Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, February 28, 2012

Quality of Life...A Concept Which Has Outlived Its Usefulness



       I have a dream...that the phrase "quality of life" will be forever banned from our language.  These words, which I encounter on a daily basis,  provide no meaning, no clarity, no objectivity and do confuse to no end.  These words contribute to a judgmentalism which often results in a rejection of life, of living and an understanding of suffering.
       Is "quality of life" a criteria by which we justify the movement in some areas of our country toward "assisted suicide?"  Is "quality of life" the criteria which we assume to be a basis for accepting a variety of eugenic beliefs?  Is "quality of life" the criteria which we use to place Do Not Resuscitate Orders on the infirm and the disabled?  Is our definition of "quality of life" the reason that the infirm and the disabled are institutionalized and removed from their only safe haven...family and loved ones.  Is "quality of life" a reason that we fail to take extraordinary measures to  preserve life?  Is "quality of life" a reason used to justify growth attenuation and whose quality of life are we referring to?  The child's or the adult's?  At which point is intractable suffering sufficient to justify termination of living?  And, at which point is "quality of life" a merely subjective phrase to justify unjustifiable actions?
       Of course, health providers have attempted to quantify "quality of life"?  Economists, sociologists, medical groups, psychologists have all attempted to quantify and objectify "quality of life" indicators.  Are the variables money, friends, spouses, location, the environment, sufficient health?  Are the contra-indicating variables pain, persistent vegetative states, immobility, lack of communication abilities, coma?  What about the simplistic definitions emanating from the "quality of life project?"
        I believe that we often attempt to define quality of life in order to establish a criteria to end life.  Assisted suicide initiatives, legal only in Oregon, Washington and Montana and much to my great dismay on the ballot in my Massachusetts in 2012 (the U.S.), rely on self-definitions and self-perceptions of quality of life and a determination whether life is worth living.  Extensive studies in Oregon which concerned assisted suicide indicate that motivations and people's reasoning is quite clear.    The main reason for choosing to die was the "loss of autonomy", followed by "loss of dignity" and followed by "loss of bodily function."  Should we be honest and say that all three relate to incontinence and have little to do with intractable pain.  The latter was far down the list.   Is this perceived indignity a criteria for "quality of life?"

       "Quality of life" perhaps has more to do with the outside observer than with the spirit of those being observed.  Living is  supported by family, by friends and by society, it is an acceptance of the simplicity and innate dignity of life.  It is a communication from society that incontinence, immobility, pvs, and all others conditions (medical, social, economic, etc)  are peripheral to the nature of life worth living.  Perhaps life itself is the only indicator of the "quality of life."  After all, what is essential is invisible to the eye.  Unfortunately, it is the observer which determines that life is not worth living, or perhaps, the society's communication of what constitutes dignity.  Societal determinations pollute a desire to accept life as it is.


       Human beings are undefinable, incapable of being reduced to an illness, a diagnosis, a condition or a life state.  Human beings are life and life is something cherished, nurtured and preserved.  It is only the perceptions of others and the clouded vision of society which reduces the lives of men and women, children, the aged, the widowed, the infirm to a set of criteria which purportedly define "quality of life."  Allow life to begin, to cease, to be altered only in the "aloneness" of the person.  There should be no definitions, no indicators, no reasons...just my opinion, just to allow another perspective to rise to the surface.  Perhaps, I am wrong....

12 comments:

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    1. Thanks, Claire. Always appreciate your validation.

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  2. A sound piece, profound to its core and so I am wary to comment. It is true that the intimation of life, its potential is a kind of bridge that we rarely ever get to cross. Society is busy burning its bridges to realization of unfettered communication and growth between us.
    Why is it that all science fiction I have read, which gave us atomic energy, space travel, biological weapons and so much more decades before they ever existed always portray our future societies as automated in everyway: communication, interaction, provisions of needs calculated, quantified, distributed according to formulae?
    I used to think that it was merely because our natural tendency to think the worst of a situation but now I know it is because the worst of our abilities tend to manifest themselves when we turn away from who we are as souls in need of coexistance, towards the distilled mental attitudes of exponential individualism.
    And for solutions don't we look to visionaries? Yet the dangers of societal change associated with advances in technology which attempt to empower the individual, so often seen in science fiction serves only as commentary, a cautionary tale at best, while we march forward to valuing life less and less.

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    1. Eric, your words also speak of truth which you have learned through your journey with Segev. I don't now why we turn away from the most vulnerable...perhaps it's fear, perhaps it's a tainted individualism or narcissism, perhaps it's the comfort of indifference. It's wrong and there was a time where I believe we, as a society, we evolving to a higher level of consciousness and care...I don't know any longer. I suppose future generations may just ours rather harshly.

