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Interventions to promote serious illness conversations have shown promise in promoting high-quality care. However, in randomized trials, some participants may benefit more from the intervention than others.To examine heterogeneity of treatment effect and identify subgroups of patients with serious illness who might benefit most from interventions to enhance communication about goals of care.We used data from a multi-center cluster-randomized trial evaluating a communication intervention to increase goals-of-care discussions in the outpatient setting. Patients (n = 249 intervention, n = 288 usual care) had serious illness with an expected median survival of two years. Using model-based recursive partitioning, we tested heterogeneity of the intervention's effect on the occurrence of patient-reported goals-of-care discussions, electronic health record documentation of goals-of-care discussions, patients' ratings of quality of communication, and patients' symptoms of psychological distress at three and six months.We found two significant interactions. For patients' overall rating of clinician communication (n = 251), the intervention effect was positive for patients with higher household income, but not those with lower income (P0.001). For patients' symptoms of depression at six months (n = 288), the intervention was associated with fewer symptoms of depression among those whose self-assessed health was poor, but not among those with fair to excellent health (P0.001).Identifying heterogeneity of treatment effect can be a valuable exercise following completion of a randomized trial. Interactions between the intervention and patient income and self-assessed health suggest these factors could be used to design more effective interventions to enhance communication about goals of care.

The COVID-19 pandemic poses risk for worsened quality of life in patients with adult congenital heart disease. In a qualitative thematic analysis of semi-structured interviews conducted July 2020 to August 2021, we examined the pandemic’s impact on participants’ (N = 25) experiences with self-perception and coping. All had moderate or complex disease; median age 32 years. The pandemic altered some participants’ self-perception, including increased vulnerability beyond heart-attributed risk. Restrictions frequently prevented participants from using their usual coping strategies, forcing use of alternative methods. For an already at-risk population, these findings suggest the need for increased mental health awareness, assessment, and support.

Context Goal-concordant care is an important indicator of high-quality care in serious illness. Objectives To estimate the prevalence of patient-reported receipt of goal-concordant care among seriously ill outpatients and identify factors associated with the absence of patient-reported goal concordance. Methods Analysis of enrollment surveys from a multicenter cluster-randomized trial of outpatients with serious illness. Patients reported their prioritized health care goal and the focus of their current medical care; these items were matched to define receipt of goal-concordant care. Results Of 405 patients with a prioritized health care goal, 58% reported receipt of goal-concordant care, 17% goal-discordant care, and 25% were uncertain of the focus of their care. Patient-reported receipt of goal concordance differed by patient goal. For patients who prioritized extending life, 86% reported goal-concordant care, 2% goal-discordant care, and 12% were uncertain of the focus of their care. For patients who prioritized relief of pain and discomfort, 51% reported goal-concordant care, 21% goal-discordant care, and 28% were uncertain of the focus of their care. Patients who prioritized a goal of relief of pain and discomfort were more likely to report goal-discordant care than patients who prioritized a goal of extending life (relative risk ratio 22.20; 95% CI 4.59, 107.38). Conclusion Seriously ill outpatients who prioritize a goal of relief of pain and discomfort are less likely to report receipt of goal-concordant care than patients who prioritize extending life. Future interventions designed to improve receipt of goal-concordant care should focus on identifying patients who prioritize relief of pain and discomfort and promoting care aligned with that goal.

Background Transfers to the ICU from acute care are common, and it is essential to understand how family members of critically ill patients experience these transitions of care. Research Question Can we enhance our understanding of family members’ experiences during hospital stays complicated by a patient’s unplanned admission to the ICU? Study Design and Methods Qualitative interviews were conducted with family members of patients were transferred from acute care to the ICU at a level I trauma center in Seattle, WA (n = 17). To organize data, we used thematic analysis, coupled with a validated conceptual model of clinician-surrogate communication. Results Drawing from a validated conceptual model, we used two domains to frame our coding: “information processing” and “relationship building.” Within information processing, we coded information disclosure, sensemaking, and expectations; within relationship building, we coded emotional support, trust, and consensus and conflict. Family members wanted timely, accurate information about the patient’s condition both during and after transfer. An unplanned ICU admission was a stressful event for family members, who looked to clinicians for emotional support. Developing trust was challenging, because family members struggled to feel like integrated members of the medical team when patients transitioned from one setting to another. Interpretation Family of patients who experience an unplanned ICU admission want high-quality communication both during and after a patient’s transfer to the ICU. This communication should help family members make sense of the situation, address unmet expectations, and provide emotional support. In addition, interventions that foster family-clinician trust can help family members feel like integrated members of the care team as they face the challenge of navigating multiple different environments within the hospital.

Context Hospice care focuses on improving the quality of end-of-life care and respecting patients’ preferences regarding end-of-life treatment. The impact of coronavirus disease 2019 (COVID-19) on the utilization of hospice services is unknown. Objectives To investigate the utilization of hospice care services before and during the COVID-19 pandemic. Methods All patients (n = 19,900) cared for at Taipei City Hospital from January 2019 to April 2020 were divided into three time points: January–April 2019 (before COVID-19), May–December 2019 (interim), and January–April 2020 (during COVID-19). This cohort study compared the monthly utilization of hospice services before and during the COVID-19 pandemic. Results There was no significant difference in hospice home visits (194 vs. 184; P = 0.686) and new enrollments (15 vs. 14; P = 0.743) to hospice home care before and during the pandemic. However, the bed occupancy rate in hospice units in the hospital was significantly reduced from 66.2% before the pandemic to 37.4% during the pandemic (P = 0.029), whereas that in nonhospice units had a nonsignificant decrease from 81.6% before the pandemic to 71.8% during the pandemic (P = 0.086). During the pandemic, the number of inpatient days was affected more severely in hospice units than in nonhospice units (−42.4% vs. −10.9%; P = 0.029). Conclusions This study suggests that hospice home care services were maintained during the COVID-19 pandemic, while the utilization of hospice inpatient care services reduced. Home care for hospice patients is an essential component of palliative care during a pandemic.

