A Randomized Trial of a Family-Support Intervention in Intensive Care Units.

BACKGROUND: Surrogate decision makers for incapacitated, critically ill patients often struggle with decisions related to goals of care. Such decisions cause psychological distress in surrogates and may lead to treatment that does not align with patients' preferences. METHODS: We conducted a stepped-wedge, cluster-randomized trial involving patients with a high risk of death and their surrogates in five intensive care units (ICUs) to compare a multicomponent family-support intervention delivered by the interprofessional ICU team with usual care. The primary outcome was the surrogates' mean score on the Hospital Anxiety and Depression Scale (HADS) at 6 months (scores range from 0 to 42, with higher scores indicating worse symptoms). Prespecified secondary outcomes were the surrogates' mean scores on the Impact of Event Scale (IES; scores range from 0 to 88, with higher scores indicating worse symptoms), the Quality of Communication (QOC) scale (scores range from 0 to 100, with higher scores indicating better clinician-family communication), and a modified Patient Perception of Patient Centeredness (PPPC) scale (scores range from 1 to 4, with lower scores indicating more patient- and family-centered care), as well as the mean length of ICU stay. RESULTS: A total of 1420 patients were enrolled in the trial. There was no significant difference between the intervention group and the control group in the surrogates' mean HADS score at 6 months (11.7 and 12.0, respectively; beta coefficient, -0.34; 95% confidence interval [CI], -1.67 to 0.99; P=0.61) or mean IES score (21.2 and 20.3; beta coefficient, 0.90; 95% CI, -1.66 to 3.47; P=0.49). The surrogates' mean QOC score was better in the intervention group than in the control group (69.1 vs. 62.7; beta coefficient, 6.39; 95% CI, 2.57 to 10.20; P=0.001), as was the mean modified PPPC score (1.7 vs. 1.8; beta coefficient, -0.15; 95% CI, -0.26 to -0.04; P=0.006). The mean length of stay in the ICU was shorter in the intervention group than in the control group (6.7 days vs. 7.4 days; incidence rate ratio, 0.90; 95% CI, 0.81 to 1.00; P=0.045), a finding mediated by the shortened mean length of stay in the ICU among patients who died (4.4 days vs. 6.8 days; incidence rate ratio, 0.64; 95% CI, 0.52 to 0.78; P<0.001). CONCLUSIONS: Among critically ill patients and their surrogates, a family-support intervention delivered by the interprofessional ICU team did not significantly affect the surrogates' burden of psychological symptoms, but the surrogates' ratings of the quality of communication and the patient- and family-centeredness of care were better and the length of stay in the ICU was shorter with the intervention than with usual care. (Funded by the UPMC Health System and the Greenwall Foundation; PARTNER ClinicalTrials.gov number, NCT01844492 .).

A Multicenter Study of the Causes and Consequences of Optimistic Expectations About Prognosis by Surrogate Decision-Makers in ICUs.

OBJECTIVES: Optimistic expectations about prognosis by surrogate decision-makers in ICUs are common, but there are few data about the causes and clinical consequences. Our objective was to determine the causes of optimistic expectations about prognosis among surrogates and whether it is associated with more use of life support at the end of life. DESIGN: Prospective, multicenter cohort study from 2009 to 2012. SETTING: Twelve ICUs from multiple regions of the United States. SUBJECTS: The surrogates and physicians of 275 incapacitated ICU patients at high risk of death. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Surrogates and physicians completed a validated instrument assessing their prognostic expectations for hospital survival. We determined the proportion of surrogates with optimistic expectations, defined as a prognostic estimate that was at least 20% more optimistic than the physician's, then determined how frequently this arose from surrogates miscomprehending the physicians' prognosis versus holding more hopeful beliefs compared with the physician. We used multivariable regression to examine whether optimistic expectations were associated with length of stay, stratified by survival status, and time to withdrawal of life support among nonsurvivors. Overall, 45% of surrogates (95% CI, 38-51%) held optimistic expectations about prognosis, which arose from a combination of misunderstanding the physician's prognostic expectations and from holding more hopeful beliefs compared with the physician. Optimistic expectations by surrogates were associated with significantly longer duration of ICU treatment among nonsurvivors before death (ß coefficient = 0.44; 95% CI, 0.05-0.83; p = 0.027), corresponding to a 56% longer ICU stay. This difference was associated with a significantly longer time to withdrawal of life support among dying patients whose surrogates had optimistic prognostic expectations compared with those who did not (ß coefficient = 0.61; 95% CI, 0.16-1.07; p = 0.009). CONCLUSIONS: The prevalent optimism about prognosis among surrogates in ICUs arises both from surrogates' miscomprehension of physicians' prognostications and from surrogates holding more hopeful beliefs. This optimism is associated with longer duration of life support at the end of life.

