CXG [2018] NSWCATGD 44

Is CXG someone for whom the Tribunal could make an order because she has a disability which prevents her from being able to make important life decisions?

Section 14 of the Act provides that the Tribunal may make a guardianship order for a person if it is satisfied that she is "a person in need of a guardian". A person in need of a guardian is "a person who because of a disability is totally or partially incapable of managing his or her person: s 3(1) of the Act. A person with a disability is a person who is: 1. intellectually, physically, psychologically or sensorily disabled; 2. of advanced age; 3. a mentally ill person within the meaning of the Mental Health Act 2007 (NSW); or 4. otherwise disabled; and by virtue of that fact is restricted in one or more major life activities to such an extent that he or she requires supervision or social habilitation: s 3(2) of the Act.
In the guardianship application, UAC describes CXG has having severe dementia and being unable to understand conversations other than those about visible, tangible things.
We were provided with reports of health and medical practitioners regarding CXG's condition. They include those canvassed below: 1. An Aged Care Assessment Team (ACAT) assessment dated 17 October 2018 indicates that: 1. a referral was made by TYU who indicated that CXG's "physical and cognitive function" has declined since a fall in September 2018; 2. TYU indicated that CXG has been diagnosed with dementia and that she became "easily agitated" when confronted or overwhelmed with noise and stimulation including when watching television. She was also resistive and at times became physically and verbally aggressive when confronted or repeatedly asked to complete a task. She also seemed to be "holding" her urine; 3. CXG had been sliding off the bed when sitting on its edge and would call out at night for stand by and guiding assistance for transfers; 4. there were issues with CXG's medication compliance and at times TYU was hiding her medication in food; 5. TYU reported that CXG exhibited low mood; 6. a Discharge from another public hospital dated April 2018 indicates that CXG scored 20/30 on a Mini Mental State Examination (MMSE) in 2009 and 12/30 on the MMSE in 2015. The ACAT assessor did not attempt a cognitive assessment because CXG became agitated with the assessor's presence. 7. in an email to the Tribunal dated 23 November 2018, TYU states that there were errors in the ACAT report. She does not identify errors in any of the matters set out in the preceding sub-paragraphs and in a Consult Note dated 20 November 2018, Dr Z, a Senior Medical Officer comments that when examined, CXG 'babbled'. She correctly stated her first name but did not know her last name or date of birth and was disoriented to time and place. 1. In a letter dated 22 November 2018, Dr Y, a Visiting Medical Officer Psychiatrist, Consultant Liaison Psychiatrist and Old Age Psychiatrist comments to the following effect having been requested to provide a second opinion regarding CXG's diagnosis and treatment: 1. She had been provided with the following background information: 1. CXG had end-stage dementia probably of multifactorial cause. 2. CXG's behavioural and psychological symptoms of dementia might have been contributed to by urinary retention, urinary tract infection and pneumonia, all of which had resolved by the time of the consultation. 3. CXG's mobility declined markedly after a fall on 11 September 2018 after which she was admitted to hospital with an exacerbation of the behavioural and psychological symptoms of dementia. 4. There had been a clear diagnosis of dementia by Dr X in 2009 with a steady decline in cognition and function in keeping with the neurodegenerative process of dementia until the current time. 1. On review, CXG was unable to hold a conversation and lacked cognitive capacity. 2. CXG's presentation included the following issues secondary to her dementia: 1. She is not able to walk - her brain is not able to tell her how to walk, and when she does walk she is at extremely high risk of falls. 2. She has receptive and expressive aphasia and is unable to tell staff what she is experiencing. 3. She cannot recognise objects, and for example she confuses a hand with a glass of water. 4. She is not able to dress, feed or toilet herself. 5. She has evidenced perceptual disturbances including talking to the television and responding to objects in the room that no-one else can see. 6. During her hospitalisation she has often been extremely distressed, seemingly in response to internal stimuli which are possibly auditory or visual hallucinations. 7. She has exhibited an unpredictable fear response to staff including suddenly lashing out at staff with fear and aggression. This could be paranoia, perceptual disturbance, disinhibition of the emotional regulation centres of the brain or all of these. 8. CXG has been screaming in distress. The screaming is due to the dementia causing hallucinations, paranoia and mood disturbance as well as chronic confusion and disorientation and physical pain caused by her severe arthritis.
