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.
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.
"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."
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.
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.
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.
There is that, but I still think even in a system where everyone acts in good faith, it is by no means trivial to implement euthanasia for 'diminished states of existence'.
Agreed on incentives. There is no resolvable solution for those incentives. Especially since suicide is easy to plan and not necessarily painful. For example iirc, Robin Williams did it.
Well living is the default, so the burden of proof lies with changing that state.
Alternatively you could argue that they still get out of bed and eat and engage, and perhaps these are signs enough of some desire to live. Anyway, I think there are some philosophical complications which require exploration.
Honestly that is no defense at all for over medication. I’d rather be properly medicated and risk dying on a fence than be over medicated. If I reach that point I’ve already lived enough years and I’d prefer to maintain what abilities I can have. The worse that can happen to me then is death and death at that age isn’t so bad. — This will likely rub someone the wrong way so consider the other posters are asking for euthanasia as if self euthanasia weren’t already an option and as if we weren’t already “euthanizing” people with morphine as soon as they hit hospice.
I'm not trying to defend it. Chemical restraint is terrible, as is the lack of viable alternatives.
The worst that can happen isn't death, you can fall off the fence and break 6 vertebrae and spend the next 3 months screaming in pain on top of everything else.
People don't get euthanised in hospice. Palliative care as a profession is fairly obsessed with not shortening the lives of patients they care for. There are studies for example comparing different analgesic regimens to see if there is a difference in survival.
Palliative cate the profession may be. Palliative care as practiced by hospices is more hit than miss but they do miss. You will find comments by nurses reassuring the right to die fans that end of life care covers their concerns. Hospices have hastened death before.
Maybe America needs to reinvent generational housing. It makes no sense to put everyone's family in nursing homes. Instead reserve those for people with high needs that cannot be accommodated by traveling nurses. Give tax breaks for retirement aged parents, even if they're working. It won't work for everyone but it's a better solution than massive jail like senior centres for the destitute.
This usually happens. From everything I've seen nursing homes are almost always a last resort when family literally can't provide the care the patient needs.
> Young children or adults with severe behavioural problems are managed without antipsychotics and sedatives...
Indeed! In practice, they're often managed with dangerous restraint techniques, or mentally abusive solitary confinement practices! Consider, for instance, this wonderful coverage of Illinois:
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.
Really good advice to get a Will + DNR. This can be performed by a law firm that specializes in "elder law".
Another reason for visiting with an elder law firm is that there are serious financial implications when someone ends up in a skilled nursing facility for the rest of their life. Private pay is, not joking, more than $10K per month. If you want to use medical assistance (medicaid) you will have to "spend down" your savings until you qualify.
Elders who want to give their assets/money to their children need to do so 5 years before they enter a facility. If they transfer assets and enter a nursing facility in less than 5 years, the children who received those assets will need to cover the cost until the "spend down" is done. This look-back period used to be 2 years, but because of the "Deficit Reduction Act of 2005" signed by George "Dubya" Bush, it is now 5 years. This is the kind of trap that wipes out the finances of entire middle class families-- how's that for reducing the deficit with cruelty? To avoid this trap, the family needs to handle transfer of assets like property and savings very carefully under the advice of lawyers who specialize in this field.
Thank you so much for giving the fuller explanation. I figured anyone that would look into it would be advised of those considerations. You might even run into issues staying in a preferred facility for your entire life based on your ability to pay privately vs medicaid/medicare.
You could literally be not lucid, be repeatedly resuscitated (when you might otherwise might want to die a natural death), and have that all happening while burning through your entire life savings or financially harming your loved ones if you did not specify this beforehand.
If you don't word it right, it seems to me you could also be facing a short-term reversible condition - someone elses mistake even - and they would be legally bound to let you go. Which would be equally devastating to my family:
>"...Upon transfer to the ward, the patient was inadvertently given hydromorphone instead of morphine. Shortly thereafter she was found not breathing. Resuscitation was not performed because of a do-not-resuscitate order on her medical record." [1]
... A narcan dose would reverse the above in about 20 seconds, but instead the patient died.
