Abstract
Background:
Although clinic-based palliative care (PC) services have spread in the United States, little is known about how they function, and no studies have examined clinics that predominantly serve safety net populations.
Objectives:
To describe the PC clinics operating in safety net institutions in California.
Design:
Survey completed by PC program leaders
Setting/Subjects:
PC programs in California, USA, safety net medical centers.
Measurements:
Descriptive statistics regarding staffing, clinic processes, patients served, and finances.
Results:
Twelve of 15 programs responded; 10 clinics that met inclusion criteria. All 10 programs use multiple disciplines to deliver care. Average full-time equivalent (FTE) used to staff an average of 2.75 half-day clinics per week includes 0.69 physician FTE, 0.51 nurse practitioner FTE, 1.37 nurse FTE, 0.79 social worker FTE, and 0.52 chaplain FTE. Clinic session schedules include an average of 1.88 new patient appointment slots (standard deviation [SD] = 0.44) and four follow-up appointment slots (SD = 1.95). The nine programs that reported on clinic volumes see 1081 patients annually combined, with an annual average of 120 (SD = 48.53) per program. Encounters per patient averaged 3.04 (SD = 1.59; eight programs reporting). All reported offering seven core PC services: pain/symptom management, comprehensive assessment, care coordination, advance care planning, PC plan of care, emotional support, and social service referrals. An average of 77.4% (SD = 26.81) of clinic financing came from the health systems.
Conclusions:
Our respondents report using an interdisciplinary team approach to deliver guideline-concordant specialty PC. More research is needed to understand the most effective and efficient staffing models for meeting the PC needs of the safety net population.
Introduction
Although outpatient specialty palliative care (PC) services have spread in the United States, detailed information about their current state is limited.1–5 Little is known about how these clinics function, including how they are staffed, which patients are being served, and which clinical services are being offered. 6 Although some of this information will likely emerge from the Center to Advance PC's National Registry, and a few studies have been done in this area, current descriptive data are limited, and no available sources have explored this issue in safety net populations or health systems.1,3–5,7 “Safety net” populations generally consist of patients insured by Medicaid and those with limited or no medical insurance, and health systems that serve these populations have a mission or government mandate, or both, to care for patients regardless of their ability to pay.
Based on a survey of California safety net medical centers, we report on the staffing, patients, services, and current capacity in clinic-based PC. While such descriptive information is not available for comparator safety net institutions in other states, this California data may be of use nationally as public institutions seek to match PC needs with service capacity. California Senate Bill 1004 (SB 1004) is a 2018 California law requiring Medicaid-managed care plans to make PC available to eligible Medicaid patients. Our survey sought to assess the possible impacts of SB 1004 on PC clinics housed in systems that serve large numbers of Medicaid patients.
Methods
A survey was developed by two study authors (M.W.R., K.K.) to assess specialty PC clinics among California safety net medical centers. Survey topics included clinic availability, clinic staffing, scope of services offered, clinic financing, patient characteristics, and respondents' impression of the extent to which SB 1004 had influenced clinic development or expansion. Survey questions asked for quantitative responses primarily, with some narrative responses regarding staffing.
Participation in the survey was solicited from the 15 public hospital safety net medical centers participating in the two-year “California Public Hospital Community-based Palliative Care Learning Community Project” (2018–2019), funded by the California Health Care Foundation. Learning Community activities included webinars, technical assistance, and two in-person conferences to support the expansion of community-based PC among California's public medical centers. Programs were excluded from participating in the survey if their clinic had been in operation for less than one year or was held less than one-half day weekly.
The survey was sent to clinic directors through e-mail in May 2018, with the request that the clinic director complete the survey, assisted as needed by other members of the PC program or medical center. Clinic directors were assured that responses would be presented in aggregate and that data would not be attributed to individual programs. Two e-mail reminders were sent to nonresponders, and as needed the study team followed up by e-mail regarding missing or ambiguous responses. Responses were entered into an Excel spreadsheet, which was used to generate descriptive statistics for the quantitative data. Narrative data was collated and summarized by one author (K.K.) and subsequently reviewed and confirmed by two other authors (M.W.R., M.P.). IRB approval was waived given that no patient-level data were collected.
Results
Respondents
Twelve of 15 (80%) programs responded. Two were excluded (one program had not been operational for a full year and one did not operate a clinic), whereas 10 (66.7%) met inclusion criteria and were included in the analysis (Table 1). All programs are part of their respective county health care systems. Three programs are also affiliated with academic health systems operated by the University of California and two with a private, large academic medical center. Three of the 10 clinics operate as part of a comprehensive cancer center. All 10 programs operate inpatient PC consultation services in addition to PC clinics.
