QMN

[2022] NSWCATGD 24

NSW Civil and Administrative Tribunal

New South Wales

Medium Neutral Citation:

QMN [2022] NSWCATGD 24

Hearing dates:

24 August 2022

Date of orders:

24 August 2022

Decision date:

24 August 2022

Jurisdiction:

Guardianship Division

Before:

R H Booby, Senior Member (Legal)
Dr B McPhee, Senior Member (Professional)
J L Newman, General Member (Community)

Decision:

The Tribunal consents to the following special medical treatment being provided to QMN:

Total laparoscopic hysterectomy and if necessary abdominal hysterectomy under general anaesthetic and any necessary treatment that would normally be provided in association with or directly consequent upon the above treatment.

This consent is effective for a period of 12 month(s) from the date of this order.

KAN is joined as a party as the Carer of QMN.

Catchwords:

CONSENT TO MEDICAL TREATMENT – application for consent to special medical treatment – total laparoscopic hysterectomy and if necessary abdominal hysterectomy under general anaesthetic –20-year-old woman with Rett syndrome – patient not able to understand the effects of the treatment – patient not able to provide informed consent – procedure will result in permanent infertility – whether treatment is the most appropriate form to promote health and well-being – whether proposed treatment is necessary to save patient’s life or prevent serious damage to health – consent given

Legislation Cited:

Guardianship Act 1987 (NSW), ss 4, 33(1)-(2), 36(1)(b), 42, 44, 45(2)

Cases Cited:

None cited.

Texts Cited:

None cited.

Category:

Principal judgment

Parties:

005: Consent to Special Medical Treatment

QMN (the person)
OZS (applicant)
KAN (carer)

Representation:

A Donne as separate representative for QMN

File Number(s):

NCAT 2019/00363509

Publication restriction:

Decisions of the Guardianship Division of the Civil and Administrative Tribunal have been anonymised to remove any information that may identify any person involved in the Tribunal’s proceedings: Civil and Administrative Tribunal Act 2013 (NSW), s 65.

REASONS FOR DECISION

Background

1. QMN is a 20-year-old Aboriginal young woman who lives with her grandmother, KAN, in regional NSW. She is reported to have Rett syndrome and to be nonverbal.

2. On 20 February 2020 the Tribunal made a guardianship order appointing KAN for three years to make decisions for QMN about her accommodation, healthcare, medical and dental treatment and her services. On that date, KAN was also appointed as QMN’s financial manager.

3. The Tribunal received an application from OZS, who is the Director of Obstetrics and Gynaecology at a public hospital, seeking consent to special medical treatment for QMN. The treatment for which consent is sought is a hysterectomy. During the hearing OZS confirmed that the full description of the proposed procedure was laparoscopic hysterectomy.

4. On 27 June 2022 the Tribunal ordered that QMN be separately represented in respect of the application. Alex Donne participated in the hearing as the separate representative of QMN.

The hearing

5. The hearing was intended to be conducted by video link. However due to a technology failure it was conducted by telephone. QMN did not participate in the hearing. We were advised that she was available to the Tribunal, being just outside the room. However we accepted that QMN is non-verbal and that there was little value in having her brought into the room, where she would be unable to contribute to the hearing vocally, and risked becoming distressed.

6. The Tribunal must ensure that it conducts its hearings in such a way as to extend procedural fairness to the parties. This includes a requirement that the parties must be given a reasonable opportunity to be heard, and to present their case.

7. The Tribunal is also required to follow principles set out in s 4 of the Guardianship Act 1987 (NSW). These principles include that paramount importance should be given to the welfare and interests of a person with disabilities.

8. We were satisfied that it would be the interests of QMN to participate in the hearing if she were able. However she was unable to effectively participate and to provide a view and there was a real risk of distressing her. Mr Donne indicated that he had met with QMN and with KAN and was able to make submissions based on that meeting. Taking these matters into consideration we decided to proceed with the hearing in the absence of QMN.

