HGL
[2011] QCAT 334
•11 July 2011
| CITATION: | HGL [2011] QCAT 334 |
| PARTIES: | HGL |
| APPLICATION NUMBER: | GAA7825-10 |
| MATTER TYPE: | Guardianship and administration matters for adults |
| HEARING DATE: | 23 March 2011 and 7 June 2011 |
| HEARD AT: | Brisbane |
| DECISION OF: | C Endicott, senior member, Dr R Stafford, member |
| DELIVERED ON: | 11 July 2011 |
| DELIVERED AT: | Brisbane |
ORDERS MADE: | Application for consent to special health care (sterilisation) is dismissed |
| CATCHWORDS : | GUARDIANSHIP – special health care – sterilisation – where adult has problems with menstruation – where sterilisation not only practicable way of overcoming problems – where alternative form of health care to sterilisation – where nature and extent of significant risks in proposed and alternative forms of health care |
APPEARANCES and REPRESENTATION (if any):
| ADULT: | HGL represented by Ms J Glover of Legal Aid Queensland as appointed representative for HGL |
| OTHER ACTIVE PARTIES: | HD, mother of HGL, HA, stepfather of HGL |
REASONS FOR DECISION
An application has been made to the tribunal for consent to special health care. HGL turned 18 years of age in January 2011. HGL has severe congenital medical conditions and other medical conditions diagnosed as microcephaly with cerebral agenesis, cerebral palsy, epilepsy, significant gastro-oesophageal reflux and dysmotility, a need for a gastrostomy and fundoplication and a colostomy, renal disease, severe scoliosis and osteopaenia.
HGL is confined to a wheelchair and requires full time 24 hour a day care. Her mother and stepfather are HGL’s main care providers. HGL is severely intellectually and physically disabled and has, over the past few years, had several life threatening respiratory tract illnesses. According to Dr David Wood, who was HGL’s paediatrician for nine years, her life expectancy is indeterminate with a maximum of the next few years.
HGL has global developmental delay and did not commence menstruation until she was 17 years old in mid 2010. She experienced heavy bleeding with the onset of her periods and under the care of her doctors, this was alleviated with hormone medication, Primolut N. Concerns were expressed by her general medical practitioner, Dr Armstrong, that continued use of this medication increases the risk of thrombosis and a recommendation was made by both Dr Armstrong and Dr Yared, a gynaecologist, that HGL should have a hysterectomy.
HGL’s mother applied to the tribunal for consent to sterilisation. The tribunal appointed a lawyer from the Legal Aid Office as HGL’s representative to represent her views, wishes and interests. The tribunal conducted a hearing of the special health care application over two days and received evidence from her treating doctors, from expert medical specialists consulted for the purpose of providing independent expert evidence and from HGL’s parents. HGL’s representative provided submissions about HGL’s interests but was unable to present her views and wishes due to the severity of HGL’s intellectual impairment and an absence of communication skills.
The legislative framework for the consideration of this application is found in section 70 of the Guardianship and Administration Act 2000. It is provided, relevant to this case, that the tribunal may give consent for an adult with impaired capacity to undergo sterilisation if the tribunal is satisfied that sterilisation is medically necessary or if the adult has problems with menstruation and cessation of menstruation by sterilisation is the only practical way of overcoming the problems. In addition the tribunal must be satisfied that sterilisation cannot reasonably be postponed and the adult is unlikely in the foreseeable future to have capacity for decisions about sterilisation.
Section 70 also requires the tribunal to take into account, when deciding whether to consent to a sterilisation procedure, whether there are alternative forms of health care available or likely to become available in the foreseeable future and the nature and extent of short-term or long-term significant risks associated with the proposed procedure and available alternative forms of health care, including other sterilisation procedures.
The tribunal accepted evidence that HGL has a severe intellectual impairment and is non verbal. HGL was present on 23 March 2011 but she did not in any apparent manner take part in or respond to the matters being discussed.
The Guardianship and Administration Act 2000 defines decision making capacity for a matter as a person being capable of-
(a) understanding the nature and effect of decisions about the matter; and
(b) freely and voluntarily making decisions about the matter; and
(c) communicating the decisions in some way.
