Inpatient Understanding of Their Care Team and Receipt of Mixed Messages: a Two-Site Cross-Sectional Study.

BACKGROUND: Patient understanding of their care, supported by physician involvement and consistent communication, is key to positive health outcomes. However, patient and care team characteristics can hinder this understanding. OBJECTIVE: We aimed to assess inpatients' understanding of their care and their perceived receipt of mixed messages, as well as the associated patient, care team, and hospitalization characteristics. DESIGN: We administered a 30-item survey to inpatients between February 2020 and November 2021 and incorporated other hospitalization data from patients' health records. PARTICIPANTS: Randomly selected inpatients at two urban academic hospitals in the USA who were (1) admitted to general medicine services and (2) on or past the third day of their hospitalization. MAIN MEASURES: Outcome measures include (1) knowledge of main doctor and (2) frequency of mixed messages. Potential predictors included mean notes per day, number of consultants involved in the patient's care, number of unit transfers, number of attending physicians, length of stay, age, sex, insurance type, and primary race. KEY RESULTS: A total of 172 patients participated in our survey. Most patients were unaware of their main doctor, an issue related to more daily interactions with care team members. Twenty-three percent of patients reported receiving mixed messages at least sometimes, most often between doctors on the primary team and consulting doctors. However, the likelihood of receiving mixed messages decreased with more daily interactions with care team members. CONCLUSIONS: Patients were often unaware of their main doctor, and almost a quarter perceived receiving mixed messages about their care. Future research should examine patients' understanding of different aspects of their care, and the nature of interactions that might improve clarity around who's in charge while simultaneously reducing the receipt of mixed messages.

Palliative Care Clinician Overestimation of Survival in Advanced Cancer: Disparities and Association With End-of-Life Care.

CONTEXT: Clinicians frequently overestimate survival time in serious illness. OBJECTIVE: The objective of this study was to understand the frequency of overestimation in palliative care (PC) and the relation with end-of-life (EOL) treatment. METHODS: This is a multisite cohort study of 230 hospitalized patients with advanced cancer who consulted with PC between 2013 and 2016. We asked the consulting PC clinician to make their "best guess" about the patients' "most likely survival time, assuming that their illnesses are allowed to take their natural course" (<24 hours; 24 hours to less than two weeks; two weeks to less than three months; three months to less than six months; six months or longer). We followed patients for up to six month for mortality and EOL treatment utilization. Patients completed a brief interviewer-facilitated questionnaire at study enrollment. RESULTS: Median survival was 37 days (interquartile range: 12 days, 97 days) and 186/230 (81%) died during the follow-up period. Forty-one percent of clinicians' predictions were accurate. Among inaccurate prognoses, 85% were overestimates. Among those who died, overestimates were substantially associated with less hospice use (ORadj: 0.40; 95% CI: 0.16-0.99) and later hospice enrollment (within 72 hours of death ORadj: 0.33; 95% CI: 0.15-0.74). PC clinicians were substantially more likely to overestimate survival for patients who identified as Black or Latino compared to others (ORadj: 3.89; 95% CI: 1.64-9.22). EOL treatment preferences did not explain either of these findings. CONCLUSION: Overestimation is common in PC, associated with lower hospice use and a potentially mutable source of racial/ethnic disparity in EOL care.

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.

Feeling Heard and Understood: A Patient-Reported Quality Measure for the Inpatient Palliative Care Setting.

CONTEXT: As endorsed by the palliative care "Measuring What Matters" initiative, capturing patients' direct assessment of their care is essential for ongoing quality reporting and improvement. Fostering an environment where seriously ill patients feel heard and understood is of crucial importance to modern health care. OBJECTIVES: To describe the development and performance of a self-report field measure for seriously ill patients to report how well they feel heard and understood in the hospital environment. METHODS: As part of a larger ongoing cohort study of inpatient palliative care, we developed and administered the following point-of-care item: "Over the past two days, how much have you felt heard and understood by the doctors, nurses and hospital staff?" (completely, quite a bit, moderately, slightly, not at all). Participants completed the measure before and the day after palliative care consultation. For the postconsultation version, we changed the time frame from "past two days" to "today." RESULTS: One hundred sixty patients with advanced cancer completed the preconsultation assessment, and 87% of them completed the postconsultation version. Responses encompassed full use of the ordinal scale, did not exhibit ceiling or floor effects, and showed improvement from preassessment to postassessment. The item was quick to administer and easy for patients to complete. CONCLUSION: The "Heard & Understood" item is a promising self-report quality measure for the inpatient palliative care setting.

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.

Design of, and enrollment in, the palliative care communication research initiative: a direct-observation cohort study.

