Review of interventions that improve uptake of lung cancer screening: a cataloging of strategies that have been shown to work (or not).

TOPIC OF IMPORTANCE: Lung cancer screening (LCS) has the potential to decrease mortality from lung cancer by 20%. Yet, more than a decade since LCS was established as an evidence-based practice, < 20% of the eligible population in the US has been screened. This review focuses on critically appraising interventions that have been designed to increase the initial uptake of LCS, including how they address known barriers to LCS and their effectiveness in overcoming these barriers. REVIEW FINDINGS: Studies were categorized based on the primary barriers which they addressed: 1) identifying eligible patients (including enhancing awareness through smoking history collection, outreach, and education), 2) SDM-related interventions, and 3) patient navigation interventions. Four of the studies included multi-component interventions, which often included patient navigation as one of the components. Overall, the effectiveness of the studies reviewed at improving LCS uptake was generally modest and was limited by the multi-level barriers that need to be overcome. Multi-component interventions were generally more effective at improving LCS uptake but most studies still had relatively low completion of screening. SUMMARY: Improving uptake of LCS requires learning from prior interventions to design multi-level interventions that address barriers to LCS at key steps and identifying which components of these interventions are effective and generalizable.

Tackling Guideline Non-concordance: Primary Care Barriers to Incorporating Life Expectancy into Lung Cancer Screening Decision-Making-A Qualitative Study.

BACKGROUND: Primary care providers (PCPs) are often the first point of contact for discussing lung cancer screening (LCS) with patients. While guidelines recommend against screening people with limited life expectancy (LLE) who are less likely to benefit, these patients are regularly referred for LCS. OBJECTIVE: We sought to understand barriers PCPs face to incorporating life expectancy into LCS decision-making for patients who otherwise meet eligibility criteria, and how a hypothetical point-of-care tool could support patient selection. DESIGN: Qualitative study based on semi-structured telephone interviews. PARTICIPANTS: Thirty-one PCPs who refer patients for LCS, from six Veterans Health Administration facilities. APPROACH: We thematically analyzed interviews to understand how PCPs incorporated life expectancy into LCS decision-making and PCPs' receptivity to a point-of-care tool to support patient selection. Final themes were organized according to the Cabana et al. framework Why Don't Physicians Follow Clinical Practice Guidelines, capturing the influence of clinician knowledge, attitudes, and behavior on LCS appropriateness determinations. KEY RESULTS: PCP referrals to LCS for patients with LLE were influenced by limited knowledge of the life expectancy threshold at which patients are less likely to benefit from LCS, discomfort estimating life expectancy, fear of missing cancer at the point of early detection, and prioritization of factors such as quality of life, patient values, clinician-patient relationship, and family support. PCPs were receptive to a decision support tool to inform and communicate LCS appropriateness decisions if easy to use and integrated into clinical workflows. CONCLUSIONS: Our study suggests knowledge gaps and attitudes may drive decisions to offer screening despite LLE, a behavior counter to guideline recommendations. Integrating a LCS decision support tool that incorporates life expectancy within the electronic medical record and existing clinical workflows may be one acceptable solution to improve guideline concordance and increase confidence in selecting high benefit patients for LCS.

"It Can't Hurt!": Why Many Patients With Limited Life Expectancy Decide to Accept Lung Cancer Screening.

PURPOSE: Lung cancer screening (LCS) has less benefit and greater potential for iatrogenic harm among people with multiple comorbidities and limited life expectancy. Yet, such individuals are more likely to undergo screening than healthier LCS-eligible people. We sought to understand how patients with marginal LCS benefit conceptualize their health and make decisions regarding LCS. METHODS: We interviewed 40 people with multimorbidity and limited life expectancy, as determined by high Care Assessment Need scores, which predict 1-year risk of hospitalization or death. Patients were recruited from 6 Veterans Health Administration facilities after discussing LCS with their clinician. We conducted a thematic analysis using constant comparison to explore factors that influence LCS decision making. RESULTS: Patients commonly held positive beliefs about screening and perceived LCS to be noninvasive. When posed with hypothetical scenarios of limited benefit, patients emphasized the nonlongevity benefits of LCS (eg, peace of mind, planning for the future) and generally did not consider their health status or life expectancy when making decisions regarding LCS. Most patients were unaware of possible additional evaluations or treatment of screen-detected findings, but when probed further, many expressed concerns about the potential need for multiple evaluations, referrals, or invasive procedures. CONCLUSIONS: Patients in this study with multimorbidity and limited life expectancy were unaware of their greater risk of potential harm when accepting LCS. Given patient trust in clinician recommendations, it is important that clinicians engage patients with marginal LCS benefit in shared decision making, ensuring that their values of desiring more information about their health are weighed against potential harms from further evaluations.

