Adam Dzialo

Adam Dzialo
Our son, Adam Dzialo, age 30

Tuesday, October 2, 2012

YES on Question 2 (MA): Death with Dignity

     On November 6, 2012, Massachusetts residents will be faced with a Ballot Initiative (Number 2) which is referred to as "Death with Dignity."  Simply described, it would allow a licensed physician to prescribe a lethal dose of medication to a terminally ill adult patient who meets specified legal criteria.  The terminally ill patient is any adult person who has a prognosis of death within six months.  The person must be deemed mentally competent by their physician, defined as someone who can make and communicate medical decisions .  The request for the lethal prescription must be made twice orally and then witnessed and presented as a written request.  Also, there must  be 15 days between the initial oral  request and the second oral and written, witnessed requests.  The terminal diagnosis and capacity to make medical decisions must also be verified by a second physician.  Many other safe guards, including a provision for allowing for "unwilling providers", are detailed in the law. 
      Numerous bloggers and disability advocates, for whom I have the highest respect and admiration, are strongly opposed to this measure.  Steve Drake and Diane Coleman of Not Yet Dead, John Kelly (Massachusetts)  of Second Thoughts, and Bill Peace of Bad Cripple have advanced very cogent arguments in opposition to physician-assisted suicide.  The Massachusetts Medical Society is equally adamant in its opposition. 
      While the Archdiocese of Boston is opposed to this ballot initiative, I dispose of their arguments and resent their intrusion into the debate. The cardinal's reference to Mother Theresa and her care for the dying reeks of hypocrisy.   MT, with millions in the bank, ministered to the dying of Calcutta not with medication to relieve the pain but with the admonition that they should suffer and smile and enjoin the redemptive suffering of Jesus.  The Cardinal's extraordinary claims demand extraordinary proofs which are profoundly absent .
       I am the father and caregiver of a severely disabled son and I do not want to in any way infer that this ballot initiative applies to the disabled community or anyone other than a terminally ill and dying adult person.  I believe that life and the life source is sacred and that every effort be made and every service be provided to enhance, value and treasure the disabled, the elderly and the ill.  Human compassion should have no boundary.
      The above opponents of this ballot initiative articulate sound reasons for a defeat of the initiative.  They claim that physician assisted suicide devalues the disabled and that there are alternatives like hospice and palliative care.  They claim the law provides insufficient safeguards against unscrupulous relatives.  Existing reality allows for Advanced Directives, for DNR's and suicide is not illegal. Questions arise about the accuracy of terminal diagnosis.  Other questions are driven by the facts that society fails to provide necessary supports for the dying, necessary pain relief and a high quality of care which re-affirms the dignity of the person.  Issues arise which attest to the facts that the dying consider themselves or society considers them a burden, emotionally and financially. Big Pharma and health insurance companies are portrayed as agents of death.  Not insignificant among the arguments is that of the "slippery slope."  I will not attempt to refute any of these arguments. Many are possible, many may be minimally accurate, some are "straw man" arguments.  They are arguments about groups, about generic values, about assumptions of choice of death over life.  Few reservations allow for a respect on individual decision-making.
       I was initially opposed to Question 2, now I am very much in favor of the ballot initiative...I believe that death is a highly personal experience, and it can be excruciating and drawn out for the individual who is ill and for their families. Sometimes what is best and right for the individual is to claim that moment of death for themselves, knowing they are freeing themselves from...needless pain and suffering.  Words like intractable, unrelenting, intolerable, insufferable, agonizing, torturesome, unbearable describe a human being racked with unremitting anguish.  Is there a time when life is not worth living?  Is this not a subjective experience of the soul which the person should be allowed to terminate?  Who gives any person the right to say "you must live within the confines of a body when your soul has already left?"

