Association Between Self-reported Importance of Religious or Spiritual Beliefs and End-of-Life Care Preferences Among People Receiving Dialysis.

Importance: Although people receiving maintenance dialysis have limited life expectancy and a high burden of comorbidity, relatively few studies have examined spirituality and religious beliefs among members of this population. Objective: To examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. Design, Setting, and Participants: A cross-sectional survey study was conducted among adults who were undergoing maintenance dialysis at 31 facilities in Seattle, Washington, and Nashville, Tennessee, between April 22, 2015, and October 2, 2018. The survey included a series of questions assessing patients' knowledge, preferences, values, and expectations related to end-of-life care. Data were analyzed from February 12, 2020, to April 21, 2021. Exposures: The importance of religious or spiritual beliefs was ascertained by asking participants to respond to this statement: "My religious or spiritual beliefs are what really lie behind my whole approach to life." Response options were definitely true, tends to be true, tends not to be true, or definitely not true. Main Outcomes and Measurements: Outcome measures were based on self-reported engagement in advance care planning, resuscitation preferences, values regarding life prolongation, preferred place of death, decision-making preference, thoughts or discussion about hospice or stopping dialysis, prognostic expectations, and palliative care needs. Results: A total of 937 participants were included in the cohort, of whom the mean (SD) age was 62.8 (13.8) years and 524 (55.9%) were men. Overall, 435 (46.4%) participants rated the statement about religious or spiritual beliefs as definitely true, 230 (24.6%) rated it as tends to be true, 137 (14.6%) rated it as tends not to be true, and 135 (14.4%) rated it as definitely not true. Participants for whom these beliefs were more important were more likely to prefer cardiopulmonary resuscitation (estimated probability for definitely true: 69.8% [95% CI, 66.5%-73.2%]; tends to be true: 60.8% [95% CI, 53.4%-68.3%]; tends not to be true: 61.6% [95% CI, 53.6%-69.6%]; and definitely not true: 60.6% [95% CI, 52.5%-68.6%]; P for trend = .003) and mechanical ventilation (estimated probability for definitely true: 42.6% [95% CI, 38.1%-47.0%]; tends to be true: 33.5% [95% CI, 25.9%-41.2%]; tends not to be true: 35.1% [95% CI, 27.2%-42.9%]; and definitely not true: 27.9% [95% CI, 19.6%-36.1%]; P for trend = .002) and to prefer a shared role in decision-making (estimated probability for definitely true: 41.6% [95% CI, 37.7%-45.5%]; tends to be true: 35.4% [95% CI, 29.0%-41.8%]; tends not to be true: 36.0% [95% CI, 26.7%-45.2%]; and definitely not true: 23.8% [95% CI, 17.3%-30.3%]; P for trend = .001) and were less likely to have thought or spoken about stopping dialysis. These participants were no less likely to have engaged in advance care planning, to value relief of pain and discomfort, to prefer to die at home, to have ever thought or spoken about hospice, and to have unmet palliative care needs and had similar prognostic expectations. Conclusions and Relevance: The finding that religious or spiritual beliefs were important to most study participants suggests the value of an integrative approach that addresses these beliefs in caring for people who receive dialysis.

Patient and family engagement in the ICU: Report from the task force of the World Federation of Societies of Intensive and Critical Care Medicine.

PURPOSE: Patient and family engagement plays an important role in the intensive care unit (ICU), however the degree to which practices are being implemented globally is not known. MATERIALS: To provide insights, a task force of the World Federation of Societies of Intensive and Critical Care Medicine conducted a cross-sectional survey. RESULTS: A total of 345 responses were received from 40 countries. Varying practices with respect to patient and family engagement were reported. Majority of those responding to individual survey questions (n=109, 61.2%) provided written materials on the ICU to family members. Just over half (n=184, 53.8%) of respondents identified that structured patient and family care conferences were held to review goals of care. Practices such as open visitation were reported by 39.6% (n=136), and family presence during resuscitation were reported to be fully (12%, n=41) or somewhat adopted (33%, n=113) by less than half of respondents. ICU diaries, music or pet therapy, or the use of a patient and family advisory group were reported by less than half of respondents. CONCLUSIONS: We document and hence provide successful implementation techniques, tactics, and strategies that could help clinicians to address barriers to implementing patient and family engagement in the ICU.

