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Background: This study sought to inductively derive core themes of religion and/or spirituality (R/S) active in patients' experiences of advanced cancer to inform the development of spiritual care interventions in the terminally ill cancer setting. Methods: This is a multisite, cross-sectional, mixed-methods study of randomly-selected patients with advanced cancer ( n = 68). Scripted interviews assessed the role of R/S and R/S concerns encountered in the advanced cancer experience. Qualitative and quantitative data were analyzed. Theme extraction was performed with interdisciplinary input (sociology of religion, medicine, theology), utilizing grounded theory. Spearman correlations determined the degree of association between R/S themes. Predictors of R/S concerns were assessed using linear regression and analysis of variance. Results: Most participants ( n = 53, 78%) stated that R/S had been important to the cancer experience. In descriptions of how R/S was related to the cancer experience, five primary R/S themes emerged: coping, practices, beliefs, transformation, and community. Most interviews (75%) contained two or more R/S themes, with 45% mentioning three or more R/S themes. Multiple significant subtheme interrelationships were noted between the primary R/S themes. Most participants (85%) identified 1 or more R/S concerns, with types of R/S concerns spanning the five R/S themes. Younger, more religious, and more spiritual patients identified R/S concerns more frequently ( [beta] = -0.11, p < 0.001; [beta] = 0.83, p = 0.03; and [beta] = 0.89, p = 0.04, respectively). Conclusions: R/S plays a variety of important and inter-related roles for most advanced cancer patients. Future research is needed to determine how spiritual care can incorporate these five themes and address R/S concerns. [ABSTRACT FROM AUTHOR]

Background: Being ;;fired'' by a patient is an uncomfortable, distressing, and awkward experience for most clinicians. Palliative care clinicians may be at increased risk of termination of the patient-physician relationship for a variety of reasons. Little has been written about the experience of patient-initiated termination of the patient-physician relationship, and to our knowledge, nothing has been written that is specific to palliative care. Objective: To discuss the experience of termination, offer a framework for learning from and coping with the experience, and make recommendations for how to meet patients' needs after the termination. Design: Case study and conceptual analysis of three cases from the experience of a palliative care fellow. Conclusions: The experience of patient-initiated termination of the patient-physician relationship can raise issues of rejection and self-doubt in the palliative care clinician, but can also provide important opportunities for growth, reflection, and learning. In some cases, re-connecting with the patients' families may be appropriate and beneficial for both the clinician and family. [ABSTRACT FROM AUTHOR]

Patients with life-threatening illnesses face great psychological challenges and frequently experience emotional distress. Yet, the end of life also offers opportunities for personal growth and the deepening of relationships. When physical symptoms and suffering are controlled, it is easier to address patients' central concerns-about their families, about their own psychological integrity, and about finding meaning in their lives. Optimal end-of-life care requires a willingness to engage with the patient and family in addressing these distinct domains. In addition to supporting growth of patients and their caregivers, physicians need to recognize the impact of psychiatric disorders such as depression, anxiety, and delirium at the end of life and develop skills in diagnosing and treating these syndromes. Comments of a patient with pancreatic cancer, his son, and his physician help illuminate the potential opportunities presented when coping with life-threatening illness. Enhanced understanding of the common psychological concerns of patients with serious illness can improve not only the clinical care of the patient, but also the physician's sense of satisfaction and meaning in caring for the dying. [ABSTRACT FROM AUTHOR]

Psychological distress often causes suffering in terminally ill patients and their families and poses challenges in diagnosis and treatment. Increased attention to diagnosis and treatment of depression can improve the coping mechanisms of patients and families. This paper reviews the clinical characteristics of normal grief and clinical depression and explains strategies for differential diagnosis. Although some literature discusses the psychological issues facing elderly patients and terminally ill patients with cancer, less is known about patients with end-stage pulmonary, cardiac, renal, and neurologic disease. Data on the effectiveness of interventions in terminally ill patients are lacking. Treatment recommendations in this paper represent extrapolations from existing literature and expert opinion. Diagnosing and treating depression in terminally ill patients involve unique challenges. Evidence of hopelessness, helplessness, worthlessness, guilt, and suicidal ideation are better indicators of depression in this context than neurovegetative symptoms. Although terminally ill patients often have suicidal thoughts, they are usually fleeting. Sustained suicidal ideation should prompt a comprehensive evaluation. Clinicians should have a low threshold for treating depression in terminally ill patients. Psychostimulants, because of their rapid onset of action, are useful agents and are generally well tolerated. Selective serotonin reuptake inhibitors and tricyclic antidepressants may also be used. Psychological interventions-including eliciting concerns and conveying the potential for connection, meaning, reconciliation, and closure in the dying process-can also facilitate coping. [ABSTRACT FROM AUTHOR]

