NSW Civil and Administrative Tribunal New South Wales Medium Neutral Citation: DKT [2018] NSWCATGD 52 Hearing dates: 8 June 2018 Date of orders: 8 June 2018 Decision date: 08 June 2018 Jurisdiction: Guardianship Division Before: R H Booby, Senior Member (Legal) Dr G Jamieson, Senior Member (Professional) L Porter, General Member (Community) Decision: 1. A guardianship order is made for DKT. 2. TAT, of [Address removed for publication.], is appointed as the guardian. 3. NBT, of [Address removed for publication.], is appointed as the alternative guardian. 4. This is a continuing guardianship order for a period of three years from 8 June 2018. 5. This is a limited guardianship order giving the guardian(s) custody of DKT to the extent necessary to carry out the functions below. FUNCTIONS: TAT 6. TAT has the following function: a) Health care To decide what health care DKT may receive. CONDITIONS: 7. The condition of this order is: a) Standard Condition In exercising this role the guardian shall take all reasonable steps to bring DKT to an understanding of the issues and to obtain and consider his views before making significant decisions. Catchwords: GUARDIANSHIP – application for a guardianship order – subject person with profound intellectual and physical disabilities – resident of FACS group home – palliative care plan – Withdrawal of Active Resuscitation order – previous orders signed by mother as person responsible – where CPR would be burdensome, intrusive and cause serious injury – new FACS policy on resuscitation plans – cardiopulmonary resuscitation mandated under policy unless guardian appointed to approve not for resuscitation order – consideration of common law principles concerning withholding of treatment – consideration of NSW Ministry of Health Directive on Using Resuscitation Plans in End of Life Decisions – finding that decisions relating to the withholding of treatment can be made under a health care function – appointment of private guardians – order made. Legislation Cited: Guardianship Act 1987 (NSW), ss 3(1)-(2), 3D, 3F(2)(d), 4, 14, 14(2), 14(2)(d), 17(1), 18(1)(a), 18(1B); Pt 5 Cases Cited: Application of Justice Health; Re a Patient [2011] NSWSC 432 C S and M Y v the Guardianship Tribunal and the Public Guardian (Supreme Court (NSW), Windeyer J, 29 November 1999, unrep FI v New South Wales Trustee and Guardian (No. 2) [2010] NSWADT 43 FI v Public Guardian [2008] NSWADT 263 IF v IG [2004] NSWADTAP 3 Re B [2011] NSWSC 1075 Texts Cited: NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions FACS Resuscitation Plans – Common Scenarios, March 2018 Category: Principal judgment Parties: 002: Guardianship Application DKT (the person) OZE (applicant) TAT (carer, proposed guardian) Department of Family and Community Services (joined party) Public Guardian Representation: Solicitors: V H Nguyen for Family and Community Services N Danis as separate representative for DKT File Number(s): NCAT 2010/00439086 Publication restriction: Decisions of the Guardianship Division of the Civil and Administrative Tribunal have been anonymised to remove any information that may identify any person involved in the Tribunal's proceedings: Civil and Administrative Tribunal Act 2013 (NSW), s 65. REASONS FOR DECISION Background 1. DKT lives in a group home at Inner West Sydney, operated by the Department of Family and Community Services (FACS). 2. DKT has been diagnosed with profound intellectual disability and requires a high-level of care and support. In addition to the diagnosis of intellectual disability he has been diagnosed with a hearing impairment, visual impairment, epilepsy, microcephaly, spasticity, severe, chronic kyphoscoliosis dysphagia, gastroesophageal reflux disease and osteoporosis. He also has severe contractures. 3. DKT is said to have no understanding of language but indicates pain, pleasure, anger and sadness by facial expressions. He requires a high-level of care and constant supervision. 4. A comment dated 28 July 2017 by Professor Z of the Endocrinology Department of a public hospital states that: "I think that in the overall context CPR should not be undertaken due to the significant risk of multiple rib fractures and associated severe pain and morbidity." 1. A comment dated 11 April 2018 by Dr Y, GP, states: "[DKT] is well known to me. I have been his GP for many years. He has profound and complex disabilities and is dependent for all his ADLS. His current health is poor due to persistent vomiting of unknown cause. I believe that active resuscitation is contra-indicated at least partly because of severe osteoporosis, but also due to his poor quality of life and poor prognosis." 1. A Health Care Plan for DKT updated on 23 February 2018 indicates that he is not to receive CPR. OZE confirmed that a Not For Resuscitation Order has been signed by DKT's mother. Guardianship Application 1. On 6 April 2018 the Tribunal received an application seeking the appointment of a guardian for DKT. The applicant was OZE, who is the Acting Residential Unit Nurse Manager at the group home in Inner West Sydney. 