[I’m “promoting” this comment left by “Cerebrocrat” in the Terri Schiavo News thread. –Amp]
Cerebrocrat wrote:
But there’s something being lost in this discussion of brain imaging methods. The fact that an MRI would give a better structural picture of Terri Schiavo’s brain does not at all mean that the existing CAT scan isn’t good enough for present purposes. I see much serious armchair scan-reading in this thread that signals ignorance of the subject. Let me tell you: if you are sufficiently familiar with brains and brain images, you do not need an MRI to tell you how severely the brain in the pictured CAT scan is damaged, nor do you need to see more slices than the one depicted here. This single image shows a very severely damaged brain. The large “blue blobs” in the middle are ventricles, also present in healthy brains (you can see the two little dark crescent shapes in the brain on the right) that have expanded to such a large size because the overall brain volume is so low. Cranial space that would otherwize have been filled by gray matter is now filled with cerebrospinal fluid. And yes, that’s what the blue space is: cerebrospinal fluid that is filling up space left behind by necrotic brain tissue that has been scavenged and removed by the body. The white squiggly things are white matter – connective tracts that have the loose, uncoiled look about them that they do because, again, the grey matter that once compressed them is no longer there, so they “float” loosely in CSF. The gigantic ventricles, expanded white matter, and undifferentiated blue space in that scan all point to the same thing: massive loss of grey matter in the cerebral cortex. You don’t need an MRI to tell you that, it’s clearly visible in the CAT scan.
It is true that given the poor resolution of this image, it’s possible that some cortical tissue has been spared. But that doesn’t matter. Whatever wisps of cortex we might be missing in this image are not enough to sustain behaviors that could differentiate Terri Schiavo from any other vertebrate. All the neural equipment you need to do ocular following and emotional responses is subcortical. All the neural equipment you need to be a self-aware, reasoning, behaving human being is cortical. And since i gather this image was made some time ago, the present condition of the brain can only be worse.
There is no way any qualified brain doctor or scientist could look at this image and suggest that significant recovery of function is possible. The fact that we could have all this discussion on the subject is a triumph of politics over science. Tragic for Terri Schiavo, and really for us all.
(Please see the comments for Cerebrocrat’s description of his background).
Have to add my opinion to all of these.
I have to agree that, while I’m not in the medical professions, it doesn’t take a rocket scientist to see there is a major problem with Terri’s brain.
I still have questions re: her cognitive ability, mainly because her so-called husband won’t allow any tests. Couple that with his refusal to allow her outside, refusal on numerous occasions to allow her family in to see her, the story of the nurse who found an insulin container in Terri’s room years ago and his desire to have her cremated knowing full well that an attended death won’t require an autopsy is too suspicious a behavior to allow this clown to have his way. He should have forfeited to rights as a spouse after he moved in with his present squeeze and fathered the children. But they’re in Florida, and those people can’t even vote right.
A person’s life is not a throw-away thing. If there remains a shread of decency in the law, what harm would there be in retesting her with the most up to date methods avaialable? There would be a definitive answer and Terri’s parents would have a little peace, Michael would get his money and marry his girlfriend, and all would go their separate ways.
While writing this, it occured to me that it’s a very good thing that Steven Hawking doesn’t live in Florida.
I’m not neccessarily anti on this matter, but there are more humane ways to go about ending a life if one is hell-bent on doing so.
Final item of interest – The judge’s (Greer) pastor told him not to come back to his church.
Frank
In America it appears that Liberalism means death for the weak and those who cannot speak for themselves. The arguement goes like this. The Liberal says that if you cannot speak and appear to be unresponsive you are a ‘vegetable’ and as a ‘vegetable’ you should die, because no Liberal would want to live as a ‘vegetable’. The Judges say that the way to kill you is to starve you to death, this is OK because you are a ‘vegetable’ and ‘vegetables’ have no rights. Husbands can order the death of ‘vegetables’.
Now strangely in America the right wing who often advocate the death penalty for wrongdoers say that ‘vegetables’ have the right to life, whereas Liberals says these people have the right to life and oppose the death penalty. Strange world
Lotusblossom and others – trust me I DO understand. And my own personal ex-husband has nothing to do with things. More than 30 years ago I allowed my own mother to make her own decision to die. I could have forced her to get treatment for the illness that would kill her , but she had had enough after a decade of of multiple aneurisms, half a dozen brain surgeries and more. I respected her wishes. By the way, my father took primary care of her every day of those ten years that she was not hospitalized with only such assistance as I could give him. He did NOT acquire another wife in the meantime. When the day came Mom could take no more she called me up, said goodbye, and died in her sleep – next to my father.
Ten years later I woke up one day to find that I had been in a coma for several weeks after being crushed under a drunk driver’s car. Fourteen broken ribs, bilateral pneumothorax, major concussion, brain damage and a paralyzed upper right quadrant. Worst of all to me, I could not read because my eyes wouldn’t track correctly. Let’s not forget the ventilator and attempts to force feed me – you can’t eat or drink on a ventilator. I refused tube feedings. Made them remove the vent – not just turn it off. Refused the surgery the “premier” hand surgeon in the Northeast wanted to perform to remove nerves/muscles from my back to transplant into my arm.
No one ever asked me what I experienced while in the coma. I remember many things but one in particular – two men in white coats standing at the end of my bed saying “this one isn’t going to make it.” In my head (you can’t talk on a vent) I said “Watch!” They told me I would lose permanent use of my right lung. Wrong. And that I would be permanently paralyzed without surgery (partially even with.) Wrong again. A year later I sent that surgeon a picture of me doing a cartwheel – with both arms on the ground. I spent two years teaching myself to read again one word at a time. When I was done learning to read I acquired degrees in chemistry and medical science – Magna cum laude. That was nearly 20 years ago.
Five years ago my little neice was diagnosed with leukemia of an exceedingly rare type. I’m the one with the medical experience, so it was my judgment that determined where she would be treated and how far that treatment would go. She did well after a stem cell transplant for quite some time, but then acquired a fungal infection of her lungs. That is a death sentence. The family pulled the plug – on her grandmother’s birthday.
Adultery is adultery – even if your spouse is in PVS and can’t give you “permission.” Bigamy is a crime that results in jail time. In particular I find it really hard to swallow, having grown up in a predominantly Catholic New England town, that the Schindlers ENCOURAGED Michael to abandon his marriage vows. When you choose to abandon the responsibilities – richer, poorer, sickness, health – of your marriage vows then you should also give up all rights that are granted by those same vows. It really doesn’t matter whether Michael is a nice guy and the Schindler’s are right wing holy roller jerks or he’s a thief and they are saints. It really doesn’t matter which party is the most wrong or right. IT DOES NOT MATTER WHETHER TERRI IS IN PVS OR SOMETHING ELSE.
Only one thing matters: how our society treats our disabled when it comes to end of life/life preservation decisions. They – and we – all deserve every bit as much protection as our criminals do. Terri has NOT gotten that.
i did a statistical study on the schivo’s case position vs. political denominartion..i got interesting results…
http://best.modblog.com
check it out
I understand that the Baptist church that Judge Greer was a member of has excommunicated him.
Also in religious news, the friars you see with the Schindlers? When their founder fell into a PVS a few years back, they pulled the plug on him.
Reading these images of Schiavo’s brain makes me think that she doesnt have much viable brain matter left, as has been described by cerebrocat in the post. From my little knowledge of medicine that i have accquired as a student of medicine i thin kthere is really no chance of her revival to a working body.
I would agree with robert in that if Schiavo is to be saved the argument has to come form philosophical or religious grounds and can’t possibly be driven from medical side of the persepective.
As a minor student of Islam i think that there is clear injunction to the act of saving life however way possible. I suppose Christianity and other religions believe the same.
There is atleast clear injunction in Islam for mercy killings of animals. But in the case of Human Beings the rulings are the other way round. We have to save lives in any way possible.
As for those who believe that money saved from her treatment could be used to treat people who have hope of living i think it is not a substantial argument. There is no dearth of wealth in this huge world. And Schiave isn’t consuming a whole lot out of it. I personally wouldnt like to kill someone just for this reason.
Dr. Ted,
In #231 you entered a chart comparing functions at various classificatons (coma, PVS, minimally conscious state).
Would you be willing to add the column for “locked in syndrome”? I’m interested in the differences.
Based on what objective standard can you be reasonably sure?
For that matter, to return to a previous example, imagine that I am suddenly crushed by a piano, with only my arm escaping. Someone argues that my arm must be kept going on life support, because my soul may yet be clinging to it. How – other than deference to authority – could you argue that he’s wrong?
I don’t see any principled way for someone with a non-materialist point of view to distinguish between death and life. And just saying “it is so” is no answer.
Fine, let them keep it at the back of their minds, so long as the arguments put forward to justify laws are applicable to all, not just applicable to people who share a particular religious view.
At the point where we can make laws to protect souls, I don’t see what principled argument you could make against forbidding non-Christian religions (since souls not saved by Christ may go to Hell).
Thanks!
The difference is that there is very little harm done by keeping someone on Death Row for 15 years while we decide a Death Penalty case. In contrast, if Comotose Carla would have greatly preferred not to kept alive for years in a PVS, then keeping her alive for years does do significant harm to the idea of self-determination and to our goal of respecting autonomy.
My response is the same. Suppose, for a moment, that Terri’s husband really is the person who knew Terri, and her wishes, best. Suppose that Terri would have been horrified to be kept “alive” in this state, and to not live on as she really was in her loved one’s memories, but instead to have their memories of her mostly replaced with memories of a mindless body.
That is an unfixable mistake. What we have here is not an opposition of fixable vs. unfixable mistakes, but an opposition of unfixable mistake vs. a different unfixable mistake. So the weighing mechanism you suggest simply doesn’t apply.
* * *
That said, my main concern here is for the reasonable rule of law. I actually think that there are excellent arguments for the rule you suggest; I would not really have a strong objection to your suggested policy becoming law.
But it should become law in the normal fashion, and not retroactively applied to an already-decided court decision. (I don’t assume you disagree with me about that).
Although I don’t totally agree with her, I think Harriet McBride Johnson makes the best arguments for the “presumption of life” I’ve seen.
Newtoblogs,
Here is the row for locked in syndrome:
A.Condition
B.Consciousness
C.Sleep/wake
D.Motor function
E.Auditory function
F.Visual function
G.Communication
H.Emotion
A.Locked-in syndrome
B.Full
C.Present
D.Quadriplegic
E. Preserved
F. Preserved Vertical eye movement and blinking usually intact
G. Aphonic/Anarthric
H. Preserved
I can’t take seeing this one anymore without commenting:
Dr. Hawking is not in a vegatative state, minimally conscious state or anything even close to resembling such a state. He has ALS, which most Americans know as Lou Gehrig’s disease. This is a disorder involving the degeneration of the motor neurons starting in the motor cortex and working its way down. If you want info on ALS go here. There is no intellectual deficit in ALS, and there is no gross cortical degeneration.
If you consider that your great care for people with disability is so great that Terri should be saved at least show enoough respect for the disabled to not group all of them into one giant group.
WHAT IF?
What if Terri was a Lesbian with a Life Mate and she had a living will to designate her Mate to make decisions like her Husband does today.
What if her Mate decided to remove the feeding tube.
What if the parents objected like they did recently.
What if the courts heard the case.
What if our President heard about this case, would he be so relentless to get it to Congress for a vote?
If everyone is so uptight about saving a life, would this “What if” mean so much?
Harry Kelso
What IF?
Why not euthenize Terri so she doesn’t have to suffer anymore, and let Scott Peterson starve to death? Terri is not a convicted killer, yet she is tortured. Scott will feel nothing and gently slip away. Hmmmm This is insanity.
To Cerebrocat:
Are you claiming that the picture you posted labeled “Terri’s Brain” is an actual cat scan of Terri Schiavo’s brain? The reason I ask is that her medical records (ALL of them) under under court ordered seal. (Lawyers from both sides have attempted to get these records.) I’d like to know how YOU got hold of what everyone else is clamoring after. Don’t mistake me for a right to lifer (I am pro choice always), but I think mine is a reasonable question.