Context: Although prayer potentially serves as an important practice in offering religious/spiritual support, its role in the clinical setting remains disputed. Few data exist to guide the role of patient-practitioner prayer in the setting of advanced illness.Objectives: To inform the role of prayer in the setting of life-threatening illness, this study used mixed quantitative-qualitative methods to describe the viewpoints expressed by patients with advanced cancer, oncology nurses, and oncology physicians concerning the appropriateness of clinician prayer.Methods: This is a cross-sectional, multisite, mixed-methods study of advanced cancer patients (n=70), oncology physicians (n=206), and oncology nurses (n=115). Semistructured interviews were used to assess respondents' attitudes toward the appropriate role of prayer in the context of advanced cancer. Theme extraction was performed based on interdisciplinary input using grounded theory.Results: Most advanced cancer patients (71%), nurses (83%), and physicians (65%) reported that patient-initiated patient-practitioner prayer was at least occasionally appropriate. Furthermore, clinician prayer was viewed as at least occasionally appropriate by the majority of patients (64%), nurses (76%), and physicians (59%). Of those patients who could envision themselves asking their physician or nurse for prayer (61%), 86% would find this form of prayer spiritually supportive. Most patients (80%) viewed practitioner-initiated prayer as spiritually supportive. Open-ended responses regarding the appropriateness of patient-practitioner prayer in the advanced cancer setting revealed six themes shaping respondents' viewpoints: necessary conditions for prayer, potential benefits of prayer, critical attitudes toward prayer, positive attitudes toward prayer, potential negative consequences of prayer, and prayer alternatives.Conclusion: Most patients and practitioners view patient-practitioner prayer as at least occasionally appropriate in the advanced cancer setting, and most patients view prayer as spiritually supportive. However, the appropriateness of patient-practitioner prayer is case specific, requiring consideration of multiple factors. [ABSTRACT FROM AUTHOR]

Context: Despite increased focus on improving palliative care in the emergency department (ED), there is little research on how to best address the specific needs of this patient population.Objectives: To better understand the experiences of acutely symptomatic patients seen in the ED.Methods: Using in-person semi-structured interviews, we explored the attitudes, experiences, and beliefs of 14 patients and seven family caregivers on the inpatient palliative care consult service, who had been admitted through the ED at two academic medical centers. We used a grounded theory approach to code responses. Transcripts were coded by a palliative medicine physician, an emergency medicine physician, and a general internist. Discrepancies were resolved by consensus. Coded sections were iteratively reviewed for interpretation, and concepts were collapsed into themes.Results: Five distinct themes emerged: 1) unprepared for managing symptoms at home; 2) uncertainty and anxiety; 3) communication is essential; 4) mixed experiences with symptom management; and 5) conflicting perspectives about the purpose of palliative care clinicians in the ED.Conclusion: Patients and caregivers identified systems, communication, and clinical issues in ED care that should be a focus for future research. [ABSTRACT FROM AUTHOR]

KCNB1 , on human chromosome 20q13.3, encodes the alpha subunit of the Kv2.1 voltage gated potassium channel. Kv2.1 is ubiquitously expressed throughout the brain and is critical in controlling neuronal excitability, including in the hippocampus and pyramidal neurons. Human KCNB1 mutations are known to cause global development delay or plateauing, epilepsy, and behavioral disorders. Here, we report a sibling pair with developmental delay, absence seizures, autism spectrum disorder, hypotonia, and dysmorphic features. Whole exome sequencing revealed a heterozygous variant of uncertain significance (c. 342 C>A), p. (S114R) in KCNB1 , encoding a serine to arginine substitution (S114R) in the N-terminal cytoplasmic region of Kv2.1. The siblings' father demonstrated autistic features and was determined to be an obligate KCNB1 c. 342 C>A carrier based on familial genetic testing results. Functional investigation of Kv2.1-S114R using cellular electrophysiology revealed slowing of channel activation, deactivation, and inactivation, resulting in increased net current after longer membrane depolarizations. To our knowledge, this is the first study of its kind that compares the presentation of siblings each with a KCNB1 disorder. Our study demonstrates that Kv2.1-S114R has profound cellular and phenotypic consequences. Understanding the mechanisms underlying KCNB1 -linked disorders aids clinicians in diagnosis and treatment and provides potential therapeutic avenues to pursue., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Manville, Block, Illeck, Kottmeier, Sidlow and Abbott.)

Adults' ability to accurately evaluate children's statements can have far-reaching consequences within the legal system. This study examined the evaluations of police officers ("experts") and laypersons ("nonexperts") when presented with videotaped interviews of children aged 3 and 5 years who provided either true or false reports or denials. Participants were drawn from several counties in the eastern United States. Children's interview statements fell within four statement types: accurate reports, false reports, accurate denials, and false denials. Both groups of participants displayed overbelief in false denials. Several control variables predicted accuracy, including children's age and children's race. A significant interaction emerged: Experts (vs. nonexperts) had greater odds of being accurate when judging false reports (vs. false denials). These findings highlight the challenges adults face when distinguishing between various types of children's statements. The results have important implications for legal contexts, emphasizing that fact finders need to be mindful of the risks associated with both overaccepting false denials and accepting false reports., Competing Interests: Declaration of Conflicting InterestsThe author(s) declared no potential conflicts of interests with respect to the authorship and/or publication of this article.

