Chapter Six: The Medical Encounter

To the typical physician, my illness is a routine incident in his rounds, while for me it is the crisis of my life. I would feel better if I had a doctor who at least perceived this incongruity …Without some such recognition; I am nothing but my illness. (Broyard 1992:43-45)

This chapter focuses on participants’ experiences of their interactions with medical professionals. It appears that the stigmatised and ambiguous nature of hepatitis C often made for an unsatisfactory and harrowing encounter. Participants in this study consistently articulated a desire for information regarding the maintenance of their health, and a frustration with the inability of medical professionals to provide this information. Consequently they looked elsewhere for guidance, and implemented practices such as dietary changes into their lives. Dissatisfaction with a one-dimensional focus on the liver at the expense of the whole person frequently saw participants discontinuing medical visits. An unacceptably high proportion of individuals received their hepatitis C diagnosis over the phone, with the majority subject to discriminatory treatment. While the scientific biomedical model purports itself to be ‘objective’ and thus above moral judgements the experiences of these research participants tell a very different story.

While chronic illness is increasingly endemic in the postmodern era, the primary western medical encounter is still based on the biomedical model of treating acute illness. This model of care fits within the socially affirmed restitution narrative; that is “yesterday I was healthy, today I am sick, but tomorrow I’ll be healthy again” (Frank 1995:78). Here the emphasis is on treatment and ‘cure’; the focus is at the disease loci, rather than the experiential person and their social networks. For the chronically ill the restitution narrative is a cruel irony, as they can not necessarily hope to get well, or be ‘cured’. More beneficial for the chronically ill would be social supports and information regarding “how to live a good life while being ill” (Frank 195:156 emphasis in original):
Perhaps most fundamental is the nature of the system itself; it is an illness care system founded in profits. What chronically ill people need is a health care system based upon services - diverse services. They need to preserve and to enforce their current health status. The system reinforces sickness over measures to maintain health during chronic illness. (Charmaz 1997:263 emphasis in original)
Discrimination: ‘hateful’ patients.
General practice remains a particularly hostile environment for many people who [have], or are assumed to have, a history of injecting drug use. Similarly, gastroenterology departments and liver clinics remain opposed to fair and equal treatment for people who inject. This most commonly results in reduced treatment options and inadequate quality of care, particularly in relation to pain relief. (Professor Kidd in ADB of NSW 2001:37)

Australian social research on hepatitis C reports prevalent discrimination within the health care sector (Gifford 2003, Hopwood and Treloar 2003, Day et al 2003, Loveday 2003, ADB of NSW 2001, Cope 2001, Crofts et al 1997). One probable reason for this is that people with hepatitis C are more inclined to disclose their status in a medical setting, either through a perceived obligation or real need (Day et al 2003, Loveday 2003). While there is no legal requirement to disclose hepatitis C status in health care settings (Loveday 2003:52, ADB of NSW 2001) this may not be widely recognised. Predominant in this study and others (Hopwood and Treloar 2003) is the finding that individuals with hepatitis C feel a moral obligation to disclose. A felt responsibility to disclose primarily arises out of concern for the protection of others, especially the health care worker. Hopwood and Treloar posit that this moral obligation stems from the individuals seeing themselves as involved in a “therapeutic relationship”: a partnership of trust and care between the patient and the medical practitioner (Hopwood and Treloar 2003:64).

