The infrequency of inspections does not mean that hospices are operating in perfect accordance with Medicare rules. In 2007, the inspector general for the Department of Health and Human Services found that 46 percent of hospices inspected over a three-year span had been cited for a safety or patient care violation.

A HuffPost analysis of more recent data, from the years 2009 to 2012, found that the percentage of inspection and complaint reports citing a deficiency was even higher: 55 percent. Twenty hospice providers, including Vitas’ Atlanta operation, were cited for more than 70 violations over that span.

The types of violations vary, with many involving improper training or record keeping, such as not preparing written care plans for patients. Others involve threats to patient life or safety. In May 2013, inspectors for Florida’s health department concluded that a nurse at Suncoast Hospice, in Clearwater, gave a patient too much insulin, leading to her death a week later. Prior to the overdose, the patient was healthy enough to watch television and walk around, inspectors found. They determined that the nurse wasn’t properly supervised and that the hospice had not properly trained nurses on how to clean insulin equipment between uses.

Accidents and mistakes happen, even in the best-run health systems. But some of those alleged by hospice families and whistleblowers seem avoidable.

Janice Holan claims in a lawsuit filed in October that her husband, Robert, died choking on liquid pain medication because his doctor at Horizons Hospice of Pittsburgh failed to deliver morphine that could be delivered intravenously. The nurse on call told Holan that her husband’s doctor had left instructions “not to bother him with emergency calls,” Holan alleges. That doctor is now serving time in a West Virginia penitentiary for intentionally prescribing painkillers like oxycodone without a legitimate medical purpose, according to news reports.

Horizons did not respond to a request to comment on the case.

Joseph Micca, a former doctor at AseraCare in Atlanta, claims in a whistleblower lawsuit filed last year that managers repeatedly refused to discharge patients who were not appropriate for the service. In one instance, nurses continued to give morphine to a patient against her will, and against his direct orders, he alleges.

Insiders say they believe many hospice complaints stem from the basic business model. The Medicare hospice benefit produces an incentive to recruit as many new patients as possible — and to keep them on the service as long as possible. Unlike other segments of the health care industry, where revenues and costs can vary widely, Medicare pays a set daily rate for each person in hospice care, with higher allowances for patients that require more attention.

A federal advisory panel on Medicare spending has cautioned for years that these financial incentives likely push companies to enroll patients who aren’t appropriate for hospice.

Hospice executives maintain they aren’t swayed by these monetary rewards, and that the vast majority of their patients are appropriate for the service and satisfied with the care. They argue that because doctors must sign off on enrollments, proper medical oversight exists to prevent fraud.

Kevin McNamara, Chemed’s CEO, said in an interview that more than 90 percent of families indicated in surveys conducted by the company that they were pleased with the care they received from Vitas employees. (The company provided a summary of an internal report from the fourth quarter of 2013 that indicates a 95 percent satisfaction rate, but not the surveys themselves.)

McNamara said that his business depends on maintaining Vitas’ reputation for offering the highest quality health services to people at the end of their lives. “At a company like Vitas, patients die or are discharged on average every two weeks,” he said. “So it only remains a business if you are continuing to get referrals. If we were having service complaints, we wouldn’t have much of a business.”

Place for Pilgrims

Cicely Saunders, an Anglican nurse and social worker, established the first hospice in 1967 in a residential suburb of London.

Saunders had developed the hospice method through her work with terminally ill patients. Then, as now, it was as much a philosophy as a health service: pain relief and comfort, counseling for patients and families and spiritual guidance, if requested. “The last stages of life should not be seen as defeat, but as life’s fulfillment,” Saunders wrote in “Watch with Me,” her seminal text on the subject.

The movement took off in the U.S. in 1982 when Congress established the Medicare hospice benefit. It came about in part due to lobbying by a Methodist minister, Hugh Westbrook, who had started a nonprofit hospice a few years before in South Florida. Westbrook was one of the first to see the huge profit opportunity in hospice care, and over the next two decades would become the dominant figure in the industry.

For Westbrook, the flow of federal money into hospice programs quickly served to inflate his personal fortune. In 1989, he charged the hospice he had founded $2.3 million in management fees, up from $140,000 five years before, according to the Miami New Times.