Background: In cases of child sexual abuse (CSA), a supportive non-offending caregiver (NOC) is important for the child's overall well-being and adjustment. NOC support is also predictive of CSA cases moving forward to prosecution. Limited research has studied CSA case factors in relation to NOC supportive behaviors across numerous support dimensions., Objective: We investigated what case details predicted four different dimensions of caregiver support., Participants and Settings: In this secondary analysis, a sample of 500 CSA cases from four prosecutors' offices in one New England state from 2009 to 2013 were randomly selected and reviewed., Method: This study used regression analysis to test 13 case characteristics (e.g., disclosure of abuse, NOC's relationship to perpetrator) as predictors of NOC support dimensions: belief of victim, support of prosecution, protection of victim, and whether a child protective services neglect report was filed against the caregiver., Results: When the perpetrator was their romantic partner, the NOC was less likely to protect and believe the child victim, yet more likely to support prosecution. NOCs were more likely to demonstrate belief when the child disclosed to them first., Conclusion: Our findings reveal the importance of the key case factors that are predictive of NOC support. This is the first study to examine these many case factors in relation to these four dimensions of support. Knowledge of these predictors can play an important role in better understanding the complexity of NOC support predictors and facilitating interventions designed to enhance such support., Competing Interests: Declaration of competing interest We have no known conflict of interest to disclose., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Background: During acute health deterioration, emergency medicine and palliative care clinicians routinely discuss code status (e.g., shared decision making about mechanical ventilation) with seriously ill patients. Little is known about their approaches. We sought to elucidate how code status conversations are conducted by emergency medicine and palliative care clinicians and why their approaches are different., Methods: We conducted a sequential-explanatory, mixed-method study in three large academic medical centers in the Northeastern United States. Attending physicians and advanced practice providers working in emergency medicine and palliative care were eligible. Among the survey respondents, we purposefully sampled the participants for follow-up interviews. We collected clinicians' self-reported approaches in code status conversations and their rationales. A survey with a 5-point Likert scale ("very unlikely" to "very likely") was used to assess the likelihood of asking about medical procedures (procedure based) and patients' values (value based) during code status conversations, followed by semistructured interviews., Results: Among 272 clinicians approached, 206 completed the survey (a 76% response rate). The reported approaches differed greatly (e.g., 91% of palliative care clinicians reported asking about a patient's acceptable quality of life compared to 59% of emergency medicine clinicians). Of the 206 respondents, 118 (57%) agreed to subsequent interviews; our final number of semistructured interviews included seven emergency medicine clinicians and nine palliative care clinicians. The palliative care clinicians stated that the value-based questions offer insight into patients' goals, which is necessary for formulating a recommendation. In contrast, emergency medicine clinicians stated that while value-based questions are useful, they are vague and necessitate extended discussions, which are inappropriate during emergencies., Conclusions: Emergency medicine and palliative care clinicians reported conducting code status conversations differently. The rationales may be shaped by their clinical practices and experiences., (© 2023 Society for Academic Emergency Medicine.)

Background and Objectives: Advance care planning (ACP) conversations are important to provide goal-concordant care (i.e., the care that matches the patient's previously stated goals) near end of life. While 31% of older adults presenting to the emergency department (ED) have dementia, only 39% have previously had ACP conversations. We refined and piloted an ED-based, motivational interview designed to stimulate ACP conversations (ED GOAL) for patients living with cognitive impairment and their caregivers., Research Design and Methods: We systematically refined ED GOAL and then conducted an acceptability study in an urban, academic medical center. We prospectively enrolled adults aged 50+ with cognitive impairment and their caregivers. Trained clinicians conducted the intervention. We measured acceptability after the intervention and participants' ACP engagement at baseline and 1-month follow-up., Results: Specific statements to address both the patient and caregiver were added to the ED GOAL script. Of 60 eligible patient/caregiver dyads approached, 26 participated, and 20 (77%) completed follow-up assessments. Patient mean age was 79 years (SD 8.5); 65% were female, 92.3% were White, 96.2% were non-Hispanic, and 69% had moderate dementia. Most patients/caregivers reported feeling completely heard and understood by the study clinician about their future medical care preferences (58%, 15/26). They also reported that the study clinician was very respectful (96%, 25/26) when eliciting those preferences., Discussion and Implications: Patients living with cognitive impairment and their caregivers found our refined ED GOAL acceptable and respectful. Future studies need to examine the effect of ED GOAL on ACP engagement among these dyads in the ED., (© The Author(s) 2023. Published by Oxford University Press on behalf of The Gerontological Society of America. All rights reserved. For permissions, please e-mail: journals.permissions@oup.com.)

Objectives: Serious illness conversations (SICs) can improve the experience and well-being of patients with advanced cancer. A structured Serious Illness Conversation Guide (SICG) has been shown to improve oncology patient outcomes but was developed and tested in a predominantly White population. To help address disparities in advanced cancer care, we aimed to assess the acceptability of the SICG among African Americans with advanced cancer and their clinicians., Methods: A two-phase study conducted in Charleston, SC, included focus groups to gather perspectives on the SICG in Black Americans and a single-arm pilot study of a revised SICG with surveys and qualitative exit interviews to evaluate patient and clinician perspectives. We used descriptive analysis of survey results and thematic analysis of qualitative data., Results: Community-based and patient focus group participants ( N = 20) reported that a simulated conversation using an adapted SICG built connection, promoted control, and fostered consideration of religious faith and family. Black patients with advanced cancer ( N = 23) reported that SICG-guided conversations were acceptable, helpful, and promoted conversations with loved ones. Oncologists found conversations feasible to implement and skill-building, and also identified opportunities for training and implementation that could support meeting the needs of their patients with low health literacy. An adapted SICG includes language to assess the strength and affirm the clinician-patient relationship., Significance of Results: An adapted structured communication tool to facilitate SIC, the SICG, appears acceptable to Black Americans with advanced cancer and seems feasible for use by oncology clinicians working with this population. Further testing in other marginalized populations may address disparities in advanced cancer care.

