Geriatric End-of-Life Screening Tool Prediction of 6-Month Mortality in Older Patients.

Importance: Emergency department (ED) visits by older adults with life-limiting illnesses are a critical opportunity to establish patient care end-of-life preferences, but little is known about the optimal screening criteria for resource-constrained EDs. Objectives: To externally validate the Geriatric End-of-Life Screening Tool (GEST) in an independent population and compare it with commonly used serious illness diagnostic criteria. Design, Setting, and Participants: This prognostic study assessed a cohort of patients aged 65 years and older who were treated in a tertiary care ED in Boston, Massachusetts, from 2017 to 2021. Patients arriving in cardiac arrest or who died within 1 day of ED arrival were excluded. Data analysis was performed from August 1, 2023, to March 27, 2024. Exposure: GEST, a logistic regression algorithm that uses commonly available electronic health record (EHR) datapoints and was developed and validated across 9 EDs, was compared with serious illness diagnoses as documented in the EHR. Serious illnesses included stroke/transient ischemic attack, liver disease, cancer, lung disease, and age greater than 80 years, among others. Main Outcomes and Measures: The primary outcome was 6-month mortality following an ED encounter. Statistical analyses included area under the receiver operating characteristic curve, calibration analyses, Kaplan-Meier survival curves, and decision curves. Results: This external validation included 82 371 ED encounters by 40 505 unique individuals (mean [SD] age, 76.8 [8.4] years; 54.3% women, 13.8% 6-month mortality rate). GEST had an external validation area under the receiver operating characteristic curve of 0.79 (95% CI, 0.78-0.79) that was stable across years and demographic subgroups. Of included encounters, 53.4% had a serious illness, with a sensitivity of 77.4% (95% CI, 76.6%-78.2%) and specificity of 50.5% (95% CI, 50.1%-50.8%). Varying GEST cutoffs from 5% to 30% increased specificity (5%: 49.1% [95% CI, 48.7%-49.5%]; 30%: 92.2% [95% CI, 92.0%-92.4%]) at the cost of sensitivity (5%: 89.3% [95% CI, 88.8-89.9]; 30%: 36.2% [95% CI, 35.3-37.1]). In a decision curve analysis, GEST outperformed serious illness criteria across all tested thresholds. When comparing patients referred to intervention by GEST with serious illness criteria, GEST reclassified 45.1% of patients with serious illness as having low risk of mortality with an observed mortality rate 8.1% and 2.6% of patients without serious illness as having high mortality risk with an observed mortality rate of 34.3% for a total reclassification rate of 25.3%. Conclusions and Relevance: The findings of this study suggest that both serious illness criteria and GEST identified older ED patients at risk for 6-month mortality, but GEST offered more useful screening characteristics. Future trials of serious illness interventions for high mortality risk in older adults may consider transitioning from diagnosis code criteria to GEST, an automatable EHR-based algorithm.

Applying human-centered design to adapt the Jumpstart Guide for goals-of-care discussions in persons living with dementia.

BACKGROUND: Goals-of-care discussions (GOCD) are uncommon in persons living with dementia (PLWD) despite the likelihood of eventual loss of decisional capacity in the population. The Jumpstart Guide, an existing serious illness communication priming tool, can improve GOCD in certain populations, but has not previously been adapted for use among PLWD and their caregivers. METHODS: Using human-centered design (HCD), we adapted the Jumpstart Guide for use with PLWD and their caregivers. We conducted qualitative interviews with clinicians and caregivers of PLWD. Six team members conducted qualitative rapid analysis of interviews leading to the development of summary templates and integrative matrices. Four iterations of the Jumpstart Guide led to the final version. RESULTS: Thirteen clinicians and 11 caregivers were interviewed. Interviews provided key insights into the unique barriers PLWD and their caregivers face during GOCD, including discomfort with accepting a dementia diagnosis and concern with using "serious illness" to describe dementia, as is commonly done in palliative care. Clinicians described differences in GOCD with PLWD compared to other serious illnesses, and the challenge of getting patients and families to think about future health states. Interviews led to Jumpstart Guide adaptations in the following domains: (1) format and structure, (2) content, and (3) specific language. Suggested changes included prioritizing naming a decision-maker, changing conversation prompts to improve accessibility and understandability, ensuring the Jumpstart Guide could be used with patients as well as their caregivers, and altering language to avoid references to "serious illness" and "abilities." CONCLUSION: Using HCD yielded valuable insights from clinicians and caregivers about the unique barriers to conducting GOCD among PLWD and their caregivers. These insights were used to adapt the Jumpstart Guide for use with PLWD and their caregivers, which is currently being tested in a pragmatic randomized controlled trial in outpatient clinics.

