QN (Medical Consent)
[2018] TASGAB 13
•19 June 2018
GUARDIANSHIP AND ADMINISRATION BOARD
HOBART
QN (Medical Consent) [2018] TASGAB 13
Statement of Reasons
Before: Rowena Holder
Lindi Wall
Matthew Fasnacht
Date of hearing: 19th June 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 the person’s best interests; what is the least restrictive alternative.
Guardianship and Administration Act 1995
Background
QN is a 19 year old woman with Tristomy 21 (Down syndrome). She has a supportive mother involved in her life, whom she resides with. QN usually attends a day service five days a week.
Application
Dr Sue Keating, obstetrician and gynaecologist made an application to the Board to provide consent for QN to have a sterilisation procedure as a form of permanent contraception.
Hearing
On 19th June 2018 the Guardianship and Administration Board (the Board) conducted a hearing to determine the application for special treatment concerning QN.
The following persons attended the hearing:
·FH, (QN’s Mother)
·Dr Sue Keating, Applicant and Gynecologist
·Dr Bronwyn Fitzgerald, pediatrician (by telephone)
·Ms Maddy Russell, Office of the Public Guardian
The Board had the following documents before it:
·Application for consent to medical treatment - sterilisation
·Health Care Professional Report from Dr Franz Ittermann dated 12/01/18
·Health Care Professional Report from Dr Robina Hanafi dated 8/12/15
·Reports from Dr Michelle Williams dated 04/04/2017 and 20/10/2017
·Report from Dr Sue Keating dated 22/02/2018
·Report from Dr Remi Kowalski, cardiologist dated 25/08/17
·Report from Associate Professor Michael Cheung dated 13/11/2015
·Report from the Office of the Public Guardian dated 30/10/17
The Board has determined to prepare a Statement of Reasons, although no formal request has been made.
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 salpingectomy by laparoscopy or if necessary by laparotomy under general anaesthetic, 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?
The applicant, is Dr Sue Keating who is QN’s treating gynecologist. The Board determined that the applicant has a proper interest in the matter.
Section 45(1)(a) – Is the medical treatment otherwise lawful?
The proposed medical treatment is a salpingectomy by laparoscopy or if necessary by laparotomy under general anaesthetic, which is lawful. Initially Dr Keating recommended the Essure procedure however this is no longer available.
Section 3 and 36(1) - Does the person have a disability?
Disability is defined in section 3 of the Guardianship and Administration Act 1995. A Health Care Professional Report (HCPR) has been received from Dr Franz Ittermann dated 10th January 2018 which reports QN has Down syndrome. Dr Michelle Williams in her report dated 4th April 2017 provided a diagnosis of Trisomy 21 (Down syndrome). The Board was satisfied on the evidence that QN has a disability.
Sections 36 and 45(1)(b) - Is the person incapable of understanding the general nature and effect of the proposed treatment?
A HCPR from Dr Itterman reports that QN ‘needs constant supervision and has an inability to perform reasoned decisions.” Dr Williams in her report dated 20th October 2017 states QN
“…has a severe intellectual disability and communication difficulties. She does not have the cognitive capacity to understand anything more complex than simple instructions and requests. QN does not have an understanding of time. She is not capable of weighing her options and making or communicating an informed decision regarding her own care. QN’s expressive and receptive language skills are very simple; she functions at a preschool level. QN is not going to gain any significant improvement in communication or cognition in coming years.”
FH gave evidence that QN’s understanding is very limited about the proposed treatment and the reason for it. FH stated her daughter does not listen well, needs simple repetitive instruction and usually only responds to her own immediate wishes.
The Board concluded that QN lacks capacity by reason of her disability to understand the general nature and effect of the proposed treatment.
Determining Best Interests
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 QN.
Sections 6 and 45(2)(a) – What is the person’s wishes?
QN wishes are not ascertainable given her disability. She did not attend the hearing. A guardian from the Office of the Public Guardian met with QN on the 23rd October 2017 and provided a report dated 30th October 2017 to the Board which states:
“During the interview, it was apparent that FH’s ability to understand questions and information about the application was limited by her communication abilities. When I asked FH if she understood the procedure or the impact this might have on pregnancy or menstruation she replied multiple times “Not sure.”
