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.

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.

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.

Dancing around death: hospitalist-patient communication about serious illness.

Hospital physicians care for most seriously ill patients in the United States. We employed dimensional analysis to describe communication about death and dying in audio-recorded admission encounters between seriously ill patients and hospitalists. Acknowledging or not acknowledging the possibility of dying emerged as a key process. Acknowledgment was rare, and depended on synergistic communication behaviors between patient and physician. Facilitators included patients cuing for information and disclosing emotional distress, and physicians exploring the patient's understanding of his or her illness and emotional distress. When hospitalists focused on acute issues, stated that they were awaiting test results, and deferred to other physicians, discussion moved away from acknowledgment. Meaningful discussion of end-of-life issues, including goals and values, fears about death and dying, prognosis, and options for palliative care followed open acknowledgment. This acknowledgment process can serve as a guide for providers to sensitively and honestly discuss essential end-of-life issues.

Code status discussions between attending hospitalist physicians and medical patients at hospital admission.

BACKGROUND: Bioethicists and professional associations give specific recommendations for discussing cardiopulmonary resuscitation (CPR). OBJECTIVE: To determine whether attending hospitalist physicians' discussions meet these recommendations. DESIGN: Cross-sectional observational study on the medical services at two hospitals within a university system between August 2008 and March 2009. PARTICIPANTS: Attending hospitalist physicians and patients who were able to communicate verbally about their medical care. MAIN MEASURES: We identified code status discussions in audio-recorded admission encounters via physician survey and review of encounter transcripts. A quantitative content analysis was performed to determine whether discussions included elements recommended by bioethicists and professional associations. Two coders independently coded all discussions; Cohen's kappa was 0.64-1 for all reported elements. KEY RESULTS: Audio-recordings of 80 patients' admission encounters with 27 physicians were obtained. Eleven physicians discussed code status in 19 encounters. Discussions were more frequent in seriously ill patients (OR 4, 95% CI 1.2-14.6), yet 66% of seriously ill patients had no discussion. The median length of the code status discussions was 1 min (range 0.2-8.2). Prognosis was discussed with code status in only one of the encounters. Discussions of patients' preferences focused on the use of life-sustaining interventions as opposed to larger life goals. Descriptions of CPR as an intervention used medical jargon, and the indication for CPR was framed in general, as opposed to patient-specific scenarios. No physician quantitatively estimated the outcome of or provided a recommendation about the use of CPR. CONCLUSIONS: Code status was not discussed with many seriously ill patients. Discussions were brief, and did not include elements that bioethicists and professional associations recommend to promote patient autonomy. Local and national guidelines, research, and clinical practice changes are needed to clarify and systematize with whom and how CPR is discussed at hospital admission.

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.

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.

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.

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.

Posttraumatic stress and complicated grief in family members of patients in the intensive care unit.

BACKGROUND: Family members of patients in intensive care units (ICUs) are at risk for mental health morbidity both during and after a patient's ICU stay. OBJECTIVES: To determine prevalences of and factors associated with anxiety, depression, posttraumatic stress and complicated grief in family members of ICU patients. DESIGN: Prospective, longitudinal cohort study. PARTICIPANTS: Fifty family members of patients in ICUs at a large university hospital participated. MEASUREMENTS: We used the Control Preferences Scale to determine participants' role preferences for surrogate decision-making. We used the Hospital Anxiety and Depression Scale, Impact of Event Scale, and Inventory of Complicated Grief to measure anxiety and depression (at enrollment, 1 month, 6 months), posttraumatic stress (6 months), and complicated grief (6 months). RESULTS: We interviewed all 50 participants at enrollment, 39 (78%) at 1 month, and 34 (68%) at 6 months. At the three time points, anxiety was present in 42% (95% CI, 29-56%), 21% (95% CI, 10-35%), and 15% (95% CI, 6-29%) of participants. Depression was present in 16% (95% CI, 8-28%), 8% (95% CI, 2-19%), and 6% (95% CI, 1-18%). At 6 months, 35% (95% CI, 21-52%) of participants had posttraumatic stress. Of the 38% who were bereaved, 46% (95% CI, 22-71%) had complicated grief. Posttraumatic stress was not more common in bereaved than nonbereaved participants, and neither posttraumatic stress nor complicated grief was associated with decision-making role preference or with anxiety or depression during the patient's ICU stay. CONCLUSIONS: Symptoms of anxiety and depression diminished over time, but both bereaved and nonbereaved participants had high rates of posttraumatic stress and complicated grief. Family members should be assessed for posttraumatic stress and complicated grief.

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.

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.

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.

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.

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.

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.

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.