Re H
[2004] FamCA 496
•20 May 2004
[2004] FamCA 496
FAMILY LAW ACT 1975
FAMILY COURT OF AUSTRALIA NO.PAF 3948 of 2003
AT PARRAMATTA
BETWEEN: BH & CHH (Applicant/Parents)
AND: SEPARATE REPRESENTATIVE
REASONS FOR JUDGMENT
BEFORE: JUSTICE I R COLEMAN
DATE OF HEARING: 20th day of May 2004
DATE OF JUDGMENT: 20th day of May 2004
REASONS FOR JUDGMENT PUBLISHED: 2nd day June 2004
APPEARANCES: Mr S of Counsel (instructed by B Solicitors), appeared on behalf of the applicant parents.
Ms Y of Counsel (instructed by Legal Aid Commission NSW, Solicitors), appeared on behalf of the separate representative.
By Application filed 5 November 2003 the parents of H (hereinafter referred to as “the parents”) applied to the Court for orders in the following terms:-
“1. That the Applicant husband and wife be directed to do all such acts and things and sign all and any documents/authorisations/consents necessary to cause the child H (born [in] 1991) to attend a medical practitioner to obtain medical treatment such that:-
a. She thereafter ceases to menstruate;
b. She is permanently prevented from becoming pregnant.
2. Such other order as to the Court seems appropriate.”
The Application came before the Court on 12 November 2003. The parents were at that time represented by Counsel. On 12 November 2003, Flohm J made orders in the following terms:-
“1. That pursuant to Section 68L of the Family Law Act a Child Representative be appointed for the child H born [in] 1991 and that the Legal Aid Commission of New South Wales be requested to arrange such representation.
2. That the Solicitor for the Applicants advise the Senior Solicitor, Family Law Litigation, Legal Aid Commission of New South Wales of the Orders herein within 72 hours.
3. That the Solicitor for the Applicants is to make available to the Legal Aid Commission of New South Wales, within 7 days, copies of all applications and affidavits upon which the applicants rely together with any existing Orders and copies of any relevant reports.
4. That applicants are to serve the Director General of the Department of Community Services with a copy of the Form 3 Application filed on 5 November 2003 and the affidavit sworn by [B H] on 16 October 2003 and filed on 5 November 2003.
5. That the Director General of the Department of Community Services notify the court as soon as possible if the Department intends to intervene in the proceedings.
6. That the matter is adjourned for mention at 10.00am on 12 December 2003 in the Judicial Duty List.
7. That applicants are to notify the Director General of the Department of Community Services of the orders and directions made today.”
On 12 December 2003, Collier J made orders in the following terms:-
“Direct C/R [to] notify DOCS of adjournment in case they wish to intervene.” -(Yellow Sheet on File)
On 25 February 2004 the matter again came before Collier J. At that time, the parents were represented by Counsel, H was represented and there was an appearance on behalf of the Director General of the Department of Community Services. On 4 March 2004, Counsel for the Director General appeared before Collier J and indicated that the Director General did not seek to intervene in the proceedings. Collier J thus directed the matter to be listed for hearing. The matter came before the Court on 20 May 2004. The parents were represented by Counsel as was H.
Counsel for the child informed the Court that she supported the Application of the parents. There has thus been no opposition to the Application of the parents.
The parents’ Application is brought pursuant to the provisions of s 64B(6) and s 65B of the Family Law Act 1975 (Cth) (“the Act”), which provide:-
“Meaning of parenting order and related terms
To the extent (if at all) that a parenting order deals with any other aspect of parental responsibility for a child, the order is a specific issues order . A specific issues order may, for example, confer on a person (whether alone or jointly with another person) responsibility for the long-term care, welfare and development of the child or for the day-to-day care, welfare and development of the child.” (s 64B(6))
“Division does not apply to child maintenance orders
This Division does not apply to parenting orders to the extent that they consist of child maintenance orders. Child maintenance orders are dealt with in Division 7.” (s 65B)
The power of the Court to grant the relief sought by the parents was confirmed by the High Court in Secretary, Department of Health and Community Services v. J.W.B. and S.M.B. (1992) 175 CLR 218 (“Marion’s case”). In Marion’s case, the High Court, per Mason CJ, Dawson, Toohey, Gaudron and McHugh JJ, confirmed the jurisdiction of the Family Court “to authorise the sterilisation of a child in appropriate circumstances when an application is made”. It was further held in that case by Mason CJ, Dawson, Toohey and Gaudron JJ that authorisation of the sterilisation of a child fell outside the scope of the powers, rights and duties of guardians.