Clinician-led conversations about future care priorities occur infrequently with end-stage renal disease (ESRD) patients on dialysis. This was a pilot study of structured serious illness conversations using the Serious Illness Conversation Guide (SICG) in a single dialysis clinic to assess acceptability of the approach and explore conversation themes and potential outcomes among patients with ESRD. Twelve individuals with ESRD on dialysis from a single outpatient dialysis clinic participated in this study. Participants completed a baseline demographics survey, engaged in a clinician-led structured serious illness conversation, and completed an acceptability questionnaire. Conversations were recorded, transcribed and thematically analyzed. The average age of participants was 68.8 years. The conversations averaged 20:53 in length. Ten participants (83%) felt that the conversation was held at the right time in their clinical course and eleven participants (91%) felt that it was worthwhile. Most participants (73%) reported neutral feelings about clinician use of a printed guide. Eleven participants (91%) reported no change in anxiety about their illness following the conversation, and five participants (42%) reported that the conversation increased their hopefulness about future quality of life. Thematic analysis revealed common perspectives on dialysis including that participants view in-center hemodialysis as temporary, compartmentalize their kidney disease, perceive narrowed life experiences and opportunities, and believe dialysis is their only option. This pilot study suggests that clinician-led structured serious illness conversations may be acceptable to patients with ESRD on dialysis. The themes identified can inform future serious illness conversations with dialysis patients.

Legal actions are perhaps the most powerful responses to child maltreatment. Criminal and child protection investigation and forensic interviewing can provide the evidence needed to support a child victim's disclosure. Prosecution of child maltreatment can hold perpetrators accountable. Juvenile and family court actions can provide for children's safety and oversee their care in state custody and journey to a permanent home. This commentary introduces readers to a special issue of the journal  Child Maltreatment  that focuses on the legal system response to child abuse and neglect. We provide an overview of the issue's 11 research articles and additional commentary. These works provide crucial new knowledge on gaining information from child victims involved in the legal system, on the law enforcement and prosecution response to child maltreatment, and on the legal framework supporting child protection.

A retrospective examination of 500 child sexual abuse reports to prosecutor's offices analyzed case progress and predictors of attrition, including details about alleged perpetrator(s), victim(s), their families, and other case characteristics. Less than one in five cases proceeded to prosecution. For the full sample, we describe all outcomes and differentiate prosecutors' decisions to (a) intake/close, (b) investigate/close, or (c) prosecute; these stages comprise a 3-level dependent variable. Because it is important to understand which variables are associated with progress to each stage, we examined unique predictors of the decision to "investigate," and to "prosecute." Our multivariate analyses examine 325 cases with a perpetrator aged 16 and older. Caregiver support and perpetrator age were significant predictors across all outcome variables, while other factors were barriers to the "prosecute" decision only . Results highlight the complexities of case characteristics that are important at different stages of prosecutorial decision-making and inform future interventions.

Background: Serious illness conversations may lead to care consistent with patients' goals near the end of life. The emergency department could serve as an important time and location for these conversations., Aim: To determine the feasibility of an emergency department-based, brief motivational interview to stimulate serious illness conversations among seriously ill older adults by trained nurses., Design: A pre-/post-intervention study., Settings/participants: In an urban, tertiary care, academic medical center and a community hospital from January 2021 to January 2022, we prospectively enrolled adults ⩾50 years of age with serious illness and an expected prognosis <1 year. We measured feasibility outcomes using the standardized framework for feasibility studies. In addition, we also collected the validated 4-item Advance Care Planning Engagement Survey (a 5-point Likert scale) at baseline and 4-week follow-up and reviewing the electronic medical record for documentation related to newly completed serious illness conversations., Results: Among 116 eligible patients who were willing and able to participate, 76 enrolled (65% recruitment rate), and 68 completed the follow-up (91% retention rate). Mean patient age was 64.4 years (SD 8.4), 49% were female, and 58% had metastatic cancer. In all, 16 nurses conducted the intervention, and all participants completed the intervention with a median duration of 27 min. Self-reported Advance Care Planning Engagement increased from 2.78 pre to 3.31 post intervention (readiness to "talk to doctors about end-of-life wishes," p  < 0.008). Documentation of health care proxy forms increased (62-70%) as did Medical Order for Life Sustaining Treatment (1-11%) during the 6 months after the emergency department visit., Conclusion: A novel, emergency department-based, nurse-led brief motivational interview to stimulate serious illness conversations is feasible and may improve advance care planning engagement and documentation in seriously ill older adults.

