EMPOWER: A Multi-Site Pilot Trial to Reduce Distress in Surrogate Decision-Makers in the ICU.

CONTEXT: Efforts to reduce the psychological distress of surrogate decision-makers of critically ill patients have had limited success, and some have even exacerbated distress. OBJECTIVES: The aim of this study was to determine the feasibility, acceptability, and preliminary efficacy of EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), an ultra-brief (∼2-hour), 6-module manualized psychological intervention for surrogates. METHODS: Surrogates who reported significant anxiety and/or an emotionally close relationship with the patient (n=60) were randomized to receive EMPOWER or enhanced usual care (EUC) at one of three metropolitan hospitals. Participants completed evaluations of EMPOWER's acceptability and measures of psychological distress pre-intervention, immediately post-intervention, and at 1- and 3-month follow-up assessments. RESULTS: Delivery of EMPOWER appeared feasible, with 89% of participants completing all 6 modules, and acceptable, with high ratings of satisfaction (mean=4.5/5, SD = .90). Compared to EUC, intent-to-treat analyses showed EMPOWER was superior at reducing peritraumatic distress (Cohen's d = -0.21, small effect) immediately post-intervention and grief intensity (d = -0.70, medium-large effect), posttraumatic stress (d = -0.74, medium-large effect), experiential avoidance (d = -0.46, medium effect), and depression (d = -0.34, small effect) 3 months post-intervention. Surrogate satisfaction with overall critical care (d = 0.27, small effect) was higher among surrogates randomized to EMPOWER. CONCLUSIONS: EMPOWER appeared feasible and acceptable, increased surrogates' satisfaction with critical care, and prevented escalation of posttraumatic stress, grief, and depression 3 months later.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Filipino American and Korean American Patients.

As of 2019, there are 4.2 million Filipino Americans (FAs) and 1.9 million Korean Americans (KAs) in the United States, largely concentrated in New York, California, Texas, Illinois, and Washington. In both populations, similar to the broader U.S. culture, one can find health literacy gaps around understanding and utilizing palliative care. In this article, we provide 10 cultural pearls to guide clinicians on how to sensitively approach FA and KA groups when addressing palliative and end-of-life (EOL) discussions. We fully celebrate that every person is an individual and care should be tailored to each person's goals, values, and preference. In addition, there are several cultural norms that, when appreciated and celebrated, may help clinicians to improve serious illness care and EOL discussions for members of these populations.

An Intensive Longitudinal Assessment Approach to Surveilling Trajectories of Burnout over the First Year of the COVID Pandemic.

Frontline clinicians responding to the COVID-19 pandemic are at increased risk of burnout, but less is known about the trajectory of clinician burnout as caseloads increase and decrease. Personal and professional resources, including self-efficacy and hospital support, can attenuate the risk of burnout. Yet, empirical data documenting how burnout and resources changed as the pandemic waxed and waned are limited. This intensive longitudinal prospective study employed ecological momentary assessment methods to examine trajectories of burnout and resources over the pandemic's first year in a New York City hospital. A 10-item survey was emailed every 5 days to frontline clinicians (physicians, nurses, and physician assistants). The primary outcome was a single-item validated measure of burnout; predictors included daily hospital COVID-19-related caseloads and personal and professional resources. Clinicians (n = 398) completed the initial survey and an average of 12 surveys over the year. Initially, 45.3% of staff reported burnout; over the year, 58.7% reported burnout. Following the initial COVID peak, caseloads declined, and burnout levels declined. During the second wave of COVID, as caseloads increased and remained elevated and personal and professional resource levels decreased, burnout increased. This novel application of intensive longitudinal assessment enabled ongoing surveillance of burnout and permitted us to evaluate how fluctuations in caseload intensity and personal and professional resources related to burnout over time. The surveillance data support the need for intensified resource allocation during prolonged pandemics.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Chinese American Patients.

The Chinese American population is one of the fastest-growing communities in the United States, composed of ∼5.4 million people, and represents ∼5.5% of overseas Chinese populations. With an expected exponential population rise, Chinese American patients who experience serious illness or approach end-of-life (EOL) may find their cultural values influencing the medical care they receive. Palliative care clinicians must recognize diverse cultural beliefs and preferences of Chinese American patients and their families. In this study, we provide 10 cultural pearls to guide the provision of palliative and EOL care for Chinese American patients, including discussions of Chinese traditions, communication strategies for Chinese patients and families, advance care planning, and EOL care beliefs.