[Ampersand replies:
First of all, the picture was posted by me, not by Cerebrocat. Please don’t blame Cerebrocat.
To answer your question, I found the picture on the University of Miami’s Ethics Program webpage of Terri Schiavo resources. Where they found it, I do not know.]
Over and over in the last week every news organization in the world has reported and printed stories stating that Terri Schiavo is in a persistent vegetative state and has no self-awareness. The statement has been made repeatedly that she can feel no pain. Her “husband” and his attorney have presented withholding all food and water from this disabled individual as a kind and “merciful”, PAINLESS way to die.
Today they are reporting that Terri Schiavo is being administered morphine to control the pain of the dying process.
Here’s my question:
IF TERRI SCHIAVO CANNOT FEEL PAIN IN HER PERSISTENT VEGETATIVE STATE, THEN WHY DOES SHE NEED MORPHINE TO CONTROL THE PAIN OF THIS MERCIFUL AND PAINLESS WAY TO DIE??
After reading through all the posts, I believe the so called right-to-life people are basically proclaiming that their religious belief is always right, regardless of the medical evidence and legal rulings. Wasn’t the U.S. founded to escape religious persecution, that the Constitution gaurantees no one will be imposed to follow one religion? Are we not governed only under the law of the United States? If we disgard the court ruling because we don’t like it, then we become a courty ruled not by law, but by mob.
Henry wrote: Wasn’t the U.S. founded to escape religious persecution?
Short answer: NO. Check your history. Each and every religious group that came to the new world came here for their *OWN* religious freedom – not the religious freedom of anyone who disagreed with them. Early Quakers were whipped, branded and hung in Boston. Peter Stuyvesant raised holy havoc when Brazilian Jews showed up at the door. Rhode Island was founded by a dissenting minister who had been expelled from Massachusetts Bay Colony.
Not to mention that virtually everyone else came here because the streets were paved with gold or because (black or WHITE) they were brought here as slaves. Two hundred London boys were kidnapped from the streets and shipped to Jamestown as indentured servants.
Note: Less than forty of the more than 100 passengers on the Mayflowers were religious immigrants. The remainder were in the majority indentured.
BTW, the Constitution guarantees you freedom OF religion, not freedom FROM religion.
hey thinking beings…
i have posted a new statistical study on the Schivo’s case, and it would be great if ya’ll could participate…its a questionare which is only 3 multiple choices questions long…it will only take a second I PROMISE!…and i will post the results as soon as i get enough participants..
to participate click on the following link…
http://best.modblog.com
thanks for your cooperation
Nancianne,
I wondered about the brain scan too – I’ve seen it before – but I’m assuming the University of Miami knows what it’s about and that it is correctly identified.
I don’t know about this right-to-life/right-to-choice division. As long as we’re talking about the opinion of the person invovled – that is, so long as we’re not talking about abortion – there doesn’t seem to be any difference between holding that a person has a right to life, and also the right to make choices about that life.
Nancianne – you write “Don’t mistake me for a right to lifer (I am pro choice always), but I think mine is a reasonable question.”
PLEASE stop using the term PRO-CHOICE in this way. If you mean that you are pro-abortion then say so. Pro-choice is NOT pro-abortion!
If on the other hand you mean “pro-choice” in the way that we of the 70’s grass-roots women’s rights campaign conceived it, then what you mean is that you believe –
*every woman has a right to her own religious beliefs and does not have to answer to anyone’s moral code but her own.
*every woman has both a right to life and a right to control her own life
*every woman has a right to make all decisions about her life in privacy according to medical advice from those she trusts and her own religious beliefs, whatever those beliefs may be and who/whatever her God may be.
*no woman need ever answer to anyone’s God but her own.
* a woman’s life-choices are between herself, perhaps her doctor and her God.
I really wish that all you “right to lifers” and psuedo “pro-choicers” would look up “choice” in a dictionary. Alternatives must be present in order to choose.
If you fail to acknowledge the basic human right to life then there is no “choice.”
Robin wrote: BTW, the Constitution guarantees you freedom OF religion, not freedom FROM religion.
I am sure that my right is all the same, even I am an atheist? My point is that our law is written such that the state does not endorse any religion, nor enforce their values. Perhaps this article articulates much better of what I am trying to say: http://www.juancole.com/2005/03/schiavo-case-and-islamization-of.html
Well, Henry, that depends on what you mean by religious values, doesn’t it.
The state unashamedly penalizes murder, rape, child molestation, prostitution, polygamy, and innumerable other behaviors, some of which are prefectly legal under different legal and/or religious systems. Do you imagine that this list of crimes dropped on this culture out of nowhere?
On the contrary, they are all rooted ultimately in religious values. While you may not accept the religious tradition which outlaws, say, polygamy, you still obey that law (I think) while you live here, or suffer the consequences. Does this mean that an atheist like yourself is being oppressed by religious values?
Henry wrote: I am sure that my right is all the same, even I am an atheist?
Henry, has it not yet dawned on you that even the belief that there is no God (whatever you want to call he/she/it) is in fact a ****religious**** belief?
Of course it is your right to believe as you choose, as long as your actions do not interfere with anyone else’s rights to believe as they choose – especially when they disagree with you. Freedom that applies only to a single group or individual is not freedom. That was precisely what was wrong with the Taleban.
And conversely, Susan, most of these religious beliefs were established via morality of the day. Do you imagine that these lists of commandments dropped on those cultures out of nowhere?
It’s also safe to say that morals have changed over time due to increased knowledge, understanding and shunning of superstitions that once were the cornerstone on so many so-called moral beliefs of the day/culture.
Well said, Susan. Much of the shrill tone of discussion surrounding this whole affair has been caused by conflicting views on what is moral under a particular religion, and what is moral in some absolute sense. While all oppose murder, not many would agree that, e.g. eating pork should be banned, despite the teachings of Judaism and Islam.
One of the reasons Terri is arousing such great emotions is that, as with the abortion issue, one must determine what constitutes a “living person”, and decisions to end a life may be taken based on that determination. Many evangelical Christians and some Catholics seems to take a maximal view, i.e. from fertilized egg through flatlined PVS cases are living persons, and any entity in that full gamut deserves the full protection of the state.
Most Americans seem to favor a narrower definition, where terminating a clump of four cells or a long-vegetative case is not the same as murder. The former is not yet seen a person, the latter is already dead. Specific lines are hard to draw, however, compared with the clean and coherent religious perspective. On the other hand, I’m unaware of anything in the Christian canon that justifies the definition of “living” that seems to be adhered to by so many (perhaps someone can clue me in). Further, the religious side may not be so clear-cut either, as with Ampersand and Robert-Not-Angel’s exchange above.
Of course, Terri’s case has moved far beyond this, hijacked by politicians and activists of all stripes and varying degrees of venality/cynicism. I found the full history available at abstractappeal.com (cited by a number of posts above) to be fascinating reading, particularly the Wolfson report. Terri is never going to swallow again, let alone talk. In my judgement, she died a decade ago, for any reasonable definition of death.
What strikes me as so odd about the increasingly impassioned pleas to keep Terri alive, is the implication that any body with a functioning brainstem must be artificially fed and preserved until… what exactly? The body decomposes to the point that it can no longer be revived? The rot in the brain finally spreads to the reptilian core? Medical science can certainly do that for us, albeit at enormous expense, and they’re probably only going to get better at it. I know I don’t want that, and neither do my parents.
While I understand that they consider it a matter of life and death, I think the protesting subset of the Christian community is misguided in a number of ways in their approach to this tragedy. The embrace of ludicrous pseud0-science, is, unfortunately, only to be expected from many in this group (I’d like to see a poll correlating belief in Creationism with belief that Terri is capable of walking again “with therapy”).
But the demand for something that, to my mind, is truly deserving of the moniker “Frankenscience” is just sad. And then there are the issues raised by Juan Cole’s pointed essay “The Islamization of the Republican Party”
Anyway, this thread has had some of the best discussion of this case which I have found on the ‘net. Kudos to Ampersand.
hey thinking beings…
i have posted a new statistical study on the Schivo’s case, and it would be great if ya’ll could participate…its a questionare which is only 3 multiple choices questions long…it will only take a second I PROMISE!…and i will post the results as soon as i get enough participants..
to participate click on the following link…
http://best.modblog.com
thanks for your cooperation
Robin,
I have the same issue. The need to use morphine on a human that is classified as PVS, essentially a body without sensory capabilities or the processes to understand what those pain signals are, is one of the few remaining questions I have left.
This seems very contradictory unless, of course, it is to speed things along.
Dr. Ted, can you give us some more medical background on this?
Thanks, you have answered so many of my other questions.
If I were charting and found that my notes were being deleted from the computer or chart, I would make a copy of my notes and inform my employer so we could agree to the need to assure integrity of the chart. Don’t need a lecture about HIPAA and confidentiality. Fraudulent charting is a serious issue and my SPECULATION is that the judge had evidence to indicate that the staff were not truthful after he weighed the testimoney against that of others.
A few caviots… this is not about PVS. Patients die all the time with or without the nutrition and hydration, and cognition may be intact. And, if it were about brain damage, I will promise you that patients with even early onset of Normal Pressure Hydrocephalus (NPH too much fluid accumulating in the brain) will begin to lose memory, start falling, start losing balance, suffer muscle weakness, will begin to lose bladder and bowel control, and this will progress until the brain is so damaged by the pushing of the brain against the inside of the skull that within a a year or so, the patient will be total care. The patient will end up in a PVS until they die (which can take years). Fortunately, this can, with proper, early diagnosis, be remedied in many patients with a shunt to keep the pressure normalized, and if early intervention is provided, most patients will improve and regain some loss. I know this as fact from my own patient cases. Now, if this is all true, and it is, those who say that this patient could be rehabed after seeing the scan are either motivated by something other than the truth, or are so vested in their desire to save the physcial life who has lost her brain…etc. no need to finish. Anyone out there despute what I say about NPH?
Yes, experience also has demonstrated that MDs (bless their hearts) often seem to disregard Advanced Directives. However, I see that usually they push on the side of tube feedings and all that, as opposed to the other. Also, this will get me in trouble, but I will say it anyway…no harm intended, here goes…
All those that push families to never use a nursing home for a loved one, or to keep the physical bodies aive as long as they can, might step up and help out…assume total care of the incontient, total care or demented person for a week and then see if you can be high and mighty and tell someone else what they should do.
Now, I will really be in trouble, but here goes: All those who really believe that 80% of Medicare money should be spent on medical care for the last 6 months of life, step up and tell us that we should not spend in another way….
As an evangelical Chrisitan, (If we allow the self-appointed spokes person for the “right” to speak for all of u), I agree with David that it appears we that we think meeting Jesus a year or two or a day or a week “earlier” is a terrible thing. Well, I don’t think it is a terrible thing in the scheme of eternity.
This case has caused me to think deeply as to if I am on the right side of the issues when I say Terri should be able to pass away. I do know this, I still believe each case should be reviewed individiually. I do not want the legalities to side on the generalized destroying of the disabled in society. But people will all die, and by not signing her wishes in writing she gave by default, her spouse the right to do what he is doing. We must be a nation of laws and I do not appreciate the abuse of the legal system and multiple appeals. That is what the case is about.
Last thing, someone at the hospice demonstration: Please try to persuade those demonstrators who have voluntarily had someone lift them out of their wheelchairs and onto the concrete to get back in the wheelchairs. They could develop decubitus ulcers that may not heal and could kill them. That is what took out Christipher Reeves. If we care about life, let’s care about them too and not promote dangerous and expoitive demonstrations. Also, I saw some kids out there who were dark under the eyes and pale. One child appeared to have trouble keeping her eyes open while standing up. Some children are being arrested, and parents are allowing their kids to be taken to juvi hall where there are dangerous kids. Anyone worried about this parental neglect and the damage they are doing to their kids? They are teaching anarchy to the kids and not critical thinking. This is BEYOND SCARY, so say I.
