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How Dying Became A Multibillion-Dollar Industry
June 20, 2014 7:06 AM   Subscribe


 
It sounds like at least part of the problem is that it's tremendously difficult to access non-hospice at-home care for elderly or gravely ill but not dying people - the allure of these for-profit hospices must be in part that they claim to be able to offer this. I mean, it's not just that they are lying, it's that their lies are plausible because there is a real, unmet need. No one would put their frail parent in hospice care on a "maybe sorta kinda qualifies" basis if they didn't actually need help providing care.
posted by Frowner at 7:21 AM on June 20, 2014 [4 favorites]


My friend's mother is passing away this morning in a hospice. Cancer spread from lungs to brain and liver. My friend had run out of spoons to be able to take care of her, and it was getting close to the end. It was a Catholic hospice, so... I imagine it's not the same type of thing as this article. All I know is they treated her well, were there to help when needed and were affordable enough to not break the bank.
posted by symbioid at 7:26 AM on June 20, 2014 [1 favorite]


GO NON-PROFIT; AVOID FOR-PROFIT HOSPICE.

To give an example, an essential part of hospice is grief counseling. The For-Profits will take the very profitable medicare dollars to provide care, and then refer out the survivors to a nonprofit facility for grief counseling, because there's no money in it. Which also taxes the resources of the non-profit

Fuck'em.
posted by leotrotsky at 7:35 AM on June 20, 2014 [21 favorites]


Honestly, it's just like everything else...you have to shop around and do your homework. I know people don't want to do this because it's uncomfortable and unpleasant and sad, but it's places like this, and funeral homes and other end of life services that will smell you coming a mile away and pressure and guilt you into doing things you don't want to do or don't need to do.

I really want to start a service to help people navigate these important life decisions. Hospitals are pretty shitty at providing care for older people, too. And everyone needs an advocate in the hospital; sometimes family is just too emotional to be pragmatic.
posted by Kokopuff at 7:44 AM on June 20, 2014 [6 favorites]


Hospitals are pretty shitty at providing care for older people, too.

Health care in general is wretched toward the elderly. If you hit a certain age, that's it -- no one wants to treat you, but they don't want to let you out of their clutches, either. My grandmother is disabled, but she loves life and is otherwise in good health and is perfectly lucid. She has spent a lifetime contributing to the world, but now that she is of a certain age, it is as if she has become less worthy of treatment. It is as if the medical establishment in North America goes the extra mile to extend life -- but then takes every effort to make those extra years as painful and frustrating as possible.

Age discrimination is rampant as is discrimination against the physically disadvantaged (sick, dying, disabled) and any institution that is in that game needs to be closely examined. As someone who has to navigate through that system on a daily basis, I can tell you there is huge waste -- yet to actually treat people would be so much less expensive if it was done with the right checks and balances in place -- and that is a huge red flag that there is something rotten going on in those industries...
posted by Alexandra Kitty at 8:06 AM on June 20, 2014 [11 favorites]


This article seems incredible one-sided. I'm not saying abuses don't go on, and the abuse of public trust is horrendous. However most of the allegations are consistent of all or most health care providers and not specific to hospice care. Bilking insurance or medicare out of money? Everyone does that. Being cited for patient safety violations? Without specifying the severity - most hospitals are in violation of something every time they're inspected. The hospital my mom works at has been in violation of the local fire code multiple times for craps sake.

Saying that I'm all about fraud and abuse being exposed so good on the whistle-blowers for protecting patients, it's just that this article makes it sound like it's something specific to this kind of care instead of being symptomatic of widespread problems throughout the entire health care industry. This is why it's so evil to have health and profits mixed together.
posted by supercrayon at 8:53 AM on June 20, 2014 [7 favorites]


Health care in general is wretched toward the elderly. If you hit a certain age, that's it -- no one wants to treat you, but they don't want to let you out of their clutches, either. My grandmother is disabled, but she loves life and is otherwise in good health and is perfectly lucid. She has spent a lifetime contributing to the world, but now that she is of a certain age, it is as if she has become less worthy of treatment. It is as if the medical establishment in North America goes the extra mile to extend life -- but then takes every effort to make those extra years as painful and frustrating as possible.

