The best care that money can buy?
September 26, 2014 8:20 AM Subscribe
She was determined to fulfill her father’s dearest wish, the wish so common among frail, elderly people: to die at home. But it seemed as if all the forces of the health care system were against her — hospitals, nursing homes, home health agencies, insurance companies, and the shifting crosscurrents of public health care spending. The NYT reports in depth on a single case, a snapshot of the typical end-of-life care situation in the United States. A worthwhile but disturbing long read, potentially very upsetting if you've lost a loved one in a similar managed care setting.
The funeral home director told her the deep pressure ulcers on her father’s body were the worst he had ever seen. The records she obtained showed that in the last year of his life, his care cost at least a million dollars. Was that the best, she wondered, that a million dollars could buy?
To go with it, a journal article:
"The Revolving Door Of Re-hospitalization From Skilled Nursing Facilities", Mor et al. 2010, Health Affairs, 29, 57.
"Almost one-fourth of Medicare beneficiaries discharged from the hospital to a skilled nursing facility were readmitted to the hospital within thirty days; this cost Medicare $4.34 billion in 2006 [...] Revising these incentives could achieve major savings for providers and improved quality of life for beneficiaries."
The funeral home director told her the deep pressure ulcers on her father’s body were the worst he had ever seen. The records she obtained showed that in the last year of his life, his care cost at least a million dollars. Was that the best, she wondered, that a million dollars could buy?
To go with it, a journal article:
"The Revolving Door Of Re-hospitalization From Skilled Nursing Facilities", Mor et al. 2010, Health Affairs, 29, 57.
"Almost one-fourth of Medicare beneficiaries discharged from the hospital to a skilled nursing facility were readmitted to the hospital within thirty days; this cost Medicare $4.34 billion in 2006 [...] Revising these incentives could achieve major savings for providers and improved quality of life for beneficiaries."
It was the aides who mattered most and earned the least, Ms. Stefanides reflected.
There's the underlying problem with this country, in one sentence. The people whose work matters the most always earn the least, and the ones doing all the damage earn the most.
posted by jbickers at 8:40 AM on September 26, 2014 [30 favorites]
There's the underlying problem with this country, in one sentence. The people whose work matters the most always earn the least, and the ones doing all the damage earn the most.
posted by jbickers at 8:40 AM on September 26, 2014 [30 favorites]
I often resent, being a 70s kid, having grown up and continuing to live in the baby boomers' world. I know many of you feel exactly the same way.
But I will always be thankful for the fights that generation has had to take on, and continues to take on, and hope that some real reform of end-of-life care comes about as the critical mass of that generation goes through the last part of their lives and discovers how horrible our current state of affairs truly is. If I am fortunate enough to survive mostly intact into my dotage, I will be the beneficiary of their efforts.
posted by LooseFilter at 8:44 AM on September 26, 2014 [4 favorites]
But I will always be thankful for the fights that generation has had to take on, and continues to take on, and hope that some real reform of end-of-life care comes about as the critical mass of that generation goes through the last part of their lives and discovers how horrible our current state of affairs truly is. If I am fortunate enough to survive mostly intact into my dotage, I will be the beneficiary of their efforts.
posted by LooseFilter at 8:44 AM on September 26, 2014 [4 favorites]
This system, like everything else in the US, is designed to make money, period, full-stop. Whether you heal or die is secondary, and most often the sole concern of the lowest paid people in the room, as jbickers mentions.
posted by nevercalm at 8:44 AM on September 26, 2014 [2 favorites]
posted by nevercalm at 8:44 AM on September 26, 2014 [2 favorites]
How are we ever going to fix this system?
I don't believe the system in the USA is fixable anymore. For anything to change, you'd need a filibuster-proof majority in both House and Senate to create a national single-payer healthcare system that individual states cannot opt out of. And a President who won't veto, or enough votes in favour to override a veto.
The way things seem to stand now, it looks like decades will pass before that's even a possibility. Which isn't to say give up, but I think things are going to get a hell of a lot worse before they get better.
posted by feckless fecal fear mongering at 8:53 AM on September 26, 2014 [6 favorites]
I don't believe the system in the USA is fixable anymore. For anything to change, you'd need a filibuster-proof majority in both House and Senate to create a national single-payer healthcare system that individual states cannot opt out of. And a President who won't veto, or enough votes in favour to override a veto.
The way things seem to stand now, it looks like decades will pass before that's even a possibility. Which isn't to say give up, but I think things are going to get a hell of a lot worse before they get better.
posted by feckless fecal fear mongering at 8:53 AM on September 26, 2014 [6 favorites]
How are we ever going to fix this system?
Well, if you ask a good number of Republicans, they'll tell you the answer is to either fully privatize Medicare and Medicaid, or eliminate them altogether. Of course, that's their answer to everything.
For anything to change, you'd need a filibuster-proof majority in both House and Senate to create a national single-payer healthcare system that individual states cannot opt out of.
There's a more-or-less not-impossible chance the next Congress will be veto-proof. Unfortunately, it will be in the favor of the above-mentioned Republicans. If this happens, things will certainly get a lot, lot worse.
posted by Thorzdad at 9:01 AM on September 26, 2014
Well, if you ask a good number of Republicans, they'll tell you the answer is to either fully privatize Medicare and Medicaid, or eliminate them altogether. Of course, that's their answer to everything.
For anything to change, you'd need a filibuster-proof majority in both House and Senate to create a national single-payer healthcare system that individual states cannot opt out of.
