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Participation of Chronically Ill Older Adults in Their Life-Prolonging Treatment Decisions: Rights and Opportunity*

Published online by Cambridge University Press:  29 November 2010

Sarah Shidler
Sarah Shidler
Affiliation:
Université du Québec en Abitibi-Témiscamingue
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Abstract

The right of the individual to participate in her life-prolonging treatment decisions, either as a decision maker or by having her treatment wishes used as a decision-making criterion, is the result of an evolution in legal guidelines over the last two decades. Although necessary, these legal guidelines are however not sufficient to assure the individual's opportunity to participate. For the chronically ill older adult residing in a health care institution, the opportunity to participate in decisions concerning life-prolonging treatments implicitly depends on the effective communication among three key actors (the individual, her physician, and her proxy). The necessity of this communication has important implications for clinical practice and future empirical research.

Résumé

Le droit de participer aux prises de décisions relatives aux traitements prolongeant sa propre vie constituent l'aboutissement d'une évolution dans les repères légaux des deux dernières décennies. L'individu participe à ces décisions, soit comme décideur, soit en ayant ses volontés utilisées comme critère de la prise de décision. Mais, quoique nécessaires, les repères légaux ne suffisent pas à assurer l'opportunité de participer à ces prises de décisions. Dans le cas de la personne âgée souffrant de maladie chronique et demeurant en institution, l'opportunité de participer aux prises de décisions repose implicitement sur une communication efficace entre elle-même, son médecin et son porte-parole potentiel. La nécessité de cette communication a des implications importantes, et pour la pratique clinique, et pour la recherche.

Keywords

Life-SupportDecision MakingUser ParticipationLegal RightsHealth Care.Traitement en fin de vieprise de décisionsparticipation des clientsdroits des usagersservices de santé.
Type
Articles
Information
Canadian Journal on Aging / La Revue canadienne du vieillissement , Volume 17 , Issue 1 , Printemps/Spring 1998 , pp. 1 - 23
Copyright
Copyright © Canadian Association on Gerontology 1998

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Footnotes

1

Université du Québec en Abitibi-Témiscamingue, 455 boul. de l'Université, Rouyn-Noranda, PQ J9X 5E4

*

Portions of a prior version of this article were presented at the symposium “Culture, values, and ethical principles in the care of the elderly: Clinical and policy perspectives” at the 20th Annual Scientific and Educational Meeting of the Canadian Association on Gerontology, Toronto, Ontario, October 24–27, 1991. The author acknowledges the generous assistance provided through a Doctoral Fellowship from the Social Sciences and Humanities Research Council of Canada and grants from the Foundation of UQAT. The author also acknowledges the helpful comments of Jacques Charest, Julie Feiner, Amy Harrison, Cindiana Jones and two anonymous reviewers on prior versions of this paper.