Morphine is also used to help make a person with labored respirations a little easier, is is symptom management. The kind of drip described (very low dose) is not sufficient to “speed things along”, even in an opioid naive person. This questions tells me that you “get it”. You understand the pain mechanisms and the need for interaction (modulation) of the brain with the pain pathways.
…I read ALL the entries here. Recently, I’ve changed my view on the Schiavo ordeal, and I’m with SarahLynn (3/20/05). If Terry is breathing on her own, to withhold sustenance is murder. I find the irony in those who say “let her die.” Well, yes — LET her when her body does, in fact, die. Don’t murder her. If ANYONE directly related to her (parents) wishes to continue the vigil and help care for her, who are we to say they cannot and she must die NOW. I must agree with the person who commented: I fear we are not erring on the side of life. And wonder who among us would be harmed if we do so for Terry? At the risk of being ridiculed by those snobs who wrote in just to heckle others, is it any skin off our nose if Terry’s parents wish to continue things the way they are? If it were me, I would want my parents to have their wish; my husband could make a new life.
NP: You write :Morphine is also used to help make a person with labored respirations a little easier, is is symptom management.:
I understand this. But again, if this woman cannot feel pain because she is in PVS according to her husband and his attorney (who appallingly describes her as “beautiful”), what could possibly be the point? In particular I am reading this in virtually every current article re Terri’s condition:
Labored respirations are of course uncomfortable and debilitating to a sentient human being. To a “vegetable” with no capacity to experience pain and suffering, however, it would seem to me that those same labored respirations would only speed total organism failure.
I certainly have to agree with many of your comments as they jibe with my own experiences/education in the medical field (luckily I am a scientist rather than a care giver). My mother was the first adult patient to ever receive a shunt. She was for a period of time in a “vegetative” state due to multiple cerebral aneurisms and surgery to repair the damage. With the shunt she regained virtually everything that she had lost, including the ability to drive a car. Of course she had some long-term effects, but those were mostly associated with what we now know is drastic overmedication with dilantin and phenobarb.
In many ways I am appalled to find myself, after a lifetime of liberal feminism/activism, to find myself aligned with the “far right, holy-roller, right-to-life” crowd, as the media is portraying those who disagree with this mockery of justice.
I read the figures that state that so many % of the American people agree with the husband, etc. and wonder if that would truly be the case if the American public understood that Terry Schindler (odd that name would occur in this context) – Schiavo is not “brain dead” or “comatose” as many of the main stream media have described her – including that infamous poll. Those “polls” are quite nearly as statistically errant as the one that Costa keeps bugging us to participate in. And then too, what is “right” is not always either “legal” or popular.
I know – and I am sure you will confirm – that doctors are not always correct. From a scientific point of view, we can measure darned near everything going on with a human body – until you get to the brain. There we have no numbers, no hard-and-fast criteria, not a single parameter that I or anyone else can point to and say “this is what is happening here.” At best we have speculation.
Patients do die all the time from a huge number of causes, including medical error and a simple desire on the part of the patient to die today. Patients live every day too, against all the odds and even the very best of medical judgments. My concern is not this one particular patient but rather the precedent that her treatment by our society and our legal system sets for all of us.
No one can see inside Terri’s brain and truly determine whether she is “in there” or not. Studies show that PVS is misdiagnosed at least 43% of the time. She has had no therapy for years and apparently has undergone sensory deprivation to an extent that qualifies as torture and an international crime against humanity for the last five years or so. She has been in **hospice** – not a nursing home – for FIVE YEARS at taxpayer expense. (Her husband’s lawer when questioned recently about the money stated that Terri is “indigent” for the purposes of the hospice. That means Medicaid is paying for this – and has been paying for five years. Medicaid guidelines state that hospice care is for only those patients that are terminally ill and expected to die within 6 months. Terri Schindler-Schiavo’s human organism (with or without the presence of her “person” – since no one can determine that) is not and never has been terminally ill.
All of the Disabled Rights groups in the country are absolutely aghast at this – and rightly so. Even the Harvard Crimson, surely a liberal and left wing as it comes, is today carring an article by a disable Harvard student that could just as easily be in Terri’s bed rather than the Harvard Dorm. I was in that bed – and so was my mother. There is a huge part of me that would like to be in Florida laying down in the street along with the Not Dead Yet demonstrators. I lived through the Civil Rights movement and Vietnam and so I know that sometimes this kind of protest is required. There was a time not all that long ago when 80% of the American people agreed with segregation and 80% of the American people supported the war in Vietnam.
Those children at the demonstration are learning the single most valuable citizenship lesson they will ever learn given the state of education today – that human beings have rights, that Americans have the right to speak out openly for their beliefs and that to bring about change is painful. It is shocking to see a child arrested – but Florida seems to have a thing for that. Better the little boy taken away in handcuffs exercising his inalienable rights than the five year old arrested last week in Florida because of a tantrum over a few jelly beans. No, that isn’t child abuse. Freedom is a costly thing – and many who have paid the price so that we can continue to hold it dear have been under 18.
Never once in all my life have I been ashamed to be born an American until yesterday. As I watched the very last court and the governor refuse to overrule a single judge’s decision –
“it is the law”
“he followed the law”
“cruel and unusual punishment only applies to criminals”
“I cannot break the law”
I am reminded of nothing more than Neurenberg. The Nazi’s, too, claimed the force of law, procedural correctness, only following orders…….. and I fear the precipice that we are jumping over as Terri Schindler-Schiavo’s human body lies being starved and dehydrated to death on court order, despite the wishes of her entire family, sought by a man so very vindictive that he will not even leave her body intact for them to bury. Something smells.
A single thought – “Speak now, or forever hold your peace.”
I am not a medical professional. I am a registered Republican, and thought I was a conservative sort. Since the more recent onslaught of Schiavo controversy, I question many things about my political leanings and the motivavations of many others whom I once trusted.
Now he cuts to the chaste:
I find the behavior on the part of the parents and siblings of Terri Schiavo to be deplorable. Affording GIANT levels of sympathy and empathy for their terrible experience in losing a sister and child, I STILL will NEVER absolve them of the selfishness they exude in the poorly disguised framework of nurturing. Forgive them, for sure, but not excuse the SELF-serving nature and harm done to American society. Terri is NOT a piece of property. She does NOT belong to the Schindlers. She does NOT belong to her brother or sister. Arguably, she MIGHT still belong to her husband, Michael, despite the fact that he has (rather than live as a eunuch) coupled with a mate and born children since the time of Terri’s effective departure. Terri is an INDIVIDUAL. Beautiful she was, and beautiful her spirit will remain.
Her status:
Two words: Cortex liquified. That’s IT! Drama queens SHUT UP! Go to school, or the library, or somewhere and learn what it means when the cognitive part of someone’s brain disappears. When it is replaced with spinal fluid, it is OVER! Brains don’t regenerate. They never have, they quite likely never will. Having accepted that simple reality, one must consider the question of what might motivate people to FIGHT, PROTEST, LOBBY VIGOROUSLY, PLEAD, CRY, BEG, that this tragic yet beautiful woman be subjected to — I don’t know — perhaps ANOTHER 15 years of diapers and not being able to chew food, comb her own hair, talk, read, hear, touch, feel, smell, taste, etc.
Oh, MY bad! For a minute there, I thought this was about Terri. I forgot, I’m supposed to be thinking about Terri’s siblings and parents. It’s all about THEM, right? THEIR need to pseudo nurture, right? THEIR need to fulfill their OWN morbid desire to feel crucial to someone’s purpose, in the face of condemning them to year after year of flesh existence as little more than a slightly animated corpse.
I’ll close now because I’m losing my sense of decorum. I wish to honor Terri. I’ll continue to pray for her, and maybe someday ask her to pray for me. I do NOT desire to disparage her relatives. I cannot, however, refrain from candor concerning what has transpired over the last several weeks and months.
Love, peace, and a thoughtful Easter season to all
Alan
Answer to Robin:
Administration of Morphine or a like substitute is standard procedure in cases of withhold of life-support measures. The delivery of final anesethetic should never hinge on opinion regarding pain or discomfort where a patient/principal is unable to clarify pain or lack thereof. Controversy and conjecture don’t alter the standard procedure.
Alan
Terri is not aware of anything,the parts of her brain that control thought and emotions are gone. She is NOT the same as a Profoundly Retarded person. People with PMR have mental ages of an infant to a two year old (so skill levels vary) so they can’t learn much some learn how to walk say a few words, feed themselves,some can’t learn anything. However they still have emotions and even at the most affected level recognize familiar people etc .Terri is WAY beyond intellectually disabled. People who say letting Terri “die” is the slippery slope towards killing the profoundly disabled should note that PVC is not Profound Mental Retardation. I work with people who have Profound Mental Retardation and there is always “somebody home” Terri has been like she is for 15 years, they should have let her go then.
Kim Morgan,
I’m sorry, I cannot answer that one without being there. I suspect that NursePractitioner has answered that one correctly, but I don’t know. Again, I am a PhD in neuroscience and not an MD, but from my expereince in being in the hospital (I often consult on pain patients) the nurses generally handle the pain and respiratory management and do a FABULOUS job. As an aside, they do a FABULOUS job with everything. With our broken medical system we would be in a very sad place without all the wonderful people who do the nursing in this country. They are nearly all heroes, in the truest sense of the word.
Morphine is used for so many different things, and it is completely incorrect to assume morphine is being used for pain when you see it being used. Even if it was being used for “pain”, that doesn’t mean that the patient is in pain. Pain is a state, which we have to be told exists in the patient. Morphine inhibits the nociceptive neural pathways at multiple sites. It works in the periphery, on nociceptors themselves, in the spinal cord at the first synapse on the way to the brain, in the brainstem (where it probably has its biggest action) and in subcortical and likely even cortical areas. She could also be having some reflex action consistent with pain responses which the docs and nurses want to limit and, hence, is getting morphine. I would also just note that morphine is often used in pateints with limited or no consciousness just for the comfort of the caretakers. No one, especially care takers, likes to think that the patient could possibly be experiencing pain.
After all that speculation, I would just restate that Nursepractitioner is almost certainly correct, the morphine is being used for respiratory distress.
This case just scares me—not because of what happened to Terri, but because of how the pro-life movement took ahold of her case and is using it to redefine life. They could do that to anyone. They could just reach into your life and overule your wishes if they contradicted their agenda. Once Randall Terry became involved–and Michael Shindler indicates that they asked him to join their case—it was impossible to take the Shindlers seriously at all.
The Shindlers’ expressed desire to keep her alive no matter what is chilling. I don’t see how anyone can call over-ruling someone’s desires and dignity ‘love.’
Kim Morgan,
Forgot to mention one thing: Using morphine at the end of life is standard procedure in nearly all hospices. If there is one thing that all hospitals/hospices do, it is follow standard procedure. This helps avoid lawsuits, and I’m sure they know one is going to hit them on this one. Also, on CNN, LA Times and Reuters, the morpine administration is mentioned, but the only quote that it is for pain is coming from the Schindler’s attorney.
Ginmar – the right to life movement is not redefining life with this case. The usual definition of life is “where there is breath there is life.” On the contrary, the right/obligation to die movement is using this case to redefine life as being determined not by whether or not an organism breaths but whether or not they contribute to society.
Whoever said that we are not guaranteed freedom from religion is simply wrong. The first amendment has two clauses, which sometimes risk colliding with one another (a point made repeatedly by Justice O’Connor): the right not to have one’s religious practice abridged by state enactment, and a prohibition against state establishment of religion. Laws that protect religious practice sometimes teeter too close to violating the establishment clause. Laws that impose or that intend to impose religious doctrine clearly violate the establishment clause.
The founding colonies (Massachusetts and Virginia) did engage in persecution to one degree or another. The colonial experience, however, does not constitute the “founding” of our nation, which clearly separated church and state for reasons that are evident to anyone who knows anything about European history between 1521 and 1700 and even beyond. In any event, a number of colonies were explicitly founded on the principle of religious tolerance (Pennsylvania and Georgia), most practiced it, and Virginia began guaranteeing it in its own primary legal documents prior to the revoloutionary war.
