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.
Alexandra Drane regrets never asking her sister-in-law about her end of life care wishes. At 32, Rosaria “Za” Vandenberg, a devoted wife and mother, was unexpectedly diagnosed with Stage 4 brain cancer and began a journey of painful treatments and hospitalizations.
“She was diagnosed on New Year’s Eve and died seven months later,” Drane said. “One of the realizations I was only able to come to after her death, is that we did a really terrible job taking care of her, but not in the obvious ways. We were there every single night in the hospital with her throughout the entire process. But we never talked with her about what she wanted, we didn’t push back hard enough against the system. Her case was one of over-treatment.”
Drane said Za spent at least four of her last seven months in the hospital and received hospice care far too late, partly because doctors never recommended it. This month marks the 11th anniversary of her death.
“We were in a hospital that shall remain nameless but is known for delivering excellent, excellent clinical care,” Drane said. “But excellent, excellent clinical care does not go hand-in-hand with excellent human care or excellent soul care. I feel like some of the institutions across the nation that are seen to be the best are therefore by their own best intentions maybe the worst at end of life, because they feel like they’re never supposed to give up on patients.”
Drane said it was “soul wrenching” to watch her 2-year-old niece visit her once-vibrant mother lying in her hospital bed with tubes, strange noises and smells surrounding her.
“My sister-in-law was a joyful, soulful and gleeful mama,” Drane added. “Her daughter kept pulling away and pulling away from her. As a family, if you had come to us, we would have been ferocious in explaining to you how we were giving her the very best care.”
Engage With Grace
Instead of telling doctors to do everything they can for a dying patient, Drane wants families to first ask themselves what their loved one would truly want. Then, they can work to honor his or her wishes. To help patients and families make their wishes known before serious illness strikes, Drane co-founded the nonprofit Engage with Grace.
The free website offers a “one slide” of key questions patients should ask themselves: Could a loved one correctly describe how you’d like to be treated in the case of a terminal illness?; Have you completed any of the following: written a living will, appointed a health care power of attorney, or completed an advanced directive?; If there were a choice, would you prefer to die? The website also allows patients to submit their own stories of loss.
“We wanted to give people an excuse to have the conversation, the ability to say, ‘I heard about this slide, here it is,'” she explained. “Seventy percent of people want to die at home, yet only 30 percent do. We don’t usually have these conversations.”
Drane estimates the “one slide” has been viewed more than one million times. She stressed that everyone’s end of life wishes are different, and some people will choose aggressive treatments until their final day. She stresses that the most important thing is for those wishes to be honored.
Conversations about death and dying are becoming more common, Drane said, because of programs like “Death over Dinner” and the aging U.S. population.
“We are finally getting to a place, where maybe because enough folks are hitting that age and the demographics are sort-of creating a mandate that we will all have this experience and for most of us it will go bad. But baby boomers historically aren’t happy with things that are bad,” she said. “Baby boomers changed how we were born, how we have jobs, how we marry and how we have kids. I hope they will change how we die.”
She hopes to provide resources about personal finances, because so many seniors lose most of their assets in their last years of life.
“Dying well is also more cost-effective,” Drane said. “Twenty-five percent of seniors lose all their assets in the last five years of life because of advanced care. We have people who have not died in the way they would have chosen and they devastated their financial legacy.”
Author Alan Gelb wants to help millions of baby boomers plan for their futures and share their stories.
Gelb spent much of his career helping thousands of high school students write their college admission essays and prepare for their academic futures with bestselling Conquering the College Admissions Essay in 10 Steps. Now, the 65-year-old wants to help millions of his peers gather their thoughts and draft their “last says.”
“We get to a certain point in life, and as we look towards the third act, a lot of chaos looms ahead of us: illness, loss, lack of relevancy,” Gelb told Life Matters Media. “A life review exercise enables us to gain perspective on our life and really focus on what matters.”
His new book, Having the Last Say: Capturing Your Legacy in One Small Story, aims to help readers organize their memories and milestones into authentic short stories ranging between 500 to 1,000 words. Gelb said he was inspired by so-called “ethical wills” that have long been an element of the Jewish tradition.
“This concept has been adapted for non-sectarian purposes. An ethical will identifies an ethical value that you’ve lived by,” he said. “You write a document for people in your life to instruct them on how you think life should be led and why you think they should take meaning from what you’ve written. I’ve taken the concept and applied the idea of applying a narrative around that, so it becomes a more readable and listenable experience.”
