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BACKGROUND:Although advance directives (AD) have been implemented for years in western countries, the concept of AD is not promoted extensively in eastern countries. In this study we evaluate a program to systematically conduct advance care planning (ACP) communication for hospitalized patients in Taiwan and identify the factors associated with AD completion. METHODS:In this retrospective evaluation of a clinical ACP program, we identified adult patients with chronic life-limiting illness admitted to Taipei City Hospital between April 2015 and January 2016. Trained healthcare providers held an ACP meeting to discuss patients' preference regarding end-of-life care and AD completion. A multiple logistic regression was performed to determine the factors associated with the AD completion. RESULTS:A total of 2878 patients were determined to be eligible for ACP during the study, among which 1798 (62.5%) completed ACP and data was available for 1411 patients (49.1%). Of the 1411 patients who received ACP communication with complete data, the rate of AD completion was 82.6%. The overall mean (SD) age was 78.2 (14.4) years. Adjusting for other variables, AD completion was associated with patients aged ≥ 85 years [adjusted odds ratio (AOR) = 1.80, 95% CI 1.21-2.67], critical illness (AOR = 1.17, 95% CI 1.06-1.30), and social workers participating in ACP meetings (AOR = 1.74, 95% CI 1.24-2.45). CONCLUSION:The majority of inpatients with chronic life-limiting illness had ACP communication as part of this ACP program and over 80% completed an AD. Our study demonstrates the feasibility of implementing ACP discussion in East Asia and suggests that social workers may be an important component of ACP communication with patients.

Introduction and Objectives: Interstitial lung diseases (ILDs) encompass a heterogeneous group of parenchymal lung disorders which have a significant burden on quality of life and exercise. The primary purpose of this randomised pilot trial performed in advanced ILD was to determine the feasibility and efficacy of a multidisciplinary palliative care approach (including physiotherapist, psychologist, pulmonologists, and palliative care doctors) to relieve patients’ symptoms of dyspnoea, depression measured with the Center for Epidemiological Studies-Depression (CES-D) scale and quality-of-life (QoL) at 6 and 12 months. Matherials and Methods: Fifty patients with confirmed interstitial lung disease at computed tomography (CT) scan and advanced disease were enrolled at our clinic. Patients were randomised to usual care group vs intervention group; in the intervention group, patients were scheduled to meet a physiotherapist, a psychologist, a palliative care doctor, and a pulmonologist specialized in ILD care. Data on dyspnoea, cough, quality of life and depression were recorded; patients in the intervention group were also tested to assess lower body flexibility and strength. Results: Both groups showed a worsening in dyspnoea during the time course of the trial, but the Borg scale was less in the intervention group at 6 and 12 months. A similar trend was observed also for the CES-D scale. No differences were observed for the other scales. Conclusions: A multi-disciplinary palliative care intervention in patients with advanced fibrosing interstitial lung disease is feasible and effective. Trial registration: NCT02929966 on ClinGovTrial.

Structured Abstract: Background: Adult congenital heart disease (ACHD) is a lifelong illness that presents ongoing challenges to quality of life. Fostering personal resilience resources to sustain well-being can enhance patients’ psychosocial health. Objective: We aimed to describe patients’ resilience experiences: how they understand, develop, and utilize resilience resources in managing ACHD. Methods: We conducted a qualitative study of patients with ACHD. Participants were recruited using maximum variation sampling. Individual, semi-structured interviews were conducted June 2020 to August 2021. We queried approaches to managing ACHD-related stress and experiences with resilience and analyzed responses with thematic analysis. Results: Participant (N = 25) median age was 32 years (range 22–44); 52% identified as female and 72% non-Hispanic white. Participants’ anatomic ACHD was moderate (56%) or complex (44%); physiologically, 76% were functional class C or D. Participants described various resilience resources, which map to an established resilience framework: 1) internal resources: maintaining positivity, self-directed activity, and setting goals; 2) external resources: social support; 3) existential resources: purpose, gratitude, and cultivating health. Even among participants who reported feeling unfamiliar (8/25) with the term “resilience,” all participants shared experiences reflecting resilience developed while living with ACHD. Conclusion: ACHD-relevant resilience resources may help patients and clinicians navigate ACHD-related stress and promote psychosocial well-being.

