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Lessons of a $618,616 Death
March 8, 2010 9:53 AM   Subscribe

Lessons of a $618,616 Death
posted by Joe Beese (74 comments total) 24 users marked this as a favorite

 
Is it time for our "health care is broken, no , politics is broken, no, it's all broken, this is a travesty" discussion already?
posted by cavalier at 9:57 AM on March 8, 2010 [5 favorites]


I had a lovely conversation with an exceptionally intelligent, 70 year old, woman this summer. One of the most remarkable things she said was "Americans will never solve the healthcare crisis until we get over our fear of death." She explained that it just wasn't fiscally sound to spend a tremendous amount of money extending the life of the sick and elderly a matter of a few months. It was a real eye opener, especially coming from an elderly person.
posted by nathancaswell at 10:02 AM on March 8, 2010 [36 favorites]


That's a heartbreaking article. I couldn't read it all.
posted by kalessin at 10:04 AM on March 8, 2010 [1 favorite]


i read this yesterday. it is a really good article.

she says several times that she doesn't know what the answer is or what she would do if she had to make decisions about someone else or their husband.

a friend of mine who works in hospice deals with this all the time. she and the staff have to help families understand that death is sometimes better than living when you are kept alive by machines and tubes and all of the diginity of life is gone.

i've reading a lot Kubler-Ross lately. really fascinating stuff, all of her books.

people who are dying should be allowed to die in peace without feeling guilty that they are leaving us and we should allow people to die in such a way, without wanting to keep them here only because we will miss them.

i watched my dad die of cancer on a hospital bed in our living for 3 years, beginning when i was 16. i really wish we would have handled it better and let him die much sooner. i remember seeing the EOBs for the insurance care, there was one bill alone i remember that over $200,000. thank god we had cadillac insurance at the time.

in the end, we all would have been a lot better had we accepted death as a part of life.
posted by sio42 at 10:11 AM on March 8, 2010 [9 favorites]


ack, many typos. sorry. living ROOM.
posted by sio42 at 10:12 AM on March 8, 2010


Is it time for our "health care is broken, no , politics is broken, no, it's all broken, this is a travesty" discussion already?

We The People are having this discussion in every lunch room, job site, left-ish talk radio station, and free newsweekly across the country.

They They Corptocracy are isolated from the discussion by wealth, privilege and police.

That's what needs to be fixed, essentially.
posted by clarknova at 10:13 AM on March 8, 2010 [9 favorites]


In reviewing Terence's records, we found Presbyterian Medical Center in Philadelphia charged UnitedHealthcare $8,120 in 2006 for a 350 mg dose of the drug Avastin, which should have been free as part of a clinical trial. When my Bloomberg colleague inquired, the 80% insurance payment was refunded. A small mixup, but telling.

In the midst of a paralyzingly terrifying trip through the health care system, it should be incumbent on patients and families to take control of and responsibility for their health care by comparing prices and making sure the insurance company isn't making any "mistakes"! HAMBURGER

This is so fucked up.
posted by rtha at 10:14 AM on March 8, 2010 [2 favorites]


My dad went into a allogenic stem cell transplant when he was 59, to combat chemo-refractory leukemia. He died as a result of post-engraftment complications. The total bill for the transplant: north of $350K.

If he had lived, it would have been money well spent. But it is impossible to see the endgame ahead of time. We had a 85% chance of favorable outcome, for chrissakes! When it was apparent that he wouldn't be recovering, we made our decision and let him go. Time elapsed from his re-admission to his death: 1 week, two days.

My father wasn't afraid of his own death. He was afraid for the people he would leave behind namely, my mother. She's still alive, but it's a close thing indeed.
posted by pointless_incessant_barking at 10:19 AM on March 8, 2010 [1 favorite]


Seeing this first hand with my mom. Five years of treating metastatic breast cancer. She's been on oral hormonal therapy, then oral chemo, Zometa throughout. She was doing really well on all of them too. No pain, little side effects, nothing really progressing. Hell, Zometa shows significant tumor shrinkage.

Then the traditional chemo started last April. Immediately the side effects hit her hard. By June, it was hitting her harder. Hair gone, thinner, just not looking good. By Nov, she looked completely different. She went from 140lbs down to 108lbs and going down every month. The oncologist said that she is running out of options, response rate is not showing, chemo is doing more harm than good. Now she has liver cancer and less than 6 months to live. She's bones, tired, sick of all of this yet my father forces her (and I do mean force) to go to chemo every week, etc. She wants to stop it. He says no. Cost and side effects are soaring (thank god they have decent coverage) yet dignity is nearly gone.

And now I wait and hear her say how she hates all of this and wonder when is it going to happen. I've put all of my life plans on hold--attending out of state weddings, vacations, etc are not in the cards because I don't want to get a call when I'm gone.

She really doesn't know what's in store for her once she stops everything. She honestly thinks she will fall asleep and not wake up---easy peasy. From everything I read about liver cancer, it's not going to be that way. My father is telling her (in their lovely dysfunctional way that they cope) that he's kicking her out--to die in a hospice care.

So add to the cost in dealing with the emotional side of things.

If only we can find a way to give people a dignified option of assisted suicide. I think we all rather her go out that way. For once she could be in control of her life in that ultra controlling house. I wish I could make it as easy as "go to sleep" for her.

Sad on all fronts.
posted by stormpooper at 10:19 AM on March 8, 2010 [18 favorites]


This was a really well-done article. It told a painfully human story while explaining the financial side that no one wants to think about.
posted by charred husk at 10:26 AM on March 8, 2010 [2 favorites]


Is it time for our "health care is broken, no , politics is broken, no, it's all broken, this is a travesty" discussion already?

Is it time for our "insert cynical, unproductive comment" discussion already?
posted by HP LaserJet P10006 at 10:28 AM on March 8, 2010 [5 favorites]


A friend of mine died two weeks ago. He was living on odd jobs in an old house converted to a rooming-house. He had little to no resources of his own.

In November, in too much pain to deal with anymore, he went to the hospital where he was diagnosed with a 'small' colon tumor. He was set up for Charity Care, stuff set up so he could get chemotherapy.

A month later, in greater pain and too weak to move, he went back into the hospital. The second doctor had him checked out. And found him with greater levels of colon cancer, and it had metastized to the liver. And his kidneys had shut down.

