Randomized Trial of Communication Facilitators to Reduce Family Distress and Intensity of End-of-Life Care.

RATIONALE: Communication with family of critically ill patients is often poor and associated with family distress. OBJECTIVES: To determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care. METHODS: We conducted a randomized trial at two hospitals. Eligible patients had a predicted mortality greater than or equal to 30% and a surrogate decision maker. Facilitators supported communication between clinicians and families, adapted communication to family needs, and mediated conflict. MEASUREMENTS AND MAIN RESULTS: Outcomes included depression, anxiety, and post-traumatic stress disorder (PTSD) among family 3 and 6 months after ICU and resource use. We identified 488 eligible patients and randomized 168. Of 352 eligible family members, 268 participated (76%). Family follow-up at 3 and 6 months ranged from 42 to 47%. The intervention was associated with decreased depressive symptoms at 6 months (P = 0.017), but there were no significant differences in psychological symptoms at 3 months or anxiety or PTSD at 6 months. The intervention was not associated with ICU mortality (25% control vs. 21% intervention; P = 0.615) but decreased ICU costs among all patients (per patient: $75,850 control, $51,060 intervention; P = 0.042) and particularly among decedents ($98,220 control, $22,690 intervention; P = 0.028). Among decedents, the intervention reduced ICU and hospital length of stay (28.5 vs. 7.7 d and 31.8 vs. 8.0 d, respectively; P < 0.001). CONCLUSIONS: Communication facilitators may be associated with decreased family depressive symptoms at 6 months, but we found no significant difference at 3 months or in anxiety or PTSD. The intervention reduced costs and length of stay, especially among decedents. This is the first study to find a reduction in intensity of end-of-life care with similar or improved family distress. Clinical trial registered with www.clinicaltrials.gov (NCT 00720200).

Hospital variation and temporal trends in palliative and end-of-life care in the ICU.

OBJECTIVES: Although studies have shown regional and interhospital variability in the intensity of end-of-life care, few data are available assessing variability in specific aspects of palliative care in the ICU across hospitals or interhospital variability in family and nurse ratings of this care. Recently, relatively high family satisfaction with ICU end-of-life care has prompted speculation that ICU palliative care has improved over time, but temporal trends have not been documented. DESIGN/SETTING: Retrospective cohort study of consecutive patients dying in the ICU in 13 Seattle-Tacoma-area hospitals between 2003 and 2008. MEASUREMENTS: We examined variability over time and among hospitals in satisfaction and quality of dying assessed by family, quality of dying assessed by nurses, and chart-based indicators of palliative care. We used regression analyses adjusting for patient, family, and nurse characteristics. MAIN RESULTS: Medical charts were abstracted for 3,065 of 3,246 eligible patients over a 55-month period. There were significant differences between hospitals for all chart-based indicators (p < 0.001), family satisfaction (p < 0.001), family-rated quality of dying (p = 0.03), and nurse-rated quality of dying (p = 0.003). There were few significant changes in these measures over time, although we found a significant increase in pain assessments in the last 24 hours of life (p < 0.001) as well as decreased documentation of family conferences (p < 0.001) and discussion of prognosis (p = 0.020) in the first 72 hours in the ICU. CONCLUSIONS: We found significant interhospital variation in ratings and delivery of palliative care, consistent with prior studies showing variation in intensity of care at the end of life. We did not find evidence of temporal changes in most aspects of palliative care, family satisfaction, or nurse/family ratings of the quality of dying. With the possible exception of pain assessment, there is little evidence that the quality of palliative care has improved over the time period studied.

Effect of a quality-improvement intervention on end-of-life care in the intensive care unit: a randomized trial.

