How not to die
A private tragedy has become a national disgrace
This is not a case that this site wants to write about. Of course we are referring to Theresa Schiavo, who is at the center of a tragically protracted right-to-refuse legal dispute in Florida. We do not relish the made-for-cable-TV spectacles of personal or small-town tragedies -- we cover national politics, and there is no shortage of topics involving people who have put themselves in the public eye. But the United States Congress, led by Tom DeLay and Bill Frist, has decided that this is to be the focus of our government this week -- not the ongoing war, not the growing deficit, not even Social Security, and certainly not DeLay's ethics troubles, but a single family dispute in Florida.
Each year, thousands of families deal with a particularly tragic kind of death -- when dying is inevitable and there is no hope for recovery. Whether it is a cancer patient who refuses a painful and practically futile second round of chemotherapy in order to concentrate on living the rest of his life in comfort, or whether it is a wife whose husband will never be conscious again, and who knows he would not have wanted a ventilator to keep him in that limbo, or whether it is a mother whose child was born with a fatal, painful, and incurable defect, and who cannot find a hospital willing to sustain short life -- such intensely private matters generally remain private, out of respect and because our society is ill-equipped to comprehend the ethics and emotions around these tragic circumstances.
How did one such private case lead to an unusually specific bill, applying only to one woman, passed by a congress that would otherwise be out of session and signed by a president while he was otherwise on vacation? How did this personal tragedy become fodder for political grandstanding and the hamhanded obsession of broadcast media?
The medical case. Ms. Schiavo suffered a cardiac arrest in 1990, from which she lost consciousness. Over the years, her condition worsened, to the degree that her cerebral cortex -- containing her memories, feelings, and personality -- degraded and was replaced with spinal fluid. Her brain stem is intact, giving her reflexive response such a breathing and eye movement. Doctors who examined her concluded she was in a persistent vegetative state and her condition would never improve. Since she cannot swallow, she is sustained by a surgical feeding tube.
The legal case. Ms. Schiavo's husband and parents pursued and won a malpractice suit against doctors who failed to diagnose bulemia, the purported cause of the cardiac arrest. After eight years of care, Michael Schiavo petitioned the court to determine whether Ms. Schiavo, were she conscious, would have wanted to refuse the medical treatment keeping her alive. The court, hearing testimony from several sources, determined on clear and convincing evidence her desire to refuse (her right under Florida law -- for more on the ethics of this, read this analysis). From 2000 to 2003, Ms. Schiavo's parents, the Schindlers, petitioned and appealed the decision a number of times, on the basis of claims of new evidence, claims of new treatment, claims of contrary diagnosis, and claims of Mr. Schiavo's incompetance to be guardian. All courts heard their claims and denied their appeals. Legally, Ms. Schiavo was still found to be in a persistent vegetative state with no hope for improvement, and her wishes were still found to be to refuse treatment.
As of October 15, 2003, when the courts ordered the feeding tubes removed from Ms. Schiavo (for the second time), this was a tragedy several times over -- first, that a woman suffered a cardiac arrest which caused her permanent loss of consciousness; second, that her family members, courts, and medical experts had to decide how to respect her wishes; and third, that her parents and her husband did not agree on the final decision.
But that wasn't the end.
On Saturday, October 11th, I received an impassioned phone call from Mary Parker Lewis, Alan Keyes’ Chief of Staff, and Phil Sheldon, partner and creative genius behind conservativepetitions.com. They told me plainly, "Terri Schiavo is going to die; we’ve got to do something. Randall, you’ve got to go to St. Petersburg and help the family."
We spoke to Pamela Hennessy, who has acted as family spokesperson, and within a few minutes she had us on the phone with Terri’s father, Bob Schindler Sr. I explained my background in activism and my work with the media and told him that we would serve his family in any way we could if the family wanted assistance. His plea was simple: "Please come. I am giving you carte blanche to do anything you can." I told him we would come, and we began to scramble. (Randall Terry)
Who is Randall Terry? From 1988, when he began his "Operation Rescue" protests at abortion clinics, until 1998, when he settled a racketeering lawsuit with NOW and agreed to pay for "damages caused in clinic attacks" (he soon declared bankruptcy), Terry represented the dark side of the pro-life movement.
One doctor, Dr. Susan Wicklund, was grabbed and slammed against a car as she tried to get through the blockade and into her office. Patients were tripped and pushed to the ground. One clinic administrator was grabbed by her hair and thrown to the ground by an Operation Rescue leader. Another was viciously choked by Operation Rescue protesters, leaving serious bruises on her neck. One patient, who was trying to enter the clinic -- not for an abortion but for post-operative care following cancer surgery -- was beaten with an Operation Rescue protester's sign. The protesters clawed at her and attacked her, causing her sutures to rupture, and she passed out. (Testimony of Fay Clayton before the House Judiciary Committee, 1998, via Mark Kleiman)
He is most notorious, however, for inflamed rhetoric advocating the death penalty for abortion doctors ("When I, or people like me, are running the country, you'd better flee, because we will find you, we will try you, and we will execute you. I mean every word of it"); one of his aides de camp, James Kopp, was convicted of murdering a Buffalo doctor in 1998. More recently, the religious-right World Magazine uncovered his cynical attempt to raise funds from pro-lifers to buy a half-million dollar house in Florida.
