Disparities in end-of-life care for racial minorities: a narrative review.

BACKGROUND AND OBJECTIVE: The issue of racial and ethnic disparities in healthcare has been a significant concern for many years. It encompasses various aspects, including disease prevention, diagnosis, management, and end-of-life (EOL) care. Research has found that timely intervention with palliative care can result in better EOL care and reduced healthcare costs. This review aims to detail the role of healthcare disparities impacting palliative care, hospice enrollment, and EOL care in patients with serious illnesses who are facing EOL. It addresses the factors that play a role in creating these disparities and describes specific interventions that may reduce disparities in the provision of EOL care. METHODS: Authors searched, PubMed Central, Medline, and PubMed databases using Racial Disparity and End-of-Life/Palliative Care combinations. A total of 57 studies were identified. All articles were reviewed, and the available evidence was synthesized and to identify key domains in EOL care impacted by racial disparities and the factors contributing to them. KEY CONTENT AND FINDINGS: Several patient, provider, and institutional level factors may be responsible for disparities seen in EOL care, including health literacy, access to care, mistrust of the healthcare system, social determinants of health (SDH), medical racism, cultural and religious customs, and communication at EOL. Disparities in EOL care experienced by minority patients is an extension of the systemic and institutionalized racism rampant in the healthcare system. Providers must work on multiple fronts to address this inequity and injustice, the first of which is recognition and conversation regarding disparities in EOL care. CONCLUSIONS: Disparities in communication, palliative and hospice care utilization, and symptom management must be eradicated. Palliative care and hospice should be made accessible for all patients and families experiencing severe illness regardless of their racial or ethnic background.

Code Status Orders: Do the Options Matter?

BACKGROUND: Code status orders in hospitalized patients guide urgent medical decisions. Inconsistent terminology and treatment options contribute to varied interpretations. OBJECTIVE: To compare two code status order options, traditional (three option) and modified to include additional care options (four option). DESIGN: Prospective, randomized, cross-sectional survey conducted on February-March 2020. Participants were provided with six clinical scenarios and randomly assigned to the three or four option code status order. In three scenarios, participants determined the most appropriate code status. Three scenarios provided clinical details and code status and respondents were asked whether they would provide a particular intervention. This study was conducted at three urban, academic hospitals. PARTICIPANTS: Clinicians who routinely utilize code status orders. Of 4006 participants eligible, 549 (14%) were included. MAIN MEASURES: The primary objective was consensus (most commonly selected answer) based on provided code status options. Secondary objectives included variables associated with participant responses, participant code status model preference, and participant confidence about whether their selections would match their peers. KEY RESULTS: In the three scenarios participants selected the appropriate code status, there was no difference in consensus for the control scenario, and higher consensus in the three option group (p-values < 0.05) for the remaining two scenarios. In the scenarios to determine if a clinical intervention was appropriate, two of the scenarios had higher consensus in the three option group (p-values 0.018 and < 0.05) and one had higher consensus in the four option group (p-value 0.001). Participants in the three option model were more confident that their peers selected the same code status (p-value 0.0014); however, most participants (72%) preferred the four option model. CONCLUSIONS: Neither code status model led to consistent results. The three option model provided consistency more often; however, the majority of participants preferred the four option model.

Palliative and End-of-Life Care After Severe Stroke.

BACKGROUND AND OBJECTIVES: The distinct illness trajectory after acute ischemic stroke demands a better understanding of the utilization of palliative care consultations (PCC) for this patient cohort. This study sought to determine the prevalence, predictors, and outcomes associated with PCC for patients hospitalized with severe ischemic stroke. METHODS: This multicenter cohort study was conducted at four hospitals (2 comprehensive and 2 primary stroke centers) between January, 2016 and December, 2019. We included all patients with a discharge diagnosis of ischemic stroke and an initial National Institutes of Health Stroke Scale (NIHSS) of 10 or greater. We compared patient sociodemographic, clinical and care characteristics as well as hospital outcomes between patients who did and did not receive PCC. RESULTS: The study included 1297 patients hospitalized with severe ischemic stroke. PCC occurred for 20% of all patients and this proportion varied across institutions from 11.9% to 43%. Less than half (43%) of patients who died in the hospital. In multivaraible analysis, PCC was less likely in female patients (OR .76, 95% CI .59, .99, P=0.04) but more likely in patients with higher NIHSS (OR1.95, 95% CI 1,13, 3.37, P=0.02). Patients with PCC had higher rates of moving to a plan focused on comfort measures (CMO) (P<0.01) and removal of artificial nutrition as part of a move to CMO (P<0.01). In a sub analysis of patients who died in the hospital and received PCC, patients who died on or before hospital day 3 were less likely to receive PCC than patients who died on or after hospital day 4 (24% v. 51%) (P=<0.01). CONCLUSIONS: Most patients with severe stroke do not receive PCC, even among those who experience in-hospital death. The results of this study indicate there are missed opportunities for PCC to help reduce suffering after severe stroke.

High Moral Distress in Clinicians Involved in the Care of Undocumented Immigrants Needing Dialysis in the United States.