Background: Patients with severe acute brain injury (SABI) lack decision-making capacity, calling on families and clinicians to make goal-concordant decisions, aligning treatment with patient's presumed goals-of-care. Using the family perspective, this study aimed to (1) compare patient's goals-of-care with the care they were receiving in the acute setting, (2) identify patient and family characteristics associated with goal-concordant care, and (3) assess goals-of-care 6 months after SABI.Methods: Our cohort included patients with SABI in our Neuro-ICU and a Glasgow Coma Scale Score

STRUCTURED Abstract: Background: As clinical care and research in adult congenital heart disease (ACHD) increasingly include a focus on quality of life, hearing and reflecting on our patients’ experiences must be a priority. The objective of this study was to describe how living with this chronic illness has affected the adult lives of patients living with ACHD. Methods: We conducted a qualitative study of 25 participants in which we asked about the impact of ACHD on their quality of life. We used thematic analysis to analyze the interview data and identified themes reflecting patients’ reported experiences. Results: Study participants were a mean age of 38 years (range 21–63 years) and reported good functional status. ACHD was characterized as simple (24%), moderate (32%), or complex (44%). Three major themes arose: 1) impact of ACHD on identity, including perception of “normal,” self-esteem, and motivation; 2) sources of emotional distress; and 3) influence on adult decision-making, including careers and relationships. Conclusion: Living with ACHD impacts important aspects related to self-perceived quality of life. Addressing these concerns is important to providing comprehensive, patient-centered ACHD care.

Objectives:. Being a caregiver for a patient in the ICU can place emotional burden on families and engaging families in caregiving can reduce psychological distress. Our goal was to observe support methods used by families in the ICU and identify differences between race/ethnicity. Design:. A secondary analysis of a multicenter before-and-after clinical trial. Setting:. Three hospitals in Chicago, Providence, and Florence, Italy. Participants:. Family members of patients admitted to the ICU. Interventions:. In the primary study, an intervention was designed to engage families in seven domains that were based on the five physical senses (taste, touch, sight, smell, and sound), personal care, and spiritual care of the patient. During the control phase, nursing staff observed and recorded if they witnessed families participating in support methods unprompted. MEASUREMENTS AND MAIN RESULTS:. We compared the use of support methods among families from different races, categorized by race as either White, Black, or other using generalized estimating equation population-averaged logistic regression analysis. A total of 133 patients and 226 family members were enrolled in the control arm of the primary study, with patients being 71.2% White, 17% Black, and 11.8% other. Compared with Whites, families who identified their race Black or other may be more likely to participate in support methods that included personal care, touch, or spiritual care. Families who identified as Black may also be more likely to incorporate audio or sound. There were no differences in the categories of sight, smell, or taste. Conclusions:. Our study identifies racial differences in the use of bedside support methods in the ICU. Guiding families in a culturally congruent and open-minded manner may have the potential to decrease family distress and improve the experience for families in the ICU.

SUMMARY: OBJECTIVE The primary goal of this study was to address the documented deficiencies in end-of-life care (EOLC) in intensive care unit settings by identifying key EOLC domains and related quality indicators for use in the intensive care unit through a consensus process. A second goal was to propose specific clinician and organizational behaviors and interventions that might be used to improve these EOLC quality indicators.PARTICIPANTS Participants were the 36 members of the Robert Wood Johnson Foundation (RWJF) Critical Care End-of-Life Peer Workgroup and 15 nurse-physician teams from 15 intensive care units affiliated with the work group members. Fourteen adult medical, surgical, and mixed intensive care units from 13 states and the District of Columbia in the United States and one mixed intensive care unit in Canada were represented.METHODS An in-depth literature review was conducted to identify articles that assessed the domains of quality of EOLC in the intensive care unit and general health care. Consensus regarding the key EOLC domains in the intensive care unit and quality performance indicators within each domain was established based on the review of the literature and an iterative process involving the authors and members of the RWJF Critical Care End-of-Life Peer Workgroup. Specific clinician and organizational behaviors and interventions to address the proposed EOLC quality indicators within the domains were identified through a collaborative process with the nurse-physician teams in 15 intensive care units.MEASUREMENTS AND MAIN RESULTS Seven EOLC domains were identified for use in the intensive care unit: a) patient- and family-centered decision making; b) communication; c) continuity of care; d) emotional and practical support; e) symptom management and comfort care; f) spiritual support; and g) emotional and organizational support for intensive care unit clinicians. Fifty-three EOLC quality indicators within the seven domains were proposed. More than 100 examples of clinician and organizational behaviors and interventions that could address the EOLC quality indicators in the intensive care unit setting were identified.CONCLUSIONS These EOLC domains and the associated quality indicators, developed through a consensus process, provide clinicians and researchers with a framework for understanding quality of EOLC in the intensive care unit. Once validated, these indicators might be used to improve the quality of EOLC by serving as the components of an internal or external audit evaluating EOLC continuous quality improvement efforts in intensive care unit settings. [ABSTRACT FROM AUTHOR]

