Thursday, April 26, 2007

The Baby Emilio Debate


Emilio Gonzales is a 17 month old with a rare genetic disorder called Leigh's disease. According to WebMD and other sources I've read, this is a neurological disease in which the entire nervous system deteriorates with symptoms showing themselves as early as three months old.

There is no cure for Leigh's disease. As the disease progresses, all of the muscles in the body progressively get weaker, including the respiratory muscles. As breathing becomes more difficult, it requires being put on a ventilator to stay alive. This is the stage that Baby Emilio is at right now.

Who should decide whether to remove life sustaining treatment from this infant? The interesting key point about the Baby Emilio case is that the hospital, according to Texas state law, may withdraw life support if medical experts deem it inappropriate. This is even if the parent, in this case, Emilio's mother Catarina Gonzales, wants the treatment continued. (Cnn.com)
The case, and the Texas law, have divided medical ethicists. Art Caplan, an ethicist at the University of Pennsylvania, supports the Texas law giving the hospital the right to make life or death decisions even if the family disagrees. "There are occasions when family members just don't get it right," he said. "No parent should have the right to cause suffering to a kid in a futile situation."

But Dr. Lainie Ross, a pediatrician and medical ethicist at the University of Chicago, says she thinks Emilio's mother, not the doctors, should be able to decide whether Emilio's life is worth living. "Who am I to judge what's a good quality of life?" she said. "If this were my kid, I'd have pulled the ventilator months ago, but this isn't my kid."

The law, signed in 1999 by then-Gov. George W. Bush, gives Texas hospitals the authority to stop treatment if doctors say the treatment is "inappropriate" -- even if the family wants the medical care to continue. The statute was inspired by a growing debate in medical and legal communities over when to declare medical treatment futile.
Issues of medical ethics have always fascinated me. I wrote about The Ashley Treatment back in January, and up to now, that post has generated over 50 comments (that's huge for me) and continues to be one of my most viewed posts on a daily basis. I always feel weird quoting myself, but here's what I wrote back then....
Ethics always lags behind science. When that happens, the legal system and possibly even the government get involved. And, that's where things get ugly. Things get more political. The activists with political agendas get energized. I won't be surprised if this very issue is inserted into the 2008 US Presidental campaign - Remember Terri Schiavo and the end of life debate? Remember Michael J. Fox and the stem cell debate?
The government already got involved before Emilio Gonzales was even born. I certainly hope that the politicians and the activists on both sides will not get involved in this debate. Just to let you know, from the legal point of view, Baby Emilio's case is in the court system with the next hearing to take place in 12 days on May 8th.

Now, people are probably not going to be surprised by this, but I would have to agree with the hospital docs on this one. My disclaimer is that the only information I have is from news reports. Of course, I'm not there and I don't have any first hand knowledge of the medical portion of the case.

Here are questions to ask yourself as you sort out how you feel about The Baby Emilio Debate:
  • When it comes to making medical decisions on stopping life support for young children and infants, who should have final say (hospitals or parents)?
  • If there is no hope for recovery, how do you know how much suffering you're causing by the life sustaining treatments that are being done? How you know how much benefit you're gaining?
  • How do you define quality of life?
  • Emilio is on Medicaid, which means that the taxpayers of Texas are paying for his continued treatments. Should ability to pay be a factor in ethical debates like this one?

25 comments:

Anonymous said...

The infant's life, as mechanically prolonged, is causing needless suffering by both the infant and the mother. If there is no hope, other than the unexpected 'miracle', then reason should prevail.

This illustrates the continued importance of religion and a strong social network of helping people to whom the greiving parent can turn.

Anonymous said...

If the parent could pay, this wouldn't be a question. Since the parent cannot, ultimate responsibility lies with the representatives of those who are paying, which is to say the hospital. If they deem treatment is futile, then the ventilator should be shut off.

No one can harvest your organs without permission, even to prolong the life on an infant, why should harvesting your cash, earned with your blood, sweat, and effort be so different?

Personally, I don't believe the child should have been put on a ventilator in the first place. Having a child demands hard choices, and I fear some people simply aren't capable of making them.

wolfbaby said...

Not to offend doc but two of those questions seriously irritated me. Specially the last one. Money should never be a factor as to if children are treated.

Now... it's sad that we have to ask these questions.. and make these decisions.

I think every effort should be taken to help the parent make an informed decision before trying to wrest the choices from them. Part of the healing for a parent is learning to make those choices.

