posted
I'm floored, actually. As long as I've been doing my political advocacy work, this is my first stab at writing an op-ed. I wrote it Sunday and it was submitted yesterday via a colleague with some contacts at the LA Times.
What my colleague did was to sell the editorial staff on the timeliness of my op-ed and an important perspective generally missing in a story that's been covered a lot over the past couple of weeks.
None of this would have done any good if they hadn't thought the submission was a workable text, of course. Turns out they liked it. Not as is - there were several changes negotiated today. I think most of them were an improvement over the original.
I'll post the link to the article tomorrow morning. Not even sure if they'll stick with my original title.
Hope y'all don't mind my sharing it. It might explain why my postings dropped off so sharply a few weeks ago after managing to spend quite a lot of quality play time here.
S'all for now - I'm really beat. But feeling good and kind of looking forward to the morning.
Thanks for the link to your article, sndrake. You spurred me to do some digging overnight while I was at the computer for other reasons, and I've found that there's a lot more to this case than I'd assumed (unfortunately, I assumed it was much less straightforward* -- which was an eye-opener to me about where my own blinders lie).
I have to think some more before I ask you some more questions. My suspicion is that we may disagree on some key points, but I'd really love to be challenged on those blinders.
How awesome that you found your way to Hatrack. Again, thanks.
------------------------------------------------------------------------------------------------------- [Edit for clarity after sleep deprivation:
*(e.g., on further reading, I can't believe the judge ruled the way he did, and I can't find a viable defense for the husband's pattern of actions -- how did this case get as far as it did?) ]
posted
Thanks, everyone. There will be time for more detailed discussion later, I hope.
This probably gives some people a clue why I prefer to spend my time here discussing apples (the last of my macouns is gone) and trading puns.
I've been doing this stuff since 1996. Over the last 3 weeks, it's been almost round the clock.
What I really want people to come away with are questions about how this case and the issues have been portrayed. As I stated, there has been a strong disability involvement in this case. Yet our perspective has been almost universally ignored - with a couple exceptions from the Chicago Tribune and Philadelphia Inquirer.
Whether one agrees with our perspective or not, shouldn't representation of our perspective be on a par with that of bioethicists and "end of life" authorities who dominate as "sources" in coverage?
BTW, here's a link to a joint statement put out Monday by a number of disability groups, most of whom are a lot less "edgy" than the one I work with:
A friend of mine was born in Sri Lanka, of parents who could not afford another child, so the doctor decided to just let the baby die. But a nurse noticed the baby was still alive, and she took it home instead of "disposing" of it, like everyone thought she did. She left that hospital's employ, and raised the baby as her own. He wound up going to school in India, and eventually made his way to the U.S. I met him at church a few years ago. He was in his forties, working as a school teacher (science and math). He also ran twice in the Detroit Marathon (I drove him down and picked him up afterward).
Of course, his case is a little different, because he was not in any way disabled. Nonetheless, he had been designated to be left for dead. To this day, his biological parents and the doctor and hospital have no idea that he survived.
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here in the U.S., the main victims of these types of medical killings have been people with disabilities, especially newborns - but there seems to be an increase in the ease with which adults unable to communicate can be killed through neglect in many states.
For anyone familiar with Slate, here's an interesting piece, from a commentator who had a sudden epiphany on some of this as a result of an interview on NPR with a woman in Florida:
quote:How to Prove You're Not Vegetative ... while listening to them debate whether to kill you. By Mickey Kaus Updated Tuesday, October 28, 2003, at 3:36 PM PT
(excerpt)
quote:NPR vs. NPR: I was just growing more sympathetic to the cause of those who want to pull the plug on Terri Schiavo--then I heard an eye-opening interview on NPR's Day to Day with a woman who says she was near to being diagnosed as being in a "persistent vegetative state" and was trying desperately to signal her doctors and nurses while they debated the most convenient time to kill her--sorry, I mean, exercise her "right to die." If she tried to make repetitive letter motions with her hand, they sedated her. ... She was finally saved by one nurse who suspected she "was in there." ... Her case may not be Terri Schiavo's case--but it's enough to make one very wary of the wonderful ethical/legal consensus, obediently trumpeted by All Things Considered and Slate's Dahlia Lithwick, that has established the PVS/plug-pulling protocol. ... How does a) the number of innocent people who will be executed under death penalty procedures compare with b) the number of innocent, live patients who will be killed under a tendentious diagnosis of PVS? I'd guess the ratio is probably one to 100, maybe 1 to 1,000. But the American left makes a huge (and legitimate) fuss about the former while it actually promotes the latter. ... [Conflict note: I do occasional bits for Day to Day, which has a relationship with Slate.] 2:45 P.M.
posted
WorldNetDaily is now linking to your op-ed from their "Commentary" page. Congrats! Not only in the LA Times, but having other sites link specifically to your article -- even if it is just WND. . . . Still a good thing, I think.
