Hospice, Inc.
EVA HILL / THE HUFFINGTON POST

When Hospices Mistreat The Dying, They Almost Never Get Punished

Key Findings

Federal regulators punished just 16 hospices over the past decade for violating health and safety standards, HuffPost found.
While many hospices have clean records, others were cited for dozens of problems that posed a direct threat to patient health.
The only enforcement action available to federal regulators is revoking a license, the ultimate penalty.
Top-violating hospices were cited for the types of problems that would lead to fines or penalties if detected at nursing homes.
Regulators consider hospice a lower priority for oversight than other health systems.

More dying Americans than ever now spend their last days in the care of a hospice, a service that offers a gentle alternative to a hospital setting. Hospice providers give comfort to the terminally ill, often in their homes. The promise is of a dignified death, surrounded by loved ones.

But when a hospice fails in this mission – for one, by putting patients in physical danger – it almost always escapes sanctions. The federal government rarely punishes hospices that violate its health and safety rules, an examination by The Huffington Post reveals.

In June, HuffPost found that hundreds of hospices had gone six years or more without a government agent conducting an inspection to make sure they were following Medicare’s rules. Now, the new analysis shows that when inspections do occur and problems are identified, government inspectors are almost always satisfied with hospice promises that they’ll reform. Medicare’s federal regulator has punished a hospice just 16 times in the last decade, despite carrying out 15,000 inspections and identifying more than 31,000 violations.

In each instance, the regulator terminated the hospice’s license, the only sanction available under federal law. Because Medicare provides about 90 percent of funding for hospices, losing a license essentially forces a hospice to close down.

Not all hospice violations of Medicare rules are cause for alarm. Some are minor: A dead battery in a smoke detector or a single mistake in a patient chart can trigger a violation, known as a deficiency. Other offenses are major, such as administering the wrong dose of medicine in error and killing a patient as a result. Because violations are not ranked by severity, it is not possible to say when a hospice should have been punished, but was not.

But it is clear that hospices are punished far less often than other health providers that get money from Medicare. At nursing homes, which also rely on Medicare funding, regulators rank infractions and routinely assess fines and other sanctions. In just the past three years, the U.S. government has suspended payments to more than 800 nursing homes and fined them nearly $100 million.

50 Hospices With The Most Violations

To qualify for Medicare payments, hospice agencies must undergo inspections to prove they are following rules set by the federal regulator that oversees the massive insurance program. This map shows the 50 active and inactive hospices that accumulated the most violations identified by government inspectors since 2004. The Huffington Post reached out to all the top-violating hospices that are still active. Read their responses here.

Source: The Centers for Medicare and Medicaid Services
For hospices certified by third parties, violation counts are a minimum.

In recent months, Congress has passed new legislation to try to close the inspection gap and make sure hospices are reviewed at least every three years. Health experts said it may not be enough to weed out the worst providers and persuade violators to reform.

“If a compliance system doesn’t have any teeth it will be ignored,” said Josh Perry, an Indiana University professor who has written extensively about the hospice industry.

When an inspector finds that a hospice has violated Medicare rules, hospice administrators are typically given multiple chances to submit written plans that explain how they will prevent such offenses in the future. The most serious offenses put a hospice on the termination track – an outcome that can be avoided if the hospice makes changes verified by inspectors in a follow-up visit.

In the time between the violation and the follow-up visit, which can span several months, the hospice can continue to care for patients. And despite the promises of reform, some hospices are cited months or years later for the same violations.

Part of the problem is that the industry has grown more quickly than regulators can keep up with. Over the last decade, the hospice industry has quadrupled in size. There are now more than 4,000 hospices in the U.S., serving more than 1 million patients a year. A majority of hospices are now operated as for-profit entities, a departure from hospice’s beginning as a niche service offered by charitable concerns.

Even the best providers are sometimes cited for violating Medicare rules, though usually not very often. Ninety percent of all providers were cited for fewer than 20 violations over the past 10 years, HuffPost found.