Beth said...

anon

Im rather surprised you can equate your hard earned cash and a childs life

How come it dosn't surprise me you posted that under anon.

Dr. A said...

The first commenter above made a reference to religion, yet implying that the resuscitative measures should be stopped. I did want to share an article from CBN News that states that religion should be the reason to keep the treatment going. Just a different point of view.

In regards to finances guiding medical treatment, I apologize if that offends people. But, unfortunately in the United States, this is a harsh reality that I see every day. Of course, when it comes to acute hospitalizations, few hospitals would kick a child out for inability to pay.

But, just for argument's sake, some would say that Medicaid monies could be better utilized that in cases of making a child suffer to prolong his life. Please don't reach through your computer to choke me. But, when it comes to ethical debates like this, sometimes we have to be brutally honest to try to come up with a solution.

When it comes to outpatient treatment, the intersection of finances and medical care is less dramatic, but, I feel, more important. Everyday, I see parents who do not get their kids asthma/allergy medications because they cannot afford them. Lack of treatment will eventually lead to hospitalizations that could have been prevented. I could share more examples of children not getting the medicines or treatment they need because parent's say they can't afford it. It's definitely a sad situation.

Nurse M said...

The ethical issues you have discussed in this post is something that I deal with (unfortunately) on a regular basis. I have thought about this dilemma a LOT.. maybe not with this particular disease but in general. Who should decide about futile life sustaining treatments? I still have no answer. Should it be entirely up to the parents- NO. Of course it is their child but their vision is clouded with love and affection. (I can attest to this.. a baby that I have grown quite fond.. well attempts were looking to be futile. Even being a nurse that has taken care of this baby for awhile- I wanted the baby to continue to hold on. Not because it was the right thing for the baby to do but because I wanted her too, which isn't a good enough reason. I was the nurse.. not even the parent and I was personally affected and emotionally involved). While the decision shouldn't be solely up to the parents it should not be solely up the doctors either. I think the best way to handle this situation is with the child's doctors, the family, and an (unbiased) ethic committee involved.

Speaking of suffering and benefits... I feel it is almost unmeasurable. Who are we to decide the quality of life for another individual?

As for your last question... finances. That is a tough question without any real answer. I feel that in the once in the hospital finances should not be an issue on whether we treat or not, however, futile attempts of life sustaining treatments ... well, couldn't the money go to help save someone else? I don't know.
Again I don't believe there are any real answers to these questions. This is something I have also thought about a lot because approximately half of the babies in my unit (because of the area I work in) are uninsured.
(I plan on doing a full post about these issues in the next couple of days).

Dr. A said...

Hi Nurse M, You have a very unique perspective on this topic. I look forward to your post on this.

coaster1robert said...

I would keep the baby alive,we don't know enough about this rare medical problem,just to end the life of this baby.as far of money,money should not be a object,we can't allow selfishness to enter into this medical problem.

Dr. K said...

I think that the people who are offended by the money-life debate are the people who are not looking at the bigger picture. We are not saying "pull the plug" on a child who will pull through and get better. We're saying to stop torturing a child who will live only a short while longer, while on a vent, in severe agony.

This is not a young and healthy adult with a curable decision; this is a child with a terminal illness and ZERO chance of recovery. Why not use our money to help those who we can help? Why not use our resources?

If this wasnt a baby and was a 90 year old, would you think differently? Why? Terminal illness is terminal, is there any reason a 90 year old has less right to live than an infant?

I think ultimately that the hospital needs to make the decision. This is why we train doctors. We take an oath to "Do No Harm", and i believe this vent and ICU care is more harm than good. The child will suffer through invasive procedures, infection, bed-sores, and dozens of other horrible conditions and situatons.

Let this child die with some dignity.

Or, give the family the option of paying for whatever care they see fit on their own if the hospital (hell, if the TAXPAYERS) say its not to continue

I bet if mom had to foot even a part of the bill she'd be quick to pull the plug. Instead everyone else's children's care will increase in price and decrease in quality because of one hopeless cause being kept alive against God's will.

If God wanted this child alive, he'd not have afflicted it with such a condition. There is a reason, stop fighting it so hard.

Judy said...

I'm going to take the last question first. We have a finite number of dollars for health care. If we spend them on futile end of life care for people of any age, we do not have them for other needs. When a person is elderly, it is easier to see end of life care as futile. Making this decision for younger people is much harder -- regardless of the reason we think the care is futile. I could not personally make the decision to discontinue life support on the basis of funding for this particular child.

