My step-grandfather found himself in a similar position about 5 years ago. He'd been diagnosed with terminal cancer, and was in for a long decline. He opted to refuse food, and died within a few weeks. Sadly, that's the only option available to many who are ready to move on.
I remember him comforting his wife and daughters, telling them not to be scared, even as he lay hallucinating and dying. He'd lived a good life to an old age, and he was ready.
We owe our parents better. Death is a part of life.
I'm not responding to the specific story in the article, but -
Several of my grandparents had dementia of one sort or another. They clearly could still enjoy life, but completely differently than when they had their faculties. I wonder, if you could have gotten the question through to them, if they would have felt their lives weren't worth living. It doesn't seem the same question to ask a 30-year-old, "would you like to keep living at age 80 with no short term memory?" and to ask an 80-year-old with no short term memory, "is your life worth living?"
This is really insightful. There is actually a huge body of research that does exactly what you suggest, and it largely supports your implied conclusion: people prefer death in hypotheticals, and prefer life when the question is no longer hypothetical.
I agree with the research, but that does sound oddly tautological. Of course the people sampled preferr life! You can't sample the ones who didn't... (One would hope that was controlled for though.)
I imagine it's also for tracking how far through the article readers get. That would be useful feedback for the writer: "Katy, you lost 44% of the audience after page three..."
This just made me donate an extra $100 to the SENS Foundation (sens.org), which is working on curing the diseases of aging (many of which aren't considered "diseases" by the regulators at the FDA, so many are dramatically under-researchers despite the massive amount of suffering that they cause).
Yeah, this made me cry. My grandfather has been bed-ridden with throat cancer for months, unable to get better or die, unable to speak, losing his mind from all the painkillers, his relationship with his wife breaking under the strain.
It may end up only being a very short period of time in human history where we are advanced enough to prolong life with these type of stopgap measures without being able to treat the causes.
As somebody who has been in this spot and known many more who have been there, it was a good article. But I had a hard time sorting out the political bullshit. I eventually got overwhelmed by it and bailed out.
Doctors peddle their wares on a piecework basis; communication among them is haphazard; thinking is often short term; nobody makes money when medical interventions are declined; and nobody is in charge except the marketplace.
No. This is not true. If the marketplace were in charge, the people who got the service would control and be responsible for paying for it by making free and informed decisions. Instead, this is a case where regulation is in charge -- payments are made based on arbitrary rules set forth by well-meaning people. People who might read articles like this and think gee, if we only made up a few more rules, or had some really smart guys in charge of the right stuff, we could fix these other unintended consequences we made last time we mucked around. There is no need for some uber-doctor who could somehow take the place of the buyer. There is nobody who can effectively take the place of the buyer. That's one of the main structural problems of the system. It's not that the marketplace is working -- it's that we've perverted and destroyed the marketplace and instead we have a free-for-all for handouts based on policies created by whatever gets votes. Which will continue to get worse.
Wonderful writing, though. I am always amazed at the capacity of folks to see their entire life experience through their own filters (including me) regardless of what the actual facts are. I hope writing this helped her reach closure and say goodbye
It's not that the marketplace is working -- it's that we've perverted and destroyed the marketplace and instead we have a free-for-all for handouts based on policies created by whatever gets votes.
When did an efficient marketplace for medical services ever exist in the United States? "Buyers" have always depended on the ethics and professionalism of doctors; very few people have the education and sophistication necessary to second-guess them. People have always tended to trust doctors, if only because it was the least bad option, and when they don't trust doctors, the result is a thriving market for superstition and quackery. So if the buyer's decision is reduced to which doctor to trust, then you need a way to compare doctors' performance. Creating a way to compare doctors' performance would be a big undertaking requiring some kind of unified, centralized push for standardization -- almost certainly by the government.
There may be other ways to actively construct an efficient market, but simply removing the perverting force of regulation will not restore a previously existing efficient market, because the market for medical care has never been efficient, regulation or no.
