Terminal neglect for hospice patients

TAMPA, Fla. — The 85-year-old hospice patient was close to death.

Ying Tai Choi lay on a hospital bed arranged in the living room of her daughter’s house. A pulse oximeter pinged an intermittent warning about her oxygen levels. She heaved for breath sometimes and panted at others. Sounds of gurgling and congestion came from her throat. The skin behind her fingernails was turning dark.

“She is leaving soon,” the hospice nurse told Choi’s daughter.

Then the nurse left the house and drove away, even though the hospice had said it would provide Choi with “continuous care,” according to records.

“No relief arrived at this time,” the nurse wrote in her notes, according to state investigative documents. “Exiting the residence.”

Choi’s daughter Ching was stunned. She tried giving her mother a few drops of water, but she felt helpless.

“I kept calling hospice and they said no one is available,” Ching said. “My mother was struggling. It was terrible.”

Her mother died within an hour.

For more than a million patients every year, the burgeoning U.S. hospice industry offers the possibility of a peaceful death, typically at home.

But that promise depends upon patients getting the medical attention they need in a crisis, and hundreds of hospices provide very little care to such patients, a Washington Post investigation has found.

To better understand the quality of services rendered to terminal patients, The Washington Post analyzed the Medicare billing records for more than 2,500 outfits, obtained an internal Medicare tally of nursing care in patients near death and reviewed complaint records at hundreds of hospices.

The scarcity of care affects the patients most in need. While many home hospice patients require little more than weekly nursing visits, some encounter crises in which their symptoms — pain, breathing troubles, seizures and so on — flare up in ways that cannot be controlled without sustained attention. For those cases, hospices are supposed to be able to provide either “continuous” nursing care at home or inpatient care at a medical facility.

But about one in six U.S. hospice agencies, serving more than 50,000 of the terminally ill, did not provide either form of crisis care to any of their patients in 2012, according to an analysis of millions of Medicare billing records.

The absence of such care suggests that some hospice outfits are stinting on nursing attention, according to hospice experts. Inspection and complaint records, meanwhile, depict the anguish of patients who have been left without care.

Some were tormented by pain. Others had breathing difficulties, with some unable to get an answer about why their oxygen tanks weren’t working. And some were compelled to leave their homes, formally drop hospice services and head by ambulance to the emergency room, a notoriously difficult place for the frail and dying.

Indeed, at 445 hospices, a third or more of patients died without having seen a skilled nurse in the 48 hours before their death, according to 2012 Medicare internal statistics obtained by The Washington Post.

The trouble, in part, may be a matter of economic incentives posed by Medicare payment rates. Providing patients with “routine” levels of care, which typically includes semiweekly nursing visits, can be very profitable. But providing continuous bedside nursing care or inpatient care to needier patients can be a financial and logistical drain for small and mid-size agencies, hospice owners said.

Ching said the LifePath hospice agency told her that its nursing staff is sometimes stretched.

“When I called for help, the hospice kept saying they didn’t have enough nurses,” Ching said. “I kept thinking, ‘Then why did you take so many patients?’ “

A LifePath spokesman, Patty Klein, declined to comment on Choi’s case, citing privacy laws. Records show that the hospice provides continuous care and general inpatient care to many patients. The nurse who left Choi in the hour of her death was not one of its employees but a nurse under contract, administrators told investigators.

In a statement, officials said: “Continuous home care is provided as the need arises and as included in the patient’s plan of care. It is LifePath Hospice’s policy to support the hospice patient and family at all times, including when a patient is actively dying.”

J. Donald Schumacher, president of the leading hospice association, the National Hospice and Palliative Care Organization, said he thinks the problem is not “pervasive” and that it stems in part from a lack of regular hospice inspections.

He and some researchers believe that the majority of hospices are providing quality care. Indeed, many nurses in the field consider palliative medicine as much a calling as a job.

There is some evidence, however, that a significant group of hospices is operating outside industry norms. A Medicare statistical review shared with hospice leaders in March showed that a group of a few hundred hospices consistently ranked as outliers when aspects of their patient care and billing were measured.

