The Cost of Hope

Friday, June 08, 2012

Amanda Bennett, an executive editor at Bloomberg News and the author of The Cost of Hope: A Memoir, combines her family's personal story of her husband's fatal illness with her reportage on end-of-life issues.


Amanda Bennett

Comments [55]

John from NYC

Al brings up a good point about the quality of life. I had a family member who never made it home after heart bypass surgery. To endure 6 months of hospital/ nursing home transfers back and forth was a nightmare. The surgery team on Staten Island wanted little to do with me after the surgery.

Jun. 08 2012 03:09 PM

Re: why do large corporate employers (such as Bloomberg) often self-insure their employee health benefits?

There are several financial advantages that large corporations reap when they self-insure their employee health benefits but among the most important is that under the Federal ERISA law, self-insured employers are exempt from state-mandated health insurance benefits. For example, many states require commercial insurance plans to offer coverage for fertility problems or relatively generous mental health benefits---self-insured employers can save lots of $$$ by not offering such benefits. In addition, self-insured employers with relatively young, healthy workforces (e.g., Apple) don't have to pool insurance risk with employers who have older, less healthy employees (e.g., General Motors) which also saves them lots of money.

Jun. 08 2012 02:59 PM
DTorres from Nathan Strauss Projects

Mrs. Amanda Bennett and her husband, faced this with tremendous courage,
grace. I wish to thank Mrs. Bennett for making their fight public,
in the book, The Cost of Hope and exposing the insanity of our healthcare. system.
Even though this was very personal for her, she still managed to look at
the whole thing with a cold eye and explain it.
Thank you.

Jun. 08 2012 01:49 PM
MikeC from Manhattan

Health care is an economy, and eco system and because we do not realize that, because we think it only generates debt and not revenue. As Grover Norcrest so wrongly applies to taxes but is really a good analogy here Health care takes money from one part of our national economic lake and pours it in other parts of the lake. The great thing about it is it is all economic activity HERE! All those billions of dollars are spend for the most part on goods and services (jobs and incomes all of which are taxed) here in the USA. Cant any one see that ?

Jun. 08 2012 12:13 PM
John A.

"The villain is government."
I believe American medical care is larger than the government Both in terms of money moved and people employed. It's its own government and that is the villain.

Jun. 08 2012 12:08 PM
MikeC from Manhattan

No Jgarbuz T bills are issued even when there is a surplus and there is no debt. Giving a secure place for money to go is one of the things that a government with a world class banking system does in this century. When you are the world's reserve currency it is your obligation. It has nothing to do with a "need to borrow" because the USA spent all it's pennies and now has to beg China for money. Without US trade, China would have no dollars to buy the so called "debt" as you call it from us. You really do not understand how this all works. just reread my previous comment and look a the "made in China " label on the computer keyboard you are typing on and realize that it was made in china by choice, not by necessity.... and the dollars you paid a Chinese company to make it are safely stored in Federal Reserve vaults and ledgers. As the world's top military power, no foreign power can really dictate any economic terms to us. Unlike the Europeans and the USA in the 19th century, they have no military to collect any so called "debt"

Jun. 08 2012 12:07 PM
Brian from Hoboken

If you look at what pharma spends in R&D and what makes it to market, it comes out to about $800,000,000 to $1 billion per drug. Obviously not every drug is an allergy med, or cholesterol drug, that have enormous patient bases. Many are highly specialized drugs, such as an oncology drug for a rare cancer that may only affect 10,000 people per year. Certainly, you can't simply divide the $1 billion by the number of patients to arrive at a price.
Large pharma companies use sales of more common drugs to offset costs associated with niche products. So the cost of a very successful drug like Lipitor allows a company to bring to market a rare cancer drug.

To the Commenter re: every minute of life being valuable- you are right. But at what cost? $100,000 for your 90 year old mother to live another few weeks, or use those funds to help a child who needs an organ transplant an will live another 60 years or more? These are the real questions that many of us are not prepared to discuss intelligently "kill grandma, death panels, etc".

Jun. 08 2012 12:01 PM
MikeC from manhattan

We can "afford" Health Care. Period. That means You and I, your parents and mine your children and mine. All of us getting the attention and care that we deserve as a human right, from each other by each other. To argue that it "costs too much" is only indicative of ignorance about how a society establishes priorities and maximizes it's economic efficiencies, or to be more sinister, an indication that the doubter is a cruel and selfish individual who takes pleasure in distinguishing them selves from others by having "access" where others are denied.

