What do people do when they can’t afford end-of-life care?
July 18, 2016 11:34 AM Subscribe
The Devastating Process of Dying in America Without Insurance
Some 28 million people in the United States do not have health insurance, and for the dying and their families, lack of insurance is devastating. Though the care needs that arise with terminal illness are simple, they are often prohibitively difficult to meet without insurance. The uninsured and their families are left to navigate public and charity end-of-life care options that vary widely across the country, if they are available at all. There are no data on how or where the uninsured access this care, and the scope of unmet need is virtually unknown. What is known is that, at the end of their lives, many uninsured people quite literally cannot afford to die with dignity.
Some 28 million people in the United States do not have health insurance, and for the dying and their families, lack of insurance is devastating. Though the care needs that arise with terminal illness are simple, they are often prohibitively difficult to meet without insurance. The uninsured and their families are left to navigate public and charity end-of-life care options that vary widely across the country, if they are available at all. There are no data on how or where the uninsured access this care, and the scope of unmet need is virtually unknown. What is known is that, at the end of their lives, many uninsured people quite literally cannot afford to die with dignity.
This whole thing makes Orwell's "How The Poor Die" look pretty good, because at least there were charity beds for the dying.
I don't understand how everything about this country is so horrible. I mean, I understand the mechanisms, I understand the history, but viscerally, I just feel like surely people can't want things to go this way. Sometimes I read Oryx and Crake and I feel like Crake had the right idea - humans are terrible, bring on the Crakers.
posted by Frowner at 12:00 PM on July 18, 2016 [15 favorites]
I don't understand how everything about this country is so horrible. I mean, I understand the mechanisms, I understand the history, but viscerally, I just feel like surely people can't want things to go this way. Sometimes I read Oryx and Crake and I feel like Crake had the right idea - humans are terrible, bring on the Crakers.
posted by Frowner at 12:00 PM on July 18, 2016 [15 favorites]
I'm watching my parents struggle to keep themselves afloat because my stepdad has Parkinson's/heart congestion/prostate cancer. Medicare covers some of his expenses but not all. My mom had to quit work--which she really can't afford to do--to become his full-time caregiver. The way we treat healthcare in America is a shame. The US will never get single-payer healthcare for everyone, because a huge chunk of the country will always be convinced that doing so is "socialism" (never mind that the people who bandy about that word have any fucking actual idea what it means, but it sounds scary so it is effective) and that it means people they don't like (poor, POC, etc) will be getting a free ride.
posted by Kitteh at 12:08 PM on July 18, 2016 [15 favorites]
posted by Kitteh at 12:08 PM on July 18, 2016 [15 favorites]
i just feel like surely people can't want things to go this way.
They don't. They're also just in denial about it. When they hear about "poor people" as some kind of vague concept, maybe they give to a charity, and then tell themselves that "okay, there, that takes care of that" and turn away and don't look at the real scope and size of the problem, so they can't be scared by how ineffective their contribution is - because if they do then they'd have to admit that charity isn't working and that we need taxes and stuff like that.
In the minds of many, there are poor people, but there is Medicare, so it's okay.
posted by EmpressCallipygos at 12:12 PM on July 18, 2016 [9 favorites]
They don't. They're also just in denial about it. When they hear about "poor people" as some kind of vague concept, maybe they give to a charity, and then tell themselves that "okay, there, that takes care of that" and turn away and don't look at the real scope and size of the problem, so they can't be scared by how ineffective their contribution is - because if they do then they'd have to admit that charity isn't working and that we need taxes and stuff like that.
In the minds of many, there are poor people, but there is Medicare, so it's okay.
posted by EmpressCallipygos at 12:12 PM on July 18, 2016 [9 favorites]
Terminally ill patients must describe their symptoms again and again as they pass through various levels of triage, often undergoing tests or procedures intended to lay the groundwork for treatment they know is futile.
Proper health care should not be proportional to income. I can't understand how this is not common ground for everyone. Portillo's story is heart breaking.
Our national narrative hinges upon the axiom that relegating numberless people to needless agony is better than tinging the rest of us with the dreaded socialism. We lucky Americans don't know, actually, what a socialism is, but by-god we know one when we see one.
posted by mule98J at 12:14 PM on July 18, 2016 [7 favorites]
Proper health care should not be proportional to income. I can't understand how this is not common ground for everyone. Portillo's story is heart breaking.
Our national narrative hinges upon the axiom that relegating numberless people to needless agony is better than tinging the rest of us with the dreaded socialism. We lucky Americans don't know, actually, what a socialism is, but by-god we know one when we see one.
posted by mule98J at 12:14 PM on July 18, 2016 [7 favorites]
They're also just in denial about it.
i think it's also sort of the same mentality that makes middle to lower economic class people vote for officials who are like "yeah, we're totally gonna give tax breaks only to the rich, that's our plan!" because they themselves think that they'll be The Rich one day and not The Poor. it's those other people who are going to suffer, not them! what a ridiculous suggestion! etc
posted by poffin boffin at 12:17 PM on July 18, 2016 [18 favorites]
i think it's also sort of the same mentality that makes middle to lower economic class people vote for officials who are like "yeah, we're totally gonna give tax breaks only to the rich, that's our plan!" because they themselves think that they'll be The Rich one day and not The Poor. it's those other people who are going to suffer, not them! what a ridiculous suggestion! etc
posted by poffin boffin at 12:17 PM on July 18, 2016 [18 favorites]
This article highlights an important problem -- one that we could improve greatly on if the US political system weren't so broken -- but the lack of even a passing mention of "right to die" laws makes it feel incomplete. Not everyone who is terminally ill would choose passive / voluntary euthanasia were it an option, but among those who would, the fact that these options are not available in most jurisdictions represents not only a heartbreaking violation of their wish to die with dignity when they choose to, but also an egregious misallocation of whatever resources we do have to take care of people who would rather die naturally with proper palliative care / hospice treatment. If we refuse to spend more public money on the problem, we ought to at least ensure that the money we do spend goes to people who actually want their life to continue.