If it is appropriate in the circumstances to do so, the Court or a Guardianship Tribunal has the power to grant the relief sought by the parents of H and only if they obtain such authorisation can H’s parents submit H to the surgical procedure which they propose, namely a hysterectomy. There is no suggestion that the parents have applied to the Guardianship Tribunal.
In September 2003, the Australian Guardianship and Administration Committee (“AGAC”), a national body consisting of representatives from all relevant state and territory agencies associated with guardianship and related issues, issued a protocol providing guidance on the sterilisation of minors. The Protocol for Special Medical Procedures (Sterilisation) as amended on 25 March 2004, (“the Protocol”) defined sterilisation as “a surgical intervention that results either directly or indirectly in the termination of an individual’s capacity to reproduce” (paragraph 2.1). The expressions “sterilisation procedures” or “sterilisation treatments”, the procedures include, relevantly for present purposes, “hysterectomy”.
10. Protocol 4 provides:-
“Decision-making principles
4.1 The tribunal hearing the matter must be guided by the following principles:
a) Same human rights – The right of all persons to the same basic human rights regardless of a particular person’s capacity.
b) Individual value and autonomy – A person’s right to respect for his or her human worth and dignity as an individual.
c) Maximum participation, minimal limitations – a person’s right to participate, to the greatest extent practicable, in decisions affecting the person’s life.
d) The expressed wishes of the person to be considered – in so far as the person is capable of expressing a wish.
e) Encouragement of self-reliance and self management – The importance of encouraging and supporting a person to achieve his or her maximum physical, social, emotional and intellectual potential, and to become as self-reliant as practicable.
f) The least restrictive alternatives – 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.
g) Maintenance of existing supportive relationships – Considering the views of and impact on the decision for the person’s family and/or carers.
h) Maintenance of cultural environment and values – The importance of maintaining a person’s cultural environment and set of values, including any religious beliefs held by the person and/or the person’s parents or care givers.”
11. The Protocol provides that there are two substantive issues to be addressed in an Application such as the present. The “first threshold question” relates to capacity. It is apparent that, not having attained eighteen years of age, H may not have the capacity to consent to the sterilisation sought by her parents by their Application.
12. The provisions of Protocol 5.12 include:-
“In ordinary circumstances, the older the child, the more likely she or he will have capacity for the matter and be capable of giving valid consent. However, in deciding whether a child can consent to a special medical procedure such as sterilisation, the child’s capacity and maturity must be weighed against the seriousness of the treatment proposed.”
13. Protocol 5.13 further provides:-
“Neither a child nor an adult will be able to give valid consent to a sterilisation procedure if she or he is unable to understand the nature of the treatment, and also unable to attach appropriate significance to the risks and need for treatment.”
14. The “second threshold question” under the Protocol is whether sterilisation is required. Relevant in that regard are the following provisions of the Protocol:-
“5.16 The significant developments in the area of reproductive technology, including contraception and menstruation management, mean that there are a range of treatments and procedures available, all of which are less invasive and less permanent than sterilisation.
5.17 Accordingly, before considering sterilisation, all other alternative treatments should be considered, and, if appropriate, tried, before bringing an application for sterilisation.
5.18 Consequently, any person bringing an application to a tribunal for the sterilisation of a person must consider alternative and less invasive procedures and address this in their material; refer 5.6 above.
5.19 Depending on the content of the application and supporting material, the tribunal may also obtain an independent assessment of the alternative treatments or procedures available in the circumstances.
5.20 If the tribunal becomes satisfied that other less invasive options should be considered, the tribunal will notify the applicant and may require they consider such options and then provide further information to the tribunal about the utility or outcome of such alternative treatments or procedures.”
15. So far as the hearing is concerned, the Protocol suggests the standard of proof to be “not necessarily expressed in the same way in all jurisdiction, but the gravity of the matter must be taken into account, thereby affecting the standard no matter how expressed” (Protocol 5.25). The civil standard applies to the proceedings in this Court although both the provisions of Protocol 5.25 and the decision of the High Court in Briginshaw v Briginshaw (1938) 60 CLR 336 at 343 per Latham J and 360-363 per Dixon J are relevant.
16. Protocol 5.26 provides:-
“Where there is any conflict between this Protocol and the laws of any state or territory laws, the laws of the state or territory will prevail.”
17. It is necessary to have regard to the Family Law Rules 2004. Rule 4.09 is relevant in that regard. That Rule provides:-
“(1) If a Medical Procedure Application is filed, evidence must be given to satisfy the court that the proposed medical procedure is in the best interests of the child.