What Goes into Patient Selection for Lung Cancer Screening? Factors Associated with Clinician Judgments of Suitability for Screening.

Rationale: Achieving the net benefit of lung cancer screening (LCS) depends on optimizing patient selection. Objective: To identify factors associated with clinician assessments that a patient was unlikely to benefit from LCS ("LCS-inappropriate") because of comorbidities or limited life expectancy. Methods: Retrospective analysis of patients assessed for LCS at 30 Veterans Health Administration facilities from January 1, 2015 to February 1, 2021. We conducted hierarchical mixed-effects logistic regression analyses to determine factors associated with clinicians' designations of LCS inappropriateness (primary outcome), accounting for 3-year predicted probability (i.e., competing risk) of non-lung cancer death. Measurements and Main Results: Among 38,487 LCS-eligible patients, 1,671 (4.3%) were deemed LCS-inappropriate by clinicians, whereas 4,383 (11.4%) had an estimated 3-year competing risk of non-lung cancer death greater than 20%. Patients with higher competing risks of non-lung cancer death were more likely to be deemed LCS-inappropriate (odds ratio [OR], 2.66; 95% confidence interval [CI], 2.32-3.05). Older patients (ages 75-80; OR, 1.45; 95% CI, 1.18-1.78) and those with interstitial lung disease (OR, 1.98; 95% CI, 1.51-2.59) were more likely to be deemed LCS-inappropriate than would be explained by competing risk of non-lung cancer death, whereas patients currently smoking (OR, 0.65; 95% CI, 0.58-0.73) were less likely to be deemed LCS-inappropriate, suggesting that clinicians over- or underweighted these factors. The probability of being deemed LCS-inappropriate varied from 0.4% to 74%, depending on the clinician making the assessment (median OR, 3.07; 95% CI, 2.89-3.25). Conclusion: Concerningly, the likelihood that a patient is deemed LCS-inappropriate is more strongly associated with the clinician making the assessment than with patient characteristics. Patient selection may be optimized by providing decision support to help clinicians assess net LCS benefit.

National Survey of Lung Cancer Screening Practices in Veterans Health Administration Facilities.

INTRODUCTION: Lung cancer screening can save lives through the early detection of lung cancer, and professional societies recommend key lung cancer screening program components to ensure high-quality screening. Yet, little is known about the key components that comprise the various screening program models in routine clinical settings. The objective was to compare the utilization of these key components across centralized, hybrid, and decentralized lung cancer screening programs. METHODS: The survey was designed to identify current structures and processes of lung cancer screening programs. It was administered electronically to Veterans Health Administration facilities nationally (N=122) between August and December 2021. Results were analyzed between March and August 2022 and stratified by self-identified lung cancer screening program type, and we tested the hypothesis that centralized screening programs would be more likely to have implemented practices that support lung cancer screening, followed by hybrid and decentralized programs, using the Cochran-Armitage trend test. RESULTS: Overall, 69 (56.6%) facilities completed the survey, and respondents were lung cancer screening coordinators (39.1%), pulmonologists (33.3%), and oncologists (10.1%). Facilities most frequently self-identified as having a centralized (37.7%) program model, followed by identifying as having hybrid (30.4%) and decentralized (20.3%) programs. There was varying implementation of practices to support lung cancer screening, with hybrid and decentralized programs less likely to have lung cancer screening registries, lung cancer screening steering committees, or dedicated lung cancer screening coordinators. CONCLUSIONS: Although there is overlap between the components of various lung cancer screening program types, centralized programs more frequently implemented practices before the initial screening to support lung cancer screening. This work provides a path for future investigations to identify which lung cancer screening practices are effective to improve lung cancer screening outcomes, which could help inform implementation in settings with limited resources.