It was agreed by the parties attending the hearing that CXG is not able to make lifestyle decisions.
Taking into account the evidence of the health and medical practitioners, we are satisfied that CXG has dementia that results in cognitive impairment such that she is not able to manage her person, including making lifestyle decisions, and requires the assistance of others and some supervision in her day to day life. We are therefore satisfied that she is a person for who we could make a guardianship order.

Should the Tribunal make a guardianship order and what order should be made?

The Tribunal must consider all of the following matters set out in s 14(2) of the Act before exercising its discretion to make a guardianship order: 1. the views (if any) of: 1. the person, and 2. the person's spouse, and 3. the person's carer and 1. the importance of preserving the person's existing family relationships, and 2. the importance of preserving the person's particular cultural and linguistic environments, and 3. the practicability of services being provided to the person without the need for the making of such an order.
These matters have no hierarchy or weighting and each is a mandatory consideration. However, the Tribunal must undertake a balancing exercise for its consideration of the matters in s 14(2) of the Act. When undertaking this task the Tribunal may be guided by the principles that are set out in s 4 of the Act (see IF v IG [2004] NSWADTAP 3).
In her application, UAC indicates that she is seeking the appointment of a guardian because TYU, as CXG's enduring guardian, is refusing to consent to medical treatment that is necessary to relieve CXG's distress and suffering, and also to make decisions about CXG's accommodation because TYU has proposed that CXG return home it is not believed that she is able to provide the level of care at home that CXG requires. UAC notes that pending the hearing, CXG was being treated in accordance with provisions permitting emergency treatment without consent to relieve suffering.
In the consult note dated 20 November 2018, Dr Z comments that: 1. appropriate duty of care strategies could not be performed due to limitations of treatment options; 2. in respect of non-pharmacological strategies, family members could help to calm CXG; 3. Cholinesterase inhibitors could be tried but there may not be significant cognitive improvement. An EEG would be helpful but would be limited to being a 'point study'; 4. Diazepam would be the better drug in acute anxiety but is not the best drug for behavioural settlement; 5. Sodium Valproate as a mood stabiliser might be helpful; 6. Mirtazapine was trialled in 2009 with apparently good effect and could be tried again.
Hospital progress notes dated 22 November 2018 indicate that CXG was exhibiting worsening agitation since the weekend and had settled with the use of Risperidone.
In her report dated 22 November 2018, Dr Y comments that the usual treatment regimen that she would recommend for a person in CXG's situation was: 1. Exclude and treat all preventable/reversible causes of distress such as UTI and urinary retention. This had been done by the treating team. 2. Use environmental modification including a low stimulus environment, soothing music and a bed at floor level. This had already been done by the treating team. 3. Request family to bring in familiar objects and photographs to assist her to orientate - that request had been relayed to TYU by the treating team. 4. When severe distress persists after carrying out the strategies above, medications are usually trialled to make the patient feel more comfortable. 5. To not use psychotropic medications in this situation "is to fail to provide reasonable care and relief of severe suffering in someone with an end-stage neurological condition". 6. CXG has been clearly observed to be experiencing perceptual disturbances and to be aggressive without reason, demonstrating a paranoid fear response, and to be disturbed in mood. Antipsychotic medication can target those symptoms. 7. Risperidone quicklet in low doses is an excellent choice because it also has a good effect on anxiety, could be dissolved in water and is approved for use for the Behavioural and Psychological Symptoms of Dementia. Staff had reported that CXG had settled and was less distressed after a dose of Risperidone. 8. TYU had agreed to trialling Diazepam (1mg-2mg) but it had made no clinical difference to CXG's observed levels of distress. Given its lack of efficacy, it should be ceased and an alternative medication trialled. 9. TYU had agreed to a trial of small doses of Ordine to target possible underlying pain and the symptoms of distress but the treating team reported minimal clinical response. This could be because the dose agreed to by TYU was too low and she did not agree to increased dosage. In respect of this situation, medication needs to be titrated to clinically effective doses guided by the treating physician. When a guardian does not allow this, it cannot be said that the medication has been given an effective trial. 10. She believes that TYU believes that psychotropic drugs would not alleviate CXG's distress and would make her worse and had remained of that view despite attempts by UAC to provide support and education around the use of medication. 11. In her opinion there does not appear to be any logical basis to deprive CXG of further trials of psychotropic medication with a goal of alleviating her distress under the guidance and monitoring of a specialist geriatric team in a hospital setting. 