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Physicians who specialize in pulmonary arterial hypertension (PAH) care for patients facing a serious, life-limiting illness. Palliative care is underutilized in patients with PAH, and little is known about how best to provide palliative care to this patient population.Using a qualitative approach, assess physicians' perspectives on barriers and facilitators to the use of palliative care in PAH.Participants were board-certified pulmonologists and cardiologists recruited from the Pulmonary Hypertension Association's list of physician specialists and academic center websites. We performed one-on-one semi-structured interviews that were recorded, transcribed, and analyzed using thematic analysis.Twelve physicians participated in the study, with a median age of 48.5 years and 20.5 years of clinical experience caring for patients with PAH. We identified the following themes and associated barriers and facilitators to effective implementation of palliative care for patients with PAH: a tailored approach to the individual patient; a PAH-specialist-led culture of care; effective collaboration with palliative care clinicians; and limitations imposed by health systems.PAH physicians are open to palliative care for their patients and are willing to partner with palliative care clinicians to implement this effectively and in the right setting. Areas for targeted improvement in enhancing palliative care for patients with PAH exist, especially enhancing collaboration between PAH physicians and palliative care specialists and navigating barriers in health systems.

© 2022 American Academy of Hospice and Palliative MedicineContext: The COVID-19 pandemic has highlighted variability in intensity of care. We aimed to characterize intensity of care among hospitalized patients with COVID-19. Objectives: Examine the prevalence and predictors of admission code status, palliative care consultation, comfort-measures-only orders, and cardiopulmonary resuscitation (CPR) among patients hospitalized with COVID-19. Methods: This cross-sectional study examined data from an international registry of hospitalized patients with COVID-19. A proportional odds model evaluated predictors of more aggressive code status (i.e., Full Code) vs. less (i.e., Do Not Resuscitate, DNR). Among decedents, logistic regression was used to identify predictors of palliative care consultation, comfort measures only, and CPR at time of death. Results: We included 29,923 patients across 179 sites. Among those with admission code status documented, Full Code was selected by 90% (n = 15,273). Adjusting for site, Full Code was more likely for patients who were of Black or Asian race (ORs 1.82, 95% CIs 1.5–2.19; 1.78, 1.15–3.09 respectively, relative to White race), Hispanic ethnicity (OR 1.89, CI 1.35–2.32), and male sex (OR 1.16, CI 1.0–1.33). Of the 4951 decedents, 29% received palliative care consultation, 59% transitioned to comfort measures only, and 29% received CPR, with non-White racial and ethnic groups less likely to receive comfort measures only and more likely to receive CPR. Conclusion: In this international cohort of patients with COVID-19, Full Code was the initial code status in the majority, and more likely among patients who were Black or Asian race, Hispanic ethnicity or male. These results provide direction for future studies to improve these disparities in care.

Seriously ill patients whose prioritized healthcare goals are understood by their clinicians are likely better positioned to receive goal-concordant care.To examine the proportion of seriously ill patients whose prioritized healthcare goal is accurately perceived by their clinician and identify factors associated with accurate perception.Secondary analysis of a multicenter cluster-randomized trial of outpatients with serious illness and their clinicians. Approximately two weeks after a clinic visit, patients reported their current prioritized healthcare goal- extending life over relief of pain and discomfort, or relief of pain and discomfort over extending life - and clinicians reported their perception of their patients' current prioritized healthcare goal; matching these items defined accurate perception.Of 252 patients with a prioritized healthcare goal, 60% had their goal accurately perceived by their clinician, 27% were cared for by clinicians who perceived prioritization of the alternative goal, and 13% had their clinician answer unsure. Patients who were older (OR 1.03 per year; 95%CI 1.01, 1.05), had stable goals (OR 2.52; 95%CI 1.26, 5.05), and had a recent goals-of-care discussion (OR 1.78, 95%CI 1.00, 3.16) were more likely to have their goals accurately perceived.A majority of seriously ill outpatients are cared for by clinicians who accurately perceive their patients' prioritized healthcare goals. However, a substantial portion are not and may be at higher risk for goal-discordant care. Interventions that facilitate goals-of-care discussions may help align care with goals, as recent discussions were associated with accurate perceptions of patients' prioritized goals.

