Sunday, April 29, 2007

Bishop weighs in on debate over care of dying Texas boy]
AUSTIN, Texas (CNS) -- Citing difficult decisions in his own familyand the example of Pope John Paul II, Bishop Gregory M. Aymond ofAustin said Catholic teaching would permit the withdrawal ofextraordinary medical treatment for Emilio Gonzales, a dying17-month-old boy at Children's Hospital of Austin. Catarina Gonzales,the boy's mother, has been fighting for continued medical treatment ofher son at the hospital, which is part of the Seton Family ofHospitals, a 31-facility Catholic health system in central Texas. Theboy's physicians and other hospital officials have recommended thatthe child be removed from a respirator and given only "comfort care."Emilio, who has been blind and deaf since birth and was admitted tothe hospital Dec. 27 with a collapsed lung, has been diagnosed withLeigh's disease, a rare disorder that is causing his central nervoussystem to break down. The disease is considered incurable. "I cannotimagine the pain that Catarina experiences as she faces these terriblequestions that no mother wants to face," Bishop Aymond said in anApril 15 statement.http://www.catholicnews.com/data/briefs/cns/20070417.htm
Today's Zaman Istanbul, April 28, 2007
Family's appeal to stunt son's growth rejected

A board of doctors on the Health Ministry's ethics committee has rejected anappeal from a family with a son suffering from cerebral palsy to implement atreatment that would stunt their son's growth.

Dr. ├ľner Odabas, who heads the ministry's treatment services department,announced late on Friday that the Evren family's plea to allow a doctor toapply a growth-stunting procedure to their disabled son had been rejected bythe department's ethics committee, which is made up of a child neurologist, aradiologist, a deontologist, public health officials, a child psychiatrist, achild endocrinologist, a surgeon, and representatives of the TurkishPharmacists' Union and the Turkish Doctors' Union. "There has been nodocumentation of the positive consequences of this method in the literature todate," said Odabas.

The Evren family had applied to the Ankara University department of medicinelate March, where they were told they would have to wait for a decision fromthe Health Ministry's ethics committee before implementing the procedure tostunt their child's growth, also referred to as "Ashley's treatment." Thefamily had said they feared that if their disabled son Umut Mert got tallerand heavier, they would be unable to hold or carry him. Umut Mert cannot eat,speak or walk by himself.

Explaining the ethics committee decision, Odabas said Ashley's treatment wascurrently applied only in the US, stating that the number of cases where thegrowth-stunting procedure had been used was still too small to draw aconclusion and that thus the main reason the committee dismissed the optionwas that it was not ethical.

The family had been informed of the decision on their application, Odabassaid. The family's plea had sparked controversy, drawing both support andcriticism from various circles.Ashley's treatment is named after a severely disabled 9-year-old Seattle girlwhose parents opted to stunt her growth and prevent her sexual maturity inorder to allow them to continue to maintain a high standard of care for her.
28.04.2007 Today's Zaman Istanbul

Thursday, April 26, 2007

Update, and Thoughts on Disability Rights

For those who have been following the AMA campaign, here's the latest: no response from the AMA. We have sent letters and even done a walk-in to follow up, all in a very nice fashion, but no response. Therefore, be on the lookout over the next few weeks for further FRIDA action.

For those who have been following the Emilio Gonzalez case: he has a court hearing on May 9 on whether to extend the Temporary Restraining Order (TRO) against the hospital pulling his ventilator. Until then, advocates across the country are working with folks in Texas to secure Emilio's rights.

Both the cases of Ashley X and Emilio Gonzales have elicited strong emotional responses and divided points of view. In Ashley's case, FRIDA took the stance that altering her body according to the parents' wishes and the hospital's approval was against her human rights. In Emilio's case, FRIDA's position is also against the hospital, but happens to come down on the mother's side. What's the difference? Is there any kind of similarity? WTF, FRIDA?

Speaking as an individual here, in trying to explain how I see FRIDA's work, I feel that FRIDA is basically coming from a disability rights perspective and the universal need to recognize those rights. In both Ashley's and Emilio's cases, we are looking at children who are unable to speak for themselves. As children with disabilities, they have the right to bodily integrity, in line with the UN Convention on the Rights of Persons with Disabilities (which the US has yet to approve). As people who cannot actually communicate for themselves, they fall into a very gray area of human rights. Their parents speak for them, and medical ethics committees and doctors presume to decide whether what the parents want is okay.

