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Rural Hospice and Palliative Care

Hospice and palliative care services can improve the quality of life for rural residents of all ages who are dealing with serious illness or injury.

Hospice provides care to people experiencing terminal illness with a life expectancy of six months or less if the disease runs its natural course. It is based on the belief that everyone has the right to die pain-free and with dignity. The focus is on compassion, caring, and quality of life, not curing. Hospice helps patients and their families and caregivers live life to its fullest.

Palliative care — also called comfort care, supportive care, or symptom management — is specialized care that treats the symptoms or suffering related to an illness at any stage of the diagnosis. It can be integrated into any healthcare setting and is delivered by a team of healthcare professionals with support from a palliative care specialist, if available. Palliative care is associated with better quality of life, improved symptom management, and higher patient satisfaction. Although palliative care is a key component of hospice care, palliative care is not restricted to patients with terminal conditions. Palliative Care or Hospice Care? compares these services.

According to Stratis Health's Rural Community-Based Palliative Care: Final Report, rural residents may have limited access to hospice and palliative care. This is especially problematic since rural people tend to be older, sicker, and have lower incomes than their urban counterparts.

Use of hospice services by Medicare beneficiaries has increased since 2000 in all location types, but hospice is still used most often in urban areas.

Percent of Medicare Decedents Who Used Hospice Services
  2010 2022
Urban 45.6 50.2
Micropolitan 39.2 47.2
Rural, adjacent to urban 39.0 47.8
Rural, nonadjacent 33.8 42.1
Frontier 29.2 35.2
Source: Table 9-2, Report to Congress: Medicare Payment Policy: Hospice Services, MedPAC, March 2024.

Frequently Asked Questions

What types of services do hospice and palliative care provide?

Hospice is designed to provide care for people who are likely to die within six months, if their disease progresses at its expected pace and curative treatment has been discontinued. It provides medical, emotional, and spiritual comfort.

According to the Centers for Medicare & Medicaid Services (CMS) Medicare Learning Network (MLN) publication Creating an Effective Hospice Plan of Care, all CMS-certified hospice agencies must provide and follow an individualized plan of care for each patient. The plan of care must include all services to palliate and manage the terminal illness and related conditions of the patient. These services may include some or all of the following, depending on the patient's condition, identified needs, and goals of care:

  • Medical care provided by doctors, physician assistants, and nurses
  • Medications for pain relief or symptom management
  • Social work services
  • Dietary counseling
  • Physical, occupational, and speech-language therapy (including help with swallowing)
  • Grief and bereavement counseling for the patient and family members and caregivers
  • Mental health and spiritual counseling
  • Medical supplies and equipment related to the patient's terminal condition
  • Hospice aide and homemaker services

For hospice patients and their caregivers, a member of the hospice team can be reached at all times to answer questions and to visit when needed. Intermittent nursing visits are scheduled to assess and monitor patients' conditions and treat symptoms. This can include giving injections and setting up IV medication. Hospice professionals and volunteers can also teach caregivers and family members ways to help their loved one.

Patients can choose to disenroll from hospice care and may re-elect services later on, if they wish and are eligible. Re-election of hospice benefits is allowed by Medicare, Medicaid, and most insurance companies. Hospice also offers bereavement services for family members and caregivers for up to one year following the patient's death.

While palliative care is an important component of hospice care, it is also provided to patients who have advanced chronic diseases and other serious illnesses but are not necessarily expected to die within a few months. A terminal prognosis is not required to receive palliative care. For example, a chronic obstructive pulmonary disease (COPD) patient may receive palliative care to manage anxiety, discomfort, or insomnia related to breathing difficulty. According to the Center to Advance Palliative Care's document Serious Illness Strategies for Health Plans and Accountable Care Organizations, effective palliative care should:

  • Identify the right population needing palliative care, and adjust services as patients' needs change
  • Provide expert management of pain and symptoms
  • Help patients and their families with decision-making regarding treatment and services
  • Support family caregivers through education, counseling, and respite care
  • Provide timely and appropriate care night or day to avoid unnecessary 911 calls, emergency department visits, hospitalizations, and intensive care

Core values of both hospice and palliative care include:

  • Patient- and family-centered care
  • Holistic relief of physical, emotional, and spiritual suffering
  • Interdisciplinary case management
  • Ethical behavior
  • Service excellence

How are hospice and palliative care providers reimbursed for their services?

