This Blog considers assisted suicide/euthanasia, bioethics, human cloning, biotechnology, radical environmentalism, and the dangers of animal rights/liberation. My views expressed here, as in my books and other writings, reflect my understanding that the philosophy of human exceptionalism is the bedrock of universal human rights. Or, to put it another way: human life matters. (The opinions expressed here are my own and not necessarily those of any organization with which I am affiliated.)
Baby Emilio Gonzales will continue to receive life-sustaining treatment, at least until May 8, as the hearing to obtain a permanent injunction against the imposition of a futile care withdrawal of treatment has been postponed.
Labels: Baby Emilio
posted by Wesley J. Smith @ 8:53 AM
42 Comments
I am a Senior Fellow in Human Rights and Bioethics at the Discovery Institute and the author of 12 books, including A Rat Is A Pig Is A Dog Is A Boy, which is relevant to the issues considered by this blog.
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42 Comments:
In a recent article Rev. Tadeusz Pacholczyk, a neuroscientist on staff at the National Catholic Bioethics Center in Philadelphia, is quoted to have said: "There is a clear downward trajectory here. This child is dying. The question is what do we have to do in order to provide proper care to a dying individual." In cases like these, he said, the church teachings are clear that removing Emilio from life support would be morally acceptable.
I don't understand how anyone can say that a child who is capable of developing and living for six years is, at the same time, in the process of dying.
In another article Dr. Joseph Graham of the University of St. Thomas in Houston, and the current president of Texas Right to Life Committee, states: “Baby Emilio is not dying in any immediate sense."
Rev. Tadeusz Pacholczyk is one of the folks we can usually trust in these maters, so I am concerned about his position in this case.
Fredi: I know Fr. Tad. Based on what you are writing, it seems he said that it would be morally permissable to withdraw life-sustaining treatment in this case, which depending on the circumstances and the suffering versus benefit analysis of each case, would be in keeping with Catholic moral teaching (as I understand it as a non Catholic). (Recall that JP II didn't accept life-sustaining treatment at the end of his life.) But this isn't the same thing as a hospital ethics committee FORCING that decision on a patient/family in a futile care controversy.
Perhaps you should contact Fr. Tad and ask for a clarification.
Thanks Wesley. Exactly! It is the patient or his/her legally designated representative for whom it would be morally permissible to withdraw life-sustaining treatment under certain circumstances, neither the doctors nor the hospital. In this particular this case, I question the diagnosis that the patient's death is imminent. I have also read that he could possibly be cared for at home if he has a tracheotomy, which would eliminate the need for a respirator.
I always just point out briefly when this subject comes up that JPII did have an NG tube in his last days of life. Let's remember that a phrase like "life-sustaining treatment" does to some people's minds include _any_ sort of ANH, any "tubes," even when it is administered nasally and not by a surgically implanted tube.
What surprises me is that Fr. Tad should be so sure that Emilio is in some immediate sense "dying." I would think he might want to be a little more cautious about saying that.
Fr. Tad has not been given all the facts. Dr. Dennis Doody, a pediatrican who has actually read Emilio's chart, wrote the following"
To Stephen Napier
National Catholic Bioethics Center
Dear Mr. Napier:
Thanks for the reply. I have concerns and questions about the quote attributed to Rev. Tadeusz Pacholczyk in the article that you just sent me (below). It was the use of the word, “dying” and the statement that the patient has a diagnosis of a “terminal disease” or “a rare, incurable disorder.”
I know what the word “dead” means but I do not know the meaning of the word “dying.” We are all dying. If this patient continues receiving breathing assistance and food and water and if he lives several more weeks, months, or years, what will we think in retrospect about using the word “dying” in April, 2007? The use of the word “dying” seems to be the crux of the matter for Fr. Pacholczyk. The word is inexact and its meaning is nebulous. How long before any patient dies do we use the word “dying.” I have learned not to use this word about very sick patients.