Factors Associated With Declining Lung Cancer Screening After Discussion With a Physician in a Cohort of US Veterans.

Importance: Lung cancer screening (LCS) is underused in the US, particularly in underserved populations, and little is known about factors associated with declining LCS. Guidelines call for shared decision-making when LCS is offered to ensure informed, patient-centered decisions. Objective: To assess how frequently veterans decline LCS and examine factors associated with declining LCS. Design, Setting, and Participants: This retrospective cohort study included LCS-eligible US veterans who were offered LCS between January 1, 2013, and February 1, 2021, by a physician at 1 of 30 Veterans Health Administration (VHA) facilities that routinely used electronic health record clinical reminders documenting LCS eligibility and veterans' decisions to accept or decline LCS. Data were obtained from the Veterans Affairs (VA) Corporate Data Warehouse or Medicare claims files from the VA Information Resource Center. Main Outcomes and Measures: The main outcome was documentation, in clinical reminders, that veterans declined LCS after a discussion with a physician. Logistic regression analyses with physicians and facilities as random effects were used to assess factors associated with declining LCS compared with agreeing to LCS. Results: Of 43 257 LCS-eligible veterans who were offered LCS (mean [SD] age, 64.7 [5.8] years), 95.9% were male, 84.2% were White, and 37.1% lived in a rural zip code; 32.0% declined screening. Veterans were less likely to decline LCS if they were younger (age 55-59 years: odds ratio [OR], 0.69; 95% CI, 0.64-0.74; age 60-64 years: OR, 0.80; 95% CI, 0.75-0.85), were Black (OR, 0.80; 95% CI, 0.73-0.87), were Hispanic (OR, 0.62; 95% CI, 0.49-0.78), did not have to make co-payments (OR, 0.92; 95% CI, 0.85-0.99), or had more frequent VHA health care utilization (outpatient: OR, 0.70; 95% CI, 0.67-0.72; emergency department: OR, 0.86; 95% CI, 0.80-0.92). Veterans were more likely to decline LCS if they were older (age 70-74 years: OR, 1.27; 95% CI, 1.19-1.37; age 75-80 years: OR, 1.93; 95% CI, 1.73-2.17), lived farther from a VHA screening facility (OR, 1.06; 95% CI, 1.03-1.08), had spent more days in long-term care (OR, 1.13; 95% CI, 1.07-1.19), had a higher Elixhauser Comorbidity Index score (OR, 1.04; 95% CI, 1.03-1.05), or had specific cardiovascular or mental health conditions (congestive heart failure: OR, 1.25; 95% CI, 1.12-1.39; stroke: OR, 1.14; 95% CI, 1.01-1.28; schizophrenia: OR, 1.87; 95% CI, 1.60-2.19). The physician and facility offering LCS accounted for 19% and 36% of the variation in declining LCS, respectively. Conclusions and Relevance: In this cohort study, older veterans with serious comorbidities were more likely to decline LCS and Black and Hispanic veterans were more likely to accept it. Variation in LCS decisions was accounted for more by the facility and physician offering LCS than by patient factors. These findings suggest that shared decision-making conversations in which patients play a central role in guiding care may enhance patient-centered care and address disparities in LCS.

Invasive Procedures and Associated Complications After Initial Lung Cancer Screening in a National Cohort of Veterans.

