title: Contracts, covenants and advance care planning: an empirical study of the moral obligations of patient and proxy.
abstract: Previously we had speculated that the patient-proxy relationship existed on a contractual to covenantal continuum. In order to assess this hypothesis, and to better understand the moral obligations of the patient-proxy relationship, we surveyed 50 patient-proxy pairs as well as 52 individuals who had acted as proxies for someone who had died. Using structured vignettes representative of three distinct disease trajectories (cancer, acute stroke, and congestive heart failure), we assessed whether respondents believed that proxies should follow explicit instructions regarding life-sustaining therapy and act contractually or whether more discretionary or covenantal judgments were ethically permissible. Additional variables included the valence of initial patient instructions--for example, "to do nothing" or "to do everything"--as well as the quality of information available to the proxy. Responses were graded on a contractual to covenantal continuum using a modified Likert scale employing a prospectively scored survey instrument. Our data indicate that the patient-proxy relationship exists on a contractual to covenantal continuum and that variables such as disease trajectory, the clarity of prognosis, instructional valence, and the quality of patient instructions result in statistically significant differences in response. The use of interpretative or covenantal judgment was desired by patients and proxies when the prognosis was grim, even if initial instructions were to pursue more aggressive care. Nonetheless, there was a valence effect: patients and proxies intended that negative instructions to be left alone be heeded. These data suggest that the delegation of patient self-determination is morally complex. Advance care planning should take into account both the exercise of autonomy and the interpretative burdens assumed by the proxy. Patients and proxies think inductively and contextually. Neither group viewed deviation from patient instructions as a violation of the principal's autonomy. Instead of adhering to narrow notions of patient self-determination, respondents made nuanced and contextually informed moral judgments. These findings have implications for patient education as well as the legal norms that guide advance care planning.
authors.affiliation: Division of Medical Ethics, Weill Medical College of Cornell University, New York, NY 10021, USA.
authors.forename: Joseph J
authors.initials: JJ
authors.lastname: Fins
authors.forename: Barbara S
authors.initials: BS
authors.lastname: Maltby
authors.forename: Erika
authors.initials: E
authors.lastname: Friedmann
authors.forename: Michele G
authors.initials: MG
authors.lastname: Greene
authors.forename: Kaye
authors.initials: K
authors.lastname: Norris
authors.forename: Ronald
authors.initials: R
authors.lastname: Adelman
authors.forename: Ira
authors.initials: I
authors.lastname: Byock
mesh_terms: D032722:Advance Care Planning / Q000941:ethics*; D000368:Aged; D032982:Contracts / Q000941:ethics*; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009014:Morals; D010358:Patient Participation; D019727:Proxy