NSW Civil and Administrative Tribunal New South Wales Medium Neutral Citation: HAE [2018] NSWCATGD 10 Hearing dates: 23 May 2018 Date of orders: 30 May 2018 Decision date: 30 May 2018 Jurisdiction: Guardianship Division Before: C P Fougere, Principal Member Dr A M Berry, Senior Member (Professional) Emeritus Professor P J Foreman, General Member (Community) Decision: 003: Guardianship Application 1. A guardianship order is made for Ms HAE. 2. Mr DYE is appointed as the guardian. 3. Mrs DYE is appointed as the alternative guardian. 4. This is a continuing guardianship order for a period of three years from 30 May 2018. 5. This is a limited guardianship order giving the guardian(s) custody of Ms HAE to the extent necessary to carry out the functions below. FUNCTIONS: Mr DYE 6. Mr DYE has the following function: a) Health care To decide what health care Ms HAE may receive. CONDITION: 7. The condition of this order is: a) Standard Condition In exercising this role the guardian shall take all reasonable steps to bring Ms HAE to an understanding of the issues and to obtain and consider her views before making significant decisions. 005: Financial Management Application The hearing of the application for a financial management order is adjourned to a date to be fixed by the Registrar. Catchwords: GUARDIANSHIP – application for guardianship order – woman with profound intellectual and physical disabilities – resident of FACS group home – palliative care plan – Withdrawal of Active Resuscitation order – previous orders signed by father as person responsible in consultation with medical practitioners – 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 Legislation Cited: Civil and Administrative Tribunal Act 2013 s 36(1) Guardianship Act 1987 (NSW) ss 3F(2)(d), 3D, 3(1), 3(2), 4, 14(2), 14(2)(d), 17(1), 18(1), 18(1)(a), 18(1B), Part 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 Public Guardian [2008] NSWADT 263 FI v New South Wales Trustee and Guardian (No. 2) [2010] NSWADT 43 Hunter Area Health Service v Marchlewski (2000) 51 NSWLR 264 Messiha v South East Health [2004] NSWSC 1061 National Health Service; Auckland Area Health Board v Attorney General [1993] 1 NZLR 235 Northbridge v Central Sydney Area Health Service [2000] NSWSC 1241; (2000) 50 NSWLR 549 Re B [2011] NSWSC 1075 Re G [1997] 2 NZLR 201 Texts Cited: Family and Community Services ADHC, End of Life Care Planning Guidelines (Version 1.0, Family and Community Services ADHC, January 2016) Family and Community Services ADHC, Decision Making and Consent Guidelines (Version 1.0, Family and Community Services ADHC, January 2016) NSW Ministry of Health Directive on Using Resuscitation Plans in End of Life Decisions (PD2014_030, NSW Ministry of Health, 8 September 2014) NSW Ministry of Health, Advance Planning for Quality Care at End of Life: Action Plan 2013-2018 (NSW Ministry of Health, 2013) Category: Principal judgment Parties: 003: Guardianship Application Ms HAE (subject person) Ms PZG (applicant) Mr DYE (father and carer) Mrs DYE (mother and carer) Department of Family and Community Services (FACS) (joined as a party on 10 May 2018) The Public Guardian 005: Financial Management Application Ms HAE (subject person) Mr DYE (father, applicant, and carer) Mrs DYE (mother and carer) The NSW Trustee and Guardian Representation: M Falloon (separate representative for Ms HAE) K Madgwick, Barrister (Counsel for FACS) V H Nguyen, FACS Legal (Solicitor for FACS) File Number(s): NCAT 2010/00439088 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 (s 65, Civil and Administrative Tribunal Act 2013 (NSW)). REASONS FOR DECISION 1. On 23 May 2018, we adjourned to a date to be fixed by the Registrar the hearing of the application made by Mr DYE for the appointment of a financial management order for his daughter, Ms HAE. 2. On the same date, we reserved our decision in respect of the application made by Ms PZG for the appointment of a guardian for Ms HAE pending receipt of final written submissions from the Public Guardian by 25 May 2018. 3. On 30 May 2018, we made a guardianship order for Ms HAE for three years appointing Mr DYE as her guardian and her mother, Mrs DYE, as her alternative guardian with the function of health care. This order will be reviewed in three years. 4. These are our reasons for the orders made. Background 1. The following evidence was not in dispute. 2. Ms HAE is a 44-year-old woman who lives in a Sydney group home, operated by the Department of Family and Community Services (FACS). 3. The evidence before us was that Ms HAE is the eldest daughter of Mr DYE and Mrs DYE. Ms HAE has four sisters with whom she is also close. 4. Ms HAE has lived for approximately 40 years in the Sydney group home. She has been diagnosed with profound intellectual disability and requires a high-level of care and support as a result of a number of physical disabilities that she has had since birth including cerebral palsy, spastic quadriplegia, left-sided hemiplegia, epilepsy, microcephaly and scoliosis. Ms HAE is non-verbal but we were told can communicate her emotions with her family members and those staff at the group home with whom she is close and who know her well. 5. Since 2009, a Palliative Care Plan has been in place for Ms HAE and has been reviewed and renewed each year since. The evidence indicates that, in summary, the reason for the development of a Palliative Care Plan for Ms HAE relates to her recurrent chest infections, declining respiratory function and poor prognosis as a result. Each plan has been developed with close consultation between her parents, Ms HAE's long standing general practitioner, Dr X, and other health care professionals. Each Palliative Care Plan since 2009 had been signed by Mr DYE, as his daughter's person responsible, and Dr X. The