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BackgroundThe COVID-19 pandemic has shined a harsh light on a critical deficiency in our health care system: our inability to access important information about patients’ values, goals, and preferences in the electronic health record (EHR). At Memorial Sloan Kettering Cancer Center (MSK), we have integrated and systematized health-related values discussions led by oncology nurses for newly diagnosed cancer patients as part of routine comprehensive cancer care. Such conversations include not only the patient’s wishes for care at the end of life but also more holistic personal values, including sources of strength, concerns, hopes, and their definition of an acceptable quality of life. In addition, health care providers use a structured template to document their discussions of patient goals of care. ObjectiveTo provide ready access to key information about the patient as a person with individual values, goals, and preferences, we undertook the creation of the Patient Values Tab in our center’s EHR to display this information in a single, central location. Here, we describe the interprofessional, interdisciplinary, iterative process and user-centered design methodology that we applied to build this novel functionality as well as our initial implementation experience and plans for evaluation. MethodsWe first convened a working group of experts from multiple departments, including medical oncology, health informatics, information systems, nursing informatics, nursing education, and supportive care, and a user experience designer. We conducted in-depth, semistructured, audiorecorded interviews of over 100 key stakeholders. The working group sought consensus on the tab’s main content, homing in on high-priority areas identified by the stakeholders. The core content was mapped to various EHR data sources. We established a set of high-level design principles to guide our process. Our user experience designer then created wireframes of the tab design. The designer conducted usability testing with physicians, nurses, and other health professionals. Data validation testing was conducted. ResultsWe have already deployed the Patient Values Tab to a pilot sample of users in the MSK Gastrointestinal Medical Oncology Service, including physicians, advanced practice providers, nurses, and administrative staff. We have early evidence of the positive impact of this EHR innovation. Audit logs show increasing use. Many of the initial user comments have been enthusiastically positive, while others have provided constructive suggestions for additional tab refinements with respect to format and content. ConclusionsIt is our challenge and obligation to enrich the EHR with information about the patient as a person. Realization of this capability is a pressing public health need requiring the collaboration of technological experts with a broad range of clinical leaders, users, patients, and families to achieve solutions that are both principled and practical. Our new Patient Values Tab represents a step forward in this important direction.

In critical care, the specific, structured approach to patient care known as a time-limited trial has been promoted in the literature to help patients, surrogate decision makers, and clinicians navigate consequential decisions about life-sustaining therapy in the face of uncertainty. Despite promotion of the time-limited trial approach, a lack of consensus about its definition and essential elements prevents optimal clinical use and rigorous evaluation of its impact. The objectives of this American Thoracic Society Workshop Committee were to establish a consensus definition of a time-limited trial in critical care, identify the essential elements for conducting a time-limited trial, and prioritize directions for future work. We achieved these objectives through a structured search of the literature, a modified Delphi process with 100 interdisciplinary and interprofessional stakeholders, and iterative committee discussions. We conclude that a time-limited trial for patients with critical illness is a collaborative plan among clinicians and a patient and/or their surrogate decision makers to use life-sustaining therapy for a defined duration, after which the patients response to therapy informs the decision to continue care directed toward recovery, transition to care focused exclusively on comfort, or extend the trials duration. The plans 16 essential elements follow four sequential phases: consider, plan, support, and reassess. We acknowledge considerable gaps in evidence about the impact of time-limited trials and highlight a concern that if inadequately implemented, time-limited trials may perpetuate unintended harm. Future work is needed to better implement this defined, specific approach to care in practice through a person-centered equity lens and to evaluate its impact on patients, surrogates, and clinicians.

