To Make Another Goal or to Dream a Different Dream—A Mixed Method Study of Experiences of People Using Mental Health Advance Care Planning

ABSTRACT

Advance statements are instruments under the Mental Health Act (2014) (Vic) (the Act) in Victoria, Australia that support advance care planning, should a person become a compulsory patient under the Act. Advance care planning supports consumers to have their values and preferences known to the service and other decision makers. Uptake of advance statements in mental health has been poor, and minimal literature is available that explores direct experiences of these instruments by consumers. Feminist Standpoint theory was used in this study as it centres the experience of the marginalised person within the study. This study comprised four in‐depth interviews and a survey with 59 responses that explored consumers' direct experiences of using advance statements in Victoria. Results are consistent with past research identifying that many mental health advance statements were consenting documents, although some issues remained with locating the advance statement and identifying the most beneficial staff members to notify. Analysis of the interviews identified four main themes in people's experiences: not being read, working/not working, the use of advocacy and adjusting expectations. Consumers suggested how advance statements could be improved. Specific examples of advocacy by nurses were identified, and as the largest body of mental health workers, nurses have a key role in supporting consumers throughout their journey. Nurses are best placed to enact supported decision making, a key factor in advance care planning. With greater understanding of advance statements, and better resourcing of supported decision‐making mechanisms, there is potential for advance statements to contribute to an improved experience for consumers in mental health services.

1. Introduction

Advance care planning is accepted and understood in many areas of health care (Johnson et al. 2016), although uptake of advance care directives remains relatively low across all health facilities (Detering et al. 2021). Advance statements, a specific mental health document that is provided for in the Victorian Mental Health Act (2014) (the Act), had an uptake in 2020–21 of 3.18% (Department of Health (Vic) 2021). With substituted decision‐making common in mental health care, treatment and care decisions being made by a psychiatrist and often without consent of the consumer, advance care planning can increase the use of supported decision‐making.

Supported decision making is a process whereby supports are made available to individuals, so they can make choices about their own lives, a focus of the Convention on Rights of Persons with Disabilities (2006) (United Nations 2006). Supports may be: people to talk through the decisions; information about the consequences of the decision; or other tools that may explore alternatives or enable the persons values and preferences to be known. Supported decision making is important for upholding Human Rights, as it promotes self‐determination and autonomy (Carter and Chesterman 2009).

Mental health care advance care planning is impacted by factors such as legislation allowing for substitute decision making by a psychiatrist and the confusion created by the multiple terms used to describe different tools that may support advance care planning (Edan et al. 2021). In this paper we use advance care planning as a general term that includes all actions that support advance care planning in mental health care, and advance statements to refer specifically to the instrument available under the Act.

This paper presents the findings of my PhD study (V.E.). As a mental health consumer academic, I have used mental health services and identify as such in my work. I utilise the consumer perspective, a discipline that recognises the unique contribution that people who identify as consumers, survivors, or ex‐patients of psychiatry can bring to knowledge and academia. B.H. is the principal supervisor and mental health nurse academic, L.B. is the supervisor and social work academic.

Diverse terms are used to identify a person who experiences psychological distress and or psychiatric diagnosis. Descriptors include: service user, consumers, patients and ex‐patients, survivors or people with lived experience of trauma, neurodiversity, or mental health challenges (Daya et al. 2020; VMIAC 2019). These terms hold differing meanings for people and their use can be influenced by social and/or political purposes. While acknowledging this complexity, this paper will use ‘consumer’ as this is most used in mental health services in Australia.

Prior to the commencement of the Mental Health Act (2014), Victoria Australia had seen a notably high use of compulsory (involuntary) treatment for people with a mental illness (AIHW 2022). During the review period for a new act, advocates argued for tighter controls on compulsory treatment and better alignment with human rights, as emphasised in the CRPD (2006), which came into force in Australia in 2008, and the Victorian Charter of Rights and Responsibilities Act (2006).

