Table 2.
Quotes from focus group participants relating to themes.
| Theme 1: Document form and content | |
| Subtheme: User-friendly format/language | |
| Name | “in terms of the wording ‘self-binding’, it suggests that if something is binding in terms of the contract that some sort of consequence for not following it…. maybe I'm over- thinking it, but I think there are some issues with that wording” (Consultant Psychiatrist) |
| Detail vs practicability | ‘my experience with it has made me want to argue for both extremes, for having a very long form, to prompt very fulsome discussion as a therapeutic thing, because I am of the opinion that it can be therapeutic. But on a practical level it has to be short enough for people to actually read in the notes. So maybe that's two different things.’ (Family member) |
| Structure vs flexibility | ‘I would like lots and lots of different questions to help tease out the….the appropriate and relevant stuff to you.’ (Service User) |
| Subtheme: Relevant content | |
| Personalised relapse indicators | ‘So before you take clothes off….a day or two days before….you see that you drink, you smoke, you take drugs, you don't sleep, you eat rubbish food….junk food…. you get upset, you shout at people, you quarrel. All these things are normal …all the normal people do them, but yours will lead to running naked around the streets, singing Marseille’ (Service user). |
| Facilitating early intervention | ‘there seems to be no intervention until he's at the height of the crisis, whereas there's other symptoms that are lesser….not as detrimental to him… that could be a sign that early intervention is needed, rather than waiting until he's ready to be sectioned.’ (Family member) |
| Facilitating early compulsory treatment | “the person that comes to mind that worked very well, he actually wrote on it, ‘I will say and do anything to avoid admission, so just ignore me, and crack on and do your job’….So that works fantastically well” (AMHP) |
| Preferences for treatments and care settings | ‘Because I think quite often when people are in crisis, and they're not sort of discharged quite quickly, those are the people that tend to miss out on…accessing psychological groups as an inpatient… I think it's important for that to be kind of mapped out somewhere’ (AMHP) |
| Crisis contacts | “many people who when unwell decide that their nearest relative who when well is caring and supportive and understands them, when they're unwell they decide they're poisoning them and they're the cause of all their troubles…So to be able to put in there that ‘Actually this is my nearest relative, and I'm happy for you to contact them, even if I say that they abused me in childhood and poisoned me’. That would be a useful way of us then knowing.” (AMHP) |
| Theme 2: Process and context | |
| Subtheme: Context | |
| Systemic context | |
| Legal provision supporting ADM | ‘we need to be just clear with people around the limitations, and obviously where interacts with the Mental Health Act, but unfortunately as it stands the Mental Health Act can trump these directives…. obviously whether that continues in the future, we'll see with the new Mental Health Act.’ (AMHP) |
| NHS Trust level support | ‘you need to raise it at systemic or strategic level’ (AMHP) |
| Authentic culture of co-production | “has to be validity and ownership around it, not just the person writing it taking ownership, but collectively within the environment and the culture that you're working in….that these are actually valid, and people's views are actually heard, rather than it just being an exercise of making you feel better, that ‘When you become unwell we might do this’” (AMHP) |
| Limited resource | ‘There's going be things that they will not listen to because …of (limited) resources,’ (Service User) |
| Fragmented services | ‘if you end up out of borough or you happen to be unlucky in the wrong postcode, your treatment can wildly differ and no one bothers to communicate back to your home postcode.’ (Service User) |
| Interpersonal context | |
| Difficulties of discussing coercion | ‘an ideal clinical scenario is that people are actively engaging the patient in all detail, risk and coercion. I think that the sad reality is that those tough conversations don't take place.’ (Consultant Psychiatrist) |
| Distress | ‘the patient hates recounting their mental history when they think it should be somewhere else. And this is a big problem.’ (Consultant Psychiatrist) |
| Conflict over treatment recommendations | ‘the reality of the situation that having it written down, that this bit is endorsed by the clinician or not, does set up a lot of conflict in your relationship with the capacitous patient at a time when things are going… potentially going well? … so maybe it just exposes that. That's not to say that you shouldn't….it will bring things up that otherwise people could sort of move on from.’ (Consultant Psychiatrist) |
| Conflict over defining harm | ‘even when people….have decision-making capacity….that doesn't mean that they're making wise decisions or decisions that the teams are going to be able to adhere to.’ (AMHP) |
| Undue influence | ‘it later transpired that it (an ADM document) had been drawn up between the patient and the mother, with whom there was quite a complicated relationship…. was not clear was to what extent the instructions within it were driven by the mother, or whether they were the genuine preferences of the patient.’ (Care Coordinator) |
| Personal context | |
| Acceptance of illness | ‘It can be a difficult diagnosis to accept…So there might be a bit of a lag between someone first having the illness and getting the diagnosis, and actually being able to do this.’ (Family member) |
| Timing creation of document in illness cycle | ‘doing it when one feels well and better is great, and would be the ideal’ (Service User) |
| ‘my best time is always immediately after some sort of big crisis’ (Service User) | |
