Getting Down to Brass Tacks: Right to Life, State Responsibility, Family Input

Despite John Welch’s admirable asserted desire to keep the Schiavo thread on the topic of “what does LDS theology tell us about end of life care options?,” much of the discussion has predictably become a political slugfest. So be it. However, it hasn’t been, in my mind, a particularly useful political discussion. And a primary reason is because so much of the Schiavo case depends on the particular evidentiary nuances of that case. What did she tell her husband, who is he sleeping with, blah blah blah. Evidentiary questions are boring. So let’s filter them out and see where people stand on the broader issues of right to life (assuming state responsibility to enforce any right) and family wishes in general. In particular, let’s try to figure out exactly what rights are at stake in the Schiavo case. Is it Ms. Schiavo’s right to live? If so, then what do her parent’s wishes have to do with it? Is it her parents’ right to keep a child alive? These are the interesting questions.

To do away with the sticky evidentiary issues, we’ll work with some hypotheticals which are hopefully clean enough to allow examination of some of the underlying issues without getting stuck in too many blind alleys.

Hypothetical number 1

Mr. Smith is terminally ill. He unambiguously signs a form saying “if I go into a vegetative state, discontinue care.” He is of sound mind at the time he signs. His family agrees with his decision.

He then goes into a vegetative state. The doctor believes that life can be prolonged indefinitely. The family wishes to end care.

Should the state keep Mr. Smith on medical care? Why or why not?

. . .

. . .

[If you believe that the state should keep Mr. Smith alive, then you ascribe to an “irrrevocable right to life” position.

If you believe that the state should not continue care, then you believe that the right to life is revocable, either by Mr. Smith’s actions, by his family’s actions, or both.]*

If you answered “No” to hypothetical number 1, then please try out hypothetical number 2.

Hypothetical number 2

Mr. Jones is terminally ill. He unambiguously signs a form saying “if I go into a vegetative state, pull the plug.” He is of sound mind at the time he signs. Different from the first case, Mr. Jones’s parents strongly disagree with his decision. (To keep the hypothetical clean, we’ll posit that his parents are his only family members).

Mr. Jones then goes into a vegetative state. The doctor believes that life can be prolonged indefinitely.

Should the state keep Mr. Jones on medical care? Why or why not?

. . .

. . .

[This hypothetical is designed to further split the group which believes that the right to life is revocable. It directly pits the wishes of a family member — parents, in this case — against the wishes of the ill person. If you answered “no” then you believe that the right to life is revocable by the ill person. If you answered “yes” then you believe that the right to life is not revocable by the ill person.]

How these categories play in Schiavo

If you believe in an irrevocable right to life, then you believe that the state must keep Ms. Schiavo on medical care.

If you believe in a revocable right to life, but one which can only be revoked by family members’ consent (you answered “Yes” to hypothetical number 2), then you believe that the state must keep Ms. Schiavo on medical care. (Because absent family consent, no valid revocation can occur).

If you answered “No” to both #1 and #2, then you believe in a revocable right executable by the ill person. In other words, you believe that Ms. Schiavo has every right to decide to end medical care herself.

If you believe in a revocable right to life, executable by the ill person, but you also believe that medical care should be continued for Ms. Schiavo in particular, then you must believe that she simply has not executed a valid revocation of her right to life. That position is an evidentiary one, and is based on the lack of sufficient evidence to support a finding of revocation.

If you are in that evidentiary camp, your position could change depending on changing evidence of a valid revocation. For example, if Mr. Schiavo suddenly found a safe deposit box tomorrow which contained a living will for Ms. Schiavo, which was unambiguously valid and executed, and which said “if I go into a vegetative state, discontinue care” then you would, at that point, change your position to support discontinuing care.

*I am deliberately ignoring the question of whether the right to life is state enforceable. We will assume for this hypothetical that if the right exists, it is enforceable.

80 comments for “Getting Down to Brass Tacks: Right to Life, State Responsibility, Family Input

  1. Nathan Mark Smith
    March 22, 2005 at 11:29 am

    /begin threadjack/ Kaimi – I don’t agree that evidentiary questions need to be boring. Schiavo is a good example of (1) why questions of how we allow people to officially “prove” things matter and (2) the potential for due process protection to have something to do with “process” for once. /end threadjack/.

  2. Bryce I
    March 22, 2005 at 11:31 am

    Isn’t the legal issue the right to die, not the right to life?

  3. Pris
    March 22, 2005 at 11:49 am

    Kaimi: I too agree that “evidentiary questions are boring.”

    I think a further, more polarizing, question concerning the revocability of a right to life could be found by changing some of the terms. For example, say that Mr. Brown is not terminally ill, but unambiguously signs a form saying “if I can no longer feed myself and cannot ask (verbally or otherwise) to be helped, then let me starve.”

    Or assume that Mr. Brown attempts suicide, but leaves an unambiguously signed form stating that if he is found alive, no attempt shall be made to help him.

    Perhaps these cases are not the thrust intended by the post, but I find them just as interesting.

  4. diogenes
    March 22, 2005 at 12:07 pm

    I’ve really gotten quite weary of the incessant rants about “right to life” and “right to die” surrounding this general topic.

    I admit that I find many of the views and comments by Latter-Day Saints on this subject puzzling at best, maddening at worst. One would think that our knowledge of the spirit world, of the resurrection, and the plan of salvation would give us a radically different view on how to make this decision, than those views at large in the world.

    But most of what I hear, in this forum and at church, simply parrots the views of the World.

    Let me put the question this way: how do we know that our medical intervention on this side of the veil, on behalf of Terri Schaivo or someone else similarly situated, is not frustrating her progress or hampering the work of the Almighty? Could it be that we are holding her back from hearing the Gospel, taught among the dead as seen by Joseph F. Smith? How do we know that we are not preventing others in Spirit Prison from hearing her witness once she was among them? Or from engaging in the process of repentance and preparation that Alma suggests occurs prior to the resurrection?

    Death should not be a terrible or controversial matter for us. It is, like birth, simply a transition point in our progress. We’re taught not to take life lightly, for fear of cutting short someone’s probation and mission here in mortality. But I should think it would be equally true that we ought not to engage in prolonging life lightly, for fear of curtailing or interfering with someone’s work and mission in the spirit world.

    I hear very little discussion or thinking along these lines. It reminds me again, like a good many of the discussions here, how quickly Latter-Day Saints are to adopt one or the other of the false dichotomies offered by the World, instead of relying on our own unique knowledge to avoid the unproductive debates that have been framed by ignorance and apostasy. It’s frankly a little discouraging.

  5. Scott
    March 22, 2005 at 12:12 pm

    There are state laws that deal with this. In Texas, a 1999 law states that doctors in Texas, with the support of a hospital ethics committee, can overrule the wishes of family members and terminate life-support measures if they believe further care would be futile. A feeding tube on a 6-week infant was just pulled last week, over the objections of the parents. The Schiavo case was decided in the state courts, the question is why it is now a federal case?

  6. Wilfried
    March 22, 2005 at 12:27 pm

    Thank you, Kaimi, for the clear delineation of some issues at hand. As a “foreigner” I am intrigued by the U.S. political process behind the matter. And I wonder how much pure honesty and pure judgment can be brought up in this issue, which seems so directly tainted by other concerns. I just read Holly Mullen’s Schiavo case thick with hypocrisy in the Salt Lake Tribune. Is it at all possible to approach such cases without underlying other motives?

  7. Kaimi
    March 22, 2005 at 12:28 pm


    The other thread was specifically designed to address those questions. Instead of discussing those issues, the comments have turned into a political slugfest.


    I think it’s mostly a distinction without a difference. A right to die means that any right to life (if it exists) is revocable by the person who possesses that right. It’s typically framed by one side as “right to die” and the other side as “right to life.”