CONTEXT: Documented goals-of-care discussions are an important quality metric for patients with serious illness. Natural language processing (NLP) is a promising approach for identifying goals-of-care discussions in the electronic health record (EHR). OBJECTIVES: To compare three NLP modeling approaches for identifying EHR documentation of goals-of-care discussions and generate hypotheses about differences in performance. METHODS: We conducted a mixed-methods study to evaluate performance and misclassification for three NLP featurization approaches modeled with regularized logistic regression: bag-of-words (BOW), rule-based, and a hybrid approach. From a prospective cohort of 150 patients hospitalized with serious illness over 2018–2020, we collected 4,391 inpatient EHR notes; 99 (2.3%) contained documented goals-of-care discussions. We used leave-one-out cross-validation to estimate performance by comparing pooled NLP predictions to human abstractors with receiver-operating-characteristic (ROC) and precision-recall (PR) analyses. We qualitatively examined a purposive sample of 70 NLP-misclassified notes using content analysis to identify linguistic features that allowed us to generate hypotheses underpinning misclassification. RESULTS: All three modeling approaches discriminated between notes with and without goals-of-care discussions (AUC(ROC): BOW, 0.907; rule-based, 0.948; hybrid, 0.965). Precision and recall were only moderate (precision at 70% recall: BOW, 16.2%; rule-based, 50.4%; hybrid, 49.3%; AUC(PR): BOW, 0.505; rule-based, 0.579; hybrid, 0.599). Qualitative analysis revealed patterns underlying performance differences between BOW and rule-based approaches. CONCLUSION: NLP holds promise for identifying EHR-documented goals-of-care discussions. However, the rarity of goals-of-care content in EHR data limits performance. Our findings highlight opportunities to optimize NLP modeling approaches, and support further exploration of different NLP approaches to identify goals-of-care discussions.

Racial inequities in palliative and end-of-life care have been well-documented for many years. This inequity is long-standing and resistant to many intervention efforts. One reason for this may be that research in racial inequity in palliative care, and the interventions developed, do not account for the effects of race and the everyday racism that patients of color experience while navigating the healthcare system. Public Health Critical Race Praxis (PHCRP) offers researchers new routes of inquiry to broaden the scope of research priorities in palliative care and improving racial outcomes through a novel conceptual framework and methodology. PHCRP, based off critical race theory (CRT), contains ten principles within four foci to guide researchers toward a more race conscious approach for the generation of research questions, research processes, and development of interventions targeting racial inequities.

CONTEXT: Patients with underlying chronic illness requiring mechanical ventilation for acute respiratory failure are at risk for poor outcomes and high costs. OBJECTIVES: Identify characteristics at time of intensive care unit (ICU) admission that identify patients at highest risk for high-intensity, costly care. METHODS: Retrospective cohort study using electronic health and financial records (2011–2017) for patients requiring ≥48 hours of mechanical ventilation with ≥1 underlying chronic condition at an academic healthcare system. Main outcome was total cost of index hospitalization. Exposures of interest included number and type of chronic conditions. We used finite mixture models to identify the highest-cost group. RESULTS: 4,892 patients met study criteria. Median cost for index hospitalization was $135,238 (range, $9,748-$3,176,065). Finite mixture modelling identified three classes with mean costs of $89,980, $150,603, and $277,712. Patients more likely to be in the high-cost class were: 1) < 72 years old (OR: 2.03; 95% CI:1.63, 2.52); 2) with dementia (OR: 1.55; 95% CI:1.17, 2.06) or chronic renal failure (OR: 1.27; 95% CI:1.08, 1.48); 3) weight loss ≥ 5% in year prior to hospital admission (OR: 1.25; 95% CI:1.05, 1.48); and 4) hospitalized during prior year (OR: 1.92; 95% CI:1.58, 2.35). CONCLUSION: Among patients with underlying chronic illness and acute respiratory failure, we identified characteristics associated with the highest costs of care. Identifying these patients may be of interest to healthcare systems and hospitals and serve as one indication to invest resources in palliative and supportive care programs that ensure this care is consistent with patients’ goals.

