The Price of Compassion - Commercialized Hospices and the Mistreatment of Vulnerable Patients

Introduction - Commercialized Hospices

We have occasionally written about the rise of the commercialized hospice industry, and concerns that commercialized hospices may not be providing the compassionate care they promise.  As we have discussed before, the hospice movement began with small, non-profit, community based organizations meant to provide compassionate palliative care to the terminally ill.  However, in the US, the hospice movement has been co-opted by commercial hospices, often run by large corporations, which may put profit ahead of compassion.

Several long investigative articles have appeared this year that focus largely on the commercial part of the hospice movement:
Terminal neglect? - how some hospices decline to treat the dying, Washington Post, May 3, 2014, by Peter Whoriskey and Dan Keating
How dying became a multibillion-dollar industry, Huffington Post, June 19, 2014, by Ben Hallman
Is that hospice safe? - infrequent inspections mean it may be impossible to know, Washington Post, June 26, 2014, by Peter Whoriskey.

As we have discussed before, the biggest risk of the rush to commercialize hospices is that it may lead to the enrollment of patients who are not terminally ill.  To try to achieve a dignified death in as much comfort as possible, the hospice movement emphasizes aggressive use of analgesics, including narcotics, and other psychoactive drugs.  Also, hospice patients cannot expect treatments meant to prolong life or cure acute problems, since in terminal patients these may cause unpleasant side effects and will not, by definition, work.  Therefore, a patient who is not terminal enrolled in hospice runs risks of being drugged into a stupor, and could be doomed were he or she to develop an acute illness for which treatment is available, like a bacterial pneumonia that might respond to antibiotics, because in hospice antibiotics are not given for acute infections.  Thus the whole hospice model depends on the ability of hospices to enroll only terminally ill patients.

This is difficult because prognosis is difficult to predict.  Beyond that, we discussed how commercial hospices may have financial incentives to enroll patients who are not terminally ill because they can make a lot of money from such patients.

The recent articles add more evidence that commercial hospices may enroll patients who are not terminal, and such patients may end up suffering or dying prematurely because of excess pain treatment or withholding of treatment of acute illness inherent in the hospice model.

A Long Anecdote Illustrating the Dangers of Commercialized Hospices

The Huffington Post article provided an extended anecdote about what happened to a patient enrolled in a commercial hospice despite the lack of an identified terminal condition. The patient was Mary Maples.

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 hospitalized briefly for a urinary tract infection. Her family felt she needed rehabilitation, but apparently had run out of eligibility for Medicare payment for it. Then somehow the family was approached by marketers for Vitas Inc, a commercial hospice company owned by Chemed, also the parent company of Roto-Rooter.

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,

Note that what the Vitas nurse allegedly emphasized were ancillary benefits of hospice, not its key function.  The implication is that at a time of vulnerability, the Vitas marketing pitch was deceptive.

It is not clear that Ms Maples or anyone with the legal power to make decisions for her understood the implications of hospice, or consented for her enrollment.

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.

Also,

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. 

Enrolling the patient without her consent, or consent from a person with legal authority over her, appears to be a serious ethical failure by Vitas. 

Hospice records did not show the patient had a terminal illness.

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. 

So the patient did not have a terminal illness and did not consent to hospital enrollment, and the hospital company apparently did not make it clear that hospice is only supposed to be for terminal patients.  Furthermore, later it turned out that the family thought Ms Maples would be a candidate for resuscitation, yet hospice care is specifically not supposed to include such aggressive attempts at life prolongation.  Again, this suggests a serious failure by hospice personnel to communicate clearly at best, and perhaps outright deception.

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

Nonetheless, the patient was apparently treated with narcotics and anti-psychotics even though she did not have chronic pain.  This appears to be very bad medical practice, and potentially very dangerous.

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. 

Ultimately, Ms Maples suffered an acute event that the hospice did not apparently treat adequately.  A relative talked to her on the telephone, and found,

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.'

Then,

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. 

This implied that hospice personnel failed to adequately manage a potentially fatal acute problem, septic shock, extremely poor medical practice.  However, it would make no sense to aggressively treat septic shock afflicting a patient who was terminal, but, as noted above, Ms Maples did not have a terminal condition.  Although Ms Maples survived that episode, she died weeks later.

So in this one detailed case, a patient who had chronic problems but was not terminally ill was enrolled in hospice, apparently without adequate consent, and after a marketing pitch that did not seem to explain that hospice is only for terminal care.  The patient received apparently very bad medical care, including the use of narcotics for no apparent reason, and an initially inadequate response to a severe acute medical problem, probably hastening her death.  This suggests that commercialized hospices over-selling their services to the wrong patients can hurt, and sometimes even kill patients.