List of Participating Programs
Affiliated with a University of California or a private academic medical center.
Age of clinics
Clinics had been in operation for an average of three years (range 1–10 years, standard deviation [SD] = 2.75). Eight had been operational for three or fewer years; one clinic had been operating for five years, and one for 10 years.
Appointment structure and availability
Service availability was measured as half-day sessions. Clinics average 2.75 half-day sessions per week (SD = 1.44, range 1–5), for a total capacity across all 10 programs of 27.5 half-days per week. Six of the 10 programs operate clinics that are embedded in other specialty practice clinics (e.g., oncology clinics), sharing clinic space and, depending on the arrangement, support staff and scheduling infrastructure. Seven of the programs operate stand-alone clinics that function independently, assuming responsibility for all clinic operations. Three of the programs operate only embedded clinics, four operate only stand-alone clinics, and three offer a mix of embedded and stand-alone clinics. Eight of 10 programs were able to report on the distribution of new patient and follow-up appointment slots in their routine clinic schedule. Among these programs, the clinic session templates include an average of 1.88 new patient appointment slots (SD = 0.44) and an average of four follow-up appointments slots (SD = 1.95). Five programs have “urgent slots” available (appointment times held open to accommodate new or established patients with urgent needs.) The average total number of urgent slots available per week is 0.5 (SD = 0.53).
Staffing
All programs use multiple disciplines to deliver clinic-based PC services (Table 2). All clinics use physicians, most use social workers or licensed clinical social workers (80%), nurse practitioners (60%), and registered nurses (60%). Half use chaplains. The average full-time equivalent (FTE) staffing (used to cover an average of 2.75 half-day clinics per week) includes 0.69 physician FTE, 0.51 nurse practitioner FTE, 1.37 nurse (registered nurse or licensed vocational nurse) FTE, 0.79 social worker (social worker or licensed clinical social worker) FTE, and 0.52 chaplain FTE.
Statewide Safety Net Palliative Care Clinic Staffing Characteristics by Discipline
When asked which discipline they would most like to add to their teams, program leaders cited chaplaincy/spiritual care most commonly (3 of 10 respondents). Only two respondents referenced adding providers that could generate professional fee revenue (one nurse practitioner and one psychologist); all other respondents identified nonbilling providers, including case managers, chaplains, navigators/community health workers, social workers, and registered nurses. Half of all respondents indicated they needed more social worker staffing.
Variables impacting amount and type of staffing
Among the 10 programs, only one maintained staff that were dedicated exclusively to the outpatient setting. For all others, some or all staff worked in both the inpatient and clinic settings. There was variation in who held decision-making authority over disciplines on the PC team, and the amount of FTE for those roles. One team indicated that staff and staffing levels were dictated by parameters outlined in a grant, in two instances such decisions were made by the hospital/health system, in four instances PC team leaders were in charge of team composition and design, and in two instances decisions were collaboratively made by the health system and the PC team leaders.
Half of all respondents indicated that PC team staffing was influenced by ease of hiring different disciplines within their systems (e.g., a different approval process for physicians compared with nurses). Workforce shortages, complex hiring regulations, or inability for the institution to offer competitive compensation for trained individuals also played a role in team composition, with five respondents indicating they had to modify their staffing plans/preferences because of recruiting difficulties.
PC program leaders used a complex array of funding sources for their staff, often using different mechanisms for different team members. Common support mechanisms included in-kind (or shared) funding from the health system or county, funneled through medical schools or clinical departments; grants; volunteers, and philanthropy.
Patients served
The nine programs reporting clinic volumes saw 1081 patients annually combined, with an annual average of 120 (SD = 48.53) per program. Encounters per patient averaged 3.04 (SD = 1.59; eight programs reporting). Patients were followed for an average of 4.5 months (SD = 3.79; four programs reporting.) Among the six programs that track insurance status for enrolled patients, the distribution of coverage types was Medicaid 51.3% (SD = 13.36), Medicare 27.8% (SD = 11.05), other types of coverage 16.4% (SD = 13.69), and uninsured 11.8% (SD = 12.56). Among the seven programs that reported on primary diagnosis, five served cancer patients mostly or exclusively (61–100% of total clinic patient population).
Clinical services
All respondents reported that their clinics offer seven core PC services: Pain/symptom management, comprehensive assessment, care coordination, advance care planning, developing a PC plan of care, emotional support, and social service referrals. Nearly all (90%) also offer family caregiver support as well as spiritual support. Only one program offered 24/7 access to enrolled patients (Table 3).
