Featured Article

The Gods of Liberalism Revisited

 

The lie hasn't changed, and we still fall for it as easily as ever.  But how can we escape the snare?

 

READ ABOUT IT...

Tuesday, May 01, 2007

Texas: Brief Update on Baby Emilio Gonzales

It is my understanding that Baby Emilio was being considered for transfer to another facility. A doctor came to evaluate and found the little boy to be too ill to be transferred at this time. And all the while, the Texas hospital is still refusing to provide a trach and g-tube. Why? Is this a means to set Emilio and his family up for failure? A means to keep the little boy too fragile to travel and therefore untransferable, even if a willing facility is found? That's certainly the way it looks.

The Texas Futile Care Law was not intended to obligate a patient to die nor to strip away the patient's rights and the rights of the patient's family to make decisions.

The Texas Futile Care Law was not intended to be utilized as a means to rid ourselves of the helpless and vulnerable of our society, as was done in Nazi Germany.

Previous Blog Posts:


22 comments:

mja said...

Wow. Do you have a credible source to verify this information? Jerri Ward has recently posted that the attending physician recently told her Emilio was perfectly healthy, except for his brain. Sorry, but 'brain illness' does not make a person too ill to be transfered. You lose all credibility when you post garbage.

Carrie K. Hutchens said...

Might I ask where this statement is posted?

Jerri Ward has been quoted as saying she believes Emilio is a good candidate for a trach and that a trach is necessary for him to be transferred. Might that be what you are referring to?

I was told yesterday that Emilio still doesn't have a trach.

Seth said...

The following information is available to you on the web, mostly from a two page clinical summary that Ms Gonzales’ attorney released to the media and blogs (a huge transgression in terms of confidentiality), but also from interviews of physicians and other spokespersons.  There is an obvious incongruity between the mother's story about how Emilio responds to her, grasps her hand, turns his head to her voice, opens his eyes and looks at her, compared with the history that the child has been blind and deaf since birth, prior to the more precipitous degeneration of almost all his cortical structures and brainstem function over the last few months. He is 99.5 % brain dead, has exhibited no higher brain function since late January, and has had absent cough, gag, corneals, dolls eye reflexes since late Jan 2007. Abbreviated apnea tests show no respiratory effort for two minutes. His only response to pain is a faint grimace and slight truncal arching. He has neurogenic bladder requiring catheterizations, and requires considerable invasive efforts to treat severe constipation.
His lungs have shown a tendency to collapse repeatedly, even with a cuffed endotracheal tube in place and management in a critical care setting, making tracheostomy and a chronic respiratory/nursing home environment very problematic.  The respiratory therapy maneuvers required to manage his pulmonary issues are quite vigorous and invasive. This mother and family are incapable of caring for him in a home ventilation environment, even if it were medically possible. Yes, the baby could be subjected to a tracheostomy and G-tube, knowing that these procedures would cause suffering and lead to a more rapid and sudden demise due to worsening respiratory complications.

The emotional and psychological toll on the hospital staff must be huge. People who willingly take care of critically ill children are special individuals, and in my experience, do their utmost to save every child that they possibly can, pulling out all the stops. In a way, they are now being forced into the role of the abuser, parsing their feelings about the interventions and procedures they are forced to employ (in the setting of hopelessness, and prolongation of death) with their more natural and chosen roles as caregiver/advocate.

It should be apparent that Emilio is no Schiavo or Christopher Reeve. Schiavo’s case involved a patient who did not have a terminal disease, had modest care requirements, and had a true, but severe disability. She was fed with a feeding tube. The Schiavo case = euthanasia to me. Emilio is dying from a rapidly evolving, fatal disease without any treatment possibilities, even experimental. Emilio’s brain has been destroyed. He is a beating-heart preparation. Saying he is “disabled” is like saying a 767 airliner full of fuel crashing into a mountain is a “malfunction.” The careproviders are being forced to witness the painful, inexorable march of the natural history of this fatal incurable disease.
The cases of individuals such as Christopher Reeve are not relevant to this case at all- the need for mechanical ventilaton due to spinal cord disease or a primary muscle disease is entirely different from requiring a respirator because of lack of cortical and brainstem function. Mr. Reeve was never asked to give up his ventilator because he was neurologically impaired- he had completely normal and full cognitive function and was making his own choices.

People need to stop referring to 6+ years of life expectancy for Emilio- babies with genetic neurodegenerative diseases that present fulminantly in infancy die much earlier in life. Emilio’s disease trajectory has been rapidly progressive and destructive. (see http://www.wesleyjsmith.com/blog/2007/04/baby-emilio-hearing-postponed.html). Dr Doody’s perseveration about word definitions (dead vs dying) is truly pathetic. If you were out walking and a three ton meteor struck you, it would make no sense to argue whether the outcome could have been different if the meteor were iron core vs a ball of ice. Emilio’s diseae is like that meteor. Dr Doody has taken it upon himself to redefine the Catholic Church’s position of end of life care.

