| What
Terri's Taught Us
- Americans are starting to realize that unless they protect themselves,
Terri Schiavo's nightmare could one day be their own.
(Note: There is much very important information contained herein that can save our lives. Please, read and share!)
January 2004 By Carla Dial Citizen
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To submit a Letter to the Editor: citizeneditor@family.org It was hard to miss the national media frenzy when Terri Schiavo the brain-injured woman whose husband and parents have been locked in a bitter, decade-long legal battle over her life was disconnected from a feeding tube for six days last fall. Her case has sparked a national dialogue on the need to clearly define one's wishes for end-of-life care and the kinds of injustices that can be committed upon the disabled, sick and elderly where no such definition exists. Schiavo isn't the first nonterminal, brain-injured person to rely on a feeding tube and she's not the first whose family members have disputed whether she would rather starve to death than live with a disability. But never before has a case reached such a fever pitch. Terri's rescuers her parents, Bob and Mary Schindler, as well as pro-life and disability-rights groups tried first to go through the courts. When those arguments failed, citizens from all over the country jumped in: Florida legislators and Gov. Jeb Bush were swamped with hundreds of thousands of e-mails urging them to take action. Those pleas succeeded, at least for the time being, in saving Terri's life. But what about the rest of us? What can we do to ensure that our health care wishes are followed, even if we can no longer speak? What we've done is privatize killing," warned Nancy Valko, president of Missouri Nurses for Life. "People need to understand that once you privatize it, all bets are off. Everyone is a potential victim, and we need to demand the very highest standards for the medical and legal systems because they can kill you." Clear and Convincing Evidence One of the most astonishing revelations to come out of the Schiavo case is how low those standards actually are.
"The court concluded there was clear and convincing evidence that [death instead of living with a disability] was [Terri's] intent," George Felos, Michael Schiavo's attorney and a well-known euthanasia advocate, told Citizen during an interview last summer. But what exactly was that evidence? After Terri's initial collapse from unknown causes in 1990, Michael Schiavo sued his wife's doctors for malpractice when it became clear she'd suffered brain damage. He told the court, in moving testimony, about his plans to rehabilitate his wife and as a result, was awarded a $1 million judgment as well as court fees. Seventy percent of that money was put into a medical trust to pay for Terri's care. Clearly, [the money] would not have been awarded if she didn't want treatment and they were going to discontinue it, John Kilner, president of the Center for Bioethics and Human Dignity, told Citizen. But eight years later, as Schiavo was trying to end his wife's life over her parents objections, he said he recalled that, after watching a movie about Karen Ann Quinlan whose parents had to fight the state of New Jersey for the right to take her off a ventilator after she fell into a drug-induced coma Terri said she'd never want to be hooked up to a "machine" or become a burden " There was no written record of the conversation, so he produced two witnesses: his brother, and his brother's wife. Yet the Schindler family and one of Terri's closest friends argued that she never would have said something like that and, in fact, vividly recalled for the court conversations in which she'd said just the opposite. While trying to sue his wife's doctors, Schiavo never indicated that she would want anything but rehabilitation but after receiving the judgment, he put her in a nursing home where she received only minimal care. He used the money that was supposed to be spent on her therapy to pay the lawyers he'd hired to help him end her life. And he went on to father two children with the woman he's lived with the last seven years. Given those well-documented conflicts of interest, the evidence he presented to the court was anything but clear and convincing, said Max Lapertosa, an attorney who's argued several cases for the disability-rights group Not Dead Yet. "If the husband is wrong, and he gets his way," he told Citizen, "that's an error that can never be reversed. This only differs in scope from the Nazi attitude toward disability. The common attitude in the 1930s was that the disabled should be eliminated from society, whether you had to sterilize them, lock them up or kill them" It was just a matter of time until a case like Schiavo's came up, explained Valko, who's been concerned for decades about loopholes in guardian statutes that make abuses possible. "If your grandmother dies, you can't just walk into court and say, "Grandma told me she wanted me to have her house," " she said. "But apparently, someone can do that with your life. "It's a shame we have more protection for our property than our lives." But