Carers’ views on advance statements and nominated persons

What do you think about the nominated person?

I was looking at that on the Vic Government’s website and it’s sort of – it doesn’t really apply to me, as such, because I’m a spouse and so it seemed to me that the nominated person was more – that the definition and the guidance and all of that seemed, to me, to be more if a person didn’t have family or anything, but had sort of a close friend that may be able to help in time of need.

The nominated person can be a family member.

Yeah, I realise that. But I’m thinking that the way that the Act has worked out now, the carer has so much input that a nominated person – Yeah, I think it’s important, but my concern would be, and I’ve heard it raised by other people is, just how far do you want that nominated person, do you want them to have 100 per cent, like I have with my wife, or just how far does that involvement sort of go? So my understanding of the nominated person is pretty minimal because I haven’t needed to know it any further than I already have.

What could be problems with over-involvement, as you see it?

Not really being at one with the person who you’re caring for. Like, we’ve been married and together for, well, 20 years, say and so we’re almost thinking in sync and stuff like that. But if you’ve got somebody who hasn’t really had that time, they could make decisions based on their own thinking and their own judgement rather than really conveying, because they don’t really know that. So there could be a bit of a problem there, so really, you’re just transferring the psychiatrist’s decision to a nominated person’s understanding and decision, which still may not necessarily reflect what the person fully wants.

Whereas the advance statement has got, to me, far more power, if the person is compos mentis. But I think that it depends, how much weight you put on a nominated person would depend on how much involvement that person has in the day-to-day life of the person that they’re caring for and how much they’re really in sync with their thinking.

If the person has a mental illness and you tell them they have to take CLOPINE (clozapine) and they don’t know what CLOPINE (clozapine) is and they can’t research it because they’re so ill, they don’t know what they’re taking – further down the track, yes. In the first, maybe in the beginning it’s best not, it depends on how ill they are, right? And where they are in their life. If they’re elderly and if they’re, how can I put it? If you can actually tell someone and they know what CLOPINE (clozapine) is, they’ve done their research, that they’ve got a mental illness, they’ve got to take CLOPINE (clozapine), then they will come to, they will understand that.

But if someone who was as young as [son] at, it depends on the age, it depends on the circumstance, it depends on the geography, the dynamics of the circumstance. You cannot put everyone on the same, in the same category. Every person has an individual plan and every person is, should be tackled differently. Because they’re at different stages of their life, different education, different background, different abilities of understanding, different mental disorders. It’s different for everybody.

At 14 you wouldn’t say, “Hey [son], do you reckon it’s a good idea to take CLOPINE (clozapine)?” It’s like, ‘What the hell are you talking about [laughs], what am I on?’ He was, I mean you can’t – no, you can’t. It depends, that has to be done by a group of professional people, yeah. It needs to be done by a group of people who would determine whether that person is capable of making decisions for himself. And if they see that they can’t make those decisions, they should not be making those decisions.

Initially the carer and the consultants and the specialised people should be making the decisions. But if they feel like the patient is unable to, and then once the patient becomes well enough and with the consultant or some case manager, if their case manager recommends that they now have control and they’re well enough to make their own decisions, co-decisions with the carer, then yes, they should be able to make their decisions. But not when they’re, no, not at 13. Not when they’re not able to. No they’ve got to be allocated some, some adult to help them out.

Yeah, well, to me the advance directive is sort of when we’re getting down to the tin tacks of it and the person isn’t really able to make informed decisions at the time, that they have already indicated certain elements of what they would like to have done in their treatment and all the rest of it and that the carers and the treating practitioner or psychiatrist will take that advanced statement into account, unless it’s not practical to do so on a medical for whatever reason that what they want and what’s good for them are two different things, sort of thing.

It gives a client a voice when their voice can’t be heard because they’re not mentally well enough to do it, sort of thing. So it guides, it’s a good guide. I guess it’s more a guide, than anything on where the patient wants to go. How good is it? I think that’s important, you know, they had the old do not resuscitates, now they’ve got those sort of things, as well that, I think that’s important, that a patient gets the opportunity to put it in.

My wife’s advanced statement is me, ask him [laughs]. Yeah, it’s simple as that, because unless I tick the box, it ain’t going to happen and we’ve been like that for the last two years. Any time that there was something that they wanted to consider changing or anything like that, [she] said, “Just, talk to my husband first”, as simple as that.