Jun. 08 2012 11:59 AM

Wow! So when you have a health care system that runs on profit you will run into great situations in your own healthcare journey if you have great insurance? Didn't see that one coming...

Jun. 08 2012 11:58 AM
jgarbuz from Queens

To Mike C

The Chinese buy our Treasury bill, i.e., our national DEBT. And part of that debt grows because we now buy so much from China, which certainly did not do until after 1979. But nothing wrong with that. What is wrong is that we are living and even dying above our means, because we thought we could borrow forever. Our standard of living is falling, so that means our standard of dying has to come down too. That's my main point.

P.S. Nixon went to China to get their help to extract ourselves from Vietnam.

Jun. 08 2012 11:56 AM
janet from manhattan

It is interesting that the option of hospice care did not arise during this very important and poignant discussion. Hospice and palliative care offer a humane and sensible, and much less costly set of services not only to terminal patients, but to those who love and care for them. The omission of this in your broadcast reflects the wisespread under-utilization of hospice services, and the avoidance of its discussion as a reasonable choice between health care professionals and patients and families. This is what Republicans have labeled "death panels," a very perjorative and incriminating term which disguises the potential value of much needed education and counseling.

Jun. 08 2012 11:52 AM
MIke C from Manhattan

to jgarbiz The US is not "borrowing" money from China. China has no better or safer place to put its dollars earned thru trade with the USA than the USA.
China understands how that trade has enriched them. It was all part of the deal that Nixon brokered way back in the 70's. This is the way it is supposed to be... that was "the deal". A strong, semi capitalist China that is all for market economies and capitalist expansion and in return China gets "dollars" to spend and pass along to the rest of the world (particularly Africa at the moment) and feed the world economy after being some what recycled into Chinese Yuan
The borrowing analogy is wrong, wrong, wrong! and it is perpetuated to manipulate your understanding of politics and the world economy

Jun. 08 2012 11:49 AM
Brian from Hoboken

As much as I would rather personally die in a hospice setting, part of me is selfish and thinks that I should get what I paid for. I am a healthy 36 year old marathon runner paying very high premiums for basically nothing. If I get cancer like the guest's husband, I am cashing in those years of premiums. Why should I be denied care after paying all these years?

Oh well, it's not like I am going to see any of those Social Security dollars in my retirement either. Guess my generation is up a creek.

Jun. 08 2012 11:48 AM

Sooo...let's get this straight:

If you're rich or upper middle class with a fancy health "insurance"® policy, everything is fine???

Jun. 08 2012 11:47 AM

Two points -
I had a 25 week old baby. She was in the NICU for 3 months - cost was over $300,000. When I was pregnant with my second child, I was prescribed progesterone injections to help delay premature birth. Insurance would not cover. When I asked them why not (at $300 a shot)they basically said it's more cost effective to take the risk that I won't have a premature baby...(which I did end of having)

Secondly, I have a client called Fair Health. They are a non profit that gets information from the insurance companies and acts as an aggregate to show costs of procedures. They have a consumer site so consumers can find out how much a procedure should cost in their area. I hope this site helps consumers understand some of the costs being billed to them.

Jun. 08 2012 11:47 AM

Being listening to your guest, Amanda Bennett, and I would be interested in learning if Ms. Bennett during all this process with her husband's illness and treatment, did she also included and consulted with their family spiritual guide- Rabbi, Priest, Minister, Iman? It is unfortunate how these days is all about the science shortchanging the difficult conversation of "end of life" issue. Families rarely consult their spiritual guide. Doctors also feel very uncomfortable having a spiritual/religious representative as part of the Health Care Team. Thanks you. Rev. Eddie Jusino, Pastor, 1st Presbyterian Church of Freeport, NY 11520

Jun. 08 2012 11:47 AM
jgarbuz from Queens

The villain is government. Health care should have remained a private business, and people should have had to live more modestly and save for their later health needs. The intervention of government into health care is why we have this mess. People willing to buy SUV's and big McMansions wouldn't put aside a nickel to pay for their own health care. That was the problem.

Jun. 08 2012 11:46 AM
John from NYC

These hospital mergers seem to just produce highly paid hospital administrators. Why does North Shore LIJ need to have high salaried administrators for each hospital? All information is available from the Charities Bureau online of the NY State Office of the Attorney General's Office. The tax returns which are filed report some significant costs for administration for each hospital. This must be the status for other hospital systems as well.