Section 45(2)(b) – What are the consequences to the person if the proposed treatment is not carried out?
The consequence of the proposed treatment not being carried out is that QN is not permanently infertile and is at risk of pregnancy. Pregnancy carries significant risks for QN, as she suffers from congenital heart disease.
The Board received medical evidence from Associate Professor Michael Cheung, cardiologist, who reports:
“She initially came to The Royal Children’s Hospital for repair of her AV septal defect in August 1998. This required further several operations to deal with a leaky left sided atrioventricular valve. She currently has a moderate degree of left AV valve stenosis which physiologically equates to mitral stenosis.”
Further, Dr Michelle Williams, pediatrician reports:
“QN was born with a complex cardiac anomaly known as AVSD which was repaired in infancy. The surgery was complicated with a diaphragmatic paralysis requiring a subsequent operation on her diaphragm. QN’s heart remains abnormal, with increasing stenosis (thickening) of the atrio-ventricular valve post-surgery.”
Dr Williams also reports on the medical impact a pregnancy would have on QN.
“…if QN’s cardiac output increases (by pregnancy, massive weight gain or so on) she will go into heart failure” and
“QN’s heart would be put at risk by the physiological stresses of pregnancy, majorly increasing her risk of heart failure.” She would not be a candidate for a heart transplant.”
Dr Keating gave evidence at hearing that if QN fell pregnant, it would be a high risk pregnancy and life threatening for her because of her heart condition. Dr Keating also indicated that if QN fell pregnant she would require a caesarean section which carries risk itself. Dr Keating opined:
“Pregnancy is far more dangerous for this young woman than the proposed treatment.”
The Board gives weight to the medical evidence and in particular that the medical consequences of QN falling pregnant are significant.
Section 45(2)(c) – Are there any alternative treatments available to the person?
In her application, and again during the hearing, Dr Keating outlined her reasons for forming the view that each of the alternate treatments, including hormone alternatives, the oral contraceptive pill, and intrauterine contraceptive devices, would not be appropriate for QN. Dr Keating reported that QN had been trialed on a number of oral contraceptives which were not well tolerated and resulted in significant dysphoria and mood disturbance.
Dr Keating also expressed concern that the use of oral contraceptives over a period of time could cause clots and strokes. Dr Fitzgerald reported that the use of intrauterine devices is risky because of the risk of cardiac infection. Further, Dr Michelle Williams in her report of the 20th October 2017 states that:
“Unfortunately QN’s cardiac disease renders both combined oral contraceptive and the intrauterine devices unsuitable therapies. Contraceptive pills increase the risk of clots and are contraindicated in women with congenital heart. Intrauterine devices increase the risk of endocarditis (life threatening cardiac infection) in women with congenital heart diseases and are thus also contraindicated disease and are thus also contraindicated.”
On the evidence before it, the Board determined that there was no alternative treatment available.
Section 45(2)(d) – Can the proposed treatment be postponed on the grounds that better treatment may become available?
There was no evidence of any better treatment becoming available.
Regulation 9(f)(ii) – Are there risks in carrying out the proposed treatment?
Where there has been previous abdominal surgery, as has been the case for QN, there is a distinct possibility that lesions can make it difficult or impossible to perform the salpingectomy by laparoscopy and therefore a laparotomy may be required. Dr Keating indicated this would need to be determined on the day, as there is no scan or procedure pre surgery which could indicate whether this is required.
The proposed treatment requires a general anesthetic and there is a risk QN may have a reaction to the anesthetic. Dr Keating also reported that a small risk of death exists with any major procedure under anesthetic. Associate Professor Michael Cheung reports:
“…clearly the less frequent anesthetics were required, the better. Her anesthetic risks will increase somewhat due to the mitral stenosis and her more difficult airway due to her Down syndrome.”
A salpingectomy by laparoscopy carries a possible risk of injury to the bladder, blood vessels or bowel during the course of the procedure.
The Board also heard evidence of the risk of infection. Dr Williams reports that:
“The scar tissue in QN’s heart from previous surgery places her at risk of infection of the heart muscle, a condition known as infective endocarditis. This is a serious life threatening infection.”
Is the special treatment the least restrictive?
