title: End-of-life decision making is more than rational.
abstract: Most medical models of end-of-life decision making by patients assume a rational autonomous adult obtaining and deliberating over information to arrive at some conclusion. If the patient is deemed incapable of this, family members are often nominated as substitutes, with assumptions that the family are united and rational. These are problematic assumptions. We interviewed 23 outpatients with cancer about the decision not to resuscitate a patient following cardiopulmonary arrest and examined their accounts of decision making using discourse analytical techniques. Our analysis suggests that participants access two different interpretative repertoires regarding the construct of persons, invoking a 'modernist' repertoire to assert the appropriateness of someone, a patient or family, making a decision, and a 'romanticist' repertoire when identifying either a patient or family as ineligible to make the decision. In determining the appropriateness of an individual to make decisions, participants informally apply 'Sanity' and 'Stability' tests, assessing both an inherent ability to reason (modernist repertoire) and the presence of emotion (romanticist repertoire) which might impact on the decision making process. Failure to pass the tests respectively excludes or excuses individuals from decision making. The absence of the romanticist repertoire in dominant models of patient decision making has ethical implications for policy makers and medical practitioners dealing with dying patients and their families.
authors.affiliation: Royal Adelaide Hospital Cancer Research Centre, Royal Adelaide Hospital, Australia. jeliot@mail.rah.sa.gov.au
authors.forename: Jaklin A
authors.initials: JA
authors.lastname: Eliott
authors.forename: Ian N
authors.initials: IN
authors.lastname: Olver
mesh_terms: D001315:Australia; D003657:Decision Making / Q000941:ethics; D004644:Emotions; D005190:Family; D005260:Female; D006801:Humans; D007406:Interview, Psychological; D008037:Linguistics; D008297:Male; D016743:Mental Competency; D008875:Middle Aged; D008962:Models, Theoretical; D009369:Neoplasms / Q000523:psychology; D010358:Patient Participation; D010819:Physician's Role; D019727:Proxy; D016414:Resuscitation Orders; D013727:Terminal Care / Q000941:ethics