HuffPost’s investigation focused on the outliers – the 16 hospices terminated for health and safety violations, and the 50 active hospices cited for the most violations over the last decade that were not punished. Problems that turned up on those inspections included failing to offer core services, such as counseling, and not intervening to stop domestic abuse.

That only 16 hospices were sanctioned over the last decade is “shocking,” said Brian Lee, a former long-term care ombudsman for the Florida Department of Elder Affairs who reviewed the results of HuffPost’s analysis. The fact that end-of-life services are almost never booted from the Medicare program undermines the argument that the current inspection system is a sufficient check on bad behavior, he said.

While hardly perfect, a more sophisticated system that includes sanctions short of termination, such as fines and payment suspensions, would give regulators far more flexibility in handling hospices with serious abuses, Lee said.

“Nobody should experience negligence in their dying days,” he said in reaction to accounts described in this article. “That is the whole point of hospice – to give patients the most dignity possible.”

At Accent Hospice Care in 2013, a small for-profit in Meridian, Idaho, inspectors found that medical staff failed to intervene to protect a 78-year-old patient who said her husband was trying to kill her. The woman told the nurse that he was prone to fits of “uncontrollable rage, ” yet the hospice failed to call law enforcement or adult protective services, as required by law, even after the nurse made a chilling discovery – someone had tied a knot in the woman’s oxygen tubes, cutting off the air flow.

In almost all instances, whether problems were minor or major, the outcome was the same: Hospices avoided sanctions, as Accent did in the 2013 case.

A BETTER WAY TO DIE

The modern hospice movement emerged as a reaction to the over-medicalization of death. Until the 1960s, the attitude of most health providers was that death was something to be fought, to the bitter end, no matter how painful the treatment or disheartening the experience.

The hospice philosophy, as it is often described, is meant to be “holistic” care – tending to the emotional and spiritual needs of patients and their families. Instead of treatments, hospice practitioners seek to make patients as comfortable as possible. Morphine and other pain drugs are commonly used.

The approach resonated with a new generation of patients and caregivers who were increasingly skeptical about the benefits of putting dying people in the hospital. Medicare patients receive hospice care for free, provided that a doctor certifies them as appropriate, meaning that they likely have six months or less to live. Until recently, hospice was a nonprofit service mostly catering to cancer patients.

Hospice care usually happens at home, where a nurse or caretaker visits a dying patient and comforts him or her. Occasionally it happens in an institutional setting, such as a nursing home. A few hospices also have inpatient facilities.

Business Is Booming

Since 2000, the hospice industry has ballooned in size, adding providers and caring for more patients, who are living longer. Because Medicare pays most hospice claims, the cost to taxpayers has increased substantially. Here is a look at the expansion of Medicare-funded hospice.

Beneficiaries
Expenditures
Providers
Average Length of Stay
Source: The Medicare Payment Advisory Commission

As HuffPost detailed in June, hospice has transformed from a small niche service into a booming industry dominated by for-profit entities. Medicare largely bankrolls the hospice industry, providing $15 billion out of $17 billion in revenue in 2012.

Since 2000, for-profit companies that have aggressively courted new types of patients for hospice, including people suffering from degenerative diseases like Alzheimer’s and Parkinson’s, have come to dominate the field. Because these patients live longer, the average stay on hospice is much longer at the typical for-profit.

Federal prosecutors have sued most of the largest hospice companies in recent years for Medicare fraud – enrolling patients who were not close enough to death to qualify for the service and boosting them to extra-expensive levels of care they didn’t need.

The average bill sent to Medicare for each patient is also higher at for-profits, a factor critics say is because of the increased use of services like crisis care, which is supposed to be for people whose pain is out of control. HuffPost’s previous investigation focused closely on Vitas Healthcare, the largest hospice company in the country, which federal prosecutors sued last year for alleged billing fraud. One of the charges in that case is that Vitas boosted billings by overusing crisis care.