    My sense is that most people are taking an evidentiary position. I don’t think that many of the commenters on the other thread are actually irrevocable right to life advocates. I could be wrong. But I was hoping to weed through some of the arguments to figure out what people are actually believing on each side of this debate.

  8. Patricia Gunter Karamesines
    March 22, 2005 at 12:30 pm

    Kaimi attempts to demonstrate vigor and exactitude of language in his hypotheticals but do his hypotheticals leave two important terms with their arguable definitons implicit: vegetative state and unambigous consent? Unambiguous consent is not such a concern in Terry Schiavo’s case–she may or may not have left instructions; if so, they don’t qualify as “unambiguous”–but the debate over whether or not she is in a vegetative state remains contested, whether or not some doctors say her condition meets the definition under Florida State Law. Many doctors do not agree that her condition meets the legal definition.
    Furthermore, are all cases where the terms “vegetative state” is applied and mortal crisis (end of life issues) occur equal? Are the cases of an infant is born with a severe brain injury and declared to be in a vegetative state and an elderly woman in the final stages of terminal cancer rushed to the ER in crisis and facing the prospects of a vegetative state and a thirty-fortysomething brain-injured woman who needs assistance to receive nourishment necessarily the same, so that hypothetical conclusions cover them all?
    Just wondering.

    P. G. Karamesines

  9. Bill
    March 22, 2005 at 12:40 pm

    I answered no to both hypotheticals.

    Here’s news of interesting developments:

  10. Kaimi
    March 22, 2005 at 12:49 pm


    You’ve touched on the third interesting topical cluster. It really deserves a post all of its own.

    As I see it, there are at least three major areas where there is disagreement:

    1. Is there a right to life / right to die / right to death with dignity / etc? (Also, what consent is required, etc.)

    2. Is it the place of the Federal government to enforce any right? Of the State government? Of the judiciary? Of the legislature?

    3. The details: Is she really in a vegetative state (and what is that?)?, did she really say anything to her husband and/or parents?, is she really responding to people?,

    Each area is open to different interpretations, which is what makes the case so divisive.


    Your hypothetical is interesting and really pushes into the “right to die” area rather than simply a revocable right to life.

  11. John H
    March 22, 2005 at 12:50 pm


    The answer to both hypotheticals is unequivocally “no.” Mr. Smith and Mr. Jones have made their wishes abundantly clear. The question of “whose life is it anyway” ought to come into play. What possible right could anyone beyond him have to make that decision.

    If God believes the decision is wrong, we still shouldn’t force a man who has no control to live if he doesn’t want to. We don’t force people not to drink alcohol, not to have sex outside of marriage (though some religious types would love to try, I suppose), so why would we force someone to live when they’ve made it clear they don’t want to? How this decision is between anyone but the person and God is utterly beyond me.

  12. diogenes
    March 22, 2005 at 1:02 pm

    The other thread was specifically designed to address those questions. Instead of discussing those issues, the comments have turned into a political slugfest.

    That was a large part of my point, I think.

    But these hypos adopt the same framework.

  13. March 22, 2005 at 1:02 pm


    Given the dichotomy between the medical definition of Persistent Vegetative State and the popular conception of Persistent Vegetative State, we should ask which definition Mr. Smith (or Mrs. Schiavo) had in mind when they indicated what to do if they were ever to enter that state.

    I can imagine a situation where an individual who is not familiar with what medical professionals consider a “vegetative state” might leave instructions to withhold extraordinary intervention if he or she were ever to become a “vegetable” and have a completely different understanding of what they had agreed to than the medical professionals who would be making the determination.

    It seems likely to me that unless the individual explicitly indicates in their statement that they are familiar with and accept the medical definition of PVS we must assume that they meant the folk definition of “vegetable.”

  14. john fowles
    March 22, 2005 at 1:20 pm

    Hypo # 3: is it right to starve an animal to death?

    Hypo # 4: is it right to starve a convicted child murderer to death?

    If the answer to both of these is “no,” then how can we say “yes” to starving Terri to death?

  15. HL Rogers
    March 22, 2005 at 1:25 pm

    I guess it depends on how explicit the form is that the animal signed.

  16. Matt Evans
    March 22, 2005 at 1:33 pm

    John (Comment 14), Terri is being starved to death to preserve her dignity.

  17. john fowles
    March 22, 2005 at 1:37 pm

    oops, good point matt, sorry to have overlooked that. I know that human dignity is of paramount importance, particularly when it comes to convicts on death row.

  18. Kaimi
    March 22, 2005 at 1:41 pm

    John Fowles,

    You’re smart enough to know that you’re being deliberately obtuse.

  19. March 22, 2005 at 1:46 pm


    I stand by my post — rational arguments are officially out the window. IMHO we’d all be better off closing these threads before we make worse fools of ourselves than we already have.

  20. Geoff B
    March 22, 2005 at 1:48 pm

    Kaimi, the answer to both of your hypotheticals is No. The reason is that people do have a right to choose about their own lives, and in both cases the people involved have made a choice and signed forms to that effect. The real issue is: what do you do about other people deciding about your right to live or die? If Terry Schiavo had signed a form indicating this choice, there would be no controversy, in my opinion.

  21. john fowles
    March 22, 2005 at 1:49 pm

    Steve, are you saying that we are making fools of ourselves just because we don’t all agree that Terri should be starved to death? How are my hypos 3 and 4 any more contrived or strained than Kaimi’s hypos 1 and 2?

  22. March 22, 2005 at 2:05 pm

    Kaimi: “John, How can you be so obtuse?”

    John: “What?!? What did you call me?!?”

    Kaimi: “Obtuse. Is it deliberate? . . .

    John: “SOLITARY! A MONTH!”

    (Kaimi gets dragged away, kicking and screaming)

    Kaimi: “What’s the matter with you? This is my chance to get out, don’t you see that? It’s my life! Don’t you understand it’s my life?”

    Oh- that was a different setting… But the word “obtuse” always brings that scene back. Sorry for the threadjack… Back to the debate.

  23. Kaimi
    March 22, 2005 at 2:08 pm


    I’ve read enough intelligent commentary from you to believe that you _must_ know the answer to your question “How are my hypos 3 and 4 any more contrived or strained than Kaimi’s hypos 1 and 2?” I continue to believe that you are being deliberately obtuse.

    But, in case you actually don’t know:

    My hypotheticals are stylized in order to filter out extraneous information and answer some root questions. If we say “is there a right to life” or “is there a right to die” we end up with people harping about Mr. Schiavo’s girlfriend and bank account and whatnot. I wanted to filter out that noise to focus on a few specific questions. It’s a useful inquiry. Of course, it’s limited. One can’t say that either of my hypotheticals proves _anything_ about the Schiavo case, which is much more complex. The actual case involves at least three conceptual clusters, I’ve focused on one area, narrowly, here.

    Your hypos #3 and #4, by contrast, seem deliberately intended to create as apples-to-oranges of a comparison as possible. They seem designed to inflame rather than move any discussion forward.

    You seem to be suggesting in your hypotheticals a scenario where neither the animal nor the convict have consented to the behavior. As you must be aware, the argument in favor of removing the feeding tube was based on an argument that she previously consented to this. You may disagree with the evidence — which seems far from clear — but the removal of the tube is based on consent.

    Your hypotheticals are obfuscatory rather than trying to be illuminative. And your end question “how can we say yes to starving Terri to death” indicates that you have missed the point entirely. Namely, that it is impossible to take from any of these stylized hypotheticals any concrete answers about specific applications in the Schiavo case. There are too many different arguments to deal with.

    So, what’s the difference, you ask?

    I tried to craft some hypotheticals which focused on specific individual issues, and I didn’t and haven’t said that anything in my hypotheticals tell us how to decide the Schiavo case.

    You then threw out some inflammatory apples-to-oranges examples, and demanded to know why they didn’t on their face answer the question.

    That’s the difference.

    I know that you’re intelligent. Therefore, I can only assume that you’re being deliberately obtuse.