If respect is not felt to be reciprocated by the medical practitioner then the ‘therapeutic relationship’ can deteriorate, and with this the responsibility to disclose. Nineteen out of the twenty participants in this study reported that they always disclosed in health care settings. John however, chose not to because of a previous discriminatory experience:
I went to the dentist, I had a bit of work to be done, and the dentist said, on the form they asked about hepatitis C and HIV, so I ticked hepatitis C yes, and she ah changed my booking to, she goes away, she says “ah hepatitis C positive”, she goes away and has a consultation with somebody else, comes back to me then changes my booking from the morning booking to the last one in the evening, so as if any of the stuff, if any of the tools got blood on them then I’d be the last one, and they would be able to be sterilised over night. Something like that she said …That is crap … so all of that palaver; now I just tick no. (John)
Incidences such as this are common in the participants’ narratives, with dentists often cited as refusing to treat or allocating the last appointment of the day. John is right: there was no need for the dentist to act in this manner. Dentists, medical practitioners and other professionals who come into contact with bodily products (tattooists etc) are required to follow universal infection controls. As many people with hepatitis C and other infectious diseases are unaware of their condition, disclosure cannot and must not be relied upon for implementation of infection control (Hopwood and Treloar 2003, ADB of NSW 2001).

A perceived moral obligation to disclose precludes the ability for people with hepatitis C to be strategic in disclosure, and thus enact agency in protecting the self from possible discrimination. This, coupled with the power imbalance inherent in the medical encounter, renders people with hepatitis C more vulnerable to and potentially more adversely affected by discrimination. Incidents of discrimination in health care settings have been found to be doubly distressing (Crofts et al 1997:89), possibly because of a perceived breakdown in the ‘therapeutic relationship’. The view that hepatitis C is a ‘junkies disease’ (Krug 1995) lies at the core of such discrimination. For, although medicine claims an objective and altruistic basis, it appears to be suffused with the moral values of its practitioners (Lupton 2003:134):
Despite evidence that treatment for drug abuse is effective, many physicians view addicted patients as incurable and morally culpable. As with other ‘hateful’ patients physicians may come to view addicts as manipulative, unmotivated and undeserving of care ... such attitudes contribute to the unwarranted withholding of treatment and to mutually unsatisfactory patient-physician interactions. (O'Connor et al. 1994, in Edlin et al. 2001:213).
Richard, a practicing GP, reiterates this medical distain for drug addicts:
I am amazed how little my colleagues know about it [HCV], and I wonder if that is because it a bit of an addict disease and they are not so interested. Doctors generally don’t want addicts in their practice, and I don’t want using addicts in my practice, I tried being a methadone prescribing doctor for a while and the scumbags that walked in (laughs), the nurses, everyone was so relieved when I stopped doing it. (Richard)

Richard is a GP and ex-intravenous drug user who has hepatitis C. Some of his patients have hepatitis C, and having recently gone through the interferon treatment himself, he has experienced being both a patient and doctor. While Richard reports that his colleagues don’t want addicts in their practices, he himself portrays a similar attitude, speaking of addicts as ‘scumbags’. Similarly he is intolerant towards his hepatitis C patients who present as symptomatic and unable to work:
I mean there is this whole question of how much it causes symptoms or not, some people swear it makes them tired, and achy all the time, and that must be hard if that is the truth … I do get a bit annoyed, I have some patients who do make it their excuse for not working; they don’t do anything, and they come in every two months: “fill out my sickness benefit, I’ve got hepatitis C, I can’t work I am too tired to work”, things like that … Maybe I am being unfair, maybe some people do have it that badly, I suspect not. (Richard).
This attitude, of ‘just get over it’ and ‘get working’, is emblematic of one indoctrinated in the medical system. Here, training is based on the treatment of acute illness engendering a suspicion of ill defined and ongoing symptoms (Lupton 2003, Kleinman 1988). Medicine as an “institution of normative coercion” (Turner 2003:271) subsumes individual disparities to disease commonalities. With a disease such as hepatitis C which has a broad spectrum of effects, this approach is not helpful. Patients need to have their subjective experience acknowledged, so they can fully partake in the therapeutic relationship:
People whose reality is denied can remain recipients of treatments and services, but they cannot be participants in empathic relations of care. (Frank 1995:109)