content of each Plan has been implemented by staff at the Sydney group home. 6. We were given a copy of the most recent Palliative Care Plan which was signed by Mr DYE and Dr X on 23 March 2018. The Plan is made up of the following three components: 1. That in the event of deterioration in her health, Ms HAE's family, in consultation with Dr X, are the primary decision makers regarding her ongoing care including decisions about whether Ms HAE's health is to be managed at the Sydney group home or whether she should be transported to hospital; 2. Ms HAE will have access to "crisis" medications (morphine for respiratory distress, haloperidol for agitated distress, and hyoscine for secretions); 3. A "Withdrawal of Active Resuscitation Order" (the "Order"). This document, on FACS letterhead, commences with the following: "Where a decision is made and agreed with the Person Responsible that Cardio Pulmonary Resuscitation (CPR) is not appropriate in the event of a client's cessation of breathing and circulation, the order is to be documented by the treating medical officer. 1. The details of the Order as they specifically relate to Ms HAE are written in handwriting and are as follows: "No CPR no use of defibrillator as per palliative care plan." 1. The standard part of the Order concludes with: "The Person Responsible can withdraw consent to this Order at any time, either verbally or in writing. This Order is valid for a period of 12 months, unless consent is withdrawn earlier by any party." 1. The Order is signed by Dr X, as the treating medical officer, and Mr DYE, as person responsible, on 27 April 2017. 1. The Palliative Care Plan forms part of the Health Care Plan for Ms HAE that is also reviewed on an annual basis in consultation with Dr X, other medical specialists, staff of the group home, and Ms HAE's parents. 2. We were provided with the Health Care Plan that was last reviewed on 20 December 2017. This document has attached to it Ms HAE's Palliative Care Plan but also alerts readers early in the document that no cardio pulmonary resuscitation ("CPR") is to be performed due to Ms HAE's "osteoporosis, brittle bones and current palliative care plan". Guardianship application 1. On 6 April 2018, approximately two weeks following the finalisation of Ms HAE's most recent Palliative Care Plan, the Tribunal received an application to have a guardian appointed for Ms HAE. The applicant is Ms PZG who is an employee of FACS and is the Acting Residential Unit Nurse Manager of that part of the Sydney group home within which Ms HAE lives. The application was made on the following basis: FACS provided advice on 3rd April 2018 that resuscitation orders must be signed by both GP and a guardian (sic); and that plans signed by persons responsible were not valid. This advice is effective immediately. Should [Ms HAE] pass away before a guardian is appointed and able to sign the Withdrawal of Active Resuscitation Order, she will need to be resuscitated against the wishes of her family/person responsible and advice of GP and specialists. 1. The application goes on to state that: It is the wish of [Ms HAE's] family that she be able to pass away peacefully, with dignity. They do not want her to be resuscitated. She has fluctuating health and if this order is not put in place quickly, she is at risk of being put through medically invalid and futile intervention. 1. 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 Sydney group home, were provided to the Tribunal and to each other party to these proceedings (FACS policy documents). These documents indeed confirm that in circumstances where a person does not have capacity such as Ms HAE, where the person does not have an appointed (or enduring) guardian and a doctor has provided an opinion in advance that life sustaining treatment is not recommended and relative(s) agree, staff "must apply CPR" and are to call ambulance services [FACS Resuscitation Plans – Common Scenarios, March 2018, Scenario 5]. 2. FACs submitted that the new policy remedies an error that had been identified in the use of Not For Resuscitation Orders in FACS operated facilities where "persons responsible" were authorising such orders when they did not have the authority to do so under Part 5 of the Guardianship Act 1987 (NSW). We understood from the oral submissions made by Counsel on FACS's behalf that FACS base this on a 2008 decision of the President of the then 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 23 May 2018 that Ms HAE was a person for whom a guardianship order could be made given the evidence before us that due to the impact of her profound intellectual disability, Ms HAE was unable to make, nor could she be supported to make, critical medical and health care decisions as to what should occur in a medical emergency such as that contemplated by her Palliative Care Plan. 2. Nor was it in dispute that if we decided to appoint a guardian or guardians for Ms HAE, that her parents should be so appointed. There was also agreement between the parties that an initial appointment for the longest possible period under the Guardianship Act 1987 (NSW) (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 or not we should exercise our discretion under s 14(2) of the Act to make a guardianship order for Ms HAE. 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 under s 14(2), we considered the FACS Policy Documents given that the new policy mandates the use of CPR in the circumstances set out above without regard to Ms HAE's individual circumstances. 