The other concern is the statement that there is indeed a diagnosis of a “terminal disease” and “a rare, incurable disorder.” In fact, there has been no definitive diagnosis to this point. I know this because I have been in direct contact with people in Austin. I am sure that no one at the hospital asserts that they have established a definitive diagnosis of Leigh’s disease as all the tests to confirm the diagnosis have been negative. I think what the hospital is saying is that they think it is likely that the patient has a disorder like Leigh’s disease. If pressed to say that they have established any underlying diagnosis, they will have to admit that they have no documented proof for this diagnosis.
I do think that they will admit in court that the patient’s basic life functions are stable: renal, cardiovascular, endocrine, pulmonary, etc. In other words, the baby has need of ventilatory assistance not because of intrinsic lung disease but due to the baby’s neurological impairment. That was the case with patients like Christopher Reeve. I do not remember anyone suggesting that he give up his ventilator because he was neurologically impaired.
The family would be glad to leave the hospital if they could do so safely: i.e., have a tracheostomy. The hospital is offering only one option: discontinuation of the ventilator which would mean immediate death for a child who perhaps has more time to live and is not “dying.” I think we all need to think about this case some more. Please let me know what your agency thinks about these comments. I am trying to think the right thing and do the right thing every day. I think that some of the people who are making statements about the case do not know all the facts. Perhaps the bishop of Austin was not provided objective information since apparently he was briefed by the people at the hospital only. I understand that the Mother’s reluctance to interact with the bishop at this point is because she knows that he took the hospital’s side after speaking with hospital and others but not her, her representatives, and the baby’s guardian ad litem.
Yours truly,
Dennis M. Doody, M.D.
People also seem to forget that the Pope also had a tracheotomy, which is what we are asking for Emilio.
Jerry, I'm sure that Dr. Moody understands that hospitals don't do tracheotomies. Neither do pediatricians, neurologists or most pulmonologists. I believe you'd need a surgeon for that.
(A google search on tracheostomies yielded this Chest article on pulmonologist's usual skills and training) and this one, about the actual procedures.
Note that the absolute contraindication is a patient who needs "extreme ventilatory and oxygenation demands." When Emilio was having the repetitive "leaks" (pneumothorax) mentioned in the Ethics report published on "North Country Gazette" last month, he was not a candidate for a tracheostomy.
He may be a candidate now (and I wouldn't be surprised if the encephalomyelopathy allowed his muscles to become less stiff, easing the ventilator pressures needed) but I doubt that any of the docs already on his case do the procedure.
As you say, Jerri, Emilio is stable, now. Another pneumothorax or the intervention to perform a tracheostomy carries great risk.
Perhaps Dr. Doody should read this article on the syndromes of mitochontrial disease syndromes:
Scaglia, et al. "Clinical Spectrum, Morbidity, and Mortality in 113 Pediatric Patients With Mitochondrial Disease", Pediatrics 2004;114;925-931
I'll be glad to forward a copy of the article to anyone one who emails me.
LifeEthics: Furtner intervention presents "great risk" as he is now stable? Of what? Death? But cutting off life sustaining treatment, which you support, would result in death.
Again: The issue is coersion, of bioethics committees substituting THEIR ethics and values for those of patients and families.
Actually, Wesley, what I've argued is that the doctors are using medical judgment at each step and tried to explain my belief. Lord knows, I speak up when I believe doctors are unethical. Why wouldn't I when I believe that they are being ethical?
As organ system after organ system fails, these are times to reconsider interfering with what should be a "natural death." Or as close as is possible to a natural death in the ICU at a tertiary care center.
In fact, each intentional act of intervention, such as adjusting IV components and the ventilator settings, placing the suction tube into his airways to clean the lungs, or inserting the catheter to empty Emilio's bladder is a point of decision between right and wrong. The doctors and nurses have been remarkable, in my opinion.
The doctors are not "killing" Emilio, the nurses are not standing quietly while the child is caused to die, and hospitals and administrators are unlikely to interfere to push doctors to cause death. Hospitals most certainly do not practice medicine.
Specifically, I've argued that, if the ethics committee report published on North Country Gazette is the true report, no one "refused" to place a tracheotomy. Instead, the ventilation pressures and oxygen necessary according to the report - as well as the unstable state caused by each incidence of a pneumothorax - were an absolute contraindication.