The discriminatory attitude Richard reports his colleagues as having is consistently articulated by the participants of this study. While none of them were currently using intravenous drugs and four never had, many a time they were assumed to be using by doctors and treated as a ‘junkie’:
It was just a label that I could not shake, and those doctors would just not let me shake it, they would not, they insisted I was a drug addict, and no, they got it all wrong. And I paid quite a price for that actually; they were prepared to let me suffer through it quite a bit. (Ruby)
For some stigma can become so internalised that discrimination is expected, or not recognised as such when experienced:
Even my dentist is wonderful, he’s great, he’ll have me at the last appointment, and we all understand that’s why, yeah no he’s cool, and that’s what [dentist] does he says oh we’ll just get you in on the last appointment, and do it usually on a Friday, and then they can do a big clean up, but it is funny because I go in there and everything is wrapped up in bloody glad wrap. (Lucy)
Lucy is an ex-intravenous drug user, which may be a factor in her apparent acceptance of such behaviour. To be seen as a ‘junkie’ engenders such pervasive discrimination that sub-standard treatment can become normalised (Day et al 2003:320).

Although hepatitis C does not impact upon pregnancy outcomes or cause complications (Davala and Riely 2002:297), several women received differential treatment during their maternity care. The requirement that Lucy was to put her breast milk in biohazard bags was so outrageous that not even she accepted it:
I’ll get very upset over the ignorance of people, and the narrow-mindedness. Get this, I had to put my breast milk in biohazard bags … this is while Max is in intensive care, and I was thinking these other mothers are going to wonder what’s going on here, and I’m going to have this big uproar, that’s what I was scared of, you know. Um, but they made such a big deal over it. (Lucy)
Justine also experienced negative treatment during her pregnancy. She was constantly pressured to have a caesarean which she refused, aware that the risk of passing hepatitis C on through childbirth was negligible:
When I was pregnant with Sam it was quite full on yeah, because um, I was put into the drug care unit in the hospital anyway, and they test you for AIDS and hepatitis C, but it is treated like an AIDS thing and they really wanted me to have a caesarean to minimise the risks of my baby contracting it which is very rare; it was quite a bit of pressure at that point, yeah there was a stigma attached to it, especially in that medical world. (Justine)
For participants, especially at the vulnerable time of childbirth, this treatment had a dehumanising effect. The body, compartmentalised, is treated as a machine; as if its parts could be effectively separated out from the emotional reality of the patient.
Biomedicine: “fixing the machine”.
Diagnosis and treatment seek to address the observed lesion, the quantified measurement, more than a person living in pain. The patients own experience and subjective voice become inessential to the medical encounter. The experience many patients have of being ignored as a person, treated like a “thing” is not then just a matter of isolated insensitivity. It is symptomatic of a metaphysical position that has oriented modern medicine from the start. When the patient is not treated as a living, suffering being, compliance is reduced, evidence is overlooked, inappropriate treatments are prescribed, genuine healing gives way to “fixing the machine”.
(Leder 1991:147-8)

There is a wealth of writing on the dehumanising nature of the western medical system, particularly in its dealings with the chronically ill (Lupton 2003, Crossley 2003, Carson 2002, Lorber 2000, Little et al 1998, Charmaz 1997, Wendell 1996, Frank 1995, Leder 1991, Hunter 1991, Kleinman 1988, 1995, Illich 1976). A major limitation of the biomedical model is seen to be its failure to assess adequately the actual social environment in which illness is experienced (Lorber 2000, Krug and Hepworth 1999a, Charmaz 1997, Kleinman 1988) and to understand the embodied experience of illness (Carson 2002, Little et al 1998, Frank 1995, Kleinman 1988). In relation to hepatitis C, criticism has been on the medical systems disparaging of symptoms as ‘psychosomatic’ (Hanssens 1995) and its focus on the physical at the expense of the emotional and social (Krug and Hepworth 1999a).