Purpose: To understand clinicians' perspectives on dialysis care of undocumented immigrants. Methods: A 21-item Internet-based survey using Survey Monkey® was sent to 765 physicians and nurses at a safety-net hospital located in Indianapolis, IN. Moral distress thermometer score was used to assess moral distress (MD). Participants were asked to rate their MD regarding five ethically challenging clinical situations: (1) frail patients with multiple comorbidities and poor quality of life, (2) patients with dementia, (3) a noncompliant patient with frequent emergency room (ER) visits, (4) violent patients with potential harm to others, and (5) undocumented immigrants receiving emergent dialysis only. Key Results: There were 299 of 775 participants (38.5% response rate) who completed the survey; 49.5% were physicians. Nearly half (48%) reported severe MD and 33% reported none to mild. In adjusted ordered logistic regression, females had significantly higher odds of MD (odds ratio [OR]=2.12, CI 1.03-4.33), and nurses had lower MD than fellows/residents (OR=0.14, CI 0.03-0.63). Over 70% of respondents attributed their distress to suffering of patients due to inadequate dialysis and tension between what is considered ethical and the law allows or forbids; 78% believed the patients' quality of life to be worse than those who receive routine hemodialysis. Among nephrologists, caring for these patients led to MD levels like that of dealing with a violent dialysis patient. Conclusions: Emergent-only dialysis causes significant MD in clinicians. Legal and fiscal policies need to be balanced with the ethical and moral commitments of providers for ensuring standard of care to all.

A National Survey of Practice Patterns for Accepting Living Kidney Donors With Prior COVID-19.

INTRODUCTION: A critical question facing transplant programs is whether, when, and how to safely accept living kidney donors (LKDs) who have recovered from COVID-19 infection. The purpose of the study is to understand current practices related to accepting these LKDs. METHODS: We surveyed US transplant programs from 3 September through 3 November 2020. Center level and participant level responses were analyzed. RESULTS: A total of 174 respondents from 115 unique centers responded, representing 59% of US LKD programs and 72.4% of 2019 and 72.5% of 2020 LKD volume (Organ Procurement and Transplantation Network-OPTN 2021). In all, 48.6% of responding centers had received inquiries from such LKDs, whereas 44.3% were currently evaluating. A total of 98 donors were in the evaluation phase, whereas 27.8% centers had approved 42 such donors to proceed with donation. A total of 50.8% of participants preferred to wait >3 months, and 91% would wait at least 1 month from onset of infection to LD surgery. The most common reason to exclude LDs was evidence of COVID-19-related AKI (59.8%) even if resolved, followed by COVID-19-related pneumonia (28.7%) and hospitalization (21.3%). The most common concern in accepting such donors was kidney health postdonation (59.2%), followed by risk of transmission to the recipient (55.7%), donor perioperative pulmonary risk (41.4%), and donor pulmonary risk in the future (29.9%). CONCLUSION: Practice patterns for acceptance of COVID-19-recovered LKDs showed considerable variability. Ongoing research and consensus building are needed to guide optimal practices to ensure safety of accepting such donors. Long-term close follow-up of such donors is warranted.

Visitation policies at NCI-designated comprehensive cancer centers during the COVID-19 pandemic.

PURPOSE: Family/caregiver visitation provides critical support for patients confronting cancer and is associated with positive outcomes. However, the COVID-19 pandemic brought historic disruptions including widespread visitation restrictions. Here, we characterize in-depth the visitor policies of NCI-designated comprehensive cancer centers (CCCs) and analyze geographic/temporal patterns across CCCs. METHODS: The public-facing CCC websites, including archived webpages, were reviewed to abstract initial visitation policies and revisions, including end-of-life (EoL) exceptions and timing of visitation restrictions relative to regional lockdowns. Chi-squared and Fisher's exact tests were employed to analyze associations between geographic region, timing, and severity of restrictions. RESULTS: Most CCCs (n=43, 86%) enacted visitation restrictions between March 15 and April 15, 2020. About half barred all visitors for COVID-negative inpatients (n=24, 48%) or outpatients (n=26, 52%). Most (n=36, 72%) prohibited visitors for patients with confirmed/suspected COVID-19. Most (n=40, 80%) published EoL exceptions but the specifics were highly variable. The median time from initial restrictions to government-mandated lockdowns was 1 day, with a wide range (25 days before to 26 days after). There was no association between timing of initial restrictions and geographic location (p=0.14) or severity of inpatient policies (p=1.0), even among centers in the same city. Outpatient policies published reactively (after lockdown) were more restrictive than those published proactively (p=0.04). CONCLUSION: CCCs enacted strict but strikingly variable COVID-19 visitation restrictions, with important implications for patients/families seeking cancer care. A unified, evidence-based approach to visitation policies is needed to balance proven infection control measures with the needs of patients and families.

Healthcare Disparities and the COVID-19 Pandemic: Analysis of Primary Language and Translations of Visitor Policies at NCI-Designated Comprehensive Cancer Centers.

