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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., Competing Interests: Financial/Nonfinancial Disclosures None declared., (Copyright © 2024 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Objective: Distress at the end of life in the intensive care unit (ICU) is common. We reviewed the evidence guiding symptom assessment, withdrawal of mechanical ventilation (WMV) process, support for the ICU team, and symptom management among adults, and specifically older adults, at end of life in the ICU., Setting and Design: Systematic search of published literature (January 1990-December 2021) pertaining to WMV at end of life among adults in the ICU setting using PubMed, Embase, and Web of Science. Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines were followed., Participants: Adults (age 18 and over) undergoing WMV in the ICU., Measurements: Study quality was assessed using the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach., Results: Out of 574 articles screened, 130 underwent full text review, and 74 were reviewed and assessed for quality. The highest quality studies pertained to use of validated symptom scales during WMV. Studies of the WMV process itself were generally lower quality. Support for the ICU team best occurs via structured communication and social supports. Dyspnea is the most distressing symptom, and while high quality evidence supports the use of opiates, there is limited evidence to guide implementation of their use for specific patients., Conclusion: High quality studies support some practices in palliative WMV, while gaps in evidence remain for the WMV process, supporting the ICU team, and medical management of distress. Future studies should rigorously compare WMV processes and symptom management to reduce distress at end of life., (Copyright © 2023 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Although trust is central to successful physician-family relationships in ICUs, little is known about how to promote surrogates' trust of ICU physicians in this setting., Research Question: Does the conduct of family conferences and physicians' use of shared decision-making (SDM) within family conferences impact surrogates' trust in the physician?, Study Design and Methods: A mixed-methods secondary analysis was done of a multicenter prospective cohort study of 369 surrogate decision-makers of 204 decisionally incapacitated patients at high risk of death or severe functional impairment within 13 ICUs at six US medical centers between 2008 and 2012. Surrogates completed the Abbreviated Wake Forest Physician Trust Scale (range, 5-25) before and after an audio-recorded family conference conducted within 5 days of ICU admission. We qualitatively coded transcribed conferences to determine physicians' use of five SDM behaviors: discussing surrogate's role, explaining medical condition and prognosis, providing emotional support, assessing understanding, and eliciting patient's values and preferences. Using multivariable linear regression with adjustment for clustering, we assessed whether surrogates' trust in the physician increased after the family meeting; we also examined whether the number of SDM behaviors used by physicians during the family meeting impacted trust scores., Results: In adjusted models, conduct of a family meeting was associated with increased trust (average change, pre- to post family meeting: 0.91 point [95% CI, 0.4-1.4; P < .01]). Every additional element of SDM used during the family meeting, including discussing surrogate's role, providing emotional support, assessing understanding, and eliciting patient's values and preferences, was associated with a 0.37-point increase in trust (95% CI, 0.08-0.67; P = .01). If all four elements were used, trust increased by 1.48 points. Explaining medical condition or prognosis was observed in nearly every conference (98.5%) and was excluded from the final model., Interpretation: The conduct of family meetings and physicians' use of SDM behaviors during meetings were both associated with increases in surrogates' trust in the treating physician., (Copyright © 2022 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Background: Each year, approximately one million older adults die in American intensive care units (ICUs) or survive with significant functional impairment. Inadequate symptom management, surrogates' psychological distress and inappropriate healthcare use are major concerns. Pioneering work by Dr. J. Randall Curtis paved the way for integrating palliative care (PC) specialists to address these needs, but convincing proof of efficacy has not yet been demonstrated., Design: We will conduct a multicenter patient-randomized efficacy trial of integrated specialty PC (SPC) vs. usual care for 500 high-risk ICU patients over age 60 and their surrogate decision-makers from five hospitals in Pennsylvania., Intervention: The intervention will follow