Mechanical Ventilation in Older Adults With Dementia: Opportunities to Promote Goal-Concordant Care.

CONTEXT: Recent studies show increasing use of mechanical ventilation among people living with dementia. There are concerns that this trend may not be driven by patient preferences. OBJECTIVES: To better understand decision-making regarding mechanical ventilation in people living with dementia. METHODS: This was an electronic health record-based retrospective cohort study of older adults with dementia (n = 295) hospitalized at one of two teaching hospitals between 2015 and 2019 who were supported with mechanical ventilation (n = 191) or died without mechanical ventilation (n = 104). Multivariable logistic regression was used to examine associations between patient characteristics and mechanical ventilation use. RESULTS: The median age was 78 years (IQR 71-86), 41% were female, 28% resided in a nursing home, and 58% had clinical markers of advanced dementia (dehydration, weight loss, mobility limitations, or pressure ulcers). Among patients supported with mechanical ventilation, 70% were intubated within 24 hours of presentation, including 31% intubated before hospital arrival. Younger age, higher illness acuity, and absence of a treatment-limiting Physician Orders for Life-Sustaining Treatment document were associated with mechanical ventilation use; nursing home residence and clinical markers of advanced dementia were not. Most patients (89%) had a documented goals of care discussion (GOCD) during hospitalization. CONCLUSION: Future efforts to promote goal-concordant care surrounding mechanical ventilation use for people living with dementia should involve identifying barriers to goal-concordant care in pre-hospital settings, assessing the timeliness of in-hospital GOCD, and developing strategies for in-the-moment crisis communication across settings.

"We'll deal with it as it comes": A Qualitative Analysis of Romantic Partners' Dyadic Coping in Cystic Fibrosis.

Background: Although cystic fibrosis (CF) is a progressive, life-limiting, genetic disease, recent advances have extended survival, allowing persons with CF the time and physical and mental health to form romantic relationships. Previous studies have shown the importance of dyadic coping to positive psychosocial functioning and relationship satisfaction for people with serious chronic illness and their romantic partners, but little work has been done with persons with CF and their partners. The present study examines dyadic coping processes in persons with CF and their romantic partners. Methods: Sixteen adults with moderate to severe CF (Mage=42.3, 43.8% identified as cisgender male, 56.2% identified as cisgender female) and their romantic partners (Mage=43.8, 56.3% identified as cisgender male, 43.7% identified as cisgender female) participated in individual semi-structured interviews focused on topics related to quality of life, communication, and palliative care. We conducted a directed content analysis utilizing Berg and Upchurch's (2007) developmental-contextual theoretical model to examine dyadic coping processes in persons with CF and their romantic partners. Results: Consistent with the developmental-contextual model of dyadic coping, couples described adapting to health and functional declines that occurred over time. Dyads were aligned in their appraisals of illness representation, illness ownership, and perspectives of illness as a shared stressor; they used shared coping mechanisms that included supportive and collaborative actions rather than uninvolved or controlling strategies. Conclusions: We recommend family-based approaches to medical decision-making and goals of care conversations with persons with CF and their partners, aligning those approaches with supportive and collaborative coping configurations. This may improve psychosocial outcomes for patients and their partners.

An alternating-intervention pilot trial on the impact of an informational handout on patient-reported outcomes and follow-up after lung cancer screening.