Section 5 of MHA (2014) sets out the criteria for compulsory treatment and section 53 empowers the Mental Health Tribunal to decide whether a treatment order should be made or upheld. A report from the Mental Health Tribunal for the years leading up to this study indicated an increase in compulsory treatment orders, with a total of 6794 orders being made (MHT Annual Report 2021).

One of the mechanisms introduced in MHA (2014) to support consumer decision making are advance statements (AS). An AS is a ‘values and preference’ document. Section 19 provides this definition:

An advance statement is a document that sets out a person's preferences in relation to treatment, in the event that the person becomes a patient.

While there was no government‐approved template for advance statements, an organisation that is designated under MHA (2014) to provide non‐legal advocacy, Independent Mental Health Advocacy (IMHA) provides a template on their website (IMHA 2021). Some examples of items included in an AS are types of medications or particular services a consumer may prefer; or medications or other treatments a consumer does not want. When an AS has been written, the authorised psychiatrist must have regard to the person's views and preferences and explain why they are making a different decision.

Research into mental health advance care planning has predominantly occurred in the United States and the United Kingdom. Existing research has focussed on the attitudes of mental health staff (James et al. 2022) towards advance care planning or on clinical outcomes such as admissions to inpatient services (Campbell and Kisely 2009). In contrast, papers such as Kim et al. (2007) and Elbogen et al. (2007) provide clear examples of how these types of documents can assist with consumers' sense of autonomy and self‐determination at times when these can be at risk. While some literature is available about consumers' experiences of writing documents that may be considered advance planning (Maylea et al. 2018), there is little literature available about consumers' direct experience of ASs once a person is subject to a compulsory treatment order under the relevant law.

This study aims to address this gap in understanding of consumer experiences of ASs and their utility, when the person is subject to a compulsory treatment order under the MHA (2014).

2. Methods

With the aim of exploring consumers' direct experience of ASs, a sequential mixed methods descriptive study, consisting of an online survey and in‐depth interviews, was conducted in Victoria during 2020–21. Ethics approval was granted by the University of Melbourne, no 1954152.1. The survey was conducted to enable a preliminary description of consumers' experiences of preparing and using ASs and shape qualitative interviews, both through recruitment and informing the interview content. Sixteen survey questions were developed and piloted in collaboration with consumer workers known to the author (V.E.).

2.1. Methodology

In undertaking this study, a feminist standpoint perspective was adopted. Standpoint theory arose out of the early thinking of feminists such as Nancy Hartstock, Sandra Harding and Patricia Hill Collins in the 1970–80's (van der Tuin 2016). Houle (2009) describes feminist standpoint theory as a political epistemology, in that it aims to describe the truth of the situation and also to provide a way of enabling advocacy towards an improvement in the situation. In explaining standpoint theory, Bowell (2018) identifies three assertions:

1. Knowledge is socially situated.

2. Marginalised groups are socially situated in ways that make it more possible for them to be aware of things and ask questions than it is for the non‐marginalised.

3. Research, particularly that focused on power relations, should begin with the lives of the marginalised.

Keeping these assertions in mind, the purpose of identifying a standpoint from which to conduct research is to expose the truth of the situation as experienced by those people in the situation.

2.2. Design

Semi‐structured interviews were conducted to explore the experience of consumers using ASs, in the context of a compulsory inpatient admission. Three overarching questions were developed for the interviews, with two sub‐questions each:

1. Can you tell me a little about why you decided to write an advance statement?

   1. What, if any, sort of assistance did you seek in writing the advance statement?
   2. How did you let the mental health service know that you had an advance statement?
2. Looking back on your admission into hospital, what impact do you think having the advance statement had?

   1. Who asked you if you had an advance statement?
   2. How was the advance statement used or spoken about during your admission?
3. What happened after your admission to hospital in relation to the advance statement?

   1. What type of changes, if any, were made to the advance statement?

The survey was distributed and completed online. Due to COVID 19 limitations enforced in Victoria through the research period, all interviews were conducted online, using the video platform Zoom. Interviews were audio recorded, and the audio was then transcribed by V.E. and deidentified for analysis.