2. As a result of directions made by the Tribunal on 10 May 2018, copies of documents contained within a briefing pack disseminated by FACS on 19 March 2018 to management of all FACS operated services, including the group home in Inner West Sydney, were provided to the Tribunal and to each other party to these proceedings ("the FACS policy documents"). These documents confirm that in circumstances where a person does not have capacity and does not have a guardian, but a doctor has provided an opinion in advance that life sustaining treatment is not recommended, and relative(s) agree, nonetheless staff "must apply CPR" and are to call ambulance services [FACS Resuscitation Plans – Common Scenarios, March 2018, Scenario 5]. 3. FACs submitted that the new policy remedies an error that had been identified in the use of Not For Resuscitation Orders across NSW in FACS operated facilities where "person's responsible" were considered able to authorise such orders when they do not have the power to do so under Pt 5 of the Guardianship Act 1987 (NSW) ("the Act"). We understood from the oral submissions made on FACS's behalf that FACS base this on a 2008 decision of the then President of the Administrative Decisions Tribunal in the matter of FI v Public Guardian [2008] NSWADT 263 ("FI"). Issues for determination 1. It was not in dispute at the hearing on 8 June 2018 that DKT was a person for whom a guardianship order could be made given the evidence before us that due to the impact of his profound intellectual disability, he was unable to make, nor could he be supported to make, critical medical and health care decisions as to what should occur in a medical emergency. 2. Nor was it in dispute that if we decided to appoint a guardian for DKT that family members should be so appointed. There was also agreement between the parties that an initial appointment for the longest possible period under the Act should be made and that the orders should be reviewed at the end of that period. 3. The principal issue for determination was whether we should exercise our discretion under s 14(2) of the Act to make a guardianship order for DKT. As is set out in more detail below, this required us to have regard to the mandatory considerations set out in s 14(2) of the Act and also to apply the principles set out in s 4 of that Act. 4. In considering how we should exercise our discretion, we had regard to the FACS Policy Documents because they mandate the use of CPR in the circumstances set out above without regard to a person's individual circumstances. 5. The FACS Policy Documents also suggested in several places that another form of substitute decision-making was available other than by way of the appointment of a guardian for DKT in that the NSW Civil and Administrative Tribunal (NCAT) could itself make an order "that states that CPR is not to be administered" [FACS position on Resuscitation Plans, March 2018, Legal Position]. Whether or not there was a statutory basis for this assertion was directly relevant to the mandatory consideration in s 14(2)(d) of the Act that requires the Tribunal to consider whether it is practicable for services to be provided to a person without the need for the making of a guardianship order. Progress of guardianship hearing 1. At an interlocutory hearing convened on 17 May 2018 the Tribunal: 1. Ordered that DKT be separately represented in the hearing of the application(s); 2. Joined FACS as a party; 3. Granted leave for FACS to be legally represented by Viet Hoang Nguyen, who is an in-house lawyer within FACS Legal. 4. Directed that FACS was to give to the Tribunal and to all other parties the FACS Policy Documents which the legal representative for FACS described as follows: 1. The FACS position on resuscitation 2. Process for accepting resuscitation plans 3. Case scenarios 4. Acceptance criteria for resuscitation plans 5. Fact sheet for FACS staff seeking guardianship orders. DKT 1. DKT attended the hearing briefly. We were unable to seek his views about the matters being considered by the Tribunal but we were able to observe his interactions with his family and with staff members. We were also able to observe for ourselves some of the physical limitations that affect DKT and which are described in the written material before us as to his current state of health. 2. We were provided with the following written documents concerning DKT: 1. A Medical Review completed by Dr X on 21 October 2014. 2. A Health Assessment Tool for Adults With Intellectual Disability completed on 15 December 2017 which includes the comment referred to above by Professor Z. 3. An Annual Medical Review completed by Dr W, on 15 December 2017. 