Reflections of an Intern

Josie Mace was the NHPCO HAN Policy Intern for the summer of 2013. Below, she looks back at her summer with Hospice Action Network.

Hospice has held a very special place in my heart since I was a senior in high school, when my grandmother was diagnosed with terminal cancer. At first, she chose to receive chemotherapy treatments to reduce the size of her tumors, which she hoped would result in at least a few extra weeks with me, my mother, and my uncle. She moved in with my parents and me when her treatments began. For the next six months, I watched her experience incredibly agonizing side effects from chemo, until she was put in the hospital and decided to cease these treatments so as to spend her final months free of misery. My grandma was placed under hospice care after her release from the hospital and the experience that she had from that day until her death about three months later differed so greatly than the time before it. Her hospice care team was so responsive to her needs, but also to my and my mother’s needs in grieving. I know that my grandmother got to experience the best death possible for her situation.

It has been nearly eight years since her death. In that time, I have moved away from my hometown of Richmond, Virginia to Washington, DC to pursue a Masters of Public Policy degree at American University. As part of my program, I thought it might be a good idea to seek out a summer internship and once I did, I found the Hospice Action Network and the National Hospice and Palliative Care Organization. I was looking for an internship that not only excited me, but that also made me feel like I was making a difference in people’s lives. Though that seems to be the goal for all of the 20-somethings who move to DC, I really wanted something different than just doing office work. I had not heard of either organization before responding to their job posting, but thought that with my personal hospice experience and passion for health policy, they could be the perfect fit for me and I could be a benefit to them.

Little did I know when I came to NHPCO how much I had to learn! Though I have campaign and legislative experience, I did not know how many cuts hospice programs across the country faced before I came here. But after reading the contents and analyses of the Personalize Your Care Act, the HELP Hospice Act, and now the Care Planning Act, I knew this: my hospice story is one similar to that of thousands of people and no one should be denied the ‘good death’ my grandma was able to have thanks to hospice. I have been witness to a number of efforts to keep hospice funded and to further the nationwide conversation on death and advanced care planning. One of those efforts, the HAN Advocacy Intensive, is exactly the reason I was brought on for the summer. Last week, after months of preparations, I saw the event come to fruition and it was truly something special. Over 200 hospice advocates attended and every single one of them was so impassioned about hospice care! On the first day of the Intensive, everyone heard from a panel of lobbyists, a panel of congressional staffers, and Brad Fitch of the Congressional Management Foundation. This got everyone even more riled up and ready to tell their stories on the Hill. Last Tuesday, they did just that.

After spending three months here and hearing some of the stories of NHPCO’s advocates, I have experienced a few things that I know I would not have through most other internships. I have learned how great hospice is, outside of my own personal experience. I had no idea hospice costs Medicare significantly less than a hospital stay. Perhaps the most exciting thing I experienced was getting to sit in on a Hill meeting with our advocates from Virginia and having the honor of meeting Senator Mark Warner. For a policy and politics nerd (from Virginia, nonetheless) like myself, it was a dream come true!

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Josie in front of Senator Warner’s office

Much of the research I have done in graduate school has been about the policy implications of the quality of mental health care in the United States. Unexpectedly, hospice has also taught me how mental health care may be improved from a policy perspective. One of the things that make hospice so great is the focus on the individual’s needs and not on a general one-size-fits-all plan to relieve pain and manage symptoms. Many publicly funded mental health programs and hospitals do not use individualized plans. Hospice also counsels the family, sometimes uses alternative treatments like music therapy, and uses quality-reporting measures to ensure the best possible care. Again, many mental health programs do not do anything like this. More often than not, providers rely on medications that can often have debilitating side effects, provide little to no counseling to families that are faced with caring for someone with a severe mental illness, and have very little groundwork for measuring quality of care provided. If mental health policy took a few notes from the hospice book, the quality of mental and behavioral health care in the U.S. might be significantly better.

I have extended my scope of knowledge not only of policies affecting hospice, but also of the policy areas I was interested in before coming to NHPCO. I have to say, though, one of the most important things I will look back on when reflecting on my time here is the kindness and warm-heartedness of those who work in hospice, both inside the NHPCO offices and in NHPCO member organizations. This has been one of the most informative and dare I say fun places to work. It’s sad for me to have to say goodbye, but I know I have developed a new passion for end-of-life care that I would not otherwise have.

Connect with Members of Congress through Your Veteran Programs!

The Memorial Day and Fourth of July congressional recesses are quickly approaching, and Members of Congress and their staff have service members, veterans, and their families on their minds. Congressional schedulers are looking for opportunities to connect Members of Congress with veterans in their districts and states during these times. Many hospices already have a unique program at the ready that serves veterans and can be utilized to increase the visibility and knowledge of hospice to their elected officials.

