Funeral Homes Should Post Prices Online, But They DON'T !!!!

Philadelphia Inquirer, Wednesday, March 30, 2016, Page A10, OPINION:

Philly funeral homes should post prices online

By Rachel Zeldin

Planning a funeral is extremely difficult, and not just because someone you love has died. The process is chaotic and time-consuming, and having many funeral homes stuck in the pre-Internet age doesn’t help.

If you are like most people, you have never purchased a funeral before, so you have no clue what’s involved. You rarely know your legal rights, the full range of options, or what you do and do not need to buy. Chances are you’ll use a funeral home your family has used before — even if you didn’t like it — or the one nearest your home.

Most people will walk into a funeral home’s for-profit showroom and say, “What do I need?” And because they’re nice and you’re grieving, you believe them when they say, “We’ll take care of everything.” And, chances are, you will naively purchase whatever they suggest.

I know this because my family was one of those consumers back in 2011, passing around the hat to pay for Uncle Rafe’s $10,000 funeral and then for my grandfather later that year.

This process can work out fine, but it doesn’t always. Case in point are the families that unknowingly use funeral homes that don’t keep up with their licensure requirements — or, worse, are legitimately out of business but continue to operate in their communities anyway.

At this point, you may be wondering, what does a valid license for a funeral home or funeral director even mean? Does the license actually protect the consumer? Not really. Pennsylvania doesn’t provide enough resources to actually inspect and oversee the more than 1,600 funeral establishments in the commonwealth.

But even when dealing with reputable, licensed establishments, here’s the real problem: Consumers are stuck researching and organizing an event with an industry that is stuck in 1984.

In 1982, the federal government recognized how vulnerable funeral consumers were and passed a set of laws — called the Funeral Rule — to protect them. Among the protections: Funeral homes must have a general price list that itemizes the costs of all products and services, and they must give a copy to consumers before discussing funeral arrangements. Progress, right? This even standardized pricing to a certain extent, but it also allowed funeral homes to charge a catch-all, non-declinable basic service fee.

Another major flaw is that the rules, passed in ’84 and revised 10 years later, reflect the shopping methods of their time: in person and by phone.

To this day in Philadelphia, you are lucky to find a funeral home with a decent website and even less likely to find one that posts its prices online.

In 2015, the Funeral Consumers Alliance of Greater Philadelphia collected price lists from 86 of the 137 Philadelphia funeral homes through a yearlong effort of calls, emails, and follow-ups. Shockingly, what we learned is that the price of direct cremation ranges from $700 to $4,465 — for the same thing. Embalming ranges from $293 to $3,000. (Of course, the skills of embalmers vary, but those skills are not tied to the prices they’re charging.) The average non-declinable basic service fee is $1,876; that is just the base cost of doing business with a funeral home when you haven’t even purchased any actual services or products yet. (The full survey results are at FCAPhilly.org.)

In a nationally publicized 2015 report by the Funeral Consumers Alliance and Consumer Federation of America assessing ease of access to funeral pricing information, Philadelphia funeral homes proved to be the worst in the nation. Only nine of the 15 surveyed had websites, none had prices online, and three refused to provide prices at all — a violation of federal law. Worse, to obtain a copy of these price lists, it took a minimum of three calls before the information was sent over — by fax.

Hey, funeral homes! How about entering the 21st century and putting your prices online?

Despite multiple requests from consumer groups, the Federal Trade Commission has not sought to update the federal rules. Beyond those rules, most funeral regulations are enacted on a state-by-state basis. So unless lawmakers in Harrisburg take action to require that price lists be posted online, consumers are stuck calling or visiting each funeral home they want information from.

California recognized the difficulties for consumers and now has a law requiring funeral homes with websites to list the goods and services they offer and include a statement that their prices list is available upon request or via a link on the home page.

The effect? In the same 2015 report, 85 percent of the funeral homes surveyed in Orange County, Calif., posted their full price lists, making it exponentially easier for local consumers to do their homework before stepping foot in a funeral home.

