Recognising the role of carers in supporting their family members with severe mental health problems to make decisions about their treatment is a key objective underpinning supported decision making mechanisms established by the
Mental Health Act 2014 (Vic) (section 10(h)). The Act also emphasises one of the main objectives is to ‘enable and support persons who have mental illness… to make, or participate in, decisions about their assessment, treatment and recovery’ (section 10(d)).
The Act enables people with severe mental health problems to make an advance statement about their treatment preferences (sections 19 and 20), including in relation to compulsory mental health treatment. While not specified under the Act, advance statements may also include other information the person concerned would like the team treating him or her to know about, such as arrangements for the care of dependents or a pet. Under the Act, people may also nominate a person to represent their interests (section 24) should they become subject to a compulsory treatment order. A nominated person must be consulted about treatment (section 23(c)) and their role is to provide support and to represent the interests of the person who has nominated them (section 23(a)), but a nominated person cannot make a decision on behalf of persons being treated.
The Mental Health Act 2014 (Vic) also includes the right for people diagnosed with ‘mental illness’ to be provided with a statement of their rights (section 12) which must be explained to them (section 13), to seek a second psychiatric opinion (section 79), and to make a complaint to the newly established Mental Health Complaints Commissioner (section 232). They may also access Independent Mental Health Advocacy, a newly established service to support people on compulsory treatment orders.
Supported decision making mechanisms put into practice two of the Act’s guiding principles that people receiving mental health services should ‘be involved in all decisions about their assessment, treatment and recovery and be supported to make, or participate in, those decisions, and their views and preferences should be respected’ (section 11(1)(c)); and ‘be allowed to make decisions about their assessment, treatment and recovery that involve a degree of risk’ (section 11(1)(d)).
The mechanisms that have the most bearing on what carers can do to support the person being cared for to make decisions about their treatment are advance statements and nominated persons. This Talking Point is about how carers interviewed learned about advance statements and nominated persons, and about factors they thought could influence the usefulness of these mechanisms for carers wishing to support the person cared for’s decision making about their treatment. For carers’ views on advance statements and nominated persons, see Carers’ views on advance statements and nominated persons.
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How carers found out about supported decision making mechanisms
The importance of ‘insight’
Losing or gaining control
Tracey said she thought supported decision making and a ‘collaborative care team’ were ‘vital’ for recovery.
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I think it has to be in some respects a collaborative care team around the person that is suffering the mental illness in the point that they still do need to be empowered with that they have a say in their care, because otherwise their road to recovery or their ability to recover is going to be diminished because they don’t feel like they’re in control of anything. So, I think it’s important that they still are involved in their care. I guess it’s the capacity in which they can be involved in some respects. But I think that supported decision making kind of makes a lot of sense with mental illness because, I guess, in our first instance of it, we, you know, it’s a bit of the unknown and you’re given this information, but you’re not quite sure what to do with it. So, that really, that care team and supported decision making is vital in actual recovery processes.
How carers found out about supported decision making mechanisms
In order for carers to make informed use of supported decision making mechanisms such as advance statements and nominated persons to help support the person being cared for, they must first be aware that the mechanisms exist. Of the carers interviewed, a few were well informed, some had partial knowledge, and many heard about the mechanisms and the Mental Health Act (2014) for the first time when we interviewed them. Those who knew about the Act had mixed views. For Rowan, the new laws allowed more ‘input’ from the carer than in the past: ‘people are taking carers a little bit more seriously now than they ever did, because it’s legislated… they’re trusting carers more, I think’. However, Marta described how she and other carers felt the legislative changes were going to make things ‘more difficult’ for carers: ‘already the carers did say, you know, that they all feel it’s in favour of the consumer and there’s nothing in it for the carer, I would say, nothing’.
People we interviewed who already knew about advance statements and nominated persons said they found out about them through mental health organisations, carer support groups, the internet and through work. None of the carers we interviewed said they learned about these mechanisms from the person cared for’s treating mental health practitioners. Katherine attended ‘talks’ on nominated persons put on by a carer support group, while Elena and Alexia, who worked in the mental health system as carer consultants, found out about the mechanisms through their paid and voluntary work. Rowan said he came across information about them on ‘the Victorian State Government’s website’.
