Open Access Open Access  Restricted Access Subscription Access

Explaining epistemic injustice in medicine: tightrope walking, double binds, paths of least resistance and the invisibility of power positions to those who occupy them

Garrath Williams

Abstract


Person-centered healthcare requires providers to appreciate the knowledge and perspectives of patients. Effective and appropriate care depends on such knowledge. Medical institutions can only function well when they acknowledge patients’ own experiences. Yet a range of evidence shows that professionals and organisations often ignore patients’ own knowledge about their condition and treatment. This article aims to explain why this epistemic injustice occurs and persists. (Epistemic: to do with knowledge. Justice, because professionals and organisations do wrong when they bypass or deny patients’ own knowledge.) The explanation focuses on problems of power and accountability. Illness is a disempowering experience, partly for bodily and psychological reasons, partly because the ill person depends on others for help, partly because professionals and organisations are specially empowered in order that they may help. Occupying a lesser power position, patients often walk a tightrope between conflicting demands and may be caught in double binds: situations where every possibility for action risks bad outcomes. By contrast, professionals need not notice their greater power position and how this opens up paths of least resistance, whereby it is easy to ignore or belittle patients’ knowledge. When it is hard for patients to voice their “complaints” (the details of their illness, their sense of being badly treated), accountability falters. Healthcare providers may see themselves as expert and responsible, even as they fail many persons they are meant to help.

Keywords


Accountability, chronic illness, epistemic justice, healthcare complaints, medically unexplained symptoms, professional authority, rare illnesses, responsibility

Full Text:

PDF

References


Bateson, G., Jackson, D.D., Haley, J. & Weakland, J. (1956). Toward a theory of schizophrenia. Behavioral Science 1 (4) 251-264.

Loughlin, M., Mercuri, M., Pârvan, A., Copeland, S.M., Tonelli, M. & Buetow, S. (2018). Treating real people: Science and humanity. Journal of Evaluation in Clinical Practice 24 (5) 919-929.

Fricker, M. (2007). Epistemic Injustice: Power and the Ethics of Knowing. Oxford: Oxford University Press.

Carel, H. & Kidd, I. (2014). Epistemic injustice in healthcare: a philosophical analysis. Medicine, Health Care and Philosophy 17 (4) 529-540.

Kidd, I. & Carel, H. (2017). Epistemic injustice and illness. Journal of Applied Philosophy 34 (2) 172-190.

Carel, H. (2008). Illness: The Cry of the Flesh. Stocksfield: Acumen.

Greenhalgh, T., Snow, R., Ryan, S., Rees, S. & Salisbury, H (2015). Six ‘biases’ against patients and carers in evidence-based medicine. BMC Medicine 13, 200.

Miles, A. & Loughlin, M. (2011). Models in the balance: evidence-based medicine versus evidence-informed individualized care. Journal of Evaluation in Clinical Practice 17 (4) 531-536.

Frosch, D.L., May, S.G., Rendle, K.A.S., Tietbohl, C. & Elwyn, G. (2012). Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Affairs 31 (5) 1030-1038.

Toombs, S.K. (1993). The metamorphosis: the nature of chronic illness and its challenge to medicine. Journal of Medical Humanities 14 (4) 223-230.

Jutel, A. (2011). Putting a Name to It: Diagnosis in Contemporary Society. Baltimore: Johns Hopkins University Press.

Rowe, D. (1990). Foreword. In: Against Therapy. Masson J. (Ed.). London: Fontana.

Toombs, S.K. (1988). Illness and the paradigm of lived body. Theoretical Medicine and Bioethics 9, 201-226.

Goffman, E. (1968). Asylums: Essays on the Social Situation of Mental Patients and Other Inmates. London: Pelican.

Ziebland, S., Coulter, A., Calabrese, J.D. & Locock, L. (2013). Understanding and Using Health Experiences: Improving Patient Care. Oxford: Oxford University Press.