(2) The evidence must include evidence from a medical, psychological or other relevant expert witness that establishes the following:
(a) the exact nature and purpose of the proposed medical procedure;
(b) the particular condition of the child for which the procedure is required;
(c) the likely long-term physical, social and psychological effects of the procedure on the child:
(i) if the procedure is carried out; and
(ii) if the procedure is not carried out;
(d) the nature and degree of any risk to the child from the procedure;
(e) if alternative and less invasive treatment is available — the reason the procedure is recommended instead of the alternative treatments;
(f) that the procedure is necessary for the welfare of the child;
(g) if the child is capable of making an informed decision about the procedure — whether the child agrees to the procedure;
(h) if the child is incapable of making an informed decision about the procedure — that the child:
(i) is currently incapable of making an informed decision; and
(ii) is unlikely to develop sufficiently to be able to make an informed decision within the time in which the procedure should be carried out, or within the foreseeable future;
(i) whether the child's parents or carer agree to the procedure.
(3) The evidence may be given:
(a) in the form of an affidavit; or
(b) with the court's permission, orally.”
18. The Court proposes approaching the present application against this legislative background and in the light of the Protocol.
Material facts
19. Some material facts are appropriate to be stated as background to the parents’ Application. H’s mother was born in November 1958. She is accordingly 45 years old. H’s father was born in October 1960. He is thus 43 years of age. The parents married in November 1985.
20. H was born in 1991. Three days after her birth, H was diagnosed with Tuberous Sclerosis, a genetic disorder. In April 1991 H experienced seizures and was prescribed anti-convulsive medication. H has continued on anti-convulsive medication from that time to the present. In April 1991 H commenced physiotherapy.
21. The parents have two other children who were born in 1992 and 1998. Those children are currently and eleven and five.
22. In 1985 H commenced an early school program. From 1996 to 1999 H has attended a private school. In 1999 to the end of 2002, H attended another school which caters specifically for children with special needs.
23. In 1999 the parents first met with Dr W, a Paediatric Endocrinologist. The purpose of such meeting was to discuss probable future issues for H’s health likely to arise by reason of her genetic disorder.
24. In May 2000 the parents and H consulted with Professor T of the Department of Obstetrics and Gynaecology at the University of New South Wales.
25. In January 2003 H had her first menstrual period. In February of 2003 H commenced to attend a special high school. H continues to attend that school. From March 2003 to February 2004, H was under the care of Dr W who prescribed Microgynon 20 to be commenced after H’s second menstrual period. H suffered from recurrent break through bleeding and was prescribed Nordiol. That product apparently ceased to be manufactured shortly thereafter and Dr C, the family’s general medical practitioner, prescribed Microgynon 30 for H. Break through bleeding continued to be experienced. In November 2003 H experienced increased seizures associated with break through bleeds or menstrual periods.
Evidence before the Court
26. The procedural history of the application has been referred to above. It is convenient to deal with the evidence of the parents and then to the expert medical evidence which has been adduced on their behalf.
27. In her affidavit sworn on 16 October 2003, the mother detailed H’s developmental history. The current regime of specialist medical treatment being received by H, is that:-
“H receives treatment from the following specialties:-
a. Ear, Nose and Throat specialist – regular checkups and to date grommet tube in right ear which needs regular monitoring.
b. Ophthalmologist – eyes are checked for tubers. H’s medication can affect her sight so she has regular vision checks.
c. Neurologist – checks on her seizures and monitoring her medication.
d. Endocrinologist – checks H’s growth, her scoliosis and puberty.
e. Physiotherapist – regular checks on her back posture and sets exercise program.” (paragraph 17)
28. The mother further detailed the history of administration of contraceptive medication subsequent to H commencing to menstruate and the consequences of H taking such medication.
29. The mother described H’s seizures in the following terms:-
“In the lead up to the seizure commencing, H smacks her lips together and her tongue moves around her mouth. This then leads into jerking of her body and limbs – her arms extend out from her body in very forceful movements and she often hits her had against a table or the wall. These seizures have been taking place at all times during the day and as late as 6:00pm into the evening.” (paragraph 22)
30. The mother further deposed to H”s loss of control of her bladder when experiencing a seizure early in the morning (paragraph 23), to the fact that “these more serious tonic seizures” had only occurred after H commenced to menstruate.
