In digging through files, I discovered a job description of my first position in the world of cancer care. Memories flooded in, including how I initially refused to accept the job. Let me tell you how the door was opened.
The year my work began was 1998 and, not coincidentally, it was at the time my dear friend Pat Barr had a re-occurrence of breast cancer. Through her first experience as a patient she understood the value of supportive resources in navigating the healthcare system. She also happened to be a founder of the National Breast Cancer Coalition, an organization whose mission was to increase funding for breast cancer research and promote the inclusion of patient advocates at cancer centers to assist in navigating the healthcare system. So, in Pat’s bold style, she approached the oncologist in Bennington, who was also her treating doctor, and insisted he hire a patient advocate. He agreed but asked if she had any suggestions for who could fill the position. Pat told him to hire me and he didn’t resist. Needless to say, I was stunned when she volunteered me. I declined because I could not imagine myself in that job and was certainly not qualified. Besides, what would a writer be doing in that position anyway? After some prodding from Pat, I agreed to give it a try. But I was not comfortable with the title “Patient Advocate” because I was never a cancer patient or social worker, those in a better position to understand the experience. So, I accepted the position under the condition that the title be “Patient Resource Consultant.”
You may ask, what is that? Frankly, I wasn’t quite sure. It was only after being hired that I drafted a job description acceptable to the oncologist and myself. As is customary, what I described would be used to evaluate my performance. Below is a summary of the contract that was approved.
We agreed that–“The goal of a Patient Resource Consultant is to identify and coordinate all non-medical support services for the patients of Dr. Eric Pillemer’s oncology practice.” (His practice was later purchased by the hospital and became Southwestern Vermont Regional Cancer Center and I became an employee of a healthcare system.)
The job description offered a long list of responsibilities. Frankly, I didn’t know what I was getting into but I told myself that I would be open to the experience. Below is an edited version of what I was expected to accomplish.
- Develop or assist in developing with other team members an assessment tool to determine a patient’s non-medical needs.
- Meet with all newly diagnosed patients and perform an assessment to identify non-medical needs.
- Assess non-medical patient support services present in the community and coordinate access to them.
- Develop strong working relationships with area agencies and professionals.
- Identify non-medical services needed within the community.
- Draft a plan for provision of new community services and funding of such services.
- Educate Southwestern Vermont Medical Center medical staff about the non-medical needs of oncology patients and involve them in accessing and integrating these services.
My performance evaluation form noted that I was an independent contractor responsible solely to Dr. Pillemer and to be considered an integral part of the cancer care team. I would present an annual self-evaluation in conjunction with an annual performance review to be conducted by Dr. Pillemer. My contract would be reviewed on an annual basis and could be renewed at that point.
Today, as I look over the job description, I am shocked at its scope. Can I say that I accomplished all of the tasks? No, but the job offered me an opportunity to hear firsthand what patients identified as their needs and concerns, which were not always expressed to the medical staff. And in the course of our conversations, many patients and loved ones would confide that they didn’t understand the diagnosis or treatment plan and had not asked about how they were coping with illness. I shared this information with the cancer care team, which was used to open detailed discussions of their health status and plan of care.
I certainly recognized that patients were being treated with care and kindness. But, it was apparent to me that improved healthcare communication could lead to a better understanding treatment options and access to supportive resources. Looking back, I can see how core elements of the role I later developed as a medical humanist were conceived in 1998 and came to life in 2003 when our pilot program was formally implemented at the cancer center. I am forever grateful to Pat Barr for prodding me to take a job for which I had no qualifications and Dr. Eric Pillemer for opening the door.