I also do not agree that laws against murder etc. can be categorically attributed to “religious” values. Religious values — particularly with regard to nearly universal claims of what constitutes immoral action — arose out of human experience, and not necessarily vice versa. Obviously, for those who truly believe that all human experience is imbued by God the distinction hardly matters — but not everyone so believes, and yet even hard core atheists hold murder to be immoral. This is not a trump card to support overreaching religious claims to use the law to coerce non-believers. Religion is many and varied throughout history, and across geography, but core human values seem to transcend these differences. Even here, of course, one sees that “murder” has been defined quite differently — as in, murder is always considered to be wrong, but not all killing is deemed to be murder. So the human social structure has almost always accommodated exceptions related to various other social requirments — honor killing is not considered to be murder, for instance, or it is excused as if it were not.
None of this has anything to do directly with Terri Schiavo, of course. As my usually conservative husband has said to me, I don’t know enough to come to a fixed conclusion — but I do know that those who have lived this awful experience are more likely to come to a right resolution than Congress or the Bush brothers or the Florida legislature.
Robin:
1) To make things easier on people around her, by treating her labored breathing.
2) It’s standard procedure.
3) If they didn’t follow standard procedure and withheld morphine, many of the same critics now questioning the morphine would be going on and on about what MONSTERS the hospice workers are to deprive Terri of morphine.
Sigh… Robin, where ever you’re getting your information, it’s from people who aren’t being at all careful to get the facts right. Not a single poll has called her “brain dead” or “comatose.”
* The CBS poll (pdf file) described Terri’s condition like this: “Terri Schiavo has been in a persistent vegetative state since 1990.”
* The ABC poll (.pdf file) described Terri’s condition like this: “Schiavo suffered brain damage and has been on life support for 15 years.
Doctors say she has no consciousness and her condition is irreversible.”
* The March 1 FOX news poll described Terri’s condition like this: “Terri Schiavo has been in a so-called ‘persistent vegetative state’ since 1990.” ABC News/Washington Post said: “As you may know, a woman in Florida named Terri Schiavo suffered brain damage and has been on life support for 15 years. Doctors say she has no consciousness and her condition is irreversible.” CNN/USA Today: “Terri Schiavo, a Florida woman who has been in a persistent vegetative state since 1990, and whose parents and husband disagree over whether she should be kept alive…” Time Magazine: “Terri Schiavo has been in what doctors call a persistent vegetative or coma-like state for 15 years, with no higher brain activity.” (Source for all the quotes in this paragraph is pollingreport.com).
* A Florida poll didn’t even describe her condition, instead simply asking “Do you support the decision to remove Terri Schiavo’s feeding tube?”
I assume that your first sentence was a joke, not something you seriously believe. Of course, I entirely agree that what’s right isn’t always what’s popular or legal.
You’re talking utter nonsense. It’s not speculation that someone with flat EEGs and a mostly-missing cortex is not there; it’s a fact. You might as well say that we don’t know for sure that someone whose optical nerves are entirely missing is really blind.
Yes, we don’t know EVERYTHING about the brain; but we know what flat EEGs mean. And we know enough to be able to say that a basically absent cortex means no thought.
You’re using the exact same argument creationists use; since we don’t know absolutely everything, doesn’t that mean that all the basics are in doubt? It’s nonsense when they say it, and it’s nonsense when you say it.
The precedent is that, if a person hasn’t left behind a directive and a decision needs to be made, their spouse – the person they chose to be their closest relative should be the decision-maker. There is nothing wrong with that precedent.
It’s not about wanting Terri to die (I don’t really care if her body is kept alive or not). It’s about respecting the choices we know Terri made. Terri didn’t choose you to be her decision-maker, Robin, or me; she chose Michael. Shouldn’t her choice be respected?
First of all, “studies” don’t say that. A single study found that; virtually all other studies have found lower rates of misdiagnose, which is why those other studies have been totally ignored.
Second of all, I already explained why that study is not relevant to Terri’s case, in my post about the National Review.
So this Harvard student has been examined by 8 neurologists and found to be in a PVS; has CT scans showing a mostly missing cortex; and has flat EEGs? That’s amazing. Show me well-documented evidence of this, and I’ll change my views on Terri immediately.
Well, I don’t agree with the specifics – but I do agree that the children may be learning that peaceful demonstrations to fight for what you believe in are appropriate. So that’s cool.
I think this comparison is disgusting, and trivializes the holocaust.
Michael is part of Terri’s family. He’s the most important part: The part that Terri herself chose.
And for someone who was just a few moments ago claiming that we can’t know anything for certain, your mind-reading powers have suddenly gotten amazingly good. Thousands of families choose cremation every year; yet you now say this is a sign of vindictiveness. That’s ridiculous.
There’s no reason at all to assume that you know ANYTHING about what’s going on in Michael’s mind; that you think you know just demonstrates that you’re not willing to think about this case fairly, and are instead just looking for reasons to accuse people you disagree with of being evil monsters.
I don’t know if Michael is evil or not; it’s possible he is, but it’s also possible that he’s just an ordinary person, not perfect, trying to do right for Terri while thousands of strangers like you, who never knew Terri, look for any excuse to condemn him. It’s as if you have no mercy at all in your heart for anyone who disagrees with your views; Michael disagrees with you, therefore he’s EVIL That’s sad.
(And by the way, I also strongly disagree with the people condemning Terri’s parents – although they haven’t been slandered nearly as much as your side has slandered Michael.)
Another: “Don’t condemn someone until you’ve walked a mile in their shoes.”
Why is everyone talking about religious beliefs? The question here is Terri’s beliefs. According to her husband she did not want to live this way, that’s it, the end. These people that support the parents of Terri say they love her, they love her so much they would go against her wishes and keep her in this state of being forever. They say right-to-live but what about her right-to-die. There is a difference between living and just surviving. Terri believed surviving wasn’t good enough and we as individuals who can make up our own minds should respect that and let her go with peace and dignity.
Yes, walk a mile in Michael Schiavo’s shoes. I am not sure that I have it in me to have been nearly 1/10 as good as he was to his wife during her incapacity. I will say that I have never been tested as he has been, and I can think of only one situation among my own nearest and dearest that was in any way comparable. It lasted six years, involved a small child, whose grandfather, my uncle, a devout Roman Catholic, finally told my mother that it really would be better if his parents to let him die. I am continually astonished at the lack of empathy and charity some people have displayed for Michael Schiavo.
And yes, it isn’t about my religious values or anyone else’s, but Terri’s. I didn’t mean to suggest otherwise. I was just responding to some general comments made by others that appeared to suggest that our founding documents or principles make it acceptable to impose consensus or majority religious values on “dissident” or non-believers.
I am a social conservative who regularly reads this site to expose myself to opposing points of view. I see a salutary effect emerging from this case, viz., there will be many states that will soon disallow the disconnecting of feeding/water tubes unless there are written instructions to the contrary. Thus, the default position will be to feed and hydrate, unless the patient has a legally-executed set of written instructions stating otherwise. This change will re-define what the term “clear and convincing” means, giving no credence to oral declarations. Such changes are already making their way through multiple state legislatures. Once these changes are enacted, the current Schiavo scenario, based on a “recovered memory” by a spouse, will not play out again. Since liberals have been arguing for the primacy of state law on these matters, there should be no principled opposition from those on the left, should there?
In case anyone is interested in learning more about PVS here are links to a 2 part paper on PVS diagnosis and prognosis from the Multi Society Task Force on PVS. It was published in 1994 in The New England Journal of Medicine. Its somehwat old, for medical lit standards, but no one has felt the need to substantially update it so it must be useful currently:
Part one
Part two
I’m not sure if this is open access, but you can always go to your local library and download and read.
In this study, out of more than 150 patients in PVS for 12 months with a nontraumatic brain injury (this is what Terri has by their definition) there was not a single instance of recovery, and that is after only 12 months, not 15 years. Outside of their study they also reviewed the literature and found that only 5 instances of recovery with PVS have occurred (and been published). The longest duration was 36 months.
Several studies have also been conducted on neuroimaging for pain processing in PVS patients. Several have found that areas in the cortex, associated with pain in normal controls, are activated. This, of course, was dependent on those cortical areas being intact. They also found that while some areas are active, the associative areas of the cortex that are involved in the affect (wanting to escape from pain, discomfort, etc.) are not activated. They concluded that this was likely a result of lack of connectivity from the sensory cortex to these areas. Importantly, an activation of the anterior cingulate cortex (the only area that is common to nearly all types and aspects of pain) was not observed in these patients in at least 2 studies (there may be more but I haven’t found them). Of course, absence of evidence is not evidence of absence, but all available data would suggest it is not active.
This case has really opened my eyes to how little the general public knows about the biology of the brain. I know we all live in an age where we work too much and have little time for extra learning, but that thing in your head called the brain is the reason you are who you are and we should all have at least a general working knowledge of what it is and how it works. I know I am preaching to the choir on this blog, but I bet we’ve all seen what is out there. The National Institute of Health has recently implemented its policy to make all research published through US tax payer dollars (that’s about 95% of what is published in the world every year) openly available and free to the public. Publishers have grudgingly gone along with this and as we speak articles that are more than 1 yr old are being converted to open access. It will likely stay at this 1 yr rule for the time being, but it will change as publishers start to convert to charging researchers page charges. So go to http://www.pubmed.com and learn away.
One more thing, in search through pubmed for PVS and opioids (morphine is an opioid) I pull up a bunch of law articles that I cannot access from my institution. This being the case, though, I assume the morphine (like half the things that go on in a hospital or hospice) is being done for legal reasons.
First, thanks to Ampersand for providing this forum!! This is the most sensible discussion of the issue I’ve been able to find on the internet.
As a Roman Catholic, and as someone who is very much pro-life and anti-abortion, my first impulse in this discussion was to sympathize with Terri’s parents’ position.
But I finally figured it out: this is not all about me. Or my opinions in a doubtful case. This is all about Terri, and her opinions.
As an American, and as a Christian, I am bound to respect the decisions someone else makes about their own lives. As an attorney, I have promised to respect the decisions of the court. That court said, after hearing volumes of evidence, that Terri would not have wanted to be sustained in this way under these conditions. That finding was upheld upon (repeated) appeal.
Those who disagree should first take this up with Terri, or at least confront the fact that they propose to go against Terri’s wishes. Blaming her husband doesn’t work. The central question for such people is, “why and by what authority would you contradict Terri’s wishes in this matter?”
It is too often forgotten that those who advocate state action to override individual decisions may find, one day, that the state, instead of prohibiting abortions (as they may desire) now requires them, as in China; that the state which interferes to keep Terri’s body alive may one day, by that same reasoning, intervene to “pull the plug” against the patient’s wishes.
There are some decisions that we do not want the federal government – or any government – to make for us.
I noticed another bit of false information purveyed above — that life is defined by the ability to breathe. “Brain death” occurs in the presence of a beating heart and the ability to breathe. Brain death has been the standard for determining when death occurs for the better part of the last 25 years. Otherwise, how do you think organ donation would have become possible?
Thank you Susan! I entirely agree with this. And than you for the kind words about “Alas,” as well.
Thanks as well to Dr. Ted, NursePracticioner, Robin, and so many other people who have contributed so well to this thread. I can’t respond to everyone who posts on “Alas,” but I try to read every post, and I’m thankful people post here.
LMA, I am not sure that the state can require the presence of a written document, although I do think that the state can require a higher standard, or the testimony of individuals who are free of conflict of interest. This was the subject of the Cruzan Supreme Court decision (in fact it was the only issue presented in the case — what standard of proof the state could require the family to meet). Certainly, Florida could have passed such a statute in the intervening seven years since Michael Schiavo first asked permission to withdraw life support. I have often wondered why it hasn’t. Given the public reaction to congressional intervention, I am not so sure states will be eager to become more intrusive in this area.