The rewards were considerable, but Westbrook had his sights on a bigger prize. He wanted a law that would allow him to convert his Florida hospice into a for-profit business. At the time, only nonprofits could operate in the state.

In 1989, Florida’s legislature approved a rural health bill that included an amendment introduced by Westbrook’s neighbor, a state senator. The measure allowed for the establishment of for-profit hospices, just so long as the entity had been incorporated before 1978. Westbrook’s hospice was one of three in the state that fit that description. The new law guaranteed he would have the only for-profit hospice operating in two densely populated counties, Dade and Broward.

Westbrook didn’t respond to a request for comment.

Westbrook later merged the hospice he was managing into the for-profit national chain he had been building in other states. The company, Hospice Care, Inc., or HCI, began generating big profits. Soon after, it also attracted its first scandal.

In 1991, the Department of Health inspector general concluded that HCI administrators had urged workers to boost revenue by making sure a unit the company managed at a Chicago hospital remained full, according to the Miami New Times. Medicare pays a higher rate for this inpatient care, which is reserved for patients who require constant monitoring in a controlled setting, than it does for standard home care. The government report followed an article in the Chicago Tribune that described the alleged abuses.

Despite the findings, no action was taken against Westbrook’s company, which he had renamed Vitas Healthcare.

In 1997, a government audit found that a majority of long-stay patients at a dozen large hospices were not eligible for care under Medicare guidelines. Half of the cases surveyed were Vitas patients. No action was taken against the company then, either.

The Business of Dying

By 2004, the empire Westbrook had built was thriving. Vitas had locations in eight states and more than 6,100 workers on staff.

That year, Chemed Corp., the parent company of the plumbing chain Roto-Rooter, paid $406 million to buy out Vitas. (It already owned a piece of the company.) The hospice chain recorded revenues of more than $1 billion in 2013. It now operates in 18 states plus the District of Columbia and cares for 80,000 patients a year, according to the company.

The Chemed acquisition set off a new flurry of investing in the burgeoning field, with hedge funds and other health care companies making acquisitions. Since 2000, the hospice industry has more than quadrupled in size, according to the most recent federal data from the Medicare Payment Advisory Commission. The number of hospice patients has more than doubled.

Most of that growth has come from for-profits, which now make up 59 percent of the 3,720 Medicare-certified hospices in the U.S., federal data shows. In some states, like Florida, hospices must obtain a “certificate of need” in order to start operations, a high hurdle that means the state with one of the biggest elderly populations is served by relatively few, but very large, hospices. In Georgia, the bar to entry is fairly low, which has led to a proliferation: There are hundreds of hospices in Atlanta alone.

The private equity funds Kohlberg Kravis Roberts & Co. and GE Capital are among many that have made bets on hospice companies in recent years.

In 2010, Gentiva Home Health paid $1 billion to purchase Odyssey Healthcare. It was the largest hospice acquisition in U.S. history, according to the company.

The reason for this expansion partially reflects a decades-long shift in attitude among terminally ill patients, who increasingly prefer to spend their final weeks at home instead of in a hospital.

But the explosive growth of hospice is also attributable to an all-out marketing blitz by hospice companies eager to keep patient counts high, HuffPost found.

“The pressure was direct from operations on a daily basis,” said James Robbins, a former sales manager at AseraCare Hospice, a chain operating in 19 states. “What are you not doing? Why are we not getting more patients? We’d have constant conference calls, meetings.”

Robbins, who lives in Atlanta, said he would “cruise” nursing home lobbies and try to pressure medical directors at those facilities to refer directly to him. “It’s not even about patient care anymore; they’ve gone to the dark side,” he said. “It’s all about money.”

“I’m a nurse, not a saleswoman,” said Pamela Schiffman, a hospice nurse and patient case manager in California who said she has quit four jobs in the last decade because she was ordered to keep pestering families who resisted her pitch.

“If someone wants to fight to their last breath, they should be allowed to do so,” she said. “Who am I to tell them to give up?”

Hospice patients and their families are especially vulnerable to exploitation, hospice nurses told HuffPost. In order to ease people’s fears about hospice, marketers tend to downplay its basic function: that it is specifically designed for the last stage of life.

“One huge problem I had to deal with on a daily basis is patients not understanding they were dying and truly on a real hospice,” said a former manager at a Vitas branch in Florida, who requested anonymity for fear of losing her current job in the industry. “The admission and marketing staff would tell them, ‘This is the new hospice, we are not for dying people, the rules have changed, we can just help you.’”