  24. March 22, 2005 at 2:08 pm

    John, that’s a silly reply. Have I said that Schiavo should be starved to death? Have I labelled your hypotheticals contrived or strained? Please.

    Rather, it is the emotional nature of your response — heated and rushed — that typifies what I am decrying.

  25. Kaimi
    March 22, 2005 at 2:12 pm


    That’s pretty funny.

  26. Milo
    March 22, 2005 at 2:19 pm

    Is there any scriptural support for the idea that people have a right to die when and where and how they want? I believe that the Church’s official position, as found in the Hnadbook, is that euthanasia is wrong. That would thwart many people’s decisions to die when and how they want.

    Someone mentioned that in keeping someone alive, we might be thwarting the Lord’s will, that He may want them in the spirit world, or whatever. Wouldn’t that argument apply to anytime anyone is sick at all? “Well, Mary had pneumonia but we didn’t want to thwart the Lord’s will since He may want her in the spirit world, so we didn’t take her to the hospital.”

    Despite Kaimi’s attempt to address the right to life and right to death questions from a Mormon/scriptural standpoint, I haven’t seen but one or two people come at these issues from such a standpoint. I’d like to see some scriptural support for the idea that it is right that people choose when and where they die, or that it is ok to die by one’s own hand.

  27. john fowles
    March 22, 2005 at 2:19 pm

    Well, you might be right. I’m being obtuse on this thread and John H. is being acute on the other. Sorry, just thought the pun could smooth over the problem. Plow forth with the debate. . . .

  28. Jeff Hoyt
    March 22, 2005 at 2:47 pm


    “Have I said that Schiavo should be starved to death?”

    Isn’t that your position? I guess I am confused about what you are saying. Also, I do not find John’s post “heated” or “rushed”. Perhaps it is the perspective we bring to our reading.

    Regarding the hypotheticals, I suspect everyone here would say no to both, which does not do much to create an interesting thread.

    Related points that come to mind are:
    1- Is food and water a medical treatment?
    2- The point brought up earlier about the disconnect between the medical definiton of PVS and the perception of people signing living wills.
    3- Can someone truly be giving informed consent about their reaction to a state of being for which they have no firsthand experience?

  29. March 22, 2005 at 2:50 pm

    Jeff, you’re off base, unfortunately.

  30. March 22, 2005 at 2:52 pm


    On the other hand, is there anything in the scriptures that obligates us to accept all forms of medical care? Do we have to submit to medical advances? Why should we have to go to the hospital if we have pnemonia? Why is there so much trust placed in doctors anyway, to begin with?

    I don’t think we will find any scriptural support for the idea that it is right that people choose when and where they die or that it is OK to die by one’s own hand. In fact, we probably would find injunctions against such. See, for example, a previous post entitled The Gospel, Suicide, and Death with Dignity, where I laid out these arguments a few weeks ago.

    But is refusing medical treatment the same thing as taking your own life? I don’t think it is. (For more discussion about this, see this post)

    To answer Kaimi’s questions:

    Hypo 1: No. The state should not intervene. Period. This is a family issue, and it’s not like the family would be saying “let’s kill Bob.” They would be removing life support and letting nature take its course. Maybe a miracle would happen. Maybe not. Either way, the wishes of the family to have their family member live or die naturally ought to be respected.

    You know, several jurisdictions actually take this approach, which is called “substituted judgment”- where the judgment of family members regarding end-of-life care is substituted for the judgment of the incapacitated individual. When an individual can’t make decisions and has not expressed what he/she would have done, who better to make that decision than the family (provided that it is unanimous, as Kaimi speculates).

    Hypo 2: A person has absolute automony over his/her body and whether or not to allow invasive medical procedures. As a matter of law in the United States, that was determined by a series of Supreme Court cases. As a matter of principle it seems right to say that if I don’t want something in my body, then I should be able to refuse it. As a matter of religious tradition, people in many judeo-Christian faiths (including mormons) have refused different medical treatments for various reasons, and did not seem prohibited to do so by scripture.

    I can’t think of anything in scripture which would forbid refusing medical care. For example, my wife can and has refused an epidural for childbirth. While this does not rise to the traumatic level of end-of-life care, I see no legal, ethical, or religious problem with her analagously refusing to be hooked to a ventilator, if it is her own personal choice.

    If you believe in a revocable right to life, executable by the ill person, but you also believe that medical care should be continued for Ms. Schiavo in particular, then you must believe that she simply has not executed a valid revocation of her right to life. That position is an evidentiary one, and is based on the lack of sufficient evidence to support a finding of revocation.

    Yes. That is my position exactly. And such a position does not, in my opinion, cheapen the sanctity of life somehow. It does not somehow align me with supporting physician-assisted suicide or euthanasia. It is merely the natural consequence of believing that each one of us has a right to refuse medical care, drugs, invasive procedures, etc., into our own bodies. I don’t know that this position is explicitly supported by scripture, but it is certainly not refuted. It does seem to be supported by anecdotal evidence of prominent Christians and Mormons having refused various forms of medical care.

  31. March 22, 2005 at 2:54 pm

    By the way, Jeff and others:

    I did not think this thread was specifically about Schiavo. Rather, I thought it was a forum to discuss the underlying issues.

    Jeff, if you believe that people can’t be allowed to refuse medical treatment, then does my wife have to submit to an unwanted epidural just because the doctor says so? It’s a rhetorical question, but we are discussing here underlying issues and the consequences of how we come out on those issues. My position does not mean that Terry dies- it means she lives! But I digress.

  32. Jeff Hoyt
    March 22, 2005 at 3:06 pm


    “Jeff, if you believe that people can’t be allowed to refuse medical treatment,”

    I do not believe that, and cannot figure out why you would think I did. Also, I was just responding to Steve re: Schiavo. My other points were on point, I believe.


    “Jeff, you’re off base, unfortunately.”

    Wow, that clears that up. Off base to just ask for a clarification of your position?

  33. Kaimi
    March 22, 2005 at 3:18 pm


    Puns are always welcome. And for someone so obtuse, you sure know how to come up with a-cute pun.

  34. Milo
    March 22, 2005 at 3:43 pm

    Thank you for addressing my questions. You said:”But is refusing medical treatment the same thing as taking your own life? I don’t think it is.”

    I don’t think it is either. If YOU are the one refusing it for yourself, though, it sure smells a lot better.

    I do think there is line, however, where refusing to do perfectly reasonable things to prolong life is wrong. I can’t say how wrong, if it a sin or just misguided, but I believe that line is what many people are concerned with in the Schiavo case, since they don’t view feeding as “medical treatment” or an invasive procedure or anything analagous to the various medical procedures that people have refused for religious reasons over the years, but a non-extraordinary measure which everyone (including those of us who do it for ourselves) needs to sustain life.

    And I agree with you that Congress getting involved was a bad idea.

  35. Todd Lundell
    March 22, 2005 at 3:44 pm


    While your post is very thoughtful, I don’t think your comparison between refusing pain-avoiding medical treatment and refusing life-sustaining treatment is very apt. As is often said with regard to capital punishment – death is different. Would you think it equally acceptable morally if a healthy woman refused an epidural knowing that she then had a 99% chance of death (absurd hypo, I know). Without regard to whether the state should be able to force a particular side of that choice, I think it would be morally irresponsible to refuse the treatment. Death is different. We can choose to accept a certain amount of pain (or in the case of an epidural, choose one type of pain over another), but I don’t think we can just outright choose to accept death.

    The church teaches that suicide is a condemnable act. This should lead us to believe that at least in some sense life is not simply revocable by choice. Of course, this hardly answers the more complicated questions regarding the terminally ill or someone who is a “vegetable.”