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posted
What bothers me -- really bothers me -- is that the husband argued in a malpractice suit that her expected life range was to 51 yrs old, and he needed big bucks to cover the extensive costs of rehabilitation. Then, shortly after the settlement, he places a DNR order on her chart and refuses to authorize any rehabilitation.
WTF?
How can that not be interpreted as A Bad Sign?
And then he argues that she is no longer present anymore, that she is merely a bundle of automatic nerve responses, and that while she was still there before the accident, she expressed a wish not to be keep alive artificially. But now, even though there is supposedly no "person" left to be "disgraced" by her "undignified" situation, he refuses to permit her parents to assume care for the shell that is left, using the money as it was intended, as he promised in court it would be.
Rather, he lives with his fiancee and their (soon to be) 2 children, while he waits for his wife's body to die.
WTF? Why not just abdegnate responsibility for the body and get on with his life?
And what about the previously unaddressed bone scan that showed recent trauma near the time of the accident?
posted
I don't understand why he doesn't divorce the woman and let her parents take responsibility. Can this whole thing - party to murder, legal fees, everything - really be about $300,000? Even if you accept that money is worth all that (and it ISN'T, but maybe to some people), that's not that much money! That's NOTHING! It's like that moment from a clip from Austin Powers where Dr. Evil says he'll blow up the world (or something) unless the world's governments get together and he gets ONE MILLION DOLLARS. $300,000 simply can't be the motivating factor. Enough to sell you soul? Holy crap!
posted
Thank you, sndrake! This issue is of great importance to me...
I work (volunteer only, as I am not able to provide useful service in a consistent manner) for my local women's shelter/domestic violence and sexual assault advocacy and intervention services. I am/was also a client. I am also disabled. I have a controlling and abusive husband upon whom I depend for shelter and absolutely no income.
I have been in the position of not being able to move any part of my body to signal distress while suffocating on my own vomit. Until I lost conciousness, the medical attendants nearby were intent on discussing their weekend plans and golf scores, not on paying any attention to me. I don't know why I lived through that incident. But I remember how it felt.
Terri Schindler-Schiavo IS "in there somewhere". We may not be able to tell for sure, but if she is mentally active, we owe it to her not to put her through the experience of needlessly dying a prolonged and painful (emotionally or physically) death. If she is not at all aware, then caring for her body and attempting rehabilitation isn't going to hurt anything, regardless of what her "husband" says her wishes would be. With disabled people, a failure to communicate is on both sides. We need to adapt our listening to the speaker's capabilities. Just because someone can't make their wishes known "normally" doesn't mean they don't have them, or that we can make up whatever we think they should want.
My opinion is that M. Schiavo's behavior is despicable....not providing Terri the best care and rehabilitation, using her malpractice money for legal costs trying to get her killed, and living with and fathering children by another woman while he is still married.
If he were an honorable man, he would have divorced Terri and given her guardianship over to her family instead of continuing to try to control and abuse her, and not committed adultery.
I wish there was more I could do. Thank you for your work!
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quote:I have to think some more before I ask you some more questions. My suspicion is that we may disagree on some key points, but I'd really love to be challenged on those blinders.
I'm not surprised at all that we might disagree on some things. I also suspect, though, based on previous conversations and this particular message, that you don't deal with disagreement through exclusion.
One of the many problems the disability community has faced in these "life and death" issues with disability at their core is the complete willingness of the mainstream medical establishment, bioethicists and the media to cut us off from the discussion table.
I don't want to throw out a claim like that without a little substantiation. Earlier this year, there was a still-unresolved conflict between the extremely well-funded "end of life" advocacy community and the disability community. It's our contention that a lot of disability health care policy is being mislabeled "end of life" policy, a neat use of language to shut out the affected parties.