There's a more-or-less not-impossible chance the next Congress will be veto-proof. Unfortunately, it will be in the favor of the above-mentioned Republicans. If this happens, things will certainly get a lot, lot worse.
posted by Thorzdad at 9:01 AM on September 26, 2014
The NPR Program On Point had a guest on talking about the Institute of Medicine report, and I thought it was overall a very unsatisfying interview with a lot of empty statements and not a lot of substance or meaningful recommendations for change. This article is a much, much better explanation of the problem, both morally and financially.
posted by muddgirl at 9:04 AM on September 26, 2014
posted by muddgirl at 9:04 AM on September 26, 2014
I hope that assisted suicide becomes legal where I live, when I'm old and frail. What happened to Mr. Andrey is literally a fate worse than death. Talk about factory farms for the elderly, where every last penny that can be wrung from them, is - and none of it going to the people who actually do the hard work (as Ms. Stefanides noted).
And for everyone who thinks that having caring adult children is the solution - no elderly parent could ask for a more devoted daughter than Ms. Stefanides, and Mr. Andrey still suffered horribly.
I do not know if the political will to do anything constructive about end-of-life care is there. My own solution is quite personal, and involves the same one that Ezekiel Emmanuel has chosen (previously) - palliative care only after a certain age. Soylent Green would be a better fate than that suffered by Mr. Andrey, and thousands of other old people.
posted by Rosie M. Banks at 9:58 AM on September 26, 2014 [4 favorites]
And for everyone who thinks that having caring adult children is the solution - no elderly parent could ask for a more devoted daughter than Ms. Stefanides, and Mr. Andrey still suffered horribly.
I do not know if the political will to do anything constructive about end-of-life care is there. My own solution is quite personal, and involves the same one that Ezekiel Emmanuel has chosen (previously) - palliative care only after a certain age. Soylent Green would be a better fate than that suffered by Mr. Andrey, and thousands of other old people.
posted by Rosie M. Banks at 9:58 AM on September 26, 2014 [4 favorites]
Christ! I just spent the better part of a decade in this situation. I couldn't even read the whole thing. I knew how it would end. First my Mom at 93 with the final stages of Alzheimer's cut mercifully short by a stroke. That was home hospice. I sat there and watched her die, gasping like a fish out of water. Then my Dad this past May, simply from being 100 years old. My wife, myself and a caregiver kept him at home until he finally hit the "failure to thrive" stage and it was beyond us to care for him. Austin Hospice was a godsend in both instances but that is simply paliative, end of life care. For the grinding years leading up to that point you're pretty much on your own.
I'm relatively certain there is no governmental or political solution to this problem for the country. All government at all levels is effectively in "regulatory capture" to wealth in the US. Therefore I am crafting my own solution. Since genetically I may be predisposed to dementia I will prefer self-administered euthanasia, at the proper time, to prevent descending yet again into the hellish situation I have witnessed my parents, my wife and myself suffer this past decade. I will never willingly subject my own family to that. They know it and agree. Hey, when your quality of life approaches zero, why are you still hanging around?
posted by jim in austin at 9:59 AM on September 26, 2014 [6 favorites]
I'm relatively certain there is no governmental or political solution to this problem for the country. All government at all levels is effectively in "regulatory capture" to wealth in the US. Therefore I am crafting my own solution. Since genetically I may be predisposed to dementia I will prefer self-administered euthanasia, at the proper time, to prevent descending yet again into the hellish situation I have witnessed my parents, my wife and myself suffer this past decade. I will never willingly subject my own family to that. They know it and agree. Hey, when your quality of life approaches zero, why are you still hanging around?
posted by jim in austin at 9:59 AM on September 26, 2014 [6 favorites]
For anything to change, you'd need a filibuster-proof majority in both House and Senate to create a national single-payer healthcare system that individual states cannot opt out of.
...but Medicare IS a national single-payer healthcare system that individual states cannot opt out of. The catch is that you have to be 65 or older. The other catch is that the government is timid about using its leverage to drive down the price of medical products and services.
The healthcare industry is a difficult one to fight when it employs 10% of the US workforce. The oil industry, by comparison, employs about 6%.
I haven't read the article yet, but FWIW, the ACA was supposed to fix this problem by reforming Medicare so that providers are paid for good patient outcomes rather than services. The implication is that the ACA still has loopholes that need to be closed.
posted by droro at 10:01 AM on September 26, 2014 [5 favorites]
...but Medicare IS a national single-payer healthcare system that individual states cannot opt out of. The catch is that you have to be 65 or older. The other catch is that the government is timid about using its leverage to drive down the price of medical products and services.
The healthcare industry is a difficult one to fight when it employs 10% of the US workforce. The oil industry, by comparison, employs about 6%.
I haven't read the article yet, but FWIW, the ACA was supposed to fix this problem by reforming Medicare so that providers are paid for good patient outcomes rather than services. The implication is that the ACA still has loopholes that need to be closed.
posted by droro at 10:01 AM on September 26, 2014 [5 favorites]
I don't believe the system in the USA is fixable anymore.
Depends on what you mean by fixable. Abolish government health insurance and forbid employers from offering insurance as part of the package. Watch the cost of healthcare plummet.
I didn't say it would be nice. But then, neither is what we've got.
(On a more serious note, it's kind of silly to expect insurance to pay for minor cuts and bruises and inoculations. You don't hit up your house insurer for tuning up the furnace or replacing the windows.)
the government is timid about using its leverage to drive down the price of medical products and services.
Timid? Maybe. Also indifferent. They're not spending their money, so who the hell cares? Thus my modest suggestion above.
posted by IndigoJones at 10:08 AM on September 26, 2014 [2 favorites]
Depends on what you mean by fixable. Abolish government health insurance and forbid employers from offering insurance as part of the package. Watch the cost of healthcare plummet.
