OUR BLOG: A MEDICAL HUMANIST'S NOTES
Transforming Medical Crisis into Opportunities to Find Meaning in One’s LifeOctober 16, 2019 at 1:22 pm · filed under communication, family & friends, Newly Diagnosed, Patients
The Center for Communication in Medicine, which I am a founder, decided that our next SpeakSooner Community Education Program on October 26 in Bennington would focus on the theme of transforming a medical crisis into an opportunity to find meaning and joy in one’s life. Planning this event brought to mind a woman whom I had known from time passed.
She and I met in 1984 when my son and her daughter had attended the same nursery school. At the time she had been referred to as “the lawyer with a high degree of competence.” However, when she introduced herself to me she said, “I’ve been diagnosed with breast cancer.” For reasons I couldn’t explain I heard myself say, “Perhaps you can think of it as a gift.” Immediately, I wished I could have swallowed my words but it was too late.
“What do you mean?” she asked.
“For me,” I said, “we don’t always know the reason things happen to us but in time it can reveal itself.”
I scribbled my name, phone number and address on a scrap of paper. I didn’t expect to hear from her.
Pat called me the next morning and we took our first walk together. It was a long walk. I explained what I meant. She listened and asked questions. When she talked, I listened and asked questions. You could say we walked and talked for 19 years and became best friends.
In many of our conversations Pat acknowledged that she’d rather not have been diagnosed with cancer but it became a gift of sorts, an opportunity to use the hand she was dealt to find a greater meaning to her life.
In 1999, her breast cancer recurred. She was a patient again. But during the intervening years she transformed her personal experience into a drive to secure funds for breast cancer research. As a founding member of the National Breast Cancer Coalition (NBCC) and politically savvy attorney, she helped US Senator Patrick Leahy (VT) recognize that because women served in the military there might be research funding available through the Defense Department budget. It was and they were successful in securing funding, which continues to this day.
Now she turned her attention to the role of patient advocate in cancer care, which she and others in the NBBC believed should be an essential service. She understood that the healthcare system was challenging to navigate, even for someone with her past experience and educational background. In her inimitable style, she confronted the Director of Medical Oncology at the regional cancer center in Bennington, VT and told him he needed to hire a patient advocate. He also recognized the need and agreed to fund a 20/hour per week position but asked her to draft a job description and whether she had anyone in mind.
This is where I once again came into the picture. Pat asked if I would write a job description and encouraged me to consider taking the position. She had the personal experience of having me as a friend who offered support and was someone who did not shy away from talking with her about emotional struggles.
I recall telling her, “I don’t write job descriptions. I’m not that kind of writer and it’s not something I’d feel comfortable doing. Besides, to advocate for another you must know the experience personally.”
She replied, “Call it what you want but you’re empathetic and would be good at helping patients navigate the healthcare system. Besides, you don’t get paid for your short stories and you would with this job.”
I met with the Medical Director of the Cancer Center and he hired me. I refused to use the title patient advocate so I called myself a “Patient Resource Consultant.” For the most part I did what writers do—observed, listened and read (doctors’ notes). I also helped patients access supportive resources within the medical center and in the community. It was through this experience that I witnessed a communication gap between the language of medicine and the patients lived experience of illness, which often resulted in misunderstandings.
In 2001 Pat stepped in again and called a meeting with the CEO of the hospital, which my husband Bernard and I also attended. By this time the three of us founded the Center for Communication in Medicine, a nonprofit with a mission of improving communication between patients, families and healthcare providers. We suggested that the cancer center offer a program to help bridge the communication gap. Through what I had discovered working as a Patient Resource Consultant, I envisioned a program where I would meet with patients after their visit with the doctors and ask a series of questions about what they understood about their diagnosis, prognosis, treatment plan and whether there was anything they would have liked to discuss with their doctor. I shared the note with the cancer care team, which helped to facilitate communication about misunderstandings. This is how the “Medical Humanist” model was born.
You could say that Pat’s diagnosis was a gift to her and me. She transformed how breast cancer research was funded and I had an opportunity to create a program that improved communication in cancer care. But, like her, I wish she didn’t have cancer.