Advance Care Planning and the ALS Patients:
A Cross-Cultural Perspective on Advance Directives
___1 Satz v. Perlmutter , 362 So. 2d 160 (Fla. Dist. Ct. App. 1978), aff'd , 379 So. 2d 359 (Fla. 1979); In re Farrell , 529 A.2d 404 (N.J. 1987); In re Culham , No. 87-340537-AZ, slip op. (Cir. Ct. Mich., Dec. 15, 1987).
___2 Estate of Leach v. Shapiro, 469 N.E.2d 1047 (Ohio 1984).
___3 As commonly understood and as used in this paper an "advance directive" is a written document that gives direction and guidance for health care decisions at a time of future incompetence (decisional incapacity). An advance directive may designate another person to make health care decisions on his or her behalf (a "proxy directive" or "durable power of attorney for health care"); may state the individual's wishes and instructions for health care (a "living will" or "instruction directive"); or both (a "combined advance directive"). The term is sometimes used to refer to oral statements as well. Advance directives are ordinarily used to refuse life-sustaining treatment near the end of life, but can also be used to make affirmative requests for treatment.
___4 Estate of Marc D. Silverstein / Carol B. Stocking / Jack P. Antel, et al., "Amyotrophic Lateral Sclerosis and Life-Sustaining Therapy: Patients' Desires for Information, Participation in Decision Making, and Life-Sustaining Therapy", Mayo Clinic Proceedings 66 (9) (Sept. 1991): 906-13; Rup Tandan / Walter G. Bradley, "Amyotrophic Lateral Sclerosis: Part I. Clinical Features, Pathology, and Ethical Issues in Management," Annals of Neurology 18 (3) (Sept. 1985): 271-80; David Oliver, "Ethical issues in palliative care - an overview", proceedings of the Third International Symposium on Amyotrophic Lateral Sclerosis / Motor Neurone Disease, Palliative Medicine 7 (4) (Supp. 1993): 15-20.
___5 H. Hayashi / S. Kato, "Physicians' Attitude for ALS Patient in Respiratory Failure", The Committee of Intractable Degenerative CNS Disease, Ministry of Health and Welfare of Japan, Chairman, N. Yanagisawa (1994); H. Hayashi / S. Kato / A. Kawada, "Amyotrophic Lateral Sclerosis Patients Living Beyond Respiratory Failure," Journal of Neurological Science 105 (1991): 73-78.
___6 Estate of Silverstein, supra fn. 4.
___7 Estate of E. R. McDonald, et al., "Survival in ALS: The Role of Psychological Factors", Archives of Neurology 51 (1994): 17-23.
___8 Robert M. Veatch, A Theory of Medical Ethics, Basic Books, Inc., 1981, p. 10.
___9 Jay Katz, The Silent World of Doctor and Patient, The Free Press, 1984, pp. 2-4.
___10 The recent history of medical care in the U.S. has now entered a third period, one of transition to the age of the payer (or, the age of bureaucracy). Dramatic expansion of the role of managed care organizations has modified the balance of power in the traditional physician-patient-family triad. Mark Siegler, "The External Control of Private Medical Decisions: A Major Change in the Doctor-Patient Relationship", Journal of the American Geriatrics Society 40 (April 1992): 410-12. Though the full impact of these systemic changes cannot yet be discerned, it is sure to present new challenges to patient autonomy and to the use of advance directives.
___11 Silverstein, supra fn. 4.
___12 A. H. Moss / P. Casey / C. B. Stocking, et al., "Home Ventilation for Amyotrophic Lateral Sclerosis Patients: Outcomes, Costs, and Patient, Family, and Physician Attitudes", Neurology 43 (2) (Feb. 1993): 438-43.
___13 Silverstein, supra fn. 4.
___14 See Hans-Martin Sass, "Professional Organizations and Professional Ethics: A European View", in: Edmund D. Pellegrino / Robert M. Veatch / John P. Langan, eds: Ethics, Trust, and the Professions: Philosophical and Cultural Aspects, Georgetown Univ. Press, 1991, pp. 263-84.
___15 Rihito Kimura, "Fiduciary Relationships and the Medical Profession: A Japanese Point of View", in: Edmund D. Pellegrino / Robert M. Veatch / John P. Langan, eds: Ethics, Trust, and the Professions: Philosophical and Cultural Aspects, Georgetown Univ. Press, 1991, pp. 235-45.
