How do you want to die? A mission to make death part of popular conversation

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PBS News Hour– A growing national movement to normalize end-of-life discussions among family and friends has gained traction in recent months. As Medicare considers whether to cover such conversations with physicians, The Conversation Project, a Boston-based non-profit, is highlighting the importance of talking openly about dying. Special Correspondent Lynn Sherr reports.

Watch the segment here.

Harkness on the West Coast: The Conversation

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During my year so far, I have been struck by the advanced discourse here in the US about compassionate deaths. In the US, there is a major initiative to have “the conversation.” This is a discussion with family members before it is too late, to discuss your wishes and help ensure everyone understands your wishes. I have personally experienced the “end” with both of my grandmothers; one went out exactly as she wished, one suffered more than any member of my family could cope with. I have often wondered how it may have been different had we spoken earlier, as a family, about the plan for the end.

My Nian died of advanced dementia after a long hospital stay. It was clear once she was admitted that she would never be discharged home. I think her final hospital admission was 25 days. During that time she was trying to “escape” nearly every day. Some days she would make it to the garden, other days she made it further afield; one day she managed to hitchhike all the way home. Her behaviour was viewed as aggressive, violent, and she was a flight risk so her drugs become more and more potent. When her physical body finally gave up, relief was the only sentiment I felt. Her suffering, anxiety, fear and confusion were finally over.

Read the full blog post here.

Glen Campbell Family Feud: Dementia Divides Many Clans

Posted on Thee feud that’s split Glen Campbell’s loved ones amid his decline from Alzheimer’s disease strikes a chord with other U.S. families as dementia diagnoses fuel similar money spats and jealousies, leaving lasting wounds, experts say.

Last week, two of the Rhinestone Cowboy’s eight children from a previous marriage took legal action against his fourth wife, Kim Campbell. They assert she has “secluded” the singer and prevented them from “participating” in the 78-year-old’s medical care.

A rift also arose inside the family of radio legend Casey Kasem. Last year, his children fought his wife and their daughter to take control of Kasem’s medical decisions while he was in the throes of dementia, before his June death.

“What you are seeing in the news about Casey Kasem and, now, Glen Campbell is a problem with many families,” said Diane Carbo, a nurse who works with the elderly.

“Nothing brings out the greed and conflict more than aging parents in need of care,” says Carbo, who founded Caregiver Relief. “In the present deflated economy, there are more and more clashes over parents’ finances. If these siblings do not agree on what is necessary, things get very ugly.”

Read the full piece here.

From California to Colorado, Kentucky to Boston

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The Nation Resolves to Talk About Death in the New Year during Dinner Series

Death as dinner conversation? You bet. For a second consecutive year The Conversation Project teamed up with Death Over Dinner to launch a nationwide movement to encourage Americans to throw the most important dinner parties they’ll ever have.

Both organizations believe that conversations about end-of-life care shouldn’t start with doctors, insurance agents, or within intensive care units when people are facing life-threatening situations; they should start with family and friends while breaking bread.

The challenge was accepted, and during the week of Jan. 1 to 7 more than 1,000 dinners were held throughout the US, and the campaign drove more than 23,000 people to the organizations’ websites where they registered to host dinners and downloaded The Conversation Project’s Starter Kit.

Still haven’t hosted your own dinner? Here’s some food for thought and an inside peek into four dinners that took place across the country so you can see for yourself the intimacy, humor, and down-to-earth reality that occurs when friends and family, and in some instances complete strangers, get together to discuss their own deaths.

Cooking Up a Conversation in California

The Conversation Project’s West Coast partner and advisor, Ira Byock, MD, chief medical officer of the Providence Institute for Human Caring, and his wife Yvonne Corbeil opened their home in Los Angeles to a diverse group of dinner guests to discuss what no one wants to talk about – planning for our dying days.