I didn't say it would be nice. But then, neither is what we've got.
(On a more serious note, it's kind of silly to expect insurance to pay for minor cuts and bruises and inoculations. You don't hit up your house insurer for tuning up the furnace or replacing the windows.)
the government is timid about using its leverage to drive down the price of medical products and services.
Timid? Maybe. Also indifferent. They're not spending their money, so who the hell cares? Thus my modest suggestion above.
posted by IndigoJones at 10:08 AM on September 26, 2014 [2 favorites]
...but Medicare IS a national single-payer healthcare system that individual states cannot opt out of. The catch is that you have to be 65 or older.
Right, so to expand that from seniors only to cradle-to-grave care, you'd need a filibuster-proof etc.
posted by feckless fecal fear mongering at 10:19 AM on September 26, 2014 [1 favorite]
Right, so to expand that from seniors only to cradle-to-grave care, you'd need a filibuster-proof etc.
posted by feckless fecal fear mongering at 10:19 AM on September 26, 2014 [1 favorite]
The really shitty thing is that you can't just take them home to die, even if they want to, even if they're asking to, even if they're begging you to. Because then someone's going to bring you up on elder abuse or neglect charges, even if you have a signed and notarized statement saying "I don't blame them if I die tomorrow." It's just awful.
I remember vividly being at my grandmother's bedside while she begged for people to just let her die. It was one of the most awful things I remember.
posted by corb at 10:20 AM on September 26, 2014 [9 favorites]
I remember vividly being at my grandmother's bedside while she begged for people to just let her die. It was one of the most awful things I remember.
posted by corb at 10:20 AM on September 26, 2014 [9 favorites]
The other catch is that the government is timid about using its leverage to drive down the price of medical products and services.
Actually I believe Medicare is statutorily prohibited from negotiating lower prices. Why? Because they have huge market leverage and that would hurt profits...
posted by jim in austin at 10:27 AM on September 26, 2014 [3 favorites]
Actually I believe Medicare is statutorily prohibited from negotiating lower prices. Why? Because they have huge market leverage and that would hurt profits...
posted by jim in austin at 10:27 AM on September 26, 2014 [3 favorites]
Medicare IS a national single-payer healthcare system that individual states cannot opt out of. The catch is that you have to be 65 or older.
There's an interesting exception. If someone has a problem with their kidneys and requires dialysis, then they are eligible for Medicare and receive the same coverage. This provides care for kidney patients of any age.
So one political option is to just start adding diseases and conditions for Medicare eligibility. Add them one by one. Eventually, the US will have single-payer and no one will notice that it even happened.
posted by honestcoyote at 10:33 AM on September 26, 2014 [6 favorites]
There's an interesting exception. If someone has a problem with their kidneys and requires dialysis, then they are eligible for Medicare and receive the same coverage. This provides care for kidney patients of any age.
So one political option is to just start adding diseases and conditions for Medicare eligibility. Add them one by one. Eventually, the US will have single-payer and no one will notice that it even happened.
posted by honestcoyote at 10:33 AM on September 26, 2014 [6 favorites]
On a more serious note, it's kind of silly to expect insurance to pay for minor cuts and bruises and inoculations.
With the minor counterexample we might call "The Entire Rest of the World."
posted by ROU_Xenophobe at 10:50 AM on September 26, 2014 [11 favorites]
With the minor counterexample we might call "The Entire Rest of the World."
posted by ROU_Xenophobe at 10:50 AM on September 26, 2014 [11 favorites]
The patient identified in this article did not want to die (ie, not a euthanasia situation), he just wanted to be home while he was dying. It wasn't an issue of a lack of coverage, either - the patient was covered by Medicare and Medicaid.
That's one of the things I thought was inadequately addressed in the On Point interview with one of the co-chairs of the Institute of Medicine panel. The chair kept talking about encouraging patient choice through living wills, advanced directives, and Physician Directives, and that's all fine, but in this case "patient choice" seems like a huge screen for "the system doesn't give a shit what you want, they just want those sweet federal dollars." I hope this report encourges a legislative change in Medicare/Medicaid allocations, but I'm not too hopeful.
posted by muddgirl at 10:54 AM on September 26, 2014 [3 favorites]
That's one of the things I thought was inadequately addressed in the On Point interview with one of the co-chairs of the Institute of Medicine panel. The chair kept talking about encouraging patient choice through living wills, advanced directives, and Physician Directives, and that's all fine, but in this case "patient choice" seems like a huge screen for "the system doesn't give a shit what you want, they just want those sweet federal dollars." I hope this report encourges a legislative change in Medicare/Medicaid allocations, but I'm not too hopeful.
posted by muddgirl at 10:54 AM on September 26, 2014 [3 favorites]
Depends on what you mean by fixable. Abolish government health insurance and forbid employers from offering insurance as part of the package. Watch the cost of healthcare plummet.
All evidence points to exactly the opposite happening.
I didn't say it would be nice. But then, neither is what we've got.
It would, actually, be quite a bit nicer. Everything from costs to quality of life to child mortality/life expectancy, especially in proportion to money spent, would see improvement.
posted by zombieflanders at 11:02 AM on September 26, 2014 [3 favorites]
All evidence points to exactly the opposite happening.
I didn't say it would be nice. But then, neither is what we've got.