Context: During acute health decompensations for seriously ill patients, emergency clinicians often determine the intensity end-of-life care. Little is known about how emergency clinicians conduct these conversations, especially among those who have received serious illness communication training., Objectives: To determine the self-reported practice patterns of code status conversations by emergency clinicians with and without serious illness communication training., Methods: A cross-sectional survey was conducted among emergency clinicians with and without a recent evidence-based, serious illness communication training tailored for emergency clinicians. Emergency clinicians were included from two academic medical centers. A five-point Likert scale ("very unlikely" to "very likely" to ask) was used to assess the self-reported likelihood of asking about patients' preferences for medical procedures and patients' values and goals., Results: Among 161 respondents (71% response rate), 77 (48%) received the training. A total of 70% of emergency clinicians reported asking about procedure-based questions, and only 38% reported asking about patient's values regarding end-of-life care. For value-based questions, statistically significant differences were observed between emergency clinicians who underwent the training and those who did not in four of the seven questions asked (e.g., the higher odds of exploring the patient's life priorities [adjusted OR = 4.34, 95% CI = 1.95-9.65, P-value < 0.001]). No difference was observed in the self-reported rates of all procedure-based questions between the two groups., Conclusion: Most emergency clinicians reported asking about procedure-based questions, and some asked about patient's value-based questions. Clinicians with recent serious illness communication training may ask more about some values and priorities., (Copyright © 2022 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: Visits to the emergency department (ED) are inflection points in patients' illness trajectories and are an underutilized setting to engage seriously ill patients in conversations about their goals of care. We developed an intervention (ED GOAL) that primes seriously ill patients to discuss their goals of care with their outpatient clinicians after leaving the ED. The aims of this study are (i) to test the impact of ED GOAL administered by trained nurses on self-reported, advance care planning (ACP) engagement after leaving the ED and (ii) to evaluate whether ED GOAL increases self-reported completion of serious illness conversation and other patient-centered outcomes., Methods: This is a two-armed, parallel-design, single-blinded, randomized controlled trial of 120 seriously ill older adults in two academic and one community EDs in Boston, MA. Participants are English-speaking adults 50 years and older with a serious life-limiting illness with a recent ED visit. Patients with a valid MOLST (medical order for life-sustaining treatment) form or other documented goals of care within the last 3 months are excluded. We enroll the caregivers of patients with cognitive impairment. Patients are assigned to the intervention or control group using block randomization. A blinded research team member will perform outcome assessments. We will assess (i) changes in ACP engagement within 6 months and (ii) qualitative assessments of the effect of ED GOAL., Discussion: In seriously ill older adults arriving in the ED, this randomized controlled trial will test the effects of ED GOAL on patients' self-reported ACP engagement, EMR documentation of new serious illness conversations, and improving patient-centered outcomes., Trial Registration: ClinicalTrials.gov identifier: NCT05209880., (© 2022. The Author(s).)

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

Background: Advance care planning (ACP) conversations are an important intervention to provide care consistent with patient goals near the end of life. The emergency department (ED) could serve as an important time and location for these conversations. Objectives: To determine the feasibility of an ED-based, brief negotiated interview (BNI) to stimulate ACP conversations among seriously ill older adults. Methods: We conducted a pre/postintervention study in the ED of an urban, tertiary care, academic medical center. From November 2017 to May 2019, we prospectively enrolled adults ≥65 years of age with serious illness. Trained clinicians conducted the intervention. We measured patients' ACP engagement at baseline and follow-up (3 ± 1 weeks) and reviewed electronic medical record documentation of ACP (e.g., medical order for life-sustaining treatment [MOLST]). Results: We enrolled 51 patients (mean age = 71; SD 12), 41% were female, and 51% of patients had metastatic cancer. Median duration of the intervention was 11.8 minutes; few (6%) of the interventions were interrupted. We completed follow-up for 61% of participants. Patients' self-reported ACP engagement increased from 3.0 to 3.7 out of 5 after the intervention ( p  < 0.01). Electronic documentation of health care proxy forms increased (75%-94%, n  = 48) as did MOLST (0%-19%, n  = 48) during the six months after the ED visit. Conclusion: A novel, ED-based, BNI intervention to stimulate ACP conversations for seriously ill older adults is feasible and may improve ACP engagement and documentation.

Background: Serious illness conversations are part of advance care planning (ACP) and focus on prognosis, values, and goals in patients who are seriously ill. To be maximally effective, such conversations must be documented accurately and be easily accessible. Objectives: The two coprimary objectives of the study were to assess concordance between written documentation and recorded audiotaped conversations, and to evaluate adherence to the Serious Illness Conversation Guide questions. Methods: Data were obtained as part of a trial in patients with advanced cancer. Clinicians were trained to use a guide to conduct and document serious illness conversations. Conversations were audiotaped. Two researchers independently compared audiorecordings with the corresponding documentation in an electronic health record (EHR) template and free-text progress notes, and rated the degree of concordance and adherence. Results: We reviewed a total of 25 audiorecordings. Clinicians addressed 87% of the conversation guide elements. Prognosis was discussed least frequently, only in 55% of the patients who wanted that information. Documentation was fully concordant with the conversation 43% of the time. Concordance was best when documenting family matters and goals, and least frequently concordant when documenting prognostic communication. Most conversations (64%) were documented in the template, a minority (28%) only in progress notes and two conversations (8%) were not documented. Concordance was better when the template was used (62% vs. 28%). Conclusion: Clinicians adhered well to the conversation guide. However, key information elicited was documented and fully concordant less than half the time. Greater concordance was observed when clinicians used a prespecified template. The combined use of a guide and EHR template holds promise for ACP conversations.