recommended best practices for inpatient PC consultation. Patients will receive care from a multidisciplinary SPC team within 24 hours of enrollment that continues until hospital discharge or death. SPC clinicians will meet with patients, families, and the ICU team every weekday. SPC and ICU clinicians will jointly participate in proactive family meetings according to a predefined schedule. Patients in the control arm will receive routine ICU care., Outcomes: Our primary outcome is patient-centeredness of care, measured using the modified Patient Perceived Patient-Centeredness of Care scale. Secondary outcomes include surrogates' psychological symptom burden and health resource utilization. Other outcomes include patient survival, as well as interprofessional collaboration. We will also conduct prespecified subgroup analyses using variables such as PC needs, measured by the Needs of Social Nature, Existential Concerns, Symptoms, and Therapeutic Interaction scale., Conclusions: This trial will provide robust evidence about the impact of integrating SPC with critical care on patient, family, and health system outcomes., Competing Interests: Conflicts of Interests See relevant ICMJE forms., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Severe Acute Brain Injury (SABI) is neurologically devastating, and surrogates for these patients may struggle with particularly complex decisions due to substantial prognostic uncertainty., Objectives: To compare anxiety and depression symptoms over time between SABI surrogates and non-SABI surrogates for patients requiring prolonged mechanical ventilation (PMV)., Methods: We conducted a secondary analysis of the data from a multicenter randomized trial of a decision aid intervention for surrogates of adults experiencing PMV. Eligible patients were enrolled from medical, surgical, trauma, cardiac, and neurologic intensive care units (ICUs). ICU admitting diagnoses were used to identify patients experiencing SABI. We compared anxiety and depression symptoms as measured by the Hospital Anxiety and Depression Scale score 6 months after trial enrollment between surrogates of patients with SABI and surrogates of patients experiencing PMV for other reasons., Results: Our analysis included 206 patients, 60 (29%) with SABI and 146 (71%) without SABI, and their primary surrogate decision makers. After adjusting for potential confounders including surrogate demographics, surrogate financial distress, patient severity of illness baseline GCS, and patient health status at 6 months, we found that surrogates of patients experiencing SABI had higher symptoms of anxiety and depression than surrogates of non-SABI patients (adjusted mean difference 3.6, 95% CI 1.2-6.0)., Conclusion: Surrogates of PMV patients with SABI experience persistently elevated anxiety and depression symptoms over 6 months compared to surrogates of PMV patients without SABI. Further work is needed to understand contributors to prolonged distress in this higher risk population., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Although many patients with critical illness may benefit from involvement of palliative care specialists, adoption of these services in the intensive care unit (ICU) is variable., Objective: To characterize reasons for variable buy-in for specialty palliative care in the ICU, and identify factors associated with routine involvement of specialists in appropriate cases., Methods: Qualitative study using in-depth, semi-structured interviews with ICU attendings, nurses, and palliative care clinicians, purposively sampled from eight ICUs (medical, surgical, cardiothoracic, neurological) with variable use of palliative care services within two urban, academic medical centers. Interviews were transcribed and coded using an iterative and inductive approach with constant comparison., Results: We identified three types of specialty palliative care adoption in ICUs, representing different phases of buy-in. The "nascent" phase was characterized by the need for education about palliative care services and clarification of which patients may be appropriate for involvement. During the key "transitional" phase, use of specialists depended on development of "comfort and trust", which centered on four aspects of the ICU-palliative care clinician relationship: 1) increasing familiarity between clinicians; 2) navigating shared responsibility with primary clinicians; 3) having a collaborative approach to care; and 4) having successful experiences. In the "mature" phase, ICU and palliative care clinicians worked to strengthen their existing collaboration, but further adoption was limited by the availability and resources of the palliative care team., Conclusion: This conceptual framework identifying distinct phases of adoption may assist institutions aiming to foster sustained adoption of specialty palliative care in an ICU setting., (Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

