NSW Civil and Administrative Tribunal New South Wales Medium Neutral Citation: QMI [2016] NSWCATGD 59 Hearing dates: 19 July 2016 Date of orders: 19 July 2016 Decision date: 19 July 2016 Jurisdiction: Guardianship Division Before: S McCarthy, Senior Member (Legal) Dr B McPhee, Senior Member (Professional) P Davidson, General Member (Community) Decision: The Tribunal consents to the following special medical treatment being provided to Miss QMI: 1. Abdominal hysterectomy. 2. 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 months from the date of this order. Catchwords: SPECIAL MEDICAL TREATMENT – Application for consent to special medical treatment – abdominal hysterectomy – 20-year-old woman – severe intellectual disability – whether the treatment is the most appropriate form of treatment to promote health and well-being – whether treatment is necessary to prevent serious damage to health – alternative treatment has failed, or is not likely to be effective or suitable – consent given Legislation Cited: Guardianship Act 1987 (NSW), Pt 5, ss 33, 33(2), 36(1)(b), 42(2) Category: Principal judgment Parties: Miss QMI (subject person) Mrs LMI (carer) Dr CYM (applicant) Representation: Separate Representation: T Jovanovic (subject person) File Number(s): 59822 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 APPLICATION FOR SPECIAL MEDICAL CONSENT What the Tribunal Decided 1. The Tribunal consented to the application for special medical treatment for Miss QMI in the terms set out in the order dated 19 July 2016. Background 1. Miss QMI is aged 20 years and resides with her family in regional NSW. Miss QMI has a complex medical history, discussed in more detail later in these reasons. She is diagnosed as having Trisomy 21 (Down Syndrome), severe intellectual disability, autism, attention deficit hyperactivity disorder, heart defects, Moya Moya syndrome, and has had multiple strokes and transient ischaemic attacks (TIA). Moya Moya syndrome is a rare and progressive condition where the arteries supplying the brain are constricted and the blood flow is blocked. This can result in strokes, transient ischaemic attacks, and seizures. 2. Miss QMI is said to be extremely distressed by blood and not able to manage menstruation. 3. Dr CYM, Gynaecologist, made an application seeking the Tribunal's consent for special medical treatment for Miss QMI, an abdominal hysterectomy. 4. On 31 August 2015, the Tribunal adjourned the hearing of the application for special medical consent for a period of three months and made Directions. On 27 October 2015, the Tribunal adjourned the Directions hearing for a period of three months. On 22 January 2016, the Tribunal adjourned the Directions hearing for a period of three weeks. On 3 March 2016, the Tribunal adjourned the hearing of the application for special medical consent for a period of three months. 5. The Tribunal made an order appointing a separate representative for Miss QMI in the proceedings. Ms Tijana Jovanovic, solicitor, appeared as the separate representative. 6. The hearing today is the substantive hearing of the application for consent to special medical treatment for Miss QMI, hysterectomy. 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 did the Tribunal have to consider? Legal framework 1. The Objects of Part 5 of the Guardianship Act 1987 (NSW) which deals with medical consents are: 1. to ensure that people are not deprived of necessary medical or dental treatment merely because they lack the capacity to consent to the carrying out of such treatment, and 2. to ensure that any medical or dental treatment that is carried out on such people is carried out for the purpose of promoting and maintaining their health and well-being. 1. If a person is incapable of giving informed consent to special medical treatment then only the Tribunal may provide consent (s 36(1)(b) of the Guardianship Act). 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. Included in the definition of Special Treatment as defined at s 33 of the Guardianship Act is 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. 2. When considering an application for consent to special medical treatment of this kind the Tribunal must not give consent unless it is satisfied that: 1. The proposed treatment is the most appropriate form of treatment for promoting and maintaining the patient's health and well-being, and that 2. The proposed treatment is necessary to save the person's life or prevent serious damage to the person's health. 1. 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 Part 5 of the Guardianship Act 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 considering the above questions, the Tribunal must have regard to the views of Miss QMI, Dr CYM, health professionals, and Miss QMI's person responsible and the matters referred to in s 42(2) of the Guardianship Act and the objects of Part 5 of the Guardianship Act. Is the proposed treatment 'special medical treatment'? 1. The proposed procedure is an abdominal hysterectomy. The procedure involves the removal of Miss QMI's uterus and she would be rendered permanently infertile. The procedure is therefore special treatment. Is Miss QMI incapable of providing consent to the proposed treatment? 