9. At the commencement of the hearing, we joined KAN to the hearing as QMN’s carer and a person with a genuine concern for QMN’s welfare.

WHAT MUST BE PROVED?

10. If a person is incapable of giving informed consent to special medical treatment then only the Tribunal may provide consent: Guardianship Act, s 36(1)(b). Such treatment is defined in s 33(1) of the Guardianship Act as including:

“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.”

11. Under s 33(2) of the Guardianship Act, a person is incapable of giving consent to the carrying out of medical treatment if the person.

1. is incapable of understanding the general nature and effect of the proposed treatment, or

2. is incapable of indicating whether or not he or she consents or does not consent to the treatment being carried out.

12. The Guardianship Act requires that the Tribunal must not give consent to the carrying out of special treatment unless it is satisfied that the treatment is necessary to (a) save the patient’s life or (b) to prevent serious damage to the patient’s health: Guardianship Act, s 45(2).

13. The Guardianship Act imposes a further consideration on the Tribunal in s 44 of that Act. That section directs that if consent is to be given to medical or dental treatment, the Tribunal must be satisfied that it is “appropriate for the treatment to be carried out” and must have regard to the views of the patient, the person who is proposing that medical treatment be carried out on the patient and any persons responsible for the patient.

14. The Tribunal must also take into account matters set out in s 42 of the Guardianship Act which are:

1. the grounds on which it is alleged that the patient is a patient to whom this Part applies,

2. the particular condition of the patient that requires treatment,

3. the alternative courses of treatment that are available in relation to that condition,

4. the general nature and effect of each of those courses of treatment,

5. the nature and degree of the significant risks (if any) associated with each of those courses of treatment, and

6. the reasons for which it is proposed that any particular course of treatment should be carried out.

15. In summary, therefore, the issues for determination by the Tribunal were as follows:

1. Is the treatment proposed by the applicant “special medical treatment”?

2. Is QMN incapable of giving consent to the proposed special treatment?

3. Is the treatment necessary to save QMN’s life or is the treatment necessary to prevent serious damage to QMN ’s health?

4. Is the proposed special treatment the most appropriate form of treatment for promoting and maintaining QMN’s health and well-being?

Is the proposed treatment ‘special treatment’?

16. The Tribunal was satisfied that the proposed hysterectomy would render QMN permanently infertile and that it is special medical treatment as defined in the Guardianship Act.

Is QMN incapable of providing consent to the proposed treatment?

17. Section 33(2) of the Guardianship Act provides that a person is incapable of giving or withholding consent to medical or dental treatment if the person:

1. is incapable of understanding the general nature and effect of the proposed treatment, or

2. is incapable of indicating whether or not he or she consents or does not consent to the treatment being carried out.

18. The Reasons for Decision of the Tribunal upon making the guardianship order in 2020 indicate that it took into account medical information and was satisfied that due to Rett syndrome, QMN was totally incapable of managing her person and was prevented from making important life decisions.

19. In an application for medical treatment, OZS indicates that due to Rett Syndrome QMN has an intellectual disability and is not able to make decisions about her medical treatment. In a Health Professional Report Form for Special Treatment Applications, OZS also indicates that as a result of Rett syndrome, QMN has impaired communication ability.

20. We were provided with a number of reports compiled by a multi-disciplinary team at the Genetic Metabolic Disorders Clinic of a children’s hospital. The reports detail the course of QMN’s Rett Syndrome over the years since her childhood and confirm that she communicates primarily by sounds and gestures, but is able to use some single words meaningfully.

21. Taking into account the medical evidence we were satisfied that due to the symptoms of Rett syndrome, QMN is not able to understand the nature and effect of the proposed treatment and is not able to indicate her view regarding the proposed treatment.

What is the particular condition of the patient that requires treatment?

