The problem is that this doesn't generate anything of actual value, except for Prasad. It is easy to criticise medicine. It is easy to criticise any complex and difficult human endeavour. He takes the practice of critical thinking about studies and results and what they mean, something which all doctors do and are taught to do, and turns it into a blood sport which plays to the masses. There are plenty of academics who do what he does, and publish in well respected journals. At any conference where a major result is presented, people in the audience get up and ask questions about the value of the intervention, the conduct of the study etc, just the kind of things Prasad rants about. The difference is that Prasad has monetised this practice by pretending that he is the only one doing it. He writes books, publishes endless articles which are mainly reviews and rehashings of other's work and the person that hired him to a faculty position openly admits they chose him because of his propensity for scathing criticism.
This article therefore, I find largely self-indulgent and in some parts sheer nonsense. The authors style themselves as custodians of some higher art, a priesthood of common sense and clear thinking. They pull the trick of trying to cement their importance by defending themselves against a bogeyman, the force of 'commercialisation'. Of course, there is no single person or group who is causing this commercialisation, so there is nobody to question them. They also bizarrely say that they are better placed at evaluating medical evidence than the people who know most about it ('content experts'), because the experts are too enthusiastic.
At any conference where a major result is presented, people in the audience get up and ask questions about the value of the intervention, the conduct of the study etc, just the kind of things Prasad rants about.
For people with incurable conditions, "dread diseases" and very deadly conditions, the current system is already too conservative. They denied approval for a non-drug treatment for cystic fibrosis because some participants had lung bleeds. Lung bleeds are common with CF. CF is extremely miserable and has a very short average life expectancy.
There are many stories like this out there. People with horrible conditions hear the news that some new drug they were hoping would get approved has been denied by people who seem to be comparing it to some internalized standard for someone relatively healthy and not actually comparing it to "Is it better for this group of people than what they currently have?"
There are very, very expensive drugs and surgeries that get approved at times and that's a whole other issue for such communities. But it's a very real problem that some people are dying and drug approvals don't seem to actually take that into account. I've seen people say things like "Just let me live the additional five years that it takes to get these horrible side effects instead of dying before then. I will worry about the horrible side effects then."
Most people want to live, even when that involves terrible suffering. Most people want that chance. And our drug approval process is often maddeningly conservative already in the eyes of people with various terrible conditions who would be happy to be a guinea pig to have some kind of shot at survival.
It's a logic that makes sense to the people enduring these diseases, but one the medical establishment recoils from.
What's worse, the company reportedly knew about the danger of the drug, and didn't tell anyone.
Eventually the drug was removed from the market, but not before hurting thousands of people.
This particular story is about Baycol (1), but perhaps, while reading this, you may have been thinking about another similar story. It's happened many times.
If "medical conservatives" can help prevent this from happening even one time, they are creating something of value. I think it's ridiculous to claim, as GP did, that protecting people from harm does not "generate anything of actual value".
"A mistake was made so we must adjust the system to stop that happening" isn't a workable philosophy in this specific instance. There is no scenario where mistakes don't happen. A strategy that attempts to achieve the impossible is not a good idea. Tradeoffs will be made that are bad.
I can acknowledge that your story is horrible and unfair; but if that thinking takes hold in medicine (which realistically it probably already has) then people will suffer for no reason in a predictable way. It is better that at least people suffering is a surprise or at least somewhat unexpected. Decisions must be made using statistics and risk assessments rather than grasping hopelessly at certainty and happiness. We must tolerate a few bad drugs slipping through.
We need people willing to speak up and be skeptical. And whatever small reward they may obtain by doing so is trivial in comparison to the billions that pharma and their sponsored scientists stand to gain by unjustified cheerleading.
It's laughable to question the motives and incentives of skeptics like Prasad while ignoring the immeasurably greater perverse incentives in favor of approving drugs too quickly.
