October 2015 – Page 2 – The Amateur's Guide To Death & Dying

October 24, 2015October 23, 2015

Crowdfunding Funeral Costs for a Loved One

Friends and relatives now join online campaigns to cover expenses

When someone dies, it’s common to send flowers or make a charitable donation in his or her honor. But a growing number of mourners are turning tocrowdfunding sites specially designed to help cover the deceased’s funeral expenses.

“Most people don’t plan their funerals in advance and that leaves their loved ones figuring out how to cover the costs,” explains Michael Blasco, spokesperson for YouCaring, a two-year-old crowdfunding platform for medical and memorial fundraising.

Funerals Often Exceed $7,000

With the average funeral now topping $7,045, according to the National Funeral Directors Association, families often find that saying goodbye to their loved ones comes with a higher price tag than they anticipated. Enter crowdfunding.

Once the provenance of entrepreneurs and artists (think Kickstarter and Indiegogo), crowdfunding lately has gained traction as a means for fundraising for a range of causes, including funeral expenses. Organizers post their campaigns online and seek funding from backers to meet their goals. The average campaign lasts between 30 and 60 days and the money raised is transferred to organizers via PayPal or WePay accounts.

Funeral campaigns can be set up through traditional crowdfunding sites such asYouCaring, Indiegogo, GoFundMe and GiveForward. But in the past two years, niche sites, such as Funeral Fund and Graceful Goodbye have also sprung up.

Raising $10,000 in a Funeral Crowdfunding Campaign

GoFundMe is currently hosting more than 8,000 funeral campaigns. On Indiegogo, over 50 funeral campaigns reached their fundraising goal, including a handful that raised upwards of $10,000 apiece. Funeral fundraising is the fastest-growing category on GiveForward, growing an average of seven percent per month.

“A lot of campaigns start out as medical fundraisers and then transition into funeral and memorial fundraisers [when the person dies],” explains Ariana Vargas, director of business development for GiveForward.

Joshua Starnes created a campaign on Funeral Fund after his friend, fellow film critic Eric Harrison, died of a brain aneurysm at 57 in 2012. Harrison, who was single and childless, didn’t have life insurance and there were no proceeds from his estate to cover funeral expenses. His young nieces were left to come up with the funds for his burial.

“Putting together even a modest funeral would have been impossible for them and [his colleagues] didn’t have enough cash in our group bank account to cover the cost,” says Starnes.

Crowdfunding, Starnes decided, was the best option. Thanks to the generosity of 108 backers, he collected $6,520 during the 30-day campaign — enough to cover the cost of the funeral.

A Kind and Innovative Technique

Crowdfunding consultant Rose Spinelli isn’t surprised that mourners are using this innovative technique to subsidize funeral expenses.

“In the most basic terms, crowdfunding is a community-building mechanism that brings people together around a cause,” says Spinelli, founder of The CrowdFundamentals site. “It can be a wonderful, warm feeling to know that people care and are sharing in the grief.”

But shared grief might not be enough to turn mourners into donors and crowdfunding efforts for older adults can be especially challenging. Many people in their 60s, 70s and 80s believe their cohorts should be prepared for their passing, with savings or prepaid funeral arrangements.

“People are willing to come forward with support when something unexpected happens,” Spinelli says. “When an older person dies, it doesn’t trigger the same reaction.”

Some Donors Get Thank-You Gifts

To boost response rates and honor backers who help with funeral costs, some crowdfunding organizers offer small tokens of appreciation. One Indiegogo campaign offered a handmade remembrance bracelet in exchange for a $25 contribution; another promised backers who pledged $50 that they’d receive a hug.

Blasco encourages posting photographs and favorite anecdotes about the deceased on the campaign page to increase the odds of crowdfunding success. “People respond to stories,” explains Blasco.

But even the most compelling stories are not apt to attract the attention of generous strangers, however. Instead, most contributions will come from relatives and friends.

For example, most who contributed to Starnes’ crowdfunding campaign for Harrison were relatives, former colleagues and patrons of the arts who appreciated the critic’s work. “The funds came from people he had an effect on in his life,” says Starnes.

What a Crowdfunding Campaign Costs

A crowdfunding campaign can also turn into an online memorial, a place for loved ones to share special memories and connect with others in a shared grief.

“The original intent and purpose [of a funeral crowdfunding campaign] is to raise money but, in a dark time, it’s also a place to celebrate a loved one’s life,” says Vargas. “It brings people together from all over the country who can’t make it to the funeral but want to say goodbye.”