       It is important to probe the depths of human experience .  Some people embrace infirmity, disability and pain.  They value every moment of existence.  They inspire, they overcome, they are men and women of strength and spirit, even in facing their ultimate demise.  Not everyone is so, not everyone should be expected to be so or commanded to be so.  All the supports and medications 
should not deprive a person of his or her right to say, this is enough!
     Furthermore, it is argued, we ourselves have an obligation to relieve the suffering of our fellow human beings and to respect their dignity. Lying in our hospitals today are people afflicted with excruciatingly painful and terminal conditions and diseases. They can only look forward to lives filled with yet more suffering, degradation, and deterioration in the short term. When such people beg for a merciful end to their pain, it is cruel and inhumane to refuse their pleas. Compassion demands that we comply and cooperate.

      Modern science and technology have extended life, sometimes with unendurable pain, long beyond what nature intended.  The body and the psyche is not limitless; pain and agony is not always amenable to amelioration.  Many treatments are more noxious than the disease itself.  Nature has provided a relief from terminal illness, a peaceful death. Neither nature nor human dignit  require that  persons lie  unattended and in agony  in poorly staffed and uncaring facilities drugged into semi-consciousness. This situation is unacceptable and immoral, but it is a reality.  For some, hospice and palliative care are sufficient and, for some, merely extending life is dispassionate.  The more science intrudes in the processes of nature, the more we fight to allow the inevitable to occur with peace.
      My choice to terminate my life in the face of a terminal disease without excruciating suffering is my decision.  It reflects not on my family, my supports, my level of medication, the aged population or the disabled community.  It reflects on MY desire to leave in peace when faced with the inevitable.  It is often said that the soul leaves before the body, so the shell is left to deteriorate in agony.  I would doubt that a loving, caring deity would deny me a peaceful death nor judge my decision.  How can a voter deny me the right to request medical assistance is make the passing peaceful.

       Many will ask the question, is death ever preferable to life?  A better question, perhaps, could be framed:  is life ever preferable to a bad death.  No one should ever have to die a bad death...that is the crux of Question 2,  "Death with Dignity."  And the role of physician as healer?  It does not conflict with facilitating a good death; it is very consonant with preventing a bad death experience.
       Please vote yes, in Massachusetts, on Question 2, "Death with Dignity."
       Additional resources which answer objections of opponents.




18 comments:

  1. First Phil i believe this to be an excellent discourse on the need for allowing individuals the right to decide. Unfortunately the whole process becomes mired in controversy, not because of religious opposition, although many believe that is their basis for opposition, or nefarious elements, nor utilitarian concepts but because the systematic organization of self- death leaves very little room for individual concerns. As a society, as a social order, as family units with complex interdependencies I for one question scenarios where chosen death can be a very selfish act.
    You see, also with all these safeguards, the actual opportunity for someone to choose an out well be severely limited. In countries like Holland physicians cut corners, speeding demise. Their influence on establishing severity of illness, severity of suffering, is far too great, no where is this more evident than when euthanasia is discussed vis a vis exceptionally disabled children( which to my knowledge is not yet practiced in the USA, as it is in the Netherlands).
    Many people have a moment of crisis and crave death, only to pass the moment and not even recall having expressed such a desire,i have seen it several times myself. Recently bio ethicists have been looking into the prevalence of clinical depression in terminally ill patients, offering that first treating the depression is essential prior to signing off on a death wish.
    Whether we agree with it or not we are organized as a society and therefore indindividuality has its limits.

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  2. I live on the other coast, but I completely agree with you, Phil.

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  3. You speak eloquently, Phil, and I agree with you completely. I fear that the endless bickering and philosophizing about this will go on and on and on --

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  4. Great post, Phil. There needs to be more people speaking about this in such a thoughtful, reasonable manner.

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  5. Your eloquence and clarity are once again shining
    I appreciate your reflection that initially you opposed the measure
    (wouldn't wanna face you in a debate!!!)
    :)
    Hope it passes
    Terri

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  6. Thanks for your comments; just to add a twist to the story:
    The only two contested referendum questions on November's ballot — physician-prescribed suicide and medical marijuana — are totally sex-free. But some of the donors trying to stop both are notorious homophobes.

