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Context: Cardiopulmonary resuscitation is one of the most important end-of-life care decisions. However, the experience of bereaved families during code status discussions is not well documented.Objective: The aims of this study were to describe the degree of emotional distress of bereaved families when discussing code status, identify their perceived areas for improvement and determine associated factors.Methods: This study is part of a nationwide post-bereavement survey, the Japan Hospice and Palliative care Evaluation 3 (J-HOPE3) study. Questionnaires were sent to the relatives of cancer patients who had died in palliative care units in Japan in 2014.Results: From an analysis of 338 questionnaires, 37% of families reported high emotional distress during code status discussions and 32% reported a need for improvement. Multiple logistic regression analyses revealed the following were associated with high-level distress: the family had hoped for the miraculous and spontaneous recovery of the patient (odds ratio [OR] 2.4, 95% confidence interval [CI] 1.31-4.43, P = 0.0049), the family felt they could not voice their opinion about Cardiopulmonary resuscitation (OR 2.07, CI 1.12-3.81, P = 0.02), or the physician failed to adapt the explanation to the family's preparation level (OR 0.36, CI 0.18-0.68, P = 0.0015). Factors identified for improvement were: holding discussions in a relaxing atmosphere conducive to questioning (OR 0.36, CI 0.16-0.80, P = 0.012), and ensuring the physician adapted the explanation to the family's preparation level (OR 0.47, CI 0.23-0.96, P = 0.037).Conclusion: We recommend the development of educational programs for code status discussions to improve the experience of bereaved family members. [ABSTRACT FROM AUTHOR]

Context: Parents desire more opportunities for advance care planning (ACP), however, large-scale adoption of ACP for seriously ill children remains unrealized. Little is known about current approaches to ACP and strategies to circumvent existing barriers to ACP provision.Objective: To explore multidisciplinary clinician perceptions about perceived barriers and strategies to improve ACP provision.Design: Qualitative study including focus groups conducted with multidisciplinary clinicians at two centers from December 2018-April 2019. Iterative multi-stage thematic analyses were utilized to identify key contexts and themes pertaining to current approaches to ACP, as well as clinician perspectives on ACP barriers and improvement strategies.Results: Thirty-five clinicians (physicians, nurses, and psychosocial clinicians) participated in identifying both clinician and perceived patient and family barriers to initiating and engaging in ACP discussions, including mixed messaging, lack of knowledge of patient and family goals, prognostic uncertainty, poor prognostic awareness, unstandardized documentation, and family dynamics. Clinicians also identified strategies to overcome these barriers and to facilitate ACP discussions, including enhancing multidisciplinary communication, creation of a shared ACP communication framework, and formal training in ACP communication to normalize ACP throughout a child's disease trajectory.Conclusion: Despite ubiquitous recognition of the importance of ACP communication, various clinician- and parent-level barriers were identified which impede ACP in children with serious illness and their families. Improvement strategies should focus on formal clinician training on how to conduct and document longitudinal ACP discussions to ensure care is aligned with family goals and values. [ABSTRACT FROM AUTHOR]

Background: For US patients with limited English proficiency (LEP), diversity of language and culture can create potential health care disparities in discussions of prognosis and goals of care. Although professional medical interpreters are often thought of as language conduits, they are also trained as clarifiers and mediators of cultural barriers between providers, patients and their families. Identifying interpreter challenges in Palliative Care (PC) conversations and brainstorming and rehearsing solutions could improve their confidence interpreting PC encounters and being cultural mediators.Measures: Pre- and Pre/Postintervention PC confidence questionnaires.Intervention: six-session monthly dialogue-based course.Outcomes: Interpreters showed significant increases in postintervention confidence in PC communication compared with pre-intervention (z = -5.646, P< 0.000).Conclusions/lessons Learned: This dialogue-based intervention eliciting ongoing interpreter challenges, with PC social work facilitation and role-play with PC clinicians in a mutually respectful environment, significantly improved interpreter confidence in partnering with clinicians in PC conversations. [ABSTRACT FROM AUTHOR]

Context: Patient-provider communication impacts how patients with cancer make decisions about treatment.Objectives: To examine patient perceptions of discussions, decision-making, and psychosocial burdens related to receiving palliative radiotherapy (RT), in order to inform best practices for communication about palliative RT.Methods: We conducted an exploratory qualitative study using oral questionnaires and semi-structured interviews. Seventeen patients receiving their first course of palliative RT for lung or bone metastases at a comprehensive cancer center were interviewed. Patient interviews were transcribed verbatim and thematically analyzed using NVivo software.Results: Themes that impacted patients' decisions to initiate RT included a desire to minimize pain, optimism about what RT could provide for the future, perception of having "no other choice," disappointment about cancer progression, and unfamiliarity with RT. Most patients preferred shared decision-making regarding RT initiation and reported patient empowerment, effective communication, and team collaboration as contributing to shared decision-making. Most patients preferred their physicians to make decisions about RT treatment intensity and described trust in their physicians, institutional reputation, and RT expertise as motivators for this preference. Patients who possessed a proactive decisional mindset about initiating RT as opposed to having "no other choice" were less likely to report experiencing psychosocial burdens.Conclusion: Most patients prefer shared decision-making regarding RT initiation but prefer their radiation oncologists to make decisions regarding treatment intensity. Communication that empowers patients in their desired level of engagement for RT decision-making may help patients make informed decisions, contribute toward a proactive decisional mindset, and reduce their perception of psychosocial burdens. [ABSTRACT FROM AUTHOR]

Context: The relationship between quality of Goals of Care (GOC) conversations and moral distress among neonatal intensive care unit (NICU) providers is not known.Objectives: We sought 1) to explore levels of moral distress in providers, 2) to evaluate how staff moral distress changes in relation to GOC discussions, and 3) to identify elements of GOC discussions associated with change in moral distress. We hypothesized that staff moral distress would change after GOC discussions and that change would vary with presence of key discussion elements.Methods: Prospective cohort study in a level IV NICU in an urban teaching hospital. We administered validated instruments at baseline and following GOC discussions including the Moral Distress Thermometer (MDT) and Williams Instrument (a measure of end-of-life care) to physicians, nurses, and social workers.Results: We collected data on 79 GOC conversations over a 1-year period from 2018 to 2019. Most providers experienced an increase in moral distress following a GOC discussion. Providers experienced an average increase in moral distress, as measured by the MDT, of 0.84 (+/-3.15; P = 0.002). Physicians experienced an average change in moral distress of 1.1 (+/-3.52; P = 0.01) while nurses experienced an average change of 0.55 (+/-2.66; P = 0.07). Several elements of discussions were associated with the degree of increase in moral distress after the conversation.Conclusion: Change in moral distress among providers may be a useful metric of quality of GOC discussions. There are identifiable elements of GOC conversations that are associated with high-quality discussions. These elements warrant further study. [ABSTRACT FROM AUTHOR]

