Mental Health Service Users’ Perspectives on Psychiatric Advance Directives: A Systematic Review

Psychiatric advance directives (PADs) are documents that enable users of mental health services to express their preferences for treatment should a future mental health crisis occur. PADs can be particularly useful for people with mental disorders such as psychotic and bipolar disorders that may affect competence to consent.

PADs can be created independently by service users or with help from others. Facilitated PADs are created by service users in consultation with at least one other person (e.g., family members, friends, mental health professionals, peers, lawyers, or others). PADs that are created together with members of a service user’s mental health team or are facilitated by external mental health professionals are sometimes referred to as joint crisis plans (JCPs) (1). Other types of PADs have been developed: crisis cards are short documents that contain basic crisis management information (e.g., contact persons) but no detailed treatment preferences, and Ulysses agreements (also referred to as self-binding directives) contain advance instructions to override service users’ anticipated treatment refusals during mental health crises (2).

PAD legislation has been developed over the past decades in countries such as Australia, Austria, Belgium, Canada, Germany, India, Ireland, New Zealand, Scotland, Switzerland, and the Netherlands, as well as in several U.S. states (3). Very few Asian countries have PAD legislation (4), and data about any laws pertaining to PADs in the rest of the world are mostly unavailable.

The legal impact of PADs varies considerably across jurisdictions. In several U.S. states, instructions in PADs can be overridden under specific circumstances, for example, when professionals judge that complying with the instructions is not feasible or when they conflict with practice standards, need for emergency treatment, or applicable law (2, 5). In other jurisdictions, such as in Germany, clinicians are legally required to follow advance refusal of medical treatment recorded in a PAD, and these preferences cannot be overridden (3, 6).

Empirical evidence suggests that PAD completion rates remain very low, even in countries with PAD legislation (7, 8). Multiple barriers to PAD completion indicate that the legal opportunity to create a PAD does not guarantee the real opportunity to do so (5). The views of service users on the ethical and clinical benefits and risks of PADs feature prominently in ethical arguments about the legal regulation and clinical implementation of PADs (3), appropriately reflecting the idea that the voice of the people affected should vitally inform policy making. The academic literature about service users’ views on benefits and risks of PADs is extensive and multifaceted, yet the large number of studies has posed challenges for getting a balanced view on these different perspectives. This lack of an adequate overview may cause blind spots and tunnel vision or may encourage cherry-picking, all of which seriously complicate evidence-based policy making.

The aim of this systematic review was to gather and systematize the perspectives of service users on PADs reported in the scientific literature. The results of the review may inform policy making and clinical implementation of PADs around the globe.

Methods

A systematic review was conducted in accordance with PRISMA guidelines (9). A protocol was developed according to PRISMA guidelines but was not registered.

Search Strategy

Search terms were adapted from a previous systematic review (10) and included common variations of the terms “advance directive” and “psychiatry.” The search strategy was adapted to the requirements of each database. The CINAHL, Cochrane, EMBASE, PsycINFO, Medline, PubMed, SCOPUS, and Web of Science databases were searched. All accessible years and publication types were included. The search was conducted on October 15, 2020, and updated on July 2, 2021. Bibliographies of included articles were screened for additional references, but this screening yielded no additional results. (The full strategy used for searching PubMed is shown in an online supplement to this review.)

Eligibility Criteria

Articles reporting original quantitative or qualitative empirical data on mental health service users’ views on PADs were included. Exclusion criteria were the following: the study included only people with dementia, mild cognitive impairment, or older adults without mental disorder; the study focused on advance directives in the context of somatic health conditions or end-of-life decision making; the article did not analyze data on service users separately from data of other stakeholder groups; or the article was not available in English, German, or Dutch. Data on the content of PADs were analyzed in a companion systematic review (11).

Study Selection

We removed duplicate references by using EndNote X9 and manual searches. All article titles, abstracts, and full texts were screened by two authors independently, following the predefined inclusion and exclusion criteria (E.B. and M.S. for titles and abstracts and E.B. and A.-S.G. for full texts). An overall concordance of 93% on inclusion or exclusion was achieved. Disagreements during the screening were discussed between the two authors for titles and abstracts and among three authors (E.B., A.-S.G., M.S.) for full-text articles until consensus was reached.

