Wednesday, September 17, 2008
And I Cried...
K-Lo links to London Telegraph and a story about the misdiagnosis of Persistent Vegetative State. (Remeber Terri Schiavo?)
There is so much that could be commented upon about this story, but I shall limit myself to one area. WE DON'T KNOW - so much. It is the nature of things that we often have to make important decisions in an information void, but can we really afford to make death-dealing decisions in such a void unless there is unanimity?
I have written before about how carefully I was "handled" when these decisions were confronted with my father and he was a much more straightforward case that PVS. The flow of information to me was carefully controlled. Fortunately, I am just smart enough to get what I needed on my own. Unbeknownest to the doctors caring for my dad, I had been on the phone to specialists around the country - personal friends actually.
The Schiavo case comes to mind. The problem there was simple disagreement amongst those that loved Terri. I fail to understand why in the face of such disagreement, and the face of so many open question and possible mis-information, we cannot create a default to life.
There really needs to be a fundamental change in how this is done legally in this nation. The essential legal question is "who gets to decide?" This is in essence a question that floats around "Who is going to pay?" A question that still applies in a disputed situation. If we make the laws such that there is a default to life in a dispute, who will pay to maintain the life? Hopefully the party favoring life, but if they cannot, that is one tax I am willing to pay.
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The biggest, most tragic clinical myth about brain injury today is that PVS can be reliably diagnosed by bedside observation alone. It has in fact been known for at least a decade, ever since a key survey of brain-injured patients, that misdiagnosis of the condition runs at more than 40%, a statistic originally calculated by Professor Keith Andrews, former head of the Putney hospital, and confirmed by recent surveys in Europe and North America. This means that valuable rehabilitation strategies are routinely neglected, and misdiagnosed patients end up on unsuitable wards or in care homes where their needs are neither understood nor met.Now that is in the UK, in the US, such patients may be starved to death!
There is so much that could be commented upon about this story, but I shall limit myself to one area. WE DON'T KNOW - so much. It is the nature of things that we often have to make important decisions in an information void, but can we really afford to make death-dealing decisions in such a void unless there is unanimity?
I have written before about how carefully I was "handled" when these decisions were confronted with my father and he was a much more straightforward case that PVS. The flow of information to me was carefully controlled. Fortunately, I am just smart enough to get what I needed on my own. Unbeknownest to the doctors caring for my dad, I had been on the phone to specialists around the country - personal friends actually.
The Schiavo case comes to mind. The problem there was simple disagreement amongst those that loved Terri. I fail to understand why in the face of such disagreement, and the face of so many open question and possible mis-information, we cannot create a default to life.
There really needs to be a fundamental change in how this is done legally in this nation. The essential legal question is "who gets to decide?" This is in essence a question that floats around "Who is going to pay?" A question that still applies in a disputed situation. If we make the laws such that there is a default to life in a dispute, who will pay to maintain the life? Hopefully the party favoring life, but if they cannot, that is one tax I am willing to pay.
Technorati Tags:sciavo, life, pvs, misdiagnoisis
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