Introduction: The Doctor-Proxy Relationship: An Untapped Resource

See New York Task Force on Life and the Law, When Others Must Choose Deciding for Patients Without Capacity (New York: New York State Task Force on Life and the Law, 1992); and Emanuel E.J. and Emanuel L.L. , “Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis,” JAMA, 267 (1992): 2067–71.

See Pellegrino E.D. , eds., Transcultural Dimensions in Medical Ethics (Frederick: University Publishing Group, 1992); and Robinson M.K. DeHaven M.J. , and Koch K.A. , “Effects of the Patient Self-Determination Act on Patient Knowledge and Behavior,” Journal of Family Practice, 37 (1993): 363–68.

*We refer to the person for whom substitute health care decisions are made as the “patient” and the substitute decider as the “proxy” or “surrogate,” depending on how the responsibilities are assumed. For purposes of clarity, the patient is referred to as “he” and the proxy or surrogate as “she.”

See President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Making Health Care Decisions: A Report on the Legal and Ethical Implications of Informed Consent in the Patient-Practitioner Relationship (Washington, D.C.: U.S. Government Printing Office, 1982).

**The confusion about substitute decision-makers is compounded by the inconsistency in identifying the different types of deciders, how they assume their roles, and the scope of their rights, responsibilities, and authority. In the interests of accuracy and clarity, we distinguish between proxy and surrogate in the following ways:

(1) Legally appointed proxy or agent refers to a person who has been chosen and legally appointed by a patient to be the substitute health care decision-maker.

(2) Surrogate by state law refers to a person whose authority to make health care decisions for someone else is based on state statute or case law.

(3) Informal surrogate refers to a person who is asked by the medical team to help make treatment decisions because no one has been appointed by the patient or legally authorized.

See Levine C.L. and Zuckerman C. , “The Trouble with Families: Toward an Ethic of Accommodation,” Annals of Internal Medicine, 130 (1999): 148–52; and Levine C.L. , “Family Caregivers: Hospitals' Most Vulnerable Partners,” Trustee, Feb. (1999): 24–25.

See Emanuel E.J. and Emanuel L.L. , “Four Models of the Physician-Patient Relationship,” JAMA, 267 (1992): 2221–26; and Katz J. , “Informed Consent in the Therapeutic Relationship,” in Reich W.T. , ed., Encyclopedia of Bioethics (Georgetown: Macmillan, 1978): 770–78.

See Annas G.J. , “The Health Care Proxy and the Living Will,” N. Engl. J. Med., 324 (1991): 1210–13.

See Lynn J. , “Why I Don't Have a Living Will,” Law, Medicine & Health Care, 19 (1991): 101–04; Brett A.S. , “Limitations of Listing Specific Medical Interventions in Advance Directives,” JAMA, 266 (1991): 825–28; and Dubler N.N. and Nimmons D. , Ethics on Call (New York: Harmony Books, 1992): at 351–54, 357.

Sabatino C.P. , “The Legal and Functional Status of the Medical Proxy: Suggestions for Statutory Reform,” Journal of Law, Medicine & Ethics, 27 (1999): 52–68.

See Lynn , supra note 9; Schneiderman L.F. Teetzel H. , and Kalmanson A.G. , “Who Decides Who Decides? When Disagreement Occurs Between the Physician and the Patient's Appointed Proxy About the Patient's Decision-Making Capacity,” Archives of Internal Medicine, 155 (1995): 793–95; Danis M. , “A Prospective Study of Advance Directives for Life-Sustaining Care,” N. Engl. J. Med., 324 (1991): 882–88; and Loewy E.H. and Carlson R.W. , “Talking, Advance Directives, and Medical Practice,” Archives of Internal Medicine, 154 (1994): 2265–67.

See Epstein A.M. , “Using Proxies to Evaluate Quality of Life: Can They Provide Valid Information About Patient's Health Status and Satisfaction with Medical Care?,” Medical Care, 27 (1989): S91–S98; and Malloy T. , “The Influence of Treatment Descriptions on Advance Medical Directive Decisions,” Journal of the American Geriatric Society, 40 (1992): 1255–60.

See Dubler N.N. , “The Doctor-Proxy Relationship: The Neglected Connection,” Kennedy Institute of Ethics Journal, 5 (1995): 289–306.

See Zinberg J.M. , “Decisions for the Dying: An Empirical Study of Physicians' Responses to Advance Directives,” Vermont Law Review, 13 (1989): 445–91.

Patient Self-Determination Act, 42 U.S.C.A. § 1395cc(f) (1992).

Statistical data on the percentage of people with advance directives vary. Studies during the 1990s place the figure at between 15 to 25 percent. See Miles S.H. Koepp R. , and Weber E.P. , “Advance End-of-Life Treatment Planning: A Research Review,” Archives of Internal Medicine, 156 (1996): 1062–68; Nolan M.T. and Bruder M. , “Patient Attitudes Toward Advance Directives and End-of-Life Treatment Decisions,” Nursing Outlook, 45 (1997): 204–08; and Sachs G.A. Stocking C.D. , and Miles S.H. , “Empowerment of the Older Patient? Randomized, Controlled Trial to Increase Discussion and Use of Advance Directives,” Journal of the American Geriatric Society, 40 (1991): 269–73. Some studies indicate that the range falls as low as 4 to 7 percent. See LaPuma J. Orentlicher D. , and Moss R. , “Advance Directives on Admission: Clinical Implications and Analysis of the Patient Self Determination Act of 1990,” JAMA, 266 (1991): 402–05; and Emanuel L.L. , “Advance Directives for Medical Care: A Case for Greater Use,” N. Engl. J. Med., 324 (1991): 889–95. One explanation for the variation is disparity by age. It has been reported that approximately 5 percent of adults under forty years of age have advance directives, while an estimated 70 percent of the elderly population has such instruments. See Miles Koepp , and Webber , supra.

See SUPPORT Principal Investigators, “A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients,” JAMA, 274 (1995): 1591–98; Danis , supra note 11; Lynn , supra note 9; Lewin T. , “Ignoring ‘Right to Die’ Directives, Medical Community is Being Sued,” New York Times, June 2, 1996, at Al; and Hentoff N. , “Doctors Who Ignore Living Wills,” Washington Post, Aug. 30, 1995.

See SUPPORT Principal Investigators, supra note 17.

See Dubler , supra note 13.

See Zeleznik J. , “The Doctor-Proxy Relationship: Perception and Communication,” Journal of Law, Medicine & Ethics, 27 (1999): 13–19.

Collopy B.J. , “The Moral Underpinning of the Proxy-Provider Relationship: Issues of Trust and Distrust,” Journal of Law, Medicine & Ethics, 27 (1999): at 42.

Kapp M.B. , Commentary, “Anxieties as a Legal Impediment to the Doctor-Proxy Relationship,” Journal of Law, Medicine & Ethics, 27 (1999): at 71.

Powell T. , “Extubating Mrs. K: Psychological Aspects of Surrogate Decision Making,” Journal of Law, Medicine & Ethics, 27 (1999): at 82.