CEN
[2012] QCAT 387
| CITATION: | CEN [2012] QCAT 387 |
| PARTIES: | CEN |
| APPLICATION NUMBER: | GAA5514-11 |
| MATTER TYPE: | Guardianship and administration matters for adults |
| HEARING DATE: | 28 February 2012 |
| HEARD AT: | Brisbane |
| DECISION OF: | Ron Joachim, Presiding Member Dr Rosemary Stafford, Member |
| DELIVERED ON: | 20 June 2012 |
| DELIVERED AT: | Brisbane |
| ORDERS MADE: | 1. The Tribunal consents to the sterilisation of CEN by laparoscopic tubal ligation. |
| CATCHWORDS: | SPECIAL HEALTH CARE – STERILISATION – Where parents seek laparoscopic sterilisation of adult daughter with intellectual disability – where Adult Guardian appointed representative – where parents and adult have separate advocates – whether adult has capacity to consent – whether adult is or is likely to become sexually active – whether mirena represents successful method of contraception Guardianship and Administration Act 2000, ss 70, 125, Schedule 4 |
APPEARANCES and REPRESENTATION (if any):
CENThe Adult
CAR, CBJParents
CH, CC, WM, BR Other family members
BMAdvocate, TASC
MK, MT, DCQADA
REASONS FOR DECISION
Background
CEN lives in supported accommodation. She has an intellectual disability and is supported by the St Vincent De Paul service.
The Tribunal has, over the years, received and disposed of a number of applications in relation to CEN. There is a current order of the Tribunal which appoints CEN’s parents, CAR & CBJ, jointly and severally as guardians for decisions about accommodation and services. That order was made on 15 November 2011. The Tribunal, at that time, also appointed the Adult Guardian as guardian for CEN to make decisions in relation to health care and legal matters not relating to her finance or property. Both appointments are for a period of 1 year.
Prior to the last appointment, the Tribunal received an application on 24 June 2011 from CEN’s parents for the Tribunal to consent for special health care for her, namely sterilisation. This application was accompanied by a range of health professional reports which will be discussed later.
CEN’s parents, CAR & CBJ, have been supported by The Advocacy and Support Centre (TASC). The Queensland Aged and Disability Advocacy (QADA) have provided advocacy support to CEN in respect of the application.
On 6 January 2012 the Tribunal appointed the Adult Guardian as separate representative for CEN under section 125 of the Guardianship and Administration Act 2000 (the Act). Prior to this the applicants had been directed to file certain statements in the Tribunal.
The Tribunal conducted a hearing on 28 February 2012 in relation to the application and adjourned the hearing pending the receipt of submissions from the parties including further reports from Dr Esler, the gynaecologist who was to perform the procedure if approval was granted and from a psychologist, Dr Seaton, who is providing counselling and assisting CEN to develop her interpersonal skills.
Following the receipt of these submissions and reports, the Tribunal requested further submissions relating to the likelihood of CEN becoming sexually active.
The relevant legislation
Section 70 of the Act outlines the circumstances under which the Tribunal may consent to sterilization for an adult with impaired capacity. One of the following three circumstances must apply;
§Either the sterilisation is medically necessary, or
§The adult is likely to be sexually active and there is no method of contraception that could reasonably be expected to be successfully applied, or
§In the case of an adult female there are difficulties with menstruation and cessation by sterilisation is the only practical way of overcoming the problems.
The Tribunal also has to be satisfied that the sterilisation can not reasonably be postponed and the adult is unlikely in the foreseeable future to have capacity for decisions about sterilisation.
Subsection 3 outlines the other matters the Tribunal must take into account. These include the likelihood of alternative forms of health care including other sterilisation procedures becoming available in the foreseeable future and the nature and extent of significant risks associated with the procedures.
Capacity is defined in schedule 4 of the Act. For an adult to have capacity in respect of the sterilisation procedure, the adult needs to understand the nature and affect of decisions about the sterilisation, be able to make decisions freely and voluntarily and be able to communicate the decisions in some way.
Section 125 of the Act makes provision for the presiding member to appoint a representative to represent the adult’s views, wishes and interests in circumstances where the adult is not represented or, where the adult is represented, the presiding member considers this person to be inappropriate to represent the adult’s interests.