The tribunal was satisfied from the evidence that HGL would not be capable of understanding information about the various alternative methods that may be used to manage her menstrual periods, that she would not be capable of making a choice between the options available to her for menstrual management or anticipating the risks involved in those respective options, that she would not be capable of understanding the likely effects that various medication or medical procedures could have on her wellbeing and general functioning, and she would not be capable of understanding the consequences of undergoing a sterilisation procedure.
[10] The evidence provided to the tribunal from HGL’s mother, from her general medical practitioner, Dr Armstrong and from her paediatrician, Dr Wood, rebutted the presumption that HGL had capacity to consent to sterilisation. The tribunal concluded that HGL had impaired capacity for a decision about sterilisation.
[11] Turning to the other issues for determination in this application, a great deal of information was provided to the tribunal as to the problems that HGL has experienced with menstruation and the ways in which those problems have been addressed so far. It is useful to set out a short history of those matters in order to appreciate the context in which this application has been made.
[12] HGL had menstrual irregularity, her bleeding was heavy and prolonged and after a failed attempt to control the bleeding with Depo-Provera injections, HGL was prescribed Primolut N to stop her periods. HGL did not understand what was happening to her when she used to have menstrual bleeding and she became very distressed and panicky. When she was bleeding, her iron levels were depleted and she had to take iron supplements which caused constipation and which affected her gastro-intestinal tract.
[13] Primolut N has been successful in stopping the periods each month and there has been virtually no break through bleeding. HGL’s treating general medical practitioner advised that continued hormone treatment increased the risk of thrombosis and described the use of such treatment as a short term answer to HGL’s problems with menstruation.
[14] Even with the bleeding controlled by medication, HGL experiences other impacts on her wellbeing each month described as being irritable, more emotional and moody, having abdominal pain, tiring easily but having poor sleep, not eating properly and becoming pale. HD has also stated that her daughter produces excess phlegm in her respiratory tract.
[15] HD gave evidence that she noticed that her daughter had an increase in epileptic seizures after commencing on Primolut N. She does not have major fits but she has episodes where her eyes roll back and her body shakes. These episodes last for 10 to 15 seconds. The dosage of Epilim has been increased to respond to these developments. This increased seizure activity has not been witnessed by her treating doctors but the accounts of changed behaviour given by her parents including seizure type activity and increased moodiness are accepted by her doctors and by the tribunal.
[16] From this history, there emerged the following issues to consider: whether continuation of Primolut N interfered with the efficacy of the anti-epileptic medication being administered to HGL and whether continuation of Primolut N would give rise to an increased risk of life threatening thrombosis?
[17] Dr Taylor, a gynaecologist engaged by HGL’s representative to provide independent expert evidence to the tribunal, reported on 25 January 2011 that HGL’s seizures had been worse since she has been on Primolut N. Dr Taylor reported that Primolut N has an interaction with Epilim (valproic acid, an anticonvulsant which causes liver enzyme induction) in that it decreases the efficacy of the valproic acid and derivatives and so is likely to result in worsening of HGL’s seizures.
[18] However, Dr Armstrong gave evidence in a report dated 25 March 2011 that HGL’s Epilim level is now within normal range and that HGL’s epilepsy is controlled. Dr Armstrong expressed an opinion that the decrease in serum Epilim was likely due to HGL’s growth (increase in weight noted of about 7 kilograms) and not interaction with Primolut N. Both Dr Armstrong and HGL’s mother confirmed on 7 June 2011 that HGL’s epilepsy was well controlled on the higher dose of Epilim. The opinion expressed by Dr Taylor has not been borne out by the evidence of Dr Armstrong and HD.
[19] The first issue identified in paragraph 16 is therefore answered on the basis that continuation of Primolut N would not interfere with the efficacy of the anti-epileptic medication being administered to HGL.
[20] Dr Armstrong had originally raised concerns about the increased risks of deep vein thrombosis associated with the long term use of Primolut N. Dr Armstrong in a report dated 25 November 2010 noted that HGL is immobile and continued hormone treatment increases her risk of thrombosis.