I think the advance directive’s terrific because it gets the person when they’re well, thinking about what they want. And so for people [carers] who have some reluctance about doing what’s in the best interest of that person, then it gives them the author-, well not a real authority. But it gives them the confidence to do what they’ve discussed with that person. And it, I think from memory, though, they can withdraw that advance directive. So when they’re unwell they can withdraw that, but really it’s just a statement of their preferred way of doing things. And so, for people who don’t have the confidence, it gives them the, you know, that confidence to say, “Yeah, well this is what you wanted then and I’m going to go with it”.

And the nominated person – I’ve been to talks about that and I’m not so clear on what that is. I think it’s where the person is nominated by the consumer to be their advocate. Is that what it is?

Look, the first Mental Health Act, and I can’t think of the dates, but there were changes made in the ’90s, late ’80s-’90s. No, there was, I think ’86 was the first, the one that I remember. Then there were changes in the ’90s to supposedly make it easier for carers to have access to [health] information. People who understood carer issues, even before the changes were made, would give carers appropriate [health] information, alright? The changes to the Act were meant to spell it out so that, you know, they weren’t hiding behind privacy and confidentiality where it was appropriate to give carers – now the Act makes it very clear what [health] information can be given to carers and when, it’s just spelled out very clearly.

So hasn’t really changed what’s possible or what should happen, it’s just the understanding. And people can still read it and, you know, make their own interpretation. But what they’ve done is try to make it a lot clearer and so that carers can be given the [health] information that’s appropriate for them to get. And that [is appropriate in the sense that] they need it in their supportive role.

And, so, is someone with severe depression, by the very nature of depression, it sounds, from what you’ve been saying, that she’s, in your particular case, it’s almost the submissiveness is almost a lack of energy to speak out and …

Yeah, I think so. It’s just a lack of, yeah, I think not having the energy to say what you think, because someone else might have a differing opinion and then you then have to defend yourself or stand up for yourself. I think that lack of energy would be the major part of where the submissiveness would come from.

And then if a decision, you know, any capacity to make a decision is really having to go back to, you know, knowing your own mind or having, being able to have your own voice and having that energy. Then the person, the carer, the person caring for this person, when you kind of support her or speak for her, are you thinking about what she, are you seeing it from her perspective? If you know what I mean? Are you imagining what you know she’s been like in the past?

Yeah, I think that would be, that would be my point of reference for when I’m standing up for her or voicing her opinion would be what I know she thinks from, you know, past being well. I know quite, quite well what she would think of different people or how she, you know, would want to be treated or how she didn’t like being treated. So, I guess, that, yeah, I think that would, that would always be some, or one of my first considerations when I was trying to voice her opinion. But, you know, it’s hard to say that you don’t, that you always do that. You probably do do it maybe 75 to 80 per cent of the time, and then 20 per cent of the time you’re just doing what, you know, you think is best for them, I would think.

But always within the parameters of knowing what they definitely wouldn’t want?

Yeah. I think in those parameters.

And finally, what do you think of the nominated person?

Again, it’s easier for services if they’ve got that. Now not everybody fills one out. They don’t have to. As a carer – a lot of carers have felt a bit put out if [the person cared for] put someone else as the nominated person. But the Act states that the carer still has to be taken into consideration. If the nominated person is a carer, they’ve got two roles. They’ve got the role of the nominated person, which is to state what they know as the wishes of the person when they’re well, what they’ve said, so that their knowledge of the person as to, so they’re an advocate basically for the person. They can’t dictate anything. They can just advise what that person’s wishes are.

As a carer, the role is more the advice of how the person’s going, how they are and their belief as to what’s best for the person. And a nominated person, it’s not their belief of what’s best, it’s their knowledge of what the person wants, is my understanding. So, the carer has two roles if they are the nominated person. I don’t see a problem with that myself, but the Act states that the nominated person must be advised of certain situations, and that’s if someone’s hospitalised, if they’re discharged, if they’re having a change in treatment, if they’ve been in seclusion.

So there’s certain times, or if there’s a variation on their treatment order. The carer also needs to be advised of those things if the psychiatrist or his delegate believes that their role, their life [of carer] is impacted. If there is support for the person, their main support, and their life is impacted by that person’s illness.

In terms of a nominated person, I guess it’s difficult because, if you’re talking about somebody that may not have a great support system around them, you know, who do they nominate? That the person that they may be nominating might not necessarily be someone that they trust, but they think that, you know, they have to nominate someone, or it may not be someone that does have their best interests at the very core, but they think they do or, because of their certain role, like a mother or a father or whatever, or their certain title of a mother or a father or, you know, whatever, they think that they should put them on there. But, necessarily, that that person’s actions might not be a role that they actually provide.

