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 Pines, 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.’?”