At hundreds of U.S. hospices, more than one in three patients are dropping the service before dying, new research shows, a sign of trouble in an industry supposed to care for patients until death.
When that many patients are leaving a hospice alive, experts said, the agencies are likely to be either driving them away with inadequate care or enrolling patients who aren’t really dying in order to pad their profits.
It is normal for a hospice to release a small portion of patients before death — about 15 percent has been typical, often because a patient’s health unexpectedly improves.
But researchers found that at some hospices, and particularly at new, for-profit companies, the rate of patients leaving hospice care alive is double that level or more.
The number of “hospice survivors” was especially high in two states: in Mississippi, where 41 percent of hospice patients were discharged alive, and Alabama, where 35 percent were.
“When you have a live discharge rate that is as high as 30 percent, you have to wonder whether a hospice program is living up to the vision and morality of the founders of hospice,” said Joan Teno, a Brown University hospice doctor and researcher and the lead author of the article published in the Journal of Palliative Medicine. “One part of the reason is some of the new hospice providers may not have the same values — they may be more concerned with profit margins than compassionate care.”
A patient must have a life expectancy of six months or less to enroll in hospice care, according to Medicare rules. Hospice treatment focuses on providing comfort to the terminally ill, not finding a cure.
While judging life expectancy is inexact, the rising rates of live discharge in the U.S. in recent years has raised concerns that the rapidly changing industry has become rife with one of two types of improper practices.
First, some hospices appear to be forsaking patients when their care becomes expensive. Hospices bill by the day, so added tests and treatments can cut into their profits. Researchers found, for example, that 1 of 4 patients who leave hospice alive are hospitalized within 30 days.
Some hospices “abandon their end stage residents to the nearest hospital ER and have the legal representative sign the [hospice] revocation papers — all to save money and avoid intensive continuous care at the end of life,” W.T. Geary Jr., medical director at the Alabama Department of Public Health, said in an e-mail.
In what researchers described as a particularly alarming pattern, more than 12,000 patients in 2010 were released alive from hospice, entered a hospital and within two days of leaving the hospital were re-enrolled in hospice. Those are the kind of abrupt transitions that can be disruptive and confusing for the dying, and which hospice care is supposed to transcend.
“The concern is that hospices could be discharging people to avoid expensive care, such as a CAT scan or an MRI — and that they are trying to game the system,” Teno said.
The other problem driving up the numbers of people leaving hospices alive is the practice of hospices enrolling patients who aren’t actually dying.
The federal government in recent years has sought to recover more than $1 billion from hospices that, according to attorneys, illegally billed Medicare for patients who weren’t near death.
The new research supports the idea that many of the patients released alive from hospice are far from death: More than one-third of patients who were released alive from hospices did not re-enroll in a hospice and were still alive six months after being released.
While the federal government has filed numerous lawsuits to recover the money spent on hospice patients who weren’t dying, the harm is not just financial.
Hospice care often exposes patients to different, more powerful drugs, including morphine and other potent painkillers. In some cases, those medications led to the death of patients who were not otherwise dying, families say.
“My mother was not dying, just old and in a lot of pain,” said Shalynn Womack, a writer in Tennessee whose mother entered a hospice with the diagnosis of “failure to thrive.”
After receiving what Womack called a “toxic cocktail” of drugs, her mother passed away. Womack has since testified to a Tennessee legislative committee about what she considers to be the dangers of enrolling patients in hospice who aren’t dying.
“Putting her in hospice was putting her in harm’s way,” Womack said.
Roseann Gillespie and her daughter, Shalynn Ford Womack, are shown on Roseann’s 90th birthday on Oct. 11, 2011, six months to the day before she entered hospice for respite care. (Photo by Nova Ford/Photo by Nova Ford)
In December, The Washington Post reported a rapid growth in live discharge rates, based on an analysis of more than 1 million patient records over 11 years in California — a state that, by virtue of its size, offers a portrait of the industry.
More recent Medicare statistics show a similar trend nationally: Between 2000 and 2012, the overall rate of live discharges increased from 13.2 percent of hospice discharges to 18.1 percent in 2012.
The forthcoming study, to be published in the Journal of Palliative Medicine, is based on an analysis of more than 1 million records of Medicare patients across the U.S. during 2010, and provides more detail on the variance of rates between hospices and states. It found that more than 182,000 hospice patients were discharged alive. More than 400 hospices released more than one in three of their patients alive.
A spokesperson for the National Hospice and Palliative Care Organization, the industry trade group, declined to comment on the findings because they have not seen the research.
In the past, industry advocates have argued that the national rise in live discharges stems from the changing nature of the hospice population. A larger portion of hospice patients today have ailments that are harder to predict, such as dementia. That, they say, could explain why more patients are exiting hospice care alive.
This explanation, however, does not appear to explain the vast differences between states that the researchers found.
For example, the live discharge rate was 41 percent in Mississippi but only 17 percent in neighboring Arkansas; it was 35 percent in Alabama but only 16 percent in neighboring Tennessee.
The new paper also finds substantial differences between older hospices and newer ones.
In recent decades, what began as a movement to improve the end-of-life experience has become more of a commercial enterprise. In 2000, only 30 percent of hospices were run by for-profit companies, while the rest were operated by community organizations, religious groups and government agencies. By 2012, the proportion of for-profit companies had nearly doubled, to 6o percent, according to Medicare figures. Moreover, many hospices are relatively new, largely because the number of for-profit hospices has tripled, rising from 672 in 2000 to 2,196 in 2012.
At small for-profit hospices open five years or less, the live discharge rate averaged 32 percent, according to the research. That compares with 14 percent of older for-profit companies.
“That is a very striking difference,” said Melissa Aldridge, associate professor at Icahn School of Medicine at Mount Sinai, who has proposed that a hospice’s live discharge rate be considered as a measure of quality. “What we have found is that smaller, newer hospices had higher rates of live discharge. The ability to deal with a patient who’s having a crisis at home — to be able to send a team out there — may be more difficult for smaller hospices.”
Those patients end up going to the emergency room, Aldridge said, “and that’s usually not what someone on hospice wants. They usually want to be at home.”