Measures of Patient and Surrogate Preparedness for End-of-Life Decision-Making.

CONTEXT: Reliable and valid measures are critical in accurately assessing outcomes of advance care planning interventions (ACP) for end-of-life (EOL) decision-making. OBJECTIVES: To develop measures of preparedness for EOL decision-making for patients with end-stage renal disease and their surrogates (an exemplar population). METHODS: In this 3-phase study, Phases 1 and 2 included a cross-discipline concept analysis of the preparedness construct, item generation for patient and surrogate scales (82 items), evaluation of content validity and readability, cognitive interviewing, and item reduction. In phase 3, the retained 26 patient and 25 surrogate items were administered to 426 patients and 426 surrogates during a multisite trial of an ACP intervention versus care-as-usual and evaluated internal consistency, 2-week test-retest reliability, and construct validity. RESULTS: Scales were reduced to 20 patient and 19 surrogate items during phase 3. Cronbach's alphas were 0.86 (patient) and 0.90 (surrogate). There was a strong correlation between preparedness at baseline and two weeks for both scales (r = 0.66-0.69, P < 0.001). Confirmatory factor analysis and item-response analyses suggested unidimensionality. A significant correlation was shown between patient preparedness and patient decisional conflict (r = -0.53, P < 0.001), and surrogate preparedness and surrogate decision-making confidence (r = 0.44, P < 0.001). Among those who received the ACP intervention, the effect size of change was medium: Cohen's d = 0.54, P < 0.001 for patients and d = 0.57, P < 0.001 for surrogates. CONCLUSIONS: The preparedness scales demonstrated strong psychometric properties. Future studies should examine scale performance in other populations.

Development, feasibility testing, and preliminary evaluation of the Communication with an Artificial airway Tool (CAT): Results of the Crit-CAT pilot study.

BACKGROUND: A purpose-built outcome measure for assessing communication effectiveness in patients with an artificial airway is needed. OBJECTIVES: The objective of this study was to develop the Communication with an Artificial airway Tool (CAT) and to test the feasibility and to preliminary evaluate the clinical metrics of the tool. METHODS: Eligible patients with an artificial airway in the Intensive Care Unit were enrolled in the pilot study (Crit-CAT). The CAT was administered at least twice before and after the communication intervention. Item correlation analysis was performed. Participant and family member acceptability ratings and feedback were solicited. A qualitative thematic analysis was undertaken. RESULTS: Fifteen patients with a mean age of 53 years (standard deviation [SD]: 19.26) were included. The clinician-reported scale was administered on 50 attempts (100%) with a mean completion time of 4.5 (SD: 0.77) minutes. The patient-reported scale was administered on 46 out of 49 attempts (94%) and took a mean of 1.5 (SD: 0.39) minutes to complete. The CAT was feasible for use in the Intensive Care Unit, with patients with either an endotracheal or tracheostomy tube, whilst receiving invasive mechanical ventilation or not, and while using either verbal or nonverbal modes of communication. Preliminary establishment of responsiveness, validity, and reliability was made. The tool was acceptable to participants and their family members. CONCLUSION: The clinician-reported and patient-reported components of the study were feasible for use. The CAT has the potential to enable quantifiable comparison of communication interventions for patients with an artificial airway. Future research is required to determine external validity and reliability.

An observational pilot study of sleep disruption and delirium in critically ill children.

