Abstract
The purpose of this paper is to promote the development of a social contract between patient and clinician that permits patients to state how they want to live as they survive rather than what they are willing to lose to extend their survival. To do this, patients must have sufficient leverage to affect the nature of the care they receive. This leverage, it is proposed, can be achieved by first making a ‘Declaration of Patients’ Rights Relative to Their Quality of Life' and then evaluating the extent to which the patient's providers comply with this rights statement. The paper also reviews The World Health Report 2000 [Health Systems: Improving Performance Geneva: WHO, 2000] as an example of an alternative approach to defining a health care social contract and evaluating a health system's performance. Also discussed, were steps that could be taken to facilitate the integration of the patients' rights statement into medical practice and health care systems performance.
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References
The World Health Report 2000. Health Systems: Improving Performance. Geneva: WHO, 2000.
Feldman MA. Health care policy evaluation: A conceptual model using medical ethics. J Health Hum Ser Adm 1998; 21: 181–198.
Hiller MD. Medical ethics and public policy. In: Hiller MD (ed.), Medical Ethics and the Law, Cambridge: Ballinger, 1981.
Universal Declaration of Human Rights. Reprinted in: La France AB. Bioethics: Health Care, Human Rights and the Law. New York: Matthew Bender, 1999
Howard RE. Dignity, community and human rights. In: Ahmed An-Na'im A (ed.), Human Rights in Cross-Cultural Perspectives: A Quest for Consensus, Philadelphia: Pennsylvania, 1999.
Donnelly J. Universal Human Rights in Theory and Practice. Ithaca: Cornell, 1989.
Veatch RM. A Theory of Medical Ethics. New York: Basic Books, 1981.
Annas GJ. A national bill of patients' rights. N Eng J Med 1998; 338: 695–699.
Annas GJ. The Rights of Hospital Patients. New York: Avon, 1975.
Cantor NL. Quality of life in legal perspective. In: Reich WT (ed), Encyclopedia of Bioethics, New York: McMillian, 1995; 3: 1361–1365.
Faden R, Leplége A. Assessing quality of life: Moral implications for clinical practice. Med Care 1992; 30 (suppl. 5): MS166–MS175.
Burke L. US regulation of pharmaceutical outcomes research. Values Health 2001; 4: 5–7.
Osterfeld E. Aristotle on the good life and quality of life. In: Nordenfelt L (ed.), Concepts and Measurement of Quality of Life in Health Care, Amsterdam: Kluwer, 1994; 19–34.
Brock D. Quality of life measures in health care and medical ethics. In: Spilker B (ed.), Quality of Life and Pharmacoeconomics in Clinical Trials. 2nd edn. Philadelphia: Lippincott-Raven, 1996; 497–510.
Goodin R. Laundering preferences. In: Elster J, Hylland A (eds), Foundations of Social Choice Theory, Cambridge: Cambridge University Press, 1986.
Sen A. Well-being, agency and freedom: The Dewey lectures. J Philos 1985; 82: 169–221.
Sen A. The Standard of Living. Cambridge: Cambridge University Press, 1987.
Calman KC. Quality of life in cancer patients: An hypothesis. J Med Ethics 1984; 10: 124–127.
Welham J, Haire M, Mercer D, Stedman T. A gap approach to exploring quality of life in mental health. Quality Life Res 2001; 10: 421–429.
Hunt SM, McKenna SP. The QLDS: A scale for the measurement of quality of life in depression. Health Policy 1992; 11: 307–319.
21. 'World Health Organization Constitution.' in Basic Documents. Geneva: World Health Organization, 1948.
Ware JE. Standards for validating health measures: Definition and content. J Chronic Disarmament 1987; 40: 473–480.
Codman EA. A Study of Hospital Efficiency: The First Five Years. Boston: Thomas Todd, 1916.
Diener E. Subjective well-being. Psychol Bull 1984; 235: 542–575.
Spiegel D, Bloom JR, Kraemer HC, Gottheil E. Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 1989; 2: 888–891.
Goodwin PJ, Leszcz M, Ennis M, et al. The effect of group psychosocial support on survival in metastatic breast cancer. N Eng J Med 2001
Spiegel D. Mind matters-group therapy and survival in beast cancer. N Eng J Med 2001; 345: 1767–1768.
American Hospital Association's Statement on a 'Patient's Bill of Rights'. In: Strauss PJ (ed.), The Elder Law Handbook, A Legal and Financial Survival Guide for Caregivers and Seniors, New York: Facts on File, 1996; 10–11.
Bookbinder M, Coyle N, Thaler H. Implementing national standards for pain management: Program model and evaluation. J Pain Symptom Manag 1996; 12: 334–347.
Pain Assessment and Management: An Organizational Approach. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations, 2002.
Barofsky I, Sugerbaker PH. Quality of life assessment of the cancer patient. In: Spilker B (ed.), Quality of Life Assessment in Clinical Studies, New York: Raven, 1990; 419–439.
Gostin LO. Public Health Law: Power-Duty-Restraint. Berkeley: University of California, 2000; 125.
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Barofsky, I. Patients' rights, quality of life, and health care system performance. Qual Life Res 12, 473–484 (2003). https://doi.org/10.1023/A:1025095311107
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DOI: https://doi.org/10.1023/A:1025095311107