Journal of Psychiatric and Mental Health Nursing, 2015, 22, 149–153

Commentary

Cash, choice, antipsychotic medication and the mental health nurse As part of this special issue of the Journal of Psychiatric and Mental Health Nursing, I have been invited to write a commentary discussing approaches to enhancing medication adherence in schizophrenia. This is a topic that has a history of eliciting a strong reaction from the readership of this Journal, presumably because there is a perception that adherence interventions are either overtly or covertly coercive. This can be true and community treatment orders are perhaps the obvious, but ineffective, example (Rugkasa et al. 2014). Faith in the antipsychotic medications used to treat schizophrenia is probably at an all time low. Were I to be foolish enough to begin this commentary by suggesting that antipsychotic medication was the foundation of schizophrenia treatment, I might expect a torrent of criticism about the toxic effects of drugs and the evils of biological psychiatry. Intervention that seeks to enhance adherence seems to be completely out of kilter with recovery-orientated, consumer-focused mental health services. But in my head, I hear the voices of patients that I have talked to who talk positively about the importance of medication. So for example, one patient said, ‘I believe I’m going to need to take this medication for a lot of years because it suits me. It seems to be helping me and I’ve more self-esteem about myself when I take it’ (Mills et al. 2011). I think that helping patients with medication issues is (and always has been) a core part of the work of nurses working in psychiatric wards and community teams the world over. In this paper, I want to consider potential approaches to medication management.

The drugs do work? Maybe it would be helpful, at this juncture, to set out the state of the art in terms of our understanding of antipsychotic effectiveness. An important systematic review and meta-analysis by Leucht et al. (2012) examined the effectiveness of antipsychotic © 2015 John Wiley & Sons Ltd

drugs compared with placebo at preventing relapse at 1-year follow-up. The review included 65 trials and 6493 patients. Compared with placebo, antipsychotic medication significantly reduced relapse and readmission rates. While it might be argued that more important outcomes from drug treatment might be social participation or employment, relapse is an important outcome for patients, carer and professionals. Weight gain, sedation and movement disorders were common side effects from antipsychotic drugs but perhaps at much lower rates than might be expected. For example, in the meta-analysis, 13% of patients on antipsychotics experienced sedation as a side effect compared with 9% on placebo. It would be remiss to not point out the potentially life-threatening side effects that can occur in patients taking antipsychotic medication. Neuroleptic malignant syndrome (NMS), for example, probably occurs in fewer than 1% of patients treated with typical antipsychotic drugs (Guze et al. 1985). Although the mortality rate is unknown, NMS can be fatal. I have nursed three patients with NMS and know only too well the serious the side effect that can occur from antipsychotic treatment. These risks need to be balanced against the risks of the illness. I can vividly recall all the patients I have cared for who have tragically taken their own lives. Schizophrenia, lest we forget, is a serious, potentially life-threatening illness. Leucht et al.’s (2012) review would seem to provide rather compelling evidence for antipsychotic medication as a foundation for schizophrenia treatment. In fact, the authors argue that antipsychotic drugs achieve one of the largest effect sizes of any of the most commonly used drugs in medicine. Why is our faith so poor? Medication deniers may dismiss the findings of this review on the basis of flawed methodology, pharmaceutical industry bias and data suppression. These are all valid points. There are considerable methodological issues with many of the studies. Few strictly adhered to CONSORT (www.consort-statement.org) guidelines; different studies used different definitions of relapse. These data do, however, at least to my 149

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mind, represent the state of the art in terms of our current understanding of antipsychotic effectiveness. As clinicians, we can either choose to use the evidence from systematic reviews or cherry pick papers that fit our belief system. I choose to work with the highest from of evidence there is (systematic reviews) to inform my practice and (as a researcher) to continuously strive to promote higher quality research. That said, it is important to reflect on the significant limitations of antipsychotic medication. There is also little convincing evidence that they are effective against the negative symptoms of schizophrenia (such social isolation and withdrawal) and talking to many families over the years, it has been these symptoms that have been most challenging to deal with (not voices and delusions where antipsychotic drugs are seemingly effective). I remember quite recently, talking to a mother who was almost shaking with rage because her son would not clean his teeth that were ‘rotten and disgusting’. It has been rather depressing over the past 20 years to see the initially hopeful signs that so-called second generation antipsychotics (risperidone and olanzapine) might be beneficial against these symptoms dwindle and to then observe new drugs with different mechanisms of action fail to live up to their theoretical promise (Arango et al. 2013).