I would also like to say that caretakers do have some options. When my father was receiving hospice care at home, and my mother realized that he might be dying, she was told over the phone not to call an ambulance unless my father had signed a DNR — otherwise, she would be facing weeks of aggressive treatment in the confines of a hospital, with death no more than several months away at the most. The problem with a purported one size fits all solution is that these situations occur across a wide spectrum of diagnosis, age, duration of incapacity, proffered medical intervention, financial resources, and so on. Should my mother have risked her house so that my uninsured dad could live on on a hospital for a couple of more weeks with his diagnosis of terminal cancer?
[Crossposted with Barbara’s answer, which was much better than mine.]
LMA wrote:
LMA, I have no major objection to such a law (I have philosophical disagreements with it, which I’ve already described, but I don’t consider it an issue of major importance), and wouldn’t object to a law such as what you describe being used in future cases.
I think the law you describe would have major disadvantages, in that it would keep many people alive against their wishes (polls show that the vast majority of Americans – and even the majority of evangelicals – would not want to be kept alive if they were in Terri Schiavo’s condition). But balanced against that is the major advantage of relieving family members of the burden of deciding, and the advantage of providing a clearer-cut rule making future lawsuits less likely.
This is a tough case, with no easy answers all around. I look at it this way. When people say they don’t want to be kept alive using extraordinary medical means, they usually mean they don’t want to be kept alive in a perpetual state of misery either through pain, or being permanently stuck in a bed being unable to move and relying on machines to keep you alive. But in this case, it is simply a feeding tube, nothing too extraordinary and Terri does not seem to be in any discomfort. In fact, if she is PVS, she is ALREADY GONE. So what does it matter if she is hooked up to a feeding tube and kept around for the benefity of her family’s happiness? They seem to need it, and Terri is essentially dead anyway. And if she wasn’t essentially dead, we wouldn’t be having this argument in the first place.
The only shame in it is that millions of dollars are being spent on medical care and legal bills on someone whose quality of life is nonexistant, that could be spent on people who really need it…
First of all, you seem to be ignoring that Michael Schiavo is also part of Terri’s family. It seems to be important to his happniness that he follow Terri’s wishes, as best as he can. Why is it that you ignore this when you talk about “her family’s happiness”?
The fact is, the one choice we know for a fact Terri made is the choice to make Michael her closest relative, and hence her decision-maker. I don’t care if Terri’s body lives or dies; I do care that Terry’s choices be respected. Terri didn’t choose to put her fate, if she couldn’t decide for herself, in her parents’ hands; she chose to put it in Michael’s. That choice should be respected.
No David Helton today?
[I banned David from posting on this site -Ampersand]
Our ultimate act of respect for Terri, both who she was and who she is now, is to treat her as a human being, not a brainless body, and to follow her own wishes.
Alright Amp !!
Thanks to Dr. Ted and Nurse for info. and I agree. I took a “Devil’s Advocate”? position a yr ago. I have no religious conviction + searched legal, medical, etc basis for both sides.
I agree that the care for my incontinent, total care and partially demented family members, (with children, finishing my masters, running a business) is a chore. A glad one. Final hospital care is probable.
While Dad was in rehab, his roommate suffered a horrific death that terrified us, the patients and the nurses. In a final coma, beyond all recovery, his family kept him alive. Piece by piece, his legs shortened, his arms disappeared as his limbs were amputated. His brain gone, the body thrashed about. What was the family hoping for? This was a diseased body, a wasted mind, dying in agony.
Do we find the same with Schiavo? She is PVS and already gone? She is not PVS, speaks, therefore should be maintained? The medical analysis has been reviewed, studied, exhausted. Still, a desicion for the guardian.
Finally, the husband did not make the determination. He had a difficult decision. (Read appellate hearings.) He turned to the courts for help. Courts provided an appointed surrogate, independent analysis to make a difficult decision. The opinion was given. Several times. Perhaps, I thought, this was a court fluke lacking evidence, opportunity, or a narrow quesiton by the judge? Nope. Sorry. Hearing after hearing, argued at great length over the years.
Damned if he does, damned if he doesn’t. Yes, there are many suspicious behaviors: on both sides. Trash is often thrown in adversarial positions.
On the social. While the repercussion from the Schiavo case worries me, the other extreme frightens me. The neighbor next door is home dying with painful bone cancer, 2 mths left. Her sisters won’t let her have pain meds because they don’t want her to become an “addict”?. This rips me up. I do not want outsiders stepping into my parents bedroom.
Social movements have pushed gov. further into medicine. Treament is withheld due to social attitudes. When people in pain have no options and consider suicide, what is religiously correct? I suffer extreme migraines. Which is best: a treated and functional person or an incapacitated person locked in a dark room for 5 days wishing to die? Every week I ponder going to Mexico for risky treatment. Society grows at odds with our medicine and some social mode should not represent my health care needs.
Sorry for the length. Thanks for the facts and not slamming my questions. I have reached my personal opinion.
Let her go.
I’m hoping that after a period of healing, everyone involved will forget those horrible videos and remember the alive, vital person she was before her heart stopped.
Many court proceedings in this case have dealt with issues of law. However, I believe that issues of fact (is Ms. Schiavo truly in a PVS; what are her chances of recovery; what of her purported assertion that “I would not want to live this way…”) have been adjudicated by only one person, Judge George Greer. It seems that in a situation where a person will have her life ended by the actions of others, that we ought not rely on the determination of just one judge. There should have been judicial review of the facts of the case as well.
Well, LMA, there is almost always judicial review of the facts, but the review is usually much more truncated than review of the law. As in, issues of law are usually subject to so-called de novo review, while issues of fact are subject to an abuse of discretion or arbitrary and capricious standard. The biggest issue of all in this case was the credibility of the witnesses, which is very difficult to judge by reading a transcript, hence, deference is almost always shown to the trial judge on that score. Even in capital cases there is rarely a second trial. I am not suggesting that it would ever be amiss or wrong, but not only is it not the norm, but there also exist policy reasons for not making such second bites at the apple a routine occurrence — for one thing, it introduces the possibility of gamesmanship and other mischiefs that could make the resolution even less, not more, satisfactory. No easy answers.
Kim Morgan,
You have mentioned pain and suffering several times on this post so I have to add my 2 cents. Coming up with new drugs is a difficult process, which takes years of research followed by years of safety tests, etc.. I myself study pain, I study the molecules that cause pain and how they change in models of pain. All of us in the field feel terrible that we seem to fail over and over again in getting new treatments out. If the public only knew how many drugs had seemed to be the magic bullet only to fail miserably at the last moment. I could list enough to cover my fingers and toes just off the top of my head. So what are we left with, basically opioids and NSAIDs and they often don’t help the biggest sufferers. The only instance I know of involving government interference in pain meds is on marijuana. This can be bypassed, and has, by synthetics (marinol is the drug) so the whole point is somewhat moot.
There are, however, a number of new small molecules against new targets that seem very promising. One in particular is for bone cancer pain. This raises the big question though, should we keep people alive, who want to end their suffering, just becasue oneday there might be a treatment? This is such a difficult question and I personally don’t think the government should have anything to do with answering it. This is why this case gets under my skin so much. She expressed her wishes to her husband, and others, and they are trying to dignify those wishes. Hopefully I will never find myself in this situation, but if I do, my wife knows what I want and we have it writing, just in case someone doesn’t believe her. I beleive that, given time, medical science can cure just about anything, but that is just the thing, it takes time, and lots of it. I have seen the suffering of intractable pain patients first hand. It is truly miserable. Moreover, since we cannot help them end their suffering in a dignified setting, if that is what they want, they often end up attempting suicide, and FAILING, making the whole situation much, much worse. Now I’m no advocate for assisted suicide in non-terminal cases, but its something that we have to consider or at least debate reasonably. As it stands today we can keep virtually anyone alive, for extended periods of time when they are suffering horribly. IF they want to fight, good for them and I hope they win, but there almost always comes a time when they are broken by the misery. Why not help them go peacefully, which we CAN do, and let them have some peace before death.
LMA, you are simply not correct. The judge has not decided that she is PVS. Neurologist after neuroligist has and the judge has agreed. Go lookup the articles I posted to see her chances of recovery. IF she recovers, she would be THE FIRST in that situation! She is also not having her life ended by others. In fact, her life has been preserved by others and they are now allowing nature to take its course. Why? Becasue that is what she said she wanted, and the courts have agreed that substantial evidence has been put forth that that was the case.
Oh yeah… Many thanks to AMP for providing this forum. It has been truly informative for me, in more ways than one. This is the first place I have ever “blogged” and I am now planning on trying to get one going for my fellow pain neuroscientists to discuss findings and methods when we are not together at conferences.
Susan said:
But I finally figured it out: this is not all about me. Or my opinions in a doubtful case. This is all about Terri, and her opinions.
I say:
BRAVO, Susan! Exquisitely summarized.
Alan
Having read the many very cogent comments here, I just have a couple of thoughts to offer:
About feeding tubes: I don’t think anyone on the right-to-die side of the question (where I would place myself) is equating having a feeding tube with being in PVS or MCS or having an inadequate quality of life. As several people have noted, lots of people have feeding tubes, for varying lengths of time, for lots of reasons. From personal experience I can say that inserting a feeding tube is a fairly simple medical procedure, and feeding someone by tube is also very simple and easy to do. I know this because my son has had a feeding tube for the last seven years, during which time he has also been incontinent and unable to walk on his own. With no medical background, I’ve fed him by tube every day, and have also trained several people (some of them teenagers) to do it.
About Terri Schiavo: As I see it, all the wrangling is over two questions: is TS in a PVS, MCS or other state where she cannot enjoy or participate in life in any meaningful sense; if so, would she wish to continue to exist in such a state? The first question has been answered “yes” by every competent, qualified and unbiased doctor who has reviewed the relevant evidence; the second has been answered “no” by Judge Greer, who presided over the original trial, and whose decision has been upheld by every judge who reviewed it.
(I find it interesting that none of the major news outlets such as CNN has bothered to explain that Terri has no cerebral cortex to speak of, and what that means — or if they have, I haven’t seen it. They say that doctors have no hope for her recovery, but don’t say why, which I think gives many people the impression that the doctors are making arbitrary judgments. I don’t know if this is because they don’t want to stress the presumed minuscule attention span of the average American, or if they don’t want to risk appearing to take sides.)
I can sympathize with the slippery-slope argument and with the “err on the side of life” argument; but the truth (again, as determined by numerous doctors and legal proceedings) is that the person who was Terri no longer inhabits her body. Having a child who is severely disabled, both mentally and physically, I am all for the rights of the disabled; but there are any number of differences between my son and Terri. He speaks meaningfully; with a vocabulary of perhaps 200 words, he can and does express his wishes (“I don’t want a bath!”); he experiences joy (“Daddy’s home!”) and sadness and is clearly deeply attached to his family and other caregivers. In short, he is “in there,” and he enjoys life. As long as that remains true, the tube stays.
My heart goes out to anyone who has to make these heartrending life-and-death decisions.
I found this story interesting.
I think it is important to note, as well, that it is from Fox News, who has been accused ( right or wrong ) of being right wing.
http://www.foxnews.com/story/0,2933,151662,00.html
I am posing this to anyone who can offer an informed legal insight as to standard-of-proof. The purported Schiavo oral declaration re her wish to discontinue life support was judged to be “clear and convincing”, whereas the purported Cruzan oral declaration was judged to be otherwise.
What was the essential difference between these two cases? Was it state law (the standard-of-proof required by Florida vs. that required by Missouri)? Was it the credibility of the witnesses in each case? Or was it some other factor?
First of all, Terrie should be kept alive, unless there is a living will, Even “IF” she must be “put to death”, (and that is exactly what they are doing to her), they should give her something to speed up the process. Even Murderers get put to death humanely, Not STARVED TO DEATH!
LMA, the standard of review appears to be abuse of discretion. There are so many decisions that it’s hard to know which should be viewed as definitive, but each of the following links talks about the standard of review used by the court of appeals for at least one of Judge Greer’s decisions. The first appears to be quoting from the second, but there are lots of cites for you to follow. I think the federal standard is even somewhat lower for overturning trial findings of fact, in fact, I’m pretty sure it’s “clearly erroneous.” These standards are obviously just words — I worked for an appellate judge, and I like to believe that most judges are like him — they do a much more searching review when the stakes are very high, even if they continue to recite the magic words. Certainly, we’d spend days on any capital or felony criminal conviction, maybe less time on civil damage judgments.