[21] Dr Taylor did not express concerns about the increased risks of thrombosis associated with long term use of Primolut N in her report dated 25 January 2011. In her oral evidence given on 23 March 2011 Dr Taylor considered that, given HGL’s life expectancy and the continued use of Primolut N, it was possible that there would be eventually some breakthrough bleeding and the dosage of Primolut N would have to be increased. More side effects from the medication would then occur, such as mood changes, and would have to be taken into account when looking at the options for treatment.
[22] Dr Taylor acknowledged on 23 March 2011 that the risk of HGL developing deep vein thrombosis was a pre-existing risk and that there would be risks associated with HGL undergoing anaesthetics and surgery. Dr Taylor expressed the opinion that the risks of surgery were evenly weighed with the risk of ongoing menstrual management by the use of Primolut N.
[23] In a subsequent report dated 28 March 2011, Dr Taylor gave some additional comments to clarify her oral evidence. The comments relevant to the issue of risks from deep vein thrombosis were: “…I was asked about the risk of thromboembolic disease with Primolut N. I replied that this was not my major concern with this medication. HGL’s immobile state gives her an increased baseline risk of DVT. The small, but present, increase in risk with Primolut N therefore puts her into a higher risk category. I was trying to make the point that there are other issues, e.g. her epilepsy control and other side effects, which are solely caused by the Primolut N without other contributing factors, rather than her DVT risk, which is present regardless of whether she is on the medication or not. The additional slight increase in risk of DVT from the Primolut N therefore makes her overall risk of DVT in the long term significant.”
[24] The tribunal was provided with expert evidence about the risks of thrombosis by a physician, Dr Forgan-Smith. In a report dated 4 April 2011, Dr Forgan-Smith stated an opinion that her immobility and poor muscular development in her legs will increase HGL’s risk of deep vein thrombosis. This risk was described as moderate.
[25] In response to the question “Does being on Primolut N cause such a significant increase in risk of DVT that Primolut N should be medically ceased in light of HGL’s multiple medical conditions?” Dr Forgan-Smith stated: “Primolut, Norethlesterone is a Progesterone. Although in the product information, it lists increased risk of thrombo-emboli, the risk is modest. A study published in 2004 concluded that the use of Norethlesterone does not predispose to thrombogenesis. “
[26] In response to the question “Is HGL’s risk of DVT undergoing gallbladder and hysterectomy surgery greater than the risk of continuing Primolut N?” Dr Forgan-Smith stated: “The tissue trauma of surgery will predispose her to DVT. I think on probabilities, the risk of DVT would be higher due to surgery than due to Primolut N.”
[27] After reflecting on the opinion of Dr Forgan-Smith, Dr Armstrong informed the tribunal in a report dated 6 April 2011 that the risk of thrombogenesis can be proactively managed during surgery with anti-coagulant medication and compressive stockings. She stated that even a slight or modest risk of increased thrombogenesis can put HGL at risk of pulmonary or cerebral thrombosis and cause lifelong medical problems and the need for lifelong anticoagulation.
[28] Also reflecting further on the risks of thrombosis, Dr Taylor in a report dated 5 April 2011 stated: “The risk of DVT in HGL is present, regardless of whether she remains on medication, has surgery, or does nothing. The risk of DVT post surgery is decreased by the routine use of subcutaneous anticoagulation such as Clexane. …. HGL’s immobility increases her risk of DVT on its own, and so any additional risk, even if minute from the Primolut N, is a risk which is greater than that conferred by surgery with routine anticoagulation post operatively.”
[29] A similar opinion was expressed by Dr Wood who in a report dated 13 April 2011 stated: “The specific point of Dr Armstrong’s letter is that HGL at all stages while on Primolut is at risk of thrombogenesis. This, of course, is of greater risk with HGL as she is not mobile. The subsequent risk, apart from the localised effects of thrombosis, would be a pulmonary or a cerebral embolism with its subsequent catastrophic events.”