BACKGROUND: Little is known about rates of invasive procedures and associated complications after lung cancer screening (LCS) in nontrial settings. RESEARCH QUESTION: What are the frequency of invasive procedures, complication rates, and factors associated with complications in a national sample of veterans screened for lung cancer? STUDY DESIGN AND METHODS: We conducted a retrospective cohort analysis of veterans who underwent LCS in any Veterans Health Administration (VA) facility between 2013 and 2019 and identified veterans who underwent invasive procedures within 10 months of initial LCS. The primary outcome was presence of a complication within 10 days after an invasive procedure. We conducted hierarchical mixed-effects logistic regression analyses to determine patient- and facility-level factors associated with complications resulting from an invasive procedure. RESULTS: Our cohort of 82,641 veterans who underwent LCS was older, more racially diverse, and had more comorbidities than National Lung Screening Trial (NLST) participants. Overall, 1,741 veterans (2.1%) underwent an invasive procedure after initial screening, including 856 (42.3%) bronchoscopies, 490 (24.2%) transthoracic needle biopsies, and 423 (20.9%) thoracic surgeries. Among veterans who underwent procedures, 151 (8.7%) experienced a major complication (eg, respiratory failure, prolonged hospitalization) and an additional 203 (11.7%) experienced an intermediate complication (eg, pneumothorax, pleural effusion). Veterans who underwent thoracic surgery (OR, 7.70; 95% CI, 5.48-10.81), underwent multiple nonsurgical procedures (OR, 1.49; 95% CI, 1.15-1.92), or carried a dementia diagnosis (OR, 3.91; 95% CI, 1.79-8.52) were more likely to experience complications. Invasive procedures were performed less often than in the NLST (2.1% vs 4.2%), but veterans were more likely to experience complications after each type of procedure. INTERPRETATION: These findings may reflect a higher threshold to perform procedures in veteran populations with multiple comorbidities and higher risks of complications. Future work should focus on optimizing the identification of patients whose chance of benefit likely outweighs the complication risks.

Adherence to Follow-up Testing Recommendations in US Veterans Screened for Lung Cancer, 2015-2019.

Importance: Lung cancer screening (LCS) can reduce lung cancer mortality with close follow-up and adherence to management recommendations. Little is known about factors associated with adherence to LCS in real-world practice, with data limited to case series from selected LCS programs. Objective: To analyze adherence to follow-up based on standardized follow-up recommendations in a national cohort and to identify factors associated with delayed or absent follow-up. Design, Setting, and Participants: This retrospective cohort study was conducted in Veterans Health Administration (VHA) facilities across the US. Veterans were screened for lung cancer between 2015 to 2019 with sufficient follow-up time to receive recommended evaluation. Patient- and facility-level logistic regression analyses were performed. Data were analyzed from November 26, 2019, to December 16, 2020. Main Outcomes and Measures: Receipt of the recommended next step after initial LCS according to Lung CT Screening Reporting & Data System (Lung-RADS) category, as captured in VHA or Medicare claims. Results: Of 28 294 veterans (26 835 [94.8%] men; 21 969 individuals [77.6%] were White; mean [SD] age, 65.2 [5.5] years) who had an initial LCS examination, 17 863 veterans (63.1%) underwent recommended follow-up within the expected timeframe, whereas 3696 veterans (13.1%) underwent late evaluation, and 4439 veterans (15.7%) had no apparent evaluation. Facility-level differences were associated with 9.2% of the observed variation in rates of late or absent evaluation. In multivariable-adjusted models, Black veterans (odds ratio [OR], 1.19 [95% CI, 1.10-1.29]), veterans with posttraumatic stress disorder (OR, 1.13 [95% CI, 1.03-1.23]), veterans with substance use disorders (OR, 1.11 [95% CI, 1.01-1.22]), veterans with lower income (OR, 0.88 [95% CI, 0.79-0.98]), and those living at a greater distance from a VHA facility (OR, 1.06 [95% CI, 1.02-1.10]) were more likely to experience delayed or no follow-up; veterans with higher risk findings (Lung-RADS category 4 vs Lung-RADS category 1: OR, 0.35 [95% CI, 0.28-0.43]) and those screened in high LCS volume facilities (OR, 0.38 [95% CI, 0.21-0.67]) or academic facilities (OR, 0.86 [95% CI, 0.80-0.92]) were less likely to experience delayed or no follow-up. In sensitivity analyses, varying how stringently adherence was defined, expected evaluation ranged from 14 486 veterans (49.7%) under stringent definitions to 20 578 veterans (78.8%) under liberal definitions. Conclusions and Relevance: In this cohort study that captured follow-up care from the integrated VHA health care system and Medicare, less than two-thirds of patients received timely recommended follow-up after initial LCS, with higher risk of delayed or absent follow-up among marginalized populations, such as Black individuals, individuals with mental health disorders, and individuals with low income, that have long experienced disparities in lung cancer outcomes. Future work should focus on identifying facilities that promote high adherence and disseminating successful strategies to promote equity in LCS among marginalized populations.

