EMS Experience Caring and Communicating with Patients and Families with a Life-Limiting-Illness.

Introduction: The emergency medical services (EMS) system was designed to reduce death and disability and EMS training focuses on saving lives through resuscitation, aggressive treatment and transportation to the emergency department. EMS providers commonly care for patients who have life-limiting illnesses. The objective was to explore EMS provider challenges, self-perceived roles and training experiences caring for patients and families with life-limiting illness. Methods: Qualitative content analysis of semi-structured interviews with EMS providers (n = 15) in Alameda County, CA. Purposive sampling was used to ensure a variety of perspectives including provider age, years of EMS experience, emergency medical technicians and paramedics, fire-based versus private, transport versus non-transporting. Recorded and transcribed interviews were analyzed using a thematic approach. Results: In their work with patients with life-limiting illness, participating EMS providers were interviewed and reported challenges for which their formal training had not prepared them: responding to grief and emotion expressed by families during traumatic events or death notification, and performing in the moment decision-making to determine the course of action after acute, unexpected, and traumatic events. Many participants reported becoming comfortable with grief counseling and death notification after acquiring some clinical experience. In the moment decision-making was eased when patients and families had had advance care planning discussions, however many patients, especially those from vulnerable and underserved populations, lacked advance care planning. In the face of situations where the course of action was not immediately clear, EMS providers voiced two frames for their role in caring for patients with life-limiting illness: transportation only ("transport people") versus a more "holistic" view, where EMS providers provided counseling and information about available resources. Conclusions: EMS providers interface with patients who have life-limiting illness and their families in the setting of traumatic events where the course of action is often unclear. There is an opportunity to provide formal training to EMS providers around grief counseling as well as how they can assist patients and families in in the moment decision-making to support previously identified goals and align care with patient goals and preferences.

Availability of Palliative Care in Long-Term Acute Care Hospitals.

OBJECTIVE: To determine the availability of palliative care programs in long-term acute care hospitals (LTACHs) DESIGN: Cross-sectional analysis using the 2016 American Hospital Association (AHA) Annual Survey. SETTING AND PARTICIPANTS: LTACHs in the United States. METHOD: We used descriptive analyses to compare the prevalence of palliative care programs in LTACHs across the United States in 2016. For LTACHs without a program, we also examined palliative care physician capacity in regions where those LTACHs resided to evaluate if expertise existed in those regions. RESULTS: One-third (36.5%) of 405 LTACHs (50.6% response rate) self-reported having a palliative care program. Among LTACHs without palliative care, 42.4% were in regions with the highest palliative care physician capacity nationwide. CONCLUSIONS AND IMPLICATIONS: LTACHs care for patients with serious and prolonged illnesses, many of whom would benefit from palliative care. Despite this, our study finds that specialty palliative care is limited in LTACHs. The limited palliative care availability in LTACHs is mismatched with the needs of this seriously ill population. Greater focus on increasing palliative care in LTACHs is essential and may be feasible as 40% of LTACHs without a palliative care program were located in regions with the highest palliative care physician capacity.

Generalist Palliative Care in the California Safety Net: A Structured Assessment to Design Interventions for a Range of Care Settings.

BACKGROUND: To provide high quality care to all patients who have serious illness, health-care systems must develop effective generalist palliative care strategies. OBJECTIVE: To identify palliative care quality gaps within a range of settings in the California safety net and to develop theory-based interventions to address them. DESIGN: Structured assessment using the National Consensus Project for Quality Palliative Care Clinical Practice Guidelines and a Predisposing, Reinforcing, and Enabling Constructs in Educational/Environmental Diagnosis and Evaluation intervention planning model-based worksheet, which integrates behavior theories to identify factors that predispose, enable, and reinforce clinicians to perform recommended behaviors. SETTING AND PARTICIPANTS: Adviser pairs-one from palliative care and one from a partner service line-from 10 California public health-care systems conducted assessments at their sites. A steering committee provided educational webinars, best practices, and assessment tools. MEASUREMENTS: Adviser pairs interviewed at least 6 partner service line stakeholders to identify palliative care quality gaps, behaviors clinicians should perform to close gaps, and factors that predispose, enable, and reinforce those behaviors. RESULTS: Partner service lines were primary care (n = 4), surgery (n = 3), emergency department (n = 2), and radiation oncology (n = 1). Selected gaps were advance care planning and goals of care communication (n = 6), identifying patients with serious illness (n = 3), and pain management (n = 1). All sites designed multiple interventions to address gaps, based on factors that predispose, enable, and reinforce a target audience to perform a target behavior. Advisers reported that the program strengthened relationships between palliative care and the partner service line. CONCLUSION: This structured assessment helped busy clinicians develop theory-based generalist palliative care interventions.