Noninvasive Ventilation in Patients With Do-Not-Intubate and Comfort-Measures-Only Orders: A Systematic Review and Meta-Analysis.

OBJECTIVES: To assess the effectiveness of noninvasive ventilation in patients with acute respiratory failure and do-not-intubate or comfort-measures-only orders. DATA SOURCES: MEDLINE, EMBASE, CINAHL, Scopus, and Web of Science from inception to January 1, 2017. STUDY SELECTION: Studies of all design types that enrolled patients in the ICU or hospital ward who received noninvasive ventilation and had preset do-not-intubate or comfort-measures-only orders. DATA EXTRACTION: Data abstraction followed Meta-analysis of Observational Studies in Epidemiology guidelines. Data quality was assessed using a modified Newcastle-Ottawa Scale. DATA SYNTHESIS: Twenty-seven studies evaluating 2,020 patients with do-not-intubate orders and three studies evaluating 200 patients with comfort-measures-only orders were included. In patients with do-not-intubate orders, the pooled survival was 56% (95% CI, 49-64%) at hospital discharge and 32% (95% CI, 21-45%) at 1 year. Hospital survival was 68% for chronic obstructive pulmonary disease, 68% for pulmonary edema, 41% for pneumonia, and 37% for patients with malignancy. Survival was comparable for patients treated in a hospital ward versus an ICU. Quality of life of survivors was not reduced compared with baseline, although few studies evaluated this. No studies evaluated quality of dying in nonsurvivors. In patients with comfort-measures-only orders, a single study showed that noninvasive ventilation was associated with mild reductions in dyspnea and opioid requirements. CONCLUSIONS: A large proportion of patients with do-not-intubate orders who received noninvasive ventilation survived to hospital discharge and at 1 year, with limited data showing no decrease in quality of life in survivors. Provision of noninvasive ventilation in a well-equipped hospital ward may be a viable alternative to the ICU for selected patients. Crucial questions regarding quality of life in survivors, quality of death in nonsurvivors, and the impact of noninvasive ventilation in patients with comfort-measures-only orders remain largely unanswered.

Developing a Research Agenda for Integrating Palliative Care into Critical Care and Pulmonary Practice To Improve Patient and Family Outcomes.

BACKGROUND: Palliative care is a medical specialty and philosophy of care that focuses on reducing suffering among patients with serious illness and their family members, regardless of disease diagnosis or prognosis. As critical illness or moderate to severe pulmonary disease confers significant disease-related symptom burdens, palliative care and palliative care specialists can aid in reducing symptom burden and improving quality of life among these patients and their family members. OBJECTIVE: The objective of this article is to review the existing gaps in evidence for palliative care in pulmonary disease and critical illness and to use an interdisciplinary working group convened by the National Institutes of Health and the National Palliative Care Research Center to develop a research agenda to address these gaps. METHODS: We completed a narrative review of the literature concerning the integration of palliative care into pulmonary and/or critical care. The review was based on recent systematic reviews on these topics as well as a summary of relevant articles identified through hand search. We used this review to identify gaps in current knowledge and develop a research agenda for the future. RESULTS: We identified key areas of need and knowledge gaps that should be addressed to improve palliative care for patients with pulmonary and critical illness. These areas include developing and validating patient- and family-centered outcomes, identifying the key components of palliative care that are effective and cost-effective, developing and evaluating different models of palliative care delivery, and determining the effectiveness and cost-effectiveness of palliative care interventions. CONCLUSIONS: The goal of this research agenda is to encourage researchers, clinicians, healthcare systems, and research funders to identify research that can address these gaps and improve the lives of patients with pulmonary and critical illness and their family members.

The changing role of palliative care in the ICU.