Differences in Family Involvement in the Bedside Care of Patients in the ICU Based on Self-Identified Race.

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

Access to Lung Cancer Screening in the Veterans Health Administration: Does Geographic Distribution Match Need in the Population?

BACKGROUND: Studies show uneven access to Medicare-approved lung cancer screening (LCS) programs across the United States. The Veterans Health Administration (VA), the largest national US integrated health system, is potentially well positioned to coordinate LCS services across regional units to ensure that access matches distribution of need nationally. RESEARCH QUESTION: To what extent does LCS access (considering both VA and partner sites) and use match the distribution of eligible Veterans at state and regional levels? METHODS: In this retrospective analysis, we identified LCS examinations in VA facilities between 2013 and 2019 from the VA Corporate Data Warehouse and plotted VA facilities with LCS geographically. We compared estimated LCS rates (unique Veterans screened per LCS-eligible population) across states and VA regional units. Finally, we assessed whether the VA's new partnership with the GO2 Foundation for Lung Cancer (which includes more than 750 LCS centers) closes geographic gaps in LCS access. RESULTS: We identified 71,898 LCS examinations in 96 of 139 (69.1%) VA facilities in 44 states between 2013 and 2019, with substantial variation across states (0-8 VA LCS facilities per state). Screening rates among eligible Veterans in the population varied more than 30-fold across regional networks (rate ratio, 33.6; 95% CI, 30.8-36.7 for VA New England vs Veterans Integrated Service Network 4), with weak correlation between eligible populations and LCS rates (coefficient, -0.30). Partnering with the GO2 Foundation for Lung Cancer expands capacity and access (eg, all states now have ≥ 1 VA or partner LCS site), but 9 of the 12 states with the highest proportions of rural Veterans still have ≤ 3 total LCS facilities. INTERPRETATION: Disparities in LCS access exist based on where Veterans live, particularly for rural Veterans, even after partnering with the GO2 Foundation for Lung Cancer. The nationally integrated VA system has an opportunity to leverage regional resources to distribute and coordinate LCS services better to ensure equitable access.

Development and Validation of Algorithms to Identify Pulmonary Arterial Hypertension in Administrative Data.

BACKGROUND: Pulmonary arterial hypertension (PAH) is a rare disease, and much of our understanding stems from single-center studies, which are limited by sample size and generalizability. Administrative data offer an appealing opportunity to inform clinical, research, and quality improvement efforts for PAH. Yet, currently no standardized, validated method exists to distinguish PAH from other subgroups of pulmonary hypertension (PH) within this data source. RESEARCH QUESTION: Can a collection of algorithms be developed and validated to detect PAH in administrative data in two diverse settings: all Veterans Health Administration (VA) hospitals and Boston Medical Center (BMC), a PAH referral center. STUDY DESIGN AND METHODS: In each setting, we identified all adult patients with incident PH from 2006 through 2017 using International Classification of Diseases PH diagnosis codes. From this baseline cohort of all PH subgroups, we sequentially applied the following criteria: diagnosis codes for PAH-associated conditions, procedure codes for right heart catheterizations (RHCs), and pharmacy claims for PAH-specific therapy. We then validated each algorithm using a gold standard review of primary clinical data and calculated sensitivity, specificity, positive predictive values (PPVs), and negative predictive values. RESULTS: From our baseline cohort, we identified 12,012 PH patients in all VA hospitals and 503 patients in BMC. Sole use of PH diagnosis codes performed poorly in identifying PAH (PPV, 16.0% in VA hospitals and 36.0% in BMC). The addition of PAH-associated conditions to the algorithm modestly improved PPV. The best performing algorithm required ICD diagnosis codes, RHC codes, and PAH-specific therapy (VA hospitals: specificity, 97.1%; PPV, 70.0%; BMC: specificity, 95.0%; PPV, 86.0%). INTERPRETATION: This set of validated algorithms to identify PAH in administrative data can be used by the PAH scientific and clinical community to enhance the reliability and value of research findings, to inform quality improvement initiatives, and ultimately to improve health for PAH patients.