CONTEXT: Coronavirus Disease 2019 (COVID-19) has caused unprecedented disruptions to cancer care, including through strict hospital visitation policies. Since a substantial proportion of the U.S. population report a non-English language as their primary language, it is critical that information is disseminated in multiple languages. OBJECTIVES: To examine the availability of language translations of visitation restrictions on adult National Cancer Institute-designated comprehensive cancer centers (CCCs) Web sites. METHODS: Cross-sectional analysis of visitation policies abstracted from public-facing Web sites of CCCs in June 2020. Using U.S. Census data, CCC's city and state proportions of self-identifying Hispanic/Latinx population were categorized into three cohorts: low (<10%), moderate (10%-20%), and high (>20%). RESULTS: As of June 2020, all 50 CCCs published a COVID-19 visitation policy on their Web site. Of these, 33 (66%) posted policies only in English, whereas 17 (34%) included one or more non-English translations. A minority of CCCs published Spanish language resources, which did not differ based on state or city demographics: for example, only 42% (8 of 19), 10% (1 of 10), and 38% (8 of 21) of CCCs published Spanish language resources in cities with low, moderate, and high Hispanic/Latinx populations, respectively. CONCLUSION: `Most CCC's did not publish non-English language translations of their visitor policies. Even in cities and states with larger Hispanic/Latinx populations, most CCCs did not publish resources in Spanish. This study highlights a key opportunity to mitigate communication barriers and deliver culturally competent, patient-centered care.

Increasing Nephrologist Awareness of Symptom Burden in Older Hospitalized End-Stage Renal Disease Patients.

BACKGROUND: End-stage renal disease (ESRD) patients have significant symptom burden. Reduced provider awareness of symptoms contributes to underutilization of symptom management resources. METHOD: We hypothesized that improved nephrologist awareness of symptoms leads to symptom improvement. In this prospective, multicenter interventional study, 53 (age >65) ESRD inpatients underwent symptom assessment using the modified Edmonton Symptom Assessment System (ESAS) at admission and 1-week post-discharge. Physicians caring for the enrollees were asked if they felt their patients would die within the year, and then sequentially randomized to receive the results of the baseline survey (group 1) or to not receive the results (group 2). RESULTS: Fifty-two patients completed the study; 1 died. Baseline characteristics were compared. For 70% of the total cohort, physicians reported that they would not be surprised if their patient died within a year. There was no difference in baseline scores of the patients between the 2 physician groups. Severity ratings were compared between in-hospital and post discharge scores and between physicians who received the results versus those that did not. Total ESAS scores improved more in group 1 (12.9) than in group 2 (9.2; p = 0.04). Among individual symptoms, there was greater improvement in pain control (p = 0.02), and nominal improvement in itching (p = 0.03) in group 1 as compared to group 2. There were 3 palliative care consults. CONCLUSIONS: Our findings reinforce the high symptom burden prevalent in older ESRD patients. The improvement in total scores, and individual symptoms of pain and itching in group 1 indicates better symptom control when physician awareness is increased. Residual symptoms post hospitalization and low utilization of palliative care resources are suggestive of a missed opportunity by nephrologists to address the high symptom burden at the inpatient encounter, which is selective for sick patients and/or indication of inadequacy of dialysis to control these symptoms.

Ibuprofen Overuse Leading to Life-threatening Hypokalemia Associated with Renal Tubular Acidosis in Two Patients.

Ibuprofen is a commonly used medication in the United States and is used both by prescription and over the counter, while hypokalemia is a life-threatening condition caused by various etiologies, one of which is the side effect of medications. Ibuprofen is well-known for its various nephrotoxic side effects, including hyperkalemia as a common electrolyte abnormality, however, renal tubular acidosis leading to hypokalemia with the use of ibuprofen has been reported rarely. We present here two cases of life-threatening hypokalemia due to over-the-counter use of large doses of ibuprofen and describe its management.

Knowledge, attitudes and practices survey on organ donation among a selected adult population of Pakistan.

BACKGROUND: To determine the knowledge, attitudes and practices regarding organ donation in a selected adult population in Pakistan. METHODS: Convenience sampling was used to generate a sample of 440; 408 interviews were successfully completed and used for analysis. Data collection was carried out via a face to face interview based on a pre-tested questionnaire in selected public areas of Karachi, Pakistan. Data was analyzed using SPSS v.15 and associations were tested using the Pearson's Chi square test. Multiple logistic regression was used to find independent predictors of knowledge status and motivation of organ donation. RESULTS: Knowledge about organ donation was significantly associated with education (p = 0.000) and socioeconomic status (p = 0.038). 70/198 (35.3%) people expressed a high motivation to donate. Allowance of organ donation in religion was significantly associated with the motivation to donate (p = 0.000). Multiple logistic regression analysis revealed that higher level of education and higher socioeconomic status were significant (p < 0.05) independent predictors of knowledge status of organ donation. For motivation, multiple logistic regression revealed that higher socioeconomic status, adequate knowledge score and belief that organ donation is allowed in religion were significant (p < 0.05) independent predictors. Television emerged as the major source of information. Only 3.5% had themselves donated an organ; with only one person being an actual kidney donor. CONCLUSION: Better knowledge may ultimately translate into the act of donation. Effective measures should be taken to educate people with relevant information with the involvement of media, doctors and religious scholars.