RATIONALE: Because of high mortality, end-of-life care is an important component of intensive care. OBJECTIVES: We evaluated the effectiveness of a quality-improvement intervention to improve intensive care unit (ICU) end-of-life care. METHODS: We conducted a cluster-randomized trial randomizing 12 hospitals. The intervention targeted clinicians with five components: clinician education, local champions, academic detailing, clinician feedback of quality data, and system supports. Outcomes were assessed for patients dying in the ICU or within 30 hours of ICU discharge using surveys and medical record review. Families completed Quality of Dying and Death (QODD) and satisfaction surveys. Nurses completed the QODD. Data were collected during baseline and follow-up at each hospital (May 2004 to February 2008). We used robust regression models to test for intervention effects, controlling for site, patient, family, and nurse characteristics. MEASUREMENTS AND MAIN RESULTS: All hospitals completed the trial with 2,318 eligible patients and target sample sizes obtained for family and nurse surveys. The primary outcome, family-QODD, showed no change with the intervention (P = 0.33). There was no change in family satisfaction (P = 0.66) or nurse-QODD (P = 0.81). There was a nonsignificant increase in ICU days before death after the intervention (hazard ratio = 0.9; P = 0.07). Among patients undergoing withdrawal of mechanical ventilation, there was no change in time from admission to withdrawal (hazard ratio = 1.0; P = 0.81). CONCLUSIONS: We found this intervention was associated with no improvement in quality of dying and no change in ICU length of stay before death or time from ICU admission to withdrawal of life-sustaining measures. Improving ICU end-of-life care will require interventions with more direct contact with patients and families. Clinical trial registered with www.clinicaltrials.gov (NCT00685893).

Identifying Goals of Care Conversations in the Electronic Health Record Using Natural Language Processing and Machine Learning.

CONTEXT: Goals-of-care discussions are an important quality metric in palliative care. However, goals-of-care discussions are often documented as free text in diverse locations. It is difficult to identify these discussions in the electronic health record (EHR) efficiently. OBJECTIVES: To develop, train, and test an automated approach to identifying goals-of-care discussions in the EHR, using natural language processing (NLP) and machine learning (ML). METHODS: From the electronic health records of an academic health system, we collected a purposive sample of 3183 EHR notes (1435 inpatient notes and 1748 outpatient notes) from 1426 patients with serious illness over 2008-2016, and manually reviewed each note for documentation of goals-of-care discussions. Separately, we developed a program to identify notes containing documentation of goals-of-care discussions using NLP and supervised ML. We estimated the performance characteristics of the NLP/ML program across 100 pairs of randomly partitioned training and test sets. We repeated these methods for inpatient-only and outpatient-only subsets. RESULTS: Of 3183 notes, 689 contained documentation of goals-of-care discussions. The mean sensitivity of the NLP/ML program was 82.3% (SD 3.2%), and the mean specificity was 97.4% (SD 0.7%). NLP/ML results had a median positive likelihood ratio of 32.2 (IQR 27.5-39.2) and a median negative likelihood ratio of 0.18 (IQR 0.16-0.20). Performance was better in inpatient-only samples than outpatient-only samples. CONCLUSION: Using NLP and ML techniques, we developed a novel approach to identifying goals-of-care discussions in the EHR. NLP and ML represent a potential approach toward measuring goals-of-care discussions as a research outcome and quality metric.

Facilitating communication for critically ill patients and their family members: Study protocol for two randomized trials implemented in the U.S. and France.

BACKGROUND: Critically-ill patients and their families suffer a high burden of psychological symptoms due, in part, to many transitions among clinicians and settings during and after critical illness, resulting in fragmented care. Communication facilitators may help. DESIGN AND INTERVENTION: We are conducting two cluster-randomized trials, one in the U.S. and one in France, with the goal of evaluating a nurse facilitator trained to support, model, and teach communication strategies enabling patients and families to secure care consistent with patients' goals, beginning in ICU and continuing for 3 months. PARTICIPANTS: We will randomize 376 critically-ill patients in the US and 400 in France to intervention or usual care. Eligible patients have a risk of hospital mortality of greater than15% or a chronic illness with a median survival of approximately 2 years or less. OUTCOMES: We assess effectiveness with patient- and family-centered outcomes, including symptoms of depression, anxiety, and post-traumatic stress, as well as assessments of goal-concordant care, at 1-, 3-, and 6-months post-randomization. The primary outcome is family symptoms of depression over 6 months. We also evaluate whether the intervention improves value by reducing utilization while improving outcomes. Finally, we use mixed methods to explore implementation factors associated with implementation outcomes (acceptability, fidelity, acceptability, penetration) to inform dissemination. Conducting the trial in U.S. and France will provide insights into differences and similarities between countries. CONCLUSIONS: We describe the design of two randomized trials of a communication facilitator for improving outcomes for critically ill patients and their families in two countries.

