Learning To Age Well, With A Plan

Learning To Age Well, With A Plan

Posted on Wednesday, July 1st, 2015 at 10:39 am by lifemediamatters

We all face difficult trials, but few of us will lose both parents, an in-law and cope with a spouse’s newly diagnosed chronic illness within just two years.

Despite an illustrious career studying bioethics and teaching health law at Case Western Reserve University in Ohio, Sharona Hoffman said nothing fully prepared her for the challenges of navigating the financial, social and medical costs of aging and dying.

Author Sharona Hoffman

Author Sharona Hoffman

“In 2013 and 2014, both my parents died, my mother-in-law died and my husband was diagnosed with Parkinson’s disease at age 55,” Hoffman said in an interview with Life Matters Media. “I was learning a whole lot about the challenges of getting sick and growing older and facing the end of life. I already knew about a lot of these issues, but there is nothing like personal experience to really enliven your knowledge and drive these lessons home.”

She incorporated her experiences and advice into her new book, Aging with a Plan: How a Little Thought Today Can Vastly Improve Your Tomorrow, hoping it will help others avoid unnecessary stress and confusion.

Released in May, her book offers a concise, yet comprehensive resource for middle-aged readers beginning to plan for their future or care for relatives. Hoffman views it as an invitation to open discussion about death and disease.

AGINGPLANRoughly 200 pages, her work includes chapters and simple checklists focusing on finances (estate planning, long-term care), relationships (home management, when to stop driving, community living) and medicine (control at end of life, advance care planning, hospice).

Self-help books catering to baby boomers and their caregivers will likely become staples of bookstores as the population ages. America’s 65 and older population is projected to expand to 72 million by 2030, roughly 20 percent of the total population. Although many seniors are expected to live longer than their parents did, more than half will also require care for two or more chronic conditions.

“This will benefit everyone, but the target is baby boomers who should already be planning for their own aging process,” Hoffman added. “Being an academic enabled me to do a lot of research and use academic resources. It also enabled me to delve into the legal and ethical issues people may not know about.”

Most importantly, Hoffman encourages readers to complete important legal documents while they are mentally competent, especially because 40 percent of baby boomers do not have a living will. Nearly three quarters of all Americans have not made their end of life care wishes known.

“You need to tell people what your preferences are if you can’t make medical or financial decisions for yourself,” she said. “You have to have conversations. Do you prefer quality of life or length of life? My own experiences were a catalyst for the book.”


‘Death With Dignity’ Gains Steam, Remains Divisive

Posted on Monday, June 29th, 2015 at 11:58 am by lifemediamatters

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.”


French Mother And Son To Bottle Scents Of Deceased Loved Ones

Posted on Tuesday, June 23rd, 2015 at 2:36 pm by lifemediamatters

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)


What It’s Like When Your Fiancé Has Cancer

Posted on Friday, June 19th, 2015 at 12:58 pm by lifemediamatters

When I first heard the word that would give me rage palpitations, I was sitting in a chair in a doctor’s office, quietly tearing off the label on my water bottle. When I’m nervous, I rip things to shreds (Jezebel).


The Death Treatment

Posted on Friday, June 19th, 2015 at 12:57 pm by lifemediamatters

In her diary, Godelieva De Troyer classified her moods by color. She felt “dark gray” when she made a mistake while sewing or cooking. When her boyfriend talked too much, she moved between “very black” and “black!” She was afflicted with the worst kind of “black spot” when she visited her parents at their farm in northern Belgium. In their presence, she felt aggressive and dangerous. She worried that she had two selves, one “empathetic, charming, sensible” and the other cruel (The New Yorker).