
Nursing Homes in the US Overmedicate People with Dementia (2018) - apsec112
https://www.hrw.org/report/2018/02/05/they-want-docile/how-nursing-homes-united-states-overmedicate-people-dementia
======
Gatsky
It is a matter of resources. Young children or adults with severe behavioural
problems are managed without antipsychotics and sedatives, but it takes a
dedicated and skilled care team and a highly functional family. Even then, the
drugs still often get used.

Behavioural problems in dementia are very hard. Male patients in particular
can be quite strong and mobile. They can easily hurt staff or other residents.
They are also a risk to themselves. The coroner in my state published two
cases of patients with dementia that highlight this: one swallowed the napkin
on his dinner tray and choked, another got put of the facility and died trying
to climb a fence.

The reality is that there are few viable alternatives.

~~~
ZhuanXia
I hope when I get that degraded I will live in a society kind enough to
euthanize me, rather than slowly torture, drug and humiliate me, while
extending my demented, horror-show 'life' to the maximal possible extent in
order milk my children, savings, and/or the state. Soylent green is a utopia
compared to what we have now.

Dr. Scott Alexander writes well here on how we treat the demented:
[http://slatestarcodex.com/2013/07/17/who-by-very-slow-
decay/](http://slatestarcodex.com/2013/07/17/who-by-very-slow-decay/)

"And now every time I hear that phrase I want to scream. 21st century American
hospitals do not need to “cultivate a culture of life”. We have enough life.
We have life up the wazoo. We have more life than we know what to do with. We
have life far beyond the point where it becomes a sick caricature of itself.
We prolong life until it becomes a sickness, an abomination, a miserable and
pathetic flight from death that saps out and mocks everything that made life
desirable in the first place. 21st century American hospitals need to
cultivate a culture of life the same way that Newcastle needs to cultivate a
culture of coal, the same way a man who is burning to death needs to cultivate
a culture of fire."

~~~
Gatsky
I have to say it is unlikely there will be sanctioned euthanasia for age
related decline or dementia. The practicalities of implementing such a system
are probably prohibitive, the primary problem being ending the life of someone
without the capacity to tell you that is what they want. This is in some ways
insurmountable, because although your 50 year old fit and happy self would
definitely want to be euthanised if they had severe dementia, how do we 'know'
that this same person who now has severe dementia also wants to die?

It is similarly unlikely there will be a test which can predict imminent
dementia well enough that you would be happy to euthanise yourself while you
still have decision making capacity.

As others have said, what you can do is have some legal document which
explains your wishes if you lose capacity to make decisions, where you specify
the avoidance of life prolonging therapies, intensive care, resuscitation etc.
The other thing which is important is having someone that will take over
medical decision making whom you trust will act according to your wishes, in
the event you lose decision making capacity. Another aspect of this is making
sure friends and family are aware of your wishes. This is a kindness to them
as much as anything, so that when the time comes to withhold or withdraw
medical treatment, they don't have to ruminate on whether it is the right
thing to do.

~~~
im3w1l
There are a lot of people with their intellectual capacities intact that
express a wish to die. They don't get to die either.

For the most part society doesn't care about your wishes.

I think what it really comes down to incentives. As a society we don't want
bullying people into a suicide to be a viable strategy for getting the
inheritance money early. Or for getting rid of people in general.

~~~
TheOtherHobbes
The inheritance money argument would be a good one if it weren't for the fact
that care homes and hospitals get the inheritance money instead.

There's still some sentience in middle stage dementia, but by the late stage
there's literally no one home any more. It's really not obvious what - never
mind who - is being kept alive.

It's certainly not a simple problem. But there are existing systems for legal
oversight of care, and of power of attorney over family wealth. It doesn't
seem an impossible stretch to extend those to allow early termination in cases
of extreme suffering or total and irreversible loss of cognitive function.

We have a neighbour in the very late stages of terminal cancer. He's
completely lucid. He wants to go, his family want him to go - this has dragged
on for over a year now - and it's hard to see a good moral reason for
extending everyone's suffering even further.

