Katy Butler: Patients Can Experience A “Good” Death
Posted on Friday, June 20th, 2014 at 6:24 pm by lifemediamatters
Award-winning journalist and bestselling memoirist Katy Butler wants more Americans to plan for and experience a “good” death.
“We live in a culture that doesn’t want to talk about death at all,” Butler told the crowd of patients, medical students and activists. “We need to start getting braver and more honest about it.”
After witnessing her father’s aggressive, and often unnecessary, end of life treatments, Butler vowed to help ensure that her mother would experience a more peaceful death. At 79, her father, Jeffrey, suffered a severe stroke. As his condition worsened, doctors outfitted him with a pacemaker, a procedure Butler said artificially prolonged his slide into dementia.
She devotes a portion of her memoir to her mother’s struggle.
“On the phone with my brothers and me that winter, she cried. She loved my father. She’d vowed to be with him in sickness and in health, she told us— and who was she to think they’d escape the sickness part? He’d taken care of her for 50 years, and now it was her turn. But in ways we were only beginning to fathom, my father was no longer her husband, and she was no longer his wife,” she writes. “At 77, she had become one of 29 million unpaid, politically powerless and culturally invisible family caregivers— 9 percent of the United States population— who help take care of someone over 74.”
Her mother, Valerie, would later die in a quiet hospital room in Connecticut. She was fully conscious until the end, and she was not “plugged into machines” in the intensive care unit.
“Both my parents lived really good lives, and they hoped to die really good deaths. One of them succeeded, one of them failed,” she said. “Think about what is a good death for you. How would you like to die? Whatever the good death means to you, we all share something in common: we live in a country that doesn’t want to talk about death.”
According to Butler, advances in modern medical technologies coupled with a medical system that rewards doctors for providing more treatments have helped make death and dying taboo.
“Can you imagine the title of the bestselling book from 1451? Translated into all the European languages, the Ars Moriendi, or The Art of Dying, was a script for the death bed,” she said. “It’s full of very understandable, human illustrations … the most important person in these illustrations is the person dying, and their state of mind. Death is depicted as a very spiritual and important event.”
Today, about 20 percent of seriously ill Americans die in the intensive care unit, and 30 percent cycle through it in the last month of life.
“The problem did not start three days before the family showed up in the intensive care unit. The problem started five to 10 years before,” she added. “We’ve got to start talking about this in a much more subtle, nuanced way much earlier.”
Sheryl Brown, a clinical coordinator for the intensive care unit with Northshore University HealthSystem in Evanston, Ill., said she was inspired by Butler’s presentation.
“I think that she brings that personal experience that has so much weight. When people talk academically about matters of death and dying, it doesn’t touch the human soul,” she said. “A sense of passion about this will move us forward.”
Alyssa Foll, a chaplain with Adventist Midwest Health, said she believes conversations about end of life-related issues are taboo. “Like the Victorians in England avoided sex, we avoid end of life conversations,” she said. “I think we live in a youth-obsessed culture, but we also rely on technology. People think technology will save them and prolong their lives, but it won’t.”
Award-Winning Author Katy Butler Coming To Chicago
Posted on Thursday, June 12th, 2014 at 1:01 pm by lifemediamatters
In collaboration with the Chicago End-of-Life Care Coalition, Life Matters Media will host award-winning journalist and author Katy Butler at Loyola University in Chicago on June 19. Butler will offer reflections on her best-selling memoir Knocking On Heaven’s Door, a personal examination of how medical technology is often used in ways that cause unnecessary suffering at the end of life for millions of Americans.
Butler spoke with LMM about her inspirations and experiences behind the book’s creation.
Are you surprised by the book’s success?
What most surprised me is the positive response from within American medicine, because the book really is a sharp critique of where we have drifted to with end of life practices in our medical system.
I didn’t expect to be invited to give grand rounds, and it has been a really amazing experience. I have also noticed a growing counter-culture in medicine– particularly from the palliative care doctors, hospice providers and primary care physicians– people who really want to see a change.
People know that something is wrong and see the suffering, or they have a family member that goes through this experience and realize that even though they are doctors and nurses, they still can’t navigate the system.
Do you ever receive letters from readers?
Sometimes two or three letters a day. I feel validated, and it makes it clear to me that what I am saying is becoming kind-of mainstream. Many, many letters from people facing an ill-advised late-life operation.
I have also noticed more stories of “blue skying” in letters. That’s when doctors tell you about a treatment’s advantages, and how it could work out really well- but they never talk about risks.
What does “good” end of life care look like to you?
To me, I think the ideal for most people is still the ideal of the Victorian age: you die at home, surrounded by friends and family, with pain controlled and with meaningful interactions with loved ones to help leave them better off.
That is not what we see in the U.S. Instead, one-fifth die in intensive care, and 30 percent cycle though intensive care in the last month of life. That leaves families traumatized.
What I have come to realize since I finished the book is that I do not think of good end of life care as being separate from good medical care for the aging. Instead, good end of life care should be a continuum- a shift from thinking of medicine’s most important role as maximizing longevity or curing people.
What would you say to a doctor who maintains that he or she has the responsibility to prolong life at all costs?
If you only believe in making your patient survive as long as possible, there will be a time when you feel like a failure. Every patient will die. But you can widen the lens and realize that you can always do something to relieve suffering and support the patient’s family.
Are you excited to present in Chicago?
This will be the first time I will be presenting to an end of life coalition, people who are really up on these issues- more so than other medical professionals. I want to devote some time to language. The end of life improvement movement needs a lot of help with language, because a lot of the language of medicine is still full of euphemism.
For example, “goals of care” is a term within medicine to describe the shift from all-out “let’s save their lives” to “let’s minimize suffering.” But to a lay person, what the hell does “goals of care” even mean? The word “care” is completely overused.
‘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.
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