References

Act Respecting Health Services and Social Services, R.S.Q. 1991, c. S-4.2.Google Scholar
Angeli, M. (1984). Respecting the autonomy of competent patients. New England Journal of Medicine, 310, 1115–1116.CrossRefGoogle Scholar
Angeli, M. (1991). The case of Helga Wanglie. A new kind of “Right to Die” case. New England Journal of Medicine, 325, 511–512.CrossRefGoogle Scholar
Baudouin, J.-L., & Parizeau, M-H. (1987). Réflexions juridiques et éthiques sur le consentement au traitement médical. Médecine/Sciences, 3, 8–12.CrossRefGoogle Scholar
Beausoleil v. Sisters of Charity (1964), 63 D.L.R. (2d) 65.Google Scholar
Bedell, S.E., & Delbanco, T.L. (1984). Choices about cardiopulmonary resuscitation in the hospital: When do physicians talk with patients? New England Journal of Medicine, 310, 1089–1093.CrossRefGoogle ScholarPubMed
Bedell, S.E., Pelle, D., Maher, P.L., & Cleary, P.D. (1986). Do-not-resuscitate orders for critically ill patients in the hospital: How are they used and what is their impact? Journal of the American Medical Association, 256, 233–237.CrossRefGoogle ScholarPubMed
Bélanger, P.R. (1988). Santé et services sociaux au Québec: un système en otage ou en crise? Revue internationale d'action communautaire, 20/60, 145–156.Google Scholar
Berwick, D.M. (1995). The SUPPORT Project. Lessons for action. Hastings Center Report, 25(6), S21–S22.CrossRefGoogle ScholarPubMed
Black, H.C. (1983). Black's Law Dictionary (5th ed.). St. Paul, MN: West Publishing Co.Google Scholar
Blanchard, S. (1992). La famille du comateux Otto G. abandonne sa demande d'injonction. Le Devoir, 15 jan, A-3.Google Scholar
Brody, D.S. (1980). The patient's role in clinical decision making. Annals of Internal Medicine, 93, 718–722.CrossRefGoogle ScholarPubMed
Buchanan, A.E., & Brock, D.W. (1989). Deciding for others. The ethics of surrogate decision making. Cambridge: Cambridge University Press.Google Scholar
Bureau de la Statistique du Québec, (1985). Registre de la population, 1983. Fichier de décès. Québec: Les Publications du Québec.Google Scholar
Callahan, D. (1987). Setting limits: Medical goals in an aging society. New York: Simon & Schuster Inc.Google Scholar
Callahan, D. (1990). Rationing medical progress: The way to affordable health care. New England Journal of Medicine, 322, 1810–1813.CrossRefGoogle ScholarPubMed
Callahan, D. (1991). Medical futility, medical necessity: The-problem-without-a-name. Hastings Center Report, 21 (July-August), 30–35.CrossRefGoogle ScholarPubMed
Chouinard v. Landry, [1987] R.J.Q. 1954 (C.A.).Google Scholar
Civil Code of Quebec, 1991.Google Scholar
Cohen-Mansfield, J., Rabinovich, B.A., Lipson, S., Fein, A., Gerber, B., Weisman, S. & Pawlson, G. (1991). The decision to execute a durable power of attorney for health care and preferences regarding the utilization of life-sustaining treatments in nursing home residents. Archives of Internal Medicine, 151, 289–294.Google Scholar
Commission des Services juridiques, (1990). Mon mandat en cas d'inaptitude. Montréal, PQ: Service de l'Information, Commission des Services jurdiques.Google Scholar
Confédération québécoise des centres d'hébergement et de réadaptation, (1994). Système d'information et d'indicateurs de gestion des CHLSD, Vol. 2, Québec: Confédération québécoise des centres d'hébergement et de réadaptation.Google Scholar
Conseil des affaires sociales. (1985). Le virage santélogique: Scénario pour l'an 2000. Québec: Gouvernement du Québec.Google Scholar
Corbin, J.M., & Strauss, A.L. (1988). Illness trajectories. In Unending work and care (pp. 33–18). San Francisco: Jossey-Bass Publishers.Google Scholar
Cornellier, M. (1992). Santé: Les ministres cherchent les solutions les plus efficaces et au meilleur prix. Le Devoir, 19 juin, A-3.Google Scholar
Côté, P.-A. (1990). Interprétation des lois. 2e édition. Cowanville: Les Éditions Yvon Biais, Inc.Google Scholar
