The value of subjective patient reports

Yesterday I was speaking to one of my professors about the emerging receptivity to subjective patient reports in the scientific literature.

One of the big challenges being faced by cancer survivors are serious cognitive deficits, partly due to the effects of treatments and also to the effects of disease.  However, these deficits are often not addressed in the treatment that cancer survivors receive.  Neurological tests, such as the Boston Naming Test (where you have to say that a car is a "car" and a duck is a "duck"), often come back normal, and so -- with no objective measure of cognitive deficit -- individuals are being told that they do not have any problems.  They must be imaginary.  We used to (and still) do this with some pain sufferers.  If our methods cannot detect an underlying problem that would cause pain, we tell them they must not have any.  Their problems are "just in their heads".  Imaginary.

This is plainly ridiculous.  If a person says they are in pain, they are in pain.  In 1968, a new (well, it was new) definition of pain was introduced into the nursing field: "Pain is whatever the experiencing person says it is, existing whenever he says it does" (McCaffery, 1968).  I believe the same is true of deficits of complex functions like cognition.  If a person says they are not functioning as well as they used to, or as well as they should be, and we can't measure it -- too bad for our measurements!  The person has a real complaint, and it is our job to figure out how to improve the situation.


The greatest failures of science in my opinion occur when people fail to realize that their algorithms or models or measurements or theories are wrong.  When we are faced with information out in nature that does not fit in with our model, and we dismiss that information instead of our models.  We need to be building frameworks that CAN and DO include the information out in the world!  I was thrilled to hear of the 'revenge of the subjective' in health science!


Though we may not be able to measure a given problem at this time, if we have a good question to ask, we might be able to come up with a good answer.  The beauty of real problems is that they come with real solutions.  Just because we don't have the measurement yet doesn't mean we will never have it.

In the meanwhile, it is difficult to sit with the pain, the anxiety, and the anguish of knowing that people are suffering.  It can be equally difficult to know that some people who are complaining of certain kinds of pain, emotional or physical, are malingering and working the system for reasons sometimes good and often not.  But I believe that how we deal with these problems will end up defining who we are as a science, and that humanity and forbearance are our best bets for coming out on the other side unscathed.

Causality vs. Associationism

Depression is associated with worse health outcomes in people with cardiovascular disease.

It is.  Really.

But there is something of a debate as to WHY that is.  Is it because people who are depressed take less good care of themselves?  Of their health?  Is depression related to physiological changes that slow down the healing process in people who are ill?  Is depression actually just the conscious expression of inflammatory dysregulation in some of us?  An epiphenomenon of a cardiovascular problem, if you will?

We are trying to figure all this out.  

But I would like to take a moment to question why we are asking what we are asking.  After all, does it matter WHY depression leads to worsened health outcomes, so long as we know that it does?

Does it matter whether depression causes cardiovascular disease, or is it enough to know that the two are associated?  Correlated.  Tend to happen together.  A lot.

Nobody believes what psychologists say anymore.  We are the scientific version of the boy who cried wolf.  We try to be helpful.  We say things like "people with dogs are happier" and then (logically) we figure that giving unhappy people dogs will make them happier too!  It's not dumb.  It's cute.

Avoiding those kinds of fallacies in our field really is pretty difficult.  Especially when you're torn between being a science that wants to stay pure and being a science that wants to help.  Because if you want to help, then you really need to know HOW to help.  And to know how to help, you need to know WHY good things happen in some cases and bad things happen in others.

If only we weren't so bad at that...

However.  Hope is not lost.  We are very good at knowing which sorts of things tend to happen together.  For example, depression and CVD.  They happen together.  Self-esteem and success.  Social support and well-being.  Exercise and morale.  Yes, let's use exercise and morale as an example.  

In this excellent paper the authors show that: "Regular exercise is associated with reduced anxious and depressive symptoms in the population at large, but the association is not because of causal effects of exercise" (p.897).

Does that mean that you shouldn't bother exercising?  Of course not.  But it DOES mean that if you have been depressed and anxious, once you start exercising, you are likely to be feeling better.

The problem is: so what?  So we can't prescribe exercise to make people feel better (there is plenty of disagreement with this viewpoint, by the way), and we are left completely thwarted in our goal of being helpful.

Harumph.