... this is why I asked GP about how these things are drawn up - I have to imagine it is scenario based?
"A 90-year-old woman lived independently, despite a history of stroke, congestive heart failure, emphysema, osteoporosis and hypothyroidism. After a fall in her residence during the winter, she presented to the emergency department of her local hospital where she was given long-acting morphine orally to control pain in her chest wall. With a diagnosis of pneumonia and renal failure, the patient was transferred to a ward, where the morphine was discontinued and hydromorphone was ordered in its place. Unfortunately, the patient received both analgesics. Two days after admission to the ward, she was found unrousable. Narcotic overdose was considered. After a single bolus dose of naloxone intravenously, the patient became alert; however, left alone for a few minutes, she was then found without vital signs. No further attempt at resuscitation was attempted because a do-not-resuscitate order had been previously entered in her chart at her request."
It isn't a simple case of an otherwise healthy person not given narcan because of a DNR. They were very ill, injured, and coded after an inital nalaxone treatment. Honestly, if it were me, I might want to shake the hand of the person that gave accidental overdose. Regardless, that is great link and both cases are very ethically complicated.
You should look into it more yourself, but for example, one might want to withdraw life sustaining treatment (food/water) if they are in a persistent vegetative state for a certain period of time. Based on other circumstances they might want a hard DNR. It is important and people should educate themselves about end of live decisions and options.
edit: I just realized you were referring to case #2. That is also complicated ethically.
1) are you advocating getting a flat out DNR order in your advanced directives / living will (do not ressus, period)? or just having advanced medical directives which say when you should be a DNR case?
If the former then I think that is a more nuanced discussion than just "good advice", considering you might be facing a reversible drug overdose for instance [2].
2) Do these the law firms typically walk through all the hypothetical scenarios to say under which one you should be DNR? The reversible overdose etc. case is one which I would be interested in vs. long-term vegetative state, etc. - I would understandably want to clarify there.
1) DNR "rules" are covered (in my family's case) in a document called "Health Care Directives". It has a number of options and the options are selected by initialing. YMMV depending, I think, on state laws.
2) The firm I used had a meeting where the family members sat down and discussed everything with a lawyer. We were able to ask detailed questions and get answers. It was helpful and very worth the expense, because we used that knowledge later on to transfer property "the right way" so that it would stay in the family rather than being used entirely for medical-assistance spend-down.
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.
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.
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.
Also if you do manage to commit suicide no one pays out on life insurance or pension.
Best option I think is to start with nothing and end with nothing. The above problem is void then. That fortunate bit in the middle needs to be distributed to your children then if they need it.
Nah I’m good. Just watched a couple of people suffer unnecessarily for the sake of a life insurance contract. Figured it was worth checking out before I threw the cash into one.
>>>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.
Same - but even in places where assisted suicide is legal, it's often not available for cases of dementia. In my jurisdiction you must be terminally ill and of sound mind at the time you request medically assisted death; you can't set something up in advance, can't give power of attorney to another, can't qualify based on dementia alone, and if you happen to have, say, dementia and cancer, probably can't request it because of your dementia specifically.
It's a tough problem to be sure, and I hope it gets well sorted out before I hit old age.
I also want something like a Turing test to determine if I should be kept alive.
The best criteria I've come up with so far is: able to use toilet, able to maintain hygiene, aware of self (name, age), aware of world (rough calendar knowledge, recognize friends and family).
--
We had two family members warehoused in a long term facility who were not allowed to die. As in stopped eating, so were given feeding tubes. Extraordinary efforts to keep them alive. Their DNRs were ineffective. They became vegetables with bank accounts.
Their executor (my mother) got nutty about the whole thing. Her own dementia made her totally irrational, whereas had been very humane just a decade earlier.