2.3. Data Collection

Recruitment was conducted via peak advocacy bodies, such as VMIAC and IMHA, peer support networks and social media. A plain English introduction and statement about the positionality of the researcher was circulated through VMIAC, the peak mental health consumer organisation in Victoria, through colleagues in academia and grassroots organisations on social media. A link to the survey was included in the recruitment information. For interviews, contact information of the researchers was provided in both the recruitment flyer and on the survey. The Patient Information and Consent Form was provided electronically and returned by email or mail, prior to interviews. No specific demographic data were obtained from the interview participants, although it was apparent that three participants used metropolitan services and one used a rural service.

2.4. Analysis

A descriptive analysis of the survey data from respondents who had completed an advance statement was conducted, utilising SPSS and reported in this paper. Analysis of interviews was conducted by V.E. with support from B.H. (Braun and Clarke 2013). The transcripts were read several times by V.E., and B.H. read a selection. Coding discussions occurred during supervision sessions with V.E., B.H. and L.B., encouraging reflection and collaborative interpretation as themes emerged. V.E.'s expertise and personal experience played a key role in guiding and shaping ongoing reflexive responses, in line with Feminist Standpoint Theory. Coding was applied by V.E. in an iterative process which ensured inclusion of new codes that emerged. The codes were then organised into themes.

During analysis, theoretical consideration of participants' knowledge, perspective and perception of power was used as a reference for amplifying participants' standpoint. In accordance with standpoint theory, what the participants said about their own agency, their opportunity to express preferences and to have these ASs upheld in the context of experiences of involuntary treatment was taken as truth for them, accepting that this may identify meaning making about experiences that would not otherwise be obvious to the observer.

3. Results

3.1. Survey

Survey responses were gained from 86 people, with 59 people having an AS (Table 1). The survey responses from 27 people who did not have an AS are not included in this paper and will be reported elsewhere. All respondents completed their AS in the 3 years prior to the survey, 2 years following their introduction in MHA (2014).

TABLE 1.

Results of survey conducted online in 2020 with 86 total respondents. Respondents with an advance statement n = 59 (all responses provided in n).

When did you complete your first advance statement?
2015	9
2016	12
2017	11
2018	11
2019	12
2020	2
Do not remember	2
The law requires someone to witness your advance statement, who witnessed yours?
Justice of the Peace	9
Mental Health Clinician	17
Other Health Professional (Doctor or Nurse)	15
Pharmacist	7
Police Officer	11
Who did you give a copy of your advance statement to? (please tick all that apply)
Case manager	32
Nurse	35
Psychiatrist	31
Social worker	30
Occupational therapist	34
Psychologist	35
Peer worker	26
Other	2
What was the broad contents of your advance statement (tick all that apply)
I spoke mostly about refusing specific treatments	11
I spoke mostly about consenting to treatments	24
I have a mixture of both refusing and consenting to treatment	11
I have personal statements in my advance statement	15
About how many things did you ask for in your advance statement
Less than 5	24
Between 5 and 10	20
Over 10	13
DNA	2
Do you have a person who supports you? (tick all that apply)
Nominated person	22
Family member	27
Carer	21
Supportive friend	27
I have nobody to support me	2
After writing your advance statement, have you had an admission to hospital?
No	2
Yes	57
Was your admission a compulsory admission?
No	25
Yes	31
Not stated	3
Was the staff at the hospital able to locate your advance statement?
No	22
Yes	34
Not stated	3
In hospital, who spoke to you about your advance statement (tick all that apply)
Nurse	27
Psychiatrist	20
Social worker	22
Occupational therapist	21
Psychologist	24
Peer support worker	11
Advocate (IMHA)	17
Did staff follow what was in your advance statement?
In part	1
No	4
Yes	53
DNA	1
If no, was an explanation given to you as to why?
No	3
Yes	1
Were you satisfied with the response you were given?
Satisfied	0
Dissatisfied	2
Very dissatisfied	2
Who was the most helpful to you during your admission in relation to your advance statement?
Nurse	17
Psychiatrist	20
Social worker	18
Occupational therapist	22
Psychologist	24
Peer support worker	16
Advocate (IMHA)	15
If you have a support person, to the best of your knowledge, did they support your advance statement?
No	17
Yes	30
Not stated	3