[30] Lastly Dr Yared, HGL’s gynaecologist, stated in a report dated 3 May 2011: “I agree that hysterectomy is associated with an increased risk of Deep Vein Thrombosis (DVT) and even Pulmonary Embolism, a potentially fatal complication. All surgery carries a risk and abdominal/pelvic surgery in particular is associated with an increased risk of DVT compared for instance with a shoulder operation. One of the major factors leading to a DVT is immobility after the operation, and I agree that HGL, with her limited physical abilities, is more at risk than someone who is up and out of bed the next day. However the risk of DVT can be minimised (but not completely removed) by the use of compression stockings, segmental compression devices…and a blood thinning agent involving a small subcutaneous injection, given daily while in hospital.”
[31] Dr Yared went on to state: “Primolut N is a progestogen and has been used in gynaecologic practice for years because of its ability to control bleeding from the uterus….I would agree that the risk of a DVT from Primolut N would be less than from surgery, but will that still be the case on 10, 15 or 20 years time? The response of the uterus to Primolut N controlling bleeding is often dose-dependent. HGL might only need one tablet of Primolut N to control her periods, but as she gets older she may need more, for example up to three tablets a day. Over many years does this increase the risk of DVT that we know is associated in a very mild sense with the use of Primolut?....In summary, while Primolut N is on balance associated with a lower risk of a DVT compared with surgery, it will need careful administration for many years to come to control her periods, possibly until her ovaries stop producing eggs and there is no reason to believe that that may not occur until she approximately 50 yrs of age.”
[32] It is quite apparent that there is somewhat of a diversity of expression used by the medical witnesses in this case on whether continuation on Primolut N would give rise to an increased risk of life threatening thrombosis. The risks of the development of thrombosis in HGL have been commented on by a physician, a paediatrician, two gynaecologists and a general medical practitioner.
[33] There is some general commonality in their respective opinions: all the doctors agreed that HGL has a risk of developing thrombosis due to her immobility. That risk is best described as a moderate risk. There is an increased risk of developing thrombosis with the use of Primolut N with that increased risk being described as slight, small, minute, modest or very mild. The increased risk is associated with long term use of Primolut N.
[34] The essential point of difference in the opinions expressed by Dr Forgan-Smith and by Dr Armstrong and Dr Taylor does not arise at this stage of consideration of the evidence. It is reasonable to conclude from the evidence that continuation on Primolut N would give rise to an increased risk of life threatening thrombosis. The difference of opinion about the level of increased risk of thrombosis associated with the use of Primolut N appears to be more a difference of semantics than a difference of substance.
[35] The crux of the issue to be determined, and where the expert evidence diverges, is whether the continuation of the use of Primolut N is nevertheless a practicable way of overcoming HGL’s problems with menstruation. If it is, then the option of using a hysterectomy to overcome the problems cannot be found to be the only practicable way to proceed.
[36] The use of Primolut N results in the control of menstrual bleeding but according to Dr Taylor the medication has caused HGL to have side effects such as fluid retention, bloating, ongoing distress and a decreased quality of life. Dr Armstrong refers to HGL manifesting increased moodiness. The evidence about all these side effects has come from HD. The evidence from HD is however ambiguous: she has identified the onset of HGL’s moodiness with the onset of her periods not necessarily with the commencement of Primolut N. The published list of adverse reactions or side effects of Primolut N does not include moodiness although side effects for other progestogens can include nervousness, depression and premenstrual type depression. Dr Forgan-Smith, when asked to comment on these symptoms, stated “Causation is impossible to prove objectively”.
[37] HGL cannot give evidence as to whether she experiences distress, moodiness or a decreased quality of life as a consequence of taking Primolut N to control her periods. The tribunal does not find the evidence satisfactory about the purported side effects that this medication causes to HGL. Some of the reported side effects are not recognised effects of Primolut N in the material provided to the tribunal by Dr Taylor and others may be the result of hormonal changes after puberty, or caused by other significant medical disorders or other medication taken by HGL.
[38] The most compelling argument as far as the tribunal is concerned against the continued use of Primolut N as a practical way of overcoming problems with menstruation comes from the increased risk of thrombosis and whether that risk outweighs the risk of surgical intervention. There was a consensus of medical opinion that there is a risk of developing thrombosis from undergoing a hysterectomy. There was also consensus that the risk of thrombosis from surgery is either greater than or equal to the risk of thrombosis from use of Primolut N.