BACKGROUND: Sleep disruption is frequently observed in children with delirium in the pediatric intensive care unit (PICU). OBJECTIVES: This observational pilot study explores relationships among modifiable characteristics of the PICU environment (i.e., light, sound, clinician caregiving patterns), sleep disruption, and delirium. METHODS: Ten children, 1 to 4 years old, were recruited within 48 h of PICU admission and followed until discharge. A light meter, dosimeter, and video camera were placed at bedside to measure PICU environmental exposures. Sleep was measured via actigraphy. Twice daily delirium screening was conducted. Descriptive statistics were used to describe the PICU environment, sleep, and delirium experienced by children. Bivariate analyses were performed to determine relationships among variables. RESULTS: Average participant age was 21 (SD = 9.6) months. Eight (80%) were admitted for respiratory failure. Median PICU length of stay was 36.7 (IQR[29.6, 51.5]) hours, which limited data collection duration. Delirium prevalence was 60% (n = 6). Children experienced low daytime light levels (x¯ = 112.8 lux, SD = 145.5) and frequent peaks (x¯ = 1.9/hr, SD = 0.5) of excessive sound (i.e., ≥ 45 A-weighted decibels). Clinician caregiving episodes were frequent (x¯ = 4.5/hr, SD = 2.6). Children experienced 7.3 (SD = 2.1) awakenings per hour of sleep and a median sleep episode duration of 1.4 (IQR[0.6, 2.3]) hours. On average, children with delirium experienced 1.1 more awakenings per sleep hour and 42 fewer minutes of sleep per sleep episode during the night shift. Increased clinician care frequency and duration were associated with worse sleep quality and delirium. CONCLUSIONS: Study results will inform future, large-scale research and nurse-driven sleep promotion interventions.

Informal Caregiving Networks of Older Adults With Dementia Superimposed on Multimorbidity: A Social Network Analysis Study.

Background and Objectives: Caregiving is a social process and commonly involves more than a single caregiver, especially for older adults with multimorbidity, including dementia. This study was to characterize informal caregiving networks of older adults with dementia superimposed on multimorbidity (e.g., end-stage kidney disease) and to examine the relationships of network properties to outcomes of caregivers and older adults. Research Design and Methods: An egocentric social network survey was conducted. Up to 3 family caregivers of older adults on dialysis who had moderate-to-severe irreversible cognitive impairment with or without a documented diagnosis of dementia were recruited from 11 dialysis centers in 2 states. Caregivers completed a social network survey about individuals providing caregiving to the older adult and measures of caregiving burden and rewards, depression, and financial hardship. Older adults' emergency department visits and hospital admissions during the past 12 months were abstracted from the medical records. Results: A total of 76 caregiver informants of 46 older adults (78% Black) participated in the study. Of the 46 older adults, 65% had a multimember network (median size of 4). As the network density (the proportion of ties between members among all possible ties) increased, primary caregivers' financial hardship decreased whereas nonprimary caregivers' financial hardship increased. Further, for every 1-unit increase in mean degree (the average number of connections among members), there was a nearly fourfold increase in the odds of no hospital admission during the prior year for the older adult. Discussion and Implications: The network dynamics of informal caregiving networks may have an impact on the well-being of caregivers and older adults with dementia, but confirmatory longitudinal studies are needed.

Symptom Assessment for Mechanically Ventilated Patients: Principles and Priorities: An Official American Thoracic Society Workshop Report.

Mechanically ventilated patients experience many adverse symptoms, such as anxiety, thirst, and dyspnea. However, these common symptoms are not included in practice guideline recommendations for routine assessment of mechanically ventilated patients. An American Thoracic Society-sponsored workshop with researchers and clinicians with expertise in critical care and symptom management was convened for a discussion of symptom assessment in mechanically ventilated patients. Members included nurses, physicians, a respiratory therapist, a speech-language pathologist, a critical care pharmacist, and a former intensive care unit patient. This report summarizes existing evidence and consensus among workshop participants regarding 1) symptoms that should be considered for routine assessment of adult patients receiving mechanical ventilation; 2) key symptom assessment principles; 3) strategies that support symptom assessment in nonvocal patients; and 4) areas for future clinical practice development and research. Systematic patient-centered assessment of multiple symptoms has great potential to minimize patient distress and improve the patient experience. A culture shift is necessary to promote ongoing holistic symptom assessment with valid and reliable instruments. This report represents our workgroup consensus on symptom assessment for mechanically ventilated patients. Future work should address how holistic, patient-centered symptom assessment can be embedded into clinical practice.

Defining effective communication for critically ill patients with an artificial airway: An international multi-professional consensus.

