Correspondence between patients' preferences and surrogates' understandings for dying and death

J Pain Symptom Manage. 2005 Dec;30(6):498-509. doi: 10.1016/j.jpainsymman.2005.06.006.


We examined the agreement between hospice patients' preferences for desired experiences during the last week of life and their surrogates' understandings of those preferences (n=92 pairs). Analyses included percent agreement, intraclass correlation coefficients, and Bland-Altman plots. Demographic characteristics and communication measures associated with better agreement were identified using t-tests and analysis of variance. The median number of items on which patients and family members agreed was 14 of 30 (interquartile range, IQR 10, 16). Preferences with good agreement included both observable and non-observable experiences. Patients who reported having had conversations about treatment preferences and who reported that their surrogates knew their preferences reported higher agreement. Surrogates display a better understanding of what is important to patients at the end of life if they have had discussions about patient preferences. These discussions may enable surrogates and clinicians to more accurately follow patient preferences.

Publication types

  • Controlled Clinical Trial
  • Research Support, Non-U.S. Gov't
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Advance Directives*
  • Aged
  • Attitude to Death*
  • Communication*
  • Decision Making
  • Family*
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Hospice Care / statistics & numerical data*
  • Humans
  • Male
  • Middle Aged
  • Proxy / statistics & numerical data*
  • Statistics as Topic
  • Surveys and Questionnaires
  • Washington / epidemiology