By JoNel Aleccia and Melissa
Bailey Photos by Heidi de
Marco October 26, 2017
WASILLA, Alaska — 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
Martin, 66. A family practice physician known to everyone as “Dr. Bob,” he had
served this small, remote community for more than 30 years.
But the doctor in
charge at Mat-Su Regional Home Health & 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, shaking her head in disbelief, three years
later. “It was a nightmare.”
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.
Yet the hospice care
that people expect — and sign up for — sometimes disappears when they need it
most. Families across the country, from Alaska to Appalachia, have called for
help in times of crisis and been met with delays, no-shows and unanswered
calls, a Kaiser Health News investigation shows.
A KHN analysis of
20,000 government inspection records reveals that missed visits and neglect are
common for patients dying at home. Families or caregivers, shocked and angered
by substandard care, have filed over 3,200 complaints with state officials in
the past five years.
Those complaints led
government inspectors to uncover 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, KHN found.
The horrifying
reports, which do not include victims’ 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.
Using death records
and public records searches, KHN identified some victims of the worst abuse
detailed in the complaints and interviewed surviving family members.
Contacted by KHN,
Patricia Martin tearfully said she’d given up hope that anyone would take
seriously her complaints about her husband’s care. She had enrolled him 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. It took six
days and three more calls before he received the liquid methadone he needed.
Hospice denied his wife’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, saying she was called for jury duty.
Bob Martin died just
after midnight on Jan. 4, 2014. Six weeks later, his wife filed a complaint
against Mat-Su Regional with the Alaska Department of Health and Social
Services. An investigation concluded that the hospice failed to properly coordinate services, jeopardizing his
end-of-life care. Hospice officials declined interview requests.
“It was just sheer
chaos,” Patricia Martin said. “It makes me wonder about other people in this
situation. What happens to them?”
Hospice’s Holistic Promise
Hospice is available
through Medicare to critically ill patients expected to die within six months
who agree to forgo further curative treatment. The care is focused on comfort
instead of aggressive medical interventions that can lead to unpleasant, drawn-out
hospital deaths.
It’s a booming
industry 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
latest industry and government figures.
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.
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 care 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.
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 percent 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.
In St. Stephen, Minn.,
Leo Fuerstenberg, 63, a retired 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 affects the organs. 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
cellphone, 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 investigators to uncover wrongdoing
from January 2012 to February 2017, federal records show. But experts who study
hospice say many more families may be too traumatized to take further action.
The complaints offer
only a glimpse of a larger problem, warned Dr. Joan Teno, a researcher at
University of Washington in Seattle 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 over a
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 problem, 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.”
Hospice care in the
U.S. got its start in the 1970s, driven by religious and nonprofit 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 percent profit margins on
Medicare payments in 2014, according to the Medicare Payment Advisory Commission.
Most families are
happy with hospice, according to the CAHPS survey. In data collected from 2015
to 2016 from 2,128 hospices, 80 percent 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 percent were “dissatisfied” and 89 percent “satisfied”
with hospice. (Kaiser Health News is an editorially independent program 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 Parés’
87-year-old mother cut her leg, staff came daily to treat the wound. A nurse
visited every day in the dying woman’s last week of life. 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.”
Following industry
trends, the small, family-owned Boulder company subsequently got acquired by a
large regional chain, New Century Hospice, in 2015. As the industry grows —
hospice enrollment has more than doubled since 2000 — some companies are not
following through on their promises to patients.
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 percent of hospices, which together served over 84,000 patients, failed to
provide either form of crisis care in 2015, according to CMS.
While there’s no
guarantee that a given patient will need crisis care, not offering any such
care for an entire year raises a concern about “whether they’re providing
adequate symptom control,” Teno said.
“I’d be very surprised
if there wasn’t a significant proportion of those people” — at least 5 percent
— “who really needed that service,” she said.
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, who often need professional help,
Teno said. She and her co-authors found that 281 hospice programs, or 8.1
percent of the hospices studied, 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 percent
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 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 Kaiser Health News.
Left In The Lurch
In St. Paul, Va., 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
son, James Ingle, 42, who was dying of metastatic skin cancer. On his final
day, Christmas Day 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 hospice
staff changed the records from that night after the fact. The registered nurse
was fired that February. The hospice declined to comment for this story.
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 or
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, officials
at Mat-Su Regional Home Health & Hospice, which cared for Bob Martin, cited
patient privacy rules in declining to comment about his case. But “[we]
strengthened our policy and procedures” as a result of the investigation,
administrator Bernie Jarriel Jr. said in an email. “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.”
‘Misplaced Expectations’
Hospice industry
officials note that resolving hospice complaints can be difficult during the
fraught days at the end of life.
“Hospice is like any
other health care provider in that there may be misplaced expectations,” said
the NHPCO’s Keyserling.
Hospice providers must
ensure that communications are clear and understood and patients and families
must voice their concerns, he added. When that doesn’t happen, problems can
follow.
Jim Mills, 56, a
retired Navy submariner from West Liberty, Ky., is still angry about the care
his wife, Leeanne Mills, 54, received in the summer of 2016 at Mountain Community
Hospice, then run by Hospice of the Bluegrass in nearby Lexington. She was
diagnosed in 2011 with ocular melanoma and spent five years in treatment for
the rare eye cancer. When all options were exhausted, the couple recalled the
excellent hospice care given to Mills’ father and brother-in-law.
“My wife and I saw
that, so we said ‘OK,’” Mills recalled. “My wife wanted to die in the home that
she and I lived in.”
But the experience was
devastating, he said. Instead of round-the-clock care for his wife, he said the
hospice left him alone to grapple with her excruciating pain. He detailed
dozens of alleged problems with her care, ranging from a hospice nurse who didn’t
respond for five hours to a middle-of-the-night call for pain medications to
suspicions that use of a drug pump hastened her death.
“I’m in panic mode,”
Mills recalled. “I don’t know what to do. I’m no doctor. I’m no nurse.”
Kentucky state health
officials who investigated Mills’ complaint in October 2016 found “no deficient
practice,” records show. Mountain Community Hospice, run by the Kentucky agency
now known as Bluegrass Care Navigators, also disputed Mills’ version of events.
Lawyers representing the agency said in a letter that care his wife received
was appropriate and suggested that the trauma of loss may have colored his
perceptions.
“MCH treated your wife
and family with dignity and compassion throughout her hospice stay and was in
no way negligent, abusive or harmful to her or your family,” the letter said.
“Unfortunately, emotional pain and anguish for dying patients and their loved
ones are unavoidable in such tragic circumstances despite high quality and
supportive hospice care.”
Liz Fowler, the
hospice president and chief executive, said in an email to KHN, “We are
concerned when a family member has a negative perception of our care. We wish
we could improve that perception.”
But Mills said nothing
will shake his belief that his wife was treated badly in her final days.
“There should be some
clarity when a family is facing this, in whatever state it happens to be, they
should know their rights, they should know what to expect,” he said. “I want my
wife’s death and suffering to not have been in vain.”
Help For Families
In a 2016 study, the
OIG’s Harrison and colleagues called for state surveyors to better scrutinize
the plans of care 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 alternative sanctions, said spokesman Jibril Boykin.
But it did 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 & 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.”
KHN’s coverage of
end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and
its coverage related to aging & improving care of older adults is supported
by The John A.
Hartford Foundation.
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