OBJECTIVES: To define effective communication and identify its key elements specific to critically ill patients with an artificial airway. DESIGN: A modified Consensus Development Panel methodology. SETTING: International video-conferences. MAIN OUTCOME MEASURES: Definition of effective communication and it's key elements. RESULTS: Eight experts across four international regions and three professions agreed to form the Consensus Development Panel together with a Chair and one person with lived experience who reviewed the outputs prior to finalisation. "Communication for critically ill adult patients with an artificial airway (endotracheal or tracheostomy tube) is defined as the degree in which a patient can initiate, impart, receive, and understand information, and can range from an ineffective to effective exchange of basic to complex information between the patient and the communication partner(s). Effective communication encompasses seven key elements including: comprehension, quantity, rate, effort, duration, independence, and satisfaction. In critically ill adults, communication is impacted by factors including medical, physical and cognitive status, delirium, fatigue, emotional status, the communication partner and the nature of the ICU environment (e.g., staff wearing personal protective equipment, noisy equipment, bright lights)." The panel agreed that communication occurs on a continuum from ineffective to effective for basic and complex communication. CONCLUSION: We developed a definition and list of key elements which constitute effective communication for critically ill patients with an artificial airway. These can be used as the basis of standard terminology to support future research on the development of communication-related outcome measurement tools in this population. IMPLICATIONS FOR CLINICAL PRACTICE: This study provides international multi-professional consensus terminology and a definition of effective communication which can be used in clinical practice. This standard definition and key elements of effective communication can be included in our clinical impressions of patient communication, and be used in discussion with the patient themselves, their families and the multi-professional team, to guide care, goal development and intervention.

Communication with mechanically ventilated patients in intensive care units: A concept analysis.

AIMS: The aim of this study was to perform a concept analysis of communication with mechanically ventilated patients in intensive care units and present a preliminary model for communication practice with these patients. DESIGN: The Im & Meleis approach for concept analysis guided the study. SEARCH METHODS: A literature search was performed in January 2022 in MEDLINE, Embase, CINAHL, psycINFO and Scopus, limited to 1998-2022. The main medical subject headings search terms used were artificial respiration, communication and critical care. The search resulted in 10,698 unique references. REVIEW METHODS: After a blinded review by two authors, 108 references were included. Core concepts and terminology related to communication with mechanically ventilated patients were defined by content analytic methods. The concepts were then grouped into main categories after proposing relationships between them. As a final step, a preliminary model for communication with mechanically ventilated patients was developed. RESULTS: We identified 39 different phrases to describe the mechanically ventilated patient. A total of 60 relevant concepts describing the communication with mechanically ventilated patients in intensive care were identified. The concepts were categorized into five main categories in a conceptual map. The preliminary model encompasses the unique communication practice when interacting with mechanically ventilated patients in intensive care units. CONCLUSION: Highlighting different perspectives of the communication between mechanically ventilated patients and providers through concept analysis has contributed to a deeper understanding of the phenomena and the complexity of communication when the patients have limited possibilities to express themselves. IMPACT: A clear definition of concepts is needed in the further development of guidelines and recommendations for patient care in intensive care, as well as in future research. The preliminary model will be tested further. PATIENT OR PUBLIC CONTRIBUTION: No patient or public contribution, as this is a concept analysis of previous research.

Sleep disruption and delirium in critically ill children: Study protocol feasibility.

Delirium is a serious complication of pediatric critical illness. Sleep disruption is frequently observed in children with delirium, and circadian rhythm dysregulation is one proposed cause of delirium. Children admitted to the pediatric intensive care unit (PICU) experience multiple environmental exposures with the potential to disrupt sleep. Although researchers have measured PICU light and sound exposure, sleep, and delirium, these variables have not yet been fully explored in a single study. Furthermore, caregiving patterns have not often been included as a component of the PICU environment. Measuring the light and sound exposure, caregiving patterns, and sleep of critically ill children requires continuous PICU bedside data collection. This presents multiple methodological challenges. In this paper, we describe the protocol for an observational pilot study of the PICU environment, sleep, and delirium experienced by a sample of 10 critically ill children 1-4 years of age. We also evaluate and discuss the feasibility (i.e., acceptability, implementation, practicality) of the study protocol. Light and sound exposure were measured with bedside sensors. Caregiving was quantified through video recording. Sleep was measured via actigraphy and confirmed by video recording. Delirium screening with the Cornell Assessment of Pediatric Delirium was conducted twice daily, either in person or via video review. This study provides a refined measurement framework to inform future, large-scale studies and the development of nurse-driven sleep promotion interventions.

