“The lung, from the disease you know”, Epistemic Asymmetry from a Chemotherapy Clinic in Saudi Arabia: A Case Study

Intercultural Matters by Maha Alayyash, Assistant Professor, English Department, Jeddah University

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Introduction

The Saudi society is based on strong family ties rather than patient autonomy (Aljubran, 2010). Therefore, the disclosure of cancer diagnosis is still related to the misconception of incurability (Khalil, 2013). To facilitate the misconception of cancer as a life-threatening illness, physicians tend to disclose cancer diagnosis to chaperones and conceal from, or even modify the unfavourable information given to the patients. Some patients have no right to know the reality of their illness nor to report on their illness. In short, epistemic asymmetry is conceptualised here as violating knowledge norms including the patient’s epistemic primacy (i.e. right to know) (Heritage, 2013).  Therefore, the aim of this paper is to describe the epistemic resources that are used by the oncologist and chaperone to share epistemic access regarding the patient’s illness. Thus, this study attempts to answer the following research question:

How do the oncologist and the chaperone share epistemic access regarding the patient’s illness without involving the patient?

Methodology

In order to answer the research question, a case study((With regards to the number of collected recordings, a total of 117 medical recordings were obtained from the three hospitals–the majority came from the governmental hospital, about 120 hours of data.)) was conducted. The exceptional case((Such an exceptional case is among seventeen cases in which some cancer patients either do not know that they are diagnosed with cancer or do not know which stage of cancer they have reached. The reason for choosing a case study is that it represents deviant case from the rest of the data by manifesting the oncologist’s and the chaperone’s exceptional attitudes in breaching the patient’s primacy (e.g. disease non- disclosure.) )) was taken from a chemotherapy clinic, where the patient does not know the extent of her illness. The exceptional case is about a 41-year-old Saudi female patient, Noura((Pseudonym)), who had an intermediate school certificate. Noura was accompanied by her illiterate mother who was 60 years old. Noura had been diagnosed with breast cancer and had had one of her breasts removed. She knew about the breast cancer she had had in the past. Now the tumour had spread throughout her body and she had no idea about this. The patient seemed very tired and sick. The attendants in the clinic were: a female oncology specialist (DR.), the patient (Pt) and her chaperone (FCH), a female nurse (N) and the researcher.

Conversation Analytic approach was used to uncover the various epistemic resources used by interlocutors to manage the dimensions of epistemic asymmetry with reference to these resources for improving the quality of care.

Conversation Analysis Results

In the presence of Noura, both physicians and chaperones collaboratively use linguistic devices to avoid cancer terminology in front of the patients as well as to maintain and establish shared knowledge. In Extract (1) below, as the consultation reaches a close, the oncologist asks the nurse for an admission paper to request admission for Noura. While the oncologist is writing the admission for her, Noura initiates a symptom-problem “my stomach I have pa(h)in my stomach.” (line 66). The doctor does not acknowledge this (line 67). The female chaperone aligns and supports Noura by speaking for her, reiterating what she has just said ‘she is complaining about her stomach’ (line 68).

The chaperone, here, provokes the doctor to take the next action (line 68), i.e. by asking further questions on how and when Noura has been suffering from stomach pain, but the female doctor again does not acknowledge this as she is busy reading the patient’s file (line 69). After a long pause (line 70), the oncologist focuses on a new diagnostic problem, ‘the lungs’ instead of dealing with the patient’s complaint, i.e. pain in the stomach’. In response to the chaperone’s previous turn ‘she is complaining of her stomach’ (line 68), the oncologist uses various linguistic features to display shared knowledge with Noura’s mother about Noura’s cancer diagnosis. I will explain these features turn-by-turn.

First, the oncologist’s turn “The luNG (.) from the disEASE you know=” (line 71) carries different linguistic features. These are: (1) the oncologist makes a link between the problem in the lung with the main factor ‘from the disEASE ’ (i.e. tumour) which portrays a specific-general account as recognisable shared knowledge (Stokoe, 2012; Widdicombe, 2016), (2) the use of the definite article, ‘the’ here before ‘lung’ and before’ disease’ indicates that both parties, (i.e. doctor and chaperone) share the same knowledge which the patient does not have, (3) the use of a common knowledge component ‘you know’ is a confirmation that both participants, i.e. doctor and chaperone, know the patient’s problem. In other words, the use of ‘you know’ here has specific characteristics which indicate that the information given by the physician is shared by the co-participants and is not new. These characteristics are: (a) ‘You know’ gives background information about the previous problematic item, namely the fact that the patient’s pain in her lung is from the disease, (line 71); and (b) it is directly addressed to the chaperone by using the second person pronoun ‘you’ in ‘you know’ who has joint access to this claim.