The issues to be determined
The first matter that the Tribunal needs to consider in this matter is CEN’s capacity to understand the nature and affect of the procedure, whether she can make the decision freely and voluntarily and her ability to communicate the decision in some way.
The other matters that the Tribunal needs to take into account are the various matters outlined in section 70. In CEN’s case the limb on which the parties agreed was the only limb to be considered by the Tribunal was whether CEN is or is likely to be sexually active and there is no method of contraception that could reasonably be expected to be successfully applied.
The Tribunal also needs to take into account risks and alternative forms of health care likely to be available in the future.
Does CEN have capacity to make a decision regarding sterilisation?
The Tribunal has a wealth of material from health professionals in relation to CEN’s ability to make decisions. CEN’s general practitioner, Dr Rosaleen Jolley, provided a report to the Tribunal indicating that CEN has Asperger’s syndrome and mixed depression and anxiety. She advised the Tribunal that CEN says the whole procedure of sterilisation has been explained to her but she gets very confused. Dr Jolley advised that CEN has limited ability to understand the consequences of her action but after a thorough discussion of tubal ligation, she does understand that the operation would be performed to prevent pregnancy. Dr Jolley went on to say that CEN requires 24 hour care and guidance in lifestyle and accommodation choices. She notes that she is positively influenced by her parents and carers. She does not believe that CEN is capable of complex decision making as a result of her intellectual disability.
Dr Prebble is a paediatrician who has known CEN for some 26 years. He also notes CEN’s intellectual disability and Asperger’s syndrome in a report he provided to the Tribunal. He notes that CEN has limited comprehension and understanding and likewise considers she is only capable of making simple but not complex decisions.
Another general practitioner, Dr Anthony Coetzee, provided a brief letter to the Tribunal indicating that as a result of CEN’s intellectual disability she is unable to make appropriate decisions regarding self care, problem solving and interpersonal relations and has no insight into the consequences and responsibility of having a child and would be totally incapable of mothering and looking after the infant. He also noted she is on long term medication that may have an adverse affect on the foetus while she is pregnant.
Dr Pamela Seaton, a clinical psychologist, who has known CEN for 4 years and 9 months provided a report to the Tribunal in relation to CEN’s capacity. She noted that CEN had diagnoses of Asperger’s syndrome and intellectual disability. She also noted that everyday situations such as relationship, health and financial issues are dealt with by CEN in a highly emotionally reactive manner as her mood and anxiety level fluctuate widely.
She stated that in a 1 on 1 situation CEN appears to understand information provided. However, she quickly forgets this information in decision making contexts. She noted that CEN’s memory deficits make it difficult for CEN to learn from past experiences and consequently she displays little appreciation for the consequences of her actions or decisions she makes. She indicates that CEN’s executive functioning is significantly compromised which impacts on her ability to select relevant information, store it in working memory, inhibit impulsive behaviour, organise and manipulate relevant information.
Despite many years of psycho-social education, Dr Seaton considers that CEN has no real understanding of how relationships develop. Dr Seaton also states that CEN is very socially naive and is unable to understand other peoples’ intentions. Dr Seaton noted that CEN has an obsession with men and due to her poor insight, her capacity to truly appreciate the implications and consequences of developing relationships is reflected in her persistent inability to act on choices she has made in educational and counselling sessions. Like the other health professionals she indicates that CEN is unable to make complex decisions.
She also indicates that CEN is unable to make simple decisions unless she is supervised and cued by a carer.
At the hearing MK from QADA commented that CEN can be easily influenced, is very conscious of her parents’ views and wishes to please them.
CEN advised the Tribunal she would get 3 little cuts from the procedure so she can’t get pregnant and have babies. She does not want to have babies. She also wants the operation because the mirena is too much trouble and too much to handle. She also thought she would be a couple of weeks in hospital.
The Tribunal is satisfied that CEN does not understand the nature and effect of the procedure proposed except on a most superficial basis. She understands that the procedure will stop her from having a baby but she does not have any understanding of the potential risks or side affects. She does not have an understanding of the details of the procedure and she does not have an understanding of post operative care needs.
