It didn't come as a complete surprise when a Pennsylvania hospice told Phyllis Fine's family last year that she was no longer eligible to receive care.
Mrs. Fine, 84, enrolled in hospice in June 2012. After supposedly routine heart valve surgery, she suffered a major stroke, leaving her unable to walk, speak much or feed herself.
For months, hospice staffers cared for her in her nursing home. "They were awesome people," said her daughter, Audrey Marsh. "They bathed and changed her and kept her company. They fed her."
The hospice had admitted Mrs. Fine for 90 days, then another 90. After that, Medicare rules required re-certification every 60 days, meaning that a physician must attest she is likely to die within six months if her disease runs its normal course. In May, when Mrs. Fine was no longer losing weight or showing other signs of decline, the hospice apologetically said she no longer qualified.
Ms. Marsh understands the rationale: "She's not getting any better, but she's not wasting away."
Carol Willette, on the other hand, is seething. Her family had debated for months about calling hospice. Her mother Earlene Willette, 90, a nursing home resident in Mill Valley, Calif., had been ailing for several years — falling, battling infections, eventually losing mobility.
"Mom was trying to tell people she didn't want anyone prolonging her life," Carol said. "I was talking about hospice, but my siblings were in an uproar about it."
It took a diagnosis of amyotrophic lateral sclerosis, or ALS, to make everyone understand that Earlene Willette's condition was terminal and meant increasing disability. In mid-November, a local hospice enrolled her, and the usual team — aides, nurses, a social worker, a chaplain — began visiting. "They all said they were there for her and for us," Carol told me.
Less than a month later, the hospice discharged Mrs. Willette, saying she was not losing ground. "I told them how cruel it was to do this," Carol said.
Mrs. Willette can return to hospice care as her condition worsens (so can Mrs. Fine), but Carol worries that her mother will feel on probation, at risk of losing care she will come to depend on.
Hospices have always had the ability — and under Medicare rules, the obligation — to discharge some patients. The Medicare Payment Advisory Commission, relying on 2009 and 2010 data, has reported that 20 percent of hospice patients are discharged alive each year; the National Hospice and Palliative Care Organization says its surveys show that a third of discharges are initiated by patients themselves, and two-thirds by hospices.
But discharges are climbing. Gilchrist Hospice, the largest in Maryland, now discharges of about 20 percent of patients, and "we're on the low side," said its clinical director, Regina Bodnar. Indeed, a Washington Post investigation, analyzing a million records of California hospice patients, found that the proportion discharged alive rose 50 percent between 2002 and 2012.
What's happening here? Hospices have lamented for years thatdying patients wait too long to call, enrolling at the eleventh hour when they could have benefited months earlier. Now, we're hearing more about patients doing as hospice believers (including me) have urged, calling earlier in the course of a terminal disease — and then, in a substantial minority of cases, getting bounced.
Jon Keyserling, senior vice president for policy at the national hospice organization, points to several pressures.
First, the Centers for Medicare & Medicaid Services are peering over every hospice administrator's shoulder. "CMS, through its contractors, is looking much more carefully at longer-stay patients," Mr. Keyserling said. With hospices under increasing scrutiny, "they need to be even more careful about the patients they admit and the patients they keep."
The claims reviewers pay particular attention to whether a patient's disease is progressing. They want to see evidence: Does the patient need more oxygen? Have her medications changed? Is he falling?
In the past, "you never did weights on hospice patients," Ms. Bodnar said. Now, Gilchrist weighs patients; if it can't, it measures the circumferences of their arms. "We're looking for objective data" to justify recertifying patients, she said.
But hospice patients sometimes hit plateaus or temporarily improve; in fact, studies have shown that they live slightly longer than those with the same diseases but without the additional care. At that point, to comply with Medicare rules, "you have to seriously consider whether they're eligible to continue," Ms. Bodnar said. Patients can appeal discharges, but they don't usually win.
When auditors question hospice decisions, causing a flurry of expensive and time-consuming paperwork, they can hold up Medicare reimbursement for months or years — if the hospices are eventually found to be entitled to payment.
And if they're not? Medicare audits forced the 35-year-old nonprofit San Diego Hospice, California's largest, to close earlier this year; denied expected payments, the hospice owed millions of dollars and declared bankruptcy. "A sobering moment," said Ms. Bodnar.
At the same time, all hospices face shrinking budgets. The federal sequester reduced payments by 2 percent. With other cuts, some a vestige of the Bush administration and some mandated by the Affordable Care Act, Medicare reimbursements to hospices will be about 4 percent lower this year, Mr. Keyserling said.
One can sympathize with hospice organizations caught in this squeeze. Determining which patients will likely die within six months has always been difficult, especially with conditions like heart disease or dementia, whose trajectories can be unpredictable. To avoid being penalized if they guess wrong, hospices are taking no chances.
At least, that's true of hospices operating according to the regulations and honoring the movement's historic mission. The Post attributed much of the jump in discharges to the way for-profit hospices have come to dominate the field, enrolling ineligible seniors for long stays to bolster corporate bottom lines, then dumping them to evade Medicare sanctions. (The Times has also reported on growing hospice costs.) Whistleblowers and the Justice Department have sued several large national chains to stop these practices.
But I worry about families who have agonized about the decision and finally called for help, then feel betrayed when hospice withdraws, even though their relatives can regain hospice care when they decline further. They shouldn't get caught in this crossfire.
Was this really the intent of the 1983 hospice Medicare benefit – to have dying older people moved off and on the rolls, to have families receive crucial support and then lose it, depending on whether someone's weight has stabilized for a few weeks?
"I get the need to right the ship and make sure only eligible patients receive benefits," Ms. Bodnar said. "My fear is that we're at risk of discharging patients who aren't dying fast enough."