[jMyles]

A beautiful read, for many of the reasons already mentioned here.

I'm inclined to rethink this one question, though:

> Can a single individual patient second-guess the medical machine? Is that really their duty?

I don't know if it's anyone's duty, but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

[PieterH]

I was hesitant to write this, as I did. It's not a call for passive acceptance. There are a lot of moments when we patients need to prod and push our doctors and nurses. The machine tends to be slow and can miss important things. The patient has to provide feedback ("the pain is worse") and has to insist on the machine listening.

Yet given that, it seems highly risky to me to even be open to the notion that I can second-guess the machine. That is, to find a better treatment, using my own knowledge and that of the Internet, friends, family, etc.

The risks are well known: endless 'alternative' cures that prey on the most vulnerable, taking their money and time, and leaving them to die. It ranges from amateurish nonsense to sociopathic predation. The common thread is patients who don't trust the medical machine, and think they can do better.

So when people tell me that I can find a cure, if I look harder, my reaction is "oh piss off!," before I delete their email. That is not my duty, not within my power, not for a disease like cancer. I mean, even looking for a "better" clinic is such a major undertaking that it lives in a different universe than mine.

I do trust my doctors. They won't cure me, yet they will look after me, manage my pain, and when it comes to it, they will help me die smoothly and easily.

[ChristopherE]

I agree with all of these sentiments but I would add a few from our own experience (not particularly terminal illness, but that's likely coming soon with my wife's mass in her lung that we still can't get diagnosed) but with the medical machine in general. We have several special and medical needs children so we're constantly dealing with doctors and hospitals.

I think it's important to do your own research on different treatments and therapies. But the reason we do so is not to get our hopes up but to inquire of our doctors about the treatments. We have two questions. "What about _____?" which is usually followed by "why not?" And once in a while we get the response of "I don't know, let me look into that" and end up trying something that they hadn't considered. It helps us knowing that no stone goes unturned and maybe it'll help the doctor even by learning about (always accepted, not alternative) techniques he/she hadn't really looked into yet.

While we generally trust all of our doctors, in two cases we've found physicians that were barely competent by this method. In both cases, they arrogantly attempted to dismiss concerns or questions but when pressed they made up answers simply to dismiss us. (we say "made up" because we were given responses that directly contradict research and even the monograph put out by the drug company. But fortunately, this is the exception and not the rule.

As for alternative cures, the only way (in my opinion) those can be believed is if you put on your tinfoil hat and believe that the medical establishment is evil, every last man. If alternative cures worked, they wouldn't be alternatives. My son is severely autistic. If only I'd spend more time listening to the Internet I could use these alternative cures and he'd end up being a heart surgeon, I'm sure.

I often wonder why people do that? Sometimes it's the patients (or parents of patients if minor) but it seems to me that it's almost always friends or relatives that try to hook you up with pipe dreams and fantasies. Why is it so difficult for people to accept our realities?

[voltagex_]

>I often wonder why people do that? Sometimes it's the patients (or parents of patients if minor) but it seems to me that it's almost always friends or relatives that try to hook you up with pipe dreams and fantasies. Why is it so difficult for people to accept our realities?

Lack of education and a (worrying) growing mistrust in science and the scientific method.

[koide]

Also a factor is that some illnesses are awful and the treatments are inhumane. They're the best current medicine can do, but it's far from what you'd like the solution or paliative to be.

Thus, turning to alternatives is not necessarily mistrust in science, but a desperate search for something tolerable that could work.

Another possible factor that helps here is that many doctors are as inhumane as the treatments they recommend, and in some cases are not up to date in the latest science, so you end up having to educate them.

Although I agree that the decision to look for something else has to come from the person in the trenches, not as a well meaning (really?) suggestion from an outsider. Some people do want to fight that fight in addition to the normal fights Pieter mentions.

[gus_massa]

I mostly agree. Just two comments.

[My native language is Spanish, please don't read the "you" here as some direct advice to you, it's a generic "you".]

It's important to get good doctors, there are good doctors and bad doctors, and the default health service doctor may be not be optimal. In most situations it's not possible to get a x10 doctor that will make you live x10 more, but a good doctor will reduce the number of unnecessary and stupid medical procedures and provide better treatment.

[Some people strongly disagree with this.] Read Wikipedia article, all the links, the fist 20 Google results and then a little more. Be aware that the Internet is full of scammers, crackpots, and overhyped press release from universities, so take everything with a (huge) grain of salt. Don't expect to find a magical cure, the idea is to have a minimal understanding of what is happening, understand better what the doctors are saying and what they are not saying, the tradeoffs, the risks, ... Remember that it is not your field of expertize, so don't get too confident. (For example if you are an expert in software, think that it's a hardware problem, so there are many tricks of the trade that you don't know.)

[Create]

I am not sure you came across The Last Lecture, if not you may find it interesting:

https://www.youtube.com/watch?v=j7zzQpvoYcQ https://www.cmu.edu/randyslecture/book/

I consider myself lucky to have had the opportunity to work with you and learn an awful lot along the way. Thanks!

[shanacarp]

I think it is super important to answer yes to that question as a patient.

At the end of the day, it it your body. You are responsible for it. You may not be an expert in what all of it does in its majestic form and function, but that is why doctors, nurses, and researchers exist.

