The breadth of understanding that can come from a face-to-face conversation is hard to underestimate. More than 100 oncology nurses discovered the power of advocacy, education, and one-on-one conversations during ONS’s 2018 Capitol Hill Days in Washington, DC.
For ONS member Candace Schiffer, NP, AOCNP®, a nurse practitioner at the Monter Cancer Center in North New Hyde Park, NY, her experience led to new relationships with representatives on Capitol Hill.
“As part of ONS Hill Days, we were on Capitol Hill to request support from congressional representatives for the Palliative Care and Hospice Education and Training Act (PCHETA), the Drug Parity Act, and other bills important to ONS’s advocacy work,” Schiffer says. “We met with Senator Chuck Schumer’s (D-NY) office and Senator Kirsten Gillibrand’s (D-NY) staff. We then met directly with Representative Tom Suozzi (D-NY) and Representative Peter King (R-NY).”
Schiffer’s meetings were meticulously scheduled, and she was prepared to deliver the nurse’s perspective in patient-centered oncology care.
“We were tremendously well received in all our meetings on Capitol Hill,” Schiffer notes. “And meeting with Congressman Peter King led to an awesome conversation about palliative care, end of life, and hospice. We provided all our appointments with education, resources, and an understanding of what patients are facing in cancer care.”
During her meeting with King, Schiffer and her colleagues outlined the importance of palliative care, survivorship care planning, and the resources needed when caring for patients along the cancer continuum. From that information, a unique conversation emerged.
Reframing the Cancer Conversation
King had one final question for Schiffer and her colleagues before they left his office—one that many oncology nurses have heard before.
“Cancer is heavy stuff—death and dying. How do you do what you do every day?”
Schiffer responded the only way she could.
“Is that what you think we do? Oncology isn’t about death and dying, it’s about life and living beyond cancer. That’s why we’re here—to talk about palliative care and survivorship initiatives. Palliative care is the supportive care needed to get patients through their cancer treatment, and survivorship care planning and implementation is the ongoing care, surveillance, and communication from one healthcare provider to another. Oncology nurses are educated caregivers, patient advocates and cheerleaders, family supporters, and evidence-based practitioners, and when we get down to it, we’re seeing cancer survivorship rise year after year.”
Reframing the conversation—especially with lawmakers and elected officials—is an important component of oncology nursing advocacy work. Oncology nurses have the unique perspective needed to overcome misunderstanding and share vital information that can transform the future of cancer care at the local, state, and federal level. With King, Schiffer was able to illustrate the differences between palliative care and end-of-life care and how bills like PCHETA are vitally important to support the ever-increasing population of U.S. cancer survivors.
“According to a 2016 National Cancer Institute report, there are more than 15.5 million cancer survivors in the United States,” Schiffer says. “It’s not about death and dying. I shared with Congressman King a case I had when I was a new nurse practitioner. I told him about a 34-year-old patient who was so terrified by his cancer treatment that he was considering not doing it. By helping that patient understand that oncology nurses, physicians, and medical staff were going to be on hand to help him manage his symptoms, pain, and side effects, we were able to get him into treatment so he could live and return to his young wife. Through our guidance, he followed our referral for fertility preservation and was able to start a family after his treatment.”
Ultimately, King was so impressed by Schiffer and her colleagues’ conversation that he requested her contact information to follow up with her as new healthcare bills come up.
“We were so glad he asked that last question,” Schiffer says. “We want to provide that explanation of oncology to people. We want to be resources for these individuals as they’re looking over the hundreds or thousands of bills that come to them each year. I told him he could call any one of us to help him understand the depth and impact of healthcare bills on patients and providers—this is our passion!”
Continuing the Discussion
Schiffer returned home with a full docket for future advocacy work. She and her Long Island Chapter colleagues are set to work with Suozzi’s office, and King’s staff has also reached out for a follow-up meeting.
As part of new local advocacy efforts, Schiffer and her chapter are planning initiatives to recruit and train other nurses in the area to meet with elected officials at all levels of government. To her nursing colleagues, Schiffer notes that you don’t have to be a political science expert to engage in meaningful advocacy work.
“As a nurse practitioner, I would receive information about advocacy and lobbying, and I always felt that it was daunting,” Schiffer says. “But we really don’t have to know everything about the legislative process or the ins and outs of passing a bill. We’re there because we’re experts in oncology nursing. I want to encourage everyone—including student nurses in oncology—to do something like ONS Hill Days, so they can see that experience firsthand and feel what it’s like to make a difference on that level.”