Data Extraction and Quality Assessment

Data on study characteristics, including country, methods, sample characteristics, PAD type, and information about whether having a PAD was an inclusion criterion for the study were extracted and tabulated by A.-S.G., E.B., and M.S.

The Mixed Methods Appraisal Tool (12) was used to assess the quality of the included studies. The tool provides five quality criteria for each qualitative, quantitative, and mixed-methods study designs. A score of 1 (criterion was fulfilled), 0 (not fulfilled), or 0.5 (partially fulfilled) was assigned for each criterion, resulting in a quality score between 0 and 5 for each category that was applicable to a single study. Eight studies were rated by both A.-S.G. and E.B., and discrepancies were discussed to ensure adequate interrater reliability. All remaining studies were then rated by either A.-S.G. or E.B. Studies with a score of ≤2 for the qualitative or quantitative categories were given less weight in the interpretation of the data. No studies were excluded on the basis of quality because our aim was to systematize all available data on service user perspectives on PADs.

Data Synthesis

We conducted a narrative synthesis informed by the Economic and Social Research Council Methods Programme’s “Guidance on the Conduct of Narrative Synthesis in Systematic Reviews” (13). An initial list of thematic categories was established by three authors (E.B., A.-S.G., M.S.) after a first reading of the studies included. The initial coding system was also informed by our previous knowledge of the PAD literature. Relevant data were analyzed thematically and coded with MAXQDA 2020 software (version 20.4.1), beginning with the initial categories and refining the code system inductively through emerging codes. Six articles were coded independently by both E.B. and A.-S.G. Differences in coding were compared and discussed among E.B., A.-S.G., and M.S. to establish consensus for further analysis. All further articles were analyzed by either E.B., A.-S.G., or M.S. Changes in the coding system were discussed among these three authors. The final categories were tabulated and integrated into a narrative synthesis. Because of the heterogeneity of study characteristics such as PAD types, setting, and legislative framework and variation in questionnaire items, meta-analysis of quantitative data was not deemed appropriate.

Results

Study Characteristics

The initial systematic search yielded 4,047 articles, 49 of which were eligible for inclusion. Four articles from the updated search were included, resulting in a total of 53 articles (see PRISMA diagram in the online supplement). Study characteristics are listed in the online supplement. The included studies were published between 1999 and 2021 and conducted in 12 countries, primarily the United States (N=18) (8, 14–30), the United Kingdom (N=15) (1, 31–44), New Zealand (N=3) (45–47), Australia (N=3) (48–50), and India (N=3) (51–53). The remaining studies were conducted in Germany (54), Switzerland (55, 56), the Netherlands (57, 58), Ireland (59, 60), Canada (61, 62), Colombia (63), and Singapore (64). One study was published in German (54) and analyzed by two German native speakers (E.B., A.-S.G.); all other studies were published in English. Twenty of the studies were qualitative, 20 were quantitative, and 13 were mixed-methods studies. The most common inclusion criteria were a diagnosis of schizophrenia or related disorders, bipolar disorder, depression, or “serious mental illness.” The sample sizes relevant to our research question ranged between three and 1,011 service users. Having a PAD was not an inclusion criterion in most studies, but PADs were created during 25 studies. The PAD subtypes comprised facilitated PADs, including JCPs, crisis cards, and Ulysses agreements. (The table in the online supplement lists the results of the quality assessment using the Mixed Methods Appraisal Tool.) Studies with a quality score ≤2 were given less weight in the interpretation of the data.

General Preferences

Forty-three studies reported service users’ general preferences regarding PADs (Table 1). Interest in PADs among service users was high overall. A total of 18 of 23 studies investigating interest in PADs reported that they were overall endorsed by >60% of users. Ten of these studies reported interest or approval rates of >80%. In four of the 23 studies, 40%–60% of the users were interested in PADs. The lowest approval of PADs was recorded in a qualitative study from India (52), with only one of 39 service users explicitly liking the idea of a PAD. Eight of 10 studies reporting on satisfaction with PADs found that most users were satisfied with their PADs or would recommend PAD creation to others. In one study (37), 82% (N=41 of 50) of users stated that they would recommend PADs to others 15 months after PAD completion. The full references for this and all further domains are listed in Table 1.