5. The FACS Policy Documents also suggest in a number of places that another form of substitute decision-making was available other than by way of the appointment of a guardian for Ms HAE, namely 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. Adjournment of financial management application 1. The Tribunal also received an application from Mr DYE for the appointment of a financial manager for his daughter. Due to time constraints we did not commence the hearing of this application and, with the consent of the parties, adjourned the hearing to a date to be fixed by the Registrar. Progress of guardianship hearing 1. At an interlocutory hearing convened on 10 May 2018 in relation to the guardianship application only, directions were made including the appointment of a separate representative for Ms HAE. Ms Mary Falloon, Counsel, appeared in this role at the hearing on 23 May 2018. 2. At the same interlocutory hearing, FACS was joined as a party and leave was granted for FACS to be legally represented by Viet Hoang Nguyen, who is an in-house lawyer within FACS Legal. 3. At the hearing on 23 May 2018, FACS also sought leave to be represented by Ms Kate Madgwick, Counsel. The Tribunal was satisfied that it was appropriate to grant the leave sought. There was no objection from any other party or the separate representative and in our view, other parties would not be disadvantaged by FACS being legally represented by Counsel. We were also of the view that the participation of Counsel on behalf of FACS was likely to assist in facilitating the "just, quick and cheap resolution of the real issues in the proceedings" (Civil and Administrative Tribunal Act 2013 (NSW) s 36(1)). 4. Also on 10 May 2018, the Tribunal 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. 1. Following receipt of this material, on 16 May 2018 the Tribunal issued further directions as follows: …in order to assist in the determination of the application for guardianship for Ms HAE, with particular reference to the principles and matters the Tribunal must have regard to pursuant to s 4, s 14 and Part 5 of the Guardianship Act, and in view of the decision in FI v Public Guardian [2008] NSWADT 263, the Department of Family and Community Services is advised that at the hearing on 23 May 2018, it will be asked to address the following matters: The legislative or other basis for statements in the material [listed in the previous paragraph] that the appointment by NCAT of a guardian with the function to make major medical decisions may authorise a resuscitation plan that includes the withholding of resuscitation measures (rather than a guardian with the function to make health care decisions); The legislative basis for statements in the material [listed in the previous paragraph] that NCAT may make an order that cardiopulmonary resuscitation not be administered to a person to whom the Guardianship Act 1987 applies; Given that the decision in FI v Public Guardian [2008] NSWADT 263 was made in 2008, what has prompted the application for the appointment of a guardian for Ms HAE in 201[8]?; Is any other form of decision making concerning the giving or withholding of resuscitation measures in relation to Ms HAE currently available as was suggested at the directions hearing on 10 May 2018, for example, by Registered Nurses who are available at Ms HAE's group home 24 hours a day? 1. These matters were addressed at the hearing on 23 May 2018 by Counsel in submissions and in evidence by Ms RVD, Executive Director, Disability Operations North, FACS. 2. At the hearing on 23 May 2018, the following additional material was handed up by FACS: 1. Document entitled "End of Life Care Planning Guidelines", issued by FACS, approval date January 2016, Version 1.0 ("FACS End of Life Planning Guidelines") (https://www.adhc.nsw.gov.au/__data/assets/pdf_file/0006/382659/End_of_Life_Care_Planning_Guidelines.pdf) 2. Policy Directive PD2014_030 entitled "Using Resuscitation Plans in End of Life Decisions", issued by Ministry of Health NSW, Publication date 8 September 2014 ("NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions") (http://www1.health.nsw.gov.au/pds/ActivePDSDocuments/PD2014_030.pdf) 1. As this material was handed up at the hearing, and the Public Guardian was participating by telephone without ready access to the material during the course of the hearing, at the Public Guardian's request we reserved our decision at the conclusion of the hearing with a direction that the Public Guardian was to provide by close of business 25 May 2018 any final written submissions. 2. A final submission was made by the Public Guardian within this timeframe and was served on each of the other parties and separate representative. 3. Our decision in relation to the guardianship application was made on 30 May 2018. Ms HAE 1. We had the opportunity to meet Ms HAE during the hearing on 28 May 2018. She was brought to the hearing room in her wheelchair by her sister. Whilst we were unable to seek Ms HAE's views about the matters being considered by the Tribunal, we were able to observe her clearly close relationship with her sister and parents. 2. We were also able to observe for ourselves some of the physical limitations that affect Ms HAE and which are described in the written material before us as to Ms HAE's current state of health. 3. We were provided with the following written documents concerning Ms HAE: 1. Health Assessment Tool for Adults with Intellectual Disability dated 10 January 2018; 2. Medical review, undated (other than a reference to attendance on 24 October but may be presumed to have been written in 2014 from Ms HAE's stated age and inclusion of finding from blood tests in January 2014) by Dr Y, Developmental Disability Physician; 3. Medical, Dental and Allied Health Record maintained by the Sydney Group Home, 1 January 2002–21 March 2018; 4. Health Care Plan, last reviewed 20 December 2017; 5. Palliative Care Plan, signed by Mr DYE and Dr X on 23 March 2018. 