Over a third of ASs were in the majority ‘consenting’ (agreeing to specific treatment) documents with 18.6% being ‘refusing’ (refusing specific treatments) documents. Generally, it was identified that copies of ASs were given to support people from their lives, as well as multiple staff of mental health services.

Of 57 respondents who had an admission to an inpatient unit, 55% of the admissions were compulsory and 45% voluntary; 39% of these respondents reported that there was difficulty locating the document. When the documents were located, staff most likely to talk with respondents about the AS were nurses (44.6%). Just over a third (35.7%) of respondents stated that the psychiatrist spoke with them about their AS. The overwhelming majority of respondents had the items in their AS followed (91%), while 7% stated it was not followed and 2% stated that it was followed in part.

The results of this survey sometimes contrasted with consumer knowledge in this field. VMIAC (2018) reported that many consumers state that ASs are not followed. These differences in experiences prompted the development of interview questions, principally exploring with the interview participants their experiences of AS during their inpatient admission.

3.2. Interviews

In total, four participants were interviewed, and they provided further explanation of many of the points raised in the survey findings. Four main themes arose from the interviews:

1. Not being read

2. working/not working

3. the use of advocacy

4. adjusting expectations

3.3. Not Being Read

All the participants noted that until they told the treating team that they had an AS, no staff mentioned or spoke about it to them.

I asked them had they read the AS, and she wasn't aware that there was one. But when I got on to the FOI department, try and get a copy of my records. She said that there is one in the file. (IP#2)

When the existence of an AS was raised with staff, for two of the participants no further conversations occurred about the contents of the AS or what impact it had on any decisions that the staff made.

3.4. Working/Not Working

Interview participants had significantly divergent experiences with ASs during their inpatient admissions. Interviewee 1 shared the value of the AS and how it aided in supporting their decisions about important treatment matters, such as not having ECT and being transferred to a private hospital.

… Enormous. Well, I am about three weeks into the admission. My treating psychiatrist came up to me and said we're considering ECT. And I basically said No way. It's on my advance statement and he said yes and it was dropped. (IP#1)

Another participant reflected the AS was ‘not worth the paper it was written on’ (IP#2). This participant also described how the AS was initially not able to be found and that when it was located, it was not discussed with them.

In contrast, for a third participant the value of the AS experience was mixed, over time and admissions. Having had several admissions where the AS was completely ignored, in the last admission this person experienced a different outcome, when a nurse became aware of the statement and worked with her on an agreeable outcome.

She was amazing, she came to me and asked, (…), she asked me if I still agreed with the statement, did I still (…), want what was in it. This was the first time anyone had ever asked me this. (IP#3)

Another participant also stated that their experience changed over time:

I got advice about what to put in my advance statement, and how to write it, so I think that the way I wrote it meant I got what I wanted. (IP#4)

While two participants described AS working well for them, without any specific advocacy required, this was not the experience of all. For two participants, advocacy was a key feature of the usefulness of the AS.

3.5. The Use of Advocacy

The two experiences of advocacy in this study were quite different. While one participant had to engage with funded professional advocacy services, another found in a nurse a clinical advocate who supported her preferences.

One experience of professional advocacy brought an understanding for the participant that only advocacy supports outside of the health system would support the consumer in their decision making. This participant had found that relying on hospital staff to uphold an AS was ineffective without some form of independent oversight. They remained very angry about what had happened, with a sense that even with an advocate, their situation had not appreciably changed.