    I personally believe that determining when it may be justifiable to resist life-sustaining medical treatment involves a complex utilitarian calculus. The hypotheticals in P. G. Karamesines’s post show how it is nearly impossible to simply either believe in a revocable right to life or an irrevocable right to life. Even if you end up with the same conclusions with regard to each of those hypotheticals, the fact that some of them seem “harder” questions than others shows that there are many considerations that must be weighed in determining what you believe is the right answer. So to some extent, Kaimi, I think the object of your post fails. You simply cannot isolate put people into one or the other of the categories.

    I also think that answers with regard to whether a person has a moral right to resist life-sustaining medical treatment do not necessarily answer the question of how the state should go about enforcing such a right. That, for me, is an even harder question.

  36. March 22, 2005 at 3:47 pm

    For lots of enlightening (and non-partisan) legal discussion about Schiavo and end-of-life decision making, I suggest people visit the healthlawblog . It is accessible to non-lawyers and quite neutral in its approach, simply laying out the applicable arguments. One of the co-authors taught my health law and bioethics course- a very interesting class indeed! And it happened right around the time Jeb Bush was issuing unconstitutional (under Florida’s constitution) executive orders (and I don’t say this to be pithy- I am just deferring to what the Florida courts said about it) to stay removal of the feeding tube.

    Healthlawblog is always interesting.

  37. Nathan Mark Smith
    March 22, 2005 at 3:55 pm

    Steve says: “Rather, it is the emotional nature of your response – heated and rushed – that typifies what I am decrying.”

    With all due respect for your many and varied contributions to the bloggernacle: This comment is hard to take from a guy who recently responded to someone else’s apparently sincere comment with “bwah ha ha ha! Tell me you are kidding.” . (I’m not sure if the subsequent apology was directed at the original commenter or at readers). Is condescending and rushed all that much better than heated and rushed? I agree that the Schiavo discussion hasn’t been what it could be in terms of respect and focus, but I don’t think John (or Ivan) is particularly responsible for that.

    Kaimi: By “evidentiary” issues, do you just mean factual issues, as in what happened in this case? I’m thinking more along the lines of what types of evidence we allow as the basis for life and death decisions. I bet, for example, if we shifted the discussion to the types of evidence that should be allowed as the basis for capital convictions, you’d find some non-boring issues.

  38. March 22, 2005 at 3:56 pm


    Let’s say that you are a Jehovah’s Witness. You sincerely believe that if you receive a blood transfusion, you will not be able to enter heaven. You have a serious accident, and if you don’t have a blood transfusion you are going to die. You refuse the medical treatment. Do you really think the law should force you to receive blood? Should force the doctor to strap you down and perform that invasive procedure which in your mind condemns you to hell? I hope you would not go so far, but if so, then that is scary! We need to have personal autonomy in medical decision making, even in life or death situations. But for reasons laid out here, that personal autonomy does not extend, in my opinion, to areas where there is an affirmative taking of life (rather than a disconnect of machinery to allow nature to take its course)- such as in suicide or physician-assisted suicide.

    Maybe part of what makes this case so difficult is the fact that the disconnecting of the machinery (here, a feeding tube) means that she will (IS!!) surely starve to death. When you disconnect a respirator, at least there is a chance that a person might breathe again naturally, in most circumstances. So it seems more like an affirmative act ending life rather than simply a refusal of medical treatment.

  39. March 22, 2005 at 4:07 pm


    The thread was a nice try. Unfortunately, this entire issue is apparently one of those tarbabies you can’t touch even with a ten-foot pole.

  40. March 22, 2005 at 4:10 pm


    Why? What is wrong with a little healthy (and even emotional) discussion? It’s fun to engage in discussions like this one. It’s fun to see where other people are coming from. It’s fun to mock others for being uninformed and in turn be mocked. It’s a blog- that’s what it’s for.

    That said, I wouldn’t recommend doing this in Sunday School (which this isn’t). On the other hand, wouldn’t that be interesting to see who in the ward would get all fired up about things. (hatching evil plan…)

  41. Todd Lundell
    March 22, 2005 at 4:21 pm

    My post did not really concern the Schiavo case. I don’t really know enough about the facts of the case to make any particular comment. Besides, I like the hypotheticals better b/c it helps isolate the pressure points in the discussion.

    As for your Jehovah’s Witness example: I would not force a Jehovah’s Witness to accept medical treatment because I think the right to religious freedom weighs heavily against the state’s interference. It has nothing to do with whether I think the decision to refuse treatment in that circumstance is morally correct. I don’t think it is, because I think the Jehovah’s Witness has mistaken God’s commands. Nonetheless, I think the state should not interfere.

    In other words, your hypothetical adds a factor that makes a difference.

  42. Jim Richins
    March 22, 2005 at 4:23 pm


    DNS has resolved itself back to the original T&S server for me.

    And, the first topic I see is…

    Terry Schiavo.

    Oh joy.

  43. March 22, 2005 at 4:31 pm


    My post did not really concern the Schiavo case.

    Neither did mine. Except for one part where I suddenly had an insight that cases with feeding tubes generally (there are many of these each year, who knows why Schiavo gets all the attention..) might feel different because a person starves and has no hope of living without the tube, whereas in cases with respirators and other life-saving treatment, there may be more chance of survival sans medical interference.

    Jim- welcome to our world again.

  44. March 22, 2005 at 4:42 pm

    Nathan Mark Smith,

    I don’t know who you are, nor do I know how long it took you to dig up a suitably damaging comment of mine from two months ago, but a greater waste of time is difficult to imagine. I must’ve really stuck in your craw for you to go to such lengths. The fact that I apologized for the roughness of that prior remark is tough to explain, isn’t it? Even better: you spent all that time to violate the T&S comment policies to insult me, and between us? Not very well-executed.

    As for labelling me as condescending and rushed, you’re half-right.

    Jeff Hoyt: Sorry for not taking more time earlier to reply. Let me clarify by referring to your comment:

    “Isn’t that your position? I guess I am confused about what you are saying.” No, that’s not my position. I have not taken a position on the Schiavo case, except to say that it is an awful, awful case that is resulting in bad laws and bad behavior all around.

    “I do not find John’s post “heated” or “rushed”. Perhaps it is the perspective we bring to our reading. You could be right. However, based upon past experience with John, I can safely say that he is a thoughtful person whose emotions get the best of him at times. John can back up my assessment, if he chooses; he knows that I respect this thoughts, even if feelings can get in the way.

  45. Nathan Mark Smith
    March 22, 2005 at 5:31 pm

    Steve – actually, I remembered that off the top of my head and googled it. When I first started paying attention to the bloggernacle, I was impressed with the tactful way you managed some heavy discussion on Grant Palmer over at BCC, so when I came across your response to that poster, it surprised me and stuck in my memory (I didn’t feel that the e-laughter apology repaired the damage). Some of your comments today reminded me of that. My comment wasn’t meant as an insult, and I actually expected a witty rather than an angry response. Maybe my comment would have gone over better if it came from a regular or a permablogger, as you seem to be bothered by the fact that you don’t know who I am. In any case, please feel free to send me an email if you are still bothered by my comment — You’re right that this thread has drifted off topic, and I concede that my comment was part of the drift.

  46. Nathan Mark Smith
    March 22, 2005 at 5:34 pm

    whoops. [email protected]

  47. March 22, 2005 at 5:41 pm

    NMS, sometimes my wit runs thin. Sorry for the hostility. One more reason why we should leave this topic alone (especially myself).

  48. Kaimi
    March 22, 2005 at 6:11 pm

    Since this thread has evolved to cover quite a bit more about legal aspects of the case, I’ll note that I just noticed a law blog discussing the case. It has an extensive timeline and discussion of the legal history. It’s at .

    According to that blog — and I don’t know myself whether this legal analysis is good or not, but it sounds plausible and if true, interesting — Michael Schiavo does not have the authority to decide one way or the other. Rather, the trial court is making the decisions, based on testimony from different parties including Michael Schiavo. To quote:

    Michael Schiavo did not make the decision to discontinue life-prolonging measures for Terri.

