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.