Furthermore, because healthcare at every stage before "terminal" is increasing in cost, it's increasingly likely that individual savings have already been wiped out by the time the end comes, and also quite likely that family members have all had to chip in to try to help, many of them doing so out of their own resources that they would otherwise be able to devote to paying for their own late-life healthcare.
I'm afraid that what we're seeing in this article feels like the tip of the iceberg.
posted by tonycpsu at 12:19 PM on July 18, 2016 [10 favorites]
Furthermore, because healthcare at every stage before "terminal" is increasing in cost, it's increasingly likely that individual savings have already been wiped out by the time the end comes, and also quite likely that family members have all had to chip in to try to help, many of them doing so out of their own resources that they would otherwise be able to devote to paying for their own late-life healthcare.
I'm afraid that what we're seeing in this article feels like the tip of the iceberg.
posted by tonycpsu at 12:19 PM on July 18, 2016 [10 favorites]
The way the world is going, that state euthanasia sequence in Soylant Green looks pretty good - I get old, they give me some euphorics and and I hallucinate my way to death. Not as nice as a well-supported retirement with full access to medical care but a lot better than three months of end-stage cancer and no painkillers.
posted by Frowner at 12:22 PM on July 18, 2016 [12 favorites]
posted by Frowner at 12:22 PM on July 18, 2016 [12 favorites]
I just feel like surely people can't want things to go this way.
I wish that were the case, but in the American ghoulocracy, there are plenty of powerful people that do. In part because it's profitable, but also because in their worldview there is nothing more contemptible than being poor.
posted by ryanshepard at 12:26 PM on July 18, 2016 [9 favorites]
I wish that were the case, but in the American ghoulocracy, there are plenty of powerful people that do. In part because it's profitable, but also because in their worldview there is nothing more contemptible than being poor.
posted by ryanshepard at 12:26 PM on July 18, 2016 [9 favorites]
I realize that not all uninsured people are poor, but for those who are, wouldn't it make sense to just rack up debt getting whatever service you want, if you're terminally ill? I mean once you're gone, the hospitals and their debt collection agencies and debt buyers are just out of luck if you die with no real assets to speak, of right?
posted by If only I had a penguin... at 12:26 PM on July 18, 2016
posted by If only I had a penguin... at 12:26 PM on July 18, 2016
I realize that not all uninsured people are poor, but for those who are, wouldn't it make sense to just rack up debt getting whatever service you want
How much debt do you think poor people are capable of racking up?
posted by tonycpsu at 12:28 PM on July 18, 2016 [20 favorites]
How much debt do you think poor people are capable of racking up?
posted by tonycpsu at 12:28 PM on July 18, 2016 [20 favorites]
Only if your diagnosis-to-death timeline is short and dramatic. "I need painkillers, multiple specialist appointments and specialized medical stuff for the next 18 months" does not lend itself well to running up bills. Also, many doctors make the uninsured pay upfront. If you go to the ER, you can get certain care, but nothing like what you'd need for a peaceful death.
If you had a couple of very high-limit credit cards and could carry the minimums, maybe.
posted by Frowner at 12:29 PM on July 18, 2016 [3 favorites]
If you had a couple of very high-limit credit cards and could carry the minimums, maybe.
posted by Frowner at 12:29 PM on July 18, 2016 [3 favorites]
I had actually thought about that...So obviously credit cards are out as any real big-debt racking-up mechanism...but as I understand it (and I admit, I don't understand it) the way medical expenses work is that you get your treatment at the hospital and then they bill you. So I wasn't so much thinking that they would pay with a credit card and then never pay the credit card back, I was thinking they would just never pay the hospital in the first place.
posted by If only I had a penguin... at 12:30 PM on July 18, 2016
posted by If only I had a penguin... at 12:30 PM on July 18, 2016
Huh...ok.. Thanks.
And in case it was unclear that I think so: That really sucks.
posted by If only I had a penguin... at 12:32 PM on July 18, 2016 [1 favorite]
And in case it was unclear that I think so: That really sucks.
posted by If only I had a penguin... at 12:32 PM on July 18, 2016 [1 favorite]
For expensive care, they will make you pay upfront if you don't have insurance. Or if you have insurance, they will require a written authorization from insurance saying they will pay. It's only for the more routine procedures that they will bill you sometime after you get your care.
Visiting the ER will keep you alive for the moment. But usually nothing more than that.
posted by ethidda at 12:33 PM on July 18, 2016 [2 favorites]
Visiting the ER will keep you alive for the moment. But usually nothing more than that.
posted by ethidda at 12:33 PM on July 18, 2016 [2 favorites]
it's right there in the article.
