Basic care as exceptional care: addiction stigma and consumer accounts of quality healthcare in Australia

ABSTRACT

The discrimination faced by people understood to have alcohol or other drug addictions has been the subject of extensive research, with many studies documenting experiences of stigma within healthcare services. Building on this literature, we examine the role of stigma in shaping the healthcare expectations of people seen as affected by alcohol and other drug addictions. Our analysis draws on recent theorisations of stigma as a process of social production to analyse in-depth, qualitative interviews with 20 people who had recently attended an inpatient withdrawal management service. Participants describe as exceptional forms of care that are often taken for granted by other members of the community. We argue that routinised experiences of discrimination work to constitute basic care as exceptional. This finding is significant for two reasons: (1) people who consume alcohol and other drugs often have complex healthcare needs and already encounter obstacles to accessing the care they need, and (2) by positioning people who consume drugs outside the purview of healthcare, this dynamic obstructs their fundamental right to care. We conclude by reflecting on the implications of these findings for those who are often positioned as not entitled to high quality healthcare.

KEYWORDS:

• Stigma
• drug consumption
• healthcare
• healthcare quality
• addiction

Introduction

Patterns of licit and illicit drug consumption understood to constitute an ‘addiction’ have long been associated with moral decay and seen as a threat to the ideal of the rational, choosing subject (Keane, 2002). The abject status of addiction means that experiences of stigma are so ubiquitous as to constitute the very fabric of everyday life for those affected. Given its pervasiveness, it is not surprising that addiction stigma has been the focus of a significant amount of research. Much of this literature explores experiences of stigma in the healthcare sector, emphasising that it acts as a significant barrier to accessing specialist treatment and primary healthcare for those who need it (Brener, Von Hippel, Kippax, & Preacher, 2010; Treloar, Rance, Yates, & Mao, 2016). In a context constrained by stretched resources with significant unmet demand for alcohol and other drug treatment (Ritter, Chalmers, & Gomez, 2019), many of those who do gain access to treatment continue to face challenges associated with mental health conditions, medical issues, insecure housing, interactions with the criminal justice system and unemployment (Lubman et al., 2016; Manning et al., 2017). In this article, we build on this extensive body of research to explore the relationship between addiction stigma and the healthcare expectations of affected individuals.

Drawing on Fraser et al.’s (2017) account of stigma as a process of social production, and data from interviews with 20 people who had recently attended an inpatient withdrawal management service, we analyse the relationship between stigma and the level of care that people experiencing alcohol and other drug-related issues expect and desire. In this way, we shift the focus from a primary concern with overt or subtle addiction-related discrimination, found in much research on stigma, to analyse how stigma shapes the healthcare expectations of affected individuals. We argue that consistent experiences of stigma operate to position healthcare encounters that offer basic or even minimal care as examples of exceptional practice. In turn, this process positions any healthcare access for people who consume drugs as exceptional, rather than a basic entitlement. Implicit here is an assumption that people who consume drugs are an extra burden on public health resources rather than legitimate citizens worthy of care. This is especially significant as people experiencing issues with alcohol or other drugs often have complex health and social needs, and encounter a range of obstacles to accessing the care they require (Lubman et al., 2016; Manning et al., 2017). Our analysis poses the following questions: For those living under the sign of ‘addiction’, how does stigma shape their expectations of the healthcare system? What do they see as ‘good’ healthcare and how does this relate to the quality of care they routinely receive?

Literature review

A considerable body of research has documented that stigma impedes access to health services for people who consume alcohol and other drugs (for a review see, Lloyd, 2013; McCradden, Vasileva, Orchanian-Cheff, & Buchman, 2019; for examples see, Chan Carusone et al., 2019; Paquette, Syvertsen, & Pollini, 2018). Importantly, primary health services have been identified as key sites of stigma (Lloyd, 2013). Related research suggests that people who consume drugs face near constant discrimination when accessing both specialist and primary health services (Paquette et al., 2018). Indeed, even sites administering harm reduction services can reproduce stigma, with far-reaching effects. For example, experiences of stigma can limit engagement with needle and syringe programs (Simmonds & Coomber, 2009) and shape experiences of drug treatment (Radcliffe & Stevens, 2008). Recent Australian research identifies trust between consumers and healthcare providers as central to addressing this form of stigma (Treloar et al., 2016). Importantly, according to Treloar et al. (2016), trust needs to be intentionally cultivated and maintained as an ongoing project within health services. As documented in a recent review of research on health-related stigma, discriminatory dynamics mapped in settings such as healthcare services are often understood as ‘provider-based stigma’ (Pescosolido & Martin, 2015). Using this concept, researchers generally focus on explicit discriminatory practices of occupational groups designated to provide services for stigmatised populations.

