How to increase participation in decision making

The guiding principles of Victoria’s Mental Health Act 2014 require that people with severe mental health problems ‘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)); as well as requiring that they ‘should be allowed to make decisions about their assessment, treatment and recovery that involve a degree of risk’ (section 11(1)(d)).

In order to put these principles into practice, the Mental Health Act 2014 enables people to make advance statements about their treatment preferences (Division 3), nominate a person to represent their interests (Division 4) and be provided with a statement of their rights which must be explained to them (Section 13).

Quick Links

The role of psychiatrists and GPs
Supported decision making in hospital
Family involvement
Advance statements and nominated persons

Sarah explained that when you become ill a part of you is ‘broken’ and this is harder to deal with if other people are making decisions for you.

For the people we spoke to, participation meant having an environment in which their perspectives on care were sought and valued. This could mean different things at different times. Most people felt participation had to be person-centred and based on good communication, good case management, and equality (see Support in treatment decisions).

For Simon, equality was critical.

The role of psychiatrists and GPs

There is a clear role for psychiatrists and GPs in providing supported decision making. This does not necessarily involve new procedures but requires focusing on the quality of the relationship to reduce the ‘us and them divide’ (see Advice to others: Health, mental health and allied health practitioners, Experiences with mental health practitioners: Psychiatrists, counsellors and others, and Experiences with GPs). Lisa said that having a good psychiatrist meant that she hadn’t needed many additional services. She described how she had many friends who did not have a good psychiatrist who did not ‘discuss what’s happening’ with them. Consequently, Lisa thought, those friends needed a lot of additional services ‘to compensate’.

Care, and where possible collaboration, created the right context for participation. Nicky spoke about the need to ‘look at the whole person holistically’, and said people wanted to be given advice that ‘makes them feel satisfied when they leave’ the consultation room. Susana expected medical practitioners to find ‘out what the problems are, the root, the true problems, so they can help’. Helen said staff were so ‘overloaded’ with work she ‘didn’t feel that they really cared’. Michelle said people wanted to ‘talk about what’s going on and be validated and have someone engage’.

David described his psychiatrist as taking a ‘collaborative’ approach to finding a medication that suited him.

Some people said it was important to look at all the treatment options and alternatives. Brendan said ideal care meant being told ‘these are some treatments that might work, go off and try them… and then being able to come back and say it didn’t really work, or I’m still struggling’. He didn’t think people were presented with a choice – ‘just this will make you better, take it or leave it’. Cindy said she found not having any choice about her treatment was ‘frustrating’. She felt that ‘you’re just bunged on something and hope for the best’.

Anna said her psychiatrist was ‘progressive’ and thought about real alternatives to getting her well.

Tanai thought that when people were unwell it was harder to make decisions, but said they still needed to be given a choice.

Supported decision making in hospital

The environment in which decision making takes place can have an impact on whether people feel part of the process. In hospital, many people felt communication from staff was inconsistent and spoke about times where they felt that had not been trusted. As Lisa said, she felt a ‘bit like a criminal’. Feeling as though they were being ignored or misunderstood were common experiences described by people we spoke to. Some people felt that it was important to have things explained, like why razors, lighters and hair straighteners were taken away when there was no history of self-harm, why a photograph had to be taken on admission to hospital, or why particular drugs were being prescribed or changed.

Taking into account people’s experience of the world, and how their immediate environment might affect them was very important for some people. For Bernadette, having newspapers taken from her and not being allowed telephone calls ‘fed into’ her ‘psychosis and paranoia’. Carlo said being in hospital ‘with psychosis’ was terrifying. He wrote a 12 page letter to the hospital about all the things that he found difficult and how they could have been avoided.

Involuntary admission to hospital can make it even more important to treat people with adequate care. Nicky suggested advance statements could help.

Being admitted to hospital and leaving hospital were times when people could feel particularly vulnerable (see Hospitalisation: Daily life and treatment). Lisa said there should be ‘more transparency’ about the referral process to hospital and about discharge from hospital.

