title: Improving advance care planning by accommodating family preferences.
abstract: BACKGROUND
  Family members often lack the knowledge of patients' values and preferences needed to function well as surrogate decision-makers.
  
  
  OBJECTIVE
  To determine whether differences in values and preferences for the advance care planning process may be reasons family members are inadequately informed to act as surrogates.
  
  
  METHODS
  Face-to-face and telephone surveys using structured questionnaires.
  
  
  METHODS
  Two hundred forty-two pairs of dialysis patients and their designated surrogates.
  
  
  METHODS
  Content and number of end-of-life care discussions; patient and surrogate attitudes toward having patients express preferences explicitly; factors most important to surrogates in decision making; and within-pair agreement about the values of suffering and certainty.
  
  
  RESULTS
  Ninety percent of patients designated a family member as their surrogate. In most cases, having more conversations about end-of-life issues did not increase surrogate knowledge of patients' values or preferences. Surrogates wanted written and oral instructions more often than patients wanted to provide them (62% vs. 39%, p < 0.001). Knowing the patient's wish to stop treatment in the present condition was more important to most surrogates than the physician's recommendation to stop treatment (62% vs. 45%, p < 0.001). Compared to patients, surrogates were less likely to want to prolong the patient's life if it entailed suffering (12% vs. 23%, p < 0.01) and were more concerned about being certain before stopping life-sustaining treatments (85% vs. 77%, p < 0.02).
  
  
  CONCLUSIONS
  Differences in preferences for the advance care planning process between patients and their surrogates and failure to discuss specific end-of-life values and preferences may explain why surrogates often lack information needed to serve as surrogate decision-makers.
authors.affiliation: Delmarva Foundation for Medical Care, Easton, Maryland, USA.
authors.forename: S C
authors.initials: SC
authors.lastname: Hines
authors.forename: J J
authors.initials: JJ
authors.lastname: Glover
authors.forename: A S
authors.initials: AS
authors.lastname: Babrow
authors.forename: J L
authors.initials: JL
authors.lastname: Holley
authors.forename: L A
authors.initials: LA
authors.lastname: Badzek
authors.forename: A H
authors.initials: AH
authors.lastname: Moss
mesh_terms: D000293:Adolescent; D000328:Adult; D016223:Advance Directives; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003657:Decision Making; D003710:Demography; D005190:Family / Q000523:psychology*; D005260:Female; D006436:Hemodialysis Units, Hospital / Q000706:statistics & numerical data; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D007676:Kidney Failure, Chronic / Q000523:psychology / Q000628:therapy; D007872:Legal Guardians / Q000523:psychology; D008297:Male; D008875:Middle Aged; D009518:New York; D010347:Patient Care Planning; D011795:Surveys and Questionnaires