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Battle Continues for Patients Like Terri

ve8QAd   |   April 01, 2007

Subsequent to my sister Terri Schiavo’s death, my family made the decision to continue to advocate for persons in situations similar to Terri. Sadly, we have found that two years after Terri’s death, we are still battling the same lies and confusions while fighting for the lives of others.

The mission of Terri’s Foundation, therefore, is to develop a national network of resources and support for the medically dependent, persons with disabilities and the incapacitated who are in, or might face, life-threatening situations.

One of the primary goals of the Foundation is to establish a support network of attorneys and physicians at the state or regional level who could provide help to those faced with circumstances my family experienced, where a family member or loved one might be in harm’s way. What happened to Terri continues each and every day in hospitals, nursing homes and hospices around our country.

Terri’s Foundation is continually dealing with cases in which families are desperately seeking help in dealing with medical professionals and facilities that are refusing to provide life-sustaining treatment for their loved ones. For example, we were involved in the case of a 63-year-old Vietnamese woman whose life was about to be taken by decree of an “ethics committee” at a leading hospital in Austin, Texas.

The woman had been receiving dialysis since 2003 and was admitted to the hospital after falling ill in early 2006. She was not brain-dead, nor in a coma and was being fed through a tube. According to her family, she was responsive and they wanted to continue medical treatment. But the hospital – using so-called “care rationing” -decided that her’s was a “futile case” and that she should die. The hospital was trying to impose this decision on the family when their attorney contacted Terri’s Foundation. We responded by not only working to find another hospital in the state of Texas to accept the woman as a transfer, but we conducted a campaign to try to bring her story to the public. The ensuing negative outcry and dedication of the family’s attorney caused the hospital to continue treating the woman. The family has since been able to care for her at home.

Sadly, this type of scenario is not rare and is becoming quite common in hospitals across America today.

Even more frustrating is that we are also fighting against a media that has, in large part, prejudged these types of cases. They don’t want to report the facts of the situation, having decided in advance that people like Terri should not be allowed to live. As a result, they dehumanize them and sell to an indifferent public that a “quality-of-life” standard should be established to measure the value of a person. The media did this very same thing in Terri’s case and, sadly, the general public is buying into it.

To this day I read that Terri was either “brain-dead,” “unresponsive” or in a “persistent vegetative state” (PVS). Just recently, for example, there was an article by Steven Pinker, “The Mystery of Consciousness,” which appeared in an issue of TIME magazine. Pinker stated that my sister was unresponsive. I wrote to him explaining that his assertion was patently false and gave him the facts to prove he was wrong. He never responded.

Several months prior, national columnist, Ellen Goodman, wrote an editorial for the Boston Globe, “Playing Vegetative Mind Games,” in which she tried to use Terri’s dehydration death to justify her own agenda. Goodman was disturbed by the latest scientific evidence that people diagnosed as being in a PVS are actually quite aware of their surroundings.

For someone like Goodman, who supported the starvation and dehydration of my sister, this raised some concerns. But rather than admit that she was wrong, Goodman shifted to another level of bigotry, surmising that someone like Terri was suffering “a fate worse than death.” So the real question is not, “Is this a human being?” but, in Goodman’s own words, “Would you want to live like this?”

I also responded to Goodman’s misinformation that Terri did not fit the diagnosis of someone in PVS. I pointed out that a recent study in the British Medical Journal concluded that there is a more than 43% rate of misdiagnosis in regard to alleged PVS cases. And just as with Steven Pinker, she never responded.

There are more than 40 affidavits from doctors, and videos of my sister, available to the public, which confirms that Terri was, in fact, responsive and trying to communicate as best she could. Additionally, the media refused to report that many of these doctors believed Terri could have been helped – significantly – if provided the rehabilitation that was denied her for over 12 years. It leads me to believe the mainstream media has completely abandoned any type of objective and ethical reporting regarding this issue. It becomes clear their only objective is to continue to try and persuade the public that the needless and horrific death of my sister was justified. They routinely continue to do this by inaccurately labeling Terri in these erroneous conditions and ignoring significant facts of her case.

Despite these reports and offensive, dehumanizing labels, my family has always held that our only intention was to care for and love my sister just as she was. This level of care and compassion should be the same for any person, whether they are disabled, elderly or incapacitated.

In the 2 years since my sister’s court-ordered death by dehydration and starvation, my family has worked very hard to bring attention to the growing threat of euthanasia in our country. Our hope is that, through Terri’s Foundation, our family will someday be able to stop the growing attitude that some lives are not worth living and our society will learn to treat those most vulnerable with the compassion and love we are called as humans to provide. They deserve nothing less.

You can contact the Terri Schiavo Life & Hope Network at PO Box 521, Narberth, PA 19072. Phone 1.855.300.HOPE (4673) or

[Editor’s note: contact information updated, including foundation name.]

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