31. The consequences of the commencement of tonic seizures, in terms of medication and H’s management were articulated by the mother in the following terms:-
“26. As a result of the commencement of these Tonic seizures we have increased the anti-convulsant medication Vigabatrin. Prior to suffering the Tonic seizures H was taking 3.5 tablets in the morning and evening. She now takes 4 tablets in the morning and evening (each table[t] is 500mg). Therefore she now takes 8 tablets per day or 4000mg. This medication can significantly affect a person’s vision. The increase in this medication appears to have assisted in reducing the number of Tonic seizures that H suffers.
27. H now weighs approximately 50kgs and it is extremely difficult to hold her up or help her to move to the bathroom.
28. H continues to be unsteady on her feet. She will hit or bump an object in her near vicinity especially those directly in front of her. H only last week fell over at school and as a result she has a severe graze from her forehead to her nose.”
32. Annexed to the mother’s affidavit were numerous school and medical reports. As there is later more specialist and specific information available in relation to certain of the matters discussed in such documents, it is unnecessary to refer in detail to a number of the reports attached to the mother’s affidavit. It emerges from Annexure V to the mother’s affidavit that in July 2002, after administration of various tests, H was assessed as being in the “moderate/severe range of intellectual disability”. Some appreciation of H’s level of academic achievement can be gained from the Semester One report (Annexure W) of the special school which H attends.
33. H’s father swore an affidavit corroborating the allegations of fact contained in the affidavit sworn by H’s mother.
34. Learned Counsel for the parents filed in Court an updated “witness statement” sworn by the mother on 20 May 2004. In that document the mother particularised H’s daily routine. It is apparent that H’s care requires substantial and consistent supervision which is provided by her parents. Under the heading “Medication Update”, the mother revealed:-
· After seeing Dr A 15/01/2004, H’s seizures occurred every 3-6 days with various degrees of intensity.
· A diary kept during this period from 15/01/2004 to 15/03/2004 indicates that each seizure on average was fairly moderate (Scale set at 1 (slight); 2 (moderate); 3 (intense)
· On the 16/03/2004 H began a new drug, as requested, called Diamox. Then three days later ceased the Pill (Microgynon 30) and 4 days later began her menstrual period. The first two days of her period H did have seizures (scale of 1 & 2). During the 10 days she was on Diamox seizures were evident.
· H then began the Microgynon 50 as requested (27/03/2004) and then had 3 days of significant seizure activity.
· H’s seizures have continued and on average are now every 2-3 days apart with the intensity around the moderate to intense.
· As of 15/05/2004 H has not had another period and still remains on the Microgynon 50.
· H still remains on the Anticonvulsant drugs – Epilim (Sodium Valporate – 5 tables morning and night) and Sabril (Vigabatrin – 4 tablets morning and 4.5 tablets at night).
35. The mother also detailed the difficulties associated with the administration of medication or compliance with prescribed or recommended medical procedures.
36. Dr A, Senior Lecturer, School of Paediatrics within the University of New South Wales, swore an affidavit on 21 March 2004. Annexed to Dr A’s affidavit were two reports, one dated 10 September 2001, the other dated 28 May 2002. Dr A suggested in his report of 28 May 2002 that “it is clear that H has at least moderate intellectual disability”, he was “certain she would be unable to care for a child if she were to become pregnant. Any children she had would have a 50% chance of having tuberous sclerosis, the severity of their disease is unpredictable”.
37. Dr A considered that H “would need to have her hygiene supervised and managed by a responsible adult during her periods. I doubt she would ever learn to deal with her periods without supervision”.
38. It is apparent that Dr A supports the current application in reliance upon his lengthy and substantial involvement in the management of H’s condition.
39. Dr W, of the Endocrinology Department at Sydney Children’s Hospital Randwick, and a lecturer in the school of Paediatrics at the University of New South Wales, swore an affidavit to which she attached a number of reports. The most recent of Dr W’s reports, that of 20 February 2004, referred to the Microgynon dosage prescribed by her. The reasons for doing so were detailed in the report. Microgynon 20 had been “unsuccessful in suppressing” H’s menstrual periods and she had “recurrent breakthrough bleeding” for which reason Dr W “changed her to Nordiol, which has 50mg of oestrogen as opposed to 20” and has “about twice the amount of progesterone as Microgynon 20”. H “did very well on this and had no breakthrough bleeding”. As the pharmaceutical company ceased to market Nordiol, H was again placed on Microgynon. This resulted in “trouble with breakthrough bleeding” and “increase seizure activity associated with breakthrough bleeds” from about November 2003.
