There once was a time when Americans with terminal illnesses, including those living on the frontier, were likely to die at home, surrounded by extended families. Hospice care was developed to help dying patients remain in their own homes with their families until the end of life, with the support of the specialized hospice interdisciplinary team, as most say they would want—rather than in a hospital.
But as America’s rural population ages, with fewer family members living nearby to provide their care, rural hospice programs are challenged to deliver on this promise. A variety of studies have shown that rural Americans are older and sicker and have lower incomes than urbanites. And according to analysis in the Medicare Payment Advisory Commission’s 2018 report to Congress, they have less access to hospice care. In 2016, 51 percent of Medicare decedents in urban areas utilized hospice services, versus 40 percent in rural counties not adjacent to urban counties and 34 percent in frontier regions.
Low population density, long windshield times to reach patients’ homes, difficulties recruiting staff to provide the care, and reimbursement that is not keeping pace with rising costs of labor and other expenses are all part of the challenge for rural hospices. They struggle financially, says a 2015 Policy Brief, “Perspectives of Rural Hospice Directors,” from the Rural Health Reform Policy Research Center. They believe they are providing the same service and quality but at higher costs than their urban counterparts, yet Medicare pays hospices in rural areas lower regionally adjusted payment rates.
They also describe unnecessary bureaucratic hurdles that contribute to making this task harder, although legislation to ease at least one of the bureaucratic barriers is now being scored by the Congressional Budget Office in anticipation of introduction into Congress this year.
“In some rural communities, the population is aging faster than we can fathom,” says Angela Sells, Senior Vice President for Clinical Operations with AseraCare, a national hospice company with 50 sites in 18 states. “It can be scary out there for this aging population living on the frontier at the end of their lives.”
But the picture is not all dark, say those on the front lines of providing hospice care in rural areas. Often rural communities are able to mobilize resources and people who are eager to help their neighbors. Traditional rural values emphasize taking care of your own and making do with what you have. “People don’t want to leave their homes, and there’s a strong sense of community and reliance on neighbors,” says Rochelle Schaffer, home care and hospice director for Sanford Health in Bismarck, N.D., and president of the 11-member North Dakota Hospice Organization. “Most of these patients have lived here all of their lives. They know that stuff happens.”
Creative Approaches to Staffing
Brooke Borer, Area Director of Hospice Operations in five heartland states for the for-profit AseraCare chain, supervises eight largely rural hospice offices in Nebraska. Her own grandfather died 1-1/2 years ago at home in rural Nebraska. “We could not find private caregivers to take care of him. If it wasn’t for hospice care, what would he have done?” she relates.
“We have one large, rural Nebraska county that is 1 hour and 50 minutes from our closest hospice office in O’Neill, population 3,705, and from our closest full-time registered nurse. They implored us to extend our services to their county. We had to get really creative and work with the local community to identify staff that could fill in. They are employed by us and go through our hospice training, but they work only as needed when there are patients in their area,” she says.
“A lot of our patients are left at home with a family caregiver who may be an equally aged spouse,” Borer says. “With education and training provided on the job by the hospice team, they are better prepared to handle the challenge. And their own grieving process can be less difficult because they know they did the right thing for their loved one.”
What is Hospice?
Hospice care has been a Medicare-covered benefit since 1984, and Medicare represents about 85 percent of hospice caseloads and hospice reimbursement. Medicare pays hospices an all-inclusive daily rate based on the level of care needed by the patient. Out of that per diem, the hospice team is responsible for providing essentially all of the care needed to manage the patient safely and comfortably, including the core team of nurse, physician, social worker and counselor, along with ancillary staff, pharmaceuticals, medical equipment and supplies.
“Hospice is not only for the patient who is dying, to minimize their suffering. For the family left behind, hospice provides significant grief support”
Team members visit on an intermittent basis, with after-hours availability on call, and a family member typically plays a major role in meeting the patient’s day-to-day care needs. If patients live alone or can’t be managed safely in their homes, the hospice team may follow them into a nursing home or assisted living facility and provide services as if that were their home. Some hospices have opened freestanding hospice facilities, but these are hard to finance and the exception rather than the rule for U.S. hospices.
Hospice-eligible patients are assessed as having a terminal illness with a prognosis of six months or less to live. They give informed consent to care that is focused on comfort, not cure. A total of 4,382 Medicare-certified hospices, two-thirds of them for-profit companies, served 1.43 million Medicare beneficiaries in 2016—but not without some controversy.
The Office of Inspector General’s 2018 report, “Vulnerabilities in the Medicare Hospice Program Affect Quality Care and Program Integrity: An OIG Portfolio,” identified concerns such as admitting and billing for patients who are deemed ineligible for hospice care. In some cases, as reported in the Washington Post, Huffington Post, Kaiser Health News, and elsewhere, hospices failed to provide promised—and required—services such as visits at the very end of life or access to 24-hour emergency response.
Meanwhile, a related supportive service called palliative care has emerged as a complement to hospice care for seriously ill patients who don’t have a terminal prognosis or aren’t yet ready to stop pursuing curative treatments. Most U.S. hospitals today have an inpatient palliative care consultation service but palliative care in community settings is not as widely available.
Three states, North Dakota, Washington and Wisconsin, were selected by Stratis Health, a Minnesota-based health care quality improvement organization, for participation in the Rural Community-Based Palliative Care Project. Participants have done environmental palliative care assessments, with asset and gap analysis, and are bringing together community-based interdisciplinary teams from multiple agencies to increase access to palliative care in a number of rural communities.
