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.

Pediatric Palliative Care Programs in US Hospitals.

BACKGROUND AND OBJECTIVES: Pediatric palliative care (PPC) is integral to the care of children living with serious illnesses. Despite the growth in the number of established palliative care programs over the past decade, little is known about the current operational features of PPC programs across the country. METHODS: The National Palliative Care Registry collects annualized data on palliative care programs' structures, processes, and staffing. Using data from the 2018 registry survey, we report on the operational features of inpatient PPC programs across the United States. RESULTS: Fifty-four inpatient PPC programs submitted data about their operations. Programs reported a median of 3.8 full-time equivalent staff per 10 000 hospital admissions (range 0.7-12.1) across the core interdisciplinary team, yet few (37%) met the minimum standards of practice for staffing. Programs provided more annual consults if they were longer-standing, had more interdisciplinary full-time equivalent staff, offered 24/7 availability for patients and families, or were at larger hospitals. The majority of programs reported concern for burnout (63%) and an inability to meet clinical demand with available staffing (60%). CONCLUSIONS: There is considerable variability in PPC program operations and structure in hospitals. This study affirms the need for updated program standards and guidelines, as well as research that describes how different care delivery models impact outcomes for patients, families, staff, and health care systems. Future studies that further define the clinical demand, workload, and sustainability challenges of PPC programs are necessary to foster the provision of high-quality PPC and maintain a vital clinical workforce.

Palliative Care Specialist Access is Associated With Rankings of Hospital Quality.

CONTEXT: Increasing evidence has shown that access to specialty palliative care, particularly outpatient palliative care clinics, can yield improved health outcomes and be a marker of hospital quality. OBJECTIVE: To determine whether an association exists between access to specialty palliative care programs and hospital rankings found in the 2020-2021 U.S. News & World Report Best Hospitals. METHODS: This study used publicly available data from the Center to Advance Palliative Care (CAPC) Provider Directory to determine access to in-patient and out-patient palliative care in the 2020-2021 U.S. News & World Report Best Hospitals Rankings. Descriptive statistics and chi-squares were performed. Data were also analyzed across the four U.S. Census Bureau regions (Northeast, South, Midwest, West). RESULTS: Around 100% of the Top 20 hospitals include hospital-based palliative care consultation teams, and 95% offered outpatient palliative care. Of the second cohort of 83 hospitals, 99% offered inpatient palliative care, and 65% offered outpatient palliative care. Of the third cohort of 75 hospitals ranked, 96% had inpatient palliative care services, while only 41.3% offered outpatient palliative care. This represents a significant association between rank position and access to outpatient palliative care (P < 0.01). Ranked hospitals also have significantly higher access to hospital-based palliative care teams compared to the national prevalence rate (P < 0.01). CONCLUSION: These findings reflect the association of access to specialty palliative care with USNWR rankings for hospital quality. Further study is necessary to determine the specific influence of access to palliative care and USNWR rank position.

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."

Use of an Online Palliative Care Clinical Curriculum to Train U.S. Hospital Staff: 2015-2019.

Background: Most clinicians in the United States do not receive pre-professional education in pain and symptom management, communication skills, and caregiver support. The use of these skills by clinicians improves the quality of care for persons living with serious illness and enables the specialty-trained palliative care workforce to focus on patients whose needs are most complex. Objective: To review current trends in hospital use of the Center to Advance Palliative Care (CAPC) online clinical training curriculum. Description: Launched in 2015, CAPC clinical curriculum educates clinicians in the knowledge and skills necessary to improve care for patients with serious illness. CAPC currently offers 43 clinical courses and 4 Designations in recognition of successful completion of training by topic. Results: From January 15, 2015, to August 31, 2019, 26,535 clinicians working in hospitals completed 172,684 clinical courses. Registered nurses represented half of learners, and advanced practice providers were most likely to seek Designation. Physicians made up 22% of all learners; 85% of physician learners came from specialties beyond palliative care. Two of every five U.S. hospitals with more than 300 beds had at least one learner. In post-course evaluations, 84% reported that they will make practice changes as a result, and 70% reported that the content was new. Conclusions: The CAPC clinical curriculum is a widely used and valued method for education in clinical skills specific to the care of people living with serious illness. Findings suggest that an increasing number of hospital leaders recognize the importance of these skills in caring for patients with serious illness and support the necessary training.

Factors Associated with the Adoption and Closure of Hospital Palliative Care Programs in the United States.