Cranford, R. (1991). Helga Wanglie's ventilator. Hastings Center Report, 21 (July-August), 23–24.CrossRefGoogle ScholarPubMed
Cranford, R., & Gostin, L. (1992). Futility: A concept in search of a definition. Law, Medicine & Health Care, 20, 307–309.Google Scholar
Criminal Code, R.S.C. 19 Eliz. 2, c. C-34.Google Scholar
Diamond, E.L., Jernigan, J.A., Moseley, R.A., Messina, V., & McKeown, R.A. (1989). Decision-making ability and advance directive preferences in nursing home patients and proxies. The Gerontologist, 29, 622–626.Google Scholar
Doucet, H. (1988). Mourir, approches bioéthiques. Paris/Ottawa: Desclée/Novalis.Google Scholar
Duchesne, L. (1996). La situation démographique au Québec (Édition 1996). Québec: Les publications du Québec.Google Scholar
Durand, G. (1989a). Droit et régulation alternative. In Parizeau, M.-H., (Ed.), Bioéthique. Méthodes et fondements (pp. 87–96). Québec: L'Association canadienne-française pour l'avancement des sciences.Google Scholar
Durand, G. (1989b). La bioéthique: nature, principes, enjeux. Paris/Montréal: Cerf(coll.Bref)/Fides.Google Scholar
Emanuel, L.L., Barry, M.J., Stoeckle, J.D., Ettelson, L.M., & Emanuel, E.J. (1991). Advance directives for medical care — A case for greater use. New England Journal of Medicine, 324(13), 889–894.Google Scholar
Emanuel, E.J., & Emanuel, L.L. (1994). The economics of dying. The illusion of cost savings at the end of life. The New England Journal of Medicine, 540–544.Google Scholar
Evans, D.A., et al. (1989). Prevalence of Alzheimer's disease in a community population of older persons. Higher than previously reported. Journal of the American Medical Association, 262, 2551–2556.CrossRefGoogle Scholar
Faden, R.F., & Beauchamp, T.L. (1986). A history and theory of informed consent. New York: Oxford University Press.Google Scholar
Faden, R.F., Becker, C, Lewis, C, Freeman, J., & Faden, A. (1981). Disclosure of information to patients in medical care. Medical Care, 19, 718–733.Google Scholar
Finucane, T.E. & Denman, S.J. (1989). Deciding about resuscitation in a nursing home: Theory and practice. Journal of the American Geriatrics Society, 37, 684–688.CrossRefGoogle Scholar
Finucane, T.E., Shumway, J.M., Powers, R.L., & D'Alessandri, R.M. (1988). Planning with elderly outpatients for contingencies of severe illness: A survey and clinical trial. Journal of General Internal Medicine, 3, 322–325.CrossRefGoogle ScholarPubMed
Gamble, E.R., McDonald, P.J., & Lichstein, P.R. (1991). Knowledge, attitudes, and behavior of elderly persons regarding living wills. Archives of Internal Medicine, 151, 277–280.Google Scholar
Gauthier, H., Duchesne, L., & Bureau de la Statistique du Québec, (1986). Les personnes âgées au Québec (pp. 206–209) Québec: Les Publications du Québec.Google Scholar
Glass, K.C. (1992). Elderly persons and decision-making in a medical context: Challenging Canadian Law. Unpublished doctoral dissertation, McGill University, Montreal.Google Scholar
Gleeson, K., & Wise, S. (1990). The Do-not-resuscitate Order: Still too little too late. Archives of Internal Medicine, 150, 1057–1060.Google Scholar
Goodwin, P.E., Smyer, M.A., & Lair, T.I. (1995). Decision making incapacity among nursing-home residents. Results from the 1987 NMES survey. Behavioral Sciences & the Law, 13, 405–414.CrossRefGoogle ScholarPubMed
Granger, D. (1984). Sondage sur le mourir. Montréal: Université de Montréal/Groupe de recherche en bioéthique.Google Scholar
Hamelin-Hankins v. Papillon, [1980] C.S. 879.Google Scholar
Harper, M.S., & Lebowitz, B.D. (1986). Mental Illness in Nursing Homes: Agenda for Research (pp. vi–B-1). Rockville: U.S. Department of Health and Human Services.Google Scholar
Helwig, D. (1990). Stop wasting health care dollars on dying seniors, physician says. Canadian Medical Association Journal, 143, 653–654.Google ScholarPubMed