And the facility and various care providers were only too happy to keep them alive. (One of the other inmates had been there 11 years. Not a single outside contact. Complete vegetable. How is that right?)
(Were the two victims still lucid, they'd be livid about pointless life extension at great suffering and expense.)
I told my kids to not ever, ever let me end up like that. I've had an amazing run. The end will suck, sure, but no sense getting fussy about it.
Let me pass with some dignity, while I can still say goodbye to everyone properly. Don't waste my money. Don't let me suffer.
You may be confusing living will with a last will and testament.
It may be helpful to think of a living will as "health care directives". So that now, while you don't have dementia, you can spell out your wishes and who has the authority to act on said wishes, when you can no longer make decisions.
Which state? Oregon has an assisted suicide law but it doesn't cover dementia. I'd love to hear about which ones do as I also formed this plan after seeing my father go through it.
A lot of folks don't appreciate the black & white nature of a DNR. At my mother's group home, the head nurse told me a story of a man who started choking on his breakfast. They were unable to clear his airway, called 911, and EMTs were able to get him breathing again. She got into trouble for violating his DNR. My neighbor shared with me his doctor's comment that their mother's DNR would preclude antibiotics to treat pneumonia.
I went over my own mother's DNR papers several times, but there was never any chance at nuance with this legal document. I held off signing her DNR until it made sense — the point where a hospital admission could not possibly result in an eventual release. Many life-threatening complications require better judgement than a single page of blindly copy-pasted instructions.
Depending on the prognosis, what you describe is a feature, not a bug. Pneumonia and aspiration of food (often these are causally linked) is one of the more likely causes of death in advanced dementia. If well-meaning staff are running interference here (hello, feeding tube!) you can wind up living considerably longer in a state where you no longer recognize anyone, are bedfast, incontinent and have no real ability to communicate.
I looked into getting a tattoo as a DNR (in case I couldn't communicate), and there's a lot of problems with the idea. Firstly, emergency room staff aren't looking for tattoos - they're trying to ensure breathing, stopping bloodloss, and so on. And if they do happen to look for a tattoo, there's no standard location or design of them, so if they see one, they may just assume it's artistic and not a legally-enforceable DNR (or even a hint to look for DNR paperwork).
There was a reddit thread talking about that, and someone pointed out that there's no way a medical professional would be willing to treat a random tattoo on someone's body as a valid indication of their current consent. What if you got the tattoo and then changed your mind, but never got the tattoo removed?
Here's an interesting medical case where an unconscious man was admitted to the ER with a tattoo reading "Do Not Resuscitate" and the hospital staff was faced with the decision of whether to honor it.
Literally just hung up the phone (within the last five minutes) on a call with my parents who wanted to tell me they were changing doctors (I am now responsible for their affairs). Their current (until tomorrow) doctor told them that as they each have a DNR in place he didn’t see why he should bother treating them.
Well I wasn't there but given that my mum is an M.D and both she and the doctor are Indian I consider it likely accurate. Especially as they went to the effort of finding a replacement.
Living wills and advanced medical detectives are good, but DNRs for healthy persons are extraordinarily rare. And for good reason: healthy people are much more likely to recover from needing resuscitation with reasonable or normal quality of life.
I mean, sure, think it through, I guess. But it's a weird thing to encourage.
I disagree. There certainly circumstances in which a normally healthy person can be left in a permanent vegetative state (see Terry Schiavo[0].)
Regardless of the rarity of such occurrences, it’s always good to have clear communication around how you want to be treated in such a terrible situation. If there’s a clear medical opinion that my quality of life could not be restored to a fully functionally independent state, I’d rather just go.
You disagree about what? That getting a DNR would be a mistake for the vast majority of healthy people?
The existence of rare bad outcomes is not a good reason to decline a big class of medical treatments. You would not recommend against vaccination because every once in a while a vaccine kills someone.