INTRODUCTION: Lung cancer screening (LCS) can reduce lung cancer mortality; however, poor understanding of results may impact patient experience and follow-up. We sought to determine whether an informational handout accompanying LCS results can improve patient-reported outcomes and adherence to follow-up. STUDY DESIGN: This was a prospective alternating intervention pilot trial of a handout to accompany LCS results delivery. SETTING/PARTICIPANTS: Patients undergoing LCS in a multisite program over a 6-month period received a mailing containing either: 1) a standardized form letter of LCS results (control) or 2) the LCS results letter and the handout (intervention). INTERVENTION: A two-sided informational handout on commonly asked questions after LCS created through iterative mixed-methods evaluation with both LCS patients and providers. OUTCOME MEASURES: The primary outcomes of 1)patient understanding of LCS results, 2)correct identification of next steps in screening, and 3)patient distress were measured through survey. Adherence to recommended follow-up after LCS was determined through chart review. Outcomes were compared between the intervention and control group using generalized estimating equations. RESULTS: 389 patients were eligible and enrolled with survey responses from 230 participants (59% response rate). We found no differences in understanding of results, identification of next steps in follow-up or distress but did find higher levels of knowledge and understanding on questions assessing individual components of LCS in the intervention group. Follow-up adherence was overall similar between the two arms, though was higher in the intervention group among those with positive findings (p = 0.007). CONCLUSIONS: There were no differences in self-reported outcomes between the groups or overall follow-up adherence. Those receiving the intervention did report greater understanding and knowledge of key LCS components, and those with positive results had a higher rate of follow-up. This may represent a feasible component of a multi-level intervention to address knowledge and follow-up for LCS. TRIAL REGISTRATION: ClinicalTrials.gov NCT05265897.

Fixed, Dilated, and Cannulated - Medical Management of Elevated Intracranial Pressures due to a Large Intracranial Hemorrhage in a Patient on Veno-Venous Extracorporeal Membrane Oxygenation: Case Report.

A 40-year-old woman presented with mediastinitis, necrotizing pancreatitis, and severe acute respiratory distress syndrome with refractory acidemia (pH 7.14) and hypercapnia (PaCO2 115 mmHg), requiring veno-venous extracorporeal membrane oxygenation (ECMO). Eight hours after cannulation, and rapid correction of PaCO2 to 44 mmHg, she was found to have bilaterally fixed and dilated pupils. Imaging showed a 60 mL left-sided temporoparietal intracranial hemorrhage with surrounding edema, 8 mm midline shift, intraventricular hemorrhage, and impending herniation. Decompressive hemicraniectomy was not offered due to concern for medical instability. After receiving a dose of mannitol, her pupillary and motor exam improved. An intracranial pressure (ICP) monitor was placed to guide hyperosmolar therapy administration, hemodynamic targets, and sweep gas titration. On hospital day (HD) 5, her ICP monitor was removed. Follow-up imaging revealed resolution of mass effect and no brainstem injury. She was subsequently extubated (HD 9) and discharged home (HD 40). One year after hospitalization, she is living at home with minimal residual deficits. This case highlights the utility of targeted, medical ICP management and importance of assessing response to conservative therapies when considering prognosis in patients on ECMO with severe acute brain injury.

Achieving Goals of Care Decisions in Chronic Critical Illness: A Multi-Institutional Qualitative Study.

BACKGROUND: Physicians, patients, and families alike perceive a need to improve how goals of care (GOC) decisions occur in chronic critical illness (CCI), but little is currently known about this decision-making process. RESEARCH QUESTION: How do intensivists from various health systems facilitate decision-making about GOC for patients with CCI? What are barriers to, and facilitators of, this decision-making process? STUDY DESIGN AND METHODS: We conducted semistructured interviews with a purposeful sample of intensivists from the United States and Canada using a mental models approach adapted from decision science. We analyzed transcripts inductively using qualitative description. RESULTS: We interviewed 29 intensivists from six institutions. Participants across all sites described GOC decision-making in CCI as a complex, longitudinal, and iterative process that involved substantial preparatory work, numerous stakeholders, and multiple family meetings. Intensivists required considerable time to collect information on prior events and conversations, and to arrive at a prognostic consensus with other involved physicians prior to meeting with families. Many intensivists stressed the importance of scheduling multiple family meetings to build trust and relationships prior to explicitly discussing GOC. Physician-identified barriers to GOC decision-making included 1-week staffing models, limited time and cognitive bandwidth, difficulty eliciting patient values, and interpersonal challenges with care team members or families. Potential facilitators included scheduled family meetings at regular intervals, greater interprofessional involvement in decisions, and consistent messaging from care team members. INTERPRETATION: Intensivists described a complex time- and labor-intensive group process to achieve GOC decision-making in CCI. System-level interventions that improve how information is shared between physicians and decrease logistical and relational barriers to timely and consistent communication are key to improving GOC decision-making in CCI.

