Provider Perspectives on Implementation of Adult Community-Based Palliative Care: A Scoping Review

Abstract

While community-based palliative care (CBPC) programs have been expanding, there remain important obstacles to widespread use. Since provider perspectives on CBPC remain underexplored, we conducted a scoping review to summarize provider perspectives regarding barriers and facilitators to implementation of adult CBPC in the United States. We systematically searched OVID, MEDLINE, and CINAHL for peer-reviewed qualitative research published from January 1, 2010 to January 9, 2024, then used PRISM framework synthesis to organize themes into provider, organization, and external environment levels. Thirty-four articles were included. At the provider level, barriers included misperceptions of palliative care (PC) by referring providers and poor communication, while facilitators included multidisciplinary teams and referring provider education. At the organizational level, time constraints were barriers, while leadership buy-in and co-located clinics were facilitators. At the external environment level, limited PC workforce and inadequate reimbursement were barriers. Our findings suggest that efforts aimed at scaling CBPC must address factors at the provider, organizational, and policy levels.

Introduction

Palliative care (PC) improves quality of life and can be beneficial at all stages of serious illness (Gaertner et al., 2017; Quinn et al., 2020; Reinke et al., 2019; Yoon et al., 2018). Although services may differ between providers and contexts, PC most often includes pain and symptom management; advance care planning; and addressing of social, emotional, and spiritual needs (Chuzi et al., 2019; Hui & Bruera, 2020). While primary PC refers to any care with palliative intent practiced by a generalist provider (PCP, hospitalist), specialty PC is practiced by dedicated providers specifically trained in PC. Specialty PC may be delivered as inpatient PC or as community-based palliative care (CBPC), which is delivered in the outpatient, home, or virtual setting (Heitner et al., 2019; Kamal et al., 2013). For the purposes of our review, we focus on specialty CBPC, here on referred to as CBPC.

Compared to inpatient PC alone, CBPC can benefit both patients and health systems through earlier access to PC, improved quality of care, and reduced costs (Carpenter et al., 2017; Cassel et al., 2016; Collins et al., 2021; Fulton et al., 2019; Kaufman et al., 2021; Rabow et al., 2013; Rao et al., 2024; Temel et al., 2010). Given that the Medicare hospice benefit only applies to the last 6 months of life, along with most PC being provided through inpatient services, CBPC models address a critical need for PC at earlier stages of the serious illness continuum (Beasley et al., 2019; Ferrell et al., 2017; Kamal et al., 2013). Despite the potential benefits, unmet needs for CBPC remain high in the United States (Rosenblum et al., 2023). Implementation strategies to expand appropriate use of CBPC are needed to address systemic barriers.

Access to CBPC has increased dramatically since 2010, and as of 2019, 890 CBPC programs were identified in the United States (Heitner et al., 2019; Hui & Bruera, 2020). In 2010, U.S. health care payment strategy shifted toward value-based payment with the passage of the Affordable Care Act (ACA) (Driessen & West, 2018; Gilstrap et al., 2018). Health system participation in value-based payment models has increased incentives for high-value services such as PC (Driessen & West, 2018; Gilstrap et al., 2018). Additional drivers of CBPC expansion include increasing coverage of CBPC by integrated health systems and acceleration in telehealth infrastructure during the COVID-19 pandemic (Alcalde Castro et al., 2024; Kaufman & Grant, 2024; Lustbader et al., 2017; Milch & Brumley, 2005; Primary Care First Request for Applications, n.d.; Roiland et al., 2020; Steindal et al., 2020).

Despite this growth, barriers to scaling CBPC contribute to unmet PC needs for many patients living with a serious illness (Bischoff et al., 2023; B. A. Bowman et al., 2019; Reinke et al., 2019). Much prior work has focused on patient-centered barriers, especially the public perception of PC. Patients and families often conflate PC with end-of-life care, despite the fact that PC is often provided concurrently with curative care during a serious illness (M. S. Grant et al., 2021; Patel & Lyons, 2020). On the other hand, while several studies have investigated provider and leadership perspectives, no review has examined the extent and scope of existing literature that evaluates provider and leadership perceptions of barriers and facilitators to CBPC services. As CBPC scale-up continues across the United States, a synthesis of existing evidence on barriers and facilitators to CBPC implementation is needed to inform continued expansion. Therefore, we aimed to examine the existing literature on provider perspectives of adult CBPC expansion across the United States and provide recommendations for CBPC implementation and integration.

New Contribution

This scoping review synthesizes qualitative evidence on health provider and health system administrator perspectives about specialty CBPC implementation characteristics and barriers/facilitators to implementation in the United States after ACA, when a turn to value-based payment motivated growth in CBPC. Our intent was to emphasize the contextual factors impacting implementation of CBPC, which is underexplored in the literature. Because quantitative studies focus on evaluating effectiveness rather than complex contextual factors such as barriers and facilitators (Tong et al., 2012), we focused on qualitative studies to allow deeper exploration of provider perceptions about implementation.

This review has important applications for understanding provider and health system perceptions of barriers and facilitators to adopting and implementing specialty CBPC. Our objective is to inform health systems seeking to successfully implement CBPC. This review will also inform public payer (i.e., Veteran Health Administration [VHA], Centers for Medicare and Medicaid Services [CMS]) strategies for expanding access to PC, as there is limited synthesis of existing evidence to inform policies around CBPC adoption and implementation.

Conceptual Framework

The Practical, Robust Implementation and Sustainability Model (PRISM) was used to frame and organize data extraction and synthesis (Feldstein & Glasgow, 2008). PRISM considers four overarching contextual domains: perspectives on the intervention, characteristics of recipients, external environment, and implementation and sustainability infrastructure (Feldstein & Glasgow, 2008; McCreight et al., 2019). PRISM was chosen as the guiding implementation framework for this review to identify and categorize the contextual factors that either hinder or facilitate CBPC (Figure 1).