Overly Aggressive and Deceptive Marketing

The Huffington Post and two Washington Post articles also contained other illustrations of these problems.  In the Huffington Post article was the general observation that

Every day, hospice marketers descend on doctor’s offices, rehab centers and hospitals. These workers have been known to rifle through patient logs at nursing stations, scramble to sign up what some in the industry call 'last gasp' patients — people with just hours left to live — and even scuffle with each other in hospital corridors over the right to sign up dying people, according to current and former hospice employees and allegations made in federal lawsuits.

Such a frenzy suggests a certain lack of care about whether the targeted patients are appropriate. Furthermore, the article included specific examples of the push to enroll more patients, no matter what.  

'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.

Note that AseraCare is a commercial hospice system owned by Golden Living, which in turn is a privately held corporation partially owned and entirely managed by Fillmore Partners, and San Francisco based private equity group (look here). 

Also, there is evidence that marketers were pushed by management to obscure the nature of hospice, and deceive patients into thinking that they would not be denied acute care should they need it.

'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.'

Note that the idea that the rules have changed and hospice is not for dying people anymore is absolute nonsense. 

Furthermore, there is evidence that once enrolled, hospices may resist discharging patients even if it becomes apparent that they are not terminally ill.

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.'

Medical Mismanagement

In the Huffington Post article, there were several anecdotes about excess use of pain medicine,

In one example described in court filings, prosecutors allege a Vitas patient was given crushed morphine, even though she wasn’t in pain. The morphine treatment continued even after the patient showed signs of having a toxic reaction to it — even seizures, prosecutors claim. 

Also,

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. 

Note that Odyssey hospices are one of multiple chains of hospices owned by Gentiva.


The Washington Post article, Terminal Neglect, provided data about many hospices' inability to manage worsening symptoms (but presumably mainly for patients who were terminally ill.)  In particular, it showed that many hospices never provide what is called continuous nursing care which is usually required by patients with worsening symptoms.  For example,

One of the largest such hospices in the country is the Heartland Hospice Services in Santa Rosa, Calif., 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.

Note that given the size of the sample, that would have to be a pretty major statistical anomaly.  

Also,

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.  

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.

The newer Washington Post article, Is That Hospice Safe?, documented many instances of apparently inadequate care of worsening clinical problems,

A woman dying of liver cancer, battling nausea and breathing difficulties, waited weeks for someone to drain fluid from her swelling abdomen and died still waiting, according to records. Another cancer patient had a feeding tube that oozed pus where it pierced his skin and did not actually reach his stomach. He had received no fluids from it for five days, emergency room doctors said. At the same time, a patient complaining about chest pain waited two days for a recorded visit and eventually was taken to a emergency room and diagnosed with pleurisy.

Many of these problems may go unnoticed, because the article noted that hospices are inspected very infrequently, if ever, by government agencies.

Summary

The three recent articles add to the evidence that commercial hospices often enroll patients who are not terminally ill, although hospice is meant only for the terminally ill.  There may be strong incentives for hospice employees to do so, and such enrollment may be induced by deceptive marketing and not accompanied by true informed consent.  Once in hospice, many patients may get poor medical management.  Patients who are not terminally ill may be at risk of getting inadequate care, and perhaps dying due to this lack, were they to get acutely ill, since hospice is not meant to provide life prolonging or potentially curative care for acute problems.

Note that most of the examples above concern the largest commercialized hospices, owned by large publicly held corporations (Vitas owned by Chemmed and, Odyssey owned by Gentiva), or by large corporations owned by private equity (AseraCare, owned by Golden Living, run by Fillmore Partners, and HCR ManorCare, owned by Carlyle Group).  Such large and rich organizations ought to be particularly held accountable for what they are doing to vulnerable patients. 

The US is in the midst of a great, uncontrolled experiment.  We have systematically taken medical and health care services previously lead by health care professionals and sited within community non-profit organizations and given them to for-profit firms, often huge corporations.  Meanwhile, rather than increasing regulation to account for this, we have systematically deregulated health care organizations.  There is more evidence that an increasingly commercial health care system within the framework of wild West, laissez faire capitalism is expensive and dangerous.  It is particularly dangerous for vulnerable populations especially when they are unaware that their caregivers must answer to huge corporations.

In my humble opinion, we should return control of direct patient care, especially of the most vulnerable patients, to health care professionals and if necessary small non-profit community organizations.  We ought to give strong consideration to banning corporate hospices, and banning all forms of the corporate practice of medicine and corporate health care "delivery."

Given how many insiders make so much money from the current version of laissez faire capitalism in health care, however, I would expect strong resistance should such apparently "radical," but actually conservative proposals actually get any mainstream attention.    

