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An old red-and-white country house nestles into the woods just off Southwest Capitol Highway. A rose-covered trellis beckons visitors down the path toward the terrace sheltered by azaleas and blossoming fruit trees. The front door opens and two nurses bring out six people in hospital beds and wheelchairs, their oxygen tanks in tow. Some are lively as the sun hits their faces; others lie comatose. One woman cries, saying she never thought she'd be outside again. As the nurses tuck clematis blossoms into radiation-thinned hair, the patients sip sodas and soak up every moment of one last spring. Welcome to Hopewell House, Oregon's only free-standing residential hospice. Round-the-clock nurses, certified nursing assistants and volunteers give patients and their families medical, emotional and spiritual support. The smallest wish is granted, whether it be for a loaf of freshly baked bread or a day pass to attend another patient's funeral. Nurse Jackie Murphy remembers a young husband helping his wife through death as if she were giving birth. "He was like her Lamaze coach at her bedside and coached her through this even though he didn't want her to die," she says. At Hopewell, patients and their families find strength in being around other people who are facing death. When someone dies, a special hand-made "passage quilt" is often placed across the body, leaving the head and shoulders uncovered. Family members and staff toast the deceased with sparkling cider, sharing stories, laughter and tears. "If I were facing death and we were not able to have a caregiver at home, I would prefer to die at Hopewell House," says Ann Jackson, director of the Oregon Hospice Association. "It understands what hospice is." As Hopewell patient Susan Rich--a 54-year-old librarian at Cherry Park School--remarked to her brother, Errol, shortly before her death last August, "If this is dying, it isn't so bad." Stories like these, and similarly poignant anecdotes from hospices elsewhere, will no doubt be raised in the coming weeks as Congress sets its sights on Oregon's doctor-assisted suicide law. But for those who see this type of hospice care as an alternative to doctor-assisted suicide, Hopewell House offers a sobering lesson: A good death costs money, and nobody seems to want to pay--at least not for the kind of high-end hospice care provided at Hopewell House. Originally opened in 1987 as Hospice House, the place shut down after three years due to financial problems. In 1991, Ecumenical Ministries of Oregon, a nonprofit organization that sponsors a variety of charitable programs, reopened the hospice under the name Hopewell House. Everyone needing care was admitted regardless of ability to pay. The homeless and the well-heeled, ex-cons and executives, all received the same excellent medical, emotional and spiritual attention. Then last spring things began to fall apart. EMO took a closer look at the Hopewell House budget. It found the hospice was losing $25,000 a month. A task force was formed to determine what changes needed to be made for Hopewell to survive. After months of research and debate, the staff was cut and the admission policy changed radically. People without resources would now be admitted only if two-thirds of the hospice beds were filled with patients paying the full $250-a-day rate. "When we started the policy, we hoped it would be a short-term thing to get us through the financial crisis," says Susan Johnston, assistant director of nursing. "It's been a year now." EMO is taking a hard look at the new policy this month. If the reduction in charity care hasn't stopped the hospice's deepening debt, there's a chance the state's only free-standing hospice will be forced to shut its doors by the end of the year. Oregon, a state famous for legalized suicide, is also a leader in hospice care available to patients with a prognosis of six months or less. It is one of the reasons only a third of Oregonians die in hospitals, compared to over half of Americans in other states. Hospice association director Jackson boasts that 99 percent of our population has access to hospice care. The vast majority of that care, however, is far less comprehensive than what is given at Hopewell House. Oregon licenses 50 home-hospice teams. Visiting nurses trained in pain management work with doctors, health-care attendants, social workers, spiritual counselors and family members to help patients reach a peaceful death. They visit patients in their homes two to three times a week to provide symptom management and emotional support. Some teams are associated with medical centers like Legacy, Kaiser and Providence, while others are independent. Reimbursement for home-team services is paid by Medicare (the federal health plan for the elderly), the Oregon Health Plan (the state plan for the poor), private insurance companies and HMOs. If the burden of care becomes too much for a family, hospice teams help patients find a new "home." In most cases, this means