The dominance of the physical is evident in the participant’s descriptions of their encounters with physicians, where the body is compartmentalised and all else subsumed to the liver:
Western medicine as practiced now, for these subspecialties is a very technocratic, it is, it’s very much about scans, biopsies, livers and drugs and tests. And the patient is the necessary evil that sort of accompanies it. And I found that with the guy running it, he was very much interested in me as a liver. (Richard)
And the scary things were the medical profession, because of their clinical kind of model, and it being under gastroenterology that they focus on it being a liver ... So it was around the horror stories of your dying of liver cancer and liver transplants. Which is inadequate and very biased … [There needs to be] other information available around the promotion of wellness. (Miranda)
Miranda’s desire for information around the “promotion of wellness” is reiterated time and time again by the participants in this study. Rose, Sarah, Zac and Robert all discontinued hospital visits, disappointed at being offered nothing but interferon. As Rose says “there is none of that sort of practical life stuff”.

This leads to what Frank posits as central concern for members of the ‘remission society’: the question of “how to live a good life while being ill” (Frank 1995:156). While a holistic concern is to the fore in participants narratives, this is discouraged by medical insistence on the efficacy of pharmacology above all else:
I know the medical profession believes that diet makes not a jot of difference and no alternative medications make a jot of difference. (Richard)
In the past two decades calls for physicians to attend to the “whole patient” have not been answered with notable success … “holistic medicine” continues to be the object of scorn. (Hunter 1991:xxii)
The experience of participants in this study does however suggest that diet and alternative treatments make a difference. For fifteen of the twenty participants to make significant changes to their diet and stick to them, indicates that the diet has a part to play in alleviating certain symptoms associated with the disease. None of the participants were given any advice on diet by a medical professional but instead made these changes through trail and error, and from sourcing information from the Hepatitis C Resource Centre, the internet, books and peers. While neither diet nor alternative treatments are expected to ‘cure’ hepatitis C they can make a significant difference to the individuals quality of life. Physicians’ perceived indifference to the patient’s ability to ‘live a good life while being ill’ can create a sense of psychological separation between the doctor and patient.
Doctor and patient: “psychological abandonment”.
How can a doctor presume to cure a patient if he knows nothing about his soul, his personality, his character disorders? It is all part of it. (Broyard 1991: 47)

The separation between doctor and patient has been described as “pathological” (Broyard 1992:55), as alienating the patient from their own experience (Katz 1984, Leder 1990, Wendell 1996, Carson 2002) and as doing a disservice to both doctor and patient (Kleinman 1988, Broyard 1992). Biomedicines focus on the technological and the body as a machine (Kleinman 1988, Leder 1990, Hunter 1991, Crossley 2003) turns the clinician’s attention away from the experiential meaning of illness for the patient. This “disables the healer and disempowers the chronically ill” (Kleinman 1988:9). Katz, a physician, uses the metaphor of silence to characterise the interaction of doctor and patient. He feels that the doctor’s reticence is tantamount to “psychological abandonment” (Katz 1984: 208).

All of the above writers call for increased dialogue in the medical encounter and for recognition of the patient in their entirety, not just as a vector of disease. While this may seem utopian in the face of stretched medical budgets and diminished consultation time frames, recognition and respect are fundamental to a successful relationship. Respectful dialogue with a patient and awareness of their social context would aid treatment success and compliance, proving cost effective in the long run. For example, the alienating medical behaviour that Elisabeth describes led her to discontinue consultations with the private gastroenterologist in question:
When you feel like you are a piece of meat being shoved around by your GP, the gastroenterologist, you are just a number; you are not a person with feelings or thoughts or anything else in fact. When I first saw [gastroenterologist] I felt so roughed up by him I definitely felt like a number and not a name. (Elisabeth)
If Elisabeth had been treated more humanely she would have stuck with the physician, and in feeling more supported, may not have turned down his offer of interferon treatment.