You do not need a DNR to have clear communication! That's why I specifically mentioned having advanced medical directives. A DNR is standing blanket order to not perform CPR or other live-saving resuscitation in case your heart stops or you stop breathing for any reason.
You're confusing living wills in general with a DNR order. Every sane adult should have a living will which clearly lays out what they want in case they can't communicate it at the time. A living will need not include a DNR order: in fact you can request the opposite.
An advanced directive is a legal document indicating a person's preferences and transferring legal authority. A DNR is an order to medical personnel for emergency situations. Only the DNR is effectively binding on medical personnel in such situations because they can't be expected to know of all legal documents.
Advanced directives can include DNRs, and will often do so for patients who have a bad prognosis. But healthy people do not normally include DNRs in their advanced directive!
Oh, I see. I assumed that an advanced directive is a more comprehensive DNR, since even if you’re healthy, you can still suddenly become unable to communicate, at which point you can’t make a DNR, so it doesn’t make any sense to wait until you’re unhealthy to make a DNR.
You can have instructions in your advanced directive about the conditions under which you want DNRs created on your behalf. (Even in the absence of advanced directives, a family members of a patient who cannot make decisions for themselves is often awarded medical power of attorney, in which case that family member can order a DNR for the patient. Needless to say, this is not ideal because the family member is often unsure exactly what the patient would want if they were of sound mind, and tend to err on the side of providing intensive care even with a bleak prognosis.)
I was actually speaking to an older cohort there. I can see how it was wording badly.
I think young people should consider a living will with advanced medical directives for things like pvs, and older/terminally ill people should consider the impact of DNRs, but not lightly.
It's still some great advice - and if you're speaking with a counsel specialized in elder care they'll probably walk you through options around dementia as well.
You can specify that you want every extraordinary measure that is medically possible in your advanced directives. If you don't specify it, your wishes may not be followed either way.
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.
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.
> 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.
There are a wide range of conditions (neurological disorders, movement disorders, CSF disorders, sleep disorders, anemia, etc) that aren't dementia, but can look like it at times and will lead to someone being unable to care for themselves. That inability to care for oneself will persist until the conditions are successfully treated.
The problem with a dementia diagnosis in that context is that someone, probably the patient's family, has to go out of their way to show that the patient actually has something else and find a doctor willing to look into it before any other doctors will even consider the idea that they don't have dementia.
And while the patient has a dementia Dx, they will likely be chemically and physically restrained in a custodial care setting, which tends to further impair their functionality and ability to care for themselves, and that reduction in functionality is often taken as further proof that they are demented.
I have had between 10 and 20 physicians and 3 neurologists tell my family over the past two decades that what my grandmother had was Alzheimer's, Lewy body, and Vascular dementia, and that she would only decline. As it turns out, they were all wrong. They weren't just a little wrong, they were all completely wrong. To myself and my family, it was obvious that they were wrong because she would come back home from the Hospital, SNF, Board & Care, or Day Program and function much better than she did in those custodial settings, but they would only see her as mostly non-functional because the way they treated her significantly worsened her conditions. We had to really dig to figure out what was going on, but most people probably don't have the time and energy to do what we did.
There are also many people who do have different forms of dementia, but even in that population I imagine there are many treatable disorders missed that complicate their dementia.
Ultimately, the elderly are the most medically complex population with the least amount of time left to live, and because of that they tend to be given the least amount of care, and what care they are given tends to be of lesser quality. It's understandable from the point of view of triage, but as a society we should acknowledge that.
> 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).
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.
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.
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.
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.
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.
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.
> 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.
One might posit that the bias is in the drug being recommended in the first place (by a company that stands to gain from that recommendation and can afford lobbyists.)
> 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
Or, y'know, caused by people eating cheese. Or drinking. MAOIs aren't not-a-first-line-therapy because they're easy to mis-prescribe; they're not-a-first-line-therapy because they're incompatible with many people's lifestyles.