High, D.M. (1988). All in the family: Extended autonomy and expectations in surrogate healthcare decision-making. The Gerontologist, 28(Suppl.), 46–51.CrossRefGoogle Scholar
High, D.M. (1993). Advance directives and the elderly: A study of intervention strategies to increase use. The Gerontologist, 33, 342–349.CrossRefGoogle ScholarPubMed
High, D.M. (1994). Families' roles in advance directives. Hastings Center Report, 24, S16–S18.CrossRefGoogle ScholarPubMed
Hopp v. Lepp, [1980] 2 S.C.R. 192.Google Scholar
Kart, C.S., Metress, E.K., & Metress, S.P. (1992). Human aging and chronic disease. Boston: Jones and Bartlett Publishers.Google Scholar
Katz, J. (1984). The silent world of doctor and patient. New York: The Free Press.Google Scholar
Keyserlingk, E.W. (1979). Sanctity of life or quality of life in the context of ethics, medicine and law. Ottawa: Law Reform Commission of Canada.Google Scholar
Kolata, G. (1995). Withholding care from patients: Boston case asks who decides. New York Times, April 3, 1.Google Scholar
Kouri, R.P. (1984). L'influence de la Cour suprême sur l'obligation de renseigner en droit médical québécois. Revue du Barreau, 44, 851–868.Google Scholar
Kouri, R.P. (1987). Le consentement aux soins médicaux à la lumière du project de loi 20. Revue de Droit Université de Sherbrooke, 18, 27–43.Google Scholar
La Puma, J., Orentlicher, D., & Moss, R.J. (1991). Advance directives on admission. Clinical implications and analysis of the patient self-determination act of 1990. Journal of the American Medical Association, 266, 402–405.Google Scholar
Law Reform Commission of Canada, (1983). Euthanasia, aiding suicide and cessation of treatment. Report 20. Ottawa: Law Reform Commission of Canada.Google Scholar
Lesage-Jarjoura, P. (1990). La cessation de traitement. Au carrefour du droit et de la médecine. Cowansville, PQ: Les Éditions Yvon Biais, Inc..Google Scholar
Lesage-Jarjoura, P., Philips-Nootens, S., & Lessard, J. (1995). Éléments de responsabilité civile médicale. Le droit dans le quotidien de la médecine. Cowansville, PQ: Les Éditions Yvon Biais, Inc.Google Scholar
Lo, B., MacLeod, G., & Saika, G. (1986). Patient attitudes to discussing life-sustaining treatment. Archives of Internal Medicine, 146, 1613–1615.Google Scholar
Longstreth, W.T., Cob, L.A., Fahrenbruck, C.E., & Copass, M.K. (1990). Does age affect outcomes of out-of-hospital cardiopulmonaryresuscitation? Journal of the American Medical Association, 264, 2109–2110.CrossRefGoogle Scholar
Luddington, A.V. (1993). The “death control” dilemma. Who is to make end-of-life decisions-you and your patient, or “the system”? Geriatrics, 48, 72–77.Google ScholarPubMed
Lurie, N., Pheley, A.M., Miles, S.H., & Bannick-Mohrland, S. (1992). Attitudes toward discussing life-sustaining treatments in extended care faculty patients. Journal of the American Geriatrics Society, 40, 1205–1208.Google Scholar
Manoir de la Pointe Bleue (1978), inc. v. Corbeil, [1992] R.J.Q. 712–728.Google Scholar
Mathews, G. (1988). Le vieillissement démographique et son impact sur la situation des personnes Âgées et les services qui leurs sont offerts. Québec: Conseil québécois de la recherche sociale.Google Scholar
Medical Law, R.S.Q. 1994, c. M-9.Google Scholar
Memeteau, G. (1988). Volonté du malade opposée à l'intérêt du malade. Provocation à une réflexion hérétique. Revue de Droit Université de Sherbrooke, 18, 265–303.Google Scholar
Ménard, J.-P. (1991). Loi 120: Quels sont les droits des usagers? Le Réadaptologue, sept, 30.Google Scholar
Miles, S.H. (1991). Informed demand for “non-beneficial” medical treatment. New England Journal of Medicine, 325, 512–515.Google Scholar
Miles, S.H. (1992). Medical Futility. Law, Medicine & Health Care, 20, 310–315.Google Scholar
Miles, S.H., & Gomez, C. (1989). Protocols for elective use of life-sustaining treatments. New York: Springer Publishing Co., Inc.Google Scholar
