Stories About Mistreatment In Hospice Care Are A Cry For Government To Act

Some providers are terrific, some are terrible. And regulators haven't kept up.

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A federal watchdog in July released a report on hospice care that was based on five years of inspections by state and independent organizations. The findings were pretty alarming.

Twenty percent of hospice facilities had serious deficiencies, like ignoring care plans or failing to vet staff, that could lead to patient harm. And just to make clear that the danger wasn’t purely hypothetical, the federal report cited a dozen real-life stories of patients who had suffered.

One had developed maggots around the insertion point for a feeding tube, while another’s untreated pressure ulcers had turned into gangrene, requiring a lower leg amputation. A third patient had been hospitalized for pelvic injuries that staff believed were the results of sexual abuse.

Bad things happen in medical settings all the time, of course. (Just google “nursing home abuse” or “hospital mistreatment.”) And the recent surge in hospice use — which has basically doubled since 2000 — is by all accounts a positive development. It’s a sign that the medical establishment is finally paying attention to comfort, and not just cures, especially for people near the end of life.

But like any fast-growing field, hospice care is attracting all kinds of new providers ― some terrific, some terrible. As this report made clear, federal regulators have not kept up with the pace of the industry’s rapid expansion.

In some cases, it’s because they don’t have the authority they need. In other cases, it’s because they are not using the authority they have. 

What The Federal Report Revealed

The report (which actually actually came in two parts) was from the Inspector General of the Department of Health and Human Services. HHS oversees Medicare, which offers a hospice benefit to seniors and, as a result, is the primary payer of hospice care in the U.S.

July’s report was the most recent in a series of hospice care assessments by the inspector general. But it was the most comprehensive to date, because it was the first to draw upon inspection and complaint reports from both state agencies and independent accreditation organizations ― thereby giving a full, nationwide picture of the hospice industry. 

That picture includes high-quality care that, for many patients and their families, is a godsend. “There are a lot of organizations providing hospice care that are doing a great job,” Julie Carter, senior federal policy associate at the Medicare Rights Center, told HuffPost. 

Hospices need to be held accountable for the care that they give. Nancy Harrison, office of the HHS inspector general

Still, the inspector general’s office was not the first investigator to uncover episodes of abuse or mistreatment. In October 2017, for example, Kaiser Health News found hundreds of instances where hospice patients who needed pain treatment couldn’t get it because providers were unavailable or unresponsive. 

Lack of attentive after-hours or weekend care is a chronic problem with hospice providers, even though pain and suffering don’t confine themselves to the work week. Bad communication and poor training are other issues, which frequently leave even well-intentioned caregivers unable to attend to patient needs, even though the whole point of hospice care is to emphasize comfort and emotional support.

In one episode that the inspector general cited, a patient in assisted living was in great pain, crying out, in the middle of the night. A nurse on duty gave the order to give the patient some anti-anxiety medication but there was none available and nobody could get their hands on more until the morning.

“Hospices need to be held accountable for the care that they give,” Nancy Harrison, the deputy regional inspector general who supervised the reports, said in a HuffPost interview. 

How The Federal Government Could Respond

Many of these problems reflect deeper, longstanding problems with American health care, like the lack of coordination among facilities and professionals, as well as the poor caregiver pay that makes it difficult for providers to attract and retain the best workers. 

But other parts of the health care industry, like skilled nursing facilities, are subject to the same pressures and the federal government still regulates them more aggressively. The inspector general has recommended a series of steps that would apply the same kind of treatment to the hospice industry.

One change would be to adjust the penalties available to regulators. Federal officials overseeing skilled nursing facilities and hospitals can apply a series of gradually increasing sanctions depending on the severity, frequency and history of deficiencies. Those sanctions include public warnings and civil penalties, with expulsion from Medicare as a final recourse. 

Regulators overseeing hospices don’t have those options. Instead, they have a choice of two extremes, allowing the program to stay in Medicare or kicking it out altogether, and regulators are frequently reluctant to shut down programs when the supply of hospice care is already too low in some places.

The inspector general also recommended making it easier for patients and families to figure out which hospice is best for them. HHS already runs Hospice Compare, a website for comparing providers, but the site doesn’t include the actual assessments from state and private inspectors. The inspector general thinks it should.

“When your loved one is dying, you’ll do anything to provide comfort and peace, and part of that may be finding the best hospice available,” Harrison said. “But right now there are not the tools for that and that is long overdue.”

Where The Industry Agrees And Where It Doesn’t

In principle, the hospice industry supports the general approach that the inspector general’s report outlined. 

“I think any instance of substandard care, not answering a call or not addressing an infection, is one too many,” Edo Banach, president of the National Hospice and Palliative Care Organization, told HuffPost. “We want to work with government to shed light on poor performers.”

But differences in opinion emerge when it comes to details. 

In particular, Banach says he is wary of saddling providers with too much paperwork or subjecting them to financial penalties, at least for now, in part because some hospice providers are small operations that already struggle with administrative requirements and lack the financial resources to handle even moderate penalties. He said he worries especially about rural areas, where finding hospice can already be difficult.

As for adding assessments to the Hospice Compare website, the big sticking point there is that some hospices get certification from state agencies while others go to those private accrediting organizations. (In some states, hospices have a choice.) HHS has legal authority to publish the state assessments on Hospice Compare but, at least for now, it doesn’t have that same authority for the private ones.

The inspector general recommended that the federal government push to change that policy, and said the HHS should post the state assessments, since it can do that already.

“We recognize that [HHS] cannot release all of the data, but if it’s concerned about providing uneven data, they could always just post an explanation,” Harrison said.

What The Administration Is (And Isn’t) Doing

The industry, by contrast, said the publication of assessments should wait until the federal government can put out all the information and, in response to the inspector general’s report, officials at HHS said they agree. Seema Verma, the HHS official in charge of Medicare, said that posting only the state surveys would create a “skewed” picture for patients and their families.

Verma said that the administration would consider pushing for legislation giving HHS authority to put the private assessments on Hospice Compare. The rule change seems possible, given that improving hospice care appears to have bipartisan backing on Capitol Hill.

And Verma made clear that HHS was accepting several other inspector general recommendations, including some that called for more aggressive outreach to patients and their families about their rights.

At least so far, the regulation of hospice care hasn’t been politicized in the way so many other health care issues in Washington have ― and that suits advocates just fine, because it makes it possible to talk about both hospice strengths and weaknesses.

“We would love to see improvements in hospice,” Carter said, citing in particular the need to monitor hospices more aggressively and better publicize patients’ legal rights. “But we want to make sure people know hospice is available and that it really does wonderful things for people.”