Background: In the United States, the percentage of hospitals over 50 beds with palliative care programs has risen substantially from 7% of hospitals in 2001 to 72% in 2017. Yet the dynamic nature of program adoption and closure over time is not known. Objective: To examine the rate of palliative care program adoption and closure and associated hospital and geographic characteristics in a national sample of U.S. hospitals. Design: Adoption and closure rates were calculated for 3696 U.S. hospitals between 2009 and 2017. We used multivariable logistic regression models to examine the association between adoption and closure status and hospital, geographic, and community characteristics. Setting/Subjects: All nonfederal general medical and surgical, cancer, heart, and obstetric or gynecological hospitals, of all sizes, in the United States in operation in both 2009 and 2017. Results: By 2017, 34.9% (812/2327) of the hospitals without palliative care in 2009 had adopted palliative care programs, and 15.0% (205/1369) of the hospitals with programs had closed them. In multivariable models, hospitals in metropolitan areas, nonprofit and public hospitals (compared to for-profit hospitals), and those with residency training approval by the Accreditation Council for Graduate Medical Education were significantly more likely to adopt and significantly less likely to close palliative care programs during the study period. Conclusions: This study indicates that palliative care is not equitably adopted nor sustained by hospitals in the United States. Federal and state interventions may be required to ensure that high-quality care is available to our nation's sickest patients.

Hospital Characteristics Associated with Palliative Care Program Prevalence.

Background: Over the past two decades, the number of hospitals with palliative care has increased significantly. Objective: This study analyzes the availability of palliative care in U.S. hospitals and examines the variation by hospital characteristics, community-level socioeconomic demographics, health care markets, and geographic characteristics. Methods: Data were obtained from the American Hospital Association Annual Survey Database for 2017 and supplemented with 2016 for nonresponders, the United States Census Bureau's 2017 American Community Survey, the Dartmouth Atlas of Health Care's 2016 Spending and 2011 Hospital and Physician Capacity datasets, the National Palliative Care Registry™, state-level directories on palliative care, and web-based searches. Multivariable logistic regression and average marginal effects were used to examine predictors of hospital palliative care programs. Results: Seventy-two percent of hospitals with 50 or more beds had palliative care programs. Hospital and geographic characteristics were significantly associated with the presence of palliative care. Most notably, nonprofit hospitals were 24.5 percentage points more likely than for-profit hospitals to have palliative care, and metropolitan areas were 15.4 percentage points more likely than rural areas, controlling for other variables. Conclusion: This study demonstrates that availability of palliative care in U.S. hospitals is determined by where patients live and the type of hospital to which they are admitted. Equitable and reliable availability to quality palliative care must improve across the nation.

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.

Palliative Care Leadership Centers Are Key To The Diffusion Of Palliative Care Innovation.

Between 2000 and 2015 the proportion of US hospitals with more than fifty beds that had palliative care programs tripled, from 25 percent to 75 percent. The rapid adoption of this high-value program, which is voluntary and runs counter to the dominant culture in US hospitals, was catalyzed by tens of millions of dollars in philanthropic support for innovation, dissemination, and professionalization in the palliative care field. We describe the dissemination strategies of the Center to Advance Palliative Care in the context of the principles of social entrepreneurship, and we provide an in-depth look at its hallmark training initiative, Palliative Care Leadership Centers. Over 1,240 hospital palliative care teams have trained at the Leadership Centers to date, with 80 percent of them instituting palliative care services within two years. We conclude with lessons learned about the role of purposeful technical assistance in promoting the rapid diffusion of high-value health care innovation.

Associations between racial discrimination, smoking during pregnancy and low birthweight among Roma.

Background: Racial discrimination may increase the risk of low birthweight (LBW), but has not been studied among Roma, the largest minority population in Europe. Moreover, few studies test both institutional and interpersonal forms of racial discrimination on health. Our objective was to examine associations between institutional and interpersonal racial discrimination with LBW, and to test potential mediation by smoking during pregnancy. In 2012-2013, Romani women interviewers surveyed 410 Romani women in Serbia and Macedonia. We measured institutional discrimination (neighborhood segregation, legal status of housing and neighborhood socioeconomic status), interpersonal discrimination [Everyday Discrimination Scale (EDS)], birthweight and smoking by self-report or interviewer report. We estimated relative risks for discrimination on LBW and separately on smoking during pregnancy using log-binomial regression, adjusting for age, parity, years at residence and wealth. The indirect effect of high EDS via smoking on LBW was estimated using inverse odds weighting mediation. Living in a low SES neighborhood showed a 2-fold risk of LBW [adjusted risk ratio (aRR) = 2.4, 95% CI = 1.2, 5.0]; aRRs for segregation and illegal housing were weaker (aRR = 1.8, 95% CI = 0.7, 4.3; aRR = 1.3, 95% CI = 0.6, 2.6, respectively). Institutional measures were not associated with smoking. High EDS was associated with LBW (aRR = 2.4, 95% CI = 1.1, 5.2) and smoking during pregnancy (aRR = 1.4, 95% CI = 1.1, 1.8); the indirect effect of EDS on LBW via smoking was not significant. Interpersonal discrimination and living in a low SES neighborhood were associated with LBW among Roma. Interventions to improve Romani health may benefit from a human rights approach.