In a time of grief, some mourners might not read the fine print in a crowdfunding campaign for a funeral. Fees vary, but crowdfunding sites typically keep three to 10 percent of the money raised.

And if you plan to launch a crowdfunding effort for a funeral or will donate to one, be sure you’re aware of the tax rules.

Quin Christian, an accountant with CrowdfundCPA, says crowdfunding contributions to help cover funeral expenses are likely to be considered gifts and shouldn’t be taxable to organizers.

Be careful, though. Christian warns that a gold-plated coffin, towering tombstone or designer burial suit — or even hosting multiple funeral-related crowdfunding campaigns in a short period of time — could raise IRS red flags.

Donors can’t write off what they give to a crowdfunding campaign as charitable contributions unless the beneficiary is a nonprofit.

But the benefit of using crowdfunding to cover funeral costs usually has nothing to do with the bottom line. “I’m glad we were able to help make sure he [Eric Harrison] had a proper burial,” says Starnes.

Complete Article HERE!

October 23, 2015

How to Have Sex on Your Deathbed

by Simon Davis

It’s well-documented that old people can have active, flourishing sex lives. At least a third of people between the ages of 75 and 85 are getting it on, according to a survey in the New England Journal of Medicine. But how does your sex life change when you introduce the idea of dying—and when you know that death might be right around the corner?

There is remarkably little scientific research into the subject of sexuality at the end of peoples’ lives. But the research that does exist suggests sex remains important to those who are dying. Take this 2011 study, published in the Journal of Hospice and Palliative Medicine, which asked 65 patients with advanced cancer how their attitudes toward and experiences of sex changed as their disease progressed. While most patients reported significant decreases in sexual satisfaction and frequency, 60 percent of patients didn’t consider themselves less attractive after the disease. The majority—86.4 percent—said it was important to talk about sexuality with a medical professional.

As life expectancy increases, more and more patients will grapple with questions of sexuality and intimacy near the end of their lives. Dr. Sharon Bober is one of the people who tries to answer those questions. Bober is director of the Sexual Health Program at the Dana-Farber Cancer Institute, the main teaching affiliate of Harvard Medical School. Cancer treatments can have myriad effects on a person’s sex life: lack of libido, lack of privacy, pain, and a changed sense of identity. Bober’s program aims to provide “education, consultation, and personalized rehabilitation counseling for patients and their partners who have experienced changes in sexual health during and after cancer treatment.” In other words, even terminal cancer doesn’t have to stop you from getting laid.

I reached out to Dr. Bober to find out more about the challenges relating to sexuality among people who are terminally ill, and the importance of helping people manage a healthy sex life—even if their lives are coming to an end.

VICE: Why is end of life sex becoming a bigger deal?
Dr. Sharon Bober: More and more people live longer with life-limiting diseases. The kinds of things that would have been quickly fatal not long ago are often times conditions or diseases that people [now] live with for longer. For example, people are living with advanced-age cancer or severe respiratory disease in a more chronic way. It’s not forever—because people are still dying—but they are living [with them] for years. The idea that you might be fatigued, you might not feel great, you may not have a lot of energy, you might be weak… but you’re not dead.

And if you’re not dead, you might still want to have sex. How does terminal illness affect someone’s sex life?
The general physical symptoms that have an impact on sex are on the short list of problems: fatigue, nausea, pain, potentially erectile dysfunction, vaginal dryness. Men who have advanced prostate cancer are able to live several years with that situation. There are hormonal therapies that are more and more effective in helping them live with this disease for three, four, five years. In that particular situation, guys often have significant changes because of the hormonal component where they have no testosterone. Often, men have profound erectile dysfunction and feel very neutered in certain ways and don’t feel sexual in the way that they used to. It will have a real impact on vitality and experience of masculinity.

What about people undergoing treatment?
If you shared a bed with your partner for 40 years, and now for the last couple of months of your life you’re in a hospital bed in your living room, you can bet that you’re thinking about sex. It might not be in the context of I wish I could have sex, but more of all the things that you’re losing, of all the things that are changing. The fact that that doesn’t get acknowledged in an explicit sort of way for a lot of people is a real source of suffering.

Another example is people might have questions about sex because maybe now they have symptoms like erectile dysfunction or vaginal dryness and they’d like to be able to ask the doctor a question about that and all of a sudden they realize that they are never alone with the doctor without one of their adult kids coming with them. That’s a conversation that you’d love to ask your nurse about, but you’re actually never alone.