The Tribunal is also concerned that CEN is subject to the influence of others who have an interest in this matter. It appears to the Tribunal that CEN has a strong desire to please people particularly her parents who are a very important element in CEN’s life. CEN knows her parents wish her to have this procedure done and CEN herself has expressed her strong view that she wishes the procedure to be done.
The Tribunal has concluded that CEN does not have capacity to consent to her sterilisation by tubal ligation.
Section 70 requirements
As noted earlier the Tribunal needs to be satisfied of one of three matters. Either that the sterilisation is medically necessary or that CEN is likely to be sexually active and there is no method of contraception that could reasonably be expected to be successfully applied or there are problems with menstruation.
There is no evidence before the Tribunal that the sterilisation is medically necessary. Likewise there is little evidence before the Tribunal that CEN has problems with menstruation and that cessation of menstruation by sterilisation is the only practical way of overcoming the problem. In one of Dr Prebble’s letters he states that he is advised that CEN does become anxious at period times, has difficulty caring for herself appropriately and is upset. None of the parties at the hearing raised this as an issue.
Likelihood of being sexually active
The Tribunal is therefore left with the second limb to consider.
Evidence from the applicants was to the effect that when CEN was with a previous service provider she was often left on her own. On one occasion she had been taken to a young man’s home and was shown graphic material.
The applicants further advised that CEN does not display normal inhibitions and has made false accusations about men in a sexual context.
They advised that some time ago, a young man suggested removal of the mirena so CEN could have a baby.
CEN advised the Tribunal that she likes some boys but doesn’t think she will have sex. She said she used to want to have sex all the time.
MK opined that there is no evidence that CEN is sexually active nor is likely to be.
The Adult Guardian noted that no one can confirm whether CEN is in a sexual relationship at present.
The Tribunal was advised that CEN has had boyfriends in the past and CEN’s support network is hoping she will develop normal relationships as she may become more independent in the future.
The Tribunal sought specific submissions from the parties in relation to the issue of whether CEN is or is likely to be sexually active.
Dr Seaton advised that, although CEN has 24 hour support, her support workers are there to assist with CEN’s ability to engage in normal everyday activities as much as possible and to be as least restrictive as possible. She further commented that this therefore does not restrict CEN from engaging in normal relationships, sexual or otherwise. She also opined that CEN, as well as having the right to experience sexual relationships, also has the right to experience failed relationships. She noted that CEN’s support workers have to date been able to protect her from potential high risk situations with adult males particularly when she lapses into obsessive states about having boyfriends. She states that CEN’s support workers do not and will not discourage the development of normal relationships.
In respect of sexual activity to date, Dr Seaton advised the Tribunal that to her knowledge CEN has not had sexual intercourse to date but has participated in normal heavy petting. She stated that CEN has consistently expressed the desire to eventually experience a long term intimate and sexually active relationship with a male partner. She advised that therapy sessions have included a greater focus on assisting CEN with normal relationship development and these sessions have been framed from the point of view of preparing her for a future sexual relationship.
She noted that CEN’s new premises will also eventually provide her with more privacy when she chooses to engage in a future sexual relationship which she believes is very likely in CEN’s case.
The submission from TASC on behalf of the applicants make the following points:
§While it is true that CEN is closely monitored and in 24 hour care she is not a prisoner of her service provider.
§The primary aim for CEN is to gain confidence and exercise her human rights to live life to her fullest capacity and potential.
§The service provider has a range of protocols to allow privacy to CEN in her home and encourages social interaction such as entertaining friends and family in her home.
The submission notes that:
§CEN has recently moved to new accommodation on her own and is even less restricted in sharing her accommodation with flatmates as was the case previously. The service provider worked closely on recommendations with professional psychologists to support CEN in the freedom to interact with male company. CEN already has a number of low level supervised outings to her drama group 3 hours per week. This group is a mixed gender group that develops drama skills and produces a production once per year.
§CEN attends monthly dances for 3 hours and these dances, whilst supervised, allow contact and some privacy to participants to advance social interactions. It is CEN’s wish to develop a couple style relationship that is enduring. CEN’s new environment will assist her to make choices and exercise her right to engage in sexual activity.