It would, actually, be quite a bit nicer. Everything from costs to quality of life to child mortality/life expectancy, especially in proportion to money spent, would see improvement.
posted by zombieflanders at 11:02 AM on September 26, 2014 [3 favorites]
Thank goodness we don't have any death panels to work this stuff out. Thanks Republicans!
posted by Reverend John at 11:18 AM on September 26, 2014 [3 favorites]
posted by Reverend John at 11:18 AM on September 26, 2014 [3 favorites]
...but Medicare IS a national single-payer healthcare system that individual states cannot opt out of.
Except Medicare doesn't cover everything. You need supplemental insurance to cover things Medicare doesn't. And, then there's the infamous out-of-pocket donut-hole that seniors have to deal with every year.
Still, it's better than nothing.
posted by Thorzdad at 11:20 AM on September 26, 2014 [1 favorite]
Except Medicare doesn't cover everything. You need supplemental insurance to cover things Medicare doesn't. And, then there's the infamous out-of-pocket donut-hole that seniors have to deal with every year.
Still, it's better than nothing.
posted by Thorzdad at 11:20 AM on September 26, 2014 [1 favorite]
All evidence points to exactly the opposite happening.
Not sure I'm reading you right. All evidence is that it is not happening or that it would not happen?
posted by IndigoJones at 11:21 AM on September 26, 2014
Not sure I'm reading you right. All evidence is that it is not happening or that it would not happen?
posted by IndigoJones at 11:21 AM on September 26, 2014
Except Medicare doesn't cover everything. You need supplemental insurance to cover things Medicare doesn't.
So what kind of insurance do I need to purchase to avoid this fate?
posted by exhilaration at 11:59 AM on September 26, 2014
So what kind of insurance do I need to purchase to avoid this fate?
posted by exhilaration at 11:59 AM on September 26, 2014
So what kind of insurance do I need to purchase to avoid this fate?
Medicare Part C
Medicare Part D
posted by jim in austin at 12:18 PM on September 26, 2014 [2 favorites]
Medicare Part C
Medicare Part D
posted by jim in austin at 12:18 PM on September 26, 2014 [2 favorites]
"Finally, in spring 2012, when he was showing signs of dementia, Kateri declared him a permanent resident and moved to take his whole income."
Oh my god. That is revolting. These people halfass care and then make a grab for the money the second they can.
posted by bitter-girl.com at 2:26 PM on September 26, 2014 [3 favorites]
Oh my god. That is revolting. These people halfass care and then make a grab for the money the second they can.
posted by bitter-girl.com at 2:26 PM on September 26, 2014 [3 favorites]
I'm with jim in Austin, and sir Pratchett. I will gladly drink the hemlock rather than live and die like this.
posted by dejah420 at 4:32 PM on September 26, 2014 [2 favorites]
posted by dejah420 at 4:32 PM on September 26, 2014 [2 favorites]
I don't believe the system in the USA is fixable anymore. For anything to change, you'd need a filibuster-proof majority in both House and Senate to create a national single-payer healthcare system that individual states cannot opt out of. And a President who won't veto, or enough votes in favour to override a veto.
It isn't. And it's incredibly freeing realizing it. There's a moment of letting it go, a catharsis when you realize you don't need to fight for what's right anymore.
We're going to keep spending more and more on law enforcement, and prisons, and less and less on infrastructure and other social services. But it is what it is.
Our healthcare system doesn't take individual desires and wishes into account, it's run by accountants and lawyers.
So it goes.
posted by formless at 5:23 PM on September 26, 2014 [2 favorites]
It isn't. And it's incredibly freeing realizing it. There's a moment of letting it go, a catharsis when you realize you don't need to fight for what's right anymore.
We're going to keep spending more and more on law enforcement, and prisons, and less and less on infrastructure and other social services. But it is what it is.
Our healthcare system doesn't take individual desires and wishes into account, it's run by accountants and lawyers.
So it goes.
posted by formless at 5:23 PM on September 26, 2014 [2 favorites]
Here's the thing. Medicare DOES NOT PAY for non-medical home care (like help getting up, help toiletting, help bathing, help dressing, help feeding oneself, help changing the tv channel, etc.) and if you think it does, you're gonna be up shit creek when you need it for real. Lots of old people don't need Actual Medical Care but do need help with the activities of daily living. Now, if you're poor and want home nursing care (for the activities of daily living as listed above), medicaid can help pay for this service. But, if you are non-poor, you're on your own. Hope you've got a fat wallet, 'cause that shit is expensive.
My grandma died at 98, at home, after four years of home-health-care regarding the activities listed above and more -- sometimes there was therapy for walking, wound care, etc. but mostly it was help her get up, bathe her, get her dressed, see to it that she got some breakfast, keep her company (and play step-n-fetchit) until lunch-ish, cook her lunch and feed it to her, toilet her as necessary. For the bulk of that time, we had morning help from 8 am to noon or 1 pm, so that our more-permanent caregiver (my cousin, whom we paid just-below the annual "gift" limit so that it was tax-free income) could get a latte, run errands, and have four hours to herself and her baby every day. As grandma degraded and needed more care, we added her daughter (a retired R.N.) to the "gift" payment plan for her 12K per year of "gift" tax-free wages and four more hours a day of care for grandma. Grandma died in about 2008, so my prices are slightly out of date.
Keeping grandma at home, under these circumstances, cost on the close order of $80K per year, an amount that grandma (not poor) could afford without undue strain. Allowing grandma to die at-home, in reasonable comfort and in surroundings she liked cost her estate on the close order of $320,000 and had my cousin absolutely hysterical in tears more than once because grandma was exceedingly sharp-tongued, and very, very cruel at times. And, I'd like to point out, this was the cheap option. Nursing home care for that interval would have run to twice what we paid.
