How California Can Fix Its Hospice System and Reduce Care Inequities

Closeup of a young man holding the hand of an old woman with affection.
Hospice care can provide immense comfort to terminally ill patients, when done right. But unchecked growth and lack of oversight has led to widespread problems in California’s hospice industry. Photo by iStock/nito100.

As hospice care has expanded in California, so have complaints of fraud and malpractice.

A federal report last year identified California as leading the nation in serious complaints and inspection concerns about subpar care at hospices. Senior advocates, such as those at the California Senior Medicare Patrol, weren’t surprised by the findings, noting that they regularly field hospice-related complaints from seniors and their family members. A recent Los Angeles Times investigation pointed to hundreds of complaints about patient mistreatment and questionable practices by hospice providers in the state.

Advocates for seniors say unscrupulous hospice providers have signed non-terminally ill patients up for end-of-life care they didn’t need, and then billed Medicare for services and equipment. Patients were often duped into enrolling in hospice with promises of “freebies” such as housekeeping help or personal protective supplies, not realizing they’d signed away their rights to receive life-saving medical care, which isn’t covered when people are in hospice.

Seniors from all walks of life fall victim to these fraudulent practices, but those with limited English proficiency are especially vulnerable, said Sandy Morales, manager of a Medicare fraud hotline operated by California Senior Medicare Patrol. More than 44 percent of Californians speak a language other than English at home, according to the U.S. Census Bureau. Some fraudsters appear to target these seniors, knowing they may be more easily duped into signing paperwork they don’t understand because it’s in English, said Morales. Hospice fraud is one of the top complaints callers report to the federally funded hotline, with more than 50 reports registered last year through September. Many more likely go unreported, she said.

When done right, hospice care can provide immense comfort to terminally ill patients and their families. Recipients get a range of services to make their final months and days easier, including nursing care, pain management, palliative care, and spiritual and emotional support. Hospice is usually provided to patient’s in their own home, or at the nursing home or assisted living facility where they reside.

But fraud, malpractice, unchecked growth, and lack of effective oversight from the state and federal authorities threaten the wellbeing of California’s hospice patients, said Michael Connors, a patient care advocate with California Advocates for Nursing Home Reform.

“The whole system needs to be completely revamped,” he said. The state has licensed “hundreds of for-profit operators that are in the hospice business for all the wrong reasons. 

“The current situation,” Connors added, “is intolerable.”

Here are a few solutions proposed by Connors, Morales and others familiar with California’s hospice system:

Implement a moratorium on new hospices

California has seen explosive growth in hospices in the past decade. Most of the growth has been in for-profit hospices. Today, California has around 1,200 Medicare-certified hospice providers, with around half in Los Angeles County, where the number of hospices has risen six-fold in the last 10 years, according to the Los Angeles Times. The increase is so rapid that regulators can’t keep up, said Holly Swiger, a long-time hospice consultant. She and Connors agreed that a moratorium would give the state breathing room to assess existing providers, handle complaints and determine whether California even needs more hospices.

Sarah McSpadden, president and chief executive officer of Elizabeth Hospice, a nonprofit hospice in San Diego, said California might even consider implementing a “certificate of need” law. These laws are in effect in around a dozen other states. and tie the number of hospices allowed to open to the determined need of the population in a given area.

“If California limited the number of hospices, they would be able to go and look at the hospices they have more often, evaluate what hospices are actually doing out there, and hold them accountable for the care they’re delivering,” McSpadden said. She said her hospice regularly takes in patients who received inadequate care from for-profit hospice providers that are poorly regulated.

Improve oversight

More than 80 percent of California hospices are inspected by private accreditation agencies rather than state regulators to ensure compliance with federal standards. That system sets up a financial incentive for accreditors to be lenient on hospices, because the providers select and pay for the inspectors themselves, Connors said.

“It’s not likely that fraud and neglect will diminish if hospices can choose to be overseen by private accrediting organizations,” he said. “We shouldn’t be allowing the fox to guard the hen house.”

Instead of hospices paying accreditation agencies, California could impose licensing fees on hospice operators to fund for more state inspectors. McSpadden agreed the private accreditation system creates a conflict of interest. She said in work she’s done as a consultant to new hospices, she’s encountered subpar providers who were able to shop around for a private accreditor and get a glowing inspection report. State regulators, on the other hand, are known to be very tough, but they rarely do the inspections, she said.

Investigate complaints promptly

On average, complaints to the state Department of Public Health about hospices in California remain unresolved for more than a year, Connors said. By that time, it’s usually too late to confirm the veracity of complaints and the patient is already deceased. California needs to speed up its complaint investigation process, Connors and others agreed.

Additionally, federal authorities should do more to crack down on fraudulent marketing scams, such as those misrepresenting their services to potential hospice patients. And government investigators must go after small hospices as well as the larger ones they currently target, because that’s where a lot of the fraudulent activity seems to be occurring, Swiger added.

Set higher standards

The requirements for opening a hospice are minimal, several experts said. People running a hospice do not need to have experience in the hospice industry or meet educational qualifications.

McSpadden said she met people in her past consultancy work with no background in medical care who wanted to open a hospice because they saw it as an easy way to make money.

“There should be more eligibility requirements,” she said. “You wouldn’t want someone to start a hospital that wasn’t a clinician, that didn’t really know how to deliver care.”

Increase transparency and public education

To fully address California’s hospice crisis and protect patients, the public needs to be better informed about hospice care generally, and have access to reliable information about hospice quality, experts agreed.

On the one hand, that means improving the frequency and reliability of inspections, and making all the reports available to the public, Connors said.

Californians also need to know what to look for in a good hospice, how to choose one, and how to make a complaint when something goes wrong. And it’s important that the public understand what hospice is, and what it isn’t, as that can lead to misunderstandings about what patients are supposed to receive, said Sheila Clark, president and CEO of the California Hospice and Palliative Care Association. For example, hospice does not provide 24-hour custodial care. Instead it provides a range of intermittent services depending on the patient’s needs.

Swiger proposed a public education campaign, and greater efforts to inform nurses and physicians in training about hospice and palliative care so they can advise patients.

It’s also important for people to guard their Medicare numbers and regularly review their Medicare statements to ensure there are no mysterious charges and activity, such as unexplained hospice-related bills, said Morales with Senior Medicare Patrol.

Resources for more information on hospice care:

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