___16 Hideaki Hayashi, "Shinkei Naikashikkan Kanjya no chokiryoyo ni tomonau mondai - ALS Kanjya o chuushinni (Problems relating to long-term care patients with Neuro-internal Disease - focusing on ALS patients)", Nippon Iji Shimpo, Japan Medical Journal, No. 3623, Tokyo, 1993.
___17 Report of the Ministry of Health and Welfare of Japan, "Prognosis of Motor Neuron Disease in Japan", (1982).
___18 Edward Anthony Oppenheimer, "Decision-making in the Respiratory Care of Amyotrophic Lateral Sclerosis: Should Home Mechanical Ventilation be Used?", Proceedings of the Third International Symposium on Amyotrophic Lateral Sclerosis / Motor Neurone Disease, Palliative Medicine 7 (4) (Supp. 1993): 31-36.
___19 Marie Oxtoby / Marit Kikaas, "Multidisciplinary Management from Day One: The Neuro-care Approach to Motor Neurone Disease", Proceedings of the Third International Symposium on Amyotrophic Lateral Sclerosis / Motor Neurone Disease, Palliative Medicine 7 (4) (Supp. 1993): 31-36.
___20 Oppenheimer, supra fn. 18.
___21 Moss, supra fn. 12.
___22 See Susan Carroll-Thomas, "Ethics and the Clinician: The Daily Experience with Motor Neurone Disease", Proceedings of the Third International Symposium on Amyotrophic Lateral Sclerosis / Motor Neurone Disease, Palliative Medicine 7 (4) (Supp. 1993): 11-13.
___23 Moss, supra fn. 12.
___24 See Keiko Komatsubara, "Kurumaisu deno Borantiaa ("A Volunteer in the Wheelchair)", Hito ("Human Being") Magazine, Tokyo, August 1992.
___25 Moss, supra fn. 12.
___26 See J. F. Turner / T. Mason / D. Anderson, et al., "Physicians' Ethical Responsibilities under Co-Pay Insurance: Should Potential Fiscal Liability Become Part of Informed Consent?", Journal of Clinical Ethics 6 (1) (Spring 1995): 68-72; Nancy S. Jecker, "Being a Burden on Others", Journal of Clinical Ethics 4 (1) (Spring 1993): 16-20.
___27 Silverstein, supra fn. 4.
___28 President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment: Ethical, Medical, and Legal Issues in Treatment Decisions, U.S. Govt. P.O. 1983, pp. 73-77.
___29 See sources cited, supra fn. 5; H. Hayashi / S. Kato, "Total Manifestations of Amyotrophic Lateral Sclerosis: ALS in the Totally Locked-in State", Journal of Neurological Science 93 (1989): 19-55.
___31 Report of the Ethics and Humanities Subcommittee of the American Academy of Neurology, "Position Statement: Certain Aspects of the Care and Management of Profoundly and Irreversibly Paralyzed Patients with Retained Consciousness and Cognition", Neurology 43 (January 1993): 222-23.
___32 In re Quinlan, 355 A.2d 647 (1976), cert. denied sub nom Garger, 429 U.S. 922 (1976).
___33 For comprehensive analysis of the law governing the "right to die" in the U.S., see Alan Meisel, The Right to Die, New York: Wiley Law Publications, 1989.
___34 Hans-Martin Sass / Frederick O. Bonkovsky / Akira Akabayashi / Rita Kielstein / Robert S. Olick, "Advance Health Care Documents in Multicultural Perspectives", Jahrbuch für Recht und Ethik, vol. 4, 1996; Erwin Bernat / Hans-Georg Koch / Alan Meisel, "Das 'Patiententestament' und der 'Stellvertreter in Gesundheitsangelegenheiten'. Ein Vergleich des deutschen, amerikanischen und japanischen Rechts", Jahrbuch für Recht und Ethik, vol. 4, 1996.
___35 Bernat, supra fn. 34.
___36 Sass, et al., supra fn. 34.
___37 The lower district court opinion in the Makino case is discussed in George J. Annas / Frances H. Miller, "The Empire of Death: How Culture and Economics Affect Informed Consent in the U.S., the U.K., and Japan", Ameriacn Journal of Law & Medicine XX (4) (1994): 357-394.
___38 Rihito Kimura, "Death, Dying and Advance Directives in Japan - A Socio-cultural and Legal Point of View", Johns Hopkins Univ. Press, 1998.
___39 John LaPuma / D. Orentlicher / R. Moss, "Advance Directives on Admission: Clinical Implications and Analysis of the Patient Self-Determination Act of 1990", Journal of the American Medical Association 266 (1991): 410-12.