Lisa told her brother about advance statements after she went to a ‘focus group’ on them run by a mental health organisation.
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And how did he come to know about [the advance statement]? Was that something that he said to you, ‘This is something’? Or do you know if you consulted him?
Well, I went to a focus group on it with, I think it was run by [mental health organisation], but held at [unclear], or maybe they did it together. I’m not too sure. So I kind of found out about it first and then told him about it. I think it would have been helpful to us in the past year, when he was in and out of hospital. He had six admissions in the last year. And all but one of them were completely pathetic. So having something like that to draw on would have been really useful.
Jeannie first heard about nominated persons when her son appointed her as his nominated person on ‘paperwork’ he filled out when he was admitted to a mental health unit.
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A Nominated Person is a person that can be a carer or a family member, or a friend who is nominated to receive information about the person…
Yes, I’m one of those. That was in the paperwork, I think, when he was admitted to the mental health unit.
What do you think of that? What do you think of those two tools, the one that you already are?
The one I already am is useless to me. I mean, how does it help me provide, how does it help me get the treatment my son needs? I don’t understand how it can. So, I think all, again, that is just a buck-passing invention to pass some of the responsibility or more of the responsibility off the mental health system, on to carers. That’s my opinion of it, right, wrong, or otherwise.
The importance of ‘insight’
Many people thought the usefulness of advance statements or nominated persons for assisting carers to support the people they cared for depended on whether or not the person cared for had ‘insight’, as Kate put it, into their mental health. Some said the mechanisms might, in Alexia’s words, ‘work’ for people diagnosed with ‘mental illness’ who had come to an ‘acceptance’, as Kate described it, of their mental health problems. However, a few, like Sasha, felt the mechanisms would help her support her son even though she thought he had ‘no insight’ into his ‘own mental health’.
Supported decision making mechanisms were less ‘valuable’,
Alexia suggested, for carers of people with severe mental health problems who ‘live in denial’.

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Maybe it’s valuable for some people. Not the person who lives in denial. The person who lives in denial, he’s not going to do it. They have to work with the family. Even with the advance statement, the treating psychiatrist, they can override that. When it comes to treatment and the psychiatrist can see that he doesn’t know he should be on such a medication or do ECT. And without the consent they will do it. So the psychiatrist can override that. They said that we can call the [Mental Health] Complaints Commissioner and we can ask for a second [psychiatric] opinion. By the time we get the second [psychiatric] opinion it will be too late. Because by the time you arrange for a second [psychiatric] opinion the damage is done and the psychiatrist will do whatever needs to be done. So it can be overridden. But if they involve the carer in the treating, in the treatment decisions, and they listen, we can, this prevention state, it can be done.
Instead of an advance statement,
Iris thought there should be ‘a document’ that enabled people with ‘mental illness’ to appoint their carer to ‘make decisions for them’ should they become ‘unwell’.
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Why not say, you know, when you’re not well there has to be somebody who can make decisions for – is it okay that this person does that for you? Because if you ask him to make decisions about not having this and not having that and he hasn’t got an idea, a clue what – if you know he doesn’t look up things, he doesn’t do the research. And he’ll just say something just like with the ABILIFY (aripiprazole) for example, he just thinks that’s what made him fat so he says, “I don’t want ABILIFY (aripiprazole)”. And they gave him something else that’s even worse. Because he doesn’t even look up or know what’s in there. So I don’t see an advantage of having any beforehand when he’s never really well to put in stone decisions that he doesn’t understand and when there is a person who actually, you know, does do more of the research and know more. And why not sign a document that [says], if you’re not well, this person is allowed to make decisions for you.