Importantly, research also reveals that stigma is not confined to negative or discriminatory interpersonal interactions but can inhere within institutional processes and structures. For example, Paterson, Hirsch, and Andres (2013) argue that hospital communications processes and other institutional structures contribute to drug-related stigma. Institutionalised forms of stigma are especially concerning because they can position those who consume drugs as a lower priority for healthcare (Olsen, Richardson, Dolan, & Menzel, 2003), with material implications in under-resourced public health settings where care is often triaged and rationed (Ritter et al., 2019). Additionally, stigma can impede access to necessary therapies such as adequate pain management (Chan Carusone et al., 2019). Even more perniciously, expectations and/or experiences of stigma can discourage people who consume drugs from seeking healthcare such that when they do come into contact with health services, they present with more advanced health problems (e.g. Chan Carusone et al., 2019).

Given the large literature on experiences of drug-related stigma and discrimination within the health system, it is perhaps surprising that research on drug consumers’ satisfaction with healthcare does not solely depict dissatisfaction. For example, survey-based research reports dissatisfaction with primary healthcare (e.g. Vandermause & Wood, 2009) but more satisfaction with specialist drug services such as pharmacotherapy (e.g. Madden, Lea, Bath, & Winstock, 2008; Trujols, Iraurgi, Oviedo-Joekes, & Guàrdia-Olmos, 2014). However, as Madden et al. (2008) note, satisfaction must be understood in relation to what consumers have come to expect and feel entitled to. In line with this observation, Trujols et al. (2014) argue that drug treatment user satisfaction survey methods often produce ‘patient satisfaction’ through the design of the survey instrument, and that this finding is not consistent with the ambivalence and dissatisfaction that consumers report in similar qualitative studies featuring more open-ended questions. Related to this, some qualitative research has identified a dynamic in which consumers express general satisfaction with healthcare services at the same time as recounting many significant shortcomings including insufficient access, excessive waiting times and explicit experiences of discrimination (e.g. Lea, Sheridan, & Winstock, 2008; Madden et al., 2008). Teasing out the complexities of these findings and research methods is key to understanding the healthcare expectations and experiences of people who consume drugs (Madden et al., 2008).

Research also suggests that consumers desire the same basic standards of care taken for granted by other members of the community. For example, Drumm et al. (2003) report that people who inject drugs desire personable, knowledgeable health professionals who are caring. Extending this finding, Neale, Sheard, and Tompkins (2007) note that while people who consume drugs are often hesitant to criticise services on which they rely, many express a desire for less judgemental, more empathetic care from health professionals. Consistent with these findings, more recent studies of consumer expectations and preferences have reported a desire for treatment choice, holistic care (Braden et al., 2011), and access to healthcare professionals who are knowledgeable about drug consumption, and able to provide non-judgemental care directed at overall health and well-being (Press, Zornberg, Geller, Carrese, & Fingerhood, 2016).

In sum, research suggests that the discrimination produced by stigma is a powerful impediment to healthcare access for people who consume drugs. Our research builds on these studies in three ways: (1) by offering a detailed, qualitative analysis of how drug-related stigma shapes the healthcare expectations of this group of consumers, affecting their sense of entitlement to quality care; (2) by examining how stigma operates not only through overt or even subtle discrimination but also through experiences understood as positive encounters; and (3) by drawing these issues together to argue that by rationing public health resources, stigma positions people who consume alcohol and other drugs as illegitimate consumers of health services, constituting any form of healthcare as warranting gratitude.

