More than a million times a year, a terminally ill patient in the United States is enrolled in hospice care. Each time, the family confronts a decision that, while critical, often must be made almost blindly: Which hospice to hire?
A boom in the industry allows patients to choose from an array of hospice outfits, some of them excellent. More than a thousand new hospices have opened in the United States in the past decade. But the absence of public information about their quality, a void that is unusual even within the health-care industry, leaves consumers at a loss to distinguish the good from the bad.
Though the federal government publishes consumer data about the quality of other health-care companies, including hospitals, nursing homes and home health agencies, it provides no such information about hospices.
After years of public pressure, Congress in 2010 required that the government publish information about hospice quality, but the Medicare agency said in May that such consumer information would not be forthcoming until 2017 — at the earliest.
Similarly, state records of hospice inspections are often unpublished, sparse, and, when they are available, difficult to find and understand. Government inspections of hospices have typically been scheduled about every six years, though Congress in September called for more frequent checks.
“Unfortunately, the evidence-based data about hospices is simply not available,” said Naomi Naierman, president of the American Hospice Foundation, a consumer advocacy group.
A report from the congressional watchdog group that oversees Medicare put it this way: “We do not have sufficient data to assess the quality of hospice care provided . . . because publicly reported information on quality is generally unavailable.”
The absence of information forces families to speculate and hope for the best — to roll the dice — when choosing medical care for a loved one facing death.
It also allows hospices that offer poor service to escape detection, while the care at better hospices goes unrecognized.
Using Medicare data that the government has yet to publish in a form that consumers can easily use, The Washington Post has created a guide for hospice patients and their families that offers insights into the operations of almost every hospice in the United States. While not comprehensive, the guide includes measures that experts say can help gauge the quality of care.
The information was gleaned from reports that hospices are required to file with Medicare, and it relies on them for accuracy.
Because hospices can vary widely in quality, consumers should use care when choosing one. Indeed, according to a battery of Medicare statistics, some appear to be offering scant care: 18 percent of hospices do not provide continuous nursing care or inpatient care for patients in crisis; a similar proportion regularly fail to have a registered nurse visit the patient in the 48 hours before death; and at hundreds of hospices, more than a third of patients drop hospice services before death — a sign that the patients may not have been getting adequate care.
The reasons that some hospices stint on care may be at least partly financial. Medicare, the chief source of industry revenue, pays hospice companies per day of care — about $155 for a “routine” day — regardless of how much care is actually provided. That means that the less a hospice spends on nursing and other services, the more it can profit.
The hospice “came in and promised the world,” said Janice Holan, whose husband, a lung cancer patient, died at home under the care of a Pittsburgh-area hospice. “And when it really mattered, they delivered nothing.”
Holan, a nurse, had tried to make sure the hospice company would provide good care. It had been recommended by her husband’s doctor, and when the company sales representative turned up at their home, Holan asked several questions.
Was the hospice doctor reliable? Could her husband get round-the-clock medical care at his bedside when necessary? Did they have enough nurses?
Yes, the representative said, and the outfit, known as Horizons Hospice, was hired.
“I’d heard of them but didn’t know much more,” Holan said.
On the night before he died, Robert Holan was in pain, coughing and choking. A nurse from the hospice visited the home and discovered that he lacked needed medicines — medicines that should have been there all along, according to family members, who have initiated a lawsuit against the hospice.
The nurse could not get the right medicines sent because the hospice doctor was unreachable and Holan’s primary-care doctor was out of the country. After about a half-hour visit, the nurse then said, “Sorry,” and just left, said Janice Holan and her daughter Darlene.
“It was horrible,” Janice Holan said. “My husband was suffering. There was nobody here.”
Hospice officials declined to comment.
The number of Americans receiving hospice services has surged in recent decades, and this is at least in part because many have experienced good care. Indeed, some families offer almost reverential praise for the services they have received.
Take, for example, Robert Campopiano of Falls Church, Va. Years ago, both of his parents received hospice care. So did his mother-in-law.
At 74, stricken with ALS, or Lou Gehrig’s disease, Campopiano received hospice care from Capital Caring, a large nonprofit provider in the Washington region.
“Every experience we’ve had with hospice has been wonderful,” his wife, Lynn, said.
Campopiano, a retired government worker and a retired Marine, entered hospice care in February after breathing troubles landed him in the hospital for nine days. During a visit this summer from his hospice nurse, Jessi ZuHone, Campopiano had a feeding tube and, because his breathing was affected by the disease, he typed most of his remarks into a computer that reproduced his words in a robotic voice.
Asked about his decision to enroll in hospice care, Campopiano typed into the computer keyboard. The robotic voice said, “It’s the way life is,” and Robert gestured, shrugging and turning his palms up. He smiled.
The Campopianos got a call every morning between 9 and 10 from the hospice to check his status. During one of the morning calls, Lynn reported a stomach problem. Another time, she reported that Robert seemed more dependent on the oxygen machine. Both times, the hospice sent out a nurse or another staff member to check in.
If nothing was wrong, the Campopianos received a nursing visit once a week, and a social worker and chaplain arrived twice a month.
