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© 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.

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.

Rationale Intensive care unit (ICU) visitation restrictions during the COVID-19 pandemic have drastically reduced family-engaged care. Understanding the impact of physical distancing on family members of ICU patients is needed to inform future policies. Objective To understand the experiences of family members of critically ill patients with COVID-19 when physically distanced from their loved ones and to explore ways clinicians may support them. Methods This qualitative study of an observational cohort study reports data from 74 family members of ICU patients with COVID-19 at ten US hospitals in four states, chosen based on geographic and demographic diversity. Adult family members of patients admitted to the ICU with COVID-19 during the early phase of the pandemic (February-June 2020) were invited to participate in a phone interview. Interviews followed a semi-structured guide to assess four constructs: illness narrative, stress experiences, communication experiences, and satisfaction with care. Interviews were transcribed verbatim and analyzed using an inductive approach to thematic analysis. Results Among 74 interviewees, the mean age was 53.0 years; 55% were white, and 76% were female. Physical distancing contributed to substantial stress and harms (nine themes). Participants described profound suffering and psychological illness, unfavorable perceptions of care, and weakened therapeutic relationship between family members and clinicians. Three communication principles emerged as those most valued by family members: contact, consistency, and compassion (the 3Cs). Family members offered suggestions to guide clinicians faced with communicating with physically distanced families. Conclusions Visitation restrictions impose substantial psychological harms upon family members of critically ill patients. Derived from the voices of family members, our findings warrant strong consideration when implementing visitation restrictions in the ICU and advocate for investment in infrastructure (including staffing and videoconferencing) to support communication. This study offers family-derived recommendations to operationalize the 3Cs to guide and improve communication in times of physical distancing during the COVID-19 pandemic and beyond.

OBJECTIVES. To identify the prevalence of screening criteria for acute and post-traumatic stress disorders, and stress symptoms among family members of children in the pediatric intensive care unit (PICU) for more than 8 days and examine risk factors for stress symptoms. DESIGN. Secondary analysis of data from the Family Communication Study, a randomized trial of a palliative care intervention conducted between 2010 and 2014. The sample included 377 family members of 220 children. Outcomes were symptom scores and diagnostic screening criteria for Acute Stress Disorder (ASD) and Post-Traumatic Stress Disorder (PTSD). Predictors included demographic and admission related characteristics, and hypothesized risk factors for developing stress-related mental health disorders. SETTING. An urban pediatric hospital in Seattle, WA. MEASUREMENTS AND MAIN RESULTS. The mean score for acute stress symptoms during the ICU stay was 40.3 (sd = 13.8) and 59 family members in total met diagnostic screening criteria for ASD during hospitalization (15.6%). At 3-month follow-up, the mean score for posttraumatic stress symptoms was 30.8 (sd = 12.9) and 52 family members met diagnostic criteria for PTSD (13.8%). Factors associated with meeting ASD screening criteria were unplanned admission and poorer family relationships. Factors associated with PTSD symptoms and diagnosis were longer length of stay, meeting ASD criteria during admission, child’s death, and less perceived social support. CONCLUSIONS. Meeting screening criteria for PTSD was associated with demographic, length of stay and family relationships among family members of seriously ill children. PTSD outcomes were higher among family members whose child died. This study helps identify risk factors that can be used to target needed psychosocial screening, monitoring and support during and following a prolonged PICU admission, as well as family-centered interventions and supportive bereavement intervention for the family members of a deceased child.

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.

BACKGROUND AND OBJECTIVES: People receiving maintenance dialysis must often rely on family members and other close persons to make critical treatment decisions toward the end of life. Contemporary data on family members’ understanding of the end-of-life wishes of members of this population are lacking. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: Among 172 family members of people undergoing maintenance dialysis, we ascertained their level of involvement in the patient’s care and prior discussions about care preferences. We also compared patient and family member responses to questions about end-of-life care using percentage agreement and the κ-statistic. RESULTS: The mean (SD) age of the 172 enrolled family members was 55 (±17) years, 136 (79%) were women, and 43 (25%) were Black individuals. Sixty-seven (39%) family members were spouses or partners of enrolled patients. A total of 137 (80%) family members had spoken with the patient about whom they would want to make medical decisions, 108 (63%) had spoken with the patient about their treatment preferences, 47 (27%) had spoken with the patient about stopping dialysis, and 56 (33%) had spoken with the patient about hospice. Agreement between patient and family member responses was highest for the question about whether the patient would want cardiopulmonary resuscitation (percentage agreement 83%, κ=0.31), and was substantially lower for questions about a range of other aspects of end-of-life care, including preference for mechanical ventilation (62%, 0.21), values around life prolongation versus comfort (45%, 0.13), preferred place of death (58%, 0.07), preferred decisional role (54%, 0.15), and prognostic expectations (38%, 0.15). CONCLUSIONS: Most surveyed family members reported they had spoken with the patient about their end-of-life preferences but not about stopping dialysis or hospice. Although family members had a fair understanding of patients’ cardiopulmonary resuscitation preferences, most lacked a detailed understanding of their perspectives on other aspects of end-of-life care.