The Adult Guardian submitted that given CEN’s tendency to obsess about boyfriends and about sexual relations, it could be concluded that given the opportunity in the company of an adult male or her boyfriend unsupervised, CEN would engage in sexual intercourse. The Adult Guardian further submitted that if she continues to be closely supervised and is not given an opportunity to be alone with a male then it is unlikely she will become sexually active.
The Adult Guardian further submitted that, given there is no verifiable evidence to suggest that CEN has had sexual intercourse, it does not suggest that she may not become sexually active at some stage in the future.
QADA’s submissions were that the current application does not establish to the requisite standard of proof that CEN is or is likely to be sexually active nor that there is no method of contraception that could reasonably be expected to be applied. QADA submits that it is not clear from Dr Seaton’s advice the basis on which she reaches the conclusion that CEN is very likely sexually active in the future.
It is QADA’s understanding that CEN is not permitted to spend time with males unsupervised or to have males in her home. QADA submitted it is not a new development in Dr Seaton’s working with CEN to encourage her to develop an appropriate sexual relationship but noted that this has not previously led to a sexual relationship developing between CEN and her boyfriends. QADA further noted that if anything changes in the future which could impact on the likelihood of CEN becoming sexually active a further application for consent to special health care could be made at that time.
Other methods of contraception
The second limb of section 70(1)(a)(ii) is that the Tribunal needs to be satisfied there is no method of contraception that could reasonably be expected to be successfully applied.
The applicants advised in a letter dated 10/08/11 of the following:
·Dr Woodward prescribed the oral contraceptive for CEN, however she experienced severe mood swings and considerable weight gain.
·Subsequently Dr Woodward prescribed the Implanon rod in her arm. CEN picked and scratched at the skin which became infected and the rod had to be removed.
·Following this the mirena was inserted.
Dr Prebble, in a letter of 13/4/11 to Dr Esler noted “she has tried the oral contraceptive” but this resulted in significant and serious weight gain.
Evidence was also given that depo provera had not been used as a method of contraception as CEN had an aversion to needles.
For several years now CEN has had a mirena inserted under general anaesthetic as a contraceptive device.
Dr John Esler, a gynaecologist, is proposing that CEN have a laparoscopic procedure to effect her sterilisation.
The Tribunal directed the applicants to obtain a report from a specialised gynaecologist and obstetrician other than Dr Esler as to whether sterilisation is medically necessary or the only method of contraception that could reasonably be expected to be successfully applied in CEN’s case.
Dr Anthony Cerqui, a gynaecologist, subsequently reviewed CEN on 23 November 2011. He noted that the mirena coil had been inserted for some time and is due for removal. He further noted that whilst the mirena is in place CEN has not had periods although now towards the end of the mirena’s life expectancy she is now starting to do so. Dr Cerqui also indicated he did not undertake a physical examination. Dr Cerqui states, “certainly the Tubal Ligation will afford contraceptive protection however everyone will need to be aware that CEN is then going to be in a position where she has to deal with her menses as well. One may find that although the Tubal Ligation deals with issues regarding contraception, she is then in a position where she has these problems with her menses and is then looking at undertaking management strategies to deal with them. She may be wiser to consider insertion of a mirena coil every 5 years as this will have the dual advantage of contraception and based on past performance would appear it will render her amenorrhoeic”. He concludes, “in short her carers have to decide whether they want to proceed with Tubal Ligation and have potential issues regarding to her resuming menstruation or alternatively insert the mirena providing contraceptive certainty and likely to render her amenorrhoeic and negate any issues with periods. Certainly the latter would appear most sensible to my mind.”
The use of the mirena has not been without its difficulties. Its use goes to the question of whether there is any other method of contraception that could reasonably be expected to be successfully applied.
At the hearing CEN herself gave evidence that she finds the mirena is uncomfortable from time to time and she becomes anxious quite regularly that it has been dislocated. Evidence provided by parties at the hearing confirm this and that CEN was taken to her general practitioner in regards to this on a regular basis. As a result of these consultations CEN was regularly having ultrasounds to determine whether the mirena had been dislodged. To date, this had not been evidenced. CEN wishes to have a permanent resolution. CAR advised the Tribunal that CEN is extremely anxious about the mirena being dislodged.