Though it’s still not as easy as buying shoes online, it is better than what the rest of the country experiences when shopping for a funeral. California has provided an easy, consumer-friendly measure that allows consumers to educate themselves and protects them from overspending and working with illegitimate businesses.

If the federal and state governments won’t follow California’s lead, it’s up to consumers to improve price transparency and comparison efforts. Call your local funeral home and ask, “Are your prices online? If not, why not?” Let me know what they say.

Rachel Zeldin is the founder and
CEO of I’m Sorry to Hear — Funeral
Planning Online
(www.imsorrytohear.com), a Project Liberty Digital Media incubator company housed at Philadelphia
Media Network, and a board member of the Funeral Consumers Alliance of
Greater Philadelphia. rzeldin@imsorrytohear.com

Say the names of loved ones, and remember, always

By Sally Friedman

Hymen Schwartz

For the first awful days after my father died many years ago, people around me had various ways of dealing with my loss.

Some never once mentioned my father when they visited to pay condolences. They mentioned everything else, including, as I recall, the weather. But never once did they speak of the man I was mourning.

Others did something I will never forget and for which I will always be grateful:

They allowed me the luxury of talking about my dad.

They mentioned him by name.

They asked questions.

But in general, ours is such a peculiar culture when it comes to death and loss. While we speak of the unspeakable on lurid talk shows — and films leave absolutely nothing to the imagination — death is the ultimate cultural taboo.

So we dance around it, deny it, avoid speaking of it.

And when we are faced with those who are grieving, we don’t know what to do or say. Like those infamous experimental rats darting about in their mazes, we seek a safe corner, at least in symbolic terms.

In Judaism, we “sit shivah.” We welcome visitors, offer food, and theoretically find comfort from them and with them.

But I have been to shivahs that felt so much like parties, with laughter and chatter and all the social trappings, that I wanted to bolt. It felt so wrong.

I also have been to shivahs with deep and powerful meaning, with prayers and remembrances that have felt so right.

And then there’s the time limits we impose.

Grieving, our culture seems to command, is finite. It has a starting point and an ending point. And if we indulge those who mourn, we indulge them on a schedule.

The general grieving license seems to run out in about a year. One year!

One Thanksgiving.

One marking of the birthday of the one we loved who is gone.

One spring.

One fall.

Enough? Of course not.

Forever, for some of us, is still not enough.

I remember visiting a friend who had lost a beloved son and who saw to it that there would be no “allotted” time for her grief.

She was brave enough to remind us that, sometimes, she needed us to say his name. She was not about to let that curtain descend on his existence, as if he never was.

Her lessons stuck with me, just as the ones from another friend who had lost her husband after a long marriage.

How hurt she was when well-meaning friends urged her to start “getting over it,” to “move on.” But she was emphatic, and she let us know that, years later, there was still a dense cloud of loss.

Her message was that it hurt to bury her late husband’s memory in silence, because, as she expressed it, silence buries the dead again.

For years, I have marked the anniversary of both my parents’ deaths — my mother’s came decades after my father’s — just as I mark other personal milestones. And not all milestones are joyous ones.

I light a memorial candle and I cry on these days of loss — my father’s in April, just when spring bursts forth and nature sings; my mother’s deep in winter, when the Earth is without color.

I often need time to be alone. I remember.

And yes, I sometimes need to talk about my father and mother — and to hear them spoken of.

I cannot forget. I don’t want to forget.

So I talk about Lillian and Hymen Schwartz.

To my husband, my sister.

To my children and my grandchildren.

“Say their names,” Isometimes ask of them.

And I hope they do.

Sally Friedman is a writer in
Moorestown. pinegander@aol.com

Snoopy: "When I Die, I'll Probably Get the Smallest Room in Heaven!" Poor Snoopy !!

Poor Snoopy:  The Smallest Room in Heaven !!??

Do You Want To Know The Date Of Your Last Day On Earth? !! The DEATH Clock

Chestnut Hill Local, Philadelphia, PA:

Do you want to know the date of your last day on earth?