On October 15, 2003, Mr. Terry sent in the clowns.
At that point I asked Governor [Jeb] Bush: "Mr. Governor, if you could be shown that you have the constitutional authority to intervene, and that your intervention would not be a violation of the separation of powers, would you consider those options?" He immediately said yes and put me on the phone with one of his legal staff. He promised the family he would look at every legal option he had. (Randall Terry)
Thanks to the intervention of Jeb Bush and the Florida legislature, another year and a half of legal disputes ensued, all of which upheld the original findings -- that Ms. Schiavo has no hope of improving from her persistent vegetative state, that she would have wanted to refuse treatment, and that her husband is the rightful legal guardian.
Throughout these legal challenges, two strategies of the Schindlers emerged: one, use of anecdotal quack opinion based on four minutes of video distributed by the Schindlers, and two, an aggresive smear campaign against Mr. Schiavo, claiming that he is after the malpractice money, that he is an uncaring or abusive guardian and a "bigamist," and even that he caused Ms. Schiavo's condition by beating her. None of these claims have been found true or even convincing in court, but they remain the main themes of what has become an ugly political circus.
This past weekend, our United States Congress entered the ring in passing "Terri's Law," a bill which attempts to move the Schiavo case from Florida's courts, where it has been decided with finality, to the federal level. The bill takes extra care to apply only to this individual citizen -- "Nothing in this Act shall be construed to create substantive rights not otherwise secured ...Nothing is this Act shall constitute a precedent with respect to future legislation ... Nothing in this Act shall affect the rights of any person ...," etc.
It is a strange bill: not only does it fail to address the issues at stake for our society -- namely, how to resolve right-to-refuse disputes, if not through the existing process -- but it also appears to run contrary to one of the major principles of modern Republicanism, the notion of "federalism" and limiting the jurisdiction of federal courts. It is also unclear exactly how federal courts would differ with the last seven years of litigation. (Indeed, neither the district court nor the circuit court found any merit to this week's appeals.) What it does accomplish is allowing lawmakers to posture and grandstand on C-SPAN.
So we Americans have the pleasure of watching our elected representatives make these statements in the halls of Congress:
Mr. SENSENBRENNER: Terri Schiavo, a person whose humanity is as undeniable as her emotional responses to her family's tender care-giving, has committed no crime and has done nothing wrong. Yet the Florida courts have brought Terri and the Nation to an ugly crossroads by commanding medical professionals sworn to protect life to end Terri's life.... To starve someone to death or to have them die of dehydration slowly is one of the most cruel and inhumane ways to die.
Mr. SMITH of New Jersey: Mr. Speaker, we meet tonight under extraordinary circumstances, and I for one am very grateful to the Speaker and majority leader DELAY for bringing us back because a much-loved disabled woman in Florida has been ordered to die by starvation and dehydration. We meet tonight because Terri Schiavo's family, including her parents, Bob and Mary Schindler, refuse to allow their precious daughter, who is not in a coma nor is she terminally ill nor is she in a persistent vegetative state, to be killed by starving her to death....We meet here tonight because there are serious questions whether Terri Schiavo's estranged husband, Michael, who has abandoned Terri for another woman and has had two kids with the other woman, could be trusted as a legal guardian for a woman for whom he has sought death for many years.
Mr. GINGREY: Mr. Speaker, in response to the remarks a few minutes ago from the gentleman from Massachusetts, I want to say that I am not sure whether or not I am on C-SPAN, but I am absolutely sure that I am not playing doctor, for indeed I am one.... Although Congress cannot heal Terri, we do have the ability to save her from an inhumane death from forced starvation and dehydration. Mr. Speaker, since Terri Schiavo's brain injury 15 years ago, she has been profoundly disabled. She is not, however, in a coma. She responds to the people around her; she smiles and she can feel. Terri is very much alive… Terri responds to verbal, auditory, and visual stimuli, normally breathes on her own and can move her limbs on command… Florida law prohibits the starvation of dogs, yet will allow the starvation of Terri Schiavo. Florida law does not allow for physician assisted suicide or euthanasia, nor does my compassionate God fearing state of Georgia. Although I am not a neurologist by specialty, my basic courses in medical school taught me that dehydration is a horrific process. It is a process that only the cruelest tyrants in history have used to "cleanse" populations. The patient's skin cracks, their nose bleeds, they vomit as the stomach lining dries out, and they have pangs of hunger and thirst. Starvation is a very painful death to which no one should be deliberately exposed. The tragedy of this situation is that with proper treatment, now denied, Terri's condition can improve.
Mr. WELDON of Florida: I practiced medicine for 15 years, internal medicine, before I came to the House of Representatives. I took care of a lot of these kinds of cases. Number one, by my medical definition she was not in a vegetative state based on my review of the videos, my talking to the family, and my discussing the case with one of the neurologists who examined her.
