Tuesday, April 05, 2005

Terri's Right to [Refuse to] Live?

1st draft finished a few days before Terri's death

To a large extent the courts and special interests have framed the Death with Dignity debate over a person's right to either live - or refuse to live - with a chosen level of [superficial] indignity. This indignity usually takes the form of a functional impairment such as paralysis, brain damage or loss of limbs. Keep in mind that we are not talking about pain and suffering; that is a separate issue. Nor are we talking about the heroic life-saving measures employed to stave off an aggressive terminal illness for a number of hours or days (the subject of a future post). The issue in this debate is a person's own perception of their "dignity" (separate from pain, discomfort, or an aggressive terminal illness) and the desire to keep living because of it.

Usually these rights are [mis]labeled as the right to either "live" or "die with dignity", but surely the second can't be taken literally, for there is no dignity to be found in the way a human being dies when dehydrating or starving to death with food & water sitting nearby, and nothing of value or principle at stake for the victim by "refusing" it. (Terri is not exactly being held captive by the North Koreans and starved in an attempt to corece information or treason from her. Nor is she a political activist in the right-to-die movement.) Nor is there anything "dignified" about dehydrating someone through progressive stages of incremental death; keeping someone alive artificially is one thing, but killing them by refusing to feed them without their prior consent - when there is every evidence to indicate that she is aware and feels pain - is the very definition of indignity, inhumanity, and violation of civil rights. (In Terri's case willful jurisprudence has eroded any pretense of "due" process of law.)

Perhaps the term would be more politely described as the "right to live with dignity" instead, but this obscures three important things:
  1. The other shoe dropping. (What's the downside?) Clearly for someone who can't end their own life or communicate that wish to others, a more accurate term is the "right to live with dignity or else be deprived of life".

  2. Indignity is in the eye of the beholder. The victim may be aware of their true level of "indignity" after the injury and/or want to live with it yet be unable to communicate that wish after the fact to those judging it for themselves, regardless of what the living will states.

  3. Functional impairment (and the inconvenience or indignity associated with it) is not necessarily static over time. Patients - even those with brain injuries - can improve significantly over time and regain their desired level of "dignity" even though that improvement might take a number of months or years.
Where Terri fits into this picture is a good question. There are many issues - emotional pain, lack of purpose, or a person's own vanity - that might contribute to a conscious wish to terminate one's own life. Since Terri has not communicated any of those to anyone, either before or since her "incident" (Ed: and there's evidence to indicate she communicated just the opposite on March 18 and again on March 27), what we are really discussing is the right - by proxy - to evaluate Terri's "lack of dignity" for her and make a kill/no-kill decision based on it (ostensibly according to what she would have "wanted"). So how can we be reasonably sure that we are assessing her dignity accurately when her life hangs in the balance?

If indignity is in the eye of the beholder, then dignity is even more so. The true dignity of someone incapacited and unable to communicate effectively will only be known to them, and will not depend on whether that person is "conscious" 24/0, 12/12, or even 0/24. (For what do we say to that person if they "wake up"? And what of their existence in between? Some assert that we know enough about medical science to dismiss it entirely, but truth is we don't.)

If dignity is to mean anything, then it can only be defined by the victim him- or herself; it can only be valued through their existence within the limitations they are afforded. If we were to presume to "measure" or assess their level of dignity ourselves, our so-called measurement is likely to be even more flawed than if we were merely to assess their "indignities" one by one and weigh those instead, perhaps subtracting them from the person's original "baseline". (Oops...gone below zero? Back up a step, adjust the weights accordingly, and then recalculate so that we arrive at a new measure that's still somewhere above the zero line, yet reflective of their "true" level of "dignity". You get the picture.)

In the end "assessing" someone's "dignity" from the outside is really a concept arrogated by those claiming to speak for the victim, by those who presume to make the decision by proxy as to whether or not the victim is "refusing" life under a set of circumstances judged superficially (and whose true nature is known only to the victim him- or herself). Claiming to know someone's "dignity" is even more arrogant than merely sticking to "indignities". At least there we are measuring something definite - a delta, a set of distinct superficial differences between before & after; claiming to know someone's level of "dignity" on the other hand is a meaningless charge, a construction of Orwellian vocabulary, and one designed to represent one's own decision-making as that of the victim. Thus a more apt description of the concept (and what it really represents) in our euphemistic vocabulary might be something like "the right by proxy to refuse life rather than be judged to live in a state of superficial indignity."