Impact of COVID-19 on Patient-Provider Communication in Critical Care: Case Reports.

INTRODUCTION: Communication impairment during mechanical ventilation and prolonged critical illness is extremely frustrating and frightening for patients and increases the risk for miscommunication, misinterpretation, and poor outcomes. The COVID-19 pandemic amplified patient communication impairment in intensive care units. This article presents 3 case examples from the experience of a team of hospital-based speech-language pathologists providing augmentative and alternative communication support resources and services to intensive care unit patients treated for COVID-19 during the first wave of the pandemic. Cases were selected to illustrate the protracted and complex in-hospital and rehabilitative recovery of critically ill patients with COVID-19, necessitating creative problem-solving and nursing collaborations with speech-language pathologists to support patient-provider communication. CLINICAL FINDINGS: The cases demonstrate (1) increased need for bilingual communication resources, (2) impaired cognitive and motor function associated with a variety of post-COVID-19 sequelae including severe critical illness myopathy, and (3) delayed transition to a speaking valve due to the secretion burden. DIAGNOSES: COVID-19 and acute respiratory distress syndrome (all), cerebral microhemorrhage, multi-system organ failure, hypoxic brain injury, altered mental status, seizure, stroke. INTERVENTIONS: Multimodal and progressive augmentative and alternative communication interventions included low-technology strategies and simple communication boards, video language interpretation, tracheostomy speaking strategies, and a video intercom system. OUTCOMES: All patients made progressive gains in communication ability. CONCLUSION: Evaluation by augmentative and alternative communication specialists and progressive intervention from speech-language pathologists in collaboration with intensive care unit nurses can greatly improve patient-provider communication during treatment for and recovery from COVID-19 and other prolonged critical illnesses.

Examining the Association of Billed Advance Care Planning With End-of-Life Hospital Admissions Among Advanced Cancer Patients in Hospice.

BACKGROUND: Advance care planning (ACP), or the consideration and communication of care preferences for the end-of-life (EOL), is a critical process for improving quality of care for patients with advanced cancer. The incorporation of billed service codes for ACP allows for new inquiries on the association between systematic ACP and improved EOL outcomes. OBJECTIVE: Using the IBM MarketScan® Database, we conducted a retrospective medical claims analysis for patients with an advanced cancer diagnosis and referral to hospice between January 2016 and December 2017. We evaluated the association between billed ACP services and EOL hospital admissions in the final 30 days of life. DESIGN: This is a cross-sectional retrospective cohort study. PARTICIPANTS: A total of 3,705 patients met the study criteria. MAIN MEASURES: ACP was measured via the presence of a billed ACP encounter (codes 99497 and 99498) prior to the last 30 days of life; hospital admissions included a dichotomous indicator for inpatient admission in the final 30 days of life. KEY RESULTS: Controlling for key covariates, patients who received billed ACP were less likely to experience inpatient hospital admissions in the final 30 days of life compared to those not receiving billed ACP (OR: 0.34; p < 0.001). CONCLUSION: The receipt of a billed ACP encounter is associated with reduced EOL hospital admissions in a population of patients with advanced cancer on hospice care. Strategies for consistent, anticipatory delivery of billable ACP services prior to hospice referral may prevent potentially undesired late-life hospital admissions.

Simulation Platform Development for Diabetes and Technology Self-Management.

