As her husband lay moaning in pain from the cancer riddling his body,
Patricia Martin searched frantically through his medical bag, looking
for a syringe.
She had already called the hospice twice, demanding
liquid methadone to ease the agony of Dr. Robert E. Martin, 66. A family
practice physician known to everyone as “Dr. Bob,” he had served the
small, remote community in Wasilla, Alaska, for more than 30 years.
But the doctor in charge at Mat-Su Regional Home
Health and Hospice wasn’t responding. Staff said he was on vacation,
then that he was asleep. Martin had waited four days to get pain pills
delivered
, but her husband could no longer swallow
them. Now, they said, she should just crush the drugs herself, mix them
with water and squirt the mixture into his mouth. That’s why she needed
the syringe.
“I thought if I had hospice, I would get the support I needed. They
basically said they would provide 24/7 support,” she said, still shaking
her head in disbelief, three years later. “It was a nightmare.”
Patricia had enrolled her husband in hospice when the
metastatic prostate cancer reached his brain, expecting the same kind
of compassionate, timely attention he had given his own patients. But
Bob Martin had the misfortune to require care during a long holiday
weekend, when hospices are often too short-staffed to fulfill written
commitments to families. The consequences, as documented through a
review of official records and interviews, were dire.
It took six days and three more calls before he
received the liquid methadone he needed. Hospice denied Patricia
Martin’s requests for a catheter, and she and her son had to cut away
his urine-soaked clothing and bedding, trying not to cause him
additional pain. The supervising hospice doctor never responded. A nurse
who was supposed to visit didn’t show up for hours, saying she was
called for jury duty.
Bob Martin died just after midnight on Jan. 4, 2014.
“It was just sheer chaos,” Patricia Martin said. “It makes me wonder
about other people in this situation. What happens to them?”
Patricia Martin goes through old photographs of her husband Robert, who died from prostate cancer in 2014. Heidi de Marco—KHN
The Martins had entrusted the ailing doctor’s final
days to one of the nation’s 4,000-plus hospice agencies, which pledge to
be on call around the clock to tend to a dying person’s physical,
emotional and spiritual needs. It’s a thriving business that served
about 1.4 million Medicare patients in the U.S. in 2015, including over a
third of Americans who died that year, according to
industry and
government figures.
Yet as the industry has grown, the hospice care people expect — and
sign up for — sometimes disappears when they need it most. Families
across the country, from Appalachia to Alaska, have called for help in
times of crisis and been met with delays, no-shows and unanswered calls,
a
Kaiser Health News investigation published in cooperation with TIME shows.
The investigation analyzed 20,000 government
inspection records, revealing that missed visits and neglect are common
for patients dying at home. Families or caregivers have filed over 3,200
complaints with state officials in the past five years. Those
complaints led government inspectors to find problems in 759 hospices,
with more than half cited for missing visits or other services they had
promised to provide at the end of life.
The reports, which do not include victim names, describe a
31-year-old California woman whose boyfriend tried for 10 hours to reach
hospice as she gurgled and turned blue, and a panicked caregiver in New
York calling repeatedly for middle-of-the-night assistance from
confused hospice workers unaware of who was on duty. In Michigan, a
dementia patient moaned and thrashed at home in a broken hospital bed,
enduring long waits for pain relief in the last 11 days of life, and
prompting the patient’s caregiver to call nurses and ask, “What am I
gonna do? No one is coming to help me. I was promised help at the end.”
Only in rare cases were hospices punished for providing poor care, the investigation showed.
Six weeks after Martin died, his wife filed a complaint against Mat
Su Regional with the Alaska Department of Health and Social Services.
The agency’s investigation concluded that the hospice failed to properly
coordinate services, jeopardizing his end-of-life care. Hospice
officials declined interview requests for this story.
Hospice is available through Medicare to critically
ill patients expected to die within six months who agree to forego
curative treatment. The care is focused on comfort instead of aggressive
medical interventions that can lead to unpleasant, drawn-out hospital
deaths. The mission of hospice is to offer peaceful, holistic care and
to leave patients and their loved ones in control at the end of life.