4. A Health Care Plan updated on 23 February 2018 noting that DKT is not to receive CPR and referencing the comment by Professor Z. 5. The note referred to above dated 11 April 2018 by Dr Y, who is DKT's GP. 1. On the basis of the information contained in this material, which was not in dispute, we were satisfied that DKT has a diagnosis of severe osteoporosis and could be painfully injured if CPR was performed, and that medical advice is to the effect that CPR should not be administered to him. GUARDIANSHIP APPLICATION What did the Tribunal have to decide? 1. The questions that had to be decided by the Tribunal were: 1. Is DKT someone for whom the Tribunal could make an order because he has a disability which prevents him from being able to make important life decisions? 2. Should the Tribunal make a guardianship order and if so, what order should be made? 3. Who should be the guardian? 4. How long should the order last? Is DKT someone for whom the Tribunal could make an order because he has a disability which prevents him from being able to make important life decisions? 1. Section 14 of the Act provides that the Tribunal may make a guardianship order for a person if it is satisfied that he is "a person in need of a guardian". A person in need of a guardian is "a person who because of a disability is totally or partially incapable of managing his or him/his person": the Act, s 3(1). A person with a disability is a person who is: 1. intellectually, physically, psychologically, or sensorily disabled; 2. of advanced age; 3. a mentally ill person within the meaning of the Mental Health Act 2007 (NSW)\; or 4. otherwise disabled; and by virtue of that fact is restricted in one or more major life activities to such an extent that he or he requires supervision or social habilitation: the Act, s 3(2). As previously noted, the Tribunal was provided with a number of written documents setting out the nature and extent of DKT's physical disabilities and profound intellectual disability. These confirm that DKT is entirely dependent on others to meet his daily care needs. There was agreement by all parties that this was the case. On the basis of the written and oral evidence, which we accept, we were satisfied that the extent of DKT's physical and intellectual disability result in him being restricted in all major life activities to such an extent that he requires supervision and assistance and is incapable of managing his own person. We were therefore satisfied that DKT is a person for whom we could make a guardianship order. Should the Tribunal make a guardianship order and what order should be made? 1. The Tribunal must consider all of the following matters set out in s 14(2) of the Act before exercising its discretion to make a guardianship order: 1. the views (if any) of: 1. the person, and 2. the person's spouse, and 3. the person's carer and 1. the importance of preserving the person's existing family relationships, and 2. the importance of preserving the person's particular cultural and linguistic environments, and 3. the practicability of services being provided to the person without the need for the making of such an order. 1. These matters have no hierarchy or weighting and each is a mandatory consideration. However, the Tribunal must undertake a balancing exercise for its consideration of the matters in s 14(2) of the Act. When undertaking this task, the Tribunal may be guided by the principles that are set out in s 4 of the Act (IF v IG [2004] NSWADTAP 3). 2. Section 4 of the Act provides as follows: 4 General principles It is the duty of everyone exercising functions under this Act with respect to persons who have disabilities to observe the following principles: (a) the welfare and interests of such persons should be given paramount consideration, (b) the freedom of decision and freedom of action of such persons should be restricted as little as possible, (c) such persons should be encouraged, as far as possible, to live a normal life in the community, (d) the views of such persons in relation to the exercise of those functions should be taken into consideration, (e) the importance of preserving the family relationships and the cultural and linguistic environments of such persons should be recognised, (f) such persons should be encouraged, as far as possible, to be self-reliant in matters relating to their personal, domestic and financial affairs, (g) such persons should be protected from neglect, abuse and exploitation, (h) the community should be encouraged to apply and promote these principles. Overview of evidence and submissions 1. TAT, who is DKT's mother, is regarded as DKT's carer under ss 3F(2)(d) and 3D of the Act. She has acted as his person responsible and under the regime set out in Pt 5 of the Act she is able to provide substitute consent for any minor or major medical treatment that DKT has required 2. OZE said that at the time of the hearing DKT was not in good health mainly due to persistent vomiting which was preventing him receiving adequate nutrition. She said that it has been agreed with his family members that CPR would cause him harm and as a result it has been agreed that this should not be administered to him. Evidence and submissions given on behalf of FACS 1. Mr Nguyen indicated that the FACS Performance Improvement section had recently undertaken a review of palliative care plans and Not For Resuscitation Orders held for residents of FACS supported accommodation across NSW. Advice was sought from FACS Legal and this led to the development and distribution of the new FACS Policy Documents issued in March 2018 by the FACS Deputy Secretary, Disability. 