NXU

[2023] NSWCATGD 24

NSW Civil and Administrative Tribunal

New South Wales

Medium Neutral Citation:

NXU [2023] NSWCATGD 24

Hearing dates:

9 November 2023

Date of orders:

9 November 2023

Decision date:

09 November 2023

Jurisdiction:

Guardianship Division

Before:

J Moir, Senior Member (Legal)
Dr B McPhee, Senior Member (Professional)
L Stewart, General Member (Community)

Decision:

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

Hysterectomy – removal of uterus and cervix and bilateral fallopian tubes through a mid-line incision on the abdomen, under a 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 months from the date of this order.

Catchwords:

CONSENT TO MEDICAL TREATMENT – application for consent to special medical treatment – hysterectomy – proposed treatment is special medical treatment – whether treatment is necessary to save patient’s life or prevent serious damage to health – patient has complex medical conditions – risk to life if treatment not provided – patient not able to provide informed consent due to intellectual disability – no alternative treatments without significant side effects – proposed treatment is necessary to prevent serious damage to patient’s health – treatment complies with National Health and Medical Research Council guidelines – consent given – effective for 12 months from date of order

Legislation Cited:

Guardianship Act 1987 (NSW), ss 32, 33, 42(2); Pt 5

Cases Cited:

None cited.

Texts Cited:

None cited.

Category:

Principal judgment

Parties:

002: Consent to Special Medical Treatment

NXU (the person)
EUM (applicant)
NZU (carer)

Representation:

Solicitors: M Dudhee, Separate Representative for NXU

File Number(s):

NCAT 2023/00330458

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

APPLICATION FOR CONSENT TO MEDICAL TREATMENT

Background

1. NXU is a 44-year-old woman who lives in West Sydney with her mother, NZU. NXU has been diagnosed with intellectual disability and epilepsy. She is a participant in the National Disability Insurance Scheme (NDIS).

2. The Tribunal has received an application for consent to special medical treatment for NXU, from EUM, Gynaecologist and Obstetrician from a public hospital. The proposed treatment is hysterectomy with bilateral salpingectomy.

3. The Tribunal has appointed a separate representative for NXU.

4. These reasons for decision arise from the hearing of this application.

The hearing

5. The hearing was held in Sydney with participation in person, video and by telephone. The participants were NXU, NZU, EUM, Dr Z and Ms Marla Dudhee, Separate Representative. The Tribunal was assisted by a Cantonese-speaking interpreter.

What did the Tribunal have to decide?

6. When considering an application for consent to special medical treatment, the Tribunal must have regard to the views of NXU, and EUM and NZU, and the objects of Pt 5 of the Guardianship Act 1987 (NSW). The Tribunal must be satisfied that the proposed treatment is necessary to save the patient's life or prevent serious damage to health; and that it complies with any relevant National Health and Medical Research Council guidelines.

7. The Tribunal must have regard to the following matters, as outlined in s 42(2) of the Guardianship Act:

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.

Consent to special medical treatment

The particular condition of the patient that requires treatment, the proposed treatment and the reasons for which it is proposed that any particular course of treatment should be carried out.

8. The proposed treatment was hysterectomy (removal of the uterus and cervix, and bilateral fallopian tubes, through a midline incision), under a general anaesthetic.

9. The Tribunal considered written evidence from EUM as well as her evidence and the evidence from Dr Z at the hearing.

10. The Tribunal was advised that NXU has complex medical conditions, and was recently discharged from hospital having been treated for pancreatitis and cholecystitis, which required intravenous antibiotics. She will need a cholecystectomy to reduce the risk of a recurrence of pancreatitis, with serious risks to her health. However this surgery is not currently possible because NXU also has a very large, multi-fibroid uterus. This has been causing heavy menstrual bleeding for some time which has caused anaemia, and difficulties with self-care. The fibroids are so large, they could lead to catastrophic bleeding. Should this occur, she would require a lifesaving hysterectomy, which holds significant risks of mortality. Given the size of her fibroids and thickened endometrium, there is also a risk of malignancy which requires investigation and possible treatment.