Context The coronavirus disease 2019 (COVID-19) pandemic is stressing health care systems throughout the world. Significant numbers of patients are being admitted to the hospital with severe illness, often in the setting of advanced age and underlying comorbidities. Therefore, palliative care is an important part of the response to this pandemic. The Seattle area and UW Medicine have been on the forefront of the pandemic in the U.S. Methods UW Medicine developed a strategy to implement a palliative care response for a multihospital health care system that incorporates conventional capacity, contingency capacity, and crisis capacity. The strategy was developed by our palliative care programs with input from the health care system leadership. Results In this publication, we share our multifaceted strategy to implement high-quality palliative care in the context of the COVID-19 pandemic that incorporates conventional, contingency, and crisis capacity and focuses on the areas of the hospital caring for the most patients: the emergency department, intensive care units, and acute care services. The strategy focuses on key content areas, including identifying and addressing goals of care, addressing moderate and severe symptoms, and supporting family members. Conclusion Strategy planning for delivery of high-quality palliative care in the context of the COVID-19 pandemic represents an important area of need for our health care systems. We share our experiences of developing such a strategy to help other institutions conduct and adapt such strategies more quickly.

Objectives:To assess the feasibility and efficacy of implementing “Family Care Rituals” as a means of engaging family members in the care of patients admitted to the ICU with a high risk of ICU mortality on outcomes including stress-related symptoms in family members.Design:Prospective, before-and-a

Purpose To examine heterogeneity of quality-of-care ratings within families and to examine possible predictors of concordance. Materials and methods We examined two aspects of agreement within families: response similarity and the amount of exact concordance in responses in a cohort of Danish ICU family members participating in a questionnaire survey (the European Quality Questionnaire: euroQ2). Results Two hundred seventy-four family respondents representing 122 patients were included in the study. Identical ratings between family members occurred in 28%–59% of families, depending upon the specific survey item. In a smaller sample of 28 families whose patients died, between 39% and 86% gave identical responses to items rating end-of-life care. There was more response variance within than between families, yielding low estimates of intrafamily correlation. Statistics correcting for chance agreement also suggested modest within-family agreement. Conclusions The finding that variance is higher within than between families suggests the value of including multiple participants within a family in order to capture varying points of view.

Observational data during the pandemic have demonstrated mixed associations between frailty and mortality.To examine associations between frailty and short-term mortality in patients hospitalised with coronavirus disease 2019 (COVID-19).In this systematic review and meta-analysis, we searched PubMed, Embase and the COVID-19 living systematic review from 1 December 2019 to 15 July 2021. Studies reporting mortality and frailty scores in hospitalised patients with COVID-19 (age ≥18 years) were included. Data on patient demographics, short-term mortality (in hospital or within 30 days), intensive care unit (ICU) admission and need for invasive mechanical ventilation (IMV) were extracted. The quality of studies was assessed using the Newcastle-Ottawa Scale.Twenty-five studies reporting 34 628 patients were included. Overall, 26.2% (n = 9061) died. Patients who died were older (76.7 ± 9.6 vs 69.2 ± 13.4), more likely male (risk ratio (RR) = 1.08; 95% confidence interval (CI): 1.06-1.11) and had more comorbidities. Fifty-eight percent of patients were frail. Adjusting for age, there was no difference in short-term mortality between frail and non-frail patients (RR = 1.04; 95% CI: 0.84-1.28). The non-frail patients were commonly admitted to ICU (27.2% (4256/15639) vs 29.1% (3567/12274); P = 0.011) and had a higher mortality risk (RR = 1.63; 95% CI: 1.30-2.03) than frail patients. Among patients receiving IMV, there was no difference in mortality between frail and non-frail (RR = 1.62; 95% CI 0.93-2.77).This systematic review did not demonstrate an independent association between frailty status and short-term mortality in patients with COVID-19. Patients with frailty were less commonly admitted to ICU and non-frail patients were more likely to receive IMV and had higher mortality risk. This finding may be related to allocation decisions for patients with frailty amidst the pandemic.