I can understand the desire, the hope, that a new drug might be the miracle we've been waiting for. But precisely because we so desperately want new drugs to be helpful, it's crucial to remain rational and evaluate new drugs based on what they actually do, not based on our hopes or on the claims made by pharma companies.
The better the system works and the more effective the medicines, the more deaths will be attributed mainly to adverse drug reactions. That is why we must tolerate them. We can't work towards a system where nobody dies in hospitals; but we can work to one where the leading cause of death is failure of medical care as opposed to natural causes.
The better our healthcare gets, the more likely the leading cause of death will be "nurse didn't follow the checklist", "the machine broke" or "the drugs made their body go haywire" and similar. Something has to be the leading cause of death. As we become gods unto our own bodies that cause will be human factors and mistakes.
This is optimising a complex system. It needs to be done slowly, holistically and with statistics and science. Just because one part is failing doesn't mean that the system is out of control. It might be out of control, but the evidence needs to be quite deep to conclude that because the system is very complicated. A response powered by emotions, anecdotes or silver bullet stats probably feels right but is likely to do more damage than good. This is a field where high-functioning sociopaths should be given a lot of room to make decisions; they are the ones who can make hard decisions and get to a greatest-good-greatest-number style outcomes despite that fact that gut-wrenchingly unfair and tragic thing happen every day in the world of healthcare.
What it comes down to is people die and often suffer. The fact that people are observed to die in the hospital system is not evidence. Even aggregate stats getting worse is not necessarily a problem. Arguments have to talk thoroughly about what the costs and benefits of any change is likely to be and we have to accept that death is a cost that the healthcare system is going to pay whether we like it or not; because that really is an elephant in the room with these sort of decisions.
Why should we trust the system to high-functioning sociopaths, as you said, and not listen to both sides and have a vigorous and ongoing debate?
You're right that people die, and will continue to die, in medical care. And it's a difficult and emotional subject. And people don't always make the best decisions. But I'd still rather have public discussion about every little detail rather than trust insiders (with their own, sometimes perverse, motivations) implicitly.
Nothing can bring your grandmother back. The closure you desire is unlikely to be found in trying to protect others from her fate.
I have a form of cystic fibrosis, as does my oldest son. It's just as personal for me as it is for you. No good ever comes from trying to argue whose hurt feelings or personal suffering trumps the other's.
I've been talking about medical stuff a long time. I sometimes make comments that do decently well. I also still make comments that bomb, such as this one from this same discussion that was quickly downvoted to the negatives and still remains there:
I'm only responding now to this comment of yours because it makes me completely crazy when I can't get engagement, I get downvotes and the silent treatment and people act like I'm too emotionally fragile to have a reasoned discussion with.
I'm responding in hopes that something I say will help you more effectively find your way forward in future discussions. I still have zero plans to debate you in this one.
I hope you find medications that help you.
It's like if you proposed an open source project for some purpose and someone loudly announced to the non-technical stakeholders that they'd found a list of 1,000 problems with it on the internet.
Yes, that's the bugtracker. A bugtracker has value. Someone publicizing it to people who don't understand what it is for their own self-promotion can have negative value and undermine the whole process.
Even if there was a risk to remaining where we are (as in medicine), and the plane was our only hope, it would still be wise to know about the risks and make an informed decision.
Perhaps, in theory, the system balances the risks, as you said. But in reality people often cheat, take shortcuts, make mistakes, or believe what they want to believe. We will probably always need the contrarians and skeptics to balance out the overly optimistic and the plainly dishonest.
I am not a fan of Prasad. I find him querulous and condescending, but the main reason is that I have seen him give talks, rant on his podcast and tweet about clinical trials in a way that is designed for maximum volume, sacrificing nuance and accuracy. He also has zero tolerance for challenges to his views (that he would write such an article in the OP is another sign of this). As I said, this gives the appearance of being a useful activity, but in my opinion has zero material impact on medical care or policy. He is not merely a skeptic, since skeptics do not need to write articles describing why they are not only important, but somehow more important than people actually doing research.