When assuming care for a seriously ill hospitalized patient, we should find documentation of previous decisions about goals of care so that our conversation takes advantage of previous discussions and reduces decision-making burden on the patient, particularly when the patient is clinically declining and time is short. This article presents a framework to help clinicians incorporate prior goals of care conversations into decision-making for an acutely ill patient. When there is strong evidence that a previous decision still applies, clinicians should, after a brief check-in about the previous decision with the patient, then present a plan consistent with their previous decision as a default option, to which they can opt out. If there is less evidence of the basis for a previous decision, clinicians should explore the thinking behind the decision and, if there is clarity about patient preferences, propose a treatment plan. If there is conflict or uncertainty about the patient's preferences, clinicians should engage in a more comprehensive goals-of-care conversation, which involves exploring the patient's understanding of their illness, patient values, and reasonable treatment options, before offering a plan. By giving the patient the ability to opt out of a previous decision they made about goals of care, rather than another choice, we make it more likely that they will receive care consistent with their known wishes., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Context: Patients with advanced cancer often worry about dying. Less is known about the role of worry in decision making regarding future care., Objectives: To explore relationships between patients' worry about dying and their illness understanding, treatment preferences, and advance care planning (ACP)., Methods: This cross-sectional study used baseline data from a primary palliative care intervention trial. All participants had metastatic solid tumors. Using patients' response to I worry about dying from the Functional Assessment of Chronic Illness-Palliative Care survey instrument, univariate and multivariate analyses assessed associations with illness understanding, treatment preferences, and ACP., Results: Of 672 patients, 47% reported worrying about dying not at all, whereas 9.7% worried quite a bit or very much. In regression analysis, compared with patients who reported not worrying about dying, those who reported high levels of worry were more likely to describe themselves as terminally ill (adjusted odds ratio [AOR] = 1.98; 95% CI = 1.10-3.54; P = 0.021) and prefer life-extending therapy over symptom-focused care (AOR = 2.61; 95% CI = 1.30-5.22; P = 0.007). They were less likely to have completed an advance directive (AOR = 0.49; 95% CI = 0.25-0.94; P = 0.032). The same relationships were seen using patients' response to I feel scared about my future from the Herth Hope Index., Conclusion: Patients with advanced cancer who worry about dying are more likely to identify as terminally ill and desire life-extending treatment and are less likely to engage in ACP. Understanding how patients cope with worry and make medical decisions is important in providing quality care to these patients., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Palliative ventilator withdrawal (PVW) in the ICU is a common occurrence., Research Question: The goal of this study was to measure the rate of severe tachypnea as a proxy for dyspnea and to identify characteristics associated with episodes of tachypnea., Study Design and Methods: This study assessed a retrospective cohort of ICU patients from 2008 to 2012 mechanically ventilated at a single academic medical center who underwent PVW. The primary outcome of at least one episode of severe tachypnea (respiratory rate > 30 breaths/min) within 6 h after PVW was measured by using detailed physiologic and medical record data. Multivariable logistic regression was used to examine the association between patient and treatment characteristics with the occurrence of a severe episode of tachypnea post extubation., Results: Among 822 patients undergoing PVW, 19% and 30% had an episode of severe tachypnea during the 1-h and 6-h postextubation period, respectively. Within 1 h postextubation, patients with the following characteristics were more likely to experience tachypnea: no pre-extubation opiates (adjusted OR [aOR], 2.08; 95% CI, 1.03-4.19), lung injury (aOR, 3.33; 95% CI, 2.19-5.04), Glasgow Coma Scale score > 8 (aOR, 2.21; 95% CI, 1.30-3.77), and no postextubation opiates (aOR, 1.90; 95% CI, 1.19-3.00)., Interpretation: Up to one-third of ICU patients undergoing PVW experience severe tachypnea. Administration of pre-extubation opiates (anticipatory dosing) represents a key modifiable factor that may reduce poor symptom control., (Copyright © 2020 American College of Chest Physicians. All rights reserved.)