Mr. SOUDER. Terri swallows, shows eye movement, and seems to respond. She is a living human being although with limited competency. Those who would let her die can overplay her handicaps, but they cannot change the fact that she is a living human being who is responsive. Also, her guardian is supposed to protect the person they are guarding, not take the money intended for life support, divert it and offer no rehabilitation efforts. Many others who can swallow their saliva and who can barely do anything beyond that have received help for years. She did not get it because most of it was spent on attorneys by her guardian who wanted to kill her. This is a moral outrage. Her true guardian is her parents at this point. Her husband is in a compromised position. With his fiancee and two children by that fiancee, it would be very inconvenient if she recovered. It is an outrage what is happening.... Let us not let Easter week 2005 become the week America let a helpless, mentally disabled woman starve to death while the whole Nation watched.
Do any of these men have any idea what they are talking about? The answer is no. And it is truly remarkable that among them are actual doctors, who, based on a heavily-edited videotape distributed by the Schindlers, are making medical diagnoses which contradict the years of diagnoses by Ms. Schiavo's doctors and doctors appointed by the court who have actually examined her in person. The majority leader of the Senate, Bill Frist, is also a doctor, and he joined the show:
Bill Frist (R-Tenn.), a renowned heart surgeon before becoming Senate majority leader, went to the floor late Thursday night for the second time in 12 hours to argue that Florida doctors had erred in saying Terri Schiavo is in a "persistent vegetative state." "I question it based on a review of the video footage which I spent an hour or so looking at last night in my office," he said in a lengthy speech in which he quoted medical texts and standards. "She certainly seems to respond to visual stimuli."
His comments raised eyebrows in medical and political circles alike. It is not every day that a high-profile physician relies on family videotapes to challenge the diagnosis of doctors who examined a severely brain-damaged patient in person. Democrats were quick to note that Frist was getting rave reviews from conservative activists who will play a major role in the 2008 presidential primaries he is weighing. ("Viewing videotape, Frist disputes Fla. doctors' diagnosis of Schiavo," Washington Post, 3/18/05)
It doesn't take a brain surgeon to diagnose the problem afflicting the Congress.
This is an important moral issue and the pro-life base will be excited that the Senate is debating this important issue. This is a great political issue, because Senator Nelson of Florida - has already refused to become a cosponsor and this is a tough issue for Democrats. [...] This legislation ensures that individuals like Teri Schiavo are guaranteed the same legal protections as convicted murderers like Ted Bundy. (GOP talking points, reported by the Washington Post and confirmed by Sen. Mel Martinez)
A personal tragedy has become a political game. Could we have expected a reasonable contribution from our elected officials in making guidelines to resolve this and the thousands of other cases similar to Ms. Schiavo's? Probably not. But we certainly expected more from Congress than the inflated, inaccurate, and often slanderous grandstanding that we have seen in this long week, a moment in our country so low that a woman in a persistent vegetative state has been subpoenaed to appear before Congress to answer questions about how to treat her with dignity.
Ms. Schiavo, unable to say anything for herself, has been propelled by her distraught family, well-meaning activists, unscrupulous operatives like Randall Terry, and prominent politicians, from Jeb Bush to George Bush, to the status of a symbol, but of what? A symbol of the "culture of life," whatever that means? Unfortunately, even that level of opportunism is not quite sufficient to explain this case. In their zeal both to prove their "values" credentials to the base and to capitalize on any and all political opportunities, Republican congressmen have made of her a symbol of the partisan hack.
On Friday, as the leaders of both chambers scrambled to try to stop the removal of Ms. Schiavo's feeding tube, Mr. DeLay, a Texas Republican, turned his attention to social conservatives gathered at a Washington hotel and described what he viewed as the intertwined struggle to save Ms. Schiavo, expand the conservative movement and defend himself against accusations of ethical lapses.
"One thing that God has brought to us is Terri Schiavo, to help elevate the visibility of what is going on in America," Mr. DeLay told a conference organized by the Family Research Council, a conservative Christian group. A recording of the event was provided by the advocacy organization Americans United for Separation of Church and State. "This is exactly the issue that is going on in America, of attacks against the conservative movement, against me and against many others," Mr. DeLay said.
Mr. DeLay complained that "the other side" had figured out how "to defeat the conservative movement," by waging personal attacks, linking with liberal organizations and persuading the national news media to report the story. He charged that "the whole syndicate" was "a huge nationwide concerted effort to destroy everything we believe in." ("How family's cause reached the halls of Congress," New York Times, 3/22/05)
We share with the well-meaning advocates on both the Schilders' and the Schiavos' side the desire to do the right thing to respect Ms. Schiavo's dignity, and the desire for resolution for her relatives and friends. But the political opportunism displayed by DeLay, Frist, and others in this case is a disgrace to the dignity of our country. The trial we are watching is not Schiavo's -- it is the circus of corrupt public officials making the case for the life of their party.
"God has brought [Schiavo] to us" to defend him from ethics charges, says Tom DeLay.
With that, the prosecution rests.
comments@polianna.com