The Life Matters Media Newswire aims to serve as a comprehensive portal of all news related to end of life decision making and care. We aggregate stories from other media outlets in one place- here, where you can access them easily. We also strive to produce original content covering stories we feel are receiving scant attention.
We think there are a lot of well-intentioned people here. Most of them have the best of intentions, but they refuse to stop and think about the implications of the policies they are pursuing.
Hundreds of patients, ethicists and medical providers attended the World Federation Conference in downtown Chicago to voice support for physician-assisted suicide, also known as “death with dignity.” The conference, made up of 49 right-to-die organizations from around the world, also drew numerous protestors from religious and disability rights groups.
Hosted by the non-profit Final Exit Network, the event aimed to encourage grassroots organization to support “death with dignity” laws and change attitudes.
“We believe that legislation does not go far enough. We believe that it is the right of every competent adult, suffering from severe, intractable illnesses which have deprived them of quality of life, to choose to hasten their death,” said Janis Landis, vice president of Final Exit Network, in a statement to Life Matters Media.
They would dictate to me how much pain and suffering I have to endure at the end of my life. They want to limit my right to choose.
Proponents of “death with dignity” legislation say such laws increase patient freedom at the end of life, because the seriously ill can avoid suffering and die on their own terms. In Oregon, the first state to legalize physician-assisted suicide, terminally ill adults may self-administer a prescribed lethal dose of barbiturates.
But some disability advocates, medical providers and religious organizations argue physician- assisted suicide is unnecessary and endangers the most vulnerable patients. The American Medical Association, the nation’s largest organization of doctors and medical students, does not support it.
Adam Vallard, a member of Not Dead Yet – a national disability rights group opposing all forms of aid in dying legislation – said he worries doctors could pressure disabled patients to end their lives early.
“There is this movement of right-to-die advocates who are not making distinctions between allowing someone to die with dignity and steering someone to assisted suicide. We see this as a larger trend in our society to devalue lives that are costly,” Vallard said. “We think there are a lot of well-intentioned people here. Most of them have the best of intentions, but they refuse to stop and think about the implications of the policies they are pursuing.”
Other protestors held signs, wore skeleton masks and chanted. Some conference attendees said they were told to avoid them. Many reported being instructed to avoid conversation out of fear of inciting violence.
Ken Leonard, a board member of the Hemlock Society of Illinois, called the protestors “religious extremists” and misinformed.
“Most of them are there because they believe it is God telling them to do so,” Leonard said. “They would dictate to me how much pain and suffering I have to endure at the end of my life. They want to limit my right to choose.”
Kathryn Tucker, executive director of the Disability Rights Legal Center and former legal counsel to Compassion & Choices, one of the nation’s leading advocacy groups for the legalization of physician-assisted suicide, said she works to ensure disabled Americans receive the care they want at the end of life.
“Dying these days has become a long, arduous journey,” Tucker said in her presentation. “Choices will expand, aid in dying will become increasingly available, we will see more clinical practice guidelines and more evidence that the process is becoming normalized.”
Physician-assisted suicide is legal in five states: Oregon, Washington, Vermont, Montana and Hawaii.
Wine and other spirits can help comfort some seriously ill patients and their families while in care centers or hospice programs, say end of life care experts.
Wine for the dying became a trending topic after a French hospital announced new plans to open a wine bar so seriously ill patients can enjoy a medically supervised glass with their families.
Loretta Downs, past president of the Chicago End-of-Life Care Coalition and a hospice volunteer, supports the decision and said it is common for many seriously ill patients receiving hospice care to request wine and other comforts.
“What is comfort to one person is not to another. The French drink wine with meals. For me, I want to eat chocolate ice cream and nothing else in the final days of my life,” Downs told Life Matters Media. “When Cicely Saunders founded St. Christopher’s House, the first hospice, her ‘comfort cart’ contained cigarettes and whiskey.”
Instead of providing patients “a cocktail of chemical drugs” to keep them comfortable, Downs said she believes wine can be a beneficial alternative. “It is consumed socially, not medically like a pill,” she added.
Carrie Jackson, an Alzheimer’s disease advocate and writer, recalled how an unexpected bottle of sparkling wine helped her connect with her father during his final moments. After more than two years of living in a nursing home, he died from complications associated with the irreversible disease.
