(Host) Advances in science and technology have allowed doctors to keep many people alive longer. But patients can feel anonymous and helpless in the maze of big medicine and managed care.
A Southwestern Vermont group is trying to bridge the divide between patients and medical practitioners, most recently with a new video.
VPR’s Susan Keese has more.
(Keese) The video is called Voices from the Lived World of Illness. In it, four Vermonters diagnosed with incurable cancer talk about what it’s like to be suddenly in the hands of medical professionals.
They talk about the loss of identity and independence a serious diagnosis often brings. They talk about the ways their doctors can help them, even when they can’t save them.
(Man) “I have communications problems – like metastatic. I don’t recall ever hearing that word before. But he was talking like it was common knowledge.”
(Woman) ” The problem I’ve had with oncologists, once you say ‘pancreatic cancer’ you can see it in their eyes. They think there’s nothing they can do for you.”
(Woman) “It’s not unreasonable to expect the doctor in your community, who’s going to be your treating doctor, to follow a lead. Because the world is smaller. And the internet is there. And so some patients are going to come with a lot of knowledge and they’re going to want their doctors to take that information seriously, or discount it for a good reason, and not just dismiss it.
(Keese) The last speaker was Pat Barr, a Bennington lawyer, wife mother and breast cancer advocate. Barr died of cancer in 2003. But before she did, she helped launch the Institute for Medical Humanism. It operates out of Bennington’s Southwestern Vermont Cancer Center.
(Bandman) “Our work at the Institute of Medical Humanism is really to improve communication between medical practitioners and patients.”
(Keese) Bernie Bandman is a psychologist. He’s worked extensively with people living with serious illness. He and his wife Celia Bandman co-founded the institute with Barr. They also co- created the video.
Celia Bandman is the cancer center’s medical humanist. Her background is not in medicine but in literature and ideas. Her job is to serve as a translator between the language of medicine and the reality of a patient’s world.
(Bandman) “I’ll never forget the experience when a patient told me, I don’t even know what my diagnosis is. Do you know?’ So I go to tell the doctor and he said, I’ve told her five times. But doctors will go in and explain something. But I’ve also observed that they’ll say it five times. And each time it’s a little bit louder, but the same exact words.”
(Keese) The Bandmans say it’s not that doctors don’t care.
(Bandman) “The fact of the matter is people go into medicine because they truly car. They’re empathetic. Doctors and nurses are experiencing their own grief at what they’re not able to do at this point.”
(Keese) For the last three years the Institute has also sponsored ‘conversation hours’ for doctors and nurses at the cancer center.
(Bandman) “There are ethical issues that come up – their own struggles in terms of delivering difficult or bad news to a patient. And we’re seeing this happen more and more, where the doctors are coming back and referring to the previous conversation hour and what we talked about and how that actually has come into how they practice medicine.”
Keese) The video is an attempt to take the patients’ view of the medical experience to a wider audience, including hospitals and community groups. It’s the first of four the institute has planned.
For Vermont Public radio, I’m Susan Keese.