“Even one case of a patient not receiving the care necessary to address pain and symptoms is one too many and is unacceptable,” said Schumacher. “But such examples, however painful to read, do not represent the majority of hospice providers or the hospice community as a whole.”

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The fact that hospices differ on how to treat a dying patient may be at least partly due to the relative newness of the service.

The hospice movement took root in the United States in the 1970s, offering a philosophical reorientation for patients who are expected to die. It shifted the focus away from trying to “cure” a terminal patient and aimed instead to make the patient comfortable at the end of his or her life. It discourages frenetic, invasive end-of-life care. Ideally, it enables the patient to die at home, an option preferred by most Americans with serious illness.

While the first hospice practitioners were often part of religious and community groups, for-profit outfits have come to dominate the industry, making up about three-quarters of the field. This is at least in part because in 1982, Congress enabled Medicare to pay for hospice services. Today, the industry takes in more than a million patients and $17 billion annually. The vast majority of those revenues come from the government.

The booming growth has occurred without the kind of oversight that governs much of U.S. health care.

Hospices are among the least inspected organizations in the U.S. health-care system, with most operating for years before an inspector calls. Malpractice suits and other legal claims against hospices are difficult to pursue, attorneys said, because for such patients, death is expected. Finally, many families may be unaware of what kind of nursing care hospices are obliged to provide, experts say.

One of the most difficult challenges for any hospice is how to handle a patient whose symptoms — such as pain, breathing difficulties, seizures, vomiting or anxiety — have run out of control. To handle such situations, hospices are required by Medicare to be able to provide either continuous nursing care at home or inpatient treatment at a medical facility such as a hospice, nursing home or hospital.

Yet about 18 percent of U.S. hospices did not provide a single day of either type of crisis care to any of their patients, according to a Washington Post analysis of the 2012 billing records for 2,560 hospices in the United States.

The absence of reported crisis care at those hospices stands in stark contrast to most others, where such care is a fairly common part of the patient experience.

About 10 percent of hospice patients get some continuous nursing care, according to a 2011 report from the National Center for Health Statistics. And about 25 percent of hospice patients receive inpatient care at a medical facility at some point during their time receiving hospice services, Medicare statistics show.

“If a hospice of any decent size provides zero days of general inpatient care, I consider that suspect,” Joan Teno, a researcher and clinician at Brown University who has spent most of her career studying the quality of care at hospices. “Sometimes patients need more help.”

The proportion of hospices reporting no such care has grown, too: The chunk of hospices that did not bill for either type of crisis care rose from 13 percent in 2002 to 18 percent in 2012, according to the statistics analyzed by The Washington Post.

The trouble that can result when patients do not receive the sustained attention of hospice personnel becomes clear in the state inspection records.

* In Branson, Missouri, for example, a hospice failed to provide documented nursing visits when patients near death were suffering, according to state inspection records.

The inspectors looked at four patients’ records at Access Hospice Care and found problems in three of them.

A patient dying of cancer had to wait two days for prescription pain medicine despite the family’s repeated calls for help. A lymphoma patient was, over the course of a week, “in a lot of pain,” “cannot stop shaking,” and not wanting to “wake up,” according to family members, but did not get a documented nurse visit during that period. A third patient whose family called with a “very important” concern, called again two days later without having received a documented nursing visit because the patient was having difficulties breathing. When the nurse did visit, it was not clear from the record whether it was before or after the patient died, according to the investigative report.

Access Hospice Care did not provide a day of continuous nursing care or inpatient care in 2011 and 2012, the last years for which records are available. Over that time, it billed Medicare for about 25,000 days of routine care.

Officials at the hospice, which is owned by Louisiana-based LHC Group, said in a statement that the deficiencies found by inspectors were corrected promptly.

“This is in keeping with our company’s policy to commit every necessary resource to continuously improve our performance,” according to the statement, which noted that the incidents happened shortly after LHC had acquired the hospice. “Since acquiring Access Hospice Care of Branson, Mo. in early 2010, LHC Group has taken steps to improve the quality of care and level of service delivered to the patients and families who have placed their trust in us.”