So, for the better part of a year, the Portillos carted Aquilino back and forth to the emergency room in a wheelchair, where they would wait for hours, sometimes all night, simply to have his pain medications refilled.
to get a refill for his medication, a thing that takes me a single phone call and 5 minutes at the pharmacy, this man dying in horrible pain had to go to the emergency room and sit there for hours.
posted by poffin boffin at 12:34 PM on July 18, 2016 [23 favorites]
So, for the better part of a year, the Portillos carted Aquilino back and forth to the emergency room in a wheelchair, where they would wait for hours, sometimes all night, simply to have his pain medications refilled.
to get a refill for his medication, a thing that takes me a single phone call and 5 minutes at the pharmacy, this man dying in horrible pain had to go to the emergency room and sit there for hours.
posted by poffin boffin at 12:34 PM on July 18, 2016 [23 favorites]
But what about the millions of uninsured poor Americans who simply have no way to pay for that care? While Medicare, Medicaid, and most private insurers cover hospice, millions of Americans—mostly working-poor adults under 65—don’t have access to an insurance program. In most of the 19 states that have not accepted the Affordable Care Act’s Medicaid expansion, for example, qualifying for Medicaid is almost impossible unless you’re a child, pregnant, a parent on welfare, elderly, or disabled (only Wisconsin is finding ways other than the federal expansion to cover its childless adults). In these states, more than 3 million adults fall into what’s called the ACA “coverage gap”: They don’t qualify for Medicaid under the states’ rules, but make too little to qualify for federal subsidies on the government-run insurance marketplaces.Thanks for reminding me that the governor and legislators of my state (TX) were willing to cause pain, suffering and death to thousands or more just to score political points.
posted by tippiedog at 12:36 PM on July 18, 2016 [5 favorites]
I realize that not all uninsured people are poor, but for those who are, wouldn't it make sense to just rack up debt getting whatever service you want, if you're terminally ill?
I'm not calling you out, but I think this question is very close to a heart of this problem. To me, racking up a bunch of debt is easy, because I have insurance that would open the gates to hospitals and pharmacies, and I have enough credit (or could get my hands on enough credit) to perhaps get me through the next few however-long-it-takes. This could easily change, and the main thing that could change this would most likely be a long, difficult illness.
It's so easy, here in America, to feel safe and secure in our own level of income and access, but it can be taken away within months, if not weeks (or sometimes even just one event) and then we can be literally left with no options.
posted by xingcat at 12:42 PM on July 18, 2016 [10 favorites]
I'm not calling you out, but I think this question is very close to a heart of this problem. To me, racking up a bunch of debt is easy, because I have insurance that would open the gates to hospitals and pharmacies, and I have enough credit (or could get my hands on enough credit) to perhaps get me through the next few however-long-it-takes. This could easily change, and the main thing that could change this would most likely be a long, difficult illness.
It's so easy, here in America, to feel safe and secure in our own level of income and access, but it can be taken away within months, if not weeks (or sometimes even just one event) and then we can be literally left with no options.
posted by xingcat at 12:42 PM on July 18, 2016 [10 favorites]
My friend's brother showed up at the local city run hospital with a shattered wrist.
No insurance.
They demanded $35K to operate.
Up front.
posted by effugas at 1:23 PM on July 18, 2016 [14 favorites]
No insurance.
They demanded $35K to operate.
Up front.
posted by effugas at 1:23 PM on July 18, 2016 [14 favorites]
They're also just in denial about it.
i think it's also sort of the same mentality that makes middle to lower economic class people vote for officials who are like "yeah, we're totally gonna give tax breaks only to the rich, that's our plan!" because they themselves think that they'll be The Rich one day and not The Poor. it's those other people who are going to suffer, not them! what a ridiculous suggestion! etc
"Socialism never took root in America because the poor see themselves not as an exploited proletariat, but as temporarily embarrassed millionaires."
attributed to John Steinbeck
posted by lalochezia at 1:23 PM on July 18, 2016 [6 favorites]
That's, nuts, effugas. Wouldn't a broken bone be considered an emergency? (i.e. care that I thought they were required to provide?)
posted by If only I had a penguin... at 1:24 PM on July 18, 2016 [1 favorite]
posted by If only I had a penguin... at 1:24 PM on July 18, 2016 [1 favorite]
No, hospitals are required to provide life saving care and a broken bone is usually not life threatening.
posted by the agents of KAOS at 1:28 PM on July 18, 2016 [2 favorites]
posted by the agents of KAOS at 1:28 PM on July 18, 2016 [2 favorites]
it's even worse if the uninsured patient is ESL, because people will just fall all over themselves to take appalling advantage of you (in general, but specifically in medical situations) when your english is imperfect or accented, and this increases exponentially the darker your skin is.
posted by poffin boffin at 1:29 PM on July 18, 2016 [1 favorite]
posted by poffin boffin at 1:29 PM on July 18, 2016 [1 favorite]
more specifically i know spanish-fluent nurses who have been directly told by hospital supervisors not to provide translation assistance for ESL patients so that they could more easily be denied services.
posted by poffin boffin at 1:32 PM on July 18, 2016 [10 favorites]
posted by poffin boffin at 1:32 PM on July 18, 2016 [10 favorites]
I realize that not all uninsured people are poor, but for those who are, wouldn't it make sense to just rack up debt getting whatever service you want
This is in no way meant as a dig on you, but i, too thought this made sense when i was like 18. The i got my first real hospital bill of several thousand dollars, and discovered:
A. What a clusterfuck the entire system is, and that no they actually wont let you do this.
B. That depends entirely on your insurance status and credit, as others here have said.
The other thing i discovered is that once you fuck off, even just for a while, on one medical debt they know chexsystems style and will hassle you SO MUCH over even a couple hundred bucks seemingly forever.