We went into this game plan with a living will, an iron-willed old lady with a firm grip on her sanity, a substantial extended family with a variety of skills, extensive knowledge of nursing homes (the R. N. was also a nursing home administrator before she retired), and a good-sized pile of money. We won, but having played, we are all now fully aware that the game is rigged so that most people lose, dying alone and uncomfortable in a strange place after several rounds of hospital-nursing home roulette.
They kept trying to get us to play that game and it was only with all of our efforts -- the iron will of my entirely-sane-to-the-end grandma, the nursing home experience of my aunt the retired R.N., the steely determination to keep going that was unexpectedly contained inside my cousin Heather, the legal posturing of my younger brother the attorney, the steady income for her needs from the landlord business (much of grandma's estate was tied up in buildings and coming up with the liquid 80K per year to fund grandma from the ongoing business without destroying it or shorting her care was part of my job), yadda yadda yadda that we did not succumb to hospital-nursing home roulette. And, with all of our advantages -- advantages that most families do not have -- we still found it exhausting, both emotionally and financially draining.
posted by which_chick at 6:37 PM on September 26, 2014 [16 favorites]
My grandma died at 98, at home, after four years of home-health-care regarding the activities listed above and more -- sometimes there was therapy for walking, wound care, etc. but mostly it was help her get up, bathe her, get her dressed, see to it that she got some breakfast, keep her company (and play step-n-fetchit) until lunch-ish, cook her lunch and feed it to her, toilet her as necessary. For the bulk of that time, we had morning help from 8 am to noon or 1 pm, so that our more-permanent caregiver (my cousin, whom we paid just-below the annual "gift" limit so that it was tax-free income) could get a latte, run errands, and have four hours to herself and her baby every day. As grandma degraded and needed more care, we added her daughter (a retired R.N.) to the "gift" payment plan for her 12K per year of "gift" tax-free wages and four more hours a day of care for grandma. Grandma died in about 2008, so my prices are slightly out of date.
Keeping grandma at home, under these circumstances, cost on the close order of $80K per year, an amount that grandma (not poor) could afford without undue strain. Allowing grandma to die at-home, in reasonable comfort and in surroundings she liked cost her estate on the close order of $320,000 and had my cousin absolutely hysterical in tears more than once because grandma was exceedingly sharp-tongued, and very, very cruel at times. And, I'd like to point out, this was the cheap option. Nursing home care for that interval would have run to twice what we paid.
We went into this game plan with a living will, an iron-willed old lady with a firm grip on her sanity, a substantial extended family with a variety of skills, extensive knowledge of nursing homes (the R. N. was also a nursing home administrator before she retired), and a good-sized pile of money. We won, but having played, we are all now fully aware that the game is rigged so that most people lose, dying alone and uncomfortable in a strange place after several rounds of hospital-nursing home roulette.
They kept trying to get us to play that game and it was only with all of our efforts -- the iron will of my entirely-sane-to-the-end grandma, the nursing home experience of my aunt the retired R.N., the steely determination to keep going that was unexpectedly contained inside my cousin Heather, the legal posturing of my younger brother the attorney, the steady income for her needs from the landlord business (much of grandma's estate was tied up in buildings and coming up with the liquid 80K per year to fund grandma from the ongoing business without destroying it or shorting her care was part of my job), yadda yadda yadda that we did not succumb to hospital-nursing home roulette. And, with all of our advantages -- advantages that most families do not have -- we still found it exhausting, both emotionally and financially draining.
posted by which_chick at 6:37 PM on September 26, 2014 [16 favorites]
Yep, which_chick is correct. Medicare does not pay for extended care, also known as warehousing. My Dad burned through 4/5's of his net worth in his final years and he had Social Security, Medicare, AT&T healthcare and an AT&T pension. If you have access to an extended care option through work or wherever, take it. Whatever it costs, it will be dirt cheap in the long run and will save your loved ones from a ton of grief and possible debt. If you're one of the little people, the system is not designed to work for you. You have to cover your own ass, as best you can...
posted by jim in austin at 8:00 PM on September 26, 2014 [1 favorite]
posted by jim in austin at 8:00 PM on September 26, 2014 [1 favorite]
Loosefilter, thank you for recognizing that if/when this appalling situation does get better, it will indeed be because of the baby boomers, who (with their children) in their masses will encounter it soon, and who will raise a righteous stink and demand reform. I'm pulling for us too. I don't think we're done changing the world.
Which_ chick, I went into this game with a demented but otherwise healthy widowed 95-year-old mother; no family other than myself (and I am neither a lawyer or a nurse); no knowledge of nursing homes, private-pay independent living, assisted living, memory care, Medi -caid or -care, or the senior-care racket; and her minuscule income from her husband's trust and SS. My own income is less than I made 20 years ago (thanks, middle-class wage stagnation!) that I am trying desperately to save for my own old age when I am forced to stop working (retirement? Hah! Don't make me laugh).
One thing I am grateful for is that my mother will never know that all the money she painstakingly saved up all her life for me to inherit (and it's not very much) will never get to me. It will go to the eldercare industry owners and investors, not to the ones who actually care for my mother. And I am one of the lucky ones - at least I am employed and a property owner. My own savings can go to caring for my mom if they have to. I can't even bear to think about how less fortunate people cannot care for their elderly.
I have been dealing with this/coming to the realization that I and she are truly fucked for about the past six months, since her husband died.