A 26-Mile Radius
Kim Huffington is the hospice manager at Fairbanks Memorial Hospital in Fairbanks, Alaska, population 31,677, seven hours by car north of Anchorage. “We are the only hospice in our area. We cover a 26-mile radius around Fairbanks, encompassing most of the region’s population and most of the roads. But even within that radius, there are some very isolated cabins. Sometimes we require family members to meet us at the end of the plowed road and drive us in to the patient’s home,” she says.
Hospice is a relatively new concept in Fairbanks, with the hospital’s program open since 2012. But Huffington believes everyone has the right to have their needs met at the end of their lives. “We have many of the same problems as in urban areas. We work with the local homeless shelter and we need to pay attention to drug diversion issues,” she says. But there are other issues unique to Alaska and its rural setting. Financially, the hospice, with a current patient census of 33, is challenged by Medicare’s stagnant reimbursement rates. “We are also limited by lack of experienced hospice staff in this community.”
Other parts of Alaska are only accessible by airplane, boat or snowmobile. “Our staff can’t get out there. We have worked with native medical services in some remote villages, providing education in symptom management and end-of-life care. We have also talked about telemedicine links, but we’re still in the exploratory phase,” Huffington says.
“But it’s not all doom and gloom. We practice in a beautiful setting, and the Fairbanks community is very giving. They take care of their own—that’s what you have to do when you live someplace this remote. We also have 50 hospice volunteers and a local foundation that helps support special patient needs we identify.”
The challenges of providing hospice care in rural areas start with the logistics of covering large expanses of territory and resulting time spent behind the windshield, not just for the nurse and other team members but for visits by on-call staff after hours when patients are in crisis. Efficiencies and economies of scale are just not possible when the patients live so far apart.
Long hours, lack of support, frequent on-call assignments and other challenges imposed by geography contribute to staff burnout. Company cars with four-wheel drive may be indispensable in areas that get a lot of snow, and sealed “comfort kits” of common hospice medications are often left in the home in anticipation of emergency needs that might arise in the middle of the night.
Rural hospices increasingly use technology, from cell phones to encrypted remote access to patients’ electronic health records (EHRs). But bandwidth and connectivity aren’t always sufficient. In some locales, hospice nurses have become adept about where to rely on cell service to confer with the office and connect with the EHR. Other staff may visit the office infrequently, staying in touch with the team electronically and attending staff meetings online.
Some rural hospice leaders have expressed interest in telemedicine as a way to supplement in-person visits with video encounters for more frequent medical assessments and to offer peace of mind to patients and families. However, this approach has not yet been widely adopted. One exception is a “telehospice” research study launched in 2017 by the University of Kansas School of Medicine with Hospice Services and Palliative Care of Northwest Kansas, a rural hospice based in Phillipsburg, to test the use of mobile tablets and secure cloud-based video conferencing to enhance rural hospice care.
The agency covers a 15,000-square-mile service area with a population under 60,000. “We’re adding so much service with telehospice, tying in adult children, getting staff to do things they couldn’t do before, such as facilitating virtual family meetings,” says the hospice’s director, Sandy Kuhlman. These virtual encounters supplement, rather than replace, professional visits to the home, but can give a powerful appreciation for what’s really going on with the patient. “Our bereavement counselors and medical director can now meet all of our patients,” Kuhlman says.
Rural hospices also feel constrained by the Medicare’s rules and regulations. For example, rural health clinics cannot bill Medicare Part B, so if their patient enrolls in hospice care, the provider in the clinic can’t be the patient’s designated attending physician or receive payment from Medicare for providing their medical care.
The Rural Access to Hospice Act, which failed to pass the 2017-18 Congress but has been reintroduced this year, would allow physicians in Rural Health Centers and Federally Qualified Health Centers to bill Medicare separately for visits to patients enrolled in hospice care. Critical access hospitals also have Medicare requirements that make it financially disadvantageous for them to refer patients to the local hospice and to work with the hospice for the provision of inpatient hospice care.
Federal hospice regulations require an in-person, face-to-face assessment visit by a hospice medical director, physician or nurse practitioner when the patient’s hospice eligibility comes up for reevaluation at the 91st day of service. But rural hospices may employ a very part-time medical director for whom driving two hours or more to make an in-person visit can be burdensome. Some advocates have called for a provision that would allow for a virtual face-to-face via telemedicine. Adds Schaffer, “Wouldn’t it be nice if some separate allotment could be made to hospices that serve rural areas—a kind of ‘critical access hospice’ provision?”
Why Is It Important?
“Hospice is not only for the patient who is dying, to minimize their suffering. For the family left behind, hospice provides significant grief support,” says Kristen Husen, home care and hospice director for CentraCare Health in St. Cloud, Minn., which serves a number of small towns 50 miles or more from its home base. “It’s not fair to ask a wife or daughter or son to be the nurse for their loved one, when they just want to be a wife or a daughter or a son. So having a professional team come out to help at this time is huge.”
“We wouldn’t want to limit the options that could allow rural patients to leave this world in the setting of their choice, in comfort and with the best possible care and support,” Sells adds. “It’s also an issue of fairness, if a segment of the population is not able to access their Medicare benefits for hospice care—especially if that is due to a regulatory hitch that’s easy to fix.”