As we try to develop appropriate models for end-of-life care, it is important to review theoretical applications as they relate to current models of care. It is also vital to listen carefully to what patients and their family caregivers tell us about their needs at the end of life. This article explores the issue of control: its application to wellness at the end of life, and patient and family caregiver perceptions about end-of-life control. Interventions and implications for professional caregivers are proposed.
Get full access to this article
View all access options for this article.
References
1.
Byock I: Dying Well: The Prospect for growth at the end of life. New York: Riverhead Books, 1997.
2.
SUPPORT Principal Investigators: A controlled trial to improve care for seriously ill hospitalized patients. JAMA. 1995; 274(20): 1591-1598.
3.
Prigerson HG: Socialization to dying: Social determinants of death acknowledgment and treatment among terminally ill geriatric patients. Journal of Health and Social Behavior. 1992; 33: 378-395.
4.
Taylor SL: Quandary at the crossroads: Paternalism versus advocacy surrounding end of life treatment decisions. American Journal of Hospice and Palliative Care. 1995; 12(4): 43-47.
5.
Thompson LM: The future of death: Death in the hands of science. Nursing Outlook. 1994; 42(4): 175-180.
6.
Aries P: The hour of our death. New York: Alfred A.Knopf, 1995.
7.
Walter T: Natural death and the noble savage. Omega. 1995; 30(4): 237-248.
8.
Rinaldi A, Kearl MC: The hospice farewell: Ideological perspectives of its professional practitioners. Omega. 1990; 21(4): 283-300.
9.
Mirowsky J, Ross CE: Social patterns of distress. Annual Review of Sociology. 1986; 12:23-45.
10.
Antonovsky A: Unraveling the mystery of health. San Francisco, CA: Jossey-Bass, 1987.
11.
Weitz R: Uncertainty and the lives of people with AIDS. In Cockerman WC, Glasser M, Heuser LS (eds.): Readings in medical sociology. Upper Saddle River, NJ: Prentice-Hall, 1998.
12.
Thoist PA: Stress, coping, and social support processes: Where are we? What next? In Cockerman WC, Glasser M, Heuser LS (eds): Readings in medical sociology. Upper Saddle River, NJ: Prentice-Hall, 1998.
13.
Schultz R, Hanusa BH: Experimental social gerontology: A social psychological perspective. Journal of Social Issues. 1980; 36(2): 30-46.
14.
Mirowsky J, Ross CE: Control or defense? Depression and the sense of control over good and bad outcomes. Journal of Health and Social Behavior. 1990; 31: 71-86.
15.
Glass DC, Singer JE: Behavioral aftereffects of unpredictable and uncontrollable aversive events. American Scientist. 1972; 60(4): 457-465.
16.
Kleinman A: The illness narratives: Suffering, healing, and the human condition. New York: Basic Books,1988.
17.
Schulz R, Schlarb J: Two decades of research on dying: What do we know about the patient?Omega. 1987; 18(4): 299-317.
18.
Paton L: The sacred circle: A conceptual framework for spiritual care in hospice. The American Journal of Hospice and Palliative Care. 1996; 13: 52-56.
19.
Kraus N, Stryker S: Stress and well-being: The buffering role of locus of control beliefs. Social Science and Medicine. 1984; 18(9): 783-790.
20.
Cousins N: Anatomy of an illness. Boston, MA: Hall, 1979.
21.
Peterson C, Seligman J: Causal explanations as a risk factor for depression: Theory and evidence. Psychological Review. 1984; 91: 347-374.
22.
Seeman M, Seeman TE: Health behavior and personal autonomy: A longitudinal study of the sense of control in illness. Journal of Health and Social Behavior. 1983; 24: 144-160.
23.
Post-White J: The role of sense of coherence in mediating the effects of mental imagery on immune function, cancer outcomes, and quality of life. In McCubbin HI, Thompson EA, Thompson AI, Fromes JE (eds.): Sense of coherence and resiliency: Stress, coping, and health. Madison, WI: University of Wisconsin System, 1994.
24.
Caruso-Herman D: Concerns for the dying patient and family. Seminars in Oncology Nursing. 1989; 5(2): 120-123.
25.
Burgess D: Denial and terminal illness. The American Journal of Hospice and Palliative Care. 1994; 11(2): 46-48.
26.
Singer PA, Martin DK, Kelner M: Quality end of life care: Patients’ perspectives. JAMA. 1999; 281(2): 163-168.
27.
Kelner M: Activists and delegators: Elderly patients’ preferences about control at the end of life. Social Science and Medicine. 1995; 41(4): 537-545.
28.
Singer PA, Martin DK, Lavery JV, Theil EC, Kelner M, Mendelssohn DC: Reconceptualizing advanced care planning from the patient’s perspective. Archives of Internal Medicine. 1994; 158: 879-884.
29.
Matuk L: Choices. Canadian Nurse. 1991; 87(6): 30-31.
30.
Arnell Y: An ounce of control. Nursing92. 1992; 22(4): 83.
31.
Wiseman A: Appropriate death and the hospice program. The Hospice Journal. 1988; 4(1): 66-70.
32.
Olsen M: Healing the dying. Albany, NY: Delmar Pub. 1997.
33.
Kovach C: In your practice, what experiences of patients and family members could be classified as “a good death” or a positive process of dying?Journal of Gerontological Nursing. 1998; 24(7): 47-52.
34.
ASCO, Task Force on Cancer Care at the End of Life: Cancer care during the last phase of life. Journal of Clinical Oncology. 1998; 16(5): 1986-1996.
35.
Mesler MA: The philosophy and practice of patient control in hospice: The dynamics of autonomy versus paternalism. Omega. 1995; 30(3): 173-189.
36.
Koop PM, Strang V: Predictors of bereavement outcomes in families of patients with cancer: A literature review. Canadian Journal of Nursing Research. 1997; 29(4): 33-50.
37.
Brant JM: The art of palliative care: Living with hope, dying with dignity. Oncology Nursing Forum. 1998; 25(6): 995-1004.
38.
Seale O, Addington-Hall J, McCarthy M: Awareness of dying: Prevalence, causes, and consequences. Social Science and Medicine. 1997; 45(3): 477-484.
39.
Campbell C: Suffering, compassion, and dignity in dying. Duquesne Law Review. 1996; 35(109): 33-50.
40.
Moyer B: Healing and the mind. New York: Doubleday, 1993.