And the sooner I accept that and tell them what they want to hear and tick all the boxes … that's the plan of action, because that's all you can do. (IP#2)

Furthermore, this participant held a strong view that the AS was not valued by the service, specifically the consultant psychiatrist.

… she didn't even refer to it. …. She didn't refer to it, whether it was there or not. Yeah. And not only that, she upped my medication to the point where she had to notify Vic roads that I couldn't drive for a minimum of two weeks. (IP#2)

This change in medication was not aligned with this participant's AS and resulted in a significant outcome for them t, stating that their regular psychiatrist ‘put me back on the normal dosage’ as soon as they were discharged.

The experience of another participant was also difficult across several admissions, sharing that in two admissions since writing the AS, staff ‘didn't speak to me about it, except to say they couldn't do what I asked’. This participant expressed some disbelief that an AS would be of any value until their most recent admission. In this experience a nurse, new to the participant, located the AS and approached them about it.

I was so surprised, nobody ever came to me about it before, they always denied it or just flat out said they couldn't do anything in it. (IP#3)

Prior to the next clinical meeting, this nurse took time to talk with the participant about what was in the AS and why. The nurse discussed with the participant what might be possible and the best way to express it for the psychiatrist.

She was so helpful, …. She really helped me understand what the doctor might say and what I could do to change that. We spoke about what I really wanted and what I could do without, what I might be able to get and what he definitely wouldn't agree with. (IP#3)

With this discussion, the participant expressed that they felt that the nurse was going to ‘advocate hard’ for them. The participant also stated that the nurse helped ‘me with what to say’ when they met with the doctor and agreed to discuss the AS with the nominated person reporting back to the participant and their family after each discussion.

3.6. Adjusting Expectations

Participants did not change their expectations of the usefulness or otherwise of their AS during admission, primarily due to the minimal engagement of the clinical team with participants' AS. For one participant, none of the items in their AS were addressed. This participant expressed disdain for the process and for the document and considered that the only positive outcomes were due to the work of the advocate they had from IMHA.

In contrast, a third participant found an advocate in the nurse, someone who was able to negotiate on her behalf. The nurse was able to explain to the participant what was possible and negotiate with the service and the psychiatrist some compromises.

So yes, I didn't want to have Seroquel at all, I tried and tried to get the doctor to understand but he really just ignored me. Its funny how when [the nurse] spoke to him she was able to get the doctor to agree to a lower dose. (IP#3)

However, all indicated that the experiences they had influenced the value they placed in ASs. When ASs were engaged with by team members within the service, either through discussions with the participant or changes to treatment decisions, this contributed to confidence in ASs as a useful tool.

3.7. Participants' Views on Improving Advance Statements

For these participants, having hands‐on experiences with ASs culminated in clear views about how they could be improved. Given the very different nature of the participants' experiences with ASs, they had diverse suggestions regarding improving uptake and utilisation of ASs. The suggestions identified consisted of three main themes:

1. Improvement in staff understanding

2. Advocacy

3. Education of staff (psychiatrists) in human rights

3.7.1. Improvement in Staff Understanding

All participants noted a lack of understanding of ASs by staff, with one participant also noting that consumers often do not see the value in them.

Yeah, I think there's lots to do, so many other people I know don't even know about advance statements and those that do don't think they are worth the trouble. (IP#3)

Another participant expressed strong opinions about the lack of understanding of staff, about ASs.

People think that because it has ‘advance’ in the title it means it has to be completed before the admission; it doesn't. I was shocked at how little staff knew or at least how much they misunderstood. (IP#4)

Based in experience as a consumer worker as well as their personal experiences, one participant thought the biggest potential improvement in use of ASs was in supporting case managers to assist consumers to write ASs:

case managers should … let clients know that advance statements exist. Case managers should also be prepared to… talk clients through the advance statement. (IP#1)

With knowledge of how services work, this participant also identified how ASs could be given more visibility in routine care pathways and documents, in order to incorporate any existing AS into treatment decision making.

