Carers’ views on advance statements and nominated persons

This Talking Point is about carers’ views on advance statements and nominated persons, which are supported decision making mechanisms established by Victoria’s Mental Health Act 2014. They have a significant bearing on what carers can do to support the person being cared for to make or participate in decisions about their treatment. For an overview of the Act’s supported decision making mechanisms and guiding principles, see Carers and supported decision making mechanisms.

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Advance statements
Advantages and disadvantages of advance statements
Nominated person
Trust


For Rowan, a nominated person should be someone who is ‘in sync’ with the thinking of the person he or she represents. Of the two mechanisms, Rowan thought the advance statement had ‘far more power’ than the nominated person.

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Advance statements

An advance statement enables a person to set out their treatment preferences should they become subject to compulsory treatment (Mental Health Act 2014 (Vic), section 19). While the Mental Health Act 2014 (Vic) does not specify this, an advance statement may also include additional information that the person would like the team treating him or her to know about, such as arrangements that need to be made to look after dependents or a pet. An advance statement must be in writing and witnessed by an authorised person (section 20). The preferences expressed in an advance statement can be overridden if a psychiatrist is satisfied that the preferred treatment is not clinically appropriate (section 73).

Some carers interviewed thought that the impact of an advance statement on their caring role would primarily involve their informing their family members about it, and helping them set one up according to the formal requirements. As Elena said: ‘I don’t know that it’s any great impact on carers … It’s more for the person with a mental illness and their rights I think’. A few carers said there could be more or less appropriate times for carers to help their family members prepare an advance statement. Sue thought the onset of ‘mental illness’ could be too early a stage for carers to support the person being cared for to write one, and Laura felt when the person cared for was ‘unwell’ he or she ‘would not have the capacity to be able to write down exactly what he or she wants’. Some people raised questions about the suitability of advance statements for teenagers.

Sue felt carers should consider the person cared for’s stage of life and ‘illness’ if they supported them to specify their preferred medications in advance.

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Advantages and disadvantages of advance statements

Most people interviewed thought the people they supported could find the process of preparing an advance statement when they were ‘well’ as a way of exercising, in Sasha’s words, ‘a feeling of power’. It would allow them, as Lisa put it, to ‘put down on paper … what they’ve learnt from their own experiences’. Tracey saw advance statements as ‘really important’ because they offered a way for people with severe mental health problems to feel they have a say in, and control over their medication: ‘they know themselves best … it’s important that they would have a say in what medications don’t agree with them’.

For Rowan, advance statements give people diagnosed with ‘mental illness’ ‘a voice’ when their voice cannot be ‘heard’.

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While some carers described the potential for advance statements to benefit carers’ capacity to support the person cared for’s treatment decisions, others talked about ways in which they thought advance statements could potentially disadvantage carers and the person cared for. For Elena, a potential help for carers would be if the person being cared for specified in an advance statement that their carers could be ‘trusted’. As she explained, ‘my son would think I’m a great support to him most of the time, but when he’s unwell he’d probably say, “Have nothing to do with her!”‘. This could assist carers who Elena said can be at risk when their loved ones became ‘unwell’ of being put ‘out in the cold with services who don’t know them’ in the context of both voluntary and compulsory treatment decision making.

Katherine thought the advance statement could give carers who lacked ‘confidence’ a sense of assurance that they could act on the preferences their family members had specified.

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While Elizabeth thought those with mental health problems being able to specify their preferences in an advance statement would give people a feeling they had ‘more control over what happened to them in their life’, in certain situations she believed it could be ‘tricky’ to comply with their pre-specified wishes: ‘If you say, “I want to go to a particular hospital and it’s not possible, a lot of that would have to have little caveats … some of that may be impractical given an emergency situation’. Mike wondered if specifying in an advance statement the medications his wife knew had ‘worked’ for her in the past could ‘close off’ options for trying other medications.