40. Subsequent to that time, and a review by Dr A, “she has had a seizure about once every five or six days in no particular relationship to anything. She has continued to have some breakthrough bleeding”. Dr W was “still supportive” of H undergoing a hysterectomy but “emphasised” that if H has “hormone related seizures, a hysterectomy is unlikely to solve that”, noting that “no one is suggesting that she should have her ovaries removed”. Dr W concluded her report with a reference to changed medication and an expression of “hope that the [F]amily [C]ourt sees its way clear to authorise H’s hysterectomy”.
41. A further report from Dr W of 17 May 2004 was tendered in evidence on 20 May 2004. Dr W suggested that she:-
“… would not expect a physical presence or absence of a uterus to make any difference to the frequency of H’s seizures, unless the discomfort associated with menstruation contributed in some way. The presence or absence of administered sex steroid (oestrogen and progesterone, currently given in the form of an oral contraceptive pill) may make a difference to seizure frequency. If her seizures are in some way reactive to the circulating levels of sex steroid however, the cyclical production of oestrogen and progesterone from her own ovaries may also affect seizure frequency.”
42. It is apparent that Dr W supports the current application in reliance upon her lengthy and substantial involvement in the management of H’s condition.
43. Professor T, of the department of Obstetrics and Gynaecology at the School of Women and Children’s Health within the University of New South Wales, swore an affidavit to which he attached his report dated 24 February 2004. Professor T saw H in February of this year, in order to assess her for these proceedings. Professor T had been provided with a history of relevant previous specialist medical treatment of H. The mother attended the appointment with H and informed Professor T of the management implications of H’s condition.
44. Professor T referred to H as a “severely disabled young girl”. Professor T considered the various alternatives to surgical intervention in order to best manage the gynaecological implications of H’s condition. Professor T considered that “oral contraception in the present circumstances appears to be only partially successful”. The reasons he gave for that are detailed. Professor T concluded that:-
“Since H is on anti-epileptic medication, and will be for the rest of her life, it would be my view that oral contraception in the way that it has been used to date is likely to be associated with intermittent and unpredictable breakthrough bleeding and therefore probably of only short-term value.” (paragraph 1 c) ii))
45. He was:-
“… loathe to use a drug such as Depo-Provera on the grounds that its long term effects upon bone are not in H’s best interests at all and secondly, it is required to be given by injection, a process that I believe H finds quite unacceptable.” (paragraph 1 c) iii))
and considered that:-
“Buserelin and other drugs of this ilk could be used in the short term to suppress the functioning of her Pituitary gland but in doing so would be associated with profound reduction in oestrogen levels and the occurrence of osteoporosis and its attendant complications quite quickly in a young girl. Most of these drugs are given by injection, and of course there is documentary evidence that this is not the best way to give medication to H; with one exception that is an intranasal spray but not only does it have the disadvantages of the others in respect of her bones, it also needs to be administered daily.”
46. Professor T’s opinion with respect to laparoscopic tubal occlusion was that it would “only ensure that H does not become pregnant as a result of sexual assault, but will not in any way affect the frequency of menstruation or her inability to cope with it”.
47. Professor T considered the option of “Endometrial Ablations” (paragraph 1 c) vi)), suggesting in that regard:-
“This technique appears to work quite well in women in their 40s who have substantial bleeding problems and whose ovaries are quite clearly beginning to work less well than they used to. The re-establishment of menses in women in their 30s is a well-known complication of endometrial ablation and it would be my view that a young girl like this, whose ovaries are going to only work better and better for the next decade or two, would experience temporary relief from menstruation before menstruation would recommence. The scarring that can occur in the uterus from the endometrial ablation may well make repeat operations technically impossible, and in this instance we would be back where we started, although we may have gained a few years with which menstruation did not occur.” (paragraph 1 c) vi))
48. In Professor T’s opinion H “would be best served by a hysterectomy” in view of her history and the likely effectiveness of alternatives to such surgery. He considered that the operation:-
“… should, be performed laparoscopically since her post-operative management and indeed her post-operative recovery need to be given careful consideration. A formal laparotomy (opening the abdomen) for the removal of her uterus, but not her ovaries, would result in substantial post-operative pain and given her disability, significant nursing difficulties. The post-operative recovery from a laparotomy is very considerably longer than would be expected from a laparoscopic procedure and the latter therefore would be my recommendation in terms of the technique to be used. There can be no question that her ovaries should remain and that their production of oestrogen for the next four decades will be of tremendous benefit to H.” (paragraph 1 c) vii))
49. Professor T elaborated on the probable outcome of a hysterectomy, suggesting:-
“A laparoscopic hysterectomy will be associated with a relatively short stay in hospital and significantly less post-operative pain (and therefore easier management) than a formal laparotomy. The result will be complete absence of menstruation and this will undoubtedly be of benefit to H who already appears to have substantial difficulties with cleanliness following defaecation and micturition. As a by-product of an absence of her uterus H will never become pregnant. Given the genetic nature of her disorder and the 50% inheritance risk thereof, this would in my view be of great benefit to H.” (paragraph 1 d))
50. He further suggested:-
