Newswire

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.


‘Death With Dignity’ Gains Steam, Remains Divisive

Brittany Maynard sparked headlines across the globe

The death of Brittany Maynard sparked headlines across the globe

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 P Sheldon, PhD Lecturer in Weinberg College of Arts and Sciences

Mark P Sheldon,
Lecturer in Weinberg College of Arts and Sciences

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.

Opposition remains

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 Institute

Mark Kuczewski, director of the Neiswanger Institute

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.”

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French Mother And Son To Bottle Scents Of Deceased Loved Ones

Courtesy WikiMedia Commons

Courtesy WikiMedia Commons

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.

Courtesy Florian Rabeau

Courtesy Florian Rabeau

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)

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Fashion Designer Finds Inspiration In Death

Designer Anji Becker's new collection, "We Are Mortals"

Designer Anji Becker’s new collection, “We Are Mortals

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.

"We Are Mortals" aims finds inspiration in death - the great equalizer

Inspiration in death – the great equalizer

“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.

Designer Anji Becker makes gender-neutral items

Designer Anji Becker designs gender-neutral items

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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Poop, Death And Other Health Taboos From IDEO’s Paul Bennett

By Randi Belisomo

Poop. Hair removal. Amputation. Skin lesions. Erectile Dysfunction. Death.

Those are some of the few taboos remaining in health care, according to Paul Bennett, chief creative officer of the global design company IDEO.

Paul Bennett

Paul Bennett, IDEO

The San Francisco-based Brit has made a career by chipping away at some of the stigma surrounding several on such a list– encouraging colon cancer screenings through educational product design and removing visible signs of handicap from the homes of amputees. Now, Bennett is attempting to take away taboo from the condition he jokes as having “100 percent market penetration”: death.

The designer, now associated with the widely-praised and sensory-engaging Zen Hospice Project, recently addressed a group of health technology entrepreneurs at MATTER, a shared-office hub in Chicago’s Merchandise Mart.

“It’s one of the biggest taboos to stare down and design for,” Bennett said, sharing that the inspiration for his newest interest was his father’s end of life experience. He died 13 years ago from bone cancer.

“He was obsessed with maintaining his dignity, and he said ‘if I can’t wipe my own ass, turn me off please.’” Bennett’s father asked family members not to visit in his last days, as he did not want to be remembered in such ill health. “He was being a designer, trying to design the one thing he had left– his death,” Bennett said.

Bennett also recognized that this death could have been easier, and less traumatic for his mother. That experience is one from which he said she will recover. Bennett knew then that his father’s death should not have had to be that way.

Zen Hospice Project

Zen Hospice Project

In the years since, however, a remarkable shift has occurred. “Media is suddenly making death a very hot topic,” he said. “All of the sudden, we’re asking ‘who was I, who am I, and what will I be?” It’s the responsibility of our culture and social development to help others answer those questions.

Bennett urged those with the talent to do so have an obligation to help make this reality of death look something like each individual’s life. However, if dying remains so taboo, most will remain uncomfortable in both learning and sharing what an ideal end of life experience would mean to them.

Bennett offered the following advice to physicians and other care providers discussing end of life issues with patients, for businesspeople working in death-related fields and for family members facilitating important conversations about the topic.

Principles in Potentially Taboo Spaces:

1) Confront your own bias 

– One man’s taboo is another man’s normal

– What is taboo is context-specific and it changes with the times

2) Expose and normalize

Listen acutely to what is being said and not said

3) Be vulnerable 

Where am I?  

-Can I change my viewpoint?

4) Embrace the emotional

How do people feel here?

-How do they feel about their feelings?

5) Use humor

How do I lighten the heaviness?

-How do I create a safe space to laugh?

6) Meet people where they are

How do I engage people in ways they are ready to take in?

-How do I help them take small bites? 

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Preparing For Your Digital Afterlife

Courtesy WikiMedia Commons via Flickr

Courtesy WikiMedia Commons via Flickr

Family photos, voice recordings, phone numbers and even legal documents could be lost if your loved ones are unable to access your social media accounts after death.

As technology reshapes interpersonal communication and document storage, Americans must learn to prepare for the unexpected.

Technology reporter Tim Akimoff and attorney Ronette McCarthy fielded questions regarding living wills, email and social media during “Your Digital Afterlife,” an event hosted by Life Matters Media and Chicago NPR affiliate WBEZ.

Life Matters Media’s Guide to Digital Death

• Wills are the only truly effective way to manage all your digital assets

Wills are expensive, especially for young people starting out. Although there are some digital tools that can help, none are as complete as a will completed by an experienced attorney.

If you do much of the work yourself, you can have a will drafted between $300 and $1,200, depending on where you live.

One popular service is RocketLawyer.com, but it is time consuming, limited and comes with a cost.

• Each social media company has a different set of rules governing privacy and death

The only way to ensure loved ones have access to your online accounts is to provide them passwords and instructions in a will or easily accessible document. Start by gathering your digital assets into one place (password manager, spreadsheet).

• Facebook allows users to create memorialized accounts and appoint a “legacy contact

Facebook allows U.S. users to create memorialized accounts – the word “remembering” is added to the decedent’s profile. On memorialized accounts, friends can share memories, photos and posts, depending on privacy settings. Memorialized profiles do not show up in public spaces, like friend suggestions.

You can choose a “legacy contact” to administer your Facebook profile when you die.

How to: 

From the top right of Facebook click the down arrow next to the globe and select settings 

From the left menu, click security

Click Legacy Contact

You can also opt to have your account permanently deleted.

• Google offers a “death manager

Google’s Inactive Account Manager, or “death manager,” allows you to indicate what should happen to digital contacts, emails and web history once they are no longer actively managed.

As many as 10 approved family members or friends may have access to data from an account, or the account can be terminated and its data erased after a pre-selected time period.

How to:

In the Google Account Settings, scroll down the page and click “Inactive Account Manager”

Then click Setup

Indicate preferences, time period and alerts

Click the Enable button

•  Twitter is a tough bird to tame

Twitter’s death policy needs improvement. You can have a deceased user’s account removed only after submitting an official request to Twitter. Twitter will send an email with further instructions and requests for information about the deceased, a copy of your ID and a copy of the deceased’s death certificate.

• Password management systems can be a useful way keep your digital assets protected while at the same time providing peace of mind

Some of the best password management systems are 1Password, DashlaneKeeperLastPassMSecurePasswordBox and RoboForm.

  • If you use Yahoo! Mail, switch!

Unfortunately, anyone who agreed to Yahoo! terms and conditions will lose data after death, because nothing is transferable. Your email is quickly shut down after a period of inactivity or death.

  • Young attorneys are often well-trained in wills and trusts

There is a misconception that wills are incredibly expensive. Young counselors are often trained by experienced mentors who can draft a will for hundreds- not thousands- of dollars. It’s a much better option than using Legal Zoom or a one-size-fits-all printable will.

  • Always keep a paper copy of important legal documents and passwords somewhere safe

Tech companies offering digital file cabinets may not be around in 10 or 20 years. Update your paperwork yearly.

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Daniel Gaitan serves as a content producer...More