1. Miss QMI was not able to extensively participate in the hearing and did not appear to understand the purpose of the proceedings. She wishes for the bleeding to stop. 2. Ms Z, clinical psychologist, stated in a report dated 2 November 2015 that Miss QMI has Down Syndrome (Trisomy 21), autism spectrum disorder, and Attention Deficit Disorder. Miss QMI has very limited cognitive abilities and adaptive skills. She functions in the severe range of an intellectual disability. 3. Dr Y, Neurologist, in a report dated 15 October 2015, stated that he has been involved in Miss QMI's care as a stroke specialist since 2011. He comments on Miss QMI's highly complex medical history including Down Syndrome, atrial and ventricular septal defects in her heart, multiple past strokes from Moya Moya syndrome, obesity, obstructive sleep apnoea, autism, and attention deficit hyperactivity disorder. He reports that Miss QMI is "only able to understand simple concepts" and that: "her intellectual function prevents her from providing informed consent for medical procedures. It also prevents her being able to understand the normal nature of menstruation." 1. Mr X, a Professor of Neurology at a university in Sydney, stated in a report dated 18 August 2015 that Miss QMI's main disability is Down Syndrome and Moya Moya syndrome. While Miss QMI's cognitive capacity has not been formally assessed by Mr X, he states it is clear that she is severely disabled and unable to provide consent to medical treatment as she is unable to understand the relevant issues. 2. Mrs LMI, mother, is of the view that Miss QMI is not able to understand fully the proposed treatment. Ms Tijana Jovanovic is of the view that Miss QMI is not able to give informed consent to the proposed special medical treatment. 3. The Tribunal is satisfied, based on the professional reports, Mrs LMI's evidence and Miss QMI's presentation and evidence, that Miss QMI is not capable of providing informed consent to the proposed treatment. Miss QMI is not capable of understanding the general nature and effect of the proposed treatment and is incapable of indicating whether or not she consents to the treatment being carried out. The evidence and views of Mrs LMI, mother 1. Mrs LMI provided extensive documents concerning her daughter's health and medical conditions as well as giving evidence at the hearing. She stated that Miss QMI becomes very agitated and distressed by menstrual and breakthrough bleeding (unpredictable bleeding occurring between her periods or despite hormonal attempts to stop her periods). Miss QMI experienced menstruation from a young age and in 2009 at age 13 was started on continuous contraceptive pills to suppress bleeding. This was stopped in 2011 when Miss QMI was found to have had several strokes and was diagnosed as having Moya Moya Syndrome. Despite using other hormonal preparations to prevent bleeding, Miss QMI has had regular breakthrough bleeding and has at times had prolonged and heavy periods with clots. Mrs LMI stated that the bleeding and Miss QMI's reaction to it impacts heavily on Miss QMI's emotional health and well-being. It stops her from attending day programs and seeing her friends as she becomes highly anxious and distressed at these times. Using sanitary pads to contain the blood has not been successful as Miss QMI refuses to wear the pads. Miss QMI's psychologist has devised strategies to deal with Miss QMI's distress and these have been put in place but with little success as Miss QMI continues to experience significant distress and anxiety whenever she bleeds. Even when she is not bleeding Miss QMI ritualistically checks her bed sheets and underpants for blood. When she is bleeding and for several days afterwards she checks much more frequently and will go to the toilet every few minutes to check. She changes her underwear frequently and constantly wants to wash. Miss QMI becomes very depressed at the time of her bleeding and refuses to attend her day program and sometimes refuses to come out of the bathroom. Mrs LMI stated that Miss QMI's reaction to the bleeding is becoming worse as she gets older (possibly because the many strokes she has experienced have reduced her capacity generally) and the anxiety and distress is continuing for longer after the bleeding has stopped. Miss QMI becomes angry and abusive and tells Mrs LMI to "stop blood". She has attempted to get a kitchen knife and has told Mrs LMI to "cut it out". Miss QMI has shown self-harm tendencies when she experiences bleeding. 2. Miss QMI is currently taking Provera tablets (which contain the hormone progesterone) in an attempt to prevent menstruation but still has regular episodes of breakthrough bleeding. If Miss QMI's bleeding becomes more frequent or heavier the only option is to increase the dose of Provera, with the increased risk of side effects of that medication, including obesity. 3. Mrs LMI stated that Miss QMI's behaviours during bleeding significantly impact on the family unit including on Miss QMI's brother who also has autism. 4. Mrs LMI stated that following the diagnosis of Moya Moya syndrome Miss QMI had surgery to insert stents in cerebral arteries. A recent MRI scan shows that Miss QMI's left carotid artery has occluded which presents her with an even higher stroke risk and will possibly need more surgery. 