------
throwaway5752
Make a living will and think through a DNR, so that you are not kept alive
against your wishes for a care facility's income stream (or even in the case
of well meaning caregivers) against your quality of life interests.

I'm serious, by they way. Almost everyone on this forum (over the age of 18 in
the US) should consider getting a relatively inexpensive living will drawn up
with advanced medical directives.

~~~
zrail
Living will is fine and good and everyone should have one. The problem is that
dementia, by itself, is not a direct cause of death. You can live for _years_
with severe dementia but be otherwise completely healthy. Two members of my
family lived out their last years like that.

My wife and I are moving to a state that allows assisted suicide after our
kids are out of the house. Neither of us want to live like that or be
remembered like that.

~~~
yulaow
Here in europe, for what I know, there is a serious problem for getting
assisted suicide (in the states that legalized it) for something like dementia
because when you have still few effects related to it they can't accept to
eutanize you because you are not in a quality of life threating condition, and
once the sympthomes are more brutal you cannot get eutanized either because
you are no more legally considered capable of making conscious decisions and
you must be capable of it _at the moment_ of the procedure, it's not valid to
give the authorization before.

~~~
eikenberry
> you are not in a quality of life threating condition

This seems very wrong. IMO few things are worse for quality of life than
slowly losing your mind.

~~~
Someone
In context: _“when you have still few effects related to it they can 't accept
to eutanize you because you are not in a quality of life threating condition”_

All people over 75 (and, probably, way earlier) are slowly losing their mind.
Early stage dementia isn’t that different from ‘just’ aging in that.

The ethical dilemma with living wills is that they always state a past
opinion. It also is well-known from various studies that opinions on when you
deem your life worth it shift tremendously over time.

With dementia, locked-in syndrome, etc, that’s a catch-22, as there’s no way
to ask you about your opinion, or even to know whether there is someone to
have an opinion anymore.

So, that you say “If I get wheelchair-bound/bedridden/don’t know my name
anymore, I don’t want to live anymore” now doesn’t imply at all that you will
think the same if it were to happen to you.

⇒ If you have a living will, be sure to regularly acknowledge or update it.

------
omgitstom
My dad passed away with dementia in 2019, spent a lot of time in nursing homes
and also making decisions about the care of my father. I actually got to see
this first hand with his caregivers in his facility. The requests to put him
on different drugs required me to do a lot of research, validation and getting
out of pocket advice from a medical professional that wasn't associated with
the care facilities.

As someone that has gone through this, there is a fine line to walk between
doctors operating under their Hippocratic oath, caregivers, and patient
wishes. My dad was prescribed meds that weren't helping his quality of life
and had really bad side effects mentally and physically through the the mid-
stages of dementia.

------
omgwtfbyobbq
This is unfortunately my experience in any custodial care setting. Providers
(Hospitals, SNFs, Board & Cares, Day Programs, etc...) will use whatever they
can get away with prescribing that has a sedative effect, not just
antipsychotic drugs.

I imagine a significant number of people diagnosed with dementia likely do not
have it. The providers just want people to be docile and lie in bed. Having to
monitor and manage people who may get up at odd hours and act in ways we
aren't used to requires a lot of other people, which gets expensive.

The worst part is that the combination of over medication and lack of suitable
care can lead to someone exhibiting symptoms similar to dementia even if they
don't have it.

To be fair, funding likely isn't sufficient for many providers to do a
sufficient job monitoring and working with their patients, but that's a
separate conversation.

~~~
munificent
_> I imagine a significant number of people diagnosed with dementia likely do
not have it. _

I don't think it's as dire as you imagine. People don't just randomly drive
themselves to nursing homes for no reason. Like you and I, few who are capable
and willing to live independently would want to be in one.

By the time you end up in a nursing home, the odds are good that you require
significant care and are unable to function independently. If that's true and
you're in a nursing home and not a hospital or hospice, it's probably because
the thing incapacitating you is mental — dementia.

However, if you _do_ have dementia and end up in a nursing home... it sucks.
Our culture and medical systems just aren't equipped to compassionately take
care of fragile, dying people, who are confused, have trouble eating, shit
themselves, etc. Caring for someone with dementia is brutal, heartbreaking
work. Most people wouldn't want that job, and there's not enough money to pay
well and compensate, so you get short-staffed or unhappy caregivers.