Palliative Care Services Provided among Palliative Care Clinics (n = 10)
Comprehensive assessment includes physical, emotional, social, and spiritual needs, at minimum.
Finances
Eight of 10 programs were able to provide data describing sources of financial support for their clinics. For these eight, an average of 77.4% (SD = 26.81) of program financing came from their health systems, with four programs reporting that 100% of financial support came from the health system. Only two of the eight had <50% of program support from their medical center or health system. Four programs (50%) had funding from service development grants or philanthropy, with this type of support accounting for some 40% of the total program funding. Only two programs (25%) reported receiving any support from clinical revenues (20% or less for both programs), and no respondents had funding from research grants.
Staff wellbeing
Nine programs included activities aimed at promoting staff wellbeing. Most (77.8%) use a weekly interdisciplinary team (IDT) meeting for this purpose and six (66.7%) reported holding an annual team retreat. A minority used a variety of other activities, including resilience training, daily meditation, team outings, monthly team lunch, memorial services for deceased patients, and monthly case conferences.
SB 1004
Nine respondents offered their persepctives on how SB 1004 influenced the development or expansion of their PC clinics. Two (22.2%) reported that the legislation was “very influential”—“we added sessions or opened up to new populations because of SB1004.” Conversely, five reported SB1004 had no influence on their clinic.
Discussion
The 10 California public hospital PC clinic programs we studied are providing PC services to over 1000 patients annually, offering a combined 27.5 half-day sessions each week. On average, PC clinics in California safety net institutions offer 2.75 sessions per week, which are staffed with 1.37 nurse FTE, 0.79 social worker FTE, 0.69 physician FTE, 0.52 chaplain FTE, and 0.51 nurse practitioner FTE. Compared with an earlier study by Smith of 20 nonsafety net PC clinics nationally, 5 nonsafety net clinics generally offer more clinics/week (average 4.4 half-day clinics vs. 2.75), but are staffed with fewer providers. Looking just at physician, nurse practitioner, nurse, and social work FTE, nonsafety net clinics in the Smith study averaged 2.22 FTE, whereas safety net clinics averaged 3.36 FTE for these disciplines. The need for more FTE per patient in safety net clinics may be explained by the complexity of the patient popualtion, where a high incidence of psychosocial issues, poverty, health disparities, and language and cultural diversity, can make delivering pallative care more complex and time consuming than is the case in other settings.
Our results indicate that service delivery is tied to the particulars and governing structure of each hospital's bureaucracy. There is significant variation however in how critical programmatic decisions are made, including how the outpatient service is staffed (discipline and FTE), where staff practice (inpatient and/or outpatient), and which funds and hiring processes can be used for the program. Half the programs indicated that staff recruitment and engagement was a challenge in the face of workforce shortages or an inability to financially compete for trained staff.
All of the safety net clinics' IDTs included a physician, 80 percent included a social worker, and more than half the teams included a nurse practitioner and registered nurse. Compared with data from the Smith study, safety net PC clinics appear more likely to have a social worker on the team. Even so, safety net teams reported that they wanted to increase the social work FTE, a unsurprising finding given the complexity of the patient population.
A variety of clinic models were reported across the studied programs. Some were embedded in specialty practices (most in oncology), some were operated as stand-alone clinics, and some were a mix of the two. The data did not indicate which arrangement programs were found more advantageous. Each is likely to carry some benefits. The embedded model (where the patients typically have the disease seen in the host clinic) offers the potential for economies of scale by sharing staff (e.g., nurses, clinic coordinator, scheduler), administrative and scheduling responsibilities, space, and the possibility for warm hand-offs between the host clinic and PC. By contrast, stand-alone clinics can see patients with a range of diseases and have more independence in directing resources (staff, space, appointments) to maximize efficiencies. Because eight of the 10 programs all reported a mix of follow-up and new patient appointments, with an average of 1.88 new appointments and four follow-up appointments in their schedule templates, all the clinic arrangements seem to work. New programs choosing a clinic model should select one that works best for their environment and needs.
Despite the variation and multiplicity of funding streams across the 10 programs, use of professional billing as a source of support for program staffing was rare. There may be regulatory explanations for this, including limitations in how Federally Qualified Health Centers (FQHCs)—a designation common among public hospitals in California—can generate revenues for outpatient services. In addition, most safety net clinics have relatively few patients insured by Medicare Advantage plans or commercial health plans that offer pallative care benefits, two revenue sources that are increasingly common for nonsafety net PC programs. Eight safety net clinics reported that approximately three-quarters of their financing came from their health systems. Comparing safety net program funding to that of outpatient clinics in the survey literature, 4 it appears that safety net programs are more likely to enjoy institutional support, but less likely to be able to take advantage of both traditional (professional fee billing revenue) and emerging (Medicare Advantage) funding streams.