    Read more:

    http://thephoenix.com/boston/news/144763-weird-politics-of-this-years-ballot-questions/#ixzz28MMDyAUD

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  7. Just shared your post on Google Plus. I know I would like to have a choice. I think if I can convince the doctors to refer me to hospice that would probably be a better choice for me. It allows for time to prepare my family for my death and to say my goodbyes.

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  8. As I am sure you would anticipate, I think you are way off base here. How you can maintain the push for assisted suicide does not apply to people with a disability is beyond me. To think the law will only apply to people who are terminally ill is wishful thinking at best. Did you not read about my experience in the Hastings Center Report? Did you not read about Christina Symanski and her death? Let me ask you this: would your son be alive today if such legislation existed when he was injured? Would doctors in a profit driven industry try and save his life knowing he would have life long disabilities? I think not. And to post a picture of How to Die in Oregon, a pro assisted suicide documentary that is grossly one sided is verging on acting like a proponent of such legislation. I read your blog for reasonable analysis not political propaganda. Sorry to be harsh. I am taken aback by your views.

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  9. Bill,
    Thank you for adding your comment to this post. Yes, of course, I read your blog regularly (as well as YOUR experience in the Hasting Center Report). I regularly follow NDY and Second Thoughts. I also read the Christine Symanski story and the Tony Nicklinson story and others. I try to read as much as possible on numerous topics as time permits.
    Do I think that my son would be alive today if "assisted suicide" as framed by Question 2 were enacted in 1998? Unequivocally, yes! We were prepared for a lifetime of care from day one and my insurance and other agencies called to ask how they could help, where did I want Adam treated, etc. (this may be a MA experience singularly). No one ever exuded anything but hope and optimism, even those neurologists in whom I had no faith (they muster up words like brain plasticity). My son will live and be happy until that moment that his spirit decides that the time is here. My job is to insure that that is his reality!
    I am surprised that you are taken aback by my views. I have written about "Taking Mercy", parents who have killed there disabled children, selective abortion, etc. If I am wrong, which is always likely, I have disagreed with some of your positions in the past...so this should be no surprise.
    I guess we must, for very differing reasons, have a divergent view of "reasonable analysis". My post was about compassion for intractable, unrelenting suffering of terminally ill people. It was about giving the dying an option for a "good death". "Reasonable analysis" and human compassion and empathy are not always compatible in my mind. But I speak for no one other myself. Perhaps a decision about "physician-assisted suicide" is not one which is subject to reasonable analysis...it is subject to a higher god...human compassion.
    I feel fine about disagreement. I have the highest respect, and I have so stated, for your writing and work as an advocate. Bill, we are often on the same page, but sometimes we read different books.

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  10. We have indeed disagreed in the past. What took me aback was your inability to see the inherent dangers real people will encounter if assisted suicide is made legal. In addition, you are promoting legislation in a state where you reside. People do not choose to commit suicide because they are in pain and want a good death; they choose to die because they fear a lose of dignity. They fear dependence. Even the inadequate statistics required by law in Oregon and Washington demonstrate this.
    Since you are familiar with what took place to me are you not outraged and deeply concerned? What took place at 2AM was legal. Does this not send off alarm bells in your mind? And what about Symanski? Her death was legal. She found physicians that deemed her terminal. I could do the same tomorrow. Could a bipedal male say the same thing? Of course not.
    Okay, your son would be alive today in my proposed question. But would all people with such an injury survive? What about a person with no insurance and no family? What about a person with a dysfunctional family life? What about an elderly person? What about a tough inner city kid? What about an immigrant? Would these people survive? I doubt it. I expect laws to apply to all people equally. Assisted suicide will be selectively used.