Conflict Management Strategies in the ICU Differ Between Palliative Care Specialists and Intensivists.

OBJECTIVES: Conflict is common between physicians and surrogate decision makers around end-of-life care in ICU. Involving experts in conflict management improve outcomes, but little is known about what differences in conflict management styles may explain the benefit. We used simulation to examine potential differences in how palliative care specialists manage conflict with surrogates about end-of-life treatment decisions in ICUs compared with intensivists. DESIGN: Subjects participated in a high-fidelity simulation of conflict with a surrogate in an ICU. In this simulation, a medical actor portrayed a surrogate decision maker during an ICU family meeting who refuses to follow an advance directive that clearly declines advanced life-sustaining therapies. We audiorecorded the simulation encounters and applied a coding framework to quantify conflict management behaviors, which was organized into two categories: task-focused communication and relationship building. We used negative binomial modeling to determine whether there were differences between palliative care specialists' and intensivists' use of task-focused communication and relationship building. SETTING: Single academic medical center ICU. SUBJECTS: Palliative care specialists and intensivists. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We enrolled 11 palliative care specialists and 25 intensivists. The palliative care specialists were all attending physicians. The intensivist group consisted of 11 attending physicians, 9 pulmonary and critical care fellows, and 5 internal medicine residents rotating in the ICU. We excluded five residents from the primary analysis in order to reduce confounding due to training level. Physicians' mean age was 37 years with a mean of 8 years in practice. Palliative care specialists used 55% fewer task-focused communication statements (incidence rate ratio, 0.55; 95% CI, 0.36-0.83; p = 0.005) and 48% more relationship-building statements (incidence rate ratio, 1.48; 95% CI, 0.89-2.46; p = 0.13) compared with intensivists. CONCLUSIONS: We found that palliative care specialists engage in less task-focused communication when managing conflict with surrogates compared with intensivists. These differences may help explain the benefit of palliative care involvement in conflict and could be the focus of interventions to improve clinicians' conflict resolution skills.

Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Makers of Critically Ill Patients.

IMPORTANCE: Misperceptions about prognosis by individuals making decisions for incapacitated critically ill patients (surrogates) are common and often attributed to poor comprehension of medical information. OBJECTIVE: To determine the prevalence of and factors related to physician-surrogate discordance about prognosis in intensive care units (ICUs). DESIGN, SETTING, AND PARTICIPANTS: Mixed-methods study comprising quantitative surveys and qualitative interviews conducted in 4 ICUs at a major US medical center involving surrogate decision makers and physicians caring for patients at high risk of death from January 4, 2005, to July 10, 2009. MAIN OUTCOMES AND MEASURES: Discordance about prognosis, defined as a difference between a physician's and a surrogate's prognostic estimates of at least 20%; misunderstandings by surrogates (defined as any difference between a physician's prognostic estimate and a surrogate's best guess of that estimate); differences in belief (any difference between a surrogate's actual estimate and their best guess of the physician's estimate). RESULTS: Two hundred twenty-nine surrogate decision makers (median age, 47 [interquartile range {IQR}, 35-56] years; 68% women) and 99 physicians were involved in the care of 174 critically ill patients (median age, 60 [IQR, 47-74] years; 44% women). Physician-surrogate discordance about prognosis occurred in 122 of 229 instances (53%; 95% CI, 46.8%-59.7%). In 65 instances (28%), discordance was related to both misunderstandings by surrogates and differences in belief about the patient's prognosis; 38 (17%) were related to misunderstandings by surrogates only; 7 (3%) were related to differences in belief only; and data were missing for 12. Seventy-five patients (43%) died. Surrogates' prognostic estimates were much more accurate than chance alone, but physicians' prognostic estimates were statistically significantly more accurate than surrogates' (C statistic, 0.83 vs 0.74; absolute difference, 0.094; 95% CI, 0.024-0.163; P = .008). Among 71 surrogates interviewed who had beliefs about the prognosis that were more optimistic than that of the physician, the most common reasons for optimism were a need to maintain hope to benefit the patient (n = 34), a belief that the patient had unique strengths unknown to the physician (n = 24), and religious belief (n = 19). CONCLUSIONS AND RELEVANCE: Among critically ill patients, discordant expectations about prognosis were common between patients' physicians and surrogate decision makers and were related to misunderstandings by surrogates about physicians' assessments of patients' prognoses and differences in beliefs about patients' prognoses.

