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. 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. It helps patients and their families live every moment to its fullest.
Palliative care, also called comfort care, supportive care, or symptom management, provides treatment of symptoms or suffering at any stage of a serious illness. It can be integrated into any healthcare setting and delivered by all healthcare professionals with support from a palliative care specialist.
According to the National Advisory Committee on Rural Health and Human Services' Rural Implications of Changes to the Medicare Hospice Benefit, rural Medicare beneficiaries may have limited access to hospice 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.
|Rural, adjacent to urban||17.5||46.9|
|Source: Table 12-2, Report to Congress, Medicare Payment Policy, Hospice Services, MedPAC, March 2019.|
According to the Hospice Services chapter in the 2019 Report to Congress: Medicare Payment Policy, as of 2017 there were 878 rural hospices, down from a peak of 945 in 2007, with a decline of 2.6% from 2016 to 2017 alone. 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 2017, 20% of hospices in the United States were located in rural areas.
Frequently Asked Questions
- What types of services do hospice and palliative care provide?
- What challenges are faced by rural hospice and palliative care providers?
- Who offers hospice and palliative care in rural areas and in what settings are they provided?
- How are volunteers used by rural hospices?
- What strategies can help make a rural hospice service financially viable?
- Who is included in rural hospice and palliative care teams?
- How do rural hospice providers compare on quality of care and patient satisfaction measures?
- What challenges are faced by the rural hospice and palliative care workforce?
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. It provides medical, emotional, and spiritual comfort.
According to the MLN publication Creating an Effective Hospice Plan of Care, all CMS-certified hospice agencies must provide a plan of care including some or all of the following, depending on the patient's condition:
- Medical care provided by doctors, physician assistants, and nurses
- Medications for pain relief or control of symptoms
- 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
- Medical supplies and equipment
- Homemaker services
Hospice team members can be reached at all times, to answer questions and to visit patients when needed. Intermittent nursing visits are scheduled in order 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 whose conditions improve may choose to suspend hospice care for a time and may resume services later on, if they wish. Reactivation of hospice benefits is allowed by Medicare, Medicaid, and most insurance companies. Hospice also offers bereavement services for family members and caregivers in the year following the patient's death.
While palliative care is an important component of hospice care, it is also given to patients who are not necessarily expected to die within a few months, though they may have serious illnesses. 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, as a way 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
Hospice and palliative care may also include provision of medical equipment and supplies that are related to the patient's diagnosis, such as hospital beds and oxygen.
What challenges are faced by rural hospice and palliative care providers?
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
Palliative care programs face their own challenges. As noted in the Rural Monitor article Community-based Palliative Care: Scaling Access for Rural Populations, medical professionals as well as laypeople sometimes confuse palliative care with hospice care, and mistakenly assume that palliative treatment is appropriate only for people who are nearing the end of life. The same article notes that although hospice care is covered by many insurance plans as a benefit, palliative care typically is not.
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 – This is the most familiar rural hospice model, usually organized by volunteers and health professionals. These hospices may serve one or more rural areas.
- Home health agency-based
- County health department sponsored
Medicare's Hospice & Respite Care page notes that although hospice care typically occurs in a patient's home, it can also be provided in an inpatient facility.
Rural Implications of Changes to the Medicare Hospice Benefit compares rural and urban hospice ownership status and facility type (see Table 1 below). In rural areas, there are more government-owned hospices, more hospital-based facilities, and fewer freestanding hospices. The report states that hospital-based hospice facilities are more prevalent in rural areas than in urban, which may be due to hospitals in many rural areas being the only source of healthcare.
Hospice care and associated palliative care are often provided at home, as most patients prefer to remain in their own homes at the end of life. According to the FY 2019 Hospice Wage Index and Payment Rate Update, Medicare can provide reimbursement for up to 24 hours a day of nursing care during periods of crisis, if the patient requires this level of care in order to remain at home. In order to qualify for the continuous home care rate, a minimum of 8 hours of nursing care, or nursing and aide care, must be furnished on any given day.
Additional hospice services may be provided in hospitals, nursing homes, long-term care facilities, and private hospice centers. According to The Financial Importance of Medicare Post-Acute and Hospice Care to Rural Hospitals, 131 Critical Access Hospitals and 156 rural Prospective Payment System Hospitals reported Medicare Cost Reports for hospice services in 2015. Uninsured rural patients and those living in remote areas may find that hospital-based hospices and palliative care units are the only facilities that can provide end-of-life care a reasonable distance from their homes.
How are volunteers used by rural hospices?
Lay professionals and community members offer a valuable service to rural hospice and palliative care agencies when they volunteer to provide direct patient care and supportive services not covered by professional hospice workers.
As stated in Providing Hospice and Palliative Care in Rural and Frontier Areas, 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 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 rural hospices that are freestanding or for-profit
- Shorter average length of stay, resulting in less income
- 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 can include:
- Becoming a non-profit 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 services:
- General Inpatient Care, for management of problems such as uncontrolled pain, nausea, or anxiety
- Routine Home Care, which takes place in a hospice or in a patient's home or home-like setting, for stable but dying patients
- Inpatient Respite Care, for short-term caregiver relief
- Continuous Home Care, to support patients and primary caregivers through brief crisis periods, lasting 8-24 hours a day
- Enrolling patients early in their prognosis
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:
- Home health aides
- Bereavement and spiritual counselors
- Social workers
The patient and his or her family are considered part of the hospice team, as well.
Medicare beneficiaries must be enrolled in Medicare Part A and must be certified by their attending provider and the hospice medical director as having six months or less to live, if their illness runs its normal course. Patients enrolled in Medicare Advantage plans currently revert back to traditional Medicare for hospice care. New payment models such as the Next Generation ACO model do include hospice care in their capitation rate.
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 which 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.
According to the Hospice Action Network fact sheet Rural Access to Hospice Act, physicians who are employed by Rural Health Clinics (RHCs) and Federally Qualified Health Centers (FQHCs) may not serve as attending physicians for patients who are enrolled in hospice. This is because attending physicians are reimbursed under Medicare Part B, but RHCs and FQHCs are instead paid a fixed all-inclusive payment for all services to Medicare beneficiaries. The document notes that, when faced with this choice, some patients decide to dis-enroll from hospice or not enroll at all, rather than leave the care of a trusted primary care physician.
How do rural hospice providers compare on quality of care and patient satisfaction measures?
According to the 2015 article Quality of Hospice Care: Comparison Between Rural and Urban Residents, rural hospice patients and their families 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
What challenges are faced by the rural hospice and palliative care workforce?
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
Last Reviewed: 3/22/2019