Service users across multiple studies found it helpful that members of their treatment team were involved in facilitating their PAD. Family or friends and peer support workers were also mentioned as preferred facilitators. Users deemed it important that the facilitator be a trusted person; one user stated, “I think the bottom line is people you trust. That could be a family member or a friend, someone you can talk it through with, and sometimes that can be a particular staff member of a service” (46). Some users highlighted the benefits of involving an external facilitator, because this involvement improved communication with professionals and increased users’ control over PAD creation (33, 34).

Users generally endorsed legally binding PADs and agreed that the instructions in their PADs should not be overridden by mental health professionals during mental health crises. Users also mainly preferred PADs that could be changed only when users have competence to consent, for example, because they regarded their decisions during crises as “unwise” (36); few users favored PADs that could be revoked at any time.

Regarding criteria for PAD application, participants in several studies stated that the judgment of trusted professionals or family members should be followed (23, 58). Some described situations in which the PAD should be activated (58). Users often preferred that their PADs be stored with members of the treatment team (32, 42), their general practitioner, or, less often, with family or friends (32). Users generally agreed to having their PADs stored in electronically accessible databases (42, 46), and some noted that PADs should be evaluated and updated regularly (46, 59).

Benefits

Thirty-eight studies mentioned PADs’ benefits reported by service users (Table 2). Five subdomains emerged: personal benefits, treatment-related benefits, prevention of psychiatry-related harm, prevention of harm due to lack of treatment, and social benefits.

Personal benefits.

The main benefit reported across qualitative studies was that creating a PAD resulted in an increased sense of autonomy, control, or empowerment. Users described PADs as giving them “a voice” (61) or “[giving] back the power to me” (36). The PADs were regarded as providing increased control over treatment decisions: “I’ll have some input into what goes on in my treatment, and in my medication. That’s something I’ve never had before” (19). Some users had experienced feelings of disempowerment during past interactions with mental health care and hoped that a PAD could ensure that their wishes be honored in the future (14, 33). PADs were perceived as tools to ensure a more active role in one’s treatment (50). A large majority of users in six quantitative surveys agreed that PADs would give them more control over their own lives or treatment choices (20, 23, 27, 29) and that advance directives increase service users’ sense of responsibility, empowerment, autonomy, and self-management skills (45, 47). In two studies, most users agreed that increased involvement in decisions about their mental health (38) or increased control over treatment (59) was a central motivation for creating a PAD. Two longitudinal studies reported a significant increase in measures of empowerment (17) or autonomy (62) 1–3 months after PAD creation, and one study (18) found no change in perceived self-determination 12 months after PAD completion. Another study (37) reported that 73% (N=32 of 44) of service users perceived a change in control over their mental health problem and a change in involvement in their care immediately after PAD creation, which, however, decreased to 56% (N=28 of 50) 15 months after PAD completion.

Service users in seven qualitative studies (Table 2) reported that having a PAD would provide an increased sense of safety and “peace of mind” (62). The PADs were perceived as supportive and reassuring tools during crises (56).

Four qualitative studies (Table 2) showed that PADs were regarded as tools to ensure that service users’ rights were upheld. In one quantitative survey (45), 78% (N=18 of 23) of users agreed that PADs “are necessary because mental health consumers are at risk of their rights being breached.”

Most users in several quantitative surveys agreed that PADs would help them “stay well” or would be helpful in their recovery. This theme also emerged in qualitative interviews (46, 52). In one study, 68% (N=30 of 44) of users agreed that their feelings about themselves and their situation improved immediately after creating a PAD, although this reported improvement decreased to 48% (N=24 of 50) at a 15-month follow-up (37).

Qualitative statements showed that the process of creating a PAD was perceived as helpful to increase knowledge about one’s own illness, for example, by understanding behavioral patterns (56) or recognizing signs of illness (40). Users also found it beneficial to draw on their experiences from past crises while creating their PADs. This approach had the advantage of reframing one’s psychiatric history as a valuable resource for future treatment decisions (14, 46).

Treatment-related benefits.

Service users in qualitative studies mentioned the potential of PADs to enhance communication with professionals during crises (Table 2). Users acknowledged that communication can be challenging when they were unwell (48), and PADs were regarded as helpful tools to facilitate communication with professionals about their treatment wishes (59).