Prevalence of Advance Directives Among Older Adults Admitted to Intensive Care Units and Requiring Mechanical Ventilation.

Because older adults are at high risk for hospitalization and potential decisional incapacity, advance directives are important components of pre-hospital advanced care planning, as they document individual preferences for future medical care. The prevalence of pre-hospital advance directive completion in 450 critically ill older adults requiring mechanical ventilation from two Mid-Atlantic hospitals is described, and demographic and clinical predictors of pre-hospital advance directive completion are explored. The overall advance directive completion rate was 42.4%, with those in older age groups (75 to 84 years and 85 and older) having approximately two times the odds of completion. No significant differences in the likelihood of advance directive completion were noted by sex, race, or admitting diagnosis. The relatively low prevalence of advance directive completion among older adults with critical illness and high mortality rate (24%) suggest a need for greater awareness and education.

Quality of communication in the ICU and surrogate's understanding of prognosis.

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 predict 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 greater than or equal to ±20%. We used multilevel logistic regression modeling to account for clustering under physicians and patients and adjust for confounders. SETTING: Medical-surgical, trauma, cardiac, and neurologic ICUs of five U.S. academic medical centers located in California, Pennsylvania, Washington, North Carolina, and Massachusetts. PATIENTS: Two hundred seventy-five patients with acute respiratory distress syndrome at high risk of death or severe functional impairment, their 546 surrogate decision makers, and their 150 physicians. INTERVENTIONS: None. 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 (odds ratio, 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 high, 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.

How clinicians discuss critically ill patients' preferences and values with surrogates: an empirical analysis.

OBJECTIVES: Although shared decision making requires clinicians to discuss the patient's values and preferences, little is known about the extent to which this occurs with surrogates in ICUs. We sought to assess whether and how clinicians talk with surrogates about incapacitated patients' preferences and values. DESIGN: Prospective, cross-sectional study. SETTING: Five ICUs of two hospitals. SUBJECTS: Fifty-four physicians and 159 surrogates for 71 patients. INTERVENTIONS: We audio-recorded 71 conferences in which clinicians and surrogates discussed life-sustaining treatment decisions for an incapacitated patient near the end of life. Two coders independently coded each instance in which clinicians or surrogates discussed the patient's previously expressed treatment preferences or values. They subcoded for values that are commonly important to patients near the end of life. They also coded treatment recommendations by clinicians that incorporated the patient's preferences or values. MEASUREMENTS AND MAIN RESULTS: In 30% of conferences, there was no discussion about the patient's previously expressed preferences or values. In 37%, clinicians and surrogates discussed both the patient's treatment preferences and values. In the remaining 33%, clinicians and surrogates discussed either the patient's treatment preferences or values, but not both. In more than 88% of conferences, there was no conversation about the patient's values regarding autonomy and independence, emotional well-being and relationships, physical function, cognitive function, or spirituality. On average, 3.8% (SD, 4.3; range, 0-16%) of words spoken pertained to patient preferences or values. CONCLUSIONS: In roughly a third of ICU family conferences for patients at high risk of death, neither clinicians nor surrogates discussed patients' preferences or values about end-of-life decision making. In less than 12% of conferences did participants address values of high importance to most patients, such as cognitive and physical function. Interventions are needed to ensure patients' values and preferences are elicited and integrated into end-of-life decisions in ICUs.

Association Between Shared Decision-Making During Family Meetings and Surrogates' Trust in Their ICU Physician.

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.

Variability of Prognostic Communication in Critically Ill Neurologic Patients: A Pilot Multicenter Mixed-Methods Study.