Context: We reviewed the Veterans Health Administration Bereaved Family Survey's open-ended responses to understand end-of-life (EOL) care best practices for Vietnam and pre-Vietnam Veterans.Objectives: To identify 1) recommendations for improved EOL care enhancements for older Veterans, 2) a model of best practices in EOL care for Veterans, and 3) any relevant differences in best practices between Vietnam and prior war eras.Methods: We examined five years of Bereaved Family Survey data (n = 2784), collected between 2013 and 2017, from bereaved family members of Veterans focusing on 2 open-ended questions: 1) Is there anything else you would like to share about the Veteran's care during his last month of life? 2) Is there anything else you would like to share about how the care could have been improved for the Veteran? Applied thematic analysis identified successes and challenges in the experience of the bereaved of Vietnam and pre-Vietnam era Veterans.Results: Regardless of war era and death venue, a patient-centered approach to EOL care with readily available staff who could 1) provide ongoing support, comfort, honor, and validation; 2) routinely adjust to the patient's changing needs; 3) and provide clear, honest, timely, compassionate communication was important to the bereaved. Consideration of the uniqueness of Vietnam Veterans is beneficial.Conclusions: Patient-centered EOL care should include assigning a point of contact that follows the patient, educates the family on expectations, ensures the patient's changing needs are met, ensures the family has appropriate support, and communicates updates to the family throughout the patient's care continuum. [ABSTRACT FROM AUTHOR]

Context: With rising concerns about quality of care in hospice, federal agencies recently began mandating quality measurement in hospice, including measures of advance care planning (ACP).Objectives: To characterize hospice providers' experiences with ACP quality measurement and their reflections on ways to improve it.Methods: Semi-structured in-depth interviews of fifty-one hospice providers from various clinical backgrounds and organizational roles in four geographically diverse non-profit, community-based hospices in the U.S. Participants were queried about their experiences with and barriers to ACP quality measurement processes in their organization, opinions about the impacts of federally mandated quality measures, and ideas for improvement. Data were analyzed using thematic analysis with an interdisciplinary team, facilitated by ATLAS.ti and Excel.Results: Four key findings of the ACP quality measurement experience for hospice staff included variation, barriers, attitudes, and recommendations for improvement. 1) Variation: Within and across organizations, participants applied a variety of processes to measure ACP quality, and exposure to and experiences with quality measurement varied based on organizational role. 2) Barriers: ACP quality measurement was impeded by limited resources, technological problems, and measurement challenges. 3) Attitudes: Participants' opinions of recently implemented federally mandated requirements for ACP quality measurement highlighted numerous downsides, unintended consequences, and few upsides. 4) Recommendations: improvements included personalizing ACP quality measures, elevating the importance of quality measurement, and streamlining processes.Conclusion: Hospice staff take ACP quality measurement seriously, but insufficient organizational resources and regulatory bureaucracy create challenges. Efforts to enhance ACP quality measure nuance and assess outcomes are needed to improve care. [ABSTRACT FROM AUTHOR]

When assuming care for a seriously ill hospitalized patient, we should find documentation of previous decisions about goals of care so that our conversation takes advantage of previous discussions and reduces decision-making burden on the patient, particularly when the patient is clinically declining and time is short. This article presents a framework to help clinicians incorporate prior goals of care conversations into decision-making for an acutely ill patient. When there is strong evidence that a previous decision still applies, clinicians should, after a brief check-in about the previous decision with the patient, then present a plan consistent with their previous decision as a default option, to which they can opt out. If there is less evidence of the basis for a previous decision, clinicians should explore the thinking behind the decision and, if there is clarity about patient preferences, propose a treatment plan. If there is conflict or uncertainty about the patient's preferences, clinicians should engage in a more comprehensive goals-of-care conversation, which involves exploring the patient's understanding of their illness, patient values, and reasonable treatment options, before offering a plan. By giving the patient the ability to opt out of a previous decision they made about goals of care, rather than another choice, we make it more likely that they will receive care consistent with their known wishes. [ABSTRACT FROM AUTHOR]

Context: Accurate prognostic understanding is associated with increased advance care planning, symptom control, and patient autonomy in oncology. The impact of prognostic understanding on patients' health information preferences (HIPs) and prognostic information preferences is unknown and has important implications for health care communication.Objectives: The present study characterized the HIPs of patients with advanced cancer; examined differences in HIPs between patients with varying curability beliefs; and identified differences in the characteristics and psychological well-being of patients with varying curability beliefs.Methods: This cross-sectional study used a secondary data analysis of baseline data (prerandomization) for patients enrolled in a large randomized controlled psychotherapy trial. 206 participants were recruited from outpatient clinics at a single facility. Inclusion criteria included: 18 years and older; English speaking, Stage IV solid tumor cancer, and Distress Thermometer score of ≥4.Results: Most participants preferred as many details as possible about their diagnosis and treatment (69.4%; n = 143), and the likely outcome of their disease (72.3%; n = 149). Most participants accurately described their cancer as unlikely curable or incurable (62.6%; n = 129). There were no significant differences in HIPs based on level of prognostic understanding. Poorer prognostic understanding was associated with religiosity and better quality of life and existential well-being.Conclusion: In the present study, prognostic understanding (i.e., curability beliefs) was not associated with HIPs. Therefore, oncology clinicians must individually and interatively evaluate patients' interest and preferences for receiving information. Future research should further clarify preferences for the framing and content of prognostic information from providers and improve the measurement of prognostic understanding to facilitate patient-centered end-of-life care. [ABSTRACT FROM AUTHOR]

Context: Spokespersons serving as surrogate decision makers for their loved ones report high levels of stress. Despite known benefits, advance care planning (ACP) conversations often do not occur. More information is needed to understand spokesperson stress during ACP.Objectives: To explore if and how spokespersons perceive stress related to ACP conversations; compare factors related to stress; and assess whether ACP intervention impacted stress.Methods: Secondary and mixed-methods analysis with data transformation of semistructured interviews occurring during a 2 × 2 factorial (four armed) randomized controlled trial that compared standard online ACP to a comprehensive online ACP decision aid. Tools were completed by patients with advanced illness (n = 285) alone or with their spokesperson (n = 285). About 200 spokesperson interviews were purposively sampled from each of the four arms (50 per arm).Results: ACP conversations were reported as stressful by 54.41% (74 of 136) and nonstressful by 45.59% (62 of 136). Five themes impacting spokesperson stress were the nature of the relationship with their loved one; self-described personality and belief systems; knowledge and experience with illness and ACP conversations; attitude toward ACP conversations; and social support in caregiving and decision making. No significant differences in stress were associated with arm assignment.Conclusion: Identifying what factors impact spokesperson stress in ACP conversations can be used to help design ACP interventions to more appropriately address the needs and concerns of spokespersons. [ABSTRACT FROM AUTHOR]

The coronavirus disease 2019 (COVID-19) pandemic has refocused our attention on health care disparities affecting patients of color, with a growing body of literature focused on the etiology of these disparities and strategies to eliminate their effects. In considering the unique impact COVID-19 is having on African American communities, added measure must be given to ensure for sensitivity, empathy, and supportive guidance in medical decision making among African American patients faced with critical illness secondary to COVID-19. In this article, we explore the applications of cultural humility over cultural competency in optimizing the care we provide to African American patients faced with critical health care decisions during this pandemic. In turn, we charge one another as health care providers to consider how ethical principles and guidance can be applied to honor African American patients' unique stories and experiences. [ABSTRACT FROM AUTHOR]

