Improving advance care planning by accommodating family preferences

J Palliat Med. Winter 2001;4(4):481-9. doi: 10.1089/109662101753381629.


Context: 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.

Design: Face-to-face and telephone surveys using structured questionnaires.

Participants: Two hundred forty-two pairs of dialysis patients and their designated surrogates.

Main outcome measures: 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.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Advance Directives*
  • Aged
  • Aged, 80 and over
  • Child
  • Child, Preschool
  • Communication*
  • Decision Making*
  • Demography
  • Family / psychology*
  • Female
  • Hemodialysis Units, Hospital / statistics & numerical data
  • Humans
  • Infant
  • Infant, Newborn
  • Kidney Failure, Chronic / psychology
  • Kidney Failure, Chronic / therapy
  • Legal Guardians / psychology
  • Male
  • Middle Aged
  • New York
  • Patient Care Planning*
  • Surveys and Questionnaires