It is easy to say that the family is on medical assistance and therefore the taxpayers are footing the bill. The reality is that regardless of whether a patient is covered by medical assistance or private insurance, we all share the costs. We either pay with our insurance premiums, with our taxes, or with higher overall costs for care that the hospitals must write off. The difference is in who makes the decision - the hospital or some insurance company, so NO, ability to pay should not be a factor. Only a very few of the wealthiest people can truly afford to pay for this type of care.

If one of my children had a terminal illness, I hope I would be able to determine when it was time to quit - with the help of physicians and spiritual advisers. Ultimately, I believe that it is the parents' responsibility, but it is the physician's responsibility to help the parents fully understand the child's condition. Impossible, I know.

Anonymous said...

Doctor A, my first comment (Anonymous 9:23) about religion was intended not in support of this sad but hopeless case for ever-increasing and demeaning life support (Suzanne Vitadamo, Terri Schiavo's sister, suggests "He could possibly be cared for at home if he has a tracheotomy..."), but in it's role as a 'safety net' for the greiving parent to fall into, after the child is allowed some peace.

Of course, prayer is always an option, if one is working the miracle angle.

Malnurtured Snay said...

1. Parents
2. I don't know you can.
3. Not being hooked up to a respirator without a possibility for recovery.
4. Absolutely not.

Dr. A said...

I took the words of the first commenter out of context. Sorry about that.

Great discussion on this topic. Thanks to everybody! I hope the discussion continues...

It's me, T.J. said...

First of all I would like to say that God did not afflict this child.

God does not do those kinds of things. He allows us to make choices and allows us to suffer our consequences. Since the Fall of Man, the world has been suffering from the lack of God in our presence. This is where disease and other imperfect things come from, because God had to leave earth and could not live with the sin of man.

With that said, I would have to state that if the parents of the child are believing for a miracle, who am I to take away their hope? If the parents are praying that God intervenes, then certainly God can choose to do so. Whether he grants a miracle or a merciful death it would be left to His infinite wisdom.

And while many want to make part of the issue at hand about finances I don't believe that is the true essence of the problem. For if finances were such a concern there wouldn't such a network of social services available via the government officials that we vote into office. For certainly we have made billions of dollars available for those who can't afford the basic necessities of life. If we want to make changes in who we pay for, what we pay for, and how we pay for then maybe we should begin that discussion in preparation for the future. However, this family is faced with today, as well as its realities.

Why was the child put on a ventilator to begin with if the future was so grim? Could it be that there is no dignity in dying a death from suffocation? Where is the dignity in dying anyway? There isn't even dignity associated with death through euthanasia.

If the disease will continue to progess as predicted then the disease will advance to the autonomous nervous system. When the nervous system can no longer support the beating of this child's heart then death will ultimately take place.

It is during this short while that the mother of this child can most certainly try to salvage what time that she has on this earth with him. Her love cannot be diminished by the poverty of her life nor by the gravity of his disease.

Maybe we shouldn't be thinking about dignity in terms of those who face death, but in terms of those that are faced with living beyond the grave.

later...

Dr. A said...

Thanks TJ for those passionate words. I received a lot of e-mails today with those same sentiments.

Anonymous said...

TJ has fallen into serious heresy in arguing that God "had to leave the earth" because he "could not live with the sin of man."

First, within the Judeo-Christian tradition (which your reference to the fall indicates), God is considered omniscient and omnipotent. If he "had to" do something, it's because he chose. There is no entity to compell that God.

Second, within Judaism, there's an expectation that the messiah will come. That means God can "live with the sin of man." Within Christianity, the idea is that Jesus has already lived with the sin of man.

Logically, if there's an omniscient, omnipotent god, then he either doesn't care what happens on earth or has done what happens on earth.

Or are you really saying that this kid made a choice and is paying for that choice with this illness? What kind of benevolence would give any child this death in a sort of revenge for the mistake of a long gone forefather?

Anonymous said...

To answer the first question...first and formost...the parents should hold the right to decide what sort of medical care (if any) their child should receive.

We dont know how much suffering or lack thereof he is suffering. I think that this is part of the curse of the ability to sustain people way beyond our ability to use that knowledge responsibly. Are we really better off prolonging life? Are these medical advancements really helping us or cursing us in the long run?