Approach

As noted above, our analysis applies Fraser et al.’s (2017) conceptualisation of addiction stigma as a politically productive or performative process. Increasingly applied in empirical research on alcohol and other drug-related stigma (e.g. Buchman, Leece, & Orkin, 2017; Rance, Lafferty, & Treloar, 2018; Seear, Lancaster, & Ritter, 2017), researchers have yet to draw out its implications for understanding the healthcare expectations of people who consume drugs. Fraser et al. (2017) build on Erving Goffman’s (1963) classic work on stigma but extend the focus beyond interpersonal encounters and the management of stigmatised identities to consider the political implications of stigma. For Fraser et al. (2017), the widespread and ongoing stigmatisation of people who consume drugs suggests the need for an analysis that does not naturalise stigma but instead considers the social processes through which it operates and importantly, what it achieves socially and politically. As the authors explain, ‘Given the continuing ubiquity of addiction stigma despite efforts to reduce it [… it is] productive to ask what this stigmatisation achieves, given its place in the seemingly unremitting engine of modernity.’ (Fraser et al., 2017, p. 199, original emphasis)

This approach sees stigma as a ‘process of social production’ (p. 195), and stresses that it should not be understood as composed solely of individual attitudes, beliefs, effects or even discriminatory actions, but as a mechanism of social organisation that shapes important public institutions such as healthcare services and by extension, the experiences of those who access them. Within this approach, discrimination is one possible enactment of stigma: it is made and enabled through stigma. In other words, to experience discrimination is to also experience an effect of stigma. In this sense, discrimination and stigma make each other and this process has political effects.

In approaching stigma as a performatively productive force, rather than a stable marker of difference which informs discriminatory encounters, our approach contrasts with research focussing on discriminatory and stigmatising healthcare encounters of people who consume alcohol and other drugs. For example, research on ‘provider-based’ stigma generally analyses overt ‘prejudice or discrimination voiced or exercised […] by occupational groups designated to provide assistance to stigmatized groups’ (Pescosolido & Martin, 2015, p. 92) and investigates how these experiences can impede healthcare access. In contrast, by applying Fraser et al.’s (2017) approach, we broaden the analytical lens to consider how stigma operates through accounts of positive healthcare experiences (rather than primarily negative ones) and in doing so, how it performatively produces legitimate and illegitimate healthcare subjects. This is an orientation that shifts the focus from what stigma is to what it does for those who are its subjects (see also Rance et al., 2018). It invites consideration of the ways in which stigma operates to position certain people as productive and deserving of limited healthcare resources, while designating others as unproductive and less deserving or even undeserving. Approaching stigma as a socially productive process allows us to expand the focus of our research beyond individual conduct or explicit discrimination as sources and examples of stigma, and consider instead the social dynamics of stigma in the health system in terms of how it differentially positions people who consume drugs as less deserving (or undeserving of) care, in turn shaping their expectations and experiences of healthcare.

Method¹

The article draws on data from 20 in-depth, qualitative interviews conducted between December 2018 and March 2019 as part of an Australian study on experiences of stigma in healthcare. The study was commissioned by a Local Health District seeking to investigate primary healthcare access for recent consumers of their inpatient withdrawal management service and was approved by the relevant Local Health District Research and Ethics Office (Local Project Number: HE18/205).

The service is an inpatient withdrawal management unit located in the Australian state of New South Wales. The health district of this service is characterised by higher levels of alcohol and other drug consumption and related healthcare demand than other health districts. Clients access the service via several mechanisms:

• Self-referral

• Referral by other local health professionals

• Other referral pathways such as treatment mandated by the Court

The service prioritises people with alcohol and other drug consumption-related issues that require medical/nursing observation and intervention. Other clients may be admitted for a variety of complicating issues as well, or to interrupt a period of harmful alcohol and other drug consumption. The unit also accepts people diagnosed with opioid dependence, for which the main form of treatment is usually medication-assisted treatment with methadone or Suboxone®, and referral to an outpatient program. The service only accepts people aged between 18 and 70, and does not admit women who are pregnant. Finally, the unit does not accept seriously ill people due to a lack of medical cover after hours.

