Abstract
Most medical models of end-of-life decision making by patients assume a rational autonomous adult obtaining and deliberating over information to arrive at some conclusion. If the patient is deemed incapable of this, family members are often nominated as substitutes, with assumptions that the family are united and rational. These are problematic assumptions. We interviewed 23 outpatients with cancer about the decision not to resuscitate a patient following cardiopulmonary arrest and examined their accounts of decision making using discourse analytical techniques. Our analysis suggests that participants access two different interpretative repertoires regarding the construct of persons, invoking a ‘modernist’ repertoire to assert the appropriateness of someone, a patient or family, making a decision, and a ‘romanticist’ repertoire when identifying either a patient or family as ineligible to make the decision. In determining the appropriateness of an individual to make decisions, participants informally apply ‘Sanity’ and ‘Stability’ tests, assessing both an inherent ability to reason (modernist repertoire) and the presence of emotion (romanticist repertoire) which might impact on the decision making process. Failure to pass the tests respectively excludes or excuses individuals from decision making. The absence of the romanticist repertoire in dominant models of patient decision making has ethical implications for policy makers and medical practitioners dealing with dying patients and their families.
References
Arena, F. P., Treanor, S., and Killackey, D. (1991). The aftermath of the do not resuscitate (DNR) decision: The surrogates' dilemma.Proceedings of the American Society for Clinical Oncology11: Abstract 1410.Search in Google Scholar
Beauchamp, T. L. and Childress, J. F. (1994). Principles of Biomedical Ethics, 4th ed. New York, NY: Oxford.Search in Google Scholar
Becker, E. (1973). The Denial of Death. New York, NY: Free Press.Search in Google Scholar
Berghmans, R. L. P. and Widdershoven, G. A. M. (2003). Ethical perspectives on decision making capacity and consent for treatment and research. Medicine & Law22: 391–400.Search in Google Scholar
Billig, M. (1991). Ideology and Opinions: Studies in Rhetorical Psychology. London: Sage.Search in Google Scholar
Billig, M. (1996). Arguing and Thinking: A Rhetorical Approach to Social Psychology. Cambridge: Cambridge University Press.Search in Google Scholar
Billig, M., Condor, S., Edwards, D., Gane, M., Middleton, D., and Radley, A. (1988). Ideological Dilemmas: Social Psychology of Everyday Thinking. London: Sage.Search in Google Scholar
Blustein, J. (1995). The family in medical decision making. In Life Choices: A Hastings Center Introduction to Bioethics, J. H. Howell and W. F. Sale (eds.), 68–83. Washington, DC: Georgetown University Press.Search in Google Scholar
Bramstedt, K. A. (2003). Ethics in medicine: Questioning the decision making capacity of surrogates. Internal Medicine Journal33: 257–259.Search in Google Scholar
Brock, D. W. (1994). Good decision making for incompetent patients. Hastings Center Report26 (6 Supplement): S8–S11.Search in Google Scholar
Buckman, R. (1984). Breaking bad news: Why is it still so difficult. British Medical Journal288: 1597–1599.Search in Google Scholar
Callahan, S. (2000). The role of emotion in ethical decision making. In Life Choices: A Hastings Center Introduction to Bioethics, J. H. Howell and W. F. Sale (eds.), 23–35. Washington, DC: Georgetown University Press.Search in Google Scholar
Cook, D. (2001). Patient autonomy versus parentalism. Critical Care Medicine29 (2 Supplement): 24–25.Search in Google Scholar
Dawes, R. M. (1988). Rational Choice in an Uncertain World. New York, NY: Harcourt Brace Jovanovich.Search in Google Scholar
Delvecchio-Good, M. G., Good, B. J., Schaffer, C., and Lind, S. E. (1990). American oncology and the discourse on hope. Culture, Medicine, & Psychiatry14 (1): 59–79.Search in Google Scholar
Ditillo, B. A. (2002). Should there be a choice for cardiopulmonary resuscitation when death is expected? Revisiting an old idea whose time is yet to come. Journal of Palliative Medicine5 (1): 107–116.Search in Google Scholar
Dodds, S. (2000). Choice and control in feminist bioethics. In Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, C. Mackenzie and N. Stoljar (eds.), 213–235. New York, NY: Oxford University Press.Search in Google Scholar