In addition, the feminist concern in both these cases is strong. In Ashley's case, we were concerned that it was considered all right to tamper with a little girl without her consent. In addition, we were concerned that no one was really looking at the fact that three of her four family caretakers are female. Most caregivers ARE female and caregiving is a profoundly feminist issue. In Emilio's case, he is the child of a young single mom. What is the nature of motherhood? How is it complicated by disability and how society interacts with disability? Is there a line between motherhood and caregiving? Is that line blurred, willingly accepted, or rejected? Who tries to moderate that line...for example, medical-industrial entities? These are just questions for you, the reader's, consideration.

But for me, bottom line: Ashley's and Emilio's cases are disability ethics cases. Not right-to-life or -death issues, not pity cases....purely cases where some people have an issue with the fact that a kid has a disability and there's no social structure to support them. That is what we need to work to change.

FRIDA, in my view, is most essentially about the right of females with disabilities to maintain control and choice over their bodies and their lives. (Really, the right of all people with disabilities, regardless of gender.) FRIDA is also about highlighting issues where feminism and disability come into play. Sometimes, FRIDA's position is not too popular. However, the reality is that life is diverse and what is most important is to listen to the voices of women who are living the life...as people with disabilities, as moms, as family members, as concerned citizens. I truly respect my fellow members of FRIDA as strong women who KNOW when someone has a problem with the fact that they or those they love have a disability.

Amber Smock
FRIDA

Tuesday, April 10, 2007

Judge Grants Request To Keep Infant On Life-Support

April 10, 2007
A judge in Austin Tuesday granted a family's request to keep a critically ill 17-month-old boy alive -- at least until later this month.
The judge ruled the infant should not be removed from life-support -- as scheduled this week by Children's Hospital of Austin.
The judge granted a temporary restraining order sought by the family of Emilio Gonzales. A hearing is April 19.
Catarina Gonzales says she believes they'll find another hospital for her son.
Children's Hospital of Austin, which has said the case is medically futile, has contacted more than 30 hospitals trying to place him.
Emilio is believed to have Leigh's disease. Doctors say his higher order brain functions are destroyed and he's non-responsive.
Children's Hospital has invoked a state law that allows hospitals to end such life-sustaining treatment -- with 10 days notice to the family.
The Legislature is considering changing the law.
Copyright 2007 by The Associated Press. All Rights Reserved.

Monday, April 09, 2007

AUSTIN - Lawyers for a terminally ill toddler on life support will again ask a court this week to keep alive the 17-month-old who cannot find another hospital to take him.
The family of Emilio Gonzales has until Tuesday to transfer the boy, who faced a similar deadline last month before his hospital provided more time to locate a new facility.
But no takers have emerged since Children's Hospital in Austin granted a two-week extension March 20. The hospital plans to remove the respirator Wednesday, and doctors expect Emilio to die within minutes or hours.
A lawyer for the family said she will ask a Travis County probate judge Tuesday for a temporary restraining order forcing the hospital to treat Emilio while the search continues.
"We're hopeful that we will receive more time to find a transfer for Emilio, because we have not exhausted all possibilities and leads," attorney Jerri Ward said.
Emilio has Leigh's disease, a degenerative neurological disorder causing his brain tissue to die. He has been at the hospital since December, and doctors fear the life support machines are hurting him.
Among his supporters are state lawmakers backing a bill that would prohibit hospitals from stopping life-sustaining treatment while a family pursues a transfer or other care.
Under the current law, doctors are obligated to give only 10 days notice before withdrawing treatment when further care is deemed medically futile, even over the wishes of the patient and family.
The temporary restraining order request would not be the first filed by Emilio's lawyers. Children's Hospital granted the recent two-week extension hours after Ward filed a similar motion four days before doctors first scheduled removal of the respirator.
But Michael Reiger, general counsel for the Seton Family of Hospitals, said there are no medical options left for the boy. He said Emilio has been turned down by 30 other hospitals, including ones that specialize in treating patients like him.
Reiger said Wednesday's removal would come at a convenient time for the family when support services are on hand.
"We would want it to be peaceful and dignified and as respectful as it could be," he said.
Emilio's mother, Catarina Gonzales, said her son reacts to speech and is not brain dead. Doctors say he has no purposeful movement and tests show that his brain is withering.
Last week, lawyers for the Gonzales family failed to persuade U.S. District Judge Sam Sparks to intervene in the case.
Texas is one of the few states with a timetable for cutting off a patient's life-sustaining treatment, according to studies cited by activist groups.
Under the current law, a doctor's decision to refuse a family's wishes to continue life-sustaining treatment is subject to review by a hospital ethics or medical committee. The patient and family get 48 hours' notice of that meeting.