There's also the point that none of the doctors that Jerry is accusing are likely to do trachs as part of their practice.
Further, if the report is true, I wouldn't seek a consult. Any ethical surgeon could see that the tracheostomy - even after the pressures and oxygen needed decreased - would be a painful stressor that would be cruel and futile. To do such a cut would be to inflict pain on a child who has progressive encephalomyelopathy and to cause pain with no hope of improving his situation. It is wrong to cause an injury to his body that he won't live to heal so that my actions cause his last days to be full of more pain than he already has. To do so when there's a chance that he might deteriorate again is to speed his death and is also unethical.
(It's a shame that the mother didn't agree to the procedures before the rapid deterioration made him unstable and confirmed that he has the more aggressive form of mitochondrial disease. On the other hand, the stoma might have made treating him during these episodes even more difficult.)
I've also advocated for withdrawal of injurious procedures (such as the ventilator that is or was causing pneumothoraces) or withholding of new actions -- and especially, new levels of intensity in the interventions such as dialysis -- if the patient deteriorates further. To remove the ventilator when it is causing harm is not killing him - to remove the oxygen from the room would be, though.
I've also tried to supply information that answers the claims that the doctors "aren't sure" what Emilio has and that they meant him harm when they stopped the thiamine.
I note this from Life Ethics in a post from last month:
"What would I do? I would suggest that the mother and the docs adopt a strategy of "this much and no more." Give Emilio droppers of fluids by mouth, to keep his mouth moist. Hold him as much as possible. Continue the ventilator, but stop placing the chest tubes and stop changing the ventilator settings. Do not add new medicines and do not resuscitate when the heart stops."
What's this "give Emilio droppers of fluids by mouth, to keep his mouth moist"??? Hmmm? I may be over-reading, but this reads to me like part of a strategy that would involve withdrawing full-scale tube feeding. Does it? If so, that's pretty bizarre. Keep the ventilator (as long as it isn't per se causing harm) but reduce fluids to just oral droppers full? What's that all about? I'm gathering from the rest of Dr. Life Ethics's posts on the subject that she may believe that Emilio's food is poisoning him. She says things about a build-up of toxins, apparently in part from food that hasn't (_she_ says, on the basis of nothing in any report she has ever cited) been processed correctly.
So let's face it. This isn't just somebody who is recommending not increasing or changing settings, not reinflating lungs. If my interpretation is right (and I apologize if it's wrong) this is somebody advocating slow dehydration with only mouth comfort measures and lots of holding. I guess that's what they call a "natural death"...
Lydia,That post was quite a while ago, when I thought Emilio might have been suffering liver and bowel damage which can go along with the severe forms of mitochondrial disease. That was advice only for "when this happens," if he couldn't tolerate tube feedings. (That was when he was having the pneumothoraces. As I explained, the lining of the stomach has some of the fastest growing cells, and any reduced replacement can be devastating.)(I might still give him something by mouth, even with the feeding tube and IV feedings - good tasting popsicle chips.)
What we need to ensure as best as we can is that he is as comfortable as he can be. Hands on comfort is very important, both to the patient and the caregiver. See this post for my philosophy on caregiving.
Life Ethics,
I shd. say that to anyone who read that post it looked like you were pretty confident that your conjectures were correct and that this _was_ the situation. It didn't look like an "if" at all. It appears that you were quite incorrect, for if he'd been unable to process food that long ago in the way you _guessed_, I suspect he would have deteriorated much farther by this time and perhaps simply be dead.
So, it just appears to me that you went out on a limb with conjecturing and were plain wrong. And a good thing the advice wasn't heeded, too, or the little guy would have been dead of dehydration long since because he would have been given only droppers of fluid to keep his mouth moist.
Shouldn't that be a cautionary tale about the type of help you're trying to provide here by explaining to everybody else why the doctors are right about this or that, what's really happening to the child, what the doctors are thinking, justifying what they are doing? I understand you're a professional yourself. We all get that. But the conjectures, made at long distance about someone you've never seen, conjectures that sometimes go quite a ways beyond the incontrovertible evidence seem to me...ill-judged.