* At Angels of Hope hospice in Thomaston, Georgia, inspectors in 2011 looked at the records of three patients and found that the hospice failed to ensure the availability of inpatient care.

Two had an unspecified “symptom management crisis” and one of them had been injured in a fall, according to the inspection records. All three of them ended up having to go to the hospital, at least two of them in an ambulance.

The administrator of the hospice explained to investigators that they had no place to provide inpatient care nearby, according to the inspection record.

In 2012, Angels of Hope billed Medicare for more than 20,000 days of routine hospice care but did not provide a single day of continuous care or inpatient care, the Medicare records show.

“Angels of Hope does offer and provide continuous care or general inpatient care to its patients as needed,” the company said in a statement. The company noted that the same inspection found it in “substantial” compliance with Medicare rules.

* In Los Angeles, 91-year-old America Arteaga was signed up for hospice care one Friday last year. The next day, her daughter repeatedly called for a worker from Mar Vista Hospice to visit, but the hospice cited traffic problems and insurance issues, according to a lawsuit filed by the daughter. No one arrived. Her mother was in “serious pain” and died Monday morning without a visit from the hospice to administer pain medication, according to the lawsuit.

The chief executive of the hospice, Abraham Stepanian, said a confidentiality agreement in the settlement of the lawsuit prevented him from commenting.

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At some of those hospices that did not report providing crisis care, owners explained that none was required because their patients didn’t need any.

One of the largest such hospices in the country is the Heartland Hospice Services in Santa Rosa, California, a facility owned by HCR ManorCare, a company that was turned private in 2007 by the Carlyle Group, a private equity firm.

Its hospice in Santa Rosa billed Medicare in 2012 for more than 50,000 days of routine hospice care, but no patient received continuous care or general inpatient care, according to the Medicare billing records.

A spokesman for HCR ManorCare portrayed the absence of those services as a statistical anomaly.

“There really is nothing particularly unusual about a few of our agencies not having any inpatient or continuous care billings,” Rick Rump, a spokesman for HCR ManorCare, said by email. “We don’t find it surprising that a few of our agencies might not have patients who fall into these reimbursement categories.”

Other hospices that provided no crisis services offered a similar explanation.

At Alternative Hospice in the St. Louis area, executive director Mary Magill said that she’s only had one continuous-care case in eight years of business. She said her nurses provide such good care that patients do not need the more intense services.

“When my nurses are in there with a patient, they aren’t there just for a 20 minutes’ head-to-toe assessment. They go in for an hour,” she said. “We do aromatherapy, reflexology, acupressure — depending on what the patient needs. It keeps them from having anxiety and agitation. When you have anxiety, you have pain.”

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Some hospice experts were skeptical that so many hospices could go a year or more without ever providing for either continuous care or inpatient care.

Collectively, those hospices billed for more than 4.4 million patient days in 2012.

“For every hospice, there’s just going to be a certain percentage of people — not zero — whose symptoms are going to be difficult to control,” said Janet Bull, a board member of the American Academy of Hospice and Palliative Medicine and chief medical officer at the Four Seasons Compassion for Life in North Carolina. “Those people qualify for a higher level of care.”

Hospices that do not provide crisis care also draw skepticism from competitors who do.

“We’re one of a handful of hospices in South Carolina that provides a reasonable amount of continuous care,” said Todd Picou, chief executive of Hospice Care of South Carolina in Spartanburg, one of the largest in the state. “I don’t know how the others do it, but we hear about the worst providers, [who] tell the family to call after their loved one has passed.”

Moreover, a separate analysis by The Washington Post of more detailed California records from 2012 shows that patients at hospices that do not provide either form of crisis care are 30 percent more likely to drop out of hospice care — a sign that patients at those hospices may be dissatisfied.

Other records, too, indicate that many hospices offer very little nursing care in the last days of life.

For example, Medicare tracks how often a hospice sends a skilled nurse to a patient in the 48 hours preceding death.

That is a critical time for patients and families. A large majority of hospices almost always send a skilled nurse or other skilled personnel during those last two days of life, according to interviews and internal Medicare statistics obtained by The Washington Post.