Background: Failure to deliver care near the end of life that reflects the needs, values and preferences of patients with advanced cancer remains a major shortcoming of our cancer care delivery system., Methods: A mixed-methods comparative effectiveness trial of in-person advance care planning (ACP) discussions versus web-based ACP is currently underway at oncology practices in Western Pennsylvania. Patients with advanced cancer and their caregivers are invited to enroll. Participants are randomized to either (1) in-person ACP discussions via face-to-face visits with a nurse facilitator following the Respecting Choices® Conversation Guide or (2) web-based ACP using the PREPARE for your care™ web-based ACP tool. The trial compares the effect of these two interventions on patient and family caregiver outcomes (engagement in ACP, primary outcome; ACP discussions; advance directive (AD) completion; quality of end-of-life (EOL) care; EOL goal attainment; caregiver psychological symptoms; healthcare utilization at EOL) and assesses implementation costs. Factors influencing ACP effectiveness are assessed via in-depth interviews with patients, caregivers and clinicians., Discussion: This trial will provide new and much-needed empirical evidence about two patient-facing ACP approaches that successfully overcome limitations of traditional written advance directives but entail very different investments of time and resources. It is innovative in using mixed methods to evaluate not only the comparative effectiveness of these approaches, but also the contexts and mechanisms influencing effectiveness. Data from this study will inform clinicians, payers and health systems seeking to adopt and scale the most effective and efficient ACP strategy in real-world oncology settings., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Introduction: Mediastinal lesions are uncommon; studies on their distribution are, in general, small and from a single institution. Furthermore, these studies are usually based on pathology or surgical databases and, therefore, miss many lesions that did not undergo biopsy or resection. Our aim was to identify the distribution of lesions in the mediastinum in a large international, multi-institutional cohort., Methods: At each participating institution, a standardized retrospective radiology database search was performed for interpretations of computed tomography, positron emission tomography-computed tomography, and magnetic resonance imaging scans including any of the following terms: "mediastinal nodule," "mediastinal lesion," "mediastinal mass," or "mediastinal abnormality" (2011-2014). Standardized data were collected. Statistical analysis was performed., Results: Among 3308 cases, thymomas (27.8%), benign mediastinal cysts (20.0%), and lymphomas (16.1%) were most common. The distribution of lesions varied among mediastinal compartments; thymomas (38.3%), benign cysts (16.8%), and neurogenic tumors (53.9%) were the most common lesions in the prevascular, visceral, and paravertebral mediastinum, respectively (p < 0.001). Mediastinal compartment was associated with age; patients with paravertebral lesions were the youngest (p < 0.0001). Mediastinal lesions differed by continent or country, with benign cysts being the most common mediastinal lesions in the People's Republic of China, thymomas in Europe, and lymphomas in North America and Israel (p < 0.001). Benign cysts, thymic carcinomas, and metastases were more often seen in larger hospitals, whereas lymphomas and thymic hyperplasia occurred more often in smaller hospitals (p < 0.01)., Conclusions: Our study confirmed that the spectrum and frequency of mediastinal lesions depend on mediastinal compartment and age. This information provides helpful demographic data and is important when considering the differential diagnosis of a mediastinal lesion., (Copyright © 2019 International Association for the Study of Lung Cancer. Published by Elsevier Inc. All rights reserved.)

