Jill Biden Works With ONS Members and Others to Understand the Caregiver Experience
In coffee shops around the country, between clicking cups and grinding coffee beans, former second lady of the United States, Jill Biden, EdD, is quietly gathering small groups of oncology nurses, care coordinators, social workers, and family members who support patients with cancer to discuss the obstacles facing caregivers throughout the cancer journey. As part of the Biden Cancer Initiative’s (BCI’s) continued work to improve oncology care (https://bidencancer.org/), this coterie of caregivers is heralding the trials and triumphs that come with addressing the physical, social, emotional, and spiritual needs of patients with cancer.
As an oncology nurse with more than 40 years’ experience, ONS member, Ann Reiner, MN, RN, assistant professor at the Oregon Health and Science University, was invited to join Biden’s conversation in Portland, OR, and share the experience of a veteran oncology nurse working in the U.S. healthcare system.
“She wanted to hear from people experiencing the current system—patients, family members, and care providers—to understand what can be improved and where the BCI could put their efforts,” Reiner said. “We discussed possible efforts to make the system more patient -focused, either by building community support for patient advocacy or making specialty health care accessible to more people.”
During the conversations, Reiner noted a permeating feeling of hope throughout her group. Having the opportunity to speak with Biden and other caregivers, many of whom were cancer survivors themselves, provided insight to the care process and how systems could potentially be improved in the future.
Recognizing the Power of Oncology Nursing
During their conversations, Reiner noted that oncology nurses were clearly recognized for their efforts in the cancer care process. However, she was intrigued by some of the responses.
“We were recognized for our competency in psychomotor skills like delivering chemotherapy safely. The group was quick to mention our clinical expertise and the duty we have to provide safe care,” Reiner says. “However, I was surprised that they didn’t identify our skills with care coordination, recognizing our patients as humans first—not just by their disease. They didn’t fully recognize that oncology nurses listen to patients’ and families’ hopes and fears, provide education around symptom management, and encourage health literacy for all involved.”
Oncology nurses are driven to provide the best possible care for their patients by being experts in care delivery and embodying core competencies. However, nurses employ countless intangible skills throughout the cancer journey, responding to patients’ individual needs.
“We educate by assessing what our patients and their family members know, what they want to know, and what they need to know. We share information about symptom management like when they can manage on their own, when to involve their providers, and how to minimize toxicities,” Reiner said. “We coordinate care, either through the complex efforts of nurse navigators or by ensuring they have return appointments. Moreover, we listen to our patients. We help them manage the uncertainty of their disease and treatment; we support their hopes and we try to help with disappointments. Most of all, we problem solve. Whether facing concerns about safety, comfort, or support, we know to create interventions aimed at managing daily life in the context of their disease.”
Supporting Caregivers and Their Patients
Reiner explained that oncology nurses are in a unique position to support family caregivers. By expanding the knowledge that caregivers have of oncology nursing roles, nurses can lead the way as reliable resource for them moving forward.
“It’s important for caregivers to know the scope of what we do, because we are an always-available, invaluable resource to them,” Reiner said. “In the hospital, nurses are present 24/7. We’re often the first point of contact for outpatient care. Oncology nurses should acknowledge their skills: just as we assess our patient’s physical well-being by asking about physical symptoms, we must also observe and ask about their psychosocial well-being too.”
Reiner said that the best way to show the intangible elements of oncology nursing is to explain them through your actions.
“Continue to show up and be present when you are with your patients,” Reiner said. “Stay curious, and recognize their human dignity during their experience, so you can provide the best support possible.”
Continuing the Conversation
As part of BCI’s plan to accelerate the progress of cancer care and research, including creating systems that transform how the United States prevents, detects, diagnoses, treats, and survives cancer, it will hold future caregiver conversations as part of its #cancerFIERCE campaign. Previous discussions have also benefitted from other experts in oncology nursing, including ONS members Cindy Krasnecky, RN, BSN, OCN®, and JoEllen Ross, RN, who sat down with Biden in Natick, MA (http://www.metrowestdailynews.com/news/20180323/dr-jill-biden-visits-natick-to-talk-with-cancer-patients-and-caregivers).
“In my experience, every time we, as oncology nurses, speak up, speak out, and advocate for our patients, we can make a difference,” Reiner said. “We can contribute to real change.”
Oncology nurses are a crucial part of the advocacy conversation. They’re poised to provide expert insight to the patient and caregiver experiences. Learn more about ONS’s advocacy efforts (https://www.ons.org/advocacy-policy) and how to add your voice to influence the future of cancer care (https://voice.ons.org/advocacy/get-involved).