Donchin, A. (2000). Autonomy and interdependence: Quandaries in genetic decision making. In Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, C. Mackenzie and N. Stoljar (eds.), 236–258. New York: Oxford University Press.Search in Google Scholar
Dubler, N. N. and Post, L. F. (1998). Truth telling and informed consent. In Psycho-oncology, J. C. Holland (ed.), 1085–1095. New York, NY: Oxford University Press.Search in Google Scholar
Edley, N. (2001). Analysing masculinity: Interpretative repertoires, ideological dilemmas and subject positions. In Discourse as Data: A Guide for Analysis, M. Wetherell, S. Taylor, and S. J. Yates (eds.), 189–228. London: Sage.Search in Google Scholar
Edwards, D. (1999). Emotion discourse. Culture & Psychology5 (3): 271–291.Search in Google Scholar
Eliott, J. and Olver, I. N. (2003a). Legitimating do-not-resuscitate orders: A discursive study of cancer patients' speech. Journal of Palliative Care6 (1): 59–68.10.1089/10966210360510127Search in Google Scholar
Eliott, J. and Olver, I. N. (2003b). Perceptions of ‘Good Palliative Care’ orders: A discursive study of cancer patients' comments. Journal of Palliative Medicine6 (1): 59–68.10.1089/10966210360510127Search in Google Scholar
Emanuel, E. J. (1998). Ethics of treatment: Palliative and terminal care. In Psycho-oncology, J. C. Holland (ed.), 1096–1111. New York, NY: Oxford University Press.Search in Google Scholar
Emanuel, E. J. and Emanuel, L. L. (1992). Four models of the physician–patient relationship. Journal of the American Medical Association267: 2221–2226.Search in Google Scholar
Fallowfield, L. J., Jenkins, V. A., and Beveridge, H. A. (2002). Truth may hurt but deceit hurts more: Communication in palliative care. Palliative Medicine16: 297–303.Search in Google Scholar
Frank, G., Blackhall, L. J., Michel, V., Murphy, S. T., Azen, S. P., and Park, K. (1998). A discourse of relationships in bioethics: Patient autonomy and end-of-life decision making among elderly Korean Americans. Medical Anthropology Quarterly12 (4): 403–423.Search in Google Scholar
Friedman, M. (2000). Autonomy, social disruption, and women. In Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, C. Mackenzie and N. Stoljar (eds.), 35–51. New York, NY: Oxford University Press.Search in Google Scholar
Gergen, K. J. (1991). The Saturated Self: Dilemmas of Identity in Contemporary Life. New York, NY: Basic Books.Search in Google Scholar
Gergen, K. J. (1999). An Invitation to Social Construction. London: Sage.Search in Google Scholar
Gert, B. (1998). Morality: Its Nature and Justification. New York, NY: Oxford University Press.Search in Google Scholar
Gillon, R. (1994). Principles of Health Care Ethics. Chichester: John Wiley.Search in Google Scholar
Grbich C. (1999). Qualitative Research in Health: An Introduction. St Leonards, NSW: Allen and Unwin.Search in Google Scholar
Grisso, T. and Appelbaum, P. S. (1995). Comparison of standards for assessing patients' capacities to make treatment decisions. American Journal of Psychiatry152 (7): 1033–1037.Search in Google Scholar
Haviland-Jones, J. M. and Kahlbaugh, P. (2000). Emotion and identity. In Handbook of Emotions, 2nd ed., M. Lewis and J. M. Haviland-Jones (eds.), 293–305. London: The Guilford Press.Search in Google Scholar
High, D. M. (1988). All in the family: Extended autonomy and expectations in surrogate health care decision making. Gerontologist28: 46–50.Search in Google Scholar
Hines, S. C., Glover, J. J., Babrow, A. S., Holley, J. L., Badzek, L. A., and Moss, A. H. (2001). Improving advance care planning by accommodating family preferences. Journal of Palliative Medicine4 (4): 481–489.Search in Google Scholar
Howell, J. H. and Sale, W. F. (1995). Foreword. In Life Choices: A Hastings Center Introduction to Bioethics, Part II: Biomedicine, Rights, and Responsibilities. J. H. Howell and W. F. Sale (eds.), 53–56. Washington, DC: Georgetown University Press.Search in Google Scholar
Janis, I. L. (1984). The patient as decision maker. In Handbook of Behavioural Medicine. W. D. Gentry (ed.), 326–368. New York: Guilford Press.Search in Google Scholar
Johnson-Laird, P. N. and Oatley, K. (2000). Cognitive and social construction in emotions. In Handbook of Emotions, 2nd ed., M. Lewis and J. M. Haviland-Jones (eds.), 458–475. London: The Guilford Press.Search in Google Scholar
Lewins, F. (1996). Bioethics for Health Professionals: An Introduction and Critical Approach. South Melbourne: MacMillan Education Australia.Search in Google Scholar
Lupton, D. (1994). Medicine as Culture: Illness, Disease and the Body in Western Societies. London: Sage.Search in Google Scholar
Lupton, D. (1998). The Emotional Self. London: Sage.Search in Google Scholar