It also seems like clinical settings might make it awkward to talk about sex.
In the hospital or [in] hospice, you are literally never in a situation where you can have privacy. Staff are coming in and out of a room and you would like to have sex at least one more time and you wish your partner could get in bed with you—but you’re afraid someone’s going to barge in and you’re not sure how to talk about that.

So, is it possible to get that kind of privacy?
Sure. I think that in a hospital setting or in a hospice setting, it’s actually OK to say to the doctor or nurse, “We would like to be able to have some privacy.” Is there a way to put a sign on the door that says “Do not enter between 5 and 6 PM” and make sure that the staff respect that? It’s OK to ask that.

I was giving a talk with a bunch of palliative care doctors around sexuality and end of life. We were discussing how there are all sorts of things that we do in in-patient hospice care to make sure that people are comfortable—things like giving people permission to bring in animals and therapy dogs. And yet, we don’t talk about, “Would you like to have some time with your partner alone?” Somehow [when it’s] sex, we don’t talk about it. That really shouldn’t be any different than anything else that’s on our minds to make people more comfortable when they are in hospice care.

So it’s more a matter of fostering a dialogue and offering a more understanding environment.
Yes, and I do think that from a quality of life point of view, many times the goal is not to be able to change the mechanics. You might not be able to make somebody physically feel well enough to be able to have sex again—but that’s not necessarily what’s needed. Some people would just like to be able to express to a partner what it means that they feel sad that they’ll never be in the same bed again. Or to say to a partner, “Even though we can’t be in the same bed again, it be really great to be able to be naked and hold each other.”

What about patients who are physically well, but not mentally—like patients with dementia?
That’s complicated because there are many different types of dementia. Certainly, I think there’s been a fair amount written about people with Alzheimer’s in nursing homes partnering up with new people and [not having] a real memory of [their current partner]. I think we’re just beginning to learn more about what that means for people to live a long time with profound cognitive changes.

Sometimes people literally feel disinhibited and that’s sometimes part of the cognitive changes. People are all of a sudden more sexual. For example, Zeke Emanuel has written about the fact that STIs are on the rise in nursing homes because people who are older are still very much sexually active but are not necessarily doing it in a safe way. I think it’s a real question about what do you do when people are sexually active but not cognitively intact. There’s also real questions around consent. I don’t think there are easy answers, but I definitely think as a culture, we need to be talking about it. Because we are only going to see more of this. It’s not going in the other direction as people are living longer but in ways in which they are really altered—they are not the same person that they used to be.

What is the biggest misconception around sexuality at the end of life?
That it’s not on people’s minds. The biggest misconception is that people who are really sick and living with life-limiting illness or end of life are not sexual beings and that they are no longer distressed by the loss of sexuality. That’s not true. Being able to allow people space to talk about it or to feel connected [is important]. You may no longer be able to have sex with your partner, but you still feel like you are someone’s partner. Your relationship as a lover, as a partner is not the same as a daughter, or grandmother, or aunt.

When you think of it in terms of someone’s identity of one’s self, it’s different. Figuring out how to still have that sense of connection with yourself, with one’s partner. Even as you’re saying goodbye, that’s important. And the fact that we don’t allow that, or many people don’t feel like that’s something they can talk about is a shame. We live in a culture that’s just saturated with sex but actually has very little to do with real sexuality. This is real stuff that people need to be able talk about and figure out.

Complete Article HERE!

October 23, 2015October 23, 2015

Seattle nurse vows to create region’s first hospice for children

By Mark Miller

She pages through a book of photographs filled with the faces of children. And the letters they’ve written.

The images are of young people who lost their battle with cancer, but spent their final months expressing thoughts about life, love and hope.

Suzanne wants to make sure those final months can someday be spent not in a hospital, but in the nurturing environment of a children’s hospice.

“We can do this,” said the oncology nurse, who has worked at Seattle’s top hospitals. “We can set an example and a template for the rest of the country and show them what can happen when a community comes together and cares about their children.”

This has become Suzanne’s mission since she learned years ago that there are only two children’s hospices in the entire country. Not one in all of the Pacific Northwest, not even Seattle.

“Because it makes people feel uncomfortable nobody’s talking about it and therefore nothing is being done,” said Suzanne.

She has more than thirty years of experience taking care of cancer patients, mostly children.

“Somebody needs to do this. I’m somebody,” she said. “So I founded Ladybug House.”

For the past two years Suzanne has dedicated herself to organizing, advocating and fundraising on a quest to transform her idea into reality.