This type of aggressive marketing, a hallmark of the for-profit companies, has changed the industry. Initially, hospice was mostly considered a refuge for cancer patients. Now, a majority of patients suffer other illnesses, including dementia and Alzheimer’s disease.

It is more difficult for doctors to predict life expectancies with these maladies, a factor that has contributed to longer hospice stays. Because hospices bill by the day, at a rate set by Medicare, longer stays end up costing more.

But the flood of new patients with these diseases does not alone explain the trend toward longer hospice stays, or the wide gulf between stay durations at for-profits and nonprofits. A HuffPost analysis of Medicare data found that the length of stay for all patients, including those with Alzheimer’s disease and dementia, has increased substantially since 2000.

The average for-profit length of stay in 2012 was 105 days, compared to 69 days for nonprofits, Medicare data shows.

In 2009, for-profit hospices charged 29 percent more per patient than nonprofits, according to the Medicare inspector general.

Healthier patients require fewer visits and stay longer on care, meaning hospices can reap bigger financial rewards. An analysis by the Washington Post last December of California hospice data found that the proportion of patients who were discharged alive from the health service rose by about 50 percent between 2002 and 2012. Profit per patient quintupled to $1,975 in California, the newspaper reported.

Live discharges are not uncommon — sometimes patients get healthier — but they are also seen as evidence of hospices trying to game the system. Federal rules require that the average patient stay at any given hospice not exceed six months, so some institutions seek to manipulate stay lengths in order to get as close to that number as possible without going over, hospice experts say.

The Medicare Payment Advisory Commission has urged the federal government to restructure the hospice benefit to remove such incentives by reducing payments for longer stays, warning that such changes are “imperative.” The Centers for Medicare and Medicaid Services has the authority to reform the system but has not adopted the proposed changes.

“Hospices are using patients as a commodity in order to get a higher reimbursement,” said David Oliver, a Florida plaintiff’s lawyer.

Oliver is one of a handful of attorneys who specialize in representing whistleblowers who bring lawsuits under a Civil War-era law that encourages people to report fraud against the government. These so-called qui tam cases are filed under seal, with the hope that the Justice Department will investigate and then join in.

They serve essentially as the government’s fraud detection system.

Last year, prosecutors sued Hospice of the Comforter, near Orlando, after it was accused by former employees of signing up patients designated as “Friends of Bob” — people who weren’t dying and thus didn’t qualify for hospice, but were enrolled anyway by then-CEO Bob Wilson in order to boost patient counts and pad executive bonuses.

Though a nonprofit, Hospice of the Comforter awarded bonuses pegged to admissions, the lawsuit contends. In November, the hospice agreed to pay $3 million to settle the case, a sum substantially less than the $10 million the bogus claims cost Medicare, according to a failed appeal of the deal. (Whistleblowers and their attorneys receive a cut of government qui tam settlements.)

Settlements like this one are meant to send a warning to other companies in the industry to fly straight. It’s not at all clear this is working.

In 2006, Odyssey Healthcare, which operates in 30 states, paid $13 million to settle claims that it had enrolled people in hospice who did not belong. Odyssey entered into a “corporate integrity agreement” with the federal government and installed a “first of its kind clinical review protocol” to ensure that such abuses did not happen again, the company said in a press release.

“We are pleased to have permanently resolved these matters with the federal government,” Odyssey said.

Six years later, in 2012, Odyssey paid $25 million to settle yet another fraud case, this time concerning charges it enrolled patients who didn’t belong in crisis care, the most expensive service offered by hospice.

The abuses began even as the company was signing the earlier agreement, federal prosecutors claim.

Patient Care

Hospice nurses confront death and suffering on a daily basis, and must cope with all the attendant emotions: anger, despair, heartache. They also must tend to the needs of many patients at one time, often dispersed over a broad geographical area.

Many families speak in reverential terms about the kindness a beloved hospice nurse showed a father, uncle or sibling. But in interviews, many nurses said business managers imposed unrealistic quotas that forced them to rush visits. Hospice doctors, they said, visited at-home patients only on rare occasions. Patients have suffered as a result, they said.

