Patient autonomy and the challenge of clinical uncertainty

Kennedy Institute of Ethics Journal

Volumn 12, Issue 3, 2002, Pages 245-264

  Parascandola, Mark ^a   Hawkins, Jennifer ^a   Danis, Marion ^a  

^a NONE

Author keywords

[No Author keywords available]

Indexed keywords

ANALYTICAL APPROACH; ARTICLE; BENEFICENCE; DOCTOR PATIENT RELATION; EMOTION; ETHICS; HUMAN; INTERPERSONAL COMMUNICATION; PATIENT PARTICIPATION; PATIENT SATISFACTION; PERSONAL AUTONOMY; PROBABILITY; PROFESSIONAL PATIENT RELATIONSHIP; PROGNOSIS; PSYCHOLOGICAL ASPECT; TRUST; UNCERTAINTY;

ANALYTICAL APPROACH; PROFESSIONAL PATIENT RELATIONSHIP;

BENEFICENCE; COMMUNICATION; DISCLOSURE; EMOTIONS; HUMANS; PATIENT PARTICIPATION; PATIENT SATISFACTION; PERSONAL AUTONOMY; PHYSICIAN-PATIENT RELATIONS; PROBABILITY; PROGNOSIS; TRUST; TRUTH DISCLOSURE; UNCERTAINTY;

EID: 0036730597     PISSN: 10546863     EISSN: None     Source Type: Journal    
DOI: 10.1353/ken.2002.0018     Document Type: Article

References (57)