Integrating palliative and critical care: evaluation of a quality-improvement intervention.

RATIONALE: Palliative care in the intensive care unit (ICU) is an important focus for quality improvement. OBJECTIVES: To evaluate the effectiveness of a multi-faceted quality improvement intervention to improve palliative care in the ICU. METHODS: We performed a single-hospital, before-after study of a quality-improvement intervention to improve palliative care in the ICU. The intervention consisted of clinician education, local champions, academic detailing, feedback to clinicians, and system support. Consecutive patients who died in the ICU were identified pre- (n = 253) and postintervention (n = 337). Families completed Family Satisfaction in the Intensive Care Unit (FS-ICU) and Quality of Dying and Death (QODD) surveys. Nurses completed the QODD. The QODD and FS-ICU were scored from 0 to 100. We used Mann-Whitney tests to assess family results and hierarchical linear modeling for nurse results. MEASUREMENTS AND MAIN RESULTS: There were 590 patients who died in the ICU or within 24 hours of transfer; 496 had an identified family member. The response rate for family members was 55% (275 of 496) and for nurses, 89% (523/590). The primary outcome, the family QODD, showed a trend toward improvement (pre, 62.3; post, 67.1), but was not statistically significant (P = 0.09). Family satisfaction increased but not significantly. The nurse QODD showed significant improvement (pre, 63.1; post, 67.1; P < 0.01) and there was a significant reduction in ICU days before death (pre, 7.2; post, 5.8; P < 0.01). CONCLUSIONS: We found no significant improvement in family-assessed quality of dying or in family satisfaction with care, we found but significant improvement in nurse-assessed quality of dying and reduction in ICU length of stay with an intervention to integrate palliative care in the ICU. Improving family ratings may require interventions that have more direct contact with family members.

Effect of a Patient and Clinician Communication-Priming Intervention on Patient-Reported Goals-of-Care Discussions Between Patients With Serious Illness and Clinicians: A Randomized Clinical Trial.

Importance: Clinician communication about goals of care is associated with improved patient outcomes and reduced intensity of end-of-life care, but it is unclear whether interventions can improve this communication. Objective: To evaluate the efficacy of a patient-specific preconversation communication-priming intervention (Jumpstart-Tips) targeting both patients and clinicians and designed to increase goals-of-care conversations compared with usual care. Design, Setting, and Participants: Multicenter cluster-randomized trial in outpatient clinics with physicians or nurse practitioners and patients with serious illness. The study was conducted between 2012 and 2016. Interventions: Clinicians were randomized to the bilateral, preconversation, communication-priming intervention (n = 65) or usual care (n = 67), with 249 patients assigned to the intervention and 288 to usual care. Main Outcomes and Measures: The primary outcome was patient-reported occurrence of a goals-of-care conversation during a target outpatient visit. Secondary outcomes included clinician documentation of a goals-of-care conversation in the medical record and patient-reported quality of communication (Quality of Communication questionnaire [QOC]; 4-indicator latent construct) at 2 weeks, as well as patient assessments of goal-concordant care at 3 months and patient-reported symptoms of depression (8-item Patient Health Questionnaire; PHQ-8) and anxiety (7-item Generalized Anxiety Disorder survey; GAD-7) at 3 and 6 months. Analyses were clustered by clinician and adjusted for confounders. Results: We enrolled 132 of 485 potentially eligible clinicians (27% participation; 71 women [53.8%]; mean [SD] age, 47.1 [9.6] years) and 537 of 917 eligible patients (59% participation; 256 women [47.7%]; mean [SD] age, 73.4 [12.7] years). The intervention was associated with a significant increase in a goals-of-care discussion at the target visit (74% vs 31%; P < .001) and increased medical record documentation (62% vs 17%; P < .001), as well as increased patient-rated quality of communication (4.6 vs 2.1; P = .01). Patient-assessed goal-concordant care did not increase significantly overall (70% vs 57%; P = .08) but did increase for patients with stable goals between 3-month follow-up and last prior assessment (73% vs 57%; P = .03). Symptoms of depression or anxiety were not different between groups at 3 or 6 months. Conclusions and Relevance: This intervention increased the occurrence, documentation, and quality of goals-of-care communication during routine outpatient visits and increased goal-concordant care at 3 months among patients with stable goals, with no change in symptoms of anxiety or depression. Understanding the effect on subsequent health care delivery will require additional study. Trial Registration: ClinicalTrials.gov identifier: NCT01933789.

