EKF [2017] QCAT 434

CITATION: EKF [2017] QCAT 434 PARTIES: EKF APPLICATION NUMBER: GAA4254-17 MATTER TYPE: Guardianship and administration matters for adults HEARING DATE: 30 August 2017 HEARD AT: Brisbane DECISION OF: Member Gardiner Dr Stafford, Member DELIVERED ON: 30 August 2017 DELIVERED AT: Brisbane ORDERS MADE: 1. The Tribunal consents to sterilisation of EKF by total hysterectomy with preservation of ovaries. 2. This consent remains current for six (6) months. CATCHWORDS: GUARDIANS, COMMITTEES, ADMINISTRATORS, RECEIVERS AND MANAGERS – OTHER MATTERS – where application for consent to special health care – sterilisation – where adult has a genetic disorder and severe intellectual impairment – where adult’s parents are the primary carers – where the adult has severe problems with menstruation – where alternative forms of health care – where the nature and extent of significant risks of proposed and alternative forms of health care – whether sterilisation is necessary to preserve the adult from serious danger to her life or physical or mental health Guardianship and Administration Act 2000 (Qld), s 70 -- 1 of 7 -- 2 APPEARANCES: PARTIES: EKF’s parents EKF’s treating gynaecologist Representative for the Public Guardian REASONS FOR DECISION [1] This is an application to the Tribunal for the making of consent to a special health care application for EKF. The special health care application is for sterilisation and under section 70 of the Guardianship and Administration Act 2000 (Qld) (the Act). The Act sets out a number of bases upon which this Tribunal can consent to sterilisation and we will go through those issue by issue. [2] By way of background, EKF is a 24-year-old lady who suffers from Cri du Chat syndrome which is a genetic disorder causing a number of physical abnormalities, as well as severe intellectual impairment. She has limited communication skills, and has been assessed as having an intellectual age of about a seven-year-old child. She is able to answer simple direct questions using short sentences and, as a result of her intellectual impairment, EKF requires assistance with most of her personal and hygiene needs. [3] EKF resides in her family home with her mother and father. She is a friendly woman who enjoys outings and watching movies, train rides and shopping. Her parents are her primary carers, and she receives support through a not- for-profit community-based organisation who assist to take EKF on outings seven days a fortnight. She also attends a home respite two nights a month when she is well. [4] As part of the consideration by the Tribunal of this very important decision concerning EKF, on 27 April 2017 the Tribunal made an order appointing the Public Guardian as EKF’s separate representative, pursuant to section 125(1) of the Guardianship and Administration Act 2000 (Qld). Under this section, the representative is appointed to represent the adult’s views, wishes and interests at this hearing of this special health care application. [5] The first matter that the Tribunal must consider when looking at any application is EKF’s ability to make these decisions for herself or the issue of capacity as defined in schedule 1 to the Guardianship and Administration Act 2000 (Qld). The general principles require that she is presumed to have capacity for the matter – general principle 1 – and that must be rebutted. While there is no definition of incapacity, there is, within the Act, a definition of capacity, and that has three elements: understanding the nature and effect of decisions about a matter, freely and voluntarily making those decisions, and communicating them. -- 2 of 7 -- 3 [6] In this regard, we have had evidence from the doctor who has treated EKF for all of her life. He points out that she does have the genetic disorder that I have already referred to which causes some physical abnormalities, although the evidence is that she is on the lighter end of the physical abnormalities that can arise from this genetic disorder. But the doctor opines that she has severe intellectual disability, and he puts her age intellectually at its highest at seven. The separate representative points out, after interactions with EKF, that she can answer simple, direct questions. [7] The issue of sterilisation as a special health matter is a very complex health issue. It is very clear from the material provided to us in the doctor’s report, and also supported by all of the parties, including EKF’s gynaecologist, that she does not have the ability to make these very complex decisions, and that the presumption of capacity, we are satisfied, is rebutted. [8] The issue of the special health application itself is covered by section 70 of the Guardianship and Administration Act 2000 (Qld), and that section outlines the circumstances under which the Tribunal may consent to sterilisation of an adult who is found to have impaired capacity. It sets out a number of circumstances in which consent may be given and, in particular, for EKF, under section 70(1)(a), the subsection that applies for EKF is that as she is female, she has problems with menstruation and cessation of menstruation, and sterilisation is the only practicable method to overcome these problems. There are further issues under section 70 but I will deal with them as we move through it. [9] The first issue that needs to be taken into account under that section is whether practically, sterilisation is the only way to overcome her problems. EKF began menstruating at the age of 12 but she has not been able to tolerate the sight of blood. It is apparent from the evidence before us that that is any blood of any sort that comes with menstruation. Her mother, EKU, gave evidence that EKF can abide the sight of blood where she can see where it comes from, for example, if she has cut her finger. It is the unknown source that seems to be the problem with her menstruation. [10] EKF was originally commenced on a combination of