Conceptual background
Given the lack of previous work in the area, and indeed the lack of directly relevant contemporary sociological work on therapeutic pluralism in cancer care in poorer countries as a whole, it is useful to look at broader work that may contribute to an understanding of the processes discussed in this chap- ter. Although Western-based, this work identifies certain trends and theoretical ideas that, while needing to be operationalised differently, are worth considering in the context of Pakistan.
However, before doing so, it is worth bearing in mind two aspects of this existing work. First, that interpretations concerning the growth or use of non-biomedical practices are frequently extrapolated from broader the- ory rather than being CAM-specific. This is evident in, for instance, work on the diversification of healthcare which is couched in terms of: the post- modernisation of the social world (Eastwood 2000); the emergence of reflexive modernisation (Low 2004; Tovey et al. 2001); and in terms of new forms of identity work and selfhood (Sointu 2006a; Sointu 2006b).
And second, as yet, few of the theoretical assumptions have been chal- lenged empirically.
Perhaps three related elements of this work are potentially most useful for our analysis here. First, that increasing scepticism towards expert knowledge (with what some conceptualise as a postmodern context) is pushing patients away from biomedicine (e.g. Lupton and Tulloch 2002) and towards CAM. Clearly, in the Pakistani context, there are competing sources of expertise for patients to engage with and mediate – both those representing indigenous knowledge and biomedicine.
Second, the increasing utilisation of CAMs by patients has been concep- tualised as a product of the limitations of the application of the biomedical model of illness with CAM being viewed as providing a more rounded, patient-centred and holistic approach to illness and disease (e.g. Bishop and Yardley 2004). While country-specific, some of the non-biomedical practices in Pakistan can, in theory at least, be seen to provide this broader approach to healing. While the temporal development of their role may differ from the West, they do, again, in theory at least, share cer- tain points of differentiation from biomedical practices with CAMs in the West.
And third, that use of such modalities has also been viewed as embedded in wider social discontent with scientific developments and technologies (e.g. cloning, stem-cell research), and faith in the superiority of scientific knowledge of disease (e.g. Broom 2002). As a very different world view is often attached to the modalities being used in Pakistan, the potential rele- vance of this issue is again established.
At an empirical level, research has also shown that treatment choices are mediated by existing forms of social inequality. For example, there is some
evidence that decision making with regards to CAM involves considerable differentiation, with factors such as class, gender and geography having an impact on treatment choices. Research has shown that gender mediates decisions to use CAM amongst cancer patients, and that the wealthier mid- dle classes are more likely to access non-biomedical treatments (Thomas et al. 2001).
We return to these issues in the discussion to consider whether they hold any potential for understanding the processes of patient decision making in Pakistan.
Patient negotiation of options
The central task to be addressed here then is to begin to understand how individual decision making is being played out by cancer patients in Pakistan in the context of ongoing social change at local, national and global levels. The acknowledgement of the need for research to recognise the condition of an ever-changing (rather than static) environment is well established within many theoretical traditions (Tovey and Adams 2001);
it can, as a consequence, become little more than a taken-for-granted assumption that forms the background to research. In this study we were keen to test that assumption by examining the extent to which such change was something that actually constituted a meaningful part of the social context for our participants. The data showed that such change was indeed something more than an abstract contextual development for the cancer patients.
P: I think, for the last 25 to 30 years, there is a major shift from tradi- tional medicines to modern medicines. There is more awareness in our society now about modern medicines. And also, newly discov- ered diseases are only treated by modern medicines. Traditional healers cannot treat these diseases.
(Female, 36 years, breast cancer) Another respondent comments:
P: Mostly, people use [the services of] doctors. [In the past] they may have just used traditional medicines, but now the majority goes to doctors ... people do use traditional treatments in our community but I think more people go for modern medicine. I am not satisfied with traditional medicines.
(Male, 17 years, cancer of the bone)
Another respondent comments:
I: Have there been any changes recently in the way people get access to traditional medicine?
P: Hakeems, as we see today, are not experienced as compared to past.
As a result they are unable to cure illness. People are now fed up and they need something new. There have been changes in the attitude of people – they seek doctor’s treatment as well.