With that, I dont believe God is going to call that little one home one minute sooner than He plans to-or allow him to live longer than he was suppose to. Every day is a gift...and with or without medical care...we all live by the grace of God giving us the time.

As Americans, we spend so much money on things that are not important (just look at the houses lived in, cars driven, tvs watched and all the ways we humor and entertain ourselves)....Who are we to even question whether we should pay to sustain a life of another human? Is the value of a person's life (whether they are sick or not) worth more than buying this or that? Is it worth building a new road or a new metro building ?(since we are talking taxpayer's money) Muddy

ELN said...

Wow, immediately this reminded me of David Vetter (the "Bubble Boy"), who had SCIDS. Another Texas case with many of the same conflicts, oddly.

James Jones gave a captivating lecture on the ethical issues for our Hist of Sci/Med dept last year. It was too long ago for me to remember in any detail, but the Vetter case did have issues over whether doctors or the parents should have control, whether to wait and cross fingers for a breakthrough treatment, and about what to do concerning David's emerging psychosis as he was forced to age in such an isolated, one-dimensional world.

Fascinating case, but an incredibly heartrending situation.

Cathy said...

Well, if our Govt. is so wealthy it can afford to refuse 800 million dollars offered to it in foreign aid donations, following hurricane Katrina, then I don't even want to discuss the dollar amt. one childs medical care is having on our govt. When we can turn down that kind of money, then we are NOT in any financial turmoil.

Dr. Hebert has that story posted.

Oh and i imagine this mother would be more than happy to pay for his medical treatments but she doesn't have the money! I get scared over what is happening to us (morally) when I read that children should be allowed to die if their parents can't afford medical care.

Ros said...

(I'm anon#2 out of town for the weekend, signing in so I don't take %&$^ for the anonymous bit)

Inevitably people who have never lacked for money are the first to say 'Spend whatever it takes, no matter the prognosis.' From the other end of the spectrum, let me just say, money runs out. Every dollar you spend propping up these parents in their mad incapacity to make a rational choice is a dollar taken away from a case with an non-zero recovery rate. If you don't believe it runs out in the US, know that it runs out in the rest of the world, and their children are no less capable of pain and suffereing than ours.

Words like 'child' are loaded with connotations that, in this instance, fail to have meaning. Only in his physical shape does this 'child' resemble an actual child, with a future, with hope, with, for example, cancer. That child, the one for whom money makes the difference between seeing Mommy's smiling face at least one more time and never again, that child deserves the dollars wasted here.

It's a hard choice. An ugly choice. Most people will, as made clear here, retreat behind religion or any other authority rather than make that choice themselves. Myself, as a parent, I believe it's a choice I must be prepared to make.

Speaking to religion from my personal perspective, no *person* who had the power to prevent this occurrence and failed to do so would be a fit moral authority. By definition any god is omnipotent and so could prevent this occurrence without consequence, hence no possible god is a fit moral authority. It cannot happen that omnipotence, morality, and tortured children coincide.

woundedpig 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

woundedpig 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

NeoNurseChic said...

Just read this from Grand Rounds, and as you can probably imagine, I have a lot I want to say. But unfortunately have to be up in 5 hours for work. Life has been a little crazy lately, and I haven't had any time at all to read/write in terms of blogging. However, this one hits a nerve in terms of having strong feelings on the topic! Probably similar to your own feelings on it, really....

I hate watching futile cases continue on....it hurts everyone involved - everyone. But I really do want to write a more thought-out post at a later time when I actually have time to think about it. Going to be a crazy next 48 hours, but maybe over the weekend!

Hugz,
Carrie :)

Anonymous said...

I can't believe some of the points made here. I would request some to read Payne and tell me if you feel the same way about infants. Wow. You would take a human life because of money. Really, why should we even feed the poor. If we just starved them, it would be a much faster way for us to stop paying. I am so shocked I can hardly type. This was a mother's choice. Any other care issues were for her to make. Why should this one be any different? For the medical professionals on this blog, remind me never to get ill in your hospital if I can't locate my insurance card.

Rik said...

Money is a legitimate issue. No, I don't want my dollars being used to take care of someone else when I didn't have anything to say about it. A Living Will to skip artificial life supports is a choice we have made. If you don't want that choice, then please, finance it yourself. Cold, cruel? Perhaps, but it's not me. That's life, it really is.