Agencies receive nearly
$16 billion a year
in federal Medicare dollars to send nurses, social workers and aides to
care for patients wherever they live. While the vast majority of
hospice is covered by Medicare, some is paid for by private insurance,
Medicaid and the U.S. Department of Veterans Affairs.
To get paid a daily fee by Medicare, hospice agencies face many
requirements.
They must lay out a plan of care for each patient, ensuring they’ll
treat all symptoms of the person’s terminal illness. And they’re
required to be on call 24/7 to keep patients comfortable, but because
each patient is different, there’s no mandate spelling out how often
staff must show up at the home, except for a bimonthly supervisory
visit. Hospices must stipulate in each patient’s care plan what services
will be provided, when, and by whom, and update that plan every 15
days. Hospices are licensed by state health agencies, and subject to
oversight by federal Medicare officials and private accreditation
groups.
Although many people think of hospice as a site where
people go to die, nearly half of hospice patients receive care at home,
according to industry figures.. At its best, hospice provides a
well-coordinated interdisciplinary team that eases patients’ pain and
worry, tending to the whole family’s concerns. For the 86% of Americans
who say they
want to die at home, hospice makes that increasingly possible.
But when it fails, federal records and interviews show it leaves
patients and families horrified to find themselves facing death alone,
abandoned even as agencies continue to collect taxpayer money for their
care.
Leo Fuerstenberg
courtesy of Fuerstenberg family
On duty, but unreachable
In St. Stephen, Minn., Leo D. Fuerstenberg, 63, a
retired U.S. Veterans Affairs counselor, died panicked and gasping for
air on Feb. 22, 2016, with no pain medication, according to his wife.
Laure Fuerstenberg, 58, said a shipment sent from Heartland Home Health
Care and Hospice included an oxygen tank, a box of eye drops and nose
drops, but no painkillers.
“They were prescription drugs, but it didn’t say what they were or
how to give them,” she recalled. “I just panicked. I called the hospice,
and I said, ‘We’re in trouble. I need help right away.’ I waited and
waited. They never called back.”
For more than two hours, she tried desperately to comfort her husband, who had an aggressive form of
amyloidosis,
a rare disease that can lead to organ failure. But he died in her arms
in bed, trapping her under the weight of his body until she managed to
call neighbors for help.
“That last part of it was really horrible,” she said.
“The one thing I promised him is that he wouldn’t be in pain, he
wouldn’t suffer.”
Later, state investigators determined that Heartland’s on-duty
hospice nurse had muted her phone, missing 16 calls for help. Hospice
officials did not respond to repeated interview requests.
“They never followed their protocol, and I’ve never
had anybody from there say, ‘We failed, We were wrong,’” said
Fuerstenberg, a school counselor who said she relives her husband’s
death daily. “If that had been me on my job, I’d be fired.”
Her account was among more than 1,000 citizen
complaints that led state investigators across the country to uncover
wrongdoing from January 2012 to February 2017, federal records show.
But the complaints offer only a glimpse of a larger
problem, said Dr. Joan Teno, a researcher at University of Washington
who has studied hospice quality for 20 years. “These are people who got
upset enough to complain.”
Officials with the
National Hospice and Palliative Care Organization (NHPCO), an industry trade group, said that such accounts are inexcusable — but rare.
“I would venture to say whatever measure you want to
use, there are an exponential number of positive stories about hospice
that would overwhelm the negative,” said Jonathan Keyserling, NHPCO’s
senior vice president of health policy. “When you serve 1.6 million
people and families a year, you’re going to have instances where care
could be improved,” he added.
But even one case is too many and hospices should be
held accountable for such lapses, said Amy Tucci, president and chief
executive of the
Hospice Foundation of America,
a nonprofit focused on education about death, dying and grief. “It’s
like medical malpractice. It’s relatively rare, but when it happens, it
tarnishes the entire field,” she said.
How often hospices fail to respond to families or patients is an
understudied question, experts say, in part because it’s hard to
monitor. But a recent national survey of families of hospice patients
suggests the problem is widespread: 1 in 5 respondents said their
hospice agency
did not always show up when they needed help, according to the
Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, designed by the Centers for Medicare & Medicaid Services.
“That’s a failing grade,” Teno said. “We need to do better.”
