Reflections of a new Hospice Advocate

As a part of our successful Hill Day 2012, we had many first time attendees. One of the most engaged and excited was Demetress Harrell, Senior Executive Director of Hospice in the Pines in Lufkin, TX. We asked her to talk a little about her first time coming to the Hill.

As I capture the reflections of my time on Capitol Hill I visualize the importance of the Hospice Action Network.

The labor of hospice care is extremely rewarding and presents an exceptional opportunity to enhance the quality of end of life care. However, it is necessary to advocate for changes that will strengthen this remarkable avenue of service. This year, I had the incredible opportunity to be a participant in the Hospice Action Network’s Capitol Hill Day activities. Before my arrival, I laid the groundwork for a successful visit by I submitted a letter to each of the Members of Congress that represent our counties and made a personal call to their local & Washington, D.C., offices notifying them of our upcoming Hill Day. The HAN staff facilitated a unique event. I made several calls to the NHPCO offices to speak with the Coordinators to assure I addressed all of the important elements to make this a successful occasion. The HAN staff (Tony Kudner, Angie Truesdale, & Karen Davis) did a superior job preparing the participants for this amazing day.


NHPCO CEO Don Schumacher and Hospice in the Pines Sr. Executive Director Demetress Harrell

I recognize the importance of promoting hospice among our legislative members and the necessary goals in presenting our requested action. I had visited our Texas State Capitol three weeks prior to our U.S. Capitol visit and discussed the regulatory issues confronting hospice services in Congress; This also helped to prepare me for my Capitol Hill experience. I enjoyed my time in D.C. and was honored by the warm reception from the Hill registration desk to the bus travel to the Capitol. During my time at the U.S. Capitol, I was appointed as the initial spokesperson for our delegation. We met with several Senate and House offices, even sharing pictures with Representative Louie Gohmert and the Chiefs of staff in four of the six offices. We visited the offices of Senator Kay Bailey Hutchison, Senator John Cornyn, Rep. Michael Burgess, Rep. Michael McCaul and Rep. Louie Gohmert. The most important element that we discussed during our visits was the HELP Hospice Act, and each Congressional Office attentively voiced questions and comments on the legislation. While waiting for the little train to travel from the House to the Senate, I spotted Senator John McCain as he shared a hello and kind wave to our members.

Members of the TX Delegation taking to the Hill

Today we must make an impact among those making the decisions for the future of hospice. From the face-to-face visit requirement to the increased frequency of hospice surveys, we need your voice. Consider the chance to raise your voice at our next Advocacy Intensive or Hill Day event….it will make a difference. Help keep hospice on the front page of our Nation’s healthcare agenda!

Hospice Advocacy: A Personal Approach

On a cool, overcast day in late March, 300 Hospice Advocates stormed Capitol Hill to spread the message of hospice and to request support of the HELP Hospice Act (S. 722/H.R. 3506). After spending the past few months managing the Hill Day registration process, it was invigorating to see and hear the excitement from Hill Day attendees after their meetings came to a close. Susan Fuglie, a Hospice Advocate and first-time Hill Day participant from North Dakota, came into the respite room energized after attending her Congressional meetings. On the bus back to the Gaylord Convention Center, the Hawaii delegation proudly showed off pictures they had taken with their Senators, both of whom have signed-on to the HELP Hospice Act. And the Arkansas delegation excitedly told HAN staff that Congressman Mike Ross would co-sponsor the legislation. In fact, Congressman Ross’s office navigated the proper channels that day to become an official co-sponsor, something rarely seen on Capitol Hill. Additionally, Hospice Advocates who couldn’t attend Hill Day pitched in by calling their Members of Congress and asked them to support of the HELP Hospice Act. Since Hill Day, 5 Representatives, including Congressman Ross, have officially co-sponsored the legislation, and even more have made verbal agreements to become a co-sponsor.

