Wednesday, April 11, 2007

Emilio Updates

Emilio lives! And perhaps the right to live can be decided by the family, and not a hospital committee. Sign the petition to let him continue his natural life's progression...
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Dear Readers,The following update comes from Diane Coleman of Not Dead Yet:"Bob Kafka just called to let us know that Emilio's attorney wassuccessful in getting a temporary restraining order (TRO) untilApril 19, extending the time during which he will continue toreceive life-sustaining treatment.Bob believes that we should continue our efforts to focus onTexas Governor Perry, including letters, calls and the petition,and he thinks that the political activity around the case impactedthe court."

AAPD is writing a second letter to Governor Perry, a copy of whichwe will be posted on the AAPD website by tomorrow at:http://www.aapd.com/News/bioethics/indexbioethics.phpThe petition is located at:http://www.petitiononline.com/emilio16/petition.html

There is also coverage on CNN at http://www.cnn.com/2007/LAW/04/10/baby.care.ap/
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Case Puts Texas Futile-Treatment Law Under a Microscope
Statute Allows for Deadline on Care
By Sylvia Moreno
Washington Post Staff Writer
Wednesday, April 11, 2007; p. A03

AUSTIN, April 10 -- A 17-month-old deaf, blind and terminally ill child on life support is the latest focus in an emotional fight against a Texas law that allows hospitals to withdraw care when a patient's ongoing treatment is declared "medically futile."Since Dec. 28, baby Emilio Gonzales has spent his days in a pediatric intensive care unit, mostly asleep from the powerful drugs he is administered, and breathing with the help of a respirator. Children's Hospital here declared his case hopeless last month and gave his mother 10 days, as legally required, to find another facility to take the baby.

That deadline, extended once already, was due to expire Wednesday, at which time the hospital was to shut off Emilio's respirator. Without the machine, Emilio would die within minutes or hours, hospital officials have said.But the child's mother, Catarina Gonzales, 23, and lawyers representing a coalition of state and national disability rights advocates and groups that favor prolonging life persuaded a Travis County judge Tuesday to force the hospital to maintain Emilio's care while the search for a facility to accept him continues. The group's attempt last week to persuade a federal judge to intervene in the case failed.County Probate Judge Guy Herman appointed a guardian ad litem, or attorney, to represent Emilio's interests and issued a temporary restraining order prohibiting Children's Hospital from removing life-sustaining care from the child.

He set an April 19 hearing on the mother's and lawyers' request for a temporary injunction against the hospital.
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Here is an article talking about the issue from another perspective-- the rights of the hospital to decide if a life is worth using their resources for...
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April 9, 2007, 2:23PM
Unusual Texas law at center of fight over baby's life
By KELLEY SHANNON
Associated Press Writer © 2007
The Associated Press AUSTIN -

As 17-month-old Emilio Gonzales lies in a hospital, hooked up to tubes to help him breathe and eat, his mother holds him close and cherishes every movement.Catarina Gonzales knows her baby is terminally ill and that one day she'll have to let go. But it's not yet time, she and her attorneys contend in their legal clash with hospital officials who want to stop Emilio's life-sustaining treatment. An unusual Texas law signed by George W. Bush when he was governor lets the hospital make that life-or-death call.

The latest legal dispute over the law - Emilio's case - goes to court again Tuesday, the day his life support is set to end."The family has made a unified decision" to keep Emilio living through artificial means, said Joshua Carden, an attorney for the Gonzales family. "The hospital is making quality of life value judgments. That's a huge source of concern."Children's Hospital of Austin has been caring for Emilio since Dec. 28. He's believed to have Leigh's Disease, a progressive illness difficult to diagnose, according to both sides.The boy cannot breathe on his own and must have nutrition and water pumped into him. He can't swallow or gag or make purposeful movements, said Michael Regier, general counsel for the Seton Family of Hospitals, which encompasses the children's hospital.Emilio's higher order brain functions are destroyed, and secretions must be vigorously suctioned from his lungs, Regier said."The care is very aggressive and very invasive," Regier said.

Though the treatment is expensive, the hospital contends that money is not part of its decision. Emilio has health coverage through Medicaid.Doctors and a hospital ethics panel determined the treatment is causing the boy to suffer without providing any medical benefit, Regier said.So the hospital invoked the state law that allows it to end life-sustaining treatment in medically futile cases after a 10-day notice to the family. That deadline was voluntarily extended while the hospital and family tried to find another facility to care for Emilio, though as of Monday none had been located.

Children's Hospital has contacted 30 different medical facilities in Texas and elsewhere.Lawyers for the Gonzales family said they were continuing to work Monday to find another place for him. Catarina Gonzales, 23, who has no other children and cannot have more, denies that her son is non-responsive, as medical caregivers say, Carden said. She says that the boy smiles and turns his head toward voices."Every day that her son is alive and she gets to hold him and be next to him moving around is a precious day for her," Carden said.Carden is working with the family through the Alliance Defense Fund and lead attorney Jerri Ward, who has represented other Texans in similar disputes with hospitals over life-sustaining treatment.

The 1999 Texas law is increasingly under fire from patient advocates, disability rights groups and Texas Right to Life, best known for its anti-abortion efforts.Those varying interests want to change the so-called futile care law to eliminate the 10-day provision for cutting off life support because they say it's not enough time to transfer a critically ill person to another facility. A state Senate committee plans to hear testimony on proposed changes to the law Thursday.

The powerful Texas Hospital Association and other medical organizations largely support the existing law and say it's not frequently used because families and doctors usually agree on the patient's treatment. Texas Right to Life, which is helping the Gonzales family try to relocate Emilio, said it has been involved in more than two dozen similar cases over the past year and a half.Emilio's situation differs from the case of Terri Schiavo in Florida, who was in a persistent vegetative state and at the center of a legal dispute over whether to remove her feeding tube. In that case, family members disagreed with each other about the course of treatment. Schiavo died after her tube was removed in 2005.

Texas is one of the few states with a timetable allowing hospitals to decide to end life-sustaining treatment, according to studies cited by activist groups. In Emilio Gonzales' case, attorneys for both the family and the hospital say the boy would likely die soon after his ventilator is shut down.Last week, a federal judge refused to intervene and left it to the state court where a lawsuit was pending that seeks to declare the Texas futile care law unconstitutional.

What is immediately at stake before an Austin judge Tuesday is whether a temporary restraining order is granted prohibiting Emilio's life support from being cut off by the end of the day."We feel that the original decision is right, and it's time to proceed," said Regier, the hospital's lawyer.If the hospital is allowed to go forward, the life support equipment would likely be turned off during the day Wednesday when the family can be present and have the aid of social workers and chaplains, he said.Carden argues that Emilio's death by asphyxiation would be painful. He said the law prevents hospital workers from even giving the boy the drugs death row inmates receive to help them as they are executed by lethal injection."It's not like he'll just drift quietly off," he said.

5 comments:

Essequibo said...

Thank you so much Arlene Wilson for your energy, your awareness, your love. The richest blessings of the most high upon you. Thank you.

Future Doc Wilson said...

Thank you for your kind words!

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...

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.

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