Objective: To assess the psychometric properties of the 16-item Decisional Conflict Scale (DCS) in surrogate decision makers., Methods: With a sample of 472 surrogates from intensive care units in five academic medical centers across the United States, we performed the analysis in five phases to 1) model the congeneric structure with confirmatory factor analysis and assess 2) internal consistency reliability, 3) the unidimensional or global assessment, 4) factorial invariance across surrogate gender, and 5) individual item influence on the domains., Results: The congeneric model fit the data, with all factor loadings (0.577-0.955) statistically significant at p < 0.05. All subdomains had acceptable internal consistency (0.751-0.981). The bifactor model supported the sub-domains or the global construct as appropriate measurement models. The DCS demonstrated invariance for use across surrogate genders. The most difficult item for surrogates to complete was "This decision is easy for me to make" [MNSQ Infit/Outfit: 2.37/3.27] and the easiest item was "I have enough advice to make a choice" [0.70/0.67]., Conclusions: Overall, the DCS demonstrated good fit, and can be considered a valid and reliable tool to use with the surrogate population., Practice Implications: Measuring surrogate decisional conflict could be especially useful to determine how to improve the decision-making process., (Copyright © 2018 Elsevier B.V. All rights reserved.)

Background: The addition of specialty palliative care to standard oncology care improves outcomes for patients with advanced cancer and their caregivers, but many lack access to specialty care services. Primary palliative care-meaning basic palliative care services provided by clinicians who are not palliative care specialists-is an alternative approach that has not been rigorously evaluated., Methods: A cluster randomized, controlled trial of the CONNECT (Care management by Oncology Nurses to address supportive care needs) intervention, an oncology nurse-led care management approach to providing primary palliative care for patients with advanced cancer and their family caregivers, is currently underway at 16 oncology practices in Western Pennsylvania. Existing oncology nurses are trained to provide symptom management and emotional support, engage patients and families in advance care planning, and coordinate appropriate care using evidence-based care management strategies. The trial will assess the impact of CONNECT versus standard oncology care on patient quality of life (primary outcome), symptom burden, and mood; caregiver burden and mood; and healthcare resource use., Discussion: This trial addresses the need for more accessible models of palliative care by evaluating an intervention led by oncology nurses that can be widely disseminated in community oncology settings. The design confronts potential biases in palliative care research by randomizing at the practice level to avoid contamination, enrolling patients prior to informing them of group allocation, and conducting blinded outcome assessments. By collecting patient, caregiver, and healthcare utilization outcomes, the trial will enable understanding of the full range of a primary palliative care intervention's impact., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Amyloid-associated cystic lung disease is rare. It can be associated with collagen vascular disease (CVD). We aimed to describe the clinical, radiology, and pathology findings of this entity., Methods: We reviewed the records of subjects having biopsy-proven pulmonary amyloidosis with cystic lung disease demonstrated at high-resolution computed tomography (HRCT). Demographic characteristics, association with CVD and lymphoproliferative disorders, pulmonary function, and pathology results were reviewed. HRCT appearance was analyzed for number, size, distribution, and morphology of cysts and nodules., Results: Twenty-one subjects (13 female, eight male; median age, 61 years) with cystic pulmonary amyloidosis were identified. The most common pulmonary function patterns were normal (42%) and obstructive (32%). The most common associated CVD was Sjögren syndrome (10 of 12). Nine subjects had no CVD. Cysts tended to be multiple (≥ 10 in 14 of 21, 67%), round (21 of 21, 100%), or lobulated (20 of 21, 95%); thin-walled (< 2 mm in 17 of 21, 81%); and of small (< 1 cm in 21 of 21, 100%) to moderate (1-2 cm in 17 of 21, 81%) size. Peribronchovascular (19 of 21, 90%) and subpleural (19 of 21, 90%) cysts were typically present. Seventeen (81%) subjects had lung nodules, which tended to be numerous (≥ 10 in 10 of 17, 59%; 4-9 in six of 17, 35%). At least one calcified nodule was present in 14 of 17 subjects (82%). Pulmonary mucosa-associated lymphoid tissue lymphoma (MALToma) was diagnosed in seven subjects (33%)., Conclusions: Amyloid-associated cystic lung disease can occur with or without underlying CVD. Cystic lesions in the lung are commonly numerous, often are peribronchovascular or subpleural, and are frequently associated with nodular lesions that are often calcified. MALToma was a relatively frequent association., (Copyright © 2016 American College of Chest Physicians. Published by Elsevier Inc. All rights reserved.)

Efforts to answer the question of whether or when physicians may unilaterally refuse to provide treatments they deem medically futile, but that are nonetheless demanded by patients or their surrogates, have been characterized as intractable failures. We propose a new look at this old problem and suggest reframing the debate in terms of the implicit social contract, in healthy democracies, between the medical profession and the society it serves. This ever-evolving contract is predicated upon providing patients with beneficial and desired medical care within the constraints of scarce resources and the characteristics of our health-care system. The contract ranges over a continuum of decisions, from those that do not need an explicit negotiated agreement with the patient or surrogate, to those that do. Between these two poles lies a contentious gray area, where the rights and obligations of patients and physicians are being shaped continuously by the many forces that are at play in a democratic society, including professional guidelines, social advocacy, legislation, and litigation. We provide examples of how this gray area has been and is negotiated around rights to refuse and demand a variety of life-sustaining treatments, and anticipate conflicts likely to arise in the future. Reframing the futility debate in this way reveals that the issue is not a story of intractable failure, but rather, a successful narrative about how democracies balance the legitimate perspectives of patients and physicians against a backdrop of societal constraints and values.