Ladybug House has gained momentum and support, but what the project needs most is $12 million and a 3-to-5-acre plot of land to start build what she envisions to be a state-of-the-art facility serving young people in need of hospice care.

While some families of terminally ill children are able to take their children home, the burden on parents can be overwhelming.

Gienna Njie is a mother who was stunned to learn there was no hospice option for her daughter, Ahmie, who passed away June 14th after battling a rare sarcoma.

“Kids do die and kids do suffer and they need a place where they can go to be happy,” Gienna said. “It’s so important that kids and their families can live in the moment in the last days and do some amazing things and have memories.”

And that, according to Gienna and Suzanne, is the unique setting a hospice can provide. Hospitals, they say, provide excellent care, but the end-stage of life does not have to unfold in a clinical setting.

“Ladybug house will be a place not just about end-of-life care,” Suzanne said. “It’ll be a place where families have a break during the unimaginable, during those hard times. They don’t have to be the caregivers all the time. They can be cared for.”

The hospice will also provide opportunities for children to express themselves through art, to have pets available and to interact with other families going through the exact same experience.

Suzanne’s plan calls for suites where families can sleep overnight for extended periods of time, and communal kitchens where people can cook their own meals or have meals prepared for them.

“It’ll be a place where legacies and memories can be made and where families can celebrate every day,” she said.

Gienna says it was a privilege to be the primary caregiver to her 14-year-old daughter, but the stress of becoming a de-facto home nurse was daunting at times.

“I would not have wanted to be anywhere else, but it was exhausting and it took away from actually being able to spend as much quality time with her, to just be a family without worrying about oxygen tanks and medications,” she said.

Gienna describes her daughter as strong, creative and filled with exuberance for living life to its fullest.

“She was somebody who could walk into a room and everybody would smile and say, ‘who is that beautiful girl?'” Gienna remembers. “Ahmie was well-loved and she was such a phenomenal person and a loving person.”

In the moments when Ahmie was in greatest pain, they would touch their heads to one another and focus on breathing. And then they would talk.

“We started to have conversations about what we could do to help other children that were suffering,” said Gienna. “I said if you’re not here I will make sure that children don’t suffer as much as you have had to suffer.”

Gienna learned about Suzanne’s mission to provide a hospice option to children like Ahmie.

When moments of discouragement or frustration arise, Suzanne finds inspiration in that book of children’s photos and letters.

“When I think I can’t do it any more I look in here and remember that I don’t have a choice,” she says. “This isn’t about me. It’s about them. It’s about them and their families and that they all deserved better.”

Suzanne says the U.S. Is far behind other countries when it comes to providing hospice care for children. There are more than 50 in the United Kingdom, 8 in Canada and 5 in Australia.

The children’s hospices in the U.S. are in California and Arizona.

It is frustrating for Suzanne and her supporters that there are about 3,000 hospice facilities for adults in this country and 400 for pets.

560,000 children across America are currently living with life-limiting illnesses.

Ladybug House has adopted a mission statement: “If we cannot add days to the life of a child, we will add life to their days.”

When you meet and listen to Suzanne Gwynn, you leave believing that she will succeed — that in the near future Seattle will have a hospice that will transform the lives of children and their families.

The following links provide more information about Ladybug House and how people can help. www.ladybughouse.org

Complete Article HERE!

October 22, 2015

Home Is Burning: the profanity-laced terminal illness memoir with fart jokes

Dan Marshall’s book about his father’s death – while his mother was stricken with cancer – is possibly the most scatalogical memoir of its kind ever, and now Hollywood has come knocking

By Rory Carroll

002 — The Marshall family on 22 September 2008, the day of Bob’s death. (Left to right): Dan, Michelle, Tiffany, Bob, Chelsea, Debi, Greg.

Dan Marshall sips an iced coffee under a Los Angeles sun and mulls the notion of Hollywood sanitising his memoir, the story of how he and his siblings dealt with terminally ill parents during an anguished year in the Mormon capital of Salt Lake City. Marshall shakes his head and gives a faint smile. “It’d tear the balls off the thing if they made it PG-13.”

It would indeed. Home Is Burning, published this month and due to be made into a film, dives deep into the pain and grief of caring for a father who slowly wastes away, and a mother who hovers close to death. It also plumbs the cacophonous dysfunction of a family stumbling through the ordeal with black humour, fart jokes, painkillers, booze, feuds, sex and swearing – epic, ungodly, obscene, unrepentant, relentless swearing.