[39] However, it was acknowledged that the risks of thrombosis from surgery can be lowered by active intervention during and post surgery. Taking that point into account, Dr Armstrong, Dr Taylor and Dr Wood considered that the relative risks of serious harm from thrombosis were lower with surgery than with the continued long term use of Primolut N.
[40] Dr Forgan-Smith considered that surgery posed higher risks of thrombosis than the continued use of Primolut N. Dr Yared also expressed that view after he became aware that HGL’s life expectancy was under 10 years. Dr Forgan-Smith, and Dr Yared at the end of the hearing, supported the use of Primolut N as a practical way of overcoming HGL’s problems with her periods.
[41] The tribunal prefers the evidence given by Dr Forgan-Smith as he is a physician with expertise as to the effects of medication on the functioning of the whole of the bodily systems. He has endorsed the continued use of Primolut N as the preferred method of controlling HGL’s periods over a hysterectomy at this point in time.
[42] The evidence supports a conclusion that the continued use of Primolut N is a practicable way of overcoming HGL’s problems with menstruation. In view of this conclusion, the tribunal is unable to be satisfied under section 70(1)(a)(iii) that sterilisation is the only practicable way of overcoming HGL’s problems with menstruation.
[43] Evidence was given by Dr Taylor and Dr Yared that a hysterectomy was medically necessary for HGL. This opinion was not based on the presence of any morbidity in the uterus or reproductive system. The opinion was expressed to be based on quality of life issues. Dr Taylor stated that HGL has a limited quality of life compared to most of the population of her age group; what quality she has is impaired by the distress she demonstrates to her carers when she has periods; the increase in seizures also impacts on the quality of life as does the medication she takes to control her periods.
[44] The tribunal does not accept the cogency of the reasons expressed by Dr Taylor in reaching her conclusion that a hysterectomy is medically necessary because of the deleterious impact that her periods have on HGL’s quality of life. The causation for the distress or moodiness noted by HGL’s mother cannot be objectively proven. There was no evidence of observed distress or moodiness from other carers outside her home where HGL spends regular time. While her periods or the medication she takes to control her periods may cause some emotional reactions, any distress or moodiness may just as likely to be caused by her other medical conditions or by non specific psychological factors associated with HGL’s severe disabilities. This is not a case where the sight of bleeding or apprehension of bleeding causes distress as the combined impact of HGL’s blindness, wearing of incontinence pads and her severe intellectual disability prevents that level of insight into the physical aspect of menstruation.
[45] Dr Yared in a report dated 24 December 2010 stated that a hysterectomy would be in HGL’s best interests because in his experience young women with similar disabilities often have cyclic changes in behaviour associated with their periods which makes looking after them very difficult for their carers. Dr Yared stated: “I believe the sterilisation/hysterectomy is medically necessary for, if nothing else, quality of life for HGL and for her carers to be able to look after her properly especially in relation to personal hygiene.” Dr Yared further stated that no other alternative treatments are available because they have already been tried unsuccessfully.
[46] Dr Yared’s views underwent a material change before the conclusion of the hearing on 7 June 2011. He accepted that there was an alternative treatment that was being successfully used and that that treatment would have fewer risks for HGL than proceeding with a hysterectomy. The tribunal considered that the oral evidence from Dr Yared so qualified his written reports that it was not appropriate to take into account his former view that a hysterectomy was medically necessary.
[47] After reviewing all the evidence, the tribunal was unable to reach the conclusion that a hysterectomy or other sterilisation procedure was medically necessary in terms of section 70(1)(a)(i). The application for consent to special health care must be dismissed as the criteria for consent to sterilisation in section 70 has not been met.
[48] The tribunal appreciates that this outcome will be a disappointment for the applicant. It is acknowledged that HD and her husband are devoted carers of their daughter and have only her best interests at heart. However the criteria in the Act are expressed in specific terms of what is medical necessary or there being only one practicable way of overcoming menstruation problems and not specified in terms of finding what may be in the best interests of an adult with impaired capacity. This has been a very challenging case and it has been decided on the evidence available to the tribunal.
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