Forum to discuss living with serious illness
BENNINGTON >> The Center for Communication in Medicine will host a forum entitled "Building Your Team and Navigating the System," about how people suffering from serious illnesses and their families, friends, caregivers, and medical providers can increase communication and support each other as they navigate through life with the disease.
The program, from 5:30 p.m. to 7 p.m. on November 12, is part of the Speak Sooner initiative, and will take place at Oldcastle Theatre Company on Main Street in Bennington. The event will involve discussion with a panel made up of patient Jan Martin Bopp, caregiver Rose-Marie Pelletier, Southwestern Vermont Medical Center primary care physician Dr. John Hearst, SVMC oncologist Dr. Orion Howard, SVMC palliative care physician Dr. Allen Hutchinson, and medical humanist and CCM co-founder Celia Engel Bandman. The forum will be moderated by SVMC psychologist and CCM co-founder Bernard Bandman.
Bernard Bandman said that the inspiration for forming CCM had come 15 years ago, when he and his wife Celia, a writer, recognized a communication gap between the medical providers and patients and their families. They started a program in which they asked patients with serious illnesses about their experiences, including questions they would liked to have asked their doctors, but didn't, and if they had understood what their doctors were telling them. They found many doctors that had no idea that some of their words were being misunderstood, and many patients who were too afraid to ask important questions.
Eventually, they created a workbook, "Difficult Conversation: Finding a Path Through Illness" for patients and caregivers, to provide a framework and help them understand their own issues before they visit their doctor, so they have help in knowing which questions to ask. Lindy Lynch, one of the sponsors of the event, said that she used the workbook both as a caregiver for her husband, and again when she was diagnosed with cancer. She said that it helped her speak up and open lines of communication with medical providers, and now she wants to give back and help those who haven't yet found their voices. She also spoke about how important it was to have a team of family, friends, and medical providers working with her, saying, "I wouldn't have made it without a team."
Bopp, who was diagnosed with multiple myeloma, said that he would have benefitted greatly from being introduced to the workbook earlier in life. "That phase of my journey would have been easier," he said, "There were no support groups for me. I had to, at times, struggle to get the information I needed. I had to learn to ask a lot of questions." He said that many people go into hospitals after their diagnoses wanting to be a good patient, and unquestioningly accept any information their doctors give them. However, he said, every person's path through living with a disease is different, and that this attitude often causes people to not speak up when things aren't working for them. "You have to learn that it is not not offensive (to the doctor), the better your relationship is, to better your patient care will be."
Bandman said that, as a doctor, his job would be much easier if patients would speak up about the questions on their minds. "Most often," he said, "we don't know what questions to ask. It's very helpful when patients come prepared for the doctor," noting that this also shows the doctor that the patient is actively engaged in their health care. He advises patients not to just hand over all of their decisions to the doctor, saying, "You have to take responsibility." When the patient is unable to take that responsibility, he said, is when it is critical that caregivers know how to step into that role.
"You cannot be intimidated," said Lynch, who noted that, while some doctors were not receptive to how active a role she was taking in both her and her husbands medical decisions, most came to realize how useful it was to have a patient asking important questions, and the doctor-patient relationships ended up being very positive. "They can take time," she said, on building relationships.
Bopp said he learned over time that doctors could not read his mind, and approached them with, "This is what I need and want for you to know so you will better understand my condition." He said many doctors wanted to prepare him for the end, while he was more concerned with sustaining his quality of existence. He said no one should hesitate to speak up about problematic side-effects of their medications, or the need to change from the program they're currently on. "I keep re-visiting that guidebook," he said, noting that his answers change as time goes on.
The event is free, but reservations are requested, and can be made by visiting speaksoonerbennington.rsvpify.com, or by calling 802-442-5800. Everyone in attendance will receive a free copy of the workbook, which is also available at speaksooner.org. Sponsors of the event include Bennington Potters, the Vermont Country Store, Jerome Construction, Kevin's Sports Pub and Restaurant, Man of Kent, MH Professional Engineering, and the Vermont Community Foundation.
"Anyone with a serious illness should not go it alone," said Bopp, a retired high school teacher who founded a myeloma support group, "I can't imagine now being without either one of my support teams... The more people that learn to benefit from this resource, the larger will be the community that will be built."
"When you really believe in what you're doing," he said, "It really is a joy to do that work. I live my illness out loud, open and transparent, because it might be of help to someone else."
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