The We Honor Veterans (WHV) program, supported by NHPCO and the Department of Veterans Affairs, has seen great success in fostering relationships with hospices across the country seeking to meet the unique needs of veterans in hospice care. One of the special hallmarks of the program are pinning ceremonies devoted to publicly acknowledging the military service and sacrifices made by the veteran and his/her family.

Shortly after taking office representing the 29th district of New York, Congressman Tom Reed was visited by a group of advocates from Southern Tier Hospice and Palliative Care (now CareFirst) at HAN’s Hill Day in 2011. After a goodvisit, the savvy Advocates invited Congressman Reed to a WHV ceremony at their program. Congressman Reed accepted the invitation, and during his visit, spent time speaking with the veterans and shared his own personal experiences with hospice care. The staff at Southern Tier notified the Hospice Action Network of Congressman Reed’s interest in hospice and began to cultivate a relationship with the Congressman.

Since then, Congressman Reed has become one of the leading champions of hospice care in the House of Representatives. He was the lead sponsor of the Hospice Evaluation and Legitimate Payment (HELP Hospice) Act later that year, and will again be the lead sponsor of the bill when it is reintroduced later this month.

Representative Tom Reed (NY-29), Mary Ann Starbuck (CEO at Southern Tier), Kathy McMahon (President/CEO of the Hospice and Palliative Care Association of New York State), Jon Keyserling (NHPCO/HAN).
Representative Tom Reed (NY-29), Mary Ann Starbuck (CEO at Southern Tier), Kathy McMahon (President/CEO of the Hospice and Palliative Care Association of New York State), Jon Keyserling (NHPCO/HAN).

One of the most important ways Hospice Advocates can influence hospice policy at the federal level is to become involved at the local level. Site visits, such as Congressman Reed’s visit to Southern Tier are a great way to educate Members of Congress about hospice care, see what hospice care really looks like, and to begin building relationships with your Members of Congress. Inviting your Members of Congress to your program is an excellent way to begin, or continue to build, a relationship that benefits your hospice and the hospice community as a whole. And by inviting your Members of Congress to an event for veterans, you not only honor the veterans you serve, but raise awareness for hospice care so it is available for today’s veterans and those to come. Your Senator or Representative may become the next hospice champion in Congress!

HAN has a variety of resources on our website from inviting a Member of Congress to your program to how to write a press release on your successful event! If you have any questions on how to plan a site visit or how to contact a district office, contact us at info@nhpcohan.org. And don’t forget to let us know about your successful event!

A look inside a successful site visit from your Member of Congress

On September 4th, Arkansas Hospice hosted Congressman Tim Griffin from Arkansas’ 2nd District at their main office in North Little Rock.

It wasn’t the first time Arkansas Hospice staff had met with the Congressman’s office.  Representatives of Arkansas Hospice and Circle of Life Hospice met with the Congressman on Capitol Hill Day in March and other representatives from Arkansas Hospice met with his staff during the Hospice Action Network’s Advocacy Intensive in June.  In both meetings, they invited Rep. Griffin to visit their program when he was back in the district to learn more about hospice first-hand. It’s an important reminder that Hospice Advocacy isn’t a one-time event- it takes persistence and multiple contacts to develop good relationships with your Members of Congress.

Arkansas Hospice CEO Judy Wooten and Rep. Griffin
Speak about the FSHHA Program

Those invitations paid off when Congressman Griffin’s office called them to arrange a visit during the recent recess.  On September 4, Rep. Griffin met with Arkansas Hospice’s CEO, Judy Wooten, as well as other members of their leadership team. They had also identified staff and board members with connections to Rep. Griffin, which helped the Congressman feel personally invested in the work of the organization. They took Rep. Griffin on a brief tour of their offices, and along the way explained in detail the hospice philosophy of care. In the photo above, Judy shows Congressman Griffin how Arkansas Hospice extends its mission beyond Arkansas to provide friendship and support to Seke Rural Hospice in Zimbabwe through FHSSA’s Partnership Program . Because Rep. Griffin has a military background and serves on the House Armed Services Committee, they also told him about what they have done to achieve Level 3 of the We Honor Veterans program and their plans to achieve Level 4.  Rep. Griffin responded very positively to this information, and came away with a deeper understanding of what goes into providing quality end-of-life care both at home and around the world.

Judy and her team not only prepared general background documents on hospice for the Congressman, but they also took the time to develop several program-specific materials with information on what it takes  to provide care in a rural state like Arkansas. These specifics help Members of Congress contextualize what exactly is needed to provide hospice – like the 1.7 million patient miles driven by Arkansas Hospice patient care staff in 2011!