Posted on March 17, 2016 by Contributor

Local freelance writer and author Roz Warren is also a long-time librarian, so she knows just about everything. Before Google, there was Roz!

by Roz Warren

I recently turned 60, so naturally I checked in with the Death Clock.

The Death Clock, www.deathclock.com, which bills itself as “the internet’s friendly reminder that life is slipping away,“ is a website that promises to accurately predict your life expectancy. Not only can you discover your expected life span, but the site promises to tell you the exact day on which you’ll die!

You plug in some basic information about yourself. Height. Weight. Age. Smoking status. Mental outlook — are you an optimist or a pessimist? (Or, somewhat more mysteriously, a sadist?)

Then, presto! The internet tells you what your last day on earth will be!

In my case it’s April 1, 2056.

April Fool’s day! How appropriate is that for a humor writer?

“April Fool‘s, everyone!” I’ll cackle at age 101. “I’m outta here!”

Am I really going to live another 41 years? While it’s true that my dad lived to the ripe old age of 87, my mother died far too young at just 57. That I might come close to doubling her lifespan seems unlikely, but who am I to argue? Why not just go for it and see what happens?

On a slow day at the library where I work, I showed a co-worker how to consult the Death Clock. Although she’s 15 years younger than I, the Death Clock predicted that we’d die the same year.

Deb was flabbergasted. “This thing must be broken!” she protested.

The two of us, apart from our age difference, are quite similar. We’re both tall, lean non-smokers. The only difference? I’m an optimist, and Deb is a pessimist.

Which, apparently, is what will send her to an early grave. Then Deb decided to try a little experiment by changing her outlook to “optimistic.” Bingo! That one change added over a decade to her life!

“I can outlast you!“ she crowed. “All I have to do is become an optimist!”

“Good luck with that!” I said. As long as I’ve known her, Deb has been an “Eeyore” at heart. A consistently glass-half-empty person. Will she really be able to change? I hope so. But I wouldn’t count on it.

(And how ironic is that? The pessimist vowing to cheer up and the optimist doubting that she can.)

I was inspired to try my own experiment and see how much longer I’d last if I were a pessimist.

Only another 18 years.

And if I were a pessimistic smoker? I’d only have another 13 years left!

And what if I were a pessimistic obese smoker?

I’d already be dead!

Just kidding.

Obese, depressed, chain-smoking Roz isn’t dead yet. She’s got another couple of years to sprawl on the sofa, smoke and scarf down chocolate cake and extra cheesy pizza.

This is what the Death Clock teaches you. Even at age 60, you can tinker with your fate. It’s fun game, if a little ghoulish, to explore the outcomes of  alternate versions of yourself.

If you lose 20 pounds? You’ll add 10 years. Quit smoking, and you’ll add even more.

It’s just as entertaining to look up friends, co-workers and loved ones to see who is going to outlast you. The blithely incompetent colleague who gets on everyone’s nerves? Cheer up! She’s a smoker, so she’ll only be around till 2025. Your angry boss, the overweight sadist? Not to worry; he won’t be harassing you for too much longer.

And for the man in my life, who happens to be an optimistic smoker? If I don‘t want to outlive him by decades, I’d better redouble my efforts to get him to quit. (And while he’s at it, maybe I can get him to lose a few pounds.)

Consult the Death Clock. But be careful. Telling friends, family and co-workers when they’re going to die if they don’t shed their bad habits could prove stressful enough to take additional years off their lives.

It could prove to be bad for your health too. The one thing the Death Clock can’t measure? The danger that if you keep bugging everyone you know about its predictions, one of them might decide to prove the Death Clock to be dead wrong by dispatching you ahead of schedule.

Roz Warren (www.rosalindwarren.com) is the author of “Our Bodies, Our Shelves: A Collection of Library Humor.”

