Diagnostic refusals, temporality, and subjectivity among “non-compliant” sufferers of asthma

Abstract

Medical guidelines define asthma as a chronic lung disease usually treated with daily, preventative medication. A significant proportion of asthma sufferers, however, reject understandings of asthma as chronic, based on their experiences of bouts of breathlessness that are frightening but often episodic and short-lived. This paper considers the experiential aspects of asthma among New Zealanders and explores the interplays between pharmaceutical temporalities and the temporalities of respiratory distress. Focusing on asthma sufferers who eschew preventative medication, I argue that while standardized treatment programs assume a particular mode of reckoning time, sufferers can engage in radically different ways of temporalizing the symptom and the subject, indicating the need for a new conceptualization of what “non-compliance” may entail.

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Notes

  1. 1.

    With the assistance of five graduate students, semi-structured interviews were conducted with 40 adult sufferers and parents of children with asthma; 36 respiratory specialists, general practitioners, nurses, and other medical professionals; and six alternative health providers. Ethics approval was granted by the University of Auckland. Some of the examples of asthma sufferers’ and medical professionals’ perspectives discussed here appear in Trnka (2017) but were not analyzed in relation to temporality in that text.

  2. 2.

    In highlighting asthma sufferers’ own positioning of themselves vis-à-vis pharmaceutical temporalities, I am developing my examination of subjectivity in light of three different theoretical strands: processual and experiential views of the subject as in a state of becoming (as, for example, articulated by Biehl and Locke), Gramsci’s discussion of “good sense” critiques developed out of experiences that run against the grain of hegemonic forms, and Foucault and Rose’s insights into governmentality, in particular the crafting of the “responsible patient” as part of contemporary medicine.

  3. 3.

    Due to the international stature of his work, I have not used a pseudonym for Julian Crane. Otherwise, all of the names of the medical professionals, asthma sufferers, and parents are pseudonyms.

  4. 4.

    Others, however, particularly when discussing children’s health, described longer-term interactions resulting in diagnosis. International diagnosis guidelines state that asthma is “defined by the history of respiratory symptoms such as wheeze, shortness of breath, chest tightness and cough that vary over time and in intensity, together with variable expiratory airflow limitation” (Global Initiative for Asthma 2015, p. 2) but do not specify the time period over which this history is to be taken, much less when lack of symptoms indicates asthma’s cessation.

References

  1. Adams, V., M. Murphy, and A. Clarke. 2009. Anticipation: technoscience, life, affect, temporality. Subjectivity 28: 246–265.

    Article  Google Scholar 

  2. Allen-Collinson, J., and H. Owton. 2014. Take a deep breath. International Review for the Sociology of Sport 49 (5): 592–608.

    Article  Google Scholar 

  3. Applbaum, K. 2006. Educating for global mental health. In Global pharmaceuticals: ethics, markets, practices, ed. A. Petryna, A. Lakoff, and A. Kleinman, 85–110. Durham: Duke University Press.

    Google Scholar 

  4. Applbaum, K., and M. Oldani. 2010. Towards an era of bureaucratically controlled medical compliance? Anthropology & Medicine 17 (2): 113–127.

    Article  Google Scholar 

  5. Aroni, R., et al. 2003. Asthma self-management: what do we really mean? Australian Journal of Primary Health 9 (2&3): 10–17.

    Google Scholar 

  6. Barnes, P., and S. Pedersen. 1993. Efficacy and safety of inhaled corticosteroids in asthma. American Review of Respiratory Disease 148: S1–S26.

    Article  Google Scholar 

  7. Beauchesne, M., et al. 2006. Action plans in asthma. Canadian Respiratory Journal 13 (6): 306–310.

    Article  Google Scholar 

  8. Becker, G. 1997. Disrupted lives. Berkeley: University of California Press.

    Google Scholar 

  9. Biehl, J. 2011. Homo economicus and life markets. Medical Anthropology Quarterly 25 (2): 278–284.

    Article  Google Scholar 

  10. Biehl, J. 2013[2005]. Vita: life in a zone of social abandonment. Berkeley: University of California Press.

  11. Biehl, J., and P. Locke (eds.). 2017. Unfinished: the anthropology of becoming. Durham and London: Duke University Press.

    Google Scholar 

  12. Blackman, L., J. Cromby, D. Hook, D. Papadopoulos, and V. Walkerdine. 2008. Creating subjectivities. Subjectivity 22: 1–27.

    Article  Google Scholar 

  13. Bodenheimer, T., et al. 2002. Patient self-management of chronic disease in primary care. JAMA 288 (19): 2469–2475.

    Article  Google Scholar 

  14. Canguilhem, G. 1989[1978]. The normal and the pathological. New York: Zone Books.

  15. Charles, T., et al. 2007. An audiovisual reminder function improves adherence with inhaled corticosteroid therapy in asthma. Journal of Allergy & Clinical Immunology 119 (4): 811–816.