Using Nurse Ratings of Physician Communication in the ICU To Identify Potential Targets for Interventions To Improve End-of-Life Care.

BACKGROUND: Communication among doctors, nurses, and families contributes to high-quality end-of-life care, but is difficult to improve. OBJECTIVE: Our objective was to identify aspects of communication appropriate for interventions to improve quality of dying in the intensive care unit (ICU). METHODS: This observational study used data from a cluster-randomized trial of an interdisciplinary intervention to improve end-of-life care at 15 Seattle/Tacoma area hospitals (2003-2008). Nurses completed surveys for patients dying in the ICU. We examined associations between nurse-assessed predictors (physician-nurse communication, physician-family communication) and nurse ratings of patients' quality of dying (nurse-QODD-1). RESULTS: Based on 1173 nurse surveys, four of six physician-nurse communication topics were positively associated with nurse-QODD-1: family questions, family dynamics, spiritual/religious issues, and cultural issues. Discussions between nurses and physicians about nurses' concerns for patients or families were negatively associated. All physician-family communication ratings, as assessed by nurses, were positively associated with nurse-QODD-1: answering family's questions, listening to family, asking about treatments patient would want, helping family decide patient's treatment wishes, and overall communication. Path analysis suggested overall physician-family communication and helping family incorporate patient's wishes were directly associated with nurse-QODD-1. CONCLUSIONS: Several topics of physician-nurse communication, as rated by nurses, were associated with higher nurse-rated quality of dying, whereas one topic, nurses' concerns for patient or family, was associated with poorer ratings. Higher nurse ratings of physician-family communication were uniformly associated with higher quality of dying, highlighting the importance of this communication. Physician support of family decision making was particularly important, suggesting a potential target for interventions to improve end-of-life care.

Factors Affecting Patients' Preferences for and Actual Discussions About End-of-Life Care.

CONTEXT: Discussions about end-of-life care are often difficult for patients and clinicians, and inadequate communication poses a barrier to patients receiving the care they desire. OBJECTIVES: To understand factors that facilitate end-of-life care discussions that guide interventions to improve care. METHODS: We examined baseline data from an ongoing randomized trial to evaluate associations between patients' self-reported desire for, and occurrence of, discussions about end-of-life care and factors influencing these discussions. Factors included emotional symptoms and barriers and facilitators to discussions. The sample included patients with serious illness (n = 473) and their primary or specialty care clinicians (n = 128). Regression analyses were adjusted for confounders and clustered patients under clinicians. RESULTS: Patients who endorsed each of three barriers to discussions were less likely to have had a discussion with their clinician (P-values ranging from <0.001 to 0.046). One facilitator (having had family/friends who died) was associated with past discussions (P = 0.037), and two facilitators were associated with wanting future discussion (P < 0.001): 1) concerns about future quality of life, 2) worries about being a burden on friends/family. Depression and anxiety were not associated with past discussions. However, patients with more anxiety were more likely to want future discussions (P = 0.001), as were patients with more depressive symptoms who had had discussions in the past (P < 0.001). CONCLUSION: The occurrence of, and desire for, patient-clinician communication about end-of-life care is associated with patient factors including communication barriers and facilitators and symptoms of depression and anxiety. Understanding these factors may facilitate design of effective communication interventions.

