Following our research questions and interview guide, the main themes were benefits and risks of SBDs, barriers and facilitators related to SBD completion and activation, and the effects of the new law on the implementation of SBDs. For each of these themes, various subthemes emerged from the data. These are summarized in Table 2 and described below.
Benefits of SBDs
Participants reported various benefits of SBDs (Table 2). Most service users and professionals identified increased service user autonomy as the main benefit of having an SBD. They described SBDs as an instrument giving service users a greater say on and a more central role in the planning of their own care, because service users’ preferences are taken as a starting point for discussions with the clinical team and are then formalized into a legally binding document. The following quote illustrates the impact of SBDs on service user autonomy:
“I believe it is part of preserving my autonomy. The moment I’m going to be assessed and everything – I am stripped of everything, my autonomy is gone… basic rights, everything is gone […]. And by deciding those things now, I still have a bit of autonomy in my own hands, my wishes – for example regarding my admission: if I am admitted, it will not be at institution X because I know too many people there.” (Participant 3 – service user).
Several service users and professionals indicated that SBDs contribute to an improved relationship between service users and professionals, not only because SBDs empower service users and make their relationship with clinicians more equal, but also because they provide a concrete occasion for joint discussions about service users’ preferences:
“And this is a way in which you achieve equality and start a conversation about what is important, what is necessary. What do you want? What do you like? I think that’s worth a lot.” (Participant 5 – service user).
“I think the whole procedure has been a huge boost for her and that she feels being taken very seriously and that she was given a lot of space to indicate her preferences. So it has been very good for her personally. It has also been very positive for her treatment relationship with us.” (Participant 12 – psychiatrist).
Many service users and professionals considered SBDs as beneficial in enabling intervention when the first signs of a mental health crisis become apparent. Early intervention can involve admission to a mental health hospital or intensified community support. Participants indicated that early intervention helps to prevent harm to service users and their social environment. They explained that SBDs can enable early intervention by authorizing compulsory care before the point is reached at which service users pose a risk of harm to self or others:
“Now it’s much easier than if they have to wait until you are a danger to yourself or to the social environment; because I just don’t reach that level, so they wouldn’t be able to admit me.” (Participant 4 – service user).
“Other options [than compulsory care] don’t work for him and he cannot be corrected in time before the danger becomes too real. So [in his SBD] he actually described a situation in which he must be treated involuntarily according to criteria that will be met before it has really reached the point of no return, in the hope that he will actually profit from the arrangement. That would not be possible without a self-binding directive, because he would not yet meet the criterion of serious disadvantage [central criterion for compulsory care under Dutch law] to be able to really proceed [with arranging compulsory care].” (Participant 11 – psychiatrist).
Interestingly, while the function of SBDs is to enable service users to give advance consent to compulsory care, participants indicated that SBDs can also have the effect of reducing compulsory care. While this may seem somewhat paradoxical at first sight, one participant explained that SBDs can prevent compulsory care by reminding service users of their autonomous preferences and convincing them to start or continue treatment on a voluntary basis:
“The mere fact that they had a self-binding directive was enough. It brings them enough peace of mind to just continue treatment on an outpatient basis.” (Participant 21 – policy expert).
Participants thought that, in virtue of enabling early intervention in mental health crises, SBDs can have the benefit of shortening the duration of both compulsory care and recovery:
“Before [legal provisions for SBDs existed], you first had to give someone the chance to agree with medication, then they could appeal against medication, a procedural thing. She had indicated [in her SBD] that she would like medication as soon as possible and that worked. In her case, we saw that the longer she waited with medication, the longer her recovery took, which could really extend the duration of her stay with a factor two, as did the time she needed to recover.” (Participant 18 – psychologist).
SBDs were also seen as rendering the experience of compulsory care less stigmatizing, traumatic, and stressful for service users because service users are actively involved in planning crisis care and are given assurance that their preferences will be respected:
“So I think that if you can say, ‘I have drawn up a plan in which I indicate what should be done and what I prefer etc.’, it is less stigmatizing than when you have to say, ‘I have a compulsory measure that was imposed on me by the care institution due to my limited insight.’ So I really liked it.…I felt less small.” (Participant 5 – service user).
Professionals considered it a benefit of SBDs that they provide guidance for administering compulsory care:
“[Her SBD describes that] if she develops manic symptoms, reduces or stops her medication, an immediate admission and immediate start with compulsory medication will follow. It also describes which medication. It’s a very concrete plan describing which interventions to use.” (Participant 18 – psychologist).
Risks of SBDs
Participants also reported several risks of SBDs (Table 2). Infeasibility of SBDs emerged as the most prominent risk. Participants were concerned that decompensation may occur too quickly to be able to activate the SBD, as illustrated by this quote from a professional:
“There is a risk that it [decompensation] sometimes goes so fast that the self-binding directive is a mere sham. Eh, so then you have made a nice plan, but then you can sometimes move from zero to one hundred instead of ten, twenty, thirty, forty …then the serious disadvantage is already so substantial that….that you have to take recourse to a crisis measure after all.” (Participant 4 – psychiatrist).
