NSW Civil and Administrative Tribunal New South Wales Medium Neutral Citation: DKS [2019] NSWCATGD 37 Hearing dates: 15 May 2019 Date of orders: 15 May 2019 Decision date: 15 May 2019 Jurisdiction: Guardianship Division Before: J Moir, Senior Member (Legal) Dr B McPhee, Senior Member (Professional) F N Given, General Member (Community) Decision: The application for consent to special medical treatment (Cyproterone Acetate 200 mg per day) is dismissed after hearing. Catchwords: CONSENT TO MEDICAL TREATMENT – application for consent to special medical treatment – androgen reducing medication for the purpose of behavioural control – Androcur (Cyproterone Acetate) – patient with schizophrenia and acquired brain injury – history of inappropriate sexual behaviour – insufficient evidence that treatment is necessary, appropriate or in the patient's best interests – application dismissed. Legislation Cited: Guardianship Act 1987 (NSW), ss 33(2), 42(2), 44(2), 45(3)(b); Pt 5 Guardianship Regulation 2016 (NSW), reg 14(b) Cases Cited: None cited. Texts Cited: None cited. Category: Principal judgment Parties: 003: Consent to Special Medical Treatment DKS (the person) MZT (applicant) Representation: M Adams, separate representative for DKS File Number(s): NCAT 2014/00384064 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 CONSENT TO SPECIAL MEDICAL TREATMENT Background 1. DKS is a 63-year-old man who lives in a group home in reginal NSW, operated by a disability servicer provider. His sister, Ms Z is involved in his life. DKS has been diagnosed with schizophrenia as well as an acquired brain injury from a motor vehicle accident in his teens and has been noted to be experiencing cognitive decline. 2. On 28 February 2019 the Tribunal received an application for consent to special medical treatment from MZT, Team leader of DKS's group home. The proposed treatment is Anterone/Cyprocur (Cyproterone Acetate), and its intended use is to address inappropriate sexual behaviour by DKS. 3. It appears from the supporting material that DKS has actually been administered Androcur since 2015. This application was initiated because DKS's psychiatrist, Dr Y, proposed an increase in the dose from 100 mg a day to 200mg a day in November 2018. Staff from the disability service provider identified that this medication is a "chemical restraint" and so is regarded as a restrictive practice under the National Disability Insurance Agency (NDIA), which required approval. 4. On 18 April 2019 the Tribunal appointed a separate representative for DKS. 5. These Reasons for Decision arise from the hearing of this application. The hearing 1. The hearing was conducted in Sydney and DKS participated by telephone with MZT, Ms X, manager group home, and Ms W, psychologist. Ms Z attended the hearing in person as did Mr Matt Adams, the separate representative. Dr Y was not available to speak with the Tribunal, but in any event was not the applicant. 2. At the end of these Reasons for Decision are lists of the parties to the application. [Removed for publication.] The legislation does not confer the status of party on Ms Z, however, as her brother's "person responsible", the Tribunal is required to have regard to her views when making its decision. What did the Tribunal have to consider? 1. When considering an application for consent to special treatment, the Tribunal must be satisfied that: 1. The proposed treatment is the most appropriate form of treatment for promoting and maintaining the patient's health and wellbeing; 2. The proposed treatment is the only or most appropriate way of treating the patient and it is manifestly in his/her best interests; and 3. The proposed treatment complies with any relevant National Health and Medical Research Council guidelines. 1. In considering the above questions, the Tribunal must have regard to the views of DKS, MZT and Ms Z, who is his "person responsible" (Guardianship Act 1987 (NSW), s 44(2)) and the objects of Pt 5 of that Act. 2. The Tribunal must also have regard to the following matters, as outlined in s 42(2) of the Guardianship Act: 1. the grounds on which it is alleged that the patient is a patient to whom this Part applies, 2. the particular condition of the patient that requires treatment, 3. the alternative courses of treatment that are available in relation to that condition, 4. the general nature and effect of each of those courses of treatment, 5. the nature and degree of the significant risks (if any) associated with each of those courses of treatment, and 6. the reasons for which it is proposed that any particular course of treatment should be carried out. Is the proposed treatment 'special treatment'? 1. At the hearing MZT confirmed that the proposed treatment is Cyproterone Acetate 200 mgs a day. DKS had been taking Cyproterone Acetate 100 mg a day since 2015. Her understanding is that DKS was able to provide consent to this treatment on his own behalf in 2015, although she was not involved with him at that time. 2. Section 45(3)(b) of the Guardianship Act, and reg 14(b) of the Guardianship Regulation 2016 (NSW), define "special treatment" to include "any treatment that involves the use of androgen reducing medication for the purpose of behavioural control". Cyproterone Acetate is an androgen reducing medication, and the purpose of its use in DKS's life is to reduce behaviour in public which is believed to be sexually motivated. There is no suggestion that it is for the treatment of a medical condition. The Tribunal was therefore satisfied that it is "special treatment" because it is for the purpose of behavioural control only. Is DKS incapable of providing consent to the proposed treatment? 