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Principles and Purpose: The Patient Surrogate's Perspective and Role
Published online by Cambridge University Press: 29 July 2009
Extract
The critical role of surrogates—commonly if erroneously called “Informal caregivers”—has been generally ignored by clinical and bioethical literatures. While assumed to provide no more than ancillary support, these patient representatives directly or indirectly affect patient care to the extent they inhibit or facilitate both home-based care and patient decisions regarding treatment alternatives. Members of this group include relatives and neighbors who may or may not act in consort as advisors, assistants, care providers, and surrogate decisionmakers acting on the patient's behalf with members of the medical community. Not only do they often possess a critical voice strongly influencing both patient care decisions and, after discharge, home care and rehabilitation, this paper argues they do so from a perspective that is often radically different from one endorsed by medical professionals.
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References
1. See, for example, Ignatieff, M. Scar Tissue. London: Chatto & Windus, 1993;Google ScholarKoch, T. A Place in Time: Caregivers for Their Elderly. New York: Praeger Books, 1993;Google ScholarRoth, P. Patrimony. New York: Simon and Schuster, 1991;Google ScholarKoch, T. Mirrored Lives: Aging Children and Aging Parents. New York: Praeger Books, 1990.Google Scholar
2. Catalfo, P. Welcome to America, online. New Age Journal 1991, 01:39–47.Google Scholar
3. Two physicians have surveyed independently the broad medium of on-line health-related resources. See: Ferguson, T. Health Online: How to Go Online to Find Health Information, Support Forums, and Self-Help Communities in Cyberspace. Reading (MA): Addison-Wesley, 1996;Google ScholarDrLinden, T. Tom Linden's Guide to Online Medicine. New York: McGraw-Hill, 1995.Google Scholar
4. Till, JE. Cancer-related Internet discussion groups. Humane Medicine 1995;11(4):142–3;Google ScholarWeinberg, N, Schmale, JD, Uken, J, Wessel, K. Computer-mediated support groups. Social Work with Groups 1995;17(4):43–54.CrossRefGoogle Scholar
5. Lavoie, JP. Support groups for informal caregivers don't work! refocus the groups or the evaluations? Canadian Journal on Aging 1994;14(3)580–603.CrossRefGoogle Scholar
6. Koch, T. The gulf between: surrogate choices, physician instructions, and informal network responses. Cambridge Quarterly of Healthcare Ethics 1995;4(2):185–92.CrossRefGoogle ScholarPubMed
7. See note 1, Koch, 1990.Google Scholar
8. See note 3, Ferguson, 1996.Google Scholar
9. See note 4, Till, 1995:142.Google Scholar
10. Koch, T. Online outreach and crisis support for care givers. Paper presented at the Ninth International Congress on Alzheimer's Disease and Related Disorders. Toronto, Canada, sep. 20–22, 1993.Google Scholar
11. Koch, T. The Message is the Medium: Online, All the Time, and for Everyone. Westport (CT): Praeger Books, 1996: Ch. 4.Google Scholar
12. See, for example, Kirkey, S. The ‘doctor’ is online. Vancouver Sun 1996; 13 May; B8.Google Scholar
13. Thomasma, DC. Decision making and decision analysis: beneficence in medicine. Journal of Critical Care 1988;3(2):122–32.CrossRefGoogle Scholar
14. Hill, PT. The patient-physician relationship in clinical trials: an ethical dilemma? Making the Rounds in Health, Faith, and Ethics. 1996;1(19):5–7.Google Scholar
15. Gaylin, W. Who killed Libby Lion? The Nation 1995; 9 Oct: 397.Google ScholarCited in Making the Rounds 1995;1(5):2.Google Scholar
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