Most of our respondents reported that the recent (January 2018) implementation of California's SB 1004 law, which mandates access to PC for eligible patients enrolled in a managed Medicaid program, had little influence on the development or expansion of their PC clinics. The reasons for this are not clear from the data we collected, but it is possible to hypothesize. The eligibility criteria for SB 1004 are such that most qualifying patients have very advanced disease, and likely need home-based services. As a result, most of California's Medicaid-managed care plans initially contracted with organizations that offer other types of home-based care (such as hospice and home health) when assembling an SB 1004 provider network. It is possible that, in time, safety net PC clinics and Medicaid-managed care plans will collaborate more fully as a result of SB 1004, in particular in the area of identifying seriously ill patients whose disease has progressed to a point where home-based services are more appropriate than clinic-based services. The public hospital pallative care clinics are uniquely well postioned to serve as a referral hub for SB 1004, and as data indicating the value of providing PC to seriously ill Medicaid enrollees becomes available, managed care plans may see the safety net clinics as an important partner in increasing appropriate use of the SB 1004 benefit.
Staff burnout is an often overlooked area in the analysis of health care delivery. Unchecked, staff burnout can lead to reduced service quality, emotional exhaustion, feelings of ineffectiveness on the job, and staff turnover.8,9 In light of the myriad challenges public hospitals face, including financial burdens, strained resources, and staff recruitment and retention challenges, staff burnout is a critical concern. 10 In fact, nearly all of the safety net PC programs (90%) reported addressing staff wellbeing through various activities, highlighting a shared value of supporting both team and individual resiliency. Our study did not assess staff longevity, satisfaction, or turnover, although future research into these topics would be valuable.
Finally, the 10 programs reported providing services and processes that are consistent with the recommendations of the National Consensus Project's Clinical Practice Guidelines for Quality Palliative (NCP Guidelines). 11 All the teams routinely provide a comprehensive assessment and pain and symptom management; 9 of 10 routinely provide advance care planning and care coordination; 8 of 10 routinely provide emotional support and a PC-focused plan of care; and, 7 of 10 and 6 of 10, respectively routinely provide family caregiver support and social service referrals. Spiritual support, although not routinely provided, is provided on an as-needed basis by eight of the 10 programs.
This survey study has limitations. The data were collected through self-report and not confirmed by independent review. Our survey included the majority of California safety net PC programs, but not all, and key data may be missing. Among the 10 programs responding, only eight programs submitted evaluable financial data and only nine programs submitted evaluable patient demographic data. Our findings may only generalize to the state of California. Finally, outpatient PC programs are not static; they grow and shrink depending on multiple factors, such as available funds, hospital priorities, patient needs, etc. Accordingly, the presented analysis must be interpreted as a snapshot in time. The analysis did not investigate differences between newer (one to three years) versus more mature programs (more than three years). A future study analyzing these differences with respect to staffing stability, services provided, and number of patients seen may offer additional important information.
Conclusion
As the field of PC continues to develop, attention should be paid to increasing access to specialty care for safety net populations. This descriptive analysis demonstrates how California's public hospital outpatient PC programs are working to meet this need. Despite significant and ongoing challenges of providing health care in safety net systems, our respondents use an IDT approach to deliver guideline-concordent specialty PC to a significant number of complex patients. More research is needed to understand the most effective and efficient staffing models for meeting the needs of safety net population, with the goal of better supporting safety net health systems in developing rational approaches to staffing and funding their pallative care services.
Footnotes
Acknowledgments
The authors thank all the participants in the California Public Hospital Community-based PC Learning Community and the California Health Care Foundation for their ongoing support for expanding PC services in California.
Authors' Contributions
Dr. Rabow wrote significant portions of the article, helped review and integrate drafts, and helped revise it. He took overall responsibility for coordinating the design and final production of the article. Dr. Parrish wrote significant portions of the article, helped review and revise it, and coordinated article references. Dr. Kinderman, Dr. Freedman, Dr. Harris, Dr. Cox, Dr. Liao, Dr. Yu, Dr. Ward, and Dr. Landau wrote significant portions of the article, helped review it, and participated in multiple revisions. Ms. Kerr wrote significant portions of the article, helped review it, prepared the tables/figures, and participated in multiple revisions.
Funding Information
The California Public Hospital Community-based PC Learning Community was supported by grants and technical assistance from the California Health Care Foundation (#18518 and #19505). All study authors are either members of the Learning Community or paid consultants to the Learning Community.
Author Disclosure Statement
No competing financial interests exist.
