JS and CS
[2009] WASAT 90
•7 MAY 2009
JURISDICTION : STATE ADMINISTRATIVE TRIBUNAL
STREAM: HUMAN RIGHTS
ACT: GUARDIANSHIP AND ADMINISTRATION ACT 1990 (WA)
CITATION: JS and CS [2009] WASAT 90
MEMBER: JUSTICE J A CHANEY (PRESIDENT)
MS J TOOHEY (SENIOR MEMBER)
DR B MENDELAWITZ (SENIOR SESSIONAL MEMBER)
HEARD: 29 APRIL 2009
DELIVERED : 7 MAY 2009
FILE NO/S: GAA 138 of 2009
BETWEEN: JS
Applicant
AND
CS
Proposed Represented Person
Catchwords:
Guardianship - Application by parents of young woman for appointment as her guardians to apply for and consent to hysterectomy - Application for Tribunal's consent to hysterectomy - Hysterectomy proposed to stop heavy and painful menstruation - Not proposed for fertility control - Proposed hysterectomy not a procedure for sterilisation within the meaning of the Guardianship and Administration Act 1990 (WA) - Consent of Tribunal not required - Previous treatment had been provided with consent of parents pursuant to s 119 of Guardianship and Administration Act 1990 (WA) - Tribunal satisfied in young woman's best interests that parents have formal authority - Parents appointed joint guardians to consent to treatment including hysterectomy
Legislation:
Guardianship and Administration Act 1990 (WA), s 4, s 43(1), s 56, s 57(1)(a), s 59(1), s 63, s 63(1), s 91(1)(b)(i), s 119
Result:
Parents appointed joint guardians to consent to treatment including hysterectomy
Category: B
Representation:
Counsel:
Applicant: Self-represented
Proposed Represented Person : N/A
Solicitors:
Applicant: Self-represented
Proposed Represented Person : N/A
Case(s) referred to in decision(s):
Re Jane (1998) 94 FLR 1
Secretary, Department of Health and Community Services v JWB and SMB (Marion's case) (1992) 175 CLR 218
REASONS FOR DECISION OF THE TRIBUNAL:
Summary of Tribunal's decision
The parents of a young woman with an intellectual disability applied to the Tribunal for an order appointing them her joint guardians and for the Tribunal's consent to her undergoing a hysterectomy.
The hysterectomy was proposed in order to stop the young woman menstruating. For 10 years she had experienced heavy and painful bleeding. Her gynaecologist had tried oral contraceptives, Depo-Provera injections and a Mirena intra-uterine contraceptive device, separately and in various combinations, to limited effect. The young woman was experiencing virtually continuous bleeding, often accompanied by painful cramps. The bleeding distressed her and was affecting her quality of life; she could no longer go swimming and had gained a lot of weight.
The Tribunal was satisfied that the young woman had expressed clearly her wish for the hysterectomy because it would mean an end to her symptoms. It was satisfied that she understood it would stop her menstruating and that she would no longer be able to bear children, but that her understanding was very limited. The Tribunal found she was not able to appreciate the nature, significance and risks of the operation and needed someone to consent to it on her behalf.
The Tribunal found that, as the sole purpose of the hysterectomy was to stop the symptoms associated with menstruation, it was not a procedure for sterilisation within the meaning of the Guardianship and Administration Act 1990 (WA). It followed that the consent of the Tribunal was not required by the Act.
A range of treatment including surgery had been provided to the young woman over the years with the consent of her parents pursuant to s 119 of the Guardianship and Administration Act 1990 (WA). It was not clear whether her doctors would agree to perform a hysterectomy on the basis of s 119 authority.
In the circumstances, the Tribunal found it in the young woman's best interests that her parents be appointed her joint guardians for the purpose of consenting to medical treatment and specified in its order that their authority included consenting to a hysterectomy. It was satisfied her parents were suitable to act on their daughter's behalf, and that their appointment and the proposed hysterectomy accorded with her wishes as best as they could be ascertained.
Background
CS is twenty-three years old and lives with her parents. She has a moderately severe intellectual disability and needs substantial support and supervision in all areas of living.
Since she began menstruating when she was 13, CS has experienced continuing heavy and irregular bleeding and pain which cause her distress and interfere with her enjoyment of life. Her gynaecologist has tried various means of controlling the bleeding and pain over the years but with limited success; those treatments that have worked have had limited effect or have worked for a limited time. A hysterectomy is now proposed as a last resort in order to stop menstruation altogether.
