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

"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.

"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.