For those interested in the truth vs fabrications, there are several sources of information on the church’s position, expanding on the brief description in the Cathechism.
See the National Catholic Bioethics Center at http://www.ncbcenter.org. and The Center for Bioethics & Human Dignity (a Christian bioethicis site) at http://www.cbhd.org/. See   http://www.ewtn.com/expert/answers/end_of_life_decisions.htm also.

A breathing tube and respirator employed to maintaini a heartbeat in a terminally ill baby with an irreversible, untreatable disease is the kind of extraordinary care and disproportionate application of medical intervention that is not supported by the Catholic tradition. Feeding, hydration, and pain/syptom relief are being continued. These are ordinary and proportionate interventions. Removing the breathing tube in this instance to allow a peaceful death would not constitute euthanasia. Continuing intensive care support until the heart rate control mechanisms unravel and the heart stops constitutes prolonging death.
 
The Texas futility statute requires the hospital to assist the family in finding physician(s) and an institution willing to care for the patient after an ethics committee has determined the care of the patient to be futile.  The statute requires ten days for this process, but the actual timeline actually allows about 16-17 days for the purpose of locating alternative care. If you had looked at information available on the web, you would have seen that the physicians caring for Emilio obtained three separate "second opinions" from other prominent Children's Hospitals regarding his diagnosis, treatment, and prognosis prior to the first Ethics Committee meeting. All concurred with the medical decision making and agreed that care was futile. The hospital started the process of trying to locate a willing receiving institution in mid February and contacted ≥ 30 different Children's Hospitals, all declining to accept Emilio on medical grounds. The futility statute has been rarely utilized in cases involving infants and children in Texas- I know of only 2-3.
 
Harsh comments about funding status and the medical/ethical stance of the hospital have been cruel, uninformed, and misguided. Ironically, the financial burden to the hospital would be relieved by preparing the baby for chronic care and then sending him home to his inevitable and rapid demise. But, their decisions are obviously not driven by financial considerations.  Children's Hospital of Austin is part of a not-for-profit Catholic health care network, whose guiding principles came from the Daughters of Charity order, which began in France in the 1600's with the first organized hospitals in existence. They take care of all patients, regardless of their ability to pay.
In response to questions by local media regarding the actual cost of providing care to Emilio since late Dec 2006, the estimate was > $1.5 million. Over half of the patients in most pediatric ICU’s have no insurance coverage. Children's Hospital of Austin coordinates and participates in medical missions to third world countries to provide care, including basic medical care as well as surgical procedures. A foundation was set up to bring in patients from all over the world to correct congenital heart defects in patients who would otherwise die in infancy and early childhood.
 
The current environment of consumerism, egocentrism, and focus on personal rights vs personal/parental duty and responsibility has led to the trumping of the integrity and moral/ethical foundations of medicine by the autonomy of the patient/family. I need no lecture about the moral/ethical problems of the paternalistic era of health care.  I trained during those times and witnessed decisions allowing patients with trisomy 21/duodenal atresia, and myelomeningocele to die. I saw many children with chromosomal defects die of Eisenmenger's syndrome following decisions to withhold corrective heart surgery. If parental autonomy always prevailed, we would be in trouble. A number of times I have experienced the situation in which a parent has asked/demanded that care be withdrawn when no physician or consultant involved in the case felt that this was appropriate.
It might interest you to know that the largest (by far) right-to-life coalition in Texas actually supports the Texas futility statute and was at the table when the law was written and passed. The smaller, more radical, vocal, and extreme groups in Texas seem interested in driving patient autonomy to the point that even euthanasia could be demanded of the medical profession. Moderate right-to-life advocates are so concerned about this that they have allied with the state’s hospital and physician organizations in support of the Texas futility statute.   

A well established ethical principle supports the medical profession in declining to provide treatments that are not beneficial or therapeutic. Stating that the parent's choice should always outweigh the physicians’ medical/ethical/moral stance is a quite dangerous position- indeed, one that you should recognize as representing another treacherous slippery slope that society should approach very carefully. There is considerable concern by ethicists and the medical community that the pendulum has swung too far toward patient autonomy. There are numerous “physician conscience” laws on the books now across the US that are intended to defend the integrity and moral stance of care providers.
See “Health Care Providers' Right of Conscience” at http://www.cbhd.org/resources/healthcare/collett_2004-04-27.htm
Only if yours is an extreme right-to-life position (keep the heart beating at all costs) could you fail to see the danger of unchecked patient autonomy.
Did you know that in mid February the mother had picked out Emilio's burial clothes and funds were obtained by the family for a Catholic burial?  Then somehow the extreme right-to-life groups got involved, and Emilio became the pawn of the political agendas of these groups. This sequence of events is so unfortunate- where is your moral/ethical justification for such a cruel objectification and politicization of a human life?
 