Communication about end-of-life care between language-discordant patients and clinicians: insights from medical interpreters.

BACKGROUND: Communication about health care and especially end-of-life care is difficult for clinicians and patients when they do not speak the same language. Our purpose was to improve understanding of how to approach discussions between language-discordant patients and clinicians about terminal or life-threatening illness. METHODS: We conducted a qualitative study with 4 focus groups with 43 professional medical interpreters. We asked open-ended questions concerning physician and interpreter communication about end-of-life care. Focus groups were audiotaped, transcribed, and analyzed using principles of grounded theory. Results were presented to an additional 3 focus groups with 25 medical interpreters to ensure that analyses represented interpreters' perspectives. RESULTS: We developed 3 frameworks for understanding high-quality language-discordant communication about end-of-life care. The first framework addresses physician and interpreter professionalism, including humanistic qualities and emotional support capabilities important for high quality care. The second framework is physician-centered and highlights communication skills, as well as coordination with other providers and cultural sensitivity. The third framework is interpreter-centered, focusing on role conflicts, including struggles concerning expectations to provide strict interpretation versus being a cultural broker. Interpreters' recommendations for improving quality of this care include pre-meetings with interpreters before encounters involving delivery of bad news and explicit discussions with interpreters about whether the clinician expects strict interpretation or cultural brokering. CONCLUSIONS: These results provide insights for physicians about how to improve end-of-life discussions with language-discordant patients and their families. Interpreter recommendations provide physicians and health care organizations with specific tools that may improve quality of communication about end-of-life discussions.

Time to Death after Terminal Withdrawal of Mechanical Ventilation: Specific Respiratory and Physiologic Parameters May Inform Physician Predictions.

BACKGROUND: Discussions about withdrawal of life-sustaining therapies often include family members of critically ill patients. These conversations should address essential components of the dying process, including expected time to death after withdrawal. OBJECTIVES: The study objective was to aid physician communication about the dying process by identifying predictors of time to death after terminal withdrawal of mechanical ventilation. METHODS: We conducted an observational analysis from a single-center, before-after evaluation of an intervention to improve palliative care. We studied 330 patients who died after terminal withdrawal of mechanical ventilation. Predictors included patient demographics, laboratory, respiratory, and physiologic variables, and medication use. RESULTS: The median time to death for the entire cohort was 0.58 hours (interquartile range (IQR) 0.22-2.25 hours) after withdrawal of mechanical ventilation. Using Cox regression, independent predictors of shorter time to death included higher positive end-expiratory pressure (per 1 cm H2O hazard ratio [HR], 1.07; 95% CI 1.04-1.11); higher static pressure (per 1 cm H2O HR, 1.03; 95% CI 1.01-1.04); extubation prior to death (HR, 1.41; 95% CI 1.06-1.86); and presence of diabetes (HR, 1.75; 95% CI 1.25-2.44). Higher noninvasive mean arterial pressure predicted longer time to death (per 1 mmHg HR, 0.98; 95% CI 0.97-0.99). CONCLUSIONS: Comorbid illness and key respiratory and physiologic parameters may inform physician predictions of time to death after withdrawal of mechanical ventilation. An understanding of the predictors of time to death may facilitate discussions with family members of dying patients and improve communication about end-of-life care.

Narcotic and benzodiazepine use after withdrawal of life support: association with time to death?