By Christmas he'd found out it had spread to his spine.

We, his friends, had to get together $800 to cover his cremation in order for him to be moved to hospice care.

It is possible that, with decent health care, he might still be alive. But we'll never know. Because there are people out there that don't give a good goddamn about people on charity care dying.

And if people don't care about that, why should they care about people whose debts go up?
posted by mephron at 10:32 AM on March 8, 2010 [41 favorites]


It was a real eye opener, especially coming from an elderly person.

IME old people are much more candid about this sort of thing than the young (an opinion perhaps colored by the particular old people with whom I've spoken).
posted by kenko at 10:34 AM on March 8, 2010


There's a podcast and some additional content available on the main version.
posted by rewil at 10:36 AM on March 8, 2010 [2 favorites]


A very close relative of mine is dying, was going to take her prescribed death with dignity suicide drugs (Washington State) last sunday, but woke up that morning feeling a little more chipper and in a little less pain than usual, so she decided to live for another week. A lot of things about what we are all going through are pretty astounding and intense, but just to keep myself on topic I'll say one thing that really amazes me is how hard she's had to fight and how much derision she's had to face for just wanting to die simply. But, she will, and now that all the proper people have signed off on her, she is free to do as she wishes. Last night she said that if Avatar won for best picture, she'd kill herself. It was awesome.
posted by Stonestock Relentless at 10:40 AM on March 8, 2010 [40 favorites]


Oh, stormpooper--I'm so sorry. I have no words.
posted by emjaybee at 10:40 AM on March 8, 2010 [1 favorite]


If you're a bit confused about the placement of this story in Business Week (I was -- it doesn't seem to be a natural venue for a story that seems at least partially positioned against Big Health business interests), it seems that Amanda Bennett is the magazine's News Executive Editor (which is implied by her mention of "a Bloomberg colleague").

In the magazine's media center, there's an interview with her (I haven't watched it; I'm on a Mac at work and their Windows Media/Flash interface isn't playing nice with OS X and Firefox); the intro text's lede is "Despite a cost of $618,616, it's uncertain whether the care prolonged his life."

I'm... not sure that this is what most people will take away from this story. The story I heard was about out-of-control expenses, inconsistent pricing policies, and a monstrously difficult decision; that lede seems to move towards "does medical care deliver value for your money?" which seems a little more apropos for Business Week, but odd in this context.
posted by Shepherd at 10:40 AM on March 8, 2010 [1 favorite]


My mom died of pancreatic cancer a couple of years back. She went through some stages of treatment but when it became clear that it was going to be a losing battle she decided not to pursue any further treatment other than whatever helped with the pain and other symptoms. She stayed in her apartment as long as she could and eventually moved into my brother's place for the last six months of her life. During the last month my brother and I take took care of her at his place. My sister would visit regularly. Other friends and relatives would come by also. A nurse would come by every other day to deliver morphine and check in on her in general. When she couldn't do it herself anymore we'd give her the shots.

My brother was able to use his vacation for this month (this is Germany where people get sufficient vacation for this). I had taken unpaid time off here in the States for this but my employer actually decided to pay me for the whole month and not even use my vacation days for it! (Thank you for the amazing support!)

Anyhow, long story short: we staid with her until she died. She seemed happy to have her family around her, we talked about so many things and she even had sort of a confessional where she talked about some things that she wanted to get off her chest. There was some misery in the end when she had trouble breathing but there was enough medication to help her at least to some degree.

It was one of the most intense experiences I've ever had and, strangely enough, one of the most beautiful also. Because it felt natural and had some sort of graceful ease to it. We all knew what was happening and she had as much company for this last leg of her journey as she wanted. When she finally died both my brother and I experienced a short but intense outburst of grief and loss but it passed very quickly. We miss her a lot of course but I think because we were able to be with her during this time and be part of her dying we were ultimately already at peace with it all when it happened and we're still at peace with it now.

I've seen other friends and relatives die but with my mother it was different. It all felt right. There was no trying avoid the subject, there was no tense and forced medical struggle to avoid the unavoidable, there was no religious nonsense sugarcoating reality. There simply was inner peace in the face of death and suffering. It felt like it all happened the way one would want it to. It felt dignified. I hope I get to go that way.
posted by Hairy Lobster at 10:40 AM on March 8, 2010 [21 favorites]


When I read stories like this, I think about my maternal grandmother, who died when I was 11. This was back in the 1970s, before living wills; the Karen Ann Quinlan case happened after this had already started. They told my mother that she should put her mother on a feeding tube after her stroke, that she would only last a week. My grandmother clung to life for close to two years. How many children in developing countries could have been vaccinated with the money that was spent on keeping my grandmother's unconscious shell alive for all that time?

I know the story was horrible but things are so much better now that we have living wills and the option to turn the machines off when we know it's time to let go, even if we come to that conclusion later than we might.
posted by immlass at 10:46 AM on March 8, 2010 [1 favorite]


It seems uniquely American to me that not only do we not have standard coverage that would prevent you from going to the poorhouse while trying to save a loved one who dies anyway, we also are not allowed to assist them if they want to try to have a little dignity in the end while not dragging the whole affair out into a long, painful, torturous, expensive war for nothing either. Thank you, capitalism and religion.

This is going to be another heartbreaker of a thread.
posted by nevercalm at 10:47 AM on March 8, 2010 [3 favorites]


Ugh, kidney cancer. My father-in-law died of kidney cancer in December. He went from diagnosis to death in about 2 months. They removed one of his kidneys, but did not get it all. It was a terrifyingly fast-moving disease.

That experience was really eye-opening for me. We were so lucky about so many things. The number one thing I'm thankful for is that we got the phone call that he wasn't doing well and were able to fly down to Florida and spend his last days with him. He was alert and clearly so happy to see us. The last food he ate was the broth from some homemade soup I made the first day we were there - he said it smelled so good that he just had to try some even though his appetite was gone.

