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Palliative and end-of-life care has been pushed to the forefront of medical care during the pandemic caused by the coronavirus-2019 (COVID-19). Palliative care organizations have responded to the growing demand for the rapid dissemination of research, clinical guidance, and instructions for care to clinicians, patients with COVID-19, and their caregivers by creating COVID-19 resource Web pages. Here, end users can access resources that can be updated in real time. These Web pages, however, can be variable in what resources they offer and for whom they are designed for (clinicians, patients, caregivers). Therefore, this project was conducted to consolidate these resources via summary tables of specific contents available through each Web page grouped by palliative care domains (eg, care discussion and planning, communication, symptom management, care access) and to identify the target audience. This environmental scan was conducted by compiling a comprehensive list of COVID-19 resource Web pages of palliative care organizations generated by reviewing previously published research studies and consulting with palliative care research experts. Snowballing techniques were used to identify resource Web pages not captured in the initial scan. Two reviewers independently evaluated eligible Web pages for content via a form developed for the study, and Cohen κ statistic was calculated to ensure interrater reliability. The final κ statistic was 0.76. Of the 24 websites screened, 15 websites met our eligibility criteria. Among the eligible resource Web pages, most (n = 12, 80%) had specific target audiences and care settings, whereas the rest presented information targeted to all audiences. Although 11 Web pages offered resources that addressed all 4 domains, only 1 Web page conveyed all 12 subdomains. We recommend the use of this guide to all frontline clinicians who require guidance in clinically managing patients with COVID-19 receiving palliative care and/or end-of-life care.

Background: Physician Orders for Life-Sustaining Treatments (POLST) is an advance care planning (ACP) tool that is designed to facilitate End-of-Life (EoL) care discussions between a medical provider and a terminally ill patient. It is often used as a tool to translate care wishes into a medical order, which can be honored across healthcare settings. With an increased utilization of the POLST paradigm in various healthcare settings along with continued dissemination across the nation, it is critical to examine whether documented wishes on POLST are concordant with subsequent care delivered. Purpose of this article was to examine concordance rate between POLST and subsequent care delivered in any care settings and communities. Design: Systematic review. Results: Of 1,406 articles identified, 10 articles met inclusion criteria. Together, included studies represent 5,688 POLST forms reviewed from individuals residing in a total of 126 nursing care facilities, 9 elderly care centers, 4 community settings, and 2 hospitals. Preference for cardiopulmonary resuscitation and actual delivery/ withholding of resuscitation was the most observed intervention in study of concordance (n = 8). It is also where highest concordance rate (97.5%) was reported. Seven studies compared care provided during EoL and the level of medical intervention requested on POLST forms (91.17% concordance). Preference to use artificial nutrition/ hydration, and actual delivery was 93.0% (n = 4 studies), and antibiotics use preference and delivery was 96.5% (reported in 4 studies). Conclusion: Published literature evidence suggests that EoL care wishes documented on POLST forms were largely concordant with subsequent care delivered. Additional research is needed to evaluate concordance between POLST documentation and care received among POLST users, who experienced multiple care transitions across healthcare settings, or across state during EoL care journey.

Objective: Knowledge of one’s gene status for adult onset conditions provides opportunity to make advance end-of-life (EOL) plans. The purposes of these analyses were to (1) determine the prevalence of EOL plans, including advance directives (ADs) among persons across 3 stages of Huntington disease (HD) and (2) examine factors associated with having ADs in this sample. Methods: Data are from 503 participants in the HD Quality of Life study. Participants completed an online health-related quality-of-life survey that included questions regarding EOL planning and self-reported HD symptoms. Frequencies were calculated for EOL planning by the HD stage. Bivariate analysis and logistic regression were used to identify variables associated with having ADs. Results: A total of 38.2% of participants stated they had ADs and fewer than half had other EOL plans. Being older, increased HD stage, more years of education, lower anxiety, more swallowing symptoms, and higher meaning and purpose were associated with having ADs. Conclusion: The prevalence of ADs in our sample is comparable to the general US population, but surprisingly low, considering the severity and long disease course of HD. Practice Implications: Health-care providers should develop specific interventions early in the disease process to increase ADs in this population.