Abstract
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.
Keywords: growth, hospital palliative care, national guidelines, pediatric palliative care, program development, staffing
Background
Over the past decade, palliative care has become one of medicine's fastest growing specialties and an established high-value innovation.1 The number of hospitals (with 50 or more beds) with a palliative care team has increased, from one-quarter of hospitals reporting palliative care in 2000 to three-quarters reporting in 2016.2 Although the core principles of palliative care are well established—manage pain and symptoms, support caregivers and family, and respect the patient's goals for their care—how programs operationalize these principles may differ. The National Consensus Project's (NCP) Clinical Practice Guidelines for Quality Palliative Care provides recommendations on best practices for palliative care program structures and care processes.3 The Joint Commission and DNV GL have incorporated these recommendations into their specialty palliative care program certification standards.4,5 Despite the presence of these guidelines, notable variability in palliative care service delivery exists.6
The National Palliative Care Registry™ (referred to hereafter as “The Registry”) was established in 2008 to track the development of palliative care program characteristics and to enable comparison of programmatic structures and processes. In this article, we review the formation and central features of the Registry and describe how it has been used to support palliative care program development, sustainability, and growth.
The National Palliative Care Registry
Objective and scope
Developed in 2008, the Registry is a joint project of the Center to Advance Palliative Care (CAPC) and the National Palliative Care Research Center (NPCRC). The Registry was developed to identify and catalog organizational structures and care processes of hospital palliative care programs to better understand how palliative care service delivery differs across hospital structures (e.g., academic medical centers and community hospitals), sizes, and locations. An additional goal was to assist participating programs in tracking their growth over time and provide them with normative comparative data from similar (peer) programs to allow comparisons by fundamental structure and process measures. Registry participation is free.
Development
The Registry is refined annually based on feedback from participating palliative care programs, and changes in the NCP Clinical Practice Guidelines for Quality Palliative Care—initially published in 2004 and subsequently revised in 2009, 2013, and 2018. The Registry survey for hospital inpatient palliative care programs comprises 12 modules—4 of which are required, 6 of which are optional, and 2 of which are specialty modules (for inpatient palliative care units and pediatric programs). Surveys for nonhospital palliative care delivery follow the same framework with questions modified to align with the care setting being surveyed. A crosswalk of the Registry data elements and the NCP guidelines for Domain 1: Structure and Processes of Care are given in Table 1.
Table 1.
Crosswalk of the National Consensus Project Guidelines for Quality Palliative Care and the National Palliative Care Registry Data Elements
| National Consensus Project Guidelines Domain 1: Structure and Processes of Care | Relevant National Palliative Care Registry™ elements |
|---|---|
| Guideline 1.1 Interdisciplinary team: Palliative care is provided by a team of physicians, advanced practice registered nurses, physician assistants, nurses, social workers, chaplains, and others based on need | Staffing models, team member disciplines, FTEs, and head counts, detail on funded, in-kind, and volunteer positions, staff certification in palliative care, 24/7 availability, staffing levels with comparisons to peer programs |
| Guideline 1.2 Comprehensive palliative care assessment: An interdisciplinary comprehensive assessment of the patient and family forms the basis for the development of an individualized patient and family palliative care plan | Number of initial palliative care consults and follow-ups, standardized consult note, items documented in the patient's chart, timeliness of consult, age groups served, reasons for palliative care referral |
| Guideline 1.3 Palliative care plan: In collaboration with the patient and family, the IDT develops, implements, and updates the care plan to anticipate, prevent, and treat physical, psychological, social, and spiritual needs | Types of consult documentation (including surrogate decision maker), reasons for palliative care referral, number of referrals to hospice, primary diagnosis |
| Guideline 1.4 Continuity of palliative care: The IDT has defined processes to ensure access, quality, and continuity of care, especially during transitions of care | Use of a palliative care trigger or screening criteria, continuity of palliative care posthospital discharge, palliative program's relationship to hospice services (if needed), bereavement plan, integration of palliative care into the ICU and ED |
