Supporting treatment decisions

Victoria’s Mental Health Act 2014 recognises the role of carers in the ‘assessment, treatment and recovery of persons who have mental illness’ (section 10(h)). One of the main objectives of the Act is to enable and support persons diagnosed with mental illness ‘to make, or participate in, decisions about their assessment, treatment and recovery’ (section 10(d)).

Two important principles for guiding carers in supporting the treatment decisions of the people they care for are: 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)); and that those ‘receiving mental health services should be allowed to make decisions about their assessment, treatment and recovery that involve a degree of risk’ (section 11(1)(d)). Carers can support the person being cared for to make and participate in decisions about assessment, treatment and recovery through assisting him or her to make advance statements (sections 19 and 20) and appoint nominated persons (sections 23 and 24) (see Carers’ views on advance statements and nominated persons).

This Talking Point is about carers’ experiences of when and how they were able or unable to support family members diagnosed with ‘mental illness’ to make or participate in decisions about their own treatment.

Quick Links

Beginning of a family member’s ‘mental illness’
When a family member diagnosed with a ‘mental illness’ is ‘well’
When the person being cared for is becoming ‘unwell’
Challenges to supporting treatment decisions
Mental health legislation


Beginning of a family member’s ‘mental illness’

A few people interviewed said they had input into decisions made about their family members’ treatment when they first became ‘unwell’. Elena and Sue helped doctors to diagnose their sons by telling them about what Elena described as the ‘unusual behaviour’ their sons exhibited prior to their admission for treatment. Most people said they had been unable to support treatment decisions when their family members first became ‘unwell’ due to lack of communication on the part of mental health practitioners, practitioners’ attitudes of ‘blame’ towards families, and issues around privacy and confidentiality. When her stepdaughter became ‘unwell’, Marta felt the treating psychiatrist ‘blamed’ her for the ‘illness’. Julie received ‘very little feedback’ from the psychiatrist who first treated her daughter for depression.

Rowan prompted his wife to tell the treating psychiatrist about the voices she had been hearing, which assisted her diagnosis.

View profile

George said that mental health practitioners did not consult him about the medications they gave his son which ‘subdued’ him so much he was ‘like a zombie’.

View profile

When a family member diagnosed with a ‘mental illness’ is ‘well’

Carers supported the person being cared for’s treatment decisions when he or she was ‘well’ by organising appointments with mental health professionals, participating with family members and practitioners in consultations, and monitoring side-effects of medication. George and Sue observed the person being cared for was ‘overmedicated’ or ‘anxious’, and suggested he or she get their medication reassessed. This led to an adjustment to the medications that improved the person cared for’s quality of life.

When Kay’s husband expressed concern that their son was ‘overmedicated’, their son’s new psychiatrist organised for him to be taken off the medication he had been on ‘for years and years’.

View profile

Supporting her son when he was ‘well’ to participate in treatment decisions, for Bronwyn, involved being his ‘advocate’.

View profile

Many carers took the initiative to tell practitioners how their family members were doing in their day-to-day lives. In some instances, practitioners encouraged carers to participate in conversations about the person being cared for’s treatment.

Elizabeth recalled how one of her son’s psychiatrists made her feel ‘part’ of her son’s ‘treatment plan’, which ’empowered’ her.

View profile

Some carers supported family members’ treatment decisions by suggesting they change practitioners or access new ones. Mike felt his wife was getting ‘too comfortable’ with her psychiatrist and organised for her to start seeing a psychologist for ‘balance’, which her psychiatrist supported. By contrast, Katherine supported her son to let go of his long-term psychiatrist and ‘transition’ to seeing a new psychiatrist.

Julie provided her daughter with options that enabled her to decide for herself whether to consult a different practitioner.

