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.

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.

September Sausage Making

“Those that respect the law and love sausage should watch neither being made.” –Mark Twain.

While Mr. Twain certainly did have a gift for turning a clever phrase, we here at the Hospice Action Network believe that our Hospice Advocates should be as informed as possible about how we represent them in Washington. It dawned on Tony and I that it may seem like things are quiet here at the Hospice Action Network offices. I know that many of you saw Don’s recent letter to the Joint Select Committee on Deficit Reduction (the Super Committee), but you may wonder what that means for HAN staff and what exactly we’re up to as Congress returns to DC this fall.

As a grassroots community, we find of ourselves in one of those DE-creasingly rare times of behind-the scenes activism. This means that things aren’t necessarily “happening” on the more public stages of DC. But, it is a good opportunity for me to let you know the types of things that do happen during these periods, which don’t necessarily make it into the media or even our typical Action Alerts. Here is what we have going on this month on your behalf:

  • HAN staff recently met with our Senate hospice champions to map out strategy and positioning options for S. 722 (The HELP Hospice Act), along with fine-tuning some messaging around the ongoing debt negotiations and the challenges facing the hospice community. This is one of a series of Congressional meetings we have scheduled this month (and every month) and part of our constant dialogue with Congress. These meetings may be routine for us, but they are critically important to maintaining the presence of a strong, unified hospice presence on Capitol Hill.
  • Last week, NHPCO HAN CEO Don Schumacher and other HAN senior staff engaged in a friendly and substantive HAN-facilitated meeting with senior leadership at CMS covering the current state of hospice in America and the challenges and opportunities that lie ahead for the community.
  • In an effort to ensure that we are marshalling all of NHPCO’s resources and that all key staff are “smart” on these crazy budget negotiations, HAN staff facilitated an internal staff briefing with a former Staff Director of the Senate Budget Committee.
  • HAN staff also facilitated an informational meeting with White House staff for FHSSA (NHPCO’s philanthropic arm focusing on hospice in Africa), ensuring that the Obama Administration is aware of the hospice community’s commitment to serve those in need well beyond our borders.
  • Additionally, this week, staff from HAN and the NHPCO regulatory team will be meeting with officials at HHS to discuss the essential health benefits package, and why hospice is a natural fit for coverage.
  • Later in the month, HAN is hosting a Congressional briefing on hospice in the nursing home, featuring the latest research by Dr. Joan Teno and the personal perspective of the value of hospice in this setting by a hospice patient family member and a hospice provider.
  • HAN staff continue our outreach to MedPAC commissioners, as well as their professional staff to better set the stage for their ongoing deliberations on hospice issues.
  • Finally, HAN will be represented in a meeting we have set up between Don Schumacher and one of the Super Committee members.

We just wanted to let you know that we have your back, and that things are definitely not so quiet around here. What can you be doing? As always, we encourage you to continue to nurture your existing relationships with elected officials during this time, and when (and, actually, if) the time is right for large scale, activism – you’ll hear from us. All the resources you need are on the HAN Web site, or email us at info@nhpcohan.org .

A Visit from Deb Kelly: Hospice Advocacy from the Provider Perspective

In July of this year, Deb Kelly spent a couple of days with HAN staff, making visits to the Hill and getting to know NHPCO on a different level. This was Deb’s experience, in her own words.

Recently, I had the opportunity to spend some time with NHPCO’s Public Policy staff. The purpose of my visit was to gain a better understanding of public policy and obtain a general overview of the legislative process. It was an awesome experience and I would encourage any member to take some time to do this. This experience gave me a different perspective about my role as a hospice provider and how I might become more involved in advocacy.

Although I could have spent months and not seen everything I needed to, Jon Keyserling and Angie Truesdale were phenomenal in arranging activities so that I could see as much of the process as possible during my short visit. I had the opportunity to sit in on several meetings with key staff for members of the Senate and House. The purpose of these meetings was to gain support for Senate Bill 772- the HELP Hospice Act, and for a companion bill in the House of Representatives. The Help Hospice Bill 772 has 3 provisions in it. First, the bill requires some changes to the Face to Face encounter regulations to make the regulation more operational for providers. Secondly, the bill mandates that hospice programs are surveyed at least every 3 years and lastly it requires a demonstration project before hospice payment reform is implemented. All of these issues are critical to the future viability of our programs.

I was in awe of the approach used by the NHPCO/HAN staff and lobbyists as they met with various staff on “the Hill”. It is very obvious that they are all highly skilled advocates and we are very fortunate to have such an experienced group of individuals working with us. I think that what was most impressive to me is their commitment to hospice. Many of the NHPCO/HAN staff and the lobbyists were drawn to HAN because of prior experiences they have had in their personal lives with hospice.
While it would be easy to let this highly skilled group of advocates work to ensure that hospice is here for future generations, it is unrealistic to think that they can do it alone. These experts should certainly be leading the charge, but we as providers must also become active in ensuring that our legislators understand the importance of the work we do. So, I would encourage you to get involved by contacting your Senators and Representatives when they are back home and encourage them to support the HELP Hospice bills. Invite your Senator or Congressman to visit your program, arrange an in-district meeting or even attend a town hall meeting. Let them know that action is needed now to preserve hospice for the future.

Deborah J. Kelly RN, MSN, CHPN, is Chief Clinical Officer at Clarion Forest VNA, Inc., in Clarion, PA.