The second thing I'm thankful for is that my sister-in-law is a nurse and was able to provide advice to him and my stepmother-in-law that was invaluable. At one point, they were going to take him to the hospital to get a catheter to drain the fluid that was collecting in his abdomen due to his kidneys failing. But my sister-in-law warned us that if we took him in, they might admit him, put him on dialysis, and he'd never come back out. He decided not to go in, and he died a day or two later. What do families do that don't have access to that kind of medical knowledge? It's so hard...

The third thing I'm thankful for is hospice. Thanks to hospice, my father-in-law spent his last days at home, surrounded by family and friends. We had a hospital bed delivered so he could be with us all in the living room (he couldn't navigate the stairs to/from the upstairs bedroom). He had morphine, although he wasn't in a whole lot of pain but the fluid build-up was very uncomfortable. We had oxygen for when his breathing got labored. And when he finally passed (literally two minutes after asking one of his daughters to come into the living room and repeat the joke she'd told earlier), we were able to call hospice and not have the trauma of an ambulance ride and the hospital and everything.

I don't know anything about the bills and the insurance and everything related to his care. But I do think that my husband's family was lucky to have the knowledge, information, and options to make choices that made the end of his life as good as such things can be.

On preview, I think our experience was similar to what Hairy Lobster describes -- it was so sad, but also peaceful and dignified.
posted by misskaz at 10:55 AM on March 8, 2010 [2 favorites]


The way we treat dying scares the hell out of me. Dying is inevitable, and torture is not, yet we leap to the latter to stave off the former. It's bizarre -- if we treated the other end of the trip like this, we'd have doctors in the pre-natal unit spending $618,616 trying to shove babies back in the womb.

Everybody dies, guys. Everyone. Maybe we should put the emphasis on how we die, rather than when.
posted by vorfeed at 10:55 AM on March 8, 2010 [11 favorites]


Emjaybee, thank you. I'm more upset that a woman who has had a very abusive marriage, a shitty family life, etc. is not only ending her life in a suffering way but more so that my dad can't have the soul to be more decent to her as she has 6 months left to live. It's beyond words sickening to me. I'm not asking for him to be all lovey dovey, but seriously, cut the yelling out and threatening to put her in a home. Some people just don't have decency, I guess.
posted by stormpooper at 10:55 AM on March 8, 2010


Thank you for the story, stormpooper. It raises the issue: I hope that people are paying attention to what the PATIENT wants, and not be all OMG you can't die because either I'll be sad or society says you can't die. I hope that all these decisions were made by both the author and her husband, not just her.

I'm guessing that as the baby boomers (who are used to getting what they want) age, they will start taking much more control over their deaths. My uncle used to claim that he "had" to call his father in law every day to remind him to take his medications; if I ever tried that with my mother, she would very swiftly go tell me where to shove it. It will be interesting to see who will fall into the "just let me die" camp and the "extend my life no matter what" camp. nathancaswell's elderly friend is right on: once we get over all these fears, we'll be able to look it in the eye and say yes, it's part of life.
posted by Melismata at 11:03 AM on March 8, 2010


if we treated the other end of the trip like this, we'd have doctors in the pre-natal unit spending $618,616 trying to shove babies back in the womb.

Actually we do treat the other end of the trip like this; it is very easy to generate a 6 or 7 figure NICU bill; some patients spend months there and get multiple surgeries and expensive technologies like ECMO used on them. But most of them do very well; others though require a lifetime of medical care and will never be a productive member of society.

This was a good article but only begins to describe some of the flaws in the American healthcare system.
posted by TedW at 11:05 AM on March 8, 2010 [2 favorites]


mephron, thank you. I have flagged your comment as outstanding.
posted by EmpressCallipygos at 11:06 AM on March 8, 2010


One of the most remarkable things she said was "Americans will never solve the healthcare crisis until we get over our fear of death." She explained that it just wasn't fiscally sound to spend a tremendous amount of money extending the life of the sick and elderly a matter of a few months.

I don't have the science at hand to back it up but I've heard it said that as little as sixty years ago, it generally took us six months to die. That is, the statistically average person would be living in relatively functional health, get hit by some malady (a cancer, a heart ailment, etc) and within six months would be dead.

Now, with the astonishing evolution of medical technology, that death generally takes six years. Not all of it sheer pain and torture, I'm sure, but even so ... ?
posted by philip-random at 11:14 AM on March 8, 2010 [1 favorite]


From the article:

Dr. Pierce prescribed Interleukin-2 because there were no other options. Injections of the protein, at $735 a dose, were intended to stimulate the immune response to help fight the cancer's invasion. The overall response rate was only about 10%. For most patients, Interleukin-2 did absolutely nothing.

This is utterly amazing to me. I did some reading on the web, and I know this is a very specialized drug, but what's the response rate of the placebo effect? 35%? How is something like this ever allowed to come to market? There's something about spending millions to make far more millions on something that only desperate people need and which can safely be said to rarely work that just blows my fucking mind. I had a woman I was close to (ex's mother) who was on experimental treatments that we were explicitly told by her drs would probably not work (and eventually didn't, per usual), and which are probably approved now and costing hundreds/thousands of dollars per treatment.

I said at the time that snake oil would probably have a comparable effect, and I stand by that.
posted by nevercalm at 11:15 AM on March 8, 2010 [1 favorite]


This is not to gloat - as I'm sure you're aware, but I figured I'd add a disclaimer in such an emotional thread - but to contrast:

I recently had a relative die of cancer after something like four years of fighting it. She is survived by her two young children and loving husband. Four years of cancer treatment is not cheap. I'm sure my family would have pitched in to help, but there is no doubt in my mind that without our health care system, her husband and children would not enjoy the standard of living they do today. Instead of living in crippling poverty on top of dealing with her death, they are financially secure enough to continue life without her.

To this end, my cousin undoubtedly took more than her fair share of pie when it comes to health care dollars. In my mind this is how it is supposed to work. Not everybody will suffer a four-year fight with cancer, but as long as OHIP covers the most of the costs, those who do are cared for.
posted by battlebison at 11:16 AM on March 8, 2010 [2 favorites]


Thank you for posting the article.
posted by diwolf at 11:19 AM on March 8, 2010


Sarah Palin: "We used to hustle over the border [to Canada] for health care"
posted by HP LaserJet P10006 at 11:26 AM on March 8, 2010 [3 favorites]


That story was heartbreaking.

