NSW Civil and Administrative Tribunal New South Wales Medium Neutral Citation: TZC [2021] NSWCATGD 41 Hearing dates: 9 September 2021 Date of orders: 9 September 2021 Decision date: 09 September 2021 Jurisdiction: Guardianship Division Before: R H Booby, Senior Member (Legal) Dr B McPhee, Senior Member (Professional) L Porter, General Member (Community) Decision: The Tribunal consents to the following special medical treatment being provided to TZC: total laparoscopic hysterectomy and if necessary, conversion to abdominal hysterectomy, under a general anaesthetic and any necessary treatment that would normally be provided in association with or directly consequent upon the above treatment. This consent is effective for a period of 12 month(s) from the date of this order. Catchwords: CONSENT TO MEDICAL TREATMENT – application for consent to special medical treatment – total laparoscopic hysterectomy and if necessary conversion to abdominal hysterectomy – 21-year-old woman – intellectual disability, brain injury and mental illness – patient not able to understand the effects of the treatment – patient not able to provide informed consent – procedure will result in permanent infertility – whether treatment is the most appropriate form to promote health and well-being – whether proposed treatment is necessary to save patient's life or prevent serious damage to health – consent given. Legislation Cited: Guardianship Act 1987 (NSW), ss 33, 33(1)–(2), 36(1)(b), 42, 44, 45(2) Cases Cited: None cited. Texts Cited: None cited. Category: Principal judgment Parties: 002: Consent to Special Medical Treatment TZC (the person) TAN (applicant) UYC (carer) Representation: Solicitors: S Robey as separate representative for TZC File Number(s): NCAT 2021/00233771 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 SPECIAL MEDICAL CONSENT Background 1. TZC is 21 years old and lives in regional NSW with her mother, UYC. 2. On 16 August 2021 the Tribunal received an application seeking consent to medical treatment for TZC. The applicant was TAN, a gynaecologist from a private hospital in regional NSW. The proposed treatment was a total hysterectomy. 3. On 26 August 2021 the Tribunal ordered that TZC be separately represented in respect of the application. Ms Susan Robey appeared as the separate representative. The hearing 1. At the end of these Reasons for Decision are lists of the parties to the application and the witnesses who attended the hearing. [Appendix removed for publication.] WHAT MUST BE PROVED? 1. If a person is incapable of giving informed consent to special medical treatment, then only the Tribunal may provide consent: Guardianship Act 1987 (NSW), s 36(1)(b). Such treatment is defined in s 33(1) of the Guardianship Act as including: "any treatment that is intended, or is reasonably likely, to have the effect of rendering permanently infertile the person on whom it is carried out" 1. Under s 33(2) of the Guardianship Act, a person is incapable of giving consent to the carrying out of medical 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 Guardianship Act requires that the Tribunal must not give consent to the carrying out of special treatment unless it is satisfied that the treatment is necessary to (a) save the patient's life or (b) to prevent serious damage to the patient's health: Guardianship Act, s 45(2). 2. The Guardianship Act imposes a further consideration on the Tribunal in s 44 of that Act. That section directs that if consent is to be given to medical or dental treatment, the Tribunal must be satisfied that it is "appropriate for the treatment to be carried out" and must have regard to the views of the patient, the person who is proposing that medical treatment be carried out on the patient and any persons responsible for the patient. 3. The Tribunal must also take into account matters set out in s 42 of the Guardianship Act which are: 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. 1. In summary, therefore, the issues for determination by the Tribunal were as follows: 1. Is the treatment proposed by the applicant "special medical treatment"? 2. Is TZC incapable of giving consent to the proposed special treatment? 3. Is the treatment necessary to save TZC's life or is the treatment necessary to prevent serious damage to TZC's health? 4. Is the proposed special treatment the most appropriate form of treatment for promoting and maintaining TZC's health and well- being? Is the proposed treatment 'special treatment'? 1. TAN sought consent for a total laparoscopic hysterectomy under a general anaesthetic and if necessary, conversion to an abdominal hysterectomy. 2. Of relevance to the current application, special medical treatment is defined in s 33 of the Guardianship Act as including any treatment that is intended, or is reasonably likely, to have the effect of rendering permanently infertile the person on whom it is carried out. 3. We were satisfied that the proposed hysterectomy would render TZC permanently infertile and is therefore special medical treatment. Is TZC 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. In the application TZC is described as having an intellectual disability, brain injury and mental illness. 2. In a Health Professional Report Form, TAN provides the following information: 1. TZC has left hippocampal sclerosis and left temporal hypometabolism post influenza A encephalitis at 15 months. 2. TZC has been diagnosed with anxiety and she has selective mutism. 3. TZC has mild epilepsy. 4. A psychological assessment report compiled in 2019 reported that TZC's scores were in the extremely low range and her performance on testing was the equivalent of a 6-year-old. 1. During the hearing TZC did not comment on the application when invited to do so. 2. UYC told us that: 1. TZC had discussed the proposed procedure with a counsellor. She said that she has also discussed the procedure with her and has described it as taking out her "belly or uterus" and has explained that TZC would be unable to have children. 