The cost of medical care in the US is ~ 16 % of the GNP, with a huge fraction of that cost being devoted to true end-of-life care. There is broad consensus that end of life pain and symptom relief are suboptimal and that hospice care options are underutilized.  This is where economics does come into play on a societal level. How many patients like Emilio are there? Say there are 100 in Texas alone in a year's time. 100 X 1.5 million = 150 million dollars. What could society do with extra funds of that magnitude to improve health care access?
 
It is dangerous to make uninformed statements about such a volatile and sensitive issue, especially one in which the family and her lawyers are out parading their version of the story with its gross inaccuracies in the media, while the hospital and medical profession has remained circumspect and responsibly restrained out of concern for family confidentiality and privacy and staff privacy and safety.




A Catholic physician

Seth said...

The legal team handling Emilio's mother has seen that public opinion and media coverage has not gone their way. Though Emilio's clinical status has been misrepresented to the public by their legal team, there are enough inconstencies in family statements and press releases {e.g., turning and fixing vision on family and turning to a sound while at the same time being blind and deaf since birth) that the general public knows that the baby's condition is much worse than represented. Responses to American Statesman articles are almost unanimously in favor of a peaceful end to Emilio's suffering.

Though Bishop Aymond has been attacked by zealots claiming his participation in a conspiracy, all but a few recognize that the Bishop is a Christian man of unquestioned integrity who is unlikely to have made such strong statements in favor of the hospital and physicians's views on Emilio's care unless he was sure of the facts and the theology. The family has rebuffed repeated offers by the Bishop to meet with them to discus the family's plight.
Jerri's crew wanted to postpone the probate court hearing till after the legislative session because of their fear of the outcome of the hearing. Emilio has not become the true poster child that they had hoped. The public has realized that Emilio is no Schiavo- Emilio is no elderly person being euthanized by family members inconvenienced by the responsibility of caring for their family member. Emilio is a critically ill patient on ICU life support in a nearly brain dead state- a baby with a terminal disease facing imminent death who is being maintained on life support with no hope of recovery or leaving the hospital. All this and many other inconvenient facts about Jerri's case would have come out in a court hearing with huge media coverage and in the public record.
At this point, the main goal of the extreme political interests in this case is simply that Emilio die on a respirator, however long that takes, as that would seem to be a victory or at least save face for them.
As was indicated in previous news reports, there is a hearing scheduled for May 8th

Seth said...

I suggest you read the following article from the National Catholic Reporter regarding the Schiavo situation and its impact on the current debate.

http://ncronline.org/NCR_Online/archives2/2005c/070105/070105i.htm

The discussion of the use of the ethic of reciprocity/application of the Golden Rule is quite telling. I tried to find another essay on the web that is also quite relevant here- an analysis of end of life decisions and human attachments, but could not find the reference. It speaks to the extreme difficulty some individuals have in allowing their loved ones have a peaceful demise. The essay uses the concept of pathologic/selfish/egocentric attachment vs a loving attachment and relates the family/spouse/parent's difficulty in making end of life decisions to the types and proportions of attachments at play.

The article from the National Catholic Reporter about the Golden Rule says this:

"...Finally, he suggested applying the Golden Rule and asking: “What would reasonable people think should be done or what would I want done if I were in a similar condition? Maybe all we have left is the ethic of reciprocity or the Golden Rule,” said Rosell, an ordained American Baptist minister and an associate professor of pastoral theology -- ethics and ministry praxis -- at Central Baptist Theological Seminary in Kansas City, Kan.
Rosell noted that several hundred people have been given “the Golden Rule” test, including many of his family members and students. Despite professing vehement support for the continuation of life supports in the case of patients in a persistent vegetative state, Rosell said he has yet to find a single person who has volunteered to have tubes and a respirator attached to themselves in order to prolong their life were they to become permanently incapacitated with no prospects of improvement."


Jerr’s posts on the net refer to “Emilio’s nurse” who gives the glowing report about Emilio's awareness and purposeful movements. This person is a nurse "planted' by Jerri as a visitor who has chosen to disgrace herself and her profession by reporting this misinformation. To take this nurse's word over that of a dozen or more independent pediatric sub-specialist physicians and many more critical care nurse's skilled observations is a true stretch and one of the tragedies of this case. To choose to believe this operative of Jerri’s also involves accepting the paranoid and incredible belief that the entire hospital, all its physicians, and nurses are together conspiring to deceive the public and do harm to Emilio. Does this really pass the "smell test" to you?

