Advocacy Grows Through Personality as Well as Profession

June 13, 2019

By Barbara C. Wampler, BSN, RN, OCN®

The word advocacy comes from the Middle English word “advocacie” or “intercession” and the Anglo-French word “advocassie,” meaning “pleading.” As a profession, I believe nurses pride ourselves as being advocates for our patients and their families. I can easily say that most nurses—myself included—think of advocacy in terms of daily practice. We’re always making sure patients have the right resources and knowledge and have their basic needs met to get through their daily treatments.

But beyond daily practice, that definition has grown. The complexity of treatments, along with the needs of patients and their families, require us, as a profession, to redefine advocacy as it relates to those in our care. Do patients know both their short-term care plan and their survivorship plan? Research has shown the need for earlier intervention in hospice and palliative care, but how is that information and education delivered to those caring for the patients? Why should oral chemotherapy agents be covered under prescriptive designations and not medical just because they are oral agents?

Participating in ONS’s Capitol Hill Days in September 2018 was a real education about how much our patients’ lives are guided by people outside of the medical field—those far from the chairs and beds in which our patients battle their cancer.

From this experience, I felt compelled to encourage my nurse colleagues in the Greater Tampa Chapter to become involved in the legislative process. Knowing that knowledge is our greatest resource, we invited Grace Albergo, Tampa Bay district director for Senator Rick Scott (R-FL), and Marcia Mejia, district director for Representative Kathy Castor (D-FL), to join us in a panel discussion in April 2019. During the meeting, they shared how we can support legislation to improve our patients’ lives. But more importantly, we shared our personal stories of the hardships our patients face on a daily basis with the legislators’ staff.

We told them how one patient who had limited finances was unable to purchase her oral medication, and she did not follow up until the tumor progressed. We spoke about how others have gone into debt to pay for their treatments. One patient—who had no idea of what his survivorship plan was—haphazardly got scans from various providers that had no value, costing him and his family valuable financial resources.

Unfortunately, these personal stories are all too common. Even though I had heard these kinds of stories for years, I was still in shock whenever a patient shared a similar struggle. During our conversation with the directors, we also asked for legislative support for three bills that ONS has been championing for years: Palliative Care and Hospice Education and Training Act (PCHETA), Cancer Drug Parity Act, and Cancer Care Planning and Communications Act. Our guests assured that they would share our patients’ struggles and our request for support with their legislators. Both staffers remarked that personal stories have a far greater impact for change than cold, hard data ever has.

Our next step is to continue fighting for change through letter writing, calling, or meeting with legislators during their time away from Washington, DC. By sharing stories of patient struggles, we can help convey the reality of health care to our elected officials. The World Health Organization has designated 2020 as the Year of the Nurse, and we have to take advantage of our strength as a profession to make change happen.

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