Let's put that aside for a moment and assume we are able to make a "compassionate" (or at least an "informed") decision as to whether someone ought to live or else be dehydrated and starved to death. In the case where a particular victim cannot speak for themselves, what is the level of "indignity" suffered that qualifies him or her as having "refused" life? Since indignity is in the eye of the beholder, we have to be able to narrow the definition of "indignity" for each person differently; there is no common definition that applies to every victim.

Also: each role (parents, husband, doctor, hospice business) involved in the decision-making may assess the victim's "burden of indignity" differently - their helpless charge once again to the parents, a broken member of a marital unit to the spouse, a set of medical profiles guided by statistics and best practices to the doctor, and a profit or loss leader to the hospice - and so there may be several competing opinions as to both how much "indignity" is being suffered by the victim, and to whether or not the victim would be expected to "refuse" life under those circumstances (or any conceivable future change in circumstances that may affect their level of "indignity" positively or negatively, as we know this can change over time).

Each role brings different perspectives and problems. The doctor is presumed to be the most detached, the most able to collect the kinds of objective data medical science is capable of providing, yet at the same time may be more indifferent or prejudiced (in favor of codified "wisdom") since their hope for the patient is the most likely of all to be "seasoned" by cold statistics or even ideology. In the case of the family members, their different perspectives may be based on their own interactions with the victim and may collide even when they have nothing but good intentions at heart.

Obviously a family member with a reason to see the person dead or incapacitated will interpret "indignity" very differently, and in pursuing their agenda may inflate the negatives, minimize the positives, or even engage in outright subterfuge. This contingency may not enter our thinking very often because of the taboos associated with even considering it, but clearly we must consider the possibility in the case of Michael Schiavo.

Since there are potentially so many competing assessments of "indignity", presumably including the victim's own (who may be sentient enough to have one yet unable to express it adequately), whose assessment pulls rank? And who decides? (The two could be different; in a model governed by regulation, one person may have priority in the decision-making process yet choose to delegate the exercise of that authority to someone else.)

And when? Timing and sequencing are key factors. If the victim is still in a coma but could come out of it at some point, do we leave them in long-term care - not as a permanent solution, but so that they may stabilize to a point where we can make a more informed decision later (as to whether to pursue rehabilitation or pull the plug)? If so, when does a long time to wait become "too long"? The complexities of a seemingly simple "right to live with dignity" issue proliferate in several dimensions, regardless of the attempts by the right-to-die lobby to overpaint a veneer of certainty, simplicity and virtue with their use of simplistic abstractions and pseudovocabulary.

In the end the only way to "simplify" the picture (in the manner of those advocating its simplicity and virtue) is to give a human being absolute life-or-death power over another - the power to starve and dehydrate to death another human being who is aware and feels pain - power that incidentally may not reflect the victim's wishes in the slightest. It's that "simple". The moral question is, do we dare allow it? The ethical question is, how concerned or disturbed should we be if we do? The "practical" question is, if that power is granted, then under what objective conditions do we allow someone to exercise that power under the guise of "speaking for the victim"?

Certainly in Florida it appears that the burden of proof is not rigorous when a spouse is involved. Whatever the spouse says in court can be taken at face value even when he has contradicted himself repeatedly at other times and in other places. Whatever desire the spouse expresses in court can be granted by the judge even when he himself has revealed - on countless other occasions - that the victim did not express such a wish [to be killed]. And the victim's physical and mental condition can be "established" by the spouse with the flimsiest of evidence even though it contradicts eyewitness testimony from countless other witnesses.

With odds stacked like this, Terri's so-called "right to live with dignity [or else]" - as realized by the Florida courts - can't be described as anything less than "the right by proxy to be refused life rather than be judged through willful prejudice to live in a state of superficial indignity." Not exactly the Right to Live or Die with Dignity the public was promised by "her" right-to-die attorney, George Felos. Nor a ringing endorsement for Terri's euthanasia.


Blogger Maggie said...

I wonder why I did not respond to this before now.

You have hit something with your comments about dying and dignity, especially being in the eye of the beholder. This is the crux of the lie that is being perpetrated upon the public in this issue.

It is also a handy way in which an abusive spouse can dispose of his or her victim without arousing suspicion over motivation.

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