Jerri has chosen not to reveal that the mother was ready to bury Emilio in February, having picked out his clothes, and repeatedly expressed the desire to not let him suffer or be kept alive by machines, and refused surgical procedures that would have prolonged the dying process. Then the third parties came into play, like the legislator (with proposed legislation to pith the state futility statute) who crashed the first ethics committee, not identifying who he was, pretending to be representing the family. For the forces that are "handling" Ms Gonzales, Emilio's plight has been lost and forgotten in their maneuvering. He became an abstraction and a pawn of the political agendas of others.

The economic argument is a hard one, I grant you. I do not believe that economics should play a deciding role in end of life decisions from the individual patient's point of view. But to deny that there is a huge societal question of social justice here is to truly be like the ostrich with its head in the sand or the monkey who covers his ears. Continued blind application of unfruitful, burdensome, non-efficacious medical interventions do nothing other than prolong the death of an individual, while offering no hope of changing the outcome. This is expensive. You are no doubt aware of the huge number of uninsured children in Texas, the huge number of unvaccinated kids. You probably know that children with no primary/preventative care make up a disproportionately high % of hospitalized and ICU patients, have a disproportionately higher risk of dying, and have significantly longer length of stay. What is your answer to this dilemma, when 16% of the nation's domestic product is already going to health care?
Doesn't the 1.5 million dollar bill for Emilio's care when multiplied over time feel a little different when you look at the health of society as a whole?

We often talk about natural death and not wanting to take the decision out of God's hands. From first hand experience over many years, I know with certainty that medicine is able to take the decision out of God's hands for a while- to postpone God's decision.

Back to the NCR article for a second:

"Rosell hopes to practice what he preaches. “As a Christian I lived my life and will die with regret that I have not sufficiently shared my resources,” he said. So out of a sense of “distributive justice,” he does not want his caregivers to expand services beyond those that will keep him comfortable in the last stages of his life.
Rosell and other ethicists pointed to the example of Pope John Paul who in the final week of his life chose to die at home without any infusions for his heart or the use of a heart pump or ventilator.
In her gerontology practice, Thibault has seen patients who were “detained from union with God” because of the needs of the caregivers. She recalled a woman who wanted to keep alive her 80-year-old husband, who was in a vegetative state, because she was dependent on his pension, which would stop at his death.
Thibault thought the issue of keeping a loved one alive at any cost will become “significant as baby boomers age.” But she also noted that sometimes people need a little more time to hold on to their loved one to come to terms with their loss, especially if the cause of brain death has been sudden -- as opposed to death by dementia."


For a moment, put yourself in the shoes of the pediatric ICU nurse at Emilio's bedside during her 12 hour shift, watching him suffer with no hope of recovery, experiencing his loss of dignity as he must have his bladder catheterized or his stool extracted.

Also, in a careful, deliberate, and honest manner, apply the golden rule as suggested by Dr Rosell as you contemplate the manner of your own death and its impact on your loved ones. Will you apply the same rules and values to yourself as you seem willing to impose on others?

It is an exercise that all of us should experience for ourselves as we go thru life, so that our loved ones are well aware of our wishes at the end of life.

Seth said...

The truth about the doctor's visit to look at Emilio last week is this:
A pediatrician came to the Children's Hospital of Austin with the supposed purpose (according to jerri Ward) was to evaluate Emilio for possible transfer to another children's facility. Acceptance for transfer was supposedly already obtained by this pediatrician. It turned out that this whole exercise was a farce. The visiting pediatrician admitted that that was not his purpose at all. He then proceeded to harass the ICU physician on call. The ICU staff witnessed his rude, insulting, and condescending behavior.

The legal team handling Emilio's mother has seen that public opinion and media coverage has not gone their way. Though Emilio's clinical status has been misrepresented to the public by their legal team, there are enough inconstencies in family statements and press releases {e.g., turning and fixing vision on family and turning to a sound while at the same time being blind and deaf since birth) that the general public knows that the baby's condition is much worse than represented. Responses to American Statesman articles are almost unanimously in favor of a peaceful end to Emilio's suffering.

Though Bishop Aymond has been attacked by zealots claiming his participation in a conspiracy, all but a few acknowledge that the Bishop to be a holy, Christian man of unquestioned integrity who is unlikely to have made such strong statements in favor of the hospital and physicians's views on Emilio's care unless he was sure of the facts and the theology. The family has rebuffed repeated offers by the Bishop to meet with them to discus the family's plight.
Jerri's crew wanted to postpone the probate court hearing till after the legislative session because of their fear of the outcome of the hearing. Emilio has not become the true poster child that they had hoped. The public has realized that Emilio is no Schiavo- Emilio is no elderly person being euthanized by family members inconvenienced by the responsibility of caring for their family member. Emilio is a critically ill patient on ICU life support in a nearly brain dead state- a baby with a terminal disease facing imminent death who is being maintained on life support with no hope of recovery or leaving the hospital. All this and many other inconvenient facts about Jerri's case would have come out in a court hearing with huge media coverage and in the public record.
At this point, the main goal of the extreme political interests in this case is simply that Emilio die on a respirator, however long that takes, as that would seem to be a victory or at least save face for them.
As was indicated in previous news reports, there is a hearing scheduled for May 8th

Carrie K. Hutchens said...