There is now a rift in the industry. Many nonprofit hospices blame the for-profits for sullying hospice’s good reputation. The for-profits respond that families of patients overwhelmingly say they were pleased with the care they received, and that the for-profit revolution has swept across all health services, not just hospice.

“I think the majority of us are trying to meet the needs of our patients and families and trying to do a good job,” said Carolynn Peterson, a nurse who manages a small nonprofit hospice near Sacramento and is the board president of the California Hospice and Palliative Care Association, a trade group.

ESCAPING PUNISHMENT

Regulators are in a tough spot when it comes to figuring out what to do about a hospice with serious problems, said a former official in the Medicare inspector general’s office, who spoke on condition of anonymity because he still has professional business dealings with the agency.

“They have very little sanctioning authority aside from the nuclear option,” he said. “It would be very helpful if they had the ability to impose monetary sanctions, which would make a lot of sense in hospice.”

Shutting down a hospice can pose political and practical challenges, the former official said. For example, finding a new provider for current patients can be a huge logistical challenge – and traumatic for the patients themselves.

“There are some terrible hospices and you can find some awful stories,” he said. “There aren’t easy answers but are certainly times when the balance is in favor of terminating, and it doesn’t happen.”

When it comes to sanctions, lawmakers and regulators have largely deferred to state agencies to determine when a license should be revoked. There is no bright-line termination standard, so it is difficult to say with certainty that a hospice deserved harsher treatment than it received in any instance.

Breaking The Same Rules

The 50 active hospices with the most violations since 2004, and those that were kicked off the Medicare program, were cited for many of the same violations, The Huffington Post found. The chart below shows how the most common violations accumulated by both groups compared with the hospice industry at large.

Terminated Hospices
Top Violators
All Hospices
Source: The Centers for Medicare and Medicaid Services
For hospices certified by third parties, violation counts are a minimum.

What is clear is that hospices can avoid punishment by submitting correction plans in almost every instance, even when inspectors uncover egregious mistakes or problems that indicate breakdowns in staff training or oversight.

Federal authorities have failed to take punitive action after discovering that hospice workers repeatedly overdosed patients with morphine, disbursed the wrong drugs and showed up to see patients hours or days late, according to HuffPost’s review.

Instead, hospices escaped punishment altogether after convincing regulators that they had fixed the most serious problems.

At Accent Hospice Care, where the woman told nurses she was afraid her husband would kill her, medical staff recommended to the dying woman that she should 'get away' from her husband, according to a report prepared by government inspectors in September 2013.

Inspectors also found that a nurse had withheld medication to treat seizures and panic attacks because she suspected that a relative was stealing the drugs. The patient became hypoxic – which includes symptoms related to altitude sickness – and suffered a panic attack. Accent pledged to make reforms, and there were no penalties.

Accent, which did not respond to requests for comment, was cited for 86 violations across two inspections that fall of 2013 – enough to place the hospice in the top 10 of all U.S. hospices, by number of violations, over the past decade. Eight of those violations were considered “condition-level,” which means inspectors determined the hospice was providing inadequate care to patients.

A follow-up inspection in December 2013 identified other violations, but found that the hospice had taken appropriate steps to correct the most serious issues. It wasn’t punished.

The same year, regulators cited the Pahrump Health and Rehabilitation Center, a nursing home, for several medication-related violations similar to those detected at Accent Hospice Care. Nurses failed to document that certain drugs were administered and did not give insulin to a diabetic patient. The violations led to $45,000 in fines.

Nursing homes differ from hospices in that care is provided exclusively in an institutional facility. There is also no requirement that a patient be in declining health, with less than six months to live. Nursing homes serve roughly three times as many patients in a year as hospices do.

Yet even with these differences, a comparison is useful because both types of health providers are regulated by the Centers for Medicare and Medicaid Services, and both tend to frail, typically elderly populations. The mechanism for oversight is also the same: To keep tabs on both hospices and nursing homes, Medicare’s regulator relies largely on state health agencies. Inspectors, called surveyors, comb through patient records and conduct interviews to make sure that the extensive set of rules is followed.