Your present effort as I understand you is to convince all of us that Jerri and the boy's mother shouldn't be trying to get a tracheostomy and that (here we go again) the reason they're having so much trouble getting it is either because they are too dumb to realize they need to find a surgeon or because they just don't "get it" that he has major contraindications for the surgery. If only you could help them understand this, then they wouldn't blame the doctors for refusing to help them find a surgeon, get the orders written for the surgery, etc. But maybe, just maybe, your conjectures that supposedly justify the doctors are incorrect this time, too. It's a possibility at least worth thinking about.
Lydia, why do you think no one's done a tracheotomy?
Well, Jerri says up above that they would leave the hospital if Emilio could do so safely, "i.e., have a tracheostomy." Elsewhere she's referred to it as "what we're trying to get for Emilio." And you spend quite a bit of time above talking about a) who does and doesn't do them ("you'll need a surgeon for that"), what are contraindications, whether he was a candidate before and is a candidate now.
What's your point? I'm watching this thing through the Internet just like you are. If he's had one of these before, for some reason they just need another one now, and I'm just missing something, I'm not sure what that changes about my point to you, which was that you should be a little more cautious about making such strong statements at a distance, having been pretty far wrong once about this child--wrong to the point of wrongly advising that nutrition be virtually stopped.
Oh for God's sake!
Lifeethics, you are totally off base and incorrect in your representations. We have had a prominent pulmonologist, who will testify in this case, say that the ethics committee report is not borne out by the chart.
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.
In my book, you have compromised your credibility as a pro-life advocate with your spreading of mis-information and your suggestion that Emilio should be dehydrated to death.
I said that I would give droppers of fluids by mouth to make his mouth moist (and so he can taste something). The dry mouth is a personal worry of mine from observation of other patients.
See, this is how I believe these blow ups happen. And, I'm convinced that if I find the right article, or the right words, I will be able to bridge the gap.
I still don't know the motive that any one believes would lead the the "hospital" - the many individual doctors, nurses, and other very real people who are decision by decision and action by action caring for this child - would "refuse."
And, I believe that the medical facts testified to by 4 different doctors in front of an Ethics Committee and put in an official report would have to be the truth. I know of no other way to explain "leaks," "repeated full and partial collapses of his lungs," or "repeated collapse and reinflation of Emilio's lungs."
Ah, I suddenly get it. Life Ethics's question to me, "Lydia, why do you think no one's done a tracheotomy" was not an implication that someone has done so but rather an attempt to get me to think (because of course, we just must not be really _thinking_) about what _motives_ there probably are in the minds of the doctors that have caused it to be the case that no one has done a trach. Have I got this right? The "why" meant, "So why haven't they? What might they be thinking?" to try to get me to go, "Oh, gee, maybe they have some really good reason for not doing it." Is that it?
Well, I lack that simple, childlike faith that "doctor knows best." Why the dickens are we just supposed to assume blindly that the reasons for not helping Emilio's mom find a surgeon who will do a trach--not offering a referral, for the attending physician's not suggesting this or that surgeon, etc.--_must_ be good reasons? Because these doctors and nurses are caring for the child? That means they must have good reasons for not facilitating this surgery? It doesn't follow.
How do you put droppers of water in this mouth when it is untubated and has a bite guard in it!? He can't even sit in his mother's lap except when the hospital lets her because of the danger of extubation.
EVERY doctor and nurse outside the hospital who I have spoken with is horrified that they haven't already trached and g-tubed him for comfort if nothing else.
But, you have thrown in your lot in with the pro-death doctors by supporting a bill that allows doctors to withdraw life support from PRE-TERMINAL patients. Do you not understand that every mentally retarded patient who needs a feeding tube is at risk with Delisi's bill?
I really don't understand why I'm accused of bad motives in my finding resources and attempting to explain. Maybe that's why no surgeon has volunteered to get involved?
No, I believe no surgeon has volunteered because none want to cut this child.
Lydia, I do believe that I can tell by seeing how well doctors and nurses are caring for a patient whether they have medical reasons to do what they are doing or not doing.