BACKGROUND: Parents experience high distress following their child's diagnosis of cancer. We previously tested two delivery models (group and one-on-one) of the “Promoting Resilience in Stress Management for Parents” (PRISM-P) intervention in a randomized trial: one-on-one delivery improved resilience and benefit finding at three months when compared to usual care (UC). OBJECTIVE: The objective of this analysis was to evaluate quantitative and qualitative outcomes at six months. DESIGN: In this single-center, phase 2, parallel, 1:1:1 randomized trial conducted December 2016 to December 2018, English-speaking parents with a 2–24 year-old child diagnosed with new cancer were randomly assigned to UC, one-on-one, or group PRISM-P, a brief, skill-based curriculum targeting stress management, goal setting, cognitive reframing, and meaning making. We collected parent-reported outcomes (resilience, benefit finding, and psychological distress) at baseline and three and six months. We applied linear mixed-effects regression models to examine six-month outcomes among all participants and conducted directed content analyses of exit interviews with the first 12 parents to complete each study arm. RESULTS: The 94 participating parents were median aged 35–38 years and predominantly white, college-educated mothers. At six months, there was no statistically significant difference in parent-reported outcomes. Exit interviews (n = 36) suggested that PRISM-P was highly valued: 100% of interviewed recipients recommended it for other parents. Most suggested more coaching would help them retain skills, and almost all endorsed a combined one-on-one and group program. CONCLUSIONS: Although the PRISM-P benefits observed at three months were not sustained for six months, all interviewed parents found it valuable. Additional opportunities to strengthen and sustain resilience resources include longer follow-up, flexible format, and skill reinforcement. TRIAL REGISTRATION: NCT02998086.

Purpose: Although targeted psychosocial programming for adolescents and young adults (AYAs) with advanced cancer is a well-described priority, how best to engage AYAs in that programming is less clear. We aimed to examine AYA perspectives on facilitators and barriers to utilization of psychosocial programs and preferred mode of delivery. Methods: In this nested cohort study, AYAs participated in semistructured 1:1 interviews on communication needs. The present analysis focused on questions regarding psychosocial program delivery. Data were analyzed using directed content analysis followed by thematic content analysis to further organize and refine identified global themes and organizational themes. Results: We interviewed 32 patients (M(age) = 18, range 14–25, 41% female). Key facilitators to utilization of psychosocial services by AYAs were to (1) align in importance of coping skills, (2) emphasize AYA self-motivation and agency in approach and introduction to services, and (3) offer services to everyone and at multiple timepoints. Key AYA barriers included (1) considering themselves an exception to the rule when discussing the psychosocial needs of AYAs with cancer, (2) the challenge of starting something new, and (3) reluctance to share emotional problems with psychosocial clinicians. Regarding the mode of delivery, some preferred in-person delivery due to opportunities for developing a close relationship and therapeutic rapport-building. Mobile app-based delivery was universally appealing. Conclusion: We provide a potential framework to increase uptake of psychosocial services in the high needs population of AYAs with advanced cancer. Future research will explore implementation strategies for increasing AYA engagement in psychosocial intervention programs.