My uncle died when I was 10. He had heart cancer, which he was cured of, but developed cardiomyopathy as a result (I don't really understand the pathology).

At the time, cardiomyophathy was rare - as was/is heart cancer - and little understood. His doctors told him he needed a heart transplant right away. His insurance company wasn't convinced, calling the procedure experimental, etc.

Eventually he became extremely ill and the doctors pressed the insurance company until they relented. A heart match was found for him in Salt Lake City. He was put on life flight immediately. He died in the helicopter on the way.

Fuck fuck fuck! It's just - it's insane. It's fucking insane. We spend so much money killing other people and pushing papers around while our loved ones die. It's baffling. Just utterly baffling.

As for me, I'll be happy as long as I don't have to die in a hospital.
posted by Lutoslawski at 11:27 AM on March 8, 2010 [2 favorites]


My heart goes out to everyone on this thread who is dealing/has dealt with the terrible illness of a loved one, and the financial and emotional fallout.
posted by sararah at 11:33 AM on March 8, 2010 [3 favorites]


I don't have the science at hand to back it up but I've heard it said that as little as sixty years ago, it generally took us six months to die

My understanding is that we've succeeded in compressing disability quite a bit conditional on you not dying of an infectious disease. Pre-mass produced antibiotics (tetracycline patented in 1950, penicillin mass produced in '44) healthy people could and did die very quickly, which they don't (often) anymore. Similarly, the decrease in infant / child mortality has eliminated many "fast deaths".
posted by a robot made out of meat at 11:36 AM on March 8, 2010 [1 favorite]


It seems uniquely American to me that not only do we not have standard coverage that would prevent you from going to the poorhouse while trying to save a loved one who dies anyway, we also are not allowed to assist them if they want to try to have a little dignity in the end while not dragging the whole affair out into a long, painful, torturous, expensive war for nothing either.

For some reason, the way you put this made me realize something that wasn't really obvious to me before: the system is (intentionally or not) rigged to make sure that any illness requiring a hospital stay of any kind leads to the largest possible profits for the health care system.

If I were feeling cynical, I would assume this is a system designed to take advantage of the fear and grief associated with illness in order to make money, but I'm not feeling cynical today so I'll chalk it up to the unintended consequences of attempting to heal the sick in an institutionalized way.

neither of those explanations take away the horrible fact of it, of course
posted by davejay at 11:38 AM on March 8, 2010 [2 favorites]


In the mirror universe, optimists look at Alt.Joe.Beese and go, "Damn, even I think that guy's too sunny."
posted by WCityMike at 11:39 AM on March 8, 2010 [1 favorite]


Actually we do treat the other end of the trip like this; it is very easy to generate a 6 or 7 figure NICU bill; some patients spend months there and get multiple surgeries and expensive technologies like ECMO used on them.

I was born at 28 weeks, and my parents were still paying my hospital bill off (from the 3 months in the neo-natal ward) until I was 12.
posted by leahwrenn at 11:46 AM on March 8, 2010 [2 favorites]


If I were feeling cynical

I commend you on your not feeling cynical, truly. My realization that most if not all of the culture/goings on in my beloved country of birth were rigged towards maximum profit or towards the pursuit of rigging it to be rigged towards such has really haunted me for a long time. For a country that prides itself on its religiosity and spirituality, there are so many places where we as a nation literally have no soul. I think that anyone who has had a loved one die a painful, dragged-out death can testify.

My feeling toward the disconnect is roughly analogous to what I used to feel, as a kid, staring up the side of one of the towers of the WTC. It's like, what the fuck is anyone thinking? Seriously, what????
posted by nevercalm at 11:58 AM on March 8, 2010 [1 favorite]


Really sad, almost made me cry at work, but didn't really contain any new information except that the writer has an incredible insurance policy.
posted by Afroblanco at 12:08 PM on March 8, 2010 [1 favorite]


It's just very, very scary for those who don't have insurance. My son's 8 day hospital stay at 6 weeks for severe RSV. In patient stay alone (not counting doc bills, xray, etc).

$40k. We only had to pay $1,600
posted by stormpooper at 12:08 PM on March 8, 2010


Actually we do treat the other end of the trip like this; it is very easy to generate a 6 or 7 figure NICU bill; some patients spend months there and get multiple surgeries and expensive technologies like ECMO used on them.

Yes, I know, but I think there's one major difference: we don't do this by routine, with nearly every patient regardless of the prognosis. A natural birth is preferred; a natural death is to be avoided at all costs. Though I'm sure we'll get around to changing the first part of that equation before long, given the for-profit health care system...
posted by vorfeed at 12:09 PM on March 8, 2010 [2 favorites]



I'm remembering my old boss. He was a real piece of shit. Through and through capitalist/salesman who would exploit anything, lie to anyone and would always justify it to me when I would call him on it with "Man, I just want to give my kids some of the things I didn't have growing up..."

He's probably going to be the CEO of something someday. He's the aggressive type who will fly up the ladder thanks to his ruthlessness and shameless greed.

What really makes me mad... What REALLY pisses me off...

Is knowing that a guy like him is reading that article somewhere and saying "Shit, we could've gotten another $100,000 out of her."

And guess what? Those assholes can afford whatever health care they'll ever need.
posted by Bathtub Bobsled at 12:13 PM on March 8, 2010 [3 favorites]


...born at 28 weeks, and my parents were still paying my hospital bill off (from the 3 months in the neo-natal ward) until I was 12.

I don't know how old you are, or if you are a parent, but as a parent myself I wanted to mention that your parents likely looked at that bill sometimes and frowned, then looked at you and smiled (or even laughed out loud), then sent the check off with smile intact -- even if you were throwing a tantrum at the time.
posted by davejay at 12:17 PM on March 8, 2010 [5 favorites]


I have often said that I wouldn't want to live the last year of intensely medicalized life leaving society with the medical bill. The problem is, it's nearly impossible to tell from the outset when that year begins. Is this the medical procedure that signals the beginning of the downward slope or is it the one that will give me another 15 years of happy, healthy, productive life? I'm not afraid of dying, but I certainly wouldn't like to deprive myself of a decade of life because I thought the end was closer than it really was. I pray that by the time I have to make this decision there is reasonable guidance. I don't think I'm alone in this.
posted by stoneweaver at 12:22 PM on March 8, 2010 [10 favorites]


My one week in the ICU in 2007 ended up being $30-35K, but thanks to good insurance (BCBS) our part of it was only around $3K.
posted by mrbill at 12:23 PM on March 8, 2010 [1 favorite]


stormpooper is right: It's just very, very scary for those who don't have insurance.

