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Background and Rationale: ICU clinicians regularly care for patients who lack capacity, an applicable advance directive, and an available surrogate decision-maker. Although there is no consensus on terminology, we refer to these patients as "unrepresented." There is considerable controversy about how to make treatment decisions for these patients, and there is significant variability in both law and clinical practice.Purpose and Objectives: This multisociety statement provides clinicians and hospital administrators with recommendations for decision-making on behalf of unrepresented patients in the critical care setting.Methods: An interprofessional, multidisciplinary expert committee developed this policy statement by using an iterative consensus process with a diverse working group representing critical care medicine, palliative care, pediatric medicine, nursing, social work, gerontology, geriatrics, patient advocacy, bioethics, philosophy, elder law, and health law.Main Results: The committee designed its policy recommendations to promote five ethical goals: 1) to protect highly vulnerable patients, 2) to demonstrate respect for persons, 3) to provide appropriate medical care, 4) to safeguard against unacceptable discrimination, and 5) to avoid undue influence of competing obligations and conflicting interests. These recommendations also are intended to strike an appropriate balance between excessive and insufficient procedural safeguards. The committee makes the following recommendations: 1) institutions should offer advance care planning to prevent patients at high risk for becoming unrepresented from meeting this definition; 2) institutions should implement strategies to determine whether seemingly unrepresented patients are actually unrepresented, including careful capacity assessments and diligent searches for potential surrogates; 3) institutions should manage decision-making for unrepresented patients using input from a diverse interprofessional, multidisciplinary committee rather than ad hoc by treating clinicians; 4) institutions should use all available information on the patient's preferences and values to guide treatment decisions; 5) institutions should manage decision-making for unrepresented patients using a fair process that comports with procedural due process; 6) institutions should employ this fair process even when state law authorizes procedures with less oversight.Conclusions: This multisociety statement provides guidance for clinicians and hospital administrators on medical decision-making for unrepresented patients in the critical care setting.

Despite having a higher prevalence and severity of obstructive sleep apnea (OSA), African Americans have lower adherence to continuous positive airway pressure (CPAP) compared to other groups. Information regarding challenges faced by African Americans prescribed CPAP are lacking. To determine the barriers and facilitators to optimal management of OSA with CPAP among African Americans and to understand the role bed partners may play. We conducted semi-structured in-depth interviews via video conferencing with African American patients of an urban safety-net health care system with OSA prescribed CPAP and their bed partners. Recruitment continued until theoretical saturation was achieved. Verbatim transcripts were analyzed using the principles of thematic analysis. 15 patients (12 women) diagnosed with OSA and prescribed CPAP a mean 2.6 years prior along with 15 bed partners (3 women) were individually interviewed. Four themes emerged regarding impediments to CPAP use: 1) inadequate education and support, 2) CPAP maintenance and hygiene, 3) inconvenient design of CPAP interfaces, and 4) impediment to intimacy. Four themes emerged as facilitators to CPAP use: 1) provider and technical support, 2) properly fitted CPAP masks, 3) active support from partner and family, and 4) experiencing positive results from CPAP. African American patients with OSA and their bed partners identified several unique barriers and facilitators to CPAP use. Active involvement by bed partners was considered by both patients and partners as helpful in improving CPAP adherence. Interventions to improve OSA outcomes in this population should focus on patients and their bed partners. [ABSTRACT FROM AUTHOR]

Continuous positive airway pressure (CPAP) is the first-line treatment for obstructive sleep apnea (OSA). Although CPAP improves symptoms (e.g., daytime sleepiness), there is a lack of high-quality evidence that CPAP prevents many long-term outcomes, including cognitive impairment, myocardial infarction, and stroke. Observational studies suggest that patients with symptoms may be particularly likely to experience these preventive benefits with CPAP, but ethical and practical concerns limited the participation of such patients in prior long-term randomized trials. As a result, there is uncertainty about the full benefits of CPAP, and resolving this uncertainty is a key priority for the field. This workshop assembled clinicians, researchers, ethicists, and patients to identify strategies to understand the causal effects of CPAP on long-term clinically important outcomes among patients with symptomatic OSA. Quasi-experimental designs can provide valuable information and are less time and resource intensive than trials. Under specific conditions and assumptions, quasi-experimental studies may be able to provide causal estimates of CPAP's effectiveness from generalizable observational cohorts. However, randomized trials represent the most reliable approach to understanding the causal effects of CPAP among patients with symptoms. Randomized trials of CPAP can ethically include patients with symptomatic OSA, as long as there is outcome-specific equipoise, adequate informed consent, and a plan to maximize safety while minimizing harm (e.g., monitoring for pathologic sleepiness). Furthermore, multiple strategies exist to ensure the generalizability and practicality of future randomized trials of CPAP. These strategies include reducing the burden of trial procedures, improving patient-centeredness, and engaging historically excluded and underserved populations.

