MovieChat Forums > Pure Genius (2016) Discussion > The right of the patient

The right of the patient


A recent episode involved a patient that was going to die without treatment, but the FDA would not approve the radical treatment they were considering. I can see the point of the FDA, they don't want to let doctors use humans as guinea pigs for every crazy experiment, but at what point do you allow a patient to make that decision on their own?

You have the right to participate in a clinical trial and get paid. You sign a waiver that you accept the risk of side effects. So, if you are dying of a disease, and all conventional means of treatment have failed, should you not have the right to sign a waiver (to prevent your family from suing after your death), stating that you accept the risks, and are willing to try something unconventional that might just extend your life?

What is the ethical argument against letting a patient try something radical when it is the only option left?

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I absolutely agree. If it works we live, if it doesn't then that is at least one step closer to saving someone else's life. I think maybe they are afraid that doctors may not be doing it for the right reasons therefore stopping the process.

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Ethics is tricky thing. I told my dentist I wanted my wisdom teeth removed because they were difficult to brush and just sat there waiting to be attacked by caries trolls. They refused, even if I would have payed for it, because they were healthy teeth. Ethics.

My body my choice is a slogan that's been worn out lately, but apparently that doesn't apply to everyone.

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My body my choice is a slogan that's been worn out lately, but apparently that doesn't apply to everyone.

And IMO it won't until we start putting Libertarians into office.

Ignoring politics doesn't mean politics will ignore you.
-Pericles paraphrased in <100 characters

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Fortunately libertarian ideas can be enacted even before many Libertarians are elected. Libertarians have been at the forefront of arguing against the War on Drugs for decades, and yet pot legalization has been spreading around the country despite Libertarians not being in office. That change has been driven by ballot initiatives which of course unfortunately aren't relevant in the case of the FDA so reforming them may be more difficult.

Unfortunately bureaucrats tend to be blamed when they approve something that does harm, but they tend not to suffer negative consequences for not approving something, so they are motivated to err on the side of caution. Overall the system is motivated to protect the existing status quo approaches at the expense of new ones. While most people are decent and wish to do the right thing, subconsciously such factors do have an impact in evolving a culture that is risk averse, and so full of bureaucratic rules that someone hoping to bypass it won't have an easy time.

Nobel laureate economists George Stigler won his prize for work on what is called regulatory capture theory. He wrote decades ago that "as a rule, regulation is acquired by the industry and is designed and operated primarily for its benefit". Companies make lots of money off existing treatments and they stand to lose money from any new competitor bringing a treatment to market so that is also a factor leading the FDA to err on the side of preventing the use of new treatments. Obviously those same companies can make money from a treatment for something new, but their competitors would prefer to not see that happen.

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Actually I guess I should add that I referred to "reforming" the FDA, when the libertarian approach would be to realize that there monopolies tend to do a poor job since there isn't competition to force them to do better.

There should be multiple competing private entities that certify products as being "safe". The best could inspire trust with some sort of insurance type guarantee regarding the statistical likelihood of problems that leads to a payout to all who used the product if it doesn't meet that standard. Insurers and doctors can decide which labels they trust the most. There is no need for the government to provide 1 de facto monopoly provider of safety certification, and while it exists there is no incentive for private entities to compete. The FDA should be spun off to be merely a private certification label.

People should of course be free to choose to use a treatment technique that isn't yet certified by any entity, though they'd need either an insurance policy that would go along with that and cover it, or to fund treatment some other way (like in this fictional world where a billionaire is picking up the tab).


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And that's just it. If it is something not approved by the FDA, insurance companies will not pay for it. Therefore if you're not wealthy you will not get the treatment.

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They could merge it with Fantasy Island and call it Fantasy Medicine. Since offshore, no FDA issues. All we need is a height challenged individual saying, "Boss, de surgical plane, de surgical plane."

My Chimp DNA seems to have lost its password temporarily. Sluggr-2

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[deleted]

Not to worry:

The Trump administration, along with the Republican majority on the hill, is about to all-but get rid of the FDA.

And the EPA. And the FEC. And the FTC.