It's also hard for people with insurance to get support for making rational, cost-saving decisions. For instance, about two-and-a-half years ago our daughter's birthfather showed up at the court and declared his intention of seeking custody. This made me so anxious that I started having heart palpitations. If I took an anti-anxiety medication, the palpitations stopped.

It made total sense to me that I was having palpitations from extreme anxiety. I wasn't really worried about it being anything worse.

But my doctor--and then the cardiologist she insisted I see--pushed and pushed until I'd had this whole big cardiac workup that showed that my heart was fine and my arteries as clear as a mountain stream.

I really regretted not fighting harder. I mean, sure, it didn't really cost me anything--I pay up to a certain out-of-pocket amount every year, and then my insurance covers everything at 100%. Because I have chronic health issues, every year it's just a matter of time until I reach my out-of-pocket, so whether I get there in January with one ER visit, like I did this year, or get there in October during my stress test or that thing where they put dye in your veins and then shove you into a big machine, doesn't really matter.

But it costs ALL of us something when decisions like this are made over and over.

But I've also been frustrated when I've tried to talk to friends about how I regret letting myself be talked into this big cardiac workup, because they always just say, "But isn't it nice to know your heart and arteries are fine?" Well, sure, OK. But, really, based on what we already knew about my health, my age, and so on, the odds that my heart and arteries were anything but fine was tiny. My doctor should have been supporting me in not wasting resources on expensive tests to prove that a person who was almost certainly fine really was fine.

I was born at 28 weeks, and my parents were still paying my hospital bill off (from the 3 months in the neo-natal ward) until I was 12.

I have a cousin whose son was born prematurely. They were paying off the hospital bills until he was at least that age, too. I used to think they were really honorable--many people encouraged them to file bankruptcy, and they refused.

And then I became an adult and started getting EOBs and realized that for things like my own hospital stay when giving birth, my insurance company was paying only a fraction of how much it "cost." And that by virtue of not having insurance, my cousin and his wife might have paid 5, 6, 7, 8 times what an insurance company would have paid. And I got really angry at the years of hardship they endured. I still think they're really honorable people, but I would have still thought they were good people if they'd chosen to default on those bills.
posted by not that girl at 12:24 PM on March 8, 2010 [5 favorites]


and flushed an opened bottle of Sutent down the drain.

The hell? Flushed an anti-cancer drug down the drain? Boy, I'll bet the fish just loved that.

My grandmother is currently dying of cancer. I hope it's quick and relatively painless. It would certainly be stupid to make saving her life a priority: it can't be saved, she's a century freaking old, she is a dead woman walking. Make it reasonably comfortable is about all that can be fairly asked of our healthcare professionals at this point.
posted by five fresh fish at 12:46 PM on March 8, 2010


I am having back surgery tomorrow (certainly not nearly as serious as the stories others have told here) and, even though our reading and re-reading of our policy details leaves us thinking that we should be able to cover the out-of-pocket and deductible before the coverage kicks-in, I can't help but be be very fearful that there is a "gotcha" buried somewhere deep and obscure in the policy that is going to leave us broken and bankrupt.

And it angers me to no end that, in this (supposedly) greatest nation on earth evar, that I even feel I have to be afraid of such shenanigans. And yet, I've seen enough in my 52 years that tells me that I have every reason to be afraid.
posted by Thorzdad at 12:56 PM on March 8, 2010


There's another important issue brought up near the end of the article - many of these last-ditch "kitchen sink" treatments are experimental or uncommon, and then go on to be lifesaving go-to treatments doctors use first after the course of treatment has been refined: on the terminally ill looking for one last hope.

That, and as a counterpoint, my Uncle is slowly dying of lung cancer. He is fighting it, tooth and nail, every step of the way... his quality of life is miserable, especially as he's developed congestive heart failure on top of everything else. He's been rewarded with a grand-niece, a grand-nephew and seeing his daughter hired on as a full time teacher at the high-school where he taught shop.

As a counter-counter point, he has the "palliative pack" for when he knows it's time to go - morphine, atavan, and some other things. If he needs to be taken to the hospital in an ambulance, he's decided he doesn't need to go.
posted by Slap*Happy at 1:13 PM on March 8, 2010 [1 favorite]


*prays for Thorzad*
It seems one's perspective changes with age. The children are grown and gone to their own families, there are probably a couple of grandchildren, and the body is starting to break down.
The daily pill count is growing, and energy is waning. Persistent nagging pains cause the dilemma - take more ibuprofen/painkillers and risk organ damage, or live with pain? Should life be enjoyed as painlessly as possible, or should one's liver and kidneys be protected from pharmaceutical harm?
Is it wise to have a knee or hip replacement with the attendant after care and huge bills even with insurance? Is there enough life left to amortize such an investment?
For those who are aged and terminally ill, is anything but pain management realistic?
Is proper diagnosis the salient lack of current medical knowledge?
tl; it's ok if you dr.
posted by Cranberry at 1:13 PM on March 8, 2010


Often Terence's bills, with their blizzard of codes, took days to decipher. What did "opd patins t" or "bal xfr ded" mean?

They probably mean that the product/service description field in the database was specced out at 12 characters.

My diagnosis would be that we are dealing with legacy systems here, dating back to a time when storage was expensive, and therefore a major driver for system design.

This could be solved by either referencing a new table with a more complete description, or else by migrating the old data to the new format. However, both options would have flow-on effects for every interfacing system using this data, along with extensive end-to-end regression testing, across systems probably including (but not limited to):

- receipting & billing
- transaction processing
- data warehouse
- stock & inventory
- purchasing systems
- external insurance systems
- probably other external systems (eg govt and/or medical societies) for monitoring & regulation of procedures & prescriptions
- possible client software upgrades for potentially thousands of machines in doctors' surgeries, hospitals etc.

