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Improving Access to #EOL Care: The Rural Access to Hospice Act

Imagine getting a call from one of your patients late one night. It is snowing, and it is late, but it is clear that your patient is in need of a visit. You grab your bag and head out the door, only to realize that not only is it snowing, but the snow is drifting to over six feet high, and visibility is about zero. And the roads haven’t been cleared. And your patient is an hour outside of town, on a clear day.

Patients in rural areas routinely face barriers to care, some of them geographical, infrastructural, or meteorological. Luckily, those barriers are often overcome by dedicated hospice teams who, like in the real-life example I described above, will go as far as to use their neighbor’s tractor to reach their patient in need.

What they shouldn’t face, however, are administrative barriers to care. Unfortunately, patients who are currently served by physicians at Rural Health Clinics (RHCs) and Federally Qualified Health Centers (FQHCs) are unfairly discriminated against when it comes to the freedom to choose their hospice attending physician. Due to a quirk in the law, that doesn’t affect any other discipline, physicians at RHCs and FQHCs are prohibited from receiving payment for their services as the hospice attending physician. That means a patient, whose only physician for miles around might be at an RHC, is prevented from keeping that physician when they transition to hospice.

This problem in the law also has an effect on patients of Federally Qualified Health Centers, which serve mainly minority and low-income communities in traditionally underserved areas. Many of us in the hospice community recognize the disparities in hospice care, as highlighted by the 2016 NHPCO analysis of the CMS Hospice Limited Data Set. This analysis found that while 86.8% of hospice patients identified as Caucasian, only 8.2% of patients identified as African American, and only 2.0% identified as Hispanic. Why should these patients, who already face systemic and cultural barriers to hospice care, be further alienated by a quirk in the law that deprives them of their freedom of choice?

To get specific, RHCs and FQHCs are paid a fixed, all-inclusive payment for all services provided to Medicare beneficiaries. Hospice attending physician services, however, are not included in the list of approved Medicare services that can be accounted for in that all-inclusive payment. Additionally, most hospice attending physician services are paid for through Medicare Part B. Most RHCs and FQHCs, because of their all-inclusive payment structure, do not have Medicare Part B billing numbers. Therefore, even if a physician at an RHC or FQHC wants to stay with their patient as they transition to hospice, they will not be able to bill Part B separately for that time.

We think that is unfair, given that nearly all other hospice patients are permitted to have the hospice attending physician of their choice. We believe that the special relationship between a patient and their physician should not be compromised because of a mistake in legislative drafting. Therefore, we have been working with Congresswoman Lynn Jenkins (R-KS), Congressman Ron Kind (D-WI), Senator Shelley Moore Capito (R-WV), and Senator Jeanne Shaheen (D-NH) to pass the Rural Access to Hospice Act.

We are hopeful that, by hearing from enough of their constituents, Congress will recognize the inequality of this issue, and act quickly to change the underlying language. This is a simple fix, and the bill has bi-partisan and bi-cameral support, so it is not controversial. If you agree with us that this is an important fix to help ensure access to quality care for all Americans, regardless of their zip code, then please visit our Rural Action Center and tell your Members of Congress to support the Rural Access to Hospice Act.

We’d also appreciate hearing your stories and experiences with hospice access, and encourage you to visit the website to participate in our crowd-sourced story initiative. We are trying to capture as many unique stories about hospice and palliative care as possible, to reflect the amazingly diverse nature of our community.

About the Author: Lauren Drew is the Manager of Advocacy and State Relations at the National Hospice and Palliative Care Organization and the Hospice Action Network. She is passionate about educating and empowering advocates to participate in legislative and regulatory advocacy.

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