Palliative Care in Rural Communities

Abstract

Rural communities in the United States are frequently marginalized and misrepresented. These communities face unique challenges, such as limited access to health care, nutritious food, and clean water, that contribute to persistent health disparities. This article presents the CARE (Complex, Access, Resourceful, Extraordinary) framework, which illustrates the dichotomy of rurality—its negative and positive aspects—in order to inform the development of palliative care delivery in rural settings. Various palliative care models are described that address access gaps, bolster provider capacity, and increase the provision of specialty palliative care. However, workforce shortages and reimbursement structures restrict the expansion of these services. Nurses, the largest segment of the health care workforce and the most trusted professionals, must partner with interdisciplinary colleagues and rural communities to advocate for equitable and inclusive care.

Rural communities in the United States comprise diverse cultures, people, and industries.¹ They contribute significantly to the nation’s economy, providing energy, food, water, and recreation.² However, these communities, home to an estimated 60 million people, are frequently marginalized and misrepresented.³

Rural residents face unique challenges related to social drivers of health; persistent health care disparities; resource limitations; and access to health care, including palliative care. This article aims to address these challenges, dispel misconceptions commonly associated with rural communities, and explore current models of palliative care delivery to meet rural residents’ needs. Here, we present the CARE (Complex, Access, Resourceful, Extraordinary) framework, which illustrates the dichotomy of rurality—its negative and positive aspects—in order to inform the development of palliative care delivery in rural settings (see Figure 1).

Figure 1.

CARE Framework for Rural Communities

CARE = Complex, Access, Resourceful, Extraordinary; SDOH = social drivers of health; PDOH = political determinants of health.

THE CHALLENGES

Complex.

The challenges experienced by rural communities are complex. America’s rural population is aging more rapidly than its urban population, and older adults in rural communities face increased risks of morbidity; mortality; and health conditions such as chronic obstructive pulmonary disease, diabetes, and cancer.^4–6 Rural areas are affected by social drivers of health such as poverty, poor education systems, and a lack of employment opportunities. U.S. poverty rates are higher in rural areas (15.4%) than in urban areas (11.9%).⁷ Chronic disease and serious illness affect the ability to maintain consistent employment, leading to a health–poverty trap.⁸

Though rarely addressed, political determinants of health—which “operate as a systematic process of structuring relationships, distributing resources, and administering power”—impact all aspects of health and well-being and significantly influence health inequities.⁹ For example, people of color disproportionately live in marginalized neighborhoods with concentrated poverty because of historical racial segregation.⁹ Home ownership is difficult for low- and middle-income buyers to achieve, given the persistence of unethical lending practices that sharply demonstrate disparity.^{10, 11}

Health literacy, as well as reading, digital, and financial literacy, may be lower in rural communities, affecting health and quality of life.^12–15 Literacy is a core element of communication between patients and nurses.¹⁶ A patient’s ability to use and understand oral or written words influences the design of a person-centered, holistic plan of care. Health information materials are often written at higher levels than most American adults can understand.¹⁷

Rural communities are susceptible to environmental challenges like wildfires and flooding.¹⁸ Rural residents are also at risk for tickborne and zoonotic diseases given their proximity to livestock and wildlife.¹⁹ Agriculture and livestock production create air pollutants such as ammonia and hydrogen sulfide, adding to health risks.²⁰ Pesticides and other hazardous industrial chemicals also contribute to air pollution and can contaminate water.^{21, 22}

Access.

Access to basic needs, such as clean drinking water and nutritious foods, is often limited in rural communities.^{23, 24} The rapid expansion of dollar stores has increased access to food; however, most of these foods are low in nutritional value and high in calories.²⁵ Foods with higher nutritional value are often more expensive in rural settings.²⁶

Rural health care disparities stem from limited access to medical services and a lack of qualified health care providers. However, recruitment and retention of health care providers in rural regions is an ongoing challenge, and just 12% of U.S. physicians practice in rural areas.^{27, 28} These communities need more critical health care professionals (such as NPs and social workers)²⁸ and specialty services (such as pulmonary care).²⁹ In recent years, many rural hospitals have closed or are at risk for closure due to declining patient volume and staff shortages.²⁸

People living in rural areas frequently travel farther distances to see primary care and specialty providers, and rural public transit options are limited.³⁰ Not having reliable transportation contributes to delayed or missed medical care and appointments.³¹ Lower population density leads to a smaller tax base for maintaining infrastructure, such as roads and bridges. In fact, the U.S. Department of Transportation’s Federal Highway Administration estimated that 40% of rural county roads are inadequate for travel, and nearly 50% of rural bridges are structurally deficient.³²

Additionally, a community’s built environment—its physical spaces—is a key determinant of residents’ health outcomes.³ In rural communities, the absence or deterioration of sidewalks and walking paths, for example, can negatively impact physical activity. Securing funding to mitigate such barriers can be challenging.