Context Human-centered design provides a framework to understand the needs of patients and clinicians who are the target of goals-of-care discussion priming tools. Few studies employ human-centered design to develop and refine their tools. Objectives To describe how human-centered design can be applied to the development and refinement of clinician- and patient-facing inpatient goals-of-care discussion guides (Jumpstart guides). Methods Human-centered design was applied to the development and refinement of the inpatient Jumpstart guides in four phases: (1) discovering problems based on prior pilots, studies, and research team priorities; (2) further defining problems based on stakeholder and expert review of the current guides; (3) designing solutions based on consensus among stakeholders; and (4) validating solutions after research team review of stakeholder comments. Results Five initial problems were identified by the research team in phase 1. After expert and stakeholder review in phase 2, 30 additional problems were identified related to Jumpstart guide format, structure, and content. In phase 3, stakeholders proposed solutions to these 35 problems and reached consensus on 32 of these. There was disagreement in 3 areas, including how to frame discussions around cardiopulmonary resuscitation and 2 perceived barriers to inpatient goals-of-care discussions. In phase 4, the research team reviewed all stakeholder input and reached final consensus on solutions to all of the identified problems. Conclusion Human-centered design is a useful tool for enhancing communication interventions in serious illness and can easily be integrated in future development and refinement of clinician- and patient-facing interventions to enhance goals-of-care discussions.

PURPOSE: Intensive care interventions that prolong life without achieving meaningful benefit are considered clinically “inappropriate”. In 2012, the frequency of perceived-inappropriate critical care was 10.8% at one academic health system; and we aimed to re-evaluate this frequency. METHODS: For 4 months in 2017, we surveyed critical care physicians daily and asked whether each patient was receiving appropriate, probably inappropriate, or inappropriate critical care. Patients were categorized into three groups: 1) patients for whom treatment was never inappropriate, 2) patients with at least one assessment that treatment was probably inappropriate, but no inappropriate treatment assessments, and 3) patients who had at least one assessment of inappropriate treatment. RESULTS: Fifty-five physicians made 10,105 assessments on 1424 patients. Of these, 94 (6.6%) patients received at least one assessment of inappropriate critical care, which is lower than 2012 (10.8% (p0.05). Inpatient mortality in 2017 was 73% for patients receiving inappropriate critical care. CONCLUSIONS: Over five years the proportion of patients perceived to be receiving inappropriate critical care dropped by 40%. Understanding the reasons for such change might elucidate how to continue to reduce inappropriate critical care.

Palliative care has potential to improve quality of life and goal-concordant care for patients with adult congenital heart disease (ACHD). However, it is rarely employed prior to critical illness because the best methods for implementation are not well-defined. We qualitatively evaluated ACHD patients' understanding of and opinions regarding palliative care and advance care planning (ACP) to better define the needs of this population. We conducted a thematic analysis of 25 semistructured interviews with patients with ACHD in which we assessed participants' perspectives on the need for, and barriers and facilitators to, the use of palliative care and ACP. In a group of participants with ACHD (mean age 38, 48% male) classified as simple (24%), moderate (32%), or complex (44%), we identified 4 major themes: (1) using knowledge to combat future uncertainties; (2) unfamiliarity with and limited exposure to palliative care and ACP; (3) facilitators and barriers to engaging in palliative care and ACP; and (4) importance of timing and presentation of ACP discussions. In conclusion, participants expressed a desire for knowledge about ACHD progression and treatment. They supported routine incorporation of palliative care and ACP and identified related facilitators and barriers to doing so. Importantly, timing and format of these discussions must be individualized using shared decision-making between clinicians, patients, and their families.

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.

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.

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.

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.

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

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.

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.

Effective prognostication for a novel disease presents significant challenges, especially given the stress induced during a pandemic. We developed a point-of-care tool to summarize outcome data for critically ill patients with COVID-19 and help guide clinicians through a thoughtful prognostication process. Two authors reviewed studies of outcomes of patients with critical illness due to COVID-19 and created a visual infographic tool based on available data. Survival data were supplemented by descriptions of best- and worst-case clinical scenarios. The tool also included prompts for clinician reflection designed to enhance awareness of cognitive biases that may affect prognostic accuracy. This online, open-source COVID-19 Prognostication Tool has been made available to all clinicians at our institution and is updated weekly to reflect evolving data. Our COVID-19 Prognostication Tool may provide a useful approach to promoting consistent and high-quality prognostic communication across a health care system.

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.

