No One Is Coming?: Hospice Patients Abandoned At Death's Door

No One Is Coming: Hospice Patients Abandoned At Death's Door

Have you or your loved one received hospice care?

Dearth Of Hard Data

How often hospices fail to respond to families or patients is an understudied problem, experts say, in part because it's hard to monitor. But a recent national survey of families of hospice patients suggests the problem is widespread: 1 in 5 respondents said their hospice agency did not always show up when they needed help, according to the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, designed by the Centers for Medicare & Medicaid Services.

"That's a failing grade," Teno said. "We need to do better."

Hospice care in the US got its start in the 1970s, driven by religious and nonprofit groups aimed at providing humane care at the end of life. Today, however, many providers are part of for-profit companies and large, publicly traded firms. It's a lucrative business: For-profit hospices saw nearly 15 percent profit margins on Medicare payments in 2014, according to the Medicare Payment Advisory Commission.

Most families are happy with hospice, according to the CAHPS survey. In data collected from 2015 to 2016 from 2,128 hospices, 80 percent of respondents rated hospice a 9 or 10 out of 10.

Kaiser Family Foundation polling conducted for this story found that out of 142 people with hospice experience, 9 percent were 'dissatisfied' and 89 percent 'satisfied' with hospice. (Kaiser Health News is an editorially independent program of the foundation.)

Indeed, many people give hospice glowing reviews. Lynn Parés, for instance, gushed about her experience from 2013 to 2014 with Family Hospice of Boulder, Colo. When Parés? 87-year-old mother cut her leg, staff came daily to treat the wound. A nurse visited every day in the dying woman?s last week of life. The hospice also provided family counseling, spiritual guidance and volunteers who surrounded her mother's bedside, singing old-time songs.

"They were in constant contact with us," Parés said of the hospice. "It's amazing to me how much heart there is involved in hospice care." After her mother died, Parés and her siblings donated part of their inheritance to the hospice. "I can never say enough good about them."

Following industry trends, the small, family-owned Boulder company subsequently got acquired by a large regional chain, New Century Hospice, in 2015. As the industry grows ? hospice enrollment has more than doubled since 2000 ? some companies are not following through on their promises to patients.

For instance, data show many hospices fail to provide extra care in times of crisis. To get Medicare payments, hospices are required to offer four levels of care: routine care, which is by far the most common; respite care, to give family caregivers a break for short time periods; and two levels of so-called crisis care, continuous care and general inpatient care, when patients suffer acutely. But 21 percent of hospices, which together served over 84,000 patients, failed to provide either form of crisis care in 2015, according to CMS.

While there's no guarantee that a given patient will need crisis care, not offering any such care for an entire year raises a concern about 'whether they're providing adequate symptom control,' Teno said.

"I'd be very surprised if there wasn't a significant proportion of those people ? at least 5 percent ? "who really needed that service," she said.

Other research has found troubling variation in how often hospice staff visit when death is imminent. A patient's final two days of life, when symptoms escalate, can be a scary time for families, who often need professional help, Teno said. She and her co-authors found that 281 hospice programs, or 8.1 percent of the hospices studied, didn't provide a single skilled visit ? from a nurse, doctor, social worker or therapist ? to any patients who were receiving routine home care, the most common level of care, in the last two days of life in 2014.

Regardless of how often they visit, hospices collect the same flat daily rate from Medicare for each patient receiving routine care: $191 for the first 60 days, then $150 thereafter, with geographic adjustments as well as extra payments in a patient's last week of life.

I called the hospice, and I said, "We're in trouble. I need help right away." I waited and waited. They never called back.
Laure Fuerstenberg, of St. Steven, Minn., widow of hospice patient Leo Fuerstenberg

Overall, 12.3 percent of patients on routine home care received no skilled visits in the last two days of life, the study found. Patients who died on a Sunday had the worst luck: They were more than three times less likely to have a skilled visit than those who died on a Tuesday. Teno said that gives her a strong suspicion that missed visits stem from chronic understaffing, since hospices have fewer staff on weekends.

In Minnesota, Fuerstenberg's pleas for help went unanswered on a Sunday evening; her husband died just after midnight on Monday. She was appalled when she received a bill for care the agency said occurred on that day.

?When they got paid for nothing, it was like a slap in the face,? said Fuerstenberg, who filed a complaint with Minnesota health officials last year. She heard nothing about the case from hospice officials and didn?t learn it had been investigated until she was contacted by Kaiser Health News.

Left In The Lurch

In St. Paul, Va., a small town in the Appalachian mountains, Virginia Varney enlisted Medical Services of America Home Health and Hospice, a national chain, to care for her son, James Ingle, 42, who was dying of metastatic skin cancer. On his final day, Christmas Day 2012, he was agitated, vomiting blood, and his pain was out of control. Varney called at least four times to get through to hospice. Hours later, she said, the hospice sent an inexperienced licensed practical nurse who looked 'really scared' and called a registered nurse for backup. The RN never came. Ingle died that night.

James Ingle, shown in an undated family photo, died of cancer on Christmas Day 2012. The day he died, he was vomiting and his pain was out of control. His family made several frantic calls to hospice, but couldn't get a registered nurse to visit the house to help. (Courtesy of Virginia Varney)

Varney said she felt numb, angry and 'very disappointed' in the hospice care: "It's like they just didn't do anything. And I know they were getting money for it."

"They told me 24 hours a day, seven days a week, holidays and all," Varney said. "I didn't find that to be true."

An investigation by Virginia state inspectors, which corroborated Varney's story, revealed hospice staff changed the records from that night after the fact. The registered nurse was fired that February. The hospice declined to comment for this story.

Just how often are hospice patients left in the lurch? Inspection reports, performed by states and collected by CMS, don't give a clear answer, in part because hospices are reviewed so infrequently.

Unlike nursing homes, hospices don't face inspection every year to maintain certification. Based on available funding, CMS has instead set fluctuating annual targets for state hospice inspections. In 2014, CMS tightened the rules, requiring states to increase the frequency to once every three years by 2018.

Often, promising to do better is the only requirement hospices face, even when regulators uncover problems. The Office of the Inspector General at the federal Department of Health and Human Services has called for stricter oversight and monitoring of hospice for a decade, said Nancy Harrison, a New York-based deputy regional inspector general. One problem, she said, is there is no punishment short of termination ? barring the hospice from receiving payment from Medicare or Medicare ? which is disruptive for dying patients who lose service.

CMS records show termination is rare: Through routine inspections as well as those prompted by complaints, CMS identified deficiencies in more than half of 4,453 hospices from Jan. 1, 2012, to Feb. 1, 2017. During that same time period, only 17 hospices were terminated, according to CMS.

In Alaska, officials at Mat-Su Regional Home Health & Hospice, which cared for Bob Martin, cited patient privacy rules in declining to comment about his case. But "[we] strengthened our policy and procedures" as a result of the investigation, administrator Bernie Jarriel Jr. said in an email. "Members of our caregiving team have been re-educated on these practices."

In Minnesota, officials with the local Heartland Home Health and Hospice agency referred questions to its corporate owner, HCR ManorCare of Toledo, Ohio. Officials there did not respond to multiple requests for comment about Leo Fuerstenberg's care. CMS documents indicate the nurse who missed 16 messages "was re-educated on responsibilities of being on call."

They told me 24 hours a day, seven days a week, holidays and all. I didn't find that to be true.
Virginia Varney of St. Paul, Va., mother of hospice patient James Ingle

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No One Is Coming: Hospice Patients Abandoned At Death's Door

Dearth Of Hard Data

Left In The Lurch

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