| Experience of mental health services, including previous compulsory admission | ‘We're all talking about very well-known, well-established people, well-established patterns of illness…. and I think the issue is at what point somebody…. we are clear enough about somebody's patterns of illness and behaviour that this plan would become useful’ (AMHP) |
| Strongly motivated to avoid harm e.g. in perinatal period | ‘I would say pregnant women, definitely…pregnant women, high functioning women….again it's because they do have a lot to lose.’ (Care Coordinator) |
| Subtheme: Document review | |
| ‘the advance directive need not be seen as something which is set in stone, much as it's a very detailed document….there needs to be a review time frame, doesn't there? Because you might find the patient is in a ward setting, having relapsed, thinking to him or herself, “Yes but I did want to change that part of the form but never got round to it.’ (Care Coordinator) | |
| Theme 3: Accessibility | |
| Potential to improve access to clinical information | ‘And in theory, could such a document on some computer system that the wards, the A&E, the NHS, the GP, the psychiatrist…everyone can access it?’ (Service user) |
| Barriers to accessibility | ‘my sort of main concerns are that I'm still convinced that not enough professionals learn from each other or communicate with each other… would it cover enough computer systems?’ (Service User |
| Theme 4: Harnessing Expertise | |
| Service User expertise | ‘these people are the expert in their own illness ….you know, and the impact that that has with their life.’ (AHMP) |
| Family member/friend expertise | ‘We as a family have to try…. and like probe out the psychosis talk, just so they see that he's unwell, otherwise he can easily mask it…otherwise he will go for months where….not quite being sectionable but not being himself, which is very draining and hard.’ (Family member) |
| Clinician expertise | ‘GPs are very happy with this because it means that they can look and see what the psychiatrists want.’ (Service User) |
| Combined expertise | “if there was a crisis coming up and as a team we were aware….the person who'd …co-produced it with them would be able to get that document and…. by sitting down and saying … ‘You've identified these markers, these early warning signs’ ….it was helpful for individuals to realise that something that they'd said earlier and came from them” (AMHP) |
| Theme 5: Personalising medico-legal assessment | |
| On direct engagement with medico-legal framework | I mean, in general, the actual main thrust of it is more, “I do want it”….it's about sectioning….it's about working with the sort of sectioning process….or working with the….or working with the capacity assessment process, to say, you know “I do accept that actually at times I need this treatment, and I want this document to be part of that….to be part of that assessment process.’ (AHMP) |
| Assisting with complex capacity assessments | ‘this form is very useful, and clearly all the case law that's coming along says that we need to take into account people's views when they have capacity, and what is known of them.’ (AMHP) |
| Contested capacity | ‘I think by having this document it will help that understanding that ok, he doesn't have capacity and what the family is saying is actually what we've agreed with my dad when he is well.’ (Family member) |
| Simplifying MHA assessments | “the person that comes to mind that worked very well, he actually wrote on it, ‘I will say and do anything to avoid admission, so just ignore me, and crack on and do your job’. He actually wrote that….”I'm prepared to say and do anything to avoid admission, so just do your job when I'm that unwell”. So that works fantastically well.” (AMHP) |
| De-escalation of crises | “I know with the self-binding aspect, it would be very helpful for me, because I mentioned sort of having….sort of taking Olanzapine and being sort of ok about that in a crisis. But I know that if I've gone beyond the sort of initial stages, I would refuse Olanzapine because I've….you know, I open up that leaflet and it says one of the side effects, you know, ‘sudden unexplained death’….and it totally freaks me out, and I also think everyone doesn't have my best interests at heart….so it's sort of….it's making it…self-binding for me would be very useful.” (Service User) |
| Consequence for stakeholders | I'm interested in the terminology of self-binding. Because what's the patient binding themselves legally to, rather than just saying this is my wish list? And also, where does it bind the clinicians who sit down and draw this up if it doesn't get enacted? (Consultant Psychiatrist) |
| Theme 6: Outcomes of ADM | |
| Subtheme: Outcomes of making ADM document | |
| Enhances self-management | we're all about trying to help patients and their relatives, for patients to self manage. And the more that we can do that we can do that in a focused way, I think, the better (Consultant Psychiatrist). |
| Builds shared understanding | ‘the last time I was hospitalised I went in as a voluntary patient, and I was slowly getting to know more about myself…I reckon now is the time that I can be most honest with myself and work out what's going on with myself the most, and be more honest with those nearest to me so that they can pick up the signs’ (Service User) |
| ‘it can help families to come together around the illness in a way that we hadn't before we did this kind of process….to realise that my view of what I had seen and understood of her illness was so different from her experience of it. And to come to some kind of shared understanding of it, and understanding the other person's memories of it’ (Family member) | |
| Builds therapeutic alliance | I think that the notion about increasing therapeutic relationship is a paramount one. I think it's about not only just the contract the patient is signing, but essentially the Trust is signing with the patient. And the whole endeavour is collaborative from the outset (Consultant Psychiatrist) |
| Distress | ‘the patient hates recounting their mental history’ (Consultant Psychiatrist) |