Context: Telemedicine has the potential to extend care reach and access to home-based hospice services for children. Few studies have explored nurse perspectives regarding this communication modality for rural pediatric cohorts.Objectives: The objective of this qualitative study was to learn from the experiences of rural hospice nurses caring for children at the end of life using telehealth modalities to inform palliative communication.Methods: Voice-recorded qualitative interviews with rural hospice nurse telehealth users inquiring on nurse experiences with telehealth. Semantic content analysis was used.Results: About 15 hospice nurses representing nine rural hospice agencies were interviewed. Nurses participated in an average of eight telehealth visits in the three months prior. Nurses were female with a mean age of 38 years and an average of seven years of hospice nursing experience. Five themes about telehealth emerged: accessible support, participant inclusion, timely communication, informed and trusted planning, and familiarity fostered. Each theme had both benefits and cautions associated as well as telehealth suggestions. Nurses recommended individualizing communication, pacing content, fostering human connection, and developing relationships even with technology use.Conclusion: The experiences of nurses who use telehealth in their care for children receiving end-of-life care in rural regions may enable palliative care teams to understand both the benefits and challenges of telehealth use. Nurse insights on telehealth may help palliative care teams better honor the communication needs of patients and families while striving to improve care access. [ABSTRACT FROM AUTHOR]

Context: Children with chronic critical illness (CCI) have repeated and prolonged hospitalizations. Discrete communication challenges characterize their inpatient care.Objectives: Develop, implement, and evaluate a communication training for inpatient clinicians managing pediatric CCI.Methods: A one-day communication training for interdisciplinary clinicians, incorporating didactic sessions and simulated family and interdisciplinary team meetings.Results: Learners had an average of 11 years' clinical experience. About 34% lacked prior communication training relevant to pediatric CCI. Mean baseline competence across communication skills was 2.6 (range 2.4-3.2), corresponding to less than somewhat prepared; after the training, this increased to a mean of 4.0 (range 3.5-4.5), corresponding to well prepared. Skills with greatest improvement included conducting a family meeting, delivering bad news, discussing stopping intensive care, and end-of-life communication. After one month, perceived competence was sustained for seven of 10 skills; for remaining skills, perceived competence scores decreased by 0.1-0.2. About 100% of learners would recommend the training to colleagues; 89% advocated it for all clinicians caring for children with CCI.Conclusion: Interdisciplinary communication training regarding long stay patients is feasible and valued by novice and seasoned clinicians. The novel integration of intrateam communication skills alongside team-family skills reflects the reality that the care of children with CCI challenges clinicians to communicate well with each other and families. Teaching interdisciplinary teams to share communication skills has the potential to overcome reported limitations of existing inpatient discussions, which can be dominated by one or two physicians and lack contributions from diverse team members. [ABSTRACT FROM AUTHOR]

Context: Preparation for an impending death through end-of-life (EOL) discussions and human presence when a person is dying is important for both patients and families.Objectives: The aim was to study whether EOL discussions were offered and to what degree patients were alone at time of death when dying from coronavirus disease 2019 (COVID-19), comparing deaths in nursing homes and hospitals.Methods: The national Swedish Register of Palliative Care was used. All expected deaths from COVID-19 in nursing homes and hospitals were compared with, and contrasted to, deaths in a reference population (deaths in 2019).Results: A total of 1346 expected COVID-19 deaths in nursing homes (n = 908) and hospitals (n = 438) were analyzed. Those who died were of a more advanced age in nursing homes (mean 86.4 years) and of a lower age in hospitals (mean 80.7 years) (P < 0.0001). Fewer EOL discussions with patients were held compared with deaths in 2019 (74% vs. 79%, P < 0.001), and dying with someone present was much more uncommon (59% vs. 83%, P < 0.0001). In comparisons between nursing homes and hospital deaths, more patients dying in nursing homes were women (56% vs. 37%, P < 0.0001), and significantly fewer had a retained ability to express their will during the last week of life (54% vs. 89%, P < 0.0001). Relatives were present at time of death in only 13% and 24% of the cases in nursing homes and hospitals, respectively (P < 0.001). The corresponding figures for staff were 52% and 38% (P < 0.0001).Conclusion: Dying from COVID-19 negatively affects the possibility of holding an EOL discussion and the chances of dying with someone present. This has considerable social and existential consequences for both patients and families. [ABSTRACT FROM AUTHOR]

Context: The COVID-19 pandemic has highlighted the essential role of palliative care to support the delivery of compassionate, goal-concordant patient care. We created the Web-based application, PalliCOVID (https://pallicovid.app/), in April 2020 to provide all clinicians with convenient access to palliative care resources and support. PalliCOVID features evidence-based clinical guidelines, educational content, and institutional protocols related to palliative care for COVID-19 patients. It is a publicly available resource accessible from any mobile device or desktop computer that provides clinicians with access to palliative care guidance across a variety of care settings, including the emergency department, hospital ward, intensive care unit, and primary care practice.Objective: The primary objective of this study was to evaluate usage patterns of PalliCOVID to understand user behavior in relation to this palliative care content platform during the period of the local peak of COVID-19 infection in Massachusetts.Methods: We retrospectively analyzed deidentified usage data collected by Google Analytics from the first day of PalliCOVID's launch on April 7, 2020, until May 1, 2020, the time period that encompassed the local peak of the COVID-19 surge in Massachusetts. User access data were collected and summarized by using Google Analytics software that had been integrated into the PalliCOVID Web application.Results: A total of 2042 users accessed PalliCOVID and viewed 4637 pages from April 7 to May 1, 2020. Users spent an average of 2 minutes and 6 seconds per session. Eighty-one percent of users were first-time visitors, while the remaining 19% were return visitors. Most users accessed PalliCOVID from the United States (87%), with a large proportion of users coming from Boston and the surrounding cities (32% of overall users).Conclusions: PalliCOVID is one example of a scalable digital health solution that can bring palliative care resources to frontline clinicians. Analysis of PalliCOVID usage patterns has the potential to inform the improvement of the platform to better meet the needs of its user base and guide future dissemination strategies. The quantitative data presented here, although informative about user behavior, should be supplemented with future qualitative research to further define the impact of this tool and extend our ability to deliver clinical care that is compassionate, rational, and well-aligned with patients' values and goals. [ABSTRACT FROM AUTHOR]

Context: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer.Objectives: To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.Methods: We conducted a prospective cohort study at nine pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high-risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify high-intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, and Asian/other race) parents.Results: About 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (odds ratio [OR] = 0.19; 95% CI = 0.06-0.63; P = 0.006) and the fact that current treatment was unlikely to offer cure (OR = 0.07; 95% CI = 0.02-0.27; P < 0.0001). Children of minority parents were more likely to experience high-intensity medical care (OR = 3.01; 95% CI = 1.29-7.02; P = 0.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with high-intensity medical care (adjusted odds ratio = 2.14; 95% CI = 0.84-5.46; P = 0.11), although power to detect an association was limited.Conclusion: Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high-intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations. [ABSTRACT FROM AUTHOR]

Family support is more, not less, important during crisis. However, during the COVID-19 pandemic, maintaining public safety necessitates restricting the physical presence of families for hospitalized patients. In response, health systems must rapidly adapt family-centric procedures and tools to circumvent restrictions on physical presence. Strategies for maintaining family integrity must acknowledge clinicians' limited time and attention to devote to learning new skills. Internet-based solutions can facilitate the routine, predictable, and structured communication, which is central to family-centered care. But the reliance on technology may compromise patient privacy and exacerbate racial, socioeconomic, and geographic disparities for populations that lack access to reliable internet access, devices, or technological literacy. We provide a toolbox of strategies for supporting family-centered inpatient care during physical distancing responsive to the current clinical climate. Innovations in the implementation of family involvement during hospitalizations may lead to long-term progress in the delivery of family-centered care. [ABSTRACT FROM AUTHOR]