TeamTalk: Interprofessional Team Development and Communication Skills Training.

Background: Communication training is a hallmark of palliative care education. The purpose of this article is to report on the development, exploratory outcomes, and lessons learned from a pilot project, "TeamTalk," which adapted VitalTalk methodology for interprofessional learners. Materials and Methods: TeamTalk included a series of interactive workshops led by an interprofessional faculty team at a health sciences university. Teaching methods were small group discussion, reflection, and high-fidelity simulated patient/family encounters, using a "Skills and Capacities" handout. The course was offered between January and May of 2015 and 2016 to medical fellows, advanced practice nursing students, and chaplain interns. Pre- and post-test design and qualitative data analysis were used to assess the learners' response to the TeamTalk curriculum. Validated instruments assessed attitudes toward interprofessional collaboration and self-confidence for interprofessional communication. Results: Sixty-one learners participated in TeamTalk over two academic years. Attitudes toward interprofessional collaboration improved from pre- to post-test (126.1 ± 6.9-130.0 ± 7.1; p < 0.01) with no difference among the professional groups. Self-confidence for interprofessional communication improved in "eliciting the contributions of colleagues, including those from other disciplines" (p < 0.001) for all learners during year two; chaplains improved in the greatest number of areas (15/19), followed by nurses (7/19) and physicians (4/19). Learners expressed appreciation for the opportunity to explore their professional roles together with other professions. Conclusion: Preliminary findings indicate that TeamTalk improved attitudes toward interprofessional collaboration and self-confidence for participating on an interprofessional team. The lessons derived from creating and implementing this course may be applicable to interprofessional education in serious illness management.

Patient and Family Advisory Councils for Research: Recruiting and Supporting Members From Diverse and Hard-to-Reach Communities.

OBJECTIVE: To describe strategies to recruit and support members from hard-to-reach groups on research-focused Patient and Family Advisory Councils (PFACs). BACKGROUND: Ensuring diverse representation of members of research PFACs is challenging, and few studies have given attention to addressing this problem. METHODS: A qualitative study was conducted using 8 focus groups and 19 interviews with 80 PFAC members and leaders, hospital leaders, and researchers. RESULTS: Recruitment recommendations were: 1) utilizing existing networks; 2) going out to the community; 3) accessing outpatient clinics; and 4) using social media. Strategies to support inclusion were: 1) culturally appropriate communication methods; 2) building a sense of community between PFAC members; 3) equalizing roles between community members/leaders; 4) having a diverse PFAC leadership team; and 5) setting transparent expectations for PFAC membership. CONCLUSION: Increasing the diversity of research PFACs is a priority, and it is important to determine how best to engage groups that have been traditionally underrepresented.

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.

Measuring patient respect in the intensive care unit: Validation of the ICU-RESPECT instrument.

PURPOSE: To validate a brief index of patient and family experiences of respect in the intensive care unit. MATERIAL AND METHODS: A survey including the 10-item ICU-RESPECT scale was administered to patients and family members in one ICU at a large west coast academic medical center. Confirmatory psychometric analyses were conducted. RESULTS: Based on 142 completed surveys, factor analysis confirmed a unidimensional scale with an alpha of 0.90, an Eigen value of 4.9, and factor loadings from 0.50 to 0.86. The mean total score was 7.59 (SD = 3.06) out of a maximum of 10. Among the 106 surveys that included demographics, overall scores did not differ by type of respondent (patient or family) or by gender. There were modest differences in overall scores by patient race. Two individual items differed by type of respondent. CONCLUSIONS: The ICU-RESPECT index demonstrates reliability and concurrent validity in a different ICU setting from the one where the index was developed. Future research should assess the scale's predictive validity, and factors associated with variation in scores. As hospitals address patient experience more broadly in response to national metrics, the index could identify particular behaviors or ICUs that would benefit from interventions to enhance respectful treatment.