OBJECTIVE: To determine whether the dose of narcotics and benzodiazepines is associated with length of time from mechanical ventilation withdrawal to death in the setting of withdrawal of life-sustaining treatment in the ICU. DESIGN: Retrospective chart review. SETTING: University-affiliated, level I trauma center. PATIENTS: Consecutive critically ill patients who had mechanical ventilation withdrawn and subsequently died in the ICU during two study time periods. RESULTS: There were 75 eligible patients with a mean age of 59 years. The primary ICU admission diagnoses included intracranial hemorrhage (37%), trauma (27%), acute respiratory failure (27%), and acute renal failure (20%). Patients died during a median of 35 min (range, 1 to 890 min) after ventilator withdrawal. On average, 16.2 mg/h opiates in morphine equivalents and 7.5 mg/h benzodiazepine in lorazepam equivalents were administered during the time period starting 1 h before ventilator withdrawal and ending at death. There was no statistically significant relationship between the average hourly narcotic and benzodiazepine use during the 1-h period prior to ventilator withdrawal until death, and the time from ventilator withdrawal to death. The restriction of medication assessment in the last 2 h of life showed an inverse association between the use of benzodiazepines and time to death. For every 1 mg/h increase in benzodiazepine use, time to death was increased by 13 min (p = 0.015). There was no relationship between narcotic dose and time to death during the last 2 h of life (p = 0.11). CONCLUSIONS: We found no evidence that the use of narcotics or benzodiazepines to treat discomfort after the withdrawal of life support hastens death in critically ill patients at our center. Clinicians should strive to control patient symptoms in this setting and should document the rationale for escalating drug doses.

Studying communication about end-of-life care during the ICU family conference: development of a framework.

PURPOSE: Family-clinician communication in the intensive care unit (ICU) about withholding and withdrawing life support occurs frequently, yet few data exist to guide clinicians in its conduct. The purpose of this study was to develop an understanding of the way this communication is currently conducted. METHODS: We identified family conferences in the ICUs of 4 Seattle-area hospitals. Conferences were eligible if the physician leading the conference believed that discussion about withholding or withdrawing life support or the delivery of bad news was likely to occur and if all conference participants consented to participate. Fifty conferences were audiotaped, transcribed, and analyzed by using the principles of grounded theory. RESULTS: We developed 2 frameworks for describing and understanding this communication. The first framework describes communication content, including introductions, information exchange, discussions of the future, and closings. The second framework describes communication styles and support provided to families and other clinicians and includes a variety of techniques such as active listening, acknowledging informational complexity and emotional difficulty of the situation, and supporting family decision making. These frameworks identify what physicians discuss, how they present and respond to issues, and how they support families during these conferences. CONCLUSIONS: This article describes a qualitative methodology to understand clinician-family communication during the ICU family conference concerning end-of-life care and provides a frame of reference that may help guide clinicians who conduct these conferences. We also identify strategies clinicians use to improve communication and enhance the support provided. Further analyses and studies are needed to identify whether this framework or these strategies can improve family understanding or satisfaction or improve the quality care in the ICU.

Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU.

The intensive care unit (ICU), where death is common and even survivors of an ICU stay face the risk of long-term morbidity and re-admissions to the ICU, represents an important setting for improving communication about palliative and end-of-life care. Communication about the goals of care in this setting should be a high priority since studies suggest that the current quality of ICU communication is often poor and is associated with psychological distress among family members of critically ill patients. This paper describes the development and evaluation of an intervention designed to improve the quality of care in the ICU by improving communication among the ICU team and with family members of critically ill patients. We developed a multi-faceted, interprofessional intervention based on self-efficacy theory. The intervention involves a "communication facilitator" - a nurse or social worker - trained to facilitate communication among the interprofessional ICU team and with the critically ill patient's family. The facilitators are trained using three specific content areas: a) evidence-based approaches to improving clinician-family communication in the ICU, b) attachment theory allowing clinicians to adapt communication to meet individual family member's communication needs, and c) mediation to facilitate identification and resolution of conflict including clinician-family, clinician-clinician, and intra-family conflict. The outcomes assessed in this randomized trial focus on psychological distress among family members including anxiety, depression, and post-traumatic stress disorder at 3 and 6 months after the ICU stay. This manuscript also reports some of the lessons that we have learned early in this study.

The influence of race/ethnicity and socioeconomic status on end-of-life care in the ICU.

