This is an incredible confusion, and I'm angry to see so many medical authorities and administrations taking the same stance: no, it's never too early to know. The more the information the better everything. What could be too early is to act, supposing that by "act" is meant any predefined medical action. However why would it be any "too soon" for an awareness awakening by the sick individual that would bring a healthier lifestyle?
Last thing I'd like to add, you just have to tell the individual about the trade-off and risks of the early act too, and this additional information will be enough to cancel any supposed danger of the early diagnostics information.
When you think that giving some information is dangerous, then actually it's because you need to provide the targeted individual even more of what info you have.
It's just hard to take in that info.. Your average patient is not really capable, especially when delivered life-changing information and requiring THEM to decide what life-changing action to take. Most in that situation defers to what the physician recommends, which brings us back to the current situation.
One root problem here is the lack of a firm connection between test result and long-term prognosis. You can have a supersensitive test, but if the prognosis varies wildly anyway and the possible procedure to do carries significant risk, the test has limited value.
One general rule is that you should not order a test unless you're prepared to act on it, and the guidelines for when to act on the PSA levels are still debated.
There are lots of other tests and pathologies and remedies that make sense to screen for (that can, like you say, make the patient go for a more healthy lifestyle etc).
This is outdated. PSA is a very valuable test as it can flag you for new tests that can be performed short of a biopsy (4kscore, genetics, MRI, ultrasound). And biopsies are getting better at detection as well.
I think that your premise is that the knowledge that the doctor would have to pass to the patient in order for the latter to make enlightened choices would require squarely a long and tedious medical training.
To which I would suggest that
1/ no, the knowledge to have for this particular test results, likely (and less likely) prognoses, and the associated possible medical acts and risks, is not equivalent to a full medical training, as it is a tiny bit of one specialty. But I acknowledge that it may require quite some time.
2/ there is no need to apply the same policy to every patient, and you can choose to only allow tests to the patients who went through the basics training evoked in 1/.
In the end, if somebody wants to go through the process to get the knowledge to be able to deal with the information, why to deny it?
Plus, that would make a nice incentive to get people to know better their own body.
Well I agree fully that there are patients who are smart and could take in the info (for that matter, lots of doctors also end up as patients), and I'd hope their treating doctors give them any info they ask for and get them involved in the aspects. After all, in this specific case I'm pretty sure you can get a PSA taken by yourself even and then the cat's out of the bag.
But in a broader sense, what I was thinking of was that when faced with a shocking piece of info ("you might die and there might be nothing we can do about it" etc.), most people don't stay very composed - there are several different reactions and phases and one is certainly "I want as much information as possible and I want to be involved in all decisions" but I'd argue it's not the most common reaction and even in that case, it's a crisis reaction and maybe not as logically driven (or productive at all) as it might seen at first.
So then you'd first have to figure out how this specific patient would react before deciding to do the screening and if you just guess, you'd probable be criticized at some point, so you instead make sure you follow the national plans and recommendations..
Then the (sad) fact is that you usually have maybe 15 minutes allocated in primary care to say hello to a new patient, listen to the symptoms or concerns, examine, make a plan, inform the patient, say goodbye, dictate the journal. You can't spend hours educating the patient. I'd wish this was different (but then again that applies to any service interaction, even your car mechanic or whatever).
- proposing bundles formation + test(1), of course much more expensive than just test, but allowing access to a broader range of tests.
- new job description, "medical teacher for citizens", giving (possibly customized) formations to people (and documents certifying they passed), and then these certificates would be useful later to know which patients already understand which aspects of medicine.
I think that would make nice ideas for startups, and I for one would be a customer.
As for the "emotional" aspect, when receiving shocking news, I don't think that withholding information is a solution, quite to the contrary. In a lot of cases, people don't feel well and imagine the worse, but they actually are fine. Other people feel good and actually are very sick. If an information leads to bad diagnostics, they should know, because if not now it would be required later anyway. If the information does not lead to a 100% accurate diagnostic, just quickly get sure that your patient understands basic stats/probas, and then explain to them why the diagnostic cannot be certain and why some benefit/risk trade-off holds.
Any of the "formations" evoked above could include some lesson on how to deal with bad news about oneself.
(1) of course I mean "medical test" here, like the ones to guide diagnostics, not "knowledge test", although these too would be useful at the end of the formation.
PS: the 15 min/patient thing is a huge PITA, so maybe my ideas are doable only in private clinics. Even the "medical teacher for citizens" is completely outside of what is done (currently) in public health.
I pretty much agree with your points. But this is not what we see in reality today.
I believe that part of today's problem is knowledge, interest and incentives.
- About 40% of patients (in general) do not care enough about their health and delegate all decision making to the doctor.
- I am simplifying here: If you ask a surgeon about the best therapy for your cancer, the answer will most likely be surgery. If the same patient would ask a radiologist, the answer will most likely be radiation. Which we might attribute to people more likely to believe in their own line of work. But in reality this might be more influenced by doctors being financially driven by their administrators to maximize patient throughput.