A good example of someone that retains healthy skepticism, writes about it in the literature, advocates for patients but still actually does research and tries to improve the way clinical trials are done is Ian Tannock .
Maybe some people are happy to become guinea pigs. That doesn't mean that other people should be happy to turn them into guinea pigs. "The patient asked for it" is no excuse for the dispensation of interventions that harm the patient.
This flies in the face of every moral rubric I have ever heard. When faced with a choice between certain death and possible death, possible death is the better bet.
The entire world seems to know this if you are in imminent danger of dying. It seems to forget it when you are dying more slowly.
It's actually amazingly horrifying to have such a condition and listen to other people justify doing (essentially) nothing for you because they imagine there is some better answer around the corner or something when you are going through absolute hell every single day of your life right here, right now.
For the record, I have a diagnosis of atypical cystic fibrosis. I am speaking from first-hand experience. This isn't remotely hypothetical for me.
My comment doesn't "basically say" anything remotely like that.
Generally, I'd suggest that it's a very bad idea to respond to comments by spelling out some thing that they "basically" or "essentially", "really" etc "say" when that thing is nowhere in the comment's original text. Perhaps you _imagine_ that I said something like that, or you _think_ I did- but I didn't. Why not respond to exactly what the comment said?
Here, I'll repeat it: just because someone, for example, _you_, is willing to be a guinea pig, doesn't mean that other people should turn them into a guinea pig.
Nothing there about "better" or "letting someone die" or anything of the sort.
>> For the record, I have a diagnosis of atypical cystic fibrosis.
It's your business if you want to discuss matters of your health in a public forum, but have you considered the possibility that you are not the only commenter who has a personal interest in this subject?
>> And our drug approval process is often maddeningly conservative already in the eyes of people with various terrible conditions who would be happy to be a guinea pig to have some kind of shot at survival.
I have no idea how else to interpret your assertion other than "Just let people die rather than let them try experimental treatments. Letting them die is the morally superior option, even if it's not what they want."
I'm well aware I'm not the only person with a vested interest. Stating where I'm coming from isn't intended to be dismissive. It's to clarify what my view is based upon.
If you are talking about circumstances other than "I'm dying and willing to try experimental treatments as my only shot at survival" then you aren't actually rebutting the line from me that you quoted. Your talking about something else.
And if you are rebutting the line you quoted, you are, in fact, saying it's morally superior to let people die rather than let them try experimental treatments.
It is true that many treatments don't have the kind of strong evidence one would like. There are multiple reasons for this. There are a few cases where a treatment has been shown to be ineffective, yet it is still widely offered. An example of this is orthopaedic surgery for back pain, or cardiac stents in certain circumstances. Usually, the reason for this discrepancy is obvious - the intervention is well compensated, and widely performed prior to evidence showing it isn't effective, so doctors just want to keep on doing it. The other reason for the discrepancy can be psychosocial factors. The use of antibiotics for children with upper respiratory tract infections is an example. Parents can be very demanding, and not surprisingly, there is a strong incentive to just prescribe antibiotics and get them out of the door.
I will not go into conflicts of interest here. It's a big topic. There have definitely been inappropriate relationships between pharmaceutical companies and doctors. This has become less of a problem due to regulation, but it is not eradicated. There is still a conflict of interest problem for hardware, eg pacemakers or hip replacements. This is why for a procedure like this, a second opinion is recommended.
Again some relevant history - there was an evidenced based medicine movement in the early 2000s that became popular. The gist of this was that applying high quality evidence to medical practice was paramount. The systematic review become much more prominent. This movement has died off, but the concept is still going strong. The problem was that this high quality evidence is often not available. The majority of systematic reviews concluded there was inadequate evidence. The second problem is that we want to move towards more precise tailored therapy for each patient, and by their very nature, randomised trials can only report average affects in large groups. They are thus well suited to relatively common problems with a clear diagnosis and relatively simple therapeutic interventions. Much of medicine isn't like this.