Purpose: Among the general population, discussing organ donation with a primary care provider may be associated with increased willingness to donate. However, the frequency with which primary care providers hold these discussions with their patients has not been reported., Setting: Cross-sectional mail and an Internet survey of validated questions regarding organ donation were done., Subjects: A national sample of 831 primary care physicians. black, and Hispanic physicians were oversampled., Results: Few physicians reported receiving formal training in donation (17%). Only 5% of physicians have donor cards available in their practice, and only 11% have donation information available in their practice. While 30% of physicians reported discussing end-of-life care with their patients, fewer than 4% reported discussing donation with their patients. However, only 36% felt that discussing donation was outside of their scope of practice. In a multivariate regression model, predictors of discussing donation with patients included having received formal education about organ donation (odds ratio [OR], 2.6; p < .05) and discussing end-of-life care with patients (OR, 12.8; p < .001)., Conclusions: Very few primary care physicians reported discussing organ donation with their patients despite the majority agreeing that it was within their scope of practice. Primary care physicians who had received education on the subject or who regularly discuss end-of-life care with their patients were more likely to discuss donation. Efforts to improve donation in the general population should include a focus on understanding and improving communication about organ donation between providers and their patients.

Objectives: Previous studies have demonstrated that informed healthcare providers could increase patient willingness to donate. We assessed medical students' knowledge and attitudes to determine their preparedness to encourage organ donation., Methods: 500 first- and second-year students attending one of three Ohio medical schools completed the 41-item questionnaire (93% cooperation rate). The questions evaluated students' donation knowledge, training, exposure and perceived barriers as well as their willingness to donate., Results: On univariate analysis, Asians (OR: 0.5, 95% CI: 0.2-0.9) and blacks (OR: 0.1, 95% CI: 0.1-0.2) were less willing than whites to donate. On multivariate analysis, race was no longer significantly associated with willingness to donate,Three factors were associated with a decreased donation willingness: wanting burial with organs intact (OR: 0.1, 95%CI: 0.1-0.2), having personal conflicts with donation (OR: 0.2, 95%Cl: 0.1-0.6), and concern that carrying a donor card will lead to insufficient medical care (OR: 0.2, 95% Cl: 0.1-0.4). Of note, knowledge was not associated with willingness to donate., Conclusion: In this medical student cohort, minorities were less willing to donate. Three factors were associated with a decreased willingness to donate regardless of student race. Addressing these barriers may increase student donation willingness, and physicians should encourage donation discussions with their patients.

Objectives: A useful framework for initiating organ donation discussions in the primary care setting may help increase willingness to donate and thereby increase the frequency of organ transplantation. Given the lower willingness to donate among African Americans and that a higher proportion of African Americans die while waiting for an organ transplant, this is an important group to consider in such an approach. We examined the association among completion of a living will and willingness to donate and the influence of race in this relationship., Methods: A nationwide telephone interview survey using random digit dialing of households in high- and low-density African-American census blocks., Results: One hundred-eighty-eight adults participated (41% cooperation rate). In a multivariate model, factors associated with willingness to donate included having signed a living will (OR=2.43, 95% CI=1.13-5.23), talking with a physician about organ donation (OR=3.04, 95% CI=1.07-8.67) and white race (OR=2.5, 95% CI=1.23-5)., Conclusion: The public is generally supportive of organ donation although African Americans remain less willing to donate after controlling for confounding variables. Physicians interested in increasing donation rates should consider incorporating organ donation into discussions of advance care planning and end-of-life care.