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2005-03-22

The Case of Terri Schiavo: A Debate Between a Bioethicist and a Disability Rights Activist

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A Federal Judge has refused to order the reinsertion of Terri Schiavo’s feeding tube after an unprecedented action by Congress to allow her case be reviewed by federal courts. We host a debate between a bioethicist and a member of a disability rights group, Not Dead Yet. [includes rush transcript]

A Federal Judge has refused to order the reinsertion of Terri Schiavo’s feeding tube.

U.S. District Judge James Whittemore wrote that Schiavo’s "life and liberty interests" had been protected by Florida courts. He wrote that despite "these difficult and time strained circumstances," this court is "constrained to apply the law to the issues before it."

Terri Schiavo’s feeding tube was disconnected last Friday on orders from Florida circuit court Judge George Greer. The ruling was supported by Schiavo’s husband–but not her parents. It marked the third time the courts have ordered the removal of the tube in the last two years.

But late Sunday night Republican lawmakers approved legislation to allow a federal judge to consider reversing the decision of the state court. The bill won the backing of virtually all of the Republicans and almost half of the Democrats in the House.

In a rare Sunday session, members of Congress were called back from their Easter recess to tackle the case. President Bush also interrupted his vacation at his Crawford Texas ranch to sign the bill. Speaking in Tucson yesterday, Bush applauded the dramatic legislative maneuver by Congress to get the case before a federal court.

  • President Bush, speaking in Tucson, Arizona:
    "Democrats and Republicans in Congress came together last night to give Terri Schiavo’s parents another opportunity to save their daughter’s life. This is a complex case with serious issues, but in extraordinary circumstances like this, it is wise to always err on the side of life."

After the legislation was approved, Terri Schiavo’s husband–Michael–spoke out against the extraordinary session by Congress.

  • Michael Schiavo, husband of Terri Schiavo:
    "Right now I am very outraged. This is a sad day for Terri and this is a sad day for everybody in America because the government is going to trample on all of your personal and private matters. This is an outrage, they have no business in this matter. Terri made her wishes, it has been adjudicated in a state court over the last seven years. Eighteen judges have heard this. Appeals have been heard. The Supreme Court justices have heard this, and now the House of Representatives and the Senate are saying that they are wrong. They are thumbing their nose up at the constitution."

Following today’s decision by the federal judge to refuse to order the reinsertion of Terri Schioavo’s feeding tube, attorney’s for Schiavo’s parents said they will file an appeal at the 11th Circuit Court of Appeals in Atlanta, Georgia. This is Republican Congressmember Trent Franks of Arizona speaking on the House floor Sunday night.

  • Trent Franks (R-AZ)

We host a debate on the case of Terri Schiavo with a bioethicist and a member of a disability rights group, Not Dead Yet and we speak with Democratic Congressmember Barney Frank of Massachusetts

  • Stephen Drake, research analyst for Not Dead Yet, a disability rights group organizing opposition to assisted suicide and euthanasia.
  • Ken Goodman, Director of the Bio-Ethics program at University of Miami.

Transcript

This is a rush transcript. Copy may not be in its final form.

AMY GOODMAN: Speaking in Tucson Monday, Bush applauded the dramatic legislative maneuver by Congress to get the case before a federal court.

PRESIDENT GEORGE W. BUSH: Democrats and Republicans in Congress came together last night to give Terri Schiavo’s parents another opportunity to save their daughter’s life. This is a complex case with serious issues. But in extraordinary circumstances like this, it is wise to always err on the side of life.

AMY GOODMAN: Terri Schiavo’s husband, Michael, spoke out against the extraordinary session by Congress.

MICHAEL SCHIAVO: Right now I’m very outraged. It’s a sad day for Terri. And it’s a sad day for everybody in America, because the government is going to trample all of your personal and private matters. This is an outrage. They have no business in this matter. Terri made her wishes; it has been adjudicated in a state court over the last seven years. Nineteen judges have heard this. Appeals have been heard. The Supreme Court Justices have heard this. And now, now the House of Representatives and the Senate are saying that they’re wrong. They’re thumbing their nose up at the Constitution.

AMY GOODMAN: Following today’s decision by the federal judge to refuse to order the reinsertion of Terri Schiavo’s feeding tube, attorneys for Schiavo’s parents said they’ll file an appeal at the 11th Circuit Court of Appeals in Atlanta, Georgia. In a few minutes we will have a debate on the case of Terri Schiavo. But first, we wanted to take a look at the extraordinary measures taken by Congress. We turn now to an excerpt of the Sunday night session. We turn to Trent Franks, Arizona Republican.

REP. TRENT FRANKS: Mr. Speaker, perhaps it is important for those of us in this chamber to first remind ourselves again of why we are really all here. Thomas Jefferson said the care of human life and its happiness and not its destruction is the chief and only object of good government. Mr. Speaker, protecting the lives of our innocent citizens and their Constitutional rights is why we are all here. The phrase in the 14th Amendment capsulizes our entire Constitution. It says, "No state shall deprive any person of life, liberty or property without due process of law."

It is unconscionable that judges holding responsibility to protect Terri Schiavo’s Constitutional rights have chosen to abandon those responsibilities, so now that Congress has no honorable alternative but to respond as we are. Herbert Humphrey once said that a society is measured by how it treats those in the dawn of life, those in the shadows of life, and those in the twilight of life. It is true that Terri Schiavo lives among us in the shadows of life. But she is not brain-dead or comatose. She is awake and she is able to hear, she’s able to see, she is often alert. She can feel pain. She interacts with her environment. She laughs, she cries, she expresses joy when her parents visit her and sorrow when they leave.

And, Mr. Speaker, she reminds me so much of another woman, whose name I will not mention, who was in much the same circumstance as Terri. And a young nurse insisted every morning on singing to this patient. And, of course, her colleagues upbraided her and said, well, she can’t hear you; those are just reflex actions. But she continued day after day, year after year to sing to her every morning. And finally, she left the hospital, and yet, a few years later, the patient regained her state of mind, and came back as it were, to a healthy, clear mind. And all of the nurses gathered around her and met with her. And they said, do you remember? Do you remember when we took care of you? When we turned you to keep you from getting bedsores? When we washed you? When we tried to feed you? And she said, no, I don’t remember anything except someone singing.

Mr. Speaker, Terri Schiavo represents the mortality and helpless of us all as human beings. And whether we realize it or not, we’re at this moment lying down beside her, listening for that song of hope. And if we as a nation subject her to the torture and agony of starving and thirsting to death, while her brother, her mother and her father are forced to watch, we will scar our own souls. And we will be allowing those judges who have lost their way to drag us all one more ominous step into a darkness where the light of human compassion has gone out, and the predatory survival of the fittest prevails over humanity. If the song of hope is to be silenced, Mr. Speaker, let it not be tonight. Thank you.

AMY GOODMAN: Arizona Republican Trent Franks on the Schiavo case. As we turn now to a debate, we’re joined by two people. Ken Goodman joins us from Miami, Director of the Bio-Ethics Program at the University of Miami. We’re joined from Chicago by Stephen Drake, a research analyst for the disability rights organization, Not Dead Yet. Let’s begin with Ken Goodman. Your response to the latest ruling in Florida, federal judge has ruled that the tube will not be reinserted into Terri Schiavo.

KEN GOODMAN: What you notice is a consistent pattern of judges from local circuits to federal appeals, all coming up with exactly the same conclusion. You notice a series of neurologists, board-certified neurologists, all coming up with the same conclusion. You notice doctors