I want to stop the pills Several years ago, I recall working on a trial of an adherence intervention with people with schizophrenia. One element of the intervention was to ask participants about a goal in their life that they wanted to achieve (Gray et al. 2006). The aim was to explore what part the medication might play in achieving (or preventing) this (e.g. medication keeps me well so I can get back to work). What was striking was how many patients had getting off medication as their goal. Recently, I was in one of the psychiatric wards in Doha, Qatar, where I currently work and a patient said to me ‘I need to get off this filthy medication, I’m not ill there is nothing wrong with me’. It made me reflect that while we might obsess about cultural differences, there seems to be truth the world over that most people prescribed antipsychotic medication do not want to take it. I do not think this is an irrational position for patients to take, quite the opposite. People do not like taking pills (medication) and this skepti150

cism, I think, is healthy. Statistics about the rates of non-adherence in people with a diagnosis of schizophrenia have been often repeated, although they are almost certainly wrong. Primarily, because there is no valid way of measuring if a patient has or has not taken the pills (except, and we will return to this, to give depot injections; Kikkert et al. 2008). A meta-analysis by Lacro et al. (2002) observed that, dependent on the criteria applied, between 41% and 50% of people with a diagnosis of schizophrenia were non-adherent (had stopped medication completely). These rates are remarkably similar to other long-term conditions (World Health Organization 2003). It is a common clinical situation situation, a patient says that he/she wants to ‘stop taking medication’. I can either actively support him/her to stop or I can try and persuade (coerce perhaps) him/her in to being more compliant. If a patient says he/she wants to stop and he/she has the mental capacity, surely it is his/her right to choose to quit. To my mind, this misplaced progressive liberalism is based on the assumption that if a patient says he/she wants to stop he/she has reflected and considered the consequences of the decision. In my experience, this is rarely the case. For example, patients will often report (wrongly) that the chance of relapse if they stop medication is low (Almerie et al. 2008). My point, people make mistakes, we get things wrong and we regret the consequences. We need help to consider our decisions, have them challenged.

Challenging choices or coercion? I have spent the last 20 years working on the development and testing of interventions to enhance medication adherence. I chose this line of inquiry because I spent so much of my day as a (young) clinical nurse discussing medication (‘why are you giving me this poison’) issues with patients and I wanted to understand what the best way of tackling them was. I know many nurses struggle with promoting adherence to a treatment that they have (generally) not prescribed. Shouldn’t responsibility sit with the person who prescribed the medication? Over the years, I (and my colleagues) have taken a fair amount of criticism from readers of this journal. I recall at one point having my ‘humanity’ questioned by one contributor commenting on my writing (Clarke 2000). The implicit (and on occasion explicit) criticism has been that I have been © 2015 John Wiley & Sons Ltd

Commentary

encouraging nurses to coerce patients into taking medication they have not prescribed. Mental health nurses have, or at least should have, a tremendous amount of face-to-face contact with patients; issues around medication are bound to come up during those conversations, surely those opportunities need to be used productively. If I were to try and distill my work into one sentence it might be this – it is the work of the mental health nurses to help patients think through their decisions about taking or not taking antipsychotic medication. I have always argued that it is important to challenge choices, consider alternatives and reflect on the consequences of decisions. This work takes time; it is perhaps a failing of my own scholarship that I have often focused on testing a time limited ‘adherence therapy’ (Schulz et al. 2013) rather than the effects of an ongoing ‘medication management’ process (Gray et al. 2004). After all, each time a patient pops a pill in their mouth or has an injection, he/she is making a choice (except when health professionals impose the choice of course). Mental health nursing is about (relatively) long-term collaborative relationships with patients within which they can continually revise and reflect on what works for that individual. I do not see this approach to working as brutal or coercive; I see it as helpful and caring. It is what I would want of a nurse if I were sick. I have been involved in a series of randomized controlled clinical trials (RCTs) testing the efficacy of what we decided to call adherence therapy (e.g. Gray et al. 2006, Schulz et al. 2013). In my experience, particularly my experience presenting at professional conferences, mental health nurses often (aggressively) challenge the veracity of evidence generated through clinical trial research. The experiment is, however, fundamental to the scientific method. Most adherence therapy trials have reported positive findings. For example, the most recent study involved 70 patients and reported significant improvements in symptoms compared with usual care (von Bormann et al. 2015). Generally, the main outcome of interest in these trials has been psychiatric symptoms, relapse or adherence. Given that the focus of the intervention is on the decision-making process (which as health professionals we might then hope will result in enhanced adherence), it may have been more appropriate to have focused on testing the effect of adherence therapy on this rather than ‘hard’ clinical outcomes. This is perhaps something to consider in © 2015 John Wiley & Sons Ltd

future research. Adherence therapy is a timeconsuming, relatively complex intervention. Training nurses to deliver adherence therapy takes several days (Gray et al. 2004, Brown et al. 2013) and although training seems to be effective, there is no guarantee that it will be faithfully applied in practice. Researchers have been searching for a magic bullet, an intervention that is simple and effective (unlike adherence therapy which is complex) at enhancing medication adherence. This brings us neatly to considering the use of financial incentives.

