Where can I obtain a legal 'Do Not Switch Me Off' (DNSMO) order? It is extremely difficult to detect consciousness in coma and PVS patients so how can anyone have the right to decide to terminate their lives?
The unfortunate (or fortunate depending on how you look at it) tale of Rom Houben, classed as Persistent Vegetative State (PVS) and stuck with that label for over 20 years, demonstrates our current lamentable lack of knowledge about how to detect 'conscious' activity in the brain. I would have thought, given this situation, that the default position would be to leave all such cases connected to all necessary life support until we have the knowledge to deal with them correctly. But is this the default position?
I very much hope that current scientific studies and brain imaging techniques such as fMRI are forcing neurologists and neurophysiologists to move away from some of the prevailing opinions of ten years ago, such as those of the American Medical Association (AMA), whose conclusions on the subject are cited in 'The End of Life: Medical Considerations - Persistent Vegetative State'.
The terminology here is confusing because the brain is a massively complex organ but medical specialists in the field have to have a way of classifying the presence or absence (or degree) of consciousness in their patients, so they have come up with a system of labelling. So terms such as PVS, MCS and coma are often used. There are many problems with this labelling system. The problem for Rom Houben was that he got stuck with a label which meant that there was, for two decades, minimal intervention to find out what was really happening in his brain.
It seems to me that the labels are really about the legal classification of the presence or absence of consciousness, so that specialists and lawyers can feel comfortable giving advice to the families and advocating decisions about withdrawal of life support (or non-intervention in secondary complications etc). This all becomes horribly financial. The cost of maintaining a PVS patient on life support is expensive and could be estimated in the region of £100,000 per year. No wonder there is so much pressure to make a decision on withdrawal.
There will certainly be many cases of brain damage where it is obvious to a neurologist that conscious thought has been wiped out. Cases where little is left intact but 'old brain' structures providing autonomic functions, can be clear cut. But often there will be some degree of uncertainty about whether the patient has lost all consciousness. Here's another obvious terminology problem: what constitutes consciousness anyway?
I'm not approaching this from an ethical or financial standpoint. How about looking at it from the point of view of probabilities? There is a high probability that technological discoveries in the field of brain scanning will mean that some PVS-classed patients, such as Mr Houben, once re-evaluated are found to be in a 'locked in' state, conscious but unable to communicate. Others will be found to be in a dreamlike state - living an internal life but unlikely ever to return to the 'real' world. Yet others will be found to be teetering on the border, just requiring the correct delicate intervention to bring them back. There is also a high probability that the appropriate 'delicate intervention' techniques and technologies will become available.
Nobody knows how many patients are in the above-mentioned states. That's the point - the brain is too complex for specialists to know for sure. The classifications don't take account of that, or what 'might' be possible for these patients in future. My point is that they are still alive and they can wait to find out what will be discovered and what will be possible for them. Just don't switch them off.
There's a societal attitude problem here also. This one is the 'death with dignity' meme. I have absolutely no idea what that's all about. Death is the most undignified proposition you can't imagine. If their brains are gone they won't care about dignity. If they are still alive then give them the dignified chance to let you know. If they are in pain give them massive but non-lethal quantities of pain-relief medication. If you don't know which of these situations pertain then don't use death as the default position. The 'dignity' that loved ones 'seek' for the PVS patient is imposed by them.
Perhaps cases such as that of Rom Houben will spur an almost instantaneous rethink on the treatment of such patients, with DNSMO stickers appearing on beds and wheelchairs in hospitals across the globe. But perhaps not. Deathism runs deep.