Figure 1.

Practical, Robust Implementation and Sustainability Model (PRISM) Framework for Community-Based Palliative Care.

PC: palliative care.

To ensure we captured evidence relevant to the post-ACA policy context, we limited our search to studies published after January 1, 2010. Inclusion criteria required a U.S. setting because our results are intended to inform U.S. PC payment and policy. Therefore, studies performed outside of the United States were excluded due to the different contextual, organizational, and payment factors impacting provision of health care services. In addition, to understand the perspective of health systems specifically, we only included studies that interviewed providers (including physicians, nurse practitioners, and physician assistants, with any scope of practice including referring providers, chaplains, and social workers) or administrators and excluded studies that interviewed patients, caregivers, or other community members. Patient perspectives about palliative and end-of-life care have been previously well studied (Green et al., 2018; McCaffrey et al., 2016; Velić et al., 2023) and were beyond the scope of this evaluation of organizational and provider perspectives on implementation of PC.

Methods

Study Design

This work is a scoping review, with a systematic and rigorous approach to evidence synthesis that aims to provide an overview of the available evidence regarding provider perspectives of facilitators and barriers to CBPC implementation (Arksey & O’Malley, 2005; M. J. Grant & Booth, 2009; Levac et al., 2010; Munn et al., 2018). It was informed by the JBI Manual (Aromataris et al., 2024) and was reported following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) 2020 statement: an updated guideline for reporting systematic reviews (Page et al., 2021) and PRISMA’s scoping review extension (Tricco et al., 2018). While our scoping review process applied systematic methods and a review protocol was prepared a priori, since the PROSPERO database states that scoping reviews should not be registered, we did not register our study protocol.

Data Sources and Search Strategy

An experienced medical librarian (LS) devised, validated, and conducted the searches in MEDLINE (via OVID) and CINAHL (EBSCOhost). Search hedges or database filters were used to remove case reports, editorials, letters, and comments, as was appropriate for each database. To ensure we captured evidence after the passage of the ACA, we limited our search to studies published after January 1, 2010. The search was conducted on March 22, 2023, and updated on January 9, 2024. Reproducible search strategies for all databases are detailed in the Supplemental Materials and can be accessed via an open-access repository. The reference lists of the final included articles were reviewed to identify relevant studies, and those studies were added for full-text review.

We used a mix of keywords and subject headings representing outpatient, community-based, and/or veterans’ PC. Terms for PC included palliative care, palliative medicine, palliative nursing, palliative treatment, palliative therapy, and palliative program. These terms were combined with “Boolean AND” to terms for outpatient care (e.g., ambulatory care, ambulatory care facilities, and outpatients), community-based care, or veterans. Results were further limited to those related to qualitative research (e.g., qualitative research, focus groups, interviews, and questionnaires).

All citations were imported into an EndNote 20 (Clarivate Analytics) library and uploaded into Covidence (Veritas Health Innovation, Melbourne, Australia), a systematic review-screening software.

Study Selection

Six reviewers (ND, DH, HD, JM, JBV, BGK) independently screened references by title and abstract in the Covidence systematic review screening software. Two reviewers evaluated each potential study, and conflicts were resolved by consensus.

Next, the included articles were independently screened by three reviewers at the full-text level (ND, DH, BGK). Conflicts at this stage were once again resolved by consensus. The screening strategy aimed to identify all qualitative peer-reviewed studies about the implementation of CBPC in the United States after the passage of the ACA in 2010. A Population, Intervention, Comparison, Outcome, Time (PICOT) framework was used to focus the review inclusion criteria. Specifically, our review focused on provider and health system perspectives (Population) about CBPC (Intervention) implementation characteristics and barriers/facilitators of implementation (Outcomes) in the United States after ACA (Time). Given the focus on provider and health system perspectives, our search focused on qualitative study designs, and there was no comparison group. This review is primarily interested in the application and implementation of CBPC in a real-world outpatient setting.

Studies were included if they satisfied all the following criteria:

1. Original research published between January 1, 2010, and January 9, 2024, in English. Only articles published in English met the inclusion criteria based on the abstract, due to the focus on U.S. context.

2. Evaluated health care provider or health system leadership perceptions in the United States.

3. Used qualitative methods to assess perceptions.

4. Evaluated perceptions about early CBPC implementation, barriers, or facilitators.

Studies were excluded if they met any of the following criteria:

1. Evaluated CBPC outside of the United States (wrong setting).

2. Non-peer-reviewed research, conference abstract-only, case studies, commentaries, reviews, and theoretical analyses were excluded (wrong design).

3. Evaluated patient perceptions of CBPC interventions (wrong population or participants).

4. Qualitative evaluations of hospital-based PC, hospice use, or PC at the end of life (wrong intervention).

5. Quantitative studies, case studies, and randomized control trials that reported effectiveness and quality outcomes (wrong design).

Definition of CBPC

We defined CPBC as PC services delivered by specialty-trained PC clinicians in settings outside of an acute care hospital, emergency department, or skilled nursing facility. Acceptable settings included outpatient clinics, telehealth or virtual care, and home-based PC. We excluded studies evaluating hospice or similar end-of-life care in any care setting given our interest in PC delivered upstream in the serious illness care continuum. We excluded pediatric PC due to the substantial differences in the patient, caregiver, provider, and systems factors impacting implementation in a pediatric context.

Data Extraction

Three reviewers independently extracted qualitative data from each included study (ND, DH, BGK) and differences were resolved by consensus. A data-extraction form within the COVIDENCE software was used to organize extracted data into the PRISM domains and sub-domains (Supplemental Materials). Some data were relevant for more than one domain. All data were extracted in Covidence and exported to Excel for synthesis. We anticipated a broad heterogeneity of health system factors, care settings, patient populations, and intervention components. Thus, in addition to extracting qualitative themes, we extracted study data characteristics to describe this diversity of CBPC programs reflected in the evidence base. We also used the CASP Qualitative Studies Checklist (n.d.) to evaluate the quality of included studies. Finally, since some studies also included quantitative data alongside qualitative data, we also extracted these data when appropriate.