Chalmers, I., Atkinson, P., Mark Fenton, F.M., Firkins, L., Crowe, S. & Cowan, K. (2013). Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003-2013. Journal of the Royal Society of Medicine 106 (12) 482-491.

Klitzman, R. (2008). When Doctors Become Patients. Oxford: Oxford University Press.

Tomlinson, J. (2014). Lessons from “the other side”: teaching and learning from doctors’ illness narratives. BMJ Careers 348, g3600. [19] Wylie, A. (2003). Why standpoint matters. In: Science and Other Cultures: Issues in Philosophies of Science and Technology. Figueroa, R. & Harding, S. (Eds.), pp. 26-48. New York: Routledge.

Rouse, J. (2005). Power/knowledge. In: The Cambridge Companion to Foucault (2nd edn.). Gutting, G. (Ed.), pp. 95-122. Cambridge: Cambridge University Press.

Baehr, J. (2004). Virtue epistemology. In: Internet Encyclopaedia of Philosophy. B. Dowden & J. Fieser. (Eds.). Available from: http://www.iep.utm.edu/virtueep. [22] Haddock, A., Millar, A. & Pritchard, D. (Eds.). (2011). Social Epistemology. New York: Oxford University Press.

Kidd, I.J. (2017). Epistemic injustice and illness bibliography (updated 24/1/17). Available from: https://www.academia.edu/30136837/Epistemic_Injustice_and_Illness_Bibliography. [24] Werner, A. & Malterud, K. (2003). It is hard work behaving as a credible patient: encounters between women with chronic pain and their doctors. Social Science & Medicine 57 (8) 1409–1419.

Malterud, K., Candib, L. & Code, L. (2004). Responsible and responsive knowing in medical diagnosis: the medical gaze revisited. NORA - Nordic Journal of Feminist and Gender Research 12, 8-19.

Håkanson, C., Sahlberg-Blom, E. & Ternestedt, B.M. (2010). Being in the patient position. Qualitative Health Research 20 (8) 1116-1127.

Lillrank, A. (2003). Back pain and the resolution of diagnostic uncertainty in illness narratives. Social Science & Medicine 57 (6) 1045-1054.

Newton, B.J., Southall, J.L., Raphael, J.H., Ashford, R.L. & LeMarchand, K. (2013). A narrative review of the impact of disbelief in chronic pain. Pain Management Nursing 14 (3) 161-171.

Price, E. & Walker, E. (2014). Diagnostic vertigo: the journey to diagnosis in systemic lupus erythematosus. Health 18 (3) 223-239.

Cassam, Q. (2017). Diagnostic error, overconfidence and self-knowledge. Palgrave Communications 3, 17025.

Freeman, L. (2015). Confronting diminished epistemic privilege and epistemic injustice in pregnancy by challenging a ‘panoptics of the womb’. Journal of Medicine and Philosophy 40 (1) 44-68.

Kurs, R. & Grinshpoon, A. (2018). Vulnerability of individuals with mental disorders to epistemic injustice in both clinical and social domains. Ethics & Behavior 28 (4) 336-346.

Malterud, K. & Ulriksen, K. (2011). Obesity, stigma, and responsibility in health care: a synthesis of qualitative studies. International Journal of Qualitative Studies on Health and Well-Being 6 (4) 8404.

Parsons, T. (1991). The Social System. London: Routledge.

Alexander, L. (1980). The double-bind between dialysis patients and their health practitioners. In: The Relevance of Social Science for Medicine. Eisenberg, L. & Kleinman, A. (Eds.), pp. 307-329. Dordrecht: D Reidel.

Jennings, B., Callahan, D. & Caplan, A.L. (1998). Ethical challenges of chronic illness. Hastings Center Report 18 (1) 1-16.

Strauss, A. (1973). Chronic illness. Society 10, 33-39.

Strauss, A. (1987). Health policy and chronic illness. Society 25, 33-39.