IMPORTANCE: Withdrawal-of-life-sustaining treatments (WOLST) rates vary widely among critically ill neurologic patients (CINPs) and cannot be solely attributed to patient and family characteristics. Research in general critical care has shown that clinicians prognosticate to families with high variability. Little is known about how clinicians disclose prognosis to families of CINPs, and whether any associations exist with WOLST. OBJECTIVES: Primary: to demonstrate feasibility of audio-recording clinician-family meetings for CINPs at multiple centers and characterize how clinicians communicate prognosis during these meetings. Secondary: to explore associations of 1) clinician, family, or patient characteristics with clinicians' prognostication approaches and 2) prognostication approach and WOLST. DESIGN SETTING AND PARTICIPANTS: Forty-three audio-recorded clinician-family meetings during which prognosis was discussed from seven U.S. centers for 39 CINPs with 88 family members and 27 clinicians. MAIN OUTCOMES AND MEASURES: Two investigators qualitatively coded transcripts using inductive methods (inter-rater reliability > 80%) to characterize how clinicians prognosticate. We then applied univariate and multivariable multinomial and binomial logistic regression. RESULTS: Clinicians used four distinct prognostication approaches: Authoritative (21%; recommending treatments without discussing values and preferences); Informational (23%; disclosing just the prognosis without further discussions); advisory (42%; disclosing prognosis followed by discussion of values and preferences); and responsive (14%; eliciting values and preferences, then disclosing prognosis). Before adjustment, prognostication approach was associated with center (p < 0.001), clinician specialty (neurointensivists vs non-neurointensivists; p = 0.001), patient age (p = 0.08), diagnosis (p = 0.059), and meeting length (p = 0.03). After adjustment, only clinician specialty independently predicted prognostication approach (p = 0.027). WOLST decisions occurred in 41% of patients and were most common under the advisory approach (56%). WOLST was more likely in older patients (p = 0.059) and with more experienced clinicians (p = 0.07). Prognostication approach was not independently associated with WOLST (p = 0.198). CONCLUSIONS AND RELEVANCE: It is feasible to audio-record sensitive clinician-family meetings about CINPs in multiple ICUs. We found that clinicians prognosticate with high variability. Our data suggest that larger studies are warranted in CINPs to examine the role of clinicians' variable prognostication in WOLST decisions.

Protocol for a randomised trial of an interprofessional team-delivered intervention to support surrogate decision-makers in ICUs.

INTRODUCTION: Although shortcomings in clinician-family communication and decision making for incapacitated, critically ill patients are common, there are few rigorously tested interventions to improve outcomes. In this manuscript, we present our methodology for the Pairing Re-engineered Intensive Care Unit Teams with Nurse-Driven Emotional support and Relationship Building (PARTNER 2) trial, and discuss design challenges and their resolution. METHODS AND ANALYSIS: This is a pragmatic, stepped-wedge, cluster randomised controlled trial comparing the PARTNER 2 intervention to usual care among 690 incapacitated, critically ill patients and their surrogates in five ICUs in Pennsylvania. Eligible subjects will include critically ill patients at high risk of death and/or severe long-term functional impairment, their main surrogate decision-maker and their clinicians. The PARTNER intervention is delivered by the interprofessional ICU team and overseen by 4-6 nurses from each ICU. It involves: (1) advanced communication skills training for nurses to deliver support to surrogates throughout the ICU stay; (2) deploying a structured family support pathway; (3) enacting strategies to foster collaboration between ICU and palliative care services and (4) providing intensive implementation support to each ICU to incorporate the family support pathway into clinicians' workflow. The primary outcome is surrogates' ratings of the quality of communication during the ICU stay as assessed by telephone at 6-month follow-up. Prespecified secondary outcomes include surrogates' scores on the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the modified Patient Perception of Patient Centredness scale, the Decision Regret Scale, nurses' scores on the Maslach Burnout Inventory, and length of stay during and costs of the index hospitalisation.We also discuss key methodological challenges, including determining the optimal level of randomisation, using existing staff to deploy the intervention and maximising long-term follow-up of participants. ETHICS AND DISSEMINATION: We obtained ethics approval through the University of Pittsburgh, Human Research Protection Office. The findings will be published in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT02445937.

Clinician-Family Communication About Patients' Values and Preferences in Intensive Care Units.