The Guardianship and Administration Act 1990 (WA) (GA Act) provides that a procedure for sterilisation of a represented person shall not be performed without the consent of the Tribunal and the represented person's guardian.
By virtue of s 119 of the GA Act, CS's parents have consented on her behalf over the years to a range of treatment including surgical procedures. There has been no need for their formal appointment as guardians. However, they have been advised they should obtain the Tribunal's consent to the proposed hysterectomy before proceeding.
An application for the Tribunal's consent to a procedure for sterilisation of a represented person may only be made by the represented person herself, her guardian or the Public Advocate.
CS's parents have made applications to the Tribunal for, firstly, their joint appointment as her guardians in order to consent on her behalf to the proposed hysterectomy and, secondly, for the Tribunal's consent to CS undergoing a hysterectomy.
Issues
The first issue is whether CS is a person for whom a guardian can and should be appointed because she is unable herself to give informed consent to the proposed hysterectomy.
Assuming that CS is a person for whom a guardianship order can and should be made, the second issue is whether the Tribunal should give its consent to the proposed hysterectomy.
A preliminary issue arises, being whether the proposed sterilisation is a procedure for sterilisation within the meaning of the Act.
The legislative framework
Section 43(1) of the GA Act provides that the Tribunal may appoint a guardian for a person over 18 years if it is satisfied that she is:
(i)incapable of looking after her own health and safety;
(ii)unable to make reasonable judgments in respect of matters relating to her person; or
(iii)in need of oversight, care or control in the interests of her own health and safety or for the health and safety of others;
and
(iv)in need of a guardian.
A procedure for the sterilisation of a represented person may not be carried out unless both her guardian and the Tribunal have consented in writing to the sterilisation: s 57(1)(a).
A represented person, her guardian or the Public Advocate may apply to the Tribunal for consent to the sterilisation: s 59(1).
The Tribunal may consent to the sterilisation of a represented person if it is satisfied that it is in her best interests: s 63(1).
'Procedure for sterilisation' does not include a lawful procedure that is carried out for a lawful purpose other than sterilisation but that incidentally results or may result in sterilisation: s 56.
'Sterilisation' is not defined in the GA Act. Its ordinary meaning in relation to a person is 'to make sterile; cause to be unfruitful or unproductive'; 'deprive of the ability to produce offspring': Shorter Oxford English Dictionary (Fifth edition).
General principles to be observed
In dealing with proceedings under the GA Act the Tribunal must observe the principles set out in s 4(2) of the Act.
Firstly, the Tribunal's main concern must be the best interests of the person whom the proceedings concern.
Secondly, every person is presumed capable of looking after her own health and safety, and making reasonable judgments about matters relating to her person, until the contrary is proved to the satisfaction of the Tribunal.
Thirdly, a guardianship order shall not be made if the needs of the person concerned could be met by other means less restrictive of her freedom of decision and action and, where a guardian is appointed, the order must be in terms that impose the least restrictions possible on her freedom of decision and action.
Finally, the Tribunal must, as far as possible, seek to ascertain the views and wishes of the person concerned as expressed, in whatever manner, at the time or as gathered from her previous actions.
Principles to be observed
The GA Act offers no specific guidance to the Tribunal when dealing with applications for sterilisation other than that it must be satisfied that the proposed procedure is in the best interests of the represented person.
The meaning of 'best interests', in the context of sterilisation of a person with a disability, has been considered by the courts on a number of occasions.
In Secretary, Department of Health and Community Services v JWB and SMB (Marion's case) (1992) 175 CLR 218, the High Court said it is not possible to formulate a rule which would identify cases where sterilisation would be in a person's best interests. But it emphasised (at 259) that sterilisation is a 'step of last resort', meaning that alternative and less invasive procedures must have all failed or proven inadequate, and the court must be certain that no other procedure or treatment will work.
The High Court said that sterilisation is a substantial invasion of a person's physical integrity and, in the case of a person with an intellectual disability who cannot herself consent to the procedure, it could never be authorised unless 'some compelling justification is identified and demonstrated': per Brennan J at 268. Similar principles were set out by the Full Court of the Family Court in Re Jane (1998) 94 FLR 1 at 19 - 21.
The Tribunal is also guided by the Protocol for Special Medical Procedures (Sterilisation) adopted in September 2003 by the Australian Guardianship and Administration Committee (now Council) whose membership includes the various tribunals, boards and courts exercising guardianship jurisdiction across Australia.