‘It’s like they just didn’t do anything’
Hospice care in the U.S. got its start in the 1970s,
driven by religious and non-profit groups aimed at providing humane care
at the end of life. Today, however, many providers are part of
for-profit companies and large, publicly traded firms. It’s a lucrative
business: For-profit hospices saw nearly 15% profit margins on Medicare
payments in 2014,
according to the Medicare Payment Advisory Commission.
Most families are happy with their experience, according to the CAHPS
survey. In data collected from 2015 to 2016 from 2,128 hospices, 80% of
respondents
rated hospice
a 9 or 10 out of 10. Kaiser Family Foundation polling conducted for
this story found that out of 142 people with hospice experience, 9% were
“dissatisfied” and 89% “satisfied” with hospice. (Kaiser Health News is
an editorially independent project of the foundation.)
Indeed, many people give hospice glowing reviews.
Lynn Parés, for instance, gushed about her experience from 2013 to 2014
with Family Hospice of Boulder, Colo. When her 87-year-old mother cut
her leg, staff came daily to treat her wound. In her last week of life, a
nurse came every day. The hospice also provided family counseling,
spiritual guidance, and volunteers who surrounded her mother’s bedside,
singing old-time songs.
“They were in constant contact with us,” Parés said of the hospice.
“It’s amazing to me how much heart there is involved in hospice care.”
After her mother died, Parés and her siblings donated part of their
inheritance to the hospice. “I can never say enough good about them.”
In 2015, the small, family-owned Boulder company was
acquired by a large regional chain, New Century Hospice, part of a
larger wave of consolidation in the field.
As the industry grows — hospice enrollment has
more than doubled
since 2000 — some companies are not following through on their promises
to patients, according to the government reports. For instance, data
show many hospices fail to provide extra care in times of crisis. To get
Medicare payments, hospices are required to offer four levels of care:
routine care, which is by far the most common; respite care to give
family caregivers a break for short time periods; and two levels of
so-called “crisis care,” continuous care and general inpatient care,
when patients suffer acutely. But 21% of hospices, which together served
over 84,000 patients, failed to provide either form of crisis care in
2015, according to CMS.
Other research has
found troubling variation
in how often hospice staff visit when death is imminent. A patient’s
final two days of life, when symptoms escalate, can be a scary time for
families. Teno and her co-authors found that 281 hospice programs, or
8.1% of hospices, didn’t provide a single skilled visit — from a nurse,
doctor, social worker or therapist — to any patients who were receiving
routine home care, the most common level of care, in the last two days
of life in 2014.
Regardless of how often they visit, hospices collect
the same flat daily rate from Medicare for each patient receiving
routine care: $191 for the first 60 days, then $150 thereafter, with
geographic adjustments as well as extra payments in a patient’s last
week of life.
Overall, 12.3% of patients on routine home care received no skilled visits in the last two days of life,
the study found.
Patients who died on a Sunday had the worst luck: they were more than
three times less likely to have a skilled visit than those who died on a
Tuesday. Teno said that gives her a strong suspicion that missed visits
stem from chronic understaffing, since hospices often have fewer staff
on weekends.
In Minnesota, Fuerstenberg’s pleas for help went
unanswered on a Sunday evening; her husband died just after midnight on
Monday. She was appalled when she received a bill for care the agency
said occurred on that day.
“When they got paid for nothing, it was like a slap
in the face,” said Fuerstenberg, who filed a complaint with Minnesota
health officials last year. She heard nothing about the case from
hospice officials and didn’t learn it had been investigated until she
was contacted by reporters for this story.
In St. Paul, Virginia, a small town in the Appalachian mountains,
Virginia Varney enlisted Medical Services of America Home Health and
Hospice, a national chain, to care for her 42-year-old son, James Ingle,
who was dying of metastatic skin cancer. On his final day, Christmas of
2012, he was agitated, vomiting blood, and his pain was out of control.
Varney called at least four times to get through to hospice. Hours
later, she said, the hospice sent an inexperienced licensed practical
nurse who looked “really scared” and called a registered nurse for
backup. The RN never came. Ingle died that night.