the oral contraceptive pill, and then later Implanon to manage the flow and to minimise the amount of blood she would see. EKF is required to use incontinence aids and when she is menstruating and she refuses to go to the toilet for fear of seeing the blood. She will hold her urine for long periods, and when she does relieve herself, she is incontinent. She resists her pads being changed as she cannot tolerate the sight of blood, and becomes anxious and physically aggressive towards her mother. EKU says this is a very difficult period for the whole family. She will only let her mother change her pads, and for the time of her period, she will not engage in social outings. That means her respite care and her social outings effectively do not happen. [11] EKF continued with Implanon and the oral contraceptive pill from about 2005 to about 2015 when her bleeding became heavier and the Implanon was replaced. While some of these were initially able to reduce the flow of -- 3 of 7 -- 4 the blood, and her gynaecologist makes the observation that the flow is not a heavy flow, it is just that EKF cannot deal with the sight of any blood, even minor amounts. The bleeding continued despite the later use of the Implanon and that was replaced in October 2016 with a Mirena IUD which was inserted under a general anaesthetic. [12] The Mirena remained implanted for about four months until it was removed in February 2017. EKF currently remains with the Implanon rod as the only form of contraception. The Mirena caused significant problems for EKF including unbearable pain requiring admissions to the emergency department of her local hospital for investigations and administration of quite strong pain relief; Endone, for example. [13] The Mirena did not cease the menstruation and EKF continued to suffer breakthrough spotting which continued to cause her anxiety and distress, and she forewent her usual social outings through this time. The Implanon was reinserted in February of 2017 when the Mirena was removed. She continues to have this anxiety and aggressive behaviours. [14] When the Separate Representative asked EKF about her period, the delegate reports that EKF’s demeanour changed from happy and excitable, and she appeared upset when she replied, “Not clean, pain.” The delegate asked EKF if she knew of the proposed procedure, being a hysterectomy to stop her periods, and what she thought of this to which she said, “Good. Have a sleep” and she laughed. Her parents also say that in their discussions with her that she clearly thinks stopping the blood altogether is something that she wants. [15] EKR and EKU are the sole support, and clearly loving parents for their daughter. EKU says that they have become increasingly concerned for their daughter as her anxiety and physical aggression resulting from the sight of her menstrual flow have been escalating. EKR and EKU have explained that they have tried numerous methods and combinations of management since their daughter began menstruating at the age of 12 to manage her flow. They describe the pain and discomfort that they watch their daughter endure during the four-month period that the Mirena was inserted and how she has, in their view, basically been through enough. [16] EKU is the only one that EKF will allow her to attend to her personal hygiene, and it is becoming more and more of a struggle every month. She describes how EKF refuses to use the toilet at all and she does not want to see the blood, and she is required to use incontinence pads during this period. EKU has great concern for her daughter’s health by refusing to urinate, and that this can cause infections and other health repercussions. [17] EKF’s parents describe how her menstruation affects her ability to attend outings she would normally enjoy. They say she would either refuse to go, or she would go out and come home soiled, as she would not allow support staff to assist her with personal hygiene. EKU explains that her daughter does suffer pain while menstruating, and that she is able to communicate this to her mother, and would take paracetamol as required. -- 4 of 7 -- 5 [18] EKR and EKU have consulted with her gynaecologist at their local hospital for a permanent solution because, in their view, that time has come for these distressing menstrual problems. They both agree that the proposed hysterectomy to permanently cease her menstruation is in the best interest and is their last resort. EKF’s treating gynaecologist proposes and supports a total laparoscopic hysterectomy with the preservation of the ovaries as the last resort procedure to improve EKF’s quality of life, and to overcome in any practical way the problems that are currently occurring through menstruation. She reiterated to the tribunal the history that I has been outlined, concerning the use of other contraceptive devices. [19] The tribunal did discuss with her the endometrial ablation as one procedure that has not been tried. But EKF’s treating gynaecologist did say that she had spoken to her colleague, who in a letter to the tribunal, also supports the hysterectomy as the way forward for this young woman. [20] Their view is that the ablation would not last as a permanent solving of the blood flow because she is so young, that it might need to be repeated because the endometrial tissue would regrow during her time before she reached the point where the periods would stop naturally. So having consulted with her colleague, and having both considered the matter, they are both of the view that the hysterectomy is the way forward. [21] The sterilisation cannot reasonably be postponed; it is clearly causing EKF substantial distress, and interrupting considerably her way of life. She is certainly unlikely in the foreseeable future, because of her intellectual disability, to have the capacity for decisions about sterilisation, and these are all the factors that are listed in section 70(1)(a), (b) and (c). [22] Moving on, section 