Hospice Care in the United States (2024)

In 1983, Congress passed legislation that established the Medicare Hospice Benefit, providing people enrolled in Medicare (Medicare beneficiaries) with access to palliative end-of-life care. The program was designed for people with terminal illness diagnoses—in particular, people with a life expectancy of six months or less. In the early years of hospice, most beneficiaries opting for hospice were of terminal cancer diagnoses; however, the proportion of hospice patients with non-cancer diagnoses has grown. This marks a larger trend toward palliative care for end-of-life care, focusing more on pain management than aggressive curative services. Hospice has grown significantly in the last few decades. In 1992, less than 9% of Medicare beneficiaries died in hospice. By 2000, the number had more than doubled, rising to 22%. By 2015, 46% of Medicare beneficiaries died in hospice. While the pandemic caused a hiccup in this trend, the figure floats near 50% today: a massive uptick in hospice usage in the last 40 years.

The implications for the growth of hospice enrollment are numerous. One consideration is spending. Due to hospice’s growth, a quarter of all Medicare spending now goes toward hospice care. This, however, is simply a product of its growth in usage as opposed to hospice as an expensive service. Perhaps somewhat counter intuitively, studies have found that earlier enrollment in hospice tends to reduce spending per Medicare-beneficiary, particularly when patient stays are longer than 10 days. Hospice reduces beneficiaries’ long, expensive (and frequent) hospitalizations, prioritizing comfort and symptom management in patients’ end-of-life.

Hospice’s cost-effectiveness does not come at the expense of patient and family satisfaction. Surveys of families of hospice patients often reveal a common sentiment: many wish they had chosen to move their family member into a hospice center sooner. Survey data indicate a similar sentiment. From national surveys conducted from April 2022 to May 2024, 84% of respondents said they would definitely recommend hospice, 11% said they would probably recommend hospice, and just 5% said they would probably not or definitely not recommend hospice. Additionally, 90% of respondents said that the hospice team provided the right amount of emotional and spiritual support. Families are overwhelmingly satisfied with the palliative care their family member received.

Given that hospice is cost effective, growing, and generally quite well liked among families of hospice-enrolled patients, what is the problem? Put simply, patients are moved into hospice too late. National Association for Home Care & Hospice President William Dombi notes, “Hospice stays of less than 15 days don’t give enough time for patients and families to benefit fully from the person-centered care that hospice provides. Yet, 50 percent of hospice patients receive 17 days or less of hospice care.” Hospice provides an opportunity for Medicare to save money (in a time where they are running out of cash) and improve patient outcomes; however, half of hospice patients are unable to reap the full benefits of this program.

This project intends to investigate how hospices outcomes differ across the U.S., evaluating states on a variety of hospice performances metrics and survey data. By doing this, I will speak about relevant variables to hospice success, understanding which states perform well in hospice and which states could improve. Finally, I hope to make broader conclusions about hospice in the United States.

Part 1: Cost Considerations, Enrollment, and Medicare

Given that hospice constitutes such a large proportion of Medicare costs, understanding how per-beneficiary spending differs in different states is key to this discussion. The national average of per-beneficiary hospice spending is $17,830. However, the plot below demonstrates the vast disparity between in the highest- and lowest- spending states.

This graph should naturally motivate the question: why are there only four states whose average per-beneficiary spending exceeds the national average?

The four states that exceed the national average per-beneficiary spending are (from left to right) Texas, Arizona, Nevada and California. These states have a combined Medicare enrollment of 12,484,212, accounting for almost a quarter of all medicare beneficiaries. This can be compared starkly to the medicare population of the four lowest per-beneficiary spending states—Kentucky, North Dakota, South Dakota, Wyoming—of just 1,292,554. Texas and California large hospice populations and high spending increase the national average per-beneficiary spending.

While I used medicare enrollment as a crude measurement of hospice population above, an important point must be made—the percentage of medicare beneficiaries who die in hospice is vastly different across U.S. States. See the graph below that compares states’ medicare enrollment and the percent of beneficiaries who enroll in hospice.