(Male, 37 years, fibre-sarcoma) Another respondent comments:
P: People in our community usually go for Dam Daroodas a first con- tact. Afterwards, they think of any other method of treatment like allopathic, Hikmat ... for the serious disease ... people prefer allo- pathic treatment. Only proper medical tests can diagnose the disease. Cancer can only be cured by modern medication.
(Female, 19 years, oesophageal cancer) In these quotations the overriding emphasis is on an evolving legitimacy for biomedicine at the expense of traditional practices and practitioners.
The ‘power’ of biomedicine was a recurrent theme. Participants identified both a trend towards biomedicine and an explicit reason for that trend – its potential impact in dealing with their cancer. However, it is important not to oversimplify what is going on here. Participant perceptions of change were not linear: they were not describing a one-way process towards biomedicine and they were not expressing an uncritical accep- tance of what the shift to biomedicine was introducing. Issues raised (to be addressed in detail later) included the tendency of biomedics to ‘play God’, to ‘hit the body too hard’, and to be inaccessible to large sections of the population.
P: I think in future traditional healing would be revived. In future tra- ditional healing would be effective method because people are fed up with modern medicines. Visiting hospitals is a painful exercise, it makes people tired and mad ... medical treatment is costly, while tra- ditional healing is cheaper.
(Female, 30 years, breast cancer) Another respondent:
P: I have seen a shift from allopathy to homeopathy. It’s good because it’s not sharp. It is effective and has lesser side effects.
(Male, 35 years, bowel cancer)
Another respondent:
P: Traditional medicines have less harmful effects. Modern medicines are more harmful.
(Male, 20 years, haematological malignancy) The situation is clearly rather more complex than a simple move from one form of medicine to another. The potential for a ‘return to TM’, although pure conjecture on the part of the above respondent, is a particularly pow- erful indicator of the multifaceted and potentially multidirectional evolution of therapeutic options for cancer patients in Pakistan. But what of the current situation? How are individuals making personal decisions at the present time?
On the basis of the evidence from this study, it is our contention that individuals are actively mediating therapeutic possibilities by drawing on, and indeed at times being constrained by, personal, social and cultural resources. We argue that this can be conceptualised by appreciation of indi- viduals’ active engagement with three temporally and spatially specific dimensions: structural/practical constraint; pragmatic experimentation; and cultural identity and religious affiliation. It is the negotiation (and varying power) of these dimensions that is crucial to the process.
Local, national and global context: social, political and therapeutic diversity
Structural and practical constraint
Individual cancer patient:
decision making process and mediated outcome
Cultural identity and religious affiliation
Pragmatic experimentation
Figure 8.1 Cancer patients’ negotiation of therapeutic options in Pakistan. Here we illustrate how the active decision making of patients is located at the centre of the three dimensions of influence. These are in turn located within the broader local, national and global context.The potential for multidimensional impact is noted.
Practical/structural influences on treatment decision making
In the main, the growth of non-biomedical practices, across the West in gen- eral, and in the UK in particular, has occurred in the private sector. Indeed, in the UK their use (with certain exceptions) has had a direct cost implica- tion for the individual, in contrast to core care, which is essentially free at the point of use. As the mainstreaming of CAM has become increasingly advocated so this cost dimension has been recognised as a barrier to use.
Moreover (and while a simple causal link is not being argued for), CAM use in the West has remained stubbornly skewed towards the middle classes (Thomas et al. 2001).
It is something of a truism, of course, that the context in Pakistan is very different. However, although they inevitably become manifest quite differ- ently at an empirical level, consistencies are identifiable conceptually: the existence of (in theory at least) a pluralistic therapeutic environment;
greater cost implications of certain choices over others; a background of economic diversity and so on. The key issue here, therefore, is to examine the context-specific impact of structural factors on decision making. As will be seen, and not surprisingly, evidence from this study highlights quite par- ticular practical pressures underpinning therapeutic choice.
I: Why do people go to Hakeems?
P: So far as I am concerned, I think they go to Hakeems due to poverty.
They can not afford expensive [biomedical] treatment.
