A content analysis of forms, guidelines, and other materials documenting end-of-life care in intensive care units

Abstract

Objective: The purpose of this study was to determine the extent to which data entry forms, guidelines, and other materials used for documentation in intensive care units (ICUs) attend to 6 key end-of-life care (EOLC) domains: 1) patient and family-centered decision making, 2) communication, 3) continuity of care, 4) emotional and practical support, 5) symptom management and comfort care, and 6) spiritual support. A second purpose was to determine how these materials might be modified to include more EOLC content and used to trigger clinical behaviors that might improve the quality of EOLC.

Participants: Fifteen adult ICUs-8 medical, 2 surgical, and 4 mixed ICUs from the United States, and 1 mixed ICU in Canada, all affiliated with the Critical Care End-of-Life Peer Workgroup

Methods: Physician-nurse teams in each ICU received detailed checklists to facilitate and standardize collection of requested documentation materials. Content analysis was performed on the collected documents, aimed at characterizing the types of materials in use and the extent to which EOLC content was incorporated.

Measurements and main results: The domain of symptom management and comfort care was integrated most consistently on forms and other materials across the 15 ICUs, particularly pain assessment and management. The 5 other EOLC domains of patient and family centered decision-making, communication, emotional and practical support, continuity of care, and spiritual support were not well-represented on documentation. None of the 15 ICUs supplied a comprehensive EOLC policy or EOLC critical pathway that outlined an overall, interdisciplinary, sequenced approach for the care of dying patients and their families. Nursing materials included more cues for attending to EOLC domains and were more consistently preprinted and computerized than materials used by physicians. Computerized forms concerning EOLC were uncommon. Across the 15 ICUs, there were opportunities to make EOLC- related materials more capable of triggering and documenting specific EOLC clinical behaviors.

Conclusions: Inclusion of EOLC items on ICU formatted data entry forms and other materials capable of triggering and documenting clinician behaviors is limited, particularly for physicians. Standardized scales, protocols, and guidelines exist for many of the EOLC domains and should be evaluated for possible use in ICUs. Whether such materials can improve EOLC has yet to be determined.