The end of a life: why intensivists should care (more).

T he 36 members of the Robert Wood Johnson Foundation (RWJF)-sponsored Critical Care End-of-Life Peer Workgroup, and the 15 nurse-physician teams from 15 of the intensive care units affiliated with this workgroup, have authored the results of an important study published by Dr. Clarke and colleagues (1) in this month’s issue of Critical Care Medicine. The RWJF is to be commended for sponsoring this type of topical healthcare research, and the study authors are to be congratulated for providing a strong start to a “field of research opportunity” within the discipline of critical care medicine. The formalization for end-of-life care (EOLC) strategies and evaluations in critical care is long overdue. This current study should prompt all of us involved with critical care to take a moment and reflect—why has it taken so long for this type of information to be critically reviewed, and why is it only now that we, as a committed group of medical professionals who routinely care for the dying, are finally beginning to focus some attention on one of the most important components of health care? We also should ask ourselves with stringent introspection whether we, as individual practitioners, have focused our efforts effectively enough for those patients with whom we become involved at the end of their lives. Before continuing with this article, please spend a couple of seconds right now to review your last few experiences with end-of-life patients in your intensive care unit (ICU)—and be honest! The end of a life is probably the most intensely personal and certainly one of the most powerful emotional periods in life that every human endures (yes, endures is the correct word). Fortunately, or unfortunately, no one person has the opportunity to preemptively predict or comprehend his or her individual reactions to this final stage of biological existence. This in itself is reason enough why trained professionals, from a variety of backgrounds, are obligated to prepare and provide the professional skills, environment, management processes, emotional support strategies, and evaluative structure to improve the overall quality of care for those managing through the end of a life. The end of a life in the critical care environment, however, can still potentially become an intensely public experience and, therefore, can become one of the most powerfully uncomfortable and inhumane experiences that any human will endure. This also is reason enough why intensivists and critical care professionals are obligated to do everything within their power and control to better manage EOLC for the benefit of their patients, the families or friends, and themselves. Perhaps as important, the institutions that manage EOLC in their critical care units are also obligated to provide the support, resources, and infrastructure to the ICU professionals so that the optimal level of care is provided at the end of a life. What, then, has been accomplished with the current study from this RWJF workgroup? The scientific strategy accomplished a detailed literature review from the English language regarding end-of-life issues in the acute care and ICU settings. The studies obtained from this comprehensive literature review then were subjected to an iterative process of consensus development by the authors (not a metaanalysis) to identify, develop, and refine several EOLC domains. Subsequently, quality indicators and a variety of behaviors or interventions were coupled within each of these identified EOLC domains using this same iterative process of consensus. The stated primary goal of the study was to address the documented deficiencies in EOLC for the ICU by identifying key EOLC domains and related quality indicators— developed through this consensus process. The secondary goal was to propose specific clinician and organizational behaviors or interventions that might improve EOLC quality indicators. The scientific results accomplished were that seven domains were identified as important to consider for EOLC in the ICU environment. These are patientand family-centered decision making, communication, continuity of care, emotional and practical support, symptom management and comfort care, spiritual support, and emotional and organizational support for ICU clinicians. Additionally, numerous (53) EOLC quality indicators were developed to populate these seven domains, and then another layer of information was similarly developed that provides examples ( 100) of clinician and/or organizational behaviors or interventions that could better address these quality indicators. These domains, quality indicators, and listing of behaviors or interventions are to be posted for complete review and consideration on the RWJF Web site (http://www.rwjf.org). Given the stated goals of the study, the workgroup did achieve its end points. The difficulty, however, is trying to decide if the developed domains, quality indicators, and examples of behaviors or interventions are actually going to become valid. A few of the concerns for this workgroup’s research include the following: This is an observational, descriptive study in essence and certainly not any form of a meta-analysis. Therefore, the suggested results could, or should, be viewed as pilot data and not as definitive end points. To date, no survey data have been developed to validate the proposed domains and their populated indicators, behaviors, or interventions. This will be an important next step to provide some form of validation for the workgroup’s results. Not surprisingly, the workgroup and the participant ICUs have a strong bias toward those in academic centers being the preponderant types of workgroup participants. Validation for the nonacademic settings should be considered, perhaps even before any of the previously men*See also p. 2255.