The principles set out in the Protocol reflect and expand on the principles applying to guardianship matters generally. Specifically, they recognise that every person has the same basic human rights regardless of their capacity; the right to respect for his or her human worth and dignity as an individual; and the right to participate, to the greatest extent practicable, in decisions affecting them. Sterilisation is an option of last resort and, if there is a choice between a more or less intrusive and permanent form of treatment, the less intrusive way should be adopted unless it is, or would be, unsatisfactory.
Evidence before the Tribunal
The Tribunal has before it written submissions from CS's parents and siblings and a report from her gynaecologist who has treated her since she was 13. It also has information and reports from the Disability Services Commission about services and support it has provided to CS since she was seven years old.
The Tribunal also has before it the report of an independent clinical psychologist who assessed CS's capacity to understand and consent to the proposed sterilisation. The assessment and report were arranged by the Public Advocate at the Tribunal's request.
Also at the Tribunal's request, the Public Advocate has investigated this matter and provided a written report. Her investigation included examining all the written material available to the Tribunal as well as interviewing CS and her parents at their home. A representative of the Public Advocate has also interviewed the gynaecologist, the clinical psychologist, and the hospital social worker and Disability Services Commission local area coordinator involved with CS and her family.
At a hearing on 29 April 2009 the Tribunal heard evidence from CS's parents, her gynaecologist, the clinical psychologist and the hospital social worker.
The Public Advocate attended the hearing to report on the outcome of her investigation and, in accordance with s 97(1)(b)(i) of the GA Act, to advance CS's best interests.
CS did not attend the hearing. Although the Tribunal and her parents had initially considered it important she attend, the clinical psychologist reported that CS found questions about the operation very intrusive and embarrassing; she had no understanding of why she had to talk to strangers about it and while she was cooperative, a hearing could be further traumatising and confusing. CS's parents confirmed this. The Public Advocate's representative also told the Tribunal that CS was clearly upset by her visit, and her parents confirmed it took a good deal of time after the visit to reassure CS that she was not going to be taken away from them or something similar occur.
In the circumstances, the Tribunal decided it was not in CS's best interests to require her to attend a hearing that she would not understand and that would likely only cause her distress. It was satisfied it had sufficient evidence before it, including about CS's wishes, to reach a decision in her best interests without hearing directly from her.
The Tribunal delivered its decision at the conclusion of the hearing and now provides its written reasons.
Evidence of the gynaecologist
CS's gynaecologist gave evidence that she has treated CS since she was 13 years old when she started menstruating. At that time she was bleeding irregularly and her bleeding was heavy and prolonged.
Initially, the gynaecologist treated CS with an oral contraceptive but, even when the dose was increased, it seemed to exacerbate the problem. She then treated CS with Depo-Provera but it made her gain a lot of weight. After about two years, the gynaecologist suggested trying an oral contraceptive again but CS had 'breakthrough bleeding' and the gynaecologist decided to return to Depo‑Provera. This involved eight‑weekly injections which CS found distressing because of her fear of needles, and she again gained weight. The gynaecologist persisted with Depo-Provera, despite the distress the injections caused CS, because it controlled her bleeding well for several years.
In early 2007, CS began to have spot bleeding which made her cry. The gynaecologist added an oral contraceptive to the Depo-Provera in an attempt to control the breakthrough bleeding but it continued and became constant.
In September 2007 the gynaecologist inserted a Mirena intra‑uterine contraceptive device but CS continued bleeding even after the addition of an oral contraceptive. The bleeding was at times quite heavy and, even when she was not bleeding, CS complained of feeling she was about to menstruate. The oral contraceptive did not change the breakthrough bleeding and seems to cause CS to be irritable.
The gynaecologist told the Tribunal that she has tried everything she knows to control CS's continuing breakthrough bleeding. She has considered an Implanon implant but says it would not control the bleeding because CS also takes Tegretol which reduces the effectiveness of progesterone-containing contraceptives. The Tegretol is primarily to control CS's seizures but also has important positive effects on her mood and behaviour. Further, she would be unlikely to tolerate a foreign body in her arm and would likely pick at the implant.
Another possibility is medication by implant to stop activity in the pituitary gland but the gynaecologist gave evidence that this would involve adding back hormones and, in any event, it is not a long‑term option for any patient. As CS has many years before she could be expected to reach menopause, it is not a viable option for her.