1. Section 33(2) of the Guardianship Act provides that a person is incapable of giving or withholding consent to medical or dental treatment if the person: 1. is incapable of understanding the general nature and effect of the proposed treatment, or 2. is incapable of indicating whether or not he or she consents or does not consent to the treatment being carried out. 1. The Tribunal noted a number of professional reports which provide background and detail about DKS cognition and capacity to consent to his own medication, as well as the behaviour which is said to require this treatment. These reports are: * Risk assessment report dated 27 April 2013, Mr V, Forensic Psychologist * Health Professional form dated 15 May 2019 from Ms W, Senior Psychologist, of another service provider * Forms from the disability service provider entitled "Medical Health Report" dated 24 September 2018 and 5 November 2018 from Dr Y * Letters dated 19 June 2018 and 20 November 2018 from Dr U, Chair of a University Department that deals with intellectual disability and mental health, and Head of a research institute * Capacity assessment report dated 25 August 2014 by Ms T, Psychologist, from the disability service provicer * Letters dated 12 March 2015 and 12 October 2015 from Dr S, Psychiatrist 1. This evidence indicates that DKS has a history of schizophrenia, although he is not believed to have any residual symptoms from this condition (but continues to be treated with an antipsychotic medication – Risperidone). He is reported to have sustained a brain injury in his mid to late teens which caused some degree of cognitive impairment, but it is unclear whether he may have had a pre-existing intellectual disability. He is now reported to be experiencing cognitive decline, although the cause of this has not yet been determined. 2. The Tribunal notes that in reasons for decision from 2014, the then Guardianship Tribunal, when considering an application for a guardianship order for DKS, found that DKS was a "person in need of a guardian", that is, that his disability was such that he was unable to make important decisions on his own behalf. However the Tribunal elected not to make a guardianship order because there was no perceived need at that time. The Tribunal makes this observation because it appears that subsequent to this DKS was prescribed Androcur. 3. The most recent and "on point" evidence for the Tribunal's purposes with this application, is in the report from Dr U dated 19 June 2018, in which he states that during his appointment with DKS, he was unable to tell him any of his medications, what conditions they were treating, or what the potential side effects are. Dr U concluded that DKS was not able to provide his own consent to medical treatment and recommended a substitute decision-maker be appointed to assist him in a range of areas. 4. DKS's presentation at the hearing was consistent with Dr U's view. His participation was very limited, even when asked direct questions. He knew he took tablets but he did not know what they were for or why he took them. 5. There was no dispute from the hearing participants that DKS is not able to consent to the proposed treatment. Mr Adams confirmed that in his view DKS is not able to consent to the treatment on his own behalf. 6. The Tribunal was satisfied that DKS is not able to consent on his own behalf to the proposed treatment. What is the particular condition of the patient that requires treatment? 1. DKS is reported to engage in behaviour which is believed to be sexualised when in public and particularly when he is at church. This primarily involves staring intently at young women and children. This behaviour is said to put him at risk of harm from others who might object to his intrusive conduct, as well as risk of him psychologically harming others. Based on Mr V's report, this has, on at least one occasion in the past also included masturbation. MZT confirmed that DKS has not been seen to be masturbating or indicating arousal in any other way in the time she has known DKS, and that this behaviour appears to no longer be present. There is consistent evidence that there have been no incidents where he has inappropriately touched anyone. 2. The Tribunal asked why DKS's staring behaviour is thought to be sexual, and why supressing his testosterone is the appropriate treatment. MZT says that the service relies on the views of the experts- Mr V, Dr S and Dr Y. 3. The Tribunal notes that Mr V's report is from 2013, and was prepared for the purpose of assisting services to decide what kind of support DKS needed as he moved from one accommodation provider to another. He refers to the evidence he was given, and notes reports of incidents of "inappropriate sexual behaviour", commencing in 2000. This included a recent occasion in early 2013 when he was seen masturbating while standing near two young girls and their mother. On other occasions he was staring at and "fixated" upon young teenage girls in a shopping mall. He was reported to have admitted to one of the care staff that he became aroused looking at young females. Mr V notes that DKS denied all of these matters, but Mr V questioned his truthfulness because of other unreliable evidence he gave. 4. Mr V conducted a number of assessments focussed on identifying a person's risk of committing sexual violence offences. He states that DKS is at a moderate risk of sexual offending, defined in his case as a "non contact sex offence, involving exposure of genitals and/or self masturbation of his genitals". He recommends a number of strategies, including: review by a psychiatrist to consider prescription of Cyproterone Acetate to reduce DKS's sex drive; supervision when in the community; instruction to DKS not to approach children under the age of 16; providing DKS with appropriate social skills and psychosexual education; and a six-month case review to assess the utility of the above. 