Virtually every order that doctors write is the result of a medical judgment. It can be good medicine or bad medicine and it can be ethical or unethical.
Even with the best care, a patient on a ventilator, a feeding tube, IV's and catheters can end up with infections. But in this case, Jerri assures me that Emilio is better that he was back in February or early March.
So I can be certain that the doctors and nurses are giving excellent medical care. And I believe that care is the best indication we can have about the motives of the people involved.
One, maybe two people may conspire together to act in an unethical way in secret and for a while.
But I don't believe that 4 doctors will tell the same story about collapsing lungs and uncontrolled seizures in an open forum like the Ethics Committee meeting if it can be proven to be untrue. And I certainly don't believe that an entire unit of ICU nurses would stand silent for the months since Jerri first wrote about the case on this blog.
Jerri,
The key words in your statement about the doctors and nurses you've talked to are "outside the hospital." Have you reviewed the Ethics Committee report with each of them?
We use all sorts of comfort care for "oral care" in hospice and the ICU. I've sat by these beds and done my best to do what I can. Moist sponges and ice chips may be more appropriate in this case.
Everyone on the Coalition agreed months ago that the bill needed to be amended to allow more time in all the phases and to ensure that the law can't be invoked to remove artificial nutrition and hydration. Representative Delisi's bill has been amended and will be further.
You have chosen to cast doubt on the doctors caring for Emilio, on the Ethics Committee, to deny the facts in the Ethics Committee report and to repeatedly make disparaging comments about me personally here and elsewhere, just as you've chosen to discuss the child of your client in public forums for months. I don't believe any of this is ethical on your part.
I'm comforted that I've "thrown my lot in" with people whose advice I would trust in other circumstances such as "Father Tad" of the National Catholic Bioethics Center and with the Bishops of Texas, including the Bishop of the diocese of Austin. I would certainly be upset and reconsider if these men and others hadn't confirmed my reasoning.
Are you seriously saying, Life Ethics, that if it would be best for this baby to have a trach, and he wasn't getting one, the nurses would be speaking out to the press or somebody like that? Do you really think nurses are likely to take a step like that regarding the doctors' refusal to pursue a surgical procedure? Aren't they far more likely to believe that it's their professional duty to trust the doctors' judgement?
Leaving aside the question of whether the ethics committee report is accurate about Emilio's condition at that time, it seems to me _eminently_ plausible that doctors should simply stonewall and hunker down in their old-boys' club (ahem) to avoid having this child receive a trach, and that they should do so for reasons _they_ may consider medical but which really are not--quality of life reasons to the effect that it would be better if his mom "let him go."
The most striking new thing in all of this to me is Jerri's statement that he could actually go home if he had the surgical supports. And they won't help him get them? That's _really_ bad.
I'm interested to know more about Delisi's bill. So has it or hasn't it been amended to exclude nutrition and hydration from the permitted withdrawals? Why do I have the feeling the answer is "no" but that Life Ethics will tell us that everyone has such wonderful good will that she's _sure_ it will be so amended...etc.
Lydia, you can watch the proceedings on line at Texas Legislature Online. Go to "Legislative Activity on the upper right side of that page. Go to "Video Broadcasts," House, then find the Public Health Committee video(s) for today. You can hear the real time testimony right this second -- 9:55 AM Central Daylight Time --while the committee is in session and the "Archived" afterwards.
The morning session should be online in full by noon - they are about to adjourn until the House of Representatives meets in full and then adjourns. Then, when the Committee meets again this evening, you can watch all the rest.
Btw, Lydia, yes, the nurses I know would and do influence doctors. Out of all the people at the hospital, I believe that in 3 months or so, someone would have stood to tell us what went on.
If Emilio has actually gotten better so that he is not requiring high pressures on the ventilator, I'm convinced that the attending physician would be begging for help to get the trach and the permanent feeding tube in order to send the patient home. None of us goes through this for ideological reasons. (Remember, it was the surrogate and the lawyers fighting for the end of Terri Schiavo's life. None of her doctors fought against feeding her. Certainly, none of them fought to deny her fluids by mouth.)