22. In the application OZS indicates that QMN has uncontrolled menstrual bleeding despite multiple medical treatments, and that her menstruation causes her great distress.

23. In a letter dated 28 September 2021, Dr Z, a consultant Neurologist, refers to QMN having challenging epilepsy with bouts of status epilepticus requiring hospitalisation sometimes for several weeks. He notes that the seizures are often precipitated by other conditions, such as urinary tract infections, and a most recent episode occurred after her PEG tube was changed without anaesthetic. She was traumatised and developed status epilepticus.

24. A report from the Genetic Metabolic Disorders Unit dated 16 May 2018, when QMN was aged 16, indicates that her seizures had increased in frequency and had been accompanied by oxygen desaturation. Her prolonged menstrual bleeding of six to seven weeks seemed to have adversely affected her seizure control. She is reported to experience pain with her heavy periods. She had a history of iron deficiency and was prescribed iron tablets.

What are the alternative options for treatment that are available?

25. In the application OZS indicates that a number of alternative treatments have been tried. These have included treatment with oral contraceptives, including on a continuous basis, Depot Provera, Implanon and a Mirena. The only other alternative is endometrial ablation that carries a significant risk of failure and would also result in permanent infertility.

26. In a letter to Dr Y, a Consultant Obstetrician and Gynaecologist, OZS refers to pain apparently experienced by QMN following the insertion of a Mirena. An ultrasound performed on 13 October 2021 indicated that the Mirena may have been low in the uterine cavity and was protruding into the cervix. Dr Y had previously treated QMN and her notes suggested that QMN had a small cervix. It was planned to remove the Mirena as it was causing pain and had not stopped QMN’s bleeding. OZS seeks the view of Dr Y regarding endometrial ablation, which he was reluctant to perform because of QMN’s small uterus. He also notes that the option of using oral contraceptive was limited because of the number of anti-epileptic medications prescribed for QMN. He also notes that long-acting reversible contraceptives had failed to reduce the bleeding and indicates that, with proper consents, he is willing to perform a laparoscopic hysterectomy that he believes to be in the best interests of QMN.

27. In a letter dated 6 June 2022, Dr Y supports OZS’ view that endometrial ablation is not an appropriate treatment for QMN and supports his proposal for a hysterectomy, whilst raising some concerns about QMN’s recovery and KAN’s expectations.

Why is it proposed that the treatment should be carried out?

28. OZS indicates that treatment is proposed to prevent the menstrual bleeding and the associated distress for QMN. He was of the view that the hysterectomy would provide relief for QMN from the pain and distress of heavy and prolonged menstrual bleeding. He also noted that QMN is prescribed iron supplements to overcome the effects of heavy and prolonged bleeding and said that as result QMN is likely to experience pain as the result of constipation causing pressure on her uterus. KAN also referred to the pain that QMN experiences as a result of constipation.

29. In a letter dated 27 July 2022, Dr X, a consultant physician, supported the proposed treatment on the basis that QMN has severe status epilepticus resulting in long periods of hospitalisation and that KAN advises that QMN’s epilepsy is worse when she is experiencing menorrhagia.

30. In addition to KAN’s account of QMN’s heavy and prolonged menstrual bleeding, sometimes for as long as 21 days, we were provided with data from charts held at QMN’s respite placement. The data support the anecdotal reports that QMN is subjected to heavy and prolonged menstrual bleeding.

31. KAN described the effects of the abnormal menstrual bleeding as causing great pain to QMN, resulting in her screaming and pulling up her legs in pain, lack of sleep and mood changes. Whilst she is encouraged to walk, when in pain from bleeding she falls to her knees, and her demeanour indicates that she is in pain. KAN is also of the view that the stress from the effects of the bleeding precipitate QMN’s increased presentations with status epilepticus.

Are there any risks associated with the proposed treatment?