“It’ll have to be R-rated,” says Marshall. “There’s a lot of death and dying but with South Park humour applied to normally difficult and sentimental situations. I’m making jokes about wiping my dad’s ass.”

The 300-page memoir jokes about everything: the cruelty of amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease, which killed Bob Marshall in 2008; the brutal side effects of Debbi Marshall’s cancer treatment; the vicious sibling arguments; the pious Mormon neighbours.

One unforgettable section details Debbi’s declaration that she will perform oral sex on her husband – by then confined to a bed and respirator – daily until he dies. “My mom was beyond proud of the blow-job-a-day goal. I don’t know if it was because she was all fucked up on Fentanly or what, but she seemed to bring it up any chance she got. ‘A blow job a day. Not a bad deal,’ I heard her explain to a visitor. ‘You wouldn’t think it, but his penis is still strong.’”

003 — Debi with Bob, the day before his death.

The Marshall clan is barging into a terminal illness genre rife with sentimentality – think The Fault in Our Stars, Before I Die, Tuesdays with Morrie – with a unique strain of profane, scatological humour. Prominent memoirists have endorsed Home Is Burning. James Frey, author of A Million Little Pieces, called it hilarious and heartbreaking. Justin St Germain, author of Son of a Gun, deemed it self-aware and ruthlessly honest: “Dan Marshall might be a self-described spoiled white jerk, but he’s also a depraved comedic genius.” Publishers Weekly called him the literary love child of Dave Eggers and David Sedaris.

In person Marshall, 33, is softly spoken, almost shy. He mocks himself in the memoir as a dumpy, boozy, gummy bear-chomping screw-up. But the figure who settles into the corner of a restaurant terrace, seeking shade on a baking afternoon, is somewhat reformed. He has quit drinking, jogs and has, by his own measure, matured.

Conjuring success from tragedy has been bittersweet. His beloved dad is dead and his mother is still ill – loss and pain which redirected Marshall from a job in public relations.

He chronicled his experience as a caregiver in Facebook posts: raw, unfiltered outbursts alternately expressing solidarity with and resentment at those around him, and bewilderment at their predicament. After his father’s death Marshall moved to LA, studied screenwriting and found a toehold in Hollywood writing comedy. The memoir, his first book, has vaulted him into another league.

The independent studio New Line snapped it up and contracted Marshall to turn it into a screenplay. Jonathan Levine, who directed the zombie comedy Warm Bodies, will direct the film and Miles Teller, the star of Whiplash and Divergent, will play Marshall.

“I was on track in the corporate world before dad got sick,” he says, stirring melting ice. “It changed my path.” It feels strange to be on the cusp of celebrity. “I feel less of a fraud. But it’s weird because no one knows who the fuck I am.” He pauses. “Some mornings I still wake up and feel like such a loser. I’ve no girlfriend and I write fart jokes.” He smiles but is completely serious.

Back in 2007, Marshall was in his first post-college job, enjoying independence from his family and dating his dream girl, a charmed “dicking around” existence. Then out of the blue the phone call which changed everything: your dad has ALS, come home.

After some hesitation, he did. The family lived in a big, plush house in Salt Lake City, the only non-Mormons in their neighbourhood. His mother, who had been battling non-Hodgkin’s lymphoma since 1992, was a spirited but ravaged chemotherapy veteran whose survival confounded doctors. She cursed like a sailor even before her life hung by a thread.

Bob had been the family’s anchor, a calming, levelheaded businessman who ran several small newspapers, nursed his wife, guided his children and competed in marathons. He was 53 when he was ambushed by the neurodegenerative disease which would gradually paralyse and asphyxiate him.

Debi decreed the family would care for him at home even though she was weak and woozy from medication. Dan’s sisters were also constrained. Tiffany, the eldest, was tied up with studies, work and a boyfriend (nicknamed “big cock Brian” after an ill-advised admission to her mother), and alienated by the arrival of Dan, who bullied her.

Chelsea was a troubled teen who drank too much and was having, it emerged, a clandestine romance with her soccer coach. Michelle, also a teen, had Asperger’s and struggled to understand her father’s plight. She sought refuge in dance and lavatorial jokes, which delighted Dan but no one else.

005 — Dan Marshall: ‘Tom Hanks playing Bob would be bonkers.’

The burden of care fell mainly on Dan and his brother Greg, who returned from university in Illinois, where he had enjoyed the freedom to be gay that was denied him in Utah. They converted a bedroom into a de facto intensive care unit, learned how to use a respirator, transported their father in a wheelchair and rickety bus, and bathed, changed and fed him.