Importance: Little is known about whether clinicians and surrogate decision makers follow recommended strategies for shared decision making by incorporating intensive care unit (ICU) patients' values and preferences into treatment decisions. Objectives: To determine how often clinicians and surrogates exchange information about patients' previously expressed values and preferences and deliberate and plan treatment based on these factors during conferences about prognosis and goals of care for incapacitated ICU patients. Design, Setting, and Participants: A secondary analysis of a prospective, multicenter cohort study of audiorecorded clinician-family conferences between surrogates and clinicians of 249 incapacitated, critically ill adults was conducted. The study was performed between October 8, 2009, and October 23, 2012. Data analysis was performed between July 2, 2014, and April 20, 2015. Patient eligibility criteria included lack of decision-making capacity, a diagnosis of acute respiratory distress syndrome, and predicted in-hospital mortality of 50% or more. In addition to the patients, 451 surrogates and 144 clinicians at 13 ICUs at 6 US academic and community medical centers were included. Main Outcomes and Measures: Two coders analyzed transcripts of audiorecorded conversations for statements in which clinicians and surrogates exchanged information about patients' treatment preferences and health-related values and applied them in deliberation and treatment planning. Results: Of the 249 patients, 134 (54.9%) were men; mean (SD) age was 58.2 (16.5) years. Among the 244 conferences that addressed a decision about goals of care, 63 (25.8%; 95% CI, 20.3%-31.3%) contained no information exchange or deliberation about patients' values and preferences. Clinicians and surrogates exchanged information about patients' values and preferences in 167 (68.4%) (95% CI, 62.6%-74.3%) of the conferences and specifically deliberated about how the patients' values applied to the decision in 108 (44.3%; 95% CI, 38.0%-50.5%). Important end-of-life considerations, such as physical, cognitive, and social functioning or spirituality were each discussed in 87 (35.7%) or less of the conferences; surrogates provided a substituted judgment in 33 (13.5%); and clinicians made treatment recommendations based on patients' values and preferences in 20 conferences (8.2%). Conclusions and Relevance: Most clinician-family conferences about prognosis and goals of care for critically ill patients appear to lack important elements of communication about values and preferences, with robust deliberation being particularly deficient. Interventions may be needed to better prepare surrogates for these conversations and improve clinicians' communication skills for eliciting and incorporating patients' values and preferences into treatment decisions.

Protocol and Fidelity Monitoring Plan for Four Supports. A Multicenter Trial of an Intervention to Support Surrogate Decision Makers in Intensive Care Units.

Individuals acting as surrogate decision makers for critically ill patients frequently struggle in this role and experience high levels of long-term psychological distress. Prior interventions designed to improve the sharing of information by the clinical team with surrogate decision makers have demonstrated little effect on surrogates' outcomes or clinical decisions. In this report, we describe the study protocol and corresponding intervention fidelity monitoring plan for a multicenter randomized clinical trial testing the impact of a multifaceted surrogate support intervention (Four Supports) on surrogates' psychological distress, the quality of decisions about goals of care, and healthcare use. We will randomize the surrogates of 300 incapacitated critically ill patients at high risk of death and/or severe long-term functional impairment to receive the Four Supports intervention or an education control. The Four Supports intervention adds to the intensive care unit (ICU) team a trained interventionist (family support specialist) who delivers four types of protocolized support-emotional support; communication support; decisional support; and, if indicated, anticipatory grief support-to surrogates through daily interactions during the ICU stay. The primary outcome is surrogates' symptoms of anxiety and depression at 6-month follow-up, measured with the Hospital Anxiety and Depression Scale. Prespecified secondary outcome measures are the Patient Perception of Patient Centeredness Scale (modified for use with surrogates) and Impact of Event Scale scores at 3- and 6-month follow-up, respectively, together with ICU and hospital lengths of stay and total hospital cost among decedents. The fidelity monitoring plan entails establishing and measuring adherence to the intervention using multiple measurement methods, including daily checklists and coding of audiorecorded encounters. This approach to intervention fidelity may benefit others designing and testing behavioral interventions in the ICU setting. Clinical trial registered with www.clinicaltrials.gov (NCT01982877).

Key stakeholders' perceptions of the acceptability and usefulness of a tablet-based tool to improve communication and shared decision making in ICUs.