Thorne, S., Ternulf Nyhlin, K. & Paterson, B.L. (2000). Attitudes toward patient expertise in chronic illness. International Journal of Nursing Studies 37 (4) 303-311.

Thorne, S., Harris, S.R., Mahoney, K., Con, A. & McGuinness, L. (2004). The context of health care communication in chronic illness. Patient Education and Counseling 54 (3) 299-306.

Kleinman, A. (1988). The Illness Narratives. New York: Basic Books.

Dizon, D. (2012). The Power of words. ASCO Connection. Available from: https://connection.asco.org/blogs/power-words. [43] Gordon, S. (2015). Medicine’s F word - fail. BMJ Blog. Available from: http://blogs.bmj.com/bmj/2015/12/07/suzanne-gordon-medicines-f-word-fail/. [44] EURORDIS. (2009). European Organisation for Rare Diseases. Available at: https://eurodis.org.

Katz, J. (1984). The Silent World of Doctor and Patient. New York: Free Press.

Frye, M. (1983). Oppression. In: The Politics of Reality: Essays in Feminist Theory. Frye, M., pp. 1-16. London: Crossing Press.

Saleebey, D. & Ski Hunter, M. (1980). The power of situations: an approach to understanding powerlessness and oppression. Journal of Sociology & Social Welfare 7, 177-187.

Malterud, K. & Taksdal, A. (2011). Shared spaces for reflection: approaching medically unexplained disorders. Junctures: The Journal for Thematic Dialogue 9, 27-38.

Kidd, I. (2015). Illness, implicit bias, and intersectionality. Available from: https://www.academia.edu/5606598/Illness_Implicit_Bias_and_Intersectionality. [50] Ofri, D. (2012). When the patient is ‘noncompliant’. New York Times. Available from: http://well.blogs.nytimes.com/2012/11/15/when-the-patient-is-noncompliant. [51] Eriksen, T.E., Kirkengen, A.L. & Vetlesen, A.J. (2012). The Medically Unexplained revisited. Medicine, Health Care and Philosophy 16 (3) 587-600.

Greco, M. (2012). The classification and nomenclature of ‘Medically Unexplained Symptoms’: conflict, performativity and critique. Social Science & Medicine 75 (12) 2362-2369.

Nettleton, S. (2006). ‘I just want permission to be ill’: towards a sociology of Medically Unexplained Symptoms. Social Science & Medicine 62 (5) 1167-1178.

Rosenhan, D.L. (1973). On being sane in insane places. Science 179 (4070) 250-258.

Gask, L., Dowrick, C., Salmon, P., Peters, S. & Morriss, R. (2011). Reattribution reconsidered: narrative review and reflections on an educational intervention for Medically Unexplained Symptoms in primary care settings. Journal of Psychosomatic Research 71 (5) 325-334.

Lamberts, R. (2010). A letter to patients with chronic disease. Musings of a Distractible Mind. Available from: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease. [57] Katz, J. (1987). Epilogue: physician-patient encounters on a darkling plain. Western New England Law Review 9, 207-226.

Maguire, P. (1985). Barriers to psychological care of the dying. British Medical Journal 291, 1711-1713.

Åsbring, P. & Närvänen, A.L. (2003). Ideal versus reality: physicians’ perspectives on patients with chronic fatigue syndrome (CFS) and fibromyalgia. Social Science & Medicine 57, 711-720.

Anderson, R.M. & Funnell, M.M. (2005). Patient empowerment: reflections on the challenge of fostering the adoption of a new paradigm. Patient Education and Counseling 57 (2) 153-157.

Blakeman, T., Macdonald, W., Bower, P., Gately, C. & Chew-Graham, C. (2006). A qualitative study of GPs’ attitudes to self-management of chronic disease. British Journal of General Practice 56 (527) 407-414.

Salmon, P. & Hall, G.M. (2003). Patient empowerment and control: a psychological discourse in the service of medicine. Social Science & Medicine 57 (10) 1969-1980.