1. Asch, Daniel A.; Hansen-Flaschen, John; and Lanken, Paul N. 1995. Decisions to Limit or Continue Life Sustaining Treatment by Critical Care Physicians in the United States: Conflicts Between Physicians' Practices and Patients' Wishes. American Journal of Respiratory and Critical Care Medicine 151: 288-92.
2. Atkinson, Paul. 1984. Training for Certainty. Social Science & Medicine 19: 949-56.
3. Baumann, Andrea O.; Deber, Raisa B.; and Thompson, Gail G. 1991. Overconfidence among Physicians and Nurses: The "Micro-Certainty, Macro-Uncertainty" Phenomenon. Social Science & Medicine 32: 167-74.
4. Braden, Carrie Jo; Mishel, Merle H.; and Longman, Alice J. 1998. Self-Help Intervention Project: Women Receiving Breast Cancer Treatment. Cancer Practice 6: 87-98.
5. Brock, Dan W. 1991. The Ideal of Shared Decision Making Between Physicians and Patients. Kennedy Institute of Ethics Journal 1: 28-47.
6. Brody, Howard. 1989. Transparency: Informed Consent in Primary Care. Hastings Center Report 19 (5): 5-9.
7. Bryant, G. D., and Norman, G. R. 1980. Expressions of Probability: Words and Numbers. New England Journal of Medicine 302: 411.
8. Buchanan, Allen E., and Brock, Dan W. 1989. Deciding for Others: The Ethics of Surrogate Decision Making. New York: Cambridge University Press.
9. Bursztajn, Harold; Feinbloom, Richard I.; Hamm, Robert M.; and Brodsky, Archie. 1981. Medical Choices, Medical Chances: How Patients, Families, and Physicians Can Cope with Uncertainty. New York: Delacorte Press.
10. Chase, Gary A.; Faden, Ruth R.; Holtzman, Neil A.; et al. 1986. Assessment of Risk by Pregnant Women: Implications for Genetic Counseling and Education. Social Biology 33: 57-64.
11. Christakis, Nicholas A. 1999. Death Foretold: Prophecy and Prognosis in Medical Care. Chicago: University of Chicago Press.
12. Deane, K. A., and Degner, L. E 1998. Information Needs, Uncertainty, and Anxiety in Women Who Had a Breast Biopsy with Benign Outcome. Cancer Nursing 21: 117-26.
13. Degner, Lesley E, and Sloan, Jeffrey A. 1992. Decision-Making During Serious Illness: What Role Do Patients Really Want to Play? Journal of Clinical Epidemiology 45: 941-50.
14. Dow, Karen H; Ferrell, Betty R.; Leigh, Susan; et al. 1996. An Evaluation of the Quality of Life among Long-Term Survivors of Breast Cancer. Breast Cancer Research and Treatment 39: 261-73.
15. Emanuel, Ezekiel J., and Emanuel, Linda L. 1992. Four Models of the Physician-Patient Relationship. JAMA 267: 2221-26.
16. Ende, Jack; Kazis, Lewis; Ash, Arlene; and Moskowitz, Mark A. 1989. Measuring Patients' Desire for Autonomy: Decision-Making and Information Seeking Preferences Among Medical Patients. Journal of General Internal Medicine 4: 23-30.
17. Faden, Ruth R., and Beauchamp, Tom L. 1986. A History and Theory of Informed Consent. New York: Oxford University Press.
18. Fanos, Joanna H., and Johnson, John P. 1995. Perception of Carrier Status by Cystic Fibrosis Siblings. American journal of Human Genetics 57: 431-38.
19. Forrow, L.; Taylor, W. C.; and Arnold, R. A. 1988. Manner of Summarizing Study Results Affects Physicians' Reported Treatment Decisions [Abstract]. Clinical Research 36: 711A.
20. Fox, Renée. 1959. Experiment Perilous: Physicians and Patients Facing the Unknown. Glencoe, IL: Free Press.
21. _. 1980. The Evolution of Medical Uncertainty. Milbank Memorial Fund Quarterly 58: 1-49.
22. Germino, Barbara B.; Mishel, Merle H.; Belyea, Michael; et al. 1998. Uncertainty in Prostate Cancer: Ethnic and Family Patterns. Cancer Practice 6: 107-13.
23. Gerrity, Martha S.; Earp, Jo Anne L.; and DeVellis, Robert F. 1992. Uncertainty and Professional Work: Perceptions of Physicians in Clinical Practice. American Journal of Sociology 97: 1022-51.
24. Gordon, Geoffrey H.; Joos, Sandra K.; and Byrne, Jennifer. 2000. Physician Expressions of Uncertainty During Patient Encounters. Patient Education and Counseling 40: 59-65.
25. Hewson, Mariana G.; Kindy, Phillips J.; Van Kirk, Judith; et al. 1996. Strategies for Managing Uncertainty and Complexity. Journal of General Internal Medicine 11: 481-85.
26. Houston, W. R. 1938. The Doctor Himself as Therapeutic Agent. Annals of Internal Medicine 11: 1415.
27. Johnson, Clifford G.; Levenkron, Jeffrey C.; Suchman, Anthony L.; and Manchester, Ralph. 1988. Does Physician Uncertainty Affect Patient Satisfaction? Journal of General Internal Medicine 3: 144-49.
28. Kash, K. M.; Holland, J. C.; Osborne, M. P.; and Miller, D. G. 1995. Psychological Counseling Strategies for Women at Risk of Breast Cancer. Journal of the National Cancer Institute Monographs 17: 73-79.
29. Katz, Jay. 1984. The Silent World of Doctor and Patient. New York : Free Press.