5. Mrs LMI told the Tribunal that Miss QMI has had 14 strokes and many more TIAs ("mini-strokes"). Because of her high-risk of stroke Miss QMI takes anticoagulant medication which affects and increases the bleeding she experiences. Other medication Miss QMI takes for seizures also interacts with hormonal medications, and Mrs LMI fears her daughter is denied some medications (for seizures or stroke prevention) which might be of benefit to her because they are not able to be used while she is taking hormonal medications to prevent menstrual bleeding. 6. Mrs LMI stated that there is extensive research being done into Moya Moya syndrome at a university overseas. 7. Mrs LMI supports the application and seeks consent for Miss QMI to undergo an abdominal hysterectomy to stop the bleeding. The evidence of Ms Z, Clinical Psychologist 1. Ms Z provided the Tribunal with several reports concerning Miss QMI dated 11 December 2014, 2 November 2015 and 25 February 2016. She reports that Miss QMI has very complex medical needs and an ever-present risk of having a stroke. In addition to Down Syndrome Miss QMI has also been diagnosed with autism spectrum disorder and attention deficit hyperactivity disorder. Consistent with these diagnoses Miss QMI experiences very high levels of anxiety which increases when she has any menstrual or breakthrough bleeding. Ms Z stresses that Miss QMI needs to remain calm and stress free, otherwise the incidence of her having a stroke or other neurological event increases. 2. Ms Z reports that Miss QMI has struggled with breakthrough and menstrual bleeding and is very distressed at the sight of blood. Menstruating and breakthrough bleeding cause Miss QMI great distress. 3. Miss QMI's overall adaptive behaviour skills are extremely limited compared to persons of her own age and she has severe expressive and receptive communication difficulties. Miss QMI requires a high degree of carer support to access her day program and other places in the community. Her socialisations skills are an area of strength for her. 4. Triggers for Miss QMI to have heightened anxiety and frustration and exhibit challenging behaviours include changes in her routine and sensory experiences she does not understand. Ms Z stated that Miss QMI needs to have a soothing and calm environment and she needs to engage in a range of behaviours that she finds calming and relaxing. 5. Miss QMI is unwilling to tolerate wearing a pad when bleeding and is very distressed by attempts of others to help her keep sanitary pads in place or have them changed throughout the day. Ms Z stated that Miss QMI's mother reports that Miss QMI is reluctant to wear underwear in case she sees blood. She will not tolerate even the smallest amount of blood on her underwear and changes her underwear multiple times a day. Miss QMI has said to her mother "I hate this blood, I hate it." Miss QMI is very distressed by the personal care tasks associated with managing a period and her anxiety levels increase sharply. This is not good for her health with her Moya Moya condition. Keeping Miss QMI calm is very important as otherwise her risk of stroke or other neurological event increases. When Miss QMI has a period her family and support workers struggle to keep her calm. 6. Ms Z stated in her report dated 25 February 2016 that Miss QMI refers to a period or breakthrough bleeding as "blood down there" and "I don't like it". Miss QMI told Ms Z that she wanted to "stop blood" and "don't want it to come out". Ms Z states that in an interview with Miss QMI's parents on 4 February 2016, they said Miss QMI had experienced breakthrough bleeding four times in the past three months. Mostly when she has any bleeding Miss QMI will not leave the house, or if she does and then sees "one spot of blood" she becomes very distressed and takes off her pad and underwear. As she is unlikely to put them on again this necessitates a quick return home. 7. Ms Z has spoken with a support worker for Miss QMI who confirmed that Miss QMI becomes distressed with bleeding saying "that's disgusting" and crying. She is very reluctant to accept help with changing her underwear, wants to go straight home and cannot be persuaded to stay at the day program. 8. Ms Z stated in her report that she fully supports Miss QMI to receive whatever intervention is recommended which stops her from experiencing periods and breakthrough bleeding. The evidence of treating health professionals 1. Dr Y, Neurologist, stated in reports dated 15 October 2015 and 2 February 2016 that Miss QMI is at extremely high stroke risk related to Moya Moya disease and has already had multiple strokes since 2011. An oestrogen containing contraceptive pill is the standard formulation and continuous use enables prevention of menstruation and breakthrough bleeding. Use of oestrogen containing contraceptives is contraindicated in Miss QMI due to their risk of causing stroke. There is strong evidence that oestrogen containing contraceptive pills increase the risk of all forms of blood clotting including that which occurs in stroke and approximately doubles the risk of stroke. Dr Y stated that it is standard practice to stop all forms of oestrogen containing contraceptives in anyone who has had a stroke or transient ischaemic attack or even those at increased risk of stroke. The doubling of even a very low-risk of stroke is considered an unacceptable risk. Dr Y stated that Miss QMI has been very fortunate to have made quite good recovery from her previous strokes but because there has been a loss of brain tissue with each stroke her reserve capacity is diminished and the risk of significant disability or death is increased. Progesterone-only agents do not have the same clotting risk but can result in breakthrough bleeding and have been associated with major weight gain. Obesity in turn increases Miss QMI's already high stroke risk with the same potential outcomes of death and disability. Dr Y is of the view that a hysterectomy appears to be the only safe means to prevent further menstruation and the severe impact that her bleeding has been having on her psychological well-being. Dr Y supports the application for consent for a hysterectomy. 