Rationale: Although numerous studies have documented that family members in intensive care units struggle with end-of-life decisions for incapacitated patients, there is little information about whether prior advance care planning lessens the burden of decision making.Objectives: We sought to measure decisional conflict in surrogates of critically ill patients and to examine whether prior advance care planning is associated with less decisional conflict. Methods:We performed a secondary data analysis of a multicenter, prospective cohort study done at five U.S. academic medical centers that included 471 surrogates of 257 patients with acute respiratory distress syndrome. The main outcome was surrogates' burden of decision making as measured using the Decisional Conflict Scale. Surrogates completed a questionnaire item addressing whether they had had any prior advance care planning conversations with their loved ones. We used multilevel linear regression modeling to measure the association between decisional conflict and advance care planning. Measurements and Main Results:Moderate or high levels of decisional conflict (Decisional Conflict Scale score >25) were present in 48% of surrogates. After adjusting for potential confounders, surrogates who had engaged in prior advance care planning conversations had significantly lower levels of decisional conflict than those who had not (mean score 3.3 points lower on the Decisional Conflict Scale; 95% confidence interval, 26.4 to 20.2; P = 0.03).Conclusions: Nearly half of surrogates for critically ill patients have moderate or high levels of decisional conflict. Prior advance care planning was associated with less decisional conflict. These results suggest that the scope of the benefit of advance care planning may extend beyond respecting patients' wishes to also ameliorating the burden on patients' loved ones who act as surrogates.

No abstract

Objective Although misperceptions about prognosis by surrogates in ICUs are common and influence treatment decisions, there is no validated, practical way to measure the effectiveness of prognostic communication. Surrogates' subjective ratings of quality of communication have been used in other domains as markers of effectiveness of communication. We sought to determine whether surrogates' subjective ratings of the quality of prognostic communication predicts accurate expectation about prognosis by surrogates. Design We performed a cross sectional cohort study. Surrogates rated the quality of prognostic communication by survey. Physicians and surrogates gave their percentage estimate of patient survival on ICU day 3 on a 0-100 probability scale. We defined discordance about prognosis as a difference in the physician's and surrogate's estimates of ≥ +/-20%. We used multi-level logistic regression modeling to account for clustering under physicians and patients and adjust for confounders. Patients 275 patients with acute respiratory distress syndrome at high risk of death or severe functional impairment, their 546 surrogate decision makers, and their 150 physicians. Measurements and Main Results There was no predictive utility of surrogates' ratings of the quality of communication about prognosis to identify inaccurate expectations about prognosis. (OR 1.04 +/- 0.07, p 0.54). Surrogates' subjective ratings of the quality of communication about prognosis were high, as assessed with a variety of questions. Discordant prognostic estimates were present in 63.5% (95% CI: 59.0%-67.9%) of physician-surrogate pairs. Conclusions Although most surrogates rate the quality of prognostic communication highly, inaccurate expectations about prognosis are common among surrogates. Surrogates' ratings of the quality of prognostic communication do not reliably predict an accurate expectation about prognosis.

BackgroundLung Cancer is occasionally observed in patients with Idiopathic Pulmonary Fibrosis (IPF). We sought to describe the epidemiologic and clinical characteristics of lung cancer for patients with IPF and other interstitial lung disease (ILD) using institutional and statewide data registries.MethodsWe conducted a retrospective analysis of IPF and non-IPF ILD patients from the ILD center registry, to compare with lung cancer registries at the University of Pittsburgh as well as with population data of lung cancer obtained from Pennsylvania Department of Health between 2000 and 2015.ResultsAmong 1108 IPF patients, 31 patients were identified with IPF and lung cancer. The age-adjusted standard incidence ratio of lung cancer was 3.34 (with IPF) and 2.3 (with non-IPF ILD) (between-group Hazard ratio = 1.4, p = 0.3). Lung cancer worsened the mortality of IPF (p <  0.001). Lung cancer with IPF had higher mortality compared to lung cancer in non-IPF ILD (Hazard ratio = 6.2, p = 0.001). Lung cancer among IPF was characterized by a predilection for lower lobes (63% vs. 26% in non-IPF lung cancer, p <  0.001) and by squamous cell histology (41% vs. 29%, p = 0.07). Increased incidence of lung cancer was observed among single lung transplant (SLT) recipients for IPF (13 out of 97, 13.4%), with increased mortality compared to SLT for IPF without lung cancer (p = 0.028) during observational period.ConclusionsLung cancer is approximately 3.34 times more frequently diagnosed in IPF patients compared to general population, and associated with worse prognosis compared with IPF without lung cancer, with squamous cell carcinoma and lower lobe predilection. The causality between non-smoking IPF patients and lung cancer is to be determined.Electronic supplementary materialThe online version of this article (10.1186/s12931-018-0899-4) contains supplementary material, which is available to authorized users.

No abstract