1. On the basis of the information contained in this material, which was not in dispute, we accepted the following matters as relevant facts established to the requisite civil standard. 2. Ms HAE has a long-term diagnosis of osteoporosis. She receives prolia injections on a six-monthly basis which is a treatment for osteoporosis where there is a high risk of bone fracture. 3. The Health Care Plan states that Ms HAE has a left sided hemi paresis and her "hips, knees, spine, wrists, elbows, and shoulders are particularly affected". Great care must be taken by group home staff with any activity involving her joints such as dressing or transfers and staff are instructed that "any extensions must be done slowly and with care to prevent fracture, muscle tears and/or pain" (Heath Care Plan, reviewed 20 December 2017). 4. One of the most significant health issues facing Ms HAE relates to her respiratory function. She has a lifetime history of oropharyngeal dysphagia, aspiration, chest infections, aspiration pneumonia, multiple hospitalisations, and lung collapse. Ms HAE is described as having had a "slow, progressive reduction in lung function with increased reliance on oxygen". 5. Ms HAE has a severe right lateral curvature of the spine which means that her spine looks like a 'C'. Her right ribcage, and as a consequence right lung, is compromised and cannot expand properly. She has an ineffective cough with the result that the ability to cough up phlegm is much reduced. Ms HAE has dysphagia which increases her propensity for aspiration pneumonia. Due to this condition and recurrent chest infections, since 1998 Ms HAE has received all nutrition by way of a percutaneous endoscopic gastrostomy (PEG) feeding tube. 6. Ms HAE has bronchiectasis, a chronic lung condition that was diagnosed in 1998. This involves damage, scarring, and dilation of Ms HAE's lungs and predisposes her to recurrent chest infections as the disease allows infected mucus to build up in pockets. The condition is managed with regular respiratory physiotherapy, asthma medications, humidification, and antibiotics as required. Mr DYE told us that his daughter's physiotherapy sessions have increased from five to six days per week to seven days per week to manage this condition. Suctioning is also undertaken many times each day. Ms HAE has required almost continuous oxygen therapy since the start of 2010, currently at 4L-6L which can increase up to 12L for a short time when she is unwell. 7. The medical, dental, and allied health records concerning Ms HAE dating from 2002, document that Ms HAE has had numerous hospitalisations since that date with pneumonia and has had recurrent chest infections. 8. The Health Care Plan (last reviewed on 20 December 2017) confirms that the palliative goal for Ms HAE "remains to keep Ms HAE comfortable and her O2 saturation above 90%". 9. The Health Care Plan also confirms that apart from her general practitioner, Ms HAE is reviewed on a regular basis by a number of doctors at a Sydney Hospital including Professor W (Respiratory Medicine), Professor V (Gastroenterology), and Dr U (Neurology). The Plan also lists Dr T and Ms S (CNC) as the medical specialists in the area of Palliative Care. GUARDIANSHIP APPLICATION What did the Tribunal have to decide? 1. The questions that had to be decided by the Tribunal were: * Is Ms HAE someone for whom the Tribunal could make an order because she has a disability which prevents her from being able to make important life decisions? * Should the Tribunal make a guardianship order and if so, what order should be made? * Who should be the guardian? * How long should the order last? Is Ms HAE someone for whom the Tribunal could make an order because she has a disability which prevents her 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 she 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 her person" (s 3(1) of the Act). 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; 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 she requires supervision or social habilitation (s 3(2) of the Act). 1. As previously noted, the Tribunal was provided with a number of written documents setting out the nature and extent of Ms HAE's physical disabilities and profound intellectual disability. These confirm that Ms HAE is entirely dependent on others to meet her daily care needs and there was agreement by all parties that this was the case. 2. On the basis of the written and oral evidence, which we accept, we were satisfied that the extent of Ms HAE's physical and intellectual disability result in her being restricted in all major life activities to such an extent that she requires supervision and assistance and is thereby incapable of managing her own person. We were therefore satisfied that a guardianship order could be made for Ms HAE. 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 s follows: 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 Mr and Mrs DYE 1. Mr and Mrs DYE are regarded as their daughter's carers under ss 3F(2)(d) and 3D of the Act. They have both acted as their daughter's person responsible and are therefore able to provide substitute consent for any minor or major medical treatment that Ms HAE has required under the regime set out in Part 5 of the Act. The evidence indicates that Mr and Mrs DYE have never experienced any difficulties or impediments in having this important role in their daughter's life recognised by health professionals or care providers. As previously noted, Mr DYE's authority as person responsible has, until April this year, been recognised by FACS as providing the necessary authority, along with that of Dr X, to authorise the Withdrawal of Active Resuscitation Orders that have been in place for Ms HAE since 2009. 