conversely, what if, while incapable, everyone close to me says, “the alex i know would not want to live like this. she would find this state to be undignified,” and yet i, in my state of incapacity, am not at all troubled by the level of care that i require and feel quite content? whatever is causing me to not understand information about my treatment, or to be unable to appreciate the consequences of a treatment decision, may prevent me from appreciating the extent of my dependence, or to care about it.
some might say that this is
precisely
why we need advance care planning – so that i do not let my future self be sustained in a way that my capable self considers undignified. but if my incapable self is entirely indifferent to those once-considered indignities, whose interests are we protecting by honouring this previously expressed wish?
it began to seem to me that instructing one’s power of attorney involved a problem of timing. i could instruct my husband with respect to how to make medical decisions on my behalf, but the instructions could not be contemporaneous with the need for them, nor given by the version of me who needs the help.
while seeking a workaround to bridge my current and future selves, a kind of deus ex machina emerged in the form of a well-known quotation, attributed variously to shakespeare, the bible and other sources:
the eyes are the window to the soul.
forget specific instructions about various conditions; i would instruct my husband to make my medical decisions according to what he could perceive from my eyes. even if i were unable to speak, he would know from my eyes if i had had enough. he would be able to see from my eyes if i still derived joy from life or if my days were filled with suffering.
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