I have multiple friends now, otherwise healthy people in their early 20s!, who have experienced the "no fuck off pay up front or leave" and dealt with fucks up hips or other injuries from say, a car or sports accident for years until they finally got insurance somehow and could deal with it.
They very much will not just put you in debt for 20k or whatever because they know they wouldn't collect on most of those debts.
And the ones they do, through the ER or whatever, that people default on? They just write those off on their taxes.
The entire system is fucking broken, and it's very much stacked so that you don't get to fuck the system. The system fucks you, or no fucking occurs at all.
posted by emptythought at 2:08 PM on July 18, 2016 [18 favorites]
This is in no way meant as a dig on you, but i, too thought this made sense when i was like 18. The i got my first real hospital bill of several thousand dollars, and discovered:
A. What a clusterfuck the entire system is, and that no they actually wont let you do this.
B. That depends entirely on your insurance status and credit, as others here have said.
The other thing i discovered is that once you fuck off, even just for a while, on one medical debt they know chexsystems style and will hassle you SO MUCH over even a couple hundred bucks seemingly forever.
I have multiple friends now, otherwise healthy people in their early 20s!, who have experienced the "no fuck off pay up front or leave" and dealt with fucks up hips or other injuries from say, a car or sports accident for years until they finally got insurance somehow and could deal with it.
They very much will not just put you in debt for 20k or whatever because they know they wouldn't collect on most of those debts.
And the ones they do, through the ER or whatever, that people default on? They just write those off on their taxes.
The entire system is fucking broken, and it's very much stacked so that you don't get to fuck the system. The system fucks you, or no fucking occurs at all.
posted by emptythought at 2:08 PM on July 18, 2016 [18 favorites]
My friend's brother showed up at the local city run hospital with a shattered wrist.
No insurance.
They demanded $35K to operate.
Up front.
Eeeeeep. I exploded my wrist last October (fell on it, all my weight onto concrete, both bones broken and also split like a piece of wood slammed onto the ground). After two surgeries – the first with three pins, the second two months later to take out the pins – four months of physical therapy, and this great opium+caffeine+paracetamol painkiller (paracetamol alone does zilch for me, Tramadol made me sick as a dog, they raised an eyebrow at codeine, but straight opium? A-OK) the total cost to me was two euros. Cause I had to go to my GP twice to get the PT sessions renewed and it costs one euro out of pocket to see a GP.
I keep telling my European friends that I'm relieved when I look at the surgery scars on my wrist and yeah. This is why.
It doesn't even cost that much in taxes... it costs LESS than the total cost to society. They do these sorts of calculations. I'm too worn out to document this (very long week), but I've seen it in our tax stuff.
posted by fraula at 2:21 PM on July 18, 2016 [19 favorites]
No insurance.
They demanded $35K to operate.
Up front.
Eeeeeep. I exploded my wrist last October (fell on it, all my weight onto concrete, both bones broken and also split like a piece of wood slammed onto the ground). After two surgeries – the first with three pins, the second two months later to take out the pins – four months of physical therapy, and this great opium+caffeine+paracetamol painkiller (paracetamol alone does zilch for me, Tramadol made me sick as a dog, they raised an eyebrow at codeine, but straight opium? A-OK) the total cost to me was two euros. Cause I had to go to my GP twice to get the PT sessions renewed and it costs one euro out of pocket to see a GP.
I keep telling my European friends that I'm relieved when I look at the surgery scars on my wrist and yeah. This is why.
It doesn't even cost that much in taxes... it costs LESS than the total cost to society. They do these sorts of calculations. I'm too worn out to document this (very long week), but I've seen it in our tax stuff.
posted by fraula at 2:21 PM on July 18, 2016 [19 favorites]
To clarify the last part of my comment: "it costs LESS than the total cost to society"
as in preventative medicine; what it would cost society if we didn't do this. Which is what we're seeing in the US :(
posted by fraula at 2:28 PM on July 18, 2016 [5 favorites]
as in preventative medicine; what it would cost society if we didn't do this. Which is what we're seeing in the US :(
posted by fraula at 2:28 PM on July 18, 2016 [5 favorites]
Has it not always been like this in the US? So where's the shock coming from?
posted by Twang at 2:43 PM on July 18, 2016 [3 favorites]
posted by Twang at 2:43 PM on July 18, 2016 [3 favorites]
We've had this conversation on Mefi before, about how many of us have seriously thought out the logistics of ending our own lives rather than bankrupting our families/suffering a long time, in the event of the worst diagnoses. Like many people, I have a plan that I hope I never have to use, but stories like this always make me think of it.
posted by emjaybee at 2:54 PM on July 18, 2016 [8 favorites]
posted by emjaybee at 2:54 PM on July 18, 2016 [8 favorites]
On more than one occasion, I've said to my wife, only half-jokingly, that when my time comes, I'd like to spend as much time as my people need to say goodbye, and then disappear into the vast Pacific Northwest wilderness and end things on my own terms while in the embrace of nature. Grieving can't be avoided. An endgame spent in dysfunctional misery can be. Maybe if I keep bringing it up every once in a while, we'll all become okay with letting it play out that way.
posted by vverse23 at 2:59 PM on July 18, 2016 [5 favorites]
posted by vverse23 at 2:59 PM on July 18, 2016 [5 favorites]
Canada recently passed "Right to Die" legislation which allows doctors to assist patients who are "suffering intolerably" and whose death is "reasonably foreseeable."