5. The Tribunal noted that the letter from Dr S dated 12 March 2015 in which he refers to Mr V's report as "most extraordinarily useful". He refers to the issue of concern as follows: "From the point of view of the current carers, the big issue is that given his history of inappropriate sexual behaviour (clearly described and documented in the report from the forensic psychologist) should he be allowed to be unsupervised in public places. As always with people like [DKS], my concern is simply the quality of life for him. Discussions suggested that if he had no restrictions on his comings and goings and could be left alone at home if he chose to do so, this would greatly improve his quality of life, so this has to be the goal." He goes on to say that "the only way of guaranteeing (although nothing is 100%) that there will be no other inappropriate sexual behaviour, is to put him on Cyproterone, in a dose of 100mg at night". 6. It seems that this led to DKS starting this medication. There is no evidence available to the Tribunal about the impact this medication had on his behaviour. Such evidence might, for example, include records kept by care staff of the nature and frequency of any incidents. This would allow a rational assessment of whether the treatment was having the desired effect. There is also no evidence that any of the behavioural strategies suggested by Mr V were implemented, other than supervision when in the community. 7. The medical report from Dr Y from 24 September 2018 indicates that DKS had "problems "wandering off" at work (poor road sense/ogling females); and church (ogling young females)…Increase Cyproterone to 200mg". 8. The increased dose of medication was duly commenced (without lawful consent) and Dr Y reviewed DKS in November 2018. He notes in the medical report from that appointment "some improvement in sexualised behaviour on increased dose. Recommend continues Cyproterone 200mg… less "staring behaviour" at church from Cyproterone." 9. However notes from the care staff who accompanied DKS to that November 2018 appointment state "[Dr Y] asked staff how [DKS] had been going at church. Staff said that another staff member had noted that she thought he had improved. Staff also told [Dr Y] that they had taken [DKS] away on a holiday and had to keep reminding [DKS] not to stare at the young girls and children and that they even at times moved where they were sitting to try and stop this happening. [Dr Y] seemed more interested in the comment that he had been better at church and seemed to dismiss more the comments about his behaviour while we were away. [Dr Y]'s comment was that it was good that he seemed to be improving." 10. The Tribunal noted the two letters from Dr U. DKS was referred to him by Dr R, Geriatrician, because of the reported recent changes to DKS's cognition. Dr U spoke with DKS and MZT. Some of the history he reports is not consistent with other evidence (for example, that there were a number of incidents of masturbation "about two years ago" and that MZT had known DKS for around six years, when she told the Tribunal she did not know him in 2015). Specifically in relation to the issue of his inappropriate sexual behaviour Dr U states that "in recent times he stares intently at young women and this has been interpreted as having a sexual basis. What is unclear is whether the sexualised behaviour is occurring as an additional disinhibition, consequent on cognitive decline." 11. At the hearing, Ms Z said that her brother has always stared at people, men, women and children. She was very surprised when she was told some years ago that he had been seen masturbating behind a tree when there were children around. She has not known him to ever behave in this kind of way before. She does not see her brother often as he lives some distance from her, but she has known him longer than anyone else. 12. MZT agreed that DKS stares at people generally, including herself, however, she said that she thinks he stares more intently at young women and children. She does not think that he shows any other signs of arousal when he is staring, such as agitation and certainly no masturbation. The behaviour of concern is staring only, but staff worry about what he might do if he was unsupervised. MZT did not have available the records she said that staff keep about his behaviour when out in the community, but she said that from her understanding his staring behaviour occurs whenever he is in the community. Despite one staff member feeling he had improved, other staff did not agree, and she did not think that there was clear evidence that the increased dose of medication had led to any change or reduction in his staring behaviour. It appears that the records that are kept at the group home are not sufficiently detailed to analyse any change in his behaviour or the frequency of his behaviour. 