Modern, reliable, and valid outcome measures are essential to understanding the health needs of young children with burn injuries. Burn-specific and age-appropriate legacy assessment tools exist for this population but are hindered by the limitations of existing paper-based instruments. The purpose of this study was to develop item pools comprised of questions appropriate for children aged 1-5 with burn injuries. Item development was based on a framework provided by previous work to develop the Preschool Life Impact Burn Recovery Evaluation (LIBRE) Conceptual Model. The Preschool LIBRE Conceptual Model work established four sub-domains of functioning for children with burns aged 1-5. Item development involved a systematic literature review, a qualitative item review process with clinical experts, and parent cognitive interviews. Four item pools were established: (1) communication and language development; (2) physical functioning; (3) psychological functioning and (4) social functioning for preschool-aged children with burn injuries. We selected and refined candidate items, recall periods, survey instructions, and response option choices through clinical and parental feedback during the qualitative review and cognitive interview processes. Item pools are currently being field-tested as part of the process to calibrate and validate the Preschool1-5 LIBRE Computer Adaptive Test (CAT) Profile.

This study utilizes a correlation matrix to examine relationships between variables identified in literature (role ambiguity, role conflict, assignment of non-counseling duties, coworker and supervisor support, and level of control over time and task) as measured by the Demand Control Support Questionnaire (DCSQ), and elements of school counselor burnout (SCBO) as measured by the Counselor Burnout Inventory (CBI) subscales (Exhaustion, Incompetence, Negative Work Environment, Devaluing Clients, and Deterioration in Personal Life). Findings indicate experiencing high external demands, such as assignment of non-counseling duties; experiencing the school as a negative place to work; and experiencing low levels of support from colleagues and supervisors result in high levels of exhaustion and contribute to burnout. These variables need further exploration using a hierarchical multiple regression to analyze the amount of variance they contribute to SCBO. The article includes a discussion of ethical concerns, future research, and practice implications for school counselor educators, supervisors, educational administrators, and school counselors.

Due to the rapid developmental growth in preschool-aged children, more precise measurement of the effects of burns on child health outcomes is needed. Expanding upon the Shriners Hospitals for Children/American Burn Association Burn Outcome Questionnaire 0 to 5 (BOQ0-5), we developed a conceptual framework describing domains important in assessing recovery from burn injury among preschool-aged children (1-5 years). We developed a working conceptual framework based on the BOQ0-5, the National Research Council and Institute of Medicines Model of Child Health, and the World Health Organizations International Classification of Functioning, Disability, and Health for Children and Youth. We iteratively refined our framework based on a literature review, focus groups, interviews, and expert consensus meetings. Data were qualitatively analyzed using methods informed by grounded theory. We reviewed 95 pediatric assessments, conducted two clinician focus groups and six parent interviews, and consulted with 23 clinician experts. Three child health outcome domains emerged from our analysis: symptoms, functioning, and family. The symptoms domain describes parents perceptions of their childs pain, skin-related discomfort, and fatigue. The functioning domain describes childrens physical functioning (gross and fine motor function), psychological functioning (internalizing, externalizing, and dysregulation behavior; trauma; toileting; resilience), communication and language development (receiving and producing meaning), and social functioning (connecting with family/peers, friendships, and play). The family domain describes family psychological and routine functioning outcomes.

Due to the rapid developmental growth in preschool-aged children, more precise measurement of the effects of burns on child health outcomes is needed. Expanding upon the Shriners Hospitals for Children/American Burn Association Burn Outcome Questionnaire 0 to 5 (BOQ0-5), we developed a conceptual framework describing domains important in assessing recovery from burn injury among preschool-aged children (1-5 years). We developed a working conceptual framework based on the BOQ0-5, the National Research Council and Institute of Medicine's Model of Child Health, and the World Health Organization's International Classification of Functioning, Disability, and Health for Children and Youth. We iteratively refined our framework based on a literature review, focus groups, interviews, and expert consensus meetings. Data were qualitatively analyzed using methods informed by grounded theory. We reviewed 95 pediatric assessments, conducted two clinician focus groups and six parent interviews, and consulted with 23 clinician experts. Three child health outcome domains emerged from our analysis: symptoms, functioning, and family. The symptoms domain describes parents' perceptions of their child's pain, skin-related discomfort, and fatigue. The functioning domain describes children's physical functioning (gross and fine motor function), psychological functioning (internalizing, externalizing, and dysregulation behavior; trauma; toileting; resilience), communication and language development (receiving and producing meaning), and social functioning (connecting with family/peers, friendships, and play). The family domain describes family psychological and routine functioning outcomes.