PURPOSE: Although barriers to shared decision making in intensive care units are well documented, there are currently no easily scaled interventions to overcome these problems. We sought to assess stakeholders' perceptions of the acceptability, usefulness, and design suggestions for a tablet-based tool to support communication and shared decision making in ICUs. METHODS: We conducted in-depth semi-structured interviews with 58 key stakeholders (30 surrogates and 28 ICU care providers). Interviews explored stakeholders' perceptions about the acceptability of a tablet-based tool to support communication and shared decision making, including the usefulness of modules focused on orienting families to the ICU, educating them about the surrogate's role, completing a question prompt list, eliciting patient values, educating about treatment options, eliciting perceptions about prognosis, and providing psychosocial support resources. The interviewer also elicited stakeholders' design suggestions for such a tool. We used constant comparative methods to identify key themes that arose during the interviews. RESULTS: Overall, 95% (55/58) of participants perceived the proposed tool to be acceptable, with 98% (57/58) of interviewees finding six or more of the seven content domains acceptable. Stakeholders identified several potential benefits of the tool including that it would help families prepare for the surrogate role and for family meetings as well as give surrogates time and a framework to think about the patient's values and treatment options. Key design suggestions included: conceptualize the tool as a supplement to rather than a substitute for surrogate-clinician communication; make the tool flexible with respect to how, where, and when surrogates can access the tool; incorporate interactive exercises; use video and narration to minimize the cognitive load of the intervention; and build an extremely simple user interface to maximize usefulness for individuals with low computer literacy. CONCLUSION: There is broad support among stakeholders for the use of a tablet-based tool to improve communication and shared decision making in ICUs. Eliciting the perspectives of key stakeholders early in the design process yielded important insights to create a tool tailored to the needs of surrogates and care providers in ICUs.

Health Care Professionals' Responses to Religious or Spiritual Statements by Surrogate Decision Makers During Goals-of-Care Discussions.

IMPORTANCE: Although many patients and their families view religion or spirituality as an important consideration near the end of life, little is known about the extent to which religious or spiritual considerations arise during goals-of-care conversations in the intensive care unit. OBJECTIVES: To determine how frequently surrogate decision makers and health care professionals discuss religious or spiritual considerations during family meetings in the intensive care unit and to characterize how health care professionals respond to such statements by surrogates. DESIGN, SETTING, AND PARTICIPANTS: A multicenter prospective cohort study was conducted between October 8, 2009, and October 24, 2012, regarding 249 goals-of-care conversations between 651 surrogate decision makers and 441 health care professionals in 13 intensive care units across the United States. Audio-recorded conversations between surrogate decision makers and health care professionals were analyzed, transcribed, and qualitatively coded. Data analysis took place from March 10, 2012, through May 24, 2014. EXPOSURES: Goals-of-care conferences. MAIN OUTCOMES AND MEASURES: Constant comparative methods to develop a framework for coding religious and spiritual statements were applied to the transcripts. Participants completed demographic questionnaires that included religious affiliation and religiosity. RESULTS: Of 457 surrogate decision makers, 355 (77.6%) endorsed religion or spirituality as fairly or very important in their life. Discussion of religious or spiritual considerations occurred in 40 of 249 conferences (16.1%). Surrogates were the first to raise religious or spiritual considerations in most cases (26 of 40). Surrogates' statements (n=59) fell into the following 5 main categories: references to their religious or spiritual beliefs, including miracles (n=34); religious practices (n=19); religious community (n=8); the notion that the physician is God's instrument to promote healing (n=4); and the interpretation that the end of life is a new beginning for their loved one (n=4). Some statements fell into more than 1 category. In response to surrogates' religious or spiritual statements, health care professionals redirected the conversation to medical considerations (n=15), offered to involve hospital spiritual care providers or the patient's own religious or spiritual community (n=14), expressed empathy (n=13), acknowledged surrogates' statements (n=11), or explained their own religious or spiritual beliefs (n=3). In only 8 conferences did health care professionals attempt to further understand surrogates' beliefs, for example, by asking questions about the patient's religion. CONCLUSIONS AND RELEVANCE: Among a cohort of surrogate decision makers with a relatively high degree of religiosity, discussion of religious or spiritual considerations occurred in fewer than 20% of goals-of-care conferences in intensive care units, and health care professionals rarely explored the patient's or family's religious or spiritual ideas.

Prior Advance Care Planning Is Associated with Less Decisional Conflict among Surrogates for Critically Ill Patients.

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, -6.4 to -0.2; 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.

Key stakeholders' perspectives on a Web-based advance care planning tool for advanced lung disease.