“It’s very comforting to have them come out, as much for me as for him,” Lynn said. “If I needed someone in the middle of the night, I knew they would be there.”
Robert died this month with his wife and children nearby. Toward the end, hospice nurses were with him continuously, Lynn said, offering “phenomenal” support.
The fact that the Campopianos found a hospice they like may be entirely a matter of chance.
“I honestly don’t know how we ended up with Capital Caring,” Lynn said. “I think we were assigned them at the hospital? Maybe it was the luck of the draw?”
The Post’s consumer guide shows information that can help identify hospices that provide suitable care, according to experts. For example, two of the measures presented in the database were proposed as quality measures by experts working for MedPAC, which provides congressional oversight of Medicare.
The database shows, among other things, whether the hospice has provided more intense levels of care for patients suffering a crisis; how much it spends on nursing visits per patient; and whether it has won approval from one of three outside accrediting agencies, the Joint Commission, the Accreditation Commission for Health Care and Community Health Accreditation Program, or CHAP.
The figures reflect positively on Capital Caring’s Capital Hospice in Virginia: It has been around 30 years, it has provided patients with both types of crisis care, and it has won accreditation from CHAP.
By contrast, the hospice that served the Holans has provided no or negligible amounts of crisis care to patients, according to the Medicare data.
Other hospices that the Holans might have turned to appear better, according to the statistics. One, for example, is Forbes Hospice, which has been around at least 31 years, provides crisis care and spends more than is typical on nursing. Another is Gateway Hospice, which pays more for nursing per patient day than others in the state.
The chief operating officer of Gateway, Mary Tobin, noted that the industry is changing into “big business.”
During her 15 years in the field, Tobin said, she has come into contact with other hospices that “base their decisions on finances and resource constraints. But you can’t go wrong if you put the patient first.”
No hospice is perfect, however. It is an inherently human enterprise, and even good hospices can make mistakes.
Capital Caring makes some extra attempts to avoid them. It has created a call center from which operators can call every patient once or twice a day. Administrators generate a daily report of patients whose pain has not been adequately controlled. (On a recent visit, only about 1 percent of its 1,200 patients fell into that category.) That list is sent to managers, and those patients receive extra attention.
While such efforts are expensive, Capital Caring benefits from its size and donations, which amount to about 10 percent of its $75 million annual operating expenses.
Despite the public’s interest in more information about hospice quality, Medicare’s efforts to define and measure quality at the nation’s hospices have been halting.
The Medicare program has been trying since 2000 to come up with ways for hospices to measure and report the quality of their patient care. The federal government has invested hundreds of thousands of dollars in attempts to statistically define hospice quality.
In 2005, Medicare formally proposed that “hospices collect the data necessary to evaluate the quality of care they are providing and use this information in a systematic and retrievable way.” It wasn’t until 2008 that the proposal was adopted, however, and it did not specify what data would be collected.
In 2010, with the Patient Protection and Affordable Care Act, Congress called for hospices to report some information about quality — information that would be defined by Medicare.
But since then, progress has been delayed.
In 2012, Medicare specified one quality statistic, related to how much pain patients were experiencing, for hospices to collect and report.
In May, however, Medicare changed course, dropping that statistic and specifying seven other quality measures. It also announced that any such information will not be available to the public until 2017 at the earliest.
“We recognize that public reporting of quality data is a vital component,” the agency leaders wrote, also calling for surveys of patients. But “it is critical to establish the reliability and validity of the [quality] measures.”
It is difficult for a variety of reasons to measure hospice quality, experts said. Many patients cannot communicate; if you ask family members instead, their perceptions can vary widely.
But the vast growth of the hospice field — nearly every other Medicare patient enrolls in hospice care now — makes the need for more public information urgent, according to consumer advocates.
Robert Krughoff, founder of checkbook.org, a consumer advocacy and service group, said that in a few states, including Florida, a little hospice information has become public. But even in those places, he said, there is very little to go on. Families are left to judge a hospice in the same way they might hire other household help — by asking friends and family for recommendations.
“It’s the same thing you do when you hire a roofer or a landscaper,” Krughoff said. “It just happens that in the health-care field, the stakes are very, very high.”
On the night before Robert Holan died, the harried nurse from the hospice discovered that the “comfort kit” — the emergency medicines many home patients are equipped with — was not in the home.
The nurse, who introduced himself as “Michael,” needed a drug called atropine from the kit to ease Holan’s breathing, coughing and choking, Janice and Darlene Holan said.
But when the nurse reached the hospice doctor’s office, the doctor was “not to be bothered,” Michael said, according to Janice and Darlene.
Before leaving, family members said, Michael told them: “ ‘I’m so sorry. I can’t do anything.’ ”
A few months later, the family learned that the hospice doctor — the one who could not be reached — had been considered by authorities to be one of the largest sources of illegal opiates in the Pittsburgh area. Oliver Herndon is serving an 11-year sentence for fraud related to pain-killer prescriptions.
“I’m a believer in hospice,” Janice Holan said. “As a nurse, I know how much it can help families. But when he was dying, and when we really needed them, they were gone. And we had no way of knowing.”