BACKGROUND: Specialized education is critical for optimal insulin pump use but is not widely utilized or accessible. We aimed to (1) test the usability and acceptability of A1Control, a simulation platform supporting insulin pump education, and (2) determine predictors of performance. METHOD: Rural adult insulin pump users with type 1 diabetes (T1D) participated in a mixed methods usability study in 2 separate rounds. Participants navigated 3 simulations (ie, infusion site occlusion, hypoglycemia, exercise). Net Promoter Score (NPS) and Systems Usability Scale (SUS) were administered. Semi-structured interviews and direct observation were used to assess perceived usability, acceptability and performance. Synthetic Minority Oversampling Technique was used to fit predictive models for visualization of patterns leading to good or poor A1Control performance. RESULTS: Participants (N = 13) were 28-70 years old, 10 used automated insulin delivery and 12 used continuous glucose monitoring (CGM). Mean NPS was 9.5 (range 9-10) and positive sentiment during interviews indicated very high acceptability. SUS (mean 88.5, range 70-100) indicted a high perceived usability. CGM percent wear ≥ 94%, time spent in hypoglycemia ≤ 54 mg/dl of <0.01%, and <70 mg/dl of 0.5% predicted successful site-occlusion scenario performance with 100% accuracy. BOLUS score ≥ 2, TDD ≥ 34, and technology brand predicted exercise scenario success with 100% accuracy. There were an insufficient number of failed hypoglycemia scenarios to assess predictors. CONCLUSION: A1Control shows potential to increase access and frequency of self-management and technology education. Additional study is needed to determine sustained engagement and benefit.

Giving Voice: Nurse-Patient Communication in the Intensive Care Unit.

Communication is the essence of the nurse-patient relationship. The critical care nurse's role in facilitating patient communication and enabling communication between patients and their families has never been more important or poignant than during the COVID-19 pandemic. We have witnessed tremendous examples of resourceful, caring nurses serving as the primary communication partner and support for isolated seriously ill patients during this pandemic. However, evidence-based tools and techniques for assisting awake, communication-impaired, seriously ill patients to communicate are not yet systematically applied across all settings. Missed communication or misinterpretation of patients' messages induces panic and fear in patients receiving mechanical ventilation and can have serious deleterious consequences. This lecture presents a 23-year program of research in developing and testing combination interventions (eg, training, tailored assessment, and tools) for best practice in facilitating patient communication during critical illness. Evidence from related nursing and inter pro fessional research is also included. Guidance for unit-based assessment, tailoring, and implementation of evidence-based patient communication protocols also is provided.

Expect the unexpected: Adolescent and pre-teens' experience of diabetes technology self-management.

OBJECTIVE: Only 17% of adolescents with type 1 diabetes (T1D) are currently meeting their glycemic targets despite advances in diabetes technologies. Self-management behaviors and challenges specific to use of diabetes technologies are insufficiently studied in adolescents. We aimed to describe the experience of diabetes technology self-management, including facilitators and barriers, among preteens/adolescents with low and high A1C. RESEARCH DESIGN AND METHODS: Youth (10-18 years of age) with T1D who use insulin pump therapy were recruited from the larger quantitative cohort of a mixed methods study for participation in semi-structured qualitative interviews. Maximum variability sampling was used to recruit youth with A1C <7.5% (n = 5) and A1C >9% (n = 5). Participants' personal insulin pump and continuous glucose monitoring data were downloaded and served as a visual reference. Interviews were analyzed using a qualitative descriptive approach. RESULTS: Participants were 50% female with a median age of 14.9 years and 80% used CGM. The sample was predominantly white (90.0%). Analysis produced four major themes, Bad Day, Expect the Unexpected, Nighttime Dependence, and Unpredictability, It's Really a Team and interconnecting subthemes. Youth characterized ''Bad Days'' as those requiring increased diabetes focus and self-management effort. The unpredictability (''Expect the Unexpected'') of glucose outcomes despite attention to self-management behaviors was considerable frustration. CONCLUSIONS: Diabetes devices such as insulin pumps are complex machines that rely heavily on individual proficiency, surveillance, and self-management behaviors to achieve clinical benefit. Our findings highlight the dynamic nature of self-management and the multitude of factors that feed youths' self-management behaviors.