I am fucking terrified, not just for my mother's end of life but for my own, and I cannot remember the last time I slept through the night.
posted by caryatid at 8:36 PM on September 26, 2014
Which_ chick, I went into this game with a demented but otherwise healthy widowed 95-year-old mother; no family other than myself (and I am neither a lawyer or a nurse); no knowledge of nursing homes, private-pay independent living, assisted living, memory care, Medi -caid or -care, or the senior-care racket; and her minuscule income from her husband's trust and SS. My own income is less than I made 20 years ago (thanks, middle-class wage stagnation!) that I am trying desperately to save for my own old age when I am forced to stop working (retirement? Hah! Don't make me laugh).
One thing I am grateful for is that my mother will never know that all the money she painstakingly saved up all her life for me to inherit (and it's not very much) will never get to me. It will go to the eldercare industry owners and investors, not to the ones who actually care for my mother. And I am one of the lucky ones - at least I am employed and a property owner. My own savings can go to caring for my mom if they have to. I can't even bear to think about how less fortunate people cannot care for their elderly.
I have been dealing with this/coming to the realization that I and she are truly fucked for about the past six months, since her husband died.
I am fucking terrified, not just for my mother's end of life but for my own, and I cannot remember the last time I slept through the night.
posted by caryatid at 8:36 PM on September 26, 2014
Jesus christ the American healthcare system is fucking evil. Utterly revolting. I don't know how people aren't out in the streets rioting over the half-assed "health care" they are being bilked for.
posted by supercrayon at 8:55 PM on September 26, 2014 [3 favorites]
posted by supercrayon at 8:55 PM on September 26, 2014 [3 favorites]
I'm sitting in a nursing home getting rehab care following a pretty major foot/ankle surgery. If people realized what it was actually like inside one of these places everyone would be rioting.
The under staffing alone is ridiculous. Last week, I spent four hours stuck in my wheelchair as there was no one able to remake my bed. FOUR hours. I'm not supposed to be letting my foot dangle that long, but what could I do?
I stripped the bed, wiped it down, and had it ready for them to just put a sheet on it, yet they are so understaffed that I had to wait.
It took her two minutes, when someone finally came in, and then I was able to get myself back into the bed so I could put my foot up.
The cost of the room alone is 260/per night. This doesn't include therapy, medications, food, wound care, rental of the bed or trapeze.
Luckily, we have insurance that is covering part of it. Even though we have to beg, on a weekly basis, for them to do so.
A lot of the weight loss issues for elderly in these homes is due to the quality of the food. Who wants to eat burnt, processed meat patty covered in gravy from a powdered mix, mashed potatoes, and overly cooked (to the point of being mush) canned vegetables?
I have not seen a fresh vegetable or piece of fruit on a tray since I've been here. My husband brought me an orange last week and I cried because I was so happy to have it.
The treatment, the food, the under staffing, all of that I'm seeing as someone who is completely with it. I am terrified of what those who aren't all there are dealing with.
posted by SuzySmith at 2:22 AM on September 27, 2014 [10 favorites]
The under staffing alone is ridiculous. Last week, I spent four hours stuck in my wheelchair as there was no one able to remake my bed. FOUR hours. I'm not supposed to be letting my foot dangle that long, but what could I do?
I stripped the bed, wiped it down, and had it ready for them to just put a sheet on it, yet they are so understaffed that I had to wait.
It took her two minutes, when someone finally came in, and then I was able to get myself back into the bed so I could put my foot up.
The cost of the room alone is 260/per night. This doesn't include therapy, medications, food, wound care, rental of the bed or trapeze.
Luckily, we have insurance that is covering part of it. Even though we have to beg, on a weekly basis, for them to do so.
A lot of the weight loss issues for elderly in these homes is due to the quality of the food. Who wants to eat burnt, processed meat patty covered in gravy from a powdered mix, mashed potatoes, and overly cooked (to the point of being mush) canned vegetables?
I have not seen a fresh vegetable or piece of fruit on a tray since I've been here. My husband brought me an orange last week and I cried because I was so happy to have it.
The treatment, the food, the under staffing, all of that I'm seeing as someone who is completely with it. I am terrified of what those who aren't all there are dealing with.
posted by SuzySmith at 2:22 AM on September 27, 2014 [10 favorites]
Even more significantly, you're seeing it from the standpoint of someone who knows she's going to get to go home. Think of the difference that makes.
I'm sorry about the poor care you're getting but I'm glad you're able to write about it. It's incredibly hard on the aides who are giving the care to be so understaffed - the ones who care (most of them) go home with stomach aches and migraines because they can't give adequate care to the residents and they hate that; the ones who don't care, those to whom it's just another job, don't last long, making the staffing even worse. I remember cussing about the wages but then some very wise lady told me that the day they started paying aides what they're worth is the day people start working for the money instead of for the caring - and she hoped to be dead before that. She was. She had a good point, but the places haven't improved as far as I can see.
Because you're in Rehab, you at least are getting food you can identify; in the long-term care wing they get mostly pureed green and pureed brown, morning, noon and night.
Get well soon and get out of there!
posted by aryma at 3:22 AM on September 27, 2014 [2 favorites]
I'm sorry about the poor care you're getting but I'm glad you're able to write about it. It's incredibly hard on the aides who are giving the care to be so understaffed - the ones who care (most of them) go home with stomach aches and migraines because they can't give adequate care to the residents and they hate that; the ones who don't care, those to whom it's just another job, don't last long, making the staffing even worse. I remember cussing about the wages but then some very wise lady told me that the day they started paying aides what they're worth is the day people start working for the money instead of for the caring - and she hoped to be dead before that. She was. She had a good point, but the places haven't improved as far as I can see.