11. The stated risks of the proposed treatment are the usual risks associated with surgery – infection, bleeding, damage to surrounding organs such as bowel and bladder, risk of deep venous thrombosis or pulmonary embolism and the risks associated with a general anaesthetic. Post surgery, NXU will require pain relief and some assistance with wound management. She would likely be able to return home quickly and thereby have minimal risk from a lengthy hospital admission.

Is the proposed treatment 'special treatment'?

12. The first matter which the Tribunal must determine in applications of this kind is whether the proposed treatment is special medical treatment. Special medical treatment is relevantly defined in s 33 of the Guardianship Act as follows:

1. 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.

13. The Tribunal notes that a hysterectomy will render NXU permanently infertile. If NXU were currently infertile then the proposed treatment would not be special medical treatment because it would not cause her to be infertile.

14. There was some discussion at the hearing about whether NXU may already be infertile due to her age and the impact of her large fibroids. The doctors advised that NXU's likelihood of conceiving a pregnancy naturally would be very low, and that conception would likely require IVF. In addition to this, a pregnancy would be very high risk, and complicated because of the fibroids, requiring very extensive obstetric care. However they could not state categorically that NXU is currently infertile.

15. The Tribunal notes that in the normal course of events a woman who requires IVF in order to conceive, because of issues to do with her own physiology is classified as infertile. It is unclear whether the definition of “permanently infertile” in the Guardianship Act contemplates the possibility of a person conceiving using reproductive technology, as opposed to their ability to conceive without such intervention. This Tribunal's view is that the definition likely does not include the possibility of reproductive technology being required to achieve a successful conception. However for the purpose of this application, the Tribunal is satisfied that there remains a question about whether NXU is already infertile, such that it is appropriate to consider that the proposed treatment will cause her to be permanently infertile.

16. The Tribunal is therefore satisfied that the proposed treatment falls within the definition of special medical treatment as it will have the effect of rendering NXU permanently infertile.

Is NXU able to consent to the proposed treatment?

17. The Tribunal was advised that NXU has an intellectual disability and does not understand the general nature and effect of the treatment. The doctors advised that she is primarily non-verbal and is not able to communicate her views. A health professional report from her GP, Dr Y, advises that NXU has a severe intellectual disability and autism. Dr Y states that NXU's disability is such that she does not seem to understand her medical needs and is not able to participate in any discussion about them. She is unable to describe how unwell she is, even when asked direct questions. She is unable to make informed decisions about her medical care.

18. Ms Dudhee told the Tribunal that she had spoken to NXU about the proposed treatment and confirmed that NXU is able to communicate verbally. She was able to provide some basic information about herself and was aware that the doctors wanted her to have an operation. However Ms Dudhee agreed that NXU was not able to understand the proposed treatment in such a way that she could properly be considered to be able to provide consent.

19. NXU did not play an active role in the hearing, nor did she offer her views. There was no dispute that NXU is not able to provide consent herself to the proposed treatment.

20. From the available evidence, the Tribunal was satisfied that NXU is not capable of understanding the general nature and effect of the proposed treatment, and is therefore not capable of providing consent on her own behalf.

The alternative courses of treatment that are available in relation to that condition, the general nature and effect of each of those courses of treatment and the nature and degree of the significant risks (if any) associated with each of those courses of treatment.

21. The Tribunal was told that there are a number of treatment options for very large fibroids, and heavy bleeding. The oral contraceptive pill can be useful in addressing issues of heavy bleeding, but this is not recommended for NXU because of the increased risks of taking this medication over the age of 40. In addition to this, it would not address the other issues, such as the need for a cholecystectomy, nor would it assist in determining if NXU has any malignancy. Various other oral treatments (progesterone or Danazol) similarly don't address all of the issues, and potentially have unpleasant side effects. A progesterone implant (Mirena) is generally ineffective for such an enlarged uterus. Another surgical option, endometrial ablation is also generally ineffective for such an enlarged uterus. The proposed hysterectomy was regarded as the best approach in addressing the issue of excessive bleeding.

22. In terms of addressing the large fibroids, there was also the option of embolization, which involved blocking the blood supply to the fibroids. However this has a lower chance of success than a hysterectomy, carries significant risks of necrosis, which would likely then require a hysterectomy and does not address the possibility of malignancy.