Background: It is not clear whether use of specialty palliative care consults and “comfort measures only” (CMO) order sets differ by type of intensive care unit (ICU). A better understanding of palliative care provided to these patients may help address heterogeneity of care across ICU types. Objectives: Examine utilization of specialty palliative care consultation and CMO order sets across several different ICU types in a multihospital academic health care system. Design: Retrospective cohort study using Washington State death certificates and data from the electronic health record. Setting/Subjects: Adults with a chronic medical illness who died in an ICU at one of two hospitals from July 2013 through December 2018. Five ICU types were identified by patient population and attending physician specialty. Measurements: Documentation of a specialty palliative care consult during a patient's terminal ICU stay and a CMO order set at time of death. Results: For 2706 eligible decedents, ICU type was significantly associated with odds of palliative care consultation (p

Background Polypharmacy raises the risk of drug-drug interactions and adverse events among patients with cancer. Most polypharmacy research has focused on adults age 65 or older enrolled in Medicare insurance. To better inform pharmacy practice and cancer care delivery, data are needed on polypharmacy among commercially insured patients with cancer and those younger than 65. Methods We performed a retrospective analysis of insurance enrollment and claims files linked to the Puget Sound Cancer Surveillance System for adults age 18 and older who were commercially insured, diagnosed with stage IV cancer, survived 30+ days after diagnosis, and did not enroll in hospice. We describe the prevalence of polypharmacy, chemotherapy use, and medication-related out-of-pocket (OOP) costs in the last month of life. Results Of 606 patients, 390 (64%) experienced polypharmacy (i.e. 5+ medications) in the last 30 days of life. Almost half (n = 297, 49%) received chemotherapy or targeted agents; chemotherapy was associated with significantly higher odds of polypharmacy (odds ratio (OR) 2.93, 95% confidence interval (CI) 2.04–4.20). The most commonly prescribed medications at end of life were opioids, benzodiazepines and anti-emetics. Among 484 patients (80%) incurring medication-related costs in the last month of life, median total OOP cost was $82 (interquartile range $30–$200). Seven patients (1%) had total costs above $5,000. The median chemotherapy-related OOP cost was $446 (IQR $150–$1896); 32 patients (7%) had chemotherapy-related OOP costs between $1,000 and $5,000. Conclusion Most patients with advanced cancer experienced polypharmacy at end of life, although most medications observed herein are commonly used for supportive care. Patients receiving chemotherapy had higher medication-related OOP costs, and chemotherapy was significantly associated with polypharmacy at end of life. Evaluation of polypharmacy at end of life may represent an important opportunity to improve quality of life and reduce costs for patients and families.

OBJECTIVES: To investigate the incidence, characteristics, and outcomes of in-hospital cardiac arrest in patients with coronavirus disease 2019 and to describe the characteristics and outcomes for patients with in-hospital cardiac arrest within the ICU, compared with non-ICU patients with in-hospital cardiac arrest. Finally, we evaluated outcomes stratified by age. DATA SOURCES: A systematic review of PubMed, EMBASE, and preprint websites was conducted between January 1, 2020, and December 10, 2020. Prospective Register of Systematic Reviews identification: CRD42020203369. STUDY SELECTION: Studies reporting on consecutive in-hospital cardiac arrest with a resuscitation attempt among patients with coronavirus disease 2019. DATA EXTRACTION: Two authors independently performed study selection and data extraction. Study quality was assessed with the Newcastle-Ottawa Scale. Data were synthesized according to the Preferred Reporting Items for Systematic Reviews guidelines. Discrepancies were resolved by consensus or through an independent third reviewer. DATA SYNTHESIS: Eight studies reporting on 847 in-hospital cardiac arrest were included. In-hospital cardiac arrest incidence varied between 1.5% and 5.8% among hospitalized patients and 8.0-11.4% among patients in ICU. In-hospital cardiac arrest occurred more commonly in older male patients. Most initial rhythms were nonshockable (83.9%, [asystole = 36.4% and pulseless electrical activity = 47.6%]). Return of spontaneous circulation occurred in 33.3%, with a 91.7% in-hospital mortality. In-hospital cardiac arrest events in ICU had higher incidence of return of spontaneous circulation (36.6% vs 18.7%; p < 0.001) and relatively lower mortality (88.7% vs 98.1%; p < 0.001) compared with in-hospital cardiac arrest in non-ICU locations. Patients greater than or equal to 60 years old had significantly higher in-hospital mortality than those less than 60 years (93.1% vs 87.9%; p = 0.019). CONCLUSIONS: Approximately, one in 20 patients hospitalized with coronavirus disease 2019 received resuscitation for an in-hospital cardiac arrest. Hospital survival after in-hospital cardiac arrest within the ICU was higher than non-ICU locations and seems comparable with prepandemic survival for nonshockable rhythms. Although the data provide guidance surrounding prognosis after in-hospital cardiac arrest, it should be interpreted cautiously given the paucity of information surrounding treatment limitations and resource constraints during the pandemic. Further research is into actual causative mechanisms is needed.