Because you're in Rehab, you at least are getting food you can identify; in the long-term care wing they get mostly pureed green and pureed brown, morning, noon and night.
Get well soon and get out of there!
posted by aryma at 3:22 AM on September 27, 2014 [2 favorites]
This puts me in mind of this article, which I don't think has shown up around here (I guarantee something in that article will piss you off, I definitely don't agree with everything the author has to say and I think he is suffering from wishful thinking regarding the degree to which he'll be allowed to carry out his plan to die young(ish) from benign self-neglect. Still, it is worth a thoughtful read).
I will forever wonder to what degree my father's neglect of his symptoms of heart disease, his failure to quit smoking or amend his diet in a significant way, was by an intentional design that he kept quiet from everyone, perhaps even himself. He certainly suffered fear and anxiety over his condition, and worried about my mother's life after he went...
And yet. He was a rural pastor who served one farming community for some 25 years of his career. He was a man who took the duty of pastoral care deeply to heart, and there was no sub- or co- pastor, or visitation pastor to share the work (indeed like many country ministers he had two churches under his charge). So he attended the last months and weeks and days, the deaths and the family aftermaths. He knew this world, the hospitals and nursing homes, inside and out. He put so many of the pillars of the community- men and women who were ten, twenty years his senior when he came into those congregations - in the ground. His leaving the house after the late night phone call to see someone off was a steady counterpoint of my youth. He had an instinct for when people would go. "Harold is not doing so good", he would say after a hospital visit. A day, three later they would be gone. For more than a few he was the most present and reliable advocate they had in the system.
And in the end he suffered with the acute heart disease perhaps seven years, of which I think he spent less than a month total in the hospital. Several days or a week each after the collapses that finally led to a diagnosis probably years too late to do anything about it except slow it down with drugs, to get the full diagnosis that confirmed his vascular system to be so compromised that there were no surgical options, when he had the pacemaker implanted. After the second to last heart attack: less than three days.
It wasn't so easy on the family, the day before the night he died the doctors were as optimistic as you could expect with a patient with terminal, incurable congestive heart failure, with talk of adjusting medication, getting him well enough to implant a defibrillator. Certainly no talk of gathering us all around. It literally only occurred to me as I wrote this, what he said to me the last time I spoke to him on the telephone, the day before. "I'm not doing so good," he said from his hospital bed. "I'd like to get out of here."
Then a phone call at 2 am. He was completely alone when he went, which is hard to know, though it kind of fit if you knew him. Gone probably in minutes, with a DNR. And who would trade his death for the nightmare described in this article? You better believe I've started thinking about the degree to which such an outcome could be self-engineered.
posted by nanojath at 10:43 AM on September 27, 2014 [4 favorites]
I will forever wonder to what degree my father's neglect of his symptoms of heart disease, his failure to quit smoking or amend his diet in a significant way, was by an intentional design that he kept quiet from everyone, perhaps even himself. He certainly suffered fear and anxiety over his condition, and worried about my mother's life after he went...
And yet. He was a rural pastor who served one farming community for some 25 years of his career. He was a man who took the duty of pastoral care deeply to heart, and there was no sub- or co- pastor, or visitation pastor to share the work (indeed like many country ministers he had two churches under his charge). So he attended the last months and weeks and days, the deaths and the family aftermaths. He knew this world, the hospitals and nursing homes, inside and out. He put so many of the pillars of the community- men and women who were ten, twenty years his senior when he came into those congregations - in the ground. His leaving the house after the late night phone call to see someone off was a steady counterpoint of my youth. He had an instinct for when people would go. "Harold is not doing so good", he would say after a hospital visit. A day, three later they would be gone. For more than a few he was the most present and reliable advocate they had in the system.
And in the end he suffered with the acute heart disease perhaps seven years, of which I think he spent less than a month total in the hospital. Several days or a week each after the collapses that finally led to a diagnosis probably years too late to do anything about it except slow it down with drugs, to get the full diagnosis that confirmed his vascular system to be so compromised that there were no surgical options, when he had the pacemaker implanted. After the second to last heart attack: less than three days.
It wasn't so easy on the family, the day before the night he died the doctors were as optimistic as you could expect with a patient with terminal, incurable congestive heart failure, with talk of adjusting medication, getting him well enough to implant a defibrillator. Certainly no talk of gathering us all around. It literally only occurred to me as I wrote this, what he said to me the last time I spoke to him on the telephone, the day before. "I'm not doing so good," he said from his hospital bed. "I'd like to get out of here."
Then a phone call at 2 am. He was completely alone when he went, which is hard to know, though it kind of fit if you knew him. Gone probably in minutes, with a DNR. And who would trade his death for the nightmare described in this article? You better believe I've started thinking about the degree to which such an outcome could be self-engineered.
posted by nanojath at 10:43 AM on September 27, 2014 [4 favorites]
I keep thinking of this article: How Doctors Choose to Die
(Also keep thinking of this nursing home alternative. A pity Medicare won't pay for cruises. Possibly better care, definitely better food, and would be cheaper.)
I'm with you nanojath. I've also thought of ways this outcome could be self-engineered.
posted by honestcoyote at 3:06 PM on September 27, 2014 [2 favorites]
(Also keep thinking of this nursing home alternative. A pity Medicare won't pay for cruises. Possibly better care, definitely better food, and would be cheaper.)