Jun. 08 2012 11:45 AM
mc from Brooklyn

She just put her finger on it. "Who's in charge?" In her husband's last days there was a barrage of tests and interventions, even though the professionals themselves had concluded he was dying. This is the what needs to change. She said it all in the word "coordination."

Jun. 08 2012 11:45 AM
Vin from Queens

I hope one day Americans stop looking at the HMO issue as a fiscal problem and start looking at it for what it is - corruption. It's the same old story - a handful of deregulated wealthy people sitting outside of the eye of the media setting up incredibly high fee's for their own persinal gain.

Jun. 08 2012 11:44 AM
Karen from NYC

Reading the "die within your means" comment, I see that I am right: this argument is really about whether to pay for treatments for the middle-class and poor. Those of us who cannot afford to pay for life, will die.

My mother died at 90. Every minute of her life was valuable. Should Medicare not have paid for treatment during her last illness, on the theory that she'd already lived long enough?

This is a frightening discussion

Jun. 08 2012 11:43 AM
Donna from Montclair

I am currently recovering from surgery I had yesterday, for a broken leg that occurred six months ago. At that time I had no insurance, I was laid off and did not qualify for charity care because I owned a house. It took me three weeks to see a doctor, because I was paying cash. I was quoted from $300.00 to $3000.00 for an MRI. I finally got a job and have just had the first of two surgeries (I now need two because the leg healed so badly). These two surgeries plus physio therapy will cost more than $100,000.00. I did get quotes from Mexico ($8000.00) India ($6000.00) and Canada ($15,000). I did qualify for SSi after six months. The first thing I will do when this is over, is return to Canada, where there is a system that protects everyone.

Jun. 08 2012 11:43 AM

Please read Ken Murray's essay "How Doctors Die". As a physician myself, I was not surprised to read that, as a group, physicians often opt for less, rather than more care at the end of life. Those of us who witness what happens in the ICU, who feel compelled to "do everything" when patients ask, even when we know it to be futile and painful, choose not to expose ourselves and our families to that ordeal. We need to find a way to have people confront and discuss these issues in a rational fashion before they are in the middle of the maelstrom.

Jun. 08 2012 11:43 AM
Truth & Beauty from Brooklyn

What bothered me about my father's final illness was that although he was actually in the hospital for the final 5.5 weeks, there were so many things that the hospital did not provide, and the lack of common sense was appalling. I brought Slim Fast at my own expense because the Ensure they were giving him was ridiculous. They couldn't figure out on their own not to fill him full of opiates during the day. I insisted they give him Tylenol during the day so he could be lucid. A few more examples exist, but they make me wonder how they could generate such great expense without providing a good quality of care.

The last time I was in the hospital, my roommate needed a procedure for which she had to take a medication that nauseated her. Why couldn't the doctor just prescribe an anti-emetic with it? It's insulting to the intelligence of the average person. All that money for incompetence.

Jun. 08 2012 11:42 AM
Jaz-Michael King from Valley Stream

Clear language helps the debate:

Cost: Cost of labour, equipment, medication, i.e. cost to produce/perform.

Charge: Retail "sticker" price, only paid by uninsured and out of network portion. Charges are often made up and blindly adjusted for inflation over many years, leading to nonsensical charges.

Rate/Price: the amount most providers would accept for payment. Often tied to a Usual and Customary Rate determined by analysis of myriad claims in a certain area (e.g. ZIP code)

Charges: Completely fake price used for cash payment, uninsured, tax benefit ("charity care" is provided at retail price).

My point: for the most part insurance doesn't get you negotiated rates, it gets you the clout to demand payment be made at Usual and Customary rates. The sticker price is hopelessly not reflective of cost, and is coming more and more to light as more people cover a portion of each encounter. I work almost exclusively on health care transparency and simply put we need more people *demanding* the price before consumption. Until the "market" demands it, the market will not provide it.

UCR is now available from FairHealth via the Cuomo/Ingenix settlement (I am unaffiliated with FairHealth).

Jun. 08 2012 11:42 AM
Mike C from Manhattan

The Cost of Hope? or the Priority of Hope? The "costs " are arbitrary numbers dictated to us by private companies, and other profit driven entities. These are not the true costs of health care. We all obsess on the "cost" of health care as if it is a black hole that emits no light. Every single step in the health care eco system is subject to taxes and has secondary economic ripples that are positive and enrich our lives and economy. This is as much a part of our life and economy as the trillions of dollars we spend on sugar water and wasted military expenses directed at enemies real and imagined. TO ask these questions is to undermine compassion in the favor of gluttony, and violence. End of life care is people intensive. People intensive means jobs , and lives and you and I. It is all a matter of perspective and you are looking from the bottom up.