BACKGROUND: Most patients are unaware of approaches to treating advanced chronic kidney disease (CKD) other than dialysis. METHODS: We developed a dedicated decision aid on conservative kidney management using human-centered design principles in three phases: (1) discovery: engagement of informants to understand their needs and preferences; (2) design: multiple rapid cycles of ideation, prototyping, and testing of a decision aid with a small group of informants; and (3) implementation: testing the decision aid in real-world settings with attention to how the decision aid can be further refined. Informants included a national patient advisory committee on kidney diseases, 50 patients with stage 4 or 5 CKD and 35 of their family members, and 16 clinicians recruited from the greater Seattle area between June 2019 and September 2021. RESULTS: Findings from the discovery phase informed an initial prototype of the decision aid, which included five sections: a description of kidney disease and its signs and symptoms, an overview of conservative kidney management and the kinds of supports provided, self-reflection exercises to elicit patients’ values and goals, the pros and cons of conservative kidney management, and the option of changing one’s mind about conservative kidney management. The prototype underwent several rounds of iteration during its design phase, which resulted in the addition of an introductory section describing the intended audience and more detailed information in other sections. Findings from its implementation phase led to the addition of examples of common questions that patients and family members had about conservative kidney management and a final section on other related educational resources. CONCLUSIONS: Human-centered design principles supported a systematic and collaborative approach between researchers, patients, family members, and clinicians for developing a decision aid on conservative kidney management.

Rationale: Initial reports of case fatality rates (CFRs) among adults with coronavirus disease (COVID-19) receiving invasive mechanical ventilation (IMV) are highly variable. Objectives: To examine the CFR of patients with COVID-19 receiving IMV. Methods: Two authors independently searched PubMed, Embase, medRxiv, bioRxiv, the COVID-19 living systematic review, and national registry databases. The primary outcome was the “reported CFR” for patients with confirmed COVID-19 requiring IMV. “Definitive hospital CFR” for patients with outcomes at hospital discharge was also investigated. Finally, CFR was analyzed by patient age, geographic region, and study quality on the basis of the Newcastle-Ottawa Scale. Measurements and Results: Sixty-nine studies were included, describing 57,420 adult patients with COVID-19 who received IMV. Overall reported CFR was estimated as 45% (95% confidence interval [CI], 39–52%). Fifty-four of 69 studies stated whether hospital outcomes were available but provided a definitive hospital outcome on only 13,120 (22.8%) of the total IMV patient population. Among studies in which age-stratified CFR was available, pooled CFR estimates ranged from 47.9% (95% CI, 46.4–49.4%) in younger patients (age ≤40 yr) to 84.4% (95% CI, 83.3–85.4%) in older patients (age >80 yr). CFR was also higher in early COVID-19 epicenters. Overall heterogeneity is high (I2 >90%), with nonsignificant Egger’s regression test suggesting no publication bias. Conclusions: Almost half of patients with COVID-19 receiving IMV died based on the reported CFR, but variable CFR reporting methods resulted in a wide range of CFRs between studies. The reported CFR was higher in older patients and in early pandemic epicenters, which may be influenced by limited ICU resources. Reporting of definitive outcomes on all patients would facilitate comparisons between studies. Systematic review registered with PROSPERO (CRD42020186997).

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.

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.