As Bob turned skeletal and lost his voice, mother and siblings fought, reconciled and fought anew, with Dan and Tiffany in particular flaying verbal strips off each other. “Everything in that situation was heightened,” Dan recalls. “And I was a lot more rambunctious, and drinking. When you’re around family you’re more free in what you say and do because they’re family and will still love you no matter what. People’s true colours come out.”

A fierce devotion to his father sears through the pages. “It would have been easier if I’d hated him. But I loved him. He was such a good guy.”

Bob Marshall was stoic about his plight – and the sometimes chaotic, X-rated efforts to care for him. Dan programmed his Stephen Hawking-style communication device to include an icon with a limp penis. When clicked, it said: “Boy, I could use a blow job.” The line cracked up the family and prompted a tender unity: “Dad in the heart of the house, his little bald wife by his side, his children resting their hands on his shoulder. We all took in the moment.”

As other dramas unfolded in the wings – Chelsea marrying her soccer coach, Dan going on an ecstasy-fuelled one-night stand after his girlfriend dumped him – Bob Marshall eventually decided to end his agony. He decreed that the respirator would be turned off on 22 September, the first official day of autumn, his favourite season. The family, nerves shredded, weepy and frightened, referred to it as the “big unhook”. A doctor ensured there was no pain. Neighbours’ children released balloons into the sky.

Debbi is the star of the book, a fighter and survivor often half-crazed by medication. She has since had a mastectomy and now wears a wig. “She keeps texting me ideas about who should play her – Meryl Streep, Sandra Bullock, Laura Linney. But I tell her we’ll get Danny DeVito,” says Dan. There is talk of Tom Hanks playing Bob. “That would be bonkers. My dad loved Forrest Gump.”

The screenplay has a rom-com structure: selfish oaf learns life lessons and falls back in love with his family. It happens to be true, says Dan. He has reconciled with Tiffany and feels closer than ever to his family, all of whom, after some hesitation, blessed the book. His advice to other families facing similar ordeals: “Spend as much time as you can with each other. And forgive each other. Whatever resentments you’re hanging on to, let go.”

Complete Article HERE!

October 20, 2015

Will California’s end-of-life law push lethal drugs over costlier care?

Kevin McCarty, Susan Talamantes Eggman, Jay Overnolte — Assemblywoman Susan Talamantes Eggman (D-Stockton) is congratulated by Assemblymen Kevin McCarty (D-Sacramento), left, and Jay Obernolte (R-Big Bear Lake) after her right-to die measure was approved by the full Assembly in September.

By Soumya Karlamangla

Terminally ill cancer patient Barbara Wagner’s doctor wrote a prescription several years ago intended to extend her life a few extra months. But Oregon’s government-run healthcare program declined to pay for the pricey drug, saying the projected odds of the medicine’s keeping her alive were too low.

Adding to the distress of the rejection, Wagner later complained publicly, was what else was included in the denial letter she received. The state listed doctor-aided death as one of the treatment options that would be completely covered.

“[They] basically said if you want to take the pills, we will help you get that from the doctor and we will stand there and watch you die, but we won’t give you the medication to live,” Wagner said in a television interview at the time.

Wagner’s case became a flash point of the medical ethics debate over helping the terminally ill end their lives in Oregon, the state that pioneered the practice in the U.S. nearly two decades ago.

Now, as California pushes ahead with a similar initiative, experts say state officials here could face their own ethical controversies as they weigh details such as who should pay for life-ending care, particularly for patients in government-backed health plans.

Covering lethal prescribed drugs for such patients without also offering to pay for other far more costly end-of-life treatments could inadvertently pressure people into choosing the cheaper option, said Dr. Aaron Kheriaty, a UC Irvine psychiatrist and director of the university’s medical ethics program.

“It’s certainly a cost-saver,” he said.

Supporters of California’s law and other experts say it ensures life-ending decisions will be left to patients and that covering drugs that aid in dying won’t push people to make that choice. So few people will opt for doctor-assisted deaths, they argue, that the financial savings will be tiny compared with overall healthcare costs and won’t create a significant economic incentive for insurance carriers to even subtly encourage that medical alternative.

Under California’s End of Life Option Act signed by Gov. Jerry Brown this month, physicians, starting sometime in 2016, will be allowed to prescribe lethal drugs to adults diagnosed with terminal illnesses who are expected to die within six months and request assistance to end their lives.