    As Terri’s husband, Michael has been her guardian and her surrogate decision-maker. By 1998, though — eight years after the trauma that produced Terri’s situation — Michael and Terri’s parents disagreed over the proper course for her.

    Rather than make the decision himself, Michael followed a procedure permitted by Florida courts by which a surrogate such as Michael can petition a court, asking the court to act as the ward’s surrogate and determine what the ward would decide to do. Michael did this, and based on statements Terri made to him and others, he took the position that Terri would not wish to continue life-prolonging measures. The Schindlers took the position that Terri would continue life-prolonging measures. Under this procedure, the trial court becomes the surrogate decision-maker, and that is what happened in this case.

    The trial court in this case held a trial on the dispute. Both sides were given opportunities to present their views and the evidence supporting those views. Afterwards, the trial court determined that, even applying the “clear and convincing evidence” standard — the highest burden of proof used in civil cases — the evidence showed that Terri would not wish to continue life-prolonging measures.

  49. lyle
    March 22, 2005 at 6:24 pm


    Isn’t the real question where Terri’s soul is? And whether it needs to be freed from a mortal prison or helped to adapt to its ‘new’ (yet damaged) mortal body?

    Sorry, I didn’t package it neatly in a generic hypothetical…but at least to me, that is the crux of the “LDS” doctrinal question in play here.

  50. lyle
    March 22, 2005 at 7:00 pm

    Kaimi: Thanks for the helpful information re: Courts making the decision to kill Terri/honor her purportedly orally related living will.

    So…what is the big deal? Courts have already decided that Courts (i.e. the State) has the power to end life. If folks really were upset about this concept, whether a state or national legal issue, laws/amendments are in order…not a feeding frenzy [no pun intended].

  51. March 22, 2005 at 7:19 pm


    > If you believe in a revocable right to life, executable by the ill person, but you also believe
    > that medical care should be continued for Ms. Schiavo in particular, then you must believe
    > that she simply has not executed a valid revocation of her right to life. That position is an
    > evidentiary one, and is based on the lack of sufficient evidence to support a finding of
    > revocation.

    I’m pretty sure I figured out the way you lean on the Schiavo case by the bias in that paragraph. You did a good job of trying to be fair with the information you presented in your hypotheticals and the subsequent explanation, but as is often the case with media bias, you left out important information. For the same reason, the much-publicized poll that Americans disagree with what Congress has done in the Schiavo case is biased.

    As Jonathan Max Wilson pointed out, you left out another evidentiary question: whether Terri Schiavo is actually in a persistent vegetative state. By assuming that she is, despite the fact that her parents claim she reacts to visual and auditory stimuli — which is inconsistent with PVS — ABC News is biasing its poll and you are biasing your explanation.

    So, contrary to what you assert I must believe if I answered No to both hypotheticals, which I did, it is perfectly plausible for me to believe that Terri Schiavo should not be starved to death while there are still doubts about whether she actually is in a persistent vegetative state. For me, that is the key evidentiary point. While I personally have some doubts about whether Terri Schiavo really said what Michael Schiavo claims, it’s possible she did and there is no way additional hearings can prove otherwise, short of Perry Mason getting him to confess that he lied. But I want a new examination of whether the PVS diagnosis really is correct, because there certainly seems to be good evidence to the contrary.

    There’s also the fact that both your hypotheticals were about terminally ill people, which is not true in Terri Schiavo’s case. So one might believe in the right of terminally ill people to allow their illness to run its course without medical intervention, while still opposing death by starvation for someone not terminally ill.

  52. Kaimi
    March 22, 2005 at 7:28 pm


    You’re right, that’s a factual consideration that I inadvertently omitted in my formulation. It should more accurately read:

    If you believe in a revocable right to life, executable by the ill person, but you also believe that medical care should be continued for Ms. Schiavo in particular, then you must believe either (1) that she is not truly in a vegetative state, or (2) that she simply has not executed a valid revocation of her right to life. Both of these positions are evidentiary ones.

    As for my own opinion, I really don’t have one. I’m a double-no person myself on the hypotheticals (right to life revocable, executable by the ill person) and I’m aware that any further move from that ambiguity would require the acquisition of factual knowledge that I just don’t have at this point, and I don’t really want to spend the time obtaining.

  53. Kaimi
    March 22, 2005 at 7:35 pm

    By the way, the correction still preserves the distinction I was trying to make. That is, I think that there are three major conceptual clusters at issue in the case.

    First, there are interesting philosophical questions about rights to life; however, I think that most observers, on both sides (with the exception of some Catholics, probably) are in the revocable-right, executable-by-the-ill-person camp.

    Second, there are governmental authority questions. These are a whole ‘nother ball of wax. I’ve deliberately excluded them in my analysis here. Steve Evans is harping on them over at BCC.

    Third are the messy evidentiary questions. Is she really in a PVS? (What is that?) Did she really consent? (How?) And so forth.

    Despite all of the fuss, it strikes me that most of the disagreement seems to focus on the third cluster. If it’s true, then (surprisingly) this isn’t a grand principles case after all about rights to life and all that, but case-specific fight based on a basic disagreement over a few key facts. Which conclusion I find somewhat counterintuitive, based on the attention that the case is receiving.

  54. Marc D.
    March 23, 2005 at 12:54 am

    I did not read all the comments but I saw some remarks about starving this good woman to death. As I see it they are not starving her to death but not forcing her to be fed.
    Now she has the choice to eat or not. You can of course say she has not be how do you now?

  55. Marc D.
    March 23, 2005 at 12:55 am

    That should have been of course: How do you know?

  56. March 23, 2005 at 2:50 am

    > Despite all of the fuss, it strikes me that most of the disagreement seems to focus on the
    > third cluster. If it’s true, then (surprisingly) this isn’t a grand principles case after all about
    > rights to life and all that, but case-specific fight based on a basic disagreement over a few
    > key facts. Which conclusion I find somewhat counterintuitive, based on the attention that
    > the case is receiving.

    I think you’re right about this — which is why so many Democrats in the Senate were able to go along with a private bill limited to this specific case. Even if you believe in a revocable right to life (a wording which I don’t like, for reasons I’ll explain below), there are indications that in this particular case, something is wrong. It’s similar to a situation in which someone who supports the death penalty in general thinks there’s something wrong in a particular case against a particular person (such as newly discovered exculpatory evidence), and supports additional investigation to ensure the death penalty is not applied to someone improperly.

    The reason I don’t like the wording “revocable right to life” is that it seems too broad. I prefer something that doesn’t imply a right to euthanasia or suicide, such as “right to refuse life-prolonging medical care.”

  57. Todd Lundell
    March 23, 2005 at 10:12 am

    I have been thinking about Jordan’s comment regarding the distinction between “affirmatively taking life” and simply refusing medical care. I think he is absolutely right about the Schiavo case being much closer to affirmatively taking life than simply refusing medical care. For me, I am not sure it changes the way I feel about the decision itself, but it does make me think that we ought to think twice about the method of taking this woman’s life. In the Schiavo case, where the person herself is not the one refusing the medical care (and I think that is key), it seems rather inhumane to simply deny her food and water until she inevitably dies. Is anyone else bothered by this? It seems that if we are going to make the decision to end someone’s life – putting aside the complex issues of whether the decision to do so is correct – we ought to be confident enough in our decisions to do it in a humane way. We would never deny food to a starving animal in order to let “nature” take its inevitable course, so why should we do it with human life?

    Am I wrong to be troubled by this? If we are going to allow her to die, I would almost be less troubled by a decision to euthanize her. Perhaps this was discussed and I just missed it (I haven’t been able to read on the comments on this or the other thread).

  58. Kaimi
    March 23, 2005 at 10:52 am

    /Begin legal rant.