PURPOSE: There is a paucity of scalable advance care planning strategies that achieve the diverse goals of patients, families, and clinicians. We convened key stakeholders to gain their perspectives on developing a Web-based advance care planning tool for lung disease. MATERIALS AND METHODS: We conducted semistructured interviews with 50 stakeholders: 21 patients with lung disease, 18 surrogates, and 11 clinicians. Interviews explored stakeholders' desired content and design features of a Web-based advance care planning tool. Participants also rated the tool's acceptability and potential usefulness. We analyzed the interviews with modified grounded theory and validated themes through member checking. RESULTS: Stakeholders highly rated the acceptability (median, 5; interquartile range, 5-5) and potential usefulness (median, 5; interquartile range, 4-5) of a Web-based tool. Interviewees offered several suggestions: (1) use videos of medical scenarios and patient narratives rather than text, (2) include interactive content, and (3) allow the user control over how much they complete in 1 sitting. Participants identified challenges and potential solutions, such as how to manage the emotional difficulty of thinking about death and accommodate low computer literacy users. CONCLUSIONS: There is strong stakeholder support for the development of a Web-based advance care planning tool for lung disease.

Developing a Community-Based Tailored Exercise Program for People With Severe and Persistent Mental Illness.

BACKGROUND: People with severe and persistent mental illness (SPMI) are at a greater risk of medical issues compared with the general population. Exercise has a positive effect on physical and mental health outcomes among this population in community settings. OBJECTIVES: To describe community-based participatory research (CBPR) methods used to tailor an exercise program among people with SPMI, demonstrate its impact, and present lessons learned for future research. METHODS: The partnership developed a project to explore the feasibility of implementing a physical activity program at a community agency among clients with SPMI. LESSONS LEARNED: Data showed improved trends in mood, social support, and physical and mental health outcomes. Facilitators and barriers must be carefully considered for recruitment and retention. CONCLUSIONS: A gender-specific, group-based, tailored exercise intervention developed through collaboration with a community agency serving people with SPMI using CBPR methods is feasible.

A multicenter study of key stakeholders' perspectives on communicating with surrogates about prognosis in intensive care units.

RATIONALE: Surrogates of critically ill patients often have inaccurate expectations about prognosis. Yet there is little research on how intensive care unit (ICU) clinicians should discuss prognosis, and existing expert opinion-based recommendations give only general guidance that has not been validated with surrogate decision makers. OBJECTIVE: To determine the perspectives of key stakeholders regarding how prognostic information should be conveyed in critical illness. METHODS: This was a multicenter study at three academic medical centers in California, Pennsylvania, and Washington. One hundred eighteen key stakeholders completed in-depth semistructured interviews. Participants included 47 surrogates of adult patients with acute respiratory distress syndrome; 45 clinicians working in study ICUs, including physicians, nurses, social workers, and spiritual care providers; and 26 experts in health communication, decision science, ethics, family-centered care, geriatrics, healthcare disparities, palliative care, psychology, psychiatry, and critical care. MEASUREMENTS AND MAIN RESULTS: There was broad support among surrogates for existing expert recommendations, including truthful prognostic disclosure, emotional support, tailoring the disclosure strategy to each family's needs, and checking for understanding. In addition, stakeholders offered suggestions that add specificity to existing recommendations, including: (1) In addition to conveying prognostic estimates, clinicians should help families "see the prognosis for themselves" by showing families radiographic images and explaining the clinical significance of physical manifestations of severe disease at the bedside. (2) Many physicians did not support using numeric estimates to convey prognosis to families, whereas many surrogates, clinicians from other disciplines, and experts believed numbers could be helpful. (3) Clinicians should conceptualize prognostic communication as an iterative process that begins with a preliminary mention of the possibility of death early in the ICU stay and becomes more detailed as the clinical situation develops. (4) Although prognostic information should be initially disclosed by physicians, other members of the multidisciplinary team-nurses, social workers, and spiritual care providers-should be given explicit role responsibilities to reinforce physicians' prognostications and help families process a poor prognosis emotionally. CONCLUSIONS: Family members, clinicians, and experts identified specific communication behaviors that clinicians should use to discuss prognosis in the critical care setting. These findings extend existing opinion-based recommendations and should guide interventions to improve communication about prognosis in ICUs.