[think about] admission pathways. For example, …, some point in the flowchart you should have, ‘does patient have advanced statements?’ ‘Yes’, look at it; ‘No’, continue with treatment. (IP#1)

Participants also reflected on the focus of staff members and their different roles, with one participant focusing on case managers (community care) assisting in writing ASs and others identifying the key role nurses can play, when a person is admitted to a unit.

Yeah, ok, so I would like more nurses to see that they have something to offer us, they can get into places we can't. (IP#3)

While two participants identified the role of specific staff to support writing and then upholding ASs, all participants recognised that the majority of staff could do more, including peer support workers.

All staff should be responsible for stuff like this, the nurses, doctors, case managers, and even the peer support workers. (IP#2)

Overall, participants recognised the important role that clinical staff have in the use of ASs. The poor understanding of ASs amongst staff appeared to be common and impacted on consumers' experiences when accessing services. Addressing this is important, both in terms of when ASs can be written and how to best utilise them in clinical settings.

3.7.2. Advocacy

There was a strong focus on advocacy from three participants. Two participants focused on independent advocacy, while a third focused on the specific advocacy that a nurse can achieve.

That nurse was so wonderful, if only more could be like her, if I had her every time I went into hospital I think things would be very different. (IP#3)

This participant also agreed that independent advocacy had an important role to play.

… really important that nurses understand because they are there, with you, all the time, but sometimes I think it would be difficult, like could they lose their job? …. So I think the answer is that there needs to be more advocates, yeah, … inside and outside the hospital. (IP#3)

Other participants drew attention to the 2014 Act and its role in guiding decisions. These participants emphasised the role that independent advocates and lawyers could have.

Lawyers, we need more lawyers, I don't understand why person charged with a crime can get access to a free lawyer but we can't. (IP#4)

3.7.3. Education of Staff (Especially Psychiatrists) in Human Rights

The final comment by one participant concerned improvement in doctors' knowledge of rights and skills collaborating with people.

The doctors just don't get it, they think they know everything, but really they don't know anything about human rights. Doctors should get real training in rights and learn about collaboration. Just because I'm on an order doesn't mean I can't make decisions, and we can't talk about it. (IP#3)

Another participant responded to this question by stating that there was little that they thought could happen under the current law.

I only managed to get what I wanted through being really careful about what I said in the advance statement; at the moment I don't think there is anything that can be done. We need to have the Act changed so that advance statements can't be ignored by the doctors. (IP#4)

4. Discussion

This study explored consumers' experiences of ASs under the 2014 Act and specifically the experience of their use when they had a compulsory admission to a mental health service. While experiences were varied, common themes arose in relation to the contents of the AS, the accessibility of the document, the availability of support people and advocates, and how these influenced their use.

4.1. Consent to or Declining of Treatments

While this study did not explore in detail the contents of people's ASs, what was shared about the contents and the interaction with clinicians is consistent with other research findings that indicate that the contents of advance planning tools are directly related to people's experiences of treatment (Gaillard et al. 2023). Further, studies show that these tools more often contain instructions regarding preferences (such as consenting to specific treatments) rather than refusing treatment (Jankovic et al. 2010). One study found only 1 in 221 participants with a psychotic disorder stating that they would prefer not to take medications at all (Farrelly et al. 2014). Similarly, our study also found that only 18.1% of survey respondents stated that they had declining instructions in their AS.

4.2. Access to Advance Statements

Findings from the survey indicated a significant issue regarding the ability of staff to access ASs. It is difficult to determine the real effect that ASs may have on treatment decisions when services have trouble locating them. The MHA (2014) did not make any recommendations regarding the storage or accessibility of ASs, leaving this task to individual mental health services to decide. While recommendations to the Victorian government have been made by advocacy groups (Daya and Edan 2021) for the central storage and reporting on the use of ASs, the mechanisms for this are not currently known.