OBJECTIVES:. Frailty is often used in clinical decision-making for patients with coronavirus disease 2019, yet studies have found a variable influence of frailty on outcomes in those admitted to the ICU. In this individual patient data meta-analysis, we evaluated the characteristics and outcomes across the range of frailty in patients admitted to ICU with coronavirus disease 2019. DATA SOURCES:. We contacted the corresponding authors of 16 eligible studies published between December 1, 2019, and February 28, 2021, reporting on patients with confirmed coronavirus disease 2019 admitted to ICU with a documented Clinical Frailty Scale. STUDY SELECTION:. Individual patient data were obtained from seven studies with documented Clinical Frailty Scale were included. We classified patients as nonfrail (Clinical Frailty Scale = 1–4) or frail (Clinical Frailty Scale = 5–8). DATA EXTRACTION:. We collected patient demographics, Clinical Frailty Scale score, ICU organ supports, and clinically relevant outcomes (ICU and hospital mortality, ICU and hospital length of stays, and discharge destination). The primary outcome was hospital mortality. DATA SYNTHESIS:. Of the 2,001 patients admitted to ICU, 388 (19.4%) were frail. Increasing age and Sequential Organ Failure Assessment score, Clinical Frailty Scale score greater than or equal to 4, use of mechanical ventilation, vasopressors, renal replacement therapy, and hyperlactatemia were risk factors for death in a multivariable analysis. Hospital mortality was higher in patients with frailty (65.2% vs 41.8%; p < 0.001), with adjusted mortality increasing with a rising Clinical Frailty Scale score beyond 3. Younger and nonfrail patients were more likely to receive mechanical ventilation. Patients with frailty spent less time on mechanical ventilation (median days [interquartile range], 9 [5–16] vs 11 d [6–18 d]; p = 0.012) and accounted for only 12.3% of total ICU bed days. CONCLUSIONS:. Patients with frailty with coronavirus disease 2019 were commonly admitted to ICU and had greater hospital mortality but spent relatively fewer days in ICU when compared with nonfrail patients. Patients with frailty receiving mechanical ventilation were at greater risk of death than patients without frailty.

Abstract Background Families’ perspectives are of great importance in evaluating quality of care in the intensive care unit (ICU). This Danish-Dutch study tested a European adaptation of the “Family Satisfaction in the ICU” (euroFS-ICU). The aim of the study was to examine assessments of satisfaction with care in a large cohort of Danish and Dutch family members and to examine the measurement characteristics of the euroFS-ICU. Methods Data were from 11 Danish and 10 Dutch ICUs and included family members of patients admitted to the ICU for 48 hours or more. Surveys were mailed 3 weeks after patient discharge from the ICU. Selected patient characteristics were retrieved from hospital records. Results A total of 1077 family members of 920 ICU patients participated. The response rate among family members who were approached was 72%. “Excellent” or “Very good” ratings on all items ranged from 58% to 96%. Items with the highest ratings were concern toward patients, ICU atmosphere, opportunities to be present at the bedside, and ease of getting information. Items with room for improvement were management of patient agitation, emotional support of the family, consistency of information, and inclusion in and support during decision-making processes. Exploratory factor analysis suggested four underlying factors, but confirmatory factor analysis failed to yield a multi-factor model with between-country measurement invariance. A hypothesis that this failure was due to misspecification of causal indicators as reflective indicators was supported by analysis of a factor representing satisfaction with communication, measured with a combination of causal and reflective indicators. Conclusions Most family members were moderately or very satisfied with patient care, family care, information and decision-making, but areas with room for improvement were also identified. Psychometric assessments suggest that composite scores constructed from these items as representations of either overall satisfaction or satisfaction with specific sub-domains do not meet rigorous measurement standards. The euroFS-ICU and other similar instruments may benefit from adding reflective indicators.