“I sat vigil with him in his crappy Medicaid nursing home for six days. It was right across from Trader Joe’s, and on most nights I would stop in there to take a sandwich back for myself. On one particularly difficult night, I brought back a bottle of sparkling wine to make the hours of sitting by his bed a little more bearable,” she told LMM. “When I brought it back into his room, I eyed the mouth swab sitting on the counter, and remembered that his nurse had said to keep his mouth moist. So I poured a little wine into a cup, soaked the swab, and gently glided it over my father’s lips.”
Although he was not able to respond, Jackson said she saw “a little light in his eye,” before pouring herself a glass and giving him a final toast.
The Clermont-Ferrand University Hospital Center in central France released a statement highlighting France’s “hedonistic relationship” with wine. “Why refuse those flavors at the end of life? Nothing justifies such a ban. Instead, tasting ‘medically supervised’ brightens the often difficult days,” according to the statement written in French.
However, it is unlikely that most major American medical centers will do the same, said Dr. Jayson Neagle, an assistant professor of palliative medicine at Northwestern University’s Feinberg School of Medicine in Chicago.
“Sometimes family members ask me if their loved one can have a glass of wine, and for the most part, unless there is a medical reason to avoid alcohol, I often tell them that if it’s something they’ve enjoyed throughout their life, they should continue to enjoy it,” Neagle told LMM.
However, U.S. hospitals must be careful with alcohol programs, because it can be seen as a tacit endorsement of drinking and dangerous to other patients. Neagle said Northwestern has only limited spirits available for patients seeking to use them in a religious or cultural ritual.
Inpatient centers and home hospice programs are far more likely to develop wine programs, he added. Hospice and palliative care programs primarily focus on providing comfort for patients near the end of life.
Jeff Okazaki, director of communications at Illinois-based Rainbow Hospice and Palliative Care, echoed Neagle’s concerns.
“Whenever possible we try to accommodate these requests or encourage families to keep on hand things like food or drink items that a patient has enjoyed throughout their life,” he told LMM. Rainbow does not regularly serve alcohol to patients, he added, and there are no plans to develop a wine bar.
But Okazaki remains open to the idea. “Who knows, the hospice industry in Europe is much older and more established, so in many ways they are a precursor of things to come in the U.S. We may very well one day see the same thing opening here.”
A French hospital recently announced plans to open a wine bar so seriously ill patients can enjoy a medically supervised glass with their families, a move sparking warm headlines across the world.
Dr. Virginie Guastella, head of the Clermont-Ferrand University Hospital Center in central France, said she believes terminally ill patients have the right to “enjoy themselves” at the end of life.
“A situation can be palliative for several weeks, or even several months, and it’s because life is so precious and real until the end that we decided to cultivate all that is fine and good,” Guastella told The Local, a French publication. “It’s a way of rethinking the care of others, taking into account their feelings and emotions that make them a human being.”
Starting in September, fine wines, champagne and even whisky will be served in the palliative care center. Hospital staff will be specially trained by Catherine Le Grand Sébille, a social anthropologist and researcher.
“The French maintain a hedonic relationship with food and wine, synonyms of special moments of sharing and conviviality,” the hospital said in a statement written in French. “Why refuse those flavors at the end of life? Nothing justifies such a ban. Instead, tasting ‘medically supervised’ brightens the often difficult days.”
The Genius of Marian intimately explores the devastating effects of Alzheimer’s disease on a close-knit Northeastern family. The documentary, directed by married couple Anna Fitch and Banker White, focuses on Banker’s 61-year-old mother who is struggling with early-onset Alzheimer’s disease.
The film, made of blurry home movies, one-on-one interviews and family photos, opens with a scene from their 2009 Christmas celebration. Pam White offers her family a jar of macadamia nuts, but mistakenly refers to them as “acadania nuts,” foreshadowing a sharp decline in her cognitive abilities.
Pam, a former model and social worker, often smiles and retains a sense of elegance throughout the film’s most difficult moments. In one extended scene, she is unable to remember how to put on her coat and scarf. In another, she struggles to enjoy a fishing trip at the lake, to the annoyance of her husband, Ed, who serves as her primary caregiver. Not one scene is glamorized.
We learn that in 2008, Pam decided to write a book about her mother, acclaimed painter Marian Williams Steele, who died in 2001 from complications associated with Alzheimer’s. One year into the project, Pam was diagnosed, and was never able to finish it.
“I’ve never made a personal film before. The desire to move home, because we were based in San Francisco, was initially to help my dad out and make sense of things,” Banker told Life Matters Media. “I think it became clear that it could be a very powerful thing to share with other people. The film even helped our family communicate better.”