Context: Most children with cancer die in hospital settings, without hospice, and many suffer from high-intensity medical interventions and pain at end of life (EOL).Objectives: To examine the effects of COMPLETE: a communication plan early through EOL to increase hospice enrollment in children with cancer at EOL.Methods: This is a two-phase, single-arm, two-center, and prospective pilot study of hospice enrollment in children with cancer whose parents received COMPLETE. COMPLETE is a series of medical doctor (MD)/registered nurse (RN)-guided discussions of goals of care using visual aids that begin at diagnosis. COMPLETE training for MD/RNs in Phase II was revised to increase their use of empathy. Preintervention/postintervention measurements for child include: time of hospice enrollment, pain, high-intensity medical interventions at EOL, and location of death; and for parent the following: uncertainty and hope.Results: Twenty-one parents of 18 children enrolled in the study, and 13 children were followed through EOL. At EOL, 11 (84.6%) died on home hospice or inpatient hospice, and only two (15%) received high-intensity medical interventions. Similar to published findings in the initial 13 parents enrolled in Phase I, parents in Phase II (n = 7) had improvement in hope and uncertainty, and child pain was decreased. Revised training resulted in significant improvement in MD/RN (N = 6) use of empathy (11% in Phase I vs. 100% in Phase II; P = 0.001).Conclusion: COMPLETE resulted in increased hospice enrollment in children with cancer at EOL compared with historical controls. In preanalysis/postanalysis, COMPLETE decreased child pain while supporting hope and reducing uncertainty in their parents. [ABSTRACT FROM AUTHOR]

Effective prognostication for a novel disease presents significant challenges, especially given the stress induced during a pandemic. We developed a point-of-care tool to summarize outcome data for critically ill patients with COVID-19 and help guide clinicians through a thoughtful prognostication process. Two authors reviewed studies of outcomes of patients with critical illness due to COVID-19 and created a visual infographic tool based on available data. Survival data were supplemented by descriptions of best- and worst-case clinical scenarios. The tool also included prompts for clinician reflection designed to enhance awareness of cognitive biases that may affect prognostic accuracy. This online, open-source COVID-19 Prognostication Tool has been made available to all clinicians at our institution and is updated weekly to reflect evolving data. Our COVID-19 Prognostication Tool may provide a useful approach to promoting consistent and high-quality prognostic communication across a health care system. [ABSTRACT FROM AUTHOR]

Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress, and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive, and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organizational and systemic approach which includes access to informal and professional support. [ABSTRACT FROM AUTHOR]

The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Furthermore, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency. [ABSTRACT FROM AUTHOR]

Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy. [ABSTRACT FROM AUTHOR]

Background: We designed group coaching calls to reinforce communication skill acquisition and Serious Illness Care Program uptake in adult primary care.Measures: Percentage of primary care physicians (PCPs) who have documented a serious illness conversation in the electronic health record (EHR) approximately three and six months after the coaching intervention. Participant feedback surveys to better understand provider attitudes toward the coaching intervention.Intervention: We offered 60-minute group coaching calls to internal medicine PCPs, previously trained in serious illness conversation skills, as part of an institutional quality incentive program. The calls addressed communication challenges common to serious illness care and instructed participants about how to document and bill for conversations.Outcomes: We completed 31 coaching calls during three months, in which 170 of 228 PCPs attended in groups of two to nine participants per call (74.6% penetration rate). The percentage of PCPs who documented at least one serious illness conversation in the EHR increased from 18.4% to 41.2% six months after the intervention. Primary care internal medicine physicians found the one-hour coaching calls to be highly valuable, with 86.9% of respondents attesting they would recommend the calls to their colleagues. Content analysis of participant feedback identified the most useful coaching content elements to be self-reflection around the impact of prior conversation skills training, instruction around using the EHR to find and document advance care planning discussions, the opportunity to share individual challenges and successes with peers, and feedback/advice from communication experts in palliative care.Conclusions/lessons Learned: Group coaching of PCPs resulted in more than a twofold increase in documented serious illness conversations. [ABSTRACT FROM AUTHOR]

Context: Responding to emotion cues is an essential skill for communicating with patients and families, but many health care trainees have difficulty applying this skill within the context of a complex conversation.Objectives: We created an original online module to facilitate deliberate practice of a three-skill framework for responding to emotion cues during complex or nonlinear serious illness conversations.Methods: Our original online module uses a gamebook format, which prompts trainees to engage in focused and repetitive practice of three well-defined skills for responding to emotion cues in a simulated family conference. We implemented the module as a part of a communication skills curriculum for interns rotating in the intensive care unit. After completing the module, all interns answered an open-ended survey question about their perceived skill acquisition. Results were analyzed by a qualitative method and coded into themes.Results: About 71% of interns (n = 65 of 92) completed the online module and open-ended survey question. About 89% of participants responded that they would use a naming, understanding, respecting, supporting, or exploring statement in response to an emotion cue. Nearly two-thirds of participants articulated their rationale for using naming, understanding, respecting, supporting, or exploring statements (e.g., preparing patients to process complex medical information, eliciting information about patient perspective.) CONCLUSION: Our online emotion cue module is a novel tool for deliberate practice of advanced skills for responding to emotion cues in serious illness conversations. In future studies, we will investigate whether our module's efficacy is enhanced by using it as a part of a flipped classroom curriculum with an in-person simulation session. [ABSTRACT FROM AUTHOR]

Context: Individuals with chronic obstructive pulmonary disease (COPD) typically experience a gradual worsening of the illness in the years before death. Owing to difficulties in predicting the disease trajectory or the timing of acute exacerbations, advance care planning (ACP) may be of particular importance for individuals with COPD.Objectives: The objective of this study was to review and summarize the available literature on current practices around ACP in COPD.Methods: A scoping review of the literature was conducted following the Arksey and O'Malley framework. Original research studies of any design were included.Results: Twenty-eight studies were included. Across studies, there was agreement that ACP should be incorporated into routine COPD management. There was evidence that this does not occur in everyday practice, with conversations tending to focus on day-to-day symptom management. Barriers included prognosis uncertainty, insufficient time and training, and a lack of protocols for who is responsible for initiating ACP. Facilitators included the use of transition points for identifying the appropriate time to initiate ACP, and an increased focus on ACP in professional education. The occurrence of repeated episodes of acute care was identified as a key transition point for identifying the palliative stage of COPD and an appropriate time to initiate ACP.Conclusion: The findings of this review confirm agreement among health care professionals and patients with COPD and their carers that ACP should be incorporated into routine COPD management. The use of transition points may help health care professionals overcome the barrier of prognosis uncertainty and identify patients who might benefit from ACP. [ABSTRACT FROM AUTHOR]

