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

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.

Quality indicators for end-of-life care in the intensive care unit.

OBJECTIVE: The primary goal of this study was to address the documented deficiencies in end-of-life care (EOLC) in intensive care unit settings by identifying key EOLC domains and related quality indicators for use in the intensive care unit through a consensus process. A second goal was to propose specific clinician and organizational behaviors and interventions that might be used to improve these EOLC quality indicators. PARTICIPANTS: Participants were the 36 members of the Robert Wood Johnson Foundation (RWJF) Critical Care End-of-Life Peer Workgroup and 15 nurse-physician teams from 15 intensive care units affiliated with the work group members. Fourteen adult medical, surgical, and mixed intensive care units from 13 states and the District of Columbia in the United States and one mixed intensive care unit in Canada were represented. METHODS: An in-depth literature review was conducted to identify articles that assessed the domains of quality of EOLC in the intensive care unit and general health care. Consensus regarding the key EOLC domains in the intensive care unit and quality performance indicators within each domain was established based on the review of the literature and an iterative process involving the authors and members of the RWJF Critical Care End-of-Life Peer Workgroup. Specific clinician and organizational behaviors and interventions to address the proposed EOLC quality indicators within the domains were identified through a collaborative process with the nurse-physician teams in 15 intensive care units. MEASUREMENTS AND MAIN RESULTS: Seven EOLC domains were identified for use in the intensive care unit: a) patient- and family-centered decision making; b) communication; c) continuity of care; d) emotional and practical support; e) symptom management and comfort care; f) spiritual support; and g) emotional and organizational support for intensive care unit clinicians. Fifty-three EOLC quality indicators within the seven domains were proposed. More than 100 examples of clinician and organizational behaviors and interventions that could address the EOLC quality indicators in the intensive care unit setting were identified. CONCLUSIONS: These EOLC domains and the associated quality indicators, developed through a consensus process, provide clinicians and researchers with a framework for understanding quality of EOLC in the intensive care unit. Once validated, these indicators might be used to improve the quality of EOLC by serving as the components of an internal or external audit evaluating EOLC continuous quality improvement efforts in intensive care unit settings.