VidaTalk™ patient communication application "opened up" communication between nonvocal ICU patients and their family.

OBJECTIVES: To explore family members' perceptions of an electronic communication application, VidaTalk™, their communication experience, and emotional reactions to communication with mechanically ventilated patients in the intensive care units. RESEARCH METHODOLOGY/DESIGN: Qualitative phase of a mixed-methods study nested within a randomised controlled trial. Family members in the intervention group received the VidaTalk™ app as a communication aid during their intensive care stay. Seven family members participated in 18 semi-structured email interviews after discharge between May and December 2018. Interviews were analysed using qualitative content analysis. SETTING: Families were recruited in multiple intensive care units located in one university hospital. MAIN OUTCOME MEASURES: Communication experience with the VidaTalk™ and emotions while communicating with the patient. Basic qualitative description and constant comparative techniques were used to code and analyse the text using ATLAS_ti (Version 7.5.18). FINDINGS: The VidaTalk™ opened up family-patient communication by allowing clear communication and expanding communication content. Family members felt happy and thankful to communicate with the patient. They also expressed feelings of relief and less frustration and less stress while communicating with the patient.​ On the other hand, the patient's ability to express their worries or anxiety sometimes made families feel sad or distressed. CONCLUSION: The VidaTalk™ was helpful for family-patient communication. The VidaTalk™ may help families reduce psychological distress. However, ​expanded communication with critically ill patients may cause other negative feelings.

From Consultant to Co-investigator: One Diabetes Research Team's Journey of Patient Engagement.

Patients with diabetes are experts in the lived experience of self-management, making patient engagement beyond the role of research "subject" imperative for the creation of health care solutions that meaningfully address the problems they identify. We discuss our research team's relationship with our university's College Diabetes Network (CDN), an advocacy and support group for emerging adults with diabetes. Our collaborative research relationship has spanned three years, and multiple research studies with members serving as co-designers, consultants, and co-investigators. We discuss the CDN's role in two particular studies in which CDN members made substantive contributions to study design, instrument adaptation, and interpretation of findings. Key CDN members played a larger role in research activities and facilitated sustained engagement with the larger university CDN chapter. Barriers encountered included navigating research regulatory requirements while engaging CDN members in research and facilitating sustained engagement as CDN membership changes.

Training Chaplains to Provide Communication-Board-Guided Spiritual Care for Intensive Care Unit Patients.

Background: Chaplain-led communication-board-guided spiritual care may reduce anxiety and stress during an intensive care unit (ICU) admission for nonvocal mechanically ventilated patients, but clinical pastoral education does not teach the assistive communication skills needed to provide communication-board-guided spiritual care. Objective: To evaluate a four-hour chaplain-led seminar to educate chaplains about ICU patients' psychoemotional distress, and train them in assistive communication skills for providing chaplain-led communication-board-guided spiritual care. Design: A survey immediately before and after the seminar, and one-year follow-up about use of communication-board-guided spiritual care. Subjects/Setting: Sixty-two chaplains from four U.S. medical centers. Measurements: Multiple-choice and 10-point integer scale questions about ICU patients' mental health and communication-board-guided spiritual care best practices. Results: Chaplain awareness of ICU sedation practices, signs of delirium, and depression, anxiety, and post-traumatic stress disorder in ICU survivors increased significantly (all p < 0.001). Knowledge about using tagged yes/no questions to communicate with nonvocal patients increased from 38% to 87%, p < 0.001. Self-reported skill and comfort in providing communication-board-guided spiritual care increased from a median (interquartile range) score of 4 (2-6) to 7 (5-8) and 6 (4-8) to 8 (6-9), respectively (both p < 0.001). One year later, 31% of chaplains reported providing communication-board-guided spiritual care in the ICU. Conclusions: A single chaplain-led seminar taught chaplains about ICU patients' psychoemotional distress, trained chaplains in assistive communication skills with nonvocal patients, and led to the use of communication-board-guided spiritual care in the ICU for up to one year later.