Treatment regimens are designed such that you prescribe first the thing that's least likely to interfere with the patient's life, however small a chance it has of helping them. Because, if it does help, then it helped with (likely) no negative consequences.
In other words, most first-line treatments are placebos, and that's the whole point. First-line treatments should be placebos. People who can be cured by placebos shouldn't get drugs stronger than placebo; since drugs stronger than placebo necessarily have more side-effects than placebo.
People who aren't cured, come back and get the second-line treatment. And on and on until they get one that works for them.
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.
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.
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.
From my experience with loved ones' struggles with medicating mental illness, much of the difficulty is in finding a treatment regimen that's both effective enough to function normally and minimizes side effects. If SSRI's work well enough for some chunk of the depressed population and have fewer side effects than the alternatives, why would "lets try that first" be a pessimistic outcome?
Because "fewer side effects" is such a massive overgeneralization that it's meaningless. Side effects are different for each drug and there's no reason to assume the patient would prefer the side effects of an ineffective SSRI to an effective MAOI right out of the gate.
Additionally, each doctor wants you to try the less-effective drug for months at a time, each revision in the medication requires an expensive and time-consuming follow-up appointment at which point the doctor won't remember anything about you anyway, and SSRIs have their own non-trivial side effect profiles and withdrawal symptoms. It's just not as simple as -- or at least shouldn't be as simple as -- "oh, this one has fewer side effects!"
It's especially bad in the case of SSRIs, because to switch from an SSRI to an MAOI or vice-versa, you have to "wash out" (that is, go unmedicated) for at least two weeks, during which time the person is unlikely to be functional regardless of their natural chemistry because they'll be withdrawing from the old medication.
That's not how the process works. MAOIs may work better than SSRIs for some depressed patients, but certainly not everyone. Depression isn't a single disease; it has multiple causes and treatments. MAOIs have several serious side effects beyond just withdrawal syndrome so they shouldn't be prescribed lightly. But they absolutely are still prescribed when appropriate if safer treatments aren't effective.
Not to be overly antagonistic here, but "the process" doesn't work at all. Doctors make drive-by appointments, write an Rx after a few minutes, and they don't want to hear any guff about it. Many of them refuse to take action that would benefit their patients because they're worried about drawing attention from law enforcement or getting labeled as a pill mill. High-deductible health plans are becoming pervasive so each check-up is a hundred bucks. Patients are treated alternately like cattle or criminals, must adhere to the doctor's schedule ("sorry, I only work half-days 3 days of the week, and make sure you schedule 4 months in advance!"), and the doctor has forgotten everything about the patient by the next follow-up. These are the people to whom you're entrusting your brain chemistry.
Meanwhile, the industry replaces pseudophedrine with phenylephrine (placebo whose only reliable effect is increased blood pressure) so that they don't have to admit every effective decongestant is now restricted and pushes the predominantly-ineffective atomoxetine as a replacement for amphetamines.
There are definite benefits to competent medical supervision, if it ever actually happened, but it's so uncommon that we're better off dropping the pretense and just using drugs that work.
You seem to be confused and are all over the map with that comment. Sure some patients aren't able to get enough time with qualified doctors. However that has nothing to do with whether a particular depressed patient is best treated with an SSRI, MAOI, or something else. You cannot seriously claim that MAOIs are completely safe: like every powerful drug, doctors have to weigh benefits against potential side effects.
Pseudoephedrine is still available without a prescription if you want it. I bought some at my local pharmacy last month. The government forced the industry to restrict sales quantities and require customers to show ID because drug dealers were buying it to cook methamphetamine.
> every simple, effective drug gets blacklisted pretty quickly, because... [they don't make people] dependent on our horrifically broken medical system
This is a claim that demands substantial support - particularly when simple effective drugs are used routinely! - and you've offered none.