Anna first became acquainted with Pam through the earliest video recordings. “It made me think about my relationship with my parents,” she said. “I thought this would resonate universally.”
Early in the film, Pam seems to be in denial about her diagnosis. In a tense scene recorded while driving, Banker asks if she remembers her mother’s decline. “She had Alzheimer’s, and I don’t,” she replies. “Didn’t the doctor say that you did have early-onset Alzheimer’s?” Banker asks. “Careful!” Pam says, focusing her attention on the road. She is upset because she can no longer simply take the car and drive to the grocery store.
“There are definitely things that are awkward, but in a documentary you are tasked with managing a relationship between you and your subjects and being honest with the audience,” Banker said. “Alzheimer’s is such an isolating disease, because of the stigma attached with it and the requirements it puts on caregivers.”
According to the Alzheimer’s Association, nearly six million Americans face the irreversible disease, a number expected to increase as the baby boomer generation ages. Nearly one in six women 65 and older will be diagnosed in their lifetimes.
One of the most difficult effects of Alzheimer’s on family and friends is the slowness of the decline, Banker added.
“You are constantly reminded of who this person used to be, while you’re simultaneously losing this person, so there is no space for mourning. You are kind of overwhelmed with the responsibilities of caring and redefining your relationship,” he said. “But there is also a special side, because it does give you time. Some of the most special moments with my parents have happened over the last four years.”
Anna said she believes a lack of hope and response from patients is one of most difficult parts of the disease. “You’re caring for someone who is able to give you less and less as things get more difficult, and that’s just hard,” she added. “There is also no room for hoping it will get better, that there will be a better path ahead.”
In an effort to help patients and families share their experiences, Anna and Banker said they hope to launch an interactive story sharing website in the coming weeks.
Jen Bosworth uses comedy to make others comfortable with a not-so-funny subject: death. After serving as her seriously ill mother’s primary caregiver, Bosworth incorporated her experiences into “Why Not Me…Love, Cancer and Jack White.”
She spoke with Life Matters Media about her one-woman show and her upcoming collaboration with Life Matters Media.
What is ‘Why Not Me’ about?
It’s a show about celebrating life, and it’s also about seeing the beauty and tragedy when someone approaches the end of their life. It’s about taking opportunities to talk with our loved ones about it.
I’m a comedian, and the show’s definitely not a bummer– it’s been called a triumph and hysterical. It’s a comedy about cancer, end of life, among other things.
What inspired you to write and perform this show?
I was my mom’s primary caregiver. In 2010, metastatic breast cancer came back and spread into her lungs. I made a conscious decision that I would put my life on hold to be with her and take care of her. During those 18 months, I started writing down my thoughts and feelings, even funny anecdotes we had together. After she passed away in 2011, I had a friend approach me and tell me I needed to make a show.
Three days before my mom passed away, she called me over and she said, ‘Look, I know you’re an artist and I want you to promise me that you’ll pursue that.’ It was sort of her dying wish.
How does it feel honoring your mother through your show?
It feels amazing. My mom was a Colombian immigrant, and she was really direct, assertive and funny. The law around my house growing up was that you do what mom says. I think towards the end of her life she realized I could help people through comedy.
How does the musician Jack White come into the play?
I’m not a huge music buff, I didn’t really even know who the White Stripes or Jack White was. But I began to have these vivid, reoccurring dreams about him. I don’t know how it got implanted.
Now looking back, it was sort of my escape from the hardships and tragedy of what cancer was doing to my mom. It was like a fantasy life that I created at night in my dreams to cope. You know, I’m happily married, I have a wonderful husband, but I started to have this bizarre nocturnal relationship.
I didn’t tell anyone, but now I think it’s important to share because when you go through something horrible there needs to be an escape. His music was my escape.
Once my mom passed, those Jack White dreams stopped. It could have been anybody, it could have been David Hasselhoff from Knight Rider, Paul Newman or Brad Pitt. The show really flatters Jack White, I hope he knows about it.
What inspired you to partner with LMM?
I have strong, warm and passionate feelings for Life Matters Media, and that is why I wanted to partner for the August 1 show. On the local, national and even international level, Life Matters helps get conversations about the end of life started. When I was thinking about working with nonprofits, Life Matters was one of the first organizations I thought of.
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Daniel Gaitan serves as a content producer...More