BENNINGTON >> The Center for Communication in Medicine on Thursday presented a panel discussion on dealing with serious illness in front of a full house at Oldcastle Theatre Company.
The discussion, entitled, "Building Your Team and Navigating the System," covered a number of talking related to living with a serious illness, including how to better communicate with your doctors, how to build a team of family, friends, and medical professionals to help you navigate the system, and, for friends and family, how to step back and let the patient make their own decisions. Over 120 people came out for the event.
"No one likes to think or talk about serious illness," said Dr. Bernard Bandman, CCM co-founder, Southwest Vermont Medical Center psychologist, and forum moderator, "but the fact is, we, or someone we love, will face that someday."
The panel was made up of multiple myeloma patient Jan Martin Bopp, his caregiver, Rose-Marie Pelletier, three of his doctors, SVMC primary care physician Dr. John Hearst, SVMC oncologist Dr. Orion Howard, and SVMC palliative care physician Dr. Allen Hutchinson, and CCM co-founder and medical humanist Celia Engel Bandman.
Bopp said that his team, which built up around him as he continued down the path of living with his illness, had been critical for him. "I would not be here today without that support," he said, "I live with a life-shortening disease, but it has provided me with many opportunities." Those opportunities, he said, included making many new friends, and, as a former schoolteacher, an opportunity to continue to educate, this time regarding the realities of living with multiple myeloma. "If I didn't have the gift of my teams," he said, "I don't know that I would be here, eight years in, which is already beyond the expected lifespan."
At one point, Bandman asked Pelletier about how she came to be Bopp's caregiver. Pelletier said that Bopp, a former colleague, had been worried, as his mobility began to decrease, how he would be able to get to Boston for his appointments at the Dana-Farber Cancer Institute. She responded, "You're not going to have to worry about that, I'm your ride." Ever since, every month, or every three months, she has traveled with him to Boston.
"I don't like the term caregiver," she said, "because it sounds so one-way, like I'm giving care and getting nothing in return, when that couldn't be farther from the truth." She said Bopp's friendship and their conversations on the drive are what she gets in return.
All three doctors spoke about the importance of patients and doctors having good relationships, and stressed that communication was key, but that simply showing up to appointments mentally prepared to be open and honest is a huge first step. Engel Bandman, who developed a workbook to facilitate communication between doctors and patients, which everyone in the audience received a copy of, encouraged patients to avoid being what they assume are "good patients."
"Patients want to be good patients," she said, "they want to do what their doctor says, without question." However, she said, this lack of communication can lead to doctors not being informed about important side effects, or about the patient's emotional health. Questions also help the doctor understand how much of their explanation is getting through to the patient, and which things they should go over again or differently.
Pelletier, who goes into Bopp's appointments with him, said that she was continuously amazed by the level of communication between him and his doctors. "Jan is not only on a first-name basis," she said, "he is embraced when he walks into those rooms."
The panel discussion was followed by a question and answer session, during which the panel attempted to answer questions about how to encourage people suffering from serious illnesses to speak up and let their friends and family help them, and the opposite, how, as a patient, to assert your right to make your own decisions. "There's no right or wrong way to go through this experience," said Engel Bandman, who suggested that friends, families, and caregivers focus on helping the patient live in the patient's own way, focusing on their wishes.
The event was followed by a reception, which was catered by Kevin's Sports Pub and Restaurant. Other sponsors of the event included Bennington Potters, the Vermont Country Store, Jerome Construction, Man of Kent, MH Professional Engineering, and the Vermont Community Foundation.
A recording of the panel discussion will be available on Catamount Access Television. For more information about CCM and this project, visit SpeakSooner.org.