Most participants presented the choice of antipsychotic decision making process as being one that should be shared between the psychiatrist and service user:
In discussing the initiation of antipsychotic therapy some participants recommended a period of medication-free assessment before prescribing. Only one participant proposed that there may be an alternative to antipsychotic prescribing as the primary method of treating psychosis - this view was presented by a Medical Psychotherapist, who also utilised prescribing as part of their clinical practice, they proposed that psychotherapy be used as the treatment of choice with antipsychotic medication being used as an adjunct only if necessary.
Views relating to the primacy of antipsychotic medication as the technological treatment modality for psychosis will likely influence the manner in which information is presented to patients during consultation.
In common with the updated framework described by Charles and colleagues one participant described the process of involving service users in decision making as particularly complex, necessitating a change in role for the clinician, or shift in responsibility for decisions dependent on the context.
Eight participants described in detail in the process and nature of information sharing between clinician and patient. Participants highlighted the importance of eliciting the preferences of service users in relation to medication side-effects and incorporating this into the decision making process:
“[I]t is something that I talk to people, or counsel people, about and if they have a strong volition, not to have a particular side-effect, or are wary, whether I think that’s a real, whether I think there’s proper evidence for that or not, you try and work with people I think.” [Int004]
“[T]he person in front of you will come with their own beliefs, their own wishes.” [Int005]
Some participants described the transfer of information as being necessary to improve compliance, or as an essential process in informing another of a decision that had already been made. The term “compliance” is used advisedly in this context to represent the meaning of “taking” of prescribed medication, a passive action; this is opposed to the active act of “concordance” where the recipient recognises and fully “accepts” the role of medication [
20]:
“I tend to be very direct with patients because it increases the likelihood of taking it if you know what it’s for and what is likely to happen to you and why you’re being given it.” [Int001]
“I think if they do feel that they have some choice, then that is helpful, if they have a choice around, not perhaps taking medication or not, but actually some choice within the medications that they take.” [Int018]
Previous work in this area has identified that clinicians are at times reluctant to discuss side-effects relating to a medication, believing that it may impact on the chance of the service user’s compliance [
11]. This was not described during these interviews. There was a sense in which the clinician’s own perspective on side-effects might impact on their information sharing practice. Older first-generation, also referred to as “typical” antipsychotics, exemplified by Haloperidol, are recognised as leading to motor side-effects, including muscle spasms, dystonias, or rapid purposeless movements, dyskinesias. More modern second-generation, “atypical”, agents, exemplified by Olanzapine, predispose more to metabolic side-effects such as weight gain and impaired glucose tolerance [
21‐
23]. During these interviews the distinction between antipsychotics predisposing to motor side-effects and metabolic side-effects was drawn, with a sense of responsibility for inducing the more immediate motor side-effects being described by participants, metabolic side-effects were presented as less visible and, while still of concern, the degree of responsibility, on the part of the prescribing clinician, was absent from descriptions.
“[I]t’s so visible tardive dyskinesia… and also torsion dystonias I’ve seen, some horrible ones of those as well, that people need Botulinum Toxin and so forth… and it is extremely visible, so it’s a horrible thing to inflict...” [Int006]
It is proposed that biases within the clinician’s clinical experience, for example avoiding the visible side-effects of antipsychotics such as Haloperidol, will influence the manner in which information is shared and represent a point in the process where coercion may be unduly exerted.
2. Deliberation
22 participants described the manner in which they engaged in discussion with service users, presenting their opinion regarding management options and refining this based on feedback received.
“ [I]f their preference fits in with what I happen to think is the best one for them then it’s very straight forward, if it doesn’t then that that starts off a conversation about why what the advantages of them taking the medication they have chosen and perhaps the disadvantages of that and whether some other preparation might have more advantages or have certain advantages that they’ve not thought about, if in the end it doesn’t really matter that much what preparation it is then I tend to go with what the patients want.” [Int026]
In considering the process of deliberation, jointly between service-user and psychiatrist, most participants described the role of insight as a factor in psychosis that would limit, or completely prevent, shared decision making. For some this was presented as a restriction that necessitated strategies to ensure the service-user was as involved as possible in the decision making process, or that family members or other potential carers were involved. For six participants the impact on insight on the individual’s capacity to consent was an absolute contraindication to shared decision making.
