Ethics Committee Report Form
Seton HealthCare Network Neonatal/Pediatric Ethics Committee
Patient: Emilio Lee Gonzales
Date of Consult: 3/09/07
A second consultation with the Neonatal/Pediatric Ethics Committee (the “Ethics
Committee”) was held on Friday, March 9, 2007 at the request of the patient’s
attending physician. The purpose of the consultation was to assist in evaluating
whether it is medically and ethically appropriate to continue aggressive treatment
measures for the patient, in light of his clinical condition and prognosis.
Process Used in this Consultation.
Since the initial consultation with the Neonatal/Pediatric Ethics Committee on
February 19, 2007, there have been multiple conferences with Emilio’s mother and
surrogate decision-maker, Ms. Catarina Gonzales, to discuss his condition and his
recommended treatment plan. There continues to be no consensus between the Ms.
Gonzales and the treatment team regarding the appropriateness of the care being
provided for Emilio. Consequently, on March 7, 2007, Ms. Gonzales was given
written notice under applicable Texas law that a meeting and consultation with this
Ethics Committee would be held of March 9, 2007. Ms. Gonzales was invited to
attend and did attend the consultation, along with the members of the Ethics
Committee, the attending physician, other members of Emilio’s treatment team, and
other invited guests, including members of Emilio’s family and legal and other
advisors representing Ms. Gonzales.
The meeting began with a brief review of Emilio’s medical history and a discussion
of development in his clinical condition and care since February 19, 2007, which was
led by Dr. Alexandra Wilson, Emilio’s current attending physician, and included
information provided by other physicians and other members of Emilio’s care team.
Then Emilio’s mother and her representatives and the members of the Ethics
Committee were invited to ask questions of Emilio’s patient care team. Once all
questions had been addressed, the Ethics Committee then convened in executive
session to deliberate about the information provided and to reach a consensus.
Medical and Background History.
Emilio Lee Gonzales was born at Brackenridge Hospital on November 3, 2005 by csection to a GIPO mother at thirty-five weeks gestation. His apgar scores were six
and eight and his birth weight was 2525 grams. He was cared for in the NICU for
approximately two and a half weeks because of feeding difficulties and apnea. The
patient had no major complications at that time.
At five weeks of age, Emilio was referred to Dr. Jeffrey Kerr, pediatric neurologist
at the Children’s Hospital of Austin (CHOA), for evaluation of unusual head and
eye movements. Although his neurological exam remained generally normal, Dr.
Kerr was concerned that Emilio had profound loss of vision. Investigations
performed included a brain MRI which was normal, a hearing test which showed
bilateral auditory neuropathy, and an electroencephalogram (EEG) which was
abnormal with seizure activity. The patient was started on Zonergan for seizures in
May 2006 following these investigations. By twelve months of age Emilio’s
condition had significantly worsened clinically with evidence of global
developmental delay and decreased muscle tone and reflexes.
In December 2006, Emilio had an intercurrent, possibly viral, illness during which
he decompensated metabolically, following which he was admitted to the Pediatric
Intensive Care Unit (PICU) at CHOA on December 28, 2006. He has remained in
the PICU since that time. His neurological status has continued to worsen clinically.
Multiple MRI scans and MRI spectroscopy were performed, which were consistent
with inherited metabolic disease and the diagnosis of Leigh’s syndrome was
considered by his medical team. The MRI scan on February 12, 2007 showed
significant atrophy of the brain compared to previous scans.
Emilio is ventilator dependent and has not been successful on several occasions to
sustain respiration when extubated and his attending physicians have stated that he
will not survive without assisted ventilation.
Emilio has had multiple blood and urine tests to determine the nature of his
metabolic disease without success. Skin and muscle biopsies were performed which
are only partially available because of the length of time it takes to perform these
tests properly. Multiple ICU physicians as well as neurologist at CHOA have
reviewed this case. Consultations have been obtained with neurologists and
metabolic disease specialist at San Antonio, Dallas, and Houston, who have agreed
with the suspected diagnosis and poor prognosis. He has fluctuating and variable
pupillary reflexes. He is hypotonic and has generally decreased or absent reflexes.
He has no gag reflex. His level of consciousness borders on semi-comatose for the
most part and although he postures to stimulation, the neurologist has not noticed
any withdrawal reflex to pain. His perception of pain is unclear to observation.
Emilio’s treatment regimen has consisted of ventilation via an endotracheal tube
and feedings via a naso -jejunal tube. His medications have included multiple
vitamins and intermittent analgesics given during procedures and for comfort.
Dr. Renee Higgerson, who previously served as Emilio’s attending physician, has
certified Emilio’s condition as irreversible. Dr. Jeffrey Kane, Emilio’s neurologist,
has stated that the neurological prognosis is for continued brain atrophy.
Medical Update Since Last Ethics Committee Meeting on 2/19/07:
Dr. Alexandra Wilson, the patient’s current attending physician, states that Emilio
is unable to move his arms and legs and only has abnormal posturing movements
with stimulation. He rarely opens his eyes, does not gag, cannot cough and cannot
breathe without use of the ventilator; his pupils are not normally responsive to light.
In addition, he can not empty his bladder and has to have a catheter. He does
appear to experience pain, as he grimaces in response to deep stimulation, and is
now receiving pain medications. He also bites his tongue, which causes bleeding,
making it necessary to place a device in his mouth to prevent further injury to his
tongue. In addition, he has experienced repeated full and partial collapses of his
lungs, and his physicians and the treatment team are having great difficulty keeping
his lungs inflated, even with the assistance of the mechanical ventilator. Finally, he
is now having seizures, some of which produce visible physical symptoms, and scans
(MRIs) of his head show progressive loss of brain tissue.
Dr. Brendle Glomb, pediatric pulmonologist, then discussed Emilio’s pulmonary
status, which as noted above has continued to deteriorate. He explained the current
functioning and support provided by the ventilator, and then described why Emilio
would no longer benefit from a tracheostomy. He also noted that the repeated
collapse and reinflation of Emilio’s lungs is damaging to the lungs, and increases the
risk that they will tear or even burst during attempts at re-inflation.
Dr. Jeffrey Kane, pediatric neurologist, then discussed Emilio’s current neurological
status, which has continued to deteriorate since the last consultation. Overall
Emilio shows no purposeful response or movement, which is evidence that the
deeper functioning of the brain is absent. In addition, Emilio’s EEG suggests that
Emilio is experiencing many more seizures than those at the bedside can see.
Based on his review of Emilio’s most recent EEG, Dr. Kane believes Emilio’s brain
may be experiencing seizures between 1/3 and ½ of the time. Dr. Kane believes that
the seizure activity will continue to increase, and that continued seizures will
accelerate the death of Emilio’s remaining brain tissue. In response to a question,
Dr. Kane noted that the current brain damage is not reversible, even if the seizure
activity for some reason should slow or stop. Instead, he believes that Emilio will
continue to experience the relentless and progressive loss of his brain tissue and
brain function, and that no therapy or other intervention has been identified which
could stop or reverse this process.
Dr. David Anglin, a pediatric intensivist involved in Emilio’s care, then discussed
Emilio’s care-setting. He noted that during the Ethics Consultation on February
19, 2007, there was some hope that Emilio might be able to be transferred to a
lower-acuity care setting or discharged home, and particularly if he were to undergo
a tracheostomy and receive a feeding tube. However, given Emilio’s continued
deterioration, he is too ill to survive anywhere but an intensive care setting, and he
certainly is not a candidate to be discharged to home.
Finally, it was noted that the physicians and other members of the treatment team
have contacted multiple children’s hospitals in Texas, and none of the facilities
contacted have agreed to accept him as they believe they have nothing more to offer
him and that any treatable conditions affecting Emilio have been eliminated.
Ethics Question:
The Pediatric Ethics committee was consulted for a second time to assist with the
question of whether it is medically and ethically appropriate to continue Emilio’s
current aggressive plan of care, including without limitation the use of the
ventilator.
Issues that were identified and considered:

The treatment team is in agreement that this patient has a terminal and
irreversible condition which will result in his death.
 There is significant concern that this patient is suffering from pain related to
his clinical condition.
 Dr. Wilson, Emilio’s current attending physician, other physicians and other
members of the patient care team believe Emilio is suffering and that the
burdens associated with his current plan of care far outweigh any benefits that
Emilio may be receiving.
 The medical treatment team believes that the patient is not a candidate for a
tracheostomy and a gastrostomy tube.
 Many acute and long-term care facilities have been contacted, but none has
agreed to accept transfer of Emilio.
 No additional therapeutic options have been identified or are available at any
facility that was contacted.
 The patient’s brain deterioration continues to be irreversible, and in the view of
his treating neurologist is likely to accelerate, given the level of seizure activity
Emilio is experiencing.
 The mother of the patient continues to request that the patient be maintained
medically with ventilator support.
Conclusion and Recommendations:
The Ethics Committee considered all the information provided and in the context of
the ethical principles and Texas law reached the following conclusion:


The current aggressive treatment plan for Emilio amounts to a nearly constant
assault on Emilio’s fundamental human dignity, and with little, if any,
corresponding benefit to Emilio. Thus the burdens associated with such care
clearly outweigh its benefits.
As a consequence, the Ethics Committee believes it is medically inappropriate to
continue aggressive care measures, including but not limited to the use of the
ventilator.
The Ethics Committee further recommends that




The treatment plan for the patient be modified to allow only comfort measures
(such as hydration, pain control and other interventions designed to decrease the
patient’s suffering ).
New complications that develop should not be treated, except with additional
palliative measures, as appropriate.
The patient’s code status be changed to a DNR.
Appropriate spiritual and pastoral care resources should be provided to
Emilio’s mother and family members.
In summary, the consulted members of the Ethics Committee concur with the
recommendation by the Attending Physician and patient care team to withdraw
aggressive care measures, including use of the ventilator, and to allow palliative care
only. The Attending Physician, with the help of the Children’s Hospital of Austin,
will continue to assist the patient’s family in trying to find a physician and facility
willing to provide the requested treatment. The family may wish to contact
providers of their choice to get help in arranging a transfer.
The patient will continue to be given life-sustaining treatment until he can be
transferred to a willing provider for up to ten days from the time a copy of this
letter is provided to the patient’s mother.
If a provider cannot be found who is willing to give the requested treatment within
the ten-day period, then all aggressive care measures (including, without limitation,
the use of the ventilator) may be withdrawn and the patient’s treatment plan may be
modified to allow for only comfort care measures, unless a court of law has granted
an extension of the time in the manner and for the reasons outlined under
applicable law.
The Ethics Committee is available to consult again in the future if the patient’s
clinical condition changes or if other ethical issues arise.
Respectfully submitted,
Nancy Sheppard
Co-Chair,
Pediatric Ethics Committee