In my July 7 blog Patient Resource Consultant, I shared the circumstances in which I found myself unexpectedly working in cancer care. In essence, Pat Barr, a breast cancer patient and a good friend, convinced the Bennington cancer center’s medical director to hire a patient advocate and volunteered me. Reluctantly, I accepted but changed the job title to “patient resource consultant,” which more accurately described how I envisioned my role.
Several months after I began this new job, I was interviewed by Nicole de Beaufort for News from the Network, a publication of the Breast Cancer Network, a Vermont based advocacy organization. I’d like to share my responses to her questions about the work of a patient resource consultant. So, here are some excerpts from an interview that took place in Fall 1998.
NdeB: You are a writer. How does working with cancer patients affect your writing?
CB: At the moment of diagnosis, a person’s life changes forever. They are faced with a blank page- the future. In writing, one is always trying to make sense of this. Every writer examines their life- a newly diagnosed patient is forced to. We have a lot to learn from someone newly diagnosed.
NdeB: When you started this job, I’m sure you had expectations about what it would be like. What surprised you?
CB: I was surprised by how quickly- almost instantly- a stranger allows themselves to be vulnerable to me. It is a gift from them. The quickness of it is startling. This position has never existed before. I’m sure I would have been prepared for this experience if someone had done this work before, but I’m traversing unexplored terrain. It’s true that people have to trust me and go with it. It’s a great responsibility. What I do is try to help a patient feel taken care of in areas outside of strictly medical treatment.
NdeB: How have patients reacted to you and the position in general?
CB: There has been openness. More so with women. My experience is that women in our culture are allowed to let themselves feel the range of emotions that cancer can bring. The role of men is usually to be in control- it’s a whole different language with men. However, there’s a universal language once one is diagnosed with cancer. There is fear. There is the traditional metaphor of a war or a battle. There is shame. My job is to be intuitive and feel out what it will take for a patient to feel cared for in a holistic sense. My position focuses on quality of life issues.
I go on to say that “I don’t want anyone to fall through the cracks.”
Looking back at the interview, I could see that I recognized a communication gap between patients and healthcare providers, which could be a barrier to addressing important non-medical needs such as unaffordable medications, transportation to treatments etc. Although not noted in the interview, I can tell you that as patients became more comfortable with my role, they began sharing frustrations about not understanding treatment options and quality of life considerations. This, of course, could be a major barrier to making informed decisions about care.
It’s true that writers like myself work hard to build a narrative based upon imagining what someone may be thinking or feeling but I quickly understood that patients were the only ones who could accurately describe their experience. It took 5 more years of fieldwork before we took the next step and, with the support of the hospital’s CEO, implemented a medical humanist program at the cancer center. This innovative model became a vehicle to help patients voice their questions and concerns and actively engage in decisions about care. You can say that the program has helped patients feel empowered to fill in a “blank page” and have their say about preferences for care and a future they hope for.