(Female, 48 years, ovarian cancer) Another respondent comments:
P: [brother]: Allopathy is expensive while traditional medication is cheap so I think allopathy is better [but] not feasible for everyone.
I: In your community, which type of medicine do poorer people tend to use?
P: Poor people usually try Desi medicine first, because allopathic is expensive. People generally try to be cured by cheaper medicines.
(Male, 17 years, cancer of the bone) Another respondent:
I: In your neighbourhood, where do people prefer to go: to a doctor or a Hakeem?
P: Most of the people go to doctors; basically it is the matter of money.
The wealthy people go to doctors and poor people go to Hakeems.
(Male, 12 years, diagnosis unclear)
Another respondent:
P: These quacks are more successful than those qualified doctors. This is because of poverty that people prefer to go to the quack as com- pared to doctors. Doctors charge 500 rupees and quack charges 25 rupees. There are no ethics, no values, people are bad, very bad.
(Male, 60 years, thyroid cancer) Another respondent:
I: Did you travel far for your treatment?
P: We came from Rajanpur to Lahore.
I: What is the distance between the two?
P: Approximately four hundred kilometres.
I: How much did you pay [for treatment]?
P: We have spent eight to nine hundred thousand [US$15,000] besides government contributions. We had a business which is finished now and I will struggle until my death.
(Male, 20 years, haematological malignancy) The issue of cost was not just about receiving the most effective treatment.
Rather, it was about the burden of leaving work, travelling to the city, and paying for food and accommodation in the hospitals (see also Nigenda et al. 2001).
I: How do people use different therapies/healers etc.?
P: Poverty takes them to traditional healers. They are also sensible, and know well that there are specialist doctors for the particular disease, but they are bound to go for traditional healing. People seek the treatments like Dam Darood,spiritual healing, as people are poor.
They prefer self-medication and traditional healing because they don’t have access to modern treatment ... If they seek the help of doctors they have problems with accommodation, food, etc.
(Male, 37 years, fibresarcoma) While such findings could certainly have been anticipated, at a time when the promotion of traditional practices is being discussed more fully on the international stage, it is important that all assumptions are tested in the field. This is because if cost is essentially the only factor which underpins use of traditional practices (either instead of, or before, biomedicine), seri- ous ethical issues could be raised about the promotion of TM locally, nationally and internationally. However, despite the importance of such constraints, as will now be seen, it is important that we do not oversimplify the situation either in terms of glossing over economic variation within the
population or in terms of underplaying other (social and cultural) processes that are potentially central to decision making. We are dealing with a rather more complex situation than an inevitable (and sole) progression towards biomedicine if and when structural limitations can be overcome – one in which the active individual mediation of circumstance remains central.
Pragmatic experimentation and decision making
We define pragmatic experimentation in this context as the willingness and capacity to work through therapeutic options in order to see ‘what works’. Of course, it is important to consider such experimentation within the context of the structural constraints discussed above. The capacity to engage in such a strategy varies markedly according to (primarily material) resources, but it is important to recognise that for some it can play a very real part in the experi- ence of having cancer. And while the potential for such experimentation is influenced by context, the form it takes is informed by the nature of social contacts (and therefore the individual’s acquired experiential knowledge).
What the data showed was that a number of respondents (with the resources to do so) bypassed or challenged the paradigmatic or ideological bases of the therapeutic modalities on offer, and made decisions purely based on what was going to help them. This could take a number of forms.
For some this may entail a willingness to critique the basis of the modality, while for others a ‘suspension’ of, or removal from, consideration of the broader foundations (albeit possibly temporarily) in pursuit of therapeutic gain was evident. This pragmatism was exemplified by a tendency to try out options, but then to quickly move on if results were not satisfactory.
Such patients are prepared to adopt this approach in relation both to tra- ditional healers and biomedicine. As one young respondent (who it should be noted is talking from the perspective of a social location that permitted access to relatively early biomedical treatment) noted after stressing that
‘modern medicine’ was his first point of reference:
P: ... if pain continues and doctor’s medicines remain ineffective then people usually move towards Hakeems.
