by Candi Helseth
It’s a fact of life that everyone dies. When people know that they are going to die, most (90 percent of Americans, according to a Gallup Poll), would prefer to die in their homes. The hospice movement has helped make that possible for thousands of terminally ill patients since 1974.
Hospice care embraces a team approach, relying on physicians, nurses, other medical professionals and community volunteers to provide care primarily in patients’ homes when those patients are in the final stages of a terminal illness.
There are more than 4,500 hospice programs nationwide, with 39 percent defining themselves as rural and 40 percent defining themselves as both rural and urban.
Medicare provider numbers indicate that hospices began serving rural areas in the 1980s. However, according to Judi Lund Person, the National Hospice and Palliative Care Organization (NHPCO) vice president of regulatory and state leadership, “Geographic barriers like mountains, rivers and weather may define ‘rural’ even more than distance or population density. Many urban programs also serve rural people so it’s difficult to break down the number of rural people nationwide that have access to hospice services.”
Program Models Vary for Rural Areas
Madrone Hospice is an example of a successful rural hospice program. For 23 years, Madrone has served an area covering 6,000 square miles of Siskiyou County in northern California.
“Madrone Hospice is very rural,” said Audrey Flower, executive director. “We travel a wide geographic distance, all of it on mountain roads going 50 to 75 miles in all directions. Since 1995 (when they began tracking patients), we’ve served 1,600 patients.”
Hosparus (The Community Hospices of Louisville (KY), Southern Indiana and Central Kentucky) is an example of a hospice that serves both rural and urban patients. Of the more than 4,000 patients it serves each year, 83 percent live in urban areas and 17 percent in rural areas. Professional caregivers often drive 46 to 60 minutes to make home calls in the 23-county service area.
Hosparus’s southern Indiana program began services in 1978, just four years after the country’s first hospice program opened in New Haven, Conn. Hosparus is a nonprofit organization created when three separate programs in central Kentucky and southern Indiana merged into one entity.
“We weren’t the first, but Hosparus was early in the hospice movement,” said Senior Communications Manager Stephanie Smith. “We had some concerned citizens who knew of the hospice movement in England. A nurse and Catholic sister in Louisville had been to England and spent time with founders in the hospice movement. They brought that knowledge back and taught other nurses how to minister this care.”
Hosparus continued adding rural communities throughout the 1990s. “Rural people want to remain in their homes, and they are more comfortable when they’re surrounded by family and friends,” Smith said. “They want to stay close to their loved ones and they want to be in familiar surroundings.”
Before he died, Joyce Barnett was caring for her husband, Walter, at their home in Columbia, Ky. But Walter’s pain kept him bedridden, he’d become severely depressed and the couple was falling behind on their bills. When Walter was referred to Hosparus, pain management assistance allowed him to get out of bed and resume some activity. Because Walter’s disability claim had been denied, their electricity was about to be cut off and they were afraid they were going to lose their home. A Hosparus social worker helped the couple get extensions on utility payments, and qualify for Social Security payments and Medicaid insurance coverage.
Madrone Hospice is a freestanding, independent organization that became Medicare-accredited in 1995. Hosparus is also Medicare-certified.
While the hospice concept supports keeping patients at home surrounded by support from families and communities, there are times when some terminal patients can no longer remain at home. Madrone Hospice built a hospice house in 1999 to provide an alternative homelike environment with six guest rooms and 24-hour nursing care. Family members can participate in patient care, spend the night or even move in for periods of time. Hosparus meets these patients’ needs through arrangements with long-term care facilities and hospital inpatient units.
Collaboration with other providers is a key to rural programs’ success, Lund Person said, noting that most rural hospice programs are affiliated with larger organizations such as hospitals, home health agencies and county health departments.
Hospice Supports the Whole Family
Hospice care not only includes physical support, but also emotional and spiritual support for family members or primary caregivers as well as the patient, Flower said.
“The night before we lost my husband, my stepdaughter and I panicked,” said Cynthia Garland, who was introduced to hospice care when her husband, who had been diagnosed with cancer, was referred to Madrone Hospice. “We didn’t know what to do. We called hospice and the nurse drove 25 miles at midnight just to check on my husband and reassure us. Where else do you find medical professionals you can call on 24 hours a day?”
Some studies have indicated that hospice may increase the length of an individual’s life, but the hospice philosophy is intended neither to prolong life nor hasten death, Smith said. The team-oriented approach focuses on quality of life to include pain management, physical care, comfort and counseling. The patient and family determine the extent of services they prefer.
“I didn’t realize how professional and qualified these people are, and I was so thankful they came into our home to help us,” Garland said. “I’m a pretty private person, but I never felt like it was an intrusion, just support and gentle care.
In addition to physicians and nurses, health professionals such as social workers, chaplains and therapists are generally members of the hospice team. Many hospices also offer alternative approaches to control symptoms and improve well-being. Music therapy, pet therapy, massage therapy, aromatherapy and Native American ceremonies are among options at Madrone Hospice. Hosparus has volunteer certified massage therapists who provide massage therapy upon request. “We support patients’ use of any complementary therapies that can bring them comfort at the end of life,” Smith said.
Medicare-certified hospices are required to offer grief and bereavement counseling for family members, generally up to one year afterwards. Both Smith and Flower said their bereavement programs exceed minimum standards.
“I went through months of just sitting,” Garland said. “They kept in close contact with me, regularly stopping by, always leaving the door open to counseling, but they never forced it.”
Palliative Care is Extension of Hospice
As hospice usage has increased, providers have recognized the need for medical care for chronically ill people who are not diagnosed with a terminal illness. Many hospice programs also provide palliative care services.
“One of hospice’s primary benefits is helping patients stay as pain-free as possible but there are many chronically ill people who can benefit from palliative care even though they are not terminally ill,” Flower said. “Madrone has a palliative care program for patients that don’t meet hospice criteria.”
“Palliative care is broader, and may segue into hospice care as the illness progresses,” Lund Person explained. “These patients may bridge from home health or chronic disease treatment into hospice. Licensed physicians and advanced practice nurses can bill Medicare and other payers for their professional services.”
Hospice Movement Growing
In 1982, Medicare certification for hospice was approved. Other third-party payers followed suit. With reimbursement systems strengthening hospices’ financial bases, programs have continued to open throughout the United States.
“Hospice care is available in every state now,” Lund Person said. “It may not be available in every county of every state but there are many, many states with 100 percent coverage.”
“Once a hospice family, always a hospice family,” Flower said. “Rural hospice programs are best sustained by those individuals who have received our support. They become lifelong supporters. They are our voices in the community.”
Garland confirmed Flower’s theory. “They do so much for you that it makes you want to help them.”
For more information on the subjects and organizations discussed in this article see:
• The RHIhub Topic Guide on Hospice and Palliative Care
These other RHIhub Topic Guides may also be of interest:
• Home Health
• Long-Term Care
• Informal Caregiving (no longer available)
Back to: Spring 2008 Issue