Justice can hinge on adults' abilities to distinguish accurate from inaccurate child testimony. Yet relatively little is known about factors that affect adults' abilities to determine the accuracy of children's eyewitness reports. In this study, adults ( N = 108) viewed videoclips of 3- and 5-year-olds answering open-ended and leading questions about positive and negative actually experienced ("true") events or never experienced ("false") events that the children either affirmed or denied. Analyses revealed that adults were more accurate at determining the veracity of negative compared with positive incidents, particularly when children said that they had experienced the event. Moreover, adults' accuracy was at chance for older children's false denials. Psycholegal implications are discussed.

Context: Many consider goal-concordant care (GCC) to be the most important of advance care planning and palliative care. Researchers face significant challenges in attempting to measure this outcome. We conducted a randomized controlled trial to assess the effects of a system-level intervention to improve serious illness communication on GCC and other outcomes., Objectives: To describe our measurement approach to GCC, present findings from a post-hoc analysis of trial data, and discuss lessons learned about measuring GCC., Methods: Using trial data collected to measure GCC, we analyzed ratings and rankings from a nonvalidated survey of patient priorities in the setting of advanced cancer, the Life Priorities Scale, and compared outcomes with correlative measures., Results: Participants commonly rated several predetermined and literature-derived priorities as important but did so in ways that were commonly incongruent with rankings. Ratings were frequently stable over time; rankings less so. Rankings are more likely to help assess the degree to which care is goal concordant but may be best augmented by corollary measures that signal achievement of a given priority., Conclusion: Measuring GCC remains a fundamental challenge to palliative care researchers. Ratings attest to the fact that many things matter to patients; however, rankings can better determine what matters most. Insights gained from our experience may guide future research aiming to use this outcome to assess the effect of intervention to improve serious illness care., (Copyright © 2020 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.)

Background: For adolescents and young adults (AYAs), the diagnosis of cancer can impede social development, especially with respect to education, employment, and financial independence. However, there are limited quantitative data on the extent and trajectory of life disruptions during cancer treatment for AYA patients., Methods: This was a longitudinal, prospective, questionnaire-based cohort study of 145 AYA patients with cancer aged 15 to 29 years who were treated at a large academic cancer center. Questionnaires were administered shortly after diagnosis and 4 and 12 months after diagnosis., Results: Although half of the participants lived with their parents 6 months before diagnosis, 61% lived with their parents after diagnosis (P = .0002 vs 6 months before diagnosis), with a similar proportion reported to be living with their parents 4 months after diagnosis (61%; P = .001) and 55% doing so 12 months after diagnosis (P = .07). Before diagnosis, 38% of the patients were not attending school. After diagnosis, that proportion rose to 61% (P < .0001), with a similar proportion 4 months after diagnosis (61%; P < .0001); 54% were not in school at 12 months (P = .001). Patients experienced similar decrements in employment (30% not working before diagnosis vs 49% not working after diagnosis; P < .0001) and financial independence (37% with complete financial independence before diagnosis vs 31% after diagnosis; P = .02). Overall, 65% of the patients (94 of 145) had not returned to their precancer baseline in at least 1 of these 4 social domains by 12 months after diagnosis., Conclusions: For many AYA patients, cancer leads to less engagement with school and work activities and decreased financial independence from parents. Clinicians should engage in early and ongoing discussions with patients about the potential impact of cancer on their lives., (© 2020 American Cancer Society.)

Adolescent and young adult (AYA) cancer patients enroll in therapeutic clinical trials at low rates. Prior study has focused on trial availability; this research attempts to elucidate the role of communication in individual decision-making. We surveyed 193 AYA patients and reviewed medical records of informed consent discussions. Twenty percent (38/193) of patients were offered trials, 58% (22/38) enrolled. Many were unable to correctly identify whether they were offered trials or enrolled, including 27% (6/22) of patients on clinical trials who believed that they were not. Efforts to improve communication have potential to enhance informed decision-making in this vulnerable population.

Background: Bereavement programs provide institutions with an avenue for obtaining feedback from family members about their experiences during a patient's illness and end-of-life (EOL) period that can be used to improve both patient care and the care of bereaved individuals. Objective: We examined family members' experiences about the clinical care their loved one received at EOL and the perceived effect this care had on their subsequent bereavement. Design: Survey. Setting/Subjects: One hundred forty bereaved family members from our cancer institute completed a bereavement survey. Of these family members, 67% were female, 66% were 60 years of age or older, and 81% were widowed. Measurement: We analyzed open-ended responses using NVivo 11 Plus© that asked bereaved family members about the ways the clinical (oncology) team was helpful or not in dealing with their loss. Results: The findings showed that compassionate care, competency, receiving honest facts, and outreach after the death favorably influenced the bereavement experience. Conversely, impersonal contact, lack of contact, including lack of caregiver support, and lack of information about EOL and death were identified as actions taken by the clinical team that were unhelpful in dealing with their loss. Conclusions: The feedback from bereaved family members highlights two areas that could benefit from quality improvement efforts: (1) communication skills that focus on enhancing compassionate connection, including conveying empathy, and providing reassurance and guidance to patients and their families and (2) communication skills that focus on delivering information about prognosis and the EOL period in an honest and direct way.