The total cost could easily amount to more than $618,616 - which is a lot to pay to make a line item decipherable to somebody who isn't necessarily even the key audience for it.
posted by UbuRoivas at 1:14 PM on March 8, 2010 [2 favorites]


I don't know what to think, re: greed vs. religion, in the health cost debate. But since it's cancer story time, let me tell you about how my father died, and the power of denial.

My father was a hypochondriac. It's relevant to the story, I promise. Not a hardcore hypochondriac, but enough of one that we had, by the time he had a real health problem, become used to simply ignoring his complaints of ill health.

He began complaining of back pain about a year before he died, and we were all convinced that it was merely the latest manifestation of his varied imaginary health problems. At first it didn't interfere with his life much, beyond the occasional complaint to us, but as time passed we did begin to wonder if he truly had a problem.

But we weren't insured, and we were poor. So we didn't go to the doctor. A friend of the family, a PA, told us it had to be sciatica, and there wasn't really any treatment for that and we'd waste what little money we had if we went to the doc. I am certain that his advice was well meant and neither I nor my family hold any grudge or ill feeling against him, though he felt quite guilty about his misdiagnosis.

Eventually the pain got so bad that my father couldn't go to work, and in desperation we took him to the ER where we were told that it was sciatica and there was nothing they could do but make him an appointment for a pain clinic several months in the future.

Denial is a powerful force, and while I don't hold any grudge or ill feeling against the PA who initially diagnosed it as sciatica, I do have considerable ill feeling against myself for indulging in denial for so long, the other members of my family have, when we've discussed it, said the same about themselves.

After his initial ER trip my father remained largely bedridden for the months leading up to his pain clinic appointment. Later we'd learn, as we'd have known if we hadn't been so deeply in denial, so convinced that it was partially hypochondria, that in the last few weeks he began dehydrating himself because getting up to pee hurt his back too much.

I drove him to the pain clinic on the appointed day, and they told me to take him to the ER. There, finally, they said it was cancer, something I'm convinced they knew after his first visit. They pumped blood and water into him, and that night he had a stroke. If we'd been smart we'd have had a DNR order, it was what he wanted but we hadn't thought, we were in denial, any number of excuses come up, it was a failure on our part, and beyond the basic fact of his death, his (possibly deliberate) misdiagnosis by the ER staff, I think that is the worst part of the story. We didn't have one, so they resuscitated him and that is where I think the bad part really started.

They kept him "alive" and in a coma with artificial respirators, and in obvious pain, for a week. They wouldn't give him enough drugs to dull the pain because, I remember one nurse telling me as if I were an idiot for asking, it might constipate him.

I have no idea how long that horror might have continued if a nurse hadn't taken pity on us and told us that we could order him transferred to a hospice where they would let him die. The final bill from the ER came to around $250,000.

We were poor, we had no insurance, and it is only through charity that the hospice that took him in did. It's a Catholic run place, and despite my animosity towards the Church I make donations to them every year out of gratitude for their charity to me in my time of need.

He died, finally, two days after they took him off the machines and put him in the hospice.

We, his family, knew perfectly well that he would have wanted to die following the stroke, we'd talked about it dozens of times. But the law wouldn't allow that, and the hospital was content to keep him on life support indefinitely regardless of our desire or his.

Autopsy showed that he had bone cancer, the initial tumor was the cause of the pain as it was pinching a nerve. It had metastasized, by the time we got him to the ER the second time even without the stroke he would have died soon.

I don't know how much of the hospital's refusal to let him die was from a desire to drive up the costs or what. I don't even know for sure that the hospital deliberately ignored the cancer on his first ER visit because they knew we had no way to pay, obviously they wouldn't admit it if it were true; I suspect it's true, but who can say for sure? I do know that the nurse who told us we had the option of ordering my father transferred to a hospice did so secretly and as if he were afraid that letting us know endangered his job. Whether his fears were justified or not, I can't say.

I do know that the entire situation is rotten, that whether from greed or from religious fear hospitals routinely create massive expenses to keep someone brain dead "alive".

I also know that the poor, those without insurance, get the shaft.
posted by sotonohito at 1:19 PM on March 8, 2010 [5 favorites]


I know we're supposed to be all head over heels about the joys of linking to printer-friendly pages, and I like text as much as the next reader, but if you look at the full page, you get photos, graphics, videos and supporting documents. You know, multimedia. I'm not sure why that link couldn't have been included with the post.
posted by sageleaf at 1:30 PM on March 8, 2010 [1 favorite]


The flip of all this discussion, is that this "torture" and these crazy-expensive treatments do sometime save lives. We once had a discussion where a Mefite - I won't name names because I may accuse the wrong person - insisted you could never "save" a life, because everyone dies. So sure, okay, taking that somewhat blindly literal approach, I'll define "lifesaving" and "surviving" as restoring an individual to enough health sufficient to live within +/- 15 years of their normal life expectancy. Cancers that were once routinely fatal, are now routinely survivable. In 1964, 4% of children survived ALL, whereas now 94% of children survive. Patients with many long-term fatal diseases (such as HIV and AIDS) can live fairly healthy, normal lives for decades. I have a hard time telling these people that their fear of their child's or their own death is blown out of proportion, and they need to adjust their expectations. On the other hand, I have a very easy time wholeheartedly agreeing that while it is unreasonable to turn every stone through to the very end, reasonable care should neither be contingent on private insurance nor bankrupt those who require it.

I'm physically unable to resist, then, reminding everyone to please donate to St. Jude Children's Research Hospital. They were/are a key player in getting those rates so high, no child is ever turned away because of a family's inability to pay, and no family is ever asked to pay a dime. We saw hundred thousand dollar bills that we were not asked to pay, purely because we were lucky enough to be treated at St. Jude.
posted by bunnycup at 1:35 PM on March 8, 2010 [4 favorites]


sotonohito: we are convinced that my friend was underdiagnosed by the first doctor, just to get him out, because he was a Charity Care case.
posted by mephron at 1:43 PM on March 8, 2010


The hell? Flushed an anti-cancer drug down the drain? Boy, I'll bet the fish just loved that.

Yes. That's what they do to prevent drug abuse and liability.