Once in awhile, one gets direct confirmation of one's own paranoia:
quote: "It was a deliberate decision -- and it was irresponsible."
Dr. Ira Byock, author of Dying Well and one of the founders of Partnership for Caring, is adamant about what he sees as that "end-of-life" organization's failure to seek the input of disability rights groups.
Byock quit the board of Partnership for Caring a couple years ago over these and related issues. The CEO of the hospice chain that Terri Schiavo was being starved at is on the board of Partnership for Caring. That entity - Hospice of the Florida Suncoast - used to have George Felos sitting as president of its board of directors. Felos quit that role in order to represent Michael Schiavo in the legal battle to remove her feeding tube.
More replies to y'all later... Many thanks for the feedback so far!
posted
Great article! Glenn Beck has a nationally heard radio program and has been vocal in advocating that Terri Schiavo should be allowed to live. I heard quite a passionate plea from him one day to the Governor of Florida not to allow the killing of Terri. He has a section on his web site he updates with new information on the situation.
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posted
Thanks for writing that piece, sndrake! Beautifully and powerfully said.
Has anyone said if the husband might be waiting on a life insurance policy that is floating around, waiting for this lady's life to end?
Also, who funds the right to death groups? Has anyone looked into that? For some reason, managed healthcare companies and health insurance companies sound like they may be involved.
Please excuse my ignorance on these topics if this happens to be commonly known info.
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posted
Please forgive time lags - things are busy. I'm trying to do replies roughly in order.
First - an unexpected surprise. I get paid for this! Probably not a lot. But you get a nationally read newspaper to carry your message and get paid???? Incredible.
Magson,
It was good to hear that Worldnetdailynews was putting link to it. See, it hasn't just been the mainstream press that's been treating us like we're invisible, but also the conservative, pro-life, sites as well. A couple of reasons for that. And I'll probably discuss them more later if interest keeps up.
First, of course, is their own desire to see Terri's situation framed as a "right to life" case or cause. We don't fit there. We tend to be situated on the political left on a lot of things and have (at least my group doesn't) no position on abortion. And when you're dealing with conservatives, they aren't comfortable writing about "disability rights" - at least not in a way that is nondisparaging.
What that comes down to is that there are reasons for sites like that one to marginilize disability groups in discussions like these. Disability involvement has gotten very little mention on worldnet in its coverage of Terri Schiavo.
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posted
Just as a note, Glenn Beck is a conservative championing the cause of Terri Schiavo and has since finding out about the situation.
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I was writing too fast. Beck has been good - and I think he's at least acknowledged the disability perspective on this. Lockwood Philips, who has a show in Eastern North Carolina, is a conservative who's also done a good job of dealing with the disability perspective.
But when it comes to conservative news services like Worldnet, Fox and others, they have omitted the disability groups and our involvement for the most part even though they are (for the most part - Bill O'Reilly being an exception) helping to fight for Terri Schiavo's life.
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posted
More later tomorrow. I'm fried. Had to draft a press release. After reading my op-ed it shouldn't come as a surprise to any of us that an organization of "Florida medical directors" issued a statement today calling for a repeal of the so-called "Terri's Law."
quote:"Requiring judicial and executive review of complex end-of-life decisions is an unnecessary intrusion into the private affairs of a patient and family...
Sounds familiar, doesn't it? I should have seen this coming.
The bottom line is that even though they recognize this is a difficult, uncertain and ambiguous situation, it's better for everyone if Terri starves to death. So the system can go on and function without this disruption.
I'll get a URL to one of the article on this out tomorrow sometime.
After I fax out some press releases and make some calls...
posted
My first reaction to hearing about this case was that they should let her die if its whats best for her, but I admit that I'm not entirely clear on the facts. I could have been premature in thinking this. I haven't followed the story very closely.
So I guess she probably has upper brain function then, which is something to consider. Is the basic situation that she is in a coma, or is that different? Is she breathing on her own? I'd assume so or else starvation wouldn't have been the issue. Does someone in her condition have any chance of regaining a reasonable quality of life or will she always be a "vegetable"?
I guess I don't know enough to make a decision right now (not that its mine to make). The things CT mentioned do sound awfully shady though. I don't really blame him for having a new family much though. Ten years is a long time. You say he should have divorced her, but would you divorce someone who you still love dearly because she was injured (or fell ill, I don't know what the situation is). Its a difficult situation he was in, and so I hesitate to judge. The malpractice money issue though is another story.