Hi. Future doctor here. I agree with both of you (I don't think it's paradoxical to do so). To augment your point, consider that if doctors are left to regulate themselves, you run into the additional problems of self regulation (or lack thereof, for both thoughtful and malicious reasons but generally to bad effect).
Patients, even in the information age, cannot yet synthesize enough information to generally be intelligent, independent consumers of medical care. There is too much bogosity that has to be filtered out, and most people aren't good at that. (What??? Drug X killed 1 person once??? Well I'm not taking it! [Nevermind that Drug X has saved hundreds of thousands of lives.]) I don't think I'm being elitist, because physicians suffer the same problems, though perhaps to a lesser degree. While they might be more informed consumers of health care generally, a cardiologist probably doesn't have any strong, evidence-based opinions of which is the best treatment for their cancer. (I mean, besides fearing doxorubicin.) Their training in understanding the primary literature is probably their only advantage (and their training in outdated chemotherapeutic agents from medical school is probably their major disadvantage).
> Patients, even in the information age, cannot yet synthesize enough information to generally be intelligent, independent consumers of medical care
Most people don't know anything about cars, nor are even able to comprehend the complexity of your average vehicle, yet through trusted 3rd-party sources manage to find and purchase these extremely complex machines in a mostly-free market. Maybe as a future doctor you can explain why trusted third-party certifications would not emerge to protect the public if the government stepped out of the process? (I am genuinely curious)
Health care is like auto repair more than it is like purchasing an auto; you were born with this vehicle. I don't understand enough about cars to decide if I should buy Fuel Additive X that's being heavily marketed. Whether I buy it or not is pretty unimportant, because it's just for my car.
If someone is trying to sell me an angioplasty, how am I supposed to decide for myself if I need it? Unfortunately, guessing wrong about the necessity of an invasive procedure is more risky than choosing the wrong fuel additive. No consumer guide can answer that question - and if it can, it can just label itself "medical school" and I'll respect that. Let's say that some guide says "angioplasty does not reduce mortality except in the setting of unstable angina or myocardial infarction, so don't get it." The doctor could come back and say, "yeah, but you have diabetes and that guide didn't look at studies with patients with diabetes." (Stuff like this is true and critically important to understanding clinical trials.) Or maybe you have atypical vascular architecture so the guides don't address that. I'm basically trying to get at clinical equipoise. Clinical equipoise occurs more often than you might think; it's a time where well-meaning doctors can disagree with one another because there is not specific enough data (or none at all) to answer the question at hand. I don't see a guide handling that.
(Note that I'm saying nothing about whether or not patients can choose physicians intelligently - I think they do it quite well via word of mouth - but I'm referring specifically to the consumption of medical care like medicines and procedures.)
First, thank you for your thoughtful and detailed reply.
> Note that I'm saying nothing about whether or not patients can choose physicians intelligently
I don't think I communicated very well... I was referring almost exclusively to this. Even this might be too specific... picking a good "provider" (e.g., a "brand", one level above a physician) might be the best an individual could do (since evaluating an individual physician might be too difficult).
It's all academic, really. Since the government pays for medical services directly (via Medicare and Medicaid) it's a given that the government has to pay for a huge organization to vet the individuals and groups its reimbursing. This means there's not as much of a "hole" for the private market to fill...
To me at least, that comparison actually makes me lean the other way, given how filled with corruption and fraud the auto market is (especially auto repair, which is the closest analog to health care). If the free market delivers health-care like it delivers car mechanics, then no free market please! I would love to be able to take my car to some semi-trusted government repair shop, even if it charged 2x as much and provided mediocre service, as opposed to having to try my luck at some shady local outfit, armed with no more information than some yelp reviews to determine which shop to go to.
(I gather the dealers used to be this option---expensive but trustworthy---but it seems that lately dealerships are franchised with little enough oversight that you can't really trust them either; the Honda dealership near me is particularly shady.)
> Creating a way to compare doctors' performance would be a big undertaking requiring some kind of unified, centralized push for standardization -- almost certainly by the government.