Storytelling in the Early Bereavement Period to Reduce Emotional Distress Among Surrogates Involved in a Decision to Limit Life Support in the ICU: A Pilot Feasibility Trial.

OBJECTIVES: Surrogate decision makers involved in decisions to limit life support for an incapacitated patient in the ICU have high rates of adverse emotional health outcomes distinct from normal processes of grief and bereavement. Narrative self-disclosure (storytelling) reduces emotional distress after other traumatic experiences. We sought to assess the feasibility, acceptability, and tolerability of storytelling among bereaved surrogates involved in a decision to limit life support in the ICU. DESIGN: Pilot single-blind trial. SETTING: Five ICUs across three hospitals within a single health system between June 2013 and November 2014. SUBJECTS: Bereaved surrogates of ICU patients. INTERVENTIONS: Storytelling and control conditions involved printed bereavement materials and follow-up assessments. Storytelling involved a single 1- to 2-hour home or telephone visit by a trained interventionist who elicited the surrogate's story. MEASUREMENTS AND MAIN RESULTS: The primary outcomes were feasibility (rates of enrollment, intervention receipt, 3- and 6-mo follow-up), acceptability (closed and open-ended end-of-study feedback at 6 mo), and tolerability (acute mental health services referral). Of 53 eligible surrogates, 32 (60%) consented to treatment allocation. Surrogates' mean age was 55.5 (SD, 11.8), and they were making decisions for their parent (47%), spouse (28%), sibling (13%), child (3%), or other relation (8%). We allocated 14 to control and 18 to storytelling, 17 of 18 (94%) received storytelling, 14 of 14 (100%) and 13 of 14 (94%) control subjects and 16 of 18 (89%) and 17 of 18 (94%) storytelling subjects completed their 3- and 6-month telephone assessments. At 6 months, nine of 13 control participants (69%) and 16 of 17 storytelling subjects (94%) reported feeling "better" or "much better," and none felt "much worse." One control subject (8%) and one storytelling subject (6%) said that the study was burdensome, and one control subject (8%) wished they had not participated. No subjects required acute mental health services referral. CONCLUSION: A clinical trial of storytelling in this study population is feasible, acceptable, and tolerable.

Acutely Bereaved Surrogates' Stories About the Decision to Limit Life Support in the ICU.

OBJECTIVES: Participating in a decision to limit life support for a loved one in the ICU is associated with adverse mental health consequences for surrogate decision makers. We sought to describe acutely bereaved surrogates' experiences surrounding this decision. DESIGN: Qualitative analysis of interviews with surrogates approximately 4 weeks after a patient's death in one of six ICUs at four hospitals in Pittsburgh, PA. SUBJECTS: Adults who participated in decisions about life support in the ICU. INTERVENTIONS: Not applicable. MEASUREMENTS AND MAIN RESULTS: We collected participant demographics, previous advance care planning, and decision control preferences. We used qualitative content analysis of transcribed interviews to identify themes in surrogates' experiences. The 23 participants included the spouse (n = 7), child/stepchild (7), sibling (5), parent (3), or other relation (1) of the deceased patient. Their mean age was 55, 61% were women, all were whites, 74% had previous treatment preference discussions with the patient, and 43% of patients had written advance directives. Fifteen of 23 surrogates (65%) preferred an active decision-making role, 8 of 23 (35%) preferred to share responsibility with the physician, and no surrogates preferred a passive role. Surrogates report that key stressors in the ICU are the uncertainty and witnessed or empathic suffering. These factors contributed to surrogates' sense of helplessness in the ICU. Involvement in the decision to limit life support allowed surrogates to regain a sense of agency by making a decision consistent with the patient's wishes and values, counteracting surrogates' helplessness and ending the uncertainty and suffering. CONCLUSIONS: In this all-white sample of surrogates with nonpassive decision control preferences from a single US region, participating in decision making allowed surrogates to regain control, counteract feelings of helplessness, and end their empathic suffering. Although previous research highlighted the distress caused by participation in a decision to limit life support, the act of decision making may, counterintuitively, help some surrogates cope with the experience.