IMPORTANCE: The psychological symptoms associated with having a family member admitted to the intensive care unit (ICU) during the COVID-19 pandemic are not well defined. OBJECTIVE: To examine the prevalence of symptoms of stress-related disorders, primarily posttraumatic stress disorder (PTSD), in family members of patients admitted to the ICU with COVID-19 approximately 90 days after admission. DESIGN, SETTING, AND PARTICIPANTS: This prospective, multisite, mixed-methods observational cohort study assessed 330 family members of patients admitted to the ICU (except in New York City, which had a random sample of 25% of all admitted patients per month) between February 1 and July 31, 2020, at 8 academic-affiliated and 4 community-based hospitals in 5 US states. EXPOSURE: Having a family member in the ICU with COVID-19. MAIN OUTCOMES AND MEASURES: Symptoms of PTSD at 3 months, as defined by a score of 10 or higher on the Impact of Events Scale 6 (IES-6). RESULTS: A total of 330 participants (mean [SD] age, 51.2 [15.1] years; 228 [69.1%] women; 150 [52.8%] White; 92 [29.8%] Hispanic) were surveyed at the 3-month time point. Most individuals were the patients’ child (129 [40.6%]) or spouse or partner (81 [25.5%]). The mean (SD) IES-6 score at 3 months was 11.9 (6.1), with 201 of 316 respondents (63.6%) having scores of 10 or higher, indicating significant symptoms of PTSD. Female participants had an adjusted mean IES-6 score of 2.6 points higher (95% CI, 1.4-3.8; P

High-quality goals-of-care communication is critical to delivering goal-concordant, patient-centered care to hospitalized patients with chronic life-limiting illness. However, implementation and documentation of goals-of-care discussions remain important shortcomings in many health systems.To evaluate the efficacy, feasibility, and acceptability of a patient-facing and clinician-facing communication-priming intervention to promote goals-of-care communication for patients hospitalized with serious illness.This randomized clinical trial enrolled patients from November 6, 2018, to February 18, 2020. The setting was 2 hospitals in an academic health care system in Seattle, Washington. Participants included hospitalized adults with chronic life-limiting illness, aged 65 years or older and with markers of frailty, or aged 80 years or older. Data analysis was performed from August 2020 to August 2021.Patients were randomized to usual care with baseline questionnaires (control) vs the Jumpstart communication-priming intervention. Patients or surrogates in the intervention group and their clinicians received patient-specific Jumpstart Guides populated with data from questionnaires and the electronic health records (EHRs) that were designed to prompt and guide a goals-of-care discussion.The primary outcome was EHR documentation of a goals-of-care discussion between randomization and hospital discharge. Additional outcomes included patient-reported or surrogate-reported goals-of-care discussions, patient-reported or surrogate-reported quality of communication, and intervention feasibility and acceptability.Of 428 eligible patients, this study enrolled 150 patients (35% enrollment rate; mean [SD] age, 59.2 [13.6] years; 66 women [44%]; 132 [88%] by patient consent and 18 [12%] by surrogate consent). Seventy-five patients each were randomized to the intervention and control groups. Compared with the control group, the cumulative incidence of EHR-documented goals-of-care discussions between randomization and hospital discharge was higher in the intervention group (16 of 75 patients [21%] vs 6 of 75 patients [8%]; risk difference, 13% [95% CI, 2%-24%]; risk ratio, 2.67 [95% CI, 1.10-6.44]; P = .04). Patient-reported or surrogate-reported goals-of-care discussions did not differ significantly between groups (30 of 66 patients [45%] vs 36 of 66 patients [55%]), although the intrarater consistency of patient and surrogate reports was poor. Patient-rated or surrogate-rated quality of communication did not differ significantly between groups. The intervention was feasible and acceptable to patients, surrogates, and clinicians.In this randomized clinical trial, a patient-facing and clinician-facing communication priming intervention for seriously ill, hospitalized patients promoted EHR-documented goals-of-care discussions before discharge with good feasibility and acceptability. Communication-priming interventions should be reexamined in a larger randomized clinical trial to better understand their effectiveness in the inpatient setting.ClinicalTrials.gov Identifier: NCT03746392.

