland Area Health Board v Attorney General [1993] 1 NZLR 235 at 252-253; Re G [1997] 2 NZLR 201; Messiha v South East Health [2004] NSWSC 1061 at [22]-[28]; Hunter Area Health Service v Marchlewski (2000) 51 NSWLR 264 at 268 [91].
47 In my view, the Guardianship Act does not seek to fetter a guardian in a way that is inconsistent with the ordinary law. A plenary order bestows on the guardian 'all the functions of a guardian of that person that a guardian has at law or in equity' (s 21(1)(b)). Accordingly, in my view, a specified function in a limited guardianship order should be interpreted in accordance with what is permitted by law or in equity in relation to the kind of conduct the subject of the specified function. The only difference between the rights enjoyed under the law as between an autonomous individual with capacity, and a guardian responsible for a person without capacity, is that the guardian must always act according to best interests considerations whereas the autonomous individual, in the exercise of free will, may make decisions which, objectively, appear to be against his or her best interests.
48 The higher courts in several jurisdictions in the last twenty years have dealt with the choices that may be made by appropriate persons in relation to the health care of patients who are unable to make their own decisions. It is now established that it is a permissible exercise of the 'parens patriae' jurisdiction that inheres in the superior courts to authorise care choices which may extend to the withdrawal of treatment under certain conditions: see Airedale NHS Trust v Bland [1993] AC 789 (HL), esp at 864 per Lord Goff of Chieveley, and at 894 per Mustill LJ; Northbridge v Central Sydney Area Health Service [2000] NSWSC 1241, esp at [24] per O'Keefe J; and Messiha v South East Health [2004] NSWSC 1061 (Howie J). See also, Gardner; re BWV [2003] VSC 173 (Morris J); Public Advocate v RCS (Guardianship) [2004] VCAT 1880 (Morris J, President); and Re Korp (Guardianship) [2005] VCAT 779 (Morris J, President).
49 It would, in my view, be a strange outcome if the order-making powers of the Guardianship Tribunal were to be read down, as compared to the powers available to the Supreme Court in the protective jurisdiction, so as to prevent guardians as substitute decision makers to be involved in the making of care decisions that have elements that involve the cessation of medical treatment. The Supreme Court's inherent protective jurisdiction and the Guardianship Tribunal's statutory jurisdiction are both seeking to serve the same end.
50 While it is the case that the Guardianship Tribunal must find its authority from its statute, in my view the Guardianship Act seeks to ensure that the 'functions' that may be invested in a guardian have the full plenitude of the law's understanding of the scope of a guardian's power to make substitute decisions. The only limit is that the functions must not be granted, and functions must not be performed in a way that infringes the boundaries set by common law and equity. Also, in the case of a limited guardianship order the functions must not be performed in a way that transgresses the terms of the order.
51 In my view, there is no obstacle in the Guardianship Act preventing a guardian from making health care decisions consistent with the principles that have been developed by the general law. In my view, the law today recognises that the guardian's functions can properly extend to the making of decisions in connection with health care that include decisions to withdraw life-sustaining treatment.
52 Where, as is the usual practice in this State, the guardian derives his or her powers from a limited guardianship order, a general reference to the right to make health care decisions as it was expressed in Guardianship Tribunal orders made prior to the decision is WK is, I consider, adequate to support decisions relating to the withdrawal of medical treatment. The difficulty, as I see it, that may flow from the inclusion of the second sentence specifically referring to this subject, as has been occurring since WK, is that, if it is not done universally, there may be arguments that the general power is to be read down.
53 My conclusion, therefore, is that a guardian invested with the authority to perform health care functions on behalf of a protected person is not prevented by the Guardianship Act or the general law from making decisions that involve the withdrawal of life-sustaining treatment, provided such decisions are made consistently with the principles articulated in the leading cases. The fundamental consideration is what is in the best interests of the protected person in the circumstances. That judgment is informed by having regard to whatever is known about the likely wishes of the protected person in the situation, reasonable medical opinion as to what is appropriate, and the views of the family (using the term 'family' in a generous sense to include best friends and the like).
54 When plans are being formulated, it will be necessary to distinguish between elements that attract the operation of Part 5 and those which are governed by the general principles. I agree with the submission that if a medical practitioner proposes not to treat a patient (having formed a clinical judgment that it is not appropriate to provide certain treatment), then no occasion arises for the operation of Part 5.
55 As well as the cases to which I have referred, the Guardianship Tribunal in its decision, Re Miss AG, notes that there is a wealth of authority in other jurisdictions belonging to the common law legal tradition to similar effect in relation to the authority of guardians in dealing with health care decisions in end of life circumstances. It refers to cases from the United States, Ireland, New Zealand and Canada. Many of those decisions deal at some length with the scope and meaning of palliative care, and the proper scope of advance care plans, and the principles applicable to the taking of substitute decisions for persons incapable of making decisions for themselves.
Disposition of this Application
56 FI expressed to the Tribunal her sense of frustration with the Public Guardian over, what she sees as, the unreasonable refusal of the Public Guardian to establish an advance care plan for her daughter. Her view is that the Tribunal should determine that plan, rather than remit the application for reconsideration to the Tribunal.
57 My view is that the Public Guardian's request is a reasonable one, and the Tribunal should accede to it.
58 It is preferable, in a sensitive matter of this kind, that the consultation that is part and parcel of decisions to establish advance care plans be undertaken in an environment of appropriate confidentiality and in a way that allows for discussion, and easy resolution of differences.
59 Moreover, the Public Guardian has staff who specialise in activity of this kind, and the Public Guardian is knowledgeable of who it is appropriate to consult in the medical community. The Public Guardian has an awareness of who it might be appropriate to consult within DFI's family and support circle. I note that in the filed material referring to the orders and deliberations of the Guardianship Tribunal that a number of people, her mother being of course a principal among them, have shown an interest in her welfare.
60 In my view, it is preferable to allow a process of this kind to proceed for a reasonable period, with a view then to calling the application back to the Tribunal for a progress report.
61 Finally, may I note that this decision is not to be read as involving a direction to the Public Guardian to enter into an advance care plan. This decision, to reiterate, only goes to the preliminary question raised, to do with what limits if any are imposed by guardianship law on elements within a plan that provide for the withdrawal of life-sustaining treatment.
Order
1. On the preliminary question, the answer is at para [53] of these reasons.
2. Pursuant to s 65 of the Administrative Decisions Tribunal Act 1997, the application is remitted to the Public Guardian for reconsideration of the decision made 11 February 2008.
3. The Public Guardian is to report back to the Tribunal in relation to the result of the reconsideration not later than 2 months after the date of this decision. Registrar to fix a mention date for that report.
4. Either party may apply, on three days' notice, for the application to be relisted ahead of the date fixed under order 3.