70(3) also requires that in deciding this matter, the tribunal must take into account alternative forms of healthcare, including other sterilisation procedures available, or likely to become available in the foreseeable future. [23] To a large extent those matters are already covered in the reasons I have given under other sections. It is unlikely that the reintroduction of the Mirena and the current use of the Implanon completely ceased the blood flow. It is known with all of these hormonal treatments that, as the hormone runs out, the likelihood of spotting increases. The experience is that she is unable to physically deal with the further introduction of a Mirena IUD. [24] Having dealt with the reasons why the doctors declined, as a matter of clinical opinion, to undertake the ablation process, it is our view that there are now no alternative forms of sterilisation procedures that are available. On the evidence of EKF’s treating gynaecologist today, she is not aware of that are likely to become available in the foreseeable future, again having discussed the endometrial ablation as the only option that has not been physically tried for EKF. [25] The final subsection of subsection 3 requires that the tribunal consider the nature and extent of short and long-term significant risks associated with -- 5 of 7 -- 6 the proposed procedure, and any available alternative forms of healthcare, including other sterilisation procedures. I do not propose to consider again, as we are satisfied that in these reasons we have covered the available alternative forms of healthcare, and concluded that those have been tried unsuccessfully for EKF. In terms of short and long-term risks, EKF’s treating gynaecologist opined to us at the hearing that there are some risks associated with the surgery itself and the general anaesthetic, but that EKF has successfully undertaken a general anaesthetic recently. Having spoken to the anaesthetist who treated her at that time, he foresees no particular risks for her associated with her genetic condition that might cause any short-term problems under a general anaesthetic. The operation itself does carry risks of blood clots, bleeding and infection, but all of these things can be controlled by antibiotics or practical procedures taken after the operation; for example, pressure bandages. [26] EKF is a young woman who is physically able to deal with an operation, as has happened in the past and EKF’s treating gynaecologist opines that she is a good surgical candidate for a hysterectomy, that her overall risk of complications from this operation is low, and that on balance the benefits from the operation far outweigh the risks. In terms of long-term issues, EKF’s treating gynaecologist raised that in women who have had child birth, there are some risks, but as it is not going to be an issue for EKF, she had discounted that possibility. Because her ovaries will be retained, the issue concerning osteoporosis or hormonal matters is considerably lessened. [27] EKF’s treating gynaecologist did say that EKF may enter menopause three years earlier because of this but that is, again on balance, a risk that is outweighed by the benefit between now and menopause for the operation that she’s about to undertake. The doctor said that if it had have been flow reduction that this operation was intended to fix, there might have been other things that could have been tried, but that it is not the case on the evidence before us. The issue for EKF is the sight of any blood at all, not necessarily the quantity, and we accept that evidence. There is nothing that the doctor is aware of that could satisfy alternative procedures in the future. [28] Overall, we are satisfied by all the opinions we have seen. The detailed evidence that EKF’s treating gynaecologist has given is supported by her colleague. He says EKF has very disabling periods, and that in his view, all hormonal treatments available have failed, that ablation is considered by the gynaecologist to likely fail as well, and that he comments how distressing the periods are, and that in his view. EKF understands that the operation would stop her periods and that she is overjoyed when this is mentioned. This operation is also supported by her long-term medical advisor. [29] The Associate Professor, also a specialist, agrees with all of the evidence given by EKF’s treating gynaecologist, and opines that the Merina would not be tolerated well and should not be reinserted, that the ablation has some prospects of failure because of her youth, and that the hysterectomy is really the only option for long-term relief. He supports this option. -- 6 of 7 -- 7 [30] The report of the Public Guardian identified a number of matters to be considered, and most of them we have dealt with already: her frequent and heavy periods; her inability to manage her hygiene; and her distress at the sight of blood. Her physical aggression and distress. She is really unable to manage her periods, and that this interrupts substantially with her lifestyle and she is unable to engage in activities, that she is incontinent of urine when she’s menstruating, and her reactions to that have been spoken of earlier. [31] The recommendations of the separate representative are that other less intrusive hormonal therapy options have been explored and have not been effective. The doctors fully support what is being proposed, and it is the recommendation from the separate representative as the independent representative for EKF, that consent be given by the tribunal to this operation. [32] Having considered all of the matters, having been satisfied that EKF does not have the capacity to make these decisions for herself, we will today consent to the operation. The formal order of the tribunal will be that the tribunal consents to the sterilisation of EKF by total hysterectomy with preservation of ovaries, and that this consent remains current for six months. -- 7 of 7 --