Abstract
Medicine’s traditional doctor-oriented paternalism has declined rapidly in most Western countries. The rising level of the general public’s education and the simultaneous assertion of personal rights have prompted patients to demand more involvement than ever before in decisions about their care. Many patients want both information and decision-making authority. Numerous studies document this new attitude: Many patients say they want some control, partial or full, over treatment decisions, and only a few patients say they want to maintain sole doctor control. Patient autonomy has, therefore, become medicine’s dominant decision-making ethic, making patient assessments of treatments critically important in end-of-life care.
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References
Blanchard CG, Labrecque MS, Ruckdeschel JC, Blanchard EB. Information and decision-making preferences of hospitalized adult cancer patients. Soc Sci Med. 1988;27(11):1139–45.
Mazur DJ, Hickam DH. Patients’ preferences for risk disclosure and role in decision making for invasive medical procedures. J Gen Intern Med. 1997;12(2):114–7.
Kraetschmer N, Sharpe N, Urowitz S, Deber RB. How does trust affect patient preferences for participation in decision-making? Health Expect. 2004;7(4):317–26.
Flynn KE, Smith MA, Vanness D. A typology of preferences for participation in health-care decision-making. Soc Sci Med. 2006;63(5):1158–69.
Ainslie N, Beisecker AE. Changes in decisions by elderly persons based on treatment description. Arch Intern Med. 1994;154(19):2225–33.
Gattellari M, Voigt KJ, Butow PN, Tattersall MHN. When the treatment goal is not cure: Are cancer patients equipped to make informed decisions? J Clin Oncol. 2002;20(2):503–13.
McNutt RA. Shared medical decision making: problems, process, progress. JAMA. 2004;292(20):2516–8.
Arora NK, McHorney CA. Patient preferences for medical decision making: Who really wants to participate? Med Care. 2000;38(3):335–41.
Degner LF, Aquino Russell C. Preferences for treatment control among adults with cancer. Res Nurs Health. 1988;11(6):367–74.
Deber RB, Kraetschmer N, Irvine J. What role do patients wish to play in treatment decision making? Arch Intern Med. 1996;156(13):1414–20.
Keating NL, Landrum MB, Arora NK, et al. Cancer patients’ roles in treatment decisions: Do characteristics of the decision influence roles? J Clin Oncol. 2010;28(28):4364–70.
Barry MJ, Edgman-Levitan S. Shared decision making—the pinnacle of patient-centered care. N Engl J Med. 2012;366(9):780–1.
Sullivan M. The new subjective medicine: taking the patient’s point of view on health care and health. Soc Sci Med. 2003;56(7):1595–604.
White RB. Case studies in bioethics, case no. 228: a demand to die. Hast Cen Rep. 1975;5(3):9–10.
Baile WF, Buckman R, Lenzi R, et al. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302–11.
Clayton JM, Butow PN, Tattersall MHN. When and how to initiate discussion about prognosis and EOL issues with terminally ill patients. J Pain Symptom Manage. 2005;30(2):132–44.
Girgis A, Sanson-Fisher RW. Breaking bad news: consensus guidelines for medical practitioners. J Clin Oncol. 1995;13(9):2449–56.
Fox E, Arnold R, Brody B. Medical ethics education: past, present and future. Yale curriculum in ethical and humanistic medicine. Acad Med. 1995;70(9):761–9.
Morris DA, Johnson KS, Ammarell N, et al. What is your understanding of your illness? A communication tool to explore patients’ perspectives of living with advanced illness. J Gen Intern Med. 2012;27(11):1460–6.
Coulehan JL, Platt FW, Egener B, et al. “Let me see if I have this right …”: Words that help build empathy. Ann Intern Med. 2001;135(3):221–7.
Wenrich MD, Curtis RJ, Shannon SE, et al. Communicating with dying patients within the spectrum of medical care from terminal diagnosis to death. Arch Intern Med. 2001;161(6):868–74.