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posted
Xavier, I agree that "10 years is a long time." and that it would be hard to "divorce someone who you still love dearly because she was injured."
However, he needed to choose. Either he stayed married to his wife -- which means NOT having two kids with another woman, or even getting ENGAGED to her -- of he doesn't. This guy is at least guilty of trying to have it both ways. And I very much suspect he's guilty of far more than that.
quote: Its a difficult situation he was in, and so I hesitate to judge.
I would agree, except for one thing. He's trying to have his wife killed. You can pretty it up all you like, but he is trying to kill a helpless woman, and he's getting an awful lot of support.
posted
I'd recommend everyone that is interested in this subject to read this thread at Ornery. It gives a more balanced view of the case of Terri Schindler-Schiavo than has so far been expressed in this thread, and it presents some additional facts. This one on the new Florida legislation may also be of interest.
Sndrake, I appreciate your fear that decisions taken to stop intravenous feeding to people in Terri's situations my lead to a callousness with regard to other persons with less serious disabilities and a culture where the value of life is more often judged from the perspective of the healthy and productive and not for its inherent preciousness for all conscious beings. However, I believe your argument is basically of the slippery slope type and as such in its core a fallacy (although it may of course have value as a way to maintain vigilance). There is a big step between removing Terri’s feeding tubes and start denying life to autistics, people with Down's syndrome, etc., and there is no inherent reason for why the first would lead to the other.
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This is my take:
1. If I were totally brain-dead (PVS?) with no hope of recovery, I wouldn't care one wit what happened to my body. They could display it in a museum for all I care. Common sense dictates however that it would be a waste of the hospitals’ resources to keep my body alive and I wouldn't want the state OR my family to spend money for that purpose. If someone wanted my body around for emotional reasons, I'd say that this decision was first my chosen spouse's (if I had one) and, if she were indifferent, second my children's (again if I had any) and third my parent's -- provided of course that whoever wanted me around paid for it.
2. If I were partially brain-dead without hope of significant recovery I would like to have a choice whether I got to die or not. If I were unable to communicate, ideally I would have expressed that choice beforehand, preferably in writing. If I had not clearly expressed my wishes, I'd like the choice to be made on my behalf, first by my spouse, and if not by her then by my children, my parents or lastly my doctors.
3. If it come to unsolvable disagreement on the exact nature of my pre-expressed wishes, I would like an impartial court to examine the issue taking special account to the testimony of my spouse, who presumably knew me best and whom I had hopefully chosen for her love, care and understanding of me. If there were disagreement on the exact extent of my injuries or the prospects of my recovery, I again would like the court to examine the issues, with due regard to the best medical expertise and with proper respect for the fact that people have previously woken up from comas under unlikely circumstances.
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From what I gathered of the Terri Schindler-Schiavo case, all medical expertise agree that her higher brain functions are irrevocably dead. Even the doctors testifying for the parents could say only that therapy could perhaps yield a little more responsiveness. As Terri has supposedly expressed her wishes to her husband that the plug would be pulled in similar circumstances, and as the courts have examined that claim as well as the medical evidence and concluded that Terri under current legislation have the right to die, I can see no valid reasons for keeping her alive.
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I would also like to express my distaste for the new Florida legislation that gives the Governor under certain circumstances the right to step in and overrule court decision in cases such as Terri's. It's the role of politicians to legislate and of the courts to impartially apply the law. Giving the power to a politician to on an ad hoc basis go in and arbitrarily change the outcome of the court process can lead only to uncertainty, populist decisions and denial of justice. If the legislators in Florida feel that the parents have insufficient influence on the fate of their PVS children, then put them on equal footing with the spouse in this respect and let the courts sort it out. But don't leave the decision to one man that may or may not interfere -- and that on reasons which are entirely his own. That is absurd.
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Oh, and as a concluding comment. Sndrake, the doctor present at your birth was obviously wrong. You clearly are not a vegetable. However, I don't think you can take that as evidence that Terri's diagnose is equally wrong. Naturally before taking such drastic measures as to cease life support, we should require both a second and a third opinion. But in Terri's case both a third and fourth and probably a great many more opinions have been obtained. If we are to allow the cessation of life support at any point short of decomposition, we HAVE to trust medical opinion at some point. And I believe that such trust is long overdue in Terri's case.