A further problem regarding feasibility mentioned by both service users and professionals is that the preferences of service users cannot be always followed, for example because the mental health crisis takes a course that was not anticipated or because of a scarcity of resources (e.g., the institution of choice has no beds available, or the preferred medication is unavailable):
“So that was what we were concerned about at the time. Yes, of course she can create an ideal situation where everything will indeed go the way she wants. But you will see that the psychosis will look just a bit different or…quetiapine is not available at that time for some reason, and you still want to start olanzapine, and then everything will expire, and you just have to apply for a court order, and I think that’s a shame. […] It seemed as if a kind of sham wish list could be drafted by the patient which in the end, if it really came down to it, would actually be wiped off the table right away.” (Participant 12 – psychiatrist).
Participants also pointed to potential difficulties in decision-making around SBD activation. Both service users and professionals indicated that in practice it can be hard to judge whether the described circumstances of SBD activation obtain. A service user explained:
“That’s difficult, because a bit of excitement is still okay, it says [in my SBD], and that is of course hard to estimate with my illness, because it is difficult to estimate: when is it still within normal limits and when is it becoming hypomanic?” (Participant 4 – service user).
Because of such uncertainties, disagreements between professionals, relatives, and service users can arise regarding the need for SBD activation. One service user gave the following example:
“My sister once called to say that it’s not going well, and then they told her, they said, ‘We saw her yesterday and there was nothing wrong’. And I thought, ‘No’, and you know, within a few weeks, it was clear that my sister was right, my sister was there when it happened before. So it is important to me that if those things are in it, then act on it, and don’t think from your own perspective like, ‘Yes, well’.” (Participant 5 – service user).
Predominantly professionals raised the concern that SBDs may not be accessible during mental health crises, for instance because of limited communication between outpatient and inpatient teams. A professional recalled the following case:
“It kind of missed its target, the outpatient team came to the ward only a week later, telling us that she had a self-binding directive. Her approach was that if she was admitted, she wanted medication immediately, but due to poor communication, this was not done for a week.” (Participant 19 – psychologist).
Non-compliance with SBDs, whether due to issues related to feasibility, decision-making regarding SBD activation, or inaccessibility of SBDs, can result in profound disappointment among service users and this can be detrimental to the therapeutic relationship. One service user reported that he had documented a preference for biperiden over antipsychotic medication for the treatment of psychotic episodes in his SBD. Most likely, professionals did not comply with this preference because doing so would not be in accord with professional standards (as biperiden is not an antipsychotic but a type of medication often given to reduce side-effects of antipsychotic medication, such as akathisia). Once included in an SBD, however, non-compliance with such a treatment preference can cause additional disappointment and frustration:
“They don’t give me Akineton [brand name for biperiden] on purpose, because Akineton costs some money. Haldol [brand name for haloperidol] we have in stock… but Akineton is the key. But they don’t give me that […]. And it is clearly stated on paper that I want it that way… But I don’t even expect them to stick to it. After twenty years, I am done with them [i.e., psychiatrists].” (Participant 2 – service user).
Several service users and professionals worried that SBDs might not be regularly evaluated and updated. As a result, the content of SBDs may become outdated and fail to reflect service users’ preferences. One professional expressed this as follows:
“As a practitioner in the hospital, you must be able to trust that the SBD matches the wishes of the service user. My estimation is that this is not always the case and that evaluation [of SBDs] is therefore insufficient.” (Participant 19 – psychologist).
Barriers to SBD completion
Participants identified multiple barriers to SBD completion (Table 2). Both service users and professionals often mentioned that a lack of knowledge of SBDs among professionals keeps service users from completing an SBD. When professionals have not heard of SBDs or have limited knowledge of SBDs, they are unlikely to discuss the option of drafting an SBD with service users. One service user who recently drafted an SBD mentioned:
“They made it look like it was new and… just discovered or something. And I find that shocking actually, that it has been around for so long and that the possibility has been there for so long, ouch!” (Participant 4 – service user).
Many service users and professionals thought that the completion rates for SBDs are low because a limited number of service users has sufficient motivation to go through the process of advance care planning and sufficient insight into their own illness. Both service users and professionals thought that insight into one’s own illness is a prerequisite for SBD completion. Service users tended to describe lack of insight as an inability to grasp the meaning and consequences of one’s own decisions rather than a denial of one’s psychiatric diagnosis. Professionals tended to think that service users often lacked sufficient insight to be able to complete an SBD without considerable support. A psychiatrist gave the following example:
“He lacks insight into his illness to such an extent that it can conflict with how well he can overlook it all and anticipate the possibility of renewed decompensation. He can do that, overall, but to go into more detail and be able to see the importance of the preventive effect of medication, for example, that is too much.” (Participant 11 – psychiatrist).
Several professionals and service users thought that lack of professional support for SBD completion could explain the low uptake of SBDs. They mentioned several reasons why support may not be given, such as lack of time and professionals’ assumptions about the limited feasibility of SBDs. One service user explained:
“Psychiatrists say that it’s so much work to draft an SBD and that it doesn’t always work well.” (Participant 1 – service user).