“The procedure itself, not unlike any other, is not a riskless procedure. In the hands of experts the risks of intraoperative complications are very low indeed, but nonetheless need to be taken into account. Laparoscopy is an operative procedure wherein the introduction of instruments into the peritoneal cavity is a blind procedure until the telescope is introduced, and as such there is the possibility (1:1,000) of inadvertent damage to an intra-abdominal structure. As I have pointed out, in the hands of experts this risk is very low indeed but nevertheless needs to be recognised. Similarly anaesthetic risks need to be considered with every anaesthetic that is to be a planned elective procedure, these risks are very small indeed. It would be my view that the advantages of the proposed procedure far outweigh any possible disadvantages of the above-mentioned risks.” (paragraph 1 e))
51. Professor T supported the parents’ Application, suggesting, in summary, that:-
“… the continuous use of oral contraception is currently being managed with some difficulty by H and her mother, despite which there have been episodes of breakthrough bleeding, and I think it would be safe to predict that there will continue to be a number of episodes each year in the future. H has been unable to grasp the concept of cleanliness to date and I would expect that Dr [A] would be of the view that she is unlikely to ever be able to grasp this concept in the future. The majority of options available to control menstruation are in my view either contra-indicated in H or likely to be of only short-term benefit, and it would be my recommendation that she would be best served by a hysterectomy. I would therefore be supportive of the parent’s [sic] application.”
52. Professor E, of the Centre for Behavioural Sciences, Department of Medicine within the University of Sydney, prepared a report based upon a consultation with H and her mother on 23 January 2004. As is evident from Professor E’s report, the mother was not present throughout all of the interviewing and testing processes which Professor E conducted on that day.
53. Professor E concluded:-
“At the time of assessment, H was aged 12 years and 11 months, a quite girl who functions in the moderate to severe range of intellectual disability. Overall, her abilities are around about those of a two year old. She has only recently become toilet trained (at the age of nine) and still has some difficulty with toileting, being unable to wipe herself, for example, or to remember to wash her hands.” (page 5)
54. She was of the opinion that H was “unable to understand the nature and effect of the proposed procedure or to give informed consent to the hysterectomy”. In Professor E’s opinion “she will not be able to give such consent in the future”. Professor E was of the opinion that H would always “need close supervision and care, on a 24 hour basis”.
55. Outlined in the following passages of that part of her report were the matters which Professor E would not expect H to be able to be able to manage without supervision in the future, the most significant of those being that it was “highly unlikely that H would [ever] achieve independence in the management of menstruation”. Professor E concluded that H had “no understanding or knowledge of sexuality that I could determine”, that she had “no understanding of sexual relationships or of pregnancy”, a situation which she considered would “remain the case for the remainder of H’s life”.
56. Professor E considered that H’s “understanding of sexuality would not be improved by any educational program, and she would never be able to understand the complexity of sexual intercourse, sexual relations, or consent to sexual activity”. Professor E concluded that H’s “quality of life would be marginally improved by authorisation of the procedure of hysterectomy”. She further said that:-
“… both in the short term and the long term for H, her life would be simpler, and she would have more opportunities for social interactions if she were not having menstrual periods. Furthermore, although this is not my area of expertise, her long term health may be affected by decades of taking contraceptive medication to control her menstrual periods. From a social management point of view, it is easier for H and her carers if she has one fewer medication that needs to be administered, and from which she may suffer side-effects.” (page 6)
57. Professor E’s recommendation was expressed in the following terms:-
“In my opinion, H’s quality of life in terms of her social and psychological interactions, her own comfort, and any future small gains in independence that she may make, would be enhanced by an Order authorising hysterectomy for her. Not authorising the procedure would result in H having to take an extra medication, which is having an effect on her body, as well as creating an extra responsibility for her family, particularly her mother. She tends to suffer from unexpected breakthrough bleeding, which could have social implications for her, particularly if she were rejected by her friends, or by services, or strangers as a result of her inability to manage her menstrual hygiene adequately. She suffers from some discomfort, and regards the menstrual blood as “yuk”. If she were to be the victim of sexual assault, and to become pregnant, this would be a very complicated situation, both ethically and medically. The hysterectomy would remove the chance of an unwanted pregnancy and further medical complications associated with a pregnancy.” (page 7)
58. Her conclusion was that:-
“H cannot express a view herself, and in my opinion she would never be able to understand the issues sufficiently to be able to express a view about pregnancy or a proposed hysterectomy. She is unable ever to comprehend the notion of having a child. In my opinion the proposed hysterectomy would be one small step towards making her life less complicated and more enjoyable for her and her family, presently, and also in the long term.” (page 7)
59. None of the evidence detailed above has been challenged either by cross-examination or other contrary accounts or opinions. As a reading of the qualifications of the expert medical practitioners establishes beyond doubt, it is difficult to imagine that a more impressive or authoritative array of medical expertise could have been focussed on the issue ranged in these proceedings than has been provided through the expert evidence before the Court. It is open to the Court to accept the evidence, both lay and expert. Indeed, to do other than accept that evidence would, in the circumstances, be perverse.