Medicare pays hospice providers a daily rate for all services regardless of the services provided each day. Typically, there is no out-of-pocket cost for a patient receiving hospice care, though some copayments for prescription drugs and inpatient respite care may be required. The hospice provider assumes responsibility for all care related to the patient's terminal diagnosis and related conditions. Medicare reimburses hospice providers for four different levels of care to meet the needs of patients:

  • Routine home care – the most common level of care provided, accounting for over 98% of hospice care in 2022, according to the Medicare Payment Advisory Commission (MedPAC). Routine home care is reimbursed at one rate for the first 60 days of care, and a lower rate for every subsequent day of care. Medicare makes additional payments for registered nurse and social worker visits made during a patient’s last seven days of life.
  • Continuous home care – home-based care for a short-term symptom crisis that requires eight hours of care or more per calendar day.
  • Inpatient respite care – care provided in a facility setting for up to five days to provide respite for a caregiver.
  • General inpatient care – short-term inpatient care to manage symptoms that cannot be managed in another setting.

The level of care a patient receives can change throughout their time in hospice care.

Although most states have a hospice benefit as part of their Medicaid programs, states are not required to include hospice as part of Medicaid. Medicaid hospice reimbursement is based on the Medicare hospice reimbursement rates.

Traditionally, when a patient enrolled in Medicaid Advantage (MA) elects to receive hospice care, traditional fee-for-service Medicare becomes financially responsible for hospice care and most other Medicare services, while the MA plan retains coverage of supplemental benefits. Beginning January 1, 2021, the Centers for Medicare and Medicaid Services (CMS) began to test the Hospice Benefit Component of the Value-Based Insurance Design (VBID) Model. Participating Medicare Advantage plans are responsible for all traditional Medicare services, including hospice care. Evaluation of Phase II of the Medicare Advantage Value-Based Insurance Design Model Test: First Three Years of Implementation (2020-2022) and Value-Based Insurance Design (VBID) Model Hospice Benefit Component, 2021-2022, present findings from an evaluation of Phase II of the VBID Model, including the first two years of the Hospice Component. However, in March 2024, CMS announced that the Hospice Benefit Component will conclude on December 31, 2024.

According to the 2020 NHPCO Palliative Care Needs Survey, Medicare Part B was the most common source of palliative care reimbursement. Unlike hospice care, however, there is currently not a specific Medicare benefit for palliative care. Instead, Sustainability Strategies for Community-based Palliative Care explains that palliative care teams can often bill traditional Medicare for advance care planning and care management services. Under Medicare fee-for-service payment arrangements, some palliative care team members, such as physicians, nurse practitioners, and physician assistants, can bill for visits using Evaluation and Management (E&M) codes. Licensed clinical social workers, marriage and family therapists, and mental health counselors, may also be reimbursed for mental health services provided to patients receiving palliative care services in some situations. As a result, patients experience variation in access to palliative care services. Patients may also be responsible for a copayment for these services. Palliative care programs receive reimbursement from contracts with commercial payers, hospitals or other partnerships, philanthropies and grants, the Medicare home health benefit, and arrangements with Accountable Care Organizations and Medicare Shared Savings Plans. Hawaii became the first state with a community-based palliative care Medicaid benefit when CMS approved a state plan amendment in May 2024.

Who offers hospice and palliative care in rural areas and in what settings are they provided?

According to Providing Hospice and Palliative Care in Rural and Frontier Areas, rural hospice and palliative care can be:

  • Community-based
  • Hospital-based
  • Home health agency-based
  • County health department sponsored

Community-based hospice and palliative care is the most familiar model in rural areas and is usually organized by health professionals and volunteers. These providers may serve one or more rural areas. Hospice care is typically provided in a patient's home, including an assisted living facility or nursing home, but it can also be provided in an inpatient facility. According to the Hospice services chapter in the March 2024 Report to the Congress: Medicare Payment Policy, there were 827 rural hospices in 2022, down from 871 in 2018. The report notes that although the number of rural hospices decreased, the percentage of rural Medicare decedents using hospice services increased over this period. In 2022, about 14% of hospices in the United States were located in rural areas.

Hospice services may also be provided in hospitals, nursing homes, long-term care facilities, and private hospice centers. According to Provision of Hospice Services by Critical Access Hospitals: Strengths and Challenges, which analyzes data from the 2021 American Hospital Association Annual Survey, 57% of Critical Access Hospitals (CAHs) had a hospice program in 2021. Of the CAHs that reported having a hospice program, most were system-affiliated (67%), nonprofit (65%), and had 25 beds (75%).