Jun. 08 2012 11:41 AM
Karen from NYC

It's true that cancer treatment is expensive, as is end-of-life treatments: but who is counting the people for whom such treatment works? By definition, if its end-of-life care, the patient died. What about those who did not die? Is this all about money? Isn't my life important? I am 61 years old, and very worried that, when I need care, that care will be denied due to a calculation that "it's not worth it." My friend's Mom lived well beyond the median period with Stage IV breast cancer. She was in her seventies. Should she have been denied treatment?

Jun. 08 2012 11:41 AM
Kim B

I have a chronic illness. I have private health insurance. But mostof my docs do not accept insurance...I have found that my doctors who do not accept insurance are more willing to listen to me and discuss cost options with regard to testing and procedures than doctors who do accept insurance.I pay more up front, but we try other methods for testing and monitoring before ordering expensive unnecessary tests which sometimes do more damage than good.

Jun. 08 2012 11:41 AM
mc from Brooklyn

There is no clear villain. We have medical providers who are paid per service which gives incentive to do too many services. We have the AMA which feared "socialized medicine" and unions which supported single payer or nothing. We have insurance companies which use blunt instruments to determine what treatments are necessary. Only a sea change in how medicine is practiced will turn this worm.

Jun. 08 2012 11:41 AM
Jim from nj

The guest's experience of not being denied drugs or coverage, is different for the every end of life care case (100s) I'm aware of.

Jun. 08 2012 11:40 AM

Re: Chemo treatment costing $25,000-30,000 per infusion...

Can someone in medicine or pharmaceuticals call in and explain HOW a single dose, even of 4-5 drugs together, can possibly cost that much???

I know it to be true, from my own relative's experience. But why?

Jun. 08 2012 11:40 AM
jgarbuz from Queens

Can the US continue to borrow a $160,000 from China to keep each 95 year old alive an extra year? I say you have to live within your means,and die within your means.

Jun. 08 2012 11:38 AM

Do health insurance serve any useful purpose. Today I found out they don’t even pay the bills?!
How much do all the insurance executives and their support staff make. What % of this scam is their take?

Jun. 08 2012 11:36 AM
Laura from UWS

Wondering if the author has read the cover story in the Atlantic titled How the Health Care System Killed My Father. It ran a couple of years ago and offered a fascinating left/right solution to our health care cost crisis.

Jun. 08 2012 11:36 AM
mc from Brooklyn

The solution is not to put the onus on the individual patient. Yes, the patient should be empowered to make smart choices, but most of us need to trust the medical professionals to tell us what treatments we need.

Jun. 08 2012 11:35 AM

I wonder about Mr. Bennett's quality of life for his last year or two?
Is it worth living an extra year if you spend that year feeling horribly ill from the disease and/or the treatment?

Jun. 08 2012 11:35 AM
MichaelB from Morningside Heights

The last caller -- the doctor with 12 year's practice... made a crucial point in passing that most people don't realize...


I don't recall the details, or how old this legislation is, but perhaps some other listeners can add detail to this important point.

Jun. 08 2012 11:34 AM
Sheldon from Brooklyn

Health "insurance" has always been a scam. It's parasitic middlemen who have congress in their pocket. That's why "Obamacare" or any other reform has been a "threat"....

Jun. 08 2012 11:32 AM
mc from Brooklyn

Sounds like her company is self-insured. Many large employers do this because they think it will give them more control over the costs. Unfortunately, the cost of care is the cost of care. Admin doesn't add all that much.

Jun. 08 2012 11:32 AM
Robert from NYC

Just 2 weeks ago I finished 7 weeks radiation and 2 weeks chemo therapy for cancer treatment and the bills are just coming in. I was just taken aback and as your guest says, I don't get it either. This is in no way the 7 years she and her family had to deal with but just within the 7 weeks just so recently the same insurance company is paying different rates for the same treatment, med, whatever. I don't even know how to classify many of the items on the list.

Jun. 08 2012 11:31 AM

I don't think employers should be required to provide health insurance. Americans shouldn't have to depend on employers for this basic need; health care should be affordable enough that we can buy it ourselves.

Otherwise, I am generally a supporter of Obamacare...given that Medicare-for-all was not politically possible at this time.

