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.
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.
Authors: Joy Chieh-Yu Chen; Bjorg Thorsteinsdottir; Lisa E Vaughan; Molly A Feely; Robert C Albright; Macaulay Onuigbo; Suzanne M Norby; Christy L Gossett; Margaret M D'Uscio; Amy W Williams; John J Dillon; LaTonya J Hickson Journal: Clin J Am Soc Nephrol Date: 2018-07-19 Impact factor: 8.237
Authors: Ann M O'Hare; Nancy Armistead; Wendy L Funk Schrag; Louis Diamond; Alvin H Moss Journal: Clin J Am Soc Nephrol Date: 2014-07-17 Impact factor: 8.237
Authors: Betty S Black; Linda A Fogarty; Hilary Phillips; Thomas Finucane; David J Loreck; Alva Baker; David M Blass; Peter V Rabins Journal: J Aging Health Date: 2009-03-05