Walking Billboards For Unheard Patients

Patient advocate fights for access to digital records through her art

 Jayne O'Donnell, USA TODAY 9:30 p.m. EDT May 25, 2015

(Photo: Christopher Closson)

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Regina Holliday was a toy store clerk and preschool art teacher when her husband died of kidney cancer in 2009.

Despite her grief and background, Holliday has emerged as a colorful patient advocate with a command of electronic health record rules to rival any button-downed lobbyist.

The color comes in the form of more than 330 pictures she's painted on jackets to tell the stories of patients, doctors and others involved in health care. Those who get the free paintings agree to wear them to at least two medical conferences a year, which creates a "Walking Gallery of Healthcare" that 43 other artists have joined.

Holliday's art-based advocacy started as a Washington, D.C., mural about medical data access in 2009, in which she tried to make the case that patients and their families need early and full access to electronic health records. That's something Holliday couldn't get as husband Fred was moved rapidly between hospitals, rehab centers and hospice.

As doctors and hospitals fight to get rules relaxed to give them more time and fewer requirements, Holliday is on the other side pushing for the process to be sped up.

Some of those who wear Holliday's jackets are patients with chronic or fatal diseases. Others range from doctors to policy makers to powerful industry players. They include Karen DeSalvo, who heads the federal Office of the National Coordinator for Health Information Technology, Todd Park, the former U.S. Chief Technology Officer and Jonathan Bush, CEO of health IT company Athenahealth.

"It's a major labor of love," Holliday says of her painting.

And it's a way to give voices to people who can be overlooked in policy debates, especially on an arcane subject like digital medical records.

USA TODAY

Government backs down on some requirements for digital medical records

When Holliday first started going to medical conferences after her husband's death, she noticed there were no people who identified themselves as patients. So she convinced many of those willing to tell their private health stories to let her do so in art. The paintings show these patients' struggles with conditions including Lupus, cancer and mental health, an area where patients and their families have particular challenges getting records due to privacy concerns.

She could relate to all of them as "I'm a really regular person," says Holliday. Now, however, she's also a paid keynote speaker at health conferences and a policy wonk.

Fred was also a regular guy — and a father of two young sons — who spent years working in a video store while going to school. The year before his death, however, Fred got his doctorate in film studies and became a professor of film at American University. He was so proud, Holliday says.

He had been going to the doctor off and on for about six months for problems that turned out to be symptoms of his cancer. Still, he kept being prescribed pain medication. After doing her own research into what appeared to be something wrong with his spine, Holliday concluded something must be wrong with his kidneys and demanded an MRI.

At the first hospital, Holliday was told it would take 21 days for her to get a copy of Fred's medical records and 73 cents per page for the 162 pages. By that time, Fred was already in the next hospital and close to being sent to hospice.

Access to the records early would have helped the couple make better-informed decisions and allowed "us to see how extreme the spread of his disease was," says Holliday.

Now, she wants everyone else to have that access. Up against a powerful and well-financed industry, Holliday isn't about to give up. One of Fred's doctors called her "Little Miss A-Type Personality," for her pushiness in getting his records. So she put that on one of her jackets.

She's also a survivor. Her late father, an alcoholic, physically and sexually abused her when she was young and she made that part of her new memoir, The Writing on the Wall. "I wanted regular folks to know what it's like to be hospitalized without information," says Holliday. "If I explained what happened to me as a child back when we didn't talk about those things, I was hoping that people might see what feels like abuse in hospitals and would change things more rapidly."

Patient advocate Regina Holliday has done more than 330 paintings on people’s jackets to illustrate their lives and challenges with healthcare, especially access to their medical records.  Ted Eytan

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MAGAZINE

Do You Believe in Miracles? 

MARCH 11, 2016 – 5:05 AM – 0 COMMENTS

By KATY KOONTZ 

(Marc Morrison)

It seemed impossible. But the emergency room doctors were telling Christy and Kevin Beam that their 9-year-old daughter Annabel wasn’t hurt.

Annabel, who had tumbled headfirst 30 feet to the bottom of a hollow cottonwood tree on the family’s farm in Burleson, Texas, had no head injuries, no brain damage and no spinal trauma, the doctors said. No broken bones or internal injuries—only a few minor bumps and bruises. A concussion, at most.