This is a discussion board, not a scientific journal. Every post doesn't have to be a thesis. If you'd like to discuss something specific rather than just pointing out that my comment doesn't come with a bibliography, feel free.
No, but you're basically alleging a conspiracy. It's up to you to back up your claim, but I'm asking for some support rather than outright dismissing your view.
> Never attribute to malice that which can be adequately explained by stupidity.
It's just how the system works. People behave as if they're part of a conspiracy, but they're all just doing what seems best (here, most profitable) for them.
Because people can't afford dignity and care, for the most part?
It sounds good, but if you've ever cared for a severely demented person who can no longer safely walk, you will have to make the choice between (a) strapping someone to a bed or (b) paying for 24/7 care (or, to some pro-rated amount, giving up your own time) to ensure that they don't get up, fall, and break something.
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.
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.
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)
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.
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.
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?"
> 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.
Atypical antipsychotics have a huge positive impact for lots of people. And not on a difficult vs calm spectrum, on a "completely disorganized and unable to function" vs "doing things they enjoy" spectrum.
I don't think it's fair to assume that just because the drugs make patients easier to deal with, that that is why they are prescribed. Even less so the idea that the medical staff is routinely violating their medical duties.
No doubt this does happen, and these cases should be investigated. But as with opiates, locking onto one part of the situation without considering the whole picture can lead to monstrous results.
You might underestimate the agitation and distress that comes with dementia and the pain of infirmity. Nursing homes are a tough, sad place a lot of them time. It probably is easier for caregivers, but don't assume malice.
ps - Sorry for misreading. I completely agree with you about nursing home workers in general, and I'm sorry about your father.
I don’t assume malice. My father has dementia. He is not even aggressive but it takes incredible effort and patience to deal with him. Nursing home workers are probably the most under appreciated profession. They are understaffed, underpaid and do incredibly difficult and draining work. To me they are heroes.
My wife has been helping care for a dementia patient who is a really nice guy and easy to live with. He just doesn't remember how to get to the cafeteria or do many activities of daily living.
Other dementia patients are nasty and might try to strangle a caregiver that they don't recognize.
Heroes as in someone a little child aspires to? They are not part of that police, firefighter, teacher, scientist, sports figure group. Astronaut is probably the biggest.
Nursing home workers do a job that is important, few want to do or could do. Most do it for pay. Most do not aspire to the job but end up there for practical reasons
Their job is harder than any of the other jobs you mentioned. Some people maybe do it for the money and others probably out of compassion. But in the end it doesn’t matter. It’s a very tough and thankless job.
That is, in part, because many if not most nursing homes are understaffed. In Indiana, they always knew when they were getting inspected and forced overtime on folks those couple of weeks. Why the past month's payroll records aren't checked more often for staffing levels I never know.
Nursing care is expensive. Very expensive. No one wants to pay for it, either because people didn't or couldn't save enough for it prior to needing it, or government can't get the will together to properly fund it (Medicaid/Medicare aside) with taxes. People still end up in homes, caregivers continue to be chronically underpaid, and there's some occasional public concern or outrage over it so society can feel better about the situation. "Thoughts and prayers" over meaningful elder care reform.
“Nursing care is expensive. Very expensive. No one wants to pay for it, ”
My estimate would be that you probably need around 1 person for 5 people or less to do the job some justice. Plus doctors and other personnel. This would be freakishly expensive.
"This report, authorized by the Chairman of the Virginia Senate Committee on Education and Health, studies the provisions of Senate Bill 1125 of the 2001 Session of the General Assembly. Senate Bill 1125 requires Virginia nursing homes to implement minimum nursing staff standards of 5.2 hours per resident day (hprd). For Certified Nursing Assistants (CNAs), the Bill requires minimum ratios of 1:5 residents (day), 1:5 (evening), and 1:10 (night) or a total of 4.0 hprd, and minimum licensed nurse-to-resident ratios of 1:15 (day), 1:20 (evening), and 1:30 (night) or a total of 1.2 hprd. These minimum standards exceed those of all other states as well as those recommended by advocacy and research organizations. The fiscal impact on the Medicaid program is estimated to be an additional $91.2 million from the general fund annually."