Purpose: The purposes of the study were to provide richer context for families' quantitative assessments of the quality of ICU care, and to describe further quality areas of importance for family members., Materials and Methods: Free-text comments from 1077 family members of 920 patients focusing on family evaluation of ICU quality of care were analyzed using content analysis. Twenty-one Danish and Dutch ICUs participated from October 2014 to June 2015., Results: Four themes emerged as important to families: information, clinician skills, ICU environment, and discharge from the ICU. Families highlighted the importance of receiving information that was accessible, understandable and honest. They indicated that quality care was ensured by having clinicians who were both technically and interpersonally competent. The ICU environment and the circumstances of the transfer out of the ICU were described as contributing to quality of care. The comments identified room for improvement within all themes., Conclusions: The study highlights the importance of including both technical and emotional care for patients and families and the consequent need to focus on clinicians' mastery of interpersonal skills., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Objective: Overall health care resource utilization by adults with congenital heart disease has increased dramatically in the past two decades, yet little is known about utilization patterns at the end of life. The objective of this study is to better understand the patterns and influences on end-of-life care intensity for adults with congenital heart disease., Methods: We identified a sample of adults with congenital heart disease (n = 65), cancer (n = 10 784), or heart failure (n = 3809) who died between January 2010 and December 2015, cared for in one multi-hospital health care system. We used multivariate analysis to evaluate markers of resource utilization, location of death, and documentation of advance care planning among patients with congenital heart disease versus those with cancer and those with heart failure., Results: Approximately 40% of adults with congenital heart disease experienced inpatient and intensive care unit (ICU) hospitalizations in the last 30 days of life; 64% died in the hospital. Compared to patients with cancer, patients with adult congenital heart disease (ACHD) were more likely to have inpatient (adjusted risk ratio 1.57; 95% CI 1.12-2.18) and ICU admissions in the last 30 days of life (adjusted risk ratio 2.56; 95% CI 1.83-3.61), more likely to die in the hospital (adjusted risk ratio 1.75; 95% CI 1.43-2.13), and more likely to have documentation of advance care planning (adjusted risk ratio 1.46; 95% CI 1.09-1.96). Compared to patients with heart failure (HF), patients with ACHD were less likely to have an ICU admission in the last 30 days of life (adjusted risk ratio 0.73; 95% CI 0.54-0.99)., Conclusions: Adults with congenital heart disease have significant hospital resource utilization near the end of life compared to patients with cancer, notable for more hospitalizations and a higher likelihood of death in the hospital. This population represents an important opportunity for the application of palliative and supportive care., (© 2018 Wiley Periodicals, Inc.)

Introduction: There is relatively sparse literature on the use of administrative datasets for research in patients with adult congenital heart disease (ACHD). The goal of this analysis is to examine the accuracy of administrative data for identifying patients with ACHD who died., Methods: A list of the International Classification of Diseases codes representing ACHD of moderate- or great-complexity was created. A search for these codes in the electronic health record of adults who received care in 2010-2016 was performed, and used state death records to identify patients who died during this period. Manual record review was completed to evaluate performance of this search strategy. Identified patients were also compared with a list of patients with moderate- or great-complexity ACHD known to have died., Results: About 134 patients were identified, of which 72 had moderate- or great-complexity ACHD confirmed by manual review, yielding a positive predictive value of 0.54 (95% CI 0.45, 0.62). Twenty six patients had a mild ACHD diagnosis. Thirty six patients had no identified ACHD on record review. Misidentifications were attributed to coding error for 19 patients (53%), and to acquired ventricular septal defects for 11 patients (31%). Diagnostic codes incorrect more than 50% of the time were those for congenitally corrected transposition, endocardial cushion defect, and hypoplastic left heart syndrome. Only 1 of 21 patients known to have died was not identified by the search, yielding a sensitivity of 0.95 (0.76, 0.99)., Conclusion: Use of administrative data to identify patients with ACHD of moderate or great complexity who have died had good sensitivity but suboptimal positive predictive value. Strategies to improve accuracy are needed. Administrative data is not ideal for identification of patients in this group, and manual record review is necessary to confirm these diagnoses., (© 2017 Wiley Periodicals, Inc.)

Background: Family-centered care is a proposed way of supporting family involvement with a child's care and decreasing distress associated with a child's critical illness by improving communication, helping manage stress and coping, and decreasing conflicts. Nurses are critical to successful implementation of family-centered care., Objectives: To describe nurses' perceptions of the benefits and challenges of providing family-centered care in pediatric intensive care units., Methods: Semistructured interviews of 10 bedside and charge nurses in pediatric, cardiac, and neonatal intensive care units. Questions were related to 4 domains: the intensive care unit environment and its relationship to the structure and delivery of critical care, stressors for nurses and families, communication challenges and strategies, and involvement of families in care and decision-making., Results: The main thematic finding was the nurses' descriptions of a "balancing act" to provide quality family-centered care. The balancing act was characterized by the interaction between 2 types of changes: (1) intensive care unit policies related to visitation hours and family presence at the bedside and (2) physical transformations in the intensive care unit from shared open space to individual private rooms., Conclusions: All of the nurses viewed the transition to family-centered care as having benefits for families. They also described how changes had created new challenges for the delivery of nursing care in intensive care units, particularly regarding mentorship and the safety of patients and staff., (©2018 American Association of Critical-Care Nurses.)