I find this a dubious claim. We have entire thriving industries of third parties who evaluate complex products and services. I don't see how medicine is any different in that respect, from, say, finance or engineering.
Things that would make those quantifiers very rich:
(1) Objectively assessing the severity of illness, regardless of what illness (or constellation thereof) the patient had.
(2) Objectively assessing the degree to which a physician's intervention improved an outcome, and the distance between the true outcome and the best outcome (and the null / no treatment outcome).
I think that those two make medicine qualitatively more difficult to quantify in a useful fashion. (Though there are lots of useless ways to quantify medical interventions and physicians.) If you think you have some good ideas for solving those two problems, you have the chance to become very rich; please contact me if so (seriously).
I appreciate your elaboration... it really has me stumped. I understand the extreme difficulty of objective evaluations of individual performance in highly technical professional fields. But to the extent this problem is intractable, I'm not sure how adding government makes it tractable. Maybe I'm coming at it from the wrong angle?
Yes I trust the doctor, hospital, and manufacturer to provide me with completely unbiased information on what stuff I need for my health. The problem is, the only people who can interpret that information are the same people who directly profit from my choice. They will suggest unnecessary and potentially harmful things. I guess I could go to medical school to really understand things well enough to make a truly informed decision. That would be great for the concept of separation of labor!
Of course I am probably just being paranoid. We should instead head back to the good ol' free market medicine days, when anyone could put anything in a bottle and sell it as a patent cure-all. Back then people lived way longer, and had way better options for medicine.
Please note: I'm not saying the system isn't messed up, I'm saying you solution really isn't much better.
You're presenting a false alternative: socialized medicine or anarchy. What we need is a free market with the government protecting individual rights (including against fraud), along with intelligent consumers.
Also, I suggest you should only trust them to some extent. You need to understand the information well enough to make the decisions, like the mother in the story, where at the end, she treated the doctors as expert technicians, but she knew only she was responsible for the decisions of her life. Even if you have an excellent doctor, your life is your own responsibility.
We don't have the proper tools to maintain and repair our bodies like we can with our houses and cars, at least not completely. What we got is medicine too imprecise to repair many parts of the human body.
Story aside, a few days back there was an article, http://news.ycombinator.com/item?id=1424893, on how the NYT would ban the word "twitter" from usage by their writers. Nevertheless, the author uses the word "googled" (page 3). And that is part of the beauty of the English language - new words and new meanings. No doubt, the "ban" will be lifted within a year or two.
Great article. I have a similar outlook on life, I would rather die than lose my mind, and I discussed this with my wife already.
I think the point is not the pacemaker. But the elongation of life and not seeing death as a good thing. If we always chose to prolong life, under any circumstance, then people profit (a dying person needs lots of medical care) and their caretakers only suffer. The person, I don't know, is it better to live with a half-working brain? Is it even living at that point?
I think while people want to live, people need to face death early, and tell their loved onces what their wishes are. And hopefully this sort of situation won't happen, or not for long.
I have gone with the theory - if it is anything but my brain, use all the machines / treatments (too paranoid that they'll find a cure / fix 10 seconds after I die). If my brain is damaged, just let the body go, because what was I has already left.
I dont think you have any idea of how harsh treatments can be. I went through radiations and invasive surgery to treat cancer. I am already wondering how much more I will be willing to endure and permanently loose if the cancer spread. I am scared to not even have a peaceful and descent way out if things get too tough. I am under 30.
No, I am well aware of how bad treatment can be. I am just not willing to go quietly unless it is a problem with the brain. If it is mental impairment then I am already gone.
My step-grandfather found himself in a similar position about 5 years ago. He'd been diagnosed with terminal cancer, and was in for a long decline. He opted to refuse food, and died within a few weeks. Sadly, that's the only option available to many who are ready to move on.
I remember him comforting his wife and daughters, telling them not to be scared, even as he lay hallucinating and dying. He'd lived a good life to an old age, and he was ready.
We owe our parents better. Death is a part of life.