Nominated person

A nominated person can be appointed by a person who is being compulsorily treated to provide support and represent his or her interests (section 24 and section 23(a)). Nominated persons must be consulted about treatment (section 23(c)) but cannot make a decision on behalf of the person being treated.

Changes introduced by the Victorian Mental Health Act 2014 made it harder for practitioners to ‘hide’ from carers ‘behind privacy and confidentiality’, Elena said.

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A few carers talked about their understanding of how changes introduced by the Victorian Mental Health Act 2014 would affect what carers can legally expect to be told by practitioners about the person cared for’s treatment, and discussed how a ‘carer’ differed from a ‘nominated person’. Rowan defined a carer as someone who knew the person being cared for ‘really well’, whereas he thought a nominated person might not have known him or her for a ‘very long time’ or ‘very well’. A few, like Katherine, raised the question of whether both carers and nominated persons could receive information: “I’m not clear about whether if you’re not a nominated person you can receive information or not”. On this question, the relevant section of the Act is 346(g), which enables disclosure of information in general terms to a friend, family member or carer, providing this is not contrary to the views and preferences of the person concerned, while section 346(h) enables disclosure of information to carers where this is reasonably required for determining the nature and scope of the care to be provided.

Tracey’s knowledge of her partner’s wishes in the past was her ‘point of reference’ when she spoke on her behalf ’80 per cent of the time’.

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Elena explained how the process and content of receiving and giving information about compulsory treatment differed depending on whether a person was a carer, a nominated person, or both.

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Trust

Many carers said the nominated person was important for people diagnosed with ‘mental illness’ because it meant they could feel they had someone they can ‘trust’ in their ‘corner’, as Sue put it, if they became ‘unwell’. Many carers interviewed talked about the importance of the nominated person being someone who could be trusted to know the views and preferences of the person they were representing well. Once, when her daughter experienced a relapse, Marta recalled her daughter gave ‘power of attorney’ to her new boyfriend at the time. Marta said he ‘hardly knew’ her daughter, which was ‘very hard’.

Tracey was concerned that people might feel they had to put down a family member as their nominated person who might not know them well.

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Elizabeth talked about why she thought it was important for some people diagnosed with ‘mental illness’ to be able to nominate someone who was not their carer or relative.

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Several carers talked about the impact of times when the person being cared for was ‘unwell’ on their relationship. A few people described how their family members had often become suspicious and lost trust in them as their carers when they were ‘ill’. As Marta said: ‘the ones closest to them become their worst enemies’. Others, such as Elizabeth and Lisa, said the person cared for did trust them when they were ‘unwell’. Elizabeth talked about how building a trusting relationship provided a foundation for carers to better support the person cared for to seek, accept and receive treatment in compulsory and non-compulsory contexts.

Following a voluntary admission, Lisa said her brother’s doctors asked her to persuade him to agree to undergo Electroconvulsive Treatment (ECT).

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Elizabeth said her son’s psychiatrist encouraged her son to ‘trust’ in her to give him feedback on whether he was more ‘well’ or ‘unwell’, which she said made her feel ’empowered’ because then she was not just a ‘passive observer’ but ‘a part of’ her son’s treatment. Sue talked about the importance of a person diagnosed with ‘mental illness’ having someone who practitioners could trust to have insight into the person cared for’s condition: ‘It’s up to the people around you, who can actually tell the doctor, “This person’s capable, you can talk to them, they’ll understand”‘. A few, like Marta, said they thought if carers lost hope in the possibility that practitioners and the system could support them to support the person cared for’s treatment, then eventually carers might ‘collapse’ or ‘turn away’ from supporting the person cared for.

Mike didn’t see how the mechanism of the nominated person would give him an extra ‘level of comfort’ since he already put his ‘trust’ in his wife’s psychiatrist to do the ‘right thing by her’.

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Laura said carers might not ‘hang around to care’ if they were unable to have ‘access’ to practitioners.

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