Sorry, no, that's wrong. As a primary care doctor I can tell you that it is usually the unhealthiest most nihilistic and self-destructive older patients who seize up at the mention of a sane approach to end-of-life care. Weekend hospital rounds are the same amalgam of several dozen revolving door cases who see a conversation about hospice care as tantamount to euthanasia. Which makes some sense in that the poorly educated tend to make poor choices in life and are of limited capacity to manage a lot of things, including information and their own emotions.

But even in many other cases it is the adult children of these very frail elderly who won't back away from full care. If you expect a hospitalist or primary care doctor to risk their livelihood over a lawsuit from a disgruntled son or daughter because they think you didn't give mom or dad the full court press then you're naive.

Until there is a national consciousness-raising about the futility of intensive medical care in the last years of life this won't change. Hospice, for it's faults, is a massive, incredible and useful endeavor. Of course there's going to be a profit motive. We live in America.
posted by docpops at 9:08 AM on June 20, 2014 [20 favorites]


I hope this article doesn't scare anyone away from using hospice care for a loved one. It ended up being an amazing gift when the doctor supervising my mom's care recommended it. She finally got the one-on-one care that we could not afford and could not provide for her at home. She had younger-onset Alzheimer's and ended up living much longer than anyone expected. I'm glad the hospice services she had made her last years as comfortable as possible given her disease. The hospice we used was affiliated with a hospital. They still follow up and offer grief support services. They are amazing.
posted by missmerrymack at 9:29 AM on June 20, 2014 [1 favorite]


If you expect a hospitalist or primary care doctor to risk their livelihood over a lawsuit from a disgruntled son or daughter because they think you didn't give mom or dad the full court press then you're naive.

Very much agree.

The larger cultural thing going on here is that of unyielding, unending American entitlement. I've seen this much, much more clearly in my work in 3rd world contexts, where it is so exceedingly rare to actually see an elderly person, because few make it that long when everyone in your shitty third world country lives so collectively close to the edge. I mean think about it for a moment: hospice care is a 17 Billion dollar industry, all on it's own, for crying out loud. The largest private humanitarian NGOworking maxes out at about 2 billion dollars, for comparison's sake.
posted by allkindsoftime at 9:30 AM on June 20, 2014 [3 favorites]


Sorry, no, that's wrong.

No, sorry, that's right. I can show you lovely infection pictures of my grandmother's foot that were a direct result of that mentality you so glibly deny. I have taken her to the emergency, her family physician, and have nurses coming every other day to the house. They do nothing, but gripe, shrug their shoulders, waste money on dabbing saline soultion on a wound, patronize their elderly patients, and then bill for their uselessness.

And for the record, her foot started as a little inflamed when I sought medical intervention for her. My proactive intervention was met by the usual spit in the face. That cannot be denied or explained away.

People in the system are so wrapped up in their own little bubbles, they don't see what a menace they have become. No, it is not a good system just because you work in it.

It is that sort of attitude that has made the system a mess in the first place. We have people sticking their fingers in their ears as they close shut their eyes, thinking their apathy will somehow magically make their flawed denials right and make the detractors go away -- but it doesn't.

Shame on the system who have confused greed and aloofness for rationality and morality. The system has been hijacked by deniers and con artists -- not all of us choose to be blind or silent.
posted by Alexandra Kitty at 9:35 AM on June 20, 2014 [1 favorite]


Bah, hit post too soon.

The point I wast trying to get at is that we create whole industries to service those things we think we're entitled too, because our whole culture and generations of us have always grown up having, so why shouldn't we always continue to have...right up to the bitter end.

People expect that elongating their life just a few tenths of a percentage point longer is a fundamental human right, and they're willing to fight and even sue and ruin other people's lives in their zeal for gaining what little last breath they can for themselves and their loved ones. It's crazy.

