How the Hospice CARE Act Could Change Respite Services

The Hospice Care Accountability, Reform, and Enforcement (Hospice CARE) Act, if enacted, would make changes to the ways hospices provide respite care.

Rep. Earl Blumenauer (D-Oregon) is in the process of drafting the bill that would represent the most significant reforms to date for hospice payment and oversight. The legislation is currently in a discussion draft phase, which has been circulated among the nation’s major industry trade associations and their members for feedback.

Blumenauer announced the bill at the Hospice News Elevate conference in Washington D.C. There, the Congress member pledged to work with hospice providers to fine tune the bill’s language.

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“There’s evidence that people who take advantage of hospice care delivered properly, actually have a higher quality of life. Oftentimes, they live longer,” Blumenauer said at Elevate. “This is an opportunity to do something in this Congress that is concrete, specific, that will save money and improve the quality of care for some of our most vulnerable people.”

The bill’s wide-ranging provisions include some items pertaining to respite care. It would, for example, change the current statutory language that limits inpatient respite care to no more than five consecutive days to no more than five days during an election period.

Some stakeholders in the hospice space have spoken out against the potential new limitations on respite care, including the NAHC-NHPCO Alliance. This is the temporary name of the recently combined National Association for Home Care & Hospice (NAHC) and National Hospice and Palliative Care Organization (NHPCO).

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The draft as currently written also would add a transitional inpatient respite care period of an additional 15 days. Patients therefore could receive as many as 20 days of inpatient respite care during the first 90-day election period.

“The provision represents a limitation not previously imposed on hospice patients,” the NAHC-NHPCO Alliance indicated in comments on a discussion draft of the bill. “Although beneficiaries may currently only use five days of respite at a time, they may use these five consecutive day periods multiple times in a benefit period. A beneficiary and their caregivers’ needs rarely line up neatly with benefit periods, and this imposed limitation could create a new burden for some caregivers.”

According to the draft, the establishment of a 15-day transitional inpatient respite period can be used to help eligible patients transition into hospice care sooner from a hospital stay rather than choosing to first go to a skilled nursing facility.

The National Partnership for Healthcare and Hospice Innovation (NPHI) voiced support for this change, though it also called for updated payment rates that would enable providers to sustain these services.

“This will have the benefit of enabling the patient to elect hospice earlier than they would with an intervening [skilled nursing facility] stay and enable the hospice to provide care for a longer period than would otherwise be possible,” NPHI said in a comment letter shared with Hospice News. “The legislation should keep in mind that absent changes to the current inpatient respite payment rate, many providers will be unable to or choose not to deliver this level of care since the patient population is likely to be more acute than the average patient who currently utilizes the respite level of care.”

Further, the bill would create a short-term home respite level of care for when respite care is provided for at least eight hours during a 24-hour period for no more than five days during an election period, effective on or after October 1, 2026.

These care days would would also count toward the hospice’s payment cap. It would also require the U.S. Centers for Medicare & Medicaid Services (CMS) to establish an hourly rate for short-term home respite care starting in fiscal year 2027.

This rate in subsequent years would be updated by the market basket percentage increase reduced by a productivity adjustment, similar to the current system for hospice per diems.

The senior services advocacy group LeadingAge voiced support for the in-home respite provision, with some caveats. LeadingAge asked that hospices be allowed to use contracted staff to provide those services and for assurances that operators would be reimbursed fully in cases where the care occurs during two calendar days but within a 24-hour period. This would avoid payment issues that providers currently encounter when providing continuous home care.

“We also would ask that Congress clarify that any member of the hospice team can provide the in-home respite if that is consistent with the patient’s plan of care,” LeadingAge noted in comments on the draft. “Finally, we ask that assisted living be a site of care for in-home respite. Since assisted living varies in what services are offered, there are people who are residing in assisted living who are still receiving substantial help from family members.”

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