“ Some patients are just too unwell to make that kind of decision, they can have no capacity at all to make that kind of decision at the time of admission, in which case we just have to go with what we feel is advisable at that time.” [Int001]
“[I]f I was to see someone, who was acutely psychotic, very behaviourally disturbed, poor insight, it’s obviously not going to be possible, at that particular point in time, to go through, all the side-effects of all the different antipsychotic medications, and expect a patient, at that point, to be able to, to engage in that process.” [Int010]
“So, I think, at that stage you, well I attempt to, discuss the issues with the patient but, to be perfectly honest, if it’s clear that they’re insightless, or that they’re not going to agree, and you get that, not only with the one-to-one conversation that you have, but also being aware of how they’re being, from the time they’re admitted to the unit. I don’t think there is much point, at that, moment in time, to get into a conflict.” [Int013]
“I think giving patients choice is um is ideal if you can but at best um at worst I should say it is rather idealistic you know I’ve got a patient in front of me who is floridly psychotic and totally insightless” [Int024]
These participants presented insight in psychosis as a binary concept - present or absent. This has traditionally been accepted as an adequate model of insight, however more recent models propose that insight be considered a dynamic, multidimensional, process [
24]. Reduced insight has been recognised as a barrier to seeking treatment and engagement with offered therapies and it has also been proposed that in such cases the adoption of more paternalistic approach to care is ethically appropriate; however qualitative research into the experiences of individuals suffering with psychotic disorders have also emphasised the importance of ensuring that autonomy be respected as far as possible throughout the clinical presentation [
25,
26]. In this study if the clinician considered the service-user unable to participate in the decision making process then strategies were described such that a decision could be reached in the best interests of the individual. In this way participants described taking steps to ascertain any prior wishes of the service-user, this enable them to act as an agent representing the other party. This model of decision making is generally recognised as being complicated by difficulties involved in the clinician gathering all relevant information relating to the decision to be made [
27].
“[I]t depends on the amount of information that you have, but I think I would go again back to taking a good history, and if you can’t take a good history from the patient from the informants around them, and sort of then choosing in terms of best evidence what you know about the patient, what you know about what they might have said in the past, advanced directives, things like that. You’ve got to actually take in all of that into account, and then decide, well, this drug would be the best, you know, in terms of outcomes that I think in the longer term not only would get the patient better but might be something that once they regain capacity, they will be willing to continue to take.” [Int023]
In describing the processes involved in reaching a decision, 18 participants also detailed a number of factors that they perceived would impact on the process. These factors were external to the physician-patient relationship, but would affect both parties either individually or together. It can be proposed that the decision making encounter represents an example of where clinician and patient work together in order to construct an interpretation of experience - factors and expectations external to the therapeutic dyad may possibly exert an undue influence on this process.
External factors influencing the clinician
Factors external to the relationship but impacting on the decisions of the psychiatrist included pressures from the nature of the clinical environment and also from other colleagues, for example nursing staff, who contribute to the care of the service-user. In terms of the environment participants described their choice as being restricted by the nature of the environment that the service-user was within and a need to “contain” them safely within that environment.
“Certainly looking at people in prison and, to a certain extent, causing problems on any unit, they just want the behaviour to settle, and I think… being honest, I don’t think they really care, as long as, yeah, yeah, but to be honest, I think, even if they just sleep, even if all the antipsychotic does is sedate them, you know, they’re happier with that then, having somebody, you know, shouting or screaming all night, or whatever it is.” [Int013]
“Because you have patients who are unwell, and you are managing them in their own home. So that puts in a different dynamic to your prescribing, because you need something that acts quickly, something that doesn’t have major side effects.” [Int022]
Pressures were also described as limiting the flexibility for decisions to be reviewed in the future, particularly if there was a need for people to move through hospital quickly and be discharged.
“The difficulty that we have in psychiatry, and I think in all medicine to be honest, about this sort of bed pressures and things like that, a lot of people get better on a medication that they were started on, and then people are very worried about rocking the boat. So they might put them on something in the beginning and they might think, oh I’ll later change it to another medication, but by that time the patient might be ready for discharge, or you feel oh well they’re just better now I don’t want to try anything different that’s going to make them unwell again, they’re back into hospital.” [Int023]
Other clinical staff also were described as having expectations in terms of prescribing, necessitating the use of medication that others were perceived as having “faith” in.