But.  Let's say we were to bypass the entire problem of causation.  Let's say we were to get really crazy and say that we just weren't going to BUY IN to the whole IDEA of causation.  (Take that, Liebnitz.) And just as an aside, we wouldn't be the first.  Remember Hume: 

"Thus we remember to have seen that species of object we call flame, and to have felt that species of sensation we call heat. We likewise call to mind their constant conjunction in all past instances. Without any farther ceremony, we call the one cause and the other effect, and infer the existence of the one from that of the other."  -- A Treatise of Human Nature (taken from this very excellent slide show) 

But what we do know is that the two tend to happen together.  Associationism.

So you should exercise because people who exercise feel good.  And you should feel good because who feel good exercise.

And if you feel like crap, exercise isn't going to change that.

But if you want to change that, exercise might be something to look into.


I believe that one of the reasons associationism as a philosophy hasn't been embraced by scientific psychology is that it's more mind-boggling than causation.  However, I believe that in certain cases, getting stuck on the question of causality in health is counter-productive.  It is not helpful.

Perhaps if we identify the sorts of healthy behaviors and physiological states we find optimal, and learn how they cluster together, we will be able to DESCRIBE the kinds of healthy states we would like to move towards.  Then we can tackle the question of causality.

Indeed, if we assume that the natural state of the organism is to move towards health -- and there is evidence to suggest that it is -- then perhaps simply presenting people with healthy alternatives will move them towards health, less by cause than by osmosis.

Thought of the day: New Year's Resolutions

Making and breaking New Year's resolutions are a popular pastime.  People resolve to do all kinds of things.  Exercise more, eat better, work harder, bla bla bla.  But what for?

To be happier.

Isn't that right?  Isn't that the real reason that we would put ourselves through the torture of diet and exercise?  (I am of course not talking about all the people who LIKE eating healthy and exercising.  After all, if you're one of those people and you make diet and exercise your New Year's resolution, well that is a cop out, my friend.  A cop out that I, personally, fully approve of, but a cop out nonetheless.)

But the question to me is, will those kinds of resolutions really make us happier?

As I was travelling over the holidays I had the great good luck of having a really interesting conversation with my seat neighbour on the plane.  We were talking about life, the universe, and everything - and how it all relates to medical psychology.  And through our discussion, we concluded the following: living a full, happy life takes a lot of effort.

Now let me be clear.  I have, for many years, tried the whole work harder and be better, fitter, (read: miserable) formula because I bought it when they told me that I would be happier for it later.  Based on my study (n=1, but there are replications), that's bullsh poppycock.  Being miserable will only get you one thing: more being miserable.

The kind of work that I'm talking about here is the kind of work that will get you more being happy.  In other words, how do you work at being happy?  How do you go about living the kind of life you want to live?  Here's a quick list of steps that I have found elucidate the strange process of working towards happiness that avoids the torture-trap of working towards being miserable.

Step 1.  Identify things that you LOVE.  

The basic equation to making sure you love your life is to put more things you love in your life.  So what do you love?  For example, I just bought new curtains, and I LOVE them!  Seriously, I went from walking into my apartment everyday and being dissatisfied, to walking into my apartment everyday and wanting to applaud!  (And I'm not even done redecorating yet!)  It's so small a thing, but it's made such a difference to me.  And that's the important thing.  It made a difference to me.  So what do you love?  Cooking?  Hiking?  Beautiful decorations?  More time with friends?  All of the above and more?  Being happy means you know yourself and you know what makes you happy.  Which leads us to Step 2.

Step 2.  Do the things that you LOVE to do.

Yeah.  I have known that I love sailing for years.  I have yet to take a sailing course.  Why?!  Why do we do this to ourselves?  I mean look at how excited I am over curtains! Just imagine how happy I will be when I start SAILING!  But baby steps.  We all like to get in our own way every once in a while.  That's ok.  (That's  why this is Step 2.  It's harder.)  I say start small.  One of the reasons so many New Year's resolutions fail is that they're too darn big and we are just not ready to make so big a change.  Don't say I will sail around the world, say I will take one sailing class.  Don't say I will become a master pianist, say I will learn to play one piece, and then maybe another.  Don't say I will move into a mansion in another city, say I will buy new curtains.  And then do!

Step 3.  Repeat.
That's it!  :)