2. It was her view that TZC understands the procedure to be a means of stopping her pain. She thinks that sometimes TZC understood that the treatment would prevent her having children, but that other times she did not understand that this was the case. 3. TZC has had some previous surgery including removal of an ovary and removing a dislodged Mirena device and has some understanding of the procedures for surgery. 1. In a Health Professional Report Form for Special Medical Treatment, TAN advises that: 1. TZC experiences heavy menstrual bleeding and dysmenorrhea. 2. In her discussions with TZC the latter has not been able to clearly communicate her symptoms and appears to lack an understanding of her treatment options. Her intellectual disability and anxiety make communication very difficult. 3. TZC has written a letter to TAN saying that she wants the bleeding and the pain to stop. 1. TAN told us that: 1. She had explained the procedure to TZC but when she asked her about it subsequently, TZC was not able to remember the explanation. 2. She has also explained to TZC that if she has the procedure, she would not be able to have children. 3. In TAN's view, TZC understands that the proposed procedure will relieve her pain but lacks a deeper understanding of the procedure. 4. TZC speaks very little but had written a letter indicating that she did not want pain and did not want to have children. 5. TAN had performed the previous surgery with the consent of UYC because at that time TZC was a minor. She was able to explain that procedure to TZC because the cyst was causing pain and the procedure could be explained as removing the source of the pain. The treatment did not render TZC infertile so there was no need to discuss infertility with her. 1. Ms Robey said that she had discussed the proposed procedure with TZC. Whilst TZC is selectively mute, she did engage in some discussion through UYC. Ms Robey believes that TZC has some insight into the proposed procedure, but she was not able to conclude that she is able to consent to the treatment. 2. Having considered the evidence we were satisfied that TZC has some understanding of the proposed procedure in that she has a general understanding of the surgical process and the nature of the procedure. However, she was unable to recall TAN's explanation about the procedure and it is uncertain if she understands that the procedure will render her permanently infertile, or the possible emotional effects of that infertility. Whilst she understands the procedure as a means of dealing with her pain and has some understanding of the nature of the procedure, we were not satisfied that she has an understanding of the effects of the treatment such that she is able to provide informed consent. What is the particular condition of the patient that requires treatment? 1. In her written and oral evidence TAN indicates that TZC has painful and heavy menstrual bleeding. She is very distressed by the bleeding which affects her ability to leave the house and to attend her TAFE course. Her mother has reported an increase in her seizure activity associated with the bleeding. 2. TAN indicated that the seizures could be due to epilepsy or could be pseudo-seizures resulting from anxiety, but that they are related to heavy bleeding. 3. UYC said that: 1. TZC experiences pain at 5-6 out of 10 pain level regularly and that for two weeks out of every month the pain is at a 9-10 level. At those times TZC has increased incidence of seizures and is not able to attend TAFE. 2. Over the past two to three years TZC's needs have increased due to increased seizure activity. She has now become incontinent, and an EEG has shown damage to two parts of her brain, whereas when she was aged six the damage was only to one part of her brain. Further testing is proposed to assess the extent of damage caused by the increase in seizures. 3. At the times of heavy bleeding and pain TZC experiences lack of sleep and has impaired mobility and physical ability. She is sometimes violent and has punched holes in the wall of the home at these times. 4. Medication to reduce the pain has not been effective and her extreme reactions continue despite counselling designed to assist her to deal with her emotions. What are the alternative options for treatment that are available? 1. In her written and oral evidence, TAN indicated that in her view there is now no alternative treatment as all other alternatives have been tried or are not appropriate. In particular she noted the following: 1. A Mirena device has been trialled, but the bleeding continued. TZC was first fitted with a Mirena device in 2014 when she was 14 years old. Previous Mirena devices have become dislodged. One was removed and another was left in situ. It was thought that a dislodged Mirena could have been a source of TZC's pain. Continued use of Mirena devices is possible, but so far, the use of that device has not stopped TZC's heavy bleeding. As it also possible that the Mirena is a cause of pain, removing it might address the pain to some extent, but it would be likely to leave the heavy bleeding untreated and TZC's anxiety and period-pain-induced reactions would continue. 2. Depo Provera and tranexamic acid have been trialled unsuccessfully. TZC gained a significant amount of weight on the Depo Provera that was first used in approximately 2015. Weight continues to be an issue 3. The use of the combined oestrogen and progesterone oral contraceptive pill is contraindicated because TZC has a low protein S level. She is currently using a progesterone only contraceptive that has not been effective. 4. The use of the Mirena and Depo Provera were initially recommended at a children's hospital when TZC was seen by a gynaecologist, a paediatrician and a haematologist. Progesterone only treatment with the Depo Provera and the use of the Mirena were less likely to adversely affect TZC's hormonal balance. 