Data Synthesis

Framework synthesis was used to categorize themes, guided by the PRISM framework (Brunton et al., 2020; Oliver et al., 2008). Specifically, we synthesized the barrier and facilitator themes from the PRISM domains/sub-domains used in our data extraction into three overarching theme levels: (a) provider (such as individual attitudes and beliefs, communication, and team dynamics); (b) organizational (including infrastructure needs and institutional support); and (c) external environment, such as health care policies (insurance coverage and payment), community resources (health and social services), economic factors (workforce availability and competition), and performance data and standards. Due to the exploratory nature of the question, we used a narrative approach to synthesize the themes.

Results

The search identified a total of 3,340 references. Duplicate citations (n = 1,721) were automatically removed, leaving 1,619 citations to be screened in the title/abstract phase. One hundred fifty-seven articles warranted full-text screening; 123 of those articles were excluded, resulting in 34 articles that met the inclusion criteria. The article-selection process is presented by flowchart as per PRISMA guidelines (Figure 2). The 34 articles that were included varied by provider types (PC providers, referring providers, administrators) and practice settings (PC clinic, specialty-embedded PC clinic, home) (Table 1). Twelve of the 34 studies evaluated CBPC embedded within oncology care.

Figure 2.

PRISMA Flow Diagram.

PRISMA: Preferred Reporting Items for Systematic Reviews and Meta-Analyses.

Table 1.

Characteristics of Studies Included in the Review (n = 34).

Characteristics of included studies		Frequency (n, %)
Publication year	2010–2014	3 (8.8%)
	2015–2019	14 (41.2%)
	2020–2024	17 (50%)
Study design	Interviews with providers	25 (73.5%)
	Focus groups with providers	8 (23.5%)
	Survey of leadership or teams	7 (20.6%)
Study region	Northeast	13 (38.2%)
	West	18 (52.9%)
	Midwest	7 (20.6%)
	South	12 (35.3%)
	Not specified	4 (11.8%)
Rurality	Rural	10 (29.4%)
	Urban	10 (29.4%)
	Not specified	17 (50%)
Practice setting	Academic or not-for-profit setting	17 (50%)
	VA setting	10 (29.4%)
	Integrated health care system	6 (17.6%)
	For-profit setting	1 (2.9%)
	Other	8 (23.5%)
	Not specified	6 (17.6%)
Clinical specialty	Cancer	12 (35.3%)
	Cardiovascular disease	3 (8.8%)
	Chronic lower respiratory disease	2 (5.9%)
	Advanced liver disease	2 (5.9%)
	Amyotrophic lateral sclerosis	1 (2.9%)
	Not specified	17 (50%)

Quality of Included Studies

Quality assessments for the included studies are presented in Supplemental Table 4. The quality of included studies was generally high. However, the most common limitation was for reflexivity, or whether authors critically examined their roles, biases, and relationships with study participants. Reflexivity was insufficiently reported in 15 studies (Back et al., 2014; Bekelman et al., 2016; Dillon et al., 2021; Dudley et al., 2018, 2019; Giannitrapani et al., 2023; Gidwani et al., 2017; Kates et al., 2021; Keim-Malpass et al., 2015; Kim & Flieger, 2023; Lalani & Cai, 2022; Mollica et al., 2018; Shinall et al., 2022; Smith et al., 2013; Washington et al., 2022). Other quality limitations included consideration of ethical issues (Back et al., 2014; Gibbs et al., 2015; Hawkins-Taylor et al., 2021; Hill et al., 2022; Weng et al., 2022) and insufficient data collection and analysis (Gibbs et al., 2015; Weng et al., 2022).

Provider Level

Knowledge, Attitudes, Training, and Education.

Twenty-four studies examined the knowledge, attitudes, and beliefs of providers referring patients for outpatient PC. Twenty-two studies mentioned the training and education received by providers, either those referring to PC or those on the PC team (Table 2).

Table 2.

Summary of Provider Perceptions About Barriers and Facilitators to Community-Based Palliative Care.

Levels	Themes, (n = # articles)	Perceived barriers	Perceived facilitators
Provider	Referring provider knowledge, attitudes, beliefs (n = 24)	Lack of awareness of CBPC resources Lack of clarity on who and when to refer to CBPC Misconceptions about outpatient CBPC	Evidence for benefits of early CBPC Normalization of early CBPC among referring providers
	Training and education of referring providers (n = 22)	Lack of formalized training opportunities in CBPC	Training in both curative and early CBPC Different skills training needs for providing inpatient or end-of-life and early CBPC
	Team dynamics within the CBPC team: building an interdisciplinary team (n = 26) a	Lack of interdisciplinary team members Discomfort addressing spiritual needs	Interdisciplinary teams improving care coordination Interdisciplinary teams addressing spiritual care Interdisciplinary teams bridging providers Communication within interdisciplinary team
	Team dynamics between referring providers and CBPC team: roles and communication (n = 27) b	Lack of clarity on roles	Team dynamics between referring providers and CBPC team: roles and communication (n = 27)a
Organizational	Time infrastructure (n = 20)	Long wait times for CBPC appointments Patients not having time for CBPC appointments	Luxury of time given to CBPC providers Coordination of CBPC appointments with other appointments
	Physical infrastructure (n = 20)	Geographic dispersion of clinics	Embedded clinics increasing access and communication
	Technologic infrastructure (n = 16)	Fragmented electronic health record and scheduling systems Telehealth impeding effective communication Difficulties adapting to telehealth for patients and providers	Integrated electronic health record Telehealth improving communication and rapport Telehealth facilitating access to PC
	Institutional support (n = 14)	Lack of institutional resources Conflicting goals of leadership	Leadership buy-in
External environment	Workforce and human resources (n = 28) c	Shortage of CBPC providers, especially in rural areas Poor financial incentives to specialize in PC Burnout of CBPC providers Regulations limiting scope of practice	Using telehealth to mitigate workforce shortages
	Insurance and reimbursement (n = 15) d	Poor or difficult reimbursement for CBPC services Inadequate coverage of CBPC services by patient insurance plans	Standardized reimbursement benefit
	Performance data, protocols, and procedures (n = 15) e	Lack of standardized quality metrics Lack of standardization in CBPC service provision	Developing performance data and quality metrics Sharing best practices across institutions