In true Hollywood fashion, the couple’s star-studded guest list included Academy Award-winning director and Emmy Award-winning actress Christine Lahti (“Chicago Hope,” “Law and Order: Special Victims Unit”); director/producer Thomas Schlamme (“The West  Wing,” “Manhattan”); the entertainer, author and motivational speaker Tom Sullivan; and Bob Beitcher, president and CEO of the Motion Picture & Television Fund.

Lahti and Schlamme, who are married to each other, said they have both experienced the death of one or both parents. “We all know that death is as inevitable as birth,” said Lahti. “But death is never talked about and is such an elephant in the room. There is such denial about it.”

Lahti and Schlamme said they chose to participate in Death over Dinner because they want to be part of building a grassroots movement to stimulate conversations about death. “Eventually, that’s the way culture changes,” Schlamme said. “It changes when a group of people decide to talk about death and say that it’s not as frightening as we thought.”

Dr. Byock said it was a delicious evening in all respects. The dinner was catered by Chez Mélange in Redondo Beach, which is co-owned by Michael Franks, a supporter of the Death over Dinner movement. Death “is something no one really wants to discuss,” Franks noted. “But I think it’s very interesting to be able to sit down at a table and discuss in a relevant way.”

The dinner table discussion was personal and enjoyable. “We shared perspectives and stories from our lives as sons and daughters, spouses and parents,” said Dr. Byock. “Some moments were deadly serious, others touchingly funny. Oh, and the food was great!”

Dr. Byock, who is author of “The Best Care Possible,” urges individuals to complete advance directives, documents that spell out the specifics of the kind of medical care they want when they are dying. The directive allows people to express their wishes so that their preferences for care will be known and honored.

Boulder Gets Bold about End-of-life Care

Boulder resident Connie Holden, RN, MSN, the leader of Boulder’s Conversation Project chapter, set her table to dine and discuss death for a party of ten. The attendees were personal friends from a broad range of professions, backgrounds, and interests.

Holden’s personal experience with parents and grandparents, as well as a four-decade-long career as a bedside nurse, is what gives her an appreciation for the complexities of end-of-life decision-making. Holden recently retired from Boulder Community Hospital   where she served as the Executive Director of Hospice of Boulder County, and she now works to spread The Conversation Project’s mission widely throughout Boulder.

Holden said that, while living wills are helpful, those she worked with often found it easier to make difficult decisions if they had also talked with their loved ones about their wishes.

She gave the example of a man who struggled with a decision not to provide his elderly mother with a feeding tube after a stroke. Though her living will specified no feeding tubes, she said, he kept saying he wished he had heard her say it.

“Maybe all of this is not about the documents we fill out,” she said. “It’s about the conversations we have with our family members.”

Guests discussed the gray areas that may not be covered by a living will, using personal experiences as an example. Guest Kathy Harberg talked about her father, who at the age of 95 had dementia and came down with pneumonia. Though he had a “do not resuscitate” order, she said, she and her siblings still needed to decide whether he should receive antibiotics.

For more on Boulder’s Death Dinner including guest’s reactions, read the full story and watch the video featured in the Daily Camera.

Dining and Discussing Death in Kentucky

Meanwhile, a few states over in Kentucky, instead of quips about the weather or current events, dinner conversation between 15 complete strangers in a local restaurant started with “So, have you had any experiences with death?”

Kentucky’s Death Over Dinner event was hosted by Justin Magnuson, a 38-year-old massage therapist from Germantown. Magunson became interested in end-of-life care and the work of national nonprofit, The Conversation Project, after serving as his grandmother’s health surrogate and volunteering for a local hospice organization. This emphasized for him the importance of end-of-life conversations and the difficulty many people have with discussing their own death. He hosted the event to help spread The Conversation Project’s work and engage various sectors of the community ultimately improving both the participants’ lives and the healthcare system.