I'm probably not going to be able to reply to everything in your message at once. It contains a lot of inexact and inaccurate terminology - a lot of which I saw replicated on Ornery, which doesn't exactly serve as an advertisement.
You're using "brain-dead" and "vegetative" interchangeably. It's understandable - there's a lot of it going around in the mainstream press. And it's interesting that there hasn't been a lot of energy from the medical "experts" in getting to the media to clear up the confusion. Nonetheless, equating one with the other is simply not defensible.
"intravenous feeding tube" is not what she has. That would suggest being fed through the blood somehow. Schiavo takes food in via a tube leading to her stomach - an "advanced" technology powered by gravity and invented in the 1800s.
Tristan:
quote: There is a big step between removing Terri’s feeding tubes and start denying life to autistics, people with Down's syndrome, etc., and there is no inherent reason for why the first would lead to the other.
First, it's not a "slippery slope" when you're describing something that's already happened. The incidents described of killing infants with disabilities are only 20-25 years old. Do you really think that the kind of mindset that tolerates that behavior just disappears in that amount of time?
Look at your own arguments justifying why she should die - you wouldn't want to live like that. The combination of physical and mental disabilities, how expensive she is, etc. - how does that not relate to people born with severe disabilities?
I'll post some excerpts from press coverage later that's more detailed than the stuff that reached Ornery - one really good one in the Chicago Tribune. Reminds me, please tell the folks at Ornery that the $700,000 awarded for Terri's care is mostly used up - but not on her care. It's been eaten up in legal fees in Michael's efforts to end Terri's life. George Felos has pocketed over 300,000 himself in fees. The $300,000 awarded to Michael for his loss has not been used to pay for legal fees and apparently won't be.
Oddly enough, Michael Schiavo never mentioned anything about his wife wanting to die during the malpractice trial. He said that any money he got for her care would be used to support her for the rest of his life.
I know a lot of folks like to discuss these issues as a hobby. It's my work. You can disagree - but please don't accuse me or the other disability groups of failing to do our homework.
More later - I think some source material deserves a separate post. And then there's a little rant on the word "vegetable" coming...
But I'll probably wait until I'm less tired and in a better mood.
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First, my apologies for the confusion with terminology. When thinking about it now, it seems obvious that "brain-dead" would be when, well, the brain is dead, whereas PVS would be an unreversible total -- or nearly total -- paralysis. Unquestionably a very important distinction. And I agree with you that "vegetable" is an unfortunate and derrogatory term, so you may spare yourself your rant, at least on my account . Apart from the PVS thing -- which I thought was a medical definition -- I only used it when referring to your doctor's statement (and I should have used quotation marks).
Second, I am not much interested in discussing the ins and outs of the Terri Schindler-Schiavo case. I readily admit that I've got my only information about the case from here and from Ornery, and since you are much better informed than I, I am prepared to take your word if you say that her husband is a sleezeball and that his treatment of Terri has been highly irregular.
I am more interested in discussing these issues on a more principled level. There are two quotes in your latest post I would like to comment on.
quote:First, it's not a "slippery slope" when you're describing something that's already happened. The incidents described of killing infants with disabilities are only 20-25 years old. Do you really think that the kind of mindset that tolerates that behavior just disappears in that amount of time?
It may be that some of those arguing that Terri should stop being fed have a similar mindset as those that advocated killing of disabled babies in the past. And we certainly must be on guard that such memes are not spread without opposition. However, if we assume that two facts are true: a) that Terri is indeed irrevocably brain-dead and b) she did in fact express a wish that she would be allowed to die in such a circumstance. How would the society accepting such a wish lead to the acceptance of killing babies with disabilities? To me this is to accept the individual's supremacy of her own destiny and to recognise that once the consciousness is irrevocably gone the person is for all intents and purposes dead. To kill babies with disabilities is to deny them their only chance to experience life and not even close to comparable, even if you disregard the fact that these babies have had no chance to express their view on the subject. That the latter already has happened does not logically mean that the former was the cause, and thus I still see it as fallacy to argue that one would follow on the other.
quote:Look at your own arguments justifying why she should die - you wouldn't want to live like that. The combination of physical and mental disabilities, how expensive she is, etc. - how does that not relate to people born with severe disabilities?
