‘Consider The Conversation’ Directors Speak With LMM
Posted on Monday, August 26th, 2013 at 1:58 pm by lifemediamatters
As Consider the Conversation: A Documentary About Unintended Consequences nears completion, directors Terry Kaldhusdal and Michael Bernhagen spoke to Life Matters Media about their inspirations and the challenges they face funding their project- the second in a series of documentaries exploring end of life care. Their first documentary, Consider the Conversation: A Documentary On A Taboo Subject, was released in 2011 to critical acclaim, and it has since aired more than 400 times across the U.S. via Public Broadcasting Stations.
Why Are Discussions About End Of Life So Difficult?
Bernhagen: Doctors are really good at curing people, but they are not good at preparing people for death. It is really a function of American medicine’s success
in fighting disease and extending life. In the last 50 years, the average life expectancy has risen by seven years- but that does not mean quality of life has been enhanced, too. Where and when we die has also fundamentally changed. Today, 75-80 percent of us can expect to die in a hospital or nursing home- while 100 years ago, we died at home surrounded family and friends. This has created a void in our culture, or unintended consequences.
Sarah Palin’s ‘death panel’ reference actually helped awaken dialogue about end of life care. We are now aware that we do not know how to do dying well– she gave our culture a great gift, because a lot of people started to look into her words. The focal point of this film is looking at the doctor-patient relationship.
Will This Be A Trilogy?
Kaldhusdal: We already have plans for at least three, maybe four films. This latest film has a laser focus on doctors and patients– we look to our doctors as our cheerleaders, but what about end of life discussions? The third one will be on clergy. Many clergy have told us ‘we’re not trained to answer these questions’ and ‘our training is not for the last chapter of life.’ We have a group of people who are willing to speak with us about this dynamic. We want to inspire physicians and clergy, because they are closest to the problem– they have civic, social and moral responsibilities. We need to help them to help us.
How Are Your Films Funded?
Bernhagen: We’re not Spielberg, and we’re not Ken Burns. We are O for 22 with grants we applied for. We have been using donations from individuals across the U.S. We also have been supported by the Chicago End-of-Life Care Coalition. Some buy our DVD on Amazon, which is an additional source of income. We donate the broadcast rights to PBS– shown more than 400 times in 31 states. We are also fiscally sponsored by the Rainbow Hospice Foundation. People can donate at considertheconversation.org. We’ve raised about $30,000 for this film, which is good. Our greatest fear is that these films won’t be seen by enough people.
What Do You Want Viewers To Take Away From Your Films?
Bernhagen: We hope everyone- including doctors, patients and clergy- start initiating end of life conversations. Our work is strictly intended to inspire people.
Death With Chocolate
Posted on Monday, August 5th, 2013 at 12:54 pm by lifemediamatters
My friends and I are at the age at which sickness and death face us every day. They appear in the mirror when we see our mothers and fathers reflected back. They show up in the news as more of the celebrities whose deaths make the front page are of our generation, not that of our parents.We feel the loss, we feel the fear, and we ask ourselves: “Who will go next? When will I die?”
News of someone we know– or know– of being diagnosed with an eventually fatal disease comes with regularity. He’s got ALS; she’s got stage four cancer spread to where it cannot be stopped. He got Parkinson’s, she got a stent, he’s on insulin and she’s got a colostomy. The list grows longer and longer, the tide gets closer and closer to me.
The conversation started the other day when a friend came to visit. Somehow, the talk got around to someone newly diagnosed with one of the big scary diseases; at least it’s one of my big scary ones.
“If I got that I would kill myself,” she said.
I replied, “No you wouldn’t.”
“Yes, I would,” she repeated with even more conviction.
“How?” I asked, really curious.
Her quick response was, “Pills.”
“You won’t be able to. By the time you are ready to die, you won’t be able to do it yourself,” I reminded her.
She thought a minute, and then said softly: “Everyone’s talking about this. What to do when the end gets hard. I want pills. What about you?”
Taking a deep breath, I admitted that I think about it, too. I’ve seen so many people die in so many different settings that I have some idea about how I would handle one of the Big Scary Ones.
“I’ve thought of walking into the lake, but I definitely don’t want to die cold and wet. I’m afraid of heights, so I’ll never jump. I feel sick driving fast, so it won’t be a highspeed crash into a wall. Nothing violent at home, I couldn’t put someone through the trauma of finding me. As for pills, I’d probably wait until I couldn’t eat so many.”
She squirmed, “You have thought about this.”
