How do patients know

Hastings Center Report

Volumn 37, Issue 5, 2007, Pages 27-35

  Kukla, Rebecca ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; ATTITUDE TO HEALTH; DECISION MAKING; HUMAN; HUMAN RELATION; INFORMATION RETRIEVAL; MEDICAL INFORMATICS; PATIENT PARTICIPATION; PERSONAL AUTONOMY;

DECISION MAKING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFORMATION STORAGE AND RETRIEVAL; MEDICAL INFORMATICS; PATIENT PARTICIPATION; PERSONAL AUTONOMY; PROFESSIONAL-PATIENT RELATIONS;

EID: 38449116001     PISSN: 00930334     EISSN: None     Source Type: Journal    
DOI: 10.1353/hcr.2007.0074     Document Type: Article

References (41)

1. R.R. Faden and T.L. Beauchamp, A History and Theory of Informed Consent (New York: Oxford University Press, 1986), 205.
2. Similarly, in their more recent touchstone work on the topic, J.W. Berg et al. note approvingly that their "account of informed consent as autonomous authorization is silent... on the question of how the patient or subject achieves the substantial understanding necessary to authorize the treatment or research plan." J.W. Berg, P.S. Appelbaum, L.S. Parker, et al., Informed Consent: Legal Theory and Clinical Practice, 2nd ed. (New York: Oxford University Press, 2001), 17.
3. In this paper, I often speak of "laypeople" as opposed to patients. My interest here is not so much in the dynamics of an acute crisis in which a debilitated patient has very little time to make a decision about consent and must rely on information delivered within the confines of the clinical encounter. Rather, I am concerned here with how people who are not medical professionals build their medical and health knowledge and deliberate about their health choices over an extended period of time, and how this extended process shapes clinical encounters.
4. Both fictional and nonfictional. In several of my classes, I have had students cite the television dramas House and Grey's Anatomy as sources of medical information.
5. Figure derived from statistics provided at www.cia.gov/cia/publications/ factbook.
6. J. Bernhardt and E. Felter, "Online Pediatric Information Seeking among Mothers of Young Children: Results from a Quantitative Study Using Focus Groups," Journal of Medical Internet Research 6, no. 1 (2004).
7. B. Landry, "Worried Sick on the Web," The Toronto Star, May 12, 2006.
8. E.G. Detlefsen, "Where Am I to Go? Use of the Internet for Consumer Health Information by Two Vulnerable Communities," Library Trends 53, no. 2 (2004).
9. In 1999, Alvin Goldman claimed that the Internet would soon outlive its usefulness as a layperson's epistemic tool because finding relevant information would become an insurmountably complex problem. After all, he pointed out for dramatic effect, an Internet search on the word "asthma" yielded over ninety thousand hits! A.I. Goldman, Knowledge in a Social World (Oxford, U.K.: Clarendon Press, 1999). In August 2006, the same search yielded 69,100,000 hits, and yet average users are fairly competent at navigating a path through all 69,100,000.
10. Bernhard and Felter, "Online Pediatric Information Seeking."
11. From www.fertilityfriends.com, cited in C. Belling, "Beginning in the Luteal Phase: Narrative Knowledge and Conception," presented at the American Society for Bioethics and the Humanities Annual
12. Meeting, Philadelphia, Penn., October 2004.
13. A.I. Goldman, Pathways to Knowledge: Private and Public (New York: Oxford University Press, 2002), 149.
14. R. Moran, "Getting Told and Being Believed," Philosophers'Imprint 5 (2005): 1-29, at 1.
15. J. Hardwig, "Epistemic Dependence," Journal of Philosophy 82, no. 7 (1985): 335-49.
16. Ibid., 340.
17. See my "Conscientious Autonomy: Displacing Decisions in Health Care," Hastings Center Report 35 no. 2 (2005): 34-44;
18. C. Mackenzie and N. Stoljar, Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (New York: Oxford University Press, 2000);
19. and C. McLeod, Self-Trust and Reproductive Autonomy (Basic Bioethics) (Cambridge, Mass.: MIT Press, 2002).
20. Because the trust we place in others is rationally necessary, it is all the more important that we be concerned with how much room there is for available information to be skewed by ideological and economic agendas. Health, medicine, and bodies are always going to be rich sites of cultural meaning, so the ideal of "pure" information not "infected" by culture is chimerical and naïve. However, this does not detract from the serious epistemological problem posed by conflicts of interest at the scientific, public health, and grassroots level. See my '"Paper Is Complete-Author TBD': The Death of the Author in Contemporary Scientific Research" (29th Annual Marston LaFrance Lecture, Carleton University 2007) for a close analysis of this issue.