The Schindlers asked for de novo review of the factual findings, which would really be almost impossible to do at the appellate level because of the lack of live witnesses, thought the court apparently did review available videotapes. Hope this is what you were looking for.
First link (pdf file)
Second link (pdf file)
Here, LMA, I found a more complete resource for you at the following link. It’s a timeline of all the cases with links to many.
And as to comparisons with Cruzan, basically, it’s my understanding that the Cruzan family had no evidence one way or the other of what Nancy Cruzan would have wanted and proceeded on the theory that Missouri’s standard was impermissibly high, a longshot if there ever was one. After the Supreme Court decision, Nancy’s friends, some from college, contacted the family to inform them of their own discussions with Nancy on preservation or withdrawal of life support, and a second hearing was held with their testimony, which was held to establish by clear and convincing evidence that Nancy would not have wanted to be maintained in a PVS state.
The evidence presented re Terri Schiavo came from three witnesses: her husband, her brother-in-law and his wife, who had indisputably been a close friend of Terri’s. The evidence was based on conversations that they had in specific settings — such as, Terri said that she thought a friend who had discontinued life support from her hopelessly ill infant had done the right thing, and so on.
Michael’s suit re Terri having bulimia was unsuccessful–remnants of Stella Nichols in the Tylenol (or was it sudafed?)poisoning.
I don’t care for Tom DeLay, but there’s a huge difference between withholding treatment for multi-organ failure and withholding food and water on a person who’s vital systems are functioning.
My cat doesn’t have much of a brain, but I’d go to jail for starving him. Now Terri has to suffer a lingering death.
M. Schiavo’s attorney says people routinely receive 100 to 200 mg. of morphine for pain relief. If this is an example of his knowledge base, he’d kill us all with those kind of doses. Maybe he’s subconsciously expressing his client’s wishes. The heat’s on buddy–let’s see those bone scans and listen to co-workers and nurses testimony!
Dear Robert Amburn,
Your assertions couldn’t be more wrong.
Terri’s wishes about end-of-life govern here, not yours, not mine, not anyone else’s.
Terri is NOT being “put to death.” HER wishes regarding artificially prolonging her existence are FINALLY being honored.
Virtually ALL credible medical experts agree that withhold of a feeding tube for someone in Terri’s condition is INDEED a humane end-of-life method and process. Mostly, it is religious zealots that clamor in uninformed disagreement.
Finally, Terri “feels” NOTHING in the way human beings understand “feeling.” The part of her brain that regulates virtually ALL sensation and perception is GONE. God, Mother Nature, fate or whatever terms you prefer, has effectively removed her cerebral cortex. GONE! Spinal fluid now resides where her cognitive brain once lived. In recorded history, NO ONE has EVER recovered (regained “feeling” or sensibilities) from Terri’s condition.
Amp, help us out here. My browser shows a block quote beginning at Lori’s message which begins “…I read ALL the entries here” and goes on unremittingly for 42 entries thereafter, including this one.
I know. I should go back to Explorer. Yuck.
No, don’t do that! IE sucks! If you must switch browsers, switch to Firefox – that’s what I use, and these block quote errors are invisible to me.
(By the way, what browser are you using?)
What you should do is, don’t be shy about telling me when there’s an open tag that needs to be closed, even if it’s pretty new. I’m very eager to know about them. I think I’ve fixed the one you were talking about, but if it still appears messed up, let me know.
All good, Amp, you’re a prince. Looks great now!
I’m rushing off to download Firefox, which everyone has been urging me to do for months. :)
More than one person on this thread has said that this discussion has clarified their own thoughts for them, and this is the most valuable service of all. Thanks again!
AMP – re the polls, first I know that several of the mainstream media have used the term “coma” when describing Terri’s condition in both polls and articles because I have participated in several of those polls and read virtually everything they are putting out. In fact, at one site (CBS or ABC, unfortunately it was days ago and I don’t recall which, the question was written in such a confusing manner that I went back after discovering on the Thanks page that I had voted incorrectly and voted correctly twice LOL.
I’m not the only one who has noticed that point – see here:
http://www.renewamerica.us/columns/shroder/050326 – a couple inches from the top
Re was I joking about the poll – nope. Any poll (either the one advertised above or all the various “take our poll” the media are putting out) structured in this manner has no scientific or statistical validity. First, all the people taking the poll are self-selected rather than random. Second, they all have some underlying interest in the outcome. For the purposes of science or statistical analysis (including marketing BTW) these polls are invalid.
In the specific case of the poll above in this thread, only two questions are asked – the blog is gone so I cannot quote them directly but one was the participants thoughts re Terri and the other political affiliation, both in limited multiple choice format. Apart from the collection problems above, this particular poll is very poorly designed from the get-go because it presupposes that political affiliation is *the* deciding factor that influences participants’ choice to the question re Terri. A correctly designed set of questions would have been far broader and more numerous (20 or so is the norm) to allow other factors such as religious affiliation, age, education, sex and attitudes about other events to be explored. Only through a wide data analysis can you determine the correlation between various factors and the attitude towards Terri question. For those who don’t know, correlation is a statistical calculation that expresses the degree of relatedness between factors.
Re Tom Delay, as far as I am concerned the man is a HERO in this. He has walked in the shoes of Terri’s family, as have I and numerous others. He has had to see his loved one lay in that bed and suffer those injuries and make that darned near impossible decision and then live with the results.
See, the difference here is that Tom Delay and his family did not **start** treatment for what they knew would likely be an impossible situation to correct. His experience does not make him a hypocrite, it gives him the right, earned by both position and hard experience, to say “This is WRONG.”
If Michael Schiavo was so sure in 1990 that Terri Schindler-Schiavo would not want to live on a feeding tube with brain damage, then he should have made that decsision 15 years ago. No one placed that feeding tube without his permission you know. This is in no way a new situation and it was not a new situation when he first brought suit to remove the feeding tube back in 1997. Barring the brain damage – disputed – Terri was at the time of removal an otherwise healthy human being and has been right along.
He knew, when he stated to the malpractice court way back when, that Terri would live a normal life-span, barring unforseen circumstance. He claimed to want to provide for her throughout that lifetime. That is why he was given such a large award. If he can then change his mind, well who is to say that Terri has not in the intervening 15 years changed her mind about whatever off-hand comments she made when barely out of her teens. You never know what kind of “disabilities” you will still want to live with until you are having to live with them.
Brad Says:
March 28th, 2005 at 1:16 pm
I found this story interesting.
I think it is important to note, as well, that it is from Fox News, who has been accused ( right or wrong ) of being right wing.
http://www.foxnews.com/story/0,2933,151662,00.html
Yes, that is a pretty interesting article. Fox is not unviversally right wing. It just isn’t universally left wing. They seem to try harder than most to present both sides of an issue much of the time.
Way more importantly to me as a medical professional, is the testimony of those many nurses and care-givers. A doctor might spend 15 minutes with a patient – 45 to do a very thorough exam. The nurses and nursing assistants are there day after day and they are all – RN and CNA – trained to notice things. They are the frontline when problems occur. Many is the patient that would die save for a sharp-eyed nurse or CNA. They tell a very different story. Even if you want to discount this one or that one, they can’t all be lying and some of them have lost their jobs over this. BTW, an RN that falsified an Affidavit given in support of a legal case would lose her license.
What happens if TS’s parents are granted the chance to force feed Terri down her throat and she chokes on the food, and dies. Will the parent’s be convicted of murder?
What did Terri want? All the medical analysis is irrelevant unless Terri actually asked to be starved and dehydrated to death. That leaves the legal analysis.
Watch the donut, not the hole.
To Barbara,
Thank you for the text citations. As I struggle through these files (lawyerly jargon is not my forte), I am attempting to find a “bright line” that will assure me that the criteria governing a decision to take a human life will remain fixed, rather than be incrementally moved to exclude from protection those who might fall under some future definition of “a life not worth living”. Are there any such bright lines in current law? Is it possible to draw such lines?
Thanks for this site. I was watching Aaron Brown tonight and my wife and I got into the discussion after watching Terry’s brother talk about how he and his family was praying for a miracle. I’m a left leaning independent who you might say is a swing voter, in short I want to know both sides of every story before coming to any conclusion. The postings on this site have helped enormously. However, Terry’s brother mentioned doctor reports that contradicted those of Michael Shiavo’s paid MD reports. Can anyone comment on those? Do we only have the one cat scan slice pictured at the top of the blog to work from or are there other pictures.
One other thing I can’t quite fathom. If I felt that one of my daughters was being held in a hospice and starved and dehydrated to death and conscious of it they would have to drag me away in chains and lock me away from attempting to save her. It makes me question the Shindler’s motives.
LMA,
The decision to “take a human life” in this situation was not the issue in this case. There are indeed important questions around whether someone whose life is “not worth living” (according to someone else) might or might not be deprived of life support, or even, God forbid, be affirmatively murdered. However, since none of that was discussed in Terri’s case (such considerations were irrelevant), you will have to look elsewhere for the answer to that kind of question.
To summarize. It has long been the law in the English-speaking countries, almost back to the Conquerer, that it is the right of every person to refuse medical treatment, and indeed, in the old days, subjecting a competent adult to unwanted medical treatment was deemed a battery, and hence a crime.
This remains the law as it has been of old, now styled the “Constitutional right to privacy,” which makes it sound newer than it is. It is of immemorial age in this culture.
But as medicine advanced, it was found that most of the tough questions in this area concern people who are in such bad shape that we can’t ask them their opinion any more. However, no matter how bad a shape you are in, you retain your right to refuse medical treatment. Thus we have now a written document you can give us beforehand, detailing your preferences, or, failing that, oral evidence as to your opinion is admissible, or, failing even that, you can appoint a surrogate, someone to make the decision for you in such a situation, or the law may appoint one for you.
Terri’s case falls in the second category. Although she had not written anything down, the trial court found by “clear and convincing evidence” (the standard for such matters required by Florida law) that she had expressed a desire before several witnesses not to be kept alive by medical intervention should she ever be in such a state as she is in. That her parents do not agree with her decision is unremarkable. I’ve done a great many things in my life with which my parents did not agree.
A surgically implated feeding tube is unquestionably medical intervention. (Surgery, get it?) Therefore, Terri had and has the right, now called “Constitutional” but really much older than that, to refuse that treatment, and the court found that she did so.
Therefore, while your question is of great importance, it has nothing to do with this case. This case addresses only the question of what the choice of the patient is, and whether we will respect that choice or seek to override it.
Anyone interested in a detailed discussion of the law in this case should consult Abstract Appeal.
IMA says :
I am attempting to find a “bright line”? that will assure me that the criteria governing a decision to take a human life will remain fixed, rather than be incrementally moved to exclude from protection those who might fall under some future definition of “a life not worth living”?. Are there any such bright lines in current law? Is it possible to draw such lines?
We had just better find a way, hadn’t we? Or we are each and every one of us next. Quality of life should NEVER be the deciding factor for the state in deciding whether an indiviual lives or dies! Otherwise we can all line up at the door – too old, too poor, too sick, homeless, jobless – not “worthy.” NOT IN MY AMERICA!
Even Jeb Bush KNOWS this is dead wrong – here’s what he is saying tonight:
QUOTE:
“After passions subside,” Bush said, the Legislature should take another look at end-of-life issues.
“We need to review how we go about defining a persistent vegetative state,” he said. “From what I can tell, when people are in pain they’re not in a persistent vegetative state. So, if that’s the case, why would they be given morphine? It brings up questions.”
http://www.bradenton.com/mld/bradenton/news/nation/11252865.htm
Bright spot? Sure – the Disabled Rights and Women’s Rights groups – normally left-leaning liberals – are standing besid the right-leaning “religious” groups on this one. ABC and CBS have got it dead wrong. And Mr. Bush has got a BIG problem.
