My husband was kicked out of hospice for dying too slowly. Here’s what I learned about navigating hospice care.

“No more operations,” he said.

It was mid-January 2026, and my then-73-year-old husband, Mike Salmon, had just started bouncing back from a three-month ordeal of three operations related to aortic aneurysms, sepsis, and a terrifying descent into delirium tied to a stay in the intensive care unit. Now, after another potentially fatal aortic aneurysm and ambulance ride, the doctors clustered around his hospital bed said the fix involved two more major, risky operations.

If Mike did nothing, the aneurysm or sepsis would likely kill him, they predicted. How soon? “Weeks,” one doctor said. “I’m astonished I’ve made it this far,” Mike said. So, abruptly, we were shunted onto hospice care — the dead-end spur of the American medical system.

Hospice agencies manage care for patients expected to die within six months. They don’t provide curative procedures or drugs. Instead, they aim to help families make terminally ill patients comfortable, typically at home, as an illness reaches its inevitable conclusion. Families provide most of the day-to-day care, and 85% have suggested they are very satisfied with their hospice’s services, which include supplies of drugs and medical equipment, and visits from nurses, therapists, and aides.

More than 1.9 million Americans were enrolled in hospice in the last fiscal year. Over 80% of those patients stayed on hospice until they died — within four weeks, on average. But each year, about 6% of patients are kicked out because a hospice doctor decides they have stabilized or improved enough that they are no longer likely to die in the next six months.

In May, Mike joined that select group. His experience in and out of the hospice system revealed surprising lessons about how families can manage care. And getting removed from hospice revealed a little-known process that can represent a welcome respite for families like ours — but can be devastating for patients with serious chronic illnesses.

Here’s what we learned in our four months on and off hospice.

Check before you choose

“Choose one.” A hospital nurse handed me a list of local hospice agencies. The sooner we signed up, the sooner Mike could go home. Stunned by the suddenness of Mike’s health emergency, I just pointed to the name at the top of the alphabetical list, assuming they were pretty much the same.

Big mistake. Medicare sets basic standards for the hospice agencies it reimburses, but some agencies are understaffed or poorly run. Amy Tucci, president of the Hospice Foundation of America, noted that some agencies provide extra therapy, aide support, and other services.

The problems with the organization I had chosen started immediately. Staffers were often late. They entered inaccurate medical information on Mike’s paperwork and didn’t make corrections when alerted. Medicare allows you to quit or change agencies, so I asked neighbors for recommendations. That was a good start, but Kristina Newport, chief medical officer of the American Academy of Hospice and Palliative Medicine, said I should also have checked the quality ratings on Medicare’s Care Compare site and the National Hospice Locator. Those sites would have alerted me to our first agency’s low ratings. Ideally, Newport said, patients or caregivers should call their area’s top-rated agencies to find those that provide the services you need, such as staff members who speak the patient’s native language, provide spiritual care that aligns with the patient’s beliefs, or are stationed nearby to arrive quickly in an emergency.

The local, long-established nonprofit that neighbors recommended handled the transfer seamlessly. Its staff was punctual, accurate, and kind. The chef’s kiss after we switched: A nurse from the original company we chose called to say she hoped I hadn’t initiated the change because of “concerns about our care of your mother.”

Some people get better on hospice

Research hasn’t yet fully explored why, but some people actually see their health improve under hospice care. Studies have found, for example, that hospice patients with congestive heart failure or lung cancer live about a month longer, on average, than similar patients in the standard medical system.

Terry Bertholet, who teaches courses on elder law and hospice care at the University of Connecticut, said many patients benefit from hospice’s careful pain management, and from leaving hospitals, where they risk infection and overtreatment. Returning home allowed Mike to get up and walk without waiting hours for an overworked nurse to unplug a bunch of monitors, and to enjoy real food. Also, the hospice nurse gave him medicine to help him sleep through the night. He soon started regaining weight and strength.

You can flunk out of hospice for not dying quickly enough

Medicare and many other insurers pay for hospice services only for patients whom physicians certify are likely to die within six months of the most recent assessment (not the date of enrollment), so hospice staff regularly reassess patients. Medicare audits agencies to check for fraud and demands repayment of funds provided for care of patients its auditors deem have not proved to be terminal. Hospices, good and bad, worry about their bottom lines and Medicare’s fraud audits. They may feel pressure to discharge patients who threaten the organization’s finances, even though such discharges can remove important care. “Medicare is worried about fraud and abuse, not about people not getting enough care,” Bertholet said.

Especially for diagnoses with uncertain prognoses — such as dementia — if a patient improves or even stabilizes, hospice physicians might discharge the patient because they can no longer certify a likelihood of death within six months.

For some lucky reason, Mike’s aneurysm and sepsis held off. By early May, his wounds had healed, and his strength had improved enough that he returned to gardening, playing bridge, and whipping up his signature lattice-topped blueberry-cinnamon pies. While we appreciated the convenience of the nurse’s visits and the drug and medical supply delivery, we realized Mike no longer needed care, so we agreed with our agency’s decision to discharge him.

For patients suffering from more debilitating diseases, discharges can be a “nightmare,” said Krista Harrison, a hospice researcher at the University of California-San Francisco. Discharges often happen quickly. Medicare requires giving patients a minimum of two days’ notice. 

When Harrison’s father-in-law, suffering from a neurodegenerative disease similar to Parkinson’s, was discharged because his health seemed to plateau, the family scrambled to replace and pay for hospice-provided equipment such as a hospital bed and oxygen supply, and they had to quickly find and hire aides to replace the hospice aides. “Just getting his prescriptions reestablished and filled was a big deal,” she said. Her father-in-law died six weeks after discharge, she said.

Do your homework to ensure appropriate care

Arming yourself with information about your risks and rights can help you get the hospice care you need when you need it. 

• Know your diagnosis. Discharges are unlikely for most cancer patients. But patients with dementia, heart disease, and Parkinson’s often plateau. So they are disproportionately likely to be discharged, UCSF’s Harrison said.
• Choose a highly rated hospice. Research shows for-profit hospice agencies are more likely to discharge patients than nonprofits. Medicare’s Care Compare site will alert you to which is which. 
• Keep your own records. Caregivers who can document, say, a patient’s growing need for eating assistance can help hospice staff approve continuing care, or build a stronger appeal, UCSF’s Harrison said.
• Keep your family doctor more informed. Doctors “don’t have the financial interest” the hospice faces and could help you dispute a discharge, Bertholet advised.
• Appeal quickly. Hospice agencies must provide information on appealing a discharge. But you must file the appeal (online or by phone) by noon on the day before the termination date, which may mean you have only a few hours if you’ve been given the minimum two days’ notice, said Wey-Wey Kwok, a senior attorney for the Center for Medicare Advocacy.
• Reenroll. Patients can try reenrolling in hospice at any time. Another hospice agency may take you immediately. Or you can wait until the patient’s health declines and try reenrolling with your original hospice agency, the Hospice Foundation’s Tucci advised. 

That last option is our plan. For now, Mike and I are enjoying these unexpected bonus days. But whenever fate catches up with him, Mike said, he’s comforted to know he’ll get good care from the hospice’s staff. “They’ll try to improve the quality of what time I have left,” he said.

KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism.

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