Hospice in America by the Numbers

(Edited by Jim Van Buskirk — Jim Van Buskirk has co-hosted death cafés for many years and currently volunteers as a regional coordinator with Final Exit Network (FEN), counseling callers on end-of-life options, and reviewing books and films for FEN’s quarterly magazine. Most recently he edited the anthology, There At The End: Voices from Final Exit Network – A Celebration of 20 Years. This article is used with permission via Creative Commons. It was taken directly from “Hospice in America by the Numbers” published by Caring Hospice Institute.)

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A recent report on U.S. hospice care offers some unexpected statistics. For most American families navigating a terminal illness today, hospice is no longer the exception, it is the default. 

The Medicare hospice benefit covers up to six months of care, with extensions possible when a physician recertifies the prognosis. Few families come close to using that much time. Research consistently finds the same three reasons: 

• • • the attending physician does not raise the possibility of hospice early enough
    • the family resists what feels like “giving up” 
    • the hospital discharge planner only mentions hospice in the last 48 hours of an inpatient stay

Even with rising enrollment, late referral remains the biggest gap between what the benefit can do and what families actually receive.

In 2023, the most recent year with complete data from the National Hospice and Palliative Care Organization (NHPCO), about 1.72 million Medicare beneficiaries received hospice care, and 51.7% of all Medicare decedents (deceased persons) used the benefit before death. That share has more than doubled since 2000, when fewer than a quarter of Medicare deaths involved hospice.

Medicare spent roughly $26 billion on hospice in 2023, and there are now more than 6,800 Medicare-certified hospice providers nationwide — up from about 2,300 in 2000.

The single statistic that gets cited most often in the field, by clinicians and policy analysts alike, is the median length of stay: 17 days. This means that about 1 in 4 patients enroll in hospice during their final week of life and that half are dead within 17 days.

Since the 1990s the dominant hospice diagnosis has been cancer. Over the past two decades Alzheimer’s disease and other forms of dementia have grown to become the second largest category of hospice patients (currently at 25.4% ).

• • • Cancer: about 30% of patients
    • Alzheimer’s and other dementias: over 25%
    • Cardiovascular disease: about 16%
    • Respiratory illness (COPD, etc.): about 10%
    • Stroke, kidney disease, ALS, and other non-cancer: about 24%

The average age at hospice admission is about 80 years, and the largest single age bracket is 85 and older. The Medicare benefit’s prognosis-based eligibility (life expectancy of six months or less if the disease runs its normal course) shapes both who qualifies and how late they arrive.

Roughly 70% of Americans say they want to die at home. The Medicare hospice benefit is one of the few policy levers that makes that possible at scale. Most of care days happen wherever the patient calls home: a private residence, an assisted-living community, or a nursing home. Patients move between settings as their condition changes; general inpatient (GIP) care in a hospital or hospice inpatient unit is reserved for symptom crises that cannot be managed elsewhere.

• • • Routine home care (the patient’s residence): about 52% of all patient-days
    • Nursing facility: about 28%
    • Assisted living: about 14%
    • Inpatient (GIP, respite, or general): about 6%

The financial trends in hospice care may raise concerns for patients. In 1992, around 5% of Medicare-certified hospices were for-profit. By 2024, that share was approximately 73%. The Medicare Payment Advisory Commission (MedPAC) reports that hospice margins are unusually high for healthcare: about 16% on a Medicare-aggregate basis in 2022, several times the margin most other post-acute providers operate on. That margin has driven a wave of private-equity acquisitions. The ten largest hospice chains now treat roughly a third of all hospice patients in the U.S. Research consistently finds that for-profit hospices spend less per patient-day on nursing and physician visits and enroll a higher share of long-stay dementia patients, where the daily Medicare payment is most profitable. 

How families experience hospice is measured directly through the CMS CAHPS Hospice Survey — a standardized federal questionnaire mailed to a sample of family caregivers two to twelve months after the patient’s death.

The aggregate numbers are remarkably high for U.S. healthcare:

• • • About 81% of caregivers rate hospice 9 or 10 out of 10
    • About 84% say they would definitely recommend the hospice to friends and family
    • Satisfaction with emotional and spiritual support is the single highest-rated component — roughly 89% say the team provided the right amount
    • The component caregivers rate lowest is help with training to care for the patient at home (about 76% say they always got the training they needed)

The pattern is consistent: families overwhelmingly say the hospice team handled the emotional and clinical work well. Where hospice falls short is in equipping family caregivers to physically deliver the day-to-day care.

Hospice utilization varies sharply by race, geography, and Medicaid status. Among Medicare decedents:

• • • White patients: about 53% use hospice
    • Black patients: about 38%
    • Hispanic patients: about 43%
    • Asian and Pacific Islander patients: about 38%

The reasons are well-studied: longer-running historical distrust of the medical system, language and cultural framing of end-of-life decisions, and lower physician referral rates in communities of color. Rural patients face a different problem — rural counties have roughly 40% fewer hospice providers per capita than urban ones, and average travel time per home visit is much longer, which limits how many patients each team can carry. This is one of the few areas where the data is unambiguous about an inequity that matters at the end of life.

The Medicare hospice benefit includes thirteen months of bereavement support for the patient’s family after death — counseling, support groups, anniversary contacts, sometimes a memorial. It is a Medicare Condition of Participation; hospices that fail to offer it can lose their certification. Yet fewer than half of eligible families use any of it. The reasons include:

• • • the family isn’t aware it’s included
    • the offerings are buried in a sympathy mailing
    • the surviving spouse simply doesn’t feel up to a phone call

 For agencies that take the bereavement program seriously, it’s often the component that families remember most.

Hospice fraud enforcement is intensifying, especially in California, Nevada, Arizona, and Texas, after a wave of new-provider applications in 2019–2022 that turned out to include hundreds of paper hospices. CMS has imposed moratoriums on new Medicare hospice certification in those four states. Also, per-beneficiary payment reform is on the MedPAC docket. The current routine-home-care rate is widely seen as overpaying long-stay dementia care relative to the cost of providing it.

While statistics are useful as orientation, the decision in front of a family is always local: 

• • • which providers serve our city
    • what their patient surveys say
    • who answers the phone at 2 a.m. when symptoms escalate

County directories pull live data from the CMS Provider Data Catalog, adds Medicare CAHPS family-caregiver ratings, layers in Google review counts for additional signal, and surfaces the providers Medicare reports as permanently closed so one isn’t calling dead phone numbers. To locate an office near you:

• • • browse by county or by city 
    • compare up to three providers side by side
    • visit them
    • choose one that is compatible with your end-of-life values
    • check the “Top Rated” section for the providers families have rated 4 stars or better on the federal survey

 

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Final Exit Network (FEN) is a network of dedicated professionals and caring, trained volunteers who support mentally competent adults as they navigate their end-of-life journey. Established in 2004, FEN seeks to educate qualified individuals in practical, peaceful ways to end their lives, offer a compassionate bedside presence and defend a person’s right to choose. For more information, go to www.finalexitnetwork.org.

Payments and donations are tax deductible to the full extent allowed by law. Final Exit Network is a 501(c)3 nonprofit organization.

 

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