01/03/12





SidebarsHear Beth Macy's Story

Medicine and journalism are not so different. Ask writer and reporter Beth Macy, who will deliver one of the featured lectures at AMDA's upcoming annual meeting, Long Term Care Medicine-2012. A small-town newspaperwoman by trade, Ms. Macy learned more than she expected about long-term care medicine after a colleague asked her to document the woman's journey through dementia.

Ms. Beth Macy will deliver the Anne-Marie Filkin Lecture Sunday morning, March 11, during the closing general session of AMDA Long Term Medicine–2012, in San Antonio.

In an interview, Ms. Macy said she discovered that physicians and journalists share some common ethical considerations. As she began talking with her colleague, a notoriously sharp-witted and demanding copyeditor named Lynn Forbish, about her journey with Lewy Body dementia, Ms. Macy heard much about the challenges faced by caregivers too. She began to study the gaps between funding for caregiving and the demands those family members and friends face. She authored a story about Ms. Forbish's journey with dementia that became the basis for an essay in O, The Oprah Magazine. She produced an award-winning series of articles on the stark burdens of Alzheimer's and other dementias.

"I met with a book agent to talk about turning the series into a book," recalled Ms. Macy. "The agent said that people don't want to read about old people because it's too depressing." The put-down didn't stop her. She took every possible opportunity to share the story of her former colleague--such as the frustrations of the previously independent and capable woman who one day couldn't remember whether to hook her bra in the front or the back.

Empowering Tales

Ms. Macy continued to explore Ms. Forbish's and others' caregivers' stories. She spent time with families and examined what was faced by those that didn't have the financial resources for expensive care. Her stories are powerful and poignant. "If you tell these stories well, they are as compelling as hell. And if these stories move me, they will move others," she said.

Telling stories that are "downers" is part of the writer's challenge, she said." I just wrote about a veteran of the Iraq war with Crohn's disease and post-traumatic stress disorder who came back in '07 and could not find a decent job. One night, he provoked the police into shooting him after a high-speed chase. This was a very sad story and hard to report. Some of the people involved didn't want to talk to me." However, she stressed that "there are stories people should feel bad about" that still communicate a positive message."

Storytelling is part of the physician's arsenal as well, she added. When patients and families need to understand what is happening to them, especially when facing dementia, she encourages doctors to take the time to tell the truth in an understandable narrative. "You can tell a difficult story in a way that empowers people to do something positive. That is a task that we share," she said.

The Ethics of Storytelling

In a recent entry on her "Intrepid Paper Girl" blog (intrepidpapergirl.com), Ms. Macy stressed some rules of journalistic ethics that she said apply to everyone who tells others' stories, including physicians.

► How you treat people matters. "Being honest is important. People do want to know what to expect in the future,"Ms. Macy said. While she understands that physicians want to be kind and compassionate, she said, "It is important not to pussy foot around a difficult issue. I interviewed a woman who had no idea her husband had Alzheimer's disease and was barely hanging on. She felt that their physician was too uncomfortable talking about this as a fatal disease.

► Objectivity is a worthy goal, but "sometimes it is important to bend the rules. I know a geriatric psychiatrist who has friends with parents who won't go to the doctor's office because they are afraid of the diagnosis. He will meet them in the parking lot and talk with them in a nonthreatening way," Ms. Macy said. "It's unconventional, but it works.

While it is important to be objective, Ms. Macy noted that it also is necessary to know when someone needs help--even when he or she denies it. "The husband of one woman with Alzheimer's said that everyone who knew the couple offered help, but he didn't take any. He regretted that later," she said. There is some shame around dementia "that you can help take away."

► Gently persevere. "You may have to ask questions several times to get all the answers and get a picture of what is happening with the person," said Ms. Macy. She noted that this is particularly true when discussing an intimate problem such as dementia.

"Many people see this as a private, embarrassing thing. In fact, people often see the embarrassment before they see the disease," she observed. It is important to understand that the shame, embarrassment, and fear people may feel can make them hesitant to share their stories. Gentle but firm questioning can make it easier for them to open up and talk.

Senior contributing writer Joanne Kaldy is a freelance writer in Harrisburg, Pa., and a communications consultant for AMDA and other organizations.