Hospice Action Week 2023: Advocates Unite on Capitol Hill

On Wednesday, June 7 hospice and palliative care advocates from across the nation made a difference and presented a united voice in Washington, DC.

As a part of the annual Hospice Action Hill Day, over 70 NHPCO and HAN advocates gathered to make legislative visits on Capitol Hill in support of key policy priorities impacting hospices of all shapes and sizes. This was the first completely in-person Hospice Action Hill Day since 2020. Participants were excited to come together and have face-to-face congressional meetings for the first time in years.

Participants included members of the board of directors for both organizations, state leaders, MyHospice Ambassadors, and grassroots advocates. There were representatives from every piece of the hospice and palliative care system, from CEOs to clinicians and nurses, from administrators to volunteers. NHPCO and HAN staff also joined groups of advocates for meetings, including five NHPCO summer interns. Advocates’ previous experience on the Hill ranged from decades of visits to the Capitol to this event being their first-ever opportunity to meet with legislators.

Over 130 Congressional offices in the House and Senate took time to speak with advocates representing providers, patients, and families from more than half the total states in the US.

Advocates spoke with legislative offices about five key policy issues: community-based palliative care, program integrity, payment policy, the future of the hospice workforce, and the results of the recent NORC study on annual hospice cost savings to Medicare. Through a series of trainings and resources, advocates were introduced to recent developments on these issues and key asks for legislators.

One key ask was for legislators to support the Expanding Access to Palliative Cart Act (S. 1845), which was introduced on June 7 during Hospice Action Hill Day. This bill would authorize the Centers for Medicare & Medicaid Services (CMS) to test a demonstration model of providing palliative care to Medicare beneficiaries outside of the hospice benefit and in community settings. On the workforce front, legislative offices were also asked to support the Palliative Care and Hospice Education and Training Act (PCHETA), which is expected to be reintroduced before the end of June.

On program integrity asks, advocates informed legislative offices of NHPCO and partners’ 34 recommendations to CMS, and that a bipartisan sign-on letter to CMS on the issue from Representatives Earl Blumenauer (OR) and Beth Van Duyne (TX) would soon be circulating.

Advocates have shared that legislative offices were engaged with policy issues and asks, expressing enthusiasm for the latest NORC research, interest in exploring paths forward for workforce and program integrity issues, and in expanding access to palliative care. Offices also reportedly expressed interest in being involved in the We Honor Vets program.

At the pre-Hill Day training on June 6, Hill staffer Sarah Gilbert of Representative Neal Dunn’s office (R-FL) stopped by for a conversation about what advocates could expect when meeting with a Congressional office. 

The training also included recognition for leaders and advocates who made a special difference in the last year for hospice and palliative care.

The 2022 Hospice Angel Awards for members of Congress were shared. Advocates meeting with some offices the following day were able to personally deliver these awards. Honorees who met with advocates during the Hospice Action Hill Day included Senator Shelley Capito (R-WV) and Congressman Joe Morelle (D-NY).

Winners of the 2022 MyHospice Ambassador Awards were also formally announced at the pre-Hill Day event. MyHospice Ambassadors is an advocacy program for those who are particularly committed to advancing hospice and palliative care through their demonstrated passion, dedication, and leadership. These award winners stood out through their efforts in the previous year:

• Rookie of the Year: Angela LaBarca, Business Development Specialist with Caring Circle Hospice, Michigan.
• Impactful Voice: Sandy Kuhlman, Executive Director of Hospice Services of Northwest Kansas, Inc., Kansas.
• Ambassador of the Year: Demetress Harrell, CEO of Hospice in the Pines, Texas.

The event also briefly recognized Mackenzie Daniek, co-director of Providence Hospice in Seattle and first-time Hospice Action Hill Day attendee. Daniek co-wrote an impactful op-ed on hospice care in the Seattle Times this past April, and organizers wanted to recognize the piece as an ideal example of advocates effectively raising the profile of hospice and palliative care issues.

Overall, the Hospice Action Hill Day and the training that preceded it have already proven to be a seminal moment in NHPCO and HAN advocacy for 2023. With the start of a new Congress and the resolution of outstanding issues like the debt ceiling, it was vital for hospice and palliative care advocates to come together and raise a collective voice for the cause. After years of being separate-but-together, an in-person advocacy event provided opportunities for renewed energy among advocates from across the country.

Learn more about how YOU can be part of changing hospice care policy for the better by signing up with the Hospice Action Network today!