Little et al. (1998) use the notion of liminality to provide insight into the subjective experience of illness. Liminality, being on the threshold, in limbo, is similar to Frank’s concept of the remission society, where you are neither sick nor well. The liminal experience is that of existing in a gulf, a no-mans land, much as Elisabeth describes:
There are no managing levels in there at all. There is a huge area of, just a huge gulf, a ravine of questions that I’m sure every sufferer has. And at this point here you have got the GP and at the other end you have got the surgeon, when you are wheeled in for a liver transplant. And there is this gulf between the two, and at the minute I am living in this gulf, like you are right now. What you discover is as great as your own curiosity I guess, and I don’t think it should have to be an individual search, because it just takes so much time, and there are times when you get worn out and depressed. (Elisabeth)
The gulf that Elisabeth describes, a lack of attention to the whole person, is also a product of medical specialisation in which the patient is divided up to be dealt with by different practitioners. This compartmentalisation is evident in Richards comment on the contra-indications of depression and interferon:
Well their response would be, if it is a real problem call the psychiatric liaison person and they can deal with it. You will find that in these sub-specialties that they don’t want to deal with it, as a rule, they want to deal with the liver, that’s their input. If there is a psychiatric input call in the psychiatric registrar, and refer him into that system. (Richard)

The division of medicine into ‘sub-specialities’ means that for some participants it took a long time before they received an accurate diagnosis of what was actually wrong with them. Sarah and Miranda in particular spoke of having their illness experiences invalidated by medical professionals before they eventually received a diagnosis of hepatitis C. Physicians pre-diagnosis assumptions of ‘malingering’ are unfortunately common (Loveday 2003:52). While the phenomenon of medicalisation (Illich 1976) has received much scholarly attention, Wendell writes that:
Less attention has been paid to the dangers of having physical experiences of illness or disability ignored or invalidated by medicine in societies where medicine has great cognitive and social authority. (Wendell 1996:130)
The social authority of medicine is evident in Sarah’s narrative. When physicians denied the reality of her illness, Sarah found it hard to continue with life as she knew it:
And the doctor will say well you know, just keep going and you’re not all that sick. So it was quite extreme really, and I had felt that I had lost in the face of all that, any desire to be a mother, a desire to be to be accepted and fit in, and that it had over ridden my instincts. Plus the fact that I would go to the doctor feeling very, very ill and come back with nothing. (Sarah)
Being diagnosed with hepatitis C was almost a relief for Sarah. After years of invalidating experiences with the medical profession, at last the problem had a name.
Diagnosis: “they told me over the phone.”
The majority of participants (18) received their diagnosis of hepatitis C between 1990 and 2002. Two participants received a diagnosis of non-A non-B hepatitis before 1989, the year the virus was identified as hepatitis C. Only nine participants were informed of their hepatitis C status in a face to face consultation with a doctor. Six participants were informed over the phone, two told by a nurse ‘in passing’; one, a doctor, tested and diagnosed himself; one was told through a look-back program and the other was unclear. Participants’ reactions to diagnosis include that of feeling ‘devastated’, ‘numb’, ‘unclean’, and ‘depressed’. Two participants expressed that they expected to have hepatitis C, and were just relieved that they weren’t HIV positive. This reaction is not uncommon among intravenous drug users. A conservative estimate is that 42-84% of intravenous drug users in New Zealand have hepatitis C (MoH 2002:11); hence the disease has become relatively normalised within this population.

The majority of participants who were informed of their hepatitis C status over the phone received their diagnosis in the last decade, in the years from 1995 to 1999, with one in 1990. This method of diagnosis is insensitive and negligent. It does not allow for adequate post diagnosis consultation or for the potentially fragile mental state a person may be in upon hearing such news. Elizabeth describes receiving this information while driving, not a safe or desirable situation in which to receive a major medical diagnosis:
As I was driving north about five years ago on my Christmas holiday she [GP] is on the phone telling me I have got hepatitis C, don’t share your toothbrush, don’t drink any champagne at New Years Eve, and I’m thinking oh my god I’m going to die. And I was stuck up somewhere in Northland for about two weeks trying to have a holiday, and I was just so stressed, it started from day one. From the minute they told me there was some sort of stress and uncertainty and feeling of unclean, unclean. (Elisabeth)
Zac makes a comparison between his phone diagnosis of hepatitis C and the strict procedures in place for diagnosis of HIV:
I was devastated … I found out that I’d got it and I thought oh my, my life is never going to be quite the same again, you can actually die from this, and I know that not many people do die, but if you compare it to HIV which is socially topical, your results aren’t released to you, until you get to see the doctor in person. Yet with hepatitis C I was told a period of time after them knowing, if it was HIV …You’d be called in immediately, but because it’s hepatitis C, they obviously didn’t prioritise it, and left it until I rang back, and if I’d never rung back then I would never have known …Yes they told me over the phone. (Zac)

