February 27, 2024

How Long Does Hospice Last?

A widespread assumption about hospice care is that it is used during the last few days of a person’s life. While that can be true, how long a person is “in hospice” varies widely.

Former president Jimmy Carter and his wife Rosalynn are examples of that. As of February 2024, President Carter had been receiving hospice for more than a year. His wife Rosalynn received hospice care for 6 months before her death.

Selecting hospice care changes the focus to comfort care (palliative care) for pain relief and symptom management instead of care aimed at curing a patient’s terminal illness.

Hospice care is covered by Medicare, Medicaid and most private insurance plans. To be eligible for Medicare Hospice Benefits – which cover most of the health care costs related to a terminal illness – a person must be diagnosed with an illness which their doctor believes will likely lead to the individual’s death within 6 months.

However, according to the National Hospice and Palliative Care Organization, the average amount of time Medicare recipients are enrolled in hospice is only 92.1 days.

“Sadly, the average Medicare beneficiary who elects hospice receives services for a very short time,” says EveryStep chief medical officer, Dr. Tom Mouser. “The trend tends to be that people wait too long to elect hospice because they're afraid of the perception that it will shorten their time or that they're ‘giving up.’”

The data shows quite the opposite — individuals who elect hospice care often live longer than those who choose not to do so. While widespread perception is that those in hospice are refusing medical care, Mouser says that’s false. “Hospice care is the continuation of aggressive, evidence-based medical care. It's care, however, that's focused on the patient's goals of living better and having better symptom control. It’s focused on having better quality of life rather than extending life with aggressive means that often lead to a higher degree of a burden or even suffering for the patient because of the risks that come with some of those aggressive treatments.

“I often say just because something might help you doesn't mean it will, and just because you can do something doesn't mean you should.”

Mouser says when people don’t have well-controlled symptoms and are not eating or sleeping well, they’re at a higher risk for increased health complications and problems. When hospice care controls the symptoms of a life-limiting disease, Mouser says the patient’s condition often improves.

“It is not uncommon to see somebody stabilized to the point that after 6 months or more, we begin to think maybe they are not as close to end of life as we thought,” says Mouser. In some cases, patients are discharged from hospice care because of stability. “Those of us who work in the industry wish more people understood it might be the hospice care itself that helps a patient's condition stabilize, eventually rendering them ineligible to continue receiving [hospice] care.”

As EveryStep’s chief medical officer, Dr. Mouser must determine if an individual is likely in their last 6 months of life if the disease continues its expected course. If a patient improves to the point where that is not the expectation, the individual can be discharged from hospice care; however, an individual may re-enter hospice care if their condition later declines.

The hospice benefit of Medicare provides coverage for hospice care in specific benefit periods. Initially, a patient can receive hospice care for two 90-day benefit periods. After that, they can continue to receive hospice care for an unlimited number of 60-day benefit periods.

“In essence, someone has nothing to lose and everything to gain if they choose to end aggressive life-sustaining treatments and if their goal is to just live to the best and highest quality for whatever amount of time they have to live,” says Mouser. “Ultimately, the regrets we see are nearly always about wishing they would have elected hospice sooner because they didn't understand how much it would benefit them.”

With home-visiting teams located across the southern half of Iowa, EveryStep Hospice helps those living with a serious illness make the best out of every day. Most hospice care is provided through in-home hospice services; however, when a patient needs around-the-clock hospice care to manage their pain and symptoms, EveryStep Hospice’s Kavanagh House in Des Moines is available. Kavanagh House provides a home-like atmosphere with private bedrooms, living rooms, a family kitchen, spa room, children's play areas and other family amenities. To learn more about EveryStep Hospice, visit https://www.everystep.org/services/hospice.

If you or someone you know is struggling to find the support they need, please contact EveryStep at 515-558-9946. Or complete the commitment-free, confidential “Find Care” form on EveryStep’s website at https://www.everystep.org/find-care. EveryStep staff will follow up with a phone call to answer your questions and provide assistance.

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