Support in treatment decisions

One of the main objectives of Victoria’s Mental Health Act 2014 is to enable and support persons with severe mental health problems ‘to make, or participate in, decisions about their assessment, treatment and recovery’ (section 10(d)). An important guiding principle is that those ‘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)). Making and participating in decisions about assessment, treatment and recovery may be aided through the use of advance statements (Division 3) and nominated persons (Division 4).

In practice, these recent changes to the Mental Health Act mean people who received various psychiatric diagnoses now have the right to be more involved in decisions relating to their treatment and care. This Talking Point is about people’s experiences of when and how they had been or not been involved in treatment decisions, including times when they found it difficult to make decisions for themselves.

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The right kind of support
Good and bad decision making practices
Indirect support
Practical challenges to support

Having a good relationship with a psychiatrist, or other mental health practitioner was seen as very important to the people we spoke to. Continuity of care, in the sense of having a practitioner who was familiar with a person’s life story and who was prepared to take action when appropriate, was also important. You can read more about positive and negative experiences people had with mental health practitioners and GPs here: Experiences with mental health practitioners: Psychiatrists, counsellors and others, Experiences with GPs. Many people had suggestions about how mental health practitioners could improve the services they offered through a more person-centred approach and you can read more about that here: Advice to others: Health, mental health, and allied health practitioners.

Gurvinder contrasted his experience with a psychologist and psychiatrist while he was in hospital. Having the chance to explain exactly how his voices were affecting him was critical to good care.

The people we spoke to talked about the direct and indirect support they received, or felt was missing, when decisions were made about their treatment. Because people often experienced ups and downs in living with severe mental health problems, treatments often needed to be adjusted or changed and regularly monitored. Mostly it was mental health practitioners who made treatment decisions, and so feeling ‘supported’ in that context often meant participating in or feeling a valued part of that process.

Participation or ‘collaboration’ in decision-making around treatment decisions was something that many people felt very strongly about. However, this did not always mean having a direct input into or being subject to treatment decisions they fully agreed with at the time. For many people we spoke to, participation could simply mean feeling cared for and having their particular circumstances taken into account, or being given a treatment that they felt worked for them. Some people were very unwell when treatment decisions were made. As Chris said: ‘Rational thoughts were very hard’. Carlo described how he ‘wasn’t really able to express [himself] that much’. Some people said they were pleased that someone else had made the decision for them (see also Community Treatment Orders).

The right kind of support

The type of support that people felt they needed tended to vary according to what was going on for them at the time. As Brendan said, getting ‘the right kind of support’ was important as ‘that’s the only way that you can get there’. The kind of support people wanted varied. Some wanted to be involved in all treatment decisions and to have the freedom to change their medication dosage or stop it altogether (see Medication: Choice and non-compliance). Others wanted more support in the form of oversight of their treatment and care: someone who was keeping an eye on the various aspects of their care. Brendan said that it was important to have a follow-up after each appointment, because when he had to wait four months for an appointment with a psychiatrist, he felt he had fallen ‘through the cracks’.

Brendan didn’t feel he was well-managed. He tried to get admitted to hospital on several occasions and was turned away each time.

Although some people wanted control over their treatment from the start, others wanted different kinds of support depending on their particular needs at the time. When people were first unwell, some said they needed more support from their family and friends while others looked to mental health professionals to help and guide them. Many people described how they had felt overwhelmed as a consequence of navigating their diagnosis, dealing with unfamiliar terminology, and finding what sources of support were available.

Ann explained that by the time she got to hospital she was too unwell to ‘advocate effectively’ for herself.

People’s expectations of how much and what kind of input they should have could change over time. As they grew to know what worked for them and what didn’t, or found ways to manage their symptoms, some wanted more control over decision making. If they had a doctor who had been with them for a long time and with whom they had a good relationship, this could work well. Allen and Charlie said they self-managed their medication (stopping taking medication or changing the timing of medication) with their doctors’ permission. But sometimes people were not given that freedom. Susana said she felt like she was having her ‘word doubted’ when a doctor did not trust her to take her medication in tablet form and insisted on an injection. Despite feeling as though she was recovering at that point, Susana said this decision by her doctor took ‘control out of [her] life’.

Many people described how once they felt ‘recovered’ they became involved in voluntary work in mental health organisations, which gave them the opportunity to use their experience and expertise for peer support. Chris, who worked as a volunteer in a mental health organisation, defined ‘good care’ as a person being ‘able to decide what treatment they have, the treatment process, who is involved in the treatment, where the treatment takes place’, and whether or not there should be any follow-up.