Supplemental Digital Content is available in the text., OBJECTIVES: Frailty is often used in clinical decision-making for patients with coronavirus disease 2019, yet studies have found a variable influence of frailty on outcomes in those admitted to the ICU. In this individual patient data meta-analysis, we evaluated the characteristics and outcomes across the range of frailty in patients admitted to ICU with coronavirus disease 2019. DATA SOURCES: We contacted the corresponding authors of 16 eligible studies published between December 1, 2019, and February 28, 2021, reporting on patients with confirmed coronavirus disease 2019 admitted to ICU with a documented Clinical Frailty Scale. STUDY SELECTION: Individual patient data were obtained from seven studies with documented Clinical Frailty Scale were included. We classified patients as nonfrail (Clinical Frailty Scale = 1–4) or frail (Clinical Frailty Scale = 5–8). DATA EXTRACTION: We collected patient demographics, Clinical Frailty Scale score, ICU organ supports, and clinically relevant outcomes (ICU and hospital mortality, ICU and hospital length of stays, and discharge destination). The primary outcome was hospital mortality. DATA SYNTHESIS: Of the 2,001 patients admitted to ICU, 388 (19.4%) were frail. Increasing age and Sequential Organ Failure Assessment score, Clinical Frailty Scale score greater than or equal to 4, use of mechanical ventilation, vasopressors, renal replacement therapy, and hyperlactatemia were risk factors for death in a multivariable analysis. Hospital mortality was higher in patients with frailty (65.2% vs 41.8%; p < 0.001), with adjusted mortality increasing with a rising Clinical Frailty Scale score beyond 3. Younger and nonfrail patients were more likely to receive mechanical ventilation. Patients with frailty spent less time on mechanical ventilation (median days [interquartile range], 9 [5–16] vs 11 d [6–18 d]; p = 0.012) and accounted for only 12.3% of total ICU bed days. CONCLUSIONS: Patients with frailty with coronavirus disease 2019 were commonly admitted to ICU and had greater hospital mortality but spent relatively fewer days in ICU when compared with nonfrail patients. Patients with frailty receiving mechanical ventilation were at greater risk of death than patients without frailty.

Background and objectives High-flow nasal cannula (HFNC) oxygen may provide tailored benefits in patients with preset treatment limitations. The objective of this study was to assess the effectiveness of HFNC oxygen in patients with do-not-intubate (DNI) and/or do-not-resuscitate (DNR) orders. Methods We conducted a systematic review of interventional and observational studies. A search was performed using MEDLINE, EMBASE, CINAHL, Scopus, and Web of Science, from inception to October 15, 2018. Results We included six studies evaluating 293 patients. All studies had a high risk of bias. The hospital mortality rates of patients with DNI and/or DNR orders receiving HFNC oxygen were variable and ranged from 40% to 87%. In two before and after studies, the initiation of HFNC oxygen was associated with improved oxygenation and reduced respiratory rates. One comparative study found no difference in dyspnea reduction or morphine doses between patients using HFNC oxygen versus conventional oxygen. No studies evaluated quality of life in survivors or quality of death in nonsurvivors. HFNC was generally well tolerated with few adverse events identified. Conclusions While HFNC oxygen remains a viable treatment option for hospitalized patients who have acute respiratory failure and a DNI and/or DNR order, there is a paucity of high-quality, comparative, effectiveness data to guide the usage of HFNC oxygen compared with other treatments, such as noninvasive ventilation, conventional oxygen, and palliative opioids.

Key Points Question For patients with severe acute brain injury, how prevalent is prognosis discordance between physicians and families, and what factors are associated with it? Findings In this cross-sectional study of 193 patients with severe acute brain injury, prognosis discordance occurred for 61% of patients, with both misunderstanding and belief differences present; prognosis discordance was more likely for family members who were part of minoritized racial groups. Nurses seemed to accurately predict poor family understanding, whereas physicians perceived belief differences as poor family understanding. Meaning The results of this cross-sectional study suggest that prognosis discordance, which may hamper the shared decision-making process, is common between families and physicians for patients with severe acute brain injury., This cross-sectional study uses data from a single neuroscience center to assess for the presence of discordance between physicians and family members regarding prognosis in patients with severe acute brain injury., Importance Shared decision-making requires key stakeholders to align in perceptions of prognosis and likely treatment outcomes. Objective For patients with severe acute brain injury, the objective of this study was to better understand prognosis discordance between physicians and families by determining prevalence and associated factors. Design, Setting, and Participants This mixed-methods cross-sectional study analyzed a cohort collected from January 4, 2018, to July 22, 2020. This study was conducted in the medical and cardiac intensive care units of a single neuroscience center. Participants included families, physicians, and nurses of patients admitted with severe acute brain injury. Exposures Severe acute brain injury was defined as stroke, traumatic brain injury, or hypoxic ischemic encephalopathy with a Glasgow Coma Scale score less than or equal to 12 points after hospital day 2. Main Outcomes and Measures Prognosis discordance was defined as a 20% or greater difference between family and physician prognosis predictions; misunderstanding was defined as a 20% or greater difference between physician prediction and the family’s estimate of physician prediction; and optimistic belief difference was defined as any difference (>0%) between family prediction and their estimate of physician prediction. Logistic regression was used to identify associations with discordance. Optimistic belief differences were analyzed as a subgroup of prognosis discordance. Results Among 222 enrolled patients, prognostic predictions were available for 193 patients (mean [SD] age, 57 [19] years; 106 men [55%]). Prognosis discordance occurred for 118 patients (61%) and was significantly more common among families who identified with minoritized racial groups compared with White families (odds ratio [OR], 3.14; CI, 1.40-7.07, P = .006); among siblings (OR, 4.93; 95% CI, 1.35-17.93, P = .02) and adult children (OR, 2.43; 95% CI, 1.10-5.37; P = .03) compared with spouses; and when nurses perceived family understanding as poor compared with good (OR, 3.73; 95% CI, 1.88-7.40; P