A “last say” may be delivered orally in the author’s honor at a memorial, kept as a keepsake by family and friends or just hidden away. Gelb said he believes narratives will become increasingly popular as 75 million American baby boomers age, care for parents and seek meaning from past experiences.
Having the Last Say will be available in bookstores Aug. 4. Gelb stressed that his guide is not an exercise in memoir or journal writing, and is meant for the average person without any professional writing experience.
The 250-page book, complete with examples of edited “last says” from a few of his friends, is divided into broad chapters, including Point of View, The First Draft and Polishing. The goal: honest self-expression.
I chose a different path and did the unthinkable: I left home. The first person in my family, male or female, to go to college, I went away for school and then moved to New York City to live and work among strangers. I made the life I had always dreamed of having when I was a child in South Philly, and I thrived in this larger world of theatre, museums, friends from around the world. Drawn to Judaism since my adolescence, I fell in love with a Jewish man and converted. – Lydia
Although the book has a relaxed tone, Gelb does not like sloppy writing. Much of the guide focuses on the importance time management and multiple drafts.
“I routinely suggest to my college applicant writers that they keep their essays clean and simple. I say the same thing to my adult writers, but they tend to resent the suggestion,” he writes. “(A) reader will never hold clean, simple writing against you.”
Support for physician-assisted suicide is proliferating in state legislatures across the nation as proponents contend the practice enhances patient freedom at the end of life and guarantees terminally ill adults a way out of pain and suffering.
Physician-assisted suicide is legal in only a handful of states including Oregon (the first state to legalize the practice in 1997), Washington (passed by ballot measure), Vermont (passed by state Legislature), New Mexico and Montana (allowed by the courts).
However, support for so-called “Death with Dignity” legislation has grown in recent years as advocates, including Compassion & Choices and the Death with Dignity National Center, work to turn the issue into a political and social movement. It seems to be working in California, the nation’s most populous state.
Senate Bill 128 (The End Of Life Option Act) by State Senators Bill Monning and Lois Wolk recently passed through the Senate 23 to 15. The legislation is now in the Assembly and will be voted on in early July.
“I’m cautiously optimistic that it will pass, but you never ever know for certain until the day of the vote,” George Eighmey, vice president of the Death With Dignity National Center, told Life Matters Media. “There are many people who are facing death who wish to have one more option in considering how their life is going to end, in addition to palliative care, hospice care, taking medicine or not taking medicine.”
On the East Coast, Maine’s “Death with Dignity” bill, LD 1270, was narrowly defeated by a single vote in the Senate in June. In 2012, voters in Massachusetts, one of nation’s most Catholic states, narrowly voted down a similar referendum.
Shortly after the Vermont legislation became law, Peg Sandeen, executive director of the Death with Dignity National Center in Oregon, told LMM she believes Midwestern states, including Illinois, may be 10 years away from passing some form of “Death with Dignity” legislation.
Mark Sheldon, distinguished senior lecturer in the Medical Humanities and Bioethics Program at Northwestern University, said he is evolving on the issue as he grows older.
“For a very long time I was very opposed to assisted death, but in the last decade or so I became a supporter of it under certain circumstances,” Sheldon said. He would support aid-in-dying for patients seeking a sense of control over their death and facing extreme pain.
“I’m aware of the arguments against it, and palliative (comfort) care is important, but there are instances when adequate pain control is not available,” he added. “Sometimes adequate pain control is very heavy sedation, and that’s something that makes me uncomfortable.”
Sheldon, who does not wish to be a financial burden to his family if he ever becomes seriously ill, told LMM that assisted-death is a viable option for him. He would rather save resources for his children.
Still, the public remains closely divided on the issue, with 47 percent in favor of laws that would allow doctor-assisted suicide for terminally ill patients and 49 percent opposed, according to PEW Research.
Despite calls for legalization from a growing number of proponents, the American Medical Association remains firmly opposed to such policy. The Chicago-based AMA is the nation’s largest organization of physicians, representing nearly 200,000 doctors, medical students and residents.
“It is understandable, though tragic, that some patients in extreme duress – such as those suffering from a terminal, painful, debilitating illness – may come to decide that death is preferable to life,” according to a statement sent to LMM. “However, allowing physicians to participate in assisted suicide would cause more harm than good.”
