Wednesday, February 6, 2019

The Stuff of Nightmares: Do UWS Patients Feel Pain?

I really don't understand the medical ethics, soi-disant, of the prolongation of "life" in patients in a chronic vegetative state with  no consciousness and zero chance of recovery.

The newer term for this medical state, a better and more sensitive descriptor which has been gaining traction recently, is "unresponsive wakefulness syndrome" (UWS).

I would never want to be trapped in such a horrid state, and would not wish that on a worst enemy, if I had such a thing.

My greatest vicarious fear and worry for these individuals is that they might be experiencing pain at some level without being able to articulate any cry for help. This agony could go on for years because of the senselessness of our medical sustenance policies.

I'm not talking about people who stand some chance of recovery at all. I'm talking about the cases where people stand no chance of recovery. Some have been on feeding tubes for decades. Sometimes nearly half a century.

And then I read an article like this one, and the horror is just magnified. Because here is potential proof that possibly a third of these people have the capacity to feel pain. And hospitals are not using anesthesia when surgeries are performed. Why can they not err on the side of caution? It's insane.

In the U.K., the heartbreaking Tony Bland case set a new, moral legal precedent that respects the right of the human being without agency (but possibly the capacity for prolonged physical pain) to be freed from his or her corporeal prison.

In Bland's case, the significant destruction and atrophy of brain tissue, combined with scans that revealed no cortical activity, meant that the ethics of the situation was easier to argue. I expect future legal battles will vary based on the extent to which someone could argue for possible conscious activity.

There have been a few, rare instances in which it is possible that a form of communication might have been established with some of the small minority of UWS patients who might maintain a degree of consciousness. I’m referring to experiments in which UWS patients were asked to visualize different (binary) images to answer “yes” or “no.” Initial results look promising, so it would be unconscionable not to continue in this endeavor. As science progresses, we must use every means at our disposal to try to reach these people and ascertain their mental state, if it can be articulated. Wouldn’t every one of us expect the same, should we be in such an unimaginably horrible plight?

But what's most troubling is that even when individuals have expressly stated in writing or otherwise that they would never wish to be kept alive in such a state (and studies show most people would not want this) this desire, nay, this plea, is disregarded, or else there is a protracted legal battle lasting years before the wish is granted.

Here is a great summation of where the medical ethics stands today, an article from 2016. It includes a discussion of the SSA, the so-called "slippery slope argument," and looks back at the high-profile Schiavo and Englaro cases.

One hopes the future is more humane.




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