BIRMINGHAM, Ala. — Inspectors showed up at a hospice here in March 2012, and then issued what amounted to a 161-page catalogue of end-of-life neglect.
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 didn’t 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 of chest pain waited two days for a recorded visit and was eventually rushed to the emergency room and diagnosed with pleurisy.
In all, the state health inspectors found treatment problems in the records for nine of 14 patients from early 2012.
The discoveries at the hospice, known as Expect Care, highlight how weaknesses in the inspection system can allow agonizing lapses in care for the terminally ill.
The typical hospice in the United States undergoes a full government inspection about once every six years, according to federal figures, making it one of the least-scrutinized areas of U.S. health care — even though roughly half of older Americans receive hospice care at the ends of their lives. By contrast, nursing homes are inspected about once a year, and home health agencies every three years.
“It was horrible — we kept saying, ‘Oh my gosh,’ ” said Debbie Wetzel, one of the Alabama inspectors on the case.
The very nature of hospice care makes ensuring its quality difficult: Most patients receive hospice care where they live — whether at a personal home, a nursing home or an assisted-living facility.
The dispersal of patients makes oversight difficult to begin with, but the infrequency of inspections makes any shortcomings even less likely to be detected.
Expect Care had no inspection when new owners took over in the second half of 2011 and, under normal schedules, they could have expected another five years to pass before their next visit from state inspectors. If not for the complaint of a former employee, its problems might never have been uncovered.
“Hospice is the most runaway program we’ve got,” said Carolyn Duck, the recently retired supervisor of the state group that inspects Alabama hospices, hospitals, dialysis clinics and home health agencies. “They’re out there doing whatever they want. When an inspector is in there every seven years, they may feel like no one’s looking.”
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The sparse scheduling of hospice inspections is dictated by the federal government, which sets the pace based on how much money the Medicare system has available to pay for the reviews. The Medicare program pays the states to conduct inspections and directs how often they should be conducted. As part of its annual budgeting reports, Medicare recently directed that hospices be inspected about every six years, although in 2009, it called for a frequency of just one per 10 years or more.
The result is that even as the U.S. hospice industry has grown rapidly and cares for some of society’s most vulnerable, the companies that provide it are rarely reviewed for competency.
It is impossible to say precisely how many hospice companies might be cited for violations if there were more scrutiny, but a significant portion of them appear to be providing scant care, Medicare statistics and interviews show.
— About 18 percent did not provide a single patient with “crisis care” during 2012, according to Medicare billings, meaning the hospice did not provide either continuous nursing care or inpatient services if their patients had symptoms that were difficult to control. Hospices are required to be able to provide such services.
— About 20 percent of hospices regularly failed to have a registered nurse visit the patient in the 48 hours before death.
— Even though hospices aim to care for their patients until they die, about 20 percent of hospices discharge more than one in four patients alive, a sign that patients may be leaving the hospice to seek treatment elsewhere.
Separately, a government review in 2007 found that when inspections are conducted, about half of the time inspectors turn up”deficiencies” in patient treatment, though some of these may have been merely shortfalls in record-keeping.
Making inspections even more important is the reluctance of families to file complaints about bad care, experts said. The families are typically grieving, after all, and may feel ill-qualified to judge medical care. Moreover, they may not know where to make such a complaint.
At Expect Care in early 2012, for example, none of the patients described as getting poor treatment filed complaints, officials said.
The infrequency of inspections has repeatedly drawn complaints and suggestions for reform.
In 2009, “many state officials” told the Government Accountability Office that inspections of hospices and other facilities should be conducted more often — at least every two or three years.
In 2007 and again in 2013, the Office of the Inspector General of the Department of Health and Human Services, likewise suggested that hospice inspections be conducted more frequently.
Even the Washington-based trade group, the National Hospice and Palliative Care Organization, has advocated more frequent inspections. While it is not often that an industry asks for more government oversight, the NHPCO has supported legislation that would mandate more frequent hospice inspections.
“There are two kinds of hospices in America: the ones that get it right, and those that should be out of business,” Don Schumacher, president of the NHPCO, said in a statement.
Michael Osborn, who with his wife, Leta Parsons, purchased the Expect Care hospice in the second half of 2011 — less than a year before the bad inspection — said that the poor care reflected the problems accrued in the business under a former owner, who he said racked up more than $1 million in debt and had taken on patients who were ineligible for hospice services.
Osborn and Parsons said the inspection opened their eyes to problems they were unaware of.
“In the end, we were grateful for the inspection, as hard as it was at the time,” Osborn said. “It let us know what we were up against… . It was being run into the ground.”
The hospice has since received better inspection reports.