Introduction: We conducted a cross-sectional study at the Icahn School of Medicine at Mount Sinai to elicit emergency physician (EP) perceptions regarding intensive care unit (ICU) triage decisions and ongoing management for boarding of ICU patients in the emergency department (ED). We assessed factors influencing the disposition decision for critically ill patients in the ED to characterize EPs’ perceptions about ongoing critical care delivery in the ED while awaiting ICU admission.Methods: Through content expert review and pilot testing, we iteratively developed a 25-item written survey targeted to EPs, eliciting current ICU triage structure, opinions on factors influencing ICU admission decisions, and views on caring for critically ill patients “boarding” in the ED for >4-6 hours.Results: We approached 732 EPs at a large, national emergency medicine conference, achieving 93.6% response and completion rate, with 54% academic and 46% community participants. One-fifth reported having formal ICU admission criteria, although only 36.6% reported adherence. Common factors influencing EPs’ ICU triage decisions were illness severity (91.1%), ICU interventions needed (87.6%), and diagnosis (68.2%), while ICU bed availability (13.5%) and presence of other critically ill patients in ED (10.2%) were less or not important. While 72.1% reported frequently caring for ICU boarders, respondents identified high patient volume (61.3%) and inadequate support staffing (48.6%) as the most common challenges in caring for boarding ICU patients.Conclusion: Patient factors (eg, diagnosis, illness severity) were seen as more important than system factors (eg, bed availability) in triaging ED patients to the ICU. Boarding ICU patients is a common challenge for more than two-thirds of EPs, exacerbated by ED volume and staffing constraints.

In this review, we seek to highlight how critical illness and critical care affect longer-term outcomes, to underline the contribution of ICU delirium to cognitive dysfunction several months after ICU discharge, to give new insights into ICU acquired weakness, to emphasize the importance of value-based healthcare, and to delineate the elements of family-centered care. This consensus of 29 also provides a perspective and a research agenda about post-ICU recovery.

ObjectivesTo describe unique features of neurocritical illness that are relevant to provision of high-quality palliative care; to discuss key prognostic aids and their limitations for neurocritical illnesses; to review challenges and strategies for establishing realistic goals of care for patients in the neuro-ICU; and to describe elements of best practice concerning symptom management, limitation of life support, and organ donation for the neurocritically ill.Data sourcesA search of PubMed and MEDLINE was conducted from inception through January 2015 for all English-language articles using the term "palliative care," "supportive care," "end-of-life care," "withdrawal of life-sustaining therapy," "limitation of life support," "prognosis," or "goals of care" together with "neurocritical care," "neurointensive care," "neurological," "stroke," "subarachnoid hemorrhage," "intracerebral hemorrhage," or "brain injury."Data extraction and synthesisWe reviewed the existing literature on delivery of palliative care in the neurointensive care unit setting, focusing on challenges and strategies for establishing realistic and appropriate goals of care, symptom management, organ donation, and other considerations related to use and limitation of life-sustaining therapies for neurocritically ill patients. Based on review of these articles and the experiences of our interdisciplinary/interprofessional expert advisory board, this report was prepared to guide critical care staff, palliative care specialists, and others who practice in this setting.ConclusionsMost neurocritically ill patients and their families face the sudden onset of devastating cognitive and functional changes that challenge clinicians to provide patient-centered palliative care within a complex and often uncertain prognostic environment. Application of palliative care principles concerning symptom relief, goal setting, and family emotional support will provide clinicians a framework to address decision making at a time of crisis that enhances patient/family autonomy and clinician professionalism.