Note. In some instances, similar themes from the data-extraction form were combined into a synthesized theme during the content analysis. CBPC = community-based palliative care; PC = palliative care.

^aTotal 26 studies appeared in either theme category: 20 from team dynamics, 14 from cultural/religious sensitivity.

^bTotal 27 studies appeared in either theme category: 20 from inter-provider communication, 23 from coordination across departments.

^cTotal 28 studies appeared in either theme category: 17 from workforce availability, 24 from human resources.

^dTotal 15 studies appeared in either theme category: 9 from regulatory environment, 12 from payor reimbursement policies.

^eTotal 15 studies appeared in either theme category: 5 from performance data, 12 from protocols and procedures.

Barriers included referring providers’ limited knowledge about the availability, eligibility, and scope of outpatient PC. Participants felt inadequate awareness of CBPC and a “lack of a clear and well-disseminated definition” of PC were barriers to referral (Lalani & Cai, 2022; Schenker et al., 2014). Participants mentioned that PC was often misconstrued as hospice and synonymous with giving up on the patient (Washington et al., 2022). This misunderstanding was particularly problematic among some oncologists and surgeons, who described PC as “trying to unplug the vent” and “taking their patients away” (Giannitrapani et al., 2023; Sasnal et al., 2023; Tartaglione et al., 2018). Unclear eligibility criteria for CBPC compared to inpatient PC consultation was mentioned as a barrier (Lalani & Cai, 2022). For example, for “both clinicians and administrators, the pathway and trigger points for referral to PC are often not clear” (Keim-Malpass et al., 2015). PC also was assumed to be more suitable for patients with cancer than for non-malignant diagnoses (Mc Veigh et al., 2019).

Barriers included few opportunities to have PC training within medical education, with limited knowledge about PC by referring providers; many studies indicated that additional training, either formal or informal, was needed for providers to refer to CBPC (Dudley et al., 2018). For PC providers, distinct philosophies of inpatient versus outpatient PC indicated a need for different training approaches, depending on practice setting. As stated by Back et al,

early palliative care clinicians begin by focusing on building rapport and symptom control in order to build the patient trust needed for end-of-life decision making . . . while inpatient palliative care clinicians typically deal with major shifts in patient status in a single visit, early palliative care unfolds over a longer period of time and multiple contacts (Back et al., 2014).

Referring provider knowledge was perceived to be a potential facilitator when providers were aware of the benefits and value of CBPC. Perceived advantages of CBPC included improved communication with patients, emotional support for patients and families, assistance for patients with medical complexity, and increased coordination of care (Bekelman et al., 2016; Hay, Lefkowits, Crowley-Matoka, Bakitas, Clark, Duska, Urban, Chen, et al., 2017). Providers also recognized the need for earlier referrals to normalize PC as part of the standard care pathway (Dillon et al., 2021; Hay, Lefkowits, Crowley-Matoka, Bakitas, Clark, Duska, Urban, Creasy, & Schenker, 2017). Cross-training nurses in both their specialty and PC was perceived to be a facilitator for some oncology providers (Sullivan et al., 2023; Tartaglione et al., 2018).

Team Dynamics.

Twenty-six studies mentioned team dynamics within CBPC teams, and 27 studies characterized team dynamics between referring providers and the CBPC team (Table 2).

Interdisciplinary teams, which often included nurses, case managers, and social workers, were viewed to facilitate CBPC implementation (Hill et al., 2022; Mc Veigh et al., 2019). To build interdisciplinary teams, some PC programs shared or borrowed social workers or chaplains from other clinical teams (Dudley et al., 2018; Sullivan et al., 2023). Some participants described team roles and organization within the interdisciplinary team (Bekelman et al., 2016; Dudley et al., 2019). A few studies mentioned that interdisciplinary teams were better able to meet social and spiritual needs through staff dedicated to those services (Lalani & Cai, 2022; Siler et al., 2018); however, a lack of training and time to address spiritual and cultural needs were viewed as challenges to CBPC implementation (Isaacson et al., 2015; Lalani & Cai, 2022; Siler et al., 2019).

Team dynamics between referring providers and CBPC providers were perceived to be a barrier when roles or patient prognoses were unclear. Some oncologists felt that referrals could lead to “confusion” or “mixed messages” for patients and saw providing PC services as within their scope of practice (Gidwani et al., 2017; Schenker et al., 2014). Others reported “poor communication with PC specialists about prognosis and care,” if “each discipline was unaware of the other’s differing prognosis” (Gidwani et al., 2017). Other referring providers desired more involvement: “If I’m taking care of a patient for years, why should I absolve myself of the nitty gritty of the end of their life because there’s a palliative care service to do that?” (Arney et al., 2022).

However, close professional relationships and clear communication between referring providers and the PC team could facilitate care coordination. By building relationships with referring providers through frequent and repeated interactions, the PC team could educate referring providers on the role and value of PC (Holdsworth et al., 2022; Sasnal et al., 2023). Clear communication was also mentioned frequently, such as clarifying roles between outpatient PC and primary or specialty care and aligning prognoses and care plans (Bekelman et al., 2016; Gidwani et al., 2017; Siler et al., 2018).

