KI (Medical Consent)
[2018] TASGAB 12
•31 May 2018
GUARDIANSHIP AND ADMINISRATION BOARD
HOBART
KI (Medical Consent) [2018] TASGAB 12
Statement of Reasons
Before: Rowena Holder
Lindi Wall
Matthew Fasnacht
Date of hearing: 31 May 2018
Special treatment causing permanent infertility; whether the person has a disability and lacks capacity to give consent to the carrying out of the special treatment; whether the special treatment is in her best interests; what is the least restrictive alternative
Guardianship and Administration Act 1995
Background
KI is a 26 year old woman with a moderate intellectual disability. She has supportive parents involved in her life. She lives in supported accommodation in Hobart. KI lives in a three bedroom house with one female and one male resident. A carer stays overnight with her in her unit. KI has lived in her current accommodation since November 2017. KI usually attends a day service five days a week. There has been times when KI has not attended day services due to an increase in challenging behaviours. KI receives NDIS funding which provides for a one on one carer.
Application
KI’s mother made an application to the Board to provide consent for KI to have a sterilisation procedure as a form of permanent contraception. KI’s mother expresses a strong wish to avoid the possibility of KI becoming pregnant.
Dr Sue Keating states: “There are associated with her menstrual cycle in terms of mood disturbance and behavioural problems. There is also the issue of contraception. Her adoptive mother has brought to my attention about the concern of contraception in the unsupervised situation at the group home.”
Hearing
On 31st May 2018 the Guardianship and Administration Board (the Board) conducted a hearing to determine the application for special treatment concerning KI.
The following persons attended the hearing by telephone:
·TI, Applicant
·Dr Sue Keating,
·Associate Professor Robyn Wallace
The Board had the following documents before it:
·Application for Consent to Medical Treatment - sterilisation
·Health Care Professional Report from Dr Don McLeod, General Practitioner dated 10 October 2017
·Report from The Shaid Clinic, Associate Professor Robyn Wallace dated 21 February 2018
·Letter from Hobart OBGYN Dr Sue Keating undated
·Report of Assessment by Dr Angela Livingstone, consultant psychiatrist dated 22nd April 2018
·Draft Behaviour Management Plan from Di Pullen, Clinical Psychologist dated 07/ April 2018
The Guardianship & Administration Act 1995
The Guardianship and Administration Act 1995 includes in the definition of special treatment “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.”
Only the Board can authorise special treatment for a person who is incapable of giving consent to special treatment. It is beyond the power of a person responsible or a guardian to consent to special treatment. As the proposed treatment, that is a laparoscopy with ligation of fallopian tubes with filschie clips or removal of fallopian tubes, has the effect of rendering a person permanently infertile, it is special treatment.
Before the Board may consent to the carrying out of special treatment, it must be satisfied of the criteria set out in Part 6 of the Guardianship and Administration Act 1995. Section 45 provides as follows:
Whether:
(a) the proposed medical treatment is otherwise lawful
(b)the person is incapable of giving consent (as defined in section 36, namely whether s/he is incapable of understanding the general nature and effect of the proposed treatment)
(c) the medical treatment would be in the person’s best interests
For the purposes of determining whether the proposed medical treatment would be in the person’s best interests, matters to be taken into account by the Board include:
(a)the person’s wishes
(b)the consequences to the person if the proposed treatment is not carried out; and
(c)any alternative treatment available to the person
(d)whether the proposed treatment can be postponed on the ground that better treatment may become available and whether the person is likely to become capable of consenting to the treatment
The Board must also balance the principles in section 6 of the Guardianship and Administration Act 1995, which are:
(a) the means which is the least restrictive of a person's freedom of decision and action as is possible in the circumstances is adopted; and
(b) the best interests of a person with a disability or in respect of whom an application is made under this Act are promoted; and
(c) the wishes of a person with a disability or in respect of whom an application is made under this Act are, if possible, carried into effect.
These principles are to be observed by the Board for every function or power conferred on it by the Act.
Section 44(1) – Does the applicant have a proper interest in the matter?
10. The applicant, is KI’s mother. TI gave evidence that she and her husband adopted KI when she was 8 years of age. The Board determined that the applicant has a proper interest in the matter.
Section 45(1)(a) – Is the medical treatment otherwise lawful?
11. The proposed medical treatment is a laparoscopy with ligation of fallopian tubes with filschie clips or removal of fallopian tubes, which is lawful.
Section 3 and 36(1) - Does the person have a disability?
