Feb 24 2011

Locked-In and Happy

A recently published survey of patients suffering from locked-in syndrome finds that many of them (47/91) report being happy. Only 18 in the same group reported being unhappy, and only 7% reported suicidal thoughts. Of note, there were all chronic patients, and longer duration of locked-in syndromes (LIS) correlated with greater happiness.

Locked-in syndrome results from brain damage, from either trauma, stroke, or similar event, with damage at the level of the brainstem. This results in almost complete paralysis – patients cannot move their arms and legs and cannot speak but they can partially move their eyes. Many learn to communicate by blinking in a yes/no fashion.

From the outside this certainly seems like a horrific situation. The ability to communicate, socialize, and engage in anything recreational is severely limited, and indeed patients with LIS do complain of these things as limiting their happiness. But this study suggests that we should not just assume what people with chronic LIS are feeling.

The study itself was a self-reporting survey, and so has some limitations. Family members were often present during the questioning, and this could certainly affect the responses – patients may not wanted to have their family members know how unhappy they are. Also, only 91 out of 168 patients invited responded to the survey. That’s a small percentage, and allows for a significant self-selection bias. Perhaps most of the people who did not respond were so severely depressed they were too apathetic to participate. So this survey is certainly not the last word on the question of happiness in LIS patients.

But still 47 patients reported being happy. It might be surprising that anyone can find happiness in such a situation. Study author, Steven Laureys (you may remember him from other blog posts I have written on coma) commented:

“That some locked-in syndrome patients self-report happiness may suggest they have succeeded in adapting to their condition of extreme disability.”

This makes sense in light of previous research that shows that people are remarkably adaptive. We tend to anchor our perception of happiness to our current situation. This is good and bad. It means that when good things happen to us they make us happy, but only for a while. Then we adapt to our new improved situation, which becomes our new baseline, and we judge our happiness based upon that. Good fortune does not make us perpetually happy. This might also explain why people who are in a relatively good situation compared to us seem ungrateful for their good fortune.

At the same time we adapt to the bad or even horrible things that happen to us. Hardship can become a norm, and we can find happiness even in situations that most people would find oppressive or depressing.

In other words – we tend to overestimate our happiness or unhappiness in relatively better or worse situations respectively. We think that if we win the lottery we will be perpetually happy, but this is not what happens. Or if something terrible happened to us (we get divorced, death of a loved-one, professional failure, whatever) that we will be perpetually miserable. But people adapt and persevere.

This phenomenon might also explain how people find themselves in abusive situations. We can adapt bit by bit to the slowly increasing abuse, until we find ourselves in a situation we never would have imagined we would tolerate. From the outside it then seems unbelievable that someone would put up with such abuse, and we might naively think that we would never tolerate such a situation.

This survey suggests that some people can adapt to even the most extreme disability and reach an emotional equilibrium to the point where they can describe themselves as happy. Laureys argues that this study should make us more cautious before considering euthanasia for patients with LIS (this is not so much an issue in the US, but is in some European countries). This is reasonable (but again this survey should not be considered definitive). At least it argues for waiting until enough time has passed. Patients may think that their initial misery will last forever, but this study suggests that it many cases it won’t.

Ultimately this study supports other research which indicates that humans are a highly emotionally adaptive species – for good and for ill.

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