Must be 18 years of age to apply and has a mandatory 15 day waiting period.
Having watched my mother-in-law spend her last days in the "comfort" of a hospital bed; delirious, and labouring to breath around her terminal cancer, I'm not sure I want that kind of exit anyway.
An overdose would have been a kindness.
posted by Gwynarra at 3:11 PM on July 18, 2016 [1 favorite]
Must be 18 years of age to apply and has a mandatory 15 day waiting period.
Having watched my mother-in-law spend her last days in the "comfort" of a hospital bed; delirious, and labouring to breath around her terminal cancer, I'm not sure I want that kind of exit anyway.
An overdose would have been a kindness.
posted by Gwynarra at 3:11 PM on July 18, 2016 [1 favorite]
So, my best friend is going through breast cancer treatment after a year where her three-month-premature baby spent 6 months in the NICU and she herself was hospitalized during the rather traumatic birth process for nearly 3 months.
Before they would begin chemo, WITH insurance, the doctors at a Presbyterian hospital demanded $15k upfront even to schedule her first IV session.
She went back to the original hospital (funded by a school with strong research facilities, but no religious affiliation) where she'd given birth and they were happy to work out a payment plan for her after getting approval through her husband's insurance.
My stepfather died after a long, protracted battle with Hepatitis C and even with Medicare, my mom declared bankruptcy because she couldn't pay off the $60k outstanding in bills from his last two weeks of life, spent in the hospital dying of MRSA infections in his leg and both lungs. Oh, and THEN you get to pay exorbitant funeral and burial service fees -- because of course you do! AMERICA, LAND OF THE FREE (TO PROFIT ON SUFFERING)!!!!
Killing yourself if you're diagnosed with a terminal illness in the US should be legal, considering the alternatives; I'd definitely take the Soylent Green out if I were facing, say, early onset Alzheimer's or Hodgkin's Lymphoma.
Death is part of life, of course, but the destruction it causes for those in the blast radius is far too great for most to bear, at least financially. If the shit comes my way, I'll try to have enough in savings to fly to a more enlightened country and end my life on my own (low-cost and possibly less painful) terms, hopefully.
posted by Unicorn on the cob at 3:12 PM on July 18, 2016 [5 favorites]
Before they would begin chemo, WITH insurance, the doctors at a Presbyterian hospital demanded $15k upfront even to schedule her first IV session.
She went back to the original hospital (funded by a school with strong research facilities, but no religious affiliation) where she'd given birth and they were happy to work out a payment plan for her after getting approval through her husband's insurance.
My stepfather died after a long, protracted battle with Hepatitis C and even with Medicare, my mom declared bankruptcy because she couldn't pay off the $60k outstanding in bills from his last two weeks of life, spent in the hospital dying of MRSA infections in his leg and both lungs. Oh, and THEN you get to pay exorbitant funeral and burial service fees -- because of course you do! AMERICA, LAND OF THE FREE (TO PROFIT ON SUFFERING)!!!!
Killing yourself if you're diagnosed with a terminal illness in the US should be legal, considering the alternatives; I'd definitely take the Soylent Green out if I were facing, say, early onset Alzheimer's or Hodgkin's Lymphoma.
Death is part of life, of course, but the destruction it causes for those in the blast radius is far too great for most to bear, at least financially. If the shit comes my way, I'll try to have enough in savings to fly to a more enlightened country and end my life on my own (low-cost and possibly less painful) terms, hopefully.
posted by Unicorn on the cob at 3:12 PM on July 18, 2016 [5 favorites]
Like emjaybee, I have an exit strategy I hope to never need.
posted by SecretAgentSockpuppet at 4:42 PM on July 18, 2016 [1 favorite]
posted by SecretAgentSockpuppet at 4:42 PM on July 18, 2016 [1 favorite]
Was going to try to make a snarky post about it being "an acquired taste" or some such, but nah, this is too serious and too horrible.
Just today, an old family friend whom I hadn't heard from in years (who is an M.D.) said that two of his colleagues (both heart specialists) had quit the practice and retired early "over ethical concerns" - mainly about the whole "providing useless care to make money" issue which is kind of the flip side of the topic of the current post:
People who desperately need $0.50 of morphine can't get it, and people who really don't need anything are given $20,000 procedures.
posted by soylent00FF00 at 4:59 PM on July 18, 2016 [5 favorites]
Just today, an old family friend whom I hadn't heard from in years (who is an M.D.) said that two of his colleagues (both heart specialists) had quit the practice and retired early "over ethical concerns" - mainly about the whole "providing useless care to make money" issue which is kind of the flip side of the topic of the current post:
People who desperately need $0.50 of morphine can't get it, and people who really don't need anything are given $20,000 procedures.
posted by soylent00FF00 at 4:59 PM on July 18, 2016 [5 favorites]
Medical Story Time
So last fall I tore my peroneal longus tendon in my left foot. First place I went was Urgent care, they X-rayed, called it a tear and had me schedule a followup with a surgeon. He was sure there was something wrong, but needed an MRI to confirm. I get this and yeah it's a complete tear, something he'd never seen since doing ortho starting in 1982.