They're even trying to get rid of the house ethics committee.

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cableaddict :)

The fantasy aspect of this series - because it's set in America - is the part where money is no obstacle in health care options. If the show keeps going then they may have to address the part where bureaucracy is an obstacle by showing repercussions of the choices made so far.

Not to worry:

The Trump administration, along with the Republican majority on the hill, is about to all-but get rid of the FDA.

And the EPA. And the FEC. And the FTC.

They're even trying to get rid of the house ethics committee.


There was a tweet put out by donald taking credit for stopping the Republicans' sneaky midnight effort to get rid of their Independent Ethics Oversight (watchdogs) as the very first thing they did "in service" LOL to those they supposedly represent, but in reality, it was citizens whom stopped them in their tracks.

Remember how President Obama was blocked by Republicans for 8 years? The same methods which worked for Republicans was used by citizens to block them on this. It worked. And, it worked again with the recent push back against removing scientific facts on climate change and other government agencies. Here's what they did, how it worked and how it is still working:

https://www.indivisibleguide.com/web/

Pure Genius does a great job of showing the complexities involved with medical ethics. Imagine what happens when information is filtered through interests of capitalism and theocracy rather than being presented based on scientific fact.


~~~ "Thinking" involves a lot more work than simply "having a thought"! ~~~

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re: "because it's set in America - is the part where money is no obstacle in health care options."

That has nothing to do with the fact that it is set in America, that is true anywhere. Contrary to the delusional fantasies of those who know little about how the world works, money is an obstacle in *every* country in the real world. The NHS in the UK turns down treatments that cost too much, if anyone bothers paying attention to what actually goes on in the rest of the world.

re: "Imagine what happens when information is filtered through interests of capitalism and theocracy rather than being presented based on scientific fact. "

That is making the strange implication there is someplace in the world where information is presented based on scientific fact, which isn't the case given the scientific illiteracy of most of the mainstream news media, not merely fictional television programs. If the comments are referring to the odd idea that the government could ever be a competent arbiter of scientific fact, the very concerns regarding Trump illustrate that is a fantasy since there is never any guarantee that someone who values science will be elected.

Both major parties have elements that push scientifically illiterate views, there are anti-vaccine activists within both major parties. There was much scientific (and economic) illiteracy within past administrations and Congresses from both major parties. Obviously its a concern when the president may be noticeably more scientifically illiterate, which is why there need to be checks and balances on the power of the president and the federal government. Thomas Jefferson noted long ago that we haven't found angels in the form of kings to govern us, nor have we found angels in the form of politicians and bureaucrats to do so since then. The public constantly needs to be on guard against flawed information, from many sources, and can't merely expect information to be "filtered through" some sort of magical "truth" filter. The best approach is competition of myriad sources to let people sort things out for themselves, as the competitive free market allows.

re: "complexities involved with medical ethics"

It is a cartoon simplistic level view of them. At most it highlights the existence of problems with medical ethics, a field full of nonsensical views driven both by profit (e.g. those who profit from dialysis working against payment for kidney donations) and on the flip side by those who hate profit (those who hate money so much they don't mind people dying for lack of a kidney as long as it keeps money out of the process, ignoring somehow all the money made by doctors and by those who run the transplant system and high paid medical ethicists who argue that "of course I should be paid well for my ethics views, but donors deserve no compensation for their sacrifice, it is evil to involve money in the process").

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Contrary to the delusional fantasies of those who know little about how the world works, money is an obstacle in *every* country in the real world. The NHS in the UK turns down treatments that cost too much, if anyone bothers paying attention to what actually goes on in the rest of the world.


I've only personally been in need of medical care in 4 different countries outside of the US, including the UK but my work in human rights, specifically, femicide, has given me decades of exposure to health care realities in a more global sense.

From an American POV, what those whom live in countries with universal health care (pampered populations by comparison) fail to grasp is that there's a difference between a system which is based upon a shared value of health care as a basic human right and one which is based upon a survival of the fittest perspective. Does socialized medicine need great improvement? Yes.

Now, if America could only rise up to that imperfect standard.

Contrary to the delusional fantasies of those who know little about how the world works... and...if anyone bothers paying attention to what actually goes on in the rest of the world.


Conceit and disdain DO limit the capacity for fair-minded, reality-based, critical-thinking. If the shoe fits...