Yes, very expensive. However, less than 5% of people end up in a nursing home for a significant length of time (>1 year).
It would be nice if we could all live to a ripe age, enjoy many years of retirement maintaining mobility and a lucid mind and then suddenly die in sleep. Unfortunately, it doesn't always turn out that way. Hopefully by the time many of us get to be that age, euthanasia will be a mainstream option.
I recently visited a nursing home and everyone had a TV in their room.
Instead of being calming, they were tuned to broadcast channels where the news channels announced the-world-is-going-to-pieces between loud advertisements.
My grandfather likes National Geographic, and was always into science programming. National Geographic and MSNBC are his channels. The last time he was in rehab, their cable subscription didn't have MSNBC, but it did have National Geographic, so I got to see a lot of it sitting with him...lo and behold, National Geographic, the channel associated with those amazing magazines I'd stack and read as a kid, now runs these weird one-sided fascist, xenophobic prison documentaries all. day. long. It's sick stuff.
I'm a millennial and I like to play video games on my spare time; usually puzzle, adventure, or platform ones. One thing I hope to imagine is that if/when I'm in an elderly care setting is if I'll be able to enjoy them in some ways like when I was a child.
I'm curious if video games being a more common (plus potentially social) activity will be more common in retirement home-like settings.
I may be cynical, but I don't see hospitals and nursing homes providing systems or connectivity for something like that in the future. If they do, it will be a service priced like airline wifi.
Maybe by that time we'll have personal VR setups with internet connections that route around health-care-system influence.
Agreed. It's extremely difficult to gauge "too much" or not enough, especially when the patient is less than reliable.
I watched my mother in law go through it for many years and I would find it hard to say anyone gave someone "too much" when in reality they had no way of knowing what too much or not enough was without simple trial and error.
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.
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...
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.
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.
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.)
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.
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.
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.
Fair enough, but I live in a very wealthy area and most of the examples I'm thinking of are stay-at-home moms whose kids are now old enough to be in school most of the day. But they're still at anti-depressants like they're poisoned and it's the antidote. Not saying everyone should be seeing a therapist, these aren't the only 2 possible solutions to whatever they're suffering, but it looks to me like overmedication is for sure happening in a lot of cases.
Once you pop, you can't stop. Washing out anti-depressants and allowing your body to return to a natural homeostasis is frequently a massive ordeal entailing physical fatigue, wild mood swings, serious hopelessness and despair, among other things. Adults can be quite dangerous to themselves and others during that process and it's important to have a patient and disciplined caretaker around to babysit for the duration of the weeks-long washout.
Most people are not apprised of this when they start a medication -- they're just naively following doctor's orders. Consider that psychiatry is a racket where the conventional understanding is that any psych willing to mess with insurance companies is a hack, that every cash-only doc within 50 miles of a significant population has a 3-month waiting list and is generally choosy about their patient base anyway, and that family practitioners aren't willing to do anything slightly unconventional because the DEA will start breathing down their necks, and we have quite the mess on our hands.
I'd suggest that you don't judge those SAHMs too harshly. It's a tough gig on its own, and throwing in "risk becoming totally non-functional" is usually not something that people can just pencil into their schedule.
I would say yes. I am in my 50s and it seems pretty unusual for people of my age not to have a long list of prescriptions they take. But other countries seem to be catching up.
Considering the amount of people that end up with medical issues because they can't afford basic medication, I'd say no.
We're overmedicated in opiates because of the corrupt drug industry and corporations pushing pills for profit (see: the various articles and stories detailing the rampant corruption behind Purdue) and likely undermedicated in everything else.
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.