Dr Cerqui attended the hearing for a brief period by phone. He noted that the mirena needs to be replaced every 5 years and CEN’s is now overdue for replacement. He advised that it requires a GA and there is not an excessive risk.
Dr Cerqui further advised the mirena is a very reliable form of contraception. He noted it is not easy to remove. Dr Cerqui indicated the mirena could cause discomfort.
He advised the Tribunal that tubal ligation was slightly more reliable than a mirena, required a once off GA and outlined possible complications including a risk to the bladder and blood vessels, and a 1 in 100,000 chance of bowel damage occurring. He noted there may be heavy periods following the procedure.
Dr Cerqui further advised that a displaced mirena would have to be resited.
Both MK and the Adult Guardian advised that CEN has made it very clear she wants the operation as a result of her anxiety about the mirena.
Following the hearing on 28 February the Tribunal made directions which included that Dr Esler provide advice to the Tribunal regarding the relative advantages and disadvantages of the mirena coil and Tubal Ligation for CEN and to specifically comment on Dr Cerqui’s letter of 23 November 2011. Dr Esler provided a response to this by letter dated 21 March 2012 in which he notes there are numerous alternatives available to CEN with respect to contraception. He does not outline these. He notes that the significant concerns he has about the mirena are that CEN would require a GA to insert and subsequently remove and replace the device requiring a GA every five years.
Dr Esler also noted there is a well known risk of infection associated with any intra uterine device and clearly assessment and diagnosis of this would be extremely difficult in this situation.
He concluded with a statement that sterilisation carries with it the lowest risk of failure and would require only 1 anaesthetic to achieve the desired result.
In a report from Dr Seaton dated March 2012 she states that CEN has been unhappy and anxious about her current contraceptive method since she has known her. This has manifested itself with CEN becoming obsessive and highly anxious. Dr Seaton notes that when CEN’s stress and anxiety becomes elevated she is prone to impulsive behaviours which have included absconding, aggressive behaviour, and suicidal ideation. She notes this places CEN at an increased risk of escalating mental health problems such as elevated anxiety and reoccurrence of depressive symptoms.
In a final submission from the applicants, they state that one of the issues that has been raised in their submissions and substantiated by CEN’s professionals is the heightened anxiety that CEN has with the fixation on her mirena failing. This causes continued expensive and unnecessary medical examinations and ultrasounds in themselves risks to CEN. They further state, “given all the advantages of medical interventions to regularly placate her fears, the costs and exposure to anaesthetics as well side affects of the implant, it is clear that in her circumstances a permanent 1 time procedure is the solution for CEN. This also removes any possibility of tampering and a pregnancy that she would not endure on physical, mental or psychological grounds.” They consider that CEN will be greatly settled knowing that the procedure of Tubal Ligation will remove much of her anxiety and behaviours associated with the mirena.
QADA in a submission to the Tribunal in March 2012 addressed the issue of whether there is no method of contraception that could reasonably be expected to be applied. MK notes Dr Esler’s advice regarding numerous alternatives.
QADA suggest that given CEN’s age she may only require a further 3 or 4 mirenas before reaching menopause. The Tribunal takes this to be a comment in respect of the concerns regarding the use of general anaesthesia.
MK concludes that QADA are mindful that this is not an exercise in weighing up the pros and cons of the mirena and sterilisation but of establishing that there are no methods that can be reasonably be expected to be applied in this case. She submits that “Marion’s case sets out that sterilisation is only to be considered where all other procedures or treatment are, or have proved, inadequate in the sense that they have failed or will not alleviate the situation so that CEN can lead a life in keeping with her needs and capabilities and that sterilisation is to be a step of last resort.”
The Tribunal’s view
The Tribunal must be satisfied as to whether CEN is or is likely to be sexually active and there is no method of contraception that could reasonable be expected to be successfully applied.
Evidence is that it is highly unlikely that CEN has had sexual intercourse. The question, therefore, is she likely to be sexually active in the future.