~~~
robryk
> If that's true and you're in a nursing home and not a hospital or hospice,
> it's probably because the thing incapacitating you is mental — dementia.

You can have musculoskeletal issues that prevent you from performing everyday
activities. You might also have neurological issues that don't affect thinking
or speech (e.g. as a result of stroke). I'm unsure if vision problems acquired
at old age can confine one to a nursing home: it's harder to learn to
compensate (e.g. because you have worse medium-term memory and poorer senses
other than sight).

~~~
bsder
Medical facilities for the "physically incapable" and medical facilities for
"memory care" are _VASTLY_ different.

You don't get admitted to a "memory care" facility easily (multiple doctors
and psychiatrists have to sign off) and it's _expensive_ once you do (health
care only really pays during immediate medical events).

I do know that there are horrors in nursing homes. I also know from personal
experience that there are also good ones. But, it, as always, comes down to
money.

~~~
omgwtfbyobbq
In my experience it's relatively easy to get admitted to a "memory care"
facility even if someone shouldn't be there. All it takes is a dementia
diagnosis and a bunch of doctors who don't care enough to look harder.

~~~
bsder
I have no clue where you're located, but that simply is totally alien to my
experience.

My mother had to have 3 independent assessments before they would authorize
permanent admission. And her Alzheimer's was _beyond obvious_ once you knew
what to look for.

A friend of mine wound up in a hospital mental health care facility in
California, and within 48 hours had a state appointed patient advocate who
immediately started forcing the doctors to justify their assessments. The
doctors played some games, but at the end of 10 days, he was released as he
should have been since whatever the "episode" was had clearly passed.

~~~
omgwtfbyobbq
We're in California as well. The state is pretty good with involuntary holds
where someone is being deprived of their rights, but anything that's voluntary
doesn't fall under that, even if the patient and/or their family made that
decision based on tall tales a physician or physicians spun.

------
mirimir
It's the same deal for troublesome kids.

For the old folks, why not morphine or heroin? That, I've heard, is at least
pleasant. As long as the supply is assured, anyway. Anti-psychotics aren't so
much fun.

And if that seems outrageous, please say why.

~~~
cookiecaper
We're in a huge pickle in general because every simple, effective drug gets
blacklisted pretty quickly, because people realize there's a simple, effective
option for treatment that doesn't make them dependent on our horrifically
broken medical system and start buying it without funneling through the
racket. This upsets the racketeers and they work to clamp down on it.

In the rare case where a simple, effective drug gets into medical practice, it
magically ends up becoming "not recommended" about 20 years after it hits the
market when the pharmaceutical company's patent runs out.

MAOIs work much better for depression than SSRIs, for example, yet the clock
runs down, a few widely-publicized cases of serotonin syndrome caused by
careless ER doctors hit the press, and suddenly anyone prescribing those drugs
comes under scrutiny, and we all need to switch to the newly-patented option.

~~~
mirimir
While that does happen, I don't think that it's as much of a conspiracy as you
claim. But I do agree that it's "broken", in that it's more about economics
than healthcare.

One issue is that new drugs aren't approved based on testing against old
drugs, or other treatments. They're just tested against no treatment. It's
generally not until much later that comparison studies get done.

The other issue, as you say, is patent protection. Patent protected drugs are
heavily promoted. And a huge chunk of that is detailing to physicians.

Generic drugs generally aren't promoted. That's because physicians aren't
actually prescribing them. They're prescribing the brand, which pharmacies
fill as generic equivalents, unless the prescription says "fill as directed".

So when some new patent protected drug comes out, it tends to displace older
drugs. Because the older brand drugs are no longer being promoted.

~~~
munk-a
I really think you and the poster above are disagreeing a lot less than you
think. The older post is being vague on the conspiracy and using an
unnecessary amount of hyperbole - but what you've stated is the actual source
of the conflict of interest... Drugs aren't being sunsetted because they're
ineffective but because they're unprofitable.

There are some pretty crazy effects from all the ridiculous players involved
in this market with manufacturers plying clients with financial assistance,
PBMs extorting manufacturers for rebates and providers over-billing
everyone... the beautiful thing is this sunset effect is clear to see even
through all that haze.