Basically the tendon starts in the calf, goes to outside of the ankle then under a bone tunnel in the foot to connect to the big toe. So you can imagine that with a complete tear there's on piece up by my ankle, and another piece if you're lucky sticking out of the tunnel.
Except it was not, it was in the tunnel so even though the whole shebang took an hour, there was still finding that end, making sure it didn't slip off into the tunnel again, and then sowing it al back together.
Which my surgeon did with the help of a PA-C.
The day of my surgery, the facility demanded I pay my deductible upfront or else they'd not do the procedure. I paid. They still billed me later for what should have been covered.
Then last month I get some paperwork that basically said that the PA-C had appealed the insurer's decision to not pay him. Purely informational.
And then this weekend I get more paperwork and it now reads as if I had appeal the charge and oops no I lost the appeal. So I'm waiting for the PA-C to send me a bill directly or sue me or whatever.
And the kicker for the denial of payment? "The PA-C can not bill us directly, he must be paid out of the facility fee that we already paid." I paid $500 of that in deductible, not sure how much more the insurance paid. The denied amount was $390.
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 7:32 PM on July 18, 2016 [4 favorites]
So last fall I tore my peroneal longus tendon in my left foot. First place I went was Urgent care, they X-rayed, called it a tear and had me schedule a followup with a surgeon. He was sure there was something wrong, but needed an MRI to confirm. I get this and yeah it's a complete tear, something he'd never seen since doing ortho starting in 1982.
Basically the tendon starts in the calf, goes to outside of the ankle then under a bone tunnel in the foot to connect to the big toe. So you can imagine that with a complete tear there's on piece up by my ankle, and another piece if you're lucky sticking out of the tunnel.
Except it was not, it was in the tunnel so even though the whole shebang took an hour, there was still finding that end, making sure it didn't slip off into the tunnel again, and then sowing it al back together.
Which my surgeon did with the help of a PA-C.
The day of my surgery, the facility demanded I pay my deductible upfront or else they'd not do the procedure. I paid. They still billed me later for what should have been covered.
Then last month I get some paperwork that basically said that the PA-C had appealed the insurer's decision to not pay him. Purely informational.
And then this weekend I get more paperwork and it now reads as if I had appeal the charge and oops no I lost the appeal. So I'm waiting for the PA-C to send me a bill directly or sue me or whatever.
And the kicker for the denial of payment? "The PA-C can not bill us directly, he must be paid out of the facility fee that we already paid." I paid $500 of that in deductible, not sure how much more the insurance paid. The denied amount was $390.
posted by 922257033c4a0f3cecdbd819a46d626999d1af4a at 7:32 PM on July 18, 2016 [4 favorites]
if we end up with 8 years of a republican potus who repeals the ACA in the first year of their presidency i will be dead before a democrat can change that decision back. i think about that a lot.
posted by poffin boffin at 8:44 AM on July 19, 2016 [11 favorites]
posted by poffin boffin at 8:44 AM on July 19, 2016 [11 favorites]
This is in my future.
I am (correction, I was) nowhere near poor. I'm literate and well spoken, in contrast to Mz. Portillo, et.al. and the two options for long term medical care if you're not a senior, I've found, seem to be shit and out of luck.
There doesn't seem to be much information, much less any help, on the financial and social support burdens on families that go through these kinds of crises.
FMLA is a nifty idea, but see how long that goes if you keep missing work.
People, on the whole, are great. Sympathetic, willing to help. Our systems though only focus on the bottom line for, well, our systems.
Work in a bank and start missing work because you're, say, the only family support for your brother who's got a rare kind of cancer, they'll give you all kinds of sympathy.
But the bottom line is dictated by some financial stooge three states away who doesn't have to deal with any local fallout from cutting you loose.
There's simply no social contract in place to deal with the dying. Or indeed, the very sick. Our system is a numb and blind beast that completely disregards the realities of human relationships.
I mean, what, I'm supposed to put my family members down? Like I can look at a balance sheet with my cat or dog on it and say "Well, old Spot is 16 years old and isn't worth $1,500 of medicine."
(Hell, I can't even do that with my animals. $10K to keep the cat alive another week? Willya take a check?)
Love is not supposed to be a liability.
I don't know where we got the idea of linking work to health care and forcing this tension between working a job or leaving someone home sick in pain, but it's absolute madness.
And we've been socialized in many ways to expect work to come first. A while back I had a small work emergency (actual, lives in peril type emergency, but plenty of other people there who could handle it, and again, small) and my mom got in a car accident.
My superior didn't hesitate in expecting me to forgo making sure my mom was ok in the hospital.
He's gone now in part because he was pretty much Darth Vader, but it's amazing how people can be expected to be inhuman by rote.