Some users were dissatisfied with therapeutic relationships in routine care, stating that they did not feel respected or listened to in such settings (33). Users’ increased involvement in treatment planning through PAD creation led them to feel more respected by providers, which improved the therapeutic relationship (33, 56). In one quantitative survey (59), 50% (N=53 of 106) of users believed that developing a PAD would improve the therapeutic relationship, and 59% (N=62 of 105) saw an improvement of the therapeutic relationship as a motivating factor for making a PAD. Users rated the quality of the therapeutic relationship more positively after the completion of facilitated PADs (26) and JCPs (1).

However, one study (17) did not find any significant improvement of the therapeutic relationship after PAD completion. In one longitudinal study (37), only 24% (N=12 of 50) of users reported a change in their relationship with the mental health team 1 year after completion of a JCP, compared with 46% (N=20 of 44) at immediate follow-up.

Qualitative studies showed that PADs were regarded as tools to improve treatment outcomes (49) and guide care by providing evidence of “what has or has not been effective for that person in the past” (23). In one quantitative study (38), 60% (N=53 of 88) of users with preexisting PADs reported that their PAD had improved their experience of treatment in a crisis. In another quantitative study (26), users who completed a facilitated PAD were significantly more likely to state that their need for treatment was met.

Users identified PADs as tools to improve continuity of care by providing instructions for changing clinicians after a change in care (48). Clinicians who engaged in the joint development of a PAD were regarded as making a commitment to consistency (33). Users in several studies saw PADs as a motivator for increased treatment adherence (43, 52). However, one study did not find any significant improvement in treatment motivation after PAD creation (17). In another study (37), 57% (N=25 of 44) of users reported a positive change in treatment motivation immediately after creating a PAD, which decreased to 28% (N=14 of 50) after 15 months.

Prevention of psychiatry-related harm to service users.

Two qualitative studies (19, 54) reported that users regarded PADs as beneficial because they could help avoid involuntary hospitalization or could lead to earlier discharge. A large majority of users in quantitative studies agreed that PADs are useful to avoid hospitalization (27, 29). The PADs were also perceived as helpful to avoid unwanted medication (61, 62) or electroconvulsive therapy (31) and to reduce trauma due to involuntary treatment or adverse effects of certain medications (44).

Prevention of harm due to lack of treatment.

Conversely, service users also viewed PADs as helpful to ensure that necessary treatment was obtained (36, 40). PADs could help users to recognize signs of illness and situations in which admission to inpatient care is necessary (40). Users believed that PADs facilitate early intervention (43, 58), and early intervention in an ambulatory setting was reported as a particular advantage of Ulysses agreements (58).

PADs were regarded as helpful to reduce harmful behavior during mental health crises and to decrease the risk for suicide (36) or harm to relationships (38). Users also viewed PADs as useful to prevent irrational decisions during episodes (56). One user stated, “I don’t want anyone to listen to me when I am unwell; I explicitly would want them to take my advance plans as my true wishes, and [I] would be mortified if they were overruled” (36).

Social benefits.

PADs were regarded as increasing the involvement of family members in users’ care (Table 2). They were perceived as helping users both communicate their wishes to family members (59) and be more honest with them (44). More than 80% of service users in two quantitative studies agreed that PADs could help family members understand users’ needs better (29) and improve communication between users and their families (20).

Some users hoped that a PAD could alleviate the burden on substitute decision makers, which was also regarded as an important reason for making a PAD by 74% (N=690 of 932) of service users in one quantitative study (38). Additionally, users in one qualitative study stated that PADs could increase trust in one’s substitute decision maker (62).

Barriers and Challenges

We identified four categories of barriers and challenges regarding PADs reported by service users (Table 3) in 41 studies. Difficulties with drafting a PAD and problems regarding PAD storage and application were the most prominent domains, followed by reasons not to make a PAD and negative consequences of having a PAD.

Difficulties with PAD creation.

Many users were unfamiliar with PADs or did not understand them fully. However, two studies (35, 53) showed that most users could understand the instrument after being provided with information.

In two quantitative studies (30, 38), 47%–49% of users agreed that completing a PAD would be difficult. However, most users who created PADs with help from facilitators stated that the creation process had been easy (15, 52) and reported only a few difficulties (17, 49). One participant stated, “But without somebody to help [service users] with [a PAD], I think somebody might be a little bit intimidated by the process” (23).

