What Are the Models for Delivering Palliative Care in Rural Areas?

Introduction and Scope of the Problem

Palliative care and hospice services have evolved and matured mostly in urban areas alongside robust health infrastructures, with highly trained specialists and teams and other needed resources. Yet, nearly half of the world’s population resides in rural locales and experiences marked health disparities. Rural areas, geographically isolated with large distances between established communities, often have small populations and struggle to maintain primary care clinicians with limited to no access to specialty care such as palliative care. Palliative care delivery models require interdisciplinary teams of physicians, nurses, pharmacists, social workers, chaplains, and many other health care professionals, who may be in short supply in rural health care systems. Contributing to and compounding this limited clinician access is the fact that rural regions often lack robust health infrastructure, resources, broadband connectivity, and capacity to effectively scale up many health care models adopted in urban settings.

Noted differences in the characteristics of urban and rural populations in the United States (U.S.) include a tendency for rural residents to be older, chronically ill, and living below the poverty line. They disproportionately experience poorer health outcomes, and their geographic disparities compound racial health inequities. Although many rural communities share similar outcomes, rural regions often differ in population, infrastructure, and culture, with each area facing a distinct combination of challenges to delivering high-quality specialty palliative care. All “rural” areas are not the same; rural communities represent a heterogeneous group of locales—some more remote than others—complicating systematic health care delivery to their residents. Terms such as “remote” and “frontier” may indicate more isolated geographical regions.

Barriers and Opportunities for Effective Rural Palliative Care

Perspectives of Palliative Care in Rural Communities

Table 71.1 lists the many issues and considerations to address when establishing rural palliative care services. Similar to their urban counterparts, rural patients and their family caregivers may have limited awareness and misconceptions of palliative care, often equating palliative care with end-of-life or hospice services. Compounding these misperceptions, local trusted clinicians may be reticent to refer to, recommend, or incorporate palliative care. Although not specific to rural settings, a recent systematic review indicated that clinicians hesitate to recommend palliative care due to concerns about alarming the patient and family or lack of consensus with timing and criteria for referrals. In many rural communities, acceptance may be dependent on the advice of a trusted local health care clinician or extended social support community. Rural patients may draw on prior experiences with specialty care outside their community where they might have dealt with fragmented care. While awareness and perceptions of palliative care are slowly changing, several studies identify misconceptions of palliative care as a major barrier to integration and widespread access. Additionally, many of the antecedents and triggers to palliative care referral, such as a serious illness diagnosis or worsening prognosis, may be considered “taboo” or not “in line” with established mores of rural or remote communities.

Table 71.1

Issues, Considerations, and Strategies in Rural Palliative Care

Source: From references 9, 10, 14, 23, 25–27, 29, 42, and 51.

Considerations and Issues	Potential Considerations and Strategies
Community readiness	Conduct a needs assessment. Elicit perspectives of community providers, patients, family caregivers, and others on palliative care awareness, current palliative care access, desire for palliative care services, current palliative care training opportunities, and current health care infrastructure. Recognize the importance of community ownership in building and sustaining successful palliative care models in rural areas by partnering with key community stakeholders/partners.
Site of care	Partner with existing nonpalliative community practices either through collaborative or consultative models. Deliver care in the home through telehealth, nurse-led, navigator-led, or family caregiver–supported models.
Duration of care	Similar to nonrural palliative care, duration of care may be a single visit, short term, or long term. The small community population may contribute to difficulty in maintaining a local palliative care service and may overwhelm primary palliative care providers balancing other clinical needs. Of note, rural residents are more likely to be connected to palliative care later in their disease trajectory.
Patient population	Similar to nonrural palliative care, patients are referred to palliative care services for a variety of triggers such as disease diagnosis or progression or refractory symptoms. A comprehensive palliative care assessment should include evaluation of cultural, spiritual, environmental, and logistical concerns often faced by rural residents in accessing quality health care.
Care workflow, logistics, and policies	Identify primary responsibility of care depending on the type of palliative care model adopted and establish days of care delivery and 24-hour coverage. Identify and address barriers to adoption of telehealth services such as IT support, internet connectivity, or technology hesitancy.
Pain management	Identify and address policies, regulations, and attitudes that impact availability of opioids and other pain management necessary to address pain and suffering of those living with serious illness. Develop and implement hospice emergency kits tailored to individual needs.
Staffing	Address widespread specialty palliative care shortages through consultative and collaborative models that leverage established expertise via consultation, and develop expertise via telementoring and education. Develop innovative staffing models (partial full-time equivalents or cross-training) to staff interdisciplinary teams. Support lay navigators and family caregivers in providing support and care.
Finances	Use early adopters of national policies and payment systems that support equitable access and care as exemplars to improve delivery of high-quality palliative care in rural and remote areas. Build community ties within the local and state medical communities to lobby for expanded reimbursement, innovative and sustainable funding streams, and funded educational support.

Palliative and Primary Care Workforce Shortages

Competing urban-based health centers’ palliative care staffing demands for a limited palliative care workforce complicate delivery of high-quality palliative care in rural and remote areas. As the population ages, with older adults as the primary palliative care consumers, preexisting deficits of primary and palliative care clinicians are projected to balloon. Kamal and colleagues’ modeling of the U.S. palliative care physician workforce estimates a lack of specialty-trained clinicians by the 2030 s with potential ratios of more than 1,300 eligible Medicare beneficiaries to every physician. Rural communities, already experiencing clinician shortages, are likely to experience this burgeoning clinician drought more acutely as supportive health care infrastructure buckles under changing health care conditions. The recent Achieving Rural Health Equity report from the National Academy of Medicine highlighted some of the recent challenges of stabilizing health infrastructure, noting that since 2010 nearly 100 critical access hospitals have closed due to declining populations and changes in payer models. This combination of clinician shortage and lack of hospital beds limits the sustainability of palliative care models using inpatient consultative service in rural communities. The combination of the demand of an aging population plus ongoing unmet palliative care need merits the innovative strategies discussed throughout this chapter and highlighted in Table 71.1 .

Financial and Policy Barriers for Reimbursement of Services

Guidelines, policies, regulations, and reimbursement are highly variable across the globe. In countries with established rural palliative care outreach and robust nationally sponsored or supplemented health care, palliative care services are generally reimbursed with minimal cost to patients and their families. However, this type of reimbursement is not the norm worldwide, with reimbursement varying widely by country, payer system, and types of service. For example, rural residents within the U.S. often rely on Medicare and Medicaid, a fee-for-service model that pays for specific services such as advance care planning discussions and complex chronic care management only by approved clinicians, often excluding reimbursement of services provided by an interdisciplinary team. Furthermore, different regulations and reimbursement policies may limit the scope of practice for nurses or other health care members providing palliative care services and stipulate the timing of palliative care, often only paying for service once patients meet hospice criteria and waive the right to other Medicare-covered services, further limiting early outreach to rural residents.

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