So although medicine strives to be evidence based, this is in many cases an aspiration rather than the reality. Nevertheless, it is important to remember that most doctors want to use the best evidence available.
As a consumer, the pragmatic approach I would take is as follows:
1A. Am I getting sound advice (part 1)? Ask the doctor for the evidence that what they propose works. This is the most efficient way. If they are vague or unhelpful in the consultation, you can ask them to send you something later. If they don't want to do that, you need to look elsewhere. I know this may or may not be practical depending on what is wrong and where you live. The best case scenario is to find a doctor you trust, and not worry about the rest so much.
1B. Am I getting sound advice (part 2)? Understand the incentive structure. When you go to a gastroenterologist for example, they get paid a lot more to do a colonoscopy than to talk to you. Unsurprisingly, they will tend to want to do a colonoscopy. This is why in my opinion, primary care is so important and the cornerstone of a good health system. What I mean is that you want to see a doctor who isn't a specialist first, who decides if sending you to a specialist is required. When you go direct to the specialist, you are at risk of getting biased advice, non-holistic care and unnecessary procedures.
2. Does the therapy make a difference? Know that effect size is important. Many treatments might be proven to make a difference, but the size of the difference is important. You should always be asking how much of a difference will this make? Do I want to have toxic chemotherapy that will extend my life a mean of 42 days? This is also inherently related to the value proposition of a therapy. You might want a chance at 42 days, the doctor might think you do or do not, so it is best to ask.
3. What level of side-effects can I tolerate? Educate yourself about side effects of drugs. It isn't feasible for a doctor to go over every side effect of a medication. They will tell you about the common problems, and also any problems which are severe and not extremely rare, and they should also tell you about side effects that may be particularly relevant to you eg if it makes you dizzy and you are a tight rope walker. Know that in placebo controlled trials, the placeboes do not have zero reported side effects, so that merely taking a pill can cause issues. Ask for detailed resources about side effects that you can take home and look at, but do not treat them all as equally likely. Decisions about whether a drug has too many side-effects or not are very individual.
The final thing to say is that some medical systems like to get in the way of actually looking after people, and the USA is a good example of that. This is again a whole other topic.
It would be helpful to catalogue all the possible failure modes of the mainstream (and not mainstream) medicine.
By the way https://medium.com/@zby/rational-patient-community-6d3617dff... are my musings about this.
The reality is most things are incremental improvements, but few diseases are truely curable. Most cancer drugs we have extend survival (by impressive amounts), or in other conditions manage symptoms. Fundamentally however you will probably still die of the cancer, and will still have the condition, just with an extended course. This is huge, and almost magic... but it isn't the miracle cures people want to share on social media.
Well I have no clue about this but what you’re saying sounds right!
Identifying yourself as simply a conservative or an anti-conservative in any context as a rule, without regard for circumstance, is just absurd to me. It's like identifying as someone who walks northward or southward. Or someone who prefers large numbers or small. There is no useful across-the-board argument that can be made for either changing things or not changing things.
A properly calibrated bias will minimize error when you don't have any further information. This is like assuming the probability of rain is low in Arizona. It does rain, but no rain is the way to bet if you don't know how to do better. A more sophisticated weather prediction algorithm should be compared with a simple one to see if it actually does better.
But you do need to think about whether false positives or false negatives are more harmful, and whether uncertainty can be decreased by gathering more information.
It’s more of an orientation. It’s saying, while you may support liberalism at different times, if you sample decisions at some arbitrarily large sample size, you will find a preponderance of decisions in favor of keeping the same rules at play that your grandfather had.