Discussion
60. Considering the two questions which the Protocol renders relevant, and addressing those questions with the dicta of the High Court firmly in mind, it is necessary to determine the issue of capacity to consent.
61. The evidence establishes beyond doubt that H does not have the intellectual capacity to consent to a hysterectomy. The expert evidence further establishes that it is improbable that H will ever have the intellectual capacity, whatever her chronological age, to give an informed consent to a hysterectomy. Objectively, the task of weighing H’s “capacity and maturity” against “the seriousness of the treatment proposed” cannot be realistically undertaken. The evidence places H within the terms of Protocol 5.13 in that she is “unable to understand the nature of the treatment and also unable to attach appropriate significance to the risks and need for treatment”.
62. Protocol 5.14 might be thought of relevance in a case such as this. That Protocol provides:-
“It may also be relevant to consider if the person is, or may be, affected by the differing views of his or her carers such that the person is caught in the dispute and may be influenced by the wishes, views or opinions of others.”
63. It is probable that H’s parents, who clearly are charged with and undertake the day to day onerous responsibility of caring for H may find that task somewhat less onerous if H undergoes a hysterectomy. The evidence does not establish that any part of the motivation for the parents’ Application relates to personal gain or advantage of any kind. The Court accepts that the sole motivation of the parents is the welfare of H. Even so, it is somewhat simplistic to ignore the reality that the parents undertaking the care of a child such as H ought not be obliged to shoulder difficulties and burdens beyond those which are needlessly onerous. The test is not the best interests of the parents but of H, but, assisting her parents to care for H must be seen as realistically enhancing the care H receives and corresponding enjoyment of life which she may expect. H is not able to understand this Application, much less be caught in it or be influenced by the wishes, views or opinions of others.
64. The Court concludes, in reliance upon the evidence outlined earlier, that H does not have and is unlikely to ever have the capacity to consent to a hysterectomy.
65. The second threshold question remains to be addressed. The requirements of Protocols 5.16 – 5.18 have clearly been addressed, albeit, rather than by “trying” “all other alternative treatments”, appropriate expert opinions of the highest possible calibre have been sought and obtained. The Court is able to be satisfied on the evidence that any “alternative and less invasive procedures” would, on all the expert evidence before the Court, be less than satisfactory.
66. Nothing revealed by the evidence would incline the Court to act pursuant to the terms of Protocol 5.19. Approaching the issue pursuant to the provisions of the Protocol, and having regard to the standard of proof appropriate to an issue as grave as that which this Application raises, the Court would be satisfied that the proposed laparoscopic hysterectomy, which will result in sterilisation of H, is “required”.
67. Whilst the Court cannot discern any “conflict” between Rule 4.09 and the Protocol, and concludes by considering the evidence in light of the Protocol that the parents’ application should be granted, it is necessary for the Court to make findings in the terms envisaged by Rule 4.09 if the order sought is to be granted.
68. Each of learned Counsel for the parents and the child has, in thorough written submissions, addressed each of the provisions of Rule 4.09. The Court is indebted to learned Counsel for the such assistance. The Court’s conclusions with respect to the provisions of Rule 4.09 are as follows:-
“a. The exact nature and purpose of the proposed medical procedure.
It is proposed that H undergo a laparoscopic hysterectomy in order to prevent menstruation.
b. The particular condition of the child for which the procedure is required.
H suffers from Tuberous Sclerosis, a genetic disorder. This has caused her to suffer from an intellectual disability which is moderate to severe, her overall abilities are those of an approximately two year old child (as assessed by Associate Professor [E]). H has suffered from seizures since she was six weeks of age.
H commenced menstruating in January 2003.
