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

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).

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.

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).

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).

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).

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).

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).

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.

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).