Participants in several studies (35, 56) reported that they would not know what to write in their PADs. In two quantitative studies (27, 30), 47%–48% of users agreed that it would be hard to get support in PAD creation. A total of 64% (N=599 of 932) of users in one study disagreed with the statement that “mental health workers have more than enough time” to help with PAD creation (38). Users in one qualitative study (39) reported inadequate follow-up after professionals had initiated PAD creation. Some users stated that they did not have anyone they trusted as a reason for not wanting to create a PAD (29), and not having a trusted person to support them with PAD creation was perceived as a barrier by 23% (N=25 of 110) of users in one quantitative study (59).

Some users in qualitative studies stated that creating a PAD would be too time-consuming (31, 49). On the other hand, findings from quantitative studies revealed that only a minority of users agreed that drawing up a PAD would take up too much time (30, 59).

Qualitative statements showed that some users distrusted their own judgment or doubted their ability to make decisions about their own care (34, 36), and some users identified the risk that PADs might be created when users lack competence to consent (36, 56). Some users thought it would be upsetting to think about negative experiences when making a PAD. However, in two quantitative studies (38, 59) only 19%–21% of users regarded distress due to thinking about past crises as a barrier to creating a PAD. Some users found it difficult to nominate a substitute decision maker in their PADs (62), which was regarded as a barrier by 24%–39% of users in three quantitative studies (27, 30, 59).

Problems regarding application and storage.

Users in both quantitative and qualitative studies stated that they did not believe the instructions in their PADs would be followed in practice, and instances where an existing PAD had not been followed were reported in nine studies (15, 19, 34, 38–40, 43, 45, 54). The belief that a PAD would not affect treatment was given as a reason why users did not want to create a PAD in two studies (24, 29). Users reported that clinicians who did not follow instructions in the PAD could damage the therapeutic relationship, leading to distrust (48).

Users believed that their PADs would not be followed because either professionals do not endorse the instrument as such (1, 20), or they are not aware of the user’s PAD (40). Participants also expressed the worry that their PAD would not be accessible during a crisis, because they would not be able to tell anyone about it during the crisis or because of storage problems (19). Some had already experienced that their PAD had not been accessible after admission to inpatient care (54).

Lack of legal force was reported as a barrier in eight qualitative studies (Table 3), and 25% (N=233 of 932) of users in one quantitative study (38) agreed that they did not see the point of PADs because they can be overruled.

Some service users felt that PADs might contain inappropriate instructions, with 26% (N=8 of 31) of users in one study agreeing that some users “will make unreasonable requests” (20) in their PADs. This was believed to potentially backfire and cause resentment among clinicians (14). One user stated that if requests were unreasonable, mental health professionals should override their preferences: “You have to give a reason for whatever you’re asking, and if it’s not a reasonable reason, then, I dunno, the doctor just uses their discretion” (48).

A lack of flexibility was seen as a barrier to successful PAD implementation; for instance, some service users stated that context should always be considered before applying a PAD (42). Some feared that a PAD could trigger an intervention either too late or too early (58). Some users worried that the PAD might become out of date and not reflect the user’s current wishes (36). In one quantitative study, 32% (N=10 of 31) agreed that users “will not take responsibility for updating their psychiatric advance directive over time” (20).

Reasons not to make a PAD.

Lack of trust in the mental health system or in specific clinicians was stated as a reason for not completing a PAD by users in several studies (Table 3). Conversely, some users also regarded PADs as unnecessary because they trusted their treatment team. Only a few users in the studies reported that they did not find PADs useful or necessary, partly because they already had sufficient arrangements for crises (24, 27). Not expecting mental health crises in the future was stated as a reason by some users for not making a PAD (48).

Some users described a general aversion to legal documents as a reason against drawing up a PAD. In two quantitative studies, 36% (N=40 of 110) reported a lack of understanding of the legal implications (59), and 19% (N=7 of 37) stated not trusting legal documents (30). Few participants expressed worries about undue influence by relatives or clinicians. In one quantitative study (20), 42% (N=13 of 31) of service users agreed that it would “be difficult for mental health professionals to help people fill out a psychiatric advance directive in an unbiased manner.”

Few users stated the inability to foresee their preferences during future crises as a reason against making a PAD, or they found it difficult to anticipate a situation where a PAD would be needed (55). In one quantitative study (59), 27% (N=30 of 110) of users regarded the risk of a change of mind as a barrier to making a PAD. A small minority of users in only one qualitative study (36) said that a change of mind during a crisis was valid and that they would, therefore, not want a PAD to override current wishes.