___40 Joanne Lynn / J. Teno, "After the Patient Self-Determination Act: The Need for Empirical Research on Formal Advance Directives", Hastings Center Report (Jan.-Feb. 1993): 20-21; Joan. Teno, et al., "The Use of Formal Advance Directives among Patients with HIV-Related Diseases", Journal of General Internal Medicine 5 (1990): 490-94.
___41 Sass, et al., supra fn. 34.
___42 The SUPPORT Principal Investigators, "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 (20) (November 22/29, 1995): 1591-98.
___43 D. L. Hughes / P. A. Singer, "Family Physicians' Attitudes Toward Advance Directives", Canadian Medical Association Journal 146 (11) (June 1, 1992): 1937-44.
___44 Jaya Virmani / Lawrence J. Schneiderman / Robert M. Kaplan, "Relationship of Advance Directives to Physician-Patient Communication", Archives of Internal Medicine 154 (Apr. 25, 1994): 909-913.
___45 David Orentlicher, "The Illusion of Patient Choice in End-of-Life Decisions", Journal of the American Medical Association 267 (15) (April 15, 1992): 2101-04 (summarizing recent empirical studies).
___46 Silverstein, supra fn. 4.
___47 Moss, supra fn. 12.
___48 Silverstein, supra fn. 12.
___49 Moss, supra fn. 12.
___50 Alvin Moss, et al., "Amyotrophic Lateral Sclerosis Patients on Long-term Mechanical Ventilation: Decision Making, Advance Directives, and Outcomes", (unpublished paper, Feb. 1995).
___53 See sources cited, supra fn. 5.
___54 Linda Emanuel, "Advance Directives: What Have We Learned So Far?", Journal of Clinical Ethics 4 (1) (Spring 1993): 8-16.
___55 Robert S. Olick, "Approximating Informed Consent and Fostering Communication: The Anatomy of an Advance Directive", Journal of Clinical Ethics 2 (3) (Fall 1991): 181-95.
___56 N. R. Zweibel / C. K. Cassel, "Treatment Choices at the End of Life: A Comparison of Decisions by Older Patients and their Physician-Selected Proxies", Gerontologist 29 (1989): 615-21; A. B. Seckler / D. E. Meier / M. Mulvihill / B. E. Cammer Paris, "Substituted Judgment: How Accurate Are Proxy Predictions?", Annals of Internal Medicine 115 (1991): 92-98.
___57 Nancy S. Jecker, "Being a Burden on Others", Journal of Clinical Ethics 4 (1) (Spring 1993): 16-20.
___58 P. Lambert / J. M. Gibson / P. Nathanson, "The Values History: An Innovation in Surrogate Medical Decision-Making", Law, Medicine & Health Care 18 (Fall 1990): 202-12.
___59 Rita Kielstein / Hans-Martin Sass, "Using Stories to Assess Values and Establish Medical Directives", Kennedy Institute of Ethics Journal 3 (3) (Sept. 1993): 303-25.
___60 The SUPPORT Principal Investigators, supra fn. 42.
___61 Orentlicher, supra fn. 45.
___62 Moss, supra fn. 12.
___63 R. M. Peters, "Matching Physician Practice Style to Patient Informational Issues and Decision-making Preferences. An Approach to Patient Autonomy and Medical Paternalism Issues in Clinical Practice", Archives of Family Medicine 3 (9) (Sept. 1994): 760-63.
___64 Madison Powers / Carmen Kaminsky / Motoko Hayashi, "AIDS and Advance Directives: Clinical, Legal and Ethical Perspectives in Japan, Germany and the United States", Jahrbuch für Recht und Ethik, vol. 4, 1996.
___65 Silverstein, supra fn. 4.
___66 Ashwini Sehgal / Alison Galbraith / Margaret Chesney, et al., "How Strictly Do Dialysis Patient Want Their Advance Directives Followed?", Journal of the American Medical Association 267 (1) (Jan. 1, 1992): 59-63.
___67 See, e.g., Christopher V. Chambers / James J. Diamond / Robert L. Perkel / Lori A. Lasch, "Relationship of Advance Directives to Hospital Charges in a Medicare Population", Archives of Internal Medicine 154 (Mar. 14, 1994): 541-47.
___68 Anne A. Scitovsky, "'The High Cost of Dying' Revisited", Milbank Quarterly 72 (4) (1994): 561-91.
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