The study employed a purposive recruitment strategy to maximise diversity across gender, ethnicity, age and primary drug consumed. All participants had attended an inpatient withdrawal management service within the last 12 months. While a formal diagnosis of ‘addiction’ or dependence is not required for admission, the majority of participants framed their alcohol or other drug consumption in these terms, or reported a pattern of consumption that would qualify them for a diagnosis of ‘substance use disorder’ or ‘dependence syndrome’, in the Diagnostic and Statistical Manual (DSM-5) (American Psychiatric Association, 2013) and the International Classification of Diseases (ICD-10) (World Health Organisation, 1992). Recruitment was managed with the help of staff in the relevant service. Staff were encouraged to notify potential participants about the study by circulating a call for volunteers to clients exiting or soon to exit the service. Potential participants then contacted the first author by telephone who screened them for eligibility and to ensure diversity in the dataset. Other potential participants contacted the research team after hearing about the study through word of mouth.

All participants provided informed written consent prior to interview. Interviews were conducted by the fifth author and lasted between 15 and 75 min. Each interview explored experiences with alcohol and other drug consumption, health-related issues, views on different healthcare services, positive and negative experiences with healthcare, experiences of stigma, and plans for the future. As the project was developed to investigate access to primary healthcare, rather than specialist services such as alcohol and other drug-specific treatment, the interviews reflect this focus on primary healthcare access. The interview schedule was developed by the investigators and subsequently revised using an iterative inductive approach during later rounds of recruitment as new issues emerged. The interviews were digitally recorded and professionally transcribed verbatim. To protect participant identities, each was assigned a pseudonym and all identifying details were removed from the transcripts. Consistent with accepted practice in Australian alcohol and other drug research, participants were reimbursed AUD$50 for their time and contribution to research (Fry & Dwyer, 2001).

The de-identified transcripts were entered into NVivo12 qualitative data management software. The data were coded during recruitment using an iterative inductive approach in which a list of codes was developed based on themes emerging from the data, the research literature, and the aims of the project. The interview data were analysed using the inductive constant comparison method (Seale, 1999). The first author conducted an initial coding of the data and presented this to the third author as the Project Lead. The first author drew on her feedback in another round of analysis, presented this to the research team and subsequently conducted another round of analysis informed by team feedback, including diverging interpretations. Finally, the first author conducted a third round of analysis to develop an article draft which was then revised to address the input of all authors.

Analysis

In the analysis that follows we explore how stigma shapes understandings of quality healthcare by addressing two key themes: (1) stigmatising healthcare encounters; and (2) basic care positioned as exceptional. We argue that people who consume alcohol and other drugs do not have sufficiently consistent experiences of quality care for these to become routine. Moreover, we suggest that this dynamic reproduces unequal access to quality care by positioning people who consume alcohol and other drugs as outside the expected purview of public health.

Stigmatising healthcare encounters

In order to contextualise the positive accounts of healthcare we analyse later in the article, we begin with an analysis of participants’ descriptions of overt discrimination. Consistent with the extensive literature on the pervasiveness of stigma in the health system, many of those interviewed described experiences in which hospital staff and general practitioners (GPs) repeatedly treated them rudely and unprofessionally, and in some cases this discouraged them from seeking further medical care. Angela’s (F, 60, alcohol) account of attempting to access a mental health service in a public hospital is illustrative of the kind of experiences that many of our participants recounted (all quotations are accompanied by information on gender, age and main drug consumed, e.g. Angela [F, 60, alcohol]):

[Some staff] treat you like you’re just nothing. I felt that’s the way. Some of the nurses were really good, but some of them were really mean, you know […] The way they speak to you, you know, like you’re less than nothing [it’s] terrible. Terrible […] it had a bad effect on me.

Elaborating on these experiences, Angela adds that they affected her alcohol and cannabis consumption and importantly, given our concern with healthcare access, stopped her attending the hospital:

Well, I haven’t been back there for a while now. Yeah, that’s when I started drinking and smoking pot. It really hit me […] Yeah, it had a bad effect on me […] I just don’t go [to the hospital anymore].

Pippa (F, 36, heroin) reported similarly stigmatising interactions with the health professionals who treated her when she was experiencing a psychotic episode:

When I was first taken to Emergency when I had my psychotic episode, the ambulance drivers said, ‘Why didn’t you catch a bus?’ and my friend tried to explain to them, ‘She’s paranoid schizophrenic, she’s freaking out,’ [and] ‘she can’t catch the bus, like, she needs you to take her’. They were doing my blood pressure and stuff [and] they were really rough with me and things like that. Then, when I got to emergency, they said, ‘You just have to sit in the [crowded waiting room],’ and, like, there were people everywhere […] And then when they took me into the [psychiatric emergency] unit, that’s when they said, like, you know, ‘She’s not well’ […] and they go, ‘Well, she should be taking her medication then’ […] [I felt I was treated like this] because I was a drug addict […] And they knew I was a drug addict because I don’t lie.

