State’s hospice providers lean on Legislature in a quest to boost utilization

Hospice and palliative care providers are lobbying state lawmakers to pass a bevy of bills that they say would promote awareness of and access to their underused services.

New York has the lowest hospice utilization rate of any U.S. state save Alaska, according to a 2020 data analysis by the National Hospice and Palliative Care Organization, a nonprofit that represents the industry. In 2018, just 30% of the state’s Medicare recipients were enrolled in hospice services at their time of death. The nationwide average was just under 51%.

One bill advancing through the Legislature, A.8880A/S.8205A, would establish a statewide advanced care planning campaign to promote public awareness of hospice and palliative care services.

Jeanne Chirico, president, and CEO of the Hospice and Palliative Care Association of New York State, an Albany-based not-for-profit organization, said it is critical for New Yorkers to know their options for end-of-life care. Hospice programs offer physical, spiritual, and emotional services for the patient and their family and caregivers. Providers can deliver services at home or in nursing homes or hospitals.

“Ultimately, we’re trying to avoid people dying anywhere but where they want to be,” she said. “Most people don’t recognize that they can stay at home until their dying breath.”

Although Medicare covers hospice services without cost-sharing, fewer than 50,000 New Yorkers used the benefit in 2020, according to the most recent data from the U.S. Centers for Medicare & Medicaid Services. Those who did, received 53 days of care, on average. Providers were reimbursed about $10,867 per patient.

Chirico said another measure, A8006/S8206.A, which is awaiting a Senate vote after passing the Assembly last week, could boost utilization by enabling residents of assisted living programs to receive hospice services. Thanks to complex governmental regulations, residents have to disenroll from their program—sacrificing access to Medicaid home care services—to be able to receive hospice care.

The Hospice and Palliative Care Association estimates authorizing hospice for these residents would save Medicaid $13 million a year by reducing hospitalizations and nursing home stays.

Even if more patients start enrolling in hospice programs, stakeholders said they still face burdensome regulations and meager reimbursement rates that make it difficult to stay afloat.

Sandra Cassese, president, and chief operating officer of Hospice of Orange and Sullivan, which serves about 1,500 unique patients annually, said Medicare reimbursement rates barely cover her organization’s costs, forcing them to rely on philanthropy to stay out of the red. She said the organization based in Newburgh is on track to lose $1 million this year if it cannot make up the difference with philanthropic support.

Chirico said the establishment of a dedicated hospice office within the Department of Health could help providers by facilitating greater communication with the state and ensuring regulators have expertise specific to hospice and palliative care. A bill that would create such an office, A.8881A/S.8206A, passed the Assembly earlier this week and now awaits action by the Senate rules committee.

Chirico said the Covid-19 pandemic was proof of the need for a dedicated office because hospice providers were often an afterthought. The Health Department’s rollout of the vaccines to health care workers left out hospice providers, forcing them to wait weeks more to get vaccinated. When regulators set rules on nursing home visitation, they neglected to specify that hospice workers do not count as visitors, which resulted in some getting turned away at the door, Chirico said.

Cassese said the goal of the current advocacy campaign is to draw more attention to services that have long gone under the radar.

“New York just really dropped the ball on this for a very long time,” she said. “Our legislators never fully supported or promoted access to these services.”

There are 41 hospice programs across the state. —Maya Kaufman