Patient and Family Advisory Councils (PFACs): Identifying Challenges and Solutions to Support Engagement in Research.

OBJECTIVE: The aim was to describe barriers to patient and family advisory council (PFAC) member engagement in research and strategies to support engagement in this context. METHODS: We formed a study team comprising patient advisors, researchers, physicians, and nurses. We then undertook a qualitative study using focus groups and interviews. We invited PFAC members, PFAC leaders, hospital leaders, and researchers from nine academic medical centers that are part of a hospital medicine research network to participate. All participants were asked a standard set of questions exploring the study question. We used content analysis to analyze data. RESULTS: Eighty PFAC members and other stakeholders (45 patient/caregiver members of PFACs, 12 PFAC leaders, 12 hospital leaders, 11 researchers) participated in eight focus and 19 individual interviews. We identified ten barriers to PFAC member engagement in research. Codes were organized into three categories: (1) individual PFAC member reluctance; (2) lack of skills and training; and (3) problems connecting with the right person at the right time. We identified ten strategies to support engagement. These were organized into four categories: (1) creating an environment where the PFAC members are making a genuine and unique contribution; (2) building community between PFAC members and researchers; (3) best practice activities for researchers to facilitate engagement; and (4) tools and training. CONCLUSION: Barriers to engaging PFAC members in research include patients' negative perceptions of research and researchers' lack of training. Building community between PFAC members and researchers is a foundation for partnerships. There are shared training opportunities for PFAC members and researchers to build skills about research and research engagement.

Distress Due to Prognostic Uncertainty in Palliative Care: Frequency, Distribution, and Outcomes among Hospitalized Patients with Advanced Cancer.

BACKGROUND: Prognostic uncertainty is common in advanced cancer and frequently addressed during palliative care consultation, yet we know little about its impact on quality of life (QOL). OBJECTIVE: We describe the prevalence and distribution of distress due to prognostic uncertainty among hospitalized patients with advanced cancer before palliative care consultation. We evaluate the association between this type of distress and overall QOL before and after palliative care consultation. DESIGN: Observational cohort study. SETTING & PARTICIPANTS: Hospitalized patients with advanced cancer who receive a palliative care consultation at two geographically distant academic medical centers. MEASUREMENTS: At the time of enrollment, before palliative care consultation, we asked participants: "Over the past two days, how much have you been bothered by uncertainty about what to expect from the course of your illness?" (Not at all/Slightly/Moderately/Quite a Bit/Extremely). We defined responses of "Quite a bit" and "Extremely" to be indicative of substantial distress. RESULTS: Two hundred thirty-six participants completed the baseline assessment. Seventy-seven percent reported being at least moderately bothered by prognostic uncertainty and half reported substantial distress. Compared with others, those who were distressed by prognostic uncertainty (118/236) reported poorer overall QOL before palliative care consultation (mean QOL 3.8 out of 10 vs. 5.3 out of 10, p = < 0.001) and greater improvement in QOL following consultation (Adjusted difference in mean QOL change = 1.1; 95% confidence interval = 0.2, 2.0). CONCLUSIONS: Prognostic uncertainty is a prevalent source of distress among hospitalized patients with advanced cancer at the time of initial palliative care consultation. Distress from prognostic uncertainty is associated with lower levels of preconsultation QOL and with greater pre-post consultation improvement in the QOL.

Associations of Physician Empathy with Patient Anxiety and Ratings of Communication in Hospital Admission Encounters.

OBJECTIVE: To assess the association between the frequency of empathic physician responses with patient anxiety, ratings of communication, and encounter length during hospital admission encounters. DESIGN: Analysis of coded audio-recorded hospital admission encounters and pre- and postencounter patient survey data. SETTING: Two academic hospitals. PATIENTS: Seventy-six patients admitted by 27 attending hospitalist physicians. MEASUREMENTS: Recordings were transcribed and analyzed by trained coders, who counted the number of empathic, neutral, and nonempathic verbal responses by hospitalists to their patients' expressions of negative emotion. We developed multivariable linear regression models to test the association between the number of these responses and the change in patients' State Anxiety Scale (STAI-S) score pre- and postencounter and encounter length. We used Poisson regression models to examine the association between empathic response frequency and patient ratings of the encounter. RESULTS: Each additional empathic response from a physician was associated with a 1.65-point decline in the STAI-S anxiety scale (95% confidence interval [CI], 0.48-2.82). Frequency of empathic responses was associated with improved patient ratings for covering points of interest, feeling listened to and cared about, and trusting the doctor. The number of empathic responses was not associated with encounter length (percent change in encounter length per response 1%; 95% CI, -8%-10%). CONCLUSIONS: Responding empathically when patients express negative emotion was associated with less patient anxiety and higher ratings of communication but not longer encounter length.