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  11. A person's position on an issue is a function of many things, Bill. My position on this legislation, in my state, is a function of my experience, my belief, my total distrust of the medical and pharmaceutical industries, the inexactitude of medical diagnosis, the goodness and the care of a small group of people and a belief that life is transitory and in the continued survival of self. I believe in self-determination, choice and a right to say "enough is enough."
    Yes, people do choose a good death! Sometimes a bad death is marked by intractable suffering, sometimes it is marked by a belief that a person has lived a good life and they do not want to be a burden to someone, sometimes care as the body shuts down is provided by people who have a job and not out of a basis for love. One's perception of self-dignity is subjective and can not be imposed by anyone apart from the person. I reject the concept of redemptive suffering.
    People do not want to die because they are given a "terminal" diagnosis; some choose to die because they do not want the intrusion of contemporary medical intervention; over-treatment. People die when they are ready to transition; they know and the spirit slowly leaves. Some choose and then need to transition with assistance. It's about a patient's subjective choice and conscious decision-making.
    Of course, your experience at the hands of a mindless doctor is horrific ...I would not even attribute good intention gone awry...simply, blatantly wrong.
    Yes, I would believe that others whom you have listed would survive . . . I have repeatedly witnessed it repeatedly; heroic measures for each of the groups you mentioned. The legislation is not about the sanction of murder, eugenics or the legalization of euthanasia. It is about the right of competent adults who believe they are terminally ill to have choice ... conscious choice is the highest expression of human dignity.
    I regret that my position is offensive to your beliefs and values, to your experience and to your knowledge. I simply wish to respectfully and honestly disagree and to vote my conscience, as I am sure you defend and vote your conscience. With much respect...

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  12. This is a difficult issue. I've read about your experience, Bill, and it horrified me. I was also horrified (which is probably why I talk about it so often) by Annette Corriveau's insistence that she have the right to kill her adult children with severe disabilities, based on her assumption that because she wouldn't want to live in their place, they must not want to live. I agree with Bill that there's the potential for terrible abuse with this law, creating the need for - the insistence on - constant vigilance by families, caregivers, advocates, agencies, and as much of society as possible re: how it's enacted, particularly when people with disabilities are involved.

    But I'm not against the law either. I'm not at liberty to share why this is so personal for me. But there needs to be a provision for, as Phil said, competent adults to have a choice.

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  13. British Columbia Civil Liberties Assn. memoralized Gloria Taylor: leading Canadian Death with Dignity Advocate: http://bccla.org/2012/10/in-memory-of-gloria/

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  14. Two additional resources:
    https://www.facebook.com/DeathwithDignity
    https://www.facebook.com/Dignity2012

    and an informative article:
    http://www.boston.com/news/local/massachusetts/2012/10/14/massachusetts-voters-decide-whether-doctors-can-prescribe-drugs-end-terminally-ill-patients-lives/T7mRjRsx5G9zpBdK5nd1VI/story.html

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  15. Just FYI people, Christina's death was not as a result of her condition being 'terminal'. Because her illness was not terminal, she had to pass psychological testing to determine her fit to demand the Right to Refuse Treatment and, when that made her sick enough for intervention, a Do not resuscitate (DNR). She wrote advances directives which stated not to tube-fed her when she got so sick she had to be hospitalized. A few of you seem to be mixing where in the legal sphere Chrisina's case fits. Putting a DNR in advanced directives and having the right to refuse treatment came long before physician-assisted suicide and are legal even in countries where dr-assisted suicide is not (like here in Canada, for e.g.).

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  16. Anonymous, you are right! Christina Symanski choose her death for her personal which no one has a right to judge reasons. Some disability advocates who oppose the "Death with Dignity" initiative in Massachusetts use the Christine's decision as an example of the "slippery slope" argument. It's a stretch .. her choice of death was not a reflection on the disability community; it was a reflection of her her personal choice and we should always allow for persona choice! Thank you for adding to the discourse.

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