Pippa’s account allows for several interpretations of the causes of stigmatisation she articulates. Research indicates that people who consume drugs and experience mental health issues encounter mutually implicated forms of stigma (e.g. Lloyd, 2013). Our data do not allow us to speculate on the thoughts and motivations of the health professionals involved, or straightforwardly distinguish between kinds of stigma (such as that relating to drug use, and to mental illness). Importantly, however, the perception Pippa describes was that the substandard care she received from the paramedics and at the hospital was in response to her consumption of illicit drugs. While it is possible that the hospital staff and paramedics’ intention was simply to advise Pippa that she should take her medication to ensure her wellbeing, Pippa characterises the encounter as ‘rough’ and the professionals as dismissive of her concerns. Ultimately, in Pippa’s eyes, the health professionals she encountered did not manage the complex situation effectively, leaving her feeling stigmatised. When read alongside the other experiences recounted here, her words suggest hospitals are not always welcoming places for people who consume alcohol and other drugs, instead acting as key sites in which stigma, judgement and discrimination are experienced.

Participants’ negative experiences were not confined to public hospitals, Peter (M, 49, methamphetamine), for example, describes feeling ‘judged’ by GPs: ‘private doctors, I find them to be judgemental’. Importantly, he goes on to explain that, as far as possible, he now avoids GPs:

If I have got strategies [for managing stigma from GPs], they’re not real good ones; it’s [to] stay away from them. I only go there if I have to […] So that’s been my strategy […] I only go to the doctor’s if I really, really have to.

In this way, judgemental encounters impede Peter’s access to GPs and increase the likelihood that his health problems will have become more severe when he does seek care. In some cases, concern about the quality of care from GPs were linked to experiences where doctors had questioned their motives for seeking medical attention. Tracey (F, 48, methamphetamine) had recently consulted a GP about her anxiety and sleeping problems, and describes his response when she disclosed her history of methamphetamine-related issues:

I did go and see a doctor […] and I explained to him what was going on. Like, I couldn’t sleep, I was agitated all the time […] and I asked him if there is anything he could prescribe for me. Because I told him my history of ice [crystal methamphetamine] problems, he just looked at me like I just wanted to get off my face on anything that I could grab my hand on, but that was not the case.

Importantly, Tracey had similar experiences with multiple GPs and as she explains, after a similar experience with another GP, she now avoids them altogether:

I went and seen another doctor up here, but they just gave me the same [response]: ‘you just want to get off your face’, and that’s it. I am done with doctors because all they think is that I want to get off my face on tablets, but I don’t.

These accounts suggest that, much like their experiences in public hospitals, participants’ interactions with GPs were often marred by doctors’ apparent suspicion, distrust and judgementalism, making effective therapeutic relationships difficult to establish (Treloar et al., 2016).

To return to Fraser et al.’s (2017) account of stigma as a process of social production, we ask: what does the stigma operating in the health system do? What social effects does it generate both at the level of the individual subject and of the health system? As our participants’ accounts suggest, past experiences and fear of stigma can discourage people who consume drugs from accessing health services, or cause them to delay seeking medical attention. At a material level, this can mean that by the time people seek medical help an initially minor issue may have become serious, possibly even life-threatening. However, the effects of stigma are even more far-reaching and insidious: we suggest that stigma operates to discredit people who consume drugs, denying them legitimacy in the health system (Rhodes, Harris, & Martin, 2013). This is especially concerning given that people who consume drugs may be marginalised and vulnerable, and often have complex and major healthcare needs (Lubman et al., 2016; Manning et al., 2017). In a perverse twist, the persistence of stigma renders already marginalised people undeserving of the healthcare considered standard for other members of the community. In this way, drug consumption stigma operates to bolster the boundaries of legitimate access to the limited resources of public health, protecting access for those not subject to this stigma at the expense of those who are. Further, in limiting the scope of stigmatised individuals to imagine and attempt to access quality care, the stigma analysed here allows for the refiguring of the failings of public health as those of individual choice. When stigmatised patients delay appointments or do not attend them, for example, this may be interpreted as characteristic of patient choice rather than produced by a stigmatising healthcare system (see also Fraser, 2006).