The gynaecologist proposes that CS undergo a laparoscopic hysterectomy, leaving her ovaries intact. This would involve several days in hospital with CS returning to normal activity after about four weeks. The Tribunal heard that there are risks associated with the operation, as with any major surgery. They include risks associated with the anaesthetic and the risk of thrombosis and infection. There are particular risks involved in laparoscopic surgery, in particular the risk of damage to other internal organs, but these are relatively low.
The bleeding prevents CS from swimming which she especially enjoyed. Without exercise, combined with the effect of the current medication, she has gained weight and now weighs around 100 kilograms.
On balance, the gynaecologist believes the risks of surgery are outweighed by the risks to CS's physical and emotional health of continuing bleeding and pain, probably for years.
The gynaecologist gave evidence that, although medical and scientific advances are always possible, she knows of nothing currently that will likely result in alternative treatment within the next ten years or so.
Because her ovaries would not be removed, CS's hormones would still go up and down and she might still experience irritability and mood swings; she may need hormone treatment to 'smooth out' the effect of her hormones but the gynaecologist believes it is likely that her moods will improve in any event once the bleeding stops.
The gynaecologist believes that CS has some understanding of the proposed operation. She knows it means she will not be able to bear children but she says she does not want children. Her principal understanding is that the bleeding and the pain would stop, and that is what she wants. The gynaecologist believes there will be no negative consequences of the operation for CS. She believes that CS will be 'so grateful and happy' that the bleeding has stopped that there will be only positive results.
The gynaecologist gave evidence that the hysterectomy is proposed for the sole purpose of stopping menstrual bleeding. There is no suggestion that CS requires contraception and the hysterectomy is not proposed for that purpose.
Evidence of the clinical psychologist
The clinical psychologist reports that CS has an intellectual disability caused by Williams syndrome, a rare neurological disorder caused by deletion of genetic material in a particular chromosome that typically gives rise to a range of symptoms including inhibited intelligence.
There seem to have been different opinions over the years as to whether CS in fact has Williams syndrome but it is not in dispute that she has a moderate intellectual disability with severe deficit in adaptive behaviours; she needs substantial support and supervision in all areas of living and has limited capacity to learn.
The clinical psychologist reports that CS knows that a hysterectomy is proposed and that it would stop her bleeding but she could not describe what would be involved other than that she would go to hospital and be given gas to make her sleepy. She knew she would no longer be able to have babies but indicated she did not want children because they are too much hard work. She had no understanding of her reproductive system or sexual intercourse. She knows only that the bleeding and pain will stop and that this would make her happy again.
Based on her contact with CS, the clinical psychologist believes that, if told she could not have the hysterectomy, CS would be 'beside herself'.
In the clinical psychologist's opinion, although CS will gain more knowledge as she grows older, and her capacity may fluctuate somewhat, her capacity to make informed decisions for herself concerning her treatment will not change significantly in the future.
Evidence of CS's parents
The evidence of the gynaecologist and the clinical psychologist is supported by CS's parents.
CS's mother read to the Tribunal from a diary she kept over several weeks in 2008 recording incidents of bleeding. The Tribunal has no reason to doubt that it accurately reflects the pattern of CS's bleeding. On most days her mother recorded heavy bleeding, lighter bleeding or spotting, often accompanied by an offensive odour and, on days when CS was not bleeding, she frequently complained that she felt as if she were about to menstruate. It is evident from the diary that CS would go at most only a few days without bleeding of some sort.
When CS was about 15 she had a gall bladder operation which stopped the pain she had been experiencing on account of her gall bladder. Her parents say she sees a hysterectomy as stopping her bleeding and pain in the same way; beyond that, she had no real understanding of what will happen.
CS's parents report that she is especially unhappy that she can no longer go swimming. Her father started a local swimming squad for people with disabilities which she enjoyed very much and helped her maintain a healthy weight. Her bleeding prevents her from participating in the swimming squad, adding to her distress about it.
CS's parents acknowledge that sterilisation will be the outcome of a hysterectomy but say its purpose is to stop CS's bleeding and pain rather than fertility control. They see no need for CS to use contraception and regard sterilisation as no more than a secondary outcome of the hysterectomy.
Submissions of the Public Advocate
The Public Advocate submits that CS is a person for whom a guardianship order can be made because she lacks the capacity to understand and make informed decisions for herself concerning her treatment and health care.