2. As confirmed in an email dated 19 March 2018, a copy of which was provided to us and the other parties, this material was sent to the Directors of a number of FACS operated services including the Director of the group home in Inner West Sydney. The email advised, relevantly, that: 1. The FACS position aligns with the "emergency action principle", that is, to render first-line emergency care in critical/emergency situations 2. FACS Legal have provided advice that if a person does not have capacity, only appointed enduring guardians or guardians appointed by NCAT or NCAT itself, have the authority to give direction to withhold life sustaining treatment. 3. NSW Health and NSW Ambulance have policy documents addressing the issue of the withholding of life sustaining treatment. However, such documents are to be applied by their respective staff only. These documents are not applicable to FACS staff as they appear not to meet the requirements set out by FACS Legal. 4. Based on FACS Legal advice, a clear and unambiguous instruction to FACS staff on the validity of Not For Resuscitation Orders is required. This is due to the current understanding and practice of staff and the potential legal risks associated in this area. Any instruction should ensure that FACS follows all legal requirements, and that frontline staff, including Nurses and Career Medical officers, adhere to their professional obligations. 5. As a matter of priority, Directors were asked to review all current documentation involving instructions around withholding CPR. The process of validating current plans (as valid or invalid) and the briefing of FACS group home staff was required to be completed by 20 April 2018. 1. Mr Nguyen said that it is the view of FACS that NSW Ministry of Health policies regarding resuscitation plans and end of life decisions do not apply outside of a hospital and have no application in facilities such as the Inner West Sydney group home. The Tribunal lacked evidence from others, such as representatives from the Ministry of Health that would establish that the situation was other than Mr Nguyen submitted. 2. In response to questions from the Tribunal, Mr Nguyen said that FACS accepts that a treating medical practitioner could form a view that future resuscitation efforts should not be made in respect of a patient, but that such a decision has effect only on the actions of that medical practitioner or persons immediately under the direction of that practitioner and cannot be used as the basis for decisions by FACS staff about the administration of life saving treatment. 3. It was noted that there were errors to in the FACS policy documents which will be corrected. They were: 1. Statements in the FACS Policy Documents and training material for staff that an NCAT appointed guardian with the function of making major medical decisions may authorise the making of a resuscitation plan that includes the withholding of resuscitation measures. Mr Nguyen for FACS acknowledged that this is incorrect as only a guardian given the function of making health care decisions may authorise such a plan (FI v Public Guardian [2008] NSWADT 263) 2. Statements in the documents that NCAT may make an order that CPR is not to be administered to a person. Counsel for FACS also acknowledged that there is no statutory basis for this assertion and it is incorrect (FI v Public Guardian [2008] NSWADT 263) Public Guardian's submission 1. The representative of the Office of the Public Guardian supported the application to make a guardianship order appointing a guardian with a health care function to make a "not for resuscitation plan" and order, so that DKT would not be subjected to unnecessary and invasive treatment Separate representative's submissions 1. Ms Danis supported the application to appoint a guardian to make decisions about withholding treatment for DKT on the basis that it is in his best interests that he not receive treatment that is injurious to him. She also supported making a guardianship order for the longest possible period as there was no utility in an earlier review of the order as DKT's condition is unlikely to improve. Reasoning 1. We decided to exercise our discretion to make a guardianship order for DKT for the following reasons. 