H was not toilet trained until she was nine years old and she still requires assistance with toileting. H appears to have no understanding of menstruation, use of sanitary pads, hygiene. The report of Associate Professor [E] suggests that H will “never achieve independence in the management of menstruation” p.6
c. The likely long-term physical, social and psychological effects of the procedure on the child;
i.If the procedure is carried out;
Professor [T] assesses a hysterectomy as the only procedure or treatment that will result in a complete absence of menstruation. This will provide H with long term benefits with respect to hygiene.
It is not proposed that H’s ovaries be removed so that she will continue to benefit from the natural production of oestrogen.
H is already required to take medication, of eight tablets per day, to control her seizures. The anti-convulsive medication that H takes can interfere with the absorption of the contraceptive pill.
H does not readily take medication and it requires diligence by her care-giver to ensure that H swallows the medication. “From a social management point of view, it is easier for H and her carers if she has one fewer medication that needs to be administered, and from which she may suffer side-effects.” Associate Professor [E] p. 6
The proposed treatment will improve “H’s quality of life in terms of her social and psychological interactions, her own comfort, and any future small gains in independence that she may make, would be enhanced by an order authorising hysterectomy of her.” Associate Professor [E] p. 7
As H cannot manage her own menstruation she will always require assistance with day to day management. H would have more opportunities for social interactions if the procedure is carried out. Associate Professor [E] p.6.
ii.If the procedure is not carried out.
H will likely continue to be on high oestrogen doses of the oral contraceptive pill. This is not a long term solution to resolving H’s menstruation. There are consequences for H of continuing on the oral contraceptive pill for a likely period of about 40 years.
Given H’s limited level of functioning and understanding her quality of life will diminish if the procedure is not carried out.
d. The nature and degree of any risk to the child of the procedure
In performing a laparoscopic hysterectomy, there is a possibility (1:1000) of inadvertent damage to an intra-abdominal structure. This is considered by Professor [T] to be a low risk when the operation is conducted by experienced practitioners.
Administering an anaesthetic carries a risk but in a planned elective procedure and with expert medical care the risk[s] are assessed by Professor [T] as very small.
There is unlikely to be any psychological impact of the procedure on H as she has no understanding of the nature of the procedure.
e. If alternative and less invasive treatment is available – the reason that the procedure is recommended instead of the alternative treatments.
H has already commenced treatment prescription of oral contraceptives. It has not been possible to prevent breakthrough bleeding, and in any event it is likely that she will require a break from the oral contraceptive every six months.
The dosage has been increased on three occasions, and she is now on a high dose oestrogen pill. This has implications for her overall health.
Professor [T] deals with the options for menstrual management available for H including oral contraception, Depo-Provera, drugs which suppress the functioning of her pituitary gland, endometrial ablation and hysterectomy. The alternate options available to a hysterectomy, to control menstruation are either contra-indicated in H or likely to be of only short term benefit. He concludes that a laparoscopic hysterectomy would best meet H’s needs.
f. That the procedure is necessary for the welfare of the child.
H has been independently assessed by Associate Professor [E] and Professor [T]. They concur that a laparoscopic hysterectomy is the only option to meet H’s short and long term needs.
Associate Professor [E] concludes that the procedure would be a “small step towards making her life less complicated and more enjoyable for her and her family, presently, and also in the long term.”
g. If the child is capable of making an informed decision about the procedure – whether the child agrees to the procedure.
Associate Professor [E] assesses that H cannot comprehend the procedure, nor express any views in relation to the hysterectomy. H is assessed as not having the ability for abstract thought such that she could understand the procedure or the consequences of it.
h. if the child is incapable of making an informed decision about the procedure – that the child:
i.Is currently incapable of making an informed decision; and
ii.Is unlikely to develop sufficiently to make an informed decision within the time the procedure should be carried out, or in the foreseeable future.
H has been assessed by Associate Professor [E] [as] having an overall functioning of about two years of age. There has been no alteration in H’s capacity for eighteen months and it has been assessed that there will be no improvement in H in the future.
i. Whether the child’s parents or carer agree to the procedure.
The application before the Court was brought jointly by H’s parents. The evidence before the Court is that the parent’s [sic] agree to the procedure. H’s parents are her carers.” (Case Outline of Child’s Representative, pages 3-6)
Conclusion
69. On the evidence before the Court, the parents’ Application is entitled to succeed. The evidence before the Court satisfies the requirements of both the Protocol of 25 March 2004 and the Family Law Rules 2004. The Court has accordingly granted the Application.
I certify that these 69 paragraphs are a true copy of the Reasons for Judgment herein of
I.R. Coleman J.
Associate
Date:02/06/04
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