OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals.
DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective.
SETTING: A senior center and a multilevel retirement community in Los Angeles.
PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making.
MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a “full life.” Decisionmaking authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient’s interests), and shifted from physician to family as the patient’s prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions.
CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients’ end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients’ and families’ goals for care.
advance care planning aged decision making life-sustaining treatment physician-patient relations proxy terminal care
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Rudberg MA, Teno JM, Lynn J. Developing and implementing measures of quality of care at the end of life: a call for action. J Am Geriatr Soc. 1997;45:528–30.PubMedGoogle Scholar
Childress JF, Beauchamp TL. Principles of Biomedical Ethics. 4th ed. New York, NY: Oxford University Press; 1994.Google Scholar
Cruzan v Director, Missouri Department of Health, 110 S Ct 2841 (1990).Google Scholar
Omnibus Budget Reconciliation Act (US Public Law 101-508), 1990.Google Scholar
President’s Commission for the Study of Ethical Problems in Medicine and Medical and Behavioral Research. Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues in treatment Decisions. Washington, DC: US Government Printing Office; 1983.Google Scholar
Schonwetter RS, Walker RM, Kramer DR, Robinson BE. Resuscitation decision making in the elderly: the value of outcome data. J Gen Intern Med. 1993;8:295–300.PubMedCrossRefGoogle Scholar
Murphy DJ, Burrows D, Santilli S, et al. The influence of the probability of survival on patients’ preferences regarding cardiopulmonary resuscitation. N Engl J Med. 1994;330:545–9.PubMedCrossRefGoogle Scholar
Miller DL, Jahnigen DW, Gorbien MJ, Simbartl L. Cardiopulmonary resuscitation: how useful? Attitudes and knowledge of an elderly population. Arch Intern Med. 1992;152:578–82.PubMedCrossRefGoogle Scholar
Teno JM, Licks S, Lynn J, et al. Do advance directives provide instructions that direct care? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. J Am Geriatr Soc. 1997;45:508–12.PubMedGoogle Scholar
Uhlmann R, Pearlman R, Cain KC. Physicians’ and spouses’ predictions of elderly patients’ resuscitation preferences. J Gerontology. 1988;43:M115–21.Google Scholar
Hare J, Pratt C, Nelson C. Agreement between patients and their self-selected surrogates on difficult medical decisions. Arch Intern Med. 1992;152:1049–54.PubMedCrossRefGoogle Scholar
Layde PM, Beam CA, Broste SK, et al. Surrogates’ predictions of seriously ill patients’ resuscitation preferences. Arch Fam Med. 1995;4:518–23.PubMedCrossRefGoogle Scholar
A controlled trial to improve care for seriously ill hospitalized patients: the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT). The SUPPORT Principal Investigators. JAMA. 1995;274:1591–8.CrossRefGoogle Scholar
Morse JM, ed. Qualitative Health Research. Newbury Park, Calif: Sage; 1992.Google Scholar
Inui TS. The virtue of qualitative and quantitative research. Ann Intern Med. 1996;125:770–1.PubMedGoogle Scholar
Patton M. Qualitative Evaluation and Research Methods. Newbury Park, Calif: Sage; 1990.Google Scholar
Emanuel L. The health care directive: learning how to draft advance care documents. J Am Geriatr Soc. 1991;39:1221–8.PubMedGoogle Scholar
Ditto PH, Druley JA, Moore KA, Danks JH, Smucker WD. Fates worse than death: the role of valued life activities in health-state evaluations. Health Psychol. 1996;15:332–43.PubMedCrossRefGoogle Scholar
Patrick DL, Pearlman RA, Starks HE, Cain KC, Cole WG, Uhlmann RF. Validation of preferences for life-sustaining treatment: implications for advance care planning. Ann Intern Med. 1997;127:509–17.PubMedGoogle Scholar