13. MZT said that DKS is never out in public without a staff member, usually 1:1, though he is not funded for this level of supervision under the National Disability Insurance Scheme (NDIS). If he stares when in public, staff are able to redirect him and generally he does not have any difficulty with this. There is no suggestion that he has ever attempted to approach any of the people he stares at. 14. There is an incident report in the material provided to the Tribunal from May 2018, recording that on one occasion DKS swore at a staff member and hit them in the back, some time after having been redirected from staring at church. MZT said that there was a similar incident around the same time, but that there had not been any similar incidents since. She agreed that this behaviour is out of character for DKS. Given her evidence that DKS stares at people every time he goes out, and requires redirection, it seems that the occasions where he became agitated was not a typical behaviour for him. 15. In summary, based on all of the available evidence the "condition" which is said to require the proposed treatment is fixed staring, particularly at young women and children. What are the reasons for the proposed treatment and why is it proposed that the treatment should be carried out? 1. The treatment reduces testosterone levels in the body and this is expected to show a corresponding reduction in sexualised behaviour. In 2015 DKS was prescribed 100 mg Cyproterone Acetate per day by Dr S and this was increased to 200 mgs a day in September 2018 by Dr Y. As noted above, the Tribunal has not been given any records of incidents kept by the group home workers monitoring whether this medication has led to any reduction or any other change in DKS behaviour either when it was first prescribed, or when the increased dose was commenced. There was no evidence available to the Tribunal about DKS testosterone level, and whether this had been lowered by the medication. 2. The treatment is thought to be appropriate and necessary because DKS staring behaviour is interpreted as sexually motivated. The available evidence about this is unclear, however, the reported incident from 2013 where DKS was said to be masturbating in public, and the report that he admitted to a care worker that he was sexually aroused looking at young females appear to be the basis of this interpretation. 3. The treatment has been proposed because it is expected to reduce the risk of exposure to staring behaviour to vulnerable members of the community and to reduce the risk of negative consequences to DKS. This is based on the view that his behaviour is sexually motivated and that it may escalate. Ms X also said that having this treatment allows DKS to have more independence in the community. The Tribunal notes the evidence that DKS has 1:1 supervision at all times in the community even whilst he is taking this medication. Are there any risks associated with the proposed treatment? 1. The Tribunal is aware that administration of Androcur can pose short and long-term health risks including liver dysfunction and osteoporosis. Dr S refers in his 2015 letters to having the "appropriate pre-treatment blood tests" and "appropriate blood test for monitoring his use", but provides no detail of what these tests are or the results of any such tests. 2. MZT was not able to provide the Tribunal with information confirming that DKS had been monitored for any side effects. Dr U's letters of June 2018 and November 2018 both refer to "normal" results for blood tests, which appear to have included liver function. MZT said that DKS's GP has now arranged a bone density scan for him, but it is unclear if he has had a previous scan which would provide a baseline to assess if he has had any loss of bone density since being on this medication. What are the alternative options for treatment that are available 1. Dr U made various observations and recommendations in relation to DKS's psychiatric and physical health, including the issue of his staring behaviour. He states that there is a need to begin behaviour support planning, and support for staff for its implementation. He states "I would... reconsider whether or not he needs the Cyproterone. Essentially if [DKS] was to have more intensive support which he needs for his declining cognition, then the risk of him engaging in inappropriate sexual behaviour is substantially reduced and it could be that he could come off the anti androgen treatment without any great risk to the public." 2. In his November 2018 letter he states that DKS attended with his key worker, Ms Q. He states that (amongst other things) she continued to describe problems with "staring intently at young women and children particularly during visits to church. Cyproterone dose was increase to 200mg a month ago with variable reports as to whether this has been helpful." 3. Dr U includes in his recommendations are that DKS requires additional NDIS funding to meet his support needs, and that specific funding should be requested for behaviour support intervention to manage his challenging behaviour. He states "There is no convincing evidence that the increased dose of Cyproterone has made a clear and enduring difference to his inappropriate sexual behaviour. Reconsideration of is necessity, particularly considering its endocrine side effects should continue. We argue that increasing behavioural support, direct support and access to psychological support specifically with expertise in this area should be sought as first line management." 