2. Mr and Mrs DYE both described their distress at being informed in early-April 2018 that the Withdrawal of Active Resuscitation Order for their daughter was no longer valid and that until a guardian is appointed with the authority to give consent to that Order, in the event of Ms HAE having a cardiac arrest, staff of the Sydney group home would have no choice but to perform CPR. 3. In describing the circumstances that led to the decision to enter into a Palliative Care Plan in 2009, in written evidence Mr and Mrs DYE noted that "the many trips to hospital, while managing the medical event, caused a great deal of stress and resulted in a substantial disruption to Ms HAE' care. Normal hospital staff are ill equipped in managing a patient such as Ms HAE. This decision [to enter into a Palliative Care Plan] was made in consultation with staff at the Sydney group home and her doctors. It was not made lightly and is reviewed regularly". 4. Mr DYE described his daughter as being medically frail due to her respiratory difficulties and the fragility of her bones. 5. Mr DYE believes the use of CPR on his daughter, because of her poor bone density, would be "painful and unnecessary". Her parents wish for their daughter to have a dignified death when the time comes. 6. Both Mr and Mrs DYE told us that they are looking for a sensible approach as a result of the change in FACS policy and if that means that a guardian needs to be appointed for their daughter, then they wish to be appointed in that role. Evidence and submissions given on behalf of FACS 1. Ms RVD gave evidence that the FACS End of Life Care Planning Guidelines (approved in 2016) (the Guidelines) remain current. 2. Our attention was drawn to the specific reference to resuscitation plans (at para 5.7) as follows: Resuscitation Plans are considered when a person moves away from aggressive medical intervention towards a palliative approach to care. A Resuscitation Plan is a medically and legally enforceable authorised order. It nominates when to use or withhold resuscitation measures, and documents other time critical clinical decisions related to end of life. Resuscitation Plans must be followed by all care staff. The Resuscitation Plan was formerly known as a No CPR Order. A Resuscitation Plan: � refers to the person's pre-planning (such as End of Life Care Plans or Advance Care Plans or Directives) � is made in consultation with the person and family � takes into account the person's current clinical status, as well as the wishes and goals of the person � can only be developed by the treating medical officer in consultation with the person and their family. Other health care professionals (including nurses) cannot be delegated the task of informing people or obtaining consent for resuscitation planning. NSW Health Resuscitation Plans are valid for use by NSW Ambulance staff in all situations involving patient contact. A hard copy of the Resuscitation Plan should be kept at the front of the person's health care record (see Other Resources 4 – Resuscitation Plans in End of Life Decisions – NSW Health). 1. This aspect of the Guidelines appears to contemplate the approach to be taken when a person has the capacity to engage in the decision-making process. There is no specific reference in the document to circumstances in which the person concerned is unable to engage in the decision-making process about resuscitation. General reference is made in para 5.1 to the potential need for a guardian to be appointed if a person has been unable to make a decision even with support, and the reader is referred to another FACS policy document (FACS Decision Making and Consent Guidelines, Approval date January 2016, Version 1.0). However, that document does not appear to address the issue of resuscitation plans and the role of persons responsible or guardians. 2. According to Ms RVD's evidence, another section of FACS (Performance Improvement) recently undertook a review of palliative care plans and Not For Resuscitation Orders held for residents of FACS supported accommodation across NSW. Advice was sought from the FACS legal department (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. 3. 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 Sydney group home. The email advised, relevantly, that: * The FACS position aligns with the "emergency action principle", that is, to render first-line emergency care in critical/emergency situations * 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" * 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" * "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 be constructed to ensure that FACS follows all legal requirements, and that frontline staff, including Nurses and Career Medical officers, can adhere to their professional obligations". * Directors were asked to review all current documentation that may involve instructions around withholding CPR as a matter of priority. The process of validating current plans (as valid or invalid) and the briefing of FACS group home staff was required to be completed on 20 April 2018. NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions 1. As previously noted, on the day of the hearing FACS also gave to us and the other parties a copy of the NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions. This documents sets out (at para 1.1) the purpose of the document describing the standards and principles relating "to appropriate use of Resuscitation Plans by NSW Public Health Organisations for patients 29 days and older. A Resuscitation Plan is a medically authorised order to use or withhold resuscitation measures and which documents other aspects of treatment relevant at end of life". 