    I just read the latest CNN story. . Ms. Schiavo’s parents asked for a TRO in Federal Court, and it was denied. At which point, we get this quote:

    Bobby Schindler, Terri Schiavo’s brother, said his family was “just shocked” at the decision. “I don’t understand how the judge can predetermine our success,” he said, adding that his family remained hopeful.

    That quote reflects a massive ignorance of what a TRO is. To get a TRO, you _have_ to show a likelihood of success on the merits. This isn’t a Schiavo-specific rule, this is black-letter, very basic civil procedure.

    If you don’t want a judge predetermining your likelihood of success on the merits, then _don’t ask for a TRO_. If you ask for a TRO, you’re _going_ to get a ruling on likelihood of success on the merits. That’s basic, basic legal procedure. My goodness.

    /end legal rant.

  59. March 23, 2005 at 10:59 am

    The Eleventh Circuit Court’s opinion is posted here:

    And, following up on Kaimi’s legal rant, and also quoting directly from the apellate court’s opinion discusing the principal theme of the plaintiffs’ argument that the law Congress enacted required that injunctive relief be granted:

    ” Pub. L. No. 109-3 is an extraordinary piece of legislation, and it does many things. Defendants contend that the legislation is so extraordinary that it is unconstitutional in several respects. We need not decide that question (citations omitted) . . . It is enough for present purposes that in enacting Pub. L. No 109-3 Congress did not alter for purposes of this case the long-standing general law governing whether temproary restraining orders or preliminary injunctions should be issued by federal courts.

    There is no provision in Pub. L. No. 109-3 addressing whether or under what conditions the district court should grant temproary or preliminary relief in this case. There is no more reason in the text of the Act to read in any special rule about temporary or preliminary relief than there would be to read in a special rule about deciding the case before trial on Fed.R.Civ.P. 12(b)(6) or summary judgment grounds.

    Not only that, but Congress considered and specifically rejected provisions that would have mandated, or permitted with favorable implications, the grant of the pretrial stay.”

  60. March 23, 2005 at 11:10 am

    re: #58

    Sheesh- aren’t their attorneys explaining anything to them?

  61. March 23, 2005 at 11:16 am


    My problem with your set of hypotheticals is that it is limited to a very specific medical condition and doesn’t address the moral/spiritual issues associated with life/death situations. You’ve made your position concerning the two hypotheticals you proposed clear and I have a few questions that have yet to be raised (to my surprise) by anyone else. I pose these questions directly to Kaimi but all are welcome to comment.

    1. What sypmptoms/conditions concerning a PVS do you find to justify terminating the provision of life-sustaining nutrients?

    2. What is your opinion concerning the body-spirit relationship under this condition?

    3. Would your opinion change if you were able to look into a crystal ball and find out that indeed your spirit continued to will for a corporeal body?

    I hope the thread is not dead because I still think the real doctrinal issue has not been addressed completely.

  62. john fowles
    March 23, 2005 at 12:00 pm

    Heather had some really insightful points on the particular case (which also go to this more generalized discussion) over in comment # 60 on the Millennial Star thread.

    Part of that comment was her observation # 4:

    #4 Most medical doctors will tell you that smiling, tears, and other “reactions” Terri is having are related to reflexes and not consiousness. Everything above the lower brain functions for Terri are completely mush.

    ue, then it reveals how the superficial appearance of something (i.e. it appears that she is not in a PVS) can cause problems with theoretical analyses.

    Much of what Jordan has written on this thread is extremely enlightening on Kaimi’s abstract hypos. I agree with those points, despite my observation that there seems to be an inconsistency here in that the death penalty is bad because death is so permanent but Terry can be starved to death on a standard of less than the criminal “beyond a reasonable doubt.” But this harks back to “evidentiary” questions (by which he meant factual questions) which Kaimi wanted to avoid because they relate strictly to this case. NMS, however, has a good point that although specific factual issues dealing with this case can muddy the waters for the generalized abstract questions Kaimi is posing, a discussion of evidentiary standards as opposed to specific factual questions, is a legitimate part of this discussion, when it comes to a court making the decision for the person about whether they live or die.

  63. March 23, 2005 at 12:18 pm


    Re: inconsistency with the death penalty- I don’t see it.

    In a case like this, we are talking about respecting the wishes of the person who is to be refused nedical treatment VOLUNTARILY. Hopefully such a person will have left a clear directive, but where they haven’t it doesn’t seem to make sense to require an evidentiary burden of “beyond a reasonable doubt.” Often the people who are involved in meeting that burden are loving family members, and often they agree. If all of the family members agree that the patient would have not wanted to continue being treated, but they can’t produce enough evidence to meet a “beyond a reasonable doubt” standard, the results serve nobody. The patient does not retain autonomy despite having told his/her family that he/she would refuse medical care. The family does not get closure. And someone has to keep paying bills. The point is that we don’t want such a high burden of proof directed against the individual’s etstate who expressed a desire to not continue receiving medical treatment. Clear and convincing evidence seems high enough a burden to protect the individual as well as granting the desire of the person whose life is at stake as voiced through his/her family. (Assuming of course, that the jurisdiction will only allow evidence of what the person would have wanted. Some jurisdictions will allow for the “substituted judgment” of the court or the family, but not many.)

    In a death penalty case, however, we are talking about the state depriving an unwilling convict of his/her life. There are no concerns there for personal autonomy, and we want the burden of proof against the state to be as high as possible as a procedural safeguard.

    I see no inconsistency whatsoever between the two positions, as there are much different policy considerations underlying each.

  64. Nathan Mark Smith
    March 23, 2005 at 1:54 pm

    Jordan: “If all of the family members agree that the patient would have not wanted to continue being treated, but they can’t produce enough evidence to meet a “beyond a reasonable doubt” standard, the results serve nobody.”

    OK make up a new standard. Why not: don’t kill someone on the grounds she wants it unless (1) written proof; (2) unanimity among family of one degree of separation; or (3) otherwise BRD. Tweak it if you want.

    “The point is that we don’t want such a high burden of proof directed against the individual’s etstate who expressed a desire to not continue receiving medical treatment.”

    Isn’t this jumping ahead too far? From the court’s perspective, the standard of proof only matters
    at the earlier stage when we decide *whether* she expressed a desire to discontinue. Or are you saying that false negatives are worse than false positives when it comes to desire to die?

  65. March 23, 2005 at 2:10 pm

    don’t kill someone on the grounds she wants it unless

    Nathan, I think this is a gross overstatement of what is going on here. We are not talking about affirmatively “killing” someone “on the grounds she wants it.” We are not talking about honoring some “desire to die.”

    We (at least I am) are only talking about a person’s right to refuse medical treatment which may or may not result in death. To honor that right I do think the courts should impose a lower burden. I would not want my family to be faced with an impossibly high evidentiary burden when they seek to carry out my wishes. And it does not only matter at the early stages of the court proceedings, the standard of proof is DETERMINATIVE throughout.

  66. Nathan Mark Smith
    March 23, 2005 at 3:10 pm

    Jordan – just trying to be brief. I don’t have firm opinions about this. You can substitute your formulation before my conditions.

    I’m still curious: why doesn’t my standard solve your family’s problems? Nobody is advocating “impossibly high.” Do you think BRD is impossibly high? The judge I work for hasn’t seen a single jury acquit in his 3 years on the federal bench. Plus, BRD has “reasonable” built into it. Anyone who interprets it to mean impossibly high has it wrong, right?

    I’m not sure what you mean by standards of proof being determinative throughout. Maybe we’re talking past each other there. I’m saying you were assuming that she wanted [feeding tube out] when that is exactly the issue under dispute. I’m looking at it from the court’s perspective, and the court simply does not know whether she expressed that desire or not, and cannot decide (step 2)until after an evidentiary standard is picked (step 1). You did step 2 first, but I can see where you are coming from. You’re worried about the problem from the family’s perspective, assuming she has expressed the relevant wish.

    PS have you started work yet? If so, say hi to Victor Boutros for me.

