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!
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.