Purpose: Frailty is often used in clinical decision-making for patients with COVID-19, yet studies have found variable influence of frailty on outcomes in those admitted to the intensive care unit (ICU). In this individual patient data meta-analysis, we evaluated the characteristics, and outcomes of frail patients admitted to ICU with COVID-19.Methods: We contacted the corresponding authors of sixteen eligible studies published between December 1st 2019 and February 28th 2021 reporting the clinical frailty scale (CFS) in patients with confirmed COVID-19 admitted to ICU. Individual patient data was obtained from 7 studies. We classified patients as non-frail (CFS=1-4) or frail (CFS=5-8). The primary outcome was hospital mortality. We also compared the use of mechanical ventilation (MV) and the proportion of ICU bed-days between frailty categories. Results: Of the 2001 patients admitted to ICU, 388 (19.4%) were frail. Increasing age and sequential organ failure assessment (SOFA) score, CFS ≥4, use of MV, vasopressors, renal replacement therapy and hyperlactatemia were risk factors for death in a multivariable analysis. Hospital mortality was higher in frail patients (65.2% vs. 41.8%; pConclusion: Frail patients with COVID-19 were commonly admitted to ICU and had greater hospital mortality but spent relatively fewer days in ICU when compared with non-frail patients. Frail patients receiving MV were at greater risk of death than non-frail patients. Systematic review registration: Registration protocol in PROSPERO (CRD42020224255).

Brazil has been disproportionately affected by COVID-19, placing a high burden on ICUs.Are perceptions of ICU resource availability associated with end-of-life decisions and burnout among health care providers (HCPs) during COVID-19 surges in Brazil?We electronically administered a survey to multidisciplinary ICU HCPs during two 2-week periods (in June 2020 and March 2021) coinciding with COVID-19 surges. We examined responses across geographical regions and performed multivariate regressions to explore factors associated with reports of: (1) families being allowed less input in decisions about maintaining life-sustaining treatments for patients with COVID-19 and (2) emotional distress and burnout.We included 1,985 respondents (57% physicians, 14% nurses, 12% respiratory therapists, 16% other HCPs). More respondents reported shortages during the second surge compared with the first (P .05 for all comparisons), including lower availability of intensivists (66% vs 42%), ICU nurses (53% vs 36%), ICU beds (68% vs 22%), and ventilators for patients with COVID-19 (80% vs 70%); shortages were highest in the North. One-quarter of HCPs reported that families were allowed less input in decisions about maintaining life-sustaining treatments for patients with COVID-19, which was associated with lack of intensivists (adjusted relative risk [aRR], 1.37; 95% CI, 1.05-1.80) and ICU beds (aRR, 1.71; 95% CI, 1.16-2.62) during the first surge and lack of N95 masks (aRR, 1.43; 95% CI, 1.10-1.85), noninvasive positive pressure ventilation (aRR, 1.56; 95% CI, 1.18-2.07), and oxygen concentrators (aRR, 1.50; 95% CI, 1.13-2.00) during the second surge. Burnout was higher during the second surge (60% vs 71%; P .001), associated with witnessing colleagues at one's hospital contract COVID-19 during both surges (aRR, 1.55 [95% CI, 1.25-1.93] and 1.31 [95% CI, 1.11-1.55], respectively), as well as worries about finances (aRR, 1.28; 95% CI, 1.02-1.61) and lack of ICU nurses (aRR, 1.25; 95% CI, 1.02-1.53) during the first surge.During the COVID-19 pandemic, ICU HCPs in Brazil experienced substantial resource shortages, health care disparities between regions, changes in end-of-life care associated with resource shortages, and high proportions of burnout.

Effective shared decision-making relies on some degree of alignment between families and the medical team regarding a patient's likelihood of recovery. Patients with severe acute brain injury (SABI) are often unable to participate in decisions, and therefore family members make decisions on their behalf. The goal of this study was to evaluate agreement between prognostic predictions by families, physicians, and nurses of patients with SABI regarding their likelihood of regaining independence and to measure each group's prediction accuracy.This observational cohort study, conducted from 01/2018 to 07/2020, was based in the neuroscience and medical/cardiac intensive care units of a single center. Patient eligibility included a diagnosis of SABI-specifically stroke, traumatic brain injury, or hypoxic ischemic encephalopathy-and a Glasgow Coma Scale ≤ 12 after hospital day 2. At enrollment, families, physicians, and nurses were asked separately to predict a patient's likelihood of recovering to independence within 6 months on a 0-100 scale, regardless of whether a formal family meeting had occurred. True outcome was based on modified Rankin Scale assessment through a family report or medical chart review. Prognostic agreement was measured by (1) intraclass correlation coefficient; (2) mean group prediction comparisons using paired Student's t-tests; and (3) prevalence of concordance, defined as an absolute difference of less than 20 percentage points between predictions. Accuracy for each group was measured by calculating the area under a receiver operating characteristic curve (C statistic) and compared by using DeLong's test.Data were collected from 222 patients and families, 45 physicians, and 103 nurses. Complete data on agreement and accuracy were available for 187 and 177 patients, respectively. The intraclass correlation coefficient, in which 1 indicates perfect correlation and 0 indicates no correlation, was 0.49 for physician-family pairs, 0.40 for family-nurse pairs, and 0.66 for physician-nurse pairs. The difference in mean predictions between families and physicians was 23.5 percentage points (p 0.001), 25.4 between families and nurses (p 0.001), and 1.9 between physicians and nurses (p = 0.38). Prevalence of concordance was 39.6% for family-physician pairs, 30.0% for family-nurse pairs, and 56.2% for physician-nurse pairs. The C statistic for prediction accuracy was 0.65 for families, 0.82 for physicians, and 0.76 for nurses. The p values for differences in C statistics were 0.05 for family-physician and family-nurse groups and 0.18 for physician-nurse groups.For patients with SABI, agreement in predictions between families, physicians, and nurses regarding likelihood of recovery is poor. Accuracy appears higher for physicians and nurses compared with families, with no significant difference between physicians and nurses.