Why go to the doctor when a drink of water should cure us all...

or mutate the hell out of us.
posted by stormpooper at 1:46 PM on March 8, 2010


I read this almost immediately after David Reiff's harrowing book about his mother Susan Sontag's death. Sontag refused to accept that she was dying and Reiff is clearly still tormented about his complicity in her self-deception. So that would seem to be an argument for, in fact, going gracefully into that good night. And this seems to be part of what Amanda Bennett still struggles with; would it, in fact, have been better to spend the time preparing for losing Terence?

That said, I have two kids of my own, so Terence's ferocious desire to live to see them in college is completely, utterly, understandable and human to me. And he lived for seventeen months. Was it the expensive therapies? Or was it the ferocity of his will to live? I flinch away from the latter narrative, because if that's the case, in the end, did he die just because he didn't want to live badly enough? What about Susan Sontag? Could she have Lance Armstrong-ed it if she'd only tried?

What about Wendy Smithers, my best friend in high school, who died at 14 of glioblastoma? You think she was ready? She wasn't.

What about another close friend of mine, Beth, diagnosed last year with chronic myelogenous leukaemia? Belonging to the minority of patients for whom the miracle drug imanitib is ineffective? Referred for a bone marrow transplant before getting enrolled in the first human trial of a new drug that - fingers crossed - seems so far to be successful in patients with her particular mutation? I am not in any position to be getting ready to lose Beth, because she is in her forties. I would certainly divert every penny of my tax dollars away from defense contractors and agriculture subsidies to keep her. Would you?

And that seems to me to be the point here. Cancer is a murderer. And medicine in general and especially cancer treatment is moving so quickly that it's next-to-impossible to make the call as to who will stay and who will go. Patients (and their loved ones) have to live in this sort of Schroedinger's Cat quantum superposition of states where they are simultaneously prepared for death but avid to suffer whatever side effects are necessary to effect a cure. It's impossible.

Thanks to the USA's entirely broken health insurance system, Americans in this impossible situation also have to worry about money.

We can't prevent death. We can't resolve the impossible issues around how long to treat cancer patients, when new drugs make the prognosis a moving target.

But we could fix health insurance.
posted by rdc at 2:10 PM on March 8, 2010 [6 favorites]


[philip-random] I don't have the science at hand to back it up but I've heard it said that as little as sixty years ago, it generally took us six months to die.... Now, with the astonishing evolution of medical technology, that death generally takes six years. Not all of it sheer pain and torture, I'm sure, but even so ... ?

[a robot made out of meat] My understanding is that we've succeeded in compressing disability quite a bit conditional on you not dying of an infectious disease.... Similarly, the decrease in infant / child mortality has eliminated many "fast deaths".

There's also lead time bias in that six-year statement, particularly WRT cancer. Tremendous advances have been made in early diagnosis (with real, positive impact on mortality). Sixty years ago, most cancers were only detected once they were advanced enough to present symptoms, and nearly killing the patients; today, screening detects small lesions that precede symptomatic cancers by years. Chances are, if you die of cancer today, you'd know about having it for much longer than you would have sixty years ago.
posted by Westringia F. at 2:14 PM on March 8, 2010


Single f*cking Payer already
posted by hamida2242 at 2:18 PM on March 8, 2010 [9 favorites]


Cancer is a murderer.

It's strange, but in all my not-limited experience with cancer, I've found that personifying it this way is worse....the knowledge that it's just a bunch of mutating cells that happens to kill you was always somehow comforting.
posted by nevercalm at 2:19 PM on March 8, 2010


It's strange, but in all my not-limited experience with cancer, I've found that personifying it this way is worse....the knowledge that it's just a bunch of mutating cells that happens to kill you was always somehow comforting.

Opposite for me. I write hate letters to cancer (not linking to them but they're on my blog), and I find that it really helps me. The "just a bunch of mutating cells" has an emotional effect to me that minimizes how serious it is. It makes it sound like a skin tag or an extra belly button loop or something. On the other hand, personifying cancer as a murderer, however scientifically inaccurate that may be, helped me cope with my anger issues. I'm still furious, enraged even, but at least I know "who" I am angry at. Not at my husband, or my mother, or my friends whose babies didn't die of cancer, and so on, but at CANCER.
posted by bunnycup at 2:29 PM on March 8, 2010 [1 favorite]



Since everyone is throwing in their somber anecdotes, I would just like to add mine:

I had just started a job, many years ago. The employer didn't offer health insurance until you had worked there 3 months. I'm not too bitter about that. In that sort of field, people are in and out the door faster than you could imagine.

I went to a clinic with a very sore throat. They said it was strep, they gave me a throat culture, prescribed an antibiotic that wouldn't have done any good (seeing as I had strep throat 1 or 2 times a year every year of my life up until that point) because it was cheap, and they sent me home.

Two days later, while still awaiting the culture results, I passed out from both the pain and the fact my throat was making it difficult to breathe. My dad and a next door neighbor carried me to the car where I slipped in and out of consciousness several times on the way to the hospital. When I arrived, the ER nurse took one look at my throat and called a ENT specialist to the ER to perform emergency surgery.

My infection was so severe it had spread to the tissue adjacent the corotoid artery. Had I waited any longer, they wouldn't have been able to perform the surgery and I don't know what would have happened after that (as the ENT phrased it "We would have done the best to make you comfortable, and crossed our fingers.").

After the tonsillectomy, the removing of my adenoids, and removing some inflammed tissue around my larynx (preventing me from talking for almost a week) I was left to sit in a hospital bed, floating on demoral and watching What About Bob three or four times (TNT was playing it every few hours, or maybe it just seemed that way). When I went to the cashier, they handed me a bill for over $11,000.

This is where things start to piss me off. When they found out I didn't have insurance, they knocked of 2 grand. That should tell you why our premiums are so high. Then, I had a consultation with NYS to see if I could get some of it paid for by Medicaid or Dependent Extensions or something. They calmly explained to me that my $8.50/hr job prevented me from qualifying for any of these programs.

My dad turned beet red: "You mean, he has gone out, found a job, and lives on his own, and if he was sitting in our basement, doing nothing but smoking dope and playing video games, he'd qualify?"

The gentleman nodded as a reflex, as if this was the millionth time someone like me had come to him, too poor to pay his hospital bill, but still making too much to qualify for any assistance.