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Evolving from a community movement in the ’70s that was aimed at transforming the experience of dying, the U.S. hospice industry has grown rapidly in recent decades and for many Americans, it has become the last step before death.
More than 46 percent of the Medicare patients who died in 2012, for example, received some form of hospice care. And between 2000 and 2012, the number of Medicare patients receiving such services had more than doubled to more than 1.2 million.
That growth stems in part from the preference of Americans, most of whom say they would prefer to die at home than in the hospital. Many families, moreover, have only reverential praise for the hospice services they have received.
“When I ran a hospice, the most common comment I got from families was ‘I wish we’d started hospice sooner,’ ” Schumacher said.
But the industry’s growth may have outpaced its ability to maintain quality.
One significant problem, according to inspectors, is the lack of experienced personnel — and in particular, trained hospice nurses. They are the backbone of the business, not only making the home visits but taking calls when they come after regular hours, determining how serious the crisis is. Hospice nursing requires a distinct kind of medical knowledge, as well as the personal skills to deal with grieving patients and families.
“The biggest problem we see — and we see it over and over — is personnel. What we’ve always said is that we’ve got more hospices than experienced people to staff them,” said Duck, the Alabama inspector. “When they need someone, they’ll hire someone out from somebody else, and that just leaves that other hospice without.”
Another fundamental problem is that hospices can boost profits by short-changing patients. Medicare pays hospice companies per patient, per day of care. For a “routine” day of care, the hospice is paid about $150, regardless of how many services the hospice provides. That means that stinting on nurse visits, for example, could boost profit margins.
If a hospice is failing its patients, problem can be detected by counting how many patients withdraw from its services before dying.
A hospice is supposed to care for a patient until they die, and indeed that is what most of them do. At a typical hospice, only about one in 10 patients is released alive. This is often because a patient’s condition improves unexpectedly, and they are no longer eligible.
But at hundreds of hospices — about 20 percent of them — more than one in four patients are discharged alive, according to Medicare statistics. Some of those hospices were too eager for business and signed up patients who weren’t actually dying, experts said. But it’s also a sign that some patients are getting poor care and leave.
Indeed, at Expect Care, two of the patients whose records were reviewed during the March 2012 inspection withdrew from the service.
The family of one heart patient declined to give a reason for withdrawing. But the patient had to be rushed to the emergency because of previously undiagnosed pleurisy, a painful inflammation of the lining of the lungs and chest. When asked if they ever called for help after hours, a family member said, “Yes, and on some occasions I never got a call back.”
“I got rid of the agency,” said the family of another patient who was dying of end-stage dementia. “We just felt they weren’t doing us any good.”
To prevent lapses in hospice care, Medicare pays the states to conduct inspections. During inspections, a sample of patients are selected for review. Some cases are reviewed by analyzing the associated paperwork; for some, inspectors make home visits.
But the funding of inspections and their relative infrequency have been a long-running, if little-noted, complaint from the state inspection agencies. Led in part by delays in certifying hospices, some hospices pay accreditation agencies, which aim for inspections every three years, to perform their reviews.
The amount of money that Medicare sets aside for hospice inspections has shrunk 9 percent in real terms over the past five years, even as the number of hospices and number of hospice patients has surged.
For 2014, Medicare budgeted $6.6 million for hospice inspections; in 2010, that figure was $7.2 million, in inflation-adjusted dollars.
A similar shrinkage has affected the overall Medicare inspection budget, too, meaning that the state budgets for inspections of all medical facilities — not just hospices — is lean and that the shortfall in the hospice budget is unlikely to be made up elsewhere. In 2014, Medicare spent $375 million for inspections of medical facilities; five years ago, that figure was $377 million, in inflation-adjusted dollars.
These budget constraints have made it hard for states to hire enough qualified inspectors to complete the inspections that are required.
“Workforce instability due to noncompetitive [inspector] salaries and hiring freezes hindered their workload completion,” state officials told the U.S. Government Accountability Office in 2009.
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Osborn and Parsons acquired Expect Care in the latter half of 2011.
Osborn is a retired real estate developer; Parsons owned a medical and clerical staffing business.
Neither had any experience owning or managing a hospice.
Shortly before the couple invested in the business, in March 2011, the hospice had an inspection — its first in six years.
Inspectors discovered some problems. The hospice lacked documentation to show that “employees were competent to perform their job skills and received training in the hospice’s philosophy and care,” they wrote. Moreover, inspectors found that much of the time that spring, when a patient called the hospice after hours, the person answering was not a registered nurse, as required.
No major patient issues were reported, however.