Another facilitator of CBPC was increasing interactions between PC and referring providers, such as serving on the same rounds, case conferences, working groups, and quality-improvement committees (Arney et al., 2022; Sasnal et al., 2023; Sullivan et al., 2023). These interactions were perceived as helpful to fostering a “culture of acceptance” toward PC (Sullivan et al., 2023). In addition, non-physician members of the PC team, like nurses, social workers, physical therapists, and speech therapists, who serve on and liaise with the referring providers’ teams were viewed as facilitators (Gidwani et al., 2017; Sasnal et al., 2023).

Organizational Level

Infrastructure.

One concern was that outpatient PC would be “one more appointment” on top of existing health system interactions (Keim-Malpass et al., 2015). This was especially pertinent for patients less mobile from chronic illness symptoms or living far from clinics with palliative services (Gidwani et al., 2017; Hawkins-Taylor et al., 2021; Isaacson et al., 2015; Lalani & Cai, 2022; Tay et al., 2021). Some practices mentioned long wait times for PC appointments as a barrier to CBPC: “We know some referrals are not being made because of the referring doctor’s understanding of our wait time” (Smith et al., 2013).

Many studies mentioned the benefit of embedded CBPC services, which co-located CBPC teams with other specialties or services (Table 2). Co-location could enhance communication by fostering an environment conducive to frequent, spontaneous interactions between providers and high-quality communication (Arney et al., 2022; Hay, Lefkowits, Crowley-Matoka, Bakitas, Clark, Duska, Urban, Chen, et al., 2017; Sasnal et al., 2023). Co-location could also increase PC access by shortening the time for consultation and encouraging joint or successive patients visits by referring and PC providers (Sasnal et al., 2023; Sullivan et al., 2023). Some clinics also mentioned how PC could fill in empty time slots in routine care delivery (Washington et al., 2022). Longer appointment times were viewed as a facilitator to CBPC, as components of holistic, high-quality PC, like spiritual care, can be de-prioritized under time pressures in other clinical settings (Lalani & Cai, 2022). CBPC was described as “affording a luxury of time,” with longer visits occurring over a longer time horizon and earlier in the illness trajectory (Back et al., 2014).

Institutional Support.

In some studies, limited institutional resources were a barrier to CBPC (Table 2): “Our institution loves the concept and work of our clinic as long as they don’t have to pay for much” (Smith et al., 2013). Participants also mentioned that institutions are measured by mortality metrics that exclude hospice users but not PC users (Sullivan et al., 2023), which was viewed to create conflict between providers focused on life-sustaining care and CBPC referral for high-risk patients.

Leadership buy-in was often mentioned as a facilitator to CBPC success (Table 2). Having a “manager,” “quarterback,” or “champion” to advocate for PC at the institutional level resulted in policies that supported PC use and growth (Coulourides Kogan et al., 2022; Sullivan et al., 2023). Obtaining support from leaders of service lines, like surgery, could also improve interprovider collaboration and communication (Sasnal et al., 2023). One strategy to obtain buy-in was making a “business case” for PC expansion by pointing to cost-savings or “improvements in patient outcomes and primary care staff workflow” (Bekelman et al., 2016).

External Environment

Workforce and Human Resources.

Twenty-eight studies mentioned workforce and human resources (Table 2). Many studies pointed to shortages in PC clinicians and support staff. With a limited workforce, PC clinicians were less likely to provide timely care, offer evening or weekend coverage, and participate in multidisciplinary working groups (Sullivan et al., 2023). These shortages were especially pronounced in rural communities (Isaacson et al., 2015; Keim-Malpass et al., 2015). Shortages were also seen among case managers and social workers, which could impact bereavement support and linkage to community resources (Hill et al., 2022; Sullivan et al., 2023). Dudley et al. found that high turnover was the principal reason for shortages, attributed partially to improper training (Dudley et al., 2019).

Rahman et al. outline how these shortages can lead to trade-offs for home- and community-based PC services just beginning to grow: “Do [practices] hire new staff before enrollment numbers are up or risk overworking existing staff as enrollment builds?” Indeed, many studies mentioned the risk of psychological distress and burnout among PC providers (Kates et al., 2021).

Nonetheless, some studies offered potential strategies to counteract the limited workforce. Task-shifting clinical responsibilities by expanding the scope of practice for nurse practitioners and other advance practice nurses could be one solution (Dudley et al., 2018; Lalani & Cai, 2022). However, policies would need to be in place allowing these nurses to prescribe controlled substances more broadly and provide home-based care (Dudley et al., 2018). Offering consults via telehealth could also improve access to PC amid workforce shortages, including in rural areas (Bandini et al., 2022; Keim-Malpass et al., 2015; Mc Veigh et al., 2019; Sasnal et al., 2023).

Insurance and Reimbursement.

Limited insurance coverage and reimbursement for CBPC was noted as a barrier by some studies (Table 2). Unlike hospice, PC was viewed with hesitation by some providers, unsure whether plans covered it (Rahman et al., 2022), especially for those not eligible for Medicare (Lalani & Cai, 2022; Washington et al., 2022). Providers found reimbursement lacking or inadequate to address emotional and psychosocial needs (Kim & Flieger, 2023; Shinall et al., 2022). Poor reimbursement for these psychosocial services could make it more difficult to justify CBPC to health system administration (Hawkins-Taylor et al., 2021). Gidwani et al. explained the organizational consequences of inadequate reimbursement: “Oncologists reported an under-availability of PC-trained providers in the outpatient setting, which they anticipated was due to health care administrators choosing to provide clinic space to higher-revenue generating providers” (Gidwani et al., 2017).