As it turned out, my dad wrote a check and I spent four years paying him back.

Currently, I pay $2644 a year for my health insurance, and what really slays me is the fact that if the same thing were to happen now, I'd still have to find $1500 to pay the deductible, when I already know the hospital would charge them $2000 they didn't need to.

Fuck.That.
posted by Bathtub Bobsled at 2:33 PM on March 8, 2010 [2 favorites]


When I read stories like this I always agonise over whether to post or not...

This story, and others like it, make me feel so very happy that I will never see a bill for my hospital treatment and that medical care has not become yet another commodity here, but I am filled with a deep sadness and empathy for people who lack such a system, and struggle to understand how the US system operates. I simply cannot relate.

I agonise over posting as I don't want to come across as gloating.

I sincerely hope that in the near future you get this sorted and nobody will have to go through the kind of tramautic experiences outlined in this, and far too many other, threads.
posted by knapah at 2:53 PM on March 8, 2010 [2 favorites]


Oh, no, Bathtub Bobsled, the hospital wouldn't charge your insurer that $2000. Your insurer has a contract with the hospital and has negotiated its rates for payment, and pays far, far less than you would on your own. Feel all better now?
posted by dilettante at 3:02 PM on March 8, 2010 [2 favorites]


Oh, no, Bathtub Bobsled, the hospital wouldn't charge your insurer that $2000. Your insurer has a contract with the hospital and has negotiated its rates for payment, and pays far, far less than you would on your own. Feel all better now?

No. Quite the opposite.

I know you meant well, though.
posted by Bathtub Bobsled at 3:40 PM on March 8, 2010 [1 favorite]


I was born at 28 weeks, and my parents were still paying my hospital bill off (from the 3 months in the neo-natal ward) until I was 12.

And for the contrast, I was born at 27 weeks to a single mother on social assistance, also spent 3 months in the neo-natal ward, and my mother didn't have any bills to pay as a result.

I'm 31 now, and it still blows my mind. It's quite possible I wouldn't have survived if she had been expected to pay.
posted by aclevername at 3:59 PM on March 8, 2010 [1 favorite]


I'm still knocked over by the heading "31% for paperwork."

My wife and I have watched our parents go through cancer treatments - some very successful, some not. Here in Canada, your costs can sometimes get substantial if you opt for a treatment that hasn't yet been approved and you don't have supplemental insurance, but this doesn't happen too often.

It's my experience that in our single-payer system, the health care team spends more of their time on actually providing care, because they don't have to take financial issues into account.
posted by Artful Codger at 4:21 PM on March 8, 2010 [1 favorite]


davejay wrote: "For some reason, the way you put this made me realize something that wasn't really obvious to me before: the system is (intentionally or not) rigged to make sure that any illness requiring a hospital stay of any kind leads to the largest possible profits for the health care system."

This was over 15 years ago now, but the first time my Mom had to be hospitalized due to complications of MS (viral pneumonia, in this particular case), the doctors were pushing hard for a DNR order. My Dad wasn't having it, even though she was almost completely paralyzed by that point and had been for several years.

Sadly, the only thing keeping her alive accomplished was letting her live (with a feeding tube) to see her husband die of a heart attack a year or two later followed by a month long stay in a hospital on a ventilator (pneumonia, again, and this time with a trach tube), and a little under a year in a nursing home, where she ended up dying from yet another bout of pneumonia after my grandmother and sister finally wrapped their heads around the fact that prolonging her life even further wasn't doing anybody any good at all.

All I got out of it was four years of watching her suffering. Not a nice way to spend one's early teens, to be honest.

In her case, Medicare paid for it all, since being on disability qualifies you for Medicare.
posted by wierdo at 4:36 PM on March 8, 2010 [1 favorite]


After a lot of soul searching and professional counseling, our family came to agree that my father's life has essentially ended already. Despite all the morphine and everything else being wheeled around on that meds cart, the best they could come up with was to withhold food and water.
posted by StickyCarpet at 8:24 PM on March 8, 2010


I am so thankful that the serious injuries my wife and I have suffered in the past, that required emergency medical services and hospital stays, and, in her case, rounds of surgeries and months of rehabilitation, happened in a country with healthcare instead of insurance.
posted by five fresh fish at 8:29 PM on March 8, 2010


StickyCarpet Yeah, it's that part that really pisses me off both specifically about my father and in general about the system. We couldn't ask that the hospital, or hospice, or any other place actually end his life. Oh no, that would be wrong somehow. But letting him slowly die of thirst that's perfectly fine and dandy.
posted by sotonohito at 4:01 AM on March 9, 2010 [1 favorite]


death is sometimes better than living when you are kept alive by machines and tubes and all of the diginity of life is gone
Having spent more time in hospital beds than I care to think about, I can tell you right now that from the moment you step into the ER or put on a johnny, you discover that dignity is artifice.

One should also be careful bandying about the saw "How many children in developing countries could have been vaccinated with the money that was spent..." as that has as much meaning as saying "How many cups of raisins could be lined up along route 66 with the money that was spent..." The fact of the matter is that unless you or some other source contributes to funding vaccines in developing countries, then that money wouldn't make it there.

My daughter spent three weeks in the NICU and I spent the better part of a year having the same conversation with Blue Cross every month. They sent a bill for NICU costs, I reminded them of the conversation I'd had with them last month for that bill and the confirmation number and they'd look through the log and say something like, "oh right, I see the problem. I'll take care of it." which usually resulted in another bill the next month. I became convinced that they were trying to see if I was stupid enough to pay that bill. Nope, sorry.

As far as end-of-life care is concerned, my mom has a diagnosis that has pretty much signed her death certificate. In contrast to the stories here, her doctor basically told her that they were done - she should make herself as comfortable as she can. Right now, she's waiting for God. Then again, this is what she thinks she wants.
posted by plinth at 6:14 AM on March 9, 2010


I'm sorry I don't have a deeper, more insightful, more intelligent thing to contribute toward the discussion but I hope what I have to say is meaningful on some level or other:

FUCK YOU, CANCER.
posted by majick at 6:16 AM on March 9, 2010 [2 favorites]


How to piss me off. Use this article as a stepping stone to how great they are.
posted by stormpooper at 12:33 PM on March 22, 2010


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