Background: Adolescent and young adult (AYA) cancer survivors have high risks of late effects. Little is known about the late-effect information needs of AYAs early in treatment or their role in treatment decision making. This study evaluated the importance, quality, and implications of information about late effects in AYAs recently diagnosed with cancer., Methods: This study surveyed 201 AYAs with cancer who were 15 to 29 years old and were treated at the Dana-Farber Cancer Institute (Boston, Massachusetts). Patients were approached within 6 weeks of their diagnosis and were asked about their late-effect and infertility information needs, treatment decision making, and communication outcomes., Results: Forty-five percent of the participants were female; 88% were white. Most AYAs (87% [173 of 200]) considered information about the risks of late effects to be extremely or very important; 80% (159 of 200) valued information about infertility. Many were distressed by information about late effects (53% [105 of 200]) and infertility (45% [89 of 200]); those who considered late-effect information distressing were more likely to value this information (P < .0001). Consideration of late effects (41% [82 of 201]) and infertility (36% [72 of 201]) greatly influenced many patients' treatment decision making. Although 92% of the patients (184 of 199) reported receiving high-quality information about the diagnosis, 57% (113 of 199; P < .0001) and 65% (130 of 199; P < .0001) felt that they had received high-quality information about late effects and infertility, respectively., Conclusions: Most AYAs with cancer value early information about the risks of late effects and infertility, yet many patients felt that they had not received high-quality information about these topics. The development of age-appropriate late-effect communication strategies that recognize high AYA distress may help to address the gap between desired information and perceived information quality., (© 2020 American Cancer Society.)

Global health care is experiencing an unprecedented surge in the number of critically ill patients who require mechanical ventilation due to the COVID-19 pandemic. The requirement for relatively long periods of ventilation in those who survive means that many are considered for tracheostomy to free patients from ventilatory support and maximise scarce resources. COVID-19 provides unique challenges for tracheostomy care: health-care workers need to safely undertake tracheostomy procedures and manage patients afterwards, minimising risks of nosocomial transmission and compromises in the quality of care. Conflicting recommendations exist about case selection, the timing and performance of tracheostomy, and the subsequent management of patients. In response, we convened an international working group of individuals with relevant expertise in tracheostomy. We did a literature and internet search for reports of research pertaining to tracheostomy during the COVID-19 pandemic, supplemented by sources comprising statements and guidance on tracheostomy care. By synthesising early experiences from countries that have managed a surge in patient numbers, emerging virological data, and international, multidisciplinary expert opinion, we aim to provide consensus guidelines and recommendations on the conduct and management of tracheostomy during the COVID-19 pandemic., (Copyright © 2020 Elsevier Ltd. All rights reserved.)

Objectives: Identifying family members at-risk of poor bereavement outcomes poses a challenge for clinicians, resulting in inconsistent bereavement follow-up. The current quality improvement study tests a method for identification of at-risk family members, and describes follow-up they received from the bereavement service at Dana-Farber Cancer Institute. Design: A standardized bereavement risk assessment, referral and follow-up process was piloted as part of a quality improvement project using a plan-do-study-act approach (PDSA). Methods: A convenience sample of eleven clinical social workers completed paper and pencil bereavement risk-screening assessments using the Bereavement Risk-Screening Tool (BRST) on a sample of bereaved family members known to them. The results of the BRST were passed onto the bereavement program for follow-up. Findings: Eleven out of a total of 17 social workers participated in the study. Social workers screened 100% (52/52) of identified bereaved family members, corresponding to 52 patient deaths. Approximately half (28/52) were identified as being 'at-risk' of a poor bereavement outcome based on the social worker's consideration of the presence of potential risk-factors and their response to a prediction-type question about the bereaved individual's future coping. 'Lack of preparation for the death', 'unexpected death within the context of an illness' and 'witnessing a difficult death' were the most commonly identified risk factors. Of those individuals who were identified to be 'at-risk', 89% received an outreach attempt by telephone from the director of bereavement services, surpassing our project target of 80%. Conclusions: The BRST has the potential to help clinicians in health care settings identify those family members who might be considered at heightened risk of a poor bereavement outcome, facilitating early outreach and recommendations for support. The tool was easy to complete and helped streamline the referral process to the bereavement program.

Background: At a population level, conversations between clinicians and seriously ill patients exploring patients' goals and values can drive high-value healthcare, improving patient outcomes and reducing spending., Methods: We examined the impact of a quality improvement intervention to drive better communication on total medical expenses in a high-risk care management program. We present our analysis of secondary expense outcomes from a prospective implementation trial of the Serious Illness Care Program, which includes clinician training, coaching, tools, and system interventions. We included patients who died between January 2014 and September 2016 who were selected for serious illness conversations, using the "Surprise Question," as part of implementation of the program in fourteen primary care clinics., Results: We evaluated 124 patients and observed no differences in total medical expenses between intervention and comparison clinic patients. When comparing patients in intervention clinics who did and did not have conversations, we observed lower average monthly expenses over the last 6 ($6297 vs. $8,876, p = 0.0363) and 3 months ($7263 vs. $11,406, p = 0.0237) of life for patients who had conversations., Conclusions: Possible savings observed in this study are similar in magnitude to previous studies in advance care planning and specialty palliative care but occur earlier in the disease course and in the context of documented conversations and a comprehensive, interprofessional case management program., Implications: Programs designed to drive more, earlier, and better serious illness communication hold the potential to reduce costs., Level of Evidence: Prospectively designed trial, non-randomized sample, analysis of secondary outcomes., Competing Interests: Declaration of competing interest Dr. Block works as the Editor for Palliative Care for UpToDate. Drs. Lakin, Paladino, and Bernacki are supported by Sojourns Leadership Awards from the Cambia Health Foundation. None of the other authors report any conflicts of interest., (Copyright © 2020 Elsevier Inc. All rights reserved.)

