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.
“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.
Roughly 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.”
French Mother And Son To Bottle Scents Of Deceased Loved Ones
Posted on Tuesday, June 23rd, 2015 at 2:36 pm by lifemediamatters
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)
Rare Bipartisan Health Legislation Pushes Advance Care Planning
Posted on Monday, June 15th, 2015 at 1:16 pm by lifemediamatters
Rare bipartisan health care legislation is gaining momentum in Washington that would reimburse doctors and teams of providers to help patients suffering serious illness with advanced care planning.
The legislation, called The Care Planning Act of 2015, was introduced in the U.S. Senate by Mark Warner, a Virginia Democrat, and Johnny Isakson, a Georgia Republican. The bill would for the first time provide reimbursement under Medicare to health professionals to consult with patients about end of life care, including advanced directives.
“This (legislation) is not intended for the advanced care planning process to be static,” said the National Hospice and Palliative Care Organization’s Jonathan Keyserling in an interview with Life Matters Media. “It should be dynamic. This should help the patient and family to better understand the disease trajectory about their health care goals and convey those goals to all of the relevant medical care providers.”
It is believed to be the first major push in Congress behind legislation to reimburse medical providers for consultations since Sarah Palin, the former 2008 Vice Presidential candidate, contributed an avalanche of demagoguery on an effort to include payment for advanced care planning early in President Obama’s first term.
Amid the health reform debate of 2009, Palin accused the Obama administration and Democratic proponents of creating “death panels.” Meanwhile, John Boehner, then the House Republican leader, said Medicare coverage of advanced care planning would lead to “government encouraged euthanasia.”
Though neither Boehner nor Palin were accurate in their allegations, Medicare reimbursement for consultations was stripped from the legislation.
This time, there is bipartisan support and momentum for what lawmakers are calling a “voluntary and structured discussion about the goals and treatment options for individuals with serious illness, resulting in a documented care plan that reflects informed choices,” a memo from Warner’s office describes.
Sens. Warner and Isakson already have several Republican and Democratic sponsors to the legislation. Supporters include Democratic Sens. Tammy Baldwin of Wisconsin and Amy Klobuchar of Minnesota, as well as Republican Sens. Shelley Moore Capito of West Virginia and Susan Collins of Maine.
“In the last several years, some have deliberately chosen to misrepresent the purpose of care planning services to frighten people to score cheap political points,” Sen. Warner said in a statement. “It’s about making sure that your doctors, your hospital, and your family know what choices you have made about your care. If a patient prefers to explore every possible treatment option, that choice will be respected.”
Under current law, doctors can receive Medicare reimbursement for “medically necessary” care during their annual wellness visit. This care can include discussions about end of life care or advanced care planning and directives. However, consultations about end of life care cannot be the only reason for reimbursement to physicians, according to the Centers for Medicare and Medicaid Services.
The proposed legislation would create a new benefit under Medicare for “planning services” for those with advanced illnesses that would not only reimburse doctors, but include payment to an entire team of providers such as nurses, social workers and spiritual counselors.
“This (legislation) doesn’t create an opportunity for a physician alone to bill for advanced care planning,” Keyserling told Life Matters Media. “The Senators have taken a different tack, envisioning an interdisciplinary approach. It brings more accountability, better care coordination and better alignment of what the family desires being delivered to them.”
To be sure, the legislation calls on the U.S. Department of Health and Human Services to develop a set of quality metrics that will measure, among other things, whether the patient’s stated goals are in sync with the documented care plan. Also measured will be the treatment that is delivered and what the outcome of the treatment was on the patient.
Providers of medical care say the reimbursement and related aspects of the legislation will fill a void in patient care.
“This legislation closes a gap in the health care system, and will strengthen our ability to comprehensively and appropriately address complex care needs that are core to our mission: to care for the whole person,” said Dr. David DiLoreto, chief executive officer of Presence Health Partners, a large network of Chicago area doctors and other providers. “We want to enhance the patient experience by truly allowing their voices to be heard in a way that is meaningful for them and for their loved ones.”
Medicare, like most private health insurers, is increasingly moving from a fee-for-service model of health care that rewards volume of care delivered to a value-based approach. This shift is designed to better ensure that patients are getting the right care, in the right place and at the right time.
“If an individual prefers a different approach after informed consultations with their health team, their families and others, those choices should be documented and honored too,” Warner said. “The important thing is being able to make that decision and trust that it will be respected.”
Several Senators backing the legislation have issued a parade of statements in the last week talking about their personal stories. Those stories come with a common thread about how lost they were when it came to advanced care planning.
“Having recently lost both of my parents, I speak from personal experience when I say how important it is for families, loved ones and medical care providers to have clear direction when making decisions about treatment in their final days,” Senator Capito said. “Sadly, Medicare will not currently pay doctors to have this conversation.”
The legislation provides five million dollars in fiscal 2016, beginning Oct. 1 of this year. The funding directs the Center for Medicare and Medicaid Innovation to create an “Advanced Illness Coordination Services” pilot program to reimburse “wrap-around, home-based services” to Medicare beneficiaries and for testing other care-coordination models.
There is also a consumer outreach portion of the legislation that will involve launching a national campaign designed to encourage advanced care planning as well as funds for a web site with information about advanced care planning, palliative care and hospice. The information will also be included in the popular “Medicare & You” handbook, sent annually to millions of seniors and considered a senior citizen’s Bible to Medicare benefits.
More than 40 groups in recent weeks have touted their support for the program.
“This legislation would help respect individuals’ goals, values and preferences for care and treatment,” Joyce Rogers, senior vice president of government affairs for AARP said in a statement. “This legislation recognizes and supports the critical role that family caregivers often play in providing and coordinating care or their loved ones.”
Fashion Designer Finds Inspiration In Death
Posted on Monday, June 8th, 2015 at 9:35 am by lifemediamatters
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.”
Poop, Death And Other Health Taboos From IDEO’s Paul Bennett
Posted on Sunday, May 31st, 2015 at 9:29 am by lifemediamatters
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.
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.
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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