DISPELLING MISCONCEPTIONS

The news media and other journalistic reporting frequently misrepresent rural America, often suggesting that it comprises farmers who live in poverty and possess minimal ingenuity or vision.¹ Further, common perceptions about rural residents are less than flattering, casting them as uneducated people who are unmotivated to improve their lives. These assumptions—which we refute below—can impact perceptions about rural communities and contribute to ongoing disparities in community growth and access to services, such as palliative care.

Resourceful.

Rural communities demonstrate resourcefulness and resiliency. They have a keen sense of connectedness; residents care about their neighbors and trust that each other’s needs will be met through commitment to the collective group.³³ Rural residents’ deep-rooted networks and personal relationships, known as social capital, provide the foundation for their communities’ resilience in preparing for and recovering from natural disasters.³⁴

Rural entrepreneurs and community leaders, such as small business owners and nurses, work to tackle tough local issues—primarily out of necessity, given their low resources. For example, to address a lack of affordable housing in rural Carroll County, Virginia, local leaders partnered with state authorities and a developer to repurpose a shuttered high school into 51 affordable housing units.³⁵

A strong work ethic dominates many rural communities, yet wages are lower in these areas than in urban areas, including for nurses.³⁶ According to the 2011–2015 American Community Survey, urban RNs working in the hospital setting earned an average of $58,419 per year, while rural RNs in the same setting earned an average of $54,472.³⁷

Extraordinary.

Rural towns across the United States leverage residents’ extraordinary qualities and talents as community assets. For instance, members of a rural community in Letcher County, Kentucky, created the Letcher County Culture Hub to bring together diverse local groups—including arts organizations, volunteer fire departments, and business associations—with a shared vision of creating “new opportunities for development and enterprise.”³⁸ Bit Source, a technology startup in Pikeville, Kentucky, hired former coal miners and trained them to become web developers,³⁹ and students at Colby College in Waterville, Maine, founded The Cubby, an online platform where student artists can sell their work and keep 100% of the proceeds.⁴⁰

Additionally, rural communities are home to an estimated 3.4 million U.S. veterans,⁴¹ many of whom have been awarded for their service and possess the virtues of honor, courage, loyalty, and integrity, as well as leadership skills and a deep respect for serving others.⁴²

MODELS OF PALLIATIVE CARE DELIVERY

Palliative care services, including primary and specialty palliative care, focus on supporting patients and caregivers who are experiencing serious illnesses and chronic diseases. The use of primary palliative care, which entails delivering some elements of palliation (such as basic symptom management or goal setting) in primary care settings, has been proposed as a strategy to address workforce shortages in specialty palliative care, especially in rural and remote communities.^{43, 44} Specialty palliative care is typically more comprehensive and is delivered by an advanced interdisciplinary palliative care team.^{44, 45}

Delivering palliative care services to rural communities requires consideration of available resources (such as the availability of medications at local pharmacies, home care aides, and home meal delivery services), infrastructure (such as a lack of hospitals and health care facilities), cultural and social norms (such as preferences for privacy and to not receive services at home, and favoring home remedies over Western medicine), and the environment (for example, being unable to access patients’ homes due to weather-related issues like flooding, or because gravel or dirt roads present a barrier). Most palliative care programs were developed in large tertiary hospitals in urban areas.⁴⁶ There is limited data and guidance on developing rural palliative care programs.⁴³

Acute care setting.

According to a 2019 report by the Center to Advance Palliative Care and the National Palliative Care Research Center, nearly three-quarters of U.S. hospitals with 50 or more beds have a palliative care team.⁴⁷ Inpatient palliative care teams, which typically comprise palliative care–trained physicians, NPs, RNs, social workers, and chaplains, assist with symptom management, helping to establish goal-concordant care and navigating serious illness conversations. However, details on the structure of palliative care interdisciplinary teams in rural areas are limited. The development and sustainment of rural palliative care interdisciplinary teams may be hindered by challenges related to staffing, resource availability, and reimbursement.⁴⁶

To follow is a review of palliative care models currently used in or available to rural communities beyond the acute care setting (see Table 1^{43, 48–56}).