Ministère de la Justice. (1993). Commentaires du ministre de la Justice. Le Code civil du Québec. Tome 1. Québec: Les Publications du Québec.Google Scholar
Ministère de la Santé et des Services sociaux. (1990). Une réforme axée sur le citoyen. Québec: Ministère de la Santé et des Services sociaux.Google Scholar
Molinari, P.A. (1991). Le droit aux services de santé: de la rhéthorique à la mise en oeuvre judiciaire. In Développements récents en droit de la santé. Cowans ville: Les Éditions Yvon Biais, Inc.Google Scholar
Morrow v. Royal Victoria Hospital, [1990] R.R.A. 41.Google Scholar
Murphy, D.J., & Matchar, D.B. (1990). Life-sustaining therapy. A model for appropriate use. Journal of the American Medical Association, 264, 2103–2108.Google Scholar
Nancy B. v. Hôtel-Dieu de Québec et al, [1992] R.J.Q. 361.Google Scholar
O'Connor, B.P. & Vallerand, R.J. (1994). The relative effects of actual and experienced autonomy on motivation in nursing home residents. Canadian Journal on Aging, 73, 528–538.Google Scholar
Orentlicher, D. (1992). The illusion of patient choice in end-of-life decisions. Journal of the American Medical Association, 267, 2101–2104.Google Scholar
Ouslander, J.G., Tymchuk, A.J., & Rahbar, B. (1989). Health care decisions among elderly long-term care residents and their potential proxies. Archives of Internal Medicine, 149, 1367–1372.CrossRefGoogle ScholarPubMed
Patient Self-Determination Act, contained in the Omnibus Budget Reconciliation Act of 1990, Public Law 101–508, §§ 4207, 4751.Google Scholar
Patrick, D.L., Danis, M., Southerland, L.I., & Hong, G. (1988). Quality of life following intensive care. Journal of General Internal Medicine, 3, 218–223.CrossRefGoogle ScholarPubMed
Pearlman, R.A., & Jonsen, A. (1985). The use of quality of life considerations in medical decision-making. Journal of the American Geriatrics Society, 33, 344–352.Google Scholar
Pearlman, R.A. & Uhlmann, R.F. (1988). Quality of life in chronic diseases: Perceptions of elderly patients. Journal of Gerontology: Medical Sciences, 43, M25–30.CrossRefGoogle ScholarPubMed
Pellegrino, E.D. (1994). Allocation of resources at the bedside: The intersection of economics, law, and ethics. Kennedy Institute of Ethics Journal, 4, 309–317.CrossRefGoogle ScholarPubMed
Pelletier, G. (1996). La population du Québec par territoire de CLSC, de DSC et de RSS, pour la période 1981 à 2016. Collection des données statistiques et indicateurs. Québec: Bibliothèque nationale du Québec.Google Scholar
Perlmuter, L.C., Monty, R.A., & Chan, F. (1986). Choice, control and cognitive functioning. In Baltes, M.M. & Baltes, P.B. (Eds.), The psychology of control and aging (pp. 91–118). Hillsdale, NJ: Lawrence Erlbaum Associates.Google Scholar
Potvin, L. (1984). L'obligation de renseignement du médecin. Étude comparée du droit québécois, français et du common law canadien. Cowansville: Les Éditions Yvon Biais.Google Scholar
President's Commission, (1982). Making health care decisions. Vol. 1. Washington, DC: Government Printing Office.Google Scholar
Public Health Protection Act, R.S.Q. 1995, c. P-35.Google Scholar
Quebec Charter of Human Rights and Freedoms, R.S.Q., c. C-12.Google Scholar
Quebec Code of Ethics for Physicians, R.R.Q. 1981, c. M-9, r. 4.Google Scholar
Quill, T.E. (1989). Utilization of nasogastric feeding tubes in a group of chronically ill, elderly patients in a community hospital. Archives of Internal Medicine, 149, 1937–1941.Google Scholar
Radecki, S.E., Kane, R.L., Solomon, D.H., Mendenhall, R.C., & Beck, J.C. (1988). Are physicians sensitive to the special problems of older patients? Journal of the American Geriatrics Society, 36, 719–725.Google Scholar
Raffin, T.A. (1994). Physicians' refusal to provide inappropriate treatment. The New England Journal of Medicine, 144–145.Google ScholarPubMed
Reibl v., Hughes, [1980] 2 S.C.R. 880.Google Scholar
