From the CTC Archives: Viewing end-of-life care
The following article, written by Guy Boulton, originally appeared in the Milwaukee Journal Sentinel on February 28, 2011.
While on a camping trip with their children in 2005, Terry Kaldhusdal, a teacher and fledgling filmmaker, mentioned to his friend Michael Bernhagen that someday he’d like to make a documentary about hospice care.
Bernhagen, who had begun working for a hospice, had just described his mother’s death a few years earlier. Still, Bernhagen admits he was skeptical of his friend’s idea, thinking it was just the beer talking.
Two years later, when Kaldhusdal’s brother, Peter, was diagnosed with pancreatic cancer, the potential project would become a priority, and much more personal.
The result is “Consider the Conversation,” a recently completed documentary on end-of-life care.
“Everyone in the film talks about the cultural issue we have dealing with how we live at end of life,” Kaldhusdal said. “We treat it as a failure.”
“When we die today, it’s considered unnatural,” added Kaldhusdal, a fourth-grade teacher in Genesee Depot. “There’s nothing natural today about dying a natural death.”
Billed as “a documentary on a taboo subject,” the film includes interviews with patients, family members, doctor, nurses, clergy and national experts on how our health care system cares for terminally ill patients.
The two filmmakers hope that it will encourage people to have the painful and difficult conversations about their medical care and the measures they want taken at the end of their lives.
“You never lose hope,” Kaldhusdal said. But, he added, “Hope is not a plan.”
Having a plan means asking what it means to live well. It also means having an advance directive – a legal document that states a patient’s wishes on end-of-life care – and knowing that hospice is an option if terminally ill.
“You want to introduce these concepts to the patient before they are terminally ill, early in the trajectory of the disease,” said Bernhagen, director of community engagement for Rainbow Hospice Care in Jefferson. “That’s not happening now.
“With something like hospice, it is brought up when they are at the edge of the falls.”
Few people, for example, know that hospice is a philosophy, not a place.
“Many physicians are the product of a medical culture and medical educational system that sees death as a failure,” Bernhagen said.
That’s slowly changing. Last month, the American Society of Clinical Oncology issued a new policy statement that recommends physicians initiate candid discussions about palliative care and treatment options soon after a patient has been diagnosed with advanced cancer.
Yet every doctor who agreed to talk to them, Kaldhusdal said, did so because they said doctors need to hear this story.
“Doctors are really good at curing people,” he said, “but they are not very good at treating people who can’t be cured.”
A report released in November by the Dartmouth Atlas Project, which has used Medicare data to study the variation in medical care in the United States for more than 20 years, found that only slightly more than half of all patients with advanced cancer receive hospice care.
The study also showed significant variation among hospitals in the percentage of patients given life-sustaining treatments, such as being put on a ventilator, being given a feeding tube and receiving chemotherapy during the last two weeks of life.
Elliott Fisher, a physician and one of the key figures in the Dartmouth Atlas Project, was among those interviewed for “Consider the Conversation.”
The documentary was shown in Oconomowoc last month as part of an initiative by ProHealth Care to encourage people to have advance directives. The initiative is being led by Ford Titus, ProHealth’s former chief executive.
PBS stations in Minnesota, Wisconsin and Chicago plan to show the documentary, and Kaldhusdal and Bernhagen hope others throughout the country will follow. They also hope the film will be shown in hospitals, medical schools, nursing schools, hospices and churches.
The two estimated that they put more than 3,500 hours into the film, and both noted that their wives carried much of the load while they worked on it.
“It’s been like working two jobs for the past year,” Bernhagen said.
The documentary was financed almost entirely by small donations that totaled about $43,000. Bernhagen and Kaldhusdal applied to about 20 foundations for grants and struck out every time. They suspect the political firestorm about “death panels” during the debate on health care reform may be the reason.
In all, the two estimate that they ended up about $10,000 in the hole, not including accounting of their time.
Kaldhusdal took the lead on the editing. Bernhagen handled the logistics, such as arranging the interviews. And each brought different skills to the project.
Bernhagen had worked in business development for Aurora Health Care and the Medical College of Wisconsin before going to work for hospices, and understood the health care system.
Kaldhusdal, a former reporter who teaches at Magee Elementary, got interested in filmmaking after the principal at his school bought digital equipment and made clear that he expected the teachers to use it. Kaldhusdal did more than that. He began making documentaries.
He also was named Wisconsin’s Teacher of the Year in 2007. He learned his brother had pancreatic cancer on the same day he was among the teachers honored at a ceremony at the White House. Shortly after, he called Bernhagen about doing a film together on end-of-life care.
Twenty years ago, before the advances in the technology, particularly editing software, making the film would have been impossible, Kaldhusdal said.
“Now, some fourth-grade teacher on Pine Street in Oconomowoc can create what I think is a pretty powerful film on a very difficult subject,” Kaldhusdal said.
Yet, the two filmmakers stressed, the film is not about dying.
“It’s about how people want to live before they die,” Kaldhusdal said.