Note first that the only time I factored in expenses was in my first example where I were totally brain-dead. If all brain activity has ceased, I consider a person in effect dead (I believe that is also the legal definition of death in Swedish law) and have no problem with stopping life support to the body. Do you disagree with me here? If someone wanted to keep my body around anyway, well, provided that those most concerned do not object, that is up to them; although naturally I expect them to shoulder the cost for their fetish with my body by themselves.
In my second example, the operative word is I. I had expressed a wish WHETHER OR NOT I wanted to be kept alive in a partially brain-dead state (and to clear up terminology, when I wrote this I did not think of PVS in the sense of only being totally paralysed, but a state where the higher brain functions were gone but I retained basic functions like control of breathing, some reflexes, etc.). I believe this choice is mine, and would feel really miffed if my kin (or the state) went against my wishes on the subject. If I had done nothing to indicate my decision one way or another, I can see that there may be cause for concern that a decision would be made that went against what I "really" wanted. However, the list of those I would be prepared to trust with that decision goes like I indicated: spouse, (adult) children, parents and doctors.
Heh, when thinking a little more about the issues, and how this relates to people born with a sever disability, I am starting to have added concerns, and see things from your point of view, sndrake. I am not sure I believe that the parents have the right to make the decision to end the life of a disabled baby if there are faculties enough working in his or her brain to support a consciousness. I'd like to propose a third category, with the effect that people who are deemed to possess consciousness should be presumed to want to be on life support unless there is good evidence to the contrary. On the other hand, being "trapped" in an immobile body while still remaining conscious would to me, and propably to many others, be much worse than if the brain has ceased to function. So I'm not sure if that presumption could safely be made with regard to adult, not previously disabled, patients.
*Sighs* It's getting very late here, and I'm not sure I know where I'm going with this. I will have to finish my thoughts tomorrow.
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posted
I thought it might be useful if I posted some documentation in regard to the issues surrounding "persistent vegetative state" - despite the pronouncements being made by a lot of the experts being quoted in news coverage, the actual mental status of people with the "PVS" label is far from clear. Here's a link and excerpt from an abstract to a 1996 article in the British Medical Journal:
quote:Results: Of the 40 patients referred as being in the vegetative state, 17 (43%) were considered as having been misdiagnosed; seven of these had been presumed to be vegetative for longer than one year, including three for over four years. Most of the misdiagnosed patients were blind or severely visually impaired. All patients remained severely physically disabled, but nearly all were able to communicate their preference in quality of life issues--some to a high level.
Conclusions: The vegetative state needs considerable skill to diagnose, requiring assessment over a period of time; diagnosis cannot be made, even by the most experienced clinician, from a bedside assessment. Accurate diagnosis is possible but requires the skills of a multidisciplinary team experienced in the management of people with complex disabilities. Recognition of awareness is essential if an optimal quality of life is to be achieved and to avoid inappropriate approaches to the courts for a declaration for withdrawal of tube feeding.
(emphasis added)
I don't know how many people saw this AP article last week, but it raises some very interesting questions about the status of people with the "PVS" label:
quote:CHICAGO -- A small study suggests that some brain-damaged, vegetative patients may have greater awareness than doctors previously thought.
The findings could have a bearing on right-to-die cases such as the one involving Terri Schiavo, who suffered severe brain damage in 1990 and is the subject of a family dispute over whether she should remain alive.
The question remains - who'd want to live like that? It's an open question, since we don't know how many people are getting their lives ended with no chance to communicate their wishes.
We have two survivors that signed onto our "friend of the court" briefs in the Schiavo appeals. They both had "near-death" experiences - presumed to be unconscious, with medical professional urging cessation of life support, while they struggled to communicate.
quote:James Hall is one of 35 people to experience a documented pontine stroke—a stroke that leaves a person’s mind trapped in a body that is dead. Once brash, cocky and philandering, Hall enjoyed the high life, but all that changed in an instant. In fact, after his stroke, his life was nearly terminated by his physicians, who believed he was brain-dead. Was he really alive? Friend and colleague Patton Howell, Ph.D., helped reveal that Hall’s mind was fully functioning. Here is an account of his stroke and the days following it.
Warning - James Hall's first words to his physicians, as told in the story, might be offensive to some.
quote: In February of 1985, I woke up in a hospital bed in Boston, MA. I couldn't see very well and I couldn't move much -- but boy could I ever hear!