Basic care as exceptional care

While stigmatising experiences were reported by almost all the participants in our study, many also recounted positive experiences, and expressed appreciation and explicit gratitude for non-stigmatising healthcare interactions. Importantly, however, many of the accounts of positive experiences seemed merely to match community standards for basic levels of professional practice. In this way the negative experiences just analysed contextualise the accounts of positive healthcare that appear in this section, suggesting that healthcare that is not characterised by overt discrimination is worthy of mention and praise. In this sense, while many participants have particularly acute and complex health issues, their expectations of healthcare services were very modest. Many presented as exceptionally good forms of treatment that would likely be considered routine – or indeed the minimum – by other members of the community.

Stigma and expectations of healthcare

The most common way in which high quality healthcare was identified was as ‘non-judgemental’. For almost all of our participants, stigmatising experiences were so common that when they did not encounter explicit discrimination they were impressed and grateful. Amelia (F, 34, heroin), for example, described her therapist as ‘excellent’ because he ‘doesn’t judge’:

The therapist. Mate, he’s going to be an excellent, excellent, therapist […] Just the way he interacts. Just the way he talks to people. He doesn’t judge. In this industry, I don’t think there’s any time for judgement.

Pippa (F, 36, heroin), praised her new GP for the same reasons:

[My new GP] listen[s] to me. He doesn’t judge me. He said, ‘I’ve seen it all before,’ you know. He’s not in a position to judge because everyone has problems.

Peter (M, 49, methamphetamine) makes a similar point about his new GP, ‘I don’t know what [I went to see the GP] for, to tell you the truth, the first time I went there, but I found [the GP] friendly and open and not judge … didn’t judge me, you know’. Taken at face value, these accounts could be used to suggest that these participants are indeed receiving excellent healthcare, for example, they do not offer examples of provider-based stigma. However, when stigma is understood not solely as enacted in discriminatory encounters but as shaping how good healthcare is imagined, we can analyse a social process that produces non-judgemental care from health professionals as considered worthy of special mention rather than simply the norm.

Perhaps unsurprisingly, given the pervasiveness of stigma in the health system, these low expectations are also evident in views of what constitutes good healthcare:

[A good service would] just let me be me, because I’m a bit [of an] out there kind of lady […] Yeah, and not be judgemental, you know, not be judgemental. (Angela, F, 60, alcohol)

[Health professionals should] actually listen to the person and check out their problem instead of just looking at them and thinking the worst. (Tracey, F, 48, methamphetamine)

Similarly, Georgie (F, 50, alcohol) characterises her positive experiences with health professionals as ‘lucky’ because they did not ‘look down’ on her when she disclosed her history of injecting drugs:

When I go for a blood test, I say, ‘Look, I’m an ex-IV drug user [so] forget that arm’. I said, ‘if you can’t get there, there’s a good vein in my right foot but I’ve banged my veins out with methadone’. I’m honest […] Most of them [say] ‘thanks for being honest’ and they don’t look down [on me]. I’ve never had someone take blood off me that has looked down on me, and they’ve never said to me, ‘Oh you are hep C positive’ [in a negative way], nothing like that. So, I’ve been quite lucky.

Implicit here is the expectation that disclosing drug consumption when accessing healthcare will lead to discrimination from health professionals. Significantly, Alexa (F, 23, cannabis), Angela (F, 60, alcohol) and Samantha (F, age 37, heroin) were the only participants who offered other qualities that singled out the health professionals they admired as special. Reflecting the general low expectations set by the participants, they described health professionals who ‘listen’ as offering exceptional care.

We can conclude from these accounts that participants’ stigmatising encounters with the health system shape their expectations of healthcare in understandable but concerning ways: non-judgemental encounters are seen as noteworthy examples of good care rather than the bare minimum to be take for granted. This is not to suggest that our participants were tricked or duped into developing unrealistic expectations of care. Rather, it is to emphasise the productive power of routinised experiences of stigma: over time, they accrete to shape understandings and experiences of care in ways that systematically shape the scope for stigmatised individuals to advocate for and access quality care. This is especially concerning in this context as many of those interviewed had complex, chronic healthcare needs that require much more than simply non-judgemental treatment from health professionals who listen (Lubman et al., 2016; Manning et al., 2017).