Negative consequences of having a PAD.

Some users raised concerns about risks to privacy and confidentiality. In one quantitative study (20), 48% (N=15 of 31) agreed that storing PADs “in a central location within a community poses a significant threat to confidentiality.” Others feared that having a PAD would label them as having a mental disorder, which could lead to increased stigma. Few users noted that PADs might lead to not receiving necessary treatment (55), and others worried about a possible increase in coercive measures, which was reported only in qualitative studies focusing on Ulysses agreements (36, 58, 63).

Facilitators

Twenty-three studies reported on facilitators of PAD completion (Table 4). Results from both qualitative and quantitative studies indicated that a large majority of service users were interested in receiving support with PAD completion and found support by clinicians or other facilitators helpful. Most service users in two quantitative studies (17, 18) noted that they could not have completed a PAD without help. Two studies (17, 28) reported a reduction in barriers after the completion of a facilitated PAD.

Several users reported being motivated to create a PAD after being approached by a member of their treatment team (14, 24). Trust in the medical system or in specific providers was a relevant precondition for making a PAD for some users (58). Having a social network or friends who supported the process was also regarded as helpful (14). Some users stated that previous negative treatment experiences led them to completing a PAD (23, 49). Several qualitative statements suggested that PADs should be created shortly after a mental health crisis (44) and that a user-friendly template or guideline would be helpful in the process (46).

Discussion

Implications for Clinical Practice, Research, and Policy

The findings of this review have important implications for clinical practice, research, and policy making regarding PADs. Regarding clinical practice, our findings underscore that users of mental health services are highly interested in PADs and that they see several potential benefits related to PAD creation and application. Many users state that PADs can increase feelings of autonomy, empowerment, and control. This observation does not imply, however, that service users wish to use PADs to make treatment decisions without the involvement of mental health professionals. Instead, users report that the process of jointly creating a PAD itself can be beneficial. Rather than a tool that is used to simply list treatment preferences, PADs can be understood as a complex intervention (65) that can positively influence users’ relationships with both professionals and family members.

Trust is an important factor in relation to PADs: service users find it important to receive support in creating PADs from trusted persons, and the process of PAD creation itself can increase trust in professionals. Lack of trust in the mental health system or in individual clinicians can also be a barrier to PAD completion. Users with strong trust in the mental health system may be the easiest to approach regarding the creation of a PAD but the least likely to believe that a PAD is necessary (64). It is, therefore, important to build the trust that is necessary for creating a PAD, which can be increased further through PAD creation and implementation. The involvement of peer support workers or family members in PAD creation can improve trust and communication by supporting users in expressing their treatment preferences. Compliance with PAD preferences during future admissions is important because trust forged in jointly creating PADs can be diminished if professionals subsequently override PADs.

The main barriers to PAD implementation reported by service users were related to practical concerns about PAD creation and application rather than fundamental concerns about the PAD concept. Interestingly, concerns about undue influence or an increase of coercion through the involvement of clinicians in creating PADs were raised very rarely by users. We found that users approve of the involvement of mental health professionals in PAD creation and strongly endorse support in creating a PAD, which emerged as the most important facilitator. Many of the barriers reported by users can be overcome by involving mental health professionals. Support by professionals in PAD creation can ensure that the content of a PAD is clear and specific and that instructions given in a PAD can be followed in practice. Professionals can assess whether users have competence to consent at the time of PAD completion and inform them of the consequences of their treatment choices and the alternatives available. Support by professionals can also guarantee that clinicians are aware of the existence of a PAD, that it is available to them during crises, and that its content is updated regularly.

Users appear to benefit most when PADs are created jointly with professionals, because many of the advantages the service users identified, such as the improvement of the therapeutic relationship, cannot be realized if PADs are created independently by users. The findings of this review thus give strong reasons for mental health professionals to support PAD creation in practice. Contrary to the concerns of some mental health professionals that PADs may contain refusals of all treatment (46, 66), service users regard PADs as a tool that can increase their involvement in their own care. A systematic review showed that users generally include clear and clinically relevant treatment preferences in their PADs (11). Although PADs can be used to prevent hospitalization or unwanted treatment, users also find them helpful to ensure early treatment and prevent harm during crises. Psychiatrists are significantly more accepting of JCPs than of PADs that are created without consulting a mental health professional (7, 65, 67), which provides a further reason for involving clinicians in PAD creation.