The North Carolina Rural Health Research Program's 2022 research brief Changes in the Provision of Health Care Services by Rural Critical Access Hospitals and Prospective Payment System Hospitals in 2009 Compared to 2017 shows that 80.6% of rural prospective payment system (PPS) hospitals and 76.3% of Critical Access Hospitals offered palliative care services in 2017, up from 57.1% and 48.5%, respectively, in 2009.

Who is included in rural hospice and palliative care teams?

Hospice and palliative care are provided by interdisciplinary teams that help patients approach the end of life with comfort, peace, and dignity.

Hospice teams often include, but are not limited to:

  • Physicians, nurse practitioners, and physician assistants
  • Nurses
  • Therapists
  • Home health aides
  • Bereavement and spiritual counselors
  • Social workers, mental health counselors, and marriage and family therapists
  • Volunteers

The patient and the patient's family and caregivers are considered part of the hospice team, as well.

Physicians, nurse practitioners, and physician assistants are recognized by Medicare as designated hospice attending providers, though nurse practitioners and physician assistants have restrictions regarding certifying a terminal illness and conducting face-to-face encounters. Clinical nurse specialists and outside attending physicians cannot be attending providers, nor are they authorized to perform face-to-face encounters. These meetings are required before the first 180 days and every 60 days thereafter. For rural hospice programs that may not have a physician or nurse practitioner available at all times, these requirements can be difficult to fulfill. After patients have been admitted to a hospice program, the interdisciplinary team formulates a written plan of care in consultation with the patient and their family and caregivers.

The Consolidated Appropriations Act, 2021 (Public Law 116-260), included a provision allowing physicians, nurse practitioners, and physician assistants at Rural Health Clinics (RHCs) and Federally Qualified Health Centers (FQHCs) to serve as attending providers for hospice patients. Historically, physicians employed by RHCs and FQHCs were unable to serve as attending physicians because RHCs and FQHCs are paid a fixed all-inclusive payment for all services to Medicare beneficiaries.

The Calendar Year (CY) 2024 Medicare Physician Fee Schedule Final Rule codified provisions of the Consolidated Appropriations Act, 2023 (Public Law 117-328), that permit mental health counselors and marriage and family therapists to enroll in and bill for Medicare services. This rule also updated hospice Conditions of Participation to allow mental health counselors or marriage and family therapists to be part of the interdisciplinary group.

How can palliative care be used in rural communities to improve the quality of life of people dealing with serious illness?

Rural populations tend to be older and experience higher rates of disability and chronic disease than urban populations. Due to the shortage of healthcare professionals in many rural areas, rural residents may not be able to easily access their providers to address emerging or worsening symptoms of an illness or address their goals of care. Palliative care teams can support these patients to alleviate not only the physical effects of their condition, but the emotional, social, and spiritual effects as well. Sustainability Strategies for Community-based Palliative Care also highlights that palliative care services can allow patients to continue to receive care in their communities.

What challenges are faced by rural palliative care organizations?

The 2020 NHPCO Palliative Care Needs Survey documents that palliative care providers face challenges like those experienced by hospice care providers. Respondents identified referrals, reimbursement, and staffing among their greatest challenges or barriers to providing palliative care services. As noted in the June 2022 Exploring Rural Health podcast episode Palliative Care — More Than Just Hospice, with Karla Weng and Pat Justis, few states have a Medicaid palliative care benefit. Additionally, while some insurers offer palliative care benefits, it is challenging for rural providers with low patient volumes to overcome administrative hurdles. As a result, many rural palliative care programs rely on grant funding and philanthropy. Rural Community-Based Palliative Care: Final Report notes that there is a projected shortage of hospice and palliative medicine providers, and that rural areas are expected to see the greatest shortages.

Palliative care programs also experience their own unique challenges. As noted in the Rural Monitor articles Community-based Palliative Care: Scaling Access for Rural Populations and Increasing Knowledge of Palliative Care in South Dakota, medical professionals as well as lay people sometimes confuse palliative care with hospice care, mistakenly assume that palliative treatment is appropriate only for people who are nearing the end of life, or not understand when palliative care services and specialists would be beneficial to a patient's care. Palliative Care — More Than Just Hospice, with Karla Weng and Pat Justis also describes how palliative care teams in rural areas may involve several different organizations and inconsistent resources and rely more heavily on passionate community champions than urban programs.

