Circumventing patients’ rights and hastening death

Commentary by Amber Dolle

It's often hard to watch the daily news as story after story of children abused and neglected flashes across the screen. Even more disheartening is to learn that many such cases of child endangerment take place at the hands of the parents. It is unfathomable to think of a parent ever hurting a child, but it happens every single day all across this country.

Though many pathetic parents often prove otherwise, a parent is supposed to be the child's number one advocate. It is encouraging to see news stories that reflect this fact. Such is the case with little Emilio Gonzales of Austin, Texas. As this precious 17-month-old toddler lies in a hospital bed, presumably ailing from Leigh's disease, his mother, Catarina Gonzales, is fighting with all her power to keep him alive. Sadly, Catarina's foes are the very people who should be fighting just as hard to save her son's life ? the doctors and hospital officials at Children's Hospital in Austin.

Thanks to Texas' draconian futile care law, the decision as to how long Emilio should continue to receive life-sustaining treatment now lies in the hands of hospital officials. Forget parental rights. According to the state law (signed into place in 1999 by Gov. George W. Bush), hospitals have the right to end life-sustaining treatment in so-called medically futile cases after a 10-day notice to the family.

While the officials at Children's Hospital in Austin believe they know when little Emilio should die, his mother and family are quick to disagree. Catarina Gonzales does not deny that her son is chronically ill, but she is not ready to give up. She wants to fight for her son's life ? just as any good mother would ? and she deserves that right.

The facts in this case just don't add up. Emilio is a sick child with a loving family that wants to keep him alive with the hopes that he will improve. Unlike the tragic case of Terri Schindler Schiavo whose estranged husband Michael successfully fought to have his wife killed by legal dehydration and starvation, there is no dispute among family members and there seems to be no immediate financial burden. The family has health coverage through Medicaid and the hospital argues that money is not part of the decision to remove Emilio's tubes. So, why then should Emilio die now? Why not allow more time for the family to fight for this boy's life?

The hospital officials and medical caregivers contend that the treatments Emilio has been receiving for the past four months should cease because he is suffering. Sure, we don't know the true intentions of every single hospital official, but this argument seems quite transparent. According to Julie Grimstad, a patient advocate, writer on end-of-life issues and director of Life is Worth Living, Inc., this "doing what is best for the patient" argument provided by hospital officials is often just camouflage.

"I believe medical futility policies are designed for one reason; cost-containment," said Mrs. Grimstad. "It is cruel to refuse available and potentially effective treatment to a patient who wants it. If a person wants to fight for every last moment of life, this is his or her right. There is absolutely no concern for the rights of patients in 'futile care' policies."

The Gonzales family is fighting back and has sought legal intervention to keep the hospital from hastening Emilio's death. A week ago, the situation seemed hopeless as the order was given to remove the toddler's breathing machine and feeding tubes by this past Tuesday, April 10. However, the Gonzales' efforts saw short-lived success when a Travis County probate judge granted a temporary restraining order on Tuesday morning mandating that the treatments continue until April 19. Now with another deadline looming, the Gonzales family must continue to forge ahead in the fight for Emilio's life.

As tragic as this case is, unfortunately, it is not a rarity. More and more states are enacting so-called futile care laws and more and more innocent people are dying, likely before their time. What is so troubling about these broad policies is that they do not pertain solely to extraordinary means used to keep a patient alive, such as ventilators. Rather, if hospital "experts" (doctors, ethics commissions and the like) so decide, they can remove a feeding tube used on patients who can't feed themselves. These are not extraordinary means to keep someone alive. These mechanisms simply provide a disabled person with the same necessities that you and I require to stay alive.

With such ambiguous futile care policies in place, a patient's very livelihood lies at the mercy of a so-called expert who might deem the patient's quality of life simply not worth fighting for. In essence, this tragedy brings us back to the continued attacks being waged on innocent human lives that are not respected, not loved and, ultimately, not wanted. As the Gonzales family continues to fight and pray for the life of little Emilio, we should all take notice. Today the threat of death falls upon children with a chronic illness, precious babies in the womb who weren't planned for, and elderly grandmas who are just a little too inconvenient for their families. Where will that threat fall tomorrow? Where will the line be drawn? At this rate, soon no one will be safe from the shadow of legalized killing.

Release issued: 12 Apr 07