ContextThirst is a pervasive, intense, and distressing symptom in intensive care unit (ICU) patients. Although thirst may be avoided and/or treated, scant data are available to help providers identify patients most in need.ObjectivesThis study was designed to identify predictors of the presence, intensity, and distress of thirst in ICU patients.MethodsThis descriptive cross-sectional study enrolled 353 patients from three ICUs (medical-surgical, cardiac, and neurological). To measure outcomes, patients were asked to report the presence of thirst (yes/no) and, if present, to rate its intensity and distress on zero to 10 numeric rating scales (10=worst). Predictor variables were demographic (e.g., age), treatment-related (e.g., opioids), and biological (e.g., total body water). Data were analyzed with logistic regression and truncated regression with alpha preset at 0.05.ResultsThirst presence was predicted by high opioid doses (≥ 50 mg), high furosemide doses (>60 mg), selective serotonin reuptake inhibitors, and low ionized calcium. Thirst intensity was predicted by patients not receiving oral fluid and having a gastrointestinal (GI) diagnosis. Thirst distress was predicted by mechanical ventilation, negative fluid balance, antihypertensive medications, and a GI or "other" diagnosis.ConclusionThirst presence was predicted by selected medications (e.g., opioids). Thirst intensity and/or thirst distress were predicted by other treatments (e.g., mechanical ventilation) and medical diagnoses (e.g., GI). This is one of the first studies describing predictors of the multidimensional characteristics of thirst. Clinicians can use these data to target ICU patients whose thirst might warrant treatment.

Rapid response teams (RRTs) can effectively foster discussions about appropriate goals of care and address other emergent palliative care needs of patients and families facing life-threatening illness on hospital wards. In this article, The Improving Palliative Care in the ICU (IPAL-ICU) Project brings together interdisciplinary expertise and existing data to address the following: special challenges for providing palliative care in the rapid response setting, knowledge and skills needed by RRTs for delivery of high-quality palliative care, and strategies for improving the integration of palliative care with rapid response critical care. We discuss key components of communication with patients, families, and primary clinicians to develop a goal-directed treatment approach during a rapid response event. We also highlight the need for RRT expertise to initiate symptom relief. Strategies including specific clinician training and system initiatives are then recommended for RRT care improvement. We conclude by suggesting that as evaluation of their impact on other outcomes continues, performance by RRTs in meeting palliative care needs of patients and families should also be measured and improved.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians—often engaging patients, families, and communities in times of serious illness and end of life—wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness. [ABSTRACT FROM AUTHOR]

Globally, public schools enroll culturally and linguistically diverse student populations and teacher preparation programs must assess the cultural competence of preservice teachers. Yet, few adequately tested measures of teacher cultural competence are available. In this research study, a sample of 396 preservice teachers were surveyed to evaluate psychometric properties of one cultural competence measure designed by Liang and Zhang (2009) and to determine how well the instrument's factors reflected the construct of cultural competence. Data were collected over a 2-year period from preservice teachers enrolled in their last semester of student teaching in public school settings. Exploratory and confirmatory factor analyses were conducted along with a Schmid-Leiman solution due to strong interfactor correlations. Results revealed residualized first-order factors accounting for 47% of the variance and a second-order factor, Cultural Competence, which accounted for 53% of the variance explained. Implications for assessing preservice teachers' cultural competence and future research are discussed.

This collective case study investigated the experiences of bilingual counselors-in-training who assessed school-wide cultural competence in public schools. Analysis and interpretation of data resulted in the identification of 5 themes: eye-opening experiences, recognition of strengths, the role of school leaders, road maps for change, and empowering marginalized groups. Implications and recommendations are discussed.

This article is the result of an interview with Judith Nelson conducted by Madeline Cantor. Madeline is the Associate Director of the Dance Program at Bryn Mawr College and a colleague and friend of Judith Nelson. In this article, Judith offers her perspective as a dance educator who teaches students with disabilities, and as a parent of a child with a disability. This dual role provides readers with a view on how each role influences the other.

Author(s): Kusum S. Mathews [sup.1], Judith E. Nelson [sup.2] [sup.3] Author Affiliations: (1) 0000 0001 0670 2351, grid.59734.3c, Division of Pulmonary, Critical Care, and Sleep Medicine, Department of Medicine, Department [...]