OBJECTIVES: Palliative care is an interprofessional specialty as well as an approach to care by all clinicians caring for patients with serious and complex illness. Unlike hospice, palliative care is based not on prognosis but on need and is an essential component of comprehensive care for critically ill patients from the time of ICU admission. In this clinically focused article, we review evidence of opportunities to improve palliative care for critically ill adults, summarize strategies for ICU palliative care improvement, and identify resources to support implementation. DATA SOURCES: We searched the MEDLINE database from inception through January 2014. We also searched the Reference Library of The Improving Palliative Care in the ICU Project website sponsored by the National Institutes of Health and the Center to Advance Palliative Care, which is updated monthly. We hand-searched reference lists and author files. STUDY SELECTION: Selected studies included all English-language articles concerning adult patients using the search terms 'intensive care' or 'critical care' with 'palliative care,' 'supportive care,' 'end-of-life care,' or 'ethics.' DATA EXTRACTION: : After examination of peer-reviewed original scientific articles, consensus statements, guidelines, and reviews resulting from our literature search, we made final selections based on author consensus. DATA SYNTHESIS: Existing evidence is organized to address: 1) opportunities to alleviate physical and emotional symptoms, improve communication, and provide support for patients and families; 2) models and specific interventions for improving ICU palliative care; 3) available resources for ICU palliative care improvement; and 4) ongoing challenges and targets for future research. Key domains of ICU palliative care have been defined and operationalized as measures of quality. There is increasing recognition that effective integration of palliative care during acute and chronic critical illness may help patients and families face challenges after discharge from intensive care. CONCLUSIONS: Palliative care is increasingly accepted as an essential component of comprehensive care for critically ill patients, regardless of diagnosis or prognosis. A variety of strategies to improve ICU palliative care appear to be effective, and resources including technical assistance and tools are available to support improvement efforts. As the longer-term impact of intensive care on those surviving acute critical illness is increasingly documented, palliative care can help prepare and support patients and families for challenges after ICU discharge. Further research is needed to inform efforts to integrate palliative care with intensive care more effectively and efficiently in and after the ICU and to document improvement using valid and responsive outcome measures.

The association of spiritual care providers' activities with family members' satisfaction with care after a death in the ICU*.

OBJECTIVES: Spiritual distress is common in the ICU, and spiritual care providers are often called upon to provide care for patients and their families. Our goal was to evaluate the activities spiritual care providers' conduct to support patients and families and whether those activities are associated with family satisfaction with ICU care. DESIGN: Prospective cohort study. SETTING: Three hundred fifty-bed tertiary care teaching hospital with 65 ICU beds. SUBJECTS: Spiritual care providers and family members of patients who died in the ICU or within 30 hours of transfer from the ICU. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Spiritual care providers completed surveys reporting their activities. Family members completed validated measures of satisfaction with care and satisfaction with spiritual care. Clustered regression was used to assess the association between activities completed by spiritual care providers and family ratings of care. Of 494 eligible patients, 275 family members completed surveys (response rate, 56%). Fifty-seven spiritual care providers received surveys relating to 268 patients, completing 285 surveys for 244 patients (response rate, 91%). Spiritual care providers commonly reported activities related to supporting religious and spiritual needs (≥ 90%) and providing support for family feelings (90%). Discussions about the patient's wishes for end-of-life care and a greater number of spiritual care activities performed were both associated with increased overall family satisfaction with ICU care (p < 0.05). Discussions about a patient's end-of-life wishes, preparation for a family conference, and total number of activities performed were associated with improved family satisfaction with decision-making in the ICU (p < 0.05). CONCLUSIONS: Spiritual care providers engage in a variety of activities with families of ICU patients; several are associated with increased family satisfaction with ICU care in general and decision-making in the ICU specifically. These findings provide insight into spiritual care provider activities and provide guidance for interventions to improve spiritual care delivered to families of critically ill patients.

Association between Physician Trainee Self-Assessments in Discussing Religion and Spirituality and Their Patients' Reports.