There is "conservative vs. aggressive" medicine, which is more based on individual wishes of patients and familes, and also, well, "current" practices versus "out of date" ones that have fallen out of favor due to new research and data, for sure, but to color/frame it on political conservatism vs. liberalism is a bit of a stretch.
What worries me is the part about judging the worthiness of an intervention based on a hypothetical homo economicus' decision to pay for it. These kinds of cost-benefit analyses end up feeling really strange when applied to things with strong "intangible" value.
Even if set up in a well intentioned manner, I could see these kinds of analyses themselves becoming victims of regulatory capture and being used to restrict access to care rather than improve it, similar to how the Office of Information and Regulatory Affairs has used economic arguments to gut regulations on coal ash, vaping, and prison rape.
Here's the NYT trying to be "fair and balanced", but at least linking to a critical report, and a much later Reuters article with more critical detail.
Naturally, since this malfeasance occured in the Democratic Obama administration, almost no one cared, and Twitter wasn't ablaze with complaints that Obama was killing children.
which is why the UK has NICE to evaluate everything. THe individual GP/family doctor/specialist simply does not have the time to evaluate every single treatment.
Basically the author has described what NICE does, but without knowing what NICE does. (for reference, NICE evaluates the evidence of new drugs and techniques and works out if they are safe, effective and worth the money. Where they cost lots of money and show marginal efficacy, they do not get approved.)
However despite protestations to the opposite, the author appears to be calling for a political judgement ("The expert is just very enthusiastic, but this isnt real progress") instead of an evidence based authority with clearly defined thresholds.
Dangerous twaddle basically.
> Most practising doctors are, I believe, instinctive medical nihilists even if they would never use that term: they know the limitations of magic bullets, are highly sceptical of claims for new drugs, and recognise the importance of the human as opposed to the technical. Some patients and politicians are also medical nihilists, but most are not. They are the group who would benefit the most from this important book but also, sadly, are perhaps the least likely to read it.
There's the rub: Ideal for the patients? Or for the doctors/nurses? The incentives are not at all aligned.
Reading everything we can about birth as my wife is pregnant and it's astonishing the amount of interventionism that the field gets into. It seems like things are implemented first and then dialed back only if they backfire in an obvious way. You end up with hundreds of dubious interventions: https://elifesciences.org/articles/45183
But the incentive is almost never towards respecting the precautionary principles, and almost always towards billable services.
EconTalk: Keith Smith on Free Market Health Care https://www.econtalk.org/keith-smith-on-free-market-health-c...
Both with one of the authors of the linked paper, Adam Cifu.
I understand the absolutist monetary argument: If a treatment is not consistently effective, yet costs a lot, services such as the NHS - and the pockets of those on lower incomes in other countries - suffer avoidable losses.
But for an individual with a disease with no good prognosis, the feeling of doing something positive about this thing they have no control of will certainly have beneficial effects on their mental state, and provided it is not harmful, their body.
A good example recently is in remitting / relapsing MS - patients have for a long time been prescribed large doses of Vitamin D. It turns out that Vitamin D is useful for MS sufferers, much as it is for the rest of the population (maybe a little more as a common side effect, photosensitivity, means they are likely less exposed to sunlight) but that actually they don't need anywhere near as much as they are being prescribed.
(It is still being researched, so that study may yet be wrong.)
My point is, if I told you "There's some evidence to say that this massive dose of Vit D will reduce the frequency of your relapses," you will feel like there is a positive step you can take to beneficially impact your situation.
If, instead, I say "Take some vitamin D because it's good for you" that only leaves the crushing sensation of seemingly inevitable defeat.
So I guess my point is, there is value in hope. Where there are major side effects, or the costs are wildly prohibitive, that's a very different equation and I'd probably follow the OP's conservatism on that. But I'd like to see some mention of the mental effects of this policy, as well as the positive impact on research that real-world use of new drugs has.
You just care an lot more about the results and have more time to focus on researching just one person's condition.