Context Recent analyses of Medicare data show decreases over time in intensity of end-of-life care. Few studies exist regarding trends in intensity of end-of-life care for those under 65 years of age. Objectives To examine recent temporal trends in place of death, and both hospital and intensive care unit (ICU) utilization, for age-stratified decedents with chronic, life-limiting diagnoses ( Methods Retrospective cohort using death certificates and electronic health records for 22,068 patients with chronic illnesses who died between 2010 and 2015. We examined utilization overall and stratified by age using multiple regression. Results The proportion of deaths at home did not change, but hospital admissions in the last 30 days of life decreased significantly from 2010 to 2015 (hospital b = −0.026; CI = −0.041, −0.012). ICU admissions in the last 30 days also declined over time for the full sample and for patients aged 65 years or older (overall b = −0.023; CI = −0.039, −0.007), but was not significant for younger decedents. Length of stay (LOS) did not decrease for those using the hospital or ICU. Conclusion From 2010 to 2015, we observed a decrease in hospital admissions for all age groups and in ICU admissions for those over 65 years. As there were no changes in the proportion of patients with chronic illness who died at home nor in hospital or ICU LOS in the last 30 days, hospital and ICU admissions in the last 30 days may be a more responsive quality metric than site of death or LOS for palliative care interventions.

Context Achieving adequate response rates from family members of critically ill patients can be challenging, especially when assessing psychological symptoms. Objectives To identify factors associated with completion of surveys about psychological symptoms among family members of critically ill patients. Methods Using data from a randomized trial of an intervention to improve communication between clinicians and families of critically ill patients, we examined patient-level and family-level predictors of the return of usable surveys at baseline, three months, and six months ( n = 181, 171, and 155, respectively). Family-level predictors included baseline symptoms of psychological distress, decisional independence preference, and attachment style. We hypothesized that family with fewer symptoms of psychological distress, a preference for less decisional independence, and secure attachment style would be more likely to return questionnaires. Results We identified several predictors of the return of usable questionnaires. Better self-assessed family member health status was associated with a higher likelihood and stronger agreement with a support-seeking attachment style with a lower likelihood, of obtaining usable baseline surveys. At three months, family-level predictors of return of usable surveys included having usable baseline surveys, status as the patient's legal next of kin, and stronger agreement with a secure attachment style. The only predictor of receipt of surveys at six months was the presence of usable surveys at three months. Conclusion We identified several predictors of the receipt of surveys assessing psychological symptoms in family of critically ill patients, including family member health status and attachment style. Using these characteristics to inform follow-up mailings and reminders may enhance response rates.

Heart failure patients contend with a markedly impaired quality of life, experiencing emotional distress and severe physical discomfort that increases in frequency in the last months of life. Improving communication between patients and providers about goals of care has the potential to improve patient-provider communication and patient outcomes.To determine the effects of a goals-of-care (GoC) intervention compared to usual care on the number of GoC conversations, quality of communication between patients and providers, referrals to palliative care services and completion of advance care directives.A two-group randomized study (n = 40/group) compared a GoC intervention to usual care, conducted in an academic heart failure (HF) clinic. The GoC intervention was a previsit patient activation-education, telephone-based intervention delivered by a nurse. The primary outcome of the study was number of GoC conversations between HF patients and HF providers. Secondary outcomes were quality of communication, number of referrals to palliative care, and completion of advance directives.Patients averaged 58.15 ± 11.26 years of age, with mean left ventricular ejection fraction = 30.31 ± 9.72% and Seattle Heart Failure Model scores = 95.1 ± 1.60. There was a significant increase in goals-of-care conversations (58% vs. 2.6%, P 0.001) and quality of end-of-life communication (P = 0.03) in the GoC group compared to usual care after the intervention. There were no differences between groups on the other outcomes.The GoC intervention resulted in more GoC conversations and higher quality communication between HF patients and providers without increased anxiety or depression. Further studies are needed to assess impact on longer term quality of care and patient outcomes.

Background To describe the study methods, baseline characteristics and burden of study procedures of an intervention designed to reduce family stress symptoms through early support from the palliative care team. Length of stay of ≥ 8 days was the trigger for early palliative care involvement. Methods Cluster-randomized trial with children as the unit of randomization. Up to 3 family members per child were recruited. Family stress symptoms were recorded at baseline, discharge from the ICU, and 3 months post-enrollment. Questionnaire burden was assessed on a 1–10 point scale at each time point and open-ended comments were analyzed to describe the participants' experience in the study. Results 380 family members of 220 children (control = 115 children and 204 family members; intervention = 105 children and 176 family members) were recruited, which represented 50% of all eligible families. Most family participants were parents (86% control; 92% intervention) and female (66% both groups). Retention rates were high through the 3-month follow-up: 93% and 90% for the control and intervention groups respectively. Questionnaire burden was very low: mean (sd) scores were 1.1 (1.6), 0.7 (1.5), and 0.9 (1.6) for the baseline, discharge and follow-up questionnaires, respectively. Comments suggest that participation was beneficial by promoting reflection and self-awareness about stress, coping and resilience, and feeling cared for because the intervention and questionnaires focused on their own well-being. Conclusions The participants' comments regarding the focus on them as the point of intervention reflects the value of conducting research with family members of seriously ill children during ICU stays.