    Article  Google Scholar 

  16. Conrad, P. 1985. The meaning of medications. Social Science and Medicine 20 (1): 29–37.

    Article  Google Scholar 

  17. Conrad, P. 2007. The medicalization of society. Baltimore: Johns Hopkins University Press.

    Google Scholar 

  18. Csordas, T. 1993. Somatic modes of attention. Cultural Anthropology 8 (2): 135–156.

    Article  Google Scholar 

  19. Dahl, R. 2006. Systemic side effects of inhaled corticosteroids in patients with asthma. Respiratory Medicine 100 (8): 1307–1317.

    Article  Google Scholar 

  20. Das, V. 2006. Life and words. Berkeley: University of California Press.

    Google Scholar 

  21. Das, V., and R. Das. 2007. How the body speaks. In Subjectivity: ethnographic investigations, ed. J. Biehl, B.J. Good, and A. Kleinman, 66–97. Berkeley: University of California Press.

    Google Scholar 

  22. DelVecchio Good, M. 2001. The biotechnical embrace. Culture, Medicine and Psychiatry 25 (4): 395–410.

    Article  Google Scholar 

  23. Derrida, J. 1981. Dissemination. Chicago: University of Chicago Press.

    Google Scholar 

  24. Dumit, J. 2012. Drugs for life. Durham: Duke University Press.

    Google Scholar 

  25. Durkheim, E. 2001[1912]. Elementary forms of religious life. Oxford: Oxford University Press.

  26. Estroff, S. 1993. Identity, disability, and schizophrenia. In Knowledge, power and practice, ed. S. Lindenbaum, and M. Lock, 247–286. Berkeley: University of California Press.

    Google Scholar 

  27. Feldman, C., et al. 1962. Establishment and evaluation of an asthma self-management program. Journal of Allergy and Clinical Immunology 69 (1): 144.

    Article  Google Scholar 

  28. Ferzacca, S. 2000. ‘Actually, I don’t feel that bad’: managing diabetes and the clinical encounter. Medical Anthropology Quarterly 14 (1): 28–50.

    Article  Google Scholar 

  29. Ferzacca, S. 2010. Chronic illness and the assemblages of time in multisited encounters. In Chronic conditions, fluid states, ed. L. Manderson, and C. Smith-Morris, 157–174. New Brunswick: Rutgers University Press.

    Google Scholar 

  30. Fortun, M., et al. 2014. Asthma, culture, and cultural analysis. In Heterogeneity in asthma, ed. A. Brasier, 321–332. New York: Springer.

    Google Scholar 

  31. Funk, L. 2013. Home healthcare and family responsibility. Healthcare Policy 9: 86–97.

    Google Scholar 

  32. Global Initiative for Asthma. 2015. The global strategy for asthma management and prevention. http://www.ginasthma.org/. Accessed 23 November 2015.

  33. Gramsci, A. 1971. Selections from the prison notebooks. London: Lawrence and Wishart.

    Google Scholar 

  34. Greene, J., and D. Herzberg. 2010. Hidden in plain sight: marketing prescription drugs to consumers in the twentieth century. American Journal of Public Health 100 (5): 793–803.

    Article  Google Scholar 

  35. Guyer, J. 2007. Prophecy and the near future. American Ethnologist 34 (3): 409–421.

    Article  Google Scholar 

  36. Harper, J. 2004. Breathless in Houston. Medical Anthropology 23 (4): 295–326.

    Article  Google Scholar 

  37. Holt, S., and R. Beasley. 2001. The burden of asthma in New Zealand. Wellington: Asthma and Respiratory Foundation.

    Google Scholar 

  38. Horne, R. 2006. Compliance, adherence, and concordance. Chest 130 (1 suppl): 65S–72S.

    Article  Google Scholar 

  39. Jackson, M. 2009. Asthma: the biography. Oxford: Oxford University Press.

    Google Scholar 

  40. Kaufman, S. 2005. And a time to die: how American hospitals shape the end of life. Chicago: University of Chicago Press.

    Google Scholar 

  41. Lakoff, A. 2005. The private life of numbers. In Global assemblages: technology, politics, and ethics as anthropological problems, ed. A. Ong, and S.J. Collier, 194–213. Malden, MA: Blackwell.

    Google Scholar 

  42. Lerner, B. 1997. From careless consumptives to recalcitrant patients. Social Science and Medicine 45 (9): 1423–1431.

    Article  Google Scholar 

  43. Martin, E. 2007. Bipolar expeditions: mania and depression in American culture. Princeton: Princeton University Press.

    Google Scholar 

  44. Mattingly, C. 1998. Healing dramas and clinical plots. Cambridge: Cambridge University Press.

    Google Scholar 

  45. Mattingly, C. 2010. The paradox of hope: journeys through a clinical borderland. Berkeley: University of California Press.