The law does not require private insurance companies to cover such medicine. And state officials with Medi-Cal, the health program for the poor that covers more than 12 million people, say they haven’t determined whether their plan will pay for such treatments.

A state legislative committee analysis concluded that any costs or savings for Medi-Cal from legalizing doctor-aided death would be minor, depending on whether the lethal drugs are covered. The biggest projected expenditure would be about $323,000 to set up and operate a data system to manage paperwork associated with the program.

Many health advocates and experts expect Medi-Cal, like Oregon’s state-run health plan for the poor, to cover the life-ending treatment.

William Toffler, a family physician in Oregon, says California would be making a mistake. He contends that Medi-Cal officials would be forced into a new and significant ethical dilemma, balancing their responsibility to control costs and ration care with ensuring that patients receive the most effective medical treatment possible. The barbiturates prescribed to patients to end their lives cost about $1,500. Average healthcare spending in a patient’s last year of life is $33,486, according to federal data.

“It’s a terribly wrong-headed move. It’s a conflict of interest for doctors; it’s a conflict of interest for the state,” Toffler said.

Vermont and Washington — which more recently permitted physicians to write lethal prescriptions — and the federal government’s Medicare health plan do not cover the drugs. Representatives from both state programs declined requests to discuss their reasoning.

Officials from Oregon’s health plan say that physician-assisted death is just one of many covered medical options offered to terminally ill patients, along with hospice care and pain medications.

Wagner was told in 2008 that she had only a few months to live. She was prescribed a medicine that might have extended her life for a limited time, at a cost of $4,000 a month. Oregon’s health plan denied coverage, based on a policy that requires treatments to provide at least a 5% survival rate after five years.

Advocates said the case was blown out of proportion by the media and critics. The denial of the costlier drug wasn’t because of its price, but its low efficacy, they said.

“Barbara Wagner was not harmed by the Oregon aid-in-dying law. She was not harmed by the Oregon Medicaid system,” said Barbara Coombs Lee, president of the groupCompassion & Choices, which pushed for the law.

After the media focused on the case, the manufacturer of the drug prescribed by Wagner’s doctor offered her the pills free of charge. She died soon thereafter.

Oregon health officials subsequently halted the practice of listing lethal drugs as an alternative treatment offered to terminally ill patients who were denied other treatments under their coverage.

“I think the state Medicaid system learned to be a little more tactful,” Coombs Lee said.

Apparently learning from Oregon’s experience in Wagner’s case, California lawmakers included in the new legislation that insurance plans are prohibited from including in a treatment denial letter information on the availability of aid-in-dying drugs.

Christian Burkin, a spokesman for Assemblywoman Susan Talamantes Eggman (D-Stockton), who wrote the bill, said that “no one should be subjected to even the appearance or suggestion of being influenced to choose the end-of-life option.”

Some fear the pressures to choose assisted death could be more subtle.

Daniel Sulmasy, a physician and medical ethics professor at the University of Chicago, concluded in a 1998 research study that physicians inclined to conserve resources were more likely to write lethal prescriptions for terminally ill patients than those not concerned about keeping costs down.

That’s particularly worrisome, Sulmasy said in an interview, as California tries to manage the growing costs of Medi-Cal.

Under Obamacare, about a third of all Californians are now covered by the program, and its costs have climbed 74% since 2013 to more than $91 billion a year.

The federal government covers most of the costs but will begin shifting the expenses to the state after next year. California is already struggling with an $18-billion annual contribution, and that will rise in coming years.

Sulmasy also argues that as lethal treatments for the dying become more common, patients could face societal pressures from friends and relatives to unburden their caregivers or avoid racking up medical bills that drain family wealth.

But Oregon patient data have shown little evidence of that, says Coombs Lee, who was a nurse before she cowrote Oregon’s Death With Dignity Law. Of the roughly 860 people who have died in this way in Oregon since the law was enacted in 1997, 98% had state or private health insurance — and private plans tend to cover more end-of-life medical treatments.

Coombs Lee pointed to a new study that shows Oregon has some of the nation’s highest rates of hospice usage — and lowest levels of potentially concerning hospice care. She said that indicates, overall, that the state’s death with dignity law is improving end-of-life care.

“There’s no red flags,” Coombs Lee said.

Ezekiel Emanuel, an oncologist and bioethicist at the University of Pennsylvania, said that doctor-aided death for the terminally ill doesn’t offer insurers much opportunity to cut expenses.

“It’ll have an almost undetectable impact on healthcare costs,” said Emanuel, who helped draft the federal Affordable Care Act.