Taking into account all the circumstances, the Public Advocate believes the proposed hysterectomy would be in CS's best interests. She has no hesitation in supporting the parents' proposal that they be appointed her guardian and that they make the decision on her behalf.
However, the Public Advocate questions whether what is proposed is a procedure for sterilisation within the meaning of the GA Act because its purpose appears to be solely to stop the bleeding and pain of menstruation and not for fertility control
If the Tribunal finds the hysterectomy is not a procedure for sterilisation within the meaning of the GA Act, the Public Advocate submits that it may nevertheless be in CS's best interests for her parents to be appointed her guardians because an order would provide clear authority for decisions concerning medical treatment and the hysterectomy in particular.
Is the proposed hysterectomy a procedure for sterilisation?
The proposed hysterectomy will require the informed consent of CS or someone with lawful authority to consent on her behalf. However, unless it is a procedure for sterilisation within the meaning of the GA Act, it does not require the consent of the Tribunal under s 63.
Unlike legislation, such as in New South Wales, which focuses on the effect of proposed treatment, s 56 of the GA Act focuses on the purpose of the procedure. A procedure that 'incidentally results or may result in sterilisation' is specifically excluded. Treatment which is not for the purpose of sterilisation, even if it results in sterilisation, does not require the consent of the Tribunal.
We accept that all the treatments tried over the course of 10 years have, in the end, proven ineffective and that those treatments that have not been tried are not realistic or reasonable alternatives. We accept the evidence of CS's parents and her gynaecologist that a hysterectomy is now proposed as a last resort and that its sole purpose is to stop her menstruating in order to put an end to her continuing bleeding and pain.
Nothing in the evidence before the Tribunal suggests that fertility control is even an incidental purpose in this case. We accept the evidence of CS's parents and her gynaecologist in this regard.
We find that the hysterectomy proposed in this case is not a procedure for sterilisation within the meaning of the GA Act. It follows that it does not require the consent of the Tribunal.
Is CS in need of a guardian to consent to treatment?
We accept the evidence of the clinical psychologist, CS's parents and the gynaecologist that CS has no understanding of the nature, significance and risks of the proposed hysterectomy. We note that the Public Advocate does not dispute their evidence. We are satisfied that CS lacks the capacity to act on her own behalf in this regard and cannot give or withhold consent in any informed or meaningful way.
We are satisfied on the evidence before us that, within her limited understanding, CS wants the hysterectomy to be performed and that she would want her parents to consent to it on her behalf. We are satisfied that her parents will act in her best interests and are suitable to make this decision on her behalf.
The Tribunal has heard that, over the years, CS's parents have consented on her behalf to a range of treatment including surgical procedures. Treating doctors have apparently acted on consent given pursuant to s 119 of the GA Act. There is no suggestion that anyone should have acted otherwise.
It is not clear that CS's doctors would not perform the hysterectomy without the consent of the Tribunal. However, her parents say the application was made on the advice of the hospital that the Tribunal's consent should be obtained.
It is also not clear that a doctor would agree to perform the hysterectomy on the basis of the consent of CS's parents under s 119 of the GA Act, without their formal appointment as guardians for that purpose. If the doctor were not agreeable to performing the hysterectomy without her parents having a formal appointment, then a further application would have to be made.
Conclusion
In all the circumstances, we find it in CS's best interests to appoint her parents joint limited guardians with authority to consent on her behalf to treatment. Formal authority also serves to underline that the decision to be made on behalf of CS is one of profound consequence.
To put the matter beyond doubt, we will specify in the order that the authority of CS's parents to consent on her behalf to treatment includes the authority to consent to a hysterectomy. Had it been necessary, the Tribunal would have given its consent in this case to the hysterectomy.
As CS is likely to continue to need medical treatment for many years to come, the appointment will be for the maximum period of five years.
Orders
1.The Tribunal declares that CS is:
(a)incapable of looking after her own health and safety;
(b)unable to make reasonable judgments in respect of matters relating to her person;
(c)in need of oversight and care in the interests of her own health and safety; and
(d)in need of a guardian.
2.The Tribunal appoints CS's parents her joint limited guardians for the purpose of consenting to any treatment and health care for her including to consent to a hysterectomy.
3.The application for orders under s 63 of the Guardianship and Administration Act 1990 is dismissed.
4.This order is to be reviewed by 29 April 2014.
I certify that this and the preceding [80] paragraphs comprise the reasons for decision of the State Administrative Tribunal.
___________________________________
JUSTICE J A CHANEY, PRESIDENT
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