Many physicians, bioethicists and religious leaders caution that physician-assisted suicide is incompatible with physicians’ primary role as healer and would foster resentment towards sick people hoping to live as long as possible, no matter the costs.
Mark Kuczewski, director of the Neiswanger Bioethics Institute at Loyola University Chicago, is concerned that society and medical providers have become too focused on making dying patients “productive” and not content with just “being.” That mindset, Kuczewski added, leads some to view dying patients as unnecessary and even weak.
“Once we go down that road, it’s very hard for us to retain the alternate option: to help people live every moment of their remaining life with quality and dignity. There’s a tendency, once you institutionalize it, for the right-to-die to become the duty to die,” Kuczewski said. “Once you have a society that facilitates this, once you have that, it’s so easy the way that mixes with our culture, for it to be hard for anybody to be a healer in those situations or have an alternate point-of-view.”
Others point to advances in hospice and palliative medicine that can help to alleviate pain. But proponents of physician-assisted suicide, including Eighmey, say just knowing the option to end life is available can serve as a source of comfort.
The Brittany Maynard effect
Many right-to-die advocates credit the recent high-profile death of 29-year-old Brittany Maynard for raising awareness about the issue amongst so-called Millenials (adults 18 to 32).
In 2014, Maynard was diagnosed with an aggressive glioblastoma brain tumor and was later given six months to live. Maynard and her husband, Dan Diaz, moved from California to Oregon because that state did not allow terminally ill adults to end their lives with doctor-prescribed barbiturates.
Working with Compassion & Choices, Maynard used her story to raise awareness about the practice and inspire other terminally ill Americans to end their lives on similar terms. She ended her life later that year, sparking headlines across the world.
“I don’t wake up every day and look at it, I know it’s in a safe spot,” Maynard said in a Compassion & Choices-produced video about her life-ending drugs. That video has been viewed more than ten million times via YouTube. “I will pass peacefully with some music I like in the background.”
Like Eighmey, Compassion & Choices President Barbara Coombs Lee said Maynard “changed everything,” partly because she introduced Americans to the human side of the issue.
“She has single-handedly transformed our whole movement from from one organization working actively in the field to a broad movement where all kinds of people are introducing bills and filing lawsuits and becoming active,” she said last year in Chicago. “We will see bills advancing in many, many states. Her brazen visibility helped to increase momentum.”
A French mother and son are working to bottle the scents of your deceased loved ones.
Katia Apalategui and her son, Florian Rabeau, say they have developed a secret process of preserving the unique scents of family members and hope their efforts will be used to comfort those in mourning. For about $600 (the price is still being worked out), buyers will be able to spray a deceased spouse’s pillow or blanket with their own personal aroma.
Apalategui, a 52-year-old insurance saleswoman, developed the idea with regional innovation agency Seinari — a French government initiative that helps entrepreneurs to launch businesses and to market products for free. Rabeau worked with the Department of Organic and Macromolecular Chemistry at the University of Le Havre to refine this process.
Life Matters Media questioned Rabeau about his project and its inspiration. His responses have been edited for length.
What inspired you to recreate the scents of deceased loved ones?
On Father’s Day in 2007, my grandfather passed away. Some people need to keep a photo, a video, an object or a vocal message of a loved one. My mother, Katia Apalategui, needed to keep the smell of my grandfather, Fermin Apalategui. At the beginning, she thought that she was crazy. Later, she decided to explain her idea to my grandmother, and she realized that she felt the same way. In fact, my grandmother kept a pillowcase with the smell of him.
As we explain on our website, my mother was looking for a mixture of different smells that wasn’t only his cologne. My grandfather was sick and diabetic; now we know that some diseases give off a special smell.
Moreover, he would spend all day in his bed, because he also had cancer. His little dog was always with him, and his dog had a very special smell, too. By the end, he was perfumed with Fahrenheit, which is very strong cologne. So in reality, my mother was looking for this whole olfactory symphony.
How are the scents created?
We spent a lot of time (around seven years) and money to develop the process, so we decided to keep it secret.
In contrast, I can tell you that to faithfully do our job and re-transcribe the smell of a loved one, we need a cloth really soaked in scents. In fact, that is the raw first way to give to people who are really sensitive to smells some olfactory comfort.
Between the time we receive the cloth and the time we give it back with our handmade luxury box, we need approximately two weeks.
When can people buy them, and will they be available in the U.S.
