Lessons from Becoming a Hospice Advocate

Karen Davis joined the Hospice Action Network team as Coordinator for Health Policy and Advocacy in late-November 2011. In this role, Karen organizes much of the social media content, works with the NHPCO Public Policy Committee, and performs policy research and anaylsis, including producing materials for use in advocacy efforts. Currently, she is immersed in preparations for Hill Day 2012 and the launch of the HAN Advocacy Intensive.


The Medicare Hospice Benefit. Hospice in the nursing home. MedPAC. Ethical marketing practices. Boy, did I have a lot to learn when I first came to the Hospice Action Network in November 2011! I previously worked on children’s health issues, so my first, and on-going, project has been to understand the intricacies of Medicare, margin analysis, and payment reform, among many other tricky topics. But as I reflect on my first few months as a Hospice Advocate, there are the other more important, lessons I’ve learned.

Hospice touches nearly everyone’s life. I honestly didn’t know much about hospice beyond the basics when I started and didn’t think I had any personal ties to hospice. This quickly changed when I started telling friends about my new position. One friend’s father had moved in with his parents to take care of them for almost a year before he passed away last June. When I mentioned my upcoming interview for this position, my friend quickly said, “Oh, Pop-Pop had hospice care for a couple weeks before he died.” This was the first I heard of hospice working with his family. I spoke with his father and he was incredibly thankful for the hospice care Pop-Pop was provided, as well as the support the entire family received. But this is not an isolated account; stories about hospice started coming out of the woodwork. Several friends had a grandparent, aunt, or family friend receive hospice care, and in every account, hospice could not have been more highly praised.

Lobbyists don’t fit the stereotype. My first week at NHPCO, the HAN team went to downtown Washington, D.C., to meet with our team of lobbyists. This took me off-guard. Previous organizations I worked for only had staff doubling as lobbyists, no one from “K Street.” Now here I was with a half dozen professional lobbyists discussing market basket adjustments and working on ways to connect grassroots leaders with their Members of Congress. Over the coming weeks, I found that not one of them fits the seedy, slick oil salesman stereotype some lobbyists have. The HAN lobbyists are highly intelligent, hard-working, passionate individuals that genuinely care about hospice and passing bipartisan legislation, and not just because it’s their job. And almost all of them have very personal hospice experiences! These characteristics, along with their collective years of experience as Congressional staffers, give them the Hill know-how and ability to advocate for hospice in language that Hill staffers and Members of Congress respond to. These skills make them invaluable members of the HAN team.

HAN is enterprising. The HAN team is consistently evaluating their work and looking for the next best way to empower Hospice Advocates and ensure that hospice has a strong voice on Capitol Hill. Take this year’s Advocacy Intensive, for example. Given the challenges facing hospice in an election year, HAN is investing in a second opportunity for Hospice Advocates to have of Congressional meetings in Washington, D.C. (the Advocacy Intensive is June 18-19, and it’s free!). The staff is also always looking for new ways to make Hospice Advocacy more efficient and effective while utilizing and reaching as many individuals as possible. It is common for us to have conversations on the best ways to utilize our Facebook page and developing virtual opportunities for Hospice Advocates who cannot make the trip to Washington, D.C., this month to be involved in Hill Day, among many other avenues for advocacy.

Hospice Advocates are powerful. In the short time I’ve been part of HAN, I’ve already witnessed the power of the Hospice Advocate. I’ve seen Members of Congress become co-sponsors of the HELP Act (H.R. 3506) on the strength of hundreds of Hospice Advocates from their district responding to a HAN Action Alert. I’ve also viewed many of the video testimonials that passionate Hospice Advocates have volunteered to film. I’ve worked with the HAN staff to package these stories into short videos on YouTube. And when I say “package,” it doesn’t look like the proverbial sausage factory. The HAN staff possesses a true sensitivity to maintaining the integrity of each and every person’s story; any editing is only to enhance, not manipulate, the stories providers, patients, and family members tell. And these videos don’t just sit on YouTube. They are used in Congressional meetings to convey the story of Hospice to staffers and Members of Congress. Every story is powerful. And every voice, whether in person at Hill Day, via video testimonial, or through an email, in support of hospice is a powerful thing. And the voice of every Hospice Advocate is essential to promoting hospice on Capitol Hill.

Hospice Advocates, I am proud to join your ranks. I look forward to meeting many of you at Hill Day and MLC in the coming weeks and working with you in the future. Over the next few months, I will be working with the team to develop a comprehensive strategy to bring hospice policy insights and updates from “inside the beltway” to all of you through this blog and HAN’s other social media outlets, in addition to developing tools for you to use in your advocacy efforts. I’m here to work with you and the HAN team to make the most out of Hospice Advocacy.