Later in the interview:
P: I think that modern medicines are better. [However,] one can use a knife either to peel an apple or to cut a throat. Similarly science has many advantages and disadvantages.
(Male, 17 years, bone cancer) There was scepticism amongst a number of the interviewees towards both biomedicine and traditional medicines; this was perpetuated by negative
experiences of interactions with, and treatments provided by, doctors and traditional healers. These patients tended to make decisions based on advice from relatives and members of the community, and then, once a treatment had begun, assessed the effectiveness of the practice. As mentioned above, on occasion this occurred without an engagement with the bases of particu- lar practices, whereas at other times it produced a questioning of the logic behind the modality, assessing the rationale behind, and potential benefit they may receive from, healing therapies.
P: There are a lot of people in our village – most of them are our rela- tives – who suggested we go to Hakeemsand Dam [so we did]. [The spiritual healer] said that [cancer] was a case of magic.
I: Who said that it is a case of magic?
P: [The spiritual healer] said all that rubbish.
I: Do other people go to this [spiritual healer]?
P: Yes. When I went to [the spiritual healer] in Lahore, there were a number of people including men, women and children. They came there for different diseases. [The spiritual healer] said, ‘Your donkey will die when you get rid of the disease.’ I then told him that we can’t afford a donkey and above all there is no need to kill any don- key ... they are no good these people.
(Female, 28 years, abdominal cancer) Cultural/status and religious
influences on decision making
We turn now to the cultural and religious. The key point here is to underline how while access to material resources is clearly a powerful factor in deci- sion making, action cannot be reduced to that alone. While (as we will see in our example of an influential cultural process) status aspiration and ascription related to social location action in one domain may reinforce the inequalities of another, we also see when we examine religion how identity and health behaviour are multidimensional.
I: Have you used [traditional healers]?
P: My whole family is very educated, my parents, my relatives don’t interfere in my matters. I know what is right and what is wrong. I know allopathic is better mode of treatment for a disease like cancer.
If I put my ear on views of people then I might adopt some wrong treatment which in turn could worsen the condition. I did not ask any Hakeemor quack for help because I feel they are not competent for serious illnesses like cancer. I know we should listen to society and our relatives but I also can’t compromise on serious issue like health.
(Female, age unknown, breast cancer)
Another respondent comments:
I: Have you ever gone to a Hakeemfor any treatment?
P: No, not at all.
I: Why?
P: I don’t believe in them.
I: Have you ever gone to a religious healer?
P: No, never.
I: Why?
P: We are educated people ... if you have got a serious disease you’ll obviously go to a doctor, not to a ... Hakeem.Doctor will examine you and diagnose you, and then you will get proper treatment.
(Female, 41 years, uterine cancer) Another respondent:
I: What do you think about traditional healing?
P: I think it is better for minor illnesses but not for cancer.
I: Where do people of your locality go for their treatment?
P: The majority of the people here belong to upper class, so they go to specialist doctors even for minor illnesses. They go to the national hospital or doctor’s hospital ... There is continuous devel- opment in the field of medicine. People believe that it is best for all problems.
(Female, 51 years, uterine cancer) So how might we begin to understand what’s going on here? Well, it is apparent from amongst these respondents’ discussion of the type of medi- cine accessed that each brought with it connotations of status and social standing – the specific traditional medicine being discussed is viewed as the option of the poor and the less educated. It is equated with being in a posi- tion that prevents one from choosing ‘the best’ (see also Nigenda et al.
2001), and we might therefore tentatively begin to see this in terms of cul- tural distinction (Bourdieu 1984) – the utilisation of medicine as a means of underlining social differentiation. Clearly, this is a preliminary understand- ing of the situation from this initial study, but it is certainly worthy of critical examination in later studies.
Interestingly, however, and in keeping with the sense of complexity that was revealed by the data, such differentiation as is outlined above did not simply constitute a rejection of the local or the traditional in favour of the Western or the global. It was instead a partialdifferentiation that was evi- dent – one based on a separation from only specific parts of traditional culture and practice. When traditional medicines were explicitly rooted in religion, specifically in Islam, there was more of a sense of identification with