The event definitely reached one dinner guest and chaplain the Rev. Georgine Buckwalter, who  commented on the importance of having these conversations early and often rather than in “the 11th hour, in the hallway at Baptist (Hospital) East,” as she put it. “Discussions about death, especially with loved ones, are a delicate dance,” Buckwalter said during the dinner.

Guests were old and young, in varied lines of work — among them, university faculty, clergy, psychologists and a puppeteer — but all were “stakeholders” in the topic of death who could bring the conversation to other people, Magnuson said.

“Overall the feedback from the dinner guests was very positive,” said Magnuson. “I’ve already been contacted about participating in another dinner and presenting The Conversation Project at a local congregation.”

For more details about Kentucky’s event, read the coverage featured in the Courier-Journal.

Breaking Bread and Taboos in Boston

Wrapping up the week of dinners, The Conversation Project’s own Ellen Goodman was joined by Dr. Atul Gawande, surgeon, author of Being Mortal; public health researcher Nancy Frates, mother of the inspiration behind the Ice Bucket Challenge; Maureen Bisognano, president and CEO at the Institute of Healthcare Improvement; Paul Grogan, president and CEO of the Boston Foundation; Dr. Lachlan Forrow, Director of care and Ethics and Palliative Care Programs and Beth Israel Hospital; and many others, at Rialto restaurant in Boston.

The evening began with each dinner guest lighting a candle as they said the name of a departed loved one and sharing a story or character trait that they still carry in their hearts. One guest introduced her grandfather, Michael, who was an Italian immigrant. “I am inspired by his courage–to leave behind everything he knew for the sake of a better future for his family,” said Rosemary Lloyd, director of faith based initiatives at The Conversation Project. Others talked about qualities like honesty and generosity, leadership and kindness, leading Nancy Frates to note that we aren’t just taking about death, we are talking about life and what makes it worth living.

The conversation and wine flowed alongside Rialto Chef Jody Adams’ cream-of-mushroom soup a recipe donated to the nonprofit’s recent project and ecookbook, The Endless Table. The ecookbook is a collection of recipes and stories from the country’s leading chefs remembering loved one’s lost to help inspire families to have “THE” conversation about end-of-life care.

The mushroom soup honors Adams’ father. Toward the end of his life, although his appetite had waned, he still loved food, so the chef did what she knows best, and turned to the stove. She cooked her heart out, ferrying bowls of soup from her parents’ kitchen to the living room where his bed was arranged. The mushroom soup was his favorite.

This touching story among many others was shared around the table. Goodman created The Conversation Project after having been her mother’s caregiver and health care decision-maker for several years.  If Goodman had conversations with her mother before dementia impaired her ability to share her desires, she might have felt more comforted about the choices she faced, she says.

Goodman knows her story is not unique. The goal of The Conversation Project is to help loved ones die in the way they would choose, honoring their wishes in death the same way we do in life – with dignity, respect, and deep compassion.

Ellen Goodman and Dr. Atul Gawande teamed up before the dinner to speak on WBUR’s Radio Boston to express the importance of having this conversation with your loved ones.

Let’s have dinner and talk about death

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The Baltimore Sun-  It isn’t what she imagined for what Baby Boomers like to call “a post-career career.” But Pulitzer Prize-winning columnist Ellen Goodman finds herself talking to people about dying. Specifically, about dying the way they want to die.

She began The Conversation Project after her own mother’s death at 92. They had never had this conversation and, with her mother suffering from dementia, they couldn’t have it. She found herself making difficult decisions about her mother’s care without any idea what her mother might have wanted.

“We had talked about everything but this one thing,” said Ms. Goodman, “and that is how she wanted to live at the end of her life.

“I never want to leave the people I love that uneasy and bewildered about my own wishes,” said the former Boston Globe writer.

From today through Jan. 7, The Conversation Project, in cooperation with Death Over Dinner, which also encourages these conversations, is urging people to pick an evening soon to “fill their tables with comfort food, family and friends and start talking about how they want to live the last days of their lives.”

Read the full article here.