Fortunately these decisions are usually not done by the individual surgeon or radiologist but by a cross-disciplinary team during rounds and by input from wide long-term studies categorising the tumor type, treatment options and outcome.
I don't see this. Suppose, hypothetically, that we could detect right now every illness or condition that you're ever likely to develop in the course of your life. Do you really want to read through that list? You're better off not worrying about it and enjoying your life.
I would absolutely read the list, in part because I simply value (self) knowledge. I notice that some people don't value knowledge for its own sake, and have trouble understanding those who make decisions solely for the sake of knowing, or solely to avoid dishonesty toward others, even at some narrow instrumental expense.
But also, I would read the list of because of its instrumental value:
* If I knew I were likely to die in ten years, I would live my life very differently than I do now.
* If I knew I were at particular risk for certain illnesses, I would do what I can do minimize that risk.
But what if you are like most people and trust doctors to do the right thing and they convince you that unless you treat you'll die. You go along and the doctors damage you. This just happened to a mentor of mine (67 y.o.) with a PSA test followed by radiation that fried his nerves and did nothing for the cancer which he might have lived with for the rest of his life (his father died of prostate cancer at 97). In this case the "cure" was much worse than the disease and the early detection led to the almost fatal result.
I’m very truly sorry about what happened to your friend. That is an awful thing to go through.
Without being an expert on the subject myself, I can’t say whether his doctors recommended the right course of action but he got a bad roll of the die, or whether his doctors made a terrible mistake.
But I think if they made a terrible mistake, then the solution is to make more knowledge available about how to avoid such mistakes, not to make less knowledge available about people’s health.
My father recently went through prostate cancer radiation treatment, and here is our experience. The doctor did not say that unless it is treated, he will die. He did emphasize that with the modern day treatments, the risks and side effects are much lower than that of non-treatment. The radiation treatment was non-invasive, except for the placement of 3 markers inside the prostate to guide the radiation beams. My father did have stronger-than-normal side effects, however after 3 months the side effects have gone. We were actually amazed that cancer treatment was so easy. It is now a waiting game to see whether the cancer has been completely eliminated, but the peace of mind from having had the treatment is worth a lot.
On the other hand, a family friend had prostate cancer many years before, when the radiation treatment was not available, and he had to go through surgery. The surgery caused strong side effects, and also turned out to be not successful, as the cancer spread to his bones after 10 years, for which he is now receiving further treatment. In this case, where the loss of quality of life was high, it's not as easy of a choice.
Actually the side effects of radiation are often similar to surgery in the long run. Surgery is “front loaded” and may be followed by some recovery of function over a year or more. Radiation is “back loaded”, where you see the effects creep in over time. It all depends on a number of factors but it’s not that useful to compare short term.
I can't really see how not reading the list would require dishonesty towards others.
It's probably a good idea to live your life as if you were going to die in 10 years anyway. The chance of this happening is non-negligible unless you are very young.
Similarly, as far as minimising risk of illnesses goes, 99% of what you could do is what everyone should be doing anyway: eating healthily and exercising.
Fundamentally, the paradox here is that the extra stress caused by reading the list is likely to be much worse for you than the consequences of not knowing what's on the list.
Not reading the list doesn't require dishonesty toward others, but I was making a more general point: There are lots of people who are very ready to tell "white lies" to others for the sake of those others. As it happens, I think they are often the same people who wouldn't read the list. And these sorts of people don't really seem to understand the other sort: the sort who want to know the truth even if it's not instrumental.
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On the other topics: if I lived like I were going to die in ten years, then I'd have to abandon multiple projects of mine which I expect to take more than ten years to come to fruition. I don't think this would be appropriate unless I actually had a good reason to believe my premature death would come to pass.
I mean live as if there's a reasonable chance that you'll die in ten years. But even so, do you get no intrinsic satisfaction from the work involved? Is there no-one who could continue the projects if you died? If it's 'no' to both questions, then maybe you should stop doing them anyway.
There are always tradeoffs. I get intrinsic satisfaction from the projects. But I think both about the short-term and long-term. If I expected to die in 10 years, I'd do different things, because the balance of costs and benefits would work out differently.
There's no 'pretence' involved in not reading the list. I'm perfectly aware of my mortality. I just don't see any value in placing bets on what's going to kill me.
Everyone is living with an invisible list made up by them in their minds. This is what drives people to exercise, eat healthy foods, get vaccinated, and wash their hands. This just clarifies the list, perhaps adding some items, perhaps changing the priorities.
Nonsense. Catching cancer prior to stage 3 is HUGELY important. With prostate cancer it can be cut out or irradiated with a high cure rate at stage 2. Once it spreads though you are in a very different course.
I think you're talking about cancer screening rather than the hypothetical in my post. I was not suggesting that no-one should ever get screened for any illness. But it's a balance. Too much screening and testing can be just as harmful as too little - or perhaps even more so. Prostate cancer is actually a classic example of this (see e.g. https://www.health.harvard.edu/healthbeat/the-pros-and-cons-...)