Background: The burden of post-traumatic stress disorder (PTSD) symptoms may be associated with worse outcomes after transplantation. Little is known about the prevalence and correlates of PTSD symptoms in lung transplant recipients., Methods: We conducted a cross-sectional study of lung transplant recipients between April 2008 and February 2010 at a single center. The PTSD Checklist was used to determine the burden of PTSD symptomatology (total score) and percent of subjects with a provisional PTSD diagnosis (validated algorithms). We assessed the relationship between PTSD symptom burden and patient characteristics with multivariable logistic modeling., Results: We enrolled 210 subjects (response rate 91%). Most patients were female (50%), and Caucasian (89%). The median age was 59 (interquartile range [IQR] 48 to 63) years and the median time between transplant and follow-up was 2.4 (IQR 0.7 to 5.3) years. Clinically significant PTSD symptomatology was observed in 12.6% (8.4% to 17.9%) of subjects. Subjects were more likely to endorse symptoms of re-experiencing (29.5%) and arousal (33.8%) than avoidant symptoms (18.4%). Multivariable linear regression showed higher PTSD symptom scores among recipients who were: younger (p < 0.001); without private insurance (p = 0.001); exposed to trauma (p < 0.001); or diagnosed with bronchiolitis obliterans syndrome (p = 0.005)., Conclusions: Overall prevalence of PTSD (12.6%) in our study was two times higher than the general population. Patient characteristics found to be associated with an increased burden of PTSD symptoms may be useful to consider in future interventions designed to reduce this comorbidity., (Copyright © 2013 International Society for Heart and Lung Transplantation. Published by Elsevier Inc. All rights reserved.)

Rationing is the allocation of scarce resources, which in health care necessarily entails withholding potentially beneficial treatments from some individuals. Rationing is unavoidable because need is limitless and resources are not. How rationing occurs is important because it not only affects individual lives but also expresses society's most important values. This article discusses the following topics: (1) the inevitability of rationing of social goods, including medical care; (2) types of rationing; (3) ethical principles and procedures for fair allocation; and (4) whether rationing ICU care to those near the end of life would result in substantial cost savings.

Objective: To assess the feasibility of studying physician-patient communication in the acute care setting., Methods: We recruited hospitalist physicians and patients from two hospitals within a university system and audio-recorded their first encounter. Recruitment, data collection, and challenges encountered were tracked., Results: Thirty-two physicians consented (rate 91%). Between August 2008 and March 2009, 441 patients were referred, 210 (48%) were screened, and 119 (66% of 179 eligible) consented. We audio-recorded encounters of 80 patients with 27 physicians. Physicians' primary concern about participation was interference with their workflow. Addressing their concerns and building the protocol around their schedules facilitated participation. Challenges unique to the acute care setting were: (1) extremely limited time for patient identification, screening, and enrollment during which patients were ill and busy with clinical care activities and (2) little advance knowledge of when physician-patient encounters would occur. Employing a full-time study coordinator mitigated these challenges., Conclusion: Physician concerns for participating in communication studies are similar in ambulatory and acute care settings. The acute care setting presents novel challenges for patient recruitment and data collection., Practice Implications: These methods should be used to study provider-patient communication in acute care settings. Future work should test strategies to increase patient enrollment., (Copyright © 2010 Elsevier Ireland Ltd. All rights reserved.)

Purpose: To assess whether reactions to genetic explanations for disparities in lung cancer incidence among family members of African American patients with lung cancer are associated with willingness to participate in clinical genetics research., Methods: Data are reported for 67 self-identified African Americans aged 18 to 55 years who completed a telephone survey assessing reactions to explanations (i.e., genetics, toxin exposure, menthol cigarettes, and race-related stress) for lung cancer disparities. Majority were female (70%), current smokers (57%), and patients' biological relatives (70%)., Results: Family members rated the four explanations similarly, each as believable, fair, and not too worrisome. Participants also indicated a high level of willingness to participate in genetics research (M = 4.1 +/- 1.0; scale: 1-5). Endorsements of genetics explanations for disparities as believable and fair, and toxin exposure as believable were associated significantly with willingness to participate in genetics research., Conclusion: These results suggest that strategies to encourage African Americans' participation in genetics research would do well to inform potential participants of how their involvement might be used to better understand important environmental factors that affect health disparities.