It's not just that we expect health care to be for profit, it's that we exclude humanity to deify profit-making.
What is living your life if it's not loving your family? Lot of people on their deathbed thinking "Jesus, if only I could have filed a few more forms for the company" are they?
Such a stupid waste.
posted by Smedleyman at 9:13 AM on July 19, 2016 [7 favorites]
I am (correction, I was) nowhere near poor. I'm literate and well spoken, in contrast to Mz. Portillo, et.al. and the two options for long term medical care if you're not a senior, I've found, seem to be shit and out of luck.
There doesn't seem to be much information, much less any help, on the financial and social support burdens on families that go through these kinds of crises.
FMLA is a nifty idea, but see how long that goes if you keep missing work.
People, on the whole, are great. Sympathetic, willing to help. Our systems though only focus on the bottom line for, well, our systems.
Work in a bank and start missing work because you're, say, the only family support for your brother who's got a rare kind of cancer, they'll give you all kinds of sympathy.
But the bottom line is dictated by some financial stooge three states away who doesn't have to deal with any local fallout from cutting you loose.
There's simply no social contract in place to deal with the dying. Or indeed, the very sick. Our system is a numb and blind beast that completely disregards the realities of human relationships.
I mean, what, I'm supposed to put my family members down? Like I can look at a balance sheet with my cat or dog on it and say "Well, old Spot is 16 years old and isn't worth $1,500 of medicine."
(Hell, I can't even do that with my animals. $10K to keep the cat alive another week? Willya take a check?)
Love is not supposed to be a liability.
I don't know where we got the idea of linking work to health care and forcing this tension between working a job or leaving someone home sick in pain, but it's absolute madness.
And we've been socialized in many ways to expect work to come first. A while back I had a small work emergency (actual, lives in peril type emergency, but plenty of other people there who could handle it, and again, small) and my mom got in a car accident.
My superior didn't hesitate in expecting me to forgo making sure my mom was ok in the hospital.
He's gone now in part because he was pretty much Darth Vader, but it's amazing how people can be expected to be inhuman by rote.
It's not just that we expect health care to be for profit, it's that we exclude humanity to deify profit-making.
What is living your life if it's not loving your family? Lot of people on their deathbed thinking "Jesus, if only I could have filed a few more forms for the company" are they?
Such a stupid waste.
posted by Smedleyman at 9:13 AM on July 19, 2016 [7 favorites]
I remind myself often these days, especially where medical care/treatment/access is concerned; we really are still living in the dark ages. While we might read about amazing discoveries and breakthroughs and possibilities every day, we are all just a few bad days away from being unable to access the most basic of care; setting broken bones, treating fevers, stitching wounds, bed rest. Dying peacefully. Forget an advanced and complex cure for a rare disease; can you get your arthritis treated? Your diabetes? Your (god forbid) dental problems?
Most of what's helping us live as long as we do right now is treated water, fewer jobs that entail dangerous manual labor, access to birth control, childhood immunizations and basic food safety. Discoveries of the last century (or even the one before that). Things that are also under attack by conservative governments whose short-sightedness approaches the suicidal.
I could go on, but ya'll are the choir. But every time a doctor orders my chronically ill husband another expensive test and still has to guess at how to treat him, I wonder how much further along we would be in medical knowledge if we didn't treat access to care as a rare privilege only the rich deserve.
posted by emjaybee at 10:07 AM on July 19, 2016 [6 favorites]
Most of what's helping us live as long as we do right now is treated water, fewer jobs that entail dangerous manual labor, access to birth control, childhood immunizations and basic food safety. Discoveries of the last century (or even the one before that). Things that are also under attack by conservative governments whose short-sightedness approaches the suicidal.
I could go on, but ya'll are the choir. But every time a doctor orders my chronically ill husband another expensive test and still has to guess at how to treat him, I wonder how much further along we would be in medical knowledge if we didn't treat access to care as a rare privilege only the rich deserve.
posted by emjaybee at 10:07 AM on July 19, 2016 [6 favorites]
"linking work to health care and forcing this tension between working a job or leaving someone home sick in pain, but it's absolute madness"
It's also another leftover of assuming half of every family was unpaid labor anyway.
posted by clew at 8:25 PM on July 19, 2016
It's also another leftover of assuming half of every family was unpaid labor anyway.
posted by clew at 8:25 PM on July 19, 2016
This hits so close to home for me. I spent nearly four years taking care of my mother-in-law full time after she was diagnosed with terminal cancer. She was a missionary (the fairly useful kind -- she did literacy development with minority language groups in developing countries) so, a lifetime of no money and shit insurance. And since she was 49 when she was diagnosed, she was far too young to qualify for Medicare, so the shit insurance with a $20,000 deductible was all she had.
The crappiest thing about being poor and dying in her case was not so much the bills --although they were ridiculous and would not have been paid without the amazing generosity of a handful of family friends -- but the stress. You're already dealing with the gut-punch of a terminal diagnosis, and you don't even have time or mental space to process it or grieve, because every minute of every day is spent balancing bills and trying to figure out how you can scrape together enough pennies to pay for treatment.
It makes me furious that we pile this huge, unnecessary burden on top of people who are already at the breaking point, emotionally. It's so stupid to have to try to come to terms with your own imminent death while also worrying about losing your house or spending every cent of your husband's meager retirement. How do you chose between bankrupting your spouse and brain radiation that might give you another couple months? And why do you have to chose?!