Factors Associated with Costly Hospital Care among Patients with Dementia and Acute Respiratory Failure.

Rationale: Understanding contributors to costly and potentially burdensome care for patients with dementia is of interest to healthcare systems and may facilitate efforts to promote goal-concordant care. Objective: To identify risk factors, in particular whether an early goals-of-care discussion (GOCD) took place, for high-cost hospitalization among patients with dementia and acute respiratory failure. Methods: We conducted an electronic health record-based retrospective cohort study of 298 adults with dementia hospitalized with respiratory failure (receiving ⩾48 h of mechanical ventilation) within an academic healthcare system. We collected demographic and clinical characteristics, including clinical markers of advanced dementia (weight loss, pressure ulcers, hypernatremia, mobility limitations) and intensive care unit (ICU) service (medical, surgical, neurologic). We ascertained whether a GOCD was documented within 48 hours of ICU admission. We used logistic regression to identify patient characteristics associated with high-cost hospitalization measured using the hospital system accounting database and defined as total cost in the top third of the sample (⩾$145,000). We examined a path model that included hospital length of stay as a final mediator between exposure variables and high-cost hospitalization. Results: Patients in the sample had a median age of 71 (IQR, 62-79) years. Approximately half (49%) were admitted to a medical ICU, 29% to a surgical ICU, and 22% to a neurologic ICU. More than half (59%) had a clinical indicator of advanced dementia. A minority (31%) had a GOCD documented within 48 hours of ICU admission; those who did had a 50% lower risk of a high-cost hospitalization (risk ratio, 0.50; 95% confidence interval, 0.2-0.8). Older age, limited English proficiency, and nursing home residence were associated with a lower likelihood of high-cost hospitalization, whereas greater comorbidity burden and admission to a surgical or neurologic ICU compared with a medical ICU were associated with a higher likelihood of high-cost hospitalization. Conclusions: Early GOCDs for patients with dementia and respiratory failure may promote high-value care by ensuring aggressive and costly life support interventions are aligned with patients' goals. Future work should focus on increasing early palliative care delivery for patients with dementia and respiratory failure, in particular in surgical and neurologic ICU settings.

Questions From Family Members During the Dying Process And Moral Distress Experienced by ICU Nurses.

BACKGROUND: For a hospitalized patient, transitioning to comfort measures only (CMO) involves discontinuation of life-prolonging interventions with a goal of allowing natural death. Nurses play a pivotal role during the provision of CMO, caring for both the dying patient and their family. OBJECTIVE: To examine the experiences of ICU nurses caring for patients receiving CMO. METHODS: Between October 2020 and June 2021, nurses in the neuro- and medical-cardiac intensive care units at Harborview Medical Center in Seattle, WA, completed surveys about their experiences providing CMO. Surveys addressed involvement in discussions about CMO and questions asked by family members of dying patients. We also assessed nurses' moral distress related to CMO and used ordinal logistic regression to examine predictors of moral distress. RESULTS: Surveys were completed by 82 nurses (response rate 44%), with 79 (96%) reporting experience providing CMO in the previous year. Most preferred to be present for discussions between physicians or advanced practice providers and family members about transitioning to CMO (89% most of the time or always); however, only 31% were present most of the time or always. Questions from family about time to death, changes in breathing, and medications to relieve symptoms were common. Most nurses reported moral distress at least some of the time when providing CMO (62%). Feeling well-prepared to answer specific questions from family was associated with less moral distress. CONCLUSION: There is discordance between nurses' preferences for inclusion in discussions about the transition to CMO and their actual presence. Moral distress is common for nurses when providing CMO and feeling prepared to answer questions from family members may attenuate distress.

Physician Perspectives on Addressing Anti-Black Racism.