Few Hospital Palliative Care Programs Meet National Staffing Recommendations.

The predominant model for palliative care delivery, outside of hospice care, is the hospital-based consultative team. Although a majority of US hospitals offer palliative care services, there has been little research on the staffing of their program teams and whether those teams meet national guidelines, such as the Joint Commission's standard of including at least one physician, an advanced practice or other registered nurse, a social worker, and a chaplain. Data from the 2012-13 annual surveys of the National Palliative Care Registry indicate that only 25 percent of participating programs met that standard based on funded positions, and even when unfunded positions were included, only 39 percent of programs met the standard. Larger palliative care programs were more likely than smaller ones to include a funded physician position, while smaller programs were more reliant upon advanced practice and registered nurses. To meet current and future palliative care needs, expanded and enhanced education, as well as supportive financing mechanisms for consultations, are needed.

The Growth of Palliative Care in U.S. Hospitals: A Status Report.

BACKGROUND: Palliative care is expanding rapidly in the United States. OBJECTIVE: To examine variation in access to hospital palliative care. METHODS: Data were obtained from the American Hospital Association (AHA) Annual Surveys™ for Fiscal Years 2012 and 2013, the National Palliative Care Registry™, the Dartmouth Atlas of Healthcare, the American Census Bureau's American Community Survey (ACS), web searches, and telephone interviews of hospital administrators and program directors. Multivariable logistic regression was used to examine predictors of hospital palliative care programs. RESULTS: Sixty-seven percent of hospitals with 50 or more total facility beds reported a palliative care program. Institutional characteristics were strongly associated with the presence of a hospital palliative care program. Ninety percent of hospitals with 300 beds or more were found to have palliative care programs as compared to 56% of hospitals with fewer than 300 beds. Tax status was also a significant predictor. Not-for-profit hospitals and public hospitals were, respectively, 4.8 times and 7.1 times more likely to have a palliative care program as compared to for-profit hospitals. Palliative care penetration was highest in the New England (88% of hospitals), Pacific (77% of hospitals), and mid-Atlantic (77% of hospitals) states and lowest in the west south central (43% of hospitals) and east south central (42% of hospitals) states. CONCLUSIONS: This study demonstrates continued steady growth in the number of hospital palliative care programs in the United States, with almost universal access to services in large U.S. hospitals and academic medical centers. Nevertheless access to palliative care remains uneven and depends on accidents of geography and hospital ownership.

Impact of Staffing on Access to Palliative Care in U.S. Hospitals.

BACKGROUND: Over the past decade over two-thirds of U.S. hospitals have established palliative care programs. National data on palliative care program staffing and its association with operational outcomes are limited. OBJECTIVE: The objective of this report is to examine the impact of palliative care program staffing on access to palliative care in U.S. hospitals. METHODS: Data from the National Palliative Care Registry™ for 2014 were used to calculate staffing levels, palliative care service penetration, and time to initial palliative care consultation for 398 palliative care programs operating across 482 U.S. hospitals. RESULTS: Hospital-based palliative care programs reported an average service penetration of 4.4%. Higher staffing levels were associated with higher service penetration; higher service penetration was associated with shorter time to initial palliative care consultation. DISCUSSION: This report demonstrates that operational effectiveness, as measured by staffing and palliative care service penetration, is associated with shorter time to palliative care consultation.

Safeguarding children: the benefits of a peer-review process.

Nurses in hospitals and in the community are increasingly taking a leading role in safeguarding children. NHS London established a Safeguarding Improvement Team (SIT) in 2009. The SIT project was designed as a one-off activity to raise performance related to safeguarding children in London. This article presents a peer-review process that was established by NHS London and implemented across the 31 PCTs across London. This article presents the peer-review process methodology and a summary of the findings from the SIT visits. Feedback was requested from participants about participants' perceptions of the peer-review process immediately after the SIT visits and again, several months after the completion of all SIT visits. Findings show that the peer-review process was of value, both organisationally and professionally, and the process itself led to identification of good practice as well as gaps in existing practices. The non-threatening nature of the peer-review process was particularly valued, as was the feedback offered by the review teams.