My Completely Unethical Research Study

I was lying around today noticing how I definitely feel worse today than I did a week ago, and remembering that I felt worse a week ago than I did the week before. From there my mind started to wander and I came up with what I think would be a fabulous idea for a research study that no one would ever be allowed to do.

See, the thing about research is that going back at least a far as the Nazis, but probably further and by no means ending there, you've had a whole lot of people, both well-intentioned and not, who were willing to some absolutely horrific things to other humans in the name of science. Eventually that got recognized as something of a problem, so now there's a raft of federal regulations that folks doing research involving humans have to adhere to in order to be allowed to do their projects.

And while I'm not expert in the human research regulations, I'm pretty sure my study would never get out of the gate. Which is both the right and appropriate outcome, but also a bit of a shame, 'cause it would be interesting to know the results. Anyway, here's what I'm thinking...

You take a group of people that all have the same terminal disease and you separate them into two groups. One group will be told when the treatment path they're on reaches its end point, while the other group will be kept in the dark. The docs would basically lie to them, and tell them that their treatment was still holding the disease at bay.

Here's my two-part hypothesis: first, I would bet that the people who were lied to would, on average, live longer than the people who were told that treatment had stopped working; second, I would also bet that the people who were told the truth would be happier with how they spent their final weeks than the people who were lied to.

One of the challenges with a terminal disease like mine is that you're sort of stuck on this long-term downward drift, the slope of which eventually starts to get steeper and steeper as treatments stop being effective and you begin to progress toward, well, death. But here's where my study comes in. In my case, I've definitely moved onto a steeper slope, but what I don't know is whether that's because the cancer is running rampant and/or if it's because I now know that my treatment options are gone and so I'm expecting to die sooner than I was before and so my stupid brain is causing the erosion of my health to speed up. I could be wrong, but I'd say psychosomatic symptoms can kill you just as effectively as "real" ones. 

And mine is not the only case where I've wondered about this. I remember a friend who died from his cancer last year. He was an amazing fighter. He did everything conceivably possible to fight his cancer -- and bought himself a fair amount of time. But I remember when he was told that all the options had been exhausted. It was like all the air came out of his balloon. It only took a few days for him to go from walking to immobile and just a few weeks before he was gone. The change came so fast, I wonder: was it the disease, or the fact that his doctors effectively took away his desire to fight. 

Seems a useful thing to know.

But as I say, there's no way anyone would ever get approval for a study that involved lying to a bunch of patients about their life expectancy. And thank god for that. I'd actually be pretty pissed, regardless of the reason, if my oncologist waited six or eight weeks -- weeks I could've used to strike a few more items from my bucket list -- to tell me that my disease had progressed to the point where it was time to start getting ready to go. 

Sort of like that old joke: 

Doctor: I've got bad news and worse news.
Patient: What's the bad news?
Doctor: You've got four weeks to live.
Patient: Oh my god! What could possibly be worse than that?
Doctor: We misplaced your test results which came in from the lab four weeks ago.

Some things, I think, patients need to know, even if knowing may make the problem worse. But if any smart scientist out there can figure out a way to design a study that would figure out the effect of knowing you're going to die (soon) on survival rates in a way that the IRB would approve it, you're welcome to my idea.