Until 1987, the system of sanctions was also essentially the same. The only enforcement mechanism to punish an offending nursing home was decertification, revoking a license. As is the case with hospices now, it was rarely used. But following a government report that revealed widespread noncompliance with Medicare rules, Congress swept aside the old system, adopting instead a new law that ushered in a far more sophisticated regulatory approach.

Nursing home violations are now graded in order of severity, and punishment is regularly meted out. In addition to fines, homes that frequently violate the rules can be placed on a special watch list that exposes them to extra scrutiny.

Secret Violations

State inspectors, working from Medicare guidelines, carry out most hospice reviews. They report their findings to the Centers for Medicare and Medicaid Services, the federal regulator that oversees hospice agencies. That is the information, which spans more than 15,000 inspections, that The Huffington Post analyzed for this story.
But there is other inspection data that HuffPost did not review. Hospices may also seek out the services of a private organization to conduct some types of inspections, and the results of those reviews are kept secret.
Medicare will accept those “accreditation surveys” in lieu of a certification survey conducted by the state. HuffPost has twice asked Medicare for the results of surveys conducted by private organizations. Both times, the agency rejected the request, citing sections of the Social Security Act.
Hospices may even hire one of these private companies to conduct a follow-up inspection in an instance where a state health department found multiple violations. The results of those inspections are also not available for public review.

Concerns remain about whether nursing home fines are applied consistently, and whether offenders are allowed to operate despite accumulating large numbers of repeat violations. But even with its flaws, the system offers far more transparency than with hospices, and much clearer evidence that the worst offenders will be punished if they aren’t taking proper care of patients.

Hospice oversight, by this measure, is out of date.

“Hospices have avoided a lot of the scrutiny that nursing homes have had,” said Robert Stone, the head of the hospice unit at Indiana University Health Bloomington. “I have mixed feelings about what would happen [financially] to my nonprofit hospice if there were more regulatory attention, but there are just too many bad apples out there not to reform the system.”

The Centers for Medicare and Medicaid Services did not directly address questions about whether the current system adequately protects patient safety. It also would not comment on decisions about specific hospices. Donald McLeod, a spokesman, did indicate that the agency believes that state health departments are up to the job of making sure that Medicare standards are consistently upheld.

“State surveyors are experienced health care professionals who are trained in survey methods,” McLeod said.

WALKING THE LINE OF TERMINATION

In many of the 16 cases where a hospice’s Medicare license was revoked, it seemed clear that termination was the only appropriate choice.

In Philadelphia, Mississippi, in 2010, regulators determined that the problems they found at Serenity Hospice Care, a small for-profit, were too severe to allow the provider to continue to operate, and revoked its license. Nursing staff had effectively abandoned home-care patients, inspectors determined. Some had gone weeks without receiving medication. “Patients are not being seen,” a nurse said, explaining that she skipped visits because she didn't have gas money.

The hospice had run out of money and its administrator had disappeared. It was kicked off the Medicare program.

HuffPost found that a majority of the top offenders over the last 10 years – including the few hospices that lost their licenses – were for-profits. The providers in this group also were frequently investigated for complaints, and were cited for high numbers of violations.

Hospices with the most citations were also far more likely than the average institution to have the same violation again in another inspection.

HuffPost reached out to all of the still-active hospices with the highest numbers of violations since 2004. Responses can be found here.

None had a record quite as bad as Serenity, but the review did yield dozens of examples where a hospice was found to have endangered patient safety or otherwise failed to perform a core hospice mission – such as offering counseling – sometimes across multiple inspections.

Unity Hospice of Northwest Indiana, a for-profit provider that has accumulated 122 violations over the last decade – more than any other hospice – is a case study in how a provider can repeatedly walk up to the termination line, yet avoid the ultimate sanction by promising to reform.

In June 2010, a Unity family complained that a loved one was left alone for days after she fell at home and cut her arm. In a letter to the state health department, the family said that they had run out of medication and bandages, and that a nurse had acted inappropriately, kissing the patient on her arms, legs and even lips .