Varney said she felt numb, angry and “very
disappointed” in the hospice care: “It’s like they just didn’t do
anything. And I know they were getting money for it.”
“They told me 24 hours a day, seven days a week, holidays and all,” Varney said. “I didn’t find that to be true.”
An investigation by Virginia state inspectors, which
corroborated Varney’s story, revealed the hospice nurse changed the
records from that night after the fact, altering the time she reported
being at the home. The registered nurse was fired that February. The
hospice declined to comment for this story.
Patricia Martin holds an old photograph of her husband Robert, who died from prostate cancer in 2014. Heidi de Marco—KHN
A problem with few solutions
Just how often are hospice patients left in the
lurch? Inspection reports, performed by states and collected by CMS,
don’t give a clear answer, in part because hospices are reviewed so
infrequently.
Unlike nursing homes, hospices don’t face inspection every year to
maintain certification. Based on available funding, CMS has instead set
fluctuating annual targets for state hospice inspections. In 2014, CMS
tightened the rules, requiring states to increase the frequency to once
every three years by 2018.
Often, promising to do better is the only requirement
hospices face, even when regulators uncover problems. The Office of the
Inspector General at the federal Department of Health and Human
Services has called for stricter oversight and monitoring of hospice for
a decade, said Nancy Harrison, a New York-based deputy regional
inspector general. One problem, she said, is there is no punishment
short of termination — barring the hospice from receiving payment from
Medicare— which is disruptive for dying patients who lose service.
CMS records show termination is rare. Through routine inspections as
well as those prompted by complaints, CMS identified deficiencies in
more than half of 4,453 hospices from Jan. 1, 2012 to Feb. 1, 2017.
During that same time period, only 17 hospices were terminated,
according to CMS.
In Alaska, Patricia Martin filed a complaint against
Mat-Su Regional with the Alaska Department of Health and Social Services
six weeks after her husband’s death. An investigation concluded that
the hospice
failed to properly coordinate services,
jeopardizing his end-of-life care. Hospice officials declined to
comment about his case, citing patient privacy rules. In an email,
Mat-Su administrator Bernie F. Jarriel Jr. said the hospice
“strengthened our policy and procedures” as a result of the
investigation, and “members of our caregiving team have been re-educated
on these practices.”
In Minnesota, officials with the local Heartland Home Health and
Hospice agency referred questions to its corporate owner, HCR ManorCare
of Toledo, Ohio. Officials there did not respond to multiple requests
for comment about Leo Fuerstenberg’s care. CMS documents indicate the
nurse who missed 16 messages “was re-educated on responsibilities of
being on call.”
In a 2016 study, the OIG’s Harrison and colleagues
called for state surveyors to better scrutinize the care plans hospices
outline for their patients. And they recommended that CMS create a range
of different levels of punishment for hospice infractions, such as
requiring in-service training, denying payments, civil fines, and
imposing temporary management.
CMS has no statutory authority to impose those
alternate sanctions, said spokesman Jibril Boykin. But it did work to
increase transparency in August by launching a consumer-focused website
called
Hospice Compare
that now includes hospices’ self-reported performance on quality
measures, and, next year, will include family ratings of hospices.
Until that happens, there’s little information available for families
trying to pick a hospice that will show up when it counts. Tucci, of
the Hospice Foundation of America, suggests that families of ill or
frail relatives consider hospice options before a crisis occurs. The
agency recommends
16 questions families should ask before choosing a hospice.
Back in Alaska, Patricia Martin said she’s still
waiting for officials with Mat-Su Regional Home Health and Hospice to
answer questions about her husband’s poor care. She urges other families
enrolling patients in hospice to be vigilant.
“It is my hope that no other family or patient will
ever have to go through the nightmare that we did,” she said. “If they
promise you they’re going to do something, they should do it.”
This story was produced in collaboration with Kaiser Health News, an editorially independent program of the Kaiser Family Foundation. JoNel Aleccia and Melissa Bailey are Kaiser Health News reporters
Correction: An earlier version
of this story incorrectly described the drug Patricia Martin requested
from hospice. It was liquid methadone, not liquid morphine.
Full Article & Source:
‘No One is Coming:’ Investigation Reveals Hospices Abandon Patients at Death’s Door