Paying people to take medication Theoretically, paying patients capitalizes on our desire for immediate gain (cash) rather than longterm reward (better health, present bias). For example, a pilot scheme in the North of England rewarded women who breast-fed for 6 weeks by giving them £120 of shopping vouchers with an additional £80 if they fed to 6 months, an immediate reward for a behaviour with long-term benefits for the baby and, arguably, society more generally. The scheme gained considerable media attention triggering moral indignation with the payment being described as little more than a bribe that women would spend on booze and fags (http:// www.telegraph.co.uk/health/10443233/Mothers -might-not-breastfeed-after-taking-200-NHS-bribe -MP-warns.html). In the substance misuse field, there is a history of using financial incentives and authors of metaanalysis have demonstrated established short-term (but not long-term) effectiveness (Giles et al. 2014). Perhaps, not surprisingly, the higher the value of the monetary reward the less likely patients were to take drugs. There have also been studies that have shown that, particularly in developing economies, financial incentive can be effective at increasing attendance for vaccinations and for enhancing medication adherence rates (Giles et al. 2014). One systematic review found that 10 out of 11 trials that tested financial incentives showed positive effects on adherence (Giuffrida & Torgerson 1997). A more recent review included 15 RCTs and six non-RCTs. The authors concluded that financial incentives were effective across a range of long-term conditions that included human immunodeficiency virus, stroke and schizophrenia. A weekly cash payment of $50US or more were most effective (Petry et al. 2012). 151

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Cash for (antipsychotic) injections Returning, briefly, to the Leucht et al. (2012) review, relapse rates were significantly lower in patients prescribed depot antipsychotic medication compared with those on oral drugs. Presumably, this was because patients were more adherent with injections. Depots, however, have a long-standing image problem, at least with clinicians (Patel & David 2005). They are perceived as a way of forcing (coercing) reticent, ‘difficult’ patients to take medication (Patel & David 2005). Paradoxically, there is evidence that patients prescribed with depots are actually pretty positive about this method of having medication administered, especially those already having injections (Walburn et al. 2001, Waddell & Taylor 2009). As a slight aside, one of the oftenoverlooked advantages of depot medications is that you have an accurate measure of patients’ adherence. Combining depot administration with financial incentive may be a simple and effective method of enhancing adherence in people with schizophrenia. This was the hypothesis that Priebe et al. (2013) tested in a cluster RCT. The study involved 73 clinical teams and 141 patients. Patients that were receiving long-acting injections of antipsychotic medication got either £15 (cash) each time they had their depot or continued with treatment as usual (no cash). Patients were followed-up for a year and at the end of the trial those receiving the cash were significantly more adherent and had enhanced quality of life compared with those in the control group. The authors report few adverse events associated with the intervention. This is perhaps one of the biggest unknowns with the trial because many possible ‘side effects’ were not described. For example, the effect on the therapeutic relationship was not reported, neither were details on how patients spent the cash. It might be argued that £15 every few weeks is a modest amount of money. As with the breastfeeding example, I have heard a number of (informed) colleagues speculate that the cash was spent on cigarettes and alcohol and this was why patient’s quality of life improved. Although mischievous, this observation, if true, raises important questions about the unintended consequence of cash for injections. Is it okay if the cash is spent on substances that have a known detrimental effect on health? Is it an expectation that patients would be paid indefinitely? There are also important ethical considerations; what if a 152

patient was being paid to take medication and then developed NMS? It says much about the acceptability of the approach that not one of the 73 teams that took part in the trial continued with the payment scheme when the project stopped. The paper, published in the British Medical Journal, provoked a strong response. Perhaps, a clear sentiment among commentators was the damage that paying patients would have on the therapeutic relationship between clinician and patient. I did some work talking with clinicians about what they thought about cash for depots. We interviewed 35 mental health professionals and the lack of enthusiasm was palpable, one participant captured the sentiment of those we spoke to by describing it as ‘instinctively wrong’ (Brown & Gray 2015). Perhaps, this discomfort is a cultural artifact; most of the financial incentive research to date has been done in the United States (where money talks). Does £15 force patients to do something they do not want to? The strength of evidence at the moment is such that I would imagine it unlikely that authors of practice guidelines would recommend widespread adoption. If they did, we would be in the somewhat curious position of rejecting a mental health intervention that actually seems to work.

Conclusion For people with schizophrenia, medication will likely be an important part of their treatment. Talking with patients, challenging their views about treatment, is part of a decision-making process that I believe to be caring not coercive. Even though financial incentives seem to be an effective strategy for enhancing medication adherence, there is no appetite among clinicians to use them in practice. A potential damage to the therapeutic relationship too high a price to pay. There is certainly a need for further trials that more closely monitor the unintended consequences of financial incentives. Subsequent trials would also need to have an active control not just treatment as usual (placebo money perhaps). To conclude, and I have made this point many times before, adherence to treatment, I believe, is an important nursing issue and not one that we can afford to keep ignoring. R. GRAY RN PhD Assistant Executive Director of Research, Hamad Medical Corporation, Doha, Qatar © 2015 John Wiley & Sons Ltd

Commentary

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Cash, choice, antipsychotic medication and the mental health nurse.

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