AD-LAST! An interdisciplinary clinical workshop to improve cultural and spiritual awareness in advance care planning skills.

OBJECTIVES: Clinicians report training deficits in advance care planning (ACP), including limits to their understanding of cultural/spiritual influences on patient decision-making and skills in interdisciplinary teamwork. This study describes Advance Directives-Live Action Simulation Training (AD-LAST), an interdisciplinary experiential and didactic training program for discussing ACP and end-of-life (EOL) care. AD-LAST highlights cultural/spiritual variations in medical decision-making. METHODS: Prospective educational cohort study with pre-post intervention survey. AD-LAST incorporated standard curricular tools for didactic and experiential training in ACP/EOL communication. Study conducted in an urban community teaching hospital in Queens, NY, one of the most diverse counties in the USA. Participants included physicians, house staff, nurses, therapists, and other disciplines. AD-LAST format was a one-day workshop. The morning focused on didactic teaching using widely available curricular tools. The afternoon involved experiential practice with standardized patient-actors. Pre-post intervention questionnaires assessed ACP operational knowledge and self-efficacy (i.e., self-confidence in skills) in ACP and EOL communication. Repeated measure ANOVAs evaluated changes from pretest to posttest in knowledge and self-efficacy. RESULTS: A total of 163 clinical staff participated in 21 AD-LAST training sessions between August 2015 and January 2019. Participants displayed a significant increase from pretest to posttest in total knowledge (p < 0.001), ACP procedural knowledge (p < 0.001), ACP communication/relationships knowledge (p < 0.001), and self-efficacy (p < 0.001). Knowledge and self-efficacy were not correlated and represented independent outcomes. Postprogram evaluations showed greater than 96% of participants were highly satisfied with AD-LAST, especially the opportunity to practice skills in real-time and receive feedback from members of other professional groups. SIGNIFICANCE OF RESULTS: AD-LAST, a multifaceted training program deployed in an interdisciplinary setting, is effective for increasing ACP knowledge and self-efficacy, including the capacity to address cultural/spiritual concerns. The use of standard tools facilitates dissemination. The use of case simulations reinforces learning.

Top Ten Tips Palliative Care Clinicians Should Know About Navigating the Needs of Adults with Intellectual Disabilities.

As many people with intellectual disabilities (ID) live longer, the need for access to quality palliative care (PC) rises. People with ID realize significant barriers and inequities in accessing health care and PC. The need for integrated disability and PC services with extensive collaboration is great. The following tips are for PC clinicians caring for people with ID, their families, caregivers, and the community. While patient-centered care is difficult to distill into "tips," this article, written by an interdisciplinary team of PC and ID specialists, offers resources and references to improve the care provided to people with ID and serious illnesses.

Factors Associated with Burnout among Resident Physicians Responding to the COVID-19 Pandemic: A 2-Month Longitudinal Observation Study.

BACKGROUND: Burnout during residency may be a function of intense professional demands and poor work/life balance. With the onset of the COVID-19 pandemic, NYC hospital systems were quickly overwhelmed, and trainees were required to perform beyond the usual clinical duties with less supervision and limited education. OBJECTIVE: The present longitudinal study examined the effects of COVID-19 caseload over time on burnout experienced by resident physicians and explored the effects of demographic characteristics and organizational and personal factors as predictors of burnout severity. METHODS: This study employed a prospective design with repeated measurements from April 2020 to June 2020. Participants were surveyed about their well-being every 5 days. Predictors included caseload, sociodemographic variables, self-efficacy, hospital support, perceived professional development, meaning in work, and postgraduate training level. RESULTS: In total, 54 resident physicians were recruited, of whom 50% reported burnout on initial assessment. Periods of higher caseload were associated with higher burnout. PGY-3 residents reported more burnout initially but appeared to recover faster compared to PGY-1 residents. Examined individually, higher self-efficacy, professional development, meaningful work, and hospital support were associated with lower burnout. When all four predictors were entered simultaneously, only self-efficacy was associated with burnout. However, professional development, meaningful work, and hospital support were associated with self-efficacy. CONCLUSION: Burnout among residency is prevalent and may have implications for burnout during later stages of a physician's career. Self-efficacy is associated with lower burnout and interventions to increase self-efficacy and the interpersonal factors that promote self-efficacy may improve physician physical and emotional well-being.