Section 6 of the Guardianship and Administration Act 1995 requires the Board to consider what the least restrictive alternative is.
The salpingectomy by laparoscopy or laparotomy is a serious invasive treatment with some risks. It would permanently make QN infertile.
The High Court decision referred to as Marian’s case[1], which was a case concerning a child under the age of 18 years as provided guidance as to what is involved in authorising sterilisation a 14 year old girl with an intellectual disability. 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:
“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 is 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 other 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.
It is true that the phrase "best interests of the child" is imprecise, but no more so than the "welfare of the child" and many other concepts with which courts must grapple. As we have shown, it is confined by the notion of "step of last resort", so that, for example, in the case of a young woman, regard will necessarily be had to the various measures now available for menstrual management and the prevention of pregnancy. And, if authorisation is given, it will not be on 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 her needs and capacities.[2]”
[1] Department of Health and Community Services v JWB and SMB [1992] HCA 15
[2] Department of Health and Community Services v JWB and SMB [1992] HCA 15
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. 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.
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 and such treatment is in the best interests of QN.
FH gave evidence that QN was previously “living in a bubble”, isolated from others and as a result had no interest in people. QN’s behaviours were also getting worst which resulted in her mother deciding to move to Hobart, closer to services and medical support. FH stated that the day service which QN now attends has been important to develop her daughter’s life skills and social skills and has resulted in her coming out of her shell. She described QN as now being “quite gregarious and social” and confirmed QN has developed good relationships with other day service participants.
The Board heard evidence from FH that QN enjoys male company more than female company and has shown interest in particular male persons in the past. FH advised that her daughter has fallen in love a number of times and has experimented with romantic relationships, kissing and cuddling. FH also indicated that her daughter has requested that her boyfriend be allowed to come over and sleep in her bed with her.
Dr Keating indicated that QN has sexualised behaviour and the chances of QN having sexual activity is high. Dr Keating stated that she has numerous clients with Down syndrome who engage in sexual activity and are able to use oral contraception, which is not possible for QN. Dr Keating indicated it would be impossible for QN to be able to keep and care for a baby.
“I think it would be extremely unwise for her to ever have a pregnancy but in terms of her being able look after the child and in terms of risk regard to her cardiac anomaly from carrying a pregnancy.”
Dr Keating indicated that in her opinion preventing pregnancy would come down to taking steps to avoid QN having unsupervised contact with male persons. If such steps were taken this would result in QN having to cease the day service she attends, and monthly weekend or holiday respite care she currently attends, as there is no one-on-one supervision available at these services. The Board heard evidence that these steps would essentially result in QN being more isolated and her autonomy reduced significantly.
Dr Williams reported that:
“A pregnancy would be disastrous and life threatening for QN is vulnerable to non-consensual sexual intercourse, but should not be prevented from establishing intimate relationships with peers for fear of medical consequences.”
The Board gives weight to the fact that QN appears to be participating as fully as she is able in life, enjoying socialising with others and living a life significantly less isolate than one she previously enjoyed. The Board acknowledges QN’s human right to freely engage in contact with persons of both sexes and the right to enter intimate relationships if she so chooses. The Board notes the views of those present at hearing that it is highly likely that QN may engage in sexual relationships and appears to have opportunity to do so. The least restrictive option is therefore to allow her to enjoy her current lifestyle and not to socially isolate her from male persons so as to ensure she does not have sexual relationships and therefore to prevent pregnancy. To do so would result in a severe reduction of QN’s quality of life and freedom to engage in social activity.
The Board also gives weight to the significant medical risk to QN if she were to become pregnant. Evidence that pregnancy could be life threatening for QN due to her cardiac condition has been fully considered and which has been fully set out earlier in this Statement of Reasons. The evidence has also indicated there is no less invasive or less permanent contraceptive options available to QN.
For these reasons the Board determines it is appropriate to consent to the proposed special medical treatment
Conclusion
After hearing an application pursuant to section 44 of the Guardianship and Administration Act 1995 made by Dr Keating, for the consent of the Board for special medical treatment for QN:
THE BOARD consents to the special treatment comprising of salpingectomy, by laparoscopy, or if necessary by laparotomy under general anesthetic.
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