BACKGROUND: There is conflicting evidence about the influence of race/ethnicity on the use of intensive care at the end of life, and little is known about the influence of socioeconomic status. METHODS: We examined patients who died in the ICU in 15 hospitals. Race/ethnicity was assessed as white and nonwhite. Socioeconomic status included patient education, health insurance, and income by zip code. To explore differences in end-of-life care, we examined the use of (1) advance directives, (2) life-sustaining therapies, (3) symptom management, (4) communication, and (5) support services. RESULTS: Medical charts were abstracted for 3,138/3,400 patients of whom 2,479 (79%) were white and 659 (21%) were nonwhite (or Hispanic). In logistic regressions adjusted for patient demographics, socioeconomic factors, and site, nonwhite patients were less likely to have living wills (OR, 0.41; 95% CI, 0.32-0.54) and more likely to die with full support (OR, 1.59; 95% CI, 1.30-1.94). In documentation of family conferences, nonwhite patients were more likely to have documentation that prognosis was discussed (OR, 1.47; 95% CI, 1.21-1.77) and that physicians recommended withdrawal of life support (OR, 1.57; 95% CI, 1.11-2.21). Nonwhite patients also were more likely to have discord documented among family members or with clinicians (OR, 1.49; 95% CI, 1.04-2.15). Socioeconomic status did not modify these associations and was not a consistent predictor of end-of-life care. CONCLUSIONS: We found numerous racial/ethnic differences in end-of-life care in the ICU that were not influenced by socioeconomic status. These differences could be due to treatment preferences, disparities, or both. Improving ICU end-of-life care for all patients and families will require a better understanding of these issues. TRIAL REGISTRY: ClinicalTrials.gov; No.: NCT00685893; URL: www.clinicaltrials.gov.

Communication in the intensive care unit about the end of life.

Communicating well in the intensive care unit is essential to providing quality critical care for the families of patients who are expected to die. There are many examples in the literature of how clinicians fall short of meeting these needs of families. There is also a developing body of literature describing approaches and tools that may have a positive impact on the perceived quality of end-of-life communication. The quality of clinician communication can be improved just as other skills that are important in the intensive care unit.

Integrating palliative and critical care: description of an intervention.

A large proportion of deaths in the United States occur in the intensive care unit (ICU) or after a stay in the ICU, and there is evidence of problems in the quality of care these patients and their families receive. In an effort to respond to this problem, we developed a multifaceted, nurse-focused, quality improvement intervention that is based on self-efficacy theory applied to changing clinician behavior. We have called the intervention "Integrating Palliative and Critical Care." This five-component intervention includes: 1) critical care clinician education to increase knowledge and awareness of the principles and practice of palliative care in the ICU, 2) critical care clinician local champions to provide role modeling and promote attitudinal change concerning end-of-life care, 3) academic detailing of nurse and physician ICU directors to identify and address local barriers to improving end-of-life care in each ICU, 4) feedback of local quality improvement data, and 5) system supports including implementation of palliative care order forms, family information pamphlets, and other system supports for providing palliative care in the ICU. The goal of this report is to describe the conceptual model that led to the development of the intervention, and for each of the five components, we describe the theoretical and empirical support for each component, the content of the component, and the lessons we have learned in implementing the component. Future reports will need to examine the ability of the interventions to improve outcomes of palliative care in the ICU.

Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup.