Aim: The purpose of this paper is to describe the conceptual framework for a goals of care (GoC) intervention, elements, and findings of intervention feasibility, acceptability, and benefits from both patients with heart failure (HF) and their providers., Background: Receiving care at a mechanical circulatory support center for advanced HF offers new opportunities for treatment, making the implementation of a GoC intervention timely and crucial in helping patients determine next steps in HF treatment., Methods: The GoC intervention was designed using a self-management framework, incorporating the concepts of self-efficacy, patient activation, and patient motivation. At the conclusion of the study, open-ended exit interviews were conducted with patients and providers. Content analysis was used to derive the feasibility, acceptability, and benefits of the intervention., Results: Forty-one patients with HF, with average age 58.2±11.3years, LVEF=30.3±9.7%, and New York Heart Association Functional Class (NYHA FC)=2.4±0.8, and nine HF providers participated in the study. Patient benefits from the intervention included enhanced communication with their provider and family members, increased confidence to have a conversation with the provider, and refreshed HF knowledge. Provider benefits from the intervention were facilitating a conversation with the patient and learning new information about the patient's goals and values., Conclusion: The GoC intervention provides an avenue to align patient goals and values with treatment choices in the context of advanced heart failure, so that patient quality of life is enhanced and costs of care can be reduced., (Copyright © 2017 Elsevier Inc. All rights reserved.)

Background: Nurses and physicians often describe critical care that is not expected to provide meaningful benefit to a patient as futile, and providing treatments perceived as futile is associated with moral distress., Objective: To explore concordance of physicians' and nurses' assessments of futile critical care., Methods: A focus group of clinicians developed a consensus definition of "futile" critical care. Daily for 3 months, critical care physicians and nurses in a health care system identified patients perceived to be receiving futile treatment. Assessments and patients' survival were compared between nurses and physicians., Results: Nurses and physicians made 6254 shared assessments on 1086 patients. Nurses and physicians assessed approximately the same number of patients as receiving futile treatment (110 for nurses vs 113 for physicians, P = .82); however, concordance was low as to which patients were assessed as receiving futile treatment (κ = 0.46). The 110 patients categorized by nurses as receiving futile treatment had lower 6-month mortality than did the 113 patients so assessed by physicians (68% vs 85%, P = .005). Patients who were assessed as receiving futile treatment by both providers were more likely to die in the hospital than were patients assessed as receiving futile treatment by the nurse alone (76% vs 32%, P < .001) or by the physician alone (76% vs 57%, P = .04)., Conclusions: Interprofessional concordance on provision of critical care perceived to be futile is low; however, joint predictions between physicians and nurses were most predictive of patients' outcomes, suggesting value in collaborative decision making., (©2015 American Association of Critical-Care Nurses.)

Background: Despite its documented importance, communication between clinicians and patients' families in the intensive care unit often fails to meet families' needs, and interventions to improve communication are needed. Use of a communication facilitator-an additional staff member-to improve communication between clinicians and patients' families is the focus of an ongoing randomized trial. The clinical team's acceptance of the communication facilitator as an integral part of the team is important., Objectives: To explore clinicians' perceptions of the usefulness of a communication facilitator in the intensive care unit., Methods: Fourteen semistructured qualitative interviews to assess perspectives of physicians, nurses, and social workers who had experience with the communication facilitator intervention on the intervention and the role of the facilitator. Methods based on grounded theory were used to analyze the data., Results: Clinicians perceived facilitators as (1) facilitating communication between patients' families and clinicians, (2) providing practical and emotional support for patients' families, and (3) providing practical and emotional support for clinicians. Clinicians were enthusiastic about the communication facilitator but concerned about overlapping or conflicting roles., Conclusions: Clinicians in the intensive care unit saw the facilitator intervention as enhancing communication and supporting both patients' families and clinicians. They also identified the importance of the facilitator within the interdisciplinary team. Negative perceptions about the use of a facilitator should be addressed before the intervention is implemented, in order to ensure its effectiveness., (©2014 American Association of Critical-Care Nurses.)