One nurse, Diane Langella, a former weekend triage manager for Vitas, said she quit last year because she couldn’t cope with the stress of handling the complaints anymore. Langella said she logged more than two dozen calls on an average weekend. The schedule left her feeling like a “spin doctor,” she said, “trying to smooth ruffled feathers.”

“It was the same thing over and over,” Langella said. “The nurse was supposed to order meds, but didn’t. The doctor was supposed to call, but didn’t. My mom hasn’t had a bath in a week. My grandmother has had trouble breathing for three days.”

The most common complaints concern medications.

Mary Gubacz fell into a ditch across the street from her assisted living facility at 2 a.m. after she was prescribed the powerful antipsychotic Seroquel while under care of Odyssey Hospice in Michigan, her daughter Marilyn Little said. The company said in a statement that it “follows strict protocols on the administering and monitoring of all patient medication — in keeping with the orders of the patient’s attending physician.”

John Helwick, who was 38 and dying of cancer, developed bed sores and became dehydrated and unable to eat or stay awake after he was given high doses of morphine by Vitas, his sister Jeanne Duncan said. A few days after canceling the service, Helwick was joking with his nephews and eating pizza, she said. (Helwick’s care is the subject of a legal fight between Vitas and the nonprofit hospice that took over for the company. The family is not part of that litigation.)

The government hasn’t done very much to investigate these types of complaints, or figure out their reach.

Outside experts have long pointed to major gaps in federal oversight for the hospice benefit. As recently as 2008, a federal advisory panel overseeing Medicare spending found that the government’s data collection was limited to counting hospice patients and figuring out how long they received the service.

“The program has virtually no information on the hospice care it purchases, in terms of either the specific services provided or the quality of care obtained,” says the report, from the Medicare Payment Advisory Commission. The commission has made similar statements every year since.

The government is only now starting to collect basic data to gauge the quality of care, more than 30 years after the benefit was introduced. New measures, ushered in under the Affordable Care Act, require hospice operators to submit data that measure seven different conditions for hospice patients, such as pain or shortness of breath.

Still, these new requirements, which go into effect in July, are unlikely to capture many of the oversights and abuses alleged by hospice patients and employees. Several of the measurements are “yes or no” questions that simply determine whether hospice providers are screening patients for various ailments.

Next year, the government will also begin issuing surveys to the family members of hospice patients who have recently died, though the Centers for Medicare and Medicaid Services has said public information about this data is unlikely to be released before 2017.

Experts who follow the industry argue that the government should have stepped in long ago with stricter oversight, given the built-in business motivation to enroll the maximum number of patients.

“This lack of transparency is a real problem,” said Josh Perry, a professor of business law and ethics at Indiana University who focuses on health care. “These companies have large fiduciary responsibilities to investors and shareholders. All of that is potentially in conflict with the best interests of the patient, and the best interests of taxpayers.”

‘She was my heart’

Maples moved with her husband to Mims, just up Highway 1 from Cape Canaveral, in 1965. They set up a business, Maples Flooring and Supply, selling carpeting to a wave of new arrivals pouring into the area, lured by jobs created by the Apollo moon program.

After her husband died in 2003, Maples struggled to get by. She lived below the poverty line, her sole income of about $1,000 a month from Social Security. Like many seniors, she was completely dependent on Medicare to pay her medical bills.

By the fall of 2011, her health was often poor. She ate a special diet to keep her diabetes in check and likely also suffered from COPD, a disease that often afflicts ex-smokers and makes it hard to breathe. Still, she retained her wit and sense of humor — she was known to croon country music standards at full volume — and in September of that year she attended her great-granddaughter’s wedding on a cruise ship docked in nearby Cape Canaveral, a six-hour affair.

On Oct. 15, 2011, she was admitted to Titusville Rehabilitation & Nursing Center, following a short hospital stay to treat a recurrent urinary tract infection. “I don’t feel like I have any good days anymore,” she told one nurse, according to her records.

Two days later, Maples’ daughter, Spry, learned that Medicare would not pay for any more days of rehab. Though Spry was eager to bring her mother home to the house they shared, she was nervous about whether she could manage her care alone.

Spry doesn’t recall exactly when she first spoke to a representative from Vitas, or how the company found out that her mother might be a candidate for hospice. But Vitas staff told HuffPost that the medical director of the Titusville rehabilitation center is also on the Vitas payroll, as a team leader.