| Guideline 1.5 Care settings: Palliative care is provided in any care setting, including private residences, assisted living facilities, rehabilitation, skilled and intermediate care facilities, acute and long-term care hospitals, clinics, hospice residences, correctional facilities, and homeless shelters | Sites of care (hospital, outpatient or clinic, physician's office, long-term care facility) and program administrative home (hospital, hospice, home health agency, office, clinic, long-term care), types of palliative care visits |
| Guideline 1.6 Interdisciplinary team education: Education, training, and professional development are available to the interdisciplinary team | Palliative care certification for staff, education plan for palliative care staff, staff orientation plan, staff workload with comparisons to peer programs |
| Guideline 1.7 Coordination of care and care transitions: Care transitions are anticipated, planned, and coordinated to ensure patient goals are achieved | Discharge locations, referrals to hospice, palliative program's integration with ICU, ED, and outside hospices, continuation of palliative care after hospital discharge |
| Guideline 1.8 Emotional support to the interdisciplinary team: Providing palliative care to patients with a serious illness and their families has an emotional impact, therefore the IDT creates an environment of resilience, self-care, and mutual support | Team wellness policies, staff workload with comparisons to peer programs |
| Guideline 1.9 Continuous quality improvement: In its commitment to CQI, the IDT develops, implements, and maintains a data-driven process focused on patient- and family-centered outcomes using established quality improvement methodologies | Quality improvement plan, documentation in the EHR, patient and family satisfaction surveys |
| Guideline 1.10 Stability, sustainability, and growth: Recognizing limitations in reimbursement for interdisciplinary palliative care, the IDT endeavors to secure funding for long-term sustainability and growth | Funding sources for palliative care program, funded staffing disciplines, participation in alternative payments and ACOs, strategic business plan, multi-year budget plan, marketing plan |
ACOs, accountable care organizations; CQI, continuous quality improvement; ED, emergency department; EHR, electronic health record; FTEs, full-time equivalents; ICU, intensive care unit; IDT, interdisciplinary team.
Data acquisition and reporting
The Registry opens for data submission on January 1 of each year and closes on June 30 of that same year. Although programs may enter and edit either their current submission or historical data at any time during the year, data entered after June 30 are not included in the publication of Registry annual findings (summer of each year). Programs report data in aggregate for the preceding calendar year (January 1–December 31) or fiscal year of the previous year. Although the survey requires manual data entry, validation checks within the survey alert participants and Registry staff to any potential reporting errors.
Hospital palliative care programs can download their own program's data, and summary reports from the Registry at any time. Reports include data visualizations and tables, key definitions, numerators and denominators, and sample sizes. Reports comprised the following: (1) longitudinal reports on an individual program over time, (2) longitudinal reports on an individual program in comparison to peer programs over time, and (3) single year comparative reports on an individual program in comparison with peer programs. Peer groups are defined by hospital size, proportion of annual admissions seen (penetration), or palliative care program staffing full-time equivalents (FTEs) per 10,000 admissions. Adult and pediatric palliative care programs are compared separately. Because of the smaller number of participating community palliative care programs, peer comparisons are limited. Key findings are published annually and distributed through the Registry website (registry.capc.org), CAPC webinars, annual meeting presentations, and through social media. Table 2 provides key metrics reported from the Registry and Exhibit 1 presents a case study of how a hospital-based palliative care program successfully used Registry data.
Table 2.
Key Metrics from the National Palliative Care Registry
| Key Registry metric | Description | Purpose and impact |
|---|---|---|
| Palliative care service penetration | The percentage of annual hospital admissionsa seen by the palliative care team | Penetration is a measure of the palliative care team's reach into a hospital to assess how well a palliative care team is reaching patients in need |
| Billable workload | The number of initial palliative care consults completed per one FTE of a billable provider (physician, advanced practice registered nurse, physician's assistant) | This ratio of consults to staffing volume can help palliative care programs understand how their estimated workload (productivity) compares with similar programs |
| Staffing FTE per 10,000 hospital admission | The number of palliative care staffing FTEs standardized to 10,000 annual hospital admissionsa | Standardizing hospital admissions allows for comparisons of staffing levels across hospitals of different sizes. Comparisons on staffing can provide programs with actionable data to support additional resources |
Admissions data are compared with the American Hospital Association Annual Survey Database™ to ensure accuracy and validity of self-reported numbers.