"The key words in your statement about the doctors and nurses you've talked to are "outside the hospital."
They did better than that. They read the actual chart. And they noted that the ethics report conflicts with what is in the chart.
So what would it take to convince you, Dr. B., that the doctors really are stonewalling here for reasons that don't stand up to clear-eyed scrutiny? I don't doubt they are sincere and well-intentioned, but it doesn't follow that they are right or that their notion of what is best for the child is really purely medical. Because I've got to say that it sounds to me like you're just determined to back the doctors' judgment here no matter what, that you assume on relatively small evidence that they must be doing the right thing. Isn't that a little...dogmatic?
The problem is the numbers of doctors who said the same thing, the numbers of other people involved, the public report that was further publicized, and the fact that no one has come forward to contradict the report who is involved in the care. Also, no one has stepped in to take over the patient's care.
I just don't believe that a conspiracy to end the life of a child would continue this long, with so many conspirators. Especially if Emilio is better than he was on March 9.
On the other hand, I see unclear medical situations unlike any I've read about or observed described by non-physicians, a 1973 article entered as evidence against the doctors in 2007, and charges that removing the vitamin IV was done to kill Emilio.
I have offered more than once to look at the child and the records and to stand up to the doctors if they are doing wrong. And I certainly would.
By the way, the Committee resumed about an hour ago, if you want watch it live on line. (Requires Real Player.)
The following information was 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- that case involved a patient who did not have a terminal disease, had modest care requirements, and had a true, but severe disability. Emilio is dying from a rapidly evolving, fatal disease without any treatment possibilities, even experimental. 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 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.
Of course Christopher Reeve was never asked that he give up his ventilator because he was neurologically impaired- he had completely normal and full cognitive function and was making his own choices. Dr Doody is a freak and has taken it upon himself to define 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. Pope John Paul gave an excellent talk on this to physicians in Rome, I believe, in ~ 2002.
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.
Harsh omments about funding status and the medical/ethical stance of the hospital were 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.
You are obviously aware of the concern that 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.
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.
You are well aware of the ethical principle that 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.
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?
If you didn't know or chose not to seek out these facts, shame on you for making 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
I recommend an in-depth reading of the resources posted at Serious Health Care and End of Life Decisions
The URL for Serious Health Care and End of Life Decisions is http://healthcaredecisions.blogspot.com
http://healthcaredecisions.blogspot.com is indeed a good source.
In Catholic teaching, the focus in end of life decisions is not just the intervention itself, but the circumstances.
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 kind of extraordinary care and disproportionate application of medical intervention that is not supported by the Catholic tradition.
Not exactly.
Even though the patient is not obliged to use the treatment, medication, or procedure, he is not precluded from using it even though it is extraordinary. Rev. Edward J. Richard
Indeed, Fredi. It may be morally acceptable to remove treatment in this circumstance, but that doesn't make it a moral obligation.
By the way, WoundedPig, whatever records you find on the web do not line up with what is on Emilio's charts. According to his nurse, Emilio has hearing in one ear and smiles and responds to his mother when she bathes him as well as visitors. He draws his legs up in pleasure when she bathes him. He's also never had a chest tube. If you didn't know or chose not to seek out these facts, shame on you for making uninformed statements about such a volatile and sensitive issue.
This is a question of parental rights and patient autonomy. I do beleive bodily autonomy often can go to far, but providing physicians a "get out of jail free card" allowing them to withdraw care without ramifications has been disasterous. I can give you names, they are typically minorities or poor people, who haven't been nearly as sick as Emilio but still had care removed. It's simply too dangerous to let hospitals with economic interests make such decisions.
Let's suppose for a second that economics are not in play in Emilio's situation, notice how most editorials, and WoundedPig, mention the cost of end-of-life care? We can't pretend like this isn't a consideration, especially since this was the rationale behind the Patient Self-Determination Act that manadated pushing Living Wills in hospitals. Living wills were invented in 1969 by Louis Kutner, a pro-euthanasia attorney, for the purpose of acclimating the US to passive (and eventually active) euthanasia and sold under the promise of lowering health care costs. What was the rationale behind the Advanced Directives Act of 1999 in Texas- I can guarentee you economics were a factor in that as well. These hospitals have bills to pay and we can't act as if this isn't a consideration when determining if care should be given to someone who's "quality of life" isn't quite up to the standards of those that sit on the ethics committee.