ImportanceFamily members of patients with severe acute brain injury (SABI) are at risk for poor psychological outcomes.ObjectiveTo explore the utility of the early use of a palliative care needs checklist in identifying care needs of patients with SABI and family members who are at risk of poor psychological outcomes.Design, Setting, and ParticipantsThis prospective cohort study included patients with SABI in an intensive care unit (ICU) for 2 days or more and a Glasgow Coma Scale score of 12 or lower and their family members. This single-center study was conducted at an academic hospital in Seattle, Washington, from January 2018 to June 2021. Data were analyzed from July 2021 to July 2022.ExposureAt enrollment, a 4-item palliative care needs checklist was completed separately by clinicians and family members.Main Outcomes and MeasuresA single family member for each enrolled patient completed questionnaires assessing symptoms of depression and anxiety, perception of goal-concordant care, and satisfaction in the ICU. Six months later, family members assessed their psychological symptoms, decisional regret, patient functional outcome, and patient quality of life (QOL).ResultsA total of 209 patient–family member pairs (family member mean [SD] age, 51 [16] years; 133 women [64%]; 18 Asian [9%], 21 Black [10%], 20 [10%] Hispanic, and 153 White [73%] participants) were included. Patients had experienced stroke (126 [60%]), traumatic brain injury (62 [30%]), and hypoxic-ischemic encephalopathy (21 [10%]). At least 1 need was identified for 185 patients or their families (88%) by family members and 110 (53%) by clinicians (κ = −0.007; 52% agreement). Symptoms of at least moderate anxiety or depression were present in 50% of family members at enrollment (87 with anxiety and 94 with depression) and 20% at follow-up (33 with anxiety and 29 with depression). After adjustment for patient age, diagnosis, and disease severity and family race and ethnicity, clinician identification of any need was associated with greater goal discordance (203 participants; relative risk = 1.7 [95% CI, 1.2 to 2.5]) and family decisional regret (144 participants; difference in means, 17 [95% CI, 5 to 29] points). Family member identification of any need was associated with greater symptoms of depression at follow-up (150 participants; difference in means of Patient Health Questionnaire–2, 0.8 [95% CI, 0.2 to 1.3] points) and worse perceived patient QOL (78 participants; difference in means, −17.1 [95% CI, −33.6 to −0.5] points).Conclusions and RelevanceIn this prospective cohort study of patients with SABI and their families, palliative care needs were common, although agreement on needs was poor between clinicians and family members. A palliative care needs checklist completed by clinicians and family members may improve communication and promote timely, targeted management of needs.

ImportanceMany clinical trial outcomes are documented in free-text electronic health records (EHRs), making manual data collection costly and infeasible at scale. Natural language processing (NLP) is a promising approach for measuring such outcomes efficiently, but ignoring NLP-related misclassification may lead to underpowered studies.ObjectiveTo evaluate the performance, feasibility, and power implications of using NLP to measure the primary outcome of EHR-documented goals-of-care discussions in a pragmatic randomized clinical trial of a communication intervention.Design, Setting, and ParticipantsThis diagnostic study compared the performance, feasibility, and power implications of measuring EHR-documented goals-of-care discussions using 3 approaches: (1) deep-learning NLP, (2) NLP-screened human abstraction (manual verification of NLP-positive records), and (3) conventional manual abstraction. The study included hospitalized patients aged 55 years or older with serious illness enrolled between April 23, 2020, and March 26, 2021, in a pragmatic randomized clinical trial of a communication intervention in a multihospital US academic health system.Main Outcomes and MeasuresMain outcomes were natural language processing performance characteristics, human abstractor-hours, and misclassification-adjusted statistical power of methods of measuring clinician-documented goals-of-care discussions. Performance of NLP was evaluated with receiver operating characteristic (ROC) curves and precision-recall (PR) analyses and examined the effects of misclassification on power using mathematical substitution and Monte Carlo simulation.ResultsA total of 2512 trial participants (mean [SD] age, 71.7 [10.8] years; 1456 [58%] female) amassed 44 324 clinical notes during 30-day follow-up. In a validation sample of 159 participants, deep-learning NLP trained on a separate training data set identified patients with documented goals-of-care discussions with moderate accuracy (maximal F1 score, 0.82; area under the ROC curve, 0.924; area under the PR curve, 0.879). Manual abstraction of the outcome from the trial data set would require an estimated 2000 abstractor-hours and would power the trial to detect a risk difference of 5.4% (assuming 33.5% control-arm prevalence, 80% power, and 2-sided α = .05). Measuring the outcome by NLP alone would power the trial to detect a risk difference of 7.6%. Measuring the outcome by NLP-screened human abstraction would require 34.3 abstractor-hours to achieve estimated sensitivity of 92.6% and would power the trial to detect a risk difference of 5.7%. Monte Carlo simulations corroborated misclassification-adjusted power calculations.Conclusions and RelevanceIn this diagnostic study, deep-learning NLP and NLP-screened human abstraction had favorable characteristics for measuring an EHR outcome at scale. Adjusted power calculations accurately quantified power loss from NLP-related misclassification, suggesting that incorporation of this approach into the design of studies using NLP would be beneficial.

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.

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).

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.