Routine professional practice as remarkable

Building on our analysis of non-judgemental care as exceptional, we now explore accounts in which participants present other routine professional practice as exceptional. Key practices cited in this context include offering referrals and respecting patient privacy, as the following accounts illustrate:

I find mostly the public sector, like, the hospitals and things that are publicly run, I find them very helpful, very non-judgemental […] Like, if you need phone numbers or referrals or, you know, like, information on different places, they’re more than willing to help you. (Peter, M, 49, methamphetamine)

[Health services have] been very helpful. They’ve always written down numbers and either made phone calls and made appointments for me, and everything like that. You know, I couldn’t be any more thankful. (Leo, M, 43, alcohol)

Leo’s expression of deep gratitude is particularly poignant given that a professional referral is the least one might expect from a healthcare consultation. On the issue of confidentiality, Pippa (F, 36, heroin) explains that the pharmacist who dispenses her opioid pharmacotherapy treatment respects her privacy:

[My pharmacist] doesn’t advertise [that I am being dosed with methadone], like, you know, he does it discreetly. He doesn’t make you stay there and wait until your dose is finished […] He [is] understanding.

As observed in other research, people who consume drugs often encounter stigma when accessing harm reduction services at pharmacies. For example, they can encounter excessive wait times, be deprioritised in queues or required to consume pharmacotherapy in view of other customers thereby announcing their opioid consumption to others (e.g. Fraser & valentine, 2008; Paquette et al., 2018; Simmonds & Coomber, 2009). For Pippa then, even basic respect for her privacy is encountered as particularly good service. Similarly, she also found it noteworthy that her current GP read her patient history before an appointment – a basic standard of care that all patients can expect:

He’s read all my reports and everything, like he went through everything about me before he saw me.

Okay. How did that make you feel?

It made me feel special because I didn’t think doctors did that. But it made me feel special because he took the time to get to know me before [our appointment], so I wouldn’t have to go through all my shit again.

Improving services

Given that most of our participants reported experiencing stigma and discrimination in the health system, we also explored their views on how health services could be improved. Pointing to the poor quality care people who consume drugs often receive, Samantha (F, age 37, heroin) suggests that health services could be improved if they acknowledged clients’ diverse experiences and avoided assumptions about common patterns of drug consumption:

[Health services could be improved by] realising and remembering that none of us are the same. We’re all different. We all come from different walks of life. We all have different drug use, even though sometimes it can be the same drug, or we might use it the same way, but our lives are always different, we’re mapped out differently.

Like Samantha, Claire (F, 25, methamphetamine) also makes a very modest suggestion for how to improve services:

[Health services should] stop treating [people] like they are addicts, stop […] looking down on them […] treat them normally. (Claire, F, 25, methamphetamine)

Significantly, Samantha’s argument that services could be improved by treating patients as individuals and Claire’s call for services not to ‘look down’ on patients who consume drugs, dynamics that should be routine, suggest that they have not consistently experienced this very basic level of care. Read alongside the expressed desire for non-judgemental care, it is possible to infer from participants’ accounts that most had not sufficiently consistent experiences of quality care to take it for granted.

Again, returning to Fraser et al.’s (2017) approach to stigma, we ask: what does stigma inhering in the health system do? Viewed through the lens of stigma as a performative process, our participants’ depictions of basic non-judgemental practice and other routine professional practice as exceptional is best understood as a political effect of stigma. Mirroring other research that identifies stigma as an impediment to healthcare access such as alcohol and other drug treatment uptake and completion (e.g. Brener et al., 2010; Keyes et al., 2010; Treloar, Rance, & Backmund, 2013), our analysis suggests that drug- and addiction-related stigma diminishes affected individuals’ capacity to access the care they need. However, we seek to push this analysis one step further to argue that stigma does not solely work to discourage service users from accessing the healthcare to which they are entitled. That is, stigma is not only enacted through the kinds of discriminatory encounters analysed in much research on healthcare stigma. Rather, stigma shapes understandings of acceptable and quality healthcare in ways that make it not only less accessible but less imaginable (Fraser et al., 2017). In this way, when stigma is enacted in contexts characterised by scarce resources and time-poor health professionals, it effectively manages access to any level of healthcare, and constitutes care that does not explicitly discriminate, as noteworthy and deserving of gratitude, rather than as a basic entitlement. In this process, our participants are positioned outside the realms of inclusion and entitlement to the resources and services of public health. Access to these services instead becomes a case of ‘inclusion by exception rather than expectation’ (Rhodes et al., 2013, p. 1036).