This is one highly-publicized case of a very sick baby boy; so sick that is sways public opinion in favor of removal of care. I wish Tirhas Habetgiris had gotten an eighth of this publicity. You'd see that futile care isn't just about the extremely ill- only the extremely vulnerable.
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 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."
To respond to your comment about the information on the chart vs the web, I never said that Emilio had pneumothoraces or chest tubes- I said lung collapse - an airless state due to secretions plugging the airway as a result of a total lack of cough, gag, or swallowing mechanisms.
The nurse you are referring to who gives the glowing report about Emilio's purposeful movements 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?
As I said before, 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.
I will respond to you at length later, but a brief response:
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.
Did you somehow miss the irony of this statement in light of this legislation we are currently debating? My family could know full well my wishes, but they would not be honored if the almighty ethics committee disagrees.
And while I don't have a magical proposal to alleviate the healthcare crisis, I can confidently say that killing people at the end of their lives is not a morally-acceptable solution- furthermore, it's not a solution at all. In order for your "ends to justify the means" modest proposal for poor Texas children to work, would it only be the medicaid/medicare recipients who are denied care at the end of life? Removing ventilators from sick immigrants and removing food and water from older people does not guarentee one Texas child an immunization--- so nice try, but completely impertinent.
To answer your personal question: Will I apply the same rules and values to myself that I "impose" on others? I don't view people like myself that value life over money to be the ones "imposing" anything, but nonetheless the answer to that is a resounding "YES", Doctor. I ask myself how I would want to be cared for in each respective situation (Emilio, Andrea, Spiro, Tirhas, Sun, Daniel) and being a victim of euphemized mercy killing is not what I'd desire. I am solidly prepared to protect myself as best as I can against the laws in this state, which frankly would only become worse is Delisi and Texas Alliance have their way. I have taken upon myself to make me especially difficult to kill and I am the daughter of a nurse who knows my affinity for painkillers if there are any doubts at all about whether or not I am "suffering." Even so, my morality doesn't permit the taking of my own life or the lives of others to prevent suffering. We attempt to ease it through medication, but imposing death through medical neglect is not a morally-acceptable option.
Bottom line on your smell test: The Texas Futile Care Law is ideologically and morally flawed, and frankly, I don't trust you or a hospital over my family to watch out for my best interests.
By the way, I am familiar with the Schiavo situation and it's influence on this debate. I know the Schindlers and was one of their lobbyists. I am still in regular contact.
I did not compare Emilio to Terri. Emilio is very ill. Terri was very healthy, only disabled. These are remarkably different situations. Once again- impertinent.
JacqueFromTexas-
I see that you are a true believer. Paranoia, rigidity, mistrust, hate.
Most of all, you just have to be right, which means you can't/won't consider new information or a reasoned argument, not even the truth.
You can just go being the ideologue that you are.
Signing off from your little blog.
sincerely,
woundedpig
Good riddance, woundedpig. We value and honor differences of opinion here at SHS, but not name calling or personal invective. Adios.
Wesley, may I take the pig carcass as a war trophy?
:)
? pig carcass
"We value and honor differences of opinion here at SHS, but not name calling or personal invective. " ??
For true believers, the main conflict will always be an internal one.
I can see your advance directives now- "Please flog my body until it is
unrecognizable. Keep me from the afterlife. Torment my loved ones."
Yes, you have won - ideologues win every argument.
Why does Jerri Ward not respond to woundedpig's comments concerning this tragic case???
Good review, wounded pig. I'm surprised at the response you received - and the lack of response from some quarters.
I would like to know more about the postponement. I heard that the first date asked for was May 28 - or the last day of the session for the 80th Legislature. Why the choice of "sine die" for Emilio?
LifeEthics.org:
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.
To answer your first question, 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.
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