Interstitial lung diseases (ILDs) encompass a heterogeneous group of parenchymal lung disorders which have a significant burden on quality of life and exercise. The primary purpose of this randomised pilot trial performed in advanced ILD was to determine the feasibility and efficacy of a multidisciplinary palliative care approach (including physiotherapist, psychologist, pulmonologists, and palliative care doctors) to relieve patients' symptoms of dyspnoea, depression measured with the Center for Epidemiological Studies-Depression (CES-D) scale and quality-of-life (QoL) at 6 and 12 months.Fifty patients with confirmed interstitial lung disease at computed tomography (CT) scan and advanced disease were enrolled at our clinic. Patients were randomised to usual care group vs intervention group; in the intervention group, patients were scheduled to meet a physiotherapist, a psychologist, a palliative care doctor, and a pulmonologist specialized in ILD care. Data on dyspnoea, cough, quality of life and depression were recorded; patients in the intervention group were also tested to assess lower body flexibility and strength.Both groups showed a worsening in dyspnoea during the time course of the trial, but the Borg scale was less in the intervention group at 6 and 12 months. A similar trend was observed also for the CES-D scale. No differences were observed for the other scales.A multi-disciplinary palliative care intervention in patients with advanced fibrosing interstitial lung disease is feasible and effective.NCT02929966 on ClinGovTrial.

STRUCTURED Abstract Background As clinical care and research in adult congenital heart disease (ACHD) increasingly include a focus on quality of life, hearing and reflecting on our patients’ experiences must be a priority. The objective of this study was to describe how living with this chronic illness has affected the adult lives of patients living with ACHD. Methods We conducted a qualitative study of 25 participants in which we asked about the impact of ACHD on their quality of life. We used thematic analysis to analyze the interview data and identified themes reflecting patients’ reported experiences. Results Study participants were a mean age of 38 years (range 21–63 years) and reported good functional status. ACHD was characterized as simple (24%), moderate (32%), or complex (44%). Three major themes arose: 1) impact of ACHD on identity, including perception of “normal,” self-esteem, and motivation; 2) sources of emotional distress; and 3) influence on adult decision-making, including careers and relationships. Conclusion Living with ACHD impacts important aspects related to self-perceived quality of life. Addressing these concerns is important to providing comprehensive, patient-centered ACHD care.

Despite best efforts, a substantial proportion of patients admitted to intensive care units (ICUs) die either during care or after a trial of intensive supportive therapy that fails to improve the patient’s well-being and these patients often have palliative care needs that should be addressed. Patients who ultimately survive an ICU stay may also have important palliative care needs. In the ICU, the duality of hope and death challenges clinicians, family members of desperately ill patients, and sometimes the patients themselves. Given the high severity of illness, it is incumbent upon intensive care practitioners to develop the skills and promote creation of a therapeutic environment that can effectively deal with humane care for patients with serious illness. This is reflected in a growing medical literature, the development of clinical standards, and in a new research agenda addressing the needs of intensive care patients, their families, and the clinicians caring for them. This chapter reviews these developments and outlines frameworks for care strategies, symptom management, and quality improvement initiatives.

Although goals-of-care discussions are important for high-quality palliative care, this communication is often lacking for hospitalized older patients with serious illness. Electronic health records (EHR) provide an opportunity to identify patients who might benefit from these discussions and promote their occurrence, yet prior interventions using the EHR for this purpose are limited. We designed two complementary yet independent randomized trials to examine effectiveness of a communication-priming intervention (Jumpstart) for hospitalized older adults with serious illness.We report the protocol for these 2 randomized trials. Trial 1 has two arms, usual care and a clinician-facing Jumpstart, and is a pragmatic trial assessing outcomes with the EHR only (n = 2000). Trial 2 has three arms: usual care, clinician-facing Jumpstart, and clinician- and patient-facing (bi-directional) Jumpstart (n = 600). We hypothesize the clinician-facing Jumpstart will improve outcomes over usual care and the bi-directional Jumpstart will improve outcomes over the clinician-facing Jumpstart and usual care. We use a hybrid effectiveness-implementation design to examine implementation barriers and facilitators.For both trials, the primary outcome is EHR documentation of a goals-of-care discussion within 30 days of randomization; additional outcomes include intensity of end-of-life care. Trial 2 also examines patient- or family-reported outcomes assessed by surveys targeting 3-5 days and 4-8 weeks after randomization including quality of goals-of-care communication, receipt of goal-concordant care, and psychological symptoms.This novel study incorporates two complementary randomized trials and a hybrid effectiveness-implementation approach to improve the quality and value of care for hospitalized older adults with serious illness.STUDY00007031-A and STUDY00007031-B.