Catholic Physician (aka woundedpig), thank you for taking the time to post. It does appear, however, that you have presented prepared statements, especially since little applies to my particular articles or blog posts. At no time have I misrepresented Baby Emilio's condition, nor have I made any uninformed statements.

You said that it might interest me to know that the Texas Right to Life was at the table when the law was written and passed. It might interest you to know that I knew that and Dakota Voice, on April 26, 2007, published the article, "Governor George W. Bush's Involvement with Texas Futile Care Law". It addresses Texas Right to Life's involvement as well.

You said, "Yes, the baby could be subjected to a tracheostomy and G-tube, knowing that these procedures would cause suffering and lead to a more rapid and sudden demise due to worsening respiratory complications."

More sudden than by turning off the life-support?

More suffering than from turning off the life-support?

You said, "The emotional and psychological toll on the hospital staff must be huge."

I say, "So?"

Well, I'm not really that cold-hearted, but this is not about them. Their emotional and psychological toll is a non-issue, or should be, when it comes to who should be deciding whether a life should be terminated or not, especially when the patient and family do not agree.

Another point is... they did choose to work with the seriously ill and dying, so I'm suspecting they knew it was going to be an emotional roller coaster ride at the onset, so Emilio's plight should not be a shock to their system they weren't expecting.

You said, "Stating that the parent's choice should always outweigh the physicians’ medical/ethical/moral stance is a quite dangerous position- indeed, one that you should recognize as representing another treacherous slippery slope that society should approach very carefully."

Really? But it is quite safe to "always" go with the physician and hospital's position? We should have no fear in that?

I have made it quite clear that I do no believe in a mere 10-Day Notice when it comes to termination of life! Nothing you have said in any of the prepared statements, has changed my mind in the slightest.

I have not written about Christopher Reeve's and the futile care law, but I have addressed the Andrea Clark case, which you didn't even mention. She was a conscious woman fighting for her life when a hospital in Texas decided it was going to take advantage of the futile care law. She didn't make it, but she sure had the right to give it a go!

(Andrea Clark and her family lost precious time together in having to fight against this law.)

As for "conspiring" which leads to the suggestion of a conspiracy that is implied as impossible and suggested as a paranoid state of being -- there doesn't have to be a conspiracy or a conscious conspiring. It's called "mind-set" and does exist. Businesses do often hire people of the same mind-set, so if they are -- aren't they going to pretty much agree as a group?

You said, "Jerri's crew wanted to postpone the probate court hearing till after the legislative session because of their fear of the outcome of the hearing. Emilio has not become the true poster child that they had hoped. The public has realized that Emilio is no Schiavo- Emilio is no elderly person being euthanized by family members inconvenienced by the responsibility of caring for their family member. Emilio is a critically ill patient on ICU life support in a nearly brain dead state- a baby with a terminal disease facing imminent death who is being maintained on life support with no hope of recovery or leaving the hospital. All this and many other inconvenient facts about Jerri's case would have come out in a court hearing with huge media coverage and in the public record."

And you know what "Jerri's crew wanted" and why? Interesting!

I also find it quite interesting that while you say that Jerri Ward and her team are giving out inaccurate information, I have received none of it. Why do you think that is?

Anonymous said...

Carrie K. Hutchens,

To your previous question to me: Here is the link to Jerri Ward's post concerning the Baby Emilio case in Texas. On April 24 she made the statement that his body was healthy according to the attending physician.

http://www.wesleyjsmith.com/blog/2007/04/baby-emilio-hearing-postponed.html

Your statements are also not accurate. The ethics committee along with the physicians (and the Bishop by the way) feel that providing Emilio with a trach and a g-tube is more burden than the benefit he would receive. The family and lawyers have been unable to find another hospital to accept him to do these procedures. If he received a trach and a g-tube, he would then be a 'possible' candidate to be transfered to another facility willing to care for him until he dies. So far, neither facility has been identified.

Carrie K. Hutchens said...

What statements did "I" make that are not accurate? Identify them, please.

Anonymous said...

Carrie: You stated that Emilio has not received a trach and a g-tube from his current facility as "A means to keep the little boy too fragile to travel and therefore untransferable, even if a willing facility is found?"

That is not accurate. He does not need a trach and a g-tube to be transferred from his current facility.