Balaban RB. A physician’s guide to talking about end-of-life care. J Gen Intern Med. 2000;15(3):195–200.
Quill TE, Townsend P. Bad news: delivery, dialogue, and dilemmas. Arch Intern Med. 1991;151(3):463–8.
Quill TE, Arnold RM, Platt F. “I wish things were different”: expressing wishes in response to loss, futility, and unrealistic hopes. Ann Intern Med. 2001;135(7):551–5.
Fallowfield L. Giving sad and bad news. The Lancet. 1993;341(8843):476–8 (20 Feb).
The Hippocratic Oath, fourth century, B.C.
American Medical Association. Principles of Medical Ethics, 1980.
Pearlman RA, Jonsen AR. The use of quality-of-life considerations in medical decision-making. J Am Geriatri Soc. 1985;33(5):344–52.
Steinhauser KE, Christakis NA, Clipp EC, et al. Preparing for the end of life: preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001;22(3):727–37.
Steinhauser KE, Clipp EC, McNeilly M, et al. In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000;132(10):825–32.
Perkins HS, Geppert CMA, Gonzales A, et al. Cross-cultural similarities and differences in attitudes about advance care planning. J Gen Intern Med. 2002;17(1):48–57.
Singer PA, Martin DK, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281(2):163–8.
Perkins HS, Cortez JD, Hazuda HP. Patients’ diverse beliefs about what happens at the time of death. J Hosp Med. 2012;7(2):110–6.
Perkins HS, Cortez JD, Hazuda HP. Diversity of patients’ beliefs about the soul after death and their importance in end-of-life care. South Med J. 2012;105(5):266–72.
Lynn J. Measuring quality of care at the end of life: a statement of principles. J Am Geriatr Soc. 1997;45(4):526–7.
Field MJ, Cassel CK, editors. Approaching death: improving care at the end of life. Washington, D.C: National Academy Press; 1997.
Emanuel EJ, Emanuel LL. The promise of a good death. Lancet. 1998;351(Suppl 2):21–9.
Steinhauser KE, Christakis NA, Clipp EC, et al. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.
Perkins HS, Cortez JD, Hazuda HP. Cultural beliefs about a patient’s right time to die: an exploratory study. J Gen Intern Med. 2009;24(11):1240–7.
Slevin ML, Stubbs L, Plant HJ, et al. Attitudes to chemotherapy: comparing views of patients with cancer with those of doctors, nurses, and general public. BMJ. 1990;300(6737):1458–60 (02 June).
Matsuyama R, Reddy S, Smith TJ. Why do patients choose chemotherapy near the end of life? A review of the perspective of those facing death from cancer. J Clin Oncol. 2006;24(21):3490–6.
Mitera G, Zhang L, Sahgal A, et al. A survey of expectations and understanding of palliative radiotherapy from patients with advanced cancer. Clin Oncol. 2012;24(2):134–8.
Weeks JC, Catalano PJ, Cronin A, et al. Patients’ expectations about effects of chemotherapy for advanced cancer. N Engl J Med. 2012;367(17):1616–25.
Taffet GE, Teasdale TA, Luchi RJ. In-hospital cardiopulmonary resuscitation. JAMA. 1988;260(14):2069–72.
Vitelli CE, Cooper K, Rogatko A, Brennan MF. Cardiopulmonary resuscitation and the patient with cancer. J Clin Oncol. 1991;9(1):111–5.
Arber S, Vandrevala T, Daly T, Hampson S. Understanding gender differences in older people’s attitudes towards life-prolonging medical technologies. J Aging Stud. 2008;22(4):366–75.
Froberg DG, Kane RL. Methodology for measuring health-state preferences—II. Scaling methods. J Clin Epidemiol. 1989;42(5):459–71.
Pearlman RA, Cain KC, Patrick DL, et al. Insights pertaining to patient assessments of states worse than death. J Clin Ethics. 1993;4(1):33–41.