BACKGROUND: Effective physician communication at the end-of-life is a cornerstone to providing patient-centered palliative care. Educational programs in physician communication often rely on self-assessments of physician knowledge and attitudes and seldom provide patients' reports. Thus, it is unclear whether physician self-assessments are associated with patient perspectives. OBJECTIVE: To determine whether physician trainees' self-assessments of their communication skills in religious/spiritual discussions were associated with assessments obtained from patients under their care. DESIGN: Prospective, observational, survey-based study of internal medicine trainees' self-assessments matched with their patients' reports. Data were obtained from preintervention surveys prior to the trainees participating in a communication educational intervention. SETTING AND SUBJECTS: The study took place at two internal medicine training programs, one in the southeastern United States and one in the northwestern United States. Our subjects were 181 physician trainees in internal medicine and 541 patients with advanced medical illnesses under their care. MEASUREMENTS: The outcomes were patient reports of the occurrence of religious/spiritual communication and patient ratings of the quality of this communication. The primary predictor of interest was trainees' preintervention self-assessments of their competency in religious/spiritual communication. RESULTS: Using multiple variable and path analysis we found that trainees' self-assessments of their communication skills in religious/spiritual communication was significantly and positively associated with their patients' reports of the occurrence and ratings of religious/spiritual communication. CONCLUSIONS: Physician trainee self-assessments may be a valid surrogate for patient ratings of quality with respect to religious/spiritual communication. This specific domain of physician-patient communication should receive further investigation as our finding contrasts with reports of more general measures of physician-patient end-of-life communication.

Discussing religion and spirituality is an advanced communication skill: an exploratory structural equation model of physician trainee self-ratings.

BACKGROUND: Communication about religious and spiritual issues is fundamental to palliative care, yet little empirical data exist to guide curricula in this area. The goal of this study was to develop an improved understanding of physicians' perspectives on their communication competence about religious and spiritual issues. METHODS: We examined surveys of physician trainees (n=297) enrolled in an ongoing communication skills study at two medical centers in the northwestern and southeastern United States. Our primary outcome was self-assessed competence in discussing religion and spirituality. We used exploratory structural equation modeling (SEM) to develop measurement and full models for acquisition of self-assessed communication competencies. RESULTS: Our measurement SEM identified two latent constructs that we label Basic and Intermediate Competence, composed of five self-assessed communication skills. The Basic Competence construct included overall satisfaction with palliative care skills and with discussing do not resuscitate (DNR) status. The Intermediate Competence construct included responding to inappropriate treatment requests, maintaining hope, and addressing fears about the end-of-life. Our full SEM model found that Basic Competence predicted Intermediate Competence and that Intermediate Competence predicted competence in religious and spiritual discussions. Years of clinical training directly influenced Basic Competence. Increased end-of-life discussions positively influenced Basic Competence and had a complex association with Intermediate Competence. Southeastern trainees perceived more competence in religious and spiritual discussions than northwestern trainees. CONCLUSION: This study suggests that discussion of religious and spiritual issues is a communication skill that trainees consider more advanced than other commonly taught communication skills, such as discussing DNR orders.

Integrating palliative care in the surgical and trauma intensive care unit: a report from the Improving Palliative Care in the Intensive Care Unit (IPAL-ICU) Project Advisory Board and the Center to Advance Palliative Care.

OBJECTIVE: Although successful models for palliative care delivery and quality improvement in the intensive care unit have been described, their applicability in surgical intensive care unit settings has not been fully addressed. We undertook to define specific challenges, strategies, and solutions for integration of palliative care in the surgical intensive care unit. DATA SOURCES: We searched the MEDLINE database from inception to May 2011 for all English language articles using the term "surgical palliative care" or the terms "surgical critical care," "surgical ICU," "surgeon," "trauma" or "transplant," and "palliative care" or "end-of- life care" and hand-searched our personal files for additional articles. Based on review of these articles and the experiences of our interdisciplinary expert Advisory Board, we prepared this report. DATA EXTRACTION AND SYNTHESIS: We critically reviewed the existing literature on delivery of palliative care in the surgical intensive care unit setting focusing on challenges, strategies, models, and interventions to promote effective integration of palliative care for patients receiving surgical critical care and their families. CONCLUSIONS: Characteristics of patients with surgical disease and practices, attitudes, and interactions of different disciplines on the surgical critical care team present distinctive issues for intensive care unit palliative care integration and improvement. Physicians, nurses, and other team members in surgery, critical care and palliative care (if available) should be engaged collaboratively to identify challenges and develop strategies. "Consultative," "integrative," and combined models can be used to improve intensive care unit palliative care, although optimal use of trigger criteria for palliative care consultation has not yet been demonstrated. Important components of an improvement effort include attention to efficient work systems and practical tools and to attitudinal factors and "culture" in the unit and institution. Approaches that emphasize delivery of palliative care together with surgical critical care hold promise to better integrate palliative care into the surgical intensive care unit.