What challenges are faced by rural hospice organizations?

Providing hospice and palliative care in rural areas involves challenges such as shortages of family caregivers, financial reimbursement problems, lack of qualified staff, and travel distances.

The policy brief Perspectives of Rural Hospice Directors presents the results of a 2013 phone survey of 53 rural hospice directors and key staff from 47 states. The most important issues identified by these hospice directors were:

  • Financial issues, such as reimbursement and operating costs
  • Rural factors, including population change, economics, culture, and geography
  • Stringent federal regulations and policies, such as the requirement for face-to-face visits for recertification of hospice patients
  • Workforce issues, including challenges in recruiting and retaining staff, and staff burnout
  • Relationships with other health providers, and competition for resources and patients
  • Technology issues, including limited access to broadband and connectivity problems

The Coronavirus Aid, Relief, and Economic Security (CARES) Act (Public Law 116-136), passed in response to the COVID-19 pandemic in March 2020, permitted the face-to-face requirement to occur through telehealth technology. The Consolidated Appropriations Act, 2023 (Public Law 117-328) extended this flexibility through December 31, 2024. However, Provision of Hospice Services by Critical Access Hospitals: Strengths and Challenges, an October 2023 publication from the Flex Monitoring Team, highlights that many of the challenges identified in 2013 remain. Specifically, five key challenges emerged during seven interviews with representatives from Critical Access Hospitals that provide hospice services:

  • Community demographics, including an aging population with fewer middle-aged caregivers
  • Reimbursement
  • Difficulty finding qualified staff to provide hospice-specific services
  • Stigma around hospice care among patients and families
  • Bed availability

What challenges are faced by the rural hospice and palliative care workforces?

Perspectives of Rural Hospice Directors identifies heavy workloads, wearing multiple hats, and limited options for training as challenges for the rural hospice workforce. Other challenges for the rural hospice and palliative care workforce can include:

  • Coping with fear and anger among patients and families who are having difficulty accepting the patients' illness or injury
  • Emotional stress of caring for dying patients with whom they have close relationships
  • Safety concerns related to traveling to remote areas with poor roads and communication infrastructure
  • Lack of training programs geared specifically toward medical professionals who wish to specialize in hospice and palliative care
  • Low retention rate among rural hospice staff
  • Physical stress related to lifting heavy weights
  • Salaries that may be lower than those earned by medical professionals in other specialty areas
  • Work in some cases may be only part-time
  • Skill set for a variety of complex chronic conditions may be required
  • Scheduling such that hospice and palliative care providers may routinely work alone and without support
  • Fewer medications and less medical equipment available in rural pharmacies

Examining Barriers and Facilitators to Palliative Care Access in Rural Areas: A Scoping Review also notes that clinicians' perceived lower competency with spiritual, religious, and cultural aspects of care; a fragmented palliative care system; and unclear roles for primary care physicians are among challenges that hospice and palliative care professionals face.

How do rural hospices utilize volunteers?

According Facts and Figures: 2024 Edition from the National Hospice and Palliative Care Organization, now part of the National Alliance for Care at Home, hospice is the only Medicare provider type with Conditions of Participation that require at least 5% of patient care hours to be provided by volunteers. These community members offer a valuable service to rural hospice and palliative care agencies when they provide direct patient care, clinical support, and other general supportive services to supplement the work of hospice professionals.

Rural hospice and palliative care volunteers perform a variety of duties, such as:

  • Visiting patients and their families, providing comfort, and preserving dignity
  • Providing respite care to primary caregivers and family members
  • Grocery shopping, house cleaning, running errands, and providing rides to medical appointments
  • Supporting hospice and palliative care programs by doing routine office work and participating in fundraising and marketing

Most hospice programs have an application and interview process for screening volunteers, and training programs for those who are accepted. Topics can include:

  • Confidentiality issues
  • Listening skills
  • Signs and symptoms of impending death
  • Grief support for families

Challenges in volunteer management may include:

  • The need for ongoing recruitment efforts, given the small pool of potential volunteers in rural communities
  • Providing adequate emotional and bereavement support for volunteers
  • Providing training programs
  • The aging of the volunteer workforce in rural areas
  • Transportation problems, including travel over long distances or difficult terrain, and use of volunteers who might not have valid driver's licenses
  • Maintaining patient confidentiality in locations where most community members are acquainted with each other
  • Showing adequate appreciation for volunteers
  • Meeting the CMS requirement that hospices have at least 5% of their direct patient care hours provided by volunteers

What strategies can help make a rural hospice service financially viable?