During Rep. Griffin’s time at Arkansas Hospice, he and key hospice staff had a long discussion about the role hospice plays in the health care delivery system-Health Care Reform is something the Congressman clearly feels strongly about. Judy and the rest of the staff were able to talk about the cost-savings of hospice care, citing the 2007 Duke Study, as well as their concerns about the potential impact of current and proposed cuts to hospice reimbursement on quality and access, and how the HELP Hospice Act would create a pilot program to determine the impact of any proposed changes to the hospice reimbursement system before they are implemented . It was a thoughtful and informative conversation, and at the end of it Rep. Griffin said he would review the HELP Hospice Act and consider becoming a cosponsor.

As always, participating in Hospice Advocacy requires a multi-pronged approach.
Two visits from Arkansas Hospice employees to Rep. Griffin’s office in a six-month period laid the groundwork for the site visit.  The site visit laid the groundwork for him to consider cosponsoring the HELP Act.  And in fact, on September 12th, Congressman Griffin became the 61st Member of the House of Representatives to cosponsor the HELP Act. It was about as successful a visit as one could hope for!

This may seem like a lot of work, but as we always mention, we’re here to help. HAN has many resources to help you prepare and carry out a site visit, and we’re always a phone call or email away. If you’d like to work on developing relationships with your Members of Congress, drop us a line at info@nhpcohan.org– we’ll get right back to you!

NHPCO’s Advocacy Intensive: Taking Action toward Quality Care

Molly Seltzer is an intern in NHPCO’s Office of Health Policy this summer. She is a member of Clemson University’s Class of 2013. Below, she describes her thoughts after participating in HAN’s recent Advocacy Intensive, which brought bedside hospice professionals and caregivers to Capitol Hill to tell their hospice “Story” to Members of Congress.

My first experience at a Hospice Action Network event consisted of not only pure excitement, but also education and newfound awareness.  There was no better place for my first NHPCO conference than Capitol Hill itself.

Day one of NHPCO’s Advocacy Intensive could not have gone smoother.  Starting my morning at the registration desk, I was able to greet the people who make hospice care possible. While many NHPCO conference attendees are those in leadership positions, the Advocacy Intensive brought a mix of bedside caregivers and other members of the IDT from all over the country to our nation’s capital to speak about their personal experiences on the front line of hospice and palliative care.

Working at NHPCO’s office, in addition to personal encounters with hospice providers, gave me a basic understanding of the world of hospice.  However, it was not until my experience at the Advocacy Intensive that I was able to fully comprehend the importance of not only hospice and palliative care itself, but tenaciously advocating the significance of hospice benefits to our healthcare system.  The Monday afternoon speakers stressed the importance of maintaining contact with key decision makers in Congress, as well as how moving personal stories can be when compared with straight facts and statistics.

Many people are unaware of the variety of patient demographics hospice and palliative care accommodates and mistake the array of services hospices provide – attaching a stigma to the word “hospice” and assuming it is but last resort care for the elderly.  In fact, hospice provides both emotional and physical support for patients as well as their families, easing them through the disease process and facilitating comfort during difficult times. Additionally, hospice provides care to patients of all ages – this fact in particular can be quite a wakeup call.  Many people are unable to imagine terminally ill children, but hospice providers often care for the young patients facing a life-limiting condition. 

Day two of the Advocacy Intensive proved particularly educational, as I attended several meetings with Hospice Advocates and their Senators and Congressmen.  After a morning pep rally filled with heartening cheers (when I say Hospice…you say Action!) and encouraging participants to tell their story, it was time to hit “the Hill.”  Each attendee was given a unique and personalized schedule of meetings with select representatives to match their advocacy needs. 

Being a Political Science student, I found these meetings to be particularly intriguing.  It is such a difficult time for the health care sector (with possible cuts to Medicare on the horizon), and as a result it is of utmost importance to describe the amazing steps being taken in hospice care to our policymakers – especially considering many do not know what hospice is!

One particular conference that stood out in my mind took place between a House Representative and three constituents of her state; a hospice nurse, a chaplain, and a social worker.  After recollecting personal stories of experiences with hospice patients in addition to immediate family members, the three asked that action be taken regarding the HELP Hospice Act, outlining the importance of its changes will have on providing quality care.

NHPCO’s Advocacy Intensive allowed me to see how dynamic and tremendously important hospice care is to our country.  I encourage all to attend future Advocacy events, and to take action and stand up for hospice care.  Hospice needs us to advocate all the wonderful things being done every day!

Hospice Champion Congressman Mike Thompson (CA-1) with Hospice Advocates Kim Mantch, Robin Stallman, and Heather Isaacs-Royce.

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!