Hey, Robin,
I agree with you about FOX news. They almost always present both sides of an issue.
I have to ask you, Robin, what exactly would you need to hear from a nurse or caregiver that would compromise your understanding that Terri’s cerebral cortex is GONE?
I watched on Larry King Live (I think it was LKL)a couple of Terri’s nurses/caregivers stating that Terri clearly and emphatically expresses her discomfort during monthly menses — discomfort that is a physical IMPOSSIBILITY without the cortical brain intact. These two women struggled to cogently convey exactly HOW Terri went about such a supernatural complaint. Frankly, I was left with the impression that they were more interested in conveying the fact that Terri EXPERIENCED monthly menstruation, period.
My point is this: Because someone is certified as a nurse or caregiver, or because they put in many hours with a given patient, does not necessarily heighten their credibility nor certify their dispassionate judgment. In fact, emotional and/or gender-empathetic bonding can frequently cloud judgment and undermine objectivity. Not to mention religious zealotry.
As a medical professional, I’m confident you know what a liquefied cortex means. It means that any number of random “observations” of Terri Schiavo “expressing” ANYTHING after nearly 15 years in her persistent vegetative state is either nonsense or cruelty on the part of the supposed observer.
If Michael Schiavo was so sure in 1990 that Terri Schindler-Schiavo would not want to live on a feeding tube with brain damage, then he should have made that decsision 15 years ago.
Yes, but. Hindsight is always 20/20. Michael apparently hoped that Terri might improve substantially with treatment, and several courses of therapy were tried. One can hardly blame him for clinging to hope, and for attempting every avenue.
This guy really can’t win in some peoples’ books. If he now recognizes that Terri will never improve, and says that she expressed a desire not to be kept alive under those circumstances, he’s a monster. If he took some years to come to that conclusion, and hung onto hope, he’s a fool, and a knave besides.
Although she had not written anything down
Which is why everybody’s in this mess.
Mythago, even if she had written it down, her parents have testified that they would still be fighting to keep the tube in.
Here’s a site where one poster writes about her experience with using a feeding tube for her very conscious, adopted son:
new blog
“…Let me give my example.
We have a son who was a “shaken baby” when we adopted him and he has multiple and severe disabilities and brain damage. He lives at home with the family, he is a highly valued and deeply loved member of the family. He attends school and he gets his medical care through one of the children’s hospitals consistently ranked best in the world.
He receives all of his nutrition and hydration through a feeding tube, a special kind called a “G-J” tube. The tube needs to be changed (a medical procedure done in the hospital) every few months. Every time it is changed he suffers at least a week to two weeks of “adjustment period” during which he is very sick, vomiting, pain, distress, discomfort, etc.
Doctors/scientists have come up with a “formula” for the amount of food (quantity) and fluids he should take in over a 24 hour period for optimum nutrition and hydration. If he takes in this amount, he is well-nourished and well hydrated and all his electrolytes are at proper levels.
However, if he takes in this amount of food, his other systems cannot process it well. He becomes severely constipated. He has extreme pain and discomfort. He vomits. Then, he gets rashes and skin break down from the vomit, he risks aspirating and getting pneumonia (which has happened to him more than once) and other complications. THis is true no matter what we have tried, in consultation and under the supervision of the best hospital and some of the best doctors in the world. It doesn’t matter if we change the type of food, the rate at which he takes it in, or any other potential variables etc. His system just cannot handle it and he is in pain and miserable.
However, if we give him less than this amount, he is peaceful, relaxed, interactive and happy. He is comfortable. He has some joy and pleasure in his life. But at the same time, if he is not getting this full amount of feeding and water, he is very slowly getting malnourished and dehydrated. His electrolytes get out of whack.
While we are confident that we will NEVER “turn him off” his feeding tube – That is not a consideration or option – every single day we are faced with decisions about whether or not to give him the full recommended amount of food and water and watch him suffer in pain and discomfort, or give him less and allow him a day of pleasure, joy and comfort. EVERY SINGLE DAY we have to make these decisions.
THese are the types of decisions that face people caring for a child or a sibling or a parent or a spouse with multiple, complex, multi-system disabilties. THey are rarely simple or straightforward or one-size fits all, or make-it-(the decision)-once-and-be-done-with-it.
My point is that sometimes you can have complexities in life where two standards that you hold equally dear are in conflict with each other and then what do you do?
For example, in the scenario above – one I live with every single day – we have a standard of valuing life above all else and providing the absolute best in terms of care, nourishment, etc to each of our children including the one I was speaking of. We also have a standard of doing everything possible so that our children can be free of pain, comfortable, have joy in their lives and the ability to interact at their fullest potential with the people and world around them. And yet the feeding tube and related issues for this child put those two sets of standards or values into conflict on a daily basis. If we “live by” one set of standards every moment, every day in his care, we are neglecting or denying the other set of standards and if we “live by” the second standard, we are compromsing the first.
So how do you respond to situations that are not so clear cut, not so black and white, situations where two closely held values are in conflict and you cannot possibly do both? People do face Sophie’s Choice situations in the real world every day.
These are complex and excruciatingly difficult situations and each person and family needs to search their own heart and soul and support system (extended family, church, medical professionals, etc) to assist them in making the decision that is right and best for them for that day – when you are dealing with these life and death situations, you revisit these decisions EVERY DAY. You don’t just make it once and it is done with.
These are not decisions to be made by Congress, politicians or the courts.
The thing that I find so disturbing in the last week is the political grandstanding and posturing of the politicians from Governor, the President, and members of Congress for this one case while AT THE VERY SAME TIME they ALL are making decisions that will ADVERSELY impact hundreds or thousands of other people who need the kind of care, feeding tubes, etc that they claim they want to preserve for Terri, yet they are cutting it off for other people. Why is that? For example, the case of Sun Hudson in Houston is so disturbing to me and yet no one is talking about it. Perhaps if I were his parent, I would want the life support discontinued, but the point is -it should be the parent’s decision, not a law called “Futility of Care” . . . . . . unless we are going to agree as a society to impose that standard on ALL citizens not just the poorest…..”
With everything that I have read and seen on tv these past few weeks it is hard not to feel the pain of both sides. Even if Terry will never recover who is Michael to have had her feeding tube removed? He states he is just doing what Terry would have wanted and he believes in his marriage vows… till death do us part and in sickness and in health???? If he truly believed in his marriage vows he would not have had 2 longstanding affairs within 3 yrs of her illness and he wouldn’t be living with a woman and have 2 children… He did not give her life and he should not have been able to petition the courts to have her feeding tube removed. I am not sure why he couldn’t divorce her and give her back to her parents… He states he can’t move on with his life until this chapter is closed, he moved on many years ago but apparently it won’t be closed until her last breath is taken. If Terry really isn’t aware of her surroundings and isn’t in any pain who is it hurting to let her live? How do we really know what she is feeling or thinking if anything, we will never know. In the state that she is in she doesn’t have a quality of life but who are we to say it’s ok to starve her? If we take Michael Schiavo, The Schindlers and religion out of this equation we still have Terry and she is breathing on her own and that in itself is life and I just can’t get past the fact that her life is being taken from her. I don’t believe Michael is doing what Terry wanted I believe he wants the last word and ultimate control. You can look into his eyes and see the kind of man he is… If you put his picture and Scott Petersons picture side by side and look into the eyes you will see the same glare of the eyes. This pretty much tells me what I need to know. If Terry was on machines and being kept alive by artifical means I would say not to prolong her life. But the fact remains that she is breathing on her own and should have been allowed to die naturally. I say let nature take its course.
Michael now has consented to an autopsy. If it shows she was not in PVS, He has another malpractice suit that should keep him and his common law wife and two kids for the rest of their lives . Where is the justice. One other point. When someone is in the dying process they start withdrawing from life by sleeping longer hours , they lose interest in food. They don’t just stop taking in food and water all at once. I don’t mind being called the religious right. At least I will never be called a murderer. Who gave us the right to decide who should live or die.
We can see from the real pictures of Terri that she is severly brain damaged we do not need a brain scan, but does that make it okay to kill her. If so, then what about many other brain damaged people, people who are so mentally challenged that they look in much worse condition, but we are not killing them.. what bothers me with this situation is Terri has a loving family that wants to provide care for her, and make what is left of her ability and time on this earth as good as possible … why are we keeping Terri’s parents from taking her… it is her mother that wants her, she brought her into this life, and we are going to deny her mother the right to take care of her helpless child.. no matter how old we are if our mothers are alive we are still their children.. what are we as a society… we are truly killers… the world is watching, and we are definetly compounding the notion that we are a cruel and sadistic society.. i spoke to one muslim who is a medical doctor, and his response about this issue was… “Is this what you people want to bring to us forget it.” I agree
From comment #384:
I don’t know whether to laugh or to weep.
Have any of you been informed that eventually a person cannot live on the tube feeding, that the bowel will begin to not absorb the nutrients, and that it will become atonic or atrophied? Have you been informed that eventually the constipation will lead to obstipation with impactions and eventually there will be kidney failure with fluid volume overload? I am not trying to be cruel or shock loving families dealing with this, but many people on this blog are ignoring science and physiology. All of you just need to know this and understand that there will come a time that if you don’t back off the tube feeding and eventually stop it when these problems develop, then your loved one will suffer much more than if you taper it down or stop it, with pain medication. My experience is that I have never met a family member who was informed of these facts when they were coaxed or pressured to start such feedings. In some cases, the TF has given more time with a loved one – many good years mixed with the pain. However, some people have nothing by prolonged pain or nothingness while the family is left with unbelievable problems with which to contend. The importance of all this is that prognosis is important (not everything, but important), and the science of pathophysiology is important to help families make the most informed decisions possible. Most importantly, when the time comes to stop expecting the medical system to fix what cannot be fixed and to help provide people we love with palliative care, it is a more peaceful way to spend last hours than fighting for the impossible. Terri would also eventually not have tolerated her TF. She was terminal before the cessation of the TF. I do not appreciate the abrupt stopping and starting done by the courts or that her last hours have been spent with her family in her face telling her she is starving. Even if she cannot understand that, they think she can, and I consider it an effort to be emotionally abusive. It has to be very disturbing for the staff who are trying to care for her. It would have been nice if others had not interferred and the TF could have been gradually reduced, just to be nice, even though she cannot know what is going on. There are staff there and they deserve not to be traumatized by the events. I will add also, that all hospices do not require that TF be stopped. Really all cases should be considered as unique. I recommend that families stop them when the patient starts holding a lot of fluid in the low extremities. However, some families wait until the fluid is backing up into the lungs and the hear and see the loved one drowning. They will then grasp what is being told to them and will allow the feedings to be stopped. They are then horrified that their decisions not to stop the TF at all cost lead to such a memory in the end. They wanted the end to be peaceful. So then, I spend time consoling and trying to quite the guilt. They do the best they can to cope. So, I suggest no one make promises they will never stop a TF, because with that promise, some of you will HASTEN death by drowning. Sorry to be so blunt, but there are realities to contend with and now you will all be more prepared for those when your time comes to make the decisions for someone you love.
Regarding the bulk of comments #384, #385 and #386 …
With unlimited respect for everyone’s right to express their opinion, I can’t fathom the authors’ utter disregard for the detailed FACTS of the Schiavo case, and the apparent disrespect for well established medical science and well established law protocols.
Wow!
Ok keeping the eye on the donut not the hole: one does not have to be in a PVS to have treatment stopped in reality, because medical futility is still a rationale for continuing treatment is many cases. Secondly, Living Wills and Advanced Directives do not have to be in writing. Nextly,… it does not matter what Terri said or did not say because once she became unable to express her wishes, her immediate next of kin got first dibs on the legal right to call the shots and she gave him the right to do that by default because she did not plan. Nextly again, anyone who executes an advanced directive (or their surrogate on their behalf) can revoke it or change it at any time,… and that does not have to be in writing either. Now these guidelines apply to most states, most likely in some form or another. Now what does this mean? It means that if Terri had everything in a neat package by an attorney with 2 unrelated witnessed notorized statements, her surrogate could still change it all because the surrogate becomes in charge when the pateint is incapacited. Now it is easier for an interested party to legally challenge, but even in most states, the MD can call the situation medically futile and stop treatment even despite patient signed advanced directives, or surrogate wishes. So it is best to have the family and in-laws on the same page to prevent legal battles. I know it is disturbing to hear this because many people are rushing out to fill out these documents thinking they will all be honored. But not so. Some people are saying right now that even if Terri had written one thing she could not have forseen how she would feel now. So they have already found a loophole for throwing out her wishes had she written them down. Night Night.