Osborn and Parsons said that employees told them that former administrators had strategically limited what they showed to inspectors. If hospices present an incomplete patient list to inspectors, it can hide problems.
The number of patient records that inspectors reviewed was not disclosed. It’s possible that inspectors missed trouble because they only review a sample of patient records, not all of them.
Whatever the case, in May 2011, inspectors found, without revisiting the hospice, that it had come into “substantial compliance” with regulations.
A few months later, Osborn and Parsons took an initial stake and they became full owners before the end of the year, according to documents and interviews.
No new inspection was required with the change in ownership. After receiving a complaint from a former employee in October, inspectors conducted an “abbreviated” inspection. They found problems in employee training, as before, but little else.
Then, in early 2012, former employees tipped inspectors that the hospice had more severe problems. That’s when Wetzel and another inspector visited the hospice, staying for three days.
One of the first things inspectors noted is that neither of the two doctors on staff — the medical director and the backup medical director — had hospice training, which is required. Their credentials showed no “hospice education or certification in hospice palliative care,” inspectors wrote. Both of them had been hired in 2009, but it is not clear why this problem was not flagged in the previous inspections.
Similarly, for two registered nurses at the hospice, there was no documentation of “hospice competency skills.”
“The new owners inherited a problem, and they did not have the hospice experience to know they had a problem,” said Julia Gooch, a hospice expert that the state recommended for turning around the business. “They trusted some of the people who had been working there, and they shouldn’t have.”
The previous hospice owner did not respond to messages left with their attorney. Former administrators did not return phone calls.
But Wes Gandy, who worked for three years as the hospice’s volunteer coordinator, said the business that Osborn and Parsons inherited was well-managed and that key personnel left the company shortly after they took control.
“They’d never run a hospice company,” Gandy said. “They didn’t know what they were doing, and the people who did quit soon after they bought it.”
Whatever the case, the inspectors in March 2012 repeatedly found records of patients whose calls for assistance were received by an inattentive staff, if they were received at all.
When the family of the man with the feeding tube that was oozing pus called one Sunday morning, for example, he did not receive a visit from a skilled nurse. The hospice told them to wait a day — until Monday morning — to bring the man to the doctor. Apparently deciding that the situation demanded urgency, the family rushed him to the hospital, where an examination showed that his feeding tube didn’t reach his stomach, according to the inspectors report. He died days later.
When a frail older woman complained of various problems — head and chest pains, an oxygen tank that wasn’t working — there was no documented response by the hospice either. Indeed, when the patient’s caregiver suggested the patient had a bladder infection, the hospice nurse dismissed the suspicion, according to records. A full week later, a lab test confirmed that it was.
Finally, the hospice repeatedly struggled in its efforts to help a woman with breast cancer that had spread to her liver. She repeatedly reported suffering from nausea, vomiting, breathing difficulties and pain. Despite requests over several weeks, the hospice refused to transport her to the hospital to tap the fluids that were building in her abdomen, according to the nursing notes.
On Jan. 4, “abdomen is tighter this visit,” according to the notes.
On Jan. 18 and again on Jan. 23, “abdomen [is becoming tighter] with each visit,” the nurse noted.
On Jan. 29, the day before she died, “stomach is very firm & it is impeding effort to breathe.”
In response to the family’s request that the fluids be drained, hospice workers said it would be difficult to get the patient safely to the hospital, and besides, the fluids might return rapidly, according to the patient’s daughter, who was interviewed by inspectors.
The day before her mother died, the patient’s daughter called the hospice but “they did not want to come out,” according to the inspection report. Eventually, with the patient in “a lot of pain,” a nurse came, ordered morphine and then left.
“I expected them to stay with us when it’s critical. It kind of frustrated me. We called and we didn’t know what was going on. I didn’t know what to do,” the daughter told inspectors.
Eventually, after her mother started “gurgling” a few hours before her death, a nurse came out to the house.
After the poor inspection, the Expect Care license was downgraded to a “probational” status. The state limited the number of patients it could accept. The hospice was required to hire a consultant for two years.
The company replaced the medical directors who lacked hospice experience with one who did.
“We are dedicated to turning this business around,” Osborn said, noting it still loses money. “After that inspection, we could have quit. A lot of people would have. We had to change the culture of the place, and I think we have.”
For Wetzel and Duck, who said they regularly saw both the good and bad of hospice care, the need for more frequent inspections seems obvious.
“Once a hospice opens and gets inspected, well, six years is a long time,” Wetzel noted. “They can cut staff. They can cut corners. And unfortunately, whether it’s because they don’t know any better, or they just look at it as a business, that is what some of them will do. There is no way of knowing.”