The Clozapine Clinic

Health Agency in High-Risk Conditions

Julia Brown

• Publisher: Routledge
• Year: 2022
• Print ISBN: 9780367862725
• eBook ISBN: 9781000579611
• Edition: 1
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

This book is the first ethnography of the little-known world of clozapine clinics in Australia and the United Kingdom. Anthropologist Julia Brown engages with the narratives of people living in extreme health circumstances to challenge some of the assumptions made about clozapine treatment and to explore what it means to be diagnosed with 'treatment-resistant schizophrenia.'

Clozapine is a gold standard but controversial treatment for psychosis that requires lifelong monitoring to reduce fatality caused by clozapine side effects. Focusing on the social world of the clozapine clinic and based on the author's own extensive research, this book explores what it means to live with the interpersonal challenges of psychosis and trauma, the risks of multi-morbidity, and how clozapine clients can experience meaningful control over their health. Brown uses her findings to point to the practical clinical implications of clozapine clients being given more recognition and accountability, and to explore how health agency relates to moral agency.

The Clozapine Clinic particularly highlights the importance of investing in continuity of healthcare and is an essential read for caregivers who work with sufferers of psychosis as well as academics and policymakers focused on mental health.

Part I

Health agency

DOI: 10.4324/9781003018087-2

Trevor felt himself to be relatively healthy. At fifty-five years of age, he reflected, “considering everything that happened to me, I’m in pretty good condition, I think… I’m just going to carry on as I’m doing.” He was simultaneously mystified and humbled by his own endurance: “There are certain aspects of my illness that I don’t really understand, you know, I don’t know how to explain them… I survived and coped with my illness, against all the odds.”

Born in England, Trevor and his white middle class family had moved to a conflict-ridden African country when Trevor was two years old. He lived in Africa until he became mentally unwell as a young adult. He did not have an easy childhood – his mother was “cruel” and had been hospitalised several times for suicide attempts (“some of my mental illness results from experiences in childhood, with my mother’s behaviour”) and his father remarried and had another family (“it upset all his children and made us nervous”). There were ongoing financial strains and bourgeoning political and racial tensions in Africa. Trevor put his first experience of psychosis down to consuming what was “supposed to be a blood pressure medication,” which he suspects was actually “planted” on him by the local government, a “dictatorship” that was “evil” and “very racist.” Having struggled with healthcare, employment and housing in Africa, he described feeling much safer upon returning to his home country.

Trevor, who had been back in the U.K. and taking clozapine for nearly thirty years by the time we met, said: “for most people, there’s no better drug for schizophrenia than clozapine.” At the same time, he asserted, “I think I was getting better naturally as well; it wasn’t just the clozapine; my health was slowly getting back to normal anyway.” He held a certain ‘autobiographical power’ over his narrative (Myers and Ziv 2016). Having put up with poor treatments in the past, he was decidedly less bothered by the side effects of clozapine, “because all these drugs have side effects of one kind or another.” He felt accountable to the clinic: he chose to collect his clozapine from the clinic on a weekly basis (instead of collecting a monthly pack when he had his bloods done) as part of his routine. He was quick to suggest that it was most convenient for him if he and I met at the same time each fortnight, and so our first four interviews took place fortnightly.

Trevor often sat pensively as we chatted. He stared straight ahead, discerningly, with his pale blue eyes while he thought about my questions, gently returning and holding eye contact as he answered. Like many clozapine clients, he was a heavy smoker, and we always seemed to come back to the topic of his smoking on the five occasions that I interviewed him.¹ Trevor smoked 40 cigarettes a day, and he had been smoking since the age of fifteen. During our interviews, his arms tended to be folded over one another at the elbows, one hand sometimes gesturing as though he had a cigarette in it.

Smoking had become Trevor’s health remedy at the same time as constituting a danger. He was well aware that “slowly it does irreparable damage … But it varies a lot between people;” “some people die – even if they’re smokers – of something else.” Just recently, Trevor’s sister, also a committed smoker living with emphysema, had died by suicide “out of the blue.” Drawing from clinical information, recollections of his mother and his own past suicide attempts (pre-clozapine), he reasoned that, “it’s not when you’re seriously ill, it’s when you’re getting better that you’re most at risk of suicide.” Trevor did not connect his sister’s suicide with her experiences of emphysema. If he himself developed emphysema, he would “have to adapt” by “substantially reducing” his smoking. “If I started getting health problems, I’d seriously consider switching to electronic cigarettes.” In the meantime, smoking and death (by any means) were separable matters.

