The Experience of Black Patients With Serious Illness in the United States: A Scoping Review.

CONTEXT: Black patients experience health disparities in access and quality of care. OBJECTIVE: To identify and characterize the literature on the experiences of Black patients with serious illness across multiple domains - physical, spiritual, emotional, cultural, and healthcare utilization. METHODS: We conducted a scoping review of US literature from the last ten years using the PRISMA-ScR framework. PubMed was used to conduct a comprehensive search, followed by recursive citation searches in Scopus. Two reviewers screened the resulting citations to determine eligibility for inclusion and extracted data, including study methods and sample populations. The included articles were categorized by topic and then further organized using the Social-Ecological Model. RESULTS: From an initial review of 433 articles, a final sample of 160 were included in the scoping review. The majority of articles used quantitative research methods and were published in the last four years. Articles were categorized into 20 topics, ranging from Access to Hospice and Utilization (42 articles) to Community Outreach and Services (three articles). Three-quarters (76.3%) of the included studies provided evidence that racial disparities exist in serious illness care, while less than one-quarter examined causes of disparities. The most common Model levels were the Health Care System (102 articles) and Individual (71 articles) levels. CONCLUSION: More articles focused on establishing evidence of disparities between Black and White patients than on understanding their root causes. Further investigation is warranted to understand how factors at the patient, provider, health system, and society levels interact to remediate disparities.

Perceptions of Palliative Care Program Viability During the Pandemic: Qualitative Results From a National Survey.

Background: Palliative care programs have played a significant role during the COVID-19 pandemic. However, the financial impact of the pandemic and operational challenges for palliative care programs have raised concerns for their future viability. Objectives: To explore palliative care program leaders' perceptions of the future viability of their programs in the context of the pandemic and inform future educational and program development. Methods: Surveys were sent to 1430 specialist palliative care program leaders, identified through the Center to Advance Palliative Care's contact lists, via email in May 2020 and January 2021. Leaders were asked why they were or were not concerned about the viability of their palliative care programs. Qualitative content analysis was applied to determine themes. Results: We received 440 responses. Most programs served hospital settings and were geographically located across all US regions. We identified four themes: 1) The importance of being valued by organizational leadership and peers, 2) The importance of adequate and supported palliative care staff, 3) The pandemic validated and accelerated the need for palliative care, and 4) The pandemic perpetuated organizational financial concerns. Conclusion: Findings provide insights about palliative care program viability from the perspective of program leaders during a global pandemic. Technical assistance to support palliative care teams and their relationships with stakeholders, methods to measure the impact of peer support, efforts to educate administrators about the value of palliative care, and efforts to reduce burnout are needed to sustain palliative care programs into the future.

Palliative Care Team Perceptions of Standardized Palliative Care Referral Criteria Implementation in Hospital Settings.

Background: Standardized referral criteria can aid in identifying patients who would benefit from palliative care consultation. Little is known, however, on palliative care team members' perceptions of these criteria. Objective: Describe palliative care programs' reasons for referral criteria implementation and their perception of the benefits or disadvantages of its use. Design: Online survey of National Palliative Care Registry™ participants who use standardized referral criteria. Results: Fifty-three programs participated. Late referrals (64.2%) were the most commonly cited reason for referral criteria implementation. The majority (77.4%) felt that referral criteria lead to positive outcomes, including earlier referrals for palliative care-appropriate patients (71.7%). Increases in staff workload and inappropriate referrals were identified as disadvantages of referral criteria use.* Conclusion: Palliative care program members identified both benefits and disadvantages of referral criteria use, but felt they had mostly productive results. *Correction added on March 18, 2021 after first online publication of December 18, 2020: In the Results section of the abstract, the third sentence was changed from "Increases in clinical volume and inappropriate referrals were identified as disadvantages of referral criteria use." to "Increases in staff workload and inappropriate referrals were identified as disadvantages of referral criteria use."

The National Palliative Care Registry: A Decade of Supporting Growth and Sustainability of Palliative Care Programs.

Background: Palliative care program service delivery is variable, and programs often lack data to support and guide program development and growth. Objective: To review the development and key features of the National Palliative Care Registry™ ("the Registry") and describe recent findings from its surveys on hospital palliative care. Description: Established in 2008, the Registry data elements align with National Consensus Project (NCP) guidelines related to palliative care program structures and operations. The Registry provides longitudinal and comparative data that palliative care programs can use to support programmatic growth. Results: As of 2018, >1000 hospitals and 120 community sites have submitted data on their palliative care programs to the Registry. Over the past decade, the percentage of hospital admissions seen by palliative care teams (penetration) has increased from 2.5% to 5.3%. Higher penetration is correlated with teaching hospital status, having a palliative care trigger, and hospital size (p < 0.05). Although overall staffing has expanded, only 42% of Registry programs include the recommended four key disciplines: physician, advanced practice or other registered nurse, social worker, and chaplain. Compliance with NCP guidelines on key structures and processes vary across adult and pediatric programs. Conclusions: The Registry allows palliative care programs to optimize core structures and processes and understand their performance relative to their peers.