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end-of-life care, family views



  1. Tolle, Susan W
  2. Tilden, Virginia P
  3. Rosenfeld, Anne G
  4. Hickman, Susan E


Background: In response to intense national pressure to improve care of the dying, efforts have been made to determine problems or barriers to optimal care. However, prior research is limited by such factors as setting, focus, and sampling.


Objectives: The purpose of this study was to identify barriers to optimal care of a population-based representative sample of decedents across a full range of settings in which death occurred.


Methods: Families were contacted 2 to 5 months after decedents' deaths by using data on their death certificates. Over a 14-month period, telephone interviews were conducted with 475 family informants who had been involved in caring for the patient in the last month of life. Interviews were standardized by use of a 58-item structured questionnaire.


Results: Data show a high frequency of advance planning (68%) and a high level of respect by clinicians for patient-family preferences about end-of-life location and treatment decisions. Family satisfaction with care was generally high, even though pain was a problem in one third of the sample of decedents.


Conclusions: Barriers to optimal care of the dying remain, despite a generally positive overall profile; barriers include level of pain and management of pain, as well as some dissatisfaction with physician availability.