Hospice Regulations May Be Adversely Affecting Dementia Patients

Regulators have been zeroing in on longer lengths of stay in hospice, but patients with dementia may be caught in the crossfire.

Two policy changes have corresponded with reductions in hospice enrollment among dementia patients, a new study in the Journal of the American Medical Association has found. These include the audit system created by Improving Medicare Post-Acute Care Transformation (IMPACT) Act of 2014, and the two-tiered reimbursement for routine home care that reduced payment amounts after 60 days.

Designed to prevent misuse of the Medicare Hospice Benefit, these efforts may have had unintended consequences.


“We found evidence to suggest that recent Medicare policy changes targeting patients with long stays in hospice care were associated with lasting reductions in the share of patients receiving hospice care admitted with an [Alzheimer disease and related dementias (ADRD)] code compared with expectations based on pre-implementation trends,” the study authors wrote.

Researchers from George Washington University and the University of Chicago examined data from more than 11 million unique hospice care episodes that occurred between 2008 and 2019.

Due to rising utilization, Medicare hospice expenditures increase by about $1 billion annually. This has spurred CMS to step up enforcement to ensure potential malfeasance doesn’t drive up costs.


In recent years, the agency has come to see patient stays longer than 180 days as red flags that could lead to an audit. But the longest lengths of stay tend to be associated with particular diagnoses.

The 2019 average for dementia patients was 126 days, compared to 92.6 days for all hospice enrollees, according to the National Hospice and Palliative Care Organization (NHPCO). For comparison, cancer patients that year were in hospice for an average of 45 days.

“Given that patients with ADRD have the highest likelihood of hospice stays that are longer than 180 days and often have compromised capacity for choice and self-advocacy, patients with ADRD may have been uniquely affected by these policies,” the researchers observed.

Meanwhile, hospices have been caring for dementia patients in larger numbers and can likely expect a more substantial influx in coming years. The number of dementia patients is expected to rise by 40%, or 139 million people globally, by 2050, according to data from the World Health Organization (WHO).

For some stakeholders, the rising rates of dementia among hospice patients signal a need to reassess some aspects of the Medicare Hospice Benefit. Established in 1982, the program was designed primarily with cancer patients in mind.

“We need to reform the hospice benefit itself. It used to be that 80% to 90% of the people who got hospice care had a cancer diagnosis, and the benefit was established to sort of meet that diagnosis,” NHPCO President and CEO Edo Banach said at the Hospice News Palliative Care Conference in Chicago. “Now, more than 50% of folks have dementia. It’s those dementia patients that sometimes drive the inside-the-beltway beard-stroking over long lengths of stay and live discharge rates.”

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