Thursday, 24 February 2011

Locked in to happiness?

Imagine you were completely paralysed.


Only able to communicate by moving your eyes, or maybe blinking.

Could you possibly be happy that way? Or would you want to die?

That's the situation for people with locked-in syndrome, a condition where someone is awake and aware but unable to move or communicate verbally due to paralysis of nearly all voluntary muscles in the body (the exceptions are the eye muscles). In total locked-in syndrome, the eyes are paralysed as well.

Possible causes of locked-in syndrome include:
Public awareness of the condition owes a lot to the book and film The Diving Bell and the Butterfly, the autobiographical story of French magazine editor Jean-Dominique Bauby, who has locked-in syndrome after a massive stroke. He dictated the book letter by letter, using a letter chart and the one eyelid he could control. It's a wonderful book (and film). Read/watch if you haven't already.

So, why have I been moved to blog about locked-in syndrome? Well, a recent (and admittedly small) survey suggests, perhaps against our expectations, that the majority of people in LIS are happy. The longer they have been in LIS, the more likely happiness is. Things associated with unhappiness included dissatisfaction with immobility in the community, anxiety, lack of recreational activities, and loss of speech. The authors of the study suggest that recreational and mobility-focused activities should be increased, and anti-anxiety medications used when necessary.

The response rate to the survey was quite good (56%), but nearly a quarter of the responses had to be excluded from the analysis because some of the quality of life data was missing. These respondents may have been different from the others in some important way that has not been considered.

When I was researching disabled people's attitudes to end of life issues, one message that came over very strongly was that although patterns could be discerned, every individual was different. Able-bodied people are sometimes heard to say things like "If I had to use a wheelchair, I'd kill myself". Those of us who've become disabled and now use wheelchairs have learnt that really, it's not that bad at all - but we set our new limit a bit further along. Perhaps with permanent catherisation, perhaps with needing hoisting. People adjust, and this is shown in the study's finding that the longer someone has been in LIS, the more likely they are to be happy.

Respondents in the study were dependent on a caregiver to complete the survey: therefore only those with a good level of trust and communication would have been able to participate. Responses may also have been affected by "self-presentation", where an individual gives the responses they think they're "meant" to give to maintain their relationships.

Even more so, the happiness of someone with that level of physical dependency is going to be hugely dependent on the quality of care they receive. This is illustrated dramatically in the film of The Diving Bell and the Butterfly when the nurses keep leaving Baudry's TV on a channel he hates, without asking him his preference.

So, what conclusions can be drawn? A majority of people in LIS are happy, but it's far from an overwhelming majority. Even among those professing themselves happy, many did not wish to be resuscitated if they had a cardiac arrest. Not conclusive evidence of happiness.

I think a huge amount of "happiness" for anyone, disabled or not, and whatever the degree of that disability, is going to come down to the amount of control the individual has over their surroundings. Even if it's as apparently little as being asked what channel the TV should go on, that's control. Choosing to go out into the community (obviously with support as needed), that's control too.

So it all comes down to the quality of the person who's watching that blinking eyelid....


  1. Really interesting, I totally agree that it very much depends on the person who is watching the eye. The same with any sort of care when your sense of self and happiness is very reliant on getting others to listen and more importanty to do what you ask.

  2. So, what conclusions can be drawn? A majority of people in LIS are happy, but it's far from an overwhelming majority. Even among those professing themselves happy, many did not wish to be resuscitated if they had a cardiac arrest. Not conclusive evidence of happiness.

    Just a thought on this paragraph - Whilst this may not be conclusive evidence of happiness, I wouldn't say that this is conclusive evidence of unhappiness either. Maybe more a recognition that their body is hanging on to life by a thread, and life has slipped away except for a few major functions (ie. a beating heart and an active mind). And that, whilst they may be perfectly happy to carry on living their end days in whatever capacity they have, that once the heart stops beating, maybe it's time to call it quits. And if you cardiac arrest has resulted in brain damage then that is one more of what you had, gone for good.

    Now, I'm a bit uncomfortable commenting on the thoughts and opinions of people I haven't met, spoke to, or experienced their life. However, since being diagnosed with MS eight(ish) years ago these are all things that I have quietly pondered. I am of course, nowhere near that level of disability, and I am quite sure stance will change as I change and as I experience fluctuations in my mental health. But that is how I think I would feel at that stage of my progression (if I progress that far that is).