A formal reimbursement structure that would standardize services was a potential facilitator (Dudley et al., 2018; Hawkins-Taylor et al., 2021). This structure could also support non-physician providers like advance practice palliative nurses (Dudley et al., 2018) because a standardized reimbursement benefit offered by a private payer could improve reimbursement for interdisciplinary team providers, cover durable medical equipment, and simplify billing (Coulourides Kogan et al., 2022).

Performance Data, Protocols, and Procedures.

Many studies called attention to the “absence of national quality metrics” and lack of standardized services as barriers to CBPC (Table 2) (Rahman et al., 2022). Bekelman et al. identified that CBPC may be considered “lower priority” because “patient-centered needs (i.e., symptoms, quality of life) were not included in performance measures” (Bekelman et al., 2016). Lalani and Cai mentioned how unclear guidelines regarding outpatient PC practice could induce “confusion, misunderstanding, and delay in providing adequate palliative care services” (Lalani & Cai, 2022). Some administrators in home-based PC also believed that service standardization would facilitate CBPC scaling (Rahman et al., 2022).

Developing and standardizing patient-centered performance measures was viewed as a facilitator of CBPC (Tartaglione et al., 2018). For example, five home-based PC groups developed their own quality metrics for stakeholders (Rahman et al., 2022). In addition, sharing best practices across institutions through provider networks and conferences was mentioned as a strategy to facilitate CBPC implementation (Gibbs et al., 2015).

Quantitative Findings

In a survey by Gibbs et al. (2015), more than half of community-based programs surveyed reported that lack of patient/family knowledge about CBPC (68%), lack of buy-in from physicians (56%), and limited budget for CBPC services (52%) were barriers. More than a third reported that workforce (44%) and reimbursement (44%) were barriers (Gibbs et al., 2015). In a survey by Smith et al. (2013), more than half of CBPC programs surveyed (n = 20) reported that insufficient staffing and funding were challenges (Table 3).

Table 3.

Quantitative Results From Select Articles Evaluating Barriers and Facilitators to Community-Based Palliative Care.

Levels	Themes	Reported barriers
Provider	Referring provider knowledge, attitudes, beliefs	Gibbs et al. (2015): 56% of respondents reported lack of buy-in from physicians Weng et al. (2022): 53% of community teams reported lack of clinician knowledge/experience as a barrier to rural PC Weng et al. (2022): 29% of community teams reported medication staff commitment/buy-in as a barrier to rural PC
	Training and education of referring providers	Gibbs et al. (2015): 12% of respondents reported PC training opportunities for existing team members are not readily available
	Team dynamics within the CBPC team: building an interdisciplinary team	Not mentioned
	Team dynamics between referring providers and CBPC team: roles and communication	Gibbs et al. (2015): 12% of respondents reported PC is available, but there are few referrals Smith et al. (2013): 40% clinics reported being overwhelmed by referrals, 25% reported too few referrals Weng et al. (2022): 41% of community teams reported coordination of care between providers/settings as a barrier to rural PC
Organizational	Time infrastructure	Not mentioned
	Physical infrastructure	Not mentioned
	Technologic infrastructure	Not mentioned
	Institutional support	Gibbs et al. (2015): 52% of respondents reported limited budget for PC services Gibbs et al. (2015): 16% of respondents reported lack of buy-in from institution leadership Smith et al. (2013): 55% of respondents (“insufficient funding”)
External environment	Workforce and human resources	Gibbs et al. (2015): 44% of respondents reported a lack of adequately trained PC physicians, nurses, clinical social workers, others Smith et al. (2013): 55% of clinics reported being below staff capacity to meet expected needs Weng et al. (2022): 59% of community teams reported human resources to provide services as a barrier to rural PC
	Insurance and reimbursement	Gibbs et al. (2015): 44% of respondents reported poor reimbursement for PC services Smith et al. (2013): 55% of clinics reported insufficient funding Weng et al. (2022): 76% of community teams reported reimbursement as a barrier to rural PC
	Performance data, protocols, and procedures	Not mentioned

CBPC: community-based palliative care; PC: palliative care.

In a survey by Weng et al. (2022), more than three in four reported that community awareness (76%) and reimbursement (76%) were challenges. More than half reported that human resources to provide services (59%) and lack of clinician knowledge/experience with PC (53%) were challenges (Weng et al., 2022). About one-third reported coordination of care between providers/settings (41%) and medical staff commitment/buy-in to CBPC (29%) were challenges (Weng et al., 2022) (Table 3).

Discussion

This qualitative scoping review assessed provider perspectives on barriers and facilitators to implementing CBPC. Included studies assessed a range of settings (academic and non-profit; for-profit; integrated health systems; and the VHA) and provider types (non-PC providers who refer to CBPC; specialty PC providers including physicians, nurses, social workers, chaplains; and health care system administrators or leadership). At the provider level, misperceptions of CBPC by referring providers, poor inter-provider communication, and unclear roles were the major perceived barriers to CBPC. Conversely, multidisciplinary CBPC teams, referring provider education on PC, and collaboration were perceived facilitators. At the organizational level, time constraints were perceived barriers while leadership buy-in, shared medical records, and co-location of CBPC into specialty clinics were perceived facilitators. External environment issues, including workforce availability and insurance reimbursement, were also common themes. Based on this evidence, successful CBPC implementation requires addressing factors at the provider, organizational, and external environment levels.

Our review suggests that one of the biggest barriers to growing CBPC is the attitudes and beliefs that referring providers have toward CBPC. These include not understanding the goal of CBPC (i.e., equating it with hospice), not knowing the scope of CBPC (i.e., what services are available), lack of role clarity (i.e., who manages which aspects of the patients’ care), concerns of losing ownership of patient care (i.e., disagreements on prognosis), and uncertainty about when to refer to CBPC. These concerns confirm prior systematic reviews on referring provider perceptions of PC within and outside the United States (Salins et al., 2020; Tay et al., 2021; Zhang et al., 2024).