Context: Palliative care clinicians often have challenging conversations with patients or family caregivers who express ambivalence about goals or feel reluctant to discuss topics. Motivational Interviewing (MI) has tools to address ambivalence and reluctance.Objective: The aim of this pilot study was to test the feasibility, acceptability, and preliminary efficacy of an MI communication coaching intervention.Methods: We enrolled 22 palliative care clinicians and randomly assigned half to receive communication coaching versus wait-list control. The coaching entailed a lecture on MI, a 1:1 session to discuss applying MI, and audio recording and receiving feedback on four encounters (two separate times). Palliative care clinicians in the wait-list control arm audio-recorded four encounters. Coders blinded to study arm coded MI behaviors. We surveyed patients, caregivers, and clinicians after all audio-recorded encounters to assess perceptions of the encounter. The analyses were performed using a repeated-measures mixed model.Results: We found the intervention to be feasible and acceptable. Eighty-six percent of those enrolled completed all study activities including coaching sessions, audio-recording encounters, and completing surveys. Of those in the intervention arm, 88% rated the intervention as helpful and 100% would recommend it to a colleague. Compared to control clinicians, intervention clinicians had higher ratings of their MI skills after intervention, higher objectively rated communication skills, and slightly better burnout scores. We found no arm differences in patient, caregiver, or clinician ratings of satisfaction.Conclusion: This pilot study indicates that coaching palliative care clinicians is feasible and shows promise that coaching can improve palliative care clinician communication. [ABSTRACT FROM AUTHOR]

Context: Research has shown that using medical interpreters in language-discordant patient-provider encounters improves outcomes. There is limited research evaluating the views of medical interpreters on best interpreter practices when they are used to break bad news or participate in end-of-life (EOL) conversations.Objectives: To develop insights from medical interpreters about their role when interpreting discussions regarding EOL issues, identify practices interpreters perceive as helping to improve or hinder patient-provider communication, and obtain suggestions on how to improve communication during EOL conversations with Spanish-speaking and Chinese-speaking patients.Methods: Semistructured interviews were conducted with Spanish or Chinese medical interpreters. Participants were recruited until thematic saturation was reached. Twelve interviews were conducted, audiotape recorded, transcribed, and analyzed using standard qualitative methods.Results: Six major themes were identified: medical interpreters' perceived comfort level during EOL interpretation; perception of interpreter role; communication practices perceived as barriers to effective communication; communication practices felt to facilitate effective communication; concrete recommendations how to best use medical interpreters; and training received/perceived training needs.Conclusion: Medical interpreters provide literal interpretation of the spoken word. Because of cultural nuances in Chinese-speaking and Spanish-speaking patients/family members during EOL conversations, medical interpreters can translate the meaning of the message within a specific cultural context. Conducting premeetings and debriefings after the encounter are potentially important strategies to maximize communication during EOL conversations. [ABSTRACT FROM AUTHOR]

Context: A key challenge in nursing homes (NHs) is how to attain and clarify resident preferences for care and then communicate these preferences to family members and staff.Objectives: We evaluated the feasibility and acceptability of Me & My Wishes-person-centered videos of residents discussing their preferences for daily and end-of-life (EOL) care.Methods: For this descriptive study, Me & My Wishes videos were created with residents in three NHs in the Pacific Northwest. Feasibility was evaluated by tracking resident enrollment, completing and sharing their video, and conducting debriefing interviews to ascertain residents' impressions of the recording process and personalized conversation. After viewing the video, staff and family assessed communication quality via survey-the extent to which they perceived messages from the video (e.g., preferences for EOL) to be timely, accurate, adequate, complete, and credible and items on resident preferences for daily and EOL care.Results: Twenty of 33 residents approached created videos; 18 of these residents shared their videos with family or staff. Residents reported that they liked the opportunity to express their wishes. On a scale of 1-7 (lower is better), mean ratings were 2.0 (family) and 1.3 (staff) for communicating preferences for daily care; 1.9 (family) and 1.2 (staff) for communicating preferences for EOL. Both family and staff reported increased knowledge about resident preferences for daily and EOL care.Conclusion: This research supports the feasibility and acceptability of a videotaping approach (Me & My Wishes) for viewing, listening, and discussing residents' preferences for daily and EOL care. [ABSTRACT FROM AUTHOR]

Context: Older and seriously ill Australians are often admitted to hospital in the last year of their life. The extent to which these individuals have considered important aspects of end-of-life (EOL) care, including location in which care is provided, goals of care, and involvement of others in decision making, is unclear.Objectives: To determine, in a sample of older and seriously ill Australian inpatients, preferences regarding location in which they receive EOL care and reasons for their choice; who is involved in EOL decisions; disclosure of life expectancy; goals of care; and voluntary-assisted dying.Methods: Cross-sectional face-to-face survey interviews conducted with 186 (80% consent) inpatients in a tertiary referral center aged 80 years and older; or aged 55 years and older with progressive chronic disease(s); or with physician-estimated life expectancy of less than 12 months.Results: Home care was preferred (69%), given the perceived availability of family/friends, familiarity of environment, and likelihood of having wishes respected. If unable to make decisions themselves, inpatients wanted family to decide care alone (31%) or with a doctor (49%). Of those who had not discussed life expectancy, 23% wished to. Most (76%) preferred care that maintained quality of life and relieved symptoms. There was some agreement for being sedated at the EOL (63%) and able to access medication to end life (43%).Conclusion: Most inpatients would prefer EOL care that maintains quality and relieves suffering compared with life extension and to receive this care at home. Family involvement in resolution and documentation of EOL decisions should be prioritized. [ABSTRACT FROM AUTHOR]

Context: Many hospitalized patients receive care that is not concordant with their goals. Teaching communication skills that better align goals and treatment can improve the care that patients receive.Objective: To develop and test an innovative approach that encourages hospitalists to engage in goals of care (GOC) conversations with their patients.Methods: We recruited 14 hospitalists and randomized half to receive electronic health record alerts for patients who might benefit most from a goals-of-care conversation, as well as communication coaching. The coaching required an initial meeting, then audio recording of two GOC conversations and feedback from the coach. Outcomes were the presence of GOC conversations (primary), the quality of the GOC conversations, physician perceptions of the intervention, and hospital metrics (e.g., 30-day readmissions, referrals to palliative care).Results: We did not increase the frequency of GOC conversations but did improve the quality of the conversations. Patients of physicians who received the intervention had fewer 30-day readmission rates and were less likely to die 90 days after admission than patients of physicians in the control arm. Patients of intervention physicians also had fewer palliative care consults than patients of control physicians.Conclusions: Teaching hospitalists to have GOC conversations translated into better skills and outcomes for patients. This pilot study shows promise and should be tested in a larger trial. [ABSTRACT FROM AUTHOR]

Context: This scoping review maps the existing literature on narrative interventions within a palliative care and end-of-life context.Objectives: A scoping review was performed to address the following research question: What observational or randomized controlled trials have been performed to evaluate narrative interventions in the palliative care setting?Methods: A search across multiple electronic databases was performed. The search results were screened. Relevant articles were reviewed for the identification of common themes and challenges.Results: After reviewing 495 citations from electronic searches, and 44 articles from author archives or from manual review of article reference lists, we identified 34 articles for inclusion. Narrative interventions have focused on reflection or communication, and have been studied among providers, students, patients, and caregivers. Only patient/caregiver studies used randomized controlled design. Most studies were small and at the level of evaluating feasibility. Challenges include a high degree of heterogeneity among interventions and heterogeneity among parameters for evaluating those interventions.Conclusion: Narrative interventions are actively being evaluated with the intention of improving communication and well-being among all parties within the palliative care and end-of-life experience. The field would benefit from selecting a subset of outcomes that are comparable across studies, and a common framework for describing narrative interventions. Scant literature exists regarding narrative interventions to assist providers in communication. [ABSTRACT FROM AUTHOR]