Brendan was still feeling suicidal while in hospital when he was told in a meeting, ‘You’re leaving today.’ His psychiatrist apologised later.

Being in a private hospital had benefits for some people. They described getting ‘respite’ and having personal choice. However, despite being in a private hospital and therefore being treated on a voluntary basis, Michelle felt she didn’t have things explained to her. Her family was not involved in decision making and she felt a lack of ‘control’. Michelle said this contributed to her being non-compliant with her medication.

Charlie mentioned the benefits of going to a supported residential service in the community as an alternative to hospital care. Charlie said staying for short periods in supported residential service enabled her to ‘bypass’ the hospital environment, which could be ‘very traumatic’.

Family involvement

People often thought having family support was important (see Family and friends). But some felt having family present made things more complicated.

When Ann was seeing a psychologist, her mother used to sit in. She felt she didn’t have the freedom to ‘speak out’.

For those who did feel supported by family, it could be a relief to know that their family members were welcome and were also able to access support and speak to mental health professionals. Nicky thought carers were often not very empowered and needed support structures themselves.

Lisa felt ‘quite supported’ in hospital and talked about the support given to her parents by hospital staff.

Advance statements and nominated persons

Advance statements were introduced under Victoria’s Mental Health Act 2014. They allow a person to set out their treatment preferences should they become unwell and require compulsory treatment (section 19). Advance statements can also include additional information that the person would like the team treating them to know about, such as arrangements that need to be made to look after dependents or a pet.

Ann has an advance statement and explained what was in it.

Quite a few people knew about advance statements and had one in place. Chris said his advance statement specified that he didn’t want electroconvulsive treatment because he knew his symptoms would ‘go away over time’.

Some people hadn’t heard of advance statements but were excited about the possibility of being able to express their own views and preferences. Charlie said, ‘that is a great idea. I want to sit down and write one for myself!’ Maria wished that advance statements had been available for her to use when she was a teenager. Brian was concerned about what would happen to his dogs if he was ill and saw the benefits of having an advance statement. But he said he’d never written anything down because he preferred to speak to staff when he needed to.

There are formal requirements relating to the making of advance statements in that they must be in writing and witnessed by an authorised person (Victorian Mental Health Act 2014 (section 20)) and the preferences expressed can be overridden if a psychiatrist is satisfied that the preferred treatment is not clinically appropriate (section 73). Ann found it ‘a bit annoying’ that advance statements can be overridden while Nicky thought ‘the psychiatrist needs to have the last say’. Luana thought it might be ‘quite hard’ for a doctor to follow an advance statement (for example refusing certain treatments) when someone is in an acute state. She thought it was more important to focus on helping people to recognise their symptoms when they were becoming unwell.

Jenny talked about how she thought the ultimate decision should be managed where there is an advance statement in place.

Under the Victorian Mental Health Act 2014, a person who is being compulsorily treated can nominate another person to support him or her and help represent his or her interests (section 23(a)). That person must also be consulted about treatment (section 23(c)), but cannot make a decision on behalf of the person being treated.

People said that the quality of the relationship with their ‘nominated person’ was important. Charlie’s first reaction when she heard about this role was that she would find it hard to approach a family member to support her in this way, although she did have people she could trust. Lisa said if she had to trust someone to implement her wishes in the future she would prefer to trust her psychiatrist, rather than her mother or husband, because her psychiatrist has a ‘professional perspective’. Lisa didn’t think her mother ‘would be able to separate that emotional side’. Ann, who had experienced electroconvulsive treatment to which she hadn’t consented, didn’t speak to her husband about treatment options because she ‘was in a healthy amount of denial’ and was ‘grieving’ for the life she felt she had lost because of her severe mental health problems. Ann said she ‘shut him out’ so he made decisions based on what the psychiatrist and treating team told him was the best thing to do.

However, involving a family member or carer by making them a nominated person could have additional benefits. Taylor thought it would be good to have her partner involved in the consultations with doctors more so that he could ‘understand a little bit better about my mental health’.