Although it is only one part of HAN’s broader strategy to pass this important legislation, bringing Hospice Advocates to the Hill is one of the most important things we feel we do here in D.C. Last week, HAN had banners on Congressional Quarterly’s (CQ) “Health Beat” daily emails, advertisements in a special healthcare issue of CQ, as well as an ad in Capitol Hill newspaper Roll Call. In March, we placed ads in a special issue of USA Today Magazine. HAN staff works with a team of lobbyists, who all have personal hospice experience, throughout the year to reach out to Members of Congress. But Hospice Advocates—whether CEOs, clinicians, or social workers—all bring a personal face and a name to hospice. You bring stories of real patients and families, and how hospice was able to benefit them at the end of life. For example, Hospice Advocates are able to explain how the face-to-face encounter requirement directly affects their hospices and delivery of care to hospice patients. As a result, you add personal touch to a regulatory requirement that may make a staffer or Member of Congress look at the issue in a different light.

For me, Hill Day was my first opportunity to meet our wonderful Hospice Advocates. Instead of names and membership ID numbers, I could put faces to the names of Michele Fedderly, Carol Clark, and Kathy McMahon, for example. These leaders in advocacy in their states and in NHPCO are clearly respected among their peers, leading their state delegations during strategy sessions and on the Hill. They are also thoughtful and incredibly kind and each one promptly asked to see pictures of Tony’s baby girl (Tony happily obliged!). I came to realize that those personal touches, and those of other Advocates, are simply an extension of what sets hospice workers apart as advocates. You sincerely care about your patients and individuals that enter your lives, if only for a brief time. To be effective hospice workers, you must be able to connect with those around you with ease. This comes through in your interactions with Members of Congress and their staffers.

So while advertising may bring attention to hospice on Capitol Hill, we need the personal experiences and stories you bring to your Members of Congress to really get the message—and meaning—of hospice across. The advertisements and lobbyist meetings set the stage for you to tip the scales in the direction of hospice. To support the efforts of your fellow Hospice Advocates, participate in Virtual Hill Day through April 6 by clicking here. Consider coming to Washington, D.C., to tell your story to Congress as part of the Advocacy Intensive on June 18-19. Call your Members of Congress, or write a letter to the editor, to tell them why they should support the HELP Hospice Act. Invite your Members of Congress to tour your facility and show them what hospice is. The staff of the Hospice Action Network is here to help you with all of this. But no matter what, the key to successful Hospice Advocacy is simply telling your story.

Pictured above: Congressman Mike Ross with the Arkansas Delegation on Hill Day.

The Top 1%

A lot of the talk in this country recently has focused around the 99%, in the context of the haves and have-nots. I was treated to a different understanding of who could be described as the 1% this week during the Hospice Action Network’s ongoing Hill Day webinar series by presenter Brad Fitch. Brad is the President and CEO of the Congressional Management Foundation, which focuses on best practices in citizen advocacy, something of great importance to my work here at the Hospice Action Network.

In his presentation “Communicating with Congress: How to Turn 10-Minute Meeting with a Legislator into a Life-Long Relationship,” Brad talked about the practices that turned someone into the top 1% of citizen advocates- he spent about an hour discussing those techniques and tips that help someone really connect with their Member of Congress. The thing that always surprises me is how simple it is to really develop an effective and mutually beneficial relationship with a Member of Congress- it’s very easy to make it into the top 1% of citizen advocates.

This week, I talked with our good friends and great Hospice Advocates at Hospice of the Western Reserve in Ohio. They have a great program, which boasts a robust We Honor Veterans program, as well as one of the few pediatric palliative care programs in the country. They also take the steps necessary to really work with their Ohio Congressional delegation. Last fall, Chief Executive Officer Bill Finn and Government Relations Manager, Justin Reiter flew in for the day to visit with their Senators and Representatives. And just last week, they hosted a site visit with Representative Steve LaTourette from the 14th district. Rep. LaTourette has a history of working with Hospice of the Western Reserve–he co-sponsored hospice-friendly legislation in 2008, and his office has been instrumental in securing several flags that have been flown above the U.S. Capitol for veterans at HWR.

Rep. LaTourette visiting with a Hospice patient and her family at Hospice of the Western Reserve

Hospice of the Western Reserve has plans to visit Rep. LaTourette again at Hill Day this year, and while several representatives will be here at the Capitol in person, they told me that they’ll also leave instructions at home for other folks to participate in Virtual Hill Day to underscore the same messages. It is this focus on developing the relationship with Rep. LaTourette on a variety of levels that helps when Hospice of the Western Reserve asks him to co-sponsor the HELP Hospice Act, as they did during his site visit, and as they plan to again on Hill Day.