BACKGROUND: Understanding the characteristics of communication that foster patient-centered outcomes amid serious illness are essential for the science of palliative care. However, epidemiological cohort studies that directly observe clinical conversations can be challenging to conduct in the natural setting. We describe the successful enrollment, observation and data collection methods of the ongoing Palliative Care Communication Research Initiative (PCCRI). METHODS: The PCCRI is a multi-site cohort study of naturally occurring inpatient palliative care consultations. The 6-month cohort data includes directly observed and audio-recorded palliative care consultations (up to first 3 visits); patient/proxy/clinician self-report questionnaires both before and the day after consultation; post-consultation in-depth interviews; and medical/administrative records. RESULTS: One hundred fourteen patients or their proxies enrolled in PCCRI during Enrollment Year One (of Three). Seventy percent of eligible patients/proxies were invited to hear about a communication research study (188/269); 60% of them ultimately enrolled in the PCCRI (114/188), resulting in a 42% sampling proportion (114/269 eligible). All PC clinicians at study sites were invited to participate; all 45 participated. CONCLUSIONS: Epidemiologic study of patient-family-clinician communication in palliative care settings is feasible and acceptable to patients, proxies and clinicians. We detail the successful PCCRI methods for enrollment, direct observation and data collection for this complex "field" environment.

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.

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.

Seriously ill hospitalized patients' perspectives on the benefits and harms of two models of hospital CPR discussions.

OBJECTIVE: To describe seriously ill patients' perspectives on expert-endorsed approaches for hospital cardiopulmonary resuscitation (CPR) discussions. METHODS: We created two videos depicting a hospital doctor discussing CPR with a seriously ill patient. One depicted a values-based approach with a doctor's recommendation, and one an information-focused approach without a recommendation. During semi-structured interviews, 20 seriously ill hospitalized patients viewed and commented on both videos. We conducted a thematic analysis to describe benefits and harms of specific discussion components. RESULTS: Half of participants reported no preference between the videos; 35% preferred the information-focused, and 15% the values-based. Participants' reactions to the discussion components varied. They identified both benefits and harms with components in both videos, though most felt comfortable with all components (range, 60-65%) except for the doctor's recommendation in the values-based video. Only 40% would feel comfortable receiving a recommendation, while 65% would feel comfortable with the doctor eliciting their CPR preference as in the information-focused video, p=0.03. CONCLUSION: Participants' reactions to expert-endorsed discussion components varied. Most would feel uncomfortable receiving a doctor's recommendation about CPR. PRACTICE IMPLICATIONS: Participants' varied reactions suggest the need to tailor CPR discussions to individual patients. Many patients may find doctor's recommendations to be problematic.

Why should I talk about emotion? Communication patterns associated with physician discussion of patient expressions of negative emotion in hospital admission encounters.

OBJECTIVE: To describe hospital-based physicians' responses to patients' verbal expressions of negative emotion and identify patterns of further communication associated with different responses. METHODS: Qualitative analysis of physician-patient admission encounters audio-recorded between August 2008 and March 2009 at two hospitals within a university system. A codebook was iteratively developed to identify patients' verbal expressions of negative emotion. We categorized physicians' responses by their immediate effect on further discussion of emotion - focused away (away), focused neither toward nor away (neutral), and focused toward (toward) - and examined further communication patterns following each response type. RESULTS: In 79 patients' encounters with 27 physicians, the median expression of negative emotion was 1, range 0-14. Physician responses were 25% away, 43% neutral, and 32% toward. Neutral and toward responses elicited patient perspectives, concerns, social and spiritual issues, and goals for care. Toward responses demonstrated physicians' support, contributing to physician-patient alignment and agreement about treatment. CONCLUSION: Responding to expressions of negative emotion neutrally or with statements that focus toward emotion elicits clinically relevant information and is associated with positive physician-patient relationship and care outcomes. PRACTICE IMPLICATIONS: Providers should respond to expressions of negative emotion with statements that allow for or explicitly encourage further discussion of emotion.

"I'm sitting here by myself ...": experiences of patients with serious illness at an Urban Public Hospital.

OBJECTIVE: To describe experiences of serious illness including concerns, preferences, and perspectives on improving end-of-life (EOL) care in underserved inpatients. METHODS: Qualitative analysis of 1-hour interviews with inpatients at a public hospital whose physician "would not be surprised" by the patient's death or intensive care unit (ICU) admission within a year. Patients who were non-English speaking, lacked mental capacity, or had uncontrolled symptoms were excluded. A semistructured interview guide was developed and used for all interviews. We digitally recorded, transcribed, and conducted a thematic analysis of the interviews. RESULTS: Twenty patients participated. Difficult events such as estrangement, homelessness, substance abuse, and imprisonment shaped patients' approaches to serious illness. This influence manifested in interpersonal relationships, conceptualizations of death and concerns about dying, and approaches to coping with EOL. Because patients lacked social support, providers played significant roles at EOL. Patients preferred honest communication with providers and sharing in medical decision-making. A prolonged dying process was feared more than sudden death. Concerns included pain, dying in the hospital, and feeling unwelcome in the hospital. Patients coped by advocating for their own care, engaging with religion/spirituality, and viewing illness as similar to past trauma. Participants suggested that providers listen to their concerns and requested accessible chaplaincy and home-based services. CONCLUSIONS: Providers should consider that difficult life events influence underserved patients' approaches to dying. Attention to patients' specific preferences and palliative care in public hospitals and locations identified as home may improve care for patients who lack social support.