Mackenzie, C. and Stoljar, N. (2000). Introduction: Autonomy refigured. In Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self, C. Mackenzie and N. Stoljar (eds.), 3–31. New York: Oxford University Press.Search in Google Scholar
Macklin, R. (1983). Philosophical conceptions of rationality and psychiatric notions of competency. Synthese57: 205–224.Search in Google Scholar
Marchette, L., Box, N., Hennessy, M., Wasserlauf, M., Arnall, B., Copeland, D., and Habib, K. (1993). Nurses' perceptions of the support of patient autonomy in do-not-resuscitate (DNR) decisions. International Journal of Nursing Studies30 (1): 37–49.Search in Google Scholar
Marta, J. (1998). Whose consent is it anyway? A poststructuralist framing of the person in medical decision making. Theoretical Medicine & Bioethics19: 353–370.Search in Google Scholar
Meyers, D. T. (1987). The socialized individual and individual autonomy: An intersection between philosophy and psychology. In Women and Moral Theory, E. F. Kittay and D. T. Meyers (eds.), 139–153. Lanham, MD: Rowan and Littlefield.Search in Google Scholar
Miyaji, N. T. (1993). The power of compassion: Truth-telling among American doctors in the care of dying patients. Social Science in Medicine36 (3): 249–264.Search in Google Scholar
Moreno, J. D. (1993). Who's to choose? Surrogate decision making in New York State. Hastings Centre Report23 (1): 5–11.Search in Google Scholar
Olver, I. N., Eliott, J. A., and Blake-Mortimer, J. (2002). Cancer patients' perceptions of Do Not Resuscitate Orders. PsychoOncology11 (3): 181–187.Search in Google Scholar
Ott, B. B. and Neiswiadomy, R. M. (1991). Support of patient autonomy in the do-not-resuscitate decision. Heart & Lung20 (1): 66–72.Search in Google Scholar
Pearlman, R. A., Miles, S. H., and Arnold, R. M. (1993). Contributions of empirical research to medical ethics. Theoretical Medicine14: 197–210.Search in Google Scholar
Potter, J. and Wetherell, M. (1987). Discourse and Social Psychology: Beyond Attitudes and Behaviour. London: Sage.Search in Google Scholar
Prior, L. (1989). The Social Organisation of Death: Social Medical Discourse and Social Practice in Belfast. Basingstoke: MacMillan.10.1007/978-1-349-19918-1Search in Google Scholar
Qualitative Solutions and Research. (1997). QSR NUD*IST (Version 4) [Windows]. Melbourne: Qualitative Solutions and Research.Search in Google Scholar
Roy, R. (1999). Beyond ego's domain: Emotion, rationality and prajnana. Psychology & Developing Societies11: 1–24.Search in Google Scholar
Sayers, G. M., Schofield, I., and Aziz, M. (1997). An analysis of CPR decision making by elderly patients. Journal of Medical Ethics23 (4): 207–212.Search in Google Scholar
Schneider, C. E. (1998). The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press.Search in Google Scholar
Schofield, P. E., Butow, P. N., Thompson, J. F., Tattersall, M. H. N., Beeney, L. J., and Dunn, S. M. (2003). Psychological responses of patients receiving a diagnosis of cancer. Annals of Oncology14: 48–56.Search in Google Scholar
Sherwin, S. (1998). A relational approach to autonomy in health-care. In The Politics of Women's Health: Exploring Agency and Autonomy, S. Sherwin (ed.), 19–47. Philadelphia: Temple University Press.Search in Google Scholar
Simon, H. A. (1990). Alternative visions of rationality. In Rationality in Action: Contemporary Approaches, P. K. Moser (ed.), 189–204. Cambridge: Cambridge University Press.10.1515/9780804766685-002Search in Google Scholar
Solomon, R. C. (2000). The philosophy of emotions. In Handbook of Emotions, 2nd ed., M. Lewis and J. M. Haviland-Jones (eds.), 3–15. London: The Guilford Press.Search in Google Scholar
Stauch, M. (1995). Rationality and the refusal of medical treatment: A critique of the recent approach of the English courts. Journal of Medical Ethics21 (3): 162–165.Search in Google Scholar
Taylor, S. (2001). Locating and conducting discourse analytic research. In Discourse as Data: A Guide for Analysis, M. Wetherell, S. Taylor, and S. J. Yates. (eds.), 5–48. London: Sage.Search in Google Scholar
The American Heritage Dictionary of the English Language, 4th ed. (2000). Houghton Mifflin Company [Electronic version]. http://dictionary.reference.com/search?q=rational (Accessed 14 August 2003.)Search in Google Scholar
Williams, R. (1993). The ‘do not resuscitate’ decision: Guidelines for policy in the adult. Journal of the Royal College of Physicians of London27 (2): 139–140.Search in Google Scholar
© by Walter de Gruyter Berlin New York