I hate the way health care works in this country. The ACA made things distinctly better (in ways that directly impacted me--my mother-in-law had a lifetime cap that she would have blown past in the first six months after her diagnosis, but the ACA provision doing away with lifetime caps had kicked in four months prior). But the healthcare system is still so broken. And a lot of the reason my mother-in-law had a somewhat-not-miserable death is because I spent four years of my life, unpaid, taking care of her. While I'm tremendously grateful that this was financially possible for us, you can't build a healthcare system around an assumption of a ready supply of qualified, competent, unpaid family caregivers.
posted by emilyanemone at 8:59 PM on July 19, 2016 [5 favorites]
The crappiest thing about being poor and dying in her case was not so much the bills --although they were ridiculous and would not have been paid without the amazing generosity of a handful of family friends -- but the stress. You're already dealing with the gut-punch of a terminal diagnosis, and you don't even have time or mental space to process it or grieve, because every minute of every day is spent balancing bills and trying to figure out how you can scrape together enough pennies to pay for treatment.
It makes me furious that we pile this huge, unnecessary burden on top of people who are already at the breaking point, emotionally. It's so stupid to have to try to come to terms with your own imminent death while also worrying about losing your house or spending every cent of your husband's meager retirement. How do you chose between bankrupting your spouse and brain radiation that might give you another couple months? And why do you have to chose?!
I hate the way health care works in this country. The ACA made things distinctly better (in ways that directly impacted me--my mother-in-law had a lifetime cap that she would have blown past in the first six months after her diagnosis, but the ACA provision doing away with lifetime caps had kicked in four months prior). But the healthcare system is still so broken. And a lot of the reason my mother-in-law had a somewhat-not-miserable death is because I spent four years of my life, unpaid, taking care of her. While I'm tremendously grateful that this was financially possible for us, you can't build a healthcare system around an assumption of a ready supply of qualified, competent, unpaid family caregivers.
posted by emilyanemone at 8:59 PM on July 19, 2016 [5 favorites]
I work in a hospital as a palliative care nurse, I was a hospice nurse before that. The palliative care position is about a million times more difficult. When an 88 year old comes in with chf, copd and some flavor of metastatic cancer and the physicians decide to a) intubate b) provide ICU care for a few weeks at roughly $8000 a day then c) put a trach and peg in the patient so they can get shipped out to a nursing care facility it makes me want to give up. It's not entirely the physician's fault, families often seem to not have any concept of terminal illness and death. They will argue that about how strong the patient is, what a fighter they are, they can't give up on them. The doctors fail when they don't push back and let these delusional family members direct care. Why even make a trach/peg an option for a terminal patient? So in the meantime we spend an insane amount of money to provide very aggressive yet futile care. You don't "lose the battle" when you die. Even the language is aggressive and burdensome. Medicare and Medicaid cover hospice care at 100% and while hospice isn't a fix all, it does provide comfort medications and support. But to get to hospice you have to accept that you are dying and all the aggressive, painful and expensive medicine in the world won't change that. I am a DNR/DNI, no exceptions. If I'm ill enough to be on a vent then let me go, it's not giving up to not want to step into the vortex of medical care.
posted by yodelingisfun at 9:43 PM on July 19, 2016 [9 favorites]
posted by yodelingisfun at 9:43 PM on July 19, 2016 [9 favorites]
If I'm ill enough to be on a vent then let me go, it's not giving up to not want to step into the vortex of medical care.
Yep. In the case that I'm terminal, death would be infinitely preferable to this unending "medical care" hellscape.
posted by blucevalo at 7:14 AM on July 20, 2016 [1 favorite]
Yep. In the case that I'm terminal, death would be infinitely preferable to this unending "medical care" hellscape.
posted by blucevalo at 7:14 AM on July 20, 2016 [1 favorite]
My 62-yo father just died a few weeks ago in a medicaid facility in CO (his organs finally failed after years of drug and alcohol abuse).
It was clear they were doing their best there, but they were immensely understaffed and disorganized. The bathroom was filthy, the sheets were threadbare. It went as well as could be expected; it was all over quite quickly, he had a DNR and donated his body to science. But if he'd had access to adequate medical care and mental health counseling over the past decades, this all could have gone down much differently. Had he started dialysis several years ago, for example, his various conditions could have been treated.
As it was, he died in pain in a dingy shared bedroom in a place he didn't want to be. That this is a usual expectation for many of us is not something I feel good about.
posted by aspersioncast at 9:10 AM on July 20, 2016 [1 favorite]
It was clear they were doing their best there, but they were immensely understaffed and disorganized. The bathroom was filthy, the sheets were threadbare. It went as well as could be expected; it was all over quite quickly, he had a DNR and donated his body to science. But if he'd had access to adequate medical care and mental health counseling over the past decades, this all could have gone down much differently. Had he started dialysis several years ago, for example, his various conditions could have been treated.
As it was, he died in pain in a dingy shared bedroom in a place he didn't want to be. That this is a usual expectation for many of us is not something I feel good about.
posted by aspersioncast at 9:10 AM on July 20, 2016 [1 favorite]
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posted by mumimor at 11:43 AM on July 18, 2016 [8 favorites]