Importance: Uncertainty remains among clinicians regarding processes to address and resolve conflict around anti-Black racism. Objective: To elicit clinicians' perceptions of their role in addressing concerns about anti-Black racism among Black patients with serious illness as well as their families. Design, Setting, and Participants: In this qualitative study, one-on-one semistructured interviews were conducted with 21 physicians at an academic county hospital between August 1 and October 31, 2022. Participants were provided clinical scenarios where anti-Black racism was a concern of a patient with serious illness. Participants were asked open-ended questions about initial impressions, prior similar experiences, potential strategies to address patients' concerns, and additional resources to support these conversations. A framework based on restorative justice was used to guide qualitative analyses. Main Outcomes and Measures: Perspectives on addressing anti-Black racism as described by physicians. Results: A total of 21 medical subspecialists (mean [SD] age, 44.2 [7.8] years) participated in the study. Most physicians were women (14 [66.7%]), 4 were Asian (19.0%), 3 were Black (14.3%), and 14 were White (66.7%). Participants identified practices that are normalized in clinical settings that may perpetuate and exacerbate perceptions of anti-Black racism. Using provided scenarios and personal experiences, participants were able to describe how Black patients are harmed as a result of these practices. Last, participants identified strategies and resources for addressing Black patients' concerns and facilitating conflict resolution, but they stopped short of promoting personal or team accountability for anti-Black racism. Conclusions and Relevance: In this qualitative study, physicians identified resources, skills, and processes that partially aligned with a restorative justice framework to address anti-Black racism and facilitate conflict resolution, but did not provide steps for actualizing accountability. Restorative justice and similar processes may provide space within a mediated setting for clinicians to repair harm, provide accountability, and facilitate racial healing.

Defining the Time-limited Trial for Patients with Critical Illness: An Official American Thoracic Society Workshop Report.

In critical care, the specific, structured approach to patient care known as a "time-limited trial" has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patient's response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trial's duration. The plan's 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.

Palliative Care Consultation and Family-Centered Outcomes in Patients With Unplanned Intensive Care Unit Admissions.

Context: Hospitalized patients who experience unplanned intensive care unit (ICU) admissions face significant challenges, and their family members have unique palliative care needs. Objectives: To identify predictors of palliative care consultation among hospitalized patients with unplanned ICU admissions and to examine the association between palliative care consultation and family outcomes. Methods: We conducted a prospective cohort study of patients with unplanned ICU admissions at two medical centers in Seattle, WA. This study was approved by the institutional review board at the University of Washington (STUDY00008182). Using multivariable logistic regression, we examined associations between patient characteristics and palliative care consultation. Family members completed surveys assessing psychological distress within 90 days of patient discharge. Adjusted ordinal probit or binary logistic regression models were used to identify associations between palliative care consultation and family symptoms of psychological distress. Results: In our cohort (n = 413 patients and 272 family members), palliative care was consulted for 24% of patients during hospitalization (n = 100), with the majority (93%) of these consultations occurring after ICU admission. Factors associated with palliative care consultation after ICU transfer included enrollment site (OR, 2.29; 95% CI: 1.17-4.50), Sequential Organ Failure Assessment score at ICU admission (OR, 1.12; 95% CI: 1.05-1.19), and reason for hospital admission (kidney dysfunction [OR, 7.02; 95% CI: 1.08-45.69]). There was no significant difference in family symptoms of depression or posttraumatic stress based on palliative care consultation status. Conclusions: For patients experiencing unplanned ICU admission, palliative care consultation often happened after transfer and was associated with illness severity, comorbid illness, and hospital site. Patient death was associated with family symptoms of psychological distress.

Intervention to Promote Communication About Goals of Care for Hospitalized Patients With Serious Illness: A Randomized Clinical Trial.