Good and bad decision making practices

Feeling supported could mean anything from having a say in treatment decisions to being advised about a diagnosis or particular treatment at an appropriate time and place. Having the opportunity to share personal experiences and difficulties, and feeling listened to was another form of support that was appreciated by the people we spoke to. For some, having a good relationship with mental health practitioners and being able to speak frankly was more important than reaching a particular decision. People described being willing to accept a medical decision if they felt that their concerns were taken into account. Those concerns may have been about actual or perceived side effects of medication, about whether the medication was working, or how it affected their lives (for example by making them sleep too much, increasing hunger and weight gain, or reducing concentration). But if these concerns were ignored or treated as unavoidable, this could lead to non-compliance or cause resentment.

Helen was given diazepam for her stress and anxiety but it didn’t suit her busy family life.

Where people felt very knowledgeable about their own mental health, and about service and treatment options, it could be upsetting not to be given some control over the decision making process. The fear of not having control could be difficult to overcome where there was no central contact for decision making or where the main decision maker was someone with whom the person did not have a good relationship. Some people spoke of a ‘power imbalance’ between them and mental health practitioners or other mental health staff, or about feeling pre-judged and not treated as an equal.

Carlo described a good balance with his psychiatrist who was ‘kind of monitoring’ him.

Treatment decisions in hospital could feel like something that people had no control over. A few people described these decisions as being made by others rather than decided jointly. When Brendan was in hospital he said ‘they started to put me on medication’ but when he was back home and seeing a psychiatrist things seemed more collaborative: ‘we tried a couple of different medications’. In contrast, while Maria was in hospital she had a good case manager who took a ‘holistic approach’ and would see her but would also meet with her psychiatrist to ‘swap notes’.

Anna didn’t feel there was any supported decision making in hospital. In contrast, she described her relationship with her current psychiatrist as a ‘partnership’.

Most people recognised that decision making wasn’t an exact science and that it often meant trying out different things. Susana said she was forced to go to hospital after she refused treatment. She didn’t think it could have happened any other way because although the medication she refused wasn’t right for her, she said the doctors wouldn’t have known that: ‘it was just kind of like a process… kind of developing over time, seeing what’s the best’.

Indirect support

While some people felt they had not been given the opportunity for input into treatment decisions relating to their care by medical professionals, quite a few did speak about support they had received from elsewhere, such as family, social workers or peer support. Mental health organisations and support forums were also sources of help and information (see also Mental Health Community Support Services and Peer Support). Luana described how a staff member from a mental health organisation helped her to prepare to speak to the psychiatrist about coming off her Community Treatment Order. Ann heard about the possibility of drawing up an Advance Statement when she met someone at a support forum.

Some people had families who were very involved in their care and treatment decisions, but others said they did not have any supports (see Family and friends). Family could be important in following up on treatment decisions. As Brendan said, ‘Mum rang me up afterwards and she said to me, “Oh, you know, how’d it go?”‘. Gurvinder described how his parents had always been very involved in his treatment decisions and played a big part in his life.

Helen wished her family had been more direct in making her see a doctor sooner.

Practical challenges to support

Quite a few people spoke about long waiting times to see psychiatrists and psychologists and long gaps between appointments because mental health professionals were very busy. Brendan went to see his GP after he was turned away from hospital. He said his GP gave him the number for a psychiatrist but by the time he got an appointment he had been out of hospital and unsupported for four months. Brendan said getting the right support was ‘pot luck’. Others complained of psychiatrists taking little time, such as Carlo who felt that psychiatrists ‘rush, rush, rush’. Others recalled feeling as though psychiatrists had no real interest in them as a person during their sessions.

Simon had one psychiatrist who didn’t care enough to ‘dispute’ things with him.

When people were unwell, talking openly to a psychiatrist about their mental health could be frightening and people often reported they found it impossible at first. The ultimate power of the psychiatrist and uncertainty about what could happen made it difficult to establish trust. Carlo was afraid to say how he really felt. When a psychologist he was seeing asked him if he was suicidal, he said he didn’t reveal how bad he felt because he ‘didn’t trust anyone by that stage’ and was ‘quite fearful’.

Charlie said in the 1990s it was hard to ask to change medication. But she knows the system better now and finds mental health staff more approachable.

Being given medication without proper consultation could be very damaging. When a medication change was prescribed but had not been discussed, some people refused to take it. When Michelle was given medication in hospital, she described holding it under her tongue. Once the nurse had gone, she would decide whether to take it, split it in half or throw it down the sink. She said she once refused a medication given by the dispensary because it wasn’t her usual medication – it had been changed overnight but no one had told her: ‘it just had been done without my collaboration, my knowledge’. When medication decisions were forced on people this could undermine their self-esteem. Bernadette was given injections against her will and says this took away any opportunity for her to choose.

David felt he should have had some input into the decisions around his medication. Although it stopped him hurting himself, the side effects were bad and he came to resent his psychiatrist.