Objective: Adolescents and young adults (AYAs) with cancer have high rates of psychological distress and unmet support needs. Peace of mind is an important construct among older cancer patients and parents of children with cancer but has not been explored in AYAs. We sought to evaluate the extent to which AYAs with cancer experience peace of mind and to identify factors associated with greater peace of mind., Methods: We surveyed 193 AYAs with cancer aged 15 to 29 years within 12 weeks of diagnosis; 137 patients completed the same measures again 4 and 12 months after diagnosis. Patients were asked to report peace of mind, measured using items from the Functional Assessment of Chronic Illness, Spiritual Well-being scale (FACIT-Sp); anxiety and depression, using the Hospital Anxiety and Depression Scale (HADS); and experiences surrounding medical communication and decision making., Results: Mean scores for peace of mind were 3.59 at diagnosis (range 1-5, standard deviation 0.84), with similar scores at 4 (3.53, P = .34) and 12 (3.59, P = .94) months. In a multivariable model adjusted for age and gender, patients who reported receiving high-quality information about their cancer had greater peace of mind at diagnosis (β = .25, P = .03), whereas those who reported holding a passive role in treatment decision making (β = -.47, P < .0001) or who had anxiety (β = -.64, P = .0003) or depression (β = -.51, P = .04) had lower peace of mind., Conclusion: Peace of mind did not improve significantly over time for AYAs with cancer. While high-quality communication may be associated with heightened peace of mind, further study is needed to clarify relationships between peace of mind and other psychological variables., (© 2019 John Wiley & Sons, Ltd.)

Background: Although the majority of adolescent and young adult (AYA) patients with cancer desire prognostic information, to the authors' knowledge little is known regarding how preferences for prognostic communication change over time., Methods: The current study was a longitudinal, prospective, questionnaire-based cohort study of 136 AYA patients with cancer who were aged 15 to 29 years and who were treated at a large academic cancer center. Previously published scales were administered at the time of diagnosis and at 4 months and 12 months after diagnosis., Results: The majority of patients reported that prognostic information was very/extremely important at the time of diagnosis (85%), at 4 months (96%; P = .002 compared with baseline), and at 12 months (81%; P = .02 compared with baseline). Few patients reported that prognostic knowledge was very/extremely upsetting at baseline (7%), at 4 months (9%; P = .44 compared with baseline), or at 12 months (11%; P = .27 compared with baseline). The majority of patients were satisfied with the amount of prognostic information received throughout the year after diagnosis (81%, 86%, and 81%, respectively, at the time of diagnosis, at 4 months, and at 12 months). This percentage did not change between the time of diagnosis and 4 months (P = .16) or between diagnosis and 12 months (P = 1.00). In multivariable analysis, satisfaction with prognostic information received was associated with patient report of high-quality communication (odds ratio, 2.67; 95% CI, 1.38-5.17) and having a >75% chance of cure (odds ratio, 2.39; 95% CI, 1.24-4.61) after adjustment for patient age category, race/ethnicity, and time point of administration., Conclusions: The majority of AYA patients with cancer were satisfied with prognostic disclosure over time, but a sizeable minority wanted additional information. Desire for prognostic information increased over time. Clinicians should return to prognostic discussions over time to support AYA patients with cancer., (© 2019 American Cancer Society.)

Background : Communication between clinicians and patients fundamentally shapes the experience of serious illness. There is increasing recognition that health systems should routinely implement structures and processes to assure high-quality serious illness communication (SIC) and measure the effectiveness of their efforts on key outcomes. The absence, underdevelopment, or limited applicability of quality measures related specifically to SIC, and their limited application only to those seen by specialist palliative and hospice care teams, hinder efforts to improve care planning, service delivery, and health outcomes for all seriously ill patients. Objective : We convened an expert stakeholder symposium and subsequently surveyed participants to consider challenges, opportunities, priorities, and strategies to improve quality measurement specific to SIC. Results : We identified several barriers and opportunities to improving quality measurement of SIC. These include issues related to the definition of SIC, methodological challenges related to measuring SIC and related outcomes, underutilization of technologies that can facilitate measurement, and measurement development, and dissemination. Conclusions : Patients, clinicians, and health systems increasingly align around the importance of high-quality communication in serious illness. We offer recommendations for various stakeholder groups to advance SIC quality measurement. Enthusiasm and a sense of urgency among health systems to drive and measure communication improvements inform our proposal for a set of example measures for implementation now.