~~~
mirimir
I guess. But my point is that it's all about money.

~~~
mirimir
Belated edit. Medical care being about money is one issue, given the
Hippocratic Oath. But it's possible to have medical care systems where
economics drives good care.

The US doesn't have that.

As I said, there's a very similar situation in the US about child care and
education. And really, it's about everyone who isn't effectively competing for
resources.

------
Causality1
Do you know what it's like to have to explain to your mother every day that
her parents are dead? That her first and second husbands are both dead? Spend
a month watching her soul break anew every single day, sometimes twice a day,
and then tell me drugging her until she doesn't think about it is worse than
that because I fucking guarantee you there is nothing worse than that.

------
catalogia
After witnessing family members with dementia, I've decided that unless a true
cure is developed, the only 'treatment' I ever want should I get dementia is
to be swiftly euthanized. I just hope that by the time that may happen, I
don't have to travel far to find a way to get that done legally.

~~~
patall
Most people think similar when that is still far away. However the closer you
get, the more likely you are going to think: 'Nah, its not that bad yet, lets
wait another 5 years, lets wait another 2 years, lets wait another 6 months'
and so on. The will to live seems to be much stronger for short term
decisions. (It is similar probably for other things like sports, living on
your own etc. When I am older I do not think I will want an SUV for
convenience but who knows how I will think then)

------
deaps
Gosh -- just the premise of the title alone -- really makes me think about
what happened to my Grandma back in late 2016-2017.

I won't go into details, but suffice to say, either we got her into the
nursing home at the _exact_ right time where she absolutely needed it, or they
started over-medicating her right away. Once she stepped foot through those
doors, she was never the same again.

Her admittance coincided with the hospitalization and subsequent death of my
Grandpa, who was her primary caregiver at the age of 92 (WWII veteran and
atomic engineer, btw - smartest guy I ever knew).

Long story short, we started off getting them a two-person room where they
were supposed to reunite once my Grandpa was checked out (a room which my
Grandpa never made it to). Within a month, we had to move her into a one-
person room. She never put two and two together (they were married for 70
years). I was the only person she recognized.

But she was never the same again once she checked in. And it was immediate.

------
downerending
I think think the issue is a lot more complex than they're describing. Serious
dementia can be quite unpleasant, and as with physical pain, it's not clear
that going light on drugs is the ethical thing to do.

Similarly, withholding meds from people in their 80s because those meds might
shorten their life some seems dubious.

~~~
logjammin
This makes a sort of sense, but only if you know little about the drugs in
question - antipsychotic drugs, formerly known as neuroleptics - which do not
target nor act on any demonstrated pathology, lesion, or abnormality. What the
drugs _do_ do, as much in dementia as in psychosis, is "make it so [you] can't
think", as Walter L. tells us. To the extent that anyone, with any diagnosis,
is helped because of these compounds, it's because of their extreme
tranquilizing effects on both the mind and visible behavior.

You're right that the ethics of the whole thing aren't clear. But a fair
discussion of the ethics of cautiously using these drugs for dementia in
willing participants - much less rampant, off-label uses in contexts for which
there's no empirical evidence of their effectiveness (no FDA indication for
any of these drugs for any dementia) - would include an honest conversation
about the historical uses of prescribed psychotropics, and of political and
economic power in the mental health professions and medicine more generally.
Such a historical look would show that stories like this one are far from an
abnormality, and that coercion, to greater or lesser degrees, is the norm.
Some proportion of people taking these drugs (for any reason) undoubtedly do
so of their own volition, and some of these may even derive a benefit from
them. I have no objection to this. But vast numbers of people have no such
luck, and are forced to take these drugs for some reason or another.

Many of these people are _difficult_ : they're old and agitated and their
dementia's getting worse, or perhaps they're yelling to themselves in the
street, half-naked, rambling incoherently and looking fairly menacing, etc.
What do the rest of us want with difficult people? We want'em out of our way
(in a nursing home, say) and we want'em nice and calm. The drugs in this
article do exactly that. No one with enough time in the mental health
professions, or in geriatrics, is under any illusions about this.

"They want docile" is exactly right. So any discussion about the ethics
involved here should also ask: "what are the ethics of coercing people to calm
down with drugs?"

