Objectives: Families of patients admitted to ICUs experience numerous care transitions, poor communication across these transitions, and emotional distress associated, in part, with the challenges of obtaining care consistent with patients’ values. Specialized support from ICU to postacute setting may improve outcomes. Design: Multicenter randomized, controlled trial of a “communication facilitator” intervention. Setting: One healthcare system, three hospitals in Seattle, WA. Participants: ICU patients ( n = 449) with chronic life-limiting illness (2-yr median survival, and/or acute, severe illness with greater than 15% hospital mortality risk) and their family members ( n = 505). Patients were the unit of randomization (control, n = 224; intervention, n = 225). Interventions: Nurse communication facilitators trained to support, model, and teach communication strategies to promote goal-concordant care. Facilitators engaged with participants in the ICU and for 3 months postrandomization. Measurement and Main Results: The primary outcome was family member depression, measured using the Hospital Anxiety and Depression Scale (HADS) at four time points (randomization, 1-, 3-, and 6-mo postrandomization). Among respondents, HADS-depression tended to decrease over time (mean ± sd = 7.2 ± 4.6 for control and 7.2 ± 4.2 for intervention at baseline; 5.9 ± 4.1 for control and 5.9 ± 4.5 for intervention at 6 mo). The difference in mean HADS-depression between intervention and control over 6 mo was not significantly different: −0.07 (95% CI, −0.70 to 0.55). Differences in family-reported secondary outcomes were in the expected direction, including relationship with the healthcare team ( p = 0.0162) and goal concordance ( p = 0.0504), but their effect sizes were small. Conclusions: For family members of critically ill patients facing a high likelihood of death or serious disability, involving a communication facilitator during and after an ICU stay did not lead to a reduction in depressive symptoms.

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.

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.

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

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. (C) 2016 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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.

RATIONALECommunication with family of critically ill patients is often poor and associated with family distress.OBJECTIVESTo determine if an intensive care unit (ICU) communication facilitator reduces family distress and intensity of end-of-life care.METHODSWe 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 RESULTSOutcomes 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).CONCLUSIONSCommunication 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).

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.

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.

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 6months after the ICU stay. This manuscript also reports some of the lessons that we have learned early in this study.

RATIONALEPalliative care in the intensive care unit (ICU) is an important focus for quality improvement.OBJECTIVESTo evaluate the effectiveness of a multi-faceted quality improvement intervention to improve palliative care in the ICU.METHODSWe 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 RESULTSThere 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).CONCLUSIONSWe 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.

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.

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.

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.

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.