A phase II randomized placebo-controlled trial of omega-3 fatty acids for the treatment of acute lung injury.

OBJECTIVES: Administration of eicosapentaenoic acid and docosahexanoic acid, omega-3 fatty acids in fish oil, has been associated with improved patient outcomes in acute lung injury when studied in a commercial enteral formula. However, fish oil has not been tested independently in acute lung injury. We therefore sought to determine whether enteral fish oil alone would reduce pulmonary and systemic inflammation in patients with acute lung injury. DESIGN: Phase II randomized controlled trial. SETTING: Five North American medical centers. PATIENTS: Mechanically ventilated patients with acute lung injury ≥18 yrs of age. INTERVENTIONS: Subjects were randomized to receive enteral fish oil (9.75 g eicosapentaenoic acid and 6.75 g docosahexanoic acid daily) or saline placebo for up to 14 days. MEASUREMENTS AND MAIN RESULTS: Bronchoalveolar lavage fluid and blood were collected at baseline (day 0), day 4 ± 1, and day 8 ± 1. The primary end point was bronchoalveolar lavage fluid interleukin-8 levels. Forty-one participants received fish oil and 49 received placebo. Enteral fish oil administration was associated with increased serum eicosapentaenoic acid concentration (p < .0001). However, there was no significant difference in the change in bronchoalveolar lavage fluid interleukin-8 from baseline to day 4 (p = .37) or day 8 (p = .55) between treatment arms. There were no appreciable improvements in other bronchoalveolar lavage fluid or plasma biomarkers in the fish oil group compared with the control group. Similarly, organ failure score, ventilator-free days, intensive care unit-free days, and 60-day mortality did not differ between the groups. CONCLUSIONS: Fish oil did not reduce biomarkers of pulmonary or systemic inflammation in patients with acute lung injury, and the results do not support the conduct of a larger clinical trial in this population with this agent. This experimental approach is feasible for proof-of-concept studies evaluating new treatments for acute lung injury.

Comparing clinician ratings of the quality of palliative care in the intensive care unit.

OBJECTIVE: There are numerous challenges to successfully integrating palliative care in the intensive care unit. Our primary goal was to describe and compare the quality of palliative care delivered in an intensive care unit as rated by physicians and nurses working in that intensive care unit. DESIGN: Multisite study using self-report questionnaires. SETTING: Thirteen hospitals throughout the United States. PARTICIPANTS: Convenience sample of 188 physicians working in critical care (attending physicians, critical care fellows, resident physicians) and 289 critical care nurses. MEASUREMENTS AND MAIN RESULTS: Clinicians provided overall ratings of the care delivered by either nurses or physicians in their intensive care unit for each of seven domains of intensive care unit palliative care using a 0-10 scale (0 indicating the worst possible and 10 indicating the best possible care). Analyses included descriptive statistics to characterize measurement characteristics of the ten items, paired Wilcoxon tests comparing item ratings for the domain of symptom management with all other item ratings, and regression analyses assessing differences in ratings within and between clinical disciplines. We used p < .001 to denote statistical significance to address multiple comparisons. The ten items demonstrated good content validity with few missing responses or ceiling or floor effects. Items receiving the lowest ratings assessed spiritual support for families, emotional support for intensive care unit clinicians, and palliative-care education for intensive care unit clinicians. All but two items were rated significantly lower than the item assessing symptom management (p < .001). Nurses rated nursing care significantly higher (p < .001) than physicians rated physician care in five domains. In addition, although nurses and physicians gave comparable ratings to palliative care delivered by nurses, nurses' and physicians' ratings of physician care were significantly different with nurse ratings of this care lower than physician ratings on all but one domain. CONCLUSION: Our study supports the content validity of the ten overall rating items and supports the need for improvement in several aspects of palliative care, including spiritual support for families, emotional support for clinicians, and clinician education about palliative care in the intensive care unit. Furthermore, our findings provide some preliminary support for surveying intensive care unit clinicians as one way to assess the quality of palliative care in the intensive care unit.

