Palliative Care is needed everywhere. It is especially impactful in under-served communities as highlighted by this important study….
For the last four years, I served as a project manager for Drs. Stacy Fischer and Regina Fink’s American Cancer Society funded study that focused on improving palliative care outcomes for Latinos with advanced cancer. The randomized control trial used lay bilingual, bicultural patient navigators to deliver a culturally-tailored intervention to Latino patients with stage III or IV cancer.
Our team enrolled 223 patients, who were randomized into one of two groups: control or intervention. The control group (N=111) received a packet of educational materials focusing on advanced care planning, pain management, and hospice. The intervention group (N=112) received this educational packet plus 5 home visits from the patient navigator. I had many roles as the project manager including training the patient navigators and meeting regularly to discuss recruitment and challenges with the intervention. My passion for research in palliative care really grew in this role and evolved as I continued to work closely with the navigators. I learned quickly that training and education are ongoing processes in the field of research.
Reviewing the Patient Navigator Field Notes
We analyzed 499 patient navigator field notes to discern the multiple aspects of their role. We used Atlas.ti to identify key words or comments from the field notes that were then grouped into common themes to expand our understanding of the patient and family palliative care needs as well as the role of the patient navigator. The qualitative analysis confirmed my desire to help undeserved populations with the use of patient navigation. We found that most of the themes revolved around the study subjects’ values including family, cultural, personal and spiritual. We identified the role of the navigators to include: activation, advocacy, access, awareness, rapport building, exploring barriers, symptom screening, and providing support.
One of the visits I reviewed still stands out from the rest. A male patient with metastatic colon cancer struggled with language barriers when completing paperwork from Social Services. Our navigator assisted him with the process. She conveyed the following in her field note:
“He told me about receiving a form from Social Services. He does not read very well and has little education. He recanted how the woman at the office yelled at him and told him to complete the form in Spanish. The form was in English and he could not fill it out. He came home totally humiliated with his tail between his legs.”
Reading this note was hard; I hurt for this patient and his experience. As I read on, the navigator explained that she assisted this patient with the paper work and helped the patient with other resources. I was so thankful for all of the hours we worked together on expressing empathy, reducing barriers, and activating the patient to take control of their health care. This one example proved to me how important the patient navigator intervention has been in creating opportunities for the patients to share their stories, enabling the patient navigators to help with resources, and build trust. This opened the door to discuss advance care planning, pain management resources, and the concept of hospice in a culturally respectable way.
Currently, with funding from the National Institute of Nursing Research, we are testing this similar patient navigator model in other seriously ill Latino populations. I am using what we learned and confirmed in regards to the role of a navigator to provide more creative training for the patient navigators in our current study. Incorporating this patient navigator model with other cultures has a chance to improve palliative care access to disparate populations.