Context: Hospitalized patients with advanced cancer often face complex, preference-sensitive decisions. How clinicians and patients engage in shared decision-making during goals-of-care discussions is not well understood.Objective: The objective of this study was to explore decision-making by patients and clinicians during inpatient goals-of-care discussions.Methods: This is a qualitative study of audio-recorded goals-of-care discussions between hospitalized patients with advanced cancer and their clinicians. Grounded theory was used to analyze transcripts.Results: Sixty-two patients participated in goals-of-care discussions with 51 unique clinicians. Nearly half of patients (n = 30) were female and their mean age was 60.1 years (SD = 12.7). A palliative care attending or fellow was present in 58 of the 62 discussions. Decisions centered on three topics: 1) disease-modifying treatments; 2) hospice; and 3) code status. Clinicians' approach to decision-making included the following stages: "information exchange," "deliberation," "making a patient-centered recommendation," and "wrap-up: decisional status." Successful completion of each stage varied by the type of decision. When discussing code status, clinicians missed opportunities to engage patients in information exchange and to wrap up decisional status. By contrast, clinicians discussing disease-modifying treatments and hospice failed to integrate patient preferences. Clinicians also missed opportunities to make patient-centered recommendations when discussing treatment decisions.Conclusion: Clinicians missed opportunities to facilitate shared decision-making regarding goals of care, and these missed opportunities differed by type of decision being discussed. Opportunities for clinician communication training include engagement in collaborative deliberation with patients and making patient-centered recommendations in situations of high medical uncertainty. [ABSTRACT FROM AUTHOR]

Context: Interprofessional teams often develop a care plan before engaging in a family meeting in the pediatric cardiac intensive care unit (CICU)-a process that can affect the course of the family meeting and alter team dynamics but that has not been studied.Objectives: To characterize the types of interactions that interprofessional team members have in pre-family meeting huddles in the pediatric CICU by 1) evaluating the amount of time each team member speaks; 2) assessing team communication and teamwork using standardized instruments; and 3) measuring team members' perceptions of collaboration and satisfaction with decision making.Methods: We conducted a prospective observational study in a pediatric CICU. Subjects were members of the interprofessional team attending preparation meetings before care meetings with families of patients admitted to the CICU for longer than two weeks. We quantitatively coded the amount each team member spoke. We assessed team performance of communication and teamwork using the PACT-Novice tool, and we measured perception of collaboration and satisfaction with decision making using the Collaboration and Satisfaction About Care Decisions questionnaire.Results: Physicians spoke for an average of 83.9% of each meeting's duration (SD 7.5%); nonphysicians averaged 9.9% (SD 5.2%). Teamwork behaviors were present and adequately performed as judged by trained observers. Significant differences in physician and nonphysician perceptions of collaboration were found in three of 10 observed meetings.Conclusion: Interprofessional team members' interactions in team meetings provide important information about team dynamics, revealing potential opportunities for improved collaboration and communication in team meetings and subsequent family meetings. [ABSTRACT FROM AUTHOR]

Context: Art and museum spaces offer a novel educational platform for exploring the subjective elements inherent to the understanding and treatment of pain. Physicians and museum educators collaborated on an educational model using art to explore the metacognitive dimensions of pain management.Objectives: Sessions used inquiry-based strategies to increase clinician awareness of implicit biases and build clinically applicable metacognitive skills that might influence how clinicians respond to patients in pain.Methods: Two sessions led by museum educators and physician facilitators were held at the Museum of Art, Rhode Island School of Design. Through exercises that used works of art as the basis for guided discussions rooted in constructivist learning theory, participants explored how personal experiences, communication, and tolerance for uncertainty shape their interpretations. These sessions created unique, nonjudgmental opportunities for clinicians to make connections between their experience and how they perceive, interpret, and respond to the subjective experiences of patients in pain. Optional surveys were distributed.Results: Participants at both sessions noted the event impacted how they think about making observations and communication-elements of practice inherent to pain management. The majority reported the experience could lead to a change in their practice. At the first session, 100% were interested in future sessions and 100% at the second would recommend it.Conclusions: Facilitated, reflective experiences with works of art have the capacity to challenge clinicians to become aware of their implicit biases, thought processes, and communication with potential importance for improving pain management and providing more compassionate care. [ABSTRACT FROM AUTHOR]

Context: Parents of children in the pediatric cardiac intensive care unit (CICU) report inadequate communication and a lack of empathy during conversations with their clinicians.Objective: To assess quantitatively and qualitatively the contributions made by team members of different professions in communicating with parents during family meetings.Methods: Prospective observational study. The study was conducted in the pediatric CICU at the Children's Hospital of Philadelphia. Subjects were members of the interprofessional team attending family meetings for patients admitted to the CICU longer than two weeks. We used quantitative conversation attribution and coding to compare durations of attendee contributions and contribution type by professional role. The SCOPE codebook and other quantitative codes drawn from best practices in family meetings were used to measure communication behaviors. A qualitative analysis of nurses' and social workers' contributions was used to identify themes not otherwise captured.Results: Across 10 meetings, physicians spoke for an average of 78.1% (SD 10.7%) of each meeting, nonphysicians 9.6% (SD 7.8%), and parents 17.4% (SD 12.2%). Parental understanding was assessed an average of 0.2 (SD 0.4) times per meeting. Parents expressed emotion an average of 4.2 times per meeting (SD 7.1), and the clinical team responded empathetically 2.2 times per meeting (SD 4.3). All clinician empathic responses were a minority of their overall contributions. Conversation was almost exclusively between physicians and families until physicians indicated other team members could contribute.Conclusions: Coordination of team members' roles in the meetings may improve parental engagement necessary for decision-making and empathic responses that are often missed. [ABSTRACT FROM AUTHOR]

Context: When discussing end-of-life issues with cancer patients, the addition of reassurance statements is considered helpful. However, patients' preferences for such statements have not been systematically demonstrated.Objectives: The objectives of this study were to clarify if phrases with additional reassurance statements would be more preferable to phrases without them and explore variables associated with patients' preferences.Methods: In a cross-sectional survey, 412 cancer patients assessed their own preferences for phrases with/without additional statements using a six-point scale (1 = not at all preferable; 6 = very preferable). These included the statements of "hope for the best and prepare for the worst" ("hope/prepare") when discussing prognosis; symptom palliation when discussing code status; and specific goals, continuity of care, and nonabandonment when discussing hospice referral. We evaluated demographic data and the coping style and conducted multivariate regression analysis.Results: Compared with the phrase of life expectancy (i.e., median + typical range) alone [mean (SD), 3.5 (1.2); 95% CI, 3.4-3.6], the phrase with the additional "hope/prepare" statement was more preferable [3.8 (1.4); 3.7-3.9]. Compared with the phrase of do-not-resuscitate alone (3.1(1.3); 3.0-3.3), the phrase with the additional statement of symptom palliation was more preferable [3.9 (1.3); 3.7-4.0]. Compared with the phrase of hospice referral alone [3.4 (1.2); 3.3-3.5], phrases with the addition of a specific goal [3.9 (1.0); 3.8-4.0], specific goal and continuity (4.4(1.0); 4.3-4.5), and specific goal, continuity, and nonabandonment [4.8 (1.2); 4.7-4.9] were more preferable. In multivariate analyses, task-oriented coping was significantly correlated with preferences for phrases including additional reassurance statements.Conclusion: Cancer patients systematically preferred reassurance statements. In end-of-life discussions, especially with patients with task-oriented coping, clinicians may provide additional reassurance statements. [ABSTRACT FROM AUTHOR]