21. See also Kukla, "Conscientious Autonomy."
22. H. Murkoff, A. Eisenberg, and S. Hathaway, What to Expect When You're Expecting, 3rd ed. (New York: Workman Publishing Company, 2002), 81.
23. McLeod (in Self-Trust) similarly points out that women are often discouraged from developing the ability to clarify their own values because of a ruling ideology of feminine self-subordination and selferasure.
24. Institute of Medicine, Health Literacy: A Prescription to End Confusion (Washington D.C.: National Academies Press, 2004).
25. See my Mass Hysteria: Medicine, Culture, and Mothers' Bodies (Lanham, Md.: Rowman & Littlefield, 2005)
26. B. Duden, Disembodying Women: Perspectives on Pregnancy and the Unborn (Cambridge, Mass.: Harvard University Press, 1993)
27. and L.M. Mitchell, Baby's First Picture: Ultrasound and the Politics of Fetal Subjects (Toronto, Ontario, Canada: University of Toronto Press, 2001) for discussions of the politics and ethical pitfalls of overwhelming pregnant women with information.
28. Bernhardt and Felter, "Online Pediatric Information Seeking."
29. The rhetoric of "routinization" is only one way that critical interrogation can be shut down. Examples abound, but another that I have explored elsewhere is the way that various highly contestable choices are rhetorically linked so powerfully with "good motherhood" (abstaining completely from alcohol during pregnancy, giving birth in a hospital, avoiding all infant formula in the first few months, "electing" for a scheduled cesarean birth after a previous cesarean, etc.) that many pregnant women and new mothers do not feel entitled to question their rationality in any serious way. See Kukla, Mass Hysteria.
30. E. Emmanuel and L. Emmanuel, "Four Models of the Physician-Patient Relationship," Journal of the American Medical Association 267 (1992): 323-9.
31. C. McLeod, reply to Kukla, letters section, Hastings Center Report 35, no. 5 (2005): 5.
32. A few decades ago, the prevailing model in bioethics portrayed moral knowledge as the mastery of a set of general principles. In recent years, bioethics has followed philosophical metaethics in emphasizing the crucial role of perception, discernment, and the lived experience of many particular cases in moral knowledge. Now even the bioethicists who have been most closely identified with "principlism" - the view that identifying a list of core principles that should guide bioethical reasoning is helpful - also emphasize that such principles are useless without finally-honed skills at applying them in judgment. These skills are the sort that can only come from careful and extended attention to particulars. See, for example, T. Beauchamp and J. Childress, Principles of Biomedical Ethics, 5th ed. (New York: Oxford University Press, 2001).
33. E. Murray, B. Lo, L. Pollack, et al., "The Impact of Health Information on the Internet on Health Care and the Physician-Patient Relationship: National U.S. Survey among 1,050 U.S. Physicians," Journal of Medical Internet Research 5, no. 3 (2003).
34. A classic study here is J. Lorber, "Good Patients and Problem Patients: Conformity and Deviance in a General Hospital," Journal of Health and Social Behavior 16 (1975): 213.
35. Thanks to an anonymous referee for reminding me of this study, and for drawing attention to more recent supporting evidence-for example, T. Stokes, M. Dixon-Woods, K.C. Windrage, et al., "Patients' Accounts of Being Removed from Their General Practitioner's List: Qualitative Study," British Medical Journal 326 (2003): 1316-21. The idea that the "system" judges patients who do not accept medical authority to be pathological has plenty of popular appeal and has been iconized in One Flew Over the Cuckoo's Nest and other pop cultural sources.
36. It counts as a species of "factitious disorder."
37. M. Talbot, "The Bad Mother," New Yorker, August 9, 2004.
38. Ibid.
39. This in no way suggests that these diagnoses only serve this purpose, nor that this is their conscious intent.
40. For instance, see R. Davis-Floyd and C.F. Sargent, Childbirth and Authoritative Knowledge: Cross-Cultural Perspectives (Berkeley, Calif.: University of California Press, 1997).
41. An obvious example is direct-marketing pharmaceutical advertisements that encourage patients to "ask their doctor" about - or, more truthfully, for - a particular drug. But there are far subtler ways in which patients' prior medical knowledge may have been distorted by cultural messages, online peer pressure, and so forth.