Palliative Care Professional Development for Critical Care Nurses: A Multicenter Program.

BACKGROUND: Integrating palliative care into intensive care units (ICUs) requires involvement of bedside nurses, who report inadequate education in palliative care. OBJECTIVE: To implement and evaluate a palliative care professional development program for ICU bedside nurses. METHODS: From May 2013 to January 2015, palliative care advanced practice nurses and nurse educators in 5 academic medical centers completed a 3-day train-the-trainer program followed by 2 years of mentoring to implement the initiative. The program consisted of 8-hour communication workshops for bedside nurses and structured rounds in ICUs, where nurse leaders coached bedside nurses in identifying and addressing palliative care needs. Primary outcomes were nurses' ratings of their palliative care communication skills in surveys, and nurses' identification of palliative care needs during coaching rounds. RESULTS: Each center held at least 6 workshops, training 428 bedside nurses. Nurses rated their skill level higher after the workshop for 15 tasks (eg, responding to family distress, ensuring families understand information in family meetings, all P < .01 vs preworkshop). Coaching rounds in each ICU took a mean of 3 hours per month. For 82% of 1110 patients discussed in rounds, bedside nurses identified palliative care needs and created plans to address them. CONCLUSIONS: Communication skills training workshops increased nurses' ratings of their palliative care communication skills. Coaching rounds supported nurses in identifying and addressing palliative care needs.

Preventing Harm in the ICU-Building a Culture of Safety and Engaging Patients and Families.

OBJECTIVE: Preventing harm remains a persistent challenge in the ICU despite evidence-based practices known to reduce the prevalence of adverse events. This review seeks to describe the critical role of safety culture and patient and family engagement in successful quality improvement initiatives in the ICU. We review the evidence supporting the impact of safety culture and provide practical guidance for those wishing to implement initiatives aimed at improving safety culture and more effectively integrate patients and families in such efforts. DATA SOURCES: Literature review using PubMed including evaluation of key studies assessing large-scale quality improvement efforts in the ICU, impact of safety culture on patient outcomes, methodologies for quality improvement commonly used in healthcare, and patient and family engagement. Print and web-based resources from leading patient safety organizations were also searched. STUDY SELECTION: Our group completed a review of original studies, review articles, book chapters, and recommendations from leading patient safety organizations. DATA EXTRACTION: Our group determined by consensus which resources would best inform this review. DATA SYNTHESIS: A strong safety culture is associated with reduced adverse events, lower mortality rates, and lower costs. Quality improvement efforts have been shown to be more effective and sustainable when paired with a strong safety culture. Different methodologies exist for quality improvement in the ICU; a thoughtful approach to implementation that engages frontline providers and administrative leadership is essential for success. Efforts to substantively include patients and families in the processes of quality improvement work in the ICU should be expanded. CONCLUSIONS: Efforts to establish a culture of safety and meaningfully engage patients and families should form the foundation for all safety interventions in the ICU. This review describes an approach that integrates components of several proven quality improvement methodologies to enhance safety culture in the ICU and highlights opportunities to include patients and families.

Confidence with and Barriers to Serious Illness Communication: A National Survey of Hospitalists.