Annabel had spent several hours inside the tree, most of that time unresponsive, as rescue teams strategized the best way to free her. When they finally succeeded, a helicopter airlifted her to a hospital, where doctors ordered numerous scans to assess her injuries.

Only the doctors couldn’t find anything. The next morning, they sent the third-grader home with her stunned—but grateful—parents.

But that was nothing compared to what emerged in the weeks and months that followed.

This hadn’t been Annabel’s first hospital trip. Four years before, she’d been diagnosed with two painful, life-threatening digestive disorders (pseudo-obstruction motility disorder and antral hypomotility disorder), requiring a regimen of 10 drugs daily, including antibiotics, anticonvulsants, prescription-strength laxatives, reflux medication and painkillers.

Every six weeks, mom Christy, now 43, flew with Annabel to Boston so a specialist treating her with an experimental drug could monitor the girl’s progress—although the grim truth was that there was no cure. The best they could hope for was that the drug would lessen Annabel’s symptoms, making life more manageable. The situation devastated the family, which included Annabel’s two sisters, Abigail (two years older) and Adelynn (two years younger).

Yet just days after Annabel’s dramatic rescue, Christy realized that her daughter hadn’t asked for her usual pain medication. And her once-distended abdomen had inexplicably flattened. In fact, Annabel seemed unusually carefree and happy. Almost . . . normal.

As the weeks wore on, and as Christy gave her daughter less and less of the once-vital medication, it became startlingly clear to her parents that Annabel was no longer sick. She was healed.

Today, more than four years after the December 2011 incident, Annabel still takes no medications and has no symptoms. Somehow, an experience that should have left her with serious injuries exacerbating her life-threatening disorders instead erased any trace of either condition.

To many, what happened to Annabel Beam could only be described as a miracle.

Who Believes?

Annabel’s miracle will be up on the big screen when Miracles From Heaven—based on Christy’s 2015 best-selling book and starring Jennifer Garner as Christy—opens in theaters this week. If it’s true that eight in 10 Americans believe in miracles—a statistic from a Pew Research Center study—there will be plenty of ticket buyers. Although more religious Americans believe than the nonreligious, more than half of those unaffiliated with a particular faith still say miracles are possible. In fact, belief in miracles is on the rise, according to best-selling author Marianne Williamson, known for her teachings on the Foundation for Inner Peace’s popular spiritual tome A Course in Miracles.

“People are evolving beyond strict adherence to a rationalistic worldview,” she says. “Quantum physics, spiritual understanding and a more holistic perspective in general have come together to produce a serious challenge to old-paradigm, mechanistic thinking.” In other words: “People know there’s more going on in this life than just what the physical eyes can see.”

Kate Bowler, Ph.D., of Duke Divinity School in Durham, N.C., and author of Blessed: A History of the American Prosperity Gospel, studies miracles and people who believe in them. She’s found that a very high percentage of religious people are convinced that God will make targeted or often random choices because God will heal or bless one person over another. Many such people try to figure out a formula for “what will reach into heaven and draw out some kind of blessing,” she says. “The truth is there will never be a formula, but people will certainly keep trying to find it.”

The Beams, devout Baptists, did believe in miracles before their daughter got well, but as Kevin, 43, says, he thought miracles “were possible—just not probable.” Annabel, now 13, echoes: “I knew they happened. I just didn’t think they would happen to us.”

Bowler’s research confirms that “almost everybody I talk to believes in some kind of relationship between their positive feelings and a supernatural result. Even if they don’t call it prayer. I think there’s a real openness and a sort of sense of wonder at the possibility of miracles,” she says.

Why Now?

“Obviously, people are looking for hope today because the world is so filled with fear and chaos,” Williamson says. “But something deeper than that is going on as well. We are looking for meaning.” Humanity has a deep, instinctive sense that life is about something more than just trying to consume, she says. “We’re either shutting down in fear as we have never done before, or we’re opening up to love as we have never done before. Our only choice now really is between an age of barbarism or an age of miracles.”