30. _. 1994. Informed Consent - Must it Remain a Fairy Tale? Journal of Contemporary Health Law Policy 10: 69-91.
31. Kong, Augustine; Barnett, G. Octo; Mosteller, Frederick; and Youtz, Cleo. 1986. How Medical Professionals Evaluate Expressions of Probability. New England Journal of Medicine 315: 740-44.
32. Kostbade, Hughes K.; Elstein, A. R.; and Chapman, G. 1994. Decision Support for Patients with Breast Cancer. Innovations in Oncology Nursing 10: 18-21.
33. Lerman, Caryn; Daly, Mary B.; Sands, C.; et al. 1993. Mammography Adherence and Psychological Distress among Women at Risk for Breast Cancer. Journal of the National Cancer Institute 85: 1074-80.
34. Lerman, Caryn; Lustbader, Edward; Rimer, Barbara; et al. 1995. Effects of Individualized Breast Cancer Risk Counseling: A Randomized Trial. Journal of the National Cancer Institute 87: 286-92.
35. Lippman-Hand, A.; and Fraser, F. Clarke. 1979. Genetic Counseling - The Postcounseling Period: I. Parents' Perceptions of Uncertainty. American Journal of Medical Genetics 4: 51-71.
36. Mapes, Roy E. A. 1979. Verbal and Numerical Estimates of Probability in Therapeutic Contexts. Social Science & Medicine 13A: 277-82.
37. Mast, M. E. 1998. Suvivors of Breast Cancer: Illness Uncertainty, Positive Reappraisal, and Emotional Distress. Oncology Nursing Forum 25: 555-62.
38. McKinley, Elizabeth D. 2000. Under Toad Days: Surviving the Uncertainty of Cancer Recurrence. Annals of Internal Medicine 133: 479-80.
39. McNeil, Barbara J.; Pauker, Stephen G.; Sox, Harold C.; and Tversky, Amos. 1982. On the Elicitation of Preferences for Alternative Therapies. New England Journal of Medicine 306: 1259-62.
40. Meiser, B.; Butow, P.; Baratt, A.; et al. 1999. Attitudes Toward Prophylactic Oophorectomy and Screening Utilization in Women at Increased Risk of Developing Hereditary Breast/Ovarian Cancer. Gynecological Oncology 75: 122-29.
41. Mishel, Merle H. 1997. Uncertainty in Acute Illness. In Annual Review of Nursing Research, vol. 15, ed. Joyce J. Fiztpatrick and Jane Norbeck, pp. 57-80. New York: Springer.
42. Morgan, M. Granger, and Henrion, M. 1990. Uncertainty: A Guide to Dealing with Uncertainty in Quantitative Risk and Policy Analysis. Cambridge: Cambridge University Press.
43. Mort, Elizabeth A. 1996. Clinical Decision-Making in the Face of Scientific Uncertainty: Hormone Replacement Therapy as an Example. Journal of Family Practice 42: 147-51.
44. Moskowitz, Alan J.; Kuipers, Benjamin J.; and Kassirer, Jerome P. 1988. Dealing with Uncertainty, Risks, and Tradeoffs in Clinical Decisions. Annals of Internal Medicine 108: 435-49.
45. National Cancer Institute. 2000. Breast Cancer Risk Assessment Tool. Available at http://bcra.nci.nih.gov/brcl.
46. Nease, Robert E, Jr., and Brooks, W. Blair. 1995. Patient Desire for Information and Decision-Making in Health Care Decisions: The Autonomy Preference Index and the Health Opinion Survey. Journal of General Internal Medicine 10: 593-600.
47. Novack, Dennis H.; Plumer, Robin; Smith, Raymond L.; et al. 1979. Changes in Physicians' Attitudes Toward Telling the Cancer Patient. JAMA 241: 897-900.
48. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1982. Making Health Care Decisions. Washington, DC: U.S. Government Printing Office.
49. Redelmeier, Donald A.; Rozin, Paul; and Kahneman, Daniel. 1993. Understanding Patients' Decisions: Cognitive and Emotional Perspectives. JAMA 270: 72-76.
50. Reese, David M. 2000. Choice of Hormonal Therapy for Prostate Cancer. Lancet 355: 1474-75.
51. Schneider, Carl. 1998. The Practice of Autonomy: Patients, Doctors and Medical Decisions. New York: Oxford University Press.
52. Southerland, Heather J.; Llewwellyn-Thomas, Hilary A.; Lockwood, G. A.; et al. 1989. Cancer Patients: Their Desire for Information and Participation in Treatment Decisions. Journal of the Royal Society of Medicine 82: 260-63.
53. Strull, William M.; Lo, Bernard; and Charles, Gerald. 1984. Do Patients Want to Participate in Medical Decision-Making? JAMA 252: (21): 2990-94.
54. Truog, Robert D.; Robinson, Walter; Randolph, Adrienne; and Morris, Alan. 1999. Is Informed Consent Always Necessary for Randomized, Controlled Trials? New England Journal of Medicine 340: 804-6.
55. Tversky, Amos, and Kahneman, Daniel. 1974. Judgement under Uncertainty: Heuristics and Biases. Science 185: 1124-31.
56. Wennberg, John E.; Barnes, Benjamin A.; and Zubkoff, Michael. 1982. Professional Uncertainty and the Problem of Supplier Induced Demand. Social Science & Medicine 16: 811-24.
57. Windschitl, Paul D., and Weber, Elke U. 1999. The Interpretation of "Likely" Depends on Context, But "70%" Is 70% Right? The Influence of Associative Processes on Perceived Certainty. Journal of Experimental Psychology 25: 1514-33.