We still have a lot of things to do before we are ready, but our laboratory will be up next October. At the beginning, we planned to launch our olfactory comfort box on the French market through funeral directors. During these last months, we realized there is a real infatuation from other countries, and more specifically, from the U.S.
Consequently, we are working to put our website in English as soon as possible and propose a way for all olfactory sensitive people to order directly from our site at the end of the year.
You have received a lot of media attention about your product, does this surprise you?
Humbly, we didn’t expect the worldwide media attention. We thought that only few French regional media would be interested. We have conducted interviews for the U.S., Canada, Brazil, Europe, South Africa, Russia, Japan, Australia and others. We are very happy to see that a lot of people are sensitive to smells– that proves that we were right to persevere. Now, we are looking forward to launch Kalain and to be able to give some olfactory comfort.
What will people receive?
We are not selling just a bottle of perfume, but a complete handmade box to comfort yourself for very special occasion. Actually, we are working with a designer to offer the best value to our customers.
But I can tell you that our product will be composed of a space to put a photo of your loved one, a square silk with his or her initials, a small piece of ceramic from Limoges, France that is designed to perfume it as many times as you want, and our wonderful bottle.
Moreover, we just had a new partnership with ParadisBlanc.com, a website specializing in the creation of online memorials. So we will also offer to all our customers a way to create an online memorial.
We would like to specify that we are not perfumers; we offer olfactory comfort to people who are sensitive to olfaction. Actually, our bottle is 10 ml, so it is really a small diamond destined to offer comfort. (Estimates place the cost at £400, or about $600)
Designer Anji Becker is using fashion to send a strong message: Life is short, and death is coming for us all. It sometimes comes without warning, so enjoy life while you still can.
Becker decided to explore her passion for fashion after the recent deaths of her parents, especially that of her mother, Christine Sikora, in 2013. In honor of their deaths, she named her contemporary fashion collection “We Are Mortals.” The deaths of her parents was her first experience with the end of life.
“I had just lost my mom to cancer. She had pretty much a year since she found out she had cancer to be able to make the most of it,” Becker, 34, told Life Matters Media, explaining that such a prognosis heightened the urgency in her mother’s life, as well as her own. “Her life was cut short, and that pushed me to pursue what I wanted to do.”
Becker had little experience with bold fashion or creative marketing. She obtained a teaching degree at the University of Wisconsin-Milwaukee before moving to San Diego, where she taught elementary school for seven years. Sewing was her hobby, one that she learned from a good friend. Now she hopes it can be a career.
“I know life is short. I learned that lesson, so you just have to go for it,” she said.
Becker said her beliefs about death- that it is the great equalizer- are mirrored in her clothes. Her fashions are gender-neutral, unexpected and casual.
She describes the collection as “futuristic sci-fi meets streetwear.” Most pieces are black or white, with fluid patterns or printed geometric designs. A tank top worn by a man is designed to double as a dress for a petite woman. The stark collection could easily fit into any post-apocalyptic movie, because gender norms no longer matter.
Becker acknowledges that she is delivering her message in very subtle ways. Most who have seen her collection are first drawn to its affordability (pieces cost between $80-$150) before considering their own mortality.
Becker said her fashion is just one small part of what is becoming a much more common theme in the U.S. Many are learning to talk about death and mortality and becoming exposed to the issues, similar to considerations relating to the LGBT community.
“Right now, new topics are being explored,” Becker said. “Everyone is questioning gender norms and sexuality– gay, straight, bi or whatever. Having to deal with my mother and father dying all at once was really hard. It was in my face and I had to deal with it in a positive way,” she said.
To raise the funds for her mission, Becker launched a Kickstarter crowdfunding campaign this week with the goal of raising $14,000 by July 8. She has already secured nearly $4,000.
“I feel like in life people don’t know why they’re here,” she said. “Thats a huge thing for us as humans to handle. That’s where this whole idea of death comes in. I guess we’re just here to enjoy it and make the most of it.”
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- Reuters Health: LMM Reports
- Voices in Bioethics: LMM Commentary
- Activist Finds Inspiration In Death
- Writing Coach Hopes Boomers Share Their Life Stories
- Fulfilling ‘Three Wishes’ Helps ICU Staff Honor Dying Patients
- After 30 Years, Changes To Medicare Reimbursement Of Hospice Care
- Six Years After ‘Death Panels’ Debate, Medicare To Pay For End Of Life Talks
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Daniel Gaitan serves as a content producer...More