2. It notes (at para 1.3) that the "existing legal framework in NSW supports end of life decisions, including Resuscitation Plans and permits…Decisions made by a doctor, in consultation with and preferably agreement of the person responsible, where a person has no decision-making capacity to withhold or withdraw life-sustaining measures so as to focus primarily on palliative care (Advance Planning for Quality Care at End of Life: Action Plan 2013-2018)". 3. It sets out (at para 2.2) the rationales for not instituting CPR including the following: 2.2.2 Where the person has no capacity to make this decision, there is an adequately informed and properly documented decision to withhold resuscitation by the Attending Medical Officer in consultation with the Person Responsible. • This should be based on any known previous refusal of resuscitation or, in the absence of such refusal, a decision that resuscitation would not be in the patient's best interests. The Attending Medical Officer must also document a reason for overriding a documented decision such as an Advance Care Directive, for example that it does not adequately apply to the clinical situation at hand; or 2.2.3 Where the Attending Medical Officer judges that resuscitation offers no benefit or where the benefits are small and overwhelmed by the burden to the patient. Given that judgments about the benefits or otherwise of a therapy ultimately reflect the values, beliefs and hopes/goals of the patient, any decision to withhold resuscitation on clinical grounds alone must be carefully considered, properly justified and documented Focussing on patient comfort also entails withholding life-sustaining measures sometimes considered to be of negligible benefit (for example, where the ability to restore spontaneous rhythm or circulation with CPR is highly unlikely) A medical practitioner does not need to obtain agreement from the patient or family to withhold interventions considered to be of negligible benefit, but it is still good clinical practice to discuss why these are not being offered in the context of broader end of life goals of care conversation. This includes scenarios that may present at an Emergency Department. If consent is not sought, the reasons why should be documented in the patient record. It is also the case that engaging patients in such discussion does not obligate the treating team to provide treatments that they believe are considered to be of negligible benefit. 1. Issues concerning patients who do not have decision making capacity in expressly addressed as follows: 3.2 Capacity and participation Doctors prescribing medical orders, including 'Resuscitation Plans', hold responsibility for reaching those decisions, in consultation with patients. Where the patient does not have decision-making capacity, a consensus building approach to end-of-life decision-making that considers the patient's best interests as paramount is recommended. The patient, Person Responsible and/or family should be informed about the nature of CPR; the likely effects of resuscitation, including CPR, in this particular circumstance; and its' possible adverse outcomes e.g. broken ribs; and the consequences of not instituting CPR. These should be discussed in the context of broader goals of care applicable at that time. As part of such discussions it may be helpful to seek advice from other health professionals who may have been involved in the care of the patient and had conversations about end of life care, such as the patient's General Practitioner. The Attending Medical Officer should recommend a course of action when discussing resuscitation in the context of goals of care with the patient, Person Responsible or family. … 3.2.3 Where the patient does not have decision making capacity … Where the patient lacks decision-making capacity, the Attending Medical Officer or their delegate should identify the Enduring Guardian (or other category of Person Responsible). Enduring Guardians can refuse life sustaining measures if they have been expressly given such a power in their appointment 1. Significantly, in our view, para 3.2.4 sets out the approach where the person's wishes regarding resuscitation are unknown as follows: 3.2.4 Where the person's wishes regarding resuscitation are unknown Cardiorespiratory arrest may occur before there has been sufficient time to hold discussions regarding resuscitation. Health professionals still need to decide about use of resuscitation without knowing the person's wishes in some circumstances. This is addressed in PD2005_406 Consent to Medical Treatment - Patient Information in providing medical treatment in emergency situations. Not having a Resuscitation Plan does not necessarily mean that resuscitation is a default action that must be applied in all situations. Clinical judgement should be used where resuscitation is manifestly inappropriate and/or the patient is deceased. (emphasis added) 1. A Resuscitation Plan may be valid for up to three months for frequent and routine admissions, for example, renal dialysis (para 3.6). 2. Counsel for FACS focussed our attention on para 1.2 of the NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions to support FACS' view that that Policy Directive had no application to FACS operated services: 1.2 Mandatory Requirements All Public Health Organisations must adopt the NSW Health Resuscitation Plans (adult and paediatric). Resuscitation Plans are intended for use in all NSW Public Health Organisations, including acute facilities, sub-acute facilities, ambulatory and community settings, and NSW Ambulance for patients 29 days and older. NSW Health Resuscitation Plans are not valid for community patients under the medical care of a doctor that is not a NSW Health staff member. General Practitioners with admitting rights are considered NSW Health staff. 