Objectives: The global COVID-19 pandemic made strict visitation policies necessary. We explored the experiences of family members of patients with severe acute brain injury focusing on the impact of family presence in the hospital. Methods: Semistructured interviews (February 2018-April 2020) were audiotaped, transcribed, and analyzed using thematic analysis. Results: We interviewed family members of 19 patients with stroke, traumatic brain injury, or cardiac arrest; five interviews occurred after initiation of restrictive visitation policies. Four key themes highlight the role of visitation on family's ability to (1) cope by being at the bedside, (2) protect and advocate for the patient, (3) build trust with clinicians, and (4) receive emotional support in the intensive care unit. After visitation restrictions, families found ways to communicate and support virtually and wished for proactive communication from clinicians. Conclusions: Family presence at patient's bedside fulfills important needs. Visitation restrictions require hospitals to be creative and inclusive to help maintain these connections.

Context Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood. Objective The objective of this study was to explore decision-making by patients and clinicians during inpatient goals-of-care discussions. Methods This is a qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts. Results Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n = 30) were female and their mean age was 60.1 years (SD = 12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments; 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. By contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions. Conclusion Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty.

Summary For patients with chronic, life-limiting illnesses, admission to the intensive care unit (ICU) near the end of life might not improve patient outcomes or be consistent with patient and family values, goals, and preferences. In this context, advance care planning and palliative care interventions designed to clarify patients' values, goals, and preferences have the potential to reduce provision of high-intensity interventions that are unwanted or non-beneficial. In this Series paper, we have assessed interventions that are effective at helping patients with chronic, life-limiting illnesses to avoid an unwanted ICU admission. The evidence found was largely from observational studies, with considerable heterogeneity in populations, methods, and types of interventions. Results from randomised trials of interventions to improve communication about goals of care are scarce, of variable quality, and mixed. Although observational studies show that advance care planning and palliative care interventions are associated with a reduced number of ICU admissions at the end of life, causality has not been well established. Using the available evidence we suggest recommendations to help to avoid ICU admission when it does not align with patient and family values, goals, and preferences and conclude with future directions for research.

Background ICU patients/surrogates may experience adverse outcomes related to perceived inappropriate treatment. The objective was to determine the prevalence of patient/surrogate-reported perceived inappropriate treatment, its impact on adverse outcomes, and discordance with clinicians. Methods We conducted a multicenter, prospective, observational study of adult ICU patients. Results For 151 patients, 1,332 patient, surrogate, nurse, and physician surveys were collected. Disagreement between patients/surrogates and clinicians regarding "too much" treatment being administered occurred in 26% of patients. Disagreement regarding "too little" treatment occurred in 10% of patients. Disagreement about perceived inappropriate treatment was associated with prognostic discordance (P = .02) and lower patient/surrogate satisfaction (Likert scale 1-5 of 4 vs 5; P = .02). Patient/surrogate respondents reported "too much" treatment in 8% of patients and "too little" treatment in 6% of patients. Perceived inappropriate treatment was associated with moderate or high respondent distress for 55% of patient/surrogate respondents and 35% of physician/nurse respondents (P = .30). Patient/surrogate perception of inappropriate treatment was associated with lower satisfaction (Family Satisfaction in the ICU Questionnaire-24, 69.9 vs 86.6; P = .002) and lower trust in the clinical team (Likert scale 1-5 of 4 vs 5; P = .007), but no statistically significant differences in depression (Patient Health Questionnaire-2 of 2 vs 1; P = .06) or anxiety (Generalized Anxiety Disorder-7 Scale of 7 vs 4; P = .18). Conclusions For approximately one-third of ICU patients, there is disagreement between clinicians and patients/surrogates about the appropriateness of treatment. Disagreement about appropriateness of treatment was associated with prognostic discordance and lower patient/surrogate satisfaction. Patients/surrogates who reported inappropriate treatment also reported lower satisfaction and trust in the ICU team.

Objectives:The Critical Care Choosing Wisely Task Force recommends that intensivists offer patients at high risk for death or severe functional impairment the option of pursuing care focused on comfort. We tested the a priori hypothesis that intensivists who are prompted to document patient prognosi

CONTEXT: Goals-of-care discussions are associated with improved end-of-life care for patients and therefore may be used as a process measure in quality improvement, research, and reimbursement programs. OBJECTIVES: To examine three methods to assess occurrence of a goals-of-care discussion - patient report, clinician report, and documentation in the electronic health record (EHR) - at a clinic visit for seriously ill patients and determine whether each method is associated with patient-reported receipt of goal-concordant care. METHODS: Secondary analysis of a multi-center cluster-randomized trial, with 494 patients and 124 clinicians caring for them. Self-reported surveys collected from patients and clinicians two weeks after a clinic visit assessed occurrence of a goals-of-care discussion. Documentation of a goals-of-care discussion was abstracted from the EHR. Patient-reported receipt of goal-concordant care was assessed by survey two weeks after the visit. RESULTS: 52% of patients reported occurrence of a goals-of-care discussion at the clinic visit; clinicians reported occurrence of a discussion at 66% of visits. EHR documentation occurred in 42% of visits (p

Purpose: The purposes of the study were to provide richer context for families' quantitative assessments of the quality of ICU care, and to describe further quality areas of importance for family members.Materials and methods: Free-text comments from 1077 family members of 920 patients focusing on family evaluation of ICU quality of care were analyzed using content analysis. Twenty-one Danish and Dutch ICUs participated from October 2014 to June 2015.Results: Four themes emerged as important to families: information, clinician skills, ICU environment, and discharge from the ICU. Families highlighted the importance of receiving information that was accessible, understandable and honest. They indicated that quality care was ensured by having clinicians who were both technically and interpersonally competent. The ICU environment and the circumstances of the transfer out of the ICU were described as contributing to quality of care. The comments identified room for improvement within all themes.Conclusions: The study highlights the importance of including both technical and emotional care for patients and families and the consequent need to focus on clinicians' mastery of interpersonal skills. (C) 2018 Elsevier Inc. All rights reserved.