    Kaimi – if you want to kill the evidence discussion, just say the word. I know we’ve digressed.

  67. Nathan Mark Smith
    March 23, 2005 at 3:14 pm

    correction: there have been some partial acquittals. [and I can see a comment about jury competence maybe coming – let’s bracket that] The point is, BRD means hard, not impossible.

  68. Nathan Mark Smith
    March 23, 2005 at 11:46 pm

    Oh. Um, don’t worry folks. I’ll get the lights on my way out . . .

  69. Kaimi
    March 24, 2005 at 4:00 pm

    For those interested in further discussion of the legal aspects of the case, I’ll note that a very interesting discussion is going on between Orin Kerr and Hugh Hewitt.

    See , , and related posts.

    For my money, Kerr is winning decisively, mostly because Hewitt seems vastly overmatched in the legal areas into which he keeps venturing. The latest exchange has gone along these lines:

    Hewitt: Wasn’t it Congress’s intent to restore the tube?
    Kerr: Congress’s intent doesn’t matter. You look at the text of the law. That’s exactly what the court did.

    Point: Kerr.

    Kerr: But tell me, do you think that the family has a likelihood of winning on the merits? [Note – that is the black-letter-law requirement for prevailing on a restraining order].
    Hewitt: I don’t think that they should have had to show that. And there’s probably some novel 14th amendment claim they could have made.

    Point: Kerr.

  70. Kaimi
    March 24, 2005 at 4:03 pm

    (So far, that is, Hewitt’s approach would involve scrapping textualism, scrapping statutory interpretation as we know it, creating new 14th amendment rights out of whole cloth, and scrapping rock-solid civil procedure rules about preliminary relief.

    Any theory of relief that requires overturning massive segments of jurisprudence is probably not a winner, in my opinion.)

  71. Todd Lundell
    March 24, 2005 at 7:21 pm

    To be fair, there is a lot of case law out there that analyzis preliminary injunctions as a balancing test: balancing the likelihood of success on the merits with the potential damage if no injunction is granted. Courts will often grant injunctions under this test with either a showing of high likelihood of success and some injury or showing some likelihood of success and substantial injury. I can’t think of any greater injury than the death of the subject. So, you wouldn’t think the family would have to make a very strong showing regarding likelihood of success. In essence they should just be able to show that they will raise a “substantial question” on the merits. I admit that I haven’t followed the legal issues very closely, so perhaps the family cannot even muster that.

    Still, I agree that Kerr is winning this debate handily. Having studied statutory interpretation together, you know that I don’t look fondly upon arguments that scrap textualism. : )

  72. A. Greenwood
    March 24, 2005 at 7:54 pm

    Someone or other at the Corner on the NRO says that Hewitt’s position is a lot more sympathetic if you realize that the 2-judge majority opinion on the 11th Circuit relied heavily on a different bit of ‘legislative history’ in reaching their result.

  73. Nathan Mark Smith
    March 25, 2005 at 10:58 am

    Looks like this thread has some life after all.

    Todd: I had the same thought. Here’s Judge Posner’s formulation of the rule.
    “[party seeking injunction] must show that it has more than a negligible chance of success on the merits, and no adequate legal remedy. Once this is established, the district court must then consider the balance of hardships between the plaintiffs and the defendants, adjusting the hardships for the probability of success on the merits.” 162 F.3d 463, 473

    That said, I read the TRO from Tuesday and it looks like they would have lost under this standard, too.

  74. Nathan Mark Smith
    March 25, 2005 at 10:59 am

    i.e. I read the order denying TRO

  75. P. G. Karamesines
    March 26, 2005 at 11:37 am

    Orson Scott Card, who had a handicapped son, has made a statement on the Terry Schiavo case:

  76. Sheri Lynn
    March 26, 2005 at 12:37 pm

    –If only Terry Schiavo had been convicted of some crime. Then the governor could stay her execution. –Orson Scott Card


    Tomorrow our children will come home from church with treats, and there will be more treats in their Easter baskets, and we can watch them peel eggs, open little foil-wrapped chocolates, bite the ears off of rabbits…

    …but they couldn’t even put a sponge full of vinegar to Terri’s lips as she was dying. A nurse has sworn that she was able to swallow jello…but they’d arrest anyone who tried to give her an ice chip.

    I hate it that I’m unable to go stand up with the Schindlers and bear witness to the murder being done. I should be there. I should be standing up to this incredibly evil thing being done not by some Saddam or Hitler in another land, but by the law of MY country.

  77. P. G. Karamesines
    March 26, 2005 at 1:34 pm

    Yes, and soon I’m going to sit down with my extensively handicapped daughter who ten years ago lost her swallowing reflex and feed her by mouth 10-15 liquid ounces of a special formula my husband developed, a sacred ritual we perform three times a day. While I feed her I’ll watch and listen with her to satellite TV music channels (doctors thought she was blind and deaf), and when she finds a song uninteresting she’ll say, “Off,” meaning she wants me to switch to another channel (Simon and Garfunkel always get “Offed” within a few seconds of her hearing one of their songs). When she indicates she’s eaten enough, we’ll engage in another ritual, the e-sheep (desktop pet) cheer, and she’ll smile a smile so uninhibited and breathtaking we wonder how she does it. She wouldn’t smile for the doctors–they terrified her–so they never saw her smile and doubted she could do it. If they had seen her smile, there’s a fair chance they would have discounted it.

    It will take me a lifetime to get at the meaning of my daughter’s life. The church considers her “not accountable” but I have always treated her as a free agent, able to make her own decisons, on the grounds that only through exercising free will would her intelligence increase. Sometimes we have had to wait years for her to make certain decisions about how far she would come out into the world, but make decisions she has, rising steadily towards us. Now she’s a music critic! The myth of Orpheus and Euridice pales in comparison.

  78. Todd Lundell
    March 26, 2005 at 2:12 pm

    On the legal issues again, a state judge rejected a petition that alleged Terri had tried to communicate that she wanted to live. The judge held that the parents “waived their right to raise Terri Schiavo’s alleged verbalization when they failed to present the affidavits at the March, 23, 2005, hearing.” In other words, they should have filed these claims three days ago, but did not, so they are out of luck.

    Perhaps the parents are just trying to stall and the fact that they didn’t raise this allegation a few days ago probably discredits their claim. But it seems like an awfully bad time for a court to be resting its holding on “waiver” grounds! I understand the need for closure, especially in a case like this. Still, if the parents’ allegations were actually credible, it would be hard to believe justice was done.

  79. Sheri Lynn
    March 26, 2005 at 8:06 pm

    Pardon an off-topic comment, please. Sister Karamesines, my husband was baptized by Elder Karamesines while we were stationed in Germany. By chance is he your father? We lost track of them during one of our moves; apparently they moved at the same time.

    My son is high-functioning autistic, high-functioning enough that we are aware that what others perceive as a disability can actually be a great gift. There are sins that will never tempt him, sorrow he will never know. He is the happiest 13 year old I’ve ever met, and has less adolescent angst than the norm. He accomplishes marvelous things because we disregarded the ignorant neurologist who told us, well, lots of horrible, untrue things. Advising us to have him institutionalized. Telling us he’d never be able to make friends or have a meaningful conversation with anyone. :sigh:

    He may never decide he’s ready to hold the priesthood, and perhaps he didn’t need to be baptized. (He was baptized at ten, as we wanted to be sure he understood what it meant first.) He may never fall in love, may never marry. We can’t know.

    But we’re glad he’s here. I know of other parents whose autistic children are far more profoundly affected. One child must be restrained from hurting himself at all times. He will break and eat glass if given a chance, will tear at his own face. He hardly ever sleeps, and must be confined to an attic room upholstered all over so that he cannot easily hurt himself at night while his parents sleep. From the outside it looks like a dreadful life, horribly stressful. Taking care of a grown person who is disabled is NO easy task. Nursing home care is not always humane, either.