Hovering over any given state shows its per-beneficiary spending, medicare population, and percent of beneficiaries who died in hospice. New York, despite having the fourth largest medicare population in the country (3,367,359), has only 24.7% of medicare beneficiaries enrolling and dying in hospice. This is is a drastic difference from a smaller state like Utah, with a medicare population of just 382,040 and 60.7% of this cohort dying in hospice. The plot also includes a gradient for per-beneficiary spending, with California continuing to show itself as a major spending outlier among U.S. States.

This plot introduces major questions related to differing hospice enrollment across the country. Why is California paying so much per-beneficiary? Does paying more lead to better health outcomes? Why are there such disparities in hospice enrollment rates in different states? Do states with higher hospice enrollment have higher satisfaction with hospice? To begin to answer these questions, it is necessary to analyze some of the metrics used to evaluate hospice success.

Part 2: Burdensome Transitions, Live Discharges, and The Hospice Care Index Overall Score

The census offers many metrics by which hospice centers can be assessed. The Centers for Medicare and Medicaid Services has developed a metric called the Hospice Care Index, which evaluates hospice providers on a scale from 0 to 10 using ten indicators of quality and compliance. While each component captures a different aspect of care, this composite score offers a look into hospice performance across the country. The ten metrics are as follows:

These metrics relate to many key questions in hospice care—how are patients being discharged, what is the quality of patients’ care while in hospice, and, of course, the ($25.8) billion dollar question, how much do patients cost. To see how U.S. States perform in these ten metrics, along with the Hospice Care Index, interact with the shiny app below.

As noted earlier, hospice is cost effective and most beneficial when patients have longer length of stays. This i

Miscellaneous:

what’s so difficult about moving people into hospice earlier? acceptance of end of ones life. difficult and tumultuous time in individual’s life.

Over time, the mix of beneficiaries electing hospice shifted significantly. The majority of beneficiaries electing the hospice benefit in its early years had terminal cancer diagnoses. In recent years, the proportion of users with non-cancer diagnoses (i.e., failure to thrive, congestive heart failure, Alzheimer’s, dementia, debility etc.) has grown steadily. These non-cancer diagnoses have been associated with increasingly longer periods of hospice care.

https://aspe.hhs.gov/reports/medicares-hospice-benefit-revising-payment-system-better-reflect-visit-intensity-0#:~:text=The%20Medicare%20hospice%20benefit%20was,2014%20(MedPAC%2C%202015).

Hospice is associated with lower Medicare end-of-life expenditures when hospice lengths of stay are longer than 10 days. In other words, earlier enrollment in hospice reduces Medicare spending even further. https://www.nhpco.org/new-research-shows-hospice-care-reduces-medicare-costs/

Hospice stays of six months or more result in savings for Medicare. For those who spent at least six months in hospice in the last year of their lives, spending was on average 11 percent lower than the adjusted spending of beneficiaries who did not use hospice.
https://www.nhpco.org/new-research-shows-hospice-care-reduces-medicare-costs/

“One important finding of this research is that generally as hospice lengths of stay increased, so did Medicare savings. One of the main points of feedback we hear from families of hospice patients is ‘We only wish we had chosen hospice earlier.’ Hospice stays of less than 15 days don’t give enough time for patients and families to benefit fully from the person-centered care that hospice provides. Yet, 50 percent of hospice patients receive 17 days or less of hospice care,” added NAHC President, William A. Dombi. “Policymakers, health systems, and healthcare payers reading this groundbreaking research should see an opportunity to support patient interests and family wellbeing, while also driving savings for Medicare, by ensuring timely patient access to hospice care.” https://www.nhpco.org/new-research-shows-hospice-care-reduces-medicare-costs/

https://data.cms.gov/provider-data/dataset/7cv8-v37d - national survey level data https://www.cms.gov/data-research/statistics-trends-and-reports/medicare-advantagepart-d-contract-and-enrollment-data/monthly-enrollment-state/monthly-enrollment-state-2024-08 - medicare enrollment data