My goodness, this has really deteriorated over the past 12 hrs. Does anyone really have any interest in the medical facts of the case or in medical facts in general? Nursepractitioner, myself and several others have tried to give some real medical information on this site and it is quite apparent that most are piling on to poison what was once a reasonable discussion (with the exception of the banished David).
Not only that but it also seems that several posters believe that the medical field, docs, nurses, administrators and insurers are hungry to terminate the lives of anyone with a disability. Does ANYONE really believe that? The only reason most of these people work in this profession is because they love it, and want to help people. If you only knew what crazy, long and stressful hours these people work and all for peanuts. Oh, I forgot, they do it because they want to starve the disabled.
Being the richest nation in the world and not having Universal Health Care makes us a cruel nation. Blindly allowing illegal immigrants to die of heat exaustion and thirst in the desert while US corporations eagerly await the arrival of more cheap labor makes us a cruel nation. Having full time employed families living in poverty makes us a cruel nation. Killing civilians and calling it “collateral damage” makes us a cruel nation.
The courts have ruled, many times, that it was Terri’s wish, when she was conscious, to not live on in the state she is in. Her husband, as any spouse would, held out hope for quite some time, and when it became apparent that there was none, he started the process to let her go, like she said she wanted. They have removed her feeding tube to facilitate this. IF you belive that she should have the right to die, but that removing the feeding tube is immoral, then do something to allow for euthanasia to occur legally in cases like this. IF you believe that there should be laws that block a person from having their expresssed wishes carried out when they are totally mentally incapacitated then please present a reasonable argument for why that should be the case.
By the way, Bonnie Airesman, can you please explain to me how an autopsy can show whether or not Terri was in PVS? PVS is a clinical diagnosis.
Dr Ted, I have been on “your side” on the T.S. case right along. However, you were wrong on virtually every other issue you brought up. However, this is not the place to go into all of those issues ! We could be here all day !LOL
It’s amazing to me…when Michael wasn’t going to have an autopsy, some people here took this as evidence he had “something to hide” (i.e., evidence he had abused or tried to kill Terri). Now that he’s consented to an autopsy, already the tune is changing and
How interesting. Is there actually anything Michael can do that will not be seen as evidence of his evil nature by those who have already prejudged him? Are any of you Michael-demonizers actually paying attention to the facts of the case, which have been so abundantly made clear by the many excellent posts here, or are you just interested in propounding your conspiracy theories?
Some people have made a big deal of a supposed contadiction between statements that Terri Schiavo should be feeling no pain and the reports that she has been given morphine (apparently small doses, twice).
Could one of the participating medical professionals discuss this? Someone told me that it was for breathing distress, rather than pain. Is that correct?
This is truly disheartening to post fact after fact and then to have them summarily discounted by ‘true believers.’ It’s hard not to lash out in anger when such short shrift is given of the very hard work that many have done providing objective medical information to the readers.
In the 19th century there was a political group that sprang up called the ‘Know Nothings.’ I’m wondering if they’ve come back to life.
Alan J. Denis Says:
March 28th, 2005 at 8:23 pm
I have to ask you, Robin, what exactly would you need to hear from a nurse or caregiver that would compromise your understanding that Terri’s cerebral cortex is GONE?
Lets start with the fact that I, too, am a medical professional. I happen to be a medical professional that has spent a time in a coma (enough to get me killed under that 10 day law in Texas) and been determined “hopeless.” BEFORE I became a medical professional.
I also happen to have spent virtually all of my adult life prior to that time dealing with a severely disabled child and a mother who had multiple cerebral hemorrages – back in the old days. My mother was the first adult to ever survive more than one cerebral hemorrage, the first adult to have a shunt implanted and the first human to try several experimental drugs that are standard therapy today. My mother was in a “vegetative” state for some time – back before there was no diagnosis for such.
So, there are some things I know both academically and from real time experience.
One of the things I can tell you from real-world experience is that an MD does NOT make you God. In point of fact, even the very best of them (and there are fewer of those than you think) make mistakes – critical mistakes. All too many of them are little better than quacks that I would not allow to treat my stuffed rabbit. But even the very best of neurologists has absolutely no real clue as to whether or not Terri is present inside that head or not. NOBODY on the face of this earth can say with any degree of certainty that Terri is “gone.”
Another thing that I can tell you is that there is not a single doctor in any field that does not rely almost entirely on the nursing staff – including the lowly CNA – for virtually all of his day-to-day observations of a patient’s condition. That is why each and every member of a nursing staff is required to document everything under the sun – including their patient interactions. Labs perform the tests – and these days the lab report tells the doctor what the numbers mean. Imaging runs the xrays, CAT, etc. – and most technicians that have been on the job awhile can read the results as well or better than the MD. The pharmacist is in charge of both seeing that your meds do not interact with each other and that you are getting an appropriate therapeutic dose. In this day and age, doctors interpret and co-ordinate. They are NOT “experts” in much. The “experts” are the nurses, the laboratory scientists, the pharmacists.
I would NEVER take the word of an MD over the words of all of the other “experts” – the ones that provide the ongoing care. Particularly not “experts” that will risk their licenses, their very ability to make a living, in order to present a contradictory view.
What I DO know is this: there are hundreds of thousands of patients in this country alone every year that depend for some period of time on a tube for their food and water. The United States Constitution, the Universal Declaration of Human Rights and the Covenant on Civil and Political Rights (both of those are part of the UN agreements http://www.hrweb.org/legal/undocs.html ) ALL state – before nearly anything else – that each and every human being on this planet has a RIGHT TO LIFE without “distinction of any kind’ – INCLUDING STATUS. The Florida Constitution specifically guarantees a right to life to each and every citizen WITHOUT REGARD TO DISABILITY.
Now, before you discount what I am saying and label me a “right to lifer” let me tell you this: I am blue state born, blue state bred and when I get around to it I will be blue state dead. I am NOT Republican – or a Democrat. I am socially liberal about many things. I have been a women’s rights activist for my entire adult life and I’m not exactly young anymore. I am specifically NOT religious and in fact have not set foot in a church other than to attend a wedding or funeral in 30 years. I am a scientist. Some of my ancestors first arrived in this country in the year 1620 on the Mayflower. Others of my ancestors met the boat. I come from generations of people that have fought in every war – sometimes on both sides of the fence – for as long as this nation has existed. I was raised by a woman who was Truman’s librarian and the executive assistant to the Board of Generals. And I am a medical professional as well qualified as most.
Terri Schindler-Schiavo was not, prior to this crime, brain dead. She was not terminally ill in any way whatsoever. She had not, over the period of some 15 years, yet experienced any of the drastic “maybes” sometimes associated with feeding tubes. She is entitled by every treaty on human rights that the United States has ever been a party to to the basic sustenance of life – food and water. Nowhere do any of those agreements and treaties state that you are entitled to food and water only if you can consume them in the usual way. THERE ARE NO EXCEPTIONS FOR QUALITY OF LIFE OR MENTAL STATUS.
There are doubts in this case – doubts that have been raised and discounted by a single “judge” over and over. Judicial review reviews the procedure, not the findings. No NEW evidence or assessment of Terri’s status has been allowed to be assembled in **years** This CAT scan is a decade or more old.
We do not know everything – or even much on the scale of things – about the neurological system. You may hear nerve cells don’t regenerate, but I can assure you that they do because I am typing with an arm that has been fully functional for nearly 20 years DESPITE a diagnosis of 4 **broken** cervical nerves that led to complete and “unrecoverable” paralysis of my entire upper right quadrant. Note that had Christopher Reeves not acquired an infection, HE was showing great progress towards recovery. And let me point out that my diagnosis took place just a few years before the time that Terri was injured at one of the top medical institutions in the country for such things, using the very latest technology. I was reaching full recovery just as she was being injured.
There is extensive disagreement between the family members in this case. All of Terri’s long time friends and birth family claim that Terri would want to live. All of the people that claim she would want to die are either Michael himself, who has a conflict of interest both in regards to money and the new relationship, or his immediate family. The judge himself has acknowledged that years ago he discounted sworn testimony regarding her wishes given by a party not related to either her family or her husband’s family.
In my opinion – and I have had to make these kinds of judgements for my child, my mother, my self, my great neice and my sister repeatedly over a lifetime – those who state that they believe the husband because they would tell their husband something like this but not their own parents are virtually begging to be left in Terri’s condition. And that circumstance is not the norm. Certainly in my family, despite our many battle, disagreements and resentments, everyone is very aware of what our own, our children’s and our parents wishes are – just in case.
Note also that the judge discounted Terri’s religion – something else she is entitled to. Terri was a practicing Catholic, raised in Catholic schools. The Catholic Church might agree with Terri’s right to refuse medical treatment, but they would judge this action given the present circumstances of her known condition, as *suicide.* She would not even be entitled to last rites! This would be an abomination to every religious teaching Terri ever knew.
Were Terri terminally ill our laws have given the family the right to refuse medical treatment for her. But she is not and has never been terminally ill. The state of her cerebral cortex – whatever that may be at present – renders her DISABLED not dying. She is simply inconvenient.
This is MURDER. This action against this disabled individual is a crime against humanity for which the United States of America can and should be prosecuted in an internaational court of law.
This is an abomination. Since when does the executive branch “obey” the judicial? If that were the case all the people of color in this country would still be slaves! The executive branch exists to act as a check on both the judicial branch and the legislative branch. Both George Bush and Jeb Bush have abandoned their clear, sworn duty to uphold the Constitution.
We do NOT murder the disabled in MY America – even with judicial permission.
Thanks, NursePractitioner for the clear and dispassionate medical information. When my son suffered brain damage when he was born (severe anoxia due to undetected placenta detachment/deterioration) the docs were pushing a G-tube saying he didn’t have enough brain function for even a suck reflex. We were fortunate enough to have a pediatrician cousin who advised us against it, and an angel in the form of a nurse who made it her mission to get him eating.
As someone who has had to make life-and-death decisions about the medical care of a loved one, I really appreciate what you said about it being a day-by-day thing.
To make it clear that I am not the “other Barbara,” I must say, the concept that Terri’s parents’ wishes and needs with respect to Terri’s fate should be granted greater deference than her own is baffling to me. At a point after having been married for six years (actually, even after one year of marriage) there is no doubt in my mind that my husband knew me much better than my parents, so I have no reflexive distrust of Michael Schiavo. But as I understand the post, and certainly the expressed intentions of the Schindler family, notwithstanding what Terri would have wanted, or whether Michael Schiavo’s course of action honored Terri’s desires, it is more important that a mother not suffer the death of her child in a manner that she objects to than the child should not suffer the continued care and treatment that she objects to. Sure, you are always a mother, but your children become adults and go their own way if they wish. That it often seems like a one-sided bargain is simply immaterial: Children often claim even as adults a right to parental care and attention long after parents have lost the legal right to force children to accept it when it isn’t wanted. As a practical matter, the Schindlers’ seemingly monolithic commitment to continuing Terri’s life no matter what her wishes or physical circumstances clearly undermined the credibility of their case in front of Judge Greer.
Also, a bit of further medical information re Terri’s level of discomfort. Terri is not free from conditions that, if she did feel pain, would be causing her pain right now. She has had for at least several years severely cramped and atrophied muscles, particularly in her hands, feet, and lower limbs. Those who focus relentlessly on how natural a feeding tube is apparently don’t make the connection between input and output, which must also be dealt with “medically.” Indeed, Terri Schiavo was at one point located to her home, where, after three weeks, her family acknowledged that her needs were “overwhelming” and she was returned to institutional care.