BENNINGTON — The choices we make about end-of-life care aren’t always what happens at the end of life. Advance Care Directives, legally binding forms that dictate whether or not we want extraordinary, life-prolonging measures to take place, in many cases are scrapped and attitudes changed when we are actually faced with those life and death decisions.
“This is often a very difficult subject to talk about,” said Bernard Bandman, founder and executive director of the Center for Communication in Medicine, a Bennington non-profit that develops programs and tools to improve communication between patients’ families and health care professionals. “The results were surprising, to say the least.”
A few months ago, a large-scale study came out from Brigham and Women’s Hospital in Boston that included thousands of clinicians across the country who spoke to tens of thousands of patients in-depth about Advance Care Directives. Then they followed those patients over many years until the time came when they had to actually face end-of-life care decisions.
Most of those people in the initial meetings chose comfort care — a painless, managed treatment option without any extraordinary measures being performed to extend survival. However, what they found happened in the end was that the vast majority of those who initially chose comfort care ultimately changed their minds and decided to pursue more aggressive treatments.
“That surprised many people in the medical world,” says Bandman. “What happened was during the course of their lifetimes, from the time they signed their Advanced Directives, there weren’t any ongoing, substantial conversations about what that treatment option would actually look like. Those conversations after initial treatment were not there, so when patients were faced with actually following through with their directives, there was great fear, and survival became more important.
“The majority chose aggressive treatments with more hospitalizations, emergency room visits, pain, and a greater emotional toll on the patients and their families. What resulted was more debilitation, and, surprisingly, no significant increase in life.”
Bandman is confident that fear is the driving factor in scrapping the choices patients made before they became ill.
“We don’t know what’s coming next. We don’t want to leave this world. These patients were not prepared,” Bandman said.
The Center of Communication in Medicine is having a community presentation on May 24 at the Bennington Performing Arts Center on ways to identify and remove those barriers to meaningful conversations along the trajectory of illness.
“We want to identify what their concerns are and help them with ongoing communications so that they are actively engaged along the journey,” Bandman said. “This allows patients to anticipate what is going to happen; they’re part of that decision process, they understand it, they may not like it, but they better understand all that this entails, so they are better prepared in making these decisions without fear or panic.”
Bandman believes that Advanced Care Directives need to be living documents that are openly discussed with all involved, including family, primary-care physicians, attorneys, and the patients themselves, in an open dialogue, instead of signed and then shuttered away in a drawer for years without discussion and contemplation. Then, when a person is sick, there needs to be an open conversation that revisits some of those decisions during the advanced care planning with all involved, including doctors and families.
“We have found over the past 20 years that people who do this are much better prepared to understand what it means when you reach that point when there are no treatments that are going to change that outcome.”
That approach, Bandman feels, will allow patients who want to choose comfort care to better follow their desires to do so, allowing new models of care that have ongoing, built-in conversations as part of the plan with all those dealing with serious illness, starting with the family doctor.
“There are frequent opportunities for caregivers to check-in, annual exams, and office visits each year where everyone involved can bring this up and have ongoing conversations. That it has the power to transform how people process this information over the long haul and be better prepared for the next steps,” Bandman said. “It’s patients that are going to be the drivers of this. Society doesn’t necessarily want to think about these uncomfortable issues. Still, we have to end the denial surrounding end-of-life care and truly understand that this happens, and we need to keep talking about it.”
The program will include a screening of the documentary film “Prognosis-Notes on Living,” which deals with one woman’s journey through these issues.
Following the screening, there will be a panel discussion and Q&A with Bandman and other experts in the field, including attorneys, doctors, and people who have faced these decisions first-hand.
The Center for Communication in Medicine’s May 24 SpeakSooner community education program Comfort or Conflict in End-of-Life Care: A Discussion About What’s Missing With Advance Directives will be presented live at the Bennington Performing Arts Center and streamed online at speaksooner.org. Registration for the event is free and open to the public.