Patrick DL, Starks HE, Cain KC, Uhlmann RF, Pearlman RA. Measuring preferences for health states worse than death. Med Decis Mak. 1994;14(1):9–18.
Hendin H. Selling death and dignity. Hast Cen Rep. 1995;25(3):19–22.
Chochinov HM, Hack T, Hassard T, et al. Dignity in the terminally ill: a cross-sectional cohort study. Lancet. 2002;360(9350):2026–30 (21/28 Dec).
Vanderpool HY. The ethics of terminal care. JAMA. 1978;239(9):850–2.
Shultz DS, Carnevale FA. Engagement and suffering in responsible caregiving: on overcoming maleficence in health care. Theor Med. 1996;17(3):189–207.
Danis M, Garrett J, Harris R, Patrick DL. Stability of choices about life-sustaining treatments. Ann Intern Med. 1994;120(7):567–73.
Ganzini L, Lee MA, Heintz RT, Bloom JD, Fenn DS. The effect of depression treatment on elderly patients’ preferences for life-sustaining medical therapy. Am J Psychiatry. 1994;151(11):1631–6.
Rosenfeld KE, Wenger NS, Phillips RS, et al. Factors associated with change in resuscitation preference of seriously ill patients. Arch Intern Med. 1996;156(14):1558–64.
Ditto PH, Smucker WD, Danks JH, et al. Stability of older adults’ preferences for life-sustaining medical treatment. Health Psych. 2003;22(6):605–15.
Everhart MA, Pearlman RA. Stability of patient preferences regarding life-sustaining treatments. Chest. 1990;97(1):159–64.
Lockhart LK, Ditto PH, Danks JH, Coppola KM, Smucker WD. The stability of older adults’ judgments of fates better and worse than death. Death Studies. 2001;25(4):299–317.
McParland E, Likourezos A, Chichin E, Castor T, Paris BEC. Stability of preferences regarding life-sustaining treatment: a two-year prospective study of nursing home residents. Mt Sinai J Med. 2003;70(2):85–92.
Ditto PH, Jacobson JA, Smucker WD, Danks JH, Fagerlin A. Context changes choices: a prospective study of the effects of hospitalization on life-sustaining treatment preferences. Med Decis Making. 2006;26(4):313–22.
Sehgal A, Galbraith A, Chesney M, et al. How strictly do dialysis patients want their advance directives followed? JAMA. 1992;267(1):59–63.
McKinley ED, Garrett JM, Evans AT, Danis M. Differences in end-of-life decision making among black and white ambulatory cancer patients. J Gen Intern Med. 1996;11(11):651–6.
Blackhall LJ, Frank G, Murphy ST, et al. Ethnicity and attitudes toward life sustaining technology. Soc Sci Med. 1999;48(12):1779–89.
Barnato AE, Anthony DL, Skinner J, Gallagher PM, Fisher ES. Racial and ethnic difference in preferences for end-of-life treatment. J Gen Intern Med. 2009;24(6):695–701.
Cykert S, Joines JD, Kissling G, Hansen CL. Racial differences in patients’ perceptions of debilitated health states. J Gen Intern Med. 1999;14(4):217–22.
Appelbaum PS, Roth LH, Kidz C. The therapeutic misconception: informed consent in psychiatric research. Inter J Law Psych. 1982;5(3–4):319–29.
Weinfurt KP, Castel LD, Li Y, et al. The correlation between patient characteristics and expectations of benefit from Phase 1 clinical trials. Cancer. 2003;98(1):166–75.
Daugherty CK. Impact of therapeutic research on informed consent and the ethics of clinical trials: a medical oncology perspective. J Clin Oncol. 1999;17(5):1601–17.
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Perkins, H.S. (2016). Risks, Benefits, and Patients’ Treatment Decisions at the End of Life. In: A Guide to Psychosocial and Spiritual Care at the End of Life. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-6804-6_4
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DOI: https://doi.org/10.1007/978-1-4939-6804-6_4
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