23. On balance the medical opinion is that there are no alternative treatments which could address all of the necessary issues and that the potential side effects from some of these treatments are significantly worse than the side effects from the proposed treatment. In addition to this, the proposed treatment will decrease NXU's need for iron supplementation, address the risk of haemorrhage, requiring urgent lifesaving hysterectomy and blood products, removes the risk of malignancy and decreases the risk of pelvic organ prolapse and urinary tract infections.

24. Ms Dudhee submitted that the treatment is the most appropriate treatment in the circumstances. NZU also supported the treatment proceeding, asking how soon it could proceed.

25. The Tribunal was satisfied from this evidence that the proposed treatment is the most appropriate treatment.

Is the proposed treatment necessary to save the patient's life or prevent serious damage to health.

26. The medical opinion is that this treatment will prevent serious damage to NXU's health by preventing risk of massive haemorrhage and possible malignancy, and on the same basis, is potentially necessary to save her life.

27. The Tribunal noted that the proposed treatment would address a number of potentially serious risks which, whilst not being highly likely, are potentially life-threatening should they occur. This includes both the risks of haemorrhage, and possible of malignancy, in relation to NXU's fibroids, as well as the risk of a recurrence of pancreatitis, which could be addressed by surgery which cannot currently occur because of NXU's large uterus.

28. The Tribunal notes that the objects of Pt 5 of the Guardianship Act contained in s 32 of that Act are as follows:

32 Objects

The objects of this Part are –

(a)   to ensure that people are not deprived of necessary medical or dental treatment merely because they lack the capacity to consent to the carrying out of such treatment; and

(b)   to ensure that any medical or dental treatment that is carried out on such people is carried out for the purpose of promoting and maintaining the health and well-being.

29. The Tribunal noted the object that NXU should not be deprived of necessary treatment merely because she lacks the capacity to consent for herself. The Tribunal noted the evidence that the proposed treatment would be the usual treatment for a person with NXU's condition. The Tribunal was satisfied that she should not be deprived of the opportunity to have this treatment simply because, in her circumstances, it is considered to be special medical treatment requiring the Tribunal's consent.

30. The intention of the proposed treatment is to address NXU's current difficulties arising from her fibroids and enlarged uterus and is therefore for the purpose of promoting and maintaining her health and well-being. The Tribunal is satisfied that this will also have the benefit of addressing the potentially serious risks associated with this condition, and provide the opportunity to treat another serious condition (pancreatitis), which carries a significant risk of mortality.

31. It is not consistent with NXU's interests and welfare, nor her health and well-being to wait for her situation to become more critical, at which point the surgery would most definitely be lifesaving, but would significantly increase the risk to her of a poor outcome.

32. Ms Dudhee's submission was that the proposed treatment was necessary to prevent serious damage to NXU's health.

33. The Tribunal is satisfied from the available evidence that the proposed treatment is necessary to prevent serious damage to NXU's health.

Does the treatment comply with any relevant National Health and Medical Research Council guidelines.

34. The proposed treatment is a standard treatment for a person with NXU's condition. There was no indication before the Tribunal that there was any concern about the proposed treatment complying with any relevant National Health and Medical Research Council guidelines.

Does the Tribunal consent

35. The Tribunal was satisfied that the proposed treatment is “special medical treatment” because it will render NXU permanently infertile, and that NXU is not capable of providing consent on her own behalf to the treatment. On this basis, the Tribunal was required to consider whether or not to consent to the treatment.

36. The Tribunal had regard to NXU's condition, the alternative options for treatment, the risks and benefits of the proposed treatment, and was satisfied that there are no alternatives which may provide equivalent outcomes for NXU. The Tribunal was satisfied on the basis of the evidence, that the treatment is necessary to prevent serious damage to NXU's health, and on this basis gave consent to the proposed treatment.

Period of consent

37. Dr Z advised the Tribunal that NXU will be placed on the waiting list for this surgery which is currently around three to six months. However surgery may not be able to proceed within this time if her gallbladder flares up again. Whilst this is currently settled, it is likely to reoccur, and she will likely need hospitalisation and treatment again. It would not be in NXU's interests to perform this surgery whilst her gallbladder is “hot”. In the meantime, NXU's heavy blood loss and associated anaemia will be managed, and she may need iron or blood infusions.

38. The Tribunal decided to provide consent for a period of twelve months, to take account of the various considerations in proceeding with this surgery.

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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: 17 September 2024