If I live to an old age someday, I hope it's on a remote island with enough drugs to keep me pain free until the end. And that's all the care I want.
posted by allkindsoftime at 9:37 AM on June 20, 2014 [4 favorites]


Hospice was a godsend when my mom was dying. In her case, she died of cancer, and there was no doubt that she was dying and no way to prolong her life. And she wanted comfort care and that was it. Mom was able to die in her own home, free of pain, because of hospice.

When my time comes, if I don't die suddenly in my sleep, I want hospice and loads of drugs. I don't want to die in the hospital hooked up to machines.

I think in cases like the one in the OP, the problem is the "profit" motive and not the "hospice" motive. In a country like the US where medicine is for profit, then of course unscrupulous hospices - and other health providers! - are going to try to wring every last penny they can out of patients and families. The elderly and dying are cash cows to for-profits.
posted by Rosie M. Banks at 9:45 AM on June 20, 2014 [2 favorites]


Oh jeez, Huffpo, what a ridiculously unbalanced piece. I'm sure that the specific gripes and complaints you're discussing are real--but they're going to be there whether those people are receiving end of life care in hospitals or in hospices. It's not like hospitals are immune from profit-driven exploitation of the elderly. To focus on this as something specifically related to the hospice movement is just unbelievably counterproductive. All other things being equal, the hospice philosophy is just so much more sane as an approach to end-of-life care than anything that goes on in hospitals. This article just fuels the whole stupid "death panel" hysteria that makes people spend tens, even hundreds, of thousands of dollars in order to extend their lives by a few days while rendering those last days utterly miserable.
posted by yoink at 10:06 AM on June 20, 2014 [10 favorites]


Literally anything the Baby Boomers start to do (taking care of dying parents or dying themselves) is going to become a multi-billion-dollar industry.

And literally everything that provides basic government services (health care, school, incarceration) on a for-profit model is going to defraud or abuse.
posted by Eyebrows McGee at 10:16 AM on June 20, 2014 [9 favorites]


And literally everything that provides basic government services (health care, school, incarceration) on a for-profit model is going to defraud or abuse.

This needs to be written in 500-foot high flaming letters on the side of a mountain. I think there are four sectors of public need that should be protected from the profit motive as aggressively as possible: health care, education, national defense, and criminal justice. Three of those four are already deeply corrupted by the profit motive, and people are working as hard as they can to be sure that education joins the club.

Why is it so hard to see that the profit motive corrupts more surely and more consistently than any other possible influence or actor? (Yes, it spurs innovation and competitiveness, but only consistently works for the public good when it's on a very, very short leash.)

My experience with Hospice care, when my stepdad died way too young from cancer, was also exceptional. They were forthright and direct (and extraordinarily compassionate) at a time when my family really needed it.
posted by LooseFilter at 11:05 AM on June 20, 2014 [8 favorites]


AlexandraKitty,

I'm sorry for what your grandmother is going through, and perhaps her care is substandard. But quite often when someone has complex medical issues like a non-healing foot inffection that may be exactly the time to start having a sane conversation about managing pain and distress instead of unending hours of futile effort to manage an intractable medical issue. It's no wonder you are frustrated. I'm sorry for that. Your words and vehemence are not rare in the caregivers of the elderly. It may be that no one has actually sat down and taken the time (which they aren't paid for since it isn't a procedure) to explain why no amount of medical care is going to alter anything. I don't know. Good luck.
posted by docpops at 11:35 AM on June 20, 2014 [1 favorite]


Hospice isn't just about what people who are dying are "entitled" to - it's also about providing respite, help and relief to those caring for the dying. They provide a much cheaper alternative than dying in a hospital. They make us pay money, yes. But you know what? It's not like those people were dying alone uncared for. They were being cared for as part of unpaid women's work. Give me professionals any day of the week, and let the family enjoy (as much as possible) the little time left. Do your research and find a good hospice provider, but don't toss the good out with the bad.
posted by stoneweaver at 1:35 PM on June 20, 2014 [1 favorite]


I know people don't want to do this because it's uncomfortable and unpleasant and sad, but it's places like this, and funeral homes and other end of life services that will smell you coming a mile away and pressure and guilt you into doing things you don't want to do or don't need to do.

