End-of-Life Choice, Palliative Care and Counseling

End-of-life questions: Documentary tackles the issueby Sonja

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By Karen Lacke Carrig
Sept. 18, 2010
JSOnline.com

Terry Kaldhusdal and Mike Bernhagen have become close friends – so close, in fact, that Bernhagen recently asked Kaldhusdal to serve as his alternate health care agent should he become incapacitated and unable to make decisions for himself.

“I can’t think of a more knowledgeable person than Terry, especially after our work together on this important project,” Bernhagen said.

The project is “Consider the Conversation,” a documentary film that examines how 21st-century Americans live at the end of their lives.

Kaldhusdal, a fourth-grade teacher at Magee Elementary School in Genesee Depot, and Bernhagen, Rainbow Hospice Care’s director of community engagement in Jefferson, spent nearly 3,000 hours researching and producing the film.

Bernhagen, 45, lost his mother, Rita, in 2003 to congestive heart failure and vascular dementia. “To this day, I’m still haunted by a nursing friend’s simple question six months after Mom’s death: Didn’t anyone mention hospice as an option to your family?” Bernhagen said.

After learning how hospice could have helped his mother stay comfortable and avoid trips in and out of the hospital and nursing home in the final weeks of her life, he was angry and embarrassed.

He was angry because none of the medical professionals involved in her care suggested it. He was embarrassed because he felt he should have known better. But then again, his mother never talked about her end-of-life wishes and Bernhagen didn’t know a thing about hospice care despite having worked for 10 years as a business development professional with two local medical systems.

Bernhagen decided to help guide others through the process by becoming a hospice worker in late 2004.

Kaldhusdal, 49, was called to the project in 2007 shortly after leaving the White House, where he was honored as Wisconsin State Teacher of the Year by President George W. Bush. When he called his brother, Pete, to share the experience, silence greeted him on other end of the line.

“I knew this was a big day for you,” Pete said, “so I didn’t want to say anything, but about three weeks ago, I was diagnosed with pancreatic cancer.”

Peter John Kaldhusdal died on June 29, 2009, after a two-year struggle with the disease. “Within a matter of minutes, it was both the best and worst day of my life,” Kaldhusdal recalled.

In the past year and a half, Kaldhusdal and Bernhagen have shot nearly 70 hours of film and interviewed terminally ill patients, family members, doctors, nurses, clergy, social workers and national experts from across the country. The list of experts alone is a veritable “who’s who” of people in the end-of-life care field and includes doctors Ira Byock and Elliott Fisher of Dartmouth, who both appeared in a “60 Minutes” story titled “The Cost of Dying” last fall.

“Unfortunately, what we’ve discovered is that many of our problems at end of life – physical suffering, spiritual quandary, emotional difficultly and financial bankruptcy – can be attributed to lack of communication and preparation,” Bernhagen said.

Perhaps the most important lesson learned came from a series of interviews conducted in New York City last April. People of all different ages, races, nationalities and religions and were asked one simple question: “When it is your time to die, where would you like to be and with whom?”

Nearly all of the 62 people interviewed provided the same answer: at home, surrounded by family and not in a hospital or nursing home. The sad reality, though, is that 75% of Americans currently die in a hospital or nursing home.

“As a society, we need to embrace the perspective of our pioneer ancestors and recognize that dying is a normal part of life, something as natural as birth and adolescence,” Kaldhusdal said. “And within the medical system, we need to develop programs that promote and support timely and comprehensive dialogue between patient and doctor, husband and wife, parent and child, minister and parishioner. Doing so will help ensure that people get the end-of-life care they actually want.”

In a fee-for-service system that doesn’t pay health care professionals to talk with patients and families their about end-of-life wishes, that may be very difficult indeed.

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Consider the conversation

The documentary is expected to air on public television in early 2011 and be released on DVD shortly thereafter. A special screening will be held at the Oconomowoc Arts Center on Feb. 5. For more information about the project, go to www.ConsidertheConversation.org

Karen Lacke Carrig is president and CEO of Rainbow Hospice Care in Jefferson.