12. Disability is defined in section 3 of the Guardianship and Administration Act 1995. A Health Care Professional Report (HCPR) has been received from Dr Don McLeod dated 10th October 2017 which reports KI has a severe intellectual disability, some physical disability and severe behavioural problems. A medical report from Dr Sue Keating, obstetrician and gynecologist states that KI has a significant intellectual impairment and also a degree of autism. A medical report from Dr Angela Livingstone, consultant psychiatrist dated 22nd April 2018 states that KI ‘is a young woman with autism spectrum disorder and a mild intellectual disability, both presumably related to severe neglect, malnutrition and abuse in her early life.’ No one disputed this evidence at hearing. The Board was satisfied that KI has a disability.
Sections 36 and 45(1)(b) - Is the person incapable of understanding the general nature and effect of the proposed treatment?
13. A HCPR from Dr Don McLeod reports that KI cannot understand the nature and effect of the proposed medical treatment and is unable to indicate whether or not she consents or does not consent to the carrying out of the treatment. TI also gave evidence at the hearing that KI “wouldn’t understand what is happening” in respect of the proposed treatment or the need for it.
14. The Board concluded that KI lacks capacity by reason of her disability to understand the general nature and effect of the proposed treatment.
Determining Best Interests
15. As Section 45(2) of the Guardianship and Administration Act 1995 requires, the Board must take the following matters into account when considering whether the special treatment is in the best interests of KI.
Sections 6 and 45(2)(a) – What is the person’s wishes?
16. KI’s wishes are not ascertainable given her disability. She did not attend the hearing. TI gave evidence that if questioned KI would not be able to express her wishes concerning treatment and its consequences.
Section 45(2)(b) – What are the consequences to the person if the proposed treatment is not carried out?
17. The consequence of the proposed treatment not being carried out is that KI is not permanently infertile.
18. Whether KI has the special treatment or not will have no impact on her premenstrual dysphoric disorder (PMDD) and behavioural issues.
19. The Board heard evidence that without appropriate contraception there is a risk of possible pregnancy. There was no evidence before the Board that KI is or has been sexually active. However concern was expressed that because of her openness KI is vulnerable to being taken advantage of sexually. The Board heard evidence of the impact pregnancy would have on KI. The Applicant indicated that KI is likely to get very obsessive with a baby and to give it up would be very traumatic for her. The Applicant stated “She has had so much trauma till now, a pregnancy would be the end of her mental capacity.”
Section 45(2)(c) – Are there any alternative treatments available to the person?
20. The Board heard evidence that KI had been trialed on a number of oral contraceptives which were not well tolerated and resulted in “sustained agitation and aggression.” The Board also heard evidence that KI had a Mirena IUD inserted in late 2013 in which also resulted in increased behaviours and irritability and has since been removed.
21. KI was referred to Dr Angela Livingstone who met with her and her mother on the 22nd April 2018 . Following that consultation Dr Livingstone recommended
“With regard to her premenstrual dysphoric disorder (PMDD), her sensitivity to side effects does make it difficult. I would follow the treatment algorithm of Professor Kulkarni…who specialises in women’s mental health, and initially trial continuous Zoely without using the inactive tablets. This does cost more than the other oral contraceptives but has the best side effect profile. If tolerated it would also mean that she may not require tubal ligation.”
22. The Board heard evidence from TI that KI had commenced Zoely 4-6 weeks ago, as prescribed by her GP Dr Macleod and to her knowledge was tolerating it without any increase in behaviours or other side effects. She did indicate that she was currently interstate and therefore had not had opportunity to speak with staff regularly, however had not been contacted by staff reporting any concerns. Dr Keating gave evidence that the tolerance of Zoely for 4-6 weeks was a good indicator it was being tolerated because if there was a sensitivity to the medication this was normally a quick response. Dr Keating indicated it was unknown what effect it would have on KI’s bleeding patterns. It was noted that KI would be medically reviewed be her GP in a few weeks.
23. On the evidence before it, the Board determined that there was alternative treatment available that is the use of the oral contraceptive pill, Zoely.
Section 45(2)(d) – Can the proposed treatment be postponed on the grounds that better treatment may become available?
24. There was no evidence of any better treatment becoming available. However as previously noted, KI has commenced on Zoely and is appearing to tolerate it.
Regulation 9(f)(ii) – Are there risks in carrying out the proposed treatment?