Conclusion

While it is well-established that the stigma experienced by people who consume drugs acts as a barrier to healthcare, research has yet to explore in detail how this shapes expectations and understandings of what constitutes good or even sufficient healthcare, and how this exclusion serves institutional dynamics in public settings characterised by scarcity and limited resources. Our analysis has sought to respond to this by approaching stigma as a politically productive or performative process (Fraser et al., 2017). In this way, our analysis contrasts with much stigma research which often focusses on the overt or subtle discriminatory actions of some healthcare providers. Instead, we have explored what stigma does in terms of shaping expectations and understandings of what constitutes good healthcare.

As we have seen, stigma operates to materialise the health concerns of people who consume drugs as less important and deserving of attention than the health of others (the ‘normals’ as Goffman [1963] puts it). Moreover, the persistence of stigma in the health system seems to render experiences of basic, non-judgemental or non-discriminatory care worthy of mention for people who consume drugs. Indeed, such experiences come to be viewed as examples of particularly good practice. In making this argument we are not suggesting our participants have been duped into thinking inadequate professional practice is excellent. Rather, we are seeking to highlight the far-reaching and pernicious effects of stigma in limiting expectations of healthcare, allowing basic or substandard care to become remarkable. This is a particularly significant political effect of drug-related stigma as it points to the ways in which people who consume drugs continue to be relegated to the status of the abject other, denied legitimacy and the basic right to quality healthcare. In this sense, Madden et al.’s (2008) argument that drug consumer satisfaction with service delivery must be understood in relation to their expectations and sense of entitlement is an important one. To this we would add that stigma may also work to discourage active engagement in healthcare. By positioning people who consume drugs and their health concerns as outside the expected purview of public health, as an extra burden on the system, stigma operates to generate low expectations of healthcare and reinforce a low sense of entitlement to quality care. In turn, this process positions people who consume alcohol and other drugs as illegitimate subjects who should be grateful for whatever limited resources and care they receive.

In closing, we reflect on the implications of our analysis for alcohol and other drug research and healthcare professional practice. In relation to research, we suggest that an understanding of the performative effects of stigma needs to inform the design of research on healthcare experiences and expectations of people who consume alcohol and other drugs. The issue of stigma must be built into interview questions and survey instruments to ensure it is not filtered out through research methods. Questions need to be designed carefully, and responses read perspicaciously and without naivety about the role of stigma in producing expectations. Without this critical engagement, we risk producing accounts of healthcare satisfaction that do not properly account for the stigmatising social dynamics that co-produce them (see also Trujols et al., 2014). In terms of improving professional practice, fostering trust and non-judgemental, empathetic relationships between consumers and health professionals is an ongoing project requiring consistent work in order to be established and maintained. To build such relationships, healthcare providers and services should seek to explicitly demonstrate trust and hospitality in all encounters (Treloar et al., 2016). Indeed, such expectations could be codified into professional standards for healthcare professionals. Without dedicated, sustained efforts to reshape healthcare encounters for people who consume alcohol and other drugs, stigma and the barriers it enacts will continue to be reproduced by the very services designed to offer them care.

Acknowledgements

The authors thank the interview participants for generously sharing their experiences with the research team. They would also like to thank the anonymous reviewers whose input helped strengthen aspects of the article. Interviews were conducted by Annie Madden.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Additional information

Funding

This work was supported by South Western Sydney Local Health District Drug Health Services Local Project Number: HE18/205. The National Drug Research Institute is supported by core funding from the Australian Government under the Drug and Alcohol Program and also receives significant funding from Curtin University.

Notes

1 This background section is adapted from: Fraser et al. (2020).

Appendix

Table of participants (N=20)

Table