I asked if the financial burden worried him. Trevor replied, “you can’t tell me to stop smoking, I don’t care what the tax is on it.” Besides, “I’m smoking Carlton; they’re the cheapest cigarettes I can find at the moment … I’m saving about 85 pence on every packet now, so every ten packets I smoke I’m spending 8 pounds 50 less.” He had calculated that he was now “saving about 17 pounds a week, on cigarettes.” He did not like to live beyond his means. He carried around his daily belongings in a used shopping bag and wore clothes completely out before replacing them. He felt himself to be resourceful and economically rational when it came to smoking.

On the effects of his smoking on his body, Trevor said: “It’s amazing how quickly the body actually recovers from the effects of smoking, you know, in just twenty minutes not smoking, your body has, quite considerably, recovered from a lot of it, and, you know, after several hours, you know, it’s cleaned your lungs out and got rid of mucous and all sorts of things … the body recovers.” He felt he could control any potential damage by having breaks from smoking throughout the day and overnight: “when you go to bed, you’re sleeping for quite a number of hours aren’t you? And your lungs are healing in the meantime.” Trevor had read about the body’s recovery times in the Quit Smoking leaflet of the clozapine clinic. It is not unusual for smokers to repurpose information like this (Dennis 2016).

1 Five interviews constituted the upper limit decided by the Human Research Ethics Committee overseeing my research, and so Trevor and I saved the final interview for my second field visit.

Trevor had a clear sense that the damage was not yet done; different compartments of health could be restored. When talking about his diagnosis of schizophrenia, he remarked: “It’s amazing how the mind can be disrupted and how it can recover and come back to normal isn’t it? It’s absolutely amazing … You can’t tell me from any normal person now, can you?”

While breaks between cigarettes restored feelings of function to Trevor’s lungs, smoking also restored his ‘mental’ well-being: “it helps me to deal with my symptoms of schizophrenia – I think it might be somewhat antipsychotic … smoking and clozapine are inter-related.” After all, “smoking is very, very complicated, its partly the taste, its partly the actions, it’s … relaxing you … it’s helping you think.” He was quick to point out that, “most people with schizophrenia do smoke, you know, and there’s a reason for it.” Some scientific evidence does indeed point to α7 nicotinic receptors as constituting part of the genetic puzzle of psychosis (Terry and Callahan 2020).² Trevor routinely reported his smoking status to clinicians, knowing that it would help to determine his clozapine dose: he was not wrong when he told me how smoking “knocks the clozapine out” of blood plasma and neuroreceptor occupation (Brown, Gartner, and Carter 2019).

With his smoking regimen self-accounted for, it was Trevor’s high cholesterol levels that he was figuring out how to control. He appreciated the information to work with: “It was nice to know that I had high cholesterol, because if you didn’t know you wouldn’t be able to change things, would you?” He had since altered his eating behaviour and felt, without his cholesterol being remeasured yet, that he had made “quite a difference on it.” He kept his weight down by walking every day, and he liked that the clozapine clinic tracked his Body Mass Index: “if your weight’s changing, going up or down, you know about it and you can adjust things as a result.”

Above all, Trevor reiterated: “I’m not expecting anything to go majorly wrong.” He summarised,

I think I’m in a good state of well-being at the moment, you know, I’ve been out of hospital a very long time, I’ve been stable for a very long time. I’m coping with most aspects of life. Um, I’m enjoying life, I’m forgetting about the past … There’s nothing majorly wrong with me. It’d be interesting to see what my cholesterol is doing, though, wouldn’t it? I haven’t had it checked since I changed my eating habits; it’d be interesting to check to see what it’s doing.

2 Despite evidence that nicotine replacements might help, pharmaceutical companies have held back on this kind of medication development (Olincy, Young, and Freedman 1997; Terry and Callahan 2020).

Trevor’s health was ultimately his own enterprise. Clinical measures served as helpful evidence of his work (or neglect). He altered his diet, smoked for his mental health but with recovery times to help his body recover, and he felt relatively well despite a spectre of life-long hardships. Trevor had health agency.

1

A universal experience?

DOI: 10.4324/9781003018087-3

Most people experience health agency, and sometimes it is more subtle than Trevor’s. Health agency means feeling some degree of control over your well-being, where well-being is defined on personal terms but necessarily operates in a wider social and biological context. Health agency captures the little things that people do to bring about the potential for improved health, especially in the wake of ill-health, and especially when such ‘self-care’ is least expected or obvious.