25. The proposed treatment requires a general anesthetic and there is a risk KI may have a reaction to the anesthetic. A laparoscopy carries a possible risk of injury to the bladder, blood vessels or bowel during the course of the procedure. Dr Keating also reported that a small risk of death exists with any major procedure under anesthetic. Professor Wallace gave evidence that risks of treatment with a general anesthetic are higher with adults who have disability.
Is the special treatment the least restrictive?
26. Section 6 of the Guardianship and Administration Act 1995 requires the Board to consider what is the least restrictive alternative.
27. The Board heard evidence that KI has commenced on a trial of oral contraceptive Zoely and is appearing to tolerate it. Dr Keating reported that this oral contraceptive provides over 99% contraceptive value which “is almost as good as a sterilisation procedure.” Dr Keating reported that the oral contraceptive pill must be taken daily as per the manufacturer’s guidelines for it to be effective as a contraception. TI gave evidence that KI’s medication was provided to her daily by staff at her supported accommodation and she was not aware of any issue with this process.
28. Dr Keating also indicated that the oral contraceptive pill can have other benefits apart from contraception including changing the hormonal pattern of an individual so they don’t ovulate and don’t have the ups and downs of hormones that can result in mood disturbances and mood dysphoria.
29. Dr Keating gave evidence that if Zoely is reliably provided and KI is tolerating it then is a very good contraception and there is no need to do a laparoscopy. Zoely may have the added benefit of assisting KI with managing mood dysphoria.
30. The laparoscopy is a serious invasive treatment with some risks. It would permanently make KI infertile.
31. The High Court decision in a landmark decision referred to as Marian’s case[1], which was a case concerning a child under the age of 18 years and whether parents could make a decision about sterilisation of a child. The High Court set out some important principles, which are applicable to decisions about the sterilisation of adults with cognitive impairment. Mason C.J., Dawson, Toohey and Gaudron JJ commented that:
[1] Department of Health and Community Services v JWB and SMB [1992] HCA 15
“The function of a court when asked to authorize sterilisation is to decide whether in the circumstances of the case, that is in the best interests of the child. We have already said that it is not possible to formulate a rule which will identify cases where sterilisation is in his or her best interests. But it should be emphasized that the issue is not at large. Sterilisation is a step of last resort. And that, in itself, identifies the issue as one within narrow confines.
In the context of medical management ‘step of last resort’ is a convenient way of saying that alternative and less invasive procedures have all failed and it is certain that no to her procedure or treatment will work…And if authorization is given, it will not be on an account of the convenience of sterilisation as a contraceptive measure, but because it is necessary to enable her to lead a life in keeping with needs and capabilities[2].”
Justice Brennan in Marion’s case stated that:
Sterilisation of an intellectually disabled child requires justification of a compelling kind, for involuntary sterilisation is a serious invasion of that child’s personal integrity and a grave impairment of that child’s human dignity[3].
…The sterilisation of a human being is simply in order to prevent him or her from becoming a parent is an extreme denial of that person’s rights.
Further Justice Brennan stated
However, between therapeutic purposes on the one hand and manifestly base purposes on the other, a variety of different purposes may appear which many would regard as of significant value in assessing the "best interests" of an intellectually disabled child. The purposes which fall into this category can be gathered under the broad description of "preventative": to prevent the risk of a pregnancy which the child could not properly understand and the concomitant risk of parenthood with responsibilities beyond the capacity of the child to discharge. These risks are an understandable source of anxiety to parents, guardians and others who have a genuine concern for the welfare of an intellectually disabled child. These are risks which create an understandable anxiety in many parents, guardians and others who have a genuine concern for the welfare of a normal child. In the case of a normal female child, it would be wholly unacceptable to permit sterilisation in order to prevent pregnancy or parenthood, though those events might be thought to be tragedies in particular circumstances by reasonable persons concerned with the welfare of the child. Depending on the circumstances, the use - or, a fortiori, the exploitation - of the sexual attributes of a female child may entail tragic consequences, yet the risk or even the likelihood of tragic consequences affords no justification for her sterilisation. What difference does it make that the risk is occasioned by an intellectual disability? The answer to this question depends on the view taken of the proposition earlier set out in the Declaration on the Rights of Mentally Retarded Persons: they are entitled to the same rights as other humans to the maximum degree of feasibility. To accord in full measure the human dignity that is the due of every intellectually disabled girl, her right to retain her capacity to bear a child cannot be made contingent on her imposing no further burdens, causing no more anxiety or creating no further demands. If the law were to adopt a policy of permitting sterilisation in order to avoid the imposition of burdens, the causing of anxiety and the creating of demands, the human rights which foster and protect human dignity in the powerless would lie in the gift of those who are empowered and the law would fail in its function of protecting the weak.