Inspectors looking into the complaint uncovered what they termed “systemic problems” at the hospice, part of a small, regional chain that is based in Merrillville, a distant suburb of Chicago. The hospice was cited for not offering bereavement counseling, a core service. The volunteer coordinator, who was supposed to train and oversee people from the community recruited to visit patients, wasn’t doing that job at all, the report said. According to a complaint, the recruiter spent her time instead on marketing.

State inspectors recommended that the Centers for Medicare and Medicaid Services revoke Unity’s license. “The Department has discussed with you the seriousness of the violations and the need to achieve immediate compliance, ” a letter to Unity administrators warned.

At the last minute, administrators submitted a correction plan, pledging to reform the hospice’s operations, and Unity stayed in business.

Though the federal Medicare regulator cannot impose fines, in some situations local health officials can take action against an offending hospice under state law. In 2011, Unity paid $9,000 to settle an administrative complaint brought by the Indiana health department related to violations – a sum it successfully fought to have reduced from $18,000.

Just one year later, Unity again found itself in the crosshairs of a complaint investigation. This time, a family turned over video evidence that showed a hospice aide neglecting a woman at risk of aspirating, or inhaling her food into her lungs, according to an inspection report.

Doctor’s orders called for the aide to feed the woman just one tiny bite of pureed food at a time, less than a teaspoon in size, followed by a sip of liquid. Instead, the aide routinely made phone calls and texted while her patient spooned bites of food out of a Styrofoam cup by herself, videos showed. That footage had also captured the aide not following proper hygiene, leaving soiled towels on the floor and failing to wash her hands.

Once again, inspectors determined that Unity was substantially out of compliance with Medicare rules. Again, Unity avoided punishment by issuing a correction plan.

All told, health officials have investigated nine complaints brought against Unity in the last decade. The industry average for such investigations is less than one.

Unity did not respond to multiple requests for comment made by mail and phone.

There is no evidence that regulators acted inappropriately in their dealings with Unity. After each inspection, Unity managed to submit correction plans that inspectors deemed appropriate in the allotted amount of time.

But health experts who reviewed Unity’s records said they were stunned by the volume of citations and the repeat failures to obey Medicare standards. The repeat complaints and findings of substantial problems should be exactly the kind of behavior that leads to the ultimate sanction, they said.

“There’s no excuse for not decertifying them,” said Charlene Harrington, a nursing and sociology professor at the University of California at San Francisco who focuses on health care regulation and oversight.

‘ONE STICK’

Within the hospice industry, not surprisingly, there is mixed support for a regulatory system that includes more sanctions.

Tray Wade, the chief executive officer at HCI Care Services, a nonprofit hospice in Iowa that is in the group of the 50 top violators, said he would welcome more guidance and intermediate penalties short of termination. If violations were given letter grades, as they are with nursing facilities, it would be easier to determine whether problems spotted during an inspection were serious or not, he said.

“They have just one stick, and that is to just come in and take your whole program away,” Wade said. “I think it makes more sense to have an incremental process to identify gaps in the services before they get to that point.”

Donald Schumacher, the president of the National Hospice and Palliative Care Organization, a leading trade group, said he expects more frequent inspections to identify and fix existing problems at troubled hospices. He said that hospices already take inspections seriously and fear the consequence of not following the rules.

“If I was running a hospice program I would think that the threat of losing my license is pretty severe,” Schumacher said.

Schumacher’s group pushed for the recent change in the law requiring hospice inspections every three years. (The pace of inspections has recently picked up, but as of late October, nearly 400 had still not been inspected in more than six years.) Congress approved the change in September. It will take effect Jan. 15, 2015.

Having inspections more often, Schumacher said, is the best way to bring hospice oversight in line with other types of health services.

But if those inspections don’t come with a greater threat of punishment, it is far from clear that they will do the job.

“Making sure that this highly vulnerable population is protected is an important function of federal and state governments,” said Joan Teno, a health policy professor at Brown University’s School of Medicine. “And they are not doing it.”

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