Regarding implications for future research, this review demonstrates that the perceived benefits of PADs in Western high-income countries are well described in qualitative research. More qualitative research of service users’ perspectives on the benefits and challenges of PADs in non-Western and low-resource settings is needed. Benefits such as increased autonomy, empowerment or control, improvement of the therapeutic relationship, increase in well-being, and the likelihood of continuing treatment have been assessed as outcomes of PAD utilization in randomized controlled trials (RCTs) (1, 17, 18, 37). Moreover, a systematic review and meta-analysis revealed that PADs significantly reduce compulsory admissions (68), another benefit of PADs often reported by users. However, the number of RCTs of PADs conducted to date is low, and these trials have yielded mixed results. Findings may be inconclusive because a PAD is a complex intervention, and its efficacy must be assessed in natural settings, which makes it difficult to strictly adhere to research protocols. Outcomes that have not yet been assessed in RCTs and could be of interest for future studies include the potential of PADs to make early intervention possible, increase the involvement of family members in care, and provide relief to proxy decision makers.

Even though the benefits of PADs are well known, implementation of PADs in clinical practice is still limited. In addition to legislative changes, several possible clinical strategies may promote implementation. Training workshops that introduce PADs could raise awareness of the instrument among mental health professionals (5, 69). External facilitation—for example, by peer support workers—may help increase trust in mental health services, because users have reported improved communication with professionals and better control over PAD creation when external facilitators were involved (33). Studies show that clinicians may be reluctant to spend substantial amounts of time on PAD creation together with service users (5), so adequate financial compensation for professionals and other facilitators may be necessary, for example, through reimbursement via health insurance. Further studies on PAD implementation strategies are needed to investigate which of these incentives successfully increase PAD uptake.

Regarding policy making, the findings of this review indicate that service users prefer legally binding PADs that cannot be overridden by professionals. This observation suggests that legislation allowing professionals to override instructions in PADs, as is the case in many U.S. states with PAD legislation, may be counterproductive. The objective of a PAD is to plan treatment for future mental health crises, and the possibility to override advance decisions made by service users who are competent to consent defeats this purpose (5). Lack of legal force of PADs may be a significant barrier to their successful implementation and could keep users from completing them. Additionally, PADs are likely to be overridden in international settings that do not have any PAD legislation, including most Asian countries (4). Potential legislative changes can be informed by laws in jurisdictions where PADs are legally binding and where treatment preferences contained in valid PADs cannot be overridden.

Most service users reported that they prefer PADs that can be revoked or changed only when users are competent to consent. The findings of our review indicate that many users believe that their behavior during mental health crises can be harmful and that professionals should not follow service users’ decisions made during a crisis. According to the interpretation of the United Nations Convention on the Rights of Persons With Disabilities (CRPD) by the Committee on the Rights of Persons With Disabilities, the CRPD entails a wholesale rejection of substitute decision making and does not allow instructions in a PAD to override currently expressed preferences (3, 70). The findings of our review count against this view and suggest that users would support an interpretation of the CRPD that allows PAD instructions to override the current preferences of users who lack competence to consent (3, 71).

Limitations

The heterogeneity of methods used in the studies included in this review limited the comparability of the available data. Comparability was limited further by the heterogeneity of the types of PADs and subgroups of service users examined in the studies, as well as by differences in PAD legislation among the 12 countries in which the studies were conducted. Some of the benefits and barriers reported by users may be specific to PADs created in the context of research studies, which were often facilitated by researchers or professionals, and may not be fully representative of the benefits and barriers in psychiatric practice. The included studies may have represented the opinions of users who were disproportionately interested in PADs or supportive of PADs, because they might have been more willing to participate in studies on this instrument. The generalizability of our findings may have been limited by the fact that the reviewed studies were carried out mostly in high-income Western countries with well-established mental health laws and systems.

Conclusions

The findings of this review show that service users are highly interested in PADs and regard them as tools to increase their autonomy and involvement in their own care. Users were found to approve of the involvement of mental health professionals in PAD creation and to strongly endorse support in creating PADs, which users view as the most important facilitator of PAD creation. Users prefer legally binding PADs that can be revoked only when users are competent to consent. The main barriers users reported were related to practical concerns about PAD creation and application rather than fundamental concerns about the concept of a PAD.