I heard a terrifying discussion then that I will never, ever forget.
Around the end of my bed were a "school" of doctors in their white coats, planning when to disconnect my ventilator and feeding tube. I immediately started screaming, "I'm here!!" No one but me heard me.
They did notice my sudden agitation. They heavily sedated me. For a time, everytime I woke up I would make as much noise and move as a much as I could to show them I was "in there."
And they would, in response, heavily sedate me...
More later. It's Saturday. I'm at the office. And there's work to do.
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posted
Thought you might be interested in seeing Letters-to-the-Editor from Sunday's paper in response to the article.
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posted
Thanks, rivka. The studies referred to in the second response are actually quite disturbing -- physicians' guesses about the perceived quality of life of their patients with ascribed disabilities is consistently well under the quality ranked by those patients. Unnerving.
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posted
Quick rant about the first letter in that link.
The standards that the judges used in deciding whether to remove hydration are not constitutionally protected rights. They are standards for determining the patient’s wishes in situation where the patient left no written instructions.
These standards were either statutory law or common law. Statutory law is law passed by the legislature (Congress or the state legislature) and approved by the executive (the president or governor).
Common law is created (or discovered) by judges. Most law is common law – either outright created by judges over the course of centuries or judicial interpretations of statutory law.
Statutory law always trumps common law. This is a crucial part of the systems of checks and balances. Each branch has checks against the other branches and is checked by the other branches. Judges can overrule unconstitutional laws, congress writes laws to be enforced by the executive and interpreted by the judiciary. The executive appoints judges.
We’re so used to hearing about constitutionality challenges where the judiciary strikes down a law that we’ve forgotten the judges follow the rules the legislatures create. The only exception is when judges rule that the statute conflicts with a superior source of law. In a state law situation, this means the state constitution, federal laws and treaties, and the US Constitution. If a statute does not violate one of these sources of law, the judge is bound to follow it. If it does, the judge strikes the statute down.
It is absolutely within the purview of the legislature to decide what evidentiary standards are used when a patient is unable to give instructions on the type of care she wishes to receive, and has not created a living will to do so in advance. The legislature can delegate that authority as it sees fit, as long as such delegation does not violate the state constitution, federal laws and treaties, and the US Constitution.
To equate this process of checks and balances with a dictatorship is not only poor taste; it shows an appalling lack of ignorance of the law.
Dagonee PS, I know no one here has claimed the opinion in the letter as their own – I just needed to vent.
Posts: 26071 | Registered: Oct 2003
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posted
Dragonee, what you're saying is all good and well as far as it goes, but I think you have misunderstood the complaint of the letter writer. It appears to me that what he is objecting to is not the legislators' right to set the evidentiary standard when the courts determine consent, but rather that the legislator has moved the right to evaluate the evidence from the courts to the governor, i.e. to the executive. I have not enough knowledge of US law the determine the constitutionality of such a move, but I think it is highly questionable in principle. As I wrote in my first post in this thread, I believe giving the power to a politician to come in and arbitrarily change what is properly a decision taken by the court is highly damaging to the justice system.
Posts: 896 | Registered: Feb 2001
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posted
To me, what was offensive about the first letter was not so much any of the points it made. It was the fact that it was clearly NOT a response to sndrake's article -- although it cloaked itself in related rhetoric -- and was instead a rant about separation of powers as it may relate to this case.
I thought it in very poor taste, regardless of whether one agrees with its arguments. And of course, the writer found it necessary to invoke Hitler . . . Posts: 32919 | Registered: Mar 2003
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I tend to agree that such decisions are best made by the judiciary and that this might not have been the best way to handle it. I mostly took offense to the general ignorance exhibited by the letter-writer and the comparison of a legislative action to a the actions of a dictatorship.
posted
Just a quick update - I'll do some replies later today on other stuff. My op-ed has been picked up and published by a number of newspapers - most only in the print edition. The Honolulu Advertiser, Milwaukee Journal-Sentinel, Ottawa Citizen, Missoulian, Queens edition of Newsday, and the Tampa Tribune all published my article in their Sunday editions. There may be more, but I won't know for a couple of days - since most of these aren't being posted on the web versions of the papers, they don't show up on search engines.