4. MZT and Ms X said that despite their best efforts they have been unsuccessful in their applications for increased NDIS funding for DKS to have 1:1 support in the community. They do provide this to him because they believe it is necessary, but this is at the expense of other residents. Ms X suggested that the NDIA have formed the view that because DKS is taking Cyproterone Acetate, the risk is adequately managed. She contemplated that the view may change if he were not taking this medication. 5. Ms W said that she became involved with DKS in February 2019 and that she is preparing a Behaviour Support Plan for him. She anticipates that this will not be completed for around another four months because she needs to get to know him well. In the meantime she said that there are a range of strategies and recommendations she can make to his carers about managing his behaviour, and helping to educate him about appropriate/inappropriate behaviour particularly the differences between public and private behaviour. 6. It was evident that there are respected professionals with expertise in intellectual disability who consider that DKS would benefit from behavioural strategies, including education and supervision which appear not to have been tried to date (as best as anyone now involved with him is aware). Clearly behavioural strategies are alternative options for treatment and management of his staring behaviour. Dr U's view seems to be that these alone should be adequate, given DKS increasing need for support due to his declining cognition. The fact that funding for has not yet been approved is not, in the Tribunal's view, a reason for continuing medication which is of questionable utility for DKS. What are the views of DKS? 1. DKS was unable to express a view because of the extent of his disability. What are the views of MZT? 1. MZT's views are set out above. She was unsure if the treatment is necessary or that it serves the purpose for which it as intended. However she was concerned about the risks to vulnerable members of the community if the treatment did not proceed. She was also concerned about whether her organisation is adequately funded and resourced to supervise DKS should his behaviour escalate, as he already receives a greater level of staff time than his NDIS funding provides for. What are the views of Ms Z? 1. Ms Z supported the medication being continued if it was necessary. She did not want any harm to come to children or young women because of her brother. However she was not persuaded that it is necessary, based on her knowledge of her brother's behaviour. Submission from Mr Adams 1. Mr Adams referred to Dr U's reports and noted that there were alternative treatments/ strategies which had not been tried to date. He expressed concern about the lack of detailed evidence for the views about the sexual basis of the conduct. He also noted that the potential side effects do not appear to have been appropriately monitored. Ultimately, given these concerns, his submission was that the Tribunal should not consent to the proposed treatment. Is the proposed treatment the most appropriate treatment, how will the proposed treatment promote and maintain the patient's health and wellbeing, and is the proposed treatment manifestly in the patient's best interests? 1. Based on the available evidence, the Tribunal was not satisfied that the treatment is the most appropriate treatment, that it will promote and maintain DKS's health and wellbeing, or that it is manifestly in his best interests to receive this treatment. There is little evidence to demonstrate that the current behaviours DKS has been displaying are sexual, rather than some other learnt behaviour. Even if the behaviour is sexual, it does not seem that records have been kept in sufficient detail to assess the impact of the medication which has already been started and the reports from care staff are inconsistent. 2. There is persuasive opinion from Dr U that the medication should not be necessary if adequate behaviour support was in place. Ms W is in the process of preparing this and is in a position to assist staff to implement behavioural strategies immediately, even prior to a final plan being produced. Given the potential side effects of the treatment and the impact on DKS's endocrine system (not a side effect but an intended outcome of the treatment), behavioural strategies are likely to less invasive and more consistent with supporting DKS health and wellbeing. 3. Preferring what amounts to chemical restraint over behaviour support and supervision is, in the Tribunal's view, contrary to DKS's rights and interests. DKS is entitled to have sexual feelings, which this medication limits, without reliable current evidence that it is necessary. 4. On balance, there is simply insufficient evidence that reducing DKS's androgen levels is necessary to address the staring behaviour he displays in public. The Tribunal is not satisfied that the medication is either the most appropriate treatment, or that it is manifestly in his best interests. 5. The Tribunal therefore declined to consent to the administration of Androcur at the proposed dose of 200 mg a day to DKS. ********** 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