5. Endometrial ablation is a possible alternative but would need to be accompanied by a tubal ligation and would also render TZC permanently infertile. The treatment would likely be effective for a limited time only and her symptoms would be likely to recur. Why is it proposed that the treatment should be carried out? 1. The treatment is proposed to prevent TZC's heavy, continual and painful menstrual bleeding that in her particular circumstances, including her intellectual disability, epilepsy and anxiety condition, is seriously affecting her health and lifestyle. Are there any risks associated with the proposed treatment? 1. TAN said that whilst there are risks associated with a general anaesthetic, TZC has had previous surgery with a general anaesthetic and has not had serious side effects from the anaesthetic. 2. Previously there were some issues post-surgery for TZC when she had absent seizures that neurologists considered were likely to be due to anxiety. This was dealt with previously by an extended stay in the intensive care unit. 3. TZC is at increased risk of thrombosis that would be controlled with medication. Is the proposed treatment the most appropriate treatment? 1. In her written and oral evidence TAN commented to the following effect: 1. In the case of a patient of TZC's age she would usually be extremely cautious about recommending a hysterectomy because of the possibility that the patient would change her mind about a desire for pregnancy. She would usually seek a repeated request for treatment and a consistent indication of a view about pregnancy before recommending the hysterectomy and would always seek to explore alternative options. 2. In respect of a possible pregnancy for TZC: 1. TZC has a protein S deficiency and is at increased risk of thrombosis. 2. TZC's intellectual disability would make it impossible for her to care for a child and her epilepsy could be uncontrolled given that she has not been seizure free for any length of time. 3. TZC has severe anxiety that would be likely to be exacerbated if she were to have a child. 4. The fact that pregnancy would be such a struggle for TZC has caused TAN to recommend a different approach for TZC compared to other patients of her age. 1. Despite believing that TZC's circumstances are different from others who might be more able to manage a pregnancy and parenting, TAN indicated that she has postponed recommending the hysterectomy. In relation to the history of TZC's condition: 1. She first sought treatment for the condition in 2014 at the Children's Hospital. 2. The Mirena device should have been most effective in its first three years but has not been so. Over the time of trying to treat TZC using the Mirena she has been subjected to pain and distress that has affected her day-to-day life. 1. We accepted the evidence of TAN that the range of alternative treatments have either been tried or are inappropriate, and that there is no realistic alternative to the proposed treatment and therefore that it is the most appropriate treatment. 2. We also accept the evidence of UYC that whilst efforts have been made to address the pain and TZC's reaction to it using pain medication and counselling, these strategies have been unsuccessful. How will the proposed treatment promote and maintain the patient's health and wellbeing? 1. In a letter dated 30 June 2020 addressed to UYC, Ms Z, a Family and Relationships Counsellor/Social Worker with a community health service, indicates the following regarding TZC's communication in counselling sessions: 1. TZC had indicated that she feels pain in the bottom of her tummy and in her head, she gets dizzy and sometimes falls over when at home or at her hospitality training course. She is afraid of falling into a hot oven or onto a knife if she falls and is afraid that she might hit her head. She feels scared and embarrassed when she falls over in front of friends. 2. She bleeds too much and the bleeding gets heavy and her pain gets worse. It is hard to sleep and she gets angry and has a sore head. She wants the pain to stop. 3. She does not want babies because she does not want to clean nappies and to get up in the night when she is tired and the baby is crying. 4. In the future she wants to feel happy because she has no pain. 1. In a letter addressed to UYC and dated 6 September 2021, Ms Z indicates the following: 1. She has been working with TZC since 2019 and despite her selective mutism she is able to have some discussions with her. 2. In a counselling session in August 2021 TZC expressed frustration with her pain and said that she wishes she did not have pain in her head and stomach, and heavy bleeding with seizures. 3. Ms Z will continue to work with TZC in counselling sessions and supports the application for the procedure to alleviate her physical conditions. 1. Ms Robey submitted that in her view: 1. TZC's pain and heavy bleeding in conjunction with her anxiety are such that they cause serious damage to her health and that the treatment is likely to alleviate that damage. 2. TAN had taken a very cautious approach over a long period and has tried all possible alternative options and has now reached a point where no other treatment is adequate to treat TZC's condition. 1. Taking into account the evidence of TAN and UYC, we are satisfied that the treatment is necessary to treat a condition that, in conjunction with TZC's epilepsy and anxiety, is causing serious damage to her physical health due to the high level of pain and its effects on her seizure activity, and to her psychological health as is indicated by her extreme pain reactions and inability to undertake her usual day to day duties as a result of the pain and bleeding. Is the proposed treatment necessary to save the patient's life or prevent serious damage to health? 1. Whist we are satisfied that the treatment is necessary to prevent serious damage to TZC's health we were not of the view that her condition is life-threatening. Conclusion 1. Taking into account all of the matters set out above we consented to the proposed treatment as being the most appropriate treatment to treat the condition that is having the effect of seriously damaging TZC's health. 2. We made the consent effective over a long period due to uncertainty about hospital vacancies taking into account the current COVID 19 pandemic. ********** 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: 06 October 2022