OBJECTIVE: To describe the concerns, confidence, and barriers of practicing hospitalists around serious illness communication. BACKGROUND: Hospitalist physicians are optimally positioned to provide primary palliative care, yet their experiences in serious illness communication are not well described. METHODS: Web-based survey, conducted in May 2016. The survey link was distributed via email to 4000 members of the Society of Hospital Medicine. The 39-item survey assessed frequency of concerns about serious illness communication, confidence for common tasks, and barriers using Likert-type scales. It was developed by the authors based on prior work, a focus group, and feedback from pilot respondents. RESULTS: We received 332 completed surveys. On most or every shift, many participants reported having concerns about a patient's or family's understanding of prognosis (53%) or the patient's code status (63%). Most participants were either confident or very confident in discussing goals of care (93%) and prognosis (87%). Fewer were confident or very confident in responding to patients or families who had not accepted the seriousness of an illness (59%) or in managing conflict (50%). Other frequently cited barriers were lack of time, lack of prior discussions in the outpatient setting, unrealistic prognostic expectations from other physicians, limited institutional support, and difficulty finding records of previous discussions. DISCUSSION: Our results suggest opportunities to improve hospitalists' ability to lead serious illness communication by increasing the time hospitalists have for discussions, improving documentation systems and communication between inpatient and outpatient clinicians, and targeted training on challenging communication scenarios.

The Cambia Sojourns Scholars Leadership Program: Project Summaries from the Inaugural Scholar Cohort.

BACKGROUND: As palliative care grows and evolves, robust programs to train and develop the next generation of leaders are needed. Continued integration of palliative care into the fabric of usual health care requires leaders who are prepared to develop novel programs, think creatively about integration into the current health care environment, and focus on sustainability of efforts. Such leadership development initiatives must prepare leaders in clinical, research, and education realms to ensure that palliative care matures and evolves in diverse ways. METHODS: The Cambia Health Foundation designed the Sojourns Scholar Leadership Program to facilitate leadership development among budding palliative care leaders. RESULTS: The background, aims, and results to date of each of the projects from the scholars of the inaugural cohort are presented.

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.

ICU Bedside Nurses' Involvement in Palliative Care Communication: A Multicenter Survey.

CONTEXT: Successful and sustained integration of palliative care into the intensive care unit (ICU) requires the active engagement of bedside nurses. OBJECTIVES: To describe the perspectives of ICU bedside nurses on their involvement in palliative care communication. METHODS: A survey was designed, based on prior work, to assess nurses' perspectives on palliative care communication, including the importance and frequency of their involvement, confidence, and barriers. The 46-item survey was distributed via e-mail in 2013 to bedside nurses working in ICUs across the five academic medical centers of the University of California, U.S. RESULTS: The survey was sent to 1791 nurses; 598 (33%) responded. Most participants (88%) reported that their engagement in discussions of prognosis, goals of care, and palliative care was very important to the quality of patient care. A minority reported often discussing palliative care consultations with physicians (31%) or families (33%); 45% reported rarely or never participating in family meeting discussions. Participating nurses most frequently cited the following barriers to their involvement in palliative care communication: need for more training (66%), physicians not asking their perspective (60%), and the emotional toll of discussions (43%). CONCLUSION: ICU bedside nurses see their involvement in discussions of prognosis, goals of care, and palliative care as a key element of overall quality of patient care. Based on the barriers participants identified regarding their engagement, interventions are needed to ensure that nurses have the education, opportunities, and support to actively participate in these discussions.

Communicating with Patients' Families and Physicians About Prognosis and Goals of Care.

BACKGROUND: Integrating palliative care into intensive care requires active involvement of bedside nurses in discussions of patients' prognosis and goals of care. OBJECTIVE: To improve critical care nurses' skills and confidence to engage in discussions with patients' families and physicians about prognosis and goals of care by using a focused educational intervention. METHODS: An 8-hour-long workshop was developed for critical care nurses. Key roles and skills of nurses in communication about prognosis and goals of care were defined. Participants practiced skills during facilitated role-plays. A reflection session addressed burnout, distress, and self-care. Participants completed surveys before, immediately after, and 3 months after their workshop, rating their confidence and skill in performing key tasks. Use of a participant focus group and open-response items in the surveys further elucidated the impact of the workshop. RESULTS: Between March 2011 and April 2013, a total of 82 critical care nurses completed a workshop. Compared with before the workshop, after the workshop, nurses reported greater skill and confidence for 14 survey items (P < .001), including assessing families' understanding of prognosis and goals of care, addressing families' emotional needs, and contributing to family meetings. Increases were sustained 3 months after the workshop. CONCLUSION: Defining roles and providing opportunities for skills practice and reflection can enhance nurses' confidence to engage in discussions about prognosis and goals of care.