Anonymous said...

Carrie: I just went back and read your original post. You stated two opinions of what the law was 'not intended' for. Can you please give your opinion on what the law 'was' intended for? Thanks.

Carrie K. Hutchens said...

No, I didn't "state" that!

Quoting me: "Why? Is this a means to set Emilio and his family up for failure? A means to keep the little boy too fragile to travel and therefore untransferable, even if a willing facility is found? That's certainly the way it looks."

Posing a question of possibility and saying what it looks like is certainly not stating it is fact. It is, however, saying that we need to inquire, rather than simply accept because the powerful have told us we must accept their truth as our own.

Carrie K. Hutchens said...

In my opinion, the law was intended as a safeguard against involuntary euthanasia.

Carrie K. Hutchens said...

Very interesting read!

"A Not-So-Divine Intervention"
Texas Catholic bishops fail to protect unwanted patients.
By Wesley J. Smith
(May 2, 2007) NRO

http://article.nationalreview.com/?q=Y2M1MzkwOWZjMzUzY2EwNWMzYWMzM2EyOWVlYjE4NTk=

Anonymous said...

Carrie K. Hutchens said... No, I didn't "state" that!

It is sad when people say things and later use 'technicalities' to dismiss their statements. You may not have 'stated' that is was a means to keep a little boy to fragile... but you DID STATE that 'it was your understanding that a doctor came to evaluate and found the little boy too ill to be transferred at this time'.

I provided you with a link where Emilio's lawyer stated he was healthy except for his brain. This would not make him too unstable to be transferred. So I ask the question from the initial comment again: Do you have a credible source to verify your 'statements'?

I will not expect a response, because we both know that statement is not accurate.

Carrie K. Hutchens said...

"It is sad when people say things and later use 'technicalities' to dismiss their statements. You may not have 'stated' that is was a means to keep a little boy to fragile... but you DID STATE that 'it was your understanding that a doctor came to evaluate and found the little boy too ill to be transferred at this time'."

What technicality am I utilizing? It's obvious that I didn't make the statement you accused me of and you even admit it in the paragraph above.

So what are you now stating is not accurate? My understanding or are you saying that it is not accurate that I have that understanding?

Yes, I received my information regarding the physician from a credible source and it wasn't from someone else's article. Had it been the latter, I would have quoted the source.

Anonymous said...

Carrie K. Hutchins said: So what are you now stating is not accurate?

Your 'understanding' is not accurate.

Carrie K Hutchens said: Yes, I received my information regarding the physician from a credible source and it wasn't from someone else's article.

Well, what excuse will you make up about your 'credible' source when the your 'understanding' is shown to be inaccurate? Will you blame your source, or blame yourself for having a 'misunderstanding'.

Your original post is garbage. Your 'understanding' is wrong. And your 'interpretation' and comments concerning your 'understanding' is soley intended to discredit the Texas Futile Care Law that you dislike.

If you dislike the law, fine, I can respect that. Just stop posting mis-information about the little boy dying in the hospital to make your point.

Carrie K. Hutchens said...

littlepig, I have no need to make excuses. If I were to learn that my "understanding" was inaccurate, I would be the first to post that it was, simply because that would be the right thing to do.

Speaking of inaccuracy...

You wished for me to visit Wesley J. Smith's blog to see what Jerri Ward posted. I did. What I found was quite interesting.

Jerri Lynn Ward, J.D. said in part on http://www.wesleyjsmith.com/blog/2007/04/baby-emilio-hearing-postponed.html

"Moreover, NO ONE HAS DONE A TRACH!!! That is the jist of the problem. Emilio, except for his brain, is stable and could withstand a trach and g-tube and go home to be with his mother until he dies or she gets other treatment--like hyperbaric oxygen treatment.

The hospital is, essentially, keeping this baby prisoner by the refusal to give a trach and g-tube which everyone agrees he would survive--ONLY because of their subjective opinion that continuing to live would somehow be bad for him."

The ONLY suffering he is doing is directly related to the intubation and lack of a trach. He has two tubes stuffed down his throat.

The stuff you cite from the ethics report (which was not written by the attending physicians)is garbage. He has NOT had repeated pneumothoraxes. He has NOT had chest tubes. His attending physician told me directly last Thursday that his body is healthy--with the exception of his brain."


Please tell me, littlepig, just where Jerri Ward said that Emilio "was perfectly healthy", as you have suggested she said. She said he is stable and his body is healthy -- as in could withstand a trach and g-tube (which she is saying he needs to be able to leave the hospital). There is a big difference between what you implied and what she was saying.

At the end of the day, it appears that your source information actually supports my "understanding". Thank you for providing the additional information.

Anonymous said...

carrie k hutchins: Your inability to understand is going to give me an ulcer. This is my last attempt.