Background Patients with adult congenital heart disease (ACHD) report that advance care planning (ACP) is important, and that they want information about prognosis. However, recognizing importance and being willing to participate are different constructs, and how and when to begin ACP and palliative care discussions remains ill-defined. Methods We conducted a cross-sectional survey of 150 consecutive outpatients to assess willingness to participate in ACP, with whom, and important barriers and facilitators to these discussions. Results The majority of participants (69%) reported being willing to participate in ACP; 79% to have a meeting to discuss goals and care preferences; and 91% to speak to a clinician who specializes in palliative care. Being married and anticipating a shorter lifespan were associated with increased reported willingness to participate in ACP. The health care provider with whom most participants preferred to have these discussions was their ACHD clinician. Participants identified important barriers and facilitators to these discussions. Conclusion Patients with ACHD report being willing to participate in ACP and palliative care discussions. Patients prefer to have these discussions with their ACHD clinicians, thus ACHD clinicians need to be prepared to address these issues as part of routine care.

Purpose Patient and family engagement plays an important role in the intensive care unit (ICU), however the degree to which practices are being implemented globally is not known. Materials To provide insights, a task force of the World Federation of Societies of Intensive and Critical Care Medicine conducted a cross-sectional survey. Results A total of 345 responses were received from 40 countries. Varying practices with respect to patient and family engagement were reported. Majority of those responding to individual survey questions (n=109, 61.2%) provided written materials on the ICU to family members. Just over half (n=184, 53.8%) of respondents identified that structured patient and family care conferences were held to review goals of care. Practices such as open visitation were reported by 39.6% (n=136), and family presence during resuscitation were reported to be fully (12%, n=41) or somewhat adopted (33%, n=113) by less than half of respondents. ICU diaries, music or pet therapy, or the use of a patient and family advisory group were reported by less than half of respondents. Conclusions We document and hence provide successful implementation techniques, tactics, and strategies that could help clinicians to address barriers to implementing patient and family engagement in the ICU.

Objectives Treatment decisions following severe acute brain injury need to consider patients' goals-of-care and long-term outcomes. Using family members as respondents, we aimed to assess patients' goals-of-care in the ICU and explore the impact of adaptation on survivors who did not reach the level of recovery initially considered acceptable. Design Prospective, observational, mixed-methods cohort study. Setting Comprehensive stroke and level 1 trauma center in Pacific Northwest United States. Participants Family members of patients with severe acute brain injury in an ICU for greater than 2 days and Glasgow Coma Scale score less than 12. Measurements and main results At enrollment, we asked what level of physical and cognitive recovery the patient would find acceptable. At 6 months, we assessed level of recovery through family surveys and chart review. Families of patients whose outcome was below that considered acceptable were invited for semistructured interviews, examined with content analysis. Results For 184 patients, most family members set patients' minimally acceptable cognitive recovery at "able to think and communicate" or better (82%) and physical recovery at independence or better (66%). Among 170 patients with known 6-month outcome, 40% had died in hospital. Of 102 survivors, 33% were able to think and communicate, 13% were independent, and 10% died after discharge. Among survivors whose family member had set minimally acceptable cognitive function at "able to think and communicate," 64% survived below that level; for those with minimally acceptable physical function at independence, 80% survived below that. Qualitative analysis revealed two key themes: families struggled to adapt to a new, yet uncertain, normal and asked for support and guidance with ongoing treatment decisions. Conclusions and relevance Six months after severe acute brain injury, most patients survived to a state their families initially thought would not be acceptable. Survivors and their families need more support and guidance as they adapt to a new normal and struggle with persistent uncertainty.

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.

Supplemental Digital Content is available in the text., Objectives: Being a caregiver for a patient in the ICU can place emotional burden on families and engaging families in caregiving can reduce psychological distress. Our goal was to observe support methods used by families in the ICU and identify differences between race/ethnicity. Design: A secondary analysis of a multicenter before-and-after clinical trial. Setting: Three hospitals in Chicago, Providence, and Florence, Italy. Participants: Family members of patients admitted to the ICU. Interventions: In the primary study, an intervention was designed to engage families in seven domains that were based on the five physical senses (taste, touch, sight, smell, and sound), personal care, and spiritual care of the patient. During the control phase, nursing staff observed and recorded if they witnessed families participating in support methods unprompted. MEASUREMENTS AND MAIN RESULTS: We compared the use of support methods among families from different races, categorized by race as either White, Black, or other using generalized estimating equation population-averaged logistic regression analysis. A total of 133 patients and 226 family members were enrolled in the control arm of the primary study, with patients being 71.2% White, 17% Black, and 11.8% other. Compared with Whites, families who identified their race Black or other may be more likely to participate in support methods that included personal care, touch, or spiritual care. Families who identified as Black may also be more likely to incorporate audio or sound. There were no differences in the categories of sight, smell, or taste. Conclusions: Our study identifies racial differences in the use of bedside support methods in the ICU. Guiding families in a culturally congruent and open-minded manner may have the potential to decrease family distress and improve the experience for families in the ICU.