Agreed, but adding onto the discomfort, unpleasantness, and sadness is the grief and just plain exhaustion that caregivers suffer from. It's hard to make good decisions when you don't have the time or the money to really do research. Not to mention, for most of us, the first go-round we start off in total ignorance as to what's out there, with death constantly chasing our heels.

I really want to start a service to help people navigate these important life decisions.

Kokopuff, Best. Idea. Evar.
posted by BlueHorse at 6:51 PM on June 20, 2014


So, I'm a hospice nurse in a city with way too many hospices. I also provide palliative care nursing in a hospital. I could write a novel here but I'll refrain. Non-profit hospices (hospitals too for that matter) are NOT inherently better or more honest, they just shuffle their money around differently. Definitely shop around if you live in an area where you can, ask about the respite policy, ask if there's an in-patient unit or do they contract with nursing homes. Ask how many days a week you can have a CNA, RN, MSW. Does the MD do the face to face visits or is it an APN (frankly, I like the APN's much better). Ask about their protocol for pain relief, do they use fentanyl patches or only methadone (methadone is dirt cheap). What supplies are provided? What about supplemental feelings? What sort of wound care is given? The best hospice for your situation may not be the best for your neighbor's. A palliative extubation will need different skills than end stage dementia. Do they say that you MUST sign a DNR? That's policy not law. And I'm sorry but MD's are awful at end of life care in general. Sure some are great blah blah but really they mostly can't or won't be as honest as families and patients need, they under treat end of life pain and frankly just lack the ability to empathize with families who are struggling with end of life decisions. I've heard a doc flat out tell a patient with mult mets who's kidneys were failing that "dialysis is no big deal" and was aghast! Nay enraged when I disagreed and got them into hospice. Anyways, there are totally jerk hospices who scam and cut corners but there's also a lot of us who feel like we really make a difference in people's lives and take a lot of pride in helping to provide dignified peaceful deaths. Hospice is amazing, no one should die from chronic terminal illness in a hospital.
posted by yodelingisfun at 9:59 PM on June 20, 2014 [8 favorites]


I'm part way through my Health Care Assistant training and I can say for sure that my instructors are full on insurgents when it comes to how our elders are treated.
Bill 73 and the Canadian Charter of Rights and Freedoms come first, everything else gets a blank stare or a whistle blow.
Things change bit by bit.
posted by qinn at 12:49 AM on June 21, 2014


they under treat end of life pain

I noticed this attitude when my own chronic illness was undiagnosed (colitis), and i was dealing with chronic paink I only had one doctor in all those years who offered me any pain relief at all, and I was so scared of getting addicted I said no and continued stuffing my face with otc codeine.

It was the same in the last few months my father's life, last year, when his heart problems and associated fluid in lungs left him incredibly fatigued and hurting.

In both cases there was a prevalent attitude that as overall health being managed, pain was almost incidental.

It's frustrating, but I do understand: chronic pain like living in another country. You cannot describe it to someone who hasn't been there, and as soon add you leave the memory starts to fade. A dark, private country.

Hospices, I feel, understand this better, as sans treatment for health, what remains is comfort and rest. The feeling of ease you get without pain, is a bit like breathing, I think; unnoticed until it's not there, and it becomes most important thing youcan imagine.

There's also conversations about how our society approaches death. We are very insulated from it in the west.
posted by smoke at 2:37 AM on June 21, 2014 [3 favorites]


Hospice was a godsend when my mom was dying. In her case, she died of cancer, and there was no doubt that she was dying and no way to prolong her life. And she wanted comfort care and that was it. Mom was able to die in her own home, free of pain, because of hospice.

Same here. The hospice services in my area were wonderful.
posted by magstheaxe at 7:48 AM on June 23, 2014


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