Jun. 08 2012 11:31 AM

Brian, why would you assume that insurance companies would make decisions based on market forces????

Are you talking about the companies' internal forces, e.g., bargaining for highest bonuses, lowest expenditures per patient, etc.????

The companies cry "market forces" but real life forces - shareholder scrutiny does not really exist, directors are friends of the CEO or fund managers/proxies who have conflicting interests {return to beneficiaries, access to company execs, or on interlocking boards across more than one industry}.

Please remember that "The Solid Gold Cadillac" movie was a fantasy even before it was staged or filmed.

Jun. 08 2012 11:31 AM
John from NYC

Your guest commented about what gets lost in the care of a family member. I believe the trend toward the merger of hospital systems (see North Shore LIJ and takeover of Lenox Hill and other hospitals) is a real concern for patient care. I understand the need for cost control but the consolidation of these healthcare systems seems to lose sight of the patient. Having experienced a series of admissions and discharges for a family member, why does a new admission start the process anew without any conideration of prior medical history for the same hospital?

Jun. 08 2012 11:31 AM
Sheldon from Brooklyn

"Timely" cover on the cover of this week's Time magazine.

Jun. 08 2012 11:26 AM
John A.

A long haul to convince me that variable pricing isn't just corruption.

Jun. 08 2012 11:25 AM
sclark from nj

This "cost" is exactly why if I ever get a serious cancer, I'm NOT fighting it. It's a ridulous sum in both $ and quality of life.
I've watched an uncle, two aunts and a family friend fight lung cancers, brain cancer and cancer of the appendix. Their life spans may have been slightly shorter but with pain management, they may have had a better life quality; better than sitting in waiting rooms, recovering from aggressive surgeries and chemo treatments.

Jun. 08 2012 11:24 AM
Susan from Upper West Side

So, I have a question for Amanda Bennett about whether she has explored the medical costs of trying to generate the "theoretical child" versus the costs of actually caring for "real children" who are already born. In particular, the issue I find problematic is that many mothers who are plugged into the fertility treatment industry are being pushed to start treatments for a "theoretical second child" long before it is healthy for them and their "real first child". The first child is often weaned too early and their mothers then become preoccupied with expensive treatments when the first baby is really at an age when they need more attention from their parents. At what cost is this hope for the theoretical child versus the first child and even for other children who are getting inadequate medical care because their parents can't afford it.

Jun. 08 2012 11:22 AM

First PTA funding of school activities (see other segment), now medical costs have to fit into the "32-ounce-cup-of-soda" paradigm? "Too much soda for you!"

Jun. 08 2012 11:22 AM
sean from brooklyn

My mother died of PSP and did not fight, cause she was a nurse and knew where it would go. She spent her last year with home hospice care. They were amazing! Mom taught me a great lesson on "how to die".
Medicare did waste tons of money thought. Any pills she got were overnight fed exed. I know that costs $60 a pop when I could have walked up the street and picked them up.

But ignorance is the worst part of it. We would have made horrible choices if my mom did not make them for herself. People in healthcare know so much more.

Jun. 08 2012 11:21 AM
rachel from Manhattan

How would Ms Bennett have felt at the time if there were someone else deciding what care her husband was receiving?

Jun. 08 2012 11:21 AM

Caring for terminally ill people seem to be helpful as a scientific experiment.
This person might not have made it but maybe the next one will have a better chance.

Jun. 08 2012 11:19 AM
David from Fredericksburg, VA

It was mentioned that Ms. Bennett's husband was 67. I'm guessing he was on Medicare when he passed away. The dirty secret about Medicare is that it doesn't cover the cost of care - the difference has to be made up from patients with private insurance.

Just another hidden tax via subterfuge.

Jun. 08 2012 11:18 AM
Ian from Manhattan

Don't you have to add insurance premiums to the $9,000. out-of-pocket costs?? Without paying premiums, you don't have insurance.

Jun. 08 2012 11:16 AM
John A.

So painful hearing these details.
Still, cleansing power of sunlight on the hidden world of rodents.

Jun. 08 2012 11:15 AM
Jack Jackson from Central New Jersey

$9K is not insignificant...

Why shouldn't Americans feel ripped off by the healthcare system when these tiered pricing schemes are rampant. It has institutionalized "Who you know" rather than "What you know".

I am sick of it but will probably die sooner than I need to because of it.
The public option is the only sane way out of this mess.

Jun. 08 2012 11:13 AM

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