1. There seemed to us potential ambiguity arising from the wording of the second paragraph of 1.2 in its application to someone in Ms HAE's situation and whether or not she might for some purposes be regarded as a "community patient", given, as previously noted, the number of doctors from the Sydney Hospital who are involved in her care and the palliative care specialists listed in her Health Care Plan. 2. However, in the absence of a definition of "community patient" in the Directive and without a representative from NSW Health to advise as to the people encompassed within this term, we accepted the submission made by Counsel for FACS that FACS is unequivocal in its view that the NSW Ministry of Health Policy Directive on Using Resuscitation Plans in End of Life Decisions has no application to FACS and thereby has no application to the residents of the accommodation services that it provides including Ms HAE. 3. Despite this, evidence was given by Ms R, Nurse Manager, the Sydney group home, that at a team meeting for all staff approximately three weeks prior to this hearing, staff were advised by the Director of Services A and the Sydney group home, that Registered Nurses (of which two are on duty at the Sydney group home, 24 hours per day) could make a clinical decision that resuscitation should not be administered to Ms HAE if she stops breathing if the Registered Nurse on duty formed the view that it would be futile to do so, would not be in Ms HAE's best interests, or would cause Ms HAE untoward injury. 4. Ms RVD gave evidence that this was not FACS's position and appears to have resulted from a misunderstanding. Ms RVD confirmed in her evidence that the emergency action principle applies in all FACS settings unless a valid Not For Resuscitation order is in place. 5. In response to matters raised in the directions made on 16 May 2018, Counsel for FACS acknowledged that legal errors were made in the FACS Policy Documents and that FACS would, as a result, be amending this material on an urgent basis. The errors to be corrected are as follows: * 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. Counsel 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) * Statements in the documents that NCAT may make an order that CPR is not to be administered to a person. Counsel for FACS acknowledged that there is no statutory basis for this assertion and is incorrect Public Guardian's submission 1. In a written submission dated 25 May 2018, Ms Kim Batton, A/Principal Guardian submitted that: The Public Guardian acknowledges the barriers that Mr and Mrs [DYE] have recently faced in being able to continue to informally support [Ms HAE] with important decisions about her life, this includes FACS confirming their position regarding Resuscitation Plans. To avoid any unclear strategies for staff supporting [Ms HAE] and to ensure that futile treatment is not initiated (in line with her doctor's professional recommendation and her parents' wishes) it would be in [Ms HAE's] best interests to have a legally appointed guardian. The Public Guardian acknowledges that [Ms HAE's] Resuscitation Plan is not currently accepted by her care provider and in the event of a critical medical situation, care staff may be required to initiate CPR, causing [Ms HAE] to be subject to intrusive measures which could be futile, burdensome, distressing and likely to cause her injury. 1. Ms Batton, on behalf of the Public Guardian, recommended the making of a guardianship order with a health care function and with Mr and Mrs DYE appointed as the guardians. Ms Batton also recommended the making of a three-year reviewable order. Separate representative's submissions 1. The separate representative's submissions focussed on the principle set out in s 4 of the Act that Ms HAE's welfare and interest must be given paramount consideration. After noting evidence that the management of the Sydney group home will at some future time be transferred to a new organisation (as yet unknown) and the seemingly complex set of policies that apply, or could apply, to Ms HAE, it was in Ms HAE's interests to appoint guardians for her and these guardians should be her parents. This will provide certainty about decision making for Ms HAE in relation to the policy currently applied by FACS as well as in relation to any policies relating to resuscitation applied by a future care provider. 2. The separate representative also referred to the confusion and distress experienced by Ms HAE's parents as a result of the events leading to this hearing. She noted their devotion to Ms HAE and their need for certainty so that they can continue to make decisions for their much loved daughter. Reasoning 1. We decided to exercise our discretion to make a guardianship order for Ms HAE for the following reasons. 2. 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 Ms HAE goes into cardiac arrest the staff of the Sydney group home will have no choice but to apply CPR until Ms HAE 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]. 3. The undisputed evidence, which we accept, is that the use of CPR on Ms HAE is likely to cause her significant injury due to her fragile physical condition as a result of her long-term diagnosis of osteoporosis and other health issues. It was also not in dispute that Ms HAE's chronic lung condition and deteriorating respiratory function have, since 2009, led Mr and Mrs DYE and Ms HAE's long-term general practitioner to the view that a palliative approach was the most appropriate for Ms HAE. We accept Mr DYE's view that the use of CPR would be "painful and unnecessary" for his daughter and that Mr and Mrs DYE wish for her to be provided with dignity at this time in her life. 4. FACS submitted that the requirement of the appointment of a guardian to approve Ms HAE'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 persons responsible, and not guardians, were authorising such orders. FACS relies on the decision of FI to support this view although we note the errors contained in the FACS Policy Documents disseminated to FACS Managers (as previously identified) concerning the application of critical aspects of this decision. 