1. As a result of the FACS Policy Documents introduced by FACS earlier this year, unless a guardian is appointed with appropriate authority, in the event that DKT goes into cardiac arrest the staff of the Inner West Sydney group home will have no choice but to apply CPR until DKT is in "the care and presence of a Doctor, including FACS Career Medical Officers, or a NSW Ambulance Officer and the Doctor or Ambulance Officer makes a clinical judgement that CPR would be futile" [FACS position on Resuscitation Plans March 2018]. 2. The undisputed evidence, which we accept, is that the use of CPR on DKT is likely to cause him significant injury due to his fragile physical condition as a result of his diagnosis of severe osteoporosis. It was also not challenged that DKT has a number of other physical conditions that limit his prognosis and affect the quality of his life. 3. FACS submitted that the requirement of the appointment of a guardian to approve DKT's Not For Resuscitation Order remedies an error that had been identified in the use of Not For Resuscitation Orders across NSW in FACS operated facilities where a "person's responsible", and not guardians, were authorising such orders. 1. The FI decision does not, however, mandate that in all cases involving a person without decision making capacity, a guardian must be appointed if decisions are to be made to withdraw life sustaining treatment. The decision (at [46]) acknowledges that: "the law recognises that clinical judgements 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 person'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] NSWSC 1241; (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]." 1. In subsequent proceedings involving the same matter (FI v New South Wales Trustee and Guardian (No. 2) [2010] NSWADT 43, [2]), it was noted that: [2] The decision in September 2008 dealt with the issue of the applicable law where the Public Guardian (now the New South Wales Trustee and Guardian) works within a statutory framework. The common law position was relatively clear. There was an argument about whether the common law position applied within the statutory framework. The essence of that ruling is that it did. 1. In a subsequent decision of the Supreme Court of NSW (Application of Justice Health; Re a Patient [2011] NSWSC 432 (Brereton J)), the same considerations that have been held to apply to the proposed "withdrawal" of treatment were applied in relation to the "withholding" of treatment ([6]-[8]). His Honour considered that subject to an issue not relevant to the current proceedings, in the circumstances of that case in which a declaration was sought that it was lawful for Justice Health to issue a "not for resuscitation order" in respect of a patient and where the unanimous medical opinion was that further active treatment would be futile, it was unnecessary for the application to be brought to the Court (at [8]). His Honour noted (at [7]): "It seems to me that it would be a rare case in which the Court would, by mandatory injunction, require a medical practitioner to render to a patient a particular form of medical treatment, which the practitioner genuinely and reasonably thought was not warranted or appropriate in the circumstances. It may be that there are some cases in which unanimity of medical opinion would be such that no other course of action than administering a particular form of treatment would be justifiable but this, at least, is not one of them." 1. These accepted legal principles would appear to form the basis of the approach taken at para 3.2.4 of the NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions in circumstances where there has not been sufficient time to hold discussions about resuscitation. As previously noted, it is expressly stated in the NSW Ministry of Health Policy Directive that not having a Resuscitation Plan does not necessarily mean that resuscitation is a default action that must be applied in all situations and that clinical judgment should be used where resuscitation is manifestly inappropriate and/or the patient is deceased. Further, the Policy Directive allows for Resuscitation Plans, even within the setting of a public hospital, to be valid for up to three months in certain circumstances (para 3.6) 1. FACS's position is that it is not bound by the NSW Ministry of Health Policy Directive. Whilst we accept that that is FACS's position, it was unclear from the evidence the extent to which any alternative approach other than the mandated application of CPR was considered in the development of the new policy approach having regard to the common law principles. 