Spry said a Vitas nurse persuaded her that hospice was the correct choice for her mother. The nurse touted the at-home care and help with other chores that had grown difficult, such as bathing her mother, Spry said. Spry signed the admission forms, even though she did not have the legal right to do so. Dunn, Maples’ grandson, actually had power of attorney over her affairs.

“I didn’t know what I was getting us into,” Spry said.

Vitas said patients or patient representatives must sign a consent form that clearly spells out the hospice mission before they can be enrolled. Records provided to HuffPost from Maples' family, obtained from Vitas, did not include this consent form.

HuffPost asked four industry professionals to review Maples’ file to evaluate her situation: a former Vitas manager at the same branch that oversaw Maples’ care, the medical director of a nonprofit hospice and two doctors with extensive experience managing hospices.

These experienced insiders said the records raise a host of concerns about Maples’ admission and quality of care as a Vitas patient.

The experts said Maples was almost certainly admitted without proper cause, then inexplicably bumped up to the most expensive levels of care. They questioned whether she needed the drugs she was administered, and said that Vitas’ apparent failure to take action as Maples’ health rapidly deteriorated indicates a serious breakdown in communication and an apparent disregard for what the family had asserted it wanted again and again.

“I see an awful lot of evidence that supports my worst fears about for-profit hospices,” said Robert Stone, the head of the hospice unit at Indiana University Health Bloomington.

Under Medicare guidelines, hospice patients require a terminal diagnosis or markers of a life-threatening condition — such as severe weight loss or loss of mobility — indicating the person will likely die within six months or sooner.

Maples did not have a terminal illness. Her diagnosis was “debility, unspecified,” according to her records. This is a catch-all term for frail patients that Medicare’s regulator has said hospices are no longer allowed to use, because so many claims made under the diagnosis were later rejected or determined fraudulent.

The pathologist who later performed an autopsy concluded that “no definitive or specific illness was identified which might have qualified her for hospice care,” according to a copy of the report shared by Maples’ family.

It’s also not clear that Maples consented to hospice treatment, at least initially. She did not sign the documents authorizing her enrollment “due to weakness,” according to Vitas records. Yet that same day, according to other nursing notes provided by her family, she was strong enough to move about using a walker during a physical therapy session.

Ralph Capone, a doctor who is a former hospice director, said he would have never admitted a patient who hadn’t given consent.

While declining to comment on the specifics of Maples’ case, McNamara, the president of Vitas’ parent company, said admission decisions are made by doctors, and that Medicare guidelines in fact give them great latitude to use their best professional judgment. Vitas doctors and nurses do not receive bonuses pegged to admissions, so there would be no reason for them to admit someone who did not belong on the service, he said.

“I’ve not heard of any lawsuit where this has been raised as an issue,” McNamara said, speaking about fraudulent admissions.

But Charles Gonzales, a Vitas doctor in Los Angeles for seven years, alleges in a lawsuit filed last year that Vitas “systematically submitted false certifications and recertifications” — meaning enrolled people who didn’t belong and failed to discharge people who didn’t qualify anymore for hospice care.

Current and former Vitas employees said the company intentionally overuses continuous care and inpatient care services in order to pad Medicare bills. Continuous care is meant for patients in crisis situations, such as severe, uncontrollable pain, according to Medicare guidelines.

A nurse who currently works for Vitas in the same Melbourne, Florida-based location that enrolled Maples said that nurses who tried to suggest at meetings that a patient was no longer appropriate for hospice were routinely “humiliated.”

“You are expected to make them look as bad as they can look,” the nurse, who requested anonymity for fear of jeopardizing her employment, said.

Maples was elevated to continuous care even when she wasn’t experiencing any pain at all, her records show. By doing so, Vitas boosted its daily billing rate from the standard $146.20 a day to $853.30.

Documents shared with HuffPost show that in the Melbourne office, at least, managers were encouraged to increase continuous care counts. In the fourth quarter of 2009, for example, one of four “management program goals” was for continuous care to average 17 patients a day. Managers said they received bonuses pegged to whether they met this and other patient count targets.

The most difficult part of Maples’ experience to evaluate concerns her medication. Her records show she was given morphine, along with Ativan, a type of sedative, and Haldol, a powerful antipsychotic drug.