    I think I see the disabled as “my” people. My son and I are part of a community that by and large is too busy caretaking to spend much time lobbying and advocating for ourselves. We spend what energy we have fighting doctors and IEPs. The Schindlers have been working for their daughter’s most fundamental human right, the right to life, and we share their heartbreak. What has been done to Terri, “the least of these,” is done unto our Savior as well, and we know it. And those of us who have chosen to take on His name and follow Him–we share these stripes.

    Here is an eloquent summary of the facts, written by a lawyer and advocate for the disabled, who knows she may herself face a future not unlike Terri’s–deprivation of speech and voluntary movement, even the ability to swallow and feed herself:

    Not Dead at All
    Why Congress was right to stick up for Terri Schiavo.
    By Harriet McBryde Johnson
    Posted Wednesday, March 23, 05, at 4:50 AM PT

    The Terri Schiavo case is hard to write about, hard to think about.
    Those films are hard to look at. I see that face, maybe smiling, maybe
    not, and I am reminded of a young woman I knew as a child, lying on a
    couch, brain-damaged, apparently unresponsive, and deeply
    beloved-freakishly perhaps but genuinely so-living proof of one family’s
    no-matter-what commitment. I watch nourishment flowing into a slim tube
    that runs through a neat, round, surgically created orifice in Ms.
    Schiavo’s abdomen, and I’m almost envious. What effortless intake! Due
    to a congenital neuromuscular disease, I am having trouble swallowing,
    and it’s a constant struggle to get by mouth the calories my skinny body
    needs. For whatever reason, I’m still trying, but I know a tube is in my
    future. So, possibly, is speechlessness. That’s a scary thought. If I
    couldn’t speak for myself, would I want to die? If I become
    uncommunicative, a passive object of other people’s care, should I hope
    my brain goes soft and leaves me in peace?
    My emotional response is powerful, but at bottom it’s not important.
    It’s no more important than anyone else’s, not what matters. The things
    that ought to matter have become obscured in our communal clash of gut
    reactions. Here are 10 of them:

    1. Ms. Schiavo is not terminally ill. She has lived in her current
    condition for 15 years. This is not about end-of-life decision-making.
    The question is whether she should be killed by starvation and

    2. Ms. Schiavo is not dependent on life support. Her lungs, kidneys,
    heart, and digestive systems work fine. Just as she uses a wheelchair
    for mobility, she uses a tube for eating and drinking. Feeding Ms.
    Schiavo is not difficult, painful, or in any way heroic. Feeding tubes
    are a very simple piece of adaptive equipment, and the fact that Ms.
    Schiavo eats through a tube should have nothing to do with whether she
    should live or die.

    3. This is not a case about a patient’s right to refuse treatment. I
    don’t see eating and drinking as “treatment,” but even if they are,
    everyone agrees that Ms. Schiavo is presently incapable of articulating
    a decision to refuse treatment. The question is who should make the
    decision for her, and whether that substitute decision-maker should be
    authorized to kill her by starvation and dehydration.

    4. There is a genuine dispute as to Ms. Schiavo’s awareness and
    consciousness. But if we assume that those who would authorize her death
    are correct, Ms. Schiavo is completely unaware of her situation and
    therefore incapable of suffering physically or emotionally. Her death
    thus can’t be justified for relieving her suffering.

    5. There is a genuine dispute as to what Ms. Schiavo believed and
    expressed about life with severe disability before she herself became
    incapacitated; certainly, she never stated her preferences in an advance
    directive like a living will. If we assume that Ms. Schiavo is aware and
    conscious, it is possible that, like most people who live with severe
    disability for as long as she has, she has abandoned her preconceived
    fears of the life she is now living. We have no idea whether she wishes
    to be bound by things she might have said when she was living a very
    different life. If we assume she is unaware and unconscious, we can’t
    justify her death as her preference. She has no preference.

    6. Ms. Schiavo, like all people, incapacitated or not, has a federal
    constitutional right not to be deprived of her life without due process
    of law.

    7. In addition to the rights all people enjoy, Ms. Schiavo has a
    statutory right under the Americans With Disabilities Act not to be
    treated differently because of her disability. Obviously, Florida law
    would not allow a husband to kill a nondisabled wife by starvation and
    dehydration; killing is not ordinarily considered a private family
    concern or a matter of choice. It is Ms. Schiavo’s disability that makes
    her killing different in the eyes of the Florida courts. Because the
    state is overtly drawing lines based on disability, it has the burden
    under the ADA of justifying those lines.

    8. In other contexts, federal courts are available to make sure state
    courts respect federally protected rights. This review is critical not
    only to the parties directly involved, but to the integrity of our legal
    system. Although review will very often be a futile last-ditch effort-as
    with most death-penalty habeas petitions-federalism requires that the
    federal government, not the states, have the last word. When the issue
    is the scope of a guardian’s authority, it is necessary to allow other
    people, in this case other family members, standing to file a legal

    9. The whole society has a stake in making sure state courts are not
    tainted by prejudices, myths, and unfounded fears-like the unthinking
    horror in mainstream society that transforms feeding tubes into fetish
    objects, emblematic of broader, deeper fears of disability that
    sometimes slide from fear to disgust and from disgust to hatred. While
    we should not assume that disability prejudice tainted the Florida
    courts, we cannot reasonably assume that it did not.

    10. Despite the unseemly Palm Sunday pontificating in Congress, the
    legislation enabling Ms. Schiavo’s parents to sue did not take sides in
    the so-called culture wars. It did not dictate that Ms. Schiavo be fed.
    It simply created a procedure whereby the federal courts could decide
    whether Ms. Schiavo’s federally protected rights have been violated.

    In the Senate, a key supporter of a federal remedy was Iowa Sen. Tom
    Harkin, a progressive Democrat and longtime friend of labor and civil
    rights, including disability rights. Harkin told reporters, “There are a
    lot of people in the shadows, all over this country, who are
    incapacitated because of a disability, and many times there is no one to
    speak for them, and it is hard to determine what their wishes really are
    or were. So I think there ought to be a broader type of a proceeding
    that would apply to people in similar circumstances who are

    I hope against hope that I will never be one of those people in the
    shadows, that I will always, one way or another, be able to make my
    wishes known. I hope that I will not outlive my usefulness or my
    capacity (at least occasionally) to amuse the people around me. But if
    it happens otherwise, I hope whoever is appointed to speak for me will
    be subject to legal constraints. Even if my guardian thinks I’d be
    better off dead-even if I think so myself-I hope to live and die in a
    world that recognizes that killing, even of people with the most severe
    disabilities, is a matter of more than private concern.

    Clearly, Congress’s Palm Sunday legislation was not the “broader type of
    proceeding” Harkin and I want. It does not define when and how federal
    court review will be available to all of those in the shadows, but
    rather provides a procedure for one case only. To create a general
    system of review, applicable whenever life-and-death decisions intersect
    with disability rights, will require a reasoned, informed debate unlike
    what we’ve had until now. It will take time. But in the Schiavo case,
    time is running out.

    Harriet McBryde Johnson is a disability-rights lawyer in Charleston,
    S.C. Her memoir in stories, Too Late to Die Young: Nearly True Tales
    from a Life, will be released in April.

  80. P. G. Karamesines
    March 30, 2005 at 10:30 pm

    Todd Lundell’s comment, #76: Note to self–if ever my disabled daughter’s wellbeing becomes a legal matter, pay at least as much attention to court dates as if I were trying to retrieve an impounded vehicle.

    I wonder how long it be before people like the Schindlers can argue for prolonging lives of offspring based on proprietary genetic concerns (pharmaceutical companies are out there patenting genes left and right)?

    Sheri Lynn–Small world! Those would be my in-laws you’re asking about. They moved to CA late last year. If you want to know more or get in touch with them, you’re welcome to email [email protected] (my husband, their son).

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