American College of Chest Physicians consensus statement on the management of dyspnea in patients with advanced lung or heart disease.

BACKGROUND: This consensus statement was developed based on the understanding that patients with advanced lung or heart disease are not being treated consistently and effectively for relief of dyspnea. METHODS: A panel of experts was convened. After a literature review, the panel developed 23 statements covering five domains that were considered relevant to the topic condition. Endorsement of these statements was assessed by levels of agreement or disagreement on a five-point Likert scale using two rounds of the Delphi method. RESULTS: The panel defined the topic condition as "dyspnea that persists at rest or with minimal activity and is distressful despite optimal therapy of advanced lung or heart disease." The five domains were: measurement of patient-reported dyspnea, oxygen therapy, other therapies, opioid medications, and ethical issues. In the second round of the Delphi method, 34 of 56 individuals (61%) responded, and agreement of at least 70% was achieved for 20 of the 23 statements. CONCLUSIONS: For patients with advanced lung or heart disease, we suggest that: health-care professionals are ethically obligated to treat dyspnea, patients should be asked to rate the intensity of their breathlessness as part of a comprehensive care plan, opioids should be dosed and titrated for relief of dyspnea in the individual patient, both the patient and clinician should reassess whether specific treatments are serving the goal of palliating dyspnea without causing adverse effects, and it is important for clinicians to communicate about palliative and end-of-life care with their patients.

Spiritual care of families in the intensive care unit.

OBJECTIVES: There is growing recognition of the importance of spiritual care as a quality domain for critically ill patients and their families, but there is a paucity of research to guide quality improvement in this area. Our goals were to: 1) determine whether intensive care unit (ICU) family members who rate an item about their spiritual care are different from family members who skip the item or rate the item as "not applicable" and 2) identify potential determinants of higher family satisfaction with spiritual care in the ICU. DESIGN: Cross-sectional study, using data from a cluster randomized trial aimed at improving end-of-life care in the ICU. SETTING: ICUs in ten Seattle-area hospitals. SUBJECTS: A total of 356 family members of patients dying during an ICU stay or within 24 hrs of ICU discharge. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Family members were surveyed about spiritual care in the ICU. Chart abstractors obtained clinical variables including end-of-life care processes and family conference data. The 259 of 356 family members (73%) who rated their spiritual care were slightly younger than family members who did not rate this aspect of care (p = .001). Multiple regression revealed family members were more satisfied with spiritual care if a pastor or spiritual advisor was involved in the last 24 hrs of the patient's life (p = .007). In addition, there was a strong association between satisfaction with spiritual care and satisfaction with the total ICU experience (p < .001). Ratings of spiritual care were not associated with any other demographic or clinical variables. CONCLUSIONS: These findings suggest that for patients dying in the ICU, clinicians should assess each family's spiritual needs and consult a spiritual advisor if desired by the family. Further research is needed to develop a comprehensive approach to ICU care that meets not only physical and psychosocial but also spiritual needs of patients and their families.

A good death: a qualitative study of patients with advanced AIDS.

The objective of this study was to identify and describe the domains that define a "good" versus "bad" death from the perspective of patients with advanced AIDS. We analyzed qualitative data from face-to-face interviews with 35 patients with C3 AIDS. An experienced research interviewer asked the patients to describe a good and bad death. Investigators used the principles of grounded theory to analyze the interview transcripts and identify the major domains defining a "good" versus a "bad" death. We identified 15 domains, of which 12 were mentioned by at least two participants. The 12 domains include: symptoms, quality of life, people present, dying process, location, a sense of resolution, patient control of treatment, issues of spirituality, death scene, physician-assisted suicide, aspects of medical care, and acceptance of death. Within these, we identified 38 sub-categories representing specific aspects of the domains that shape a "good" versus "bad" death for the patients in this study. The identified 12 major domains encompass the major determinants of a "good" versus "bad" death from the perspective of patients with advanced AIDS. A better understanding of these domains may enable clinicians to more fully appreciate the experiences of their dying patients and identify ways to improve the care they provide at the end of life.