“Oh, yeah,” I replied. “I’ve seen enough people die to know how I want to die: sick for a month, old and happy, no pain, in my own bed, surrounded by people who love me, getting massaged, listening to soft classical music, seeing the sky and trees out my window, and with chocolate ice cream in my mouth.”
She laughed. I poured more tea.
“One thing for sure, talking about it—even like this—makes it real and that gives me time to accept death and prepare for it,” I said. “What I know for sure is that I need to have a designated proxy to speak for me in the hospital if I can’t speak for myself, and I need to put it in writing in a Power of Attorney for Healthcare.”
“We did ours last year with our estate plan,” she bubbled.
“Who’d you choose?” I asked.
“My husband,” she smiled. “But I know it’ll be hard for him to pull the plug.”
I cringed, “That’s a terrible expression. It makes withdrawing life support sound simple. Pull a plug. It’s horrible to have to decide to leave someone on a machine living dead, or take them off a machine to get dead. We’d be so much better off if we never got plugged in.”
I could see she was getting uncomfortable so I added, “Hospice is the key, but so many people wait until it’s too late to get the benefit. We use hospice as a last resort when it’s a last reward. The best ends I’ve seen happened for those who had hospice at home for weeks or months not only days before they died. If you can’t die at home, a hospice unit is like being in a fancy hotel suite with five star service.”
She let me go on.
“Hospice patients can get good pain management, and the family and caregivers have phone support 24/7. Dying is hard, and it can be messy and offensive. None of us gets any practice dancing with death. We need to lean on specialists, and those hospice people are special.”
She sipped her tea, smiling, and then said, “You’re right. I’d rather die naturally and surrounded by people who love me than alone with a cocktail of drugs for a finale. I’m glad we talked about this. I actually feel better.”
“That’s exactly the point of talking about death—to appreciate life!” We tapped our cups and shouted, “L’chaim!” We hugged tightly, and then went on to the next topic: desserts.
Chicago ‘Death Cafe’ Draws Curious, Diverse Crowd
Posted on Tuesday, July 16th, 2013 at 8:45 am by lifemediamatters
Downtown Evanston’s Curt’s Cafe became a hot spot for end of life discussions
A Chicago-area “Death Cafe” brought dozens of strangers together for an evening of frank talk about dying– along with plenty of coffee and cookies. Death Cafe, a growing movement that started in Switzerland, is one that is spreading quickly throughout the U.S. and was the first event of its kind Tuesday in Evanston, IL.
“I’m amazed that so many came, they have something they want to talk about,” said Viki Noe, who co-organized the event. Noe said she understands how some could find such discussions disturbing. She first learned of Death Cafe on Twitter while researching hospice care. “I was like, ‘What the hell is that?’ ”
Considering where, when and how attendees want to die was the focus of the discussion; and most concluded that they want to die slowly, at home and with family. “I hope I die from an illness that allows me closure and time to say goodbye to people,” said social worker Julie Lamberti, 64, who attended her first Death Cafe. “I’ve noticed there is not an openness in our society about death.”
Most in attendance agreed that “good deaths” are not ones that happen in hospitals. “I want to die in my sleep, peacefully, and I want time to say goodbye to the people I care about,” said 58-year-old Arlene Wanetick, a member of Chicago’s End-of-Life Care Coalition. “In America, we all think we’re going to live forever. We have become a youth-obsessed society.”
These talks could encourage more advance care planning, since less than 25 percent of patients die at home. While Death Cafe is not intended as therapy, said organizer Dan Bulf, it is meant for deep discussion about how participants want to live and how they feel about death. “For the next two hours you’re all right,” Bulf said. He urged attendees to suspend their judgements and to accept other beliefs.
“I was like, ‘What the hell is that?’ “
By the end of the two-hour event, many attendees were conversing like old friends and smiling. Some offered others rides home. “I needed this,” one woman exclaimed.
The Death Cafe website states the goal of these cafes: “To increase awareness of death with a view to helping people make the most of their (finite) lives.”
Other recent cafes have formed in New Mexico, Michigan and Maine. An all-male cafe was held last year in Chicago. Noe said she is inspired to organize more in the coming months.
Similarly, Elements, a Chicago-based cremation company, will be hosting cafes in the fall. “We realized the importance of opening up the conversation, and how simple conversations about our own demise are needed in our community,” Ronette Leal McCarthy, Elements’ legal counselor, told LMM.
As Americans Live longer, Organ Donations Suffer
Posted on Friday, March 22nd, 2013 at 2:53 pm by Life Matters Media
As Americans are living longer than ever, many elderly would-be organ donors are unable to donate upon their death, according to analysis from executives of Gift of Hope, an organ donation organization in Illinois.