For critically ill patients and their loved ones, high-quality health care includes the provision of excellent palliative care. To achieve this goal, the healthcare system needs to identify, measure, and report specific targets for quality palliative care for critically ill or injured patients. Our objective was to use a consensus process to develop a preliminary set of quality measures to assess palliative care in the critically ill. We built on earlier and ongoing efforts of the Robert Wood Johnson Foundation Critical Care End-of-Life Peer Workgroup to propose specific measures of the structure and process of palliative care. We used an informal iterative consensus process to identify and refine a set of candidate quality measures. These candidate measures were developed by reviewing previous literature reviews, supplementing the evidence base with recently published systematic reviews and consensus statements, identifying existing indicators and measures, and adapting indicators from related fields for our objective. Among our primary sources, we identified existing measures from the Voluntary Hospital Association's Transformation of the ICU program and a government-sponsored systematic review performed by RAND Health to identify palliative care quality measures for cancer care. Our consensus group proposes 18 quality measures to assess the quality of palliative care for the critically ill and injured. A total of 14 of the proposed measures assess processes of care at the patient level, and four measures explore structural aspects of critical care delivery. Future research is needed to assess the relationship of these measures to desired health outcomes. Subsequent measure sets should also attempt to include outcome measures, such as patient or surrogate satisfaction, as the field develops the means to rigorously measure such outcomes. The proposed measures are intended to stimulate further discussion, testing, and refinement for quality of care measurement and enhancement.

Missed opportunities during family conferences about end-of-life care in the intensive care unit.

BACKGROUND: Improved communication with family members of critically ill patients can decrease the prolongation of dying in the intensive care unit (ICU), but few data exist to guide the conduct of this communication. OBJECTIVE: Our objective was to identify missed opportunities for physicians to provide support for or information to family during family conferences. METHODS: We identified ICU family conferences in four hospitals that included discussions about withdrawing life support or delivery of bad news. Fifty-one conferences were audiotaped, including 214 family members. Thirty-six physicians led the conferences and some physicians led more than one. We used qualitative methods to identify and categorize missed opportunities, defined as an occurrence when the physician had an opportunity to provide support or information to the family and did not. MAIN RESULTS: Fifteen family conferences (29%) had missed opportunities identified. These fell into three categories: opportunities to listen and respond to family; opportunities to acknowledge and address emotions; and opportunities to pursue key principles of medical ethics and palliative care, including exploration of patient preferences, explanation of surrogate decision making, and affirmation of nonabandonment. The most commonly missed opportunities were those to listen and respond, but examples from other categories suggest value in being aware of these opportunities. CONCLUSIONS: Identification of missed opportunities during ICU family conferences provides suggestions for improving communication during these conferences. Future studies are needed to demonstrate whether addressing these opportunities will improve quality of care.

Factors associated with nurse assessment of the quality of dying and death in the intensive care unit.

OBJECTIVE: To determine the feasibility of using nurse ratings of quality of dying and death to assess quality of end-of-life care in the intensive care unit and to determine factors associated with nurse assessment of the quality of dying and death for patients dying in the intensive care unit. DESIGN: Prospective cohort study. SETTING: Hospital intensive care unit. PATIENTS: 178 patients who died in an intensive care unit during a 10-month period at one hospital. INTERVENTIONS: Nurses completed a 14-item questionnaire measuring the quality of dying and death in the intensive care unit (QODD); standardized chart reviews were also completed. MEASUREMENTS AND MAIN RESULTS: Five variables were found to be associated with QODD scores. Higher (better) scores were significantly associated with having someone present at the time of death (p <.001), having life support withdrawn (p =.006), having an acute diagnosis such as intracranial hemorrhage or trauma (p =.007), not having cardiopulmonary resuscitation in the last 8 hrs of life (p <.001), and being cared for by the neurosurgery or neurology services (p =.002). Patient age, chronic disease, and Glasgow Coma Scale scores were not associated with the 14-item QODD. Using multivariate analyses, we identified three variables as independent predictors of the QODD score: a) not having cardiopulmonary resuscitation performed in the last 8 hrs of life; b) having someone present at the moment of death; and c) being cared for by neurosurgery or neurology services. CONCLUSIONS: Intensive care unit nurse assessment of quality of dying and death is a feasible method for obtaining quality ratings. Based on nurse assessments, this study provides evidence of some potential targets for interventions to improve the quality of dying for some patients: having someone present at the moment of death and not having cardiopulmonary resuscitation in the last 8 hrs of life. If nurse-assessed quality of dying is to be a useful tool for measuring and improving quality of end-of-life care, it is important to understand the factors associated with nurse ratings.