nursing facilities and adult foster-care homes. As long as the hospice team follows the patient to his or her new residence, insurance will still cover basic costs. The family, however, is left to cover the charge for room and board, which ranges from $65 to $100 per day for foster care and twice that for nursing homes. There are several problems with this system. First, adult foster homes were not designed to provide care for the terminally ill. For example, state licensing for foster homes does not require caregivers to have the medical training needed to administer morphine for dying patients with severe pain. Oregon's 400 nursing homes, by contrast, are required to employ RNs and other trained health-care workers, which accounts for the increase in cost. Health-care professionals are careful not to criticize the foster care and nursing homes they work with, but they will concede that Hopewell is in a different league. With a staff of 40 full-time, part-time and on-call employees, there is at least one registered nurse on duty 24 hours a day. The nurse-to-patient ratio is never less than one to five (compared with one to 40 in nursing homes), and that ratio increases if a patient requires more attention. Certified nursing assistants and a stable of specially trained volunteers help the RNs deal with the physical and emotional needs of patients and their families. "Although hospice teams provide care in other residential settings, the people running those places don't have the same kind of experience with death," says Jackson. The unique care that earns Hopewell House such acclaim may also be its downfall. Because it doesn't fit into any of the categories defined by insurers and government health plans, reimbursement for care is often difficult or impossible. Hopewell admissions nurse Shirley Tindall spends most of her time on the phone, cajoling, pleading and crying with insurers, begging them to carve out benefits from plans where they don't exist. Private insurance offers the best chance, although most have a hospice "cap," which often taps out at $15,000 per patient. By the time most patients reach Hopewell, a portion of their hospice benefit has been depleted paying for home-hospice teams. If a patient is admitted, Hopewell assumes full responsibility, regardless of whether the remaining benefit runs out two days or two months before death. Hopewell's biggest financial problem is posed by the government. Medicare won't pay for a stay there because Hopewell has no home-hospice team, a federal requirement for all hospices seeking Medicare reimbursement. The Oregon Health Plan, in turn, encourages participating HMOs to contract only with Medicare-certified hospice teams or facilities, arguing that state money goes further when paired with federal dollars. As a result, only one of the health plan's 15 HMOs--Care Oregon--has a contract with Hopewell House. Hersh Crawford, director of Medicaid for Oregon, says the obvious solution is for Hopewell to start a home-hospice team and become Medicare-certified. "By choosing not to participate, they cut off a huge income stream," he says. But starting a home-hospice team poses its own problems. First, it is expensive and would take resources away from residential care. Second, it would put Hopewell in competition with the home-hospice teams that refer patients there. "This town is well taken care of by home teams," says Colleen Lyman, Hopewell's director of nursing. "We want to work with them, not against them." Currently all in-home hospice workers can follow their patients into Hopewell. Joe Croft, a nurse with Legacy Visiting Nurses Association Hospice, often accompanies patients to residential facilities, and Hopewell House has always been his first choice. "These are good people, and they do an incredible job," says the 41-year-old RN. If Hopewell became associated with a major health plan's hospice team, however, caregivers from competing institutions might not be welcome. "I'd be stopped at the door," says Croft. "Patients would lose continuity with the people they already know. That's a pretty important thing during that period of time." It may be that in the world of managed care, Hopewell House is simply too expensive to survive as an independent hospice. Some people question the ethics of spending $250 a day for the few patients who actually have access to Hopewell services. Yet if Hopewell closes its doors--which some EMO board members have advocated--the impact could be bigger than most people imagine. Hopewell's Johnston relates a story about a patient recently interviewed for television about why she chose Hopewell House over physician-assisted suicide. "What she said was not what they wanted to hear," Johnston explains. "But it was real life. She said, 'I'm here because I have really good insurance, and if I didn't, I don't know what I'd do.'" For more information about end-of-life options, call the Oregon Hospice Association at 228-2104 for a copy of The Final Months of Life: A Guide to Oregon Resources. |