Increasing communication and building trust between the PC and non-PC teams are keys to overcoming misconceptions and knowledge gaps and increasing appropriate referrals. To do so, CBPC programs need to ensure there are rigorous systems in place to facilitate communication both between PC and non-PC providers and within the PC team itself (Killackey et al., 2020). Facilitators to communication discussed in this review include technological infrastructure (e.g., integrated Electronic Health Records (EHR), electronic messaging software, centralized scheduling systems, and referral alert flags) and physical infrastructure (e.g., co-location of PC clinics and opportunities for in-person communication). Most notably, many studies highlighted using embedded clinics to build trust between PC and non-PC providers, providing a consistent avenue for communication and decreasing appointment burdens for patients. Indeed, multiple studies have shown the benefit of directly embedding PC clinics into oncology clinics on both patient outcomes and health care costs (Bayne et al., 2016; Gast et al., 2022; Greer et al., 2013; Hay, Lefkowits, Crowley-Matoka, Bakitas, Clark, Duska, Urban, Chen, et al., 2017; Rabow et al., 2018). Some clinical specialties, such as oncology, are more likely to incorporate PC into treatment plans than others, such as pulmonology and advanced heart failure (Ament et al., 2021; Klinedinst et al., 2019; Rush et al., 2017). However, successful collaboration has been observed between PC and non-PC providers across diverse specialties, including pulmonology, cardiology, and neurology (Fasolino & Hollinger, 2015; Gandesbery et al., 2018; Kluger et al., 2018). PC providers that have built trust with non-PC providers have helped increase awareness about the unique benefits of PC, such as specialized symptom control, communication strategies, and increased time with patients (Bekelman et al., 2016; Hay, Lefkowits, Crowley-Matoka, Bakitas, Clark, Duska, Urban, Creasy, & Schenker, 2017). Such non-PC buyin is crucial if CBPC programs want to garner institutional support for expansion.

As CBPC teams determine the most appropriate care delivery models for their services, it will be important to facilitate role clarity with the non-PC team. Yet, evidence regarding the optimal model is still uncertain. On the one hand, a systematic review and meta-analysis by Fulton et al. (2019) of eight RCTs and two cluster-randomized trials showed benefit of “moderate integration” of outpatient PC with cancer services on patient’s quality of life and symptom burden. For all studies in the review by Fulton et al., PC and oncology services were located in the same facility, further strengthening the case for embedded clinics. On the other hand, Chyr et al. performed a mixed-methods review of studies that examined non-cancer ambulatory “shared-care models,” where non-PC and PC physicians worked jointly in patient care vs “consultative care models,” where PC physicians offered advice but did not primarily direct patient care (Chyr et al., 2022). This review did not find a benefit of either model over usual care on patient satisfaction or health-related quality of life, although there was noted to be a high level of variability in CBPC intervention structures. Further work is needed to explore different models of CBPC integration and which ones may be appropriate in different clinical contexts.

Building an interdisciplinary PC team, and maintaining close communication within the team, is another important element to increasing buy-in for early referrals to PC (Sasnal et al., 2023; Siler et al., 2018; Tartaglione et al., 2018). Team members such as social workers, case managers, and chaplains can offer comprehensive services not always available outside of CBPC and educate referring providers about the benefits of incorporating PC into patient care (Hill et al., 2022; Lalani & Cai, 2022; Weng et al., 2022). In addition, CBPC requires navigating unclear role boundaries among the multidisciplinary teams within CBPC programs, which can challenge implementation (Formagini et al., 2022; Kluger et al., 2018).

On a larger scale, this review demonstrates that CBPC expansion is hampered by constraints related to insurance reimbursement, workforce limitations, and inconsistent quality metrics and performance measures. While some studies have shown the potential for inpatient and outpatient PC programs to save costs in the health care system (Bower et al., 2024; Collins et al., 2021; Kaufman et al., 2021; May et al., 2015; Ruck et al., 2018), CBPC programs vary in terms of services, providers, insurance coverage, and care setting (Heitner et al., 2019). Although palliative medicine (physicians and advance practice providers) is widely reimbursed, reimbursement for the multidisciplinary members within CBPC teams is lacking. Therefore, many providers in feefor-service systems provide CBPC services at a loss, impacting program sustainability and limiting further expansion (B. A. Bowman et al., 2019). Poor reimbursement and suboptimal provider billing practices for PC services also contribute to a workforce shortage, both of physicians and interdisciplinary team members, further limiting the ability of programs to expand to meet growing patient demand. This is especially true in rural and other underserved areas, since travel time for community-based providers is not reimbursable, leading to increasing PC health care disparities (Keim-Malpass et al., 2015).

Fortunately, there have been some recent innovations in outpatient PC reimbursement models. Medicare Accountable Care Organizations (ACOs), created under the ACA to encourage care coordination and reimburse for quality of care, have a unique incentive to provide PC across the care continuum (Lustbader et al., 2017; Roiland et al., 2020). Given their flexibility to provide PC services not currently reimbursed by fee-for-service Medicare, ACOs are a fertile testing ground for CBPC, with over a third already implementing CBPC (Roiland et al., 2020). The Center for Medicare and Medicaid Innovation’s models have also reimbursed CBPC services, including 24/7 medical support under the Primary Care First model and comprehensive needs assessments and caregiver support under the Guiding and Improved Dementia Experience model (Kaufman & Grant, 2024; Primary Care First, 2019). Some integrated health systems have adopted robust outpatient and home-based PC services, most notably the VHA and Kaiser Permanente (Kaufman et al., 2024; Milch & Brumlet, 2005). While these are promising developments, until there is a uniform standard for insurance reimbursement of PC services, the expansion of CBPC will not be able to match patient demand on a national level.