12. Any psychotropic medication that is trialled needs to be monitored for its effectiveness and for the emergence of side effects. Where the side effects outweigh the benefits or where there are no discernible benefits, the medication should be ceased. Not uncommonly, several different medications might need to be trialled before finding the right combination. 13. To withhold this treatment is not humane where symptomatic relief is possible. 14. CXG has a terminal illness and the issue of palliative care needs to be discussed. That matter had apparently been raised in discussions with TYU about treatment of CXG's pneumonia using antibiotics. 15. Sometimes treatment may relieve distress but also hasten death by providing pain relief until distress levels are settled but depressing respiratory drive as a side effect. It is usually considered humane to prioritise patient comfort where patients have end-stage dementia. 16. Sometimes family members can manifest their grief through needing to maintain control of their family member's medical treatment. Sometimes family members can find the idea that something, such as psychotropic medication, that might hasten death to be confronting and anxiety-provoking even if their loved one's quality of life is poor. This can bring up feelings of conflict and guilt and avoidance of making such decisions. In these circumstances, sometimes the grief issues can interfere with the family's ability to make a decision in the best interests of the family member. 17. In CXG's case, she has an extremely poor quality of life, has a terminal illness and is not likely to live very long. Comfort and management of psychological and physical distress with non-medication techniques AND (emphasis retained) medication would be a priority. 18. A broader range of psychotropic medications in appropriate dosages should be trialled to relieve psychological distress.
During the hearing, UAC gave evidence to the following effect: 1. A number of medications have been trialled but mostly without the consent of TYU and in accordance with the need to treat CXG to relieve her significant pain and distress. 2. At times TYU has consented to proposed medication but has then changed her mind. As a result the efficacy of the medication for treating CXG's condition has not been able to be assessed. 3. CXG has continued to scream and otherwise act distressed. 4. In her view, treating CXG's hallucinations and resulting distress using anti-psychotic medication is consistent with the direction in the enduring guardianship appointment to the effect that consideration should be given to maintaining her life at a comfortable level.
TYU provided the Tribunal with product information in support of her views that Risperidone, Quetiapine and morphine, should not be administered to a person in CXG's circumstances.
TYU provided written and oral information regarding her views about her mother's treatment which were to the following effect: 1. Prior to her hospitalisation, CXG was ambulatory and able to perform a number of the activities of daily living by herself or with assistance. Since then her condition has deteriorated to that described by the medical personnel. In her opinion the medical treatment delivered at the public hospital, including the use of antipsychotic medication, has rendered her non-ambulatory. 2. On 21 October 2018, she had requested that CXG be given Buspar, a non-benzodiazepine anti-anxiety drug that does not have side effects for patients with dementia. 3. She wanted a routine reintroduced whereby CXG would be toileted and assisted to mobilise to regain the mobility she had lost. 4. CXG has been provided with medications that in the USA carry a warning that they should not be used with dementia patients and she has been given high doses of morphine with antipsychotics that, since 19 November 2018, have: "caused her to become gravely ill so that she is no longer speaking, eating and only drinking small sips of juice each day. She is slowly being medically euthanized against her will and against her wishes" 1. She does not agree to the use of morphine because CXG has never before needed it to address her pain and has never before complained of extreme pain. In her view, CXG is not in extreme pain. She is also opposed to its use because it is used as an end of life "hospice" treatment. CXG did not enter the hospital as a dying patient. In her view the dosage of morphine is too high and CXG is being administered "knock you out and help you die" doses. 2. In her view CXG's deterioration is directly attributable to the medication she has been administered in hospital. 3. As a Christian, CXG is "opposed to assisted suicide, couched in terms of 'comfort drugs'". 4. In her view there were errors in UAC's documents, including that CXG did not have a urinary tract infection on admission, and that contrary to the claims of UAC there was little consultation with her about recommended medication for CXG. 5. In her view the proposed use of Risperidone was for behavioural control related to CXG's expression of distress and that the medication has been found to hasten death. She believes that the distress resulted from CXG's anxiety condition that she exhibited prior to her hospitalisation. She fears that Risperidone and morphine used on a PRN basis would be used as a "toolbox" to manage CXG's behaviour including when she screams. 6. The effect of the medication administered in hospital is to render CXG semi-comatose and therefore less actively distressed. 7. She has spoken with a palliative care doctor who has said that he would not prescribe anti-psychotics under these circumstances. 8. She had also spoken with a Dr W who expressed the view that CXG was over-medicated. 9. She would consent to some medication, specifically Ketorolac for pain and Clonazepam as an anti-anxiety medication.