Health agency is often more private than simply adopting health behavioural recommendations. Health agency complements the ethos of the ‘new public health’ promulgated by the 1980s WHO Ottawa Charter for Health Promotion, which encouraged individual autonomy over one’s own health rather than one’s health just being up to the doctor (1986). Trevor was actively engaging with his cholesterol levels, but he went further than simply adopting clinical advice.

Health agency also complements Foucault’s ‘technologies of the self’ (1988). Foucault suggested that we keep working on (or ‘acting upon’) ourselves by using behavioural technologies given by social worlds, which change over time (e.g. optimal regimens of exercise). He described how, by monitoring and turning ourselves into more productive, empowered and normative subjects, we can renounce previous aspects of our identities or dissociate from others who deviate from these moral health aspirations. For Foucault, this ongoing and reflexive process creates the possibility of ‘a certain state of happiness, purity, wisdom, perfection, or immortality’ (Foucault 1988: 18). A modern rendering of this is how individuals, under the gaze of biomedical hopes and possible cures, pursue ‘techniques of the molecular self,’ where ‘the capacity to modify one’s self through conscious intervention is exercised at the price of identifying with the gaze of the scientist’ (Rose 1999: 37). For Trevor, health projects were more modest, experimental, and less projecting of social, medical or moral allegory. For others, health projects were more of a mixture of unconventional and conventional discourse.

Health agency reflects the messiness of health practices as lived: it is not about an explicit quest for optimal or even normative health, nor it is about striving for immortality per se. It is often much quieter, flourishing in everyday decisions and from the premise that there are neither clear answers to, nor clear determinants of, any individual’s health. The room for uncertainty in anybody’s eventual fate (or death) makes an individual’s health agency all the more powerful and persistent through contradictions and challenges in healthcare contexts.

One can reformulate socially viable ideas and routines for one’s own personal affirmation. An individual ‘lives by those propositions whose validity is a function of his belief in them,’ as Gregory Bateson once wrote (Ruesch and Bateson 1951: 212). We similarly create our sense of health by living by those health propositions whose validity is a function of our belief in them and a function of our practice of them. Sometimes health practices draw potential from the past more than potential from the present. For clozapine clients, health is particularly precarious, while the past is often painful. Health agency in this context may therefore stem more from experiences in the present – and hope for a future self. (“I’m enjoying life, I’m forgetting about the past,” Trevor had said).

When considering the lived experience of health as residing in what one can do in the present, health is a verb. Similarly, the term ‘agency’ refers to the active sense of ‘doing’ and having purposeful interactions with the world (Giddens 1984). For individuals living with a diagnosis psychiatric illness, agency is evident in and through the very process of managing incomplete knowledge – about oneself and about others’ scepticism of one’s judgement (Weiner 2011). Describing one’s life in terms of fixed illness is unlikely (Jenkins 1997). When it comes to managing multiple health probabilities, individuals enact their health agency by proactively engaging energies located in their bodies, minds, and worlds around them.

2

A framework for understanding health agency

DOI: 10.4324/9781003018087-4

There are four interrelated underpinnings of health agency that I observed in the clozapine treatment context. The first is the personal power that supersedes low expectations about what a healthy self looks like. The second underpinning is the provisional hope that is necessary to withstand apparent threats to health. Third is the continual and creative work that goes into regulating one’s health. Fourth is the underpinning of interpersonal efficacy, a social therapeutic effect from interacting simply and productively with others. These underpinnings of health agency are relative to, but not unique to, having a diagnosis of schizophrenia, being treated with clozapine and facing associated multi-morbidity.

Personal power

It should be underscored that living with a history of diagnosed psychotic illness, and with previous and current threats to one’s life, takes indubitable personal strength. Although one’s social history might become less prominent during clozapine treatment, to have lived through difficult experiences is a significant feat. “I have ended up a very strong person,” Trevor wanted me to remember. When we were talking about ways to improve health, U.K. client Luke said: “that’s what I’m here for isn’t it … survive the schizophrenia, not just, ah, you know, succumb to schizophrenia.” Despite numerous ongoing challenges and fears in the management of his daily life, Luke felt capable: “I look after myself.”

Feeling...

Table of contents

• Cover
• Endorsements
• Half Title
• Series Page
• Title Page
• Copyright Page
• Dedication
• Table of Contents
• Foreword
• Preface
• Introduction: A social and biological axis
• PART I: Health agency
• PART II: Blood work
• PART III: Embracing uncertainty
• PART IV: Finding rhythm, freeing oneself
• Appendix I
• Appendix II
• References
• Index