Berger R, Kelley M. Survival after in-hospital cardiopulmonary arrest of non-critically ill patients: a prospective study. Chest. 1994;106:872–9.PubMedGoogle Scholar
Tresch D, Heudebert G, Kutty K, Ohlert J, VanBeek K, Masi A. Cardiopulmonary resuscitation in elderly patients hospitalized in the 1990s: a favorable outcome. J Am Geriatr Soc. 1994;42:137–42.PubMedGoogle Scholar
Cooper S, Cade J. Predicting survival, in-hospital cardiac arrests: resuscitation survival variables and training effectiveness. Resuscitation. 1997;35:17–22.PubMedCrossRefGoogle Scholar
Leroy O, Santre C, Beuscart C, et al. A five-year study of severe community-acquired pneumonia with emphasis on prognosis in patients admitted to an intensive care unit. Intensive Care Med. 1995;2:24–31.CrossRefGoogle Scholar
Markowitz JS, Pashko S, Gutterman EM, Linde-Zwirble WT, Newbold R. Death rates among patients hospitalized with community-acquired pneumonia: a reexamination with data from three states. Am J Public Health. 1996;86(pt 1):1152–4.PubMedCrossRefGoogle Scholar
Dardaine V, Constans T, Lasfargues G, Perrotin D, Ginies G. Outcome of elderly patients requiring ventilatory support in intensive care. Aging. 1995;7:221–7.PubMedGoogle Scholar
Olsson M, Granstrom L, Lindblom D, Rosenqvist M, Ryden L. Aortic valve replacement in octogenarians with aortic stenosis: a case-control study. J Am Coll Card. 1992;20:1512–6.CrossRefGoogle Scholar
Cascinu S, Del Ferro E, Catalano G. Toxicity and therapeutic response to chemotherapy in patients aged 70 years or older with advanced cancer. Am J Clin Oncol. 1996;19:371–4.PubMedCrossRefGoogle Scholar
Silliman RA, Guadagnoli E, Weitberg AB, Mor V. Age as a predictor of diagnostic and initial treatment intensity in newly diagnosed breast cancer patients. J Gerontology. 1989; 44:M46–50.Google Scholar
Greenfield S, Blanco DM, Elashoff RM, Ganz PA. Patterns of care related to age of breast cancer patients. JAMA. 1987; 257:2766–70.PubMedCrossRefGoogle Scholar
Malone ML, Sial SH, Battiola RJ, Nachodsky JP, Solomon DJ, Goodwin JS. Age-related differences in the utilization of therapies post acute myocardial infarction. J Am Geriatr Soc. 1995; 43:627–33.PubMedGoogle Scholar
Boyd K, Teres D, Rapoport J, Lemeshow S. The relationship between age and the use of DNR orders in critical care patients. Evidence for age discrimination. Arch Intern Med. 1996;156:1821–6.PubMedCrossRefGoogle Scholar
Phillips RS, Wenger NS, Teno J, et al. Choices of seriously ill patients about cardiopulmonary resuscitation: correlates and outcomes. Am J Med. 1996;100:128–37.PubMedCrossRefGoogle Scholar
Lynn J. Why I don’t have a living will. Law Med Hlth Care. 1991;19:101–4.Google Scholar
High DM, Turner HB. Surrogate decision-making: the elderly’s familial expectations. Theoret Med. 1987;8:303–20.CrossRefGoogle Scholar
High DM. All in the family: extended autonomy and expectations in surrogate health care decision-making. Gerontologist. 1988;28(suppl):46–51.PubMedGoogle Scholar
Sehgal A, Galbraith A, Chesney M, Schoenfeld P, Charles G, Lo B. How strictly do dialysis patients want their advance directives followed? JAMA. 1992; 267:59–63.PubMedCrossRefGoogle Scholar
Degner LF, Sloan JA. Decision making during serious illness: what role do patients really want to play? J Clin Epidemiol. 1992;45:941–50.PubMedCrossRefGoogle Scholar
Davison BJ, Degner LF, Morgan TR. Information and decision-making preferences of men with prostate cancer. Oncol Nurs Forum. 1995;22:1401–8.PubMedGoogle Scholar
Degner LF, Kristjanson LJ, Bowman D, et al. Information needs and decisional preferences in women with breast cancer. JAMA. 1997;277:1485–92.PubMedCrossRefGoogle Scholar
Zweibel NR, Cassel CK. Treatment choices at the end of life: a comparison of decisions by older patients and their physician-selected proxies. Gerontologist. 1989;29:615–21.PubMedGoogle Scholar