Programs identifying patients needing palliative care and promoting advance care planning (ACP) are rare in Asia.This interventional cohort study aimed to identify hospitalized patients with palliative care needs using a validated palliative care screening tool (PCST), examine the ability of the PCST to predict mortality, and explore effects of a pragmatic ACP program targeted by PCST on the utilization of life-sustaining treatment during the last three months of life.In this prospective study, we used PCST to evaluate patients' palliative care needs between 2015 and 2016 and followed patients for three months. ACP with advance directives (ADs) was systematically offered to all patients with PCST score ≥4.Of 47,153 hospitalized patients, 10.4% had PCST score ≥4. During follow-up, 2121 individuals died within three months of palliative care screening: 1225 (25.0%) with PCST score ≥4 and 896 (2.1%) with PCST score4. After controlling for covariates, PCST score ≥4 was significantly associated with a higher mortality within three months of screening (adjusted odds ratio [AOR] 6.86; 95% CI 6.16-7.63). Moreover, ACP consultation (AOR 0.78; 95% CI 0.66-0.92) and AD completion (AOR 0.49; 95% CI 0.36-0.65) were associated with a lower likelihood of receiving life-sustaining treatments during the last three months of life.We demonstrated the feasibility of implementing a comprehensive palliative care program to identify patients with palliative care needs and promote ACP and AD in Eastern Asia. ACP consultation and AD completion were associated with reduced utilization of life-sustaining treatments during the last three months of life.

Our aging population and advances in chronic disease management that prolong the time that patients live with a chronic illness have combined to create an enormous need for improved palliative care research across diverse diseases. In this article, we describe the structure and processes of a National Institutes of Health-funded T32 postdoctoral research fellowship at the University of Washington and our experiences in developing and implementing the program. We recognize a broad definition of palliative care research, including research focused on improving quality of life, minimizing symptoms, providing psychological and spiritual support, and improving communication about patients' values and goals of care, all in the context of a serious illness. We describe our four core principles for postdoctoral training in palliative care research, each with a number of specific approaches: 1) mastering a set of essential content and research skills; 2) structured mentoring and academic career development; 3) creating and supporting early success; and 4) interdisciplinary training and team science. In addition, we also describe our framework for the essential competencies necessary for a palliative care research training program, our methods for identification and selection of applicants, our outcomes to date, and our processes of continuous quality assessment and improvement. Our goal is to describe our successful postdoctoral research training program in palliative care to promote development of new programs and share information between programs to continue to build the field of collaborative and interdisciplinary palliative care research.

Context Racial and ethnic differences in end-of-life care may be attributable to both patient preferences and health-care disparities. Identifying factors that differentiate preferences from disparities may enhance end-of-life care for critically ill patients and their families. Objectives To understand the association of minority race/ethnicity and education with family ratings of the quality of dying and death, taking into consideration possible markers of patient and family preferences for end-of-life care as mediators of this association. Methods Data were obtained from 15 intensive care units participating in a cluster-randomized trial of a palliative care intervention. Family members of decedents completed self-report surveys evaluating quality of dying. We used regression analyses to identify associations between race/ethnicity, education, and quality of dying ratings. We then used path analyses to investigate whether advance directives and life-sustaining treatment acted as mediators between patient characteristics and ratings of quality of dying. Results Family members returned 1290 surveys for 2850 decedents. Patient and family minority race/ethnicity were both associated with lower ratings of quality of dying. Presence of a living will and dying in the setting of full support mediated the relationship between patient race and family ratings; patient race exerted an indirect, rather than direct, effect on quality of dying. Family minority race had a direct effect on lower ratings of quality of dying. Neither patient nor family education was associated with quality of dying. Conclusion Minority race/ethnicity was associated with lower family ratings of quality of dying. This association was mediated by factors that may be markers of patient and family preferences (living will, death in the setting of full support); family member minority race/ethnicity was directly associated with lower ratings of quality of dying. Our findings generate hypothesized pathways that require future evaluation.