Associations of Intellectual Disability with Cardiopulmonary Resuscitation and Endotracheal Intubation at End of Life.

Background: Little is known about end-of-life intensive care provided to patients with intellectual disabilities (ID). Objectives: To identify differences in receipt of end-of-life cardiopulmonary resuscitation (CPR) and endotracheal intubation among adult patients with and without ID and examine whether do-not-resuscitate orders (DNRs) mediate associations between ID and CPR. Design: Exploratory matched cohort study using medical records of inpatient decedents treated between 2012 and 2018. Results: Patients with ID (n = 37) more frequently received CPR (37.8% vs. 21.6%) and intubation (78.4% vs. 47.8%) than patients without ID (n = 74). In multivariable models, ID was associated with receiving CPR (relative risk [RR] = 2.92, 95% confidence interval = 1.26-6.78, p = 0.012), but not intubation. Patients with ID less frequently had a DNR placed (67.6% vs. 91.9%), mediating associations between ID and CPR. Conclusions: In this pilot study, ID was associated with increased likelihood of receiving end-of-life CPR, likely due to lower utilization of DNRs among patients with ID. Further research is needed to confirm these results.

Development and preliminary evaluation of EMPOWER for surrogate decision-makers of critically ill patients.

OBJECTIVE: The objectives of this study were to develop and refine EMPOWER (Enhancing and Mobilizing the POtential for Wellness and Resilience), a brief manualized cognitive-behavioral, acceptance-based intervention for surrogate decision-makers of critically ill patients and to evaluate its preliminary feasibility, acceptability, and promise in improving surrogates' mental health and patient outcomes. METHOD: Part 1 involved obtaining qualitative stakeholder feedback from 5 bereaved surrogates and 10 critical care and mental health clinicians. Stakeholders were provided with the manual and prompted for feedback on its content, format, and language. Feedback was organized and incorporated into the manual, which was then re-circulated until consensus. In Part 2, surrogates of critically ill patients admitted to an intensive care unit (ICU) reporting moderate anxiety or close attachment were enrolled in an open trial of EMPOWER. Surrogates completed six, 15-20 min modules, totaling 1.5-2 h. Surrogates were administered measures of peritraumatic distress, experiential avoidance, prolonged grief, distress tolerance, anxiety, and depression at pre-intervention, post-intervention, and at 1-month and 3-month follow-up assessments. RESULTS: Part 1 resulted in changes to the EMPOWER manual, including reducing jargon, improving navigability, making EMPOWER applicable for a range of illness scenarios, rearranging the modules, and adding further instructions and psychoeducation. Part 2 findings suggested that EMPOWER is feasible, with 100% of participants completing all modules. The acceptability of EMPOWER appeared strong, with high ratings of effectiveness and helpfulness (M = 8/10). Results showed immediate post-intervention improvements in anxiety (d = -0.41), peritraumatic distress (d = -0.24), and experiential avoidance (d = -0.23). At the 3-month follow-up assessments, surrogates exhibited improvements in prolonged grief symptoms (d = -0.94), depression (d = -0.23), anxiety (d = -0.29), and experiential avoidance (d = -0.30). SIGNIFICANCE OF RESULTS: Preliminary data suggest that EMPOWER is feasible, acceptable, and associated with notable improvements in psychological symptoms among surrogates. Future research should examine EMPOWER with a larger sample in a randomized controlled trial.

Questioning Capacity in an Elderly Jamaican Man with Terminal Cancer Exhibiting Near-Death Awareness: A Case Report and Review of Literature.

Background: Near-death awareness (NDA) refers to visions and dreams commonly experienced by terminally ill individuals within months to hours before death. Methods: A case report of a 68-year-old Jamaican male diagnosed with advanced cholangiocarcinoma, who experienced visions of his deceased mother during hospitalization. Results: This article discusses how to differentiate NDA from delirium, core components for determining decisional capacity, and how clinicians can use a cultural guide to optimize patient-centered care. Conclusion: Improved recognition of NDA may promote cultural humility/competency and help to differentiate NDA from an underlying medical/psychiatric condition. It may assist the clinician in understanding the significance of NDA and the comfort and meaning these experiences may hold for both the individual and their family.

Dementia and Early Do-Not-Resuscitate Orders Associated With Less Intensive of End-of-Life Care: A Retrospective Cohort Study.