The blasé manner in which Zac received his diagnosis was common, with the majority of participants reporting receiving no, negligible or confusing information about what it meant to have hepatitis C. The lack of information received at diagnosis perpetuates unnecessary fears of hepatitis C being a death sentence, with some participants actually informed that they would only have so long to live:
I was gutted … when I very first found out, the first couple of weeks I just didn’t think to much of it, but the reality was that I thought that I was going to die, I just thought I was on borrowed time, that I was buggered. I became very depressed, it was awful. It was traumatic. The more information we got didn’t make it any better either. It was grim you know, I was told that I, well eight years ago I was told, well after they did the biopsy, I was told I had about five years [to live]. (Ruby)
I had to go to the health department and be interviewed by some fucking bitch. So I popped along, my normal self, no qualms about it, hey I’ve got it, just deal with it, and she sat me down, and … she asked me if I was a prostitute, if I had been a prostitute, a drug addict … then at the end I sort of said to her “should I be worried about this?” and she said “well yes” and I said “what am I going to die?” and she said “yes”, and I said “well how long have I got?” and she said “20 years”… And then for the next six months I was just joking with my family, but it was just hurting them, I was sort of saying “Oh well I’ve only got 17 years and six months and three days to go now”, ‘cos it really screwed up my head, thinking when did I get it, when am I going to die then. (Rachel)
A majority of medical practitioners are ill-informed about hepatitis C (Krug and Hepworth 1999a:307). However, it would be preferable for physicians’ to admit their ignorance rather than causing unnecessary distress with false pronouncements on life expectancy.

A lack of information from the medical profession meant that most participants became researchers of their disease; turning to the internet, books and peers for information. A popular text is Matthew Dolan’s The Hepatitis C Handbook (1999), which Miranda believes that doctors also need to peruse:
I haven’t done much reading but I think I could tell them a thing or two. Because I have a very inquiring mind and when you are the piggy, and you are the one that’s got to live your life inside this diagnosis you tend to absorb stuff … So when it comes to talking about these issues with my GP now, I don’t think he has even read The Hepatitis C Handbook. Here he is telling me what to do and I’m saying well get the research on board first boy. Have a look around you. (Miranda)
As much of the information collected is informed by a medical discourse, this encourages a medicalising of the self (Krug 1995). The taking on and placing of oneself in a medical framework is apparent in the participants’ awareness of their liver function counts, which are seen as a major (if unreliable) marker of the disease process. Only one of the twenty participants I asked was unaware of her ALT (alanine aminotransferase1) levels, and several asked me what mine were, a common comparison between people with hepatitis C.

Conclusion
Kleinman believes that a doctors role should be that of “empathetic witnessing” (Kleinman 1988) and similarly Frank calls for a “renewal of generosity” in the doctor patient relationship (Frank 2004). While these may seem to be utopian wishes the reality is that for any relationship to be successful it needs to be based on a foundation of mutual respect and recognition. The participants in this study express simple desires. These involve the ability to be part of a proper “therapeutic relationship”, that is to have their ailments, experiences and fears taken seriously and addressed. Differential treatment on the basis of moral judgement is not acceptable. Such discrimination only serves to drive individuals with hepatitis C and other stigmatised diseases away from accessing medical services. For conditions such as hepatitis C with no definitive ‘cure’ there needs to be renewed focus on helping patients “live a good life while being ill”. Necessary for the attainment of this goal are ongoing models of care which take into account the experiential nature of illness and the social context of the individual.