As Gift of Hope does not accept organs from those older than 85, with certain cancers, HIV or hepatitis B, many in need of multiple organs are struggling to get them. Although the number of living donors has remained steady over time, the number of donors actually able to donate is shrinking. Therefore, an average 65-year-old in need of a liver and kidney waits much longer for those organs.
“What we’re seeing is more people becoming sicker and getting less health care,” Eric Price, a donation specialist with Gift of Hope told LMM. “Because there is a static number of people donating, there are less organs coming from them.” Price also noted an increase in diabetes and cancer in would-be donors.
The biggest obstacle donation specialists face is finding the best time to request organs from grieving families. Specialists typically make this inquiry in the delicate moments before or after a potential donor’s death.
“There is no good time to ask this question,” Price said. “Families don’t want us coming to them in the hospital asking for their loved one’s organs.” But hospitals have an obligation to notify Gift of Hope of every pending death within a facility, or the institution risks losing Medicare reimbursements. If the individual on the verge of death meets the specifications of Gift of Hope, a donation specialist heads to the hospital immediately.
Sometimes, families are reluctant to donate because they hold out hope for a recovery, Price said. Poor doctor-family communication is another reason why more are not organ donors. “So many doctors do a horrible job of explaining death to families in general, but especially brain death,” Price explained. “I’ve been yelled at and even swung at once when speaking to a family about donating their loved one’s organs.”
A sense of urgency pervades organizations like Gift of Hope. There exists a small time period in which vital organs can be harvested, because they require oxygen and nutrients to survive. It is also difficult to find donors, as only two percent of deaths are eligible for donation. An eligible donor must have died a “brain death” within a hospital (like from a stroke) or the patient’s family has decided to withdraw life-saving support.
Deaths in hospice facilities or at home do not qualify, because organs cannot be harvested if not ventilated properly.
Meanwhile, the transplant waiting list keeps growing. A patient awaiting a kidney transplant in Illinois typically receives one after about five years. There are more than 5,000 people waiting for organs in Illinois. Nationally, that number is more than 100,000.
Gift of Hope executives acknowledge the emotional nature of their work and urge families to think of the positives of organ donation.
“After a family donates, we keep in touch with them,” said Karen Cameron, the Clinical Training Coordinator at Gift of Hope. They connect willing organ recipients and the donor’s family “to help show them the impact of their gift.”
More than five million people have signed up to be donors in Illinois, and more than 70 percent of those whom Gift of Hope approach agree to donation.
‘Consider the Conversation’: A Discussion At Fourth Presbyterian Church
Posted on Thursday, January 24th, 2013 at 6:56 am by Life Matters Media
The acclaimed “Consider the Conversation: A Documentary on a Taboo Subject” was screened at Fourth Presbyterian Church in Chicago on Wednesday, in collaboration with the Chicago End-of-Life Care Coalition.
Directed by longtime friends Terry Kaldhusdal, a fourth grade teacher and filmmaker, and Michael Bernhagen, a hospice advocate, the film showcases interviews with health care professionals, religious leaders and the terminally ill in order to explain the importance of having the freedom to choose one’s end of life preferences. It also highlights the moral dilemmas surrounding the hastening of death, such as stopping eating and drinking, for those suffering and the artificial prolonging of life.
Loretta Downs, the CECC president, thanked the audience for being brave enough to watch such an emotionally evocative film. “Now we are living for years with chronic illnesses that before would have killed us. We think that we will never die, but we are required to talk about end of life,” said Downs, who is also featured in the documentary. “The film has inspired many people to have these conversations.”
The audience seemed to enjoy the film and engaged in a lively conversation afterwards. “I thought it was excellent, said Susan Thompson, 75. “It emphasized being natural in the most difficult moments of death and life.”
Laura Pond, 54, said she did not like the film’s stance on hastened death. “I found it difficult to watch because I have a chronic illness and I thought people in the film were giving up,” she said. “You do not give up. It is not God’s plan.”
Marty Preiss, 60, said she found the film both compelling and engaging. She is planning a similar event for a screening at her church in Chicago’s northern suburbs.
The film has also been well received by health care professionals. “I have never recommended a film on the end of life before. But people deserve to see “Consider the Conversation” because it deepens our passion for life and enriches our lives,” wrote Compassion and Choices’ Barbara Coombs Lee.
“Consider the Conversation” has won multiple awards, including the Award of Excellence in End-of-Life Care from Agrace HospiceCare and the Silver Award of Excellence: Best Documentary or News Special from the Milwaukee Press Club.
Part two: “Consider the Conversation: A Documentary About Unintended Consequences” will be released early next year.
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