2. Dr CYM, Gynaecologist, stated that the application is being made to seek consent for Miss QMI to have an abdominal hysterectomy. Miss QMI has significant reactions to menstrual bleeding. Miss QMI has been prescribed Depo Provera and Provera but continued to experience breakthrough bleeding and menstrual bleeding. It is not possible to use an oestrogen containing medication because of her increased risk of stroke. Other measures to deal with the bleeding have been considered. Insertion of a Mirena IUD under general anaesthetic was attempted unsuccessfully and hysteroscopy at the same time showed that endometrial ablation would not be possible. A progesterone implant (Implanon) has not been tried, however with Implanon, Dr CYM said there is a 60% chance that there will be no change with Miss QMI's bleeding, a 20% chance that the bleeding will reduce but not stop completely and only a 20% chance that the bleeding will stop. Dr CYM said there is no other way suitable, apart from hysterectomy, to prevent Miss QMI having menstrual or breakthrough bleeding. Because of her extreme reaction to menstrual bleeding Dr CYM considers a hysterectomy to prevent bleeding would benefit Miss QMI and improve her quality of life. 3. In a letter dated 12 May 2015, referring to an operative procedure done on 8 May 2015 (the report of which was included) Dr W, Staff Specialist in Maternity and Gynaecology at a public hospital in regional NSW, stated that Miss QMI's uterus is too small to accommodate a Mirena IUD and would be unable to accommodate a global endometrial ablation device. Dr W stated that a vaginal hysterectomy would also be very difficult due to Miss QMI's very small vagina and lack of descent of the uterus. 4. The risk of the procedure for Miss QMI has been assessed and commented on by specialists from three different medical disciplines. 5. Dr V, Staff Specialist Haematologist, stated in a report to Miss QMI's GP dated 1 December 2015 that Miss QMI is unlikely to be at increased risk for bleeding during any proposed surgery and although her risk of venous thromboembolism (blood clots in veins) would be higher than a standard patient, this could be managed with a longer course of prophylactic anti-clotting medication after the operation. 6. Associate Professor U, Director of Perioperative Services at the public hospital in regional NSW, stated in a report dated 28 September 2015 that Miss QMI's neurovascular situation is as stable as it will ever be. Miss QMI would be managed postoperatively with aspirin therapy and by avoiding dehydration and major swings in her blood pressure. Associate Professor U stated that the treating team will ensure that Miss QMI's particular medical and psychological problems are managed well. The doctor is of the view that Miss QMI's perioperative risks are justified and he supports Miss QMI proceeding to have a hysterectomy. 7. Dr T, Endocrinologist, stated in a report dated 9 February 2016 that Miss QMI's hormonal therapy to control her menstrual cycle is a far greater risk for her than an elective hysterectomy. The views of Ms Tijana Jovanoic, separate representative 1. Ms Tijana Jovanovic supported the application for special medical consent. She stated that Mrs LMI being the 'person responsible' for Miss QMI seeks that the procedure take place so that Miss QMI does not continue to experience significant distress and anxiety when bleeding. Ms Jovanovic submitted that the legislative requirements for the Tribunal to consider have been met. She stated that the operative procedure will prevent serious damage to Miss QMI's health in view of the impact that the bleeding has upon Miss QMI. All other methods to deal with the bleeding have either been ineffective or are unsuitable. Is the proposed treatment the most appropriate form of treatment for promoting and maintaining Miss QMI's health and well-being? 1. There is ample evidence that Miss QMI suffers from distress and increased anxiety whenever she experiences menstrual or breakthrough bleeding. Strategies to deal with Miss QMI's distress during times of bleeding and menstruation have been attempted but not been successful. The Tribunal is satisfied that reducing Miss QMI's distress and anxiety by preventing menstrual and breakthrough bleeding would assist in promoting and maintaining her health and well-being. 