Jerri Ward stated that the attending physician told her his body was perfectly healthy - except for his brain. (You have the link) Yes, that means he could get a trach or a g-tube; and yes, his current hospital / physicians are denying him this care.

He does not need a trach and a g-tube to be transferred from the hospital. He needs a trach and a g-tube to go home or to a facility that provides care to patients on home ventilators. (btw, you need a trach for a home ventilator) But, he COULD safely be transferred to another hospital to receive his trach and g-tube.

All he needs is a hospital that will agree to provide him with a trach or a g-tube. Jerri and the family have been unable to find ANY hospital across the country that is willing to accept him to do these procedures. Why is that? Especially when Jerri Ward claims that EVERY physician and nurse outside the current hospital is horrified he has not received a trach or a g-tube. If this is true, why has he not been transferred to those hospitals in order to receive a trach and a g-tube? Again, he could be transferred to another hospital to receive these procedures. After receiving these procedures, he could be transferred somewhere for lower care.

So when you post that he is too ill to be transferred, you are incorrect. When you ask the question if it is a way to 'keep him too fragile', you are making inflamatory statements to show your dislike for the current law. I might not like the law either, but stop posting garbage to support your cause!!!

woundedpig said...

I am a hospital-based pediatric physician and have experienced many situations over 25+ years that put a dagger in your argument that parental autonomy should always trump the position of the physicians involved and the carefully considered conclusions and recommendations of an independent, multidisciplinary ethics committee.

I will share some of them with you:

1.A father asked that support be withdrawn in the case of his 8 month old infant who presented in shock, coma and soon developed multi-system failure. He eventually developed kidney failure. Family was reticent to consent to dialysis if he was "just going to turn out to be a vegetable." The physicians were not comfortable with this and pressed for the dialysis. The family’s argument remained the same. Consent was obtained with some difficulty and dialysis was started, which turned things around, saving the baby's life. The final diagnosis was intentional poisoning with ethylene glycol (antifreeze). The father received (only) a 40 year prison sentence. The baby had a normal outcome.

2. A mother wanted to give alternative medicine therapy to her child who had a form of leukemia with a 95% long term cure. While this was being negotiated with the attending physician, the mother took the child out AMA (against medical advice) and went to Mexico to get Laetrile therapy (a peach/apricot pit extract which is poisonous.)The child had a leukemic crisis, almost died before being found and returned to the US to receive appropriate therapy, which resulted in a cure.

3. A 3-4 year old boy of an Asian family had refractory seizures due to meningitis requiring therapeutic drug coma. A number of attempts to bring him out of the coma led to recurrence of seizures. It appeared that the boy would be left with significant brain damage. The family asked, then demanded that care be withdrawn. The physician staff resisted, and recommended that more time be given. The father relented, and eventually the child went home with a hemiparesis and occasional recurrent mild seizures. The child received poor followup, was neglected and eventually went into foster care. It was then revealed that this child was the male heir and, in the fanily's culture/custom, "had to be perfect" according to the family. The child received rehab and was able to go to school with his friends.

4. A robust and precocious (in terms of development) 11 month old girl had a cardiac arrest out of the blue and suffered severe brain damage. The biologic father, a minister in training who did not live with the mother, asked a number of times early on in the course whether it could be determined by autopsy whether the child was smothered. His influence on the mother contributed to a conflict with the physicians regarding end of life decisions. The baby met all criteria for brain death except for respiratory effort which appeared after 5 minutes (!!!) off the ventilator. The physician staff and ethics committee recommended that ICU life support be withdrawn. The family refused. The baby received a trach and Gtube eventually and went home on a ventilator. There was other evidence of foul play, but not enough for arrest/indictment.

You get the picture. In my professional life I have experienced only one situation similar to the Emilio case in Texas. I attribute this to the skills, compassion, and communication abilities of my colleagues and I, and to the love and compassion of the parents making those difficult decisions.

I have experienced many other situations similar to those described above in which the family's wishes were resisted, sometimes with involvement of Child Protective Services. I have experienced countless other situations where the family/parents could not begin to focus or appreciate the plight of their own child because of factors such as mental illness, guilt over the circumstances of the injury or illness, conflict between estranged parents, cognitive limitations of decision-makers, etc. I have seen many cases in which parental decisions were definitely not in the child’s best interest, and instead would have harmed the child, limiting his/her future potential.

Compassionate staff in children's hospitals are tremendously skilled at helping families arrive at end of life decisions. I have established the practice of meeting with families weeks after the decision is made to withdraw life support. I always ask how families feel about the decision that was made. All (100%) have said that it was a terribly difficult decision, but that they are at peace with it. Not one has ever said that they had made the wrong decision. A number of times the family expressed tremendous worry and regret that they might have allowed their child to suffer longer than necessary. I always reassure/remind them that all efforts were made to treat pain and discomfort.