>Your hypothetical includes every illness and thus, cancer.
I think there's a quantifier scope error here. I was saying "you don't want to see everything on the list", i.e. "it's not the case that for all x, you want to see x". You seem to be reading this as "For all x, you don't want to see x". Whatever the right answer is for specific cases (such as prostate cancer), I'm certainly not saying that all testing or screening is pointless.
The paper you link to has a grand total of two citations listed on Google Scholar.
You changed your statement. What you said was “Do you really want to read through that list? You're better off not worrying about it and enjoying your life.” This unambiguously refers to the list in its entirety.
No, you're still making the quantifier scope error. I'm saying you'd be better off not reading the full list. It doesn't follow from that that you'd be better of without knowing about any of the items of the list. Your mistake is anbalagous to inferring (B) from (A):
(A) John doesn't want to eat the whole pie.
(B) John doesn't want to eat any of the pie.
I'm saying that you're better off not eating the whole pie / reading through the whole list. It doesn't follow from that that you're better off without any pie / without knowing any of the test results on the list.
That's why the list in my hypothetical scenario is comprehensive. If I was saying that you'd be better off not knowing anything, then my hypothetical scenario could just have been "you get some kind of test result giving you information about some aspect of your health", rather than an unrealistic scenario where you get completely comprehensive information about your future health.
You are misusing academic language to mask a modification to your claim under interrogation. You specifically argued against “an awareness awakening by the sick individual that would bring a healthier lifestyle“ by stating it is “better off not worrying about it and enjoying your life.” You are now attempting to amend that claim by saying well of course you’re in favor of knowing about the bad things.
So what does this mean, that you actually support looking at a hypothetical comprehensive list, just that it should be sorted by severity so you don’t have to sweat the small stuff? That would be a fundamental modification of your original claim which had no such qualification.
My claim is consistent and perfectly simple. I'm saying that you'd be better off not knowing everything about your future health. It doesn't follow from that you'd be better off not knowing anything. As you seem to have difficulty understanding that, I've been trying to spell the logic of it out in explicit detail. For reasons I don't understand, you appear to interpret that as a modification of what I originally said.
What exactly would you be better off knowing? In general, that's a complex question and I don't know the answer. But certainly there are clear examples of things that are worth knowing (e.g. your weight, your blood pressure, whether or not you have TB ...)
>by the sick individual
I did not specify that the individual in the hypothetical scenario was sick.
Now you are claiming you didn’t argue against that claim you responded to, which specifically referenced a “sick individual” achieving an awareness “that would bring a healthier lifestyle.”
Indeed your claim was clear and simple: you disputed it, replying it was better not to worry about it and “enjoy your life.”
You have simply dressed up poor reasoning regarding “you’re better off not knowing” by pretending you were only referring to the things not worth knowing, not the things worth knowing, the other part of the set of all things. This is spurious argumentation designed to distract from the fundamental shift in your claim — that of course it is never too early to gain awareness of medical conditions that could motivate lifestyle changes and inform choices.
In the end I am glad you came around to agreeing with the comment, if by a circuitous route.
The quoted claim that I responded to was the claim that "it's never too early to know". Any my claim was made in relation to the hypothetical scenario that I spelled out, where it was not specified that the individual in question was sick.
I think you think I'm changing what I'm saying because you're still making the quantifier scope error. If you read through my comments paying more careful attention to the quantifier scope, you'll see that I've been saying the same thing consistently. I can only make sense of your responses if they are objections to "for all x, you're better off not knowing x", rather than to what I actually said. This misunderstanding is evident from several of your first comments. E.g. "Your hypothetical includes every illness and thus, cancer", and "This unambiguously refers to the list in its entirety." These replies only makes sense if you imagine that I'm saying that you don't want to know anything on the list. But this simply isn't what I said. Or at least, it's the least plausible interpretation of my original comment, and inconsistent with the explanations I've repeatedly made of what I meant.
I don't know why you are so reluctant to accept this. Early in this thread I politely pointed out the quantifier scope error in your interpretation. And the wrong interpretation that you insist on attributing to me has me saying something implausibly ridiculous (i.e. that all medical tests are bad!) Go back to my examples (A) and (B) earlier. Do you have difficulty understanding that (A) does not entail (B)? I doubt it. So why is it difficult for your to understand my claim about the list? I'm baffled.
The pie analogy is a good one. Every piece of the pie is nutritious and worth eating (let's say). Similarly, every item on the unrealistically comprehensive list of medical information may be useful in and of itself. But just like you can have more pie than is good for you, you can have more information about future problems and risks than is good for you.
Last thing I'd like to add, you just have to tell the individual about the trade-off and risks of the early act too, and this additional information will be enough to cancel any supposed danger of the early diagnostics information.
When you think that giving some information is dangerous, then actually it's because you need to provide the targeted individual even more of what info you have.