2. Mr Nguyen indicated that if, prior to a life-threatening event, a GP makes a decision that lifesaving treatment should not be performed, that decision is not applicable to the actions of FACS staff. There was no evidence as to the potential for involvement of FACS Career Medical Officers in decision making about resuscitation for residents of FACS operated services prior to the point at which a resident has a medical event leading to cardiac arrest and whether that decision could form a basis for decisions by FACS staff. This is despite that fact that the FACS Policy Documents clearly indicate that at the time of such a medical event, a FACS Career Medical Officer may make a decision that CPR may be ceased if they make a "clinical judgement that CPR would be futile" [FACS position on Resuscitation Plans March 2018]. 3. We decided that a guardianship order should be made for DKT so that a guardian is authorised to make critical decisions in advance as to what resuscitation efforts should be made if he has a cardiac arrest. Without such an appointment, the FACS policy requiring its staff to apply CPR will continue to be applied and on the basis of the evidence available to us and in DKT's particular circumstances, that would be burdensome and intrusive. 1. Accordingly, we decided that the guardian should be given authority to make health care decisions for DKT. This will allow the guardian to make decisions including the decisions relating to the withholding of treatment. 2. We did not include any other decision-making functions in the order. We are satisfied that TAT is regarded by all health care professionals in contact with her son as his person responsible under Pt 5 of the Act. This already provides her with legal authority to make all major medical treatment decisions for DKT. Who should be appointed? 1. The Tribunal must be satisfied that any person appointed as a private guardian meets the following requirements in accordance with s 17(1) of the Act. She or he must: 1. have a personality generally compatible with the personality of the person under guardianship; 2. have no undue conflict of interest (particularly financial) with those of the person; and 3. be able and willing to exercise the functions of the order. 1. In deciding whether a person is able to undertake the role of guardian, the Tribunal must consider whether the proposed guardian is able, having regard to the circumstances, to exercise the functions in accordance with the principles set out in s 4 of the Act (C S and M Y v the Guardianship Tribunal and the Public Guardian (Supreme Court (NSW), Windeyer J, 29 November 1999, unrep, and Re B [2011] NSWSC 1075, [66])). 2. OZE proposed that TAT be appointed respectively as DKT's guardian and that his brother, NBT be appointed as his alternative guardian. We were not advised of any conflict of interest that would impact on their appointment. 3. We were satisfied on the basis of their evidence and presentation at the hearing that TAT and NBT have a loving relationship with DKT, understand his circumstances are able to make decisions that take into account his circumstances and best interests. We were satisfied that they are ready and able to carry out the function of the guardianship order and we appointed TAT as the guardian, and NBT as the alternative guardian, for DKT. How long should the order last? 1. While an initial guardianship order can be made for a period of up to one year from the date on which it was made (s 18(1)(a) of the Act), an initial order can be made up to three years if the Tribunal is satisfied that: 1. the person the subject of the order has permanent disabilities, and 2. it is unlikely that the person will become capable of managing his or him/his person, and 3. there is a need for an order of longer duration than the relevant period specified in sub-s (1) (s 18(1B) of the Act). 1. We decided to make a guardianship order for three years on the basis that each of the requirements of s 18(1B) of the Act were satisfied. DKT has permanent disabilities and, due to his profound intellectual disability, will never become capable of managing his person. The evidence before us indicated that medical reviews take place on a yearly basis. Decision making about these issues will therefore be required on an ongoing basis necessitating the need for an order of longer duration than one year. We therefore made the order for the available maximum period of three years. ********** I hereby certify that this is a true and accurate record of the reasons for decision of the Civil and Administrative Tribunal of New South Wales. Registrar DISCLAIMER - Every effort has been made to comply with suppression orders or statutory provisions prohibiting publication that may apply to this judgment or decision. The onus remains on any person using material in the judgment or decision to ensure that the intended use of that material does not breach any such order or provision. Further enquiries may be directed to the Registry of the Court or Tribunal in which it was generated. Decision last updated: 26 September 2022