CEN is under a very tight supervisory regime. In this sense the possibility of CEN associating with males unsupervised is quite low. It is however not zero. The service providers and Dr Seaton are working towards a regime where CEN will have more freedom in her life. It is in the Tribunal’s view quite unnatural and unrealistic for CEN to be fully supervised 24 hours per day. CEN has expressed strong views on a number of occasions that she wishes to engage in a sexual relationship. Indeed it is obvious she has fantasized about this which has resulted in her involvement with the police where she has falsely accused a male of sexually interfering with her. There has also been occasions when she has been found with males in potentially compromising situations.
Dr Seaton’s submissions can not be taken lightly. She is the one to whom CEN has confided very closely. She sees CEN regularly and is strongly of the opinion that CEN is likely to be sexually active in the future given CEN’s motivation for relationships with males.
The Tribunal accepts the evidence from Dr Seaton that CEN has wanted to become sexually active with each of her boyfriends in the past and has expressed a keen desire to have babies with all her boyfriends over the past 7 years. Dr Seaton believes that it is highly likely that CEN will become sexually active in the future.
The Tribunal accepts that despite the current level of supervision efforts are underway to provide a less restrictive social environment for CEN and there is a likelihood that she could become sexually active in the future particularly given her expressed desire to have boyfriends and to engage in sexual activity.
The Tribunal, notwithstanding that CEN appears not to have been sexually active to date, on the balance of probabilities considers that it is likely that she will be sexually active in the future.
The second issue that the Tribunal needs to be satisfied of is whether there is no method of contraception that could be reasonably expected to be successfully applied.
The mirena coil has been used for over the past 5 years. The question arises as to whether this is being successfully applied. It has certainly resulted in no pregnancy but it is likely there has been a lack of sexual activity. However CEN finds the mirena difficult to cope with. It appears to cause high levels of anxiety and stress as she thinks it becomes dislodged when she has stomach discomfort. This results in regular ultrasounds and regular visits to the doctor, most of which are probably unnecessary. This level of anxiety and stress for CEN has an impact on her general lifestyle.
The Tribunal considers that CEN’s reaction to the mirena, despite discussions with her therapists about it, is not able to be abated. In these circumstances the Tribunal does not consider the mirena is a method that could reasonably be expected to be successfully applied.
The Tribunal takes a broad view of this phrase. In taking a broad view the Tribunal considers that CEN’s discomfort with the mirena and her anxiety about it must be given considerable weight.
One alternative to the mirena is depo provera. The evidence on this method of contraception is that CEN hates getting needles. CEN has also tried the contraceptive pill but gained weight excessively and there were mood swings.
The Tribunal also has to be satisfied that the sterilisation can not be reasonably postponed. The mirena coil has been inserted for over 5 years and there is evidence that it is starting to fail as evidenced by menstrual bleeding. Either the coil needs to be replaced or another form of contraception needs to be put in place.
The final matter that the Tribunal needs to be satisfied of is that CEN is unlikely in the foreseeable future to have capacity for decisions about sterilisation. CEN’s intellectual disability is irreversible. The Tribunal is satisfied that her ability to understand the nature and affect of decisions about the sterilisation and to make decisions freely and voluntarily will essentially remain unaltered for the rest of her life. The Tribunal has previously in these reasons concluded that she does not have capacity for these matters.
Subsection 3 of section 70 of the Act requires the Tribunal to take into account alternative forms of health care and the nature and extent of short or long term significant risks associated with the proposed procedure and other alternative forms of health care. The Tribunal has considered these matters and has concluded that there are no other sterilisation procedures that are available or likely to become available in the foreseeable future. The Tribunal is satisfied that there are no short or long term significant risks associated with the proposed procedure. The laparoscopic procedure proposed is a well established procedure within the medical profession with low levels of risk.
The Tribunal has also taken into account the risks associated with a general anaesthetic (GA). If CEN had the sterilisation procedure, she would require one GA, compared with a possible four to five, if she continued to use the mirena. It is obviously less risky to have one GA.
The Tribunal will therefore consent to the sterilisation.
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