I highlighted the Tampa Tribune because I'm especially excited about it. The Tampa Tribune and other Florida papers have gone out of their way to omit any mention of disability interest and involvement in the Schiavo case. That pattern extends to the Associated Press offices in Florida as well.
My take on it is this: Journalists are used to framing stories like the Terri Schiavo struggle as "right to die" vs. "right to life." They are unwilling or unable to depart from telling the story they are accustomed to even when facts and events call for it.
That goes for conservative news sources as well as mainstream ones, BTW.
Posts: 4344 | Registered: Mar 2003
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quote:Also, who funds the right to death groups? Has anyone looked into that? For some reason, managed healthcare companies and health insurance companies sound like they may be involved.
That's a complicated question. "Right to die" is a concept that has undergone expansion over the last decade. Let me make an attempt at breaking it down a little.
Pro-assisted suicide groups: The memberships in these groups consist almost exclusively of white people and with a significantly higher median income than the general population. (we refer to these as the "4W's" - the White, Well-off, Worried, Well.") These groups subsist mostly on generous donations from the most privileged segment of society - people who haven't had to struggle to get adequate health care, haven't experienced real discrimination at the hands of the health care system.
A couple of the assisted suicide groups have gotten very savvy - professional public relations help, etc. They've expanded into other "end of life" adovocacy, making themselves more attractive to some health care philanthropic organizations.
Lastly, there's the "end of life" juggernaut. Groups such as Last Acts have received huge amounts of money to organize statewide groups to change laws related to "end of life" care. Some of that advocacy has resulted in expansion of the definition of "terminal illness" in a few states. Dismantling protections of people under guardianship (they wouldn't put it that way, though) is also part of the legislative activity. They've also spent a lot of money on media advocacy - influencing how media portrays their issues in both news and entertainment productions.
Robert Wood Johnson Foundation, all by itself, has poured at least 150 million dollars into "end of life" advocacy. Combined with moneys from the Soros Foundation, Commonwealth Fund and others, I'm sure the total amount of philanthropic funding into these "end of life" groups has to total over a quarter billion dollars.
Not sure about the insurance companies as yet. I'll tell you, this, though. Our website gets an awful lot of hits from some insurance sites and health care associations. I don't tend to think they're looking for ways to be supportive of our efforts. Posts: 4344 | Registered: Mar 2003
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posted
Probably my last post on the topic unless there's renewed interest. I just wanted to tie up a few loose ends.
ClaudiaTherese:
quote: The studies referred to in the second response are actually quite disturbing -- physicians' guesses about the perceived quality of life of their patients with ascribed disabilities is consistently well under the quality ranked by those patients. Unnerving.
We have an outdated and incomplete list of citations on that subject at the following URL:
As I said, the list is incomplete and out of date. However, studies are remarkably consistent. People with disabilities are satisfied with their lives - with medical professionals believing the "quality of life" of these same people is low.
I feel I need to say something about the word "vegetable" and how I used it in the article. Originally, it wasn't part of my submission. Someone on the LA Times editorial staff found biographical material on me on the web and suggested the piece would be stronger with that part in it.
I was concerned about putting that part in, for reasons that have become obvious. My concern and emphasis is with the function of the word. In other words, what is the goal of the user of the term when they use it?
Some readers have gotten that - "vegetable," no matter who it used to refer to, is meant to objectify and literally dehumanize the person being referred to. Often, justification for killing or warehousing is the ultimate goal of the speaker using the term.
Others got stuck on how my situation was "different" - since I obviously wasn't a "vegetable." That wasn't my intent, but I knew that was a likely consequence of using the term in this way in the article.
For what it's worth - I think the word "vegetable" belongs in the same category as other vicious slurs used against gays, blacks, and other groups. The word is always meant as a way to objectify a human being and its use is all too often a prelude to violence against that individual.
I worked in the field of developmental disabilities for over 10 years - as a teachers aide, group home staff, day treatment staff. During that time, I worked with many people with combinations of severe physical and mental disabilities - not one of them deserved to be written off as a "vegetable" - and quite a few bore similarities to Terri Schiavo.
Hope this makes things a little clearer.
Posts: 4344 | Registered: Mar 2003
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sndrake, do you have any interest in having (if you don't already) a newsprint copy of your article? I have the section of the Times saved, if you want it. Just email me your snail addy, and it's yours. Posts: 32919 | Registered: Mar 2003
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