Context: In the era of effective antiretroviral therapy, persons living with HIV/AIDS (PLWHA) are living longer, transforming HIV from a universally fatal disease to a serious chronic illness, warranting discussions between patients and their loved ones about advance care planning (ACP). Evidence is needed on factors associated with patients' likelihood to discuss ACP with loved ones.Objectives: To further characterize factors associated with successful ACP in PLWHAs with their loved ones, we examined associations between patients having ACP discussions with the need for assistance with personal care, chronic pain, life satisfaction, prior family disagreements over health care decisions, sex, age, and interference in daily routines due to memory problems.Methods: Data were from the Affirm Care study (N = 370), which examined social and environmental factors associated with health outcomes among PLWHAs and their informal caregivers.Results: Slightly more than half of respondents discussed ACP with loved ones (57%). In adjusted analysis, higher levels of chronic pain (odds ratio [OR] = 2.09, P = 0.045), needing assistance with personal care (OR = 1.63, P = 0.023), greater life satisfaction (OR = 1.02, P = 0.002), prior family arguments over health care decisions (OR = 2.80, P < 0.001), and female sex (OR = 2.22, P = 0.001) were associated with higher odds of discussing ACP with loved ones, whereas age, drug use, education level, depression, and memory problems were nonsignificant.Conclusion: These results suggest that interventions to increase ACP among PLWHAs and their loved ones should target males. The findings also suggest PLWHAs with chronic pain, the need for assistance with personal care, and those with a history of prior family arguments over health care decisions may be primed for ACP. [ABSTRACT FROM AUTHOR]

Context: Although studies show disparities in hospice care utilization, many questions remain regarding the causes of these disparities. Most studies focus on a single ethnic/racial group, and most use physician informants. None compare and contrast views of multiple stakeholders or use a systems approach within a single geographic region.Objectives: To gain an in-depth understanding of causes of hospice enrollment disparities in diverse patient populations within one state in the U.S.Methods: We conducted in-depth, individual interviews with multiple stakeholders in hospice care for diverse communities in Rhode Island. We identified participants through purposeful and snowball sampling strategies, aiming for a maximum variation sample. Interviews were audio-recorded, transcribed verbatim, and analyzed using a multistep grounded theory approach.Results: Participants, self-identifying from a wide variety of ethnic backgrounds, included physicians, nurses, social workers, chaplains, nursing assistants, administrators, and caregivers. Five themes emerged regarding patient- and provider-level barriers to hospice enrollment: 1) universal challenges of goals of care (GOC) conversations; 2) cultural norms and beliefs; 3) language barriers; 4) provider-specific challenges; and 5) trust. In minority populations, the central theme of GOC conversation challenges was intensified by the other four themes. Suggested solutions included 1) increased palliative care training; 2) "cultural interpreters" from local communities; 3) specially trained "GOC language interpreters"; 4) improved workforce diversity; and 5) community-level advocacy.Conclusion: The disparity in hospice enrollment among diverse patient populations is a complex and nuanced problem, involving numerous interrelated barriers. Addressing this disparity will require innovative solutions at multiple levels. [ABSTRACT FROM AUTHOR]

Context: Discussions regarding values and goals of care are central to providing quality palliative care. An inability to hear during these sensitive discussions may significantly impair the quality of care provided, yet hearing loss (HL) is not formally addressed in these settings or in programs designed to assist practitioners gain advanced communication skills.Objective: To gain an understanding of hospice and palliative care practitioners' experiences with HL and its impact on the care provided.Method: SurveyMonkey questionnaire eliciting whether and how HL impacted care provided with an open-ended question asking for descriptions of a situation where HL created a problem in communication with an older patient. Responses were analyzed using constant comparative techniques.Results: Of 510 respondents, 464 (91%) reported HL had some or great impact on the quality of care provided, 449 (88%) noted encountering a situation where HL impaired communication with an older adult, and 99 of these participants (22%) provided a specific example. The overarching theme was "Diagnostic and Treatment Uncertainty." Nonmutually exclusive categories underpinning this theme included the following: unable to get needed information, misinterpreting level of understanding, patient misunderstanding of instructions, and goals-of-care errors.Conclusion: HL impacts the quality of care provided to persons with serious illness by disrupting the identification, assessment, and treatment of the physical, psychosocial, and spiritual symptoms an individual is experiencing. HL should be formally addressed in programs designed to develop skills in conducting sensitive conversations. Practitioners should screen for HL, use practices that facilitate comprehension, and use assistive listening devices as needed. [ABSTRACT FROM AUTHOR]

Context: Women with metastatic breast cancer often receive many lines of palliative chemotherapy, which might be beneficial but also harmful. Still, little is known about the patients' perception of the patient-doctor communication regarding late lines of noncurative treatment.Objectives: Our aim was to explore breast cancer patients' preferences and perceptions of patient-doctor communication regarding continuous late lines of palliative chemotherapy.Patients and Methods: A qualitative study was conducted with semiguided face-to-face interviews with 20 women, 40-80 years old, on at least their second line of palliative chemotherapy (second to eighth line). We used a qualitative conventional content analysis.Results: All women knew they had incurable breast cancer but expressed hope for cure. Patients' definition of a good compassionate doctor was one who gives positive news and leaves room for hope. Ongoing chemotherapy, positive news from the doctors, and support from relatives encouraged hope. The women often expressed they accepted chemotherapy to please their doctor and relatives. The informants appreciated the doctor to be honest, but within positive limits. Over time, they stopped asking questions afraid of getting bad news, and left more and more treatment decisions to the doctor.Conclusions: The women's preferences for truth versus hope in patient-doctor communication changed over time, which increase the risk for continuous late lines of palliative chemotherapy by common collusion. Doctors need to individualize information, help patients make sense of their life, and allow hope to endure without further chemotherapy. [ABSTRACT FROM AUTHOR]

Introduction: Physician communication impacts patient outcomes. However, communication skills, especially around difficult conversations, remain suboptimal, and there is no clear way to determine the validity of entrustment decisions. The aims of this study were to 1) describe the development of a simulation-based mastery learning (SBML) curriculum for breaking bad news (BBN) conversation skills and 2) set a defensible minimum passing standard (MPS) to ensure uniform skill acquisition among learners.Innovation: An SBML BBN curriculum was developed for fourth-year medical students. An assessment tool was created to evaluate the acquisition of skills involved in a BBN conversation. Pilot testing was completed to confirm improvement in skill acquisition and set the MPS.Outcomes: A BBN assessment tool containing a 15-item checklist and six scaled items was developed. Students' checklist performance improved significantly at post-test compared to baseline (mean 65.33%, SD = 12.09% vs mean 88.67%, SD = 9.45%, P < 0.001). Students were also significantly more likely to have at least a score of 4 (on a five-point scale) for the six scaled questions at post-test. The MPS was set at 80%, requiring a score of 12 items on the checklist and at least 4 of 5 for each scaled item. Using the MPS, 30% of students would require additional training after post-testing.Comments: We developed a SBML curriculum with a comprehensive assessment of BBN skills and a defensible competency standard. Future efforts will expand the mastery model to larger cohorts and assess the impact of rigorous education on patient care outcomes. [ABSTRACT FROM AUTHOR]

