Sunday, March 27, 2005

Living will lessons from the Schiavo case

Dr. Elizabeth Whelan and, citing her, Charles Johnson, describe the report by William Cheshire as "junk science." It's not altogether clear to me if they mean specifically the suggestion by him and other neurologists that MRI and PET scans are important or even necessary in diagnosing PVS, but it appears that way. Naturally, I don't want to buy into junk science, but the MRI/PET point seems so plausible that I'd like to hear some details to support the irrelevance of those tests to a PVS diagnosis before I reject them as junk science. Neither Dr. Whelan in her TCS column nor Johnson citing her column offers those details. I'll keep looking.

In the meantime, at the risk of behaving ignorantly, I obtained a living will form from the post legal office (I'm military) and am returning Monday to finish it off with a lawyer, with the intent of clarifying a couple of key points the Schiavo case has brought up.

First, I want to add this provision: "I require that I shall not be declared in a state of persistent vegetative state (PVS) without first a Magnetic Resonance Imaging (MRI) test and Positron Emission Topography (PET) scan being performed upon me and the results of those tests being consistent with a diagnosis of a PVS."

Second, disconnecting life support is one thing if the life support in question is a respirator or heart machine. Ending treatment and allowing me to die is one thing if I have a disease that will kill me regardless of my nutrient intake. Ending my life by denying me sustenance when there is no fatal illness present and I would continue to live out a normal lifespan if fed is something else altogether. Of course I never want to suffer brain damage, but if I do, I still don't want my cause of death to be starvation or dehydration.

Therefore, I intend to replace a line in the existing living will text that reads "I expressly authorize the withholding and withdrawal of artificially provided food, water, and other nourishment and fluids" with something close to "I expressly require the provision of food, water, and other nourishment and fluids--artificially provided, if necessary--in the absence of any terminal disease causing suffering that would be exacerbated by these."

Again, perhaps it is junk science to require an MRI and PET scan for a PVS diagnosis, but as long it's my life in question, or that of any other person who outlives Terri Schiavo, perhaps it's not asking too much that I, or they, require at least a few details to demonstrate that rather than Dr. Whelan's or Dr. Cranford's authority alone and in the meantime insist on such tests before accepting the PVS label.

Michael Schiavo insists that he's following through on what Terri had said she'd want in these circumstances, and many others insist his actions are the ethical course. I hope that if, instead, she had written in a living will to continue all provision of nutrition and hydration (except in case of a fatal disease made only more painful by them), that course could be universally acknowledged as the ethical one. I hope also that no one who ever controls my fate will find ethically unacceptable my requiring the same for myself.

It appears too late for her. It's not too late for the rest of us.

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