Second, the expansion produced in line 72 by the oncologist’s turn, “the problem here is in the luNG” comes as the assertion latched to the oncologist’s previous utterance, (line 71). This indicates that the tumour spread to the lung although the oncologist does not explicitly say it.

Third, the patient’s chaperone seeks confirmation from the oncologist as to whether or not the pain in Noura’s stomach is from the disease ‘=and her stomach?=’ (line 73). It might be that the chaperone here uses the conjunction ‘and’ to connect clauses together, as a way of demonstrating her shared knowledge with the doctor on one hand and to remind the oncologist of Noura’s main complaint, “pa(h)in my stomach” which was mentioned by Noura (line 66) (Eder, 1988; Lerner, 1992).

Fourth, in the oncologist’s immediate and latch response, “‘=and in the stomach as well, [this is from the disease as well” (line 74), the doctor confirms by repeating, that the problem is in the stomach as well, followed by a confirmation that the pain in the stomach is from the disease. Such confirmation and clarification trajectories move from specific (‘the stomach’, ‘the lung’) to general, (the disease’) which also indicates that the tumour has spread to both the stomach and lung.

Discussion

The findings have shown that the concealment of a patients’ cancer diagnosis remains a major problem for oncologists and chaperones in Saudi Arabia. Findings from the data show that although the patient (Noura) was present during the oncologist-chaperone dyadic interaction, she was left isolated. Both oncologist and chaperone use various linguistic features to display shared knowledge about the patient’s disease. The finding of shared knowledge is consistent with Asmuß’s (2011) study in that questions about epistemics have significance in displaying shared knowledge. For example, the use of ‘you know’ in the interaction is a device of shared knowledge. Moreover, the shared knowledge findings support the conclusions of previous research. For example, Holland, et al., (1987) found that physicians from twenty countries reported that they frequently used various lexical items as substitutes for the word “cancer” (such as ‘disease’) for two purposes: (1) to refer to the patient’s health condition, and (2) to decrease the impact of cancer disclosure.

Therefore, although the exceptional case study is not representative of the total Saudi Arabia population; it particularly sheds light on a practical problem that occurs during medical consultations. It is hoped that this exceptional case will contribute to the literature of epistemic asymmetry by illuminating the patient’s autonomy and primacy regarding the reality of illness as well as the narration of illness.

References

Aljubran, A. (2010). The attitude towards disclosure of bad news to cancer patients in Saudi  Arabia. Annals of Saudi Medicine, 30(2):141-144.

Asmuß, B. (2011). Proposing shared knowledge as a means of pursuing agreement. In T. Stivers, L. Mondada, & J. Steensig (Eds.), The morality of knowledge in conversation (pp. 207-234). Cambridge: Cambridge University Press.

Eder, D. (1988). Building cohesion through collaborative narration. Social Problem Quarterly, 51(3): 225-235.

Heritage, J. (2013). Epistemics in conversation. In J. Sidnell, & T. Stivers (Eds.), The handbook of conversation analysis (pp. 370-394). Chichester: Wiley-Blackwell.

Holland, J. C., Geary, N., Marchini, A., & Tross, S. (1987). An international survey of physician attitudes and practice in regard to revealing the diagnosis of cancer. Cancer Investigation, 5(2): 151-154.

Khalil, R. (2013). Attitudes, beliefs and perceptions regarding truth disclosure of cancer-related information in Middle East: A review. Palliative & Supportive Care, 11(1): 69-78.

Lerner, G. (1992). Assisted storytelling: Deploying shared knowledge as a practical matter. Qualitative Sociology, 15(3): 247-271.

Stokoe, E. (2012). “You know how men are”: Description, categorization and theanatomy of a categorial practice. Gender and Language, 6 (1), 231-253

Widdicombe, S. (2016). Some relevant things about gender and other categories in discursive psychology. In C., Tileagă & E., Stokoe (Eds), Discursive psychology: classic and contemporary issues (pp. 196-209). London: Routledge.