Importance: Discussions about goals of care are important for high-quality palliative care yet are often lacking for hospitalized older patients with serious illness. Objective: To evaluate a communication-priming intervention to promote goals-of-care discussions between clinicians and hospitalized older patients with serious illness. Design, Setting, and Participants: A pragmatic, randomized clinical trial of a clinician-facing communication-priming intervention vs usual care was conducted at 3 US hospitals within 1 health care system, including a university, county, and community hospital. Eligible hospitalized patients were aged 55 years or older with any of the chronic illnesses used by the Dartmouth Atlas project to study end-of-life care or were aged 80 years or older. Patients with documented goals-of-care discussions or a palliative care consultation between hospital admission and eligibility screening were excluded. Randomization occurred between April 2020 and March 2021 and was stratified by study site and history of dementia. Intervention: Physicians and advance practice clinicians who were treating the patients randomized to the intervention received a 1-page, patient-specific intervention (Jumpstart Guide) to prompt and guide goals-of-care discussions. Main Outcomes and Measures: The primary outcome was the proportion of patients with electronic health record-documented goals-of-care discussions within 30 days. There was also an evaluation of whether the effect of the intervention varied by age, sex, history of dementia, minoritized race or ethnicity, or study site. Results: Of 3918 patients screened, 2512 were enrolled (mean age, 71.7 [SD, 10.8] years and 42% were women) and randomized (1255 to the intervention group and 1257 to the usual care group). The patients were American Indian or Alaska Native (1.8%), Asian (12%), Black (13%), Hispanic (6%), Native Hawaiian or Pacific Islander (0.5%), non-Hispanic (93%), and White (70%). The proportion of patients with electronic health record-documented goals-of-care discussions within 30 days was 34.5% (433 of 1255 patients) in the intervention group vs 30.4% (382 of 1257 patients) in the usual care group (hospital- and dementia-adjusted difference, 4.1% [95% CI, 0.4% to 7.8%]). The analyses of the treatment effect modifiers suggested that the intervention had a larger effect size among patients with minoritized race or ethnicity. Among 803 patients with minoritized race or ethnicity, the hospital- and dementia-adjusted proportion with goals-of-care discussions was 10.2% (95% CI, 4.0% to 16.5%) higher in the intervention group than in the usual care group. Among 1641 non-Hispanic White patients, the adjusted proportion with goals-of-care discussions was 1.6% (95% CI, -3.0% to 6.2%) higher in the intervention group than in the usual care group. There was no evidence of differential treatment effects of the intervention on the primary outcome by age, sex, history of dementia, or study site. Conclusions and Relevance: Among hospitalized older adults with serious illness, a pragmatic clinician-facing communication-priming intervention significantly improved documentation of goals-of-care discussions in the electronic health record, with a greater effect size in racially or ethnically minoritized patients. Trial Registration: ClinicalTrials.gov Identifier: NCT04281784.

Assessment of Natural Language Processing of Electronic Health Records to Measure Goals-of-Care Discussions as a Clinical Trial Outcome.

Importance: Many 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. Objective: To 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 Participants: This 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 Measures: Main 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. Results: A 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 Relevance: In 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.

Patient and Clinician Recommendations to Improve Communication and Understanding of Lung Cancer Screening Results.

BACKGROUND: Patient understanding of chest low-dose CT (LDCT) scan results for lung cancer screening (LCS) may impact outcomes. RESEARCH QUESTION: What are patient- and clinician-identified gaps in understanding and communication of LCS results and how might communication be improved through a patient-oriented tool? STUDY DESIGN AND METHODS: We performed a mixed-methods study of participants recruited from a multisite LCS program to understand knowledge gaps after receiving LCS results and to guide development of a commonly asked questions (CAQ) after LCS information sheet. Initial patient surveys assessed understanding and reactions to LCS results (n = 190). We then conducted patient interviews and focus group discussions (n = 31) to understand experiences receiving LDCT scan results and reactions to results letters and the proposed CAQ; we also interviewed clinicians (n = 6) for feedback on these resources. We summarized survey responses and used thematic analysis to identify major themes in focus groups and interviews. RESULTS: Of 190 survey respondents (43% response rate), although 88% agreed that they "understood" their LCS results, only 55% reported understanding what a lung nodule is. Approximately two-thirds thought it was "very important" to receive more information regarding lung nodules and incidental lung and heart disease. In interviews and focus groups, although patients believed that brief results letters for normal LDCT scan results generally were acceptable, most found letters explaining abnormal LDCT scan and incidental findings to be concerning and not a substitute for discussion with their clinician. Nearly all patients expressed that the CAQ sheet provided helpful information on nodules, results reporting and incidental findings, and helped them form questions to ask their clinicians. INTERPRETATION: We identified patient-reported information needs regarding LCS results and developed a CAQ information sheet that was refined with patient and clinician input. The CAQ may represent a simple and feasible way to improve LCS results reporting and to augment clinician-patient discussions.