Roth, L.H., Meisel, A., & Lidz, C.W. (1977). Tests of competency to consent to treatment. American Journal of Psychiatry, 134(3), 279–284.Google Scholar
Roy, J. (1986). Bilan du maintien à domicile dans les CLSC. 1. Problématique des services. Québec: Fédération des CLSC du Québec.Google Scholar
Rozovsky, L.E., & Rozovsky, F.A. (1990). The Canadian law of consent to treatment. Markham, ON: Butterworths.Google Scholar
Ruark, J.E., Raffin, T.A., & The Stanford University Medical Center Committee on Ethics, (1988). Initiating and withdrawing life support: Principles and practice in adult medicine. New England Journal of Medicine, 318, 25–30.CrossRefGoogle Scholar
Schuman, J. (1982). The dying elderly person: A physician's perspective. Health Law in Canada, 3, 78.Google Scholar
Scitovsky, A.A. (1988). Medical care in the last twelve months of life: The relation between age, functional status, and medical care expenditures. Milbank Quarterly, 66, 640–660.Google Scholar
Seckler, A.B., Meier, D.E., Mulvihill, M., & Cammer Paris, B.E. (1991). Substituted judgment: How accurate are proxy predictions? Annals of Internal Medicine, 115, 92–98.Google Scholar
Shmerling, R.H., Bedell, S.E., Lilienfeld, A., & Delbanco, T.L. (1988). Discussing cardiopulmonary resuscitation: A study of elderly outpatients. Journal of General Internal Medicine, 3, 317–321.Google Scholar
Starr, P. (1982). The social transformation of American medicine. New York: Basic Books, Inc..Google Scholar
Steiber, S.R. (1987). Right to die: Public balks at deciding for others. Hospitals, 61(5), 72.Google ScholarPubMed
Strauss, A.L., Corbin, J.M., Fagerhaugh, S., Glaser, B.G., Maines, D., Suczek, B., & Weiner, C.L. (1984). Chronic illness and the quality of life. (2nd ed.) St. Louis: The C.V. Mosby Company.Google Scholar
Suhl, J., Simons, P., Reedy, T., & Garrick, T. (1994). Myth of substituted judgment. Surrogate decision making regarding life support is unreliable. Archives of Internal Medicine, 154, 90–96.CrossRefGoogle ScholarPubMed
The SUPPORT Principal Investigators for the SUPPORT Project. (1995). 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). Journal of the American Medical Association, 274, 1591–1598.Google Scholar
Temkin-Greener, H., Meiners, M.R., Petty, E.A., & Szydlowski, J.S. (1992). The use and costs of health services prior to death: a comparison of the Medicare-only and the Medicare-Medicaid elderly populations. Milbank Quarterly, 70, 679–701.Google Scholar
Teno, J., Lynn, J., Phillips, R.S., et al. (1994). Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? Journal of Clinical Ethics, 5, 23–30.Google Scholar
Thomlinson, T. (1986). The physician's influence on patients' choices. Theoretical Medicine, 7, 105–122.Google Scholar
Truog, R.D., Brett, A.S., & Frader, J. (1992). The problem with futility. New England Journal of Medicine, 326, 1560–1564.Google Scholar
Tuteur, P.G., & Tuteur, S.D. (1990). Life-sustaining therapies in elderly persons. Journal of the American Medical Association, 264, 2118.Google Scholar
Uhlmann, R.F., Pearlman, R.A., & Cain, K.C. (1988). Physicians' and spouses' predictions of elderly patients' resuscitation preferences. Journal of Gerontology, 43, M115–M121.Google Scholar
Gisèle Vallée, ès qualité de curatrice aux biens et à la personne de M. David Vallée v. Foyer du Bonheur Inc. et Centre hospitalier de soins de longue durée d'Aylmer, [1993] R.J.Q. 494.Google Scholar
Wetle, T., Levkoff, S., Cwikel, J., & Rosen, A. (1988). Nursing home resident participation in medical decisions: Perceptions and preferences. The Gerontologist, 28(Suppl.), 32–38.Google Scholar
Youngner, S.J. (1988). Who defines futility? Journal of the American Medical Association, 260, 2094–2095.Google Scholar
Zweibel, N.R., & Cassel, C. (1989). Treatment choices at the end of life: A comparison of decisions by older patients and their physician-selected proxies. The Gerontologist, 29, 615–621.Google Scholar