But at about 12 percent of hospices, more than one-third of patients die without seeing a skilled nurse in the last 48 hours of their life. Indeed, at 34 hospices, no patient saw a skilled nurse during that time.

Medicare declined to name those hospices.

While imminent death is not considered a reason for crisis care under Medicare rules, experts said the dearth of nurse visits in the last days of life suggests, at best, a lack of attention.

Jon Blum, a top Medicare official, told a group of hospice industry officials last month that such numbers are “concerning.”

“The last two days of life are a very scary time for the family and the patient,” Teno said. “They want to know, ‘Do I give them morphine?’ ‘Do I prop them up?’ and they’re dealing with this at the same time their loved one is dying. I would want to make sure there’s a nursing visit then.”

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Economics may play a role in whether a hospice provides crisis care.

For each type of care, Medicare pays a daily rate: $150 for a routine day, $700 for an inpatient day and $900 for continuous nursing at home.

Despite the higher payments for inpatient care and continuous home care, providing those services can be costly and unprofitable, particularly for small and mid-size operations, hospice owners said.

Continuous nursing care requires hiring enough skilled nurses to schedule them around-the-clock; inpatient care requires arranging a place for patients, either by owning a medical facility or getting a contract with an existing facility. To justify billing at the higher rates, Medicare also requires detailed justifications of why such care is necessary.

Perry Farmer, the founder of Crossroads Hospice, a successful mid-size chain, said his agencies provide continuous care when necessary, but it’s a “money-loser for us… . [Financially,] it just doesn’t work out.”

Moreover, many hospices lack their own medical facility and struggle to arrange a contract with a hospital or other facility for a bed. Some hospitals refuse to sign contracts to take hospice patients because they can make more money serving other patients.

That leaves some hospices and their patients without a place to put patients who need inpatient care. Although Medicare rules require that every hospice have an inpatient facility of its own or have contracts with other medical facilities, many hospices do not, apparently without consequence, experts said.

About 16 percent of hospices lack their own facility and do not have contracts with other medical facilities, according to research by Kyusuk Chung at California State University at Northridge and his colleagues.

“For a patient that needs inpatient care, these hospices can offer no options,” Chung said.

That leaves some hospices, especially mid-size and smaller ones, in a bind. Continuous nursing care stretches their staff; inpatient facilities are unavailable.

Clarity Hospice in Baton Rouge, Louisiana, for example, billed Medicare for 25,000 routine patient days in 2012, with none for continuous care or inpatient care.

Owner Michael Cassidy said, “We weren’t really set up for continuous [care]. We weren’t large enough. We just didn’t have the manpower. We didn’t turn it down, but we didn’t promote it.”

If one of his patients went into crisis, Cassidy said, “we would take care of them” even though it might not show up as a day of continuous care.

Cassidy said the problem was that medical facilities in the region often weren’t willing to sign contracts to handle hospice patients. After about six years in the business, he built his own 16-bed facility, which is opening this year.

“When a patient went into crisis, we couldn’t find a place to put them,” Cassidy said. “You couldn’t fit a patient in anywhere… . I was tired of hearing that.”

Many other hospices are not so enterprising, however, and do not build their own facilities. About 27 percent of them did not provide a single day of inpatient care in 2012, according to Medicare billing records.

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In the fraught last days of life, shortcomings in care are magnified and, for survivors, can live on in traumatic memories.

Over the course of one week in April 2010, the family of a lymphoma patient called Access Hospice Care at various times to report that the patient was in “a lot of pain,” that the patient did not want to eat or wake up, and could not “stop shaking.”

In response, the family received phone calls from the nurse but not visits, according to the inspection records.

In early May, the patient’s caregiver called and got the answering service.

When a hospice nurse called back, the patient was unresponsive, according to the inspection report. The caller was “distraught and sobbing.”

The family had decided they bring the patient to the emergency room. They couldn’t handle the situation by themselves.

“We can’t do it anymore,” the caregiver said, and “we don’t know what to do.”

More than a year after her mother died, Ching said she is still upset by what happened.

“Everyone later said they are “sorry,” Ching said. “But what is ‘sorry’? That is just a word.”

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Washington Post researcher Alice Crites contributed to this report.