When asked by the Tribunal whether she was saying that she would reject the use of medication that would hasten CXG's death, even if it reduced her level of distress, TYU replied "yes, primarily".
When asked by Ms Thomas, of the Office of the Public Guardian, if she would agree to the use of medication to reduce pain and improve comfort if CXG had only days or weeks to live, TYU replied to the effect that she did not believe that morphine would have that effect. She said that the morphine made CXG drowsy and, when given morphine, CXG was scratching herself and was thirsty. She said that whilst she believed the morphine could make CXG drowsy she did not believe that it made her more comfortable. She was also of the view that Risperidone would not make CXG more comfortable.
In response to the comments by TYU, UAC commented to the following effect: 1. Dr W is a medical registrar and not a senior doctor. He had not indicated to her that he thought CXG was over-medicated. 2. Dr V, the palliative care physician with whom she has consulted, was not one of CXG's treating doctors so lacked an in depth knowledge of her specific circumstances. 3. Buspirone, the medication that TYU wished to be prescribed for CXG, is not recommended in Australia for use by dementia patients with anxiety and agitation. 4. The proposed medication regimen for CXG included reduced levels of Risperidone as CXG's agitation reduced.
UAC also said, in effect, that: 1. When she made the application she was of the view that there was a need for an accommodation decision to be made for CXG because TYU wished to take her home and in her view that was not advisable. The hospital social worker has made some enquiries about nursing home accommodation for CXG. However in her view CXG had only days or weeks to live and it would be unfair to try to move her to an aged care facility. She should either remain at the public hospital or move closer to TYU at another public hospital. 2. In her opinion there needs to be a palliative care plan devised for CXG to include matters such as the use or otherwise of antibiotics should she develop pneumonia.
CXG's granddaughter, Ms U, did not attend the hearing but provided her views which were that: 1. CXG did not want significant medical interventions and would be opposed to the current treatment. 2. She was concerned about the use of anti-psychotic medication when CXG has no history of psychosis. 3. The recommendations of Dr V are more in keeping with her views and those of TYU.
Ms Thomas said that in the view of the Public Guardian, there is a need to develop a palliative care plan and to make decisions about CXG's medical treatment. The evidence suggests that there is no likelihood of reaching consensus between the enduring guardian and the treating team and therefore there is a need to appoint a guardian to make decisions about CXG's health care and medical treatment
We carefully considered whether there needs to be a guardianship order despite the existence of the enduring guardianship appointment. We accept that TYU holds views that are different from those of the treating doctors. In respect of those differences: 1. We accept that when CXG entered hospital she was more able than she was at the time of the hearing and that her condition has deteriorated significantly. 2. In respect of current presentation we placed weight on the views of the medical practitioners to the effect that CXG was not able to mobilise, was experiencing perceptual hallucinations and was responding with distress to the hallucinations or to pain. 3. We placed weight on the views of UAC and Dr Y, as specialist practitioners, and accept their view that CXG has advanced dementia which is a deteriorating condition. 4. Whilst TYU expressed the view that CXG's deterioration had been cause by the treatment she received in the hospital, it is our view that earlier manifestations of CXG's presentation might be seen in the ACAT report in its reference to her deteriorating cognitive and physical condition, mobility issues, agitation and aggression. We are also of the view that it is reasonable to assume that CXG's condition worsened after the fall she experienced in September. 5. In our view, it is not unreasonable to consider that CXG's condition is the result of the progression of dementia as opposed to a direct effect of the medication administered in hospital. We are also of the view that it would be reasonable for a guardian to fully explore that possibility when considering consent to medical treatment.