~~~ "Thinking" involves a lot more work than simply "having a thought"! ~~~

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re: "health care as a basic human right and one which is based upon a survival of the fittest perspective"

Unfortunately those who make that claim often push for more government intervention in the system without understanding the realities of how governments function in the real world, rather than wishful thinking about how we'd like them to. Economists study things like public choice theory regarding how governments should be expected to function based on incentives, and data that shows how they actually function. The main problem with our current system is government intervention to benefit special interest groups, as this page explains in detail with links to sources and comments regarding global comparisons:

http://www.politicsdebunked.com/article-list/healthcare

Since as Nobel laureate economist George Stigler explained decades ago in his work on regulatory capture: ""as a rule, regulation is acquired by the industry and is designed and operated primarily for its benefit"

The outcome of a system doesn't depend on what you think of its morality or its intent. Supposedly the former Soviet Union and other communist countries "cared" more about providing things like food equally to everyone, in contrast to free market countries. In reality they led to food lines and suffering, since the road to h*ll is paved with good intentions. Free markets worldwide have led to a global drop in poverty, regardless of whether that is the intent of its participants. Charities and government aid are enlisted to deal with those that don't prosper, though overall greedy selfish capitalists have helped far more people even though that wasn't there intent.

Free markets deal with basic human nature rather than hoping it will change. They enlist personal self interest to serve the public since the products that best meet people's needs are those which prosper, regardless of whether people dislike the fact that some people may be motivated by "impure" things like selfishness.

Overall the US system is mostly undermined by government intervention, but despite that its outcomes are among the best in the world. There are misleading statistics out there regarding healthcare systems where the rankings, like those from WHO, are based in part on whether the system is single payer or not, rather than the actual outcomes of treatments (or others where they don't factor in the non-healthcare system factors like the prevalence of conditions due to lifestyle and genetic factors, rather than the outcomes of treatment).


re: "conceits and disdain." [...] "critical thinking".

Nowhere in the real world are there unlimited resources. My disdain was for those that seem to think that a government approach would magically provide unlimited resources. They aren't engaging in critical thinking.

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It was merely her view that according to FDA rules it wasn't ready for human trials, which of course means they could get in trouble for violating those rules. Obviously the point is that the people at Bunker Hill disagreed and felt it was ready. Merely because she works for the government doesn't mean she is right, if anything there are incentives for her to be wrong.

The FDA is notoriously conservative regarding such things since bureaucrats get in more trouble for approving things that have problems than they do for the lives lost or suffering that happens while a drug approval is delayed. Doctors and policy analysts who have examined the issue feel the FDA keeps medicine behind at least a few years behind where it could be. The approval process in different parts of the world varies depending on the medical niche, different places are better about different sorts of approvals. I know in the world of ophthalmology many doctors say treatments tend to be approved in Europe a few years before they are approved here.

Thomas Jefferson long ago explained we hadn't found angels in the form of kings to govern us, nor have we magically since then found angels in the form of bureaucrats to do so either. In addition to incentives to be risk averse, they also tend to be buddies with people in industry.

Most don't wish to see people harmed, but selfish incentives can bias people's thinking and rationalize behavior that benefits themselves. Existing products don't like competition so they tend to try inflate the risks they see for new treatments to delay them. Existing products earning $ have more resources at their disposal than those pushing new products. Nobel laureate economist George Stigler won his prize for work on the theory of regulatory capture, explaining decades ago that: "as a rule, regulation is acquired by the industry and is designed and operated primarily for its benefit"


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If a patient is terminally ill with no chance of survival I see no reason for the FDA to tell the patient he can't try some unproven treatment. He's going to die anyway and if he's willing to be the guinea pig so be it. What's the worse that can happen? He dies? Duh.

"Vulgarity is no substitute for wit".

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