4.3. Importance and Role of Support Persons

A further issue that arose in the study is that of relational enabling (or not) of ASs. The experiences of participants reflect that supported decision making is actively relational. While this is described as a ‘long term relationship of trust between one or more individuals’ (Carter and Chesterman 2009, 10), there is the opportunity for some staff to develop a shorter‐term relationship that can powerfully support decision making and the utilisation of ASs.

The literature describing ASs in mental health does not foreground the role of support people in determining whether ASs are upheld or not. However, interviewees and survey respondents both indicated the importance of support people, either in writing their AS or while they were in hospital and needed advocacy. One paper described some of the complexities for nurses regarding being an advocate in mental health (Jugessur and Iles 2009). They identify some of the barriers: while nurses regulatory codes of practice promote nurse's role as an advocate, there is inadequate protection for nurses advocating a consumer preference at odds with colleagues within their nursing practice. There also seems to be confusion about the appropriate philosophical approach, that is one of ‘best interests’ (Gerber 2018) or human rights (Nitzky 2020). Given this, there is good reason for nurses and all staff to undertake advocacy thoughtfully, using supported decision‐making principles. The findings here suggest that AS may drive improved practice in encouraging more discussion about views and preferences and acting as a tool that supports advocacy attempts.

During the interviews, participants provided suggestions regarding how to improve advance statements and their uptake. While some suggestions, such as strengthening the legal status of the documents, require governments to change legislation, some actions could be undertaken in clinical settings with very small changes to practice. Suggestions such as ensuring ASs are included in clinical handovers or providing support to consumers to write ASs would be simple to implement.

The professional bodies that regulate education and professional development could also take a proactive role in including information about human rights, advance care planning and ASs in practice application in training requirements. This lack of knowledge has been identified in other studies (Maylea et al. 2021) and appears to be a significant factor in the experiences of consumers.

Strengths and Limitations: While it is important to recognise that both the survey and interview sample sizes are relatively small, this study offers a novel perspective on understanding the experiences of individuals with AS during a compulsory inpatient admission. By applying concepts from feminist standpoint theory, the research intentionally focuses on centring the consumers' own lived experiences, which enriches the overall insights and contributes to a deeper, more authentic understanding of their perspectives. The sample size of four interviews is modest; however, as standpoint theory suggests, these first person lived experience accounts provide a rich and important perspective on ASs. The authors do not claim that this is representative of the very diverse experiences consumers may have. This approach not only highlights the uniqueness of their experiences but also challenges traditional frameworks by prioritising voices that are often overlooked.

The survey responses from 27 people who did not have an AS are not included in this paper and will be reported elsewhere.

5. Conclusion

The participants in this study shared their personal experience of ASs as well as ideas about making ASs and systems more responsive to consumer needs. The interviews suggest that a broad range of experiences exists with ASs, from being an effective tool that can inform decisions with little resistance, through to a view that ASs were not working at all, whether that be for lack of effective operational systems or active resistance.

ASs have the potential to support a shift from ‘best interests’ to supported decision making approaches in mental health service delivery, but the potency of ASs depends on a range of factors. Factors include how much support is offered to consumers when developing their AS, whether they are made available to treating teams and genuinely given regard to, the degree to which they must be followed, and the level of accountability expected when preferences in an AS are overridden.

6. Relevance for Clinical Practice

Mental health nurses have an opportunity to engage with ASs in unique and powerful ways. This research demonstrates that supporting the increased use of ASs could substantially improve the utilisation of supported decision making, increase the efficacy of nurses' advocacy (Gerber 2018) and for consumer views and preferences to be heard and respected. This study also endorses consumer suggestions that the impact of ASs could be strengthened by ASs being routinely included in clinical handovers and by nurses providing support to consumers to write ASs.

Conflicts of Interest

The authors declare no conflicts of interest.

Edan, V. , Brophy L., and Hamilton B.. 2025. “To Make Another Goal or to Dream a Different Dream—A Mixed Method Study of Experiences of People Using Mental Health Advance Care Planning.” International Journal of Mental Health Nursing 34, no. 4: e70098. 10.1111/inm.70098.

Data Availability Statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.