2. Miss QMI has complex health care needs. She has Moya Moya disease which increases her risk of stroke and impacts on the medical options for controlling menstruation and breakthrough bleeding. Miss QMI's already high-risk of stroke would be further increased by the use of oestrogen containing medications. Standard formulations of the pill, commonly used to control menstrual and breakthrough bleeding, are in Miss QMI's case, contraindicated. Miss QMI's pelvic anatomy has been assessed as unsuitable for procedures such as insertion of a Mirena IUD or endometrial ablation. Miss QMI has used progesterone containing tablets (Provera) and injections (Depo Provera) to suppress menstrual bleeding, but still has frequent and distressing episodes of breakthrough bleeding. Miss QMI has not tried the progesterone implant (Implanon), however the Tribunal accepts that this would not be an appropriate form of treatment to prevent Miss QMI's bleeding as it accepts Dr CYM's expert evidence that with Implanon the likelihood of some bleeding persisting is about 80%. 3. The operative procedure of an abdominal hysterectomy is proposed for Miss QMI to stop her from experiencing breakthrough and menstrual bleeding. This is invasive and irreversible surgery which is major and special medical treatment and requires a general anaesthetic. For Miss QMI, some risks are greater than for the standard patient, however the professional opinions are that these risks can be safely managed and that the benefits to Miss QMI of hysterectomy outweigh the risks. Alternative and less invasive procedures to stop bleeding have failed or are not likely to be effective or are unsuitable. 4. Miss QMI's medical conditions and anatomy mean there is no appropriate options to prevent menstrual and breakthrough bleeding apart from hysterectomy. The Tribunal is satisfied that the proposed procedure is the most appropriate treatment which will promote and maintain Miss QMI's health and well-being as the procedure will be effective in stopping Miss QMI from experiencing menstrual and breakthrough bleeding. Is the proposed treatment necessary to save Miss QMI's life or prevent serious damage to her health? 1. The Guardianship Act prescribes stringent conditions in determining an application for special treatment of this kind. The Tribunal must not consent unless it is satisfied that the proposed treatment is necessary to save Miss QMI's life or prevent serious damage to her health. It was not submitted that the proposed treatment is necessary to save Miss QMI's life. The Tribunal therefore must decide whether the proposed treatment is necessary to prevent serious damage to her health. 2. Miss QMI experiences significant anxiety and frustration and exhibits challenging behaviours when there are trigger factors in her environment. The Tribunal infers that menstrual and breakthrough bleeding are one such trigger for Miss QMI as the evidence is that there is a clear link between Miss QMI's high levels of distress and anxiety and her bleeding. Miss QMI continuously and persistently expresses her distress and anxiety about menstrual and breakthrough bleeding and this distress and anxiety at the time of bleeding is increasing as she becomes older. 3. Because of Moya Moya syndrome Miss QMI lives with the ever present risk of stroke. The Tribunal accepts Ms Z's evidence that keeping Miss QMI calm and stress free is necessary to prevent an increase in her already high-risk of stroke or other neurological events. 4. The Tribunal is satisfied that Miss QMI's psychological health is significantly affected by increased levels of anxiety at times of menstrual and breakthrough bleeding. In reaching this conclusion the Tribunal considered the reports of Ms Z, Clinical Psychologist, and found Mrs LMI's evidence to be most relevant and persuasive. The Tribunal notes with particular concern Mrs LMI's evidence regarding her daughter's self-harm tendencies at these times and that Miss QMI, in response to bleeding, was seeking to "cut it out" with a kitchen knife. The Tribunal also considered that Miss QMI's extreme distress at any bleeding, her withdrawal from social contacts and activities and her day program contribute to significant damage to her psychological health. 5. The Tribunal is required to determine whether the proposed surgical procedure is necessary to prevent serious damage to Miss QMI's health. Dictionary definitions of 'serious' include weighty, important and significant. The impact of the bleeding upon Miss QMI's life and welfare and well-being is serious and ongoing. Miss QMI's distress and anxiety when bleeding is significant, persistent, continuous, and marked. Miss QMI is becoming more anxious and distressed with each bleed and the distress is lasting for longer. The Tribunal is satisfied that ongoing menstrual bleeding will cause significant damage to Miss QMI's psychological health. 6. Miss QMI's health condition is complex and episodes of increased anxiety increase her already high stroke risk. Because the anxiety Miss QMI experiences in response to bleeding increases her risk of stroke, the Tribunal accepts that the bleeding itself results in an increased risk of stroke and so is serious risk to her physical health. 7. The Tribunal is satisfied that the surgical procedure proposed, being the most appropriate way to prevent bleeding, is necessary to prevent serious damage to Miss QMI's health. The Tribunal has considered the matters set out in s 42(2) of the Guardianship Act. The Tribunal decided to consent to the application for special medical treatment. ********** 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: 17 May 2017