32. In the application OZS lists the risks as including scarring, bleeding, infection, blood transfusion, injury to the bladder, bowel or ureter, change to the bowel and bladder function, DVT, stroke, myocardial infarct and worsened seizure activity in the recovery period.

33. During the hearing OZS confirmed that it was not his intention to remove QMN’s ovaries because of the adverse effect that would have on QMN’s bone density.

34. OZS confirmed that in gynaecological terms, the proposed procedure for QMN carries no more risk than for any other patient. Her added risk was in relation to the possibility of seizures. In respect of seizure risk, QMN would be under close observation from the anaesthetist during the procedure and post-operatively would be treated by the pain team.

35. OZS also indicated that the proposed laparoscopic hysterectomy technique resulted in the less pain and faster recovery and carried less risk than an abdominal hysterectomy.

36. KAN said that QMN has previously undergone surgical procedures including a nine and half hour operation when she was 15 years old. She was satisfied that the risks of the procedure were not too great.

37. We are satisfied that the risks of the procedure are not greater than is reasonable having regard to the effects on QMN and on her life and lifestyle of the heavy and frequent menstrual bleeding.

Is the proposed treatment the most appropriate treatment?

38. Taking into account the evidence of previous failed attempts to intervene in QMN’s menstrual cycle by methods less invasive than the proposed hysterectomy, and as endometrial ablation is not an appropriate alternative, we are satisfied that the proposed hysterectomy, preferably by laparoscopic means is the most appropriate treatment.

How will the proposed treatment promote and maintain the patient’s health and wellbeing?

39. OZS was of the view that it is likely that the hysterectomy would provide relief for QMN from the pain of prolonged menstrual bleeding and the seizures that, according to KAN result from that bleeding.

40. KAN also spoke about the effect of the constant bleeding on QMN’s lifestyle, including that she often is awake and screaming with pain and is lacking in sleep and as result of pain and heavy bleeding and lack of sleep, sometimes misses outings and other activities. She also indicated that the iron medication prescribed to overcome the effects of prolonged bleeding cause constipation for QMN with resultant pain. By stopping menstrual bleeding, the treatment is likely to ameliorate these conditions.

41. In respect of the effect of infertility on QMN, Mr Donne submitted that due to her condition, pregnancy and childbirth would not be a positive experience for QMN. We accept that this is the case due to the multiple physical limitations resulting from the Rett syndrome.

Is the proposed treatment necessary to save the patient’s life or prevent serious damage to health?

42. The treatment is not necessary to save QMN’s life.

43. Mr Donne submitted that the Tribunal should consider the effects of prolonged and heavy menstrual bleeding on QMN’s emotional and psychological health. He was of the view that taking into account those effects, and that QMN has had a number of unsuccessful treatment attempts, the treatment is necessary to prevent serious damage to QMN ’s health.

44. We are satisfied that the prolonged and heavy bleeding constitutes serious damage to QMN’s physical, psychological and emotional health.

45. In the absence of suitable alternative treatments, we are satisfied that the proposed hysterectomy is necessary to prevent serious damage to QMN’s health.

46. Whilst OZS proposes to perform a laparoscopic hysterectomy we note that having commenced the surgery it could eventuate that the laparoscopic procedure is not appropriate, and an abdominal hysterectomy might be required. To allow for that possibility and to avoid surgical complications or repeated surgery, we were of the view that, if necessary, an abdominal hysterectomy would be appropriate and would provide the benefits noted above.

Conclusion

47. Taking into account all of the matters set out above we consented to the proposed total laparoscopic hysterectomy and if necessary abdominal hysterectomy under general anaesthetic and any necessary treatment that would normally be provided in association with or directly consequent upon the above treatment.

48. Taking into account pressure on hospitals resulting from the COVID-19 pandemic, the consent is effective for a period of 12 months from the date of this order.

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I hereby certify that this is a true and accurate record of the reasons for decision of the Civil and Administrative Tribunal of New South Wales.

Registrar

Decision last updated: 05 October 2023