We find that TYU's insistence that CXG's condition is a direct result of the hospital treatment fails to reasonably consider alternative explanations that are relevant to making decisions about her treatment that are in her best interests.
Our view of the written and oral evidence of medical practitioners is that the proposal to administer Risperidone and morphine to CXG has been based on a genuine desire to reduce her distress and experience of pain. We are not satisfied on the evidence that the aim is behavioural control or that hospital staff would use the medication as a "tool box" when CXG was screaming. We are of the view that in concluding that the medication was primarily aimed at behavioural control, TYU has not considered other explanations that it would be reasonable for a guardian to consider in the best interests of CXG.
Whilst Ms U objects to the use of anti-psychotic medication on the basis that CXG has no history of psychosis, and TYU asserts that her symptoms are related to anxiety, it is our view that it is reasonable to entertain a view that as a result of her dementia, CXG is experiencing hallucinations as evidenced by her appearing to respond to stimuli of which others are unaware. Under those circumstances, it is our view that it is reasonable to give close consideration to the value of using anti-psychotic medication to address those symptoms. We are not satisfied that TYU has given close consideration to the potential value of anti-psychotic medication whilst she has focussed on the possible disadvantages of the use of such medications.
Dr Y described CXG as someone with an end-stage neurological condition and UAC was of the view that CXG had severe dementia and was expected to live for only days or weeks. We are of the view that these practitioners are specialist medical practitioners with relevant expertise and their opinions regarding CXG's condition and prognosis should be accorded weight in considering appropriate medical treatment for her. Taking into account their opinions, it was our view that it was in CXG's best interests to closely consider whether she should be treated to provide comfort and reduce distress, even if this resulted in a shorter remaining period of life. We are of the view that TYU's responses to the questions about this matter as canvassed in [26] and [27] above, indicate that TYU has not objectively evaluated the advantages of reducing CXG's suffering in the latter period of her life.
In reaching the conclusions set out above, we do not doubt or underestimate the love and concern that TYU has for CXG or her commitment to doing what she believes is best for CXG. However, we are of the view that where the decisions now required call for objective evaluation of the facts and options, TYU has been unable to conduct that evaluation.
It is not up to the Tribunal to form a view as to what treatment should be provided to CXG and we accept that there are serious and documented dangers associated with the medications proposed for CXG and that these must be taken into account. However, as we are of the view that TYU has not been able to objectively assess CXG's current circumstances and the proposals advanced for her treatment, we are of the view that there is a need to appoint a guardian who is able to conduct that objective assessment taking into account the view of TYU as well as CXG's treating team.
We accept that CXG expressed the wish that TYU make decisions for her about her health care and medical and dental treatment. Section 4 of the Act requires that we take into account CXG's views. However, that section also requires that we place paramount importance on CXG's welfare and best interests. It is our view that CXG's welfare and best interests require the appointment of a guardian to exercise objective consideration of her circumstances and proposed treatment.
We have considered the effect of an order on CXG's family relationships and cultural environment. Whilst appointing a guardian other than TYU would suspend her appointment as the enduring guardian, we are satisfied that her close, loving and caring relationship with her mother will continue.
TYU has indicated that CXG is a citizen of the United States and notes that some of the medication proposed for CXG is not recommended for use by the US Food and Drug Administration. We are of the view that despite CXG's US citizenship, it is not culturally inappropriate to make the order for the following reasons: 1. TYU advised that CXG has been living with her in Australia since 2009. 2. The enduring guardianship appointment made by CXG was made under NSW legislation and TYU has been seeking to act in accordance with that appointment.
Taking all of these matters into consideration we decided to make a guardianship order appointing a guardian to make decisions for CXG about her health care and her medical and dental treatment.

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Judgment (9 paragraphs)

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