A Web of Deception Ensnares US Nursing Homes

The New York Times just published a report of some important investigative reporting about changes in how US nursing homes are currently managed, or mismanaged, leading to bad effects on patients' outcomes and safety. As an example, the report recounted the case of an elderly women who died in the Habana Health Center in Tampa, FL. The article made a series of key points,

• The homes were acquired by private equity companies not usually associated with health care.
• The companies drastically cut the costs of their acquisitions.
• These cost cuts decreased care, apparently leading to poor outcomes.
• The private equity companies set up complex corporate structures for their acquisitions, hiding their ownership, and thwarting lawsuits and regulation.

I have summarized supporting quotes for each point below.

Acquisition by Private Equity Companies

The changes seem to stem from the acquisition of many nursing homes and nursing home chains by "large Wall Street investment companies .... Those investors include prominent private equity firms like Warburg Pincus and the Carlyle Group, better known for buying companies like Dunkin’ Donuts. As such investors have acquired nursing homes, they have often reduced costs, increased profits and quickly resold facilities for significant gains."

The acquisitions involved were substantial. "But in recent years, large private investment groups have agreed to buy 6 of the nation’s 10 largest nursing home chains, containing over 141,000 beds, or 9 percent of the nation’s total. Private investment groups own at least another 60,000 beds at smaller chains and are expected to acquire many more companies as firms come under shareholder pressure to sell."

Drastic Cost Cutting

The major manifestations of mismanagement seem to be drastic cost cutting.

'The first thing owners do is lay off nurses and other staff that are essential to keeping patients safe,' said Charlene Harrington, a professor at the University of California in San Francisco who studies nursing homes. In her opinion, she added, 'chains have made a lot of money by cutting nurses, but it’s at the cost of human lives.'

The Times’s analysis of records collected by the Centers for Medicare and Medicaid Services reveals that at 60 percent of homes bought by large private equity groups from 2000 to 2006, managers have cut the number of clinical registered nurses, sometimes far below levels required by law. (At 19 percent of those homes, staffing has remained relatively constant, though often below national averages. At 21 percent, staffing rose significantly, though even those homes were typically below national averages.) During that period, staffing at many of the nation’s other homes has fallen much less or grown.

Nurses are often residents’ primary medical providers. In 2002, the Department of Health and Human Services said most nursing home residents needed at least 1.3 hours of care a day from a registered or licensed practical nurse. The average home was close to meeting that standard last year, according to data.

But homes owned by large investment companies typically provided only one hour of care a day, according to The Times’s analysis of records collected by the Centers for Medicare and Medicaid Services.

For the most highly trained nurses, staffing was particularly low: Homes owned by large private investment firms provided one clinical registered nurse for every 20 residents, 35 percent below the national average, the analysis showed.

Poor Patient Outcomes

In turn, such cost cutting was associated with poor outcomes.

The typical nursing home acquired by a large investment company before 2006 scored worse than national rates in 12 of 14 indicators that regulators use to track ailments of long-term residents. Those ailments include bedsores and easily preventable infections, as well as the need to be restrained. Before they were acquired by private investors, many of those homes scored at or above national averages in similar measurements.

In addition,

Regulators with state and federal health care agencies have cited those staffing deficiencies alongside some cases where residents died from accidental suffocations, injuries or other medical emergencies.

Federal and state regulators also said in interviews that such cuts help explain why serious quality-of-care deficiencies — like moldy food and the restraining of residents for long periods or the administration of wrong medications — rose at every large nursing home chain after it was acquired by a private investment group from 2000 to 2006, even as citations declined at many other homes and chains.

The typical number of serious health deficiencies cited by regulators last year was almost 19 percent higher at homes owned by large investment companies than the national average, according to analysis of Centers for Medicare and Medicaid Services records.

In the case of Habana Health Center,

Habana’s managers increased occupancy, and cut expenses by laying off about 10 of 30 clinical administrators and nurses, Medicare filings reveal. (After regulators complained, some positions were refilled and other spending increased.) Soon, Medicare regulators cited Habana for malfunctioning fire doors and moldy air vents.

'Those owners wouldn’t let us hire people,' said Annie Thornton, who became interim director of nursing around the time Habana was acquired, and who left about a year later. 'We told the higher-ups we needed more staffing, but they said we should make do.'

Regulators typically visit nursing homes about once a year. But in the 12 months after Formation’s acquisition of Habana, they visited an average of once a month, often in response to residents’ complaints. The home was cited for failing to follow doctors’ orders, cutting staff below legal minimums, blocking emergency exits, storing food in unhygienic areas and other health violations.

Soon after, nursing home inspectors wrote in Centers for Medicare and Medicaid Services documents that Habana was at fault when a resident suffocated because his tracheotomy tube became clogged. Although he had complained of shortness of breath, there were no records showing that staff had checked on him for almost two days.