A 1998 study he conducted estimated legalization of lethal prescriptions nationwide would save less than 0.1% of total healthcare spending, chiefly because very few people would want them.

“It’s a law for the 0.1%,” he said.
Complete Article HERE!

October 19, 2015October 19, 2015

Life Is But A Dream – 10/19/15

What does “life is but a dream” mean?

Sometimes when something unbelievable happens, it’s so outrageous (usually in a good way) that it seems like you’re in a dream.

Life is what you make of it. So if you dare to dream, envision what you want it to be – it becomes your reality. It goes right along with the saying “You can be anything you want to be…”

In dreams anything is possible, impossible becomes possible. In life there are limitations with unseen forces that work along with our motives to confuse us more on the path to fulfillment. Life is but a dream – nothing is so easy as to dream it and make it happen right that moment without obstacles standing in way.

October 17, 2015

Before I Die: Why everyone’s talking

By Kim Mulford

Christine Corti knows how hard it can be to talk openly about death and dying. The 39-year-old graphic designer for Samaritan Healthcare & Hospice spends her work day surrounded by the discussion.

Her own mother scolds her when Corti says someone has “died.” Her parents are more conservative than she is, more private, more dignified, she explained.

“They didn’t grow up in the social media world where people are talking about what they ate,” said Corti, who also handles Samaritan’s social media. “You didn’t have intimate conversations about a lot of topics, including being sick and dying.”

But the discussion is more important now than ever.

Last year, Samaritan launched headlong into a project intended to break down those unspoken conversation barriers. It devised a campaign asking people to talk about their end-of-life care, using community events and games as conversation starters.

The work grew out of Samaritan’s own experience, as employees shepherded families making critical medical decisions for their loved ones, explained Joanne Rosen, who leads Samaritan’s initiative.

“Those decisions are heart-wrenching,” Rosen said. “We really believe that the best time to start having those conversations is early on. We suggest while we’re all healthy, not just when somebody is diagnosed.”

The need is clear.

According to a “Health Matters” poll conducted by the New Jersey Health Care Quality Institute and the Monmouth University Polling Institute, more than 54 percent of New Jersey residents have no legal documents expressing their wishes for end-of-life care. Another 38 percent have never talked about advanced care planning.

But people should make that conversation part of their routine health care, even when in their 20s, said Dr. Stephen Goldfine, Samaritan’s medical director.

“If you start having these conversations, it normalizes the conversation,” Goldfine said. Starting in 2016, physicians will be reimbursed for having that conversation with patients, which Goldfine called “a big step forward.”

Often, medical care is provided without knowing what the patients’ desires are, he explained. Decisions are often made when patients aren’t able to make them. That could mean a person’s life is extended through aggressive interventions, such as long periods spent on breathing machines, against their wishes.

“Just because we can do something, should we do it?” Goldfine asked. “For physicians, as we have more and more interventions, it becomes harder for us.”

Everyone needs to define his or her own quality of life, he explained. A self-defined “talker,” Goldfine said if he can no longer have a rational conversation with his loved ones, he doesn’t want aggressive care to extend his life — “I just want to be kept comfortable.”

Getting young people to talk about death isn’t as hard as one might think. That same “Health Matters” poll found 73 percent of respondents said they are comfortable with the idea of aging and death, and start thinking about it as early as age 30.

In some circles, it’s even earlier.

For the past nine years, Samaritan has helped Moorestown Friends School offer a semester-long course on hospice care. And though the class delves into difficult territory, it’s become a popular elective, explained Priscilla Taylor-Williams, a teacher who leads the religion department at the school.

“I think in some ways, it’s kind of a relief to be able to ask the real questions, and share some concerns,” Taylor-Williams said. “I think it helps that all of the adults who talk to them are comfortable. That’s the huge piece right there. … We are not afraid of this conversation.”

And it’s not like teens haven’t encountered death in their own lives. Indeed, the course was launched after the deaths of a teacher and a student. After taking the course, some students have used what they learned in their own families, Taylor-Williams said.

“I know kids talk about it,” Taylor-Williams said. “Most teens I know have lost someone by the time they’re in these high school years, or they’re watching someone go through some pretty serious illness in their families. I think it’s helpful to have a way to talk about it.”

Corti, the Samaritan graphic designer, thinks younger people are more open to a discussion about end-of-life care. She suggests making it a part of casual conversation, when out to dinner or in a car ride.

“Just put little droplets of those thoughts out there,” Corti said. “It just might help open that conversation for the next time.”