| Conflict | ‘the reality of the situation that having it written down, that this bit is endorsed by the clinician or not, does set up a lot of conflict in your relationship with the capacitous patient at a time when things are going… potentially going well? … so maybe it just exposes that. That's not to say that you shouldn't….it will bring things up that otherwise people could sort of move on from.’ (Consultant Psychiatrist) |
| Undue influence | “There have been huge amounts of pressures from family member sort of saying, you know, ‘Well if you get unwell in the future you're not going to see your kids again’. So, now if that sort of pressure is then on a capacitous person, I can imagine them making a decision that they don't really want to make, because they are, you know, they are being coerced in some shape or form.” (Consultant Psychiatrist) |
| ‘but then people you trust could be manipulating, and use things against you, and relationships break down.’ (Service User) | |
| Subtheme: outcomes of using ADM document during a crisis | |
| Service user empowerment | ‘We're promoting our patients’ autonomy, they get to make statements about what they want to happen during their next crisis…’ (Consultant Psychiatrist). |
| Enhances clinical confidence |
“if you've got that in a document and they did, when they had the capacity, say ‘This is the person I want you to speak to’, then as an AMHP you're going to feel more empowered to speak to that person.” (AMHP) |
| Enhances communication | ‘if the advance directive could assist, as a kind of a quicker way to some of the things that actually are helpful and are known to be helpful, instead of each time that somebody gets admitted.’ (Care coordinator) |
| Concerns that restricts clinical judgement | ‘if it's going to inform a Mental Health Act assessment, in a sense, an early Mental Health Act assessment, then does it undermine the assessor's own thoughts, in a sense, about risk or degree during that assessment’ (Consultant Psychiatrist) |
| Positives of restricting clinicians | ‘I hate to say they (Psychiatrists) were old-fashioned but….I think they were very much of the opinion that….it's for them to decide the treatment. And I think they saw it as them being told by the patient, and people like myself who's not medically trained, the treatment that this patient should be having’ (AMHP) |
| Subtheme: Outcomes of treatment decisions | |
| Service user receives preferred & established treatment | So of course when the person became very ill and they needed to go out….sometimes they were placed in placements very far away…given a number of medications which actually were counterproductive to him becoming well, and actually prolonged and protracted his admission (Care Coordinator) |
| Avoid personally defined harms from illness | ‘he has an ingredient as part of the advance directive, that at the point that he's spent this much money within this much amount of time, his bank card gets given to his mum.’ (AMHP) |
| ‘she's a working person and she doesn't really want to….in terms of damage limitation to her reputation’ (Consultant Psychiatrist) | |
| Avoid personally defined harms from treatment | ‘more advance directives was basically…, thinking of ways with him that we could collaborate to reduce the trauma associated with those experiences’ (AMHP talking about a service user experiencing trauma from compulsory detention and treatment) |
| I put on about 11 kg, which is a lot of weight. Afterwards, you know, trying to get rid of it when you're just not well yourself….so it's hard. Apart from mentally not being well, you stop recognising yourself physically as well (Service User talking about medication side effects) | |
| Receives sub-optimal treatment | ‘the directive might be completely contrary to NICE guidelines, for example, and I guess….I don't know what the plan would be in terms of…if somebody was putting in an advance directive something that was regarded as potentially quite dangerous for them.’ (Care Coordinator) |
| Clinician liability | So the second thing is about how binding it is for the clinician that assesses. And by that I mean, you see a patient, you discharge, commits suicide, goes to coroners, and they say, “Wait a minute. I can see here there was this self-binding directive”… So are they going to be in trouble not following, or are they going to feel, “Oh God, although I do feel that, you know, I could start him on something else, but um….if I do that then I risk my own….” (Consultant Psychiatrist) |
| Subtheme: Long term impact | |
| Reduces trauma of compulsory treatment | The section on inpatient treatment…. acknowledges that inpatient treatment, particularly if you're sectioned, can be awful, and damaging. And I think that, for a lot of people who've experienced it, they don't feel there is that acknowledgment from staff who've looked after them…And that actually the admission might be something that you have to recover from afterwards. (Family member) |
| Earlier presentation | ‘Well I think it empowers people to take a lot of responsibility for keeping themselves well and for…. their seeking out or accepting treatment when they're starting to relapse.’ (AHMP) |
| Shorter/reduced admissions/coercion | ‘So it will be useful before they've been sectioned and hopefully instrumental in them not being sectioned, as a way of helping people looking after them to understand the presentation, and to understand how ill they are.’ (Family member) |
| ‘Peace of mind’ | ‘it might also provide considerable peace of mind to the client themselves, that this is in black and white, in terms of expression of their own personal agency’ (Care Coordinator) |
| ‘I like this concept of legally binding advance decisions, and if I can make it… I would feel safer, and it's wonderful, I think, what you're doing here.’ (Service User) | |
| Disappointment | ‘if you create something that gives people this hope, and then there isn't a provision…. is that even more damaging rather than helpful for them?’ (Consultant Psychiatrist) |