Table 1.

Palliative Care Models Beyond Acute Care^{43, 48–56}

Model	Definition
Community-based	Comprehensive nonhospice services are provided at home and in long-term care facilities
Home-based	Providers serve as consultants, comanage patients with primary care/other specialty team, or assume principal management of patients
Hybrid	Comanagement of patients using specialty palliative care and primary care or other service lines delivered via telehealth and/or in person
Embedded	In-person specialty palliative care offered at an existing practice (such as oncology or pulmonary clinic); sees patients and serves as a resource for providers and staff
Telehealth	Technology-driven services to address unmet needs of patients, caregivers, and providers, such as palliative care and/or hospice teams

Community-based palliative care

Community-based palliative care provides comprehensive nonhospice services to people with serious illnesses living at home and in long-term care facilities.⁵⁷ This model of care delivery is largely missing in the United States and is nearly absent in rural areas.⁴⁶

In a 2004 demonstration project conducted in rural New Hampshire, Bakitas and colleagues proposed a community-based palliative care model, Project ENABLE (Educate, Nurture, Advise Before Life Ends), in which a palliative care nurse provides coaching to patients with advanced cancer and their caregivers.⁴⁹ The model has been further adapted with a focus on telehealth delivery and has been implemented in the southeastern United States and in Turkey and Singapore.^{48, 58–60}

Bull and colleagues offer insight into how Four Seasons, a nonprofit organization that provides community-based palliative care services in western North Carolina, improved the sustainability of its care delivery model.⁵¹ In 2008, the program’s financial losses were nearly $400,000 per year (while serving an average of 305 patients per day). Four Seasons identified and implemented strategies to address the program’s inefficiencies; by 2011, its financial losses declined 40% (while serving an average of 620 patients per day). However, Bull and colleagues note that community-based palliative care faces ongoing challenges related to reimbursement, workforce shortages, and health care fragmentation.

Home-based palliative care models

Home-based palliative care models vary widely, with providers serving as consultants, comanaging the patient (concurrent care), or exclusively managing all patient needs. These models enable care across the continuum of serious illness. Availability of support varies widely, with some programs providing 24-hour, seven-day-a-week coverage. However, home-based care delivery models rely predominantly on fee-for-service reimbursement and are structured differently from hospice models of care. They do not provide additional services, such as a care aide, a social worker, or physical/occupational rehabilitation.

Hybrid palliative care models

Hybrid palliative care models are being newly formed and are therefore less well defined, but seem to align with the model of comanagement between palliative care and primary care providers.⁵⁰ Services are provided via telehealth and/or in person. Most hybrid models are found in acute care settings, with the primary care team consulting palliative care for recommendations on symptom management, establishing goals of care, and advance care planning discussions.⁵⁰

In embedded palliative care

In embedded palliative care, specialty palliative care services are provided on-site at an existing practice such as an oncology or pulmonology clinic. This model of care delivery can reduce health care utilization and expand primary care providers’ palliative care skills to help address patients’ and families’ unmet needs.^{52, 54, 55}

Telehealth

Telehealth use increased exponentially during the COVID-19 pandemic and filled a void in palliative care delivery, particularly in rural communities.⁵³ The primary goal of palliative care telehealth models is to deliver palliative care services to more patients and caregivers and help primary care and specialty providers and hospice organizations fill gaps in service delivery. For example, a program in rural Nebraska provided pediatric palliative care telehealth visits to children with cancer who were receiving hospice care from an agency that did not have any pediatric-trained providers. The program addressed the needs of the patients and their families as well as those of the hospice team, given their limited knowledge of and exposure to pediatric palliative care.⁵⁶

NURSES AS ADVOCATES

Rural communities have a right to access high-quality palliative care.⁶¹ Nurses must partner with interdisciplinary colleagues and rural communities to advocate for improvement in health equity. Voted in a Gallup poll as the most honest and ethical professionals for the 22nd consecutive year, nurses are the largest segment of the health care workforce and a powerful voice.^{62, 63} Palliative care should be readily available, person centered, and wholly integrated across the lifespan for individuals and caregivers with serious illness living in rural areas. We can structure our care and approach using the CARE framework as we work to improve access to care, particularly palliative care, and enhance the quality of life of rural communities.