BACKGROUND: Dementia is a leading cause of death among US older adults. Little is known about end-of-life care intensity and do-not-resuscitate orders (DNRs) among patients with dementia who die in hospital. AIM: Examine the relationship between dementia, DNR timing, and end-of-life care intensity. DESIGN: Observational cohort study. SETTING/PARTICIPANTS: Inpatient electronic health record extraction for 2,566 persons age 65 and older who died in 2 New York City hospitals in the United States from 2015 to 2017. RESULTS: Multivariable logistic regression analyses modeled associations between dementia diagnosis, DNR timing, and 6 end-of-life care outcomes. 31% of subjects had a dementia diagnosis; 23% had a DNR on day of hospital admission. Patients with dementia were 18%-40% less likely to have received 4 of 6 types of intensive care (mechanical ventilation AOR: 0.82, 95%CI: 0.67 -1.00; intensive care unit admission AOR: 0.60, 95%CI: 0.49-0.83). Having a DNR on file was inversely associated with staying in the intensive care unit (AOR: 0.57, 95%CI: 0.47-0.70) and avoiding other intensive care measures. DNR placement later during the hospitalization and not having a DNR were associated with more intensive care compared to having a DNR upon admission. CONCLUSIONS: Having dementia and a do-not resuscitate order upon hospital admission are associated with less intensive end-of-life care. Additional research is needed to understand why persons with dementia receive less intensive care. In clinical practice, encouraging advance care planning prior to and at hospital admission may be particularly important for patients wishing to avoid intensive end-of-life care, including patients with dementia.

Heart to Heart Cards: A Novel, Culturally Tailored, Community-Based Advance Care Planning Tool for Chinese Americans.

CONTEXT: A paucity of literature describes the growing Chinese American community's end-of-life (EOL) priorities and preferences. OBJECTIVE: Develop a culturally-tailored advance care planning (ACP) tool to understand the EOL preferences of this underserved minority group. METHODS: Informed by the Cultural Appropriateness Theory, the Chinese American Coalition for Compassionate Care (CACCC) developed Heart to Heart (HTH) Cards using a 3-step approach. First, CACCC created and refined a list of bilingual, culturally relevant EOL issues. Next, CACCC organized the EOL issues into a card deck. Finally, CACCC developed a unique playstyle of the cards-the HTH Café. From 2014-2019, CACCC recruited Chinese American volunteers and participants for HTH Cafés. Following each Café, participants completed an anonymous survey describing their sociodemographics, top 3 cards, and café evaluation. RESULTS: The 54 HTH Cards were organized into 4 suits (spiritual, physical, financial/legal, and social). Each card displayed a culturally-tailored EOL issue in English and Chinese. Playstyles included one-on-one and group formats (ie. HTH Café). CACCC volunteers conducted 316 HTH Cafés for 2,267 Chinese American adults. Most participants were female (61.6%), between 18-50 years old (56.7%), lived in California (80.2%) and born in Asia (74.3%). The top priority (25.5%) was "If I'm going to die anyway, I don't want to be kept alive by machines." Participants thought the session was pleasant (99.5%) and expressed intent to complete advance directives (86.5%). CONCLUSION: HTH Cards represents the first, theory-driven, culturally-tailored ACP tool for Chinese Americans. More research is needed to establish its impact on ACP conversations and outcomes.

Do Hispanics prefer to be full code at the end of life? The impact of palliative care consults on clarifying code status preferences and hospice referrals in Spanish-speaking patients.