Where it is desirable to avoid the risk of pregnancy, the risk may be avoidable by means which involve no invasion of the girl's personal integrity. Those who are charged with responsibility for the care and control of an intellectually disabled girl (by which I mean a female child who is sexually mature) - whether parents, guardians or the staff of institutions - have a duty to ensure that the girl is not sexually exploited or abused. If her disability inclines her to sexual promiscuity, they have a duty to restrain her from exposing herself to exploitation. It is unacceptable that an authority be given for the girl's sterilisation in order to lighten the burden of that duty, much less to allow for its neglect. In any event, though pregnancy be a possibility, sterilisation, once performed, is a certainty. If a non-therapeutic sterilisation could be justified at all, it could be justified only by the need to avoid a tragedy that is imminent and certain. Such a situation bespeaks a failure of care, and sterilisation is not the remedy for the failure[4].
[2] Department of Health and Community Services v JWB and SMB [1992] HCA 15, Paragraph 73 and 74
[3] Department of Health and Community Services v JWB and SMB [1992] HCA 15, Paragraph 7
[4] Department of Health and Community Services v JWB and SMB [1992] HCA 15, Paragraph 22 and 23
32. The concept of “least restrictive” should also be considered in light of the United Nation’s International Convention on the Rights of Persons with Disabilities (UN Convention), which was ratified by Australia and entered into force on the 3rd May 2008, and thereby accepted by Australia.
33. Article 17 of the UN Convention provides that every person with a disability has a right to respect for his or her physical and mental integrity on an equal basis with others.
Article 23(1)(c) states that:
Parties shall take effective and appropriate measures to eliminate discrimination against persons with disability in all matters relating to marriage, family, parenthood and relationships, on an equal basis with others, so as to ensure that: …
(c) persons with disabilities, including children, retain their fertility on an equal basis with others.
34. The proposed limitation on KI’s rights, that she be rendered permanently infertile by way of special treatment, is a significant one. The purpose of the special treatment was identified as that of eliminating the chance of KI becoming pregnant if she became sexually active or was taken sexual advantage of. Professor Wallace noted:
KI’s family have been most concerned about her becoming pregnant. If she did become pregnant that would likely be because of her lack of understanding about sex, and could also be against her wishes. My concern is that it won’t be prevented by sterilisation. I would anticipate that a high quality service provider would provide the utmost protection and family have already initiated measures, of having female workers working with KI. She is vulnerable as is many other intellectually disabled women. To prevent her from becoming pregnant in my opinion, the top of the line would be the quality and level of protection in her home and in the day service. The sterilisation process won’t help with the premenstrual behaviour issues and there has been a good lot of work and support in that area. It will protect from pregnancy but not the premenstrual tension or behavioural problems
… surely the care by the support workers and service provider there should be no gaps, absolutely no gaps in her vulnerability....it applies to every woman with an intellectual disability in our disability support providers there should be an absolute protection and respect for the woman’s safety and sexual vulnerability … the front line is to make sure KI would not be abused.”
TI accepted that service providers did owe KI a duty of care but indicated it was not a guaranteed outcome that KI would not be taken advantage of sexually. The Board notes the comments of Justice Brennan, set out above against providing authority for sterilisation in order to allow for an organisation’s neglect.
35. The Board recognises the significant support KI has received from her parents since her adoption at the age of 8 years. The Board also acknowledges the desire by the applicant to protect her daughter from an unforeseen pregnancy and in seeking the best for her.
36. The High Court’s principles set out in Marion’s case, the UN Convention and the principles of the Guardianship and Administration Act 1995 lead the Board to recognise that sterilisation of a woman with an intellectual disability requires justification of the most compelling type and should be seen as a “last resort.” The Board must be satisfied that there is no less restrictive alternative. No therapeutic purpose was identified as a basis for the procedure. The Board was not satisfied that rendering KI infertile was necessary and the least restrictive way to achieve the purpose of preventing pregnancy, particularly given KI is tolerating the oral contraceptive Zoely, a less invasive option for contraception.
Conclusion
After hearing an application pursuant to section 44 of the Guardianship and Administration Act 1995 made by TI, for the consent of the Board for special treatment for KI:
THE BOARD does not consent to the carrying out of the special treatment.
The application is dismissed.
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