A few carers said the mechanisms seemed to assume there were times when the person cared for was ‘well’. However, in Dianne’s experience, her son, who had been diagnosed with a particularly ‘severe’ form of schizophrenia, was ‘never really well’. Iris, too, said she had not seen her son ‘really well for years’. She thought there would be cases where it would be difficult to identify when a person was ‘well enough to decide’ what his or her preferences were in order to include them in an advance statement or to appoint a nominated person.
Others talked about how the usefulness of the mechanisms for carers might depend on whether the person cared for was happy for him or her, as a carer, to be involved in discussions around treatment. For example, Kate said her brother was not comfortable talking about his treatment with her and her mother. This meant they felt a ‘bit of fear’ that he would ‘crack it’ if they broached the possibility he could be made subject to compulsory treatment in the future, which they would need to do in order discuss advance statements or nominated persons with him.
Losing or gaining control
For many carers, the usefulness of mechanisms such as advance statements or nominated persons to support the people they cared for depended in part on whether the person cared for saw the process as one where they exercised or gave up ‘control’, as Tracey put it. Ballagh thought her son would see the process of preparing an advance statement or appointing a nominated person as one that required him to ‘relinquish control of his mental health care’. However, many carers, including Sasha, said they thought their loved ones could derive ‘a feeling of power’ from the process of setting the mechanisms in place.
Sasha thought her son would find the process of preparing the supported decision making mechanisms empowering.
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And I was wondering if I could ask you there’s two tools, the nominated person and the advance statement that’s being brought in as part of the new mental health legislation in Victoria and I wanted to ask what you think of these two tools. The advance statement, it’s a statement that the person, the patient or your son for example, that he can put together while he’s well in which he can specify what sorts of medication he prefers to have. Yeah, so I guess the name of it really gives you a sense. It’s so that they can think about the possibility that they’ll be unwell in the future and write down where they’d prefer to be treated, like a particular hospital. And the nominated person can be a family member or a friend who the person, so your son, nominates to receive information when he’s unwell from the acting psychiatrist or clinicians and to advise as to what the nominated person thinks your son, for example, would want.
Oh, I think that’s excellent.
Can you say why?
Yes. Because it gives them some sort of, you know, power over their own minds and bodies because you know when things are enforced on you of course you reject them straightaway. Whereas when you have a say in something you’ve got a feeling of power. I think with my son that would make a huge difference to, to his acceptance of any treatment.
Lisa said her brother had asked her to help him write an advance statement and they planned to have a ‘dialogue’ about it when he was more ‘well’.
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But how important is it for people to have a role in making decisions about the treatment options that are presented to them? I was wondering if you could talk a bit about why you see that as important for your brother?
I think it’s important because my brother knows his condition and in times where he doesn’t, or he’s not well enough to comment on it, then I certainly know it. I mean, it’s been 19 years and even though it has changed and evolved in that time, there are some consistencies in it. And I feel like we’re better placed sometimes, not all the time, but sometimes, to comment on it, rather than, you know, the rotisserie style of clinicians that we see in public wards, where he might meet with one student psychiatrist one day and a different student psychiatrist the next day. I mean, it’s not a criticism of them, or even of the system.
I’m perfectly aware of the funding realities that exist, but there’s no way that they can know him in a, you know, 20-minute consultation as a student with, you know, very little experience up their sleeve. So I think there’s definitely a time and a place for us to have input in what’s happening with him. And I think things like the advance statements are really good for my brother, because he has lived with his illness for so long and he does have some, he knows a lot of the medications inside out. And he does have some strong opinions about what works for him and what doesn’t. But when he’s unwell and you try and get that out of him, it’s pretty difficult. So if there’s something that they can refer to that shows his preferences, I think that will be helpful.
Does he have one?
Not yet. We’re working on that.
And how are you – could I ask how you’re working on it?
I think because my brother has only really come out of this episode in the last month, I’ve only started to see some kind of consistent good days in the last month. We’ve spoken about the existence of the advance statements, but I think it’s still – the trauma of the past year is still too fresh to really talk about therapeutic stuff in any great detail. But he said that he wants to write one and he’s asked me to help him, you know, so we can have a dialogue about it. But yeah, I think it’s still a bit too fresh.