Death is universal, but so is the seeming reluctance to talk about it – but why?
Two local filmmakers set out to explain Americans’ difficulty discussing the dying process and preparing for life's end.
Michael Bernhagen and Terry Kaldusdal interviewed more than 100 experts and regular folks from around the country. The result was the 2011 documentary “Consider the Conversation.”
The award-winning film has aired hundreds of times on PBS stations across the country, and is now out on DVD. And you can catch it at a screening next week, sponsored by Horizon Home Care and Hospice.
"This film is an intimate story about the American struggle with communication and preparation for end of life," says co-producer Bernhagen, who is also Director of Community Engagement with Rainbow Hospice Care in Jefferson, Wis.
The right questions
Bernhagen and partner Terry Kaldhusdal interviewed more than 100 doctors, caregivers, experts and people at the end of their lives for "Consider the Conversation." The goal was not to provide an answer and advocate for a particular solution, and certainly it isn't a film about physician assisted suicide. Rather, the aim was to help viewers ask the right questions and make informed decisions for themselves at the end of their lives.
"When it's your time to die, where would you like to be and with whom?" Bernhagen says. "What kind of care would you want? Why is hope not the same as having a plan? What does quality of life mean to you? What matters most to you at the end of life, how would you like to live at the end of your life?"
Ultimately, it's up to each individual to decide what makes for a "good death," says Kelly Andrew, director of development for the Milwaukee area's Horizon Home Care and Hospice. She says it's a fundamental right to determine how we want to be cared for at the end of life - one that she thinks the aging Baby Boomer population will exercise.
"People are not necessarily satisfied with the way we've always done things," she says. "People want change and now's the time to talk about what the ideal end of life experience is, and that's different for everyone.
"When it's your time to die, where would you like to be and with whom? What kind of care would you want? How would you like to live at the end of your life?" -filmmaker Michael Bernhagen
Dying has changed
Bernhagen says the attitude around talking about death needs to change because the way we die today has changed. In the past, people usually died at home and from sudden events like heart attacks, strokes and accidents.
"Today 75 percent of us can expect to die in a hospital or...nursing facility," he says. "Today most of us can expect to die slowly and incrementally from one or more severe chronic diseases."
American medicine's success in fighting diseases and extending life hasn't necessarily meant an increase in quality of life. Bernhagen says our cure-based medical system can sometimes prolong suffering at the end of life, rather than addressing the patient's real, but often unspoken desires.
"At its core what it's really all about is preventing unnecessary suffering at end of life," he says.
Andrew says many people don't often know what their options are as they approach the end of their lives - and often don't think about it until they are moving into the hospice where she works.
"It's interesting that more people don't have this conversation before that crisis begins," she says. "I think (the film) is having a wonderful impact on people at least being open to hearing about what's available to them and how they can prepare for a time that's going to be very difficult no matter what the circumstances for them and probably for their family and loved ones."
Planning ahead
That's why Bernhagen says advanced care planning is so important. He says people need to decide how they want to live at the end of their lives and document those wishes to direct the desired kind of care when the time comes.
"The film has to inspire the general public to think and talk and act upon these wishes," he says. "It has to inspire medical system to create an environment where these conversations are normal, operationalized, and they thrive."
Bernhagen and Kaldhusdal's wish may be coming true. Inspired by the documentary, the Wisconsin Medical Society launched a project called "Honoring Choices Wisconsin." Bernhagen says this physician-led initiative will make facilitated conversations about end-of-life wishes a standard part of patient care in the state. Starting when they turn 55 or are diagnosed with a serious illness, participating patients will be referred to a certified advance care planning facilitator.
"Basically in this program, doctors will champion the importance of advance care planning with patients at a time when they're not dying when they're not in crisis," Bernhagen says. "Talking with people about their wishes at a time when they're not dying is good preventive medicine."
The project started March 1st, and is the first of three years of pilot projects involving seven integrated health care delivery systems in the state.
Culture change
While Bernhagen says this is a "significant historical event" in institutionalizing end-of-life care discussions, getting the public to be comfortable with it takes a culture change - which doesn't happen overnight.
Just a few years ago, former Alaskan Governor and vice presidential nominee Sarah Palin used the phrase "death panels" to describe similar discussions between patients and their physicians, which would have been covered under President Obama's health care reform bill.
"That called a lot of attention to this subject," Bernhagen says. "At the time it was pretty painful, but looking back in retrospect, she gave us a great gift, because it allowed us to kind of think about this issue differently and how it's presented."
Bernhagen says it's a great honor to be recognized by peers in the field of end-of-life care. He and Kaldhusdal are working currently on a second installment to the documentary series on physician-patient conversations on end-of-life care.
In the meantime, Horizon's Andrew encourages people to see the original documentary.
"Everyone that sees it that I've encountered says, 'Oh, my husband and I need to talk about this,' or 'You know, I don't quite know what I would want or what my thoughts are on this and I've got to wrestle with that a little bit,'" she says. "Anyone who sees this movie will be changed."
Horizon is sponsoring a screening of the film on October 16th at Marcus North Shore Cinema in Mequon. You can watch the trailer below.