Context: Persons with late-stage dementia have limited access to palliative care.Objective: The objective of this study was to test dementia-specific specialty palliative care triggered by hospitalization.Methods: This pilot randomized controlled trial enrolled 62 dyads of persons with late-stage dementia and family decision-makers on admission to hospital. Intervention dyads received dementia-specific specialty palliative care consultation plus postacute transitional care. Control dyads received usual care and educational information. The primary outcome was 60-day hospital or emergency department visits. Secondary patient- and family-centered outcomes were patient comfort, family distress, palliative care domains addressed in the treatment plan, and access to hospice or community-based palliative care. Secondary decision-making outcomes were discussion of prognosis, goals of care, completion of Medical Orders for Scope of Treatment (MOST), and treatment decisions.Results: Of 137 eligible dyads, 62 (45%) were enrolled. The intervention proved feasible, with protocol completion ranging from 77% (family two-week call) to 93% (initial consultation). Hospital and emergency department visits did not differ (intervention vs. control, 0.68 vs. 0.53 transfers per 60 days, P = 0.415). Intervention patients had more palliative care domains addressed and were more likely to receive hospice (25% vs. 3%, P < 0.019). Intervention families were more likely to discuss prognosis (90% vs. 3%, P < 0.001) and goals of care (90% vs. 25%, P < 0.001) and to have a MOST at 60-day follow-up (79% vs. 30%, P < 0.001). More intervention families made decisions to avoid rehospitalization (13% vs. 0%, P = 0.033).Conclusion: Specialty palliative care consultation for hospitalized patients with late-stage dementia is feasible and promising to improve decision-making and some treatment outcomes. [ABSTRACT FROM AUTHOR]

Context: Clinician failure to discuss goals of care (GOC) with seriously ill patients remains prevalent. Small-scale educational interventions have demonstrated improvement in physician communication skills, but it is unknown if these results translate into practice changes.Objectives: To implement a large-scale educational intervention that would facilitate increased GOC discussions in at-risk patients, increase clinician confidence in having GOC discussions, and prove to be sustainable.Methods: The Mapping the Future courses were four-to-eight-hour trainings, with brief lectures and demonstrations followed by practice with simulated patient cases. Participants completed precourse and postcourse surveys, including demographic information, self-confidence in a variety of communication tasks, willingness to initiate GOC discussions, barriers to GOC discussions, and self-perceived skill at having GOC conversations. We compared the rate of documentation of GOC discussions with at-risk inpatients in three hospitals for physicians who had taken the course and those who had not.Results: Over a two-year period, we trained 512 clinicians in 42 sessions. After the course, participants felt that they had improved in all the skills that we taught and agreed that they would be more likely to initiate GOC conversations. Trained physicians were more likely than their nontrained colleagues to document a GOC discussion with at-risk patients (30.8% vs. 27.2%; P = 0.0001).Conclusion: A large-scale educational intervention involving simulated patient cases increased GOC documentation across a health system. Other programs might consider collaboration with quality improvement specialists to measure the impact of education and situate it within other system changes to support increased GOC discussions. [ABSTRACT FROM AUTHOR]

Symptom management and skilled communication with patients and families are essential clinical services in the midst of the coronavirus disease 2019 pandemic. Although palliative care specialists have training in these skills, many frontline clinicians from other specialties do not. It is imperative that all clinicians responding to the coronavirus disease 2019 crisis have access to clinical tools to support symptom management and difficult patient and family communication. [ABSTRACT FROM AUTHOR]

Context: Clinicians often rely on documentation to relay information, and this remains the mainstay of interprofessional communication regarding patient care. However, there has been scant research focused on clinicians' documentation of dying in hospital and how this is communicated to other team members in patient charting.Objectives: To understand the language used to describe the deterioration and death of patients in an acute academic tertiary care center and to identify whether patient diagnoses or palliative care (PC) involvement was associated with clearer descriptions of this process.Methods: We conducted a retrospective chart review of the final admission of 150 patients who died on an inpatient internal medicine unit. Conventional and summative content analysis was performed of the language used to describe, either directly or indirectly, that the patient's death was imminent.Results: Of the 150 deaths, the median age was 79.5 (range 22-101), 58% were males, and 69% spoke English. A total of 45% of deaths were from cancer, and 66% occurred with prior PC team involvement. There was no documentation of the dying process in 18 (12%) charts. In the remainder, clinicians' documentation of imminent death fell into three categories: 1) identification of the current state using specific labels; for example, dying (24.7%) or end of life (15.3%), or less specific language, unwell or doing poorly (6.0%); 2) predicting the future state using specific or more vague predictions; for example, hours to days (7.3%) or poor or guarded prognosis (26.0%); and 3) using care provided to the patient to imply patient status; for example, PC (49.3%) or comfort care (28.7%). PC involvement, but not a malignant diagnosis, was associated with more frequent use of specific language to describe the current state (P = 0.004) or future state (P = 0.02).Conclusion: Death and dying in hospital is inadequately documented and often described using unclear and vague language. PC involvement is associated with clearer language to describe this process. [ABSTRACT FROM AUTHOR]

Context: Couple-based communication interventions have beneficial effects for patients with cancer and their partners. However, few studies have targeted patients with advanced stages of disease, and little is known about how best to assist couples in discussing issues related to life-limiting illness.Objectives: The purpose of the present study was to identify themes addressed by couples during a Couples Communication Skills Training intervention and the frequency with which they discussed issues related to end of life.Methods: Content analyses were conducted on recordings of 72 sessions from 12 couples facing advanced gastrointestinal cancer. Coding was based on six themes identified a priori from the framework for understanding what patients and family value at end of life. The percent of couples addressing each theme was calculated to gauge level of importance and acceptability of these topics.Results: The majority of couples addressed topics previously identified as salient at end of life, including clear decision making, affirmation of the whole person, pain and symptom management, contributing to others, and preparation for death. In addition, novel aspects to these themes emerged in the context of couples' conversations, illustrating the importance of the couple relationship in adjusting to life with a life-limiting illness and anticipating the transition to end of life.Conclusion: Findings suggest that couples likely would be receptive to an intervention that combines training in communication skills with guidance in focusing on issues related to life completion to assist with transitions at end of life. Such interventions might enhance both individuals' abilities to cope with illness-related symptoms and demands, enjoy the time they have together, and derive meaning from the experience. [ABSTRACT FROM AUTHOR]

Context: Maximizing value in palliative care requires continued development and standardization of communication quality indicators.Objectives: To describe the basic epidemiology of a newly adopted patient-centered communication quality indicator for hospitalized palliative care patients with advanced cancer.Methods: Cross-sectional analysis of 207 advanced cancer patients who received palliative care consultation at two medical centers in the U.S. Participants completed the Heard & Understood quality indicator immediately before and the day after the initial palliative care consultation: Over the past two days ["24 hours" for the post-consultation version], how much have you felt heard and understood by the doctors, nurses, and hospital staff?-completely/quite a bit/moderately/slightly/not at all. We categorized completely as indicating ideal quality.Results: Approximately one-third indicated ideal Heard & Understood quality before palliative care consultation. Age, financial security, emotional distress, preferences for comfort-longevity tradeoffs at the end of life, and prognosis expectations were associated with preconsultation quality. Among those with less-than-ideal quality at baseline, 56% rated feeling more Heard & Understood the day after palliative care consultation. The greatest prepost improvement was among people who had unformed end-of-life treatment preferences or who reported having no idea about their prognosis at baseline.Conclusion: Most patients felt incompletely heard and understood at the time of referral to palliative care consultation, and more than half of the patients improved after consultation. Feeling heard and understood is an important quality indicator sensitive to interventions to improve care and key variations in the patient experience. [ABSTRACT FROM AUTHOR]