Background: Although physicians sometimes use the futility rationale to limit the use of life-sustaining treatments, little is known about how surrogate decision makers view this rationale. We sought to determine the attitudes of surrogates of patients who are critically ill toward whether physicians can predict futility and whether these attitudes predict surrogates' willingness to discontinue life support when faced with predictions of futility., Methods: This multicenter, mixed qualitative and quantitative study took place at three hospitals in California from 2006 to 2007. We conducted semistructured interviews with surrogate decision makers for 50 patients who were critically ill and incapacitated that addressed their beliefs about medical futility and inductively developed an organizing framework to describe these beliefs. We used a hypothetical scenario with a modified time-trade-off design to examine the relationship between a patient's prognosis and a surrogate's willingness to withdraw life support. We used a mixed-effects regression model to examine the association between surrogates' attitudes about futility and their willingness to limit life support in the face of a very poor prognosis. Validation methods included the use and integration of multiple data sources, multidisciplinary analysis, and member checking., Results: Sixty-four percent of surrogates (n = 32; 95% confidence interval [CI], 49 to 77%) expressed doubt about the accuracy of physicians' futility predictions, 32% of surrogates (n = 16; 95% CI, 20 to 47%) elected to continue life support with a < 1% survival estimate, and 18% of surrogates (n = 9; 95% CI, 9 to 31%) elected to continue treatment when the physician believed that the patient had no chance of survival. Surrogates with religious objections to the futility rationale (n = 18) were more likely to request continued life support (odds ratio, 4; 95% CI, 1.2 to 14.0; p = 0.03) than those with secular or experiential objections (n = 15; odds ratio, 0.95; 95% CI, 0.3 to 3.4; p = 0.90)., Conclusions: Doubt about physicians' ability to predict medical futility is common among surrogate decision makers. The nature of the doubt may have implications for responding to conflicts about futility in clinical practice.

Because most critically ill patients lack decision-making capacity, physicians often ask family members to act as surrogates for the patient in discussions about the goals of care. Therefore, clinician-family communication is a central component of medical decision making in the ICU, and the quality of this communication has direct bearing on decisions made regarding care for critically ill patients. In addition, studies suggest that clinician-family communication can also have profound effects on the experiences and long-term mental health of family members. The purpose of this narrative review is to provide a context and rationale for improving the quality of communication with family members and to provide practical, evidence-based guidance on how to conduct this communication in the ICU setting. We emphasize the importance of discussing prognosis effectively, the key role of the integrated interdisciplinary team in this communication, and the importance of assessing spiritual needs and addressing barriers that can be raised by cross-cultural communication. We also discuss the potential value of protocols to encourage communication and the potential role of quality improvement for enhancing communication with family members. Last, we review issues regarding physician reimbursement for communication with family members within the context of the US health-care system. Communication with family members in the ICU setting is complex, and high-quality communication requires training and collaboration of a well-functioning interdisciplinary team. This communication also requires a balance between adhering to processes of care that are associated with improved outcomes and individualizing communication to the unique needs of the family.

Purpose: To examine the feasibility of offering genetic susceptibility testing for lung cancer (GSTM1) via the Internet to smokers who were blood relatives of patients with lung cancer. Outcomes include proportion who logged on to the study website to consider testing, made informed decisions to log on and to be tested., Methods: Baseline measures were assessed via telephone survey. Participants could choose to log on to the study website; those who did were offered testing. Informed decisions to log on and to be tested were indicated by concordance between the decision outcome and test-related attitudes and knowledge., Results: Three hundred four relatives completed baseline interviews. One hundred sixteen eligible relatives expressed further interest in receiving information via the web. Fifty-eight logged on and 44 tested. Those logging on expressed greater quit motivation, awareness of cancer genetic testing, and were more likely to be daily Internet users than those who did not log on. Approximately half of the sample made informed decisions to log on and to be tested., Conclusion: Interest in a web-based protocol for genetic susceptibility testing was high. Internet-delivered decision support was as likely as other modalities to yield informed decisions. Some subgroups may need additional support to improve their decision outcomes.

A method of sample size determination for estimation of probabilities based on a test variable is presented. Applications to estimation of sensitivity and specificity of medical tests are the focus of this research, although the methods can be applied to other areas of study such as engineering reliability. Examples are given for determining sample sizes required for the classification of patients with cutaneous lupus erythematosus based on the incidence of several markers. In this example, the test variable is the number of markers present. The methodology employs a weighted average of model-based and non-model-based estimates of the probability with the weights determined by the closeness to or the confidence in the given model. Formulas and charts required for determining sample size are provided for test variables that can be modeled by the binomial, Poisson, or normal distributions, i.e., for the most commonly encountered distributions for counting events (binomial and Poisson) and for measurements (normal). However, the methods given can be applied to any distribution, including multivariate. Especially when relatively small probabilities (the rare events) are being estimated, the techniques provided assistance in safeguarding against undersampling brought on by unwarranted confidence in a test variable distribution and against oversampling required for high accuracy in non-model-based probability estimators.