You live in it. When you are explaining stuff, be it pain or pleasure, to a doctor, that experience is mediated by the sheer fact that your doctor is not you and does not live in your body, does not receive sensory input from your body. Your doctor receives sensory input from his/her body.

Even if your doctor has extremely similar experiences, there is no guarantee that they will fully understand you and your predicaments. Most doctors in the US know what a severe sunburn looks like, and many will have had them growing up. Most also have not seen Phytophotodermatitis (aka lime disease http://www.theatlantic.com/science/archive/2016/07/burned-by... ), nor will have had them growing up. With the growth of artsinal cocktails and people realizing fresh citrus juice tastes better, it's occurring more frequently. Now there is an educational push,but that doesn't equal expedient treatment and lots of doctors recognizing on sight yet before it gets bad.

While Phytophotodermatitis is a trivial example, for patients with serious diseases (and not serious but not common ones too) the example holds and can be expanded. Patients banding together to change this is generally what causes major changes in healthcare policy in the US president,as well as direction in research. (The most famous example is in the late 90s/early 00 with aids via act up nyc. The documentary "how to survive a plague" covers this extremely well")

So yes, you totally should question. You totally have more power than you think. Act on it.

[Retric]

> I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

Try other things and odds are very good your going to make things worse and get many people killed. Yet, some people still don't use seat belts because of those tiny odds it's going to make things worse. Let's avoid vaccines, buy guns, and go vegan because clearly we are a special snowflake unlike those other drones.

Sorry, you and everyone you ever know, or even read about are going to die relatively soon. Such is life and death. But, not thinking about it well that's easy.

[pessimizer]

No - I've heard that if you eat exactly the right things, move in exactly the right ways, think exactly the right thoughts, and carefully control your breathing, you can live forever and never die. You can detect when you're in this state through visual inspection of your excrement, an inner feeling of subtle warmth radiating from the stomach or chest, a clearness of mind, and a feeling of being a conduit through which the natural order of the earth and its life flows.

This must be true, because a version of this has been told to me by 4 out of 5 people that I've ever met.

[gozur88]

There used to be a comedian (can't remember who) who joked "All those people who ate right, exercised, and got plenty of sleep are gonna be awful embarrassed when they die of nothing."

People believe this kind of stuff on an emotional level because they can't face their own mortality. I have a theory this is why we're so interested in how other people die. It's so we can disconnect other people's deaths with our own - "I don't have to worry about dying that way because I eat plenty of vegetables/don't smoke/don't drink/don't associate with violent people and therefore I don't have to think about dying."

[edwhitesell]

> I don't know if it's anyone's duty, but I think it's completely plausible for a single patient or small group of patients to arrive at a more patient-focused conclusion than the medical industry.

I think the more important take-away is each patient should find the treatment that works for them. There are many people who are fully accepting/trusting (whatever term you choose) of the "machine". It works for them, don't knock it.

There are other people who want, and/or need, to look for alternatives. Some of them work and work very well. But, some people don't have the stomach for that, or they second-guess the idea that they "could have done more".

I had a good friend die from cancer a few months ago. After the first surgery and round of chemo, his Oncologists told him all was well, full remission. About a year later, it returned somewhere else. More surgeries, more chemo, full remission.

The third time, now in his lungs and brain, they said even with surgery and chemo he had about 6 months to live. Instead, he took the route of alternative treatments in the US, Mexico & Canada. All of these treatments were by fully licensed Oncologists who have been practicing for 20+ years.

Every 3 months his "machine" Oncologists said they were surprised to see him for another follow-up visit. This went on for 5 more years.

[Retric]

> Some of them work and work very well.

Bull. People get better randomly, but pattern matching makes this really hard to accept. After all, you best get your lucky hat before the big game just like 100,000 other people.

As to caner, day one they are going to tell you your odds of survival long term and they are never 100%. https://xkcd.com/931/

[edwhitesell]

>> Some of them work and work very well. > Bull. People get better randomly

I completely agree. I also know that some treatments work for some people.

> but pattern matching makes this really hard to accept.

I'm stating that a patient needs to find what works for them. Sometimes that's surgery, chemo, radiation, all of the above or no treatment at all.

I've known friends & family members improve, or not, on some/all of the above. The point is that everyone is different. People react differently to identical treatments. That's why some people develop diseases and others don't in the first place.

> As to caner, day one they are going to tell you your odds of survival long term and they are never 100%.

The only thing 100% is NOT surviving. How you come to your end is your choice. Some people chose to do that on their own terms, with their own treatments that may provide better quality, and/or quantity, of life. You don't have to make that choice, but you can't tell someone else not to.

[Retric]

Flip a coin H/T. Call it H ends up T. We really want to say T was a better choice. But, before the flip they are identical options.

Do chemo* and die in 2 months. That may seem like a bad choice. However, you don't know the outcome and can only guess at the odds.

Saying ahead of time you don't think the odds are worth it is one choice. But, you can't look at the outcome and then say the choice was wrong it must be in the context of uncertainty.

As to alternatives that's doing nothing while playing make believe. But hey, some times doing nothing works.

*Chemo, retro virus, wonder drug, or something with actual odds of working.