But you're also a lot more likely to be kidding yourself than a medical professional is. But I think sometimes they just keep that to themselves sometimes because it's too hard to challenge an idea a patient has locked on to.
No easy answers.
In my country, you are assigned a GP, but can switch with a specific administrative form. There are several well-known(via word of mouth) GPs in my town that have people deliberately switching to them due to the way they practice medicine - less short-term treatment, conservative prescription of medicine(especially antibiotics and painkillers), focus on lifestyle/diet changes and regular check-ups to catch serious ailments early. The GPs will also recommend particular specialists who have a similar philosophy.
Mind you, this kind of treatment is far from controversial. I've talked to some of these doctors and a common problem they have is justifying their costs - e.g. a patient comes over, they listen to the symptoms and examine them and prescribe...toughing it out and maybe changing your diet a bit. People feel like they're not getting their money's worth("I already know that!"). There's also plenty of people who are looking for a quick fix - e.g. I'm under so much stress at work now, I just need a pill, I'll fix my life later.
There's also plenty of people who think they can follow a strict regime and make lifestyle changes, but just can't, and it ends up being a resentful relationship with the doctor(the doctor feels like the extra time they put in is wasted, the patient may rationalize the failures as the treatment just being ineffective, etc).
All of this points to me that this is something best decided on an individual basis, when the doctor and patient have a good relationship.
The wisest of conservative physicians understand and embrace how little effect the clinician has on outcomes.
Blah blah blah.
Now if only more doctors/medical researchers were intensely curious about how to better support the body's "inherent healing properties" effectively. Then we might see a real sea change that is both dramatic and actually, in fact, honors the pledge: First, do no harm.
Edit: Would people be happier if I said "This is nonsense." instead of "Blah blah blah"? (Serious question here. It says the same thing to me and someone else has made much the same point and been upvoted for it.)
honors the pledge: First, do no harm.
Alas, in many places that pledge (and various variants) while studied, and not imposed upon students as an oath - other than through medical malpractice legislation
how to better support the body's "inherent healing properties"
That's almost exactly what most drugs are designed to do. Vaccines don't kill maladies, just hint at your body to prep for a siege. Painkillers don't kill pain, just hint at your body to ignore it. Antibiotics are an exception to this I believe (though happy to be corrected). So I'm pretty sure the majority of drug research is exactly what you've said that more doctors should do.
Likewise antiinflammatories, though sometimes inflammation itself is one - mostly autoimmune or to reduce damage when other treatment is curative.
Most drugs are in fact designed to work on their own, but are insufficient due to their laser focus, this the rest of body's mechanisms are required. Or they are directly messing with the chemistry doing either exactly as they should or otherwise known side effects due to relatively simple causation.
The about only place where it does not apply is carcinogenic or teratogenic effects.
Probably the only place where those remarks about "working with the body" apply is where we know next to nothing, such as psychiatry and very deep metabolic changes such as obesity.
Careful with analogies and broad generalizations.
As much as I appreciate a technical debate (and before I fall off Mount Stupid ) I feel like maybe we're approaching a non-question at different ends. Questions like "What is Pain?" "What does it mean to 'kill' pain?" "What constitutes working with the body?" and "If a head is cleaved in the forest, does it make a noise?" are all questions I'd love to spend hours debating, but the answers to these probably have little bearing on my original point.
The only reason I piped up is that I know how crappy it is to be downvoted with no explanation, because what you said sounded perfectly reasonable in your own head.
Apologies if I accidentally promulgated a misinformation bugbear!
I will be more careful with my analgesics and my broad general anaesthetics ;)
“Learn the rules like a pro, so you can break them like an artist.”
― Pablo Picasso
Those old-timers that did those old-time things? Sometimes they did them for very good reasons, even if they've since been forgotten.
Furthermore, political philosophy is entirely relevant in a discussion about medicine, especially w.r.t. to general philosophy of medicine, and frameworks for medical decision making.