View profile

When the person being cared for is becoming ‘unwell’

Carers distinguished between different phases of their family members becoming ‘unwell’: an early phase, a later phase/’relapsing’, and an acute phase/’crisis’. Alexia explained: ‘Because it doesn’t happen overnight. Hitting rock bottom, it doesn’t happen overnight. There are stages that the consumer will go through’. Early on, there was often what Katherine described as ‘a window of opportunity’ to support the person cared for to seek preventive treatment. Elizabeth acted as a sounding-board for her son about early ‘symptoms’ which indicated he was becoming ‘unwell’ and Katherine talked about how her knowledge of ‘signs’ supported her son to ‘nip’ an episode ‘in the bud’.

When Kate recognised the ‘signs’ her brother was becoming ‘more manic’, she persuaded him to speak to someone at his mental health centre.

View profile

In the later phase, carers advised their loves ones to seek professional help, co-ordinated mental health services to come out to treat them, and kept an eye on their whereabouts. People said they rang Crisis Assessment and Treatment (CAT) teams, emergency services and police when their family members were in danger of either getting hurt or arrested and put in prison (see also Carers’ experiences of police, crisis intervention and coercion).

Sometimes Katherine needed to make decisions when her son was becoming ‘unwell’ – such as ringing for a Crisis Assessment and Treatment team – that he was ‘unhappy’ with.

View profile

When her partner expressed ‘suicidal thoughts’, Tracey said she supported her by taking her medication ‘out of her control’.

View profile

In a ‘crisis’ situation, carers mediated practitioners’ treatment decisions to family members and spoke on their behalf when they found it difficult to speak for themselves regarding treatment or when they were hospitalised as compulsory patients (see also Carers and Community Treatment Orders).

Lisa described how she ‘rallied hard’ when her brother was ‘really unwell’ to have his status as a compulsory patient removed.

View profile

Challenges to supporting treatment decisions

All carers interviewed talked about their experiences of not being able to support the person cared for’s treatment decisions when he or she was ‘well’ and ‘unwell’. A key factor people identified was the perceived tendency of many practitioners to overlook carers’ perspectives in decision making about the person cared for’s treatment. Most carers felt unable to support treatment decisions when practitioners had not listened to their perspectives on how their family members were doing and when services had, in Alexia’s words, ‘not taken seriously’ carers’ views on signs the person being cared for was becoming ‘unwell’.

Dianne said she often felt her son’s psychiatrist did ‘not believe’ her when she told him her son was having ‘an episode’.

View profile

The point when the person being cared for left hospital was when most carers said they had been least able to support the person cared for. Many commented that the person cared for was often discharged while he or she was, in Lisa’s words, ‘still unwell’, into situations with little access to services and without secure housing or assistance to re-connect with family or friends.

Alexia described her ‘terrifying’ experience of caring for her son for nine days when he was ‘relapsing’ and did not want to seek treatment.

View profile

Elizabeth described how her son was still ‘way, way unwell’ when he was discharged into the regional town where they lived, which lacked services.

View profile

Mental health legislation

Some carers reflected on current mental health legislation, specifically, what they described as the law’s exclusive emphasis on the rights of people diagnosed with mental illness. They felt this made it difficult for carers to ask for help to support the person being cared for and, in some instances, for carers to ask for help to protect themselves from the person cared for whose behaviour could be challenging when ‘unwell’.

Christene said she thought mental health laws did not make adequate provision for carers to support the person being cared for to access treatment when he or she was ‘not well’.

View profile

Marta was sceptical about Victoria’s new Mental Health Act’s emphasis on the right of people diagnosed with mental illness to make decisions about treatment that involved a degree of risk.

View profile

For many, an obstacle to the ability of carers to support treatment decisions was the perceived tendency of some practitioners to interpret privacy laws in ways that carers felt did not support people diagnosed with ‘mental illness’ to maintain relationships with their families. For several years, Elena was not in a position to support her son after clinicians supported his decision to cease contact with his family. Saskia described how her sister chose not to include her in treatment decisions after a social worker told her sister: ‘Oh you don’t need to have family members involved in this process. It is your decision and your decision alone’.

Although Dianne said she understood privacy legislation* protected people’s rights to privacy, she thought its impact on family relationships could go ‘a bit too far’.

View profile