Savino, A. & Fordtran, J. (2006). Factitious disease: clinical lessons from case studies at Baylor University Medical Center. Proceedings (Baylor University Medical Center) 19 (3) 195-208.

Anonymous. (2015). A patient’s perspective: dancing the dance. BMJ Blogs. Available from: http://blogs.bmj.com/bmj/2015/09/03/a-patients-perspective-dancing-the-dance/. [65] Lazare, A. (1987). Shame and humiliation in the medical encounter. Archives of Internal Medicine 147, 1653-1658.

Malterud, K. (2005). Humiliation instead of care? Lancet 366 (9488) 785-786.

Malterud, K. & Thesen, J. (2008). When the helper humiliates the patient: a qualitative study about unintended intimidations. Scandinavian Journal of Public Health 36, 92-98.

Dickson, A., Knussen, C. & Flowers, P. (2007). Stigma and the delegitimation experience: an interpretative phenomenological analysis of people living with chronic fatigue syndrome. Psychology & Health 22 (7) 851-867.

Galasiński, D. (2016). Medical status of the narrative. Available from: http://dariuszgalasinski.com/2016/12/14/medical-status-of-the-narrative. [70] Galasiński, D. (2017). Language matters: a linguist’s view on medicine. Sexually Transmitted Infections 93 (7) 456-457.

Wardrope, A. (2015). Medicalization and epistemic injustice. Medicine, Health Care and Philosophy 18 (3) 341-352.

Werner, A., Isaksen, L.W. & Malterud, K. (2004). “I am not the kind of woman who complains of everything”: illness stories on self and shame in women with chronic pain. Social Science & Medicine 59, 1035-1045.

Anderson, E.S. (2012). Epistemic justice as a virtue of social institutions. Social Epistemology 26 (2) 163-173.

Bohman, J. (2012). Domination, epistemic injustice and republican epistemology. Social Epistemology 26 (2) 175-187.

Carel, H. & Györffy, G. (2014). Seen but not heard: children and epistemic injustice. Lancet 384 (9950) 1256-1257.

Dohmen, J. (2016). ‘A little of her language’: epistemic injustice and mental disability. Res Philosophica 93 (4) 669-691.

Lakeman, R. (2010). Epistemic injustice and the mental health service user. International Journal of Mental Health Nursing 19 (3) 151-153.

Sanati, A. & Kyratsous, M. (2015). Epistemic injustice in assessment of delusions. Journal of Evaluation in Clinical Practice 21 (3) 479-485.

Launer, J. (2005). Heart failure - or a failure of imagination? Postgraduate Medical Journal 93 (1101) 439-440.

Davis, N.A. (2005). Invisible disability. Ethics 116 (1) 153-213.

Ekstrom, L. (2012). Liars, medicine, and compassion. Journal of Medicine and Philosophy 37, 159-180.

Holm, S. (1993). What is wrong with compliance? Journal of Medical Ethics 19, 108-110.

Ware, N. (1992). Suffering and the social construction of illness: the delegitimation of illness experience in chronic fatigue syndrome. Medical Anthropology Quarterly 6, 347-361.

Jutel, A. (2010). Medically Unexplained Symptoms and the disease label. Social Theory & Health 8 (3) 229-245.

Thomas, L. (2012). Are your patient’s Medically Unexplained Symptoms really ‘all in her head’? Medical Hypotheses 78 (4) 542-547.

Blease, C., Carel, H. & Geraghty, K. (2017). Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome. Journal of Medical Ethics 43, 549-557.

Freud, S. (1968). A difficulty in the path of psycho-analysis (1917). In: The Standard Edition of the Complete Psychological Works of Sigmund Freud, trans. James Strachey, with Anna Freud, volume 17, pp. 140-143. London: Hogarth Press.




DOI: http://dx.doi.org/10.5750/ejpch.v8i3.1861

Refbacks

  • There are currently no refbacks.