In the almost 20 years that Megan Stainer labored in nursing houses in and round Detroit, she might nearly all the time inform which sufferers close to loss of life have been receiving care from nonprofit hospice organizations and which from for-profit hospices.
“There were really stark differences,” mentioned Ms. Stainer, 45, a licensed sensible nurse. Looking at their medical charts, “the nonprofit patients always had the most visits: nurses, chaplains, social workers.”
The nonprofit hospices responded rapidly when the nursing house workers requested provides and gear. By distinction, she mentioned, “if you called and said, ‘I need a specialized bed,’ with for-profits it could take days — days when the patient is in a bed that’s uncomfortable.”
Ms. Stainer, now a non-public obligation nurse and licensed loss of life doula in Hamburg, Mich., additionally discovered nonprofits extra keen to maintain sufferers enrolled and for-profits extra liable to “live discharge” — eradicating sufferers from hospice ostensibly as a result of they not met the standards for declining well being, then re-enrolling them later.
“It seemed like people were being discharged when they still needed their services,” Ms. Stainer mentioned. “There never seemed to be a logical reason.” But lengthy enrollments and dwell discharges will help hospices enhance income and keep away from monetary penalties, analysts have identified.
Researchers have for years reported that there are, certainly, substantial variations general between for-profit and nonprofit hospices; a brand new examine based mostly on household caregivers’ experiences supplies extra proof.
Medicare started protecting hospice care 4 a long time in the past, when most hospices have been nonprofit neighborhood organizations relying closely on volunteers. It has since change into a development business dominated by for-profit companies.
In 2001, 1,185 nonprofit hospices and simply 800 for-profits supplied look after Americans with terminal diseases who have been anticipated to die inside six months. Twenty years later, nearly three-quarters of the nation’s 5,000-plus hospices have been for-profits, many affiliated with regional or nationwide chains.
The shift was in all probability inevitable, mentioned Ben Marcantonio, interim chief govt of the National Hospice and Palliative Care Organization, which represents each sorts together with some authorities hospices. Roughly half of Americans who die every year now flip to hospice. The variety of Medicare beneficiaries enrolling in hospice rose to 1.7 million in 2020 from 580,000 in 2001.
“The growth of for-profit providers is largely responding to growing need,” Mr. Marcantonio mentioned. “It’s evolved within a health care system that not only accepts but encourages for-profit providers. To think hospice would be exempt from that forever probably wasn’t realistic.”
Yet the proliferation of for-profit hospices has stoked fears that dying sufferers and their households are being shortchanged to enhance firms’ backside strains.
The most up-to-date report from MedPAC, the unbiased company advising Congress on Medicare spending, discovered that in 2020, for-profits acquired 20.5 p.c extra from Medicare than they spent offering providers. The margin for nonprofits, whose each day per-patient expenditures are larger, averaged 5.8 p.c.
“We’re not going to get profiteering out of the business until we make changes,” mentioned Larry Atkins, chief coverage officer of the National Partnership for Healthcare and Hospice Innovation, which represents about 100 nonprofit hospices.
He acknowledged, solely a bit grudgingly, that “there are a lot of sophisticated players on the for-profit side that do a decent job.”
Barbara Reiss found that in 2017, when her 85-year-old mom was dying of most cancers at her house in River Ridge, La. A for-profit hospice proved “very responsive to us,” she mentioned, even when the household known as for recommendation at 2 a.m. The hospice supplied all the mandatory provides and medicines and despatched nurses commonly.
“When we were really having trouble, they came,” Ms. Reiss mentioned. Her mom died peacefully, and the household turned to the identical for-profit hospice three years later, when her father died in assisted dwelling at 95.
But quite a few research have documented that as a bunch, nonprofits present higher care. All hospices inside a geographic space obtain the identical each day fee per Medicare beneficiary, however sufferers enrolled in nonprofits obtain extra visits from nurses, social staff and therapists, based on a 2019 examine by the consulting agency Milliman.
For-profits usually tend to discharge sufferers earlier than they die, a very distressing expertise for households. “It violates the implicit contract hospice makes, to care for patients through the end of life,” Dr. Atkins mentioned.
Dr. Joan Teno, a Brown University well being coverage researcher, and her group reported in 2015 on these “burdensome transitions,” wherein sufferers have been discharged, hospitalized after which readmitted to hospice.
That occurred to 12 p.c of sufferers in for-profits affiliated with nationwide chains, and to 18 p.c of sufferers enrolled in for-profits that weren’t chain-affiliated — however to only one.4 p.c of sufferers in nonprofit hospices.
Dr. Teno’s newest examine, undertaken with RAND Corporation, analyzes the household caregiver surveys that Medicare launched in 2016. Using information from 653,208 respondents from 2017 to 2019, the researchers ranked about 31 p.c of for-profit hospices as “low performers,” scoring properly under the nationwide common, in contrast with 12.5 p.c of nonprofits.
More than a 3rd of nonprofits, however solely 22 p.c of for-profits, have been “high performers.” In 2019, the Department of Health and Human Services’ inspector normal’s workplace additionally reported that the majority hospices it recognized as low-performing have been for-profits.
Apart from such variations, the hospice business has been suffering from fraud in a number of states. Investigations by The Los Angeles Times in 2020 and by the state auditor discovered that scores of recent for-profit hospices have been getting licensed and billing Medicare in California.
The quantity far outstripped want, and dozens of hospices shared frequent addresses, the auditor famous, concluding that “numerous indicators suggest large-scale hospice fraud and abuse” in Los Angeles County. Last 12 months, the state imposed a moratorium on hospice licenses.
In November, nationwide hospice associations urged Medicare to take motion in Nevada, Arizona and Texas, the place comparable patterns of development and abuse have emerged.
Researchers and critics have additionally raised alarms about non-public fairness companies buying hospice organizations and, intending to resell them inside just a few years, decreasing prices by measures like chopping workers. Most of these acquisitions have been beforehand nonprofits.
Advocates, researchers and business leaders have lengthy lists of reforms they assume will struggle fraud and enhance providers, from strengthening the way in which Medicare conducts high quality surveys to shifting from a per-diem fee mannequin to extra individualized reimbursement.
“It’s clear we need to strengthen oversight, but we must also modernize payment programs to meet the needs of patients and make it harder for people to game the system,” Representative Earl Blumenauer, an Oregon Democrat who has lengthy been concerned in end-of-life laws, mentioned in an electronic mail.
Meanwhile, households looking for dependable, compassionate hospice look after family members have to undertake analysis, at a time once they shouldn’t should, to pick out a supplier. “It’s not as simple as avoiding all for-profits,” Dr. Teno mentioned. “Because of the variations, you have to really look at the data.”
The Medicare.gov web site notes not solely which hospices are nonprofit but additionally different high quality measures. (The National Hospice Locator additionally supplies such data, and the CaringInfo website from the National Hospice and Palliative Care Organization provides normal steering.)
Dr. Teno suggested warning if greater than 40 p.c of a hospice’s sufferers have dementia or are in assisted dwelling amenities or nursing houses, each related to larger revenue margins.
Quality hospices present not solely “routine home care,” the commonest kind of hospice service, but additionally larger ranges of care when wanted, together with inpatient providers. Look for a hospice with a four- or five-star ranking, she added, though some geographic areas lack one.
Most household caregivers nonetheless give hospice care excessive approval rankings, regardless of its modifications and issues, however the want for enchancment is evident.
“It’s a small segment of the health care system, but it’s such an important one,” Dr. Teno mentioned. “If you screw it up, people don’t forget.”