Furthermore, the field of PC needs to develop standardized performance metrics and outcome data to demonstrate the tangible benefits of PC both to patients and to health systems. One solution is to incorporate PC outcomes into reportable quality measures. For example, Medicare has included Advanced Care Plans as one of its Clinical Quality Measures (Centers for Medicare & Medicaid Services, 2003). The Center to Advance Palliative Care and the Palliative Care Quality Collaborative have been leaders in the effort to make data collection more robust, with the former collecting data on CBPC programs and the latter developing a “national unified specialty palliative care quality data registry and collaborative” (Heitner et al., 2019; Palliative Care Quality Collaborative, n.d.). In addition, the National Institute of Aging will lead a collaborative National Institutes of Health (NIH) effort across institutes to centralize and standardize PC research. The NIH is also funding the Consortium for Palliative Care Research Across the Lifespan to provide financial and technical support for further PC research (National Institute on Aging, 2024). Our review suggests that these initiatives should attempt to standardize outcome measures at the patient, population, and health system level, so CBPC programs can prove the benefit of their work to their institution and to payers.

Gaps in the Literature and Future Directions

While this review highlights many important barriers and facilitators to implementing CBPC programs, there were notable gaps in the literature. Addressing spiritual and cultural aspects of serious illness care is a core component of high-quality CBPC. However, few studies discussed the importance of addressing spiritual and cultural aspects of CBPC or integrating community resources (i.e., transportation, housing, and food resources) (Balboni et al., 2014; Batstone et al., 2020; Ferrell et al., 2018, 2020). When mentioned, it was usually within the context of the interdisciplinary team in general, as opposed to providing an in-depth analysis of the topics themselves. This was surprising given the inherent importance in PC of providing comprehensive, whole-patient care. In addition, since there is no designated International Classification of Disease, 10^th Edition or Health care Common Procedure Coding System code or identifier for PC services performed by specialty-level PC clinicians, claims-level data are consistently unreliable to quantify specialty-level PC work occurring nationally. Further work is needed to understand the role that spiritual, cultural, and economic forces play in the creation and maintenance of CBPC programs.

Future studies are also needed to evaluate how barriers and facilitators might vary by geographic setting (e.g., rural vs. urban), provider types (e.g., physicians vs. advanced practice providers), and especially by different diagnoses. For instance, while we identified studies across a range of health system settings and clinical specialty groups, oncology clinics were more commonly studied; there may be an opportunity to explore how implementation is different in the context of dementia, heart failure, or other non-cancer diagnoses. One promising innovation is the new CMS payment model “Guiding an Improved Dementia Care Experience” (GUIDE), which requires services that are often provided by PC providers as a part of whole-person care for people living with dementia (Kaufman & Grant, 2024). With nearly 400 provider groups participating nationally (Fowler et al., 2024), GUIDE may motivate implementation research to understand how providers are integrating palliative services into the longitudinal care model to meet standards set by CMS for an expanded set of diseases.

Furthermore, while many studies point to the limited supply of PC professionals (Kamal et al., 2017, 2019), evidence for successful strategies and policies to strengthen the multidisciplinary PC workforce is limited. Our qualitative review strongly reinforced the importance of multidisciplinary and interdisciplinary care teams. Most qualitative studies included participants with a variety of disciplines and roles to create a rich picture of factors at different ecological levels. However, quantitative data to assess the capacity and availability of PC-trained providers are lacking; documentation of Hospice and Palliative Medicine certification among physicians is available through the CMS Medicare Diabetes Prevention Program (Hu et al., 2024), but workforce numbers for nurses and social workers with PC skills are needed to better understand PC capacity nationally.

Finally, few studies in our review addressed contextual factors in the Implementation and Sustainability PRISM domain, and this is an important area for future research. A recent survey conducted by the Center to Advance Palliative Care reported that 92% of team leaders were worried about the continued viability of their PC programs (B. Bowman et al., 2024). Studies exploring how CBPC programs create targeted plans for sustainability and adapt to change will be crucial in both expanding and maintaining CBPC programs.

Limitations

Several limitations should be considered. First, most included studies were oncology-based. This is true of most PC research, and additional work is needed in the field to understand the nuances of non-oncology inpatient and outpatient PC alike (Bannon et al., 2018; Moens et al., 2014). Only studies that addressed provider perspectives were included (although some studies included patient as well as provider perspectives); this limitation was intentional to complement the ample reviews available evaluating patient perspectives and to identify multi-level factors to support implementation of CBPC. An additional limitation is that our study was limited to the United States and studies in English, thus missing insights from international organizations. This choice was made due to the unique structure of the U.S. outpatient health care system and insurance structure, with the goal to understand best practices for expanding CBPC programs in the United States specifically. Finally, risk of bias is difficult to evaluate in qualitative studies. However, we did use a quality tool to assess whether methods were appropriate for included studies; although most studies included in this review were of moderate or high quality, future studies in this area ought to better consider reflexivity in their methodology.

Conclusion

Given the growing body of research suggesting the benefits of early CBPC on patient and health system outcomes, it is important to evaluate the elements that can lead to a program’s success. In this qualitative systematic scoping review, 34 articles were assessed to determine provider perspectives on barriers and facilitators to implementing CBPC programs. Themes in three levels (provider, organizational, and external environment) were analyzed and highlighted (1) the importance of communication and trust in addressing misconceptions around PC and increasing appropriate referrals, and (2) outpatient PC is challenged by limits in insurance reimbursement, workforce availability, and uniform outcomes measures. When determining how best to expand CBPC programs, the field should focus on developing infrastructure and models to increase communication and trust with the health care field and push for standardization of both quality metrics and insurance reimbursement on a national level.

Supplementary Material

Supplemental material for this article is available online.

Data Availability

Reproducible search strategies for all databases are detailed in the online Supplemental Materials and can be accessed via an open-access repository (https://duke.is/5/zvg4).