Advance statements and nominated persons
About the survey
Advance statements and nominated persons were introduced in Victoria in the Mental Health Act 2014, in Part (3): Protection of rights.
In the four years since the introduction of the new Act, the uptake of advance statements and nominated persons has been very low, sitting at about 2% of all people admitted to mental health hospitals.
This survey was conducted in June 2018 and was commissioned by the Department of Health and Human Services, to help better understand why so few consumers have been utilising these protections. The survey was conducted by VMIAC, Victoria’s peak body for mental health consumers.
Fifty people completed the survey, and people were generous in sharing a wide range of experiences, opinions and ideas.
We’ve submitted the report to DHHS, and we’re delighted to share the final survey report with you.
What are advance statements?
Advance statements are a form of supported decision making where people can document their will and preferences in advance of treatment.
- Hospitals and the Mental Health Tribunal are required to read and consider advance statements at times where they may not feel able to gain informed consent from the consumer. They must have a good reason for not following the preferences expressed in an advance statement.
- Advance ‘statements’ are not as strong as advance ‘directives’. Statements have to be considered but they don’t have to be followed (whereas directives must be followed).
What are nominated persons?
Nominated persons are a form of supported decision making that may assist consumers to uphold their human rights.
- Consumers select their own nominated person, and ensure the person understands their treatment and care preferences
- The service has to provide information to the nominated person, consult with them about treatment, and provide them access to meet with the consumer.
- A nominated person can support consumers to understand, make and communicate their own decisions, if required.
- A nominated person can speak on the consumer’s behalf, if required, to communicate their treatment and care preferences.
What did people say?
People had a lot to say in the survey. Key findings were:
Opportunities to improve information promotion
Mental health services, in particular, have significant opportunities for improvement. More than 60% of consumers agreed it was difficult to find information, and only 8-15% of consumers reported that mental health services routinely provide information about advance statements and nominated persons.
‘My case manager didn’t know what they were’
‘Services need to regularly remind consumers of this option, not just once.’
‘Too many bits all over the place and not easy if you are not a technology person.’
Varying experience of setting them up
Most people found it easy to set up an advance statement or nominated person, but almost one-third found it really challenging. This included practical issues, like getting them witnessed, and the need for emotional support to complete the process.
‘No one could give me consistent information about what to include and just said, “include anything you don’t want in hospital”’
‘It took a lot of work and thinking.’
‘I asked my case manager to sign it and she wouldn’t because she didn’t know what it was for’
‘It’s confronting to think about’
Poor experiences of trying to use them
Respondents mostly reported poor experiences of trying to use advance statements or nominated persons while in hospital. A high proportion of people said that the hospital did not uphold requests in their advance statements (83%), or uphold requests made by their nominated person (67%).
‘They couldn’t find it, although I gave a copy to my case manager and to the nurse in ED.’
‘Some clinicians actually rolled their eyes when I asked them to read my advance directive.’
However, there were also some positive experiences reported:
‘I have not been admitted to hospital as part of advance statement I spent some time in a PARC to stop an admission. Which has worked on 2 occasions.’
Reasons for not having one
People gave a range of reasons for not having an advance statement or nominated person. The most common reasons included:
- I don’t think it will be helpful
- I’m planning to get one in the future
- I don’t think I need one
‘There is no compulsion for psychiatrists or services to honour them. Tribunal can overrule them also. Waste of time till the Act gives them ‘teeth’’
‘I’m in the process but finding it difficult to get my health practitioners – GP and psych to do it with me as they don’t have a lot of experience with them. Need someone else who knows more about them to help me with it. I want to know as many options and alternatives as possible.’
‘My understanding is that although NP is there to present the person’s wishes, they may also be asked their opinion and I do not want that. I want it to be my opinion as per my AS.’
Theme: Poor clinical culture and attitudes
Fifty-four percent of people commented on poor attitudes of clinicians or service culture, across multiple question categories. Poor attitudes and culture were attributed as barriers to people setting up advance statements and nominated persons, and in them being successfully used in practice.
‘The doctors and hospitals, they don’t care what you want they just do whatever they like.’
‘Not all staff read them or take them seriously, so don’t hope for respectful care.’
‘I think most people think there’s no point in having an advance statement if it’s just going to be ignored.’
Theme: The role of carers and family in relation to nominated persons
Many comments were made by consumers about carers and family throughout the survey in different question categories. Key findings included:
- Carers/family members were not the only group preferred as a nominated person
- Consumers spoke about widely varying relationships and trust with carers/family members. Some find them extremely supportive in representing the consumer’s will and preferences, while others spoke about conflicting views on treatment. Some consumers spoke about violence or abuse within a family and how this impacts considerations for a nominated person.
- The way that services treat consumers and carers/family members can create issues of trust in ongoing relationships
After reviewing survey results, VMIAC has made the following recommendations to the Department of Health and Human Services. We have flagged that the first two recommendations are critical: there is no value in promoting mechanisms that will fail once people try to use them.
1. Clinical culture & attitudes
Improve mental health clinician attitudes and service culture regarding advance statements, nominated persons and human rights.
2. Clinical standards & accountability
Improve standards of practice and accountability:
- Establish a process for consumers to self-report whether the service is compliant with their advance statement or nominated person
- Ensure mandated information distribution
- Provide better safeguards at the Mental Health Tribunal
- Establish state-wide systems for lodging and retrieving advance statement and nominated person records
3. Consumer-developed resources
Fund the development of a comprehensive suite of consumer-developed information and resources, for a range of mediums (e.g., online, posters, booklets, templates, examples & stories, online learning modules). Provide materials in standard English, easy English, and translations. Ensure comprehensive distribution.
4. Support staff
Provide staffing resources to support people to complete advance statements and nominated persons, including administrative support, exploring options, and emotional support. These staff should be accessible to all. Involve services beyond the clinical sector—options include the Independent Mental Health Advocacy service, community services, or VMIAC. Consider ways to involve the consumer workforce.
5. Legislative change
VMIAC strongly recommends legislative change during the 2019 Mental Health Act review: including:
- Changing from advance statements to directives
- Allowing the nomination of excluded people
- Strengthening safeguards for human rights
Thinking about setting up your own advance statement or nominated person?
Even though people raised many issues, around 60% of people strongly agreed that they would recommend them to other consumers.
‘There’s no guarantee that it will be followed, but there’s many reasons to have one. It makes sure my preferences are considered, and will let staff know how to support me if I’m admitted or in a crisis. I won’t be able to remember all my strategies in these situations so an Advance Statement could be a good reminder.’
‘To some extent it’s made me feel less powerless. However, not all staff read them or take them seriously, so don’t hope for respectful care.’
‘I struggle to understand why they are not promoted more highly, I feel that having all my supports working together will ensure that my recovery will be highly improved.’