efforts are under way to change that. The National Right to Life Committee has drafted model legislation that could be adapted to fit each state, presuming that an incapacitated person without documented wishes would want nutrition and hydration to stay alive and allowing civil suits to be filed against people who violate that presumed desire. But since it could take time for all 50 states to adopt such laws and since some may not do it at all the best protection you can have is what you create for yourself. "This case should be a wake-up call for adults of all ages to make sure they have an advance directive," Kilner said. "Not only because of what this means for you, but also what it means for your loved ones." In Your Own Words Everyone over the age of 18 should have some form of end-of-life-care instructions, advised Rita Marker, head of the Ohio-based International Task Force on Euthanasia and Assisted Suicide. People have several options but some choices have inherent weaknesses, and many laypeople find the legal terminology confusing. At the very least, everyone should discuss with their loved ones whether they want to have things like do-not-resuscitate orders put in their medical files, and the circumstances under which they might want them carried out. And it's just as important to say which kinds of care you do want for instance, food and water, or antibiotics for infections as it is to say what you don't, like a ventilator or experimental surgery. But Marker urged caution. "Many of the likes and dislikes you discuss with your family don't need to be in a legal document, and it's often better not to have them in there, in case you change your mind," she said. Those should be ongoing discussions. The best thing to do is tell them and have them write it down, because if it's in your handwriting, it could be considered a legal document." By contrast, advance directives are legal documents that come in two basic forms: living wills and durable powers of attorney for health care decisions. Living wills, sometimes called directives" or "declarations," are the oldest kind and also the form pushed most often by the right-to-die movement, because they tend to be poorly written, and thus easier to construe as death sentences. In fact, they were invented in 1967 by the Euthanasia Society of America, which now calls itself Choice in Dying. The Patient Self-Determination Act of 1990 requires all federally funded hospitals to find out if patients have advance directives when they're admitted and if they don't, to ask them to sign one. But living wills give physicians a lot of discretion, allowing them to define as extraordinary the care you might consider basic. "[Living wills] are basically contracts, but no one is explaining them to the patients," Valko told Citizen. "They don't tell you what 'terminal' means which basically means anything a judge wants it to mean. They're calling Alzheimer's a terminal disease. All the definitions have changed. But people are blithely signing these things. If you do and it goes to court, it will stand and it won't matter then what you thought you were signing." "Living wills end up being blank checks to unknown physicians," Marker agreed, "with your life instead of your money at stake." To get around that, "some people say they'll give [decision-making power] to their attending or family physician but nobody knows who their attending physician will be at any given point in time," Marker added. "In a big-city hospital, you could have four in one day. And not many people have the luxury of a family physician anymore." The solution to that problem is the durable power of attorney for health care decisions, which allows patients to appoint someone familiar with their personal beliefs as a stand-in decision maker if they're incapacitated. The appointee gathers all the information they can about the patient's condition and options, and then makes medical decisions based on his previous discussions with the patient. A common mistake people make is combining elements of durable power of attorney for health care decisions with elements of the living will appointing an agent and saying he and the doctor should know the patient's wishes. That's problematic, Marker explained, particularly if the agent and doctor interpret things differently. The solution is to make sure your personal agent always has authority over the physician. Most important, Kilner said, is that patients select the right person to make decisions on their behalf. Many times it's a spouse or family member, but not always. If the wrong people hold the patient's life in their hands, the results could be disastrous something Bob Schindler knows all too well. As Citizen went to press, he was in court, fighting for the right to have Terri's sister or brother named as her independent guardian anyone but the husband who remains intent on starving her to death. "It's mind-boggling," Schindler told Citizen. Just the way she's been ignored all these years, that they haven't removed him as her guardian."
This article appeared in the January 2004 issue of Citizen Magazine. Copyright 2004 Focus on the Family |