But might your partner, for example, want to nominate you?

I would say so. In some respects, but then, at the same time, yeah, I guess so. But, in my case, she does nominate me to all her medical professionals in her own right anyway. That, you know, I can talk to them. But, I guess, a legally-binding document is a different kettle of fish. But, I guess, if you’re talking of shortcomings, that that could be one if it’s a required treatment.

I think it sounds a great idea, yeah, I think it really does. Certainly a nominated person, because not all, I mean knowing the people that my son’s met and I’ve met through his illness, a lot of them haven’t got family that they can call on to be – You need to be able to nominate someone who’s not necessarily a relative, I think, to be [your] support person. Some people have such terrible, you know, relationships with their families, it doesn’t work.

But I think nominating someone who will support you and that you feel comfortable with, as long as, I guess I’m always aware of, that those people are aware of what is, what would be involved themselves. Because it’s, as a parent, I feel like I’m not just going to run out on my son because it gets a bit hard, but there may be people who are there in a different sort of relationship who will find it really too hard. So I think you’ve got to, people who are being the supporter do need to realise just what’s involved, and just, yeah. You probably need to have known them for a while, I would have thought.

I think it’s really hard when you’re in a crisis situation, because in terms of making any decisions, you really just want to trust someone who will make whatever decisions are possible to make him better. But I think when you’re not given enough information about the options that they’re using, it’s hard to have any comfort or trust that it will achieve that aim. So for me, I was okay with him having ECT, because I had seen that it had worked [four years ago]. But it was very difficult to be in a situation where it was obvious that he didn’t want it, because he didn’t want to, you know, walk into a room and forget why he was in there, which is what we saw, you know, for a few months after his treatment [four years ago]. And he remembers not remembering things. So it’s very difficult to kind of navigate that.

I really think it depends on each person, each carer and each consumer, but for me, I find decisions easier to make when I have lots of information. And I think that’s a huge thing that’s lacking in the public mental health system. I think there’s good intentions, but because of resources and time limits and how difficult it is to even, you know, get hold of consultant psychiatrists in the wards. They’re very hard to pin down. You’re not often given any information.

We were given some crappy flyer about ECT, but, I don’t know, unless I understand how something works, and no one understands how ECT works really, it’s difficult for me to feel comfortable with anything. Especially if I have to try and persuade my brother, which is effectively what they were asking me to do. You know – “If you don’t want him to be made involuntary, then you need to convince him that this is the best course of action”. Which is a lot of pressure to put on an already strained relationship, when I’m, you know, burnt out from being in the situation for however many months and he’s really agitated and quite difficult to kind of talk with.

And did you have to try and do that? Did you have to sit down with him and say…

Yeah. With mixed results, depending on what mood he was in on the day.

If you were the nominated person while your wife’s in hospital, then the mental health practitioners would feed information to you about the kind of treatment, or her condition.

The pros would be, at least you know what’s happening. And I believe that they do that anyway. Like, if I wanted to know I’d just send an email to [psychiatrist] and say, or to the doctor and say, “What’s going on?” And he’ll tell me. But in a way, how does it help you? How does it give you a level of comfort? You trust the doctor. That’s what they’ve studied. You trust, unless they do something, and I don’t believe that they’re infallible. I don’t believe that, now that I know that it’s just something that needs to be managed, I trust [psychiatrist].

I know he’s going to make mistakes and I trust that he’s going to do the right thing by [wife]. Whether that information, how does it help me? You know what I mean? It just doesn’t. I just … For me, it’s just more about: is she getting the best treatment available for what I can afford? And at the moment I’m lucky that I can scrape through it and do it and give her, provide her that public health system. And all I could say there, if she didn’t, well, it’s not bragging or anything, but if she didn’t have me she wouldn’t have that support.

How about the nominated person, the idea of a carer or a family member, or a friend being able to receive information from the psychiatrist and speak for the loved one to the psychiatrist at certain times. What do you think of that idea?

Oh, I think it’s necessary. I feel that carers won’t be hanging around to care if they’re unable to liaise in a productive manner with the medical staff, because they’ll be throwing their hands up in the air going, “Okay, well you want to deal with it, you don’t want me to be involved, you have it all then. I’m trying to help you in your job and have this person at home and not in the hospital system. If you want it, take it”. I feel it’s very important for the carer or the nominated person to have access and liaise with medical staff, yeah. It comes back to, I guess, better diagnosis – the ability to care for the patient or the loved one.