By Michelle Santizo, RN
As a hematology and oncology nurse, I’ve seen countless patients in treatment and recovery, and I’ve seen some lose their fight against cancer. In June 2018, I had the privilege to represent ONS as the sole nurse selected to advocate for palliative care with one of ONS’s coalition partners, the Patient Quality of Life Coalition (PQLC), where I was able to share my perspective and the many aspects of my role as a nurse with congressional staff. As the sole practitioner in the five congressional meetings, I provided insight about how nurses interact with patients, particularly during cancer treatment.
At the PQLC’s annual lobby day in Washington, DC, I was invited to join the team to educate policymakers and congressional staff about the importance of palliative care education for both patients and providers. With nearly 100 volunteers from across the country, we gathered to champion the Palliative Care and Hospice Education and Training Act (PCHETA) to legislators. PCHETA aims to fund training and education for necessary palliative and hospice care services, along with supporting new research efforts in the field. With better hospice and palliative care, we can improve our patients’ quality of life throughout the trajectory of their diseases.
With this experience as a nurse advocate in the policy environment, I used the opportunity to describe my personal experiences. One that resonated with staffers was about my friend and coworker who beat cancer on her second bone marrow transplant because she received great palliative care. Her triumph, tenacity when dealing with after-transplant side effects, and testimony of how she was able to return to work conveyed the importance of palliative care in every meeting I had. I also provided congressional staffers with key education about the differences between palliative care and hospice care.
After our lobbying efforts, a House subcommittee passed the PCHETA bill, moving our efforts one step forward. To be a small part of this great operation was personally and professional rewarding. It was an honor to be an ONS advocate, and I know it will be an even bigger accomplishment to see the PCHETA bill pass in the future.