All three medications are contained in the “comfort pack” that hospices ship to a patient’s house on admission. They are typically used in the final weeks of the patient’s life, when he or she is near death. But Maples’ family never accepted that her condition was dire enough to warrant them — a fundamental difference of opinion that colored their entire perception of hospice.

Because of the medication, Maples slept too much, and was often disoriented, her family claims. The hospice experts said nurses and doctors must clearly explain the reason for such medications, and the risks involved. The experts said it wasn’t clear from the records why Maples was being medicated at certain times.

Two months of mounting concerns crescendoed in a harrowing 24-hour stretch beginning the morning of Dec. 30, 2011. Around 9 a.m., Dunn called from his home in Tennessee to wish Maples a happy 83rd birthday at her home in Florida. Her speech was garbled and she wasn’t making any sense, he recalled.

He then called the head office of the local Vitas chapter in Melbourne, Florida, and asked that his grandmother be discharged — he wanted to quit Vitas. The receptionist said Maples’ doctor was out of town, and nothing could happen until he returned the next week, according to Dunn.

Later that day, Vitas transferred Maples from her home to its inpatient unit at Courtenay Springs Nursing Home on Merritt Island.

Maples’ records indicate she was moved for “constipation” — often a side effect of the medications she was receiving — and “nausea.”

Vitas charged Medicare $652 for each day Maples was in its inpatient facility. Moving patients into hospice-run facilities without cause, and for the express purpose of padding billing, was the allegation at the center of the critical audit way back in 1991.

Dunn said no one from Vitas contacted him to discuss the decision to move his grandmother. The next morning, New Year’s Eve, he called to check in on her. The nurse told him she wouldn’t wake up, he said.

Alarmed, he called his mother, Spry. “Get over there as fast as you can and don’t leave until the ambulance comes,” he told her.

An ambulance brought Maples to Cape Canaveral Hospital, where she was “unresponsive and in respiratory failure” on arrival, according to records. She was diagnosed with septic shock — a severe blood infection that is often fatal, especially in elderly patients.

Dunn was furious that Vitas staff did not alert him to Maples’ declining condition. “What was the plan?” he asked in a recent interview. “Were they going to do anything? Were they just going to let her die?”

This episode, more than any other, underscores the disconnect between Maples’ family and the hospice company they hired to take care of her.

Maples’ records show she or her family repeatedly indicated that she was full code, meaning she wanted life-saving treatment.

Hospice experts said that they would take extra care with such patients — making sure that families are informed if an emergency comes about, and transferring patients to a hospital when in doubt. But McNamara, the Chemed CEO, said that the full code designation “doesn't have much meaning in the hospice arena.”

Because it is a service for the dying, a majority of hospice patients have a status of DNR, or do not resuscitate. A nurse from the Vitas inpatient unit later told a social worker from the hospital that Maples’ family had cancelled a standing DNR order on the day she left in the ambulance, according to hospital records. There is no record of a DNR order for Maples among the documentation her family shared with HuffPost.

Capone, the hospice doctor who reviewed Maples’ records, said the apparent discrepancy between what the records show the family wanted and Vitas’ actions suggests a “grave medical documentation problem.”

A few weeks after Dunn filed a formal complaint about the situation, the Florida AG responded with an email recommending that he contact state health agencies, the local sheriff or the company itself. A back and forth with Florida’s Agency For Health Care Administration, which Dunn then contacted, petered out. Dunn said the agency initially didn’t seem to understand the complaint, and that he did not follow up. “I just didn't have the time or patience,” he said.

Maples recovered from the infection but was diminished, her family says. She died Feb. 4, 2012, after choking to death from a mucus obstruction that clogged her airway, an autopsy concluded. Maples' family believes the Vitas’ drug regimen weakened her, and the health crisis she suffered while under the hospice's care damaged her already frail body.

This claim is difficult to prove, hospice experts said, because it hinges on what-might-have-been theorizing and because it is impossible to know for sure what transpired behind the closed doors of the little house in Mims.

Maples’ death has been especially hard for Spry. On a recent afternoon, she stepped out onto the front porch to smoke a cigarette. An uneaten chicken sandwich from McDonald's was growing cold on the coffee table.

“When two women live together, you have your ups and downs,” she said, looking off toward a gnarled oak tree on the sprawling front lawn. “It wasn’t always easy. But she was my heart.”