    Google Scholar 

  46. McNally, A., et al. 2004. Application of asthma action plans to childhood asthma. New Zealand Medical Journal 18: 117.

    Google Scholar 

  47. Messinger, S. 2010. Rehabilitating time. Medical Anthropology 29 (2): 150–169.

    Article  Google Scholar 

  48. Miller, P., and N. Rose. 2008. Governing the present. Malden: Polity Press.

    Google Scholar 

  49. Minh-ha, T. 1989. Woman, native, other. Bloomington: Indiana University Press.

    Google Scholar 

  50. Mol, A. 2003. The body multiple: ontology in medical practice. Durham: Duke University Press.

    Google Scholar 

  51. Mol, A., I. Moser, and J. Pols. 2010. Care: putting practice into theory. In Care in practice, ed. A. Mol, I. Moser, and J. Pols, 7–26. Bielefeld: Transcript Verlag.

    Google Scholar 

  52. Munn, N. 1992. The cultural anthropology of time. Annual Review of Anthropology 21: 93–123.

    Article  Google Scholar 

  53. Murphy, K., et al. 2012. Asthma management and control in the United States. Allergy and Asthma Proceedings 33 (1): 54–64.

    Article  Google Scholar 

  54. Pearce, N. 2007. Adverse reactions: the fenoterol story. Auckland: Auckland University Press.

    Google Scholar 

  55. Peck, J., and N. Theodore. 2012. Reanimating neoliberalism: Process geographies of neoliberalisation. Social Anthropology 20 (2): 177–185.

    Article  Google Scholar 

  56. Prout, A., L. Hayes, and L. Gelder. 1999. Medicines and the maintenance of ordinariness in the household management of childhood asthma. Sociology of Health & Illness 21 (2): 137–162.

    Article  Google Scholar 

  57. Rose, N. 2006. The politics of life itself. Princeton: Princeton University Press.

    Google Scholar 

  58. Rouse, C. 2010. Patient and practitioner noncompliance. Anthropology & Medicine 17 (2): 187–200.

    Article  Google Scholar 

  59. Royal College of Physicians. 2014. Why asthma still kills. London: RCP.

    Google Scholar 

  60. Sharp, L.A. 2014. The transplant imaginary. Berkeley, CA: University of California Press.

    Google Scholar 

  61. Shubin, S., F. Rapport, and A. Seagrove. 2015. Complex and dynamic times of being chronically ill. Social Science and Medicine 147: 105–112.

    Article  Google Scholar 

  62. Smith-Morris, C. 2010. The chronicity of life, the acuteness of diagnosis. In Chronic conditions, fluid states, ed. L. Manderson, and C. Smith-Morris, 21–37. New Brunswick: Rutgers University Press.

    Google Scholar 

  63. Sunder Rajan, K. 2012. Pharmaceutical crises and questions of value. The South Atlantic Quarterly 111 (2): 321–346.

    Article  Google Scholar 

  64. Trnka, S. 2011. Specters of uncertainty: violence, humor, and the uncanny in Indo-Fijian communities after the May 2000 Fiji coup. Ethos 39 (3): 331–348.

    Article  Google Scholar 

  65. Trnka, S. 2017. One blue child: asthma, responsibility and the politics of global health. Palo Alto: Stanford University Press.

    Google Scholar 

  66. Trostle, J. 1988. Medical compliance as an ideology. Social Science and Medicine 27 (12): 1299–1308.

    Article  Google Scholar 

  67. van der Geest, S., and S.R. Whyte. 1989. The charm of medicines. Medical Anthropology Quarterly 3 (4): 345–367.

    Article  Google Scholar 

  68. Verdery, K. 1996. What was socialism and what comes next?. Princeton: Princeton University Press.

    Google Scholar 

  69. Vuckovic, N. 1999. Fast relief: buying time with medications. Medical Anthropology Quarterly 13 (1): 51–68.

    Article  Google Scholar 

  70. Whitmarsh, I. 2008. Biomedical ambivalence: asthma diagnosis, the pharmaceutical, and other contradictions. Ithaca: Cornell University Press.

    Google Scholar 

  71. Whitmarsh, I. 2010. The ascetic subject of compliance. In When people come first: critical studies in global health, ed. J. Biehl, and A. Petryna, 302–324. Princeton, NJ: Princeton University Press.

    Google Scholar 

  72. Willems, D. 2000. Managing one’s body using self-management techniques: practicing autonomy. Theoretical Medicine and Bioethics 21: 23–38.

    Article  Google Scholar 

  73. World Health Organization. 2003. Adherence to long-term therapies. Geneva: World Health Organization.

    Google Scholar 

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Trnka, S. Diagnostic refusals, temporality, and subjectivity among “non-compliant” sufferers of asthma. Subjectivity 11, 1–20 (2018). https://doi.org/10.1057/s41286-017-0039-5

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Keywords

  • Patient subjectivity
  • Temporality
  • Non-compliance
  • Pharmaceuticals
  • Asthma