I'm with you nanojath. I've also thought of ways this outcome could be self-engineered.
posted by honestcoyote at 3:06 PM on September 27, 2014 [2 favorites]
I work in an assisted living facility which has, in the past few years, become a home for elders with dementia. We have thirty beds. On the overnight shift--my shift--there are two people on: both are responsible for toileting residents, sweeping and mopping the floors, cleaning and setting the dining room tables, stocking closets, etc., etc. One of the two workers has to have a CRMA license; this person, usually me, also hands out meds.
Day shift comes on at 6:00 AM. One person takes the med cart, and the other two are responsible for ensuring all thirty residents are at their seat in the dining room by eight o'clock. If they fall behind and some residents aren't ready in time, they catch serious hell from the kitchen staff. Consequently, they spend much less time with each resident than they should. I've been told that they're unofficially allowed six minutes per resident.
Because there's so much pressure to get the residents to the dining room by eight o'clock, there is a lot of pressure on the night shift to get residents ready early--between 4:00-6:00 AM. For many months residents were being woken, dressed, and put back to bed during that window so that day shift would have an easier time. I contacted the long-term care ombudsman office to ask whether this was as problematic as it seemed to me; they assured me it was. Management has instituted a policy that third shift is to help residents get ready if and only if they are already awake and wanting to get up. I know damn well that some of my co-workers will wake people up to toilet them at 5:00 AM and convince them to get dressed; they have dementia and no concept of time, so why not, right? Maybe my co-workers are right, but it seems like a violation of my residents' dignity, so I adamantly refuse. I've gotten a really bad reputation at work for insisting that the practice stop. During shift report at 6:00 AM, when I'm describing how the night went, I'm usually asked "Is so-and-so up and dressed?" With a few exceptions I always say sheepishly, "No." The looks I get are awful. Day shift absolutely hates me.
On the up-side, I've had the opportunity to spend time with residents who were dying. I've given morphine to residents in their last days of life, and I've helped others navigate the transition into a world of dementia. I've sat on the floor trying to develop real trust and a meaningful relationship with someone who has forgotten how to wipe herself. I've had to find ways to help residents not be terrified by the shower. I've learned that a non-verbal resident with late-stage dementia--a woman who, by all accounts, seems entirely vacant--still responds well to "please" and "thank you".
In sum, I'm very thankful for my job, but yes, I'm also disgusted by much of what I see. (Although I feel a bit cheap mentioning it here, I can't help myself: I also owe $60k in student loans which will never, ever be paid off on my $12 per hour wage. And I'm the highest paid employee at my facility.)
posted by jwhite1979 at 11:04 PM on September 28, 2014 [3 favorites]
Day shift comes on at 6:00 AM. One person takes the med cart, and the other two are responsible for ensuring all thirty residents are at their seat in the dining room by eight o'clock. If they fall behind and some residents aren't ready in time, they catch serious hell from the kitchen staff. Consequently, they spend much less time with each resident than they should. I've been told that they're unofficially allowed six minutes per resident.
Because there's so much pressure to get the residents to the dining room by eight o'clock, there is a lot of pressure on the night shift to get residents ready early--between 4:00-6:00 AM. For many months residents were being woken, dressed, and put back to bed during that window so that day shift would have an easier time. I contacted the long-term care ombudsman office to ask whether this was as problematic as it seemed to me; they assured me it was. Management has instituted a policy that third shift is to help residents get ready if and only if they are already awake and wanting to get up. I know damn well that some of my co-workers will wake people up to toilet them at 5:00 AM and convince them to get dressed; they have dementia and no concept of time, so why not, right? Maybe my co-workers are right, but it seems like a violation of my residents' dignity, so I adamantly refuse. I've gotten a really bad reputation at work for insisting that the practice stop. During shift report at 6:00 AM, when I'm describing how the night went, I'm usually asked "Is so-and-so up and dressed?" With a few exceptions I always say sheepishly, "No." The looks I get are awful. Day shift absolutely hates me.
On the up-side, I've had the opportunity to spend time with residents who were dying. I've given morphine to residents in their last days of life, and I've helped others navigate the transition into a world of dementia. I've sat on the floor trying to develop real trust and a meaningful relationship with someone who has forgotten how to wipe herself. I've had to find ways to help residents not be terrified by the shower. I've learned that a non-verbal resident with late-stage dementia--a woman who, by all accounts, seems entirely vacant--still responds well to "please" and "thank you".
In sum, I'm very thankful for my job, but yes, I'm also disgusted by much of what I see. (Although I feel a bit cheap mentioning it here, I can't help myself: I also owe $60k in student loans which will never, ever be paid off on my $12 per hour wage. And I'm the highest paid employee at my facility.)
posted by jwhite1979 at 11:04 PM on September 28, 2014 [3 favorites]
Just seeing this thread in my feed prompted me to say:
If any of you are dealing with this now, please try looking into whether or not your relative ever served in the military. The Veterans Administration has some relatively inexpensive aid care/nursing home care, particularly compared with pretty much everything else out there on the market. It can save you a lot of money and sanity if they are eligible, and many are.
posted by corb at 10:18 AM on September 29, 2014 [1 favorite]
If any of you are dealing with this now, please try looking into whether or not your relative ever served in the military. The Veterans Administration has some relatively inexpensive aid care/nursing home care, particularly compared with pretty much everything else out there on the market. It can save you a lot of money and sanity if they are eligible, and many are.
posted by corb at 10:18 AM on September 29, 2014 [1 favorite]
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Records would show that her father’s case let the nursing home collect $682.48 a day from Medicare, about five times the cost of a day of home care.
The feeling when I read those words was like something being strangled into hopelessness. How are we ever going to fix this system?
posted by none of these will bring disaster at 8:32 AM on September 26, 2014 [9 favorites]