5. 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]." 6. 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) 2. 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, albeit that the authorities cited in FI involved public health settings. Also unclear from the evidence is 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 as opposed to the time at or after which a resident has experienced cardiac arrest. The FACS Policy Documents clearly indicate that in the latter scenario, FACS take the view that 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]. Ms Ms RVD was unable to assist with this as, according to her evidence, the new policy approach was developed in area of FACS for which she is not responsible. 3. It has been no doubt difficult for family members such as the DYEs to understand why the new policy approach has been taken by FACS in circumstances where for the previous nine years FACS has not questioned the Resuscitation Plan authorised by Mr DYE. Despite FACS's position, it also appears to be the case that there has been confusion in communication about the policy given the evidence provided by Ms R that the staff of the Sydney group home were advised approximately three weeks ago that Registered Nurses on duty at The Sydney group home could, in the circumstances described, make a clinical decision that resuscitation should not be administered to Ms HAE. Clearly, confusion about such a critical issue for Ms HAE is not in her interests. 4. We decided that a guardianship order should be made for Ms HAE so that a guardian is authorised to make critical decisions in advance as to what resuscitation efforts should be made if Ms HAE experiences a cardiac arrest. Without such an appointment, the FACS policy requiring its staff to apply CPR will continue to be applied to Ms HAE which, on the basis of the evidence available to us and in Ms HAE's particular circumstances, would be burdensome and intrusive. 5. We decided that the guardian should be given authority to make health care decisions for Ms HAE. This will allow the guardian to make decisions including the decisions relating to the withholding of treatment. 6. In arriving at this view, we had careful regard to the importance of preserving Ms HAE's existing family relationships. For the reasons we set out below, and at their request, we appointed Mr DYE as guardian and Mrs DYE as the alternative guardian. We formed the view that the making of an order that recognises Ms HAE's parents in this manner is not only in Ms HAE's best interests but reflects the role that her parents have played throughout their daughter's life. 7. There was no evidence before us of particular cultural or linguistic issues that were relevant to our consideration of this matter. 8. We did not include any other decision-making functions in the order. We find that Mr and Mrs DYE are already regarded by all health care professionals in contact with their daughter as her persons responsible under Part 5 of the Act. This already provides them with legal authority to make all major medical treatment decisions for Ms HAE. 9. Similarly, we find that Mr and Mrs DYE have been, and will continue to make, all other lifestyle decisions for their daughter. It was not put to us by any party that Mr and Mrs DYE needed any other decision-making functions at this point as they have been and will continue to advocate on behalf of their daughter in all aspects of her life including in relation to the anticipated transfer of the Sydney group home to a new accommodation provider. Who should be appointed as guardian? 1. Mr and Mrs DYE wished to be appointed as their daughter's guardian and there was agreement by all parties that this appointment would be in Ms HAE's best interests. 2. 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. He/she 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. We were satisfied that Mr and Mrs DYE met all of the requirements set out in s 17(1) of the Act. We accepted the evidence that Mr and Mrs DYE are devoted parents with regular and close contact with Ms HAE and the group home staff that care for her. 3. There was no evidence of any conflict between the interests of Mr and Mrs DYE and those of their daughter. 4. We were also satisfied that Mr and Mrs DYE would be able and willing to exercise the health care function as guardians in relation to all health care and palliative care planning for their daughter especially as they have been advocating on their daughter's behalf in relation to these areas of her life for many years. Mr DYE, in particular, has been involved in discussions, planning, and ultimately decision making about a Not For Resuscitation order for his daughter since 2009. 5. Mr and Mrs DYE proposed that Mr DYE be appointed as their daughter's primary guardian and Mrs DYE be appointed as the alternative guardian. We made the appointments on this basis. 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 her 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 Ms HAE for three years on the basis that each of the requirements of s 18(1B) of the Act were satisfied. Ms HAE has permanent disabilities and, due to her profound intellectual disability, will never become capable of managing her person. The evidence before us indicated that a review of Ms HAE's palliative care plan, including consideration of whether or not to authorise a Not for Resuscitation order, takes 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 New South Wales Civil and Administrative Tribunal. Registrar 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: 08 June 2018