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  3. I removed it as I typed it off-line and a bit was missed off ROL (Roar of laughter!)
    Brilliant Post Phil!  Funny enough I was thinking about Fall for Oatie at School today and wondering what my be best for him (to get around school) and remembered another boy similar age to Oatie who gets around with sticks.  His mum doesn't really have much to do with her son as she employes a team of nannies... (I'm not judging her as a mother) but that's what she does... which made me think about wealthy families with kids with disabilities Vs families who might be struggling to make ends meet...

    All the reasons for quantifying the quality of life are all down to economics...  burden of the state, costs, lack of help - due to the state of the country.

    I know Startrek isn't real, but as Eric rightly pointed out we've ended up living the imaginations of people from a few decades ago... so if you think that if there wasn't "money" involved as there was no need for money anymore... would the debate of quality of life still exist?

    Say if we had help, in our case ABR was officially recognised, parents weren't out on their "own" and all that goes with it the tiredness and isolation etc... we had all the help that we desired... inclusion, certain people in society weren't jerks...no recession or whatever is the cause of that latest political/economic blunder...  Would more people be cared for at home... rather than in institutions...?

    I really loved one of your previous posts about "God" being an energy source... and I feel that the gorgeous souls, the purity that these kids have, that the Adams and the Oaties have are vital role keeping the balance.  They  have no malice, revenge, vendetta, alternative agenda, its just pure love.  Why haven't the "experts" done a quality of life on an 'serial murderer'?

    I'll never forget when in a group of mums they were talking about special needs kids better of dying and another mum was pretty kicking the mum who was saying it like "Mel's here..." and then she turned to me and said "oh, I didn't mean YOUR son... I was just saying!"

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    1. Mel, yes...we too have heard the comments that perhaps it would have been easier if Adam died (from the mother of one of his closest friends) or perhaps it's good that you didn't have to make a decision to pull the plug. People make comments like that so cavalierly ... without regard and thought; it's simply more evidence of how life is devalued. Of course, "I'm not talking about your son." Heard that also.

      You are also correct that economics is a factor and it shouldn't be. Society should be the great equalizing factor in allowing all parents to adequately care for our kids. We are one society or are we a society where it's "every person for themselves?" Makes you wonder...

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  4. I struggle with this all the time, and I have no answers. As a mother (and I can only speak for myself and for the myself that is a mother), I wonder about the intense bond one forges with one's child -- it begins in the uterus, quite literally, but often spills over and definitions, particularly if the child is completely dependent on one forever, become blurry.

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  5. I clearly understand the bond of which you speak. It is both an honor and a terror simultaneously ... many of our realities are blurry much of the time. I suppose we all write to help the process of clarity for ourselves...Thanks.

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  6. Beautiful.
    It reminds me of this talk by a Doctor who works with wounded Soldiers flown in from Iraq. She talks about how the most important aspect of healing is having loved ones close.
    Here is a link, if you're interested: http://www.cfah.org/hbns/archives/getDocument.cfm?documentID=22417

    Anyway, fantastic post. Thank you.

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    1. I enjoyed the link as it makes so much sense to me...parents, especially of teens, who are deployed have to deal with situations where those kids engage in risky behaviors? The integrity of parent-child bonds far surpasses all and there is really nothing which can substitute. It presents a very difficult situation which is so hard on kids. Thanks for the comment...

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  7. Wow, Phil. This post was really deep. My view of 'quality of life' is that it can really only be assessed on a case-by-case basis by the individual living the life, and not by any external entity.

    Furthermore, I believe 'quality of life' to be very subjective. For instance, suicide is much more common here in the US, where many of us arguably live a much higher 'quality of life' than in rural Africa, where peoples' lives are much more difficult.

    There is a psychological theory (the name currently escapes me because I just woke up) that essentially states that that which is achieved through hard work and suffering is more greatly valued by most individuals than that which has simply been given.

    It stands to reason that in rural Africa, more people work so much harder to keep their lives going that they would never dream of ending them.

    Although living a life of few resources and hard work sounds like there is no 'quality of life' to many Americans, these people are less likely to end it all than a suburban teenager.

    I would imagine living with a severe disability is much the same - the energy invested in living gives that life more inherent value to the individual, not less. Of course, I'm just speculating based on psychological theory.

    And now, as my comment has gotten long enough where I feel that I owe you an apology, I'm going to wrap this up. Thanks for the post! :)

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    1. Thank you for sharing your thoughts and you never have to apologize for length...give me fodder for much thought. I enjoyed the linkages between hard work, entitlement and self-destruction. I believe your insights are on target...hard workers simply don't give up and members of the disability community are among the hardest ow workers, even on the most simple task. Thanks for your response which is quite thoughtful as usual.

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