Fun fact: My apartment is decorated for Halloween year-round. I have more decorations that are specific to the holiday, but I don’t always put them up. Sometimes it feels kind of unnecessary, plus I am running out of space to put more skeletons and such.
Moving on, today we are going to talk about everyone’s favorite subject — the government. Specifically, I want to think about ways hospices can engage with lawmakers to effect positive change.
I have written about this on Hospice News a couple of times, in regard to fraud and the pandemic.
While agencies such as the U.S. Centers for Medicare & Medicaid Services (CMS) regularly engage with hospice providers, many legislators and governors may have less direct exposure to hospice and palliative care, despite their influence over associated policies.
These are people who make decisions that affect your organizations, your employees and your patients.
Even in more stable policy environments, hospice and palliative care organizations face persistent challenges stemming from limited public and policymaker awareness of their services, their benefits to patients and families, and their broader value to payers and the health care system.
These challenges are compounded by the stigma surrounding the word “hospice,” which can contribute to misconceptions about the care and support these organizations provide.
Hospices must communicate their needs to policymakers in order for them to be addressed. The hospice community comparatively is not necessarily a political heavyweight, but you do have an influence. People need to hear your stories.
I wanted to share (with permission) this email I received from Logan Hoover, a hospice policy expert, government relations professional and former legislative director to Rep. Tom Reed (R-N.Y.), who left office in 2022:
“Hospice was built by advocates. Its future depends on them, too.
Eight years ago, my mom died at home, surrounded by family and her dogs, under the care of an outstanding hospice team. It was the first time I truly saw what hospice is. What they gave us was both tangible and intangible. Some of it could be measured. Much of it never will show up in a star rating or fit neatly into a payment formula.
My first experience with hospice was nearly two decades prior, though I didn’t know it at the time. As a child, I watched my grandparents receive hospice care in hospitals and nursing homes. I didn’t know it was called ‘hospice,’ or that it was any different from the care they’d had all their lives. What I remember most was a nurse telling me that if I had anything remaining to say, now was the time. I had the privilege of being there at the end of my nana’s life, but my brothers, who were out taking care of our dogs and getting dinner for the rest of us, weren’t as fortunate. When I called my brothers to give them the news and hurry back, I suddenly couldn’t find the words. My nana’s hospice nurse gracefully stepped in to do it for me.
Years later, as legislative director for Rep. Tom Reed (R-N.Y.), I saw hospice from the other side: statutes, regulations, payment data and reports from the CMS Office of Inspector General and the Government Accountability Office. We enacted the Helping Our Senior Population in Comfort Environments (HOSPICE) Act and passed the Palliative Care and Hospice Education and Training Act in the House twice with overwhelming bipartisan support.
Along the way, I met a handful of hospice leaders and lobbyists, but only one or two frontline staff. Learning from these experts was a rarity, and an experience many of my peers on Capitol Hill might not have been as lucky to have. This education and engagement taught me something important: Most of Washington sees hospice through spreadsheets and audit findings. It rarely hears from the people who deliver the care or the families who have experienced it.
That gap matters, because hospice itself began with ordinary people pushing Washington. More than four decades ago, clinicians, families and volunteers persuaded Congress that every American deserved the chance to die with dignity. The result was the Medicare Hospice Benefit: a patient-centered, holistic form of care. Different from the rest of the health care system that too often fails people. For 40 years, hospice has been synonymous with hope.
Today, we hear a different story: Hospice is ‘at a crossroads’ and has lost its way. Yes, fraud and bad actors exist, and some patients aren’t getting the care they need. Those problems deserve serious action, and there are high-quality providers who want to fix these problems.
So what will the story be 10 years from now? Will the next chapter of hospice be written only through formulas, trend lines, and bureaucratic intuition, or by the physicians, nurses, aides, social workers, chaplains, volunteers and families who live this work and feel its impact every day?
These problems can be solved, but the solutions must come from the hospice community, and policymakers have to hear them. That means working together as a community, meeting with your member of Congress and their staff, inviting them to visits and ride-alongs, engaging positively on social media, following up, and consistently educating them on what quality hospice really looks like.
Last month, hundreds of advocates from three national organizations convened in Washington, including the National Alliance for Care at Home, the Hospice and Palliative Nurses Association, and the National Partnership for Healthcare and Hospice Innovation. This work matters, but lasting change requires steady engagement. The trade associations are doing their best to have continuous engagement, so should everyone else. If we really want change, we all have to make more time for this.
It’s easy to say Washington is broken. It’s easy to believe advocacy changes nothing. It’s easy to think someone else will do it for you. I’m grateful the advocates of the 1970s and 1980s didn’t take the easy route.
Hospice needs front-line advocates, not simply to defend the status quo, but to build the future we want for ourselves and the people we love.”
What are some ways that hospices can tell their story to decision makers in government? Is your organization doing this kind of work? What steps have you taken? Please drop a comment.
Since the overwhelming majority of hospices are operated to generate financial returns that satisfy investors, I wonder which voices will dominate and what they'll say?