Background The coronavirus disease 2019 (COVID-19) pandemic has severely affected ICUs and critical care health-care providers (HCPs) worldwide. Research Question How do regional differences and perceived lack of ICU resources affect critical care resource use and the well-being of HCPs? Study Design and Methods Between April 23 and May 7, 2020, we electronically administered a 41-question survey to interdisciplinary HCPs caring for patients critically ill with COVID-19. The survey was distributed via critical care societies, research networks, personal contacts, and social media portals. Responses were tabulated according to World Bank region. We performed multivariate log-binomial regression to assess factors associated with three main outcomes: limiting mechanical ventilation (MV), changes in CPR practices, and emotional distress and burnout. Results We included 2,700 respondents from 77 countries, including physicians (41%), nurses (40%), respiratory therapists (11%), and advanced practice providers (8%). The reported lack of ICU nurses was higher than that of intensivists (32% vs 15%). Limiting MV for patients with COVID-19 was reported by 16% of respondents, was lowest in North America (10%), and was associated with reduced ventilator availability (absolute risk reduction [ARR], 2.10; 95% CI, 1.61-2.74). Overall, 66% of respondents reported changes in CPR practices. Emotional distress or burnout was high across regions (52%, highest in North America) and associated with being female (mechanical ventilation, 1.16; 95% CI, 1.01-1.33), being a nurse (ARR, 1.31; 95% CI, 1.13-1.53), reporting a shortage of ICU nurses (ARR, 1.18; 95% CI, 1.05-1.33), reporting a shortage of powered air-purifying respirators (ARR, 1.30; 95% CI, 1.09-1.55), and experiencing poor communication from supervisors (ARR, 1.30; 95% CI, 1.16-1.46). Interpretation Our findings demonstrate variability in ICU resource availability and use worldwide. The high prevalence of provider burnout and its association with reported insufficient resources and poor communication from supervisors suggest a need for targeted interventions to support HCPs on the front lines.

During the coronavirus disease 2019 (COVID-19) pandemic, some healthcare facilities have, at times, reached the limits of their capacity to handle the surge in patient volume. Hospital beds and other medical resources became scarce as a consequence. Healthcare workers (HCWs) – both clinical and non-clinical – were required to increase their workload, under extremely stressful circumstances., Based on considerations of justice, healthcare workers must be able to rely on support and protection from the societies in which they work. Prioritisation of healthcare workers for vaccines may be a way to maintain a functioning healthcare system.

The COVID-19 pandemic strained health-care systems throughout the world. For some, available medical resources could not meet the increased demand and rationing was ultimately required. Hospitals and governments often sought to establish triage committees to assist with allocation decisions. However, for institutions operating under crisis standards of care (during times when standards of care must be substantially lowered in the setting of crisis), relying on these committees for rationing decisions was impractical-circumstances were changing too rapidly, occurring in too many diverse locations within hospitals, and the available information for decision making was notably scarce. Furthermore, a utilitarian approach to decision making based on an analysis of outcomes is problematic due to uncertainty regarding outcomes of different therapeutic options. We propose that triage committees could be involved in providing policies and guidance for clinicians to help ensure equity in the application of rationing under crisis standards of care. An approach guided by egalitarian principles, integrated with utilitarian principles, can support physicians at the bedside when they must ration scarce resources.

Purpose: To evaluate the association between provider religion and religiosity and consensus about end-of-life care and explore if geographical and institutional factors contribute to variability in practice. Materials and Methods: Using a modified Delphi method 22 end-of-life issues consisting of 35 definitions and 46 statements were evaluated in 32 countries in North America, South America, Eastern Europe, Western Europe, Asia, Australia and South Africa. A multidisciplinary, expert group from specialties treating patients at the end-of-life within each participating institution assessed the association between 7 key statements and geography, religion, religiosity and institutional factors likely influencing the development of consensus. Results: Of 3049 participants, 1366 (45%) responded. Mean age of respondents was 45 ± 9 years and 55% were females. Following 2 Delphi rounds, consensus was obtained for 77 (95%) of 81 definitions and statements. There was a significant difference in responses across geographical regions. South African and North American respondents were more likely to encourage patients to write advance directives. Fewer Eastern European and Asian respondents agreed with withdrawing life-sustaining treatments without consent of patients or surrogates. While respondent’s religion, years in practice or institution did not affect their agreement, religiosity, physician specialty and responsibility for end-of-life decisions did. Conclusions: Variability in agreement with key consensus statements about end-of-life care is related primarily to differences among providers, with provider-level variations related to differences in religiosity and specialty. Geography also plays a role in influencing some end-of-life practices. This information may help understanding ethical dilemmas and developing culturally sensitive end-of-life care strategies.

Natural Language Processing (NLP) is a key enabling technology for re-use of information in free-text clinical notes. However, a barrier to deployment is the availability of labeled corpora for supervised machine learning, which are expensive to acquire as they must be annotated by experienced clinicians. Where corpora are available, they may be opportunistically collected and thus vulnerable to bias. Here we evaluate an approach for accounting for dataset bias in the context of identifying specific patient-provider interactions. In this context, bias is the result of a phenomenon being over or under-represented in a particular type of clinical note as a result of the way a dataset was curated. Using a clinical dataset which represents a great deal of variation in terms of author and setting, we control for confounding variables using a backdoor adjustment approach [1, 2], which to our knowledge has not been previously applied the clinical domain. This approach improves precision by up to 5% and the adjusted models’ scores for false positives are generally lower, resulting in a more generalizable model with the potential to enhance the downstream utility of models trained using opportunistically collected clinical corpora.