Five months later, Mrs. Hewitt discovered that her mother had a large bedsore on her back that was oozing pus. Mrs. Garcia was rushed to the hospital. A physician later said the wound should have been detected much earlier, according to medical records submitted as part of a lawsuit Mrs. Hewitt filed in a Florida Circuit Court.

Three weeks later, Mrs. Garcia died.

Complex, Opaque Corporate Structures

Particularly fascinating and disturbing was the evidence that the nursing homes' managers evaded regulation, and legal responsibility for what they were doing by creating immensely complicated and opaque corporate structures.

Private investment companies have made it very difficult for plaintiffs to succeed in court and for regulators to levy chainwide fines by creating complex corporate structures that obscure who controls their nursing homes.

By contrast, publicly owned nursing home chains are essentially required to disclose who controls their facilities in securities filings and other regulatory documents.

The Byzantine structures established at homes owned by private investment firms also make it harder for regulators to know if one company is responsible for multiple centers. And the structures help managers bypass rules that require them to report when they, in effect, pay themselves from programs like Medicare and Medicaid.

For example,

Formation bought Habana, 48 other nursing homes and four assisted living centers from Beverly Enterprises, one of the nation’s largest chains, for $165 million.

Formation immediately leased many of the homes, including Habana, to an affiliate of Warburg Pincus. That firm spread management of the homes among dozens of other corporations, according to documents filed with Florida agencies and depositions from lawsuits.

Each home was operated by a separate company. Other companies helped choose staff, keep the books and negotiate for equipment and supplies. Some companies had no employees or offices, which let executives file regulatory documents without revealing their other corporate affiliations.

Current staff members at Habana declined to comment. Formation Properties I said it owned only Habana’s real estate and leased it to an independent company, and thus bore no responsibility for resident care.

That independent company — Florida Health Care Properties, which eventually became Epsilon Health Care Properties and subleased the home’s operation to Tampa Health Care Associates — is affiliated with Warburg Pincus, one of the world’s largest private equity firms. Warburg Pincus, Florida Health Care, Epsilon and Tampa Health Care all declined to comment.

The example of Habana Health Center showed how the complex and opaque corporate structures thwarted regulators.

Those [government] citations never mentioned Formation, Warburg Pincus or its affiliates. Warburg Pincus and its affiliates declined to discuss the citations. Formation said it was merely a landlord.

'Formation Properties owns real estate and leases it to an unaffiliated third party that obtains a license to operate it as a health care facility,' Formation said. 'No citation would mention Formation Properties since it has no involvement or control over the operations at the facility or any entity that is involved in such operations.'

Florida’s Agency for Health Care Administration has named Habana and 34 other homes owned by Formation and operated by affiliates of Warburg Pincus as among the state’s worst in categories like 'nutrition and hydration,' 'restraints and abuse' and 'quality of care.' Those homes have been individually cited for violations of safety codes, but there have been no chainwide investigations or fines, because regulators were unaware that all the facilities were owned and operated by a common group, said Molly McKinstry, bureau chief for long-term-care services at Florida’s Agency for Health Care Administration.

And even when regulators do issue fines to investor-owned homes, they have found penalties difficult to collect.

'These companies leave the nursing home licensee with no assets, and so there is nothing to take,' said Scott Johnson, special assistant attorney general of Mississippi.

Complex corporate structures also enable nursing home management to evade scrutiny of what they charge.

Government programs require nursing homes to reveal when they pay affiliates so that such disbursements can be scrutinized to make sure they are not artificially inflated.

'The government tries to make sure homes are paying a fair market value for things like rent and consulting and supplies,' said John Villegas-Grubbs, a Medicaid expert who has developed payment systems for several states. 'But when home owners pay themselves without revealing it, they can pad their bills. It’s not feasible to expect regulators to catch that unless they have transparency on ownership structures.'

In the case of Habana Health Center,

For example, Habana, operated by a Warburg Pincus affiliate, paid other Warburg Pincus affiliates an estimated $558,000 for management advice and other services last year, according to reports the home filed.

However, complex corporate structures make such scrutiny difficult. Regulators did not know that so many of Habana’s payments went to companies affiliated with Warburg Pincus.

Summary

We see some very familiar themes in this sorry tale.

Health care is increasingly dominated by large organizations. In this case, some of these organizations are not usually identified with health care, and the identity of other organizations is secret.

The leadership of many health care organizations will put their financial self-interest ahead of patients' interests.

The leadership of many health care organizations will hide what they are doing, evade responsibility, and thwart accountability by deliberate complexity and outright deception.

Until the leadership of health care organizations becomes more transparent and accountable, things are likely to continue to go downhill.

Once again, "sunlight is the best disinfectant."