BACKGROUND: Hispanics often have disparities at the end of life. They are more likely to die full code and less likely to have discussions regarding prognosis and do not resuscitate (DNR)/do not intubate (DNI), despite studies showing Hispanic values comfort over the extension of life. Barriers to patient-centered care include language,socioeconomic status and health literacy. CONTEXT: We evaluated the impact of palliative care (PC) consults on the change of code status and hospice referrals, comparing seriously ill Hispanic and non-Hispanic white patients. METHOD: A retrospective cohort study of all white and Hispanic patients referred to the PC service of a county hospital from 2006 to 2012. We evaluated ethnicity, language, code status at admission and after PC consult, and hospice discharge. Chi-squared tests were used to analyze characteristics among three groups: non-Hispanic white, English-speaking Hispanic, and Spanish-speaking Hispanic patients. RESULTS: Of 925 patients, 511 (55%) were non-Hispanic white, 208 (23%) were English-speaking Hispanic, and 206 (22%) were Spanish-speaking Hispanic patients. On admission, there was no statistically significant difference in code status among the three groups (57%, 64%, and 59% were full code, respectively, p = 0.5). After PC consults, Spanish-speaking Hispanic patients were more likely to change their code status to DNR/DNI when compared with non-Hispanic white and English-speaking Hispanic patients (44% vs. 32% vs. 28%, p = 0.05). Spanish-speaking Hispanic patients were more likely to be discharged to hospice when compared with English-speaking Hispanics and non-Hispanic whites (33%, 29%, and 23%, respectively, p = 0.04). SIGNIFICANCE OF RESULTS: Spanish-speaking Hispanic patients were more likely to change from full code to DNR/DNI compared with non-Hispanic white and English-speaking Hispanic patients, despite similar code status preferences on admission. They were also more likely to be discharged to hospice. PC consults may play an important role in helping patients to align their care with their values and may prevent unwanted aggressive interventions at the end of life.

A Comprehensive Approach to Palliative Care during the Coronavirus Pandemic.

Context: The COVID-19 pandemic resulted in a surge of critically ill patients that strained health care systems throughout New York City in March and April of 2020. At the peak of the crisis, consults for palliative care increased four- to sevenfold at NewYork-Presbyterian (NYP), an academic health care system with 10 campuses throughout New York City. We share our challenges, solutions, and lessons learned to help peer institutions meet increased palliative care demands during future crises and address pre-existing palliative care subspecialist shortages during nonpandemic times. Methods: In response to the increased demand, palliative care physician and administrative leadership at NYP piloted multiple creative care models to expand access to palliative care outpatient and inpatient services. The care models included virtual outpatient management of existing patients, embedded palliative care staff, education for providers, multidisciplinary family support, hospice units (which allowed for family visitation), and team expansion through training other disciplines (primarily psychiatry) and deploying an ePalliative Care service (staffed by out-of-state volunteers). Conclusion: Our comprehensive response successfully expanded the palliative care team's reach, and, at the height of the pandemic, allowed our teams to meet the increased demand for palliative care consults. We learned that flexibility and adaptability were critical to responding to a rapidly evolving crisis. Physician and family feedback and preliminary data suggest that virtual outpatient visits, embedded staff, hospice units, and team expansion through training other disciplines and deploying ePalliative Care services were impactful interventions.

Can Orthodox Jewish Patients Undergo Palliative Extubation? A Challenging Ethics Case Study.

According to Jewish law/ethics, continuous life-sustaining therapy may not be withdrawn after its introduction, unless the patient has improved and no longer has a medical indication for the treatment. We report the case of an 88-year-old Orthodox Jewish patient, on invasive mechanical ventilation, with severe anoxic brain injury after multiple cardiac arrests. Although the patient's son informed the palliative care team that his father did not want to be in pain or to linger in a vegetative state when terminally ill, the mechanical ventilation was keeping him alive with a poor neurological prognosis. Additionally, the patient had previously stated his wish to observe Orthodox Jewish principles regarding end-of-life care. After extensive discussion, the family Rabbi clarified that it would be acceptable to withdraw mechanical ventilation if there were a "reasonable expectation" he would breathe on his own for a "reasonable amount of time." Thus, if the patient's death were to occur, it would not be an immediate consequence the normal ventilator weaning process. Following intermediation by the hospital Rabbi, the definition of what would be a "reasonable expectation" and "reasonable amount of time" was established by the family Rabbi as "over 50%" and "on the order of hours," respectively. Following pulmonary consultation, the patient underwent palliative extubation and, 12 hours after the procedure, died comfortably surrounded by the family. In conclusion, the collaborative and interdisciplinary work among the family Rabbi, hospital Rabbi, and the various medical teams allowed the development of a plan that met all of the patient's personal and religious wishes and beliefs.

Management of Respiratory Symptoms in Those with Serious Illness.

Respiratory symptoms are common in patients living with serious illness, both in cancer and nonmalignant conditions. Common symptoms include dyspnea (breathlessness), cough, malignant pleural effusions, airway secretions, and hemoptysis. Basic management of respiratory symptoms is within the scope of primary palliative care. There are pharmacologic and nonpharmacologic approaches to treating respiratory symptoms. This article provides clinicians with treatment approaches to these burdensome symptoms.