“I’ve got a good relationship with the nurses I work with and they’ve never fought me on any of them [decisions], yet, I’m sure they will, but I’m sure they have done with other consultants and they’ve said; “we really think”,the one I’m thinking about was about Clopixol, Acuphase, they thought it would be very useful for a patient and the consultant didn’t. The consultant would bear the responsibility for that decision, not the nursing staff so, so you know, I think that’s a difficult game.” [Int003]
Finally 18 clinicians also described the role of financial pressures impacting on their prescribing choices, particularly in the development of local guidelines or funding decisions negotiated with primary care trusts, who hold the budget for prescribing. Overall this restriction was perceived as limiting the options available to the service-user.
External factors influencing the client
In terms of external factors impacting on the service-user’s decision, eight participants described the role of society’s expectations and widely held beliefs relating to medication, in particular the view of antipsychotic medication as a having tranquillising effects. The specific role of medication in mental disorder, with medications representing coping strategies for both service users and psychiatrists, and the historical perception of psychiatry’s role in society, with psychiatrists viewed as reducing human suffering to a purely biological process, were also discussed. The ability of psychiatrists to provide treatment through use of Mental Health Law was also highlighted as limiting potential engagement between psychiatrist and service-user, participants felt that concern relating to the perception of Mental Health Law as allowing compulsory treatment would erode trust between the service-user and psychiatrist.
“So, the other thing is, that the drugs are often used as transition objects, so having them makes them feel like they’ve got something that’s like a safety blanket, so they feel better because they’ve got something to take, so often they want to have drugs, even if they’re not taking them, so they want the prescription, they want to have the bottle in their hand, but then they won’t take them.” [Int014]
“I think a complete lay person thinks antipsychotics are some huge, heavy duty, massively sedating and tranquillising, thing that rots your brain and stops your functioning, and just sort of zombifies people. You hear people saying things like doped up to their eye balls on medication, I think that’s the perception people sometimes have, and really that’s far from [quiet laugh] necessary isn’t it.” [Int001]
“[T]hey would regard it as being something that is necessary to manage psychotic illnesses, I mean, I would imagine that there is a public perception of psychosis or psychotic illnesses that is, tends to be, obviously quite, negative in terms of looking at the problems people with psychosis might pose and they would concentrate really on the rare instances of risks.” [Int002]
“[W]hen I started, there was a perception, of you know, psychiatrists being pill pushers, you know chemical cosh, reaching for the prescription pad in the face of human distress, I’m not sure that’s changed massively.” [Int012]
The complexities and meanings of medication within society, beyond the intended purpose on prescription, have been previously described and can be recognised as being particularly complex in the case of mental disorders where psychological and sociological processes play a substantial role [
20].
3. Deciding on treatment options
The role of decision support tools to support service-users and clinicians have previously been explored in relation to shared decision making [
5,
28]. One participant in this project also described methods of providing information to service-users.
“With first episode people, or with patients, what we tend to is offer people a choice of four. So, we’ll talk to them about what side-effects, and effects of the medication they’re interested in, what they rate most highly is important, and then, we’ll pick four antipsychotics, that essentially offer a contrasting choice, of these different things, two first generation and two second generation, and, then we’ll let them, pick which one they want, and, and then we’ll just go down that route.” [Int015]
Three participants highlighted the importance of optimism and presenting the choice of antipsychotic prescription not as absolute, but as a trial that could be reviewed dependent on clinical response and side-effects. This approach is consistent with that recommended in the current guidelines from the National Institute of Health and Care Excellence in the treatment of Schizophrenia [
29].
“You’ve got to give a measured approach, I try and sound optimistic, so I say, this might well work, it works for some people, but not all, what we’ve got to do is just try you on a little bit and see, and there are other things I can try, but let’s just start, one thing at a time, give it a good go, it’s up to you, and then see what happens.” [Int011]
The concept of revisiting treatment decisions was raised by participants and was presented as being particularly problematic when decisions had been taken
without the service-users initial involvement. A pressure was then described between the need to meet the expectations of the individual, now with capacity to engage with treatment decisions, while also maintaining on-going treatment. Clinicians acknowledged that this subsequent discussion was a time when the interaction was likely to be at risk of coercion, with pressure being exerted by clinicians to encourage the service-user to remain compliant with a treatment already commenced [
13]. Prescribing decisions will also be naturally revisited in subsequent review appointments - the decision to take medication, or not, does not represent a discrete choice for the client, but is instead a continuous process. These subsequent reviews are likely therefore significant and need additional consideration.