Analyses of registry data
Since inception, >1000 hospitals and 120 community sites have submitted at least one year of data on their palliative care program to the Registry. A mean of 400 inpatient palliative care programs participate annually, representing ∼20% of hospitals reporting palliative care teams in the United States.2 Participating programs represent hospitals of all sizes, tax status, and geographic locations.
The analyses presented in this article are limited to hospital palliative care programs that submitted at least one year of data to the Registry, with an emphasis on the 365 adult programs and 31 pediatric programs that submitted data on 2017 (collected in 2018). The results presented highlight the findings of the Registry's key metrics on program staffing, penetration, and the participating programs' concordance with the guidelines from the NCP. Unless explicitly stated, findings are limited to nonpediatric palliative care programs because of the small sample size of participating pediatric palliative care programs over the past decade. Descriptive statistics and bivariate analyses were performed using IBM SPSS Statistics 24.
Findings
Palliative care team penetration
Registry data complement our previous reports on the prevalence of palliative care teams in U.S. hospitals by providing additional information on penetration.7–9 Penetration is defined as the percentage of annual hospital admissions who received an initial palliative care consult. From 2008 to 2017, average palliative care penetration has grown relatively linearly from 2.5% to 5.3% (a 112% increase) (Fig. 1).
FIG. 1.
The growth of palliative care penetration, 2008–2017 (adult palliative care programs).
Specific hospital characteristics seem to be associated with higher palliative care penetration rates. Programs in smaller hospitals (150 or fewer beds) care for a significantly higher percentage of annual hospital admissions compared with programs at hospitals with 300+ beds (6.7% vs. 4.7%, p < 0.001). Palliative care programs in nonteaching hospitals also care for a significantly higher percentage of admissions (5.9% SD 3.6) compared with teaching hospitals (5.9% vs. 4.9%, p = 0.003). The use of formal screening criteria/palliative care triggers was also associated with higher penetration (6.0% for those employing triggers vs. 5.0% for those not implementing triggers, p = 0.013). Finally, teams with higher staffing ratios had higher penetration rates. Standardized to 10,000 annual admissions, penetration increased linearly from 3.4% in the lowest staffing quartile (<1.5 total FTE per 10,000 patients admitted) to 6.7% in the highest staffing quartile (3.0 or more FTE per 10,000 patients admitted; p < 0.001) (Fig. 2).
FIG. 2.
Palliative care service penetration by interdisciplinary team per 10,000 hospital admissions, 2017 (adult palliative care programs). FTE, full-time equivalent.
Palliative care team composition
The NCP guidelines and the palliative care program certifications call for palliative care teams to be interdisciplinary with a minimum of medicine, nursing, social work, and chaplaincy represented. Most inpatient palliative care programs submitting data to the Registry do not meet recommended staffing. In 2017, only 42% of Registry programs reported representation of all four key disciplines. Figure 3 provides changes in staffing composition for hospitals of three different sizes between 2008 and 2017. Changes in team composition and growth are most evident in the larger hospitals, which nearly doubled overall interdisciplinary FTE and increased FTE in almost all core disciplines from 2008 to 2017. Conversely, there was no growth in the size of the interdisciplinary team in small hospitals with <50 beds.
FIG. 3.
Changes in palliative care team composition by hospital size, 2008–2017 (adult palliative care programs).
Concordance with the NCP guidelines
The NCP guidelines detail several structures and processes that should be standard components of palliative care teams. Table 3 provides NCP-recommended structures or processes of care and their prevalence within Registry participants for adult and pediatric palliative care programs. Compliance for adult programs ranged from >80% for a physician on the team, a palliative medicine-certified clinician and a relationship with hospice to <50% for 24/7 availability, team wellness plan, and bereavement plan. In pediatric programs >80% reported 24/7 availability, a staff education plan, a palliative medicine-certified clinician, a physician on the team, and an established relationship with hospice. No pediatric measures fell below the 50% compliance level.
Table 3.