Facilitators of SBD completion and activation
Participants also pointed to several facilitators of SBD completion and ways in which the barriers to SBD completion can be removed (Table 2). Both service users and professionals frequently mentioned professional support during the drafting process as a facilitator of SBD completion. Support tended to be understood as a close collaboration between service users and professionals in exploring potential crisis situations, service users’ preferences, and available treatment options. One role that was seen for professionals in the drafting process was checking and providing feedback on the feasibility of the preferences described in SBDs:
“Of course, it is always the case that, because you do this together with your psychiatrist who can of course also say something like, ‘You may not want this, but we just cannot comply with that’. So of course, it is also a negotiation with that practitioner, with that psychiatrist: ‘Yes, you may want to include this, but that’s simply not possible, we cannot comply with that when push comes to shove’.” (Participant 21 – policy expert]
Some participants mentioned the added value of involving peer experts in the drafting process. They explained that peer experts can motivate service users to complete an SBD, mediate between service users and professionals, and ensure that adequate attention is given to the perspectives of service users.
Some service users and professionals considered it important that relatives of service users be involved in the development and activation of SBDs. They explained that relatives have good insight into individual early warning signs and can therefore support service users in specifying the content of their SBD. Relatives can also signal the occurrence of early warning signs described in the SBD and hence recognize situations in which the SBD should be activated. One psychologist noted that the involvement of both a professional and a relative can put checks on the potential incompatibility of the interests of these parties, on the one hand, and those of the service user, on the other:
“As a professional, you can ensure that potential undue influence due to power relations is checked and reflected upon. She [referring to a service user] had an intellectual disability and her partner did not. In this case, the partner and professionals have a shared responsibility to check each other’s influence on the SBD.” (Participant 18 – psychologist).
Service users and professionals also pointed to several facilitators of SBD activation. One of these facilitators was improving the specificity of SBD content. If an SBD contains specific information about its activation criteria and the service user’s treatment preferences, professionals get a better sense of when and how they should intervene in a mental health crisis.
Some service users and professionals had experience with the evaluation of SBDs after the provision of compulsory care, and they identified this as a facilitator of SBD activation. One service user explained that regular evaluation of the SBD helped her to specify the content of her SBD:
“I learned more every time I got ill. So then one can include more information in one’s self-binding directive and elaborate on it, and I was able to describe several types of medication about which I could say, ‘I like those and not those’. And so I think that for new patients who start with it [drafting an SBD], it holds that you learn the more often you get ill.” (Participant 5 – service user).
Effects of the new law on SBD implementation
Participants reported both positive and negative effects of the Law on Compulsory Mental Health Care on the implementation of SBDs (Table 2). Many service users and professionals indicated that the new law could facilitate the implementation of SBDs. Reflecting on their experience as a peer expert, one service user expressed it as follows:
“We used to work very little with self-binding authorizations [the legal basis for SBD activation under the old law] and now it happens more often with the Law on Compulsory Mental Health Care. It seems to be a kind of catalyst for drafting self-binding directives with service users.” (Participant 5 – service user and peer expert).
Several aspects of the new law were thought to facilitate SBD completion. A first aspect mentioned by both service users and professionals was the stronger emphasis on service user autonomy. A second aspect mentioned was the law’s provision for several instruments for the documentation of service users’ preferences, such as a ‘care card’ (zorgkaart) and a ‘personal crisis management plan’ (eigen plan van aanpak). Some professionals indicated that these instruments could be used as a starting point for SBD completion. One professional put it as follows:
“In the new law, […] you can draft a personal crisis management plan, but you can also use a care card, and I think that is an elegant way to at least encourage people to formulate their treatment wishes and needs. This is a kind of a minimal form of self-binding.” (Participant 8 – psychiatrist and medical director).
Participants observed that the new law also poses barriers to the implementation of SBDs. They sometimes raised the worry that professionals may not see the added value of SBDs compared to the care card and the personal crisis management plan. In contrast to SBDs, care cards have no legally binding force and personal crisis management plans are drawn up only after a mental health crisis has become apparent. Nevertheless, participants thought that the differences between these instruments might not be sufficiently clear to service users and professionals alike.
More fundamentally, participants mentioned the law’s lengthy and complex legal procedures for SBD activation as a barrier to SBD implementation. Whereas decompensation can occur and the need for SBD activation can arise within a couple of days, the new legal procedure for obtaining authorization of compulsory care based on an SBD takes much longer than that. Participants offered this as an explanation for why professionals are reluctant to provide support for SBD completion and tend to resort to other ways of considering service users’ preferences in providing compulsory care. A professional explained how experience with legal procedures resulted in low support for SBD implementation:
“I don’t see the advantage [of SBDs] yet, and there is also this very annoying thing, eh, that … at the court they are not all used to it yet and you can see that processes are very slow. So whereas supposedly that authorization should be granted very quickly, it did not work for that patient of mine, for example. I had consulted with him, and everyone including the court agreed that it had to be done now. Then it should be possible to obtain authorization within three days. Well, that didn’t happen.” (Participant 16 – nurse practitioner).