If the New York Times best-seller lists are any proof, people are choosing the age of miracles. Two best-selling books published last year—Imagine Heaven by John Burke and Touching Heaven by Chauncey Crandall, M.D.—each share stories of near-death experiences. In 2012, a trio of best-sellers (two by medical doctors) recounted miraculous (i.e., unexplainable) personal experiences. Eben Alexander’s Proof of Heaven tells how the neurosurgeon conversed with what he calls “the divine source of the universe” while in a coma caused by acute bacterial meningitis. Just when doctors were beginning to give up on him, his eyes popped open. Today, he’s completely healthy. Previously, the former Harvard Medical School faculty member believed near-death experiences were medically impossible.

In Dying to Be Me, Anita Moorjani says she learned life-changing spiritual truths while in a coma following a nearly four-year battle with cancer. Moorjani woke up—and was cancer-free when she left the hospital, just weeks after the day doctors told her family she would die.

While kayaking in southern Chile, orthopedic surgeon Mary C. Neal was pinned underwater for more than 15 minutes and drowned. Before she was resuscitated on the riverbank, she says she spoke with angels. In To Heaven and Back, she calls her accident “one of the greatest gifts I have ever received.”

One miraculous tale—The Boy Who Came Back From Heaven by Kevin and Alex Malarkey—turned out to be a hoax. Alex admitted he’d fabricated his experience after an auto accident that left him a quadriplegic at age 6 (but not before his and his father’s story was turned into a TV movie).

Doctors are often mystified by stories of unexpected recoveries, but not all are ready to declare them miracles. In fact, a current Yale study is looking at whether doctors of coma patients could have made mistaken prognoses. “We know that there are no true ‘miracles’ in medicine,” says David Greer, M.D., a neurologist at Yale–New Haven Hospital and one of the study’s main researchers, “but rather mistakes that are made by physicians who give an overly pessimistic prognosis.”

Jennifer Garner as Miracle Mom

What Does it Mean?

The Beam family receives emails from people all over the world who think they’re perpetuating a hoax, and from others who say Annabel’s story inspired them to deepen their faith. As for the naysayers, “I don’t feel like I have anything to prove,” Christy says. “The proof is right there. We lived it. It’s not a gray area. It’s black and white.”

Adds Kevin, “The big question is, what does it mean since it did happen?” Some skeptics, he thinks, won’t believe the story no matter how convincing because it threatens their belief that God doesn’t exist. He’s hoping at least some of them will reconsider.

Yet Bowler stresses—and the Beams fully agree—that believing in miracles and in modern medicine don’t have to be mutually exclusive. “It’s never like faith versus science. It’s always faith and science,” Bowler says. “For the most part, people are throwing everything and the kitchen sink at problems, and when it works no one’s going to complain. Some way or another both medicine and miracles will get the credit. People love their doctors and they love their God, and they will ask both for a lot of favors.”

“Hope and faith can be abused,” Kevin says. “Even though deep down we knew something major had happened, we also didn’t want to just say, ‘Take all Annabel’s medicines and throw them away.’ Over the course of four years, we had a lot of people who gave us well-intentioned bad advice to just claim that she’s healed because God doesn’t want any of his children to be sick. We appreciated the miracle, but still respect the medical profession.

“I would hate for somebody to misinterpret that message and say, ‘Well, I’m just going to pull all my kids off their medication,’ ” says Kevin, a veterinarian. “I mean, this was our experience but we also realize that’s not going to be the case for every single person.”

Why was Annabel healed while countless others haven’t been? “It’s not that God loves her any more than he loves them. It’s not that our family has done anything to deserve a miracle,” Kevin reasons. “This whole experience is just so phenomenally humbling because I remember that desperation of being a parent who would do anything to see my child get better. We experienced that miracle, but I also realize that not everybody will—and those are questions I don’t have a good answer for.”