All of which brings me back to the 1%. Hospice of the Western Reserve is working their advocacy on many fronts: they are having site visits with Members of Congress in their districts, they are participating in Virtual Advocacy, and they’re also taking the time to fly in to Washington to visit with their Representatives. When a program takes these steps, they make that leap into the top 1% of citizen advocates. It takes a multifaceted approach to develop a relationship with a Member of Congress. By working in several different ways with Rep. LaTourette, Hospice of the Western Reserve is more involved in the process than 99% of the country, and has a much higher chance of getting Rep. LaTourette’s attention and support.

I’d be remiss if I didn’t mention that I’m here to help you with this process. As HAN’s Program Coordinator for Grassroots Advocacy, I help folks connect on many levels with their Members of Congress. Need help with a site visit? I have a toolkit for you. Want to schedule a meeting here in D.C.? I’m a phone call away. Want to participate in Virtual Hill Day? Shoot me an email; I’ll get you set up! I’d love to help you move from the 99% into the top 1% of citizen advocates.

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.

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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.

A few thoughts on face-to-face.

If you work or volunteer in hospice, the biggest change you’ve probably heard about this year was the implementation of the ‘face to face’ encounter. In simple terms, it was a provision within the Health Care Reform law that mandated that a hospice doctor or Nurse Practitioner physically visit a patient after six month of that patient entering hospice to make sure that the patient was still appropriate for hospice.

Seems simple, no? It’s a well intentioned law that has the well-being of the patient at heart. And while the implementation of that law has been fraught with challenges to hospices and patients alike, I still have to say that I like the objective at its’ core- One of the best ways to make sure the patient is getting the care they need is to go and see them. Humans are social creatures, and we learn more about one another by sitting down face to face than I think we sometimes let on.

Last week I traveled to NHPCO’s Clinical Team Conference in San Diego (don’t get too mad at me- it rained most of the time…). I was there to talk to conference attendees about the Hospice Action Network, to record video testimonials, and to forge lasting connections with members of the hospice community. Now, I’m not a networker by nature. It doesn’t come easily to me to introduce myself to total strangers and strike up conversations about the intricacies of federal Medicare policy (to be honest, it would worry me a little if it did come naturally). But here’s the thing- CTC is mainly a conference for those great folks at the bedside. It’s an educational conference geared towards the clinical team. The people at CTC are exactly the kind of folks who can walk right up to you and strike up that kind of conversation, and in fact when they’re working with patients this is part of what they do- they explain how the Medicare Hospice Benefit works. It couldn’t have been easier for me to talk with folks at the conference, to hear what they’re struggling with, what would be helpful for them, and what policies they feel would be beneficial. The connections I made were very valuable- since I’ve been back from the conference I’ve already connected with folks from Michigan, Oklahoma and Nebraska about making strong, lasting investments in Hospice Advocacy in their communities. I can honestly say that I don’t feel that the Hospice Action Network could have counted on their support without actually having met representatives from those programs and made that contact.

Personal connections matter. I remarked in an email today to a colleague that I could write 100 emails, but they wouldn’t have the impact of one good five-minute conversation in person. Of course, the same is true at all levels- especially with your Members of Congress. Here at the Hospice Action Network we do a good bit of work with the Congressional Management Foundation. One of their recent polls of Congressional staff found that if a Member of Congress’s mind wasn’t made up on an issue, an in-person visit with a constituent was well over 90% likely to influence their decision.

It feels like Hill Day 2011 was yesterday, but here at the HAN offices, we’re already gearing up for Hill Day 2012. While writing an email or sending a fax is helpful in influencing what your Members of Congress think about hospice, it’s nothing compared to you telling them in person. Your hospice story is important here in Washington, and we here at HAN want to help you share it. If you have questions about how to become more involved in Hospice Advocacy or Hill Day 2012, drop us a line- we’re always here to help you help hospice.

The Hospice Action Network staff can be reached at info@nhpcohan.org.