Eleanor Browning lived a singular life, traveling into her 80s to places like Bhutan and Afghanistan. In 2007, at age 96, she also died a singular death, and in so doing, offered a compelling case for what hospice care aims to be for people nearing the end of life.
A year before she died, when she’d become frail and legally blind, her daughter, Pam, moved her out of an assisted living facility and into her own Chevy Chase, Md., home, quitting her job to become her mother’s full-time caregiver. But Browning’s health continued to flag: She fell twice and had trouble swallowing. Her heart rhythm became irregular, her blood pressure spiked and she suffered several small strokes. As her dementia worsened, she spoke only a few sentences a day. After a series of trips to the emergency room led to aggressive, invasive treatments, a doctor gently suggested that Pam call hospice. She did. Within days, a team of doctors, nurses and home aides from Montgomery Hospice began providing medical, emotional and practical home-based care and support for Eleanor Browning and her family right up through her peaceful death.
The Brownings’ experience illustrates the hospice concept at its best—a joint venture between family and an interdisciplinary team of medical professionals. Hospice teams include doctors, nurses, social workers, home aides, chaplains and sometimes physical therapists and nutritionists, who work with the whole family, not just the terminally ill patient. Now, prompted by new Medicare rules, the hospice industry has launched a major effort to see that all hospice patients get the same high-quality end-of-life care that the Browning family received.
Hospice care, which can be delivered at home or in a hospital, nursing home or other facility, focuses on giving comfort to terminally ill patients. Traditionally, hospice has accepted patients who are likely to die within six months and wish to stop seeking a cure for their illness. Recently, however, some hospices have begun to offer “open access” and “transitional” programs that allow certain patients to continue disease-fighting treatments, such as chemotherapy, while in hospice care. Those bridge programs can ease a family’s transition from curative to palliative care as their relative nears death.
For most hospice patients, who receive care for a few weeks or months before dying, hospice is a one-way street. But Art Buchwald’s high-profile case spotlighted the exceptions. His kidneys failing, the humorist entered hospice in February 2006 and left five months later to resume writing and spending time with friends and family before he died in January 2007. Almost 16 percent of hospice patients leave before dying, say experts. Some leave out of dissatisfaction with staff or in search of new treatments; some return when their health deteriorates.
A competitive $10 billion a year industry, hospice began in the United States in the 1970s as a largely volunteer movement—a reaction against hospitals’ costly reliance on technology to prolong life for those terminally ill. In 1983 Medicare established a hospice benefit covering home-based care for the dying and greatly expanding hospice’s reach. Today, state Medicaid programs and many private health plans cover hospice care. And for-profit hospice centers—both small, family-owned facilities and large, publicly traded chains—are now the fastest-growing segment of the industry.
The profile of many hospice patients has changed, too. In the '70s and '80s, cancer was the disease that brought most patients to hospice. Now, just 41 percent of hospice patients have cancer. The rest have other chronic diseases, such as congestive heart failure and dementia, according to the National Hospice and Palliative Care Organization (NHPCO), an industry group. Seven out of 10 hospice patients die at the place they call “home”—whether that’s a private residence or a nursing or residential facility; the rest, who often have more complex medical needs at the very end, die in inpatient hospice or hospital units.
Hospice generally earns enviable satisfaction rates. Hospices’ own surveys have found that more than 98 percent of bereaved families would recommend hospice to a family member or friend with a terminal illness. Yet, not every case goes smoothly. Those same surveys have also cited problems: lapses in pain control, for instance, or unwanted hospitalizations; such errors are particularly traumatic when a loved one is dying. “It boils down to patient care,” said Claire Tehan, a California-based consultant who founded TrinityCare, a well-regarded Los Angeles hospice. “There is hospice care being delivered that doesn’t meet the high standards that we would hope everyone would achieve.”
So, like other segments of U.S. health care, hospice has embarked on a major drive to improve and evaluate the quality of the medical, psychological and spiritual care it provides. Some of the industry’s increased emphasis on quality comes in response to new regulations issued by Medicare, which pays nearly 84 percent of all hospice fees. The new rules, which took effect in December, require hospices to keep better records and do a better, faster job of providing services such as pain control, home assistance, respite care and social worker assessment.
But even months before the new rules were issued, many hospices had begun exploring ways to improve services. The major trade industry groups held seminars and conferences where hospices could learn from one another. One hospice in Charlotte, N.C., found that it could speed up admissions and cut response time by improving staff training and increasing phone and fax coverage in off-hours. Another, in Illinois, learned how to minimize distress and confusion for families by explaining clearly what to expect when their loved one was in the final phase of dying.
Unaffected by the new rules, Medicare payment rates to hospices (just under $140 a day for routine care, regionally adjusted) could become a sore point. Some policymakers have advocated a broad reappraisal of how Medicare pays hospices, now that for-profit hospices make up almost half of the hospice industry and some frail patients are staying under hospice care for many months. But no major payment change is imminent.
From the perspective of the patient and family, probably the most visible change to hospice is a new emphasis on clear communication and timely response, says Judi Lund Person, vice president for quality at the NHPCO. For instance, under the new Medicare rules, once a family signs up for hospice, a registered nurse must assess the patient’s and family’s needs within 48 hours. Within five days, the hospice must complete a comprehensive assessment of ways in which home aides, volunteers, social workers, chaplains and others can help.
This kind of rapid response is essential to families in distress. “I was confused and upset. I didn’t know what to do,” said Jane Anaradoh, a psychiatric nurse in her 40s who was working overnight shifts in a hospital, raising two kids on her own in Hyattsville, Md., and trying to care for her mother, Grace, a Nigerian immigrant with thyroid cancer. A friend suggested they call Capital Hospice, in Northern Virginia. A nurse was at their door by 8 the next morning; a doctor, social worker, home aide and volunteer followed within days. The hospice helped Jane relieve her mother’s pain and nausea, and offered other assistance. Grace’s slow-growing cancer stabilized, and the hospice discharged her—a rare but not unheard-of occurrence.
In Seminole, Fla., Anna Muir wanted to personally help Ray Lanier, 64, her partner of 17 years, through the last stages of head and neck cancer. With the help of hospice, Muir was able to handle many of Lanier’s needs at home. When Lanier moved in his last few days to a serene inpatient room at the Hospice of the Florida Suncoast in Pinellas Park, Muir was by his side, sharing some humor: Muir promised to take Lanier’s ashes home and put them on the mantel, next to his favorite fishing hat and the TV remote.
For Eleanor Browning, hospice’s physical and emotional support allowed her to achieve a new level of closeness with her daughter, Pam. Previously reserved about showing affection, she changed in her last year—and their relationship changed as well. “Every night, I told her that I loved her,” Pam remembers. “And she told me, ‘I love you too.’ ”
Joanne Kenen, a health policy writer at the New America Foundation, received a Kaiser Family Foundation media fellowship to write about hospice care.
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