Meeting National Guidelines for Quality Palliative Care, 2017
| National palliative care guideline | Adult programs reporting, % (n) | Pediatric programs reporting, % (n) |
|---|---|---|
| 24/7 Availability | 38.7 (135/349) | 81.5 (22/27) |
| Team wellness plan | 46.7 (163/349) | 61.5 (16/26) |
| Bereavement plan | 48.7 (148/304) | 79.2 (19/24) |
| Quality improvement plan | 71.4 (217/304) | 54.2 (13/24) |
| Staff education plan | 74.0 (225/304) | 87.5 (21/24) |
| Physician on team | 83.6 (290/347) | 100.0 (27/27) |
| Social worker on team | 67.7 (235/347) | 63.0 (17/27) |
| Chaplain on team | 55.6 (193/347) | 59.3 (16/27) |
Conclusion
National comparative data provided by the National Palliative Care Registry allows programs to optimize their core structures and processes better and understand their performance relative to their peers. Furthermore, although admittedly a biased sample, registry data provide evidence on how to increase access to palliative care services for patients living with serious illness. Data from the Registry also provide insights on how the field has evolved over the past decade and illustrates opportunities for further development—particularly ensuring the presence of fully staffed interdisciplinary teams, 24/7 availability, and team wellness programs.
Registry findings must be interpreted cautiously. Registry participation is voluntary, data are self-reported, and the 365 hospitals that submitted data are not representative of the 1700 hospitals reporting palliative care teams in the United States. Efforts to improve participation in the Registry and the reliability, validity, and completion of registry data have included shortening the survey length, removing questions requiring detailed chart review, improving ease of data entry, creating distinct data modules, and narrowing the scope of questions to easily reportable program structure and process metrics.
Drawn from national best practices in palliative care, as articulated in the NCP guidelines for Quality Palliative Care, the Registry was created in response to the need for actionable data to support the development, scale, and quality of palliative care teams. The Registry, through longitudinal and comparative reporting, helps programs build the case for increased resources and capacity to deliver high-quality care to more patients and families. Participation in the National Palliative Care Registry can help palliative care teams deliver standardized and high-impact care and further expand access to those most in need.
Exhibit 1: St. Mary Medical Center case study
St. Mary Medical Center is a 367-bed Catholic-affiliated hospital in Langhorne, Pennsylvania with an established inpatient palliative care consultation service. The palliative care team was successful in meeting and exceeding its palliative care metrics for clinical, operational, financial, and patient satisfaction that were set for all palliative care programs across the health system. Stakeholders, including hospital leadership and physician staff, asked the palliative care team to begin to identify and serve patients earlier in their disease trajectory, particularly for patients at high risk for readmission. Although this was an indication of the success of the service, the palliative care team felt overwhelmed with their caseload and was at risk for burnout.
St. Mary Medical Center palliative care program model
Availability: Monday–Friday inpatient consultation service.
Staffing: 0.8 physician, 0.9 registered nurse, 0.9 social worker, and 1.0 program coordinator.
Patient volume: 5.0% palliative care service penetration and 1200 initial palliative care consults annually.
Estimated billable workload: 1500 annual initial consults per one FTE of billable provider (physician, advanced practice registered nurse, or physician assistant).
Employing data from the Registry, St. Mary's palliative care program was able to compare their programmatic metrics to national peers. Their Registry reports demonstrated that they were at the 75th percentile for penetration compared with palliative care programs with a similar staff size and below the 25th percentile for palliative care staffing (staff FTE per 10,000 patients seen), compared with palliative care programs at similarly sized hospitals.
The team developed an Executive Summary staffing proposal using a literature review detailing the potential impact of expanding the palliative care service, both clinically and financially and supplemented with data and reports from the Registry. These comparative data contributed to hospital approval of an additional 1.0 FTE advanced practice registered nurse and a 0.2 registered nurse to support desired programmatic expansion. Increased staffing allowed the palliative care team to pilot screening tools to systematically identify patients earlier in their disease trajectory and hospitalization, in turn, addressing the needs of patients, physicians, and leadership, and decreasing risk of palliative care team burnout.
Acknowledgment
This work was supported by the Gordon and Betty Moore Foundation and by the Claude D. Pepper Older American Independence Centers (OAICS) of the National Institutes of Health under award number P30AG028741. The authors acknowledge all the foundations who generously supported the development and growth of the Registry over the past decade.
Author Disclosure Statement
No competing financial interests exist.
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