Predictors of Documented Goals-of-Care Discussion for Hospitalized Patients With Chronic Illness.

CONTEXT: Goals-of-care discussions are important for patient-centered care among hospitalized patients with serious illness. However, there are little data on the occurrence, predictors, and timing of these discussions. OBJECTIVES: To examine the occurrence, predictors, and timing of electronic health record (EHR)-documented goals-of-care discussions for hospitalized patients. METHODS: This retrospective cohort study used natural language processing (NLP) to examine EHR-documented goals-of-care discussions for adults with chronic life-limiting illness or age ≥80 hospitalized 2015-2019. The primary outcome was NLP-identified documentation of a goals-of-care discussion during the index hospitalization. We used multivariable logistic regression to evaluate associations with baseline characteristics. RESULTS: Of 16,262 consecutive, eligible patients without missing data, 5,918 (36.4%) had a documented goals-of-care discussion during hospitalization; approximately 57% of these discussions occurred within 24 hours of admission. In multivariable analysis, documented goals-of-care discussions were more common for women (OR=1.26, 95%CI 1.18-1.36), older patients (OR=1.04 per year, 95%CI 1.03-1.04), and patients with more comorbidities (OR=1.11 per Deyo-Charlson point, 95%CI 1.10-1.13), cancer (OR=1.88, 95%CI 1.72-2.06), dementia (OR=2.60, 95%CI 2.29-2.94), higher acute illness severity (OR=1.12 per National Early Warning Score point, 95%CI 1.11-1.14), or prior advance care planning documents (OR=1.18, 95%CI 1.08-1.30). Documentation of these discussions was less common for racially or ethnically minoritized patients (OR=0.823, 95%CI 0.75-0.90). CONCLUSION: Among hospitalized patients with serious illness, documented goals-of-care discussions identified by NLP were more common among patients with older age and increased burden of acute or chronic illness, and less common among racially or ethnically minoritized patients. This suggests important disparities in goals-of-care discussions.

Palliative Care Early in the Care Continuum among Patients with Serious Respiratory Illness: An Official ATS/AAHPM/HPNA/SWHPN Policy Statement.

Background: Patients with serious respiratory illness and their caregivers suffer considerable burdens, and palliative care is a fundamental right for anyone who needs it. However, the overwhelming majority of patients do not receive timely palliative care before the end of life, despite robust evidence for improved outcomes. Goals: This policy statement by the American Thoracic Society (ATS) and partnering societies advocates for improved integration of high-quality palliative care early in the care continuum for patients with serious respiratory illness and their caregivers and provides clinicians and policymakers with a framework to accomplish this. Methods: An international and interprofessional expert committee, including patients and caregivers, achieved consensus across a diverse working group representing pulmonary-critical care, palliative care, bioethics, health law and policy, geriatrics, nursing, physiotherapy, social work, pharmacy, patient advocacy, psychology, and sociology. Results: The committee developed fundamental values, principles, and policy recommendations for integrating palliative care in serious respiratory illness care across seven domains: 1) delivery models, 2) comprehensive symptom assessment and management, 3) advance care planning and goals of care discussions, 4) caregiver support, 5) health disparities, 6) mass casualty events and emergency preparedness, and 7) research priorities. The recommendations encourage timely integration of palliative care, promote innovative primary and secondary or specialist palliative care delivery models, and advocate for research and policy initiatives to improve the availability and quality of palliative care for patients and their caregivers. Conclusions: This multisociety policy statement establishes a framework for early palliative care in serious respiratory illness and provides guidance for pulmonary-critical care clinicians and policymakers for its proactive integration.

Improving communication about goals of care for hospitalized patients with serious illness: Study protocol for two complementary randomized trials.

BACKGROUND: 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. METHODS: 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. OUTCOMES: 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. CONCLUSIONS: 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. CLINICAL TRIALS REGISTRATION: STUDY00007031-A and STUDY00007031-B.

Seriously Ill Patients' Prioritized Goals and Their Clinicians' Perceptions of Those Goals.

CONTEXT: Seriously ill patients whose prioritized healthcare goals are understood by their clinicians are likely better positioned to receive goal-concordant care. OBJECTIVES: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.