According to Perspectives of Rural Hospice Directors, rural hospices and palliative care programs face financial challenges, which can be acute and hard to resolve. These include:

  • Inadequate Medicare reimbursement
  • Costs associated with travel
  • Regulatory requirements with financial implications
  • Higher costs due to greater numbers of direct care encounters by providers treating patients at home
  • Smaller number of freestanding or for-profit rural hospices
  • Shorter average length of stay
  • Operating costs that are not included in the per diem rate

As stated in Rural Implications of Changes to the Medicare Hospice Benefit, rural hospices face barriers in providing service. These barriers can make it difficult for rural communities to maintain Medicare-certified hospice programs, and may include:

  • Low patient volume, affecting the ability to achieve a successful scale of operation
  • Significant cost of electronic health records (EHRs) and data submissions, as well as difficulties in implementing EHR systems
  • Increase in regulatory costs
  • High infrastructure costs

Strategies to increase financial viability for hospice providers can include:

  • Becoming a nonprofit 501(c)(3) organization, which allows the hospice to accept donations, major gifts, bequests, and planned giving
  • Offering home and outpatient services in residences or home-like settings
  • Holding community fundraisers throughout the year
  • Charging a room and board rate for care in a hospice home at the routine level
  • Offering all 4 levels of hospice care: routine home care, general inpatient care, continuous home care, and inpatient respite care
  • Enrolling patients early in their diagnosis
  • Leveraging telehealth (virtual and telephonic) visits to supplement in-person visits

Leveraging telehealth to perform or supplement in-person visits could be another strategy to improve financial viability of rural hospice providers. Economics of Using Telemedicine to Supplement Hospice Care in Rural Areas describes how one hospice serving rural northwest Kansas saved over $115,000 in staff travel time and mileage reimbursement in 2018 by conducting virtual weekly interdisciplinary team meetings; virtual administrative meetings; and 123 video calls for emergent calls from patients, check-in calls throughout the week, bereavement visits, and medical director visits in addition to face-to-face care.

What strategies can help make a rural palliative care service financially viable?

Sustainability Strategies for Community-based Palliative Care, a summary of two roundtable discussions conducted by Stratis Health in 2018 with nine rural palliative care programs, highlights that in addition to Medicare and other payers not having a distinct palliative care benefit, only some members of a palliative care team can bill for direct services. This document also offers examples and resources to support rural community-based palliative care programs including traditional billing and reimbursement, grants and philanthropy, value-based contracting, and emerging opportunities such as the development of a palliative care benefit and other new payment models for rural healthcare providers. Sustainability and Value: State Palliative Care Reimbursement Strategies, a 2023 report from the National Academy for State Health Policy (NASHP), outlines strategies for state health officials to build sustainable access to palliative care in Medicaid. NASHP also tracks state actions that support and expand palliative care.

How do rural hospice providers compare on quality of care and patient satisfaction measures?

Characteristics of Hospices Providing High-Quality Care, a 2020 analysis of two hospice quality measurement tools — the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, which surveys caregivers of a patient who died in hospice care, and the Hospice Item Set (HIS) measures, which uses information and data from patient medical records to calculate seven quality measures — found that rural hospices were two- to three-times more likely to be in the top quartile of hospices on the CAHPS Hospice Survey than urban hospice providers between 2015-2017. Rural hospices were also more likely than urban hospices to be in the top quartile when looking at CAHPS Hospice Survey and HIS data combined. Similarly, the 2015 article Quality of Hospice Care: Comparison Between Rural and Urban Residents, reports that rural hospice patients and their families served by one large hospice program between September 2009-April 2010 were more likely than their urban counterparts to report high levels of satisfaction with overall care and pain and symptom management. Of the 331 rural people surveyed, only 3 patients were not satisfied with the hospice care they received. The researchers suggested that the high ratings for rural hospices may be due to:

  • Rural communities' connectedness
  • Services being delivered quickly, as providers know the patients' needs
  • Highly individualized care, provided by nurses who ensure that patients receive excellent service
  • Neighbors who are aware of patients' needs and are willing to help

Medicare.gov's Care Compare tool allows users to find and compare hospice agencies in their area in terms of the quality of patient care and caregiver experience compared to national averages.

Last Updated: 10/25/2024
Last Reviewed: 6/4/2024