The pendulum has swung too far toward parent autonomy. There are now laws on the books in several states that are referred to as "physician conscience" laws- intended to protect and give relief to physicians being requested/forced to intervene medically in situations that violate their integrity, ethics, and oath as physicians. This is why futility statutes like the Texas law are needed. The Texas law may not be perfect- the revised statute came out of committee late this week and will go to the Senate for vote next week. It should be passed without difficulty, as it is a good compromise effort that addresses the concerns of the disability community, family advocates, physicians, hospitals, and received broad support from religious leaders. It is an improvement over the 1999 law in every way.

I am therefore encouraged and pleased to see that the improved version of the Texas futility statute will be approved next week, during the court deliberations on behalf of Emilio. It is a fitting irony and will be a fitting conclusion to what has been a sad and sorry episode of human behavior by the extreme activists and operatives who have manipulated Ms. Gonzales, suffocated the life stream of a little boy, and demonized the caregivers who have been the baby’s only advocates.

Wesley said somewhere that he believes Jerri Ward, because she has never given him a reason not to trust her. Well, Wesley, I guess you are either easily duped or really just don’t care about the truth, as long as “the crowd you run with” is able to leverage and take advantage of the deceptive, one-way flow of lies masquerading as facts for your own purposes. The whole house of cards will come down on May 8-9, whatever Judge Herman’s decision is. The truth will come out, with videos and pictures. I just hope and pray that Judge has the courage to act on behalf of Emilio, not the manipulative forces who are keeping Emilio from arriving in the arms of Jesus.

Carrie K. Hutchens said...

woundedpig, once again you have posted a prepared statement that is not in response to my specific articles and/or blog posts. A prepared statement that is obviously self-serving and quite intolerant of other people's beliefs and positions.

You feel that your examples put a dagger in my arguments? You obviously have no clue as to what my position is, let alone what my arguments are.

While the Texas Futile Care Law totally wipes out the rights of the parents to make decisions for their children and gives it all to the doctors, hospitals and so-called ethics committees, you dare to say, "The pendulum has swung too far toward parent autonomy."?

(What about Andrea Clark?)

Your post is talking down to others, as though your professional life and experience has somehow made you more knowing than the rest of us creatures out here, so we need the likes of you to make the right decisions for us because we are too lacking in experience and knowledge to wisely do so for ourselves. How did I ever make breakfast without you here to show me the way?

(What about Andrea Clark?)

Poor you, and other physicians, if a challenge to your position has you so distraught as to need "physician conscience" laws when it comes to fighting for life. Yep, those affected parents, patients and families asking questions, rather than taking a physician's word as gospel, must be one heck of a traumatic experience to those who believe as you and yours. Do you take anything for it?

(What about Andrea Clark?)

You actually admit the 1999 futile care law is flawed and then go on to give us a pep talk about the new an improved version that you feel will pass without difficulty. I'm happy you are so "encouraged and pleased to see that the improved version of the Texas futility statue will be approved next week..." But while you are admitting there were flaws that needed to be addressed and suggesting you are happy they were, you then proceed to attack those who challenged the very same law that you are admitting is flawed and that you are happy to see replaced.

(What about Andrea Clark?)

You describe the action not to your benefit as, "... a sad and sorry episode of human behavior by the extreme activists and operatives...", yet claim those you are demonizing are demonizing you? How interesting!

(What about Andrea Clark?)

Extreme activist? Is that what you are calling me? Or, am I an "operative"? If the latter, or even if the former, could you please refresh my memory of who I am an operative for and when I manipulated Ms. Gonzales in any way?

With all this in mind, you dare attack the integrity of others?

You posted an apparent self-serving, prepared statement on "Dakota Voice's" blog that attacks the integrity of Jerri Ward and Wesley J. Smith (among others) that might or might not be seen by them. Your intent, I am sure!

Know what the difference is between what any of us say and what you say and post? Do you have a clue?

Whatever I say, you know I said it and where to find me.

Whatever Jerri Ward says, you know she said it and where to find her.

Whatever Wesley J. Smith says, you know he said it and where to find him.

But what about you?

Who are you? -- You that hides behind the posting name of "woundedpig"?

I mean... if you are so righteous and right, how come you aren't willing to sign off on your so-called righteous and right statements with a name that likewise identifies you?

Maybe that is something we should all be asking!

Carrie K. Hutchens said...

Quoting you, woundedpig:

"Jerr’s posts on the net refer to “Emilio’s nurse” who gives the glowing report about Emilio's awareness and purposeful movements."

I would like to see for myself where Jerri said this. Please provide the link!

Dakota Voice
 
Clicky Web Analytics