~~~
shepardrtc
> So any discussion about the ethics involved here should also ask: "what are
> the ethics of coercing people to calm down with drugs?"

My mother currently has dementia and my father had it before he died.

The confusion and unhappiness these people suffer from due to their illness
should not be ignored. If they're in a nursing home, its even worse. In many
cases it's quite humane to numb them up. Especially if they don't have loved
ones to help them. There is no cure, there is no getting better. There is only
getting worse and certain death. And they instinctively know something is
wrong.

My mother is currently on two anti-depressant/anti-anxiety meds to help, and
its made things much much better for her. No more worrying and confusion over
everything, no more phone calls crying. She just goes about doing normal
things without being upset.

------
Fede_V
A nice compliment to that article, via Dylan Matthews of Vox News:
[https://drive.google.com/file/d/1d6vYu_uN9keb9iiT2R5UJihA_61...](https://drive.google.com/file/d/1d6vYu_uN9keb9iiT2R5UJihA_61K0Fce/view)

Short version: paying CNA more increases lifespan and quality of life for
people in retirement homes because they are more motivated and you can hire
better staff.

------
elchief
Same in Canada. My dad has dementia and is in a home in Vancouver. They had
him pretty zombified until I intervened. He's a bit of a pain in the ass, so
it's easier for the staff to drug him up...

~~~
stevespang
Dementia aside, nursing homes drug up EVERYONE who is a pain in the ass, SOP.
American children of families with enough money would typically rather someone
else deal with their aging parents rather than they have to.

------
coldtea
Makes sense. The staff are not so enthused workers.

They don't care for these people, they don't have any special ties with them
(e.g. like family), and if they could dispose them and keep the money they
would. Keeping them sleepy and docile removes them from most of their day, and
makes their jobs easier.

------
teekert
Let me guess, the nursing home is sponsored by a Pharma company? This is how
US's opioid addiction came into being. Screw the socialists, right? Profit
above everything.

I get sick when I see the jokes they make on Big Bang Theory about Penny's
job, she's basically a criminal (in many countries literally.)

------
notadoc
Compared to other nations, is the US overmedicated in general?

~~~
TallGuyShort
Don't know how it compares to other countries, but the US is definitely
overmedicated in general. Not really my place, since at least with
prescriptions they are being distributed by people who are by definition more
qualified than me, but it's widely known that doctors will often prescribe
antibiotics "just in case", even though tests for specific bacteria have all
come back negative, and the use in livestock adds to that. The opioid epidemic
is another clear sign that it's being prescribed more than is warranted.

Far more subjective and anecdotal, but the number of people I know who take
prescriptions for anxiety or other ongoing mental health concerns but who have
never tried therapy is scary. Treating with drugs is clearly solution #1 for a
lot of our culture.

~~~
Broken_Hippo
Therapy is a complicated beast. Not everyone can afford it (generic prozac is
fairly inexpensive per month, a therapist is usually more than $20 per month).
Even if the insurance is good, not everyone can get off work to go - which is
a real issue if you work "doctor hours". And to make it all worse, so many
therapists have a waiting list and patients are queued depending on need.

And some folks need the drugs just to talk to someone!

So yeah, drugs is often the go-to. A family doctor is a lot more available
than a therapist.

~~~
nxc18
Yeah, I've tried to get a therapist here in SoCal and it is an absolute
nightmare. Its one of those things where clearly I don't _need_ it, but I'd
probably be a lot healthier and happier with it. But even thought I have good
insurance and could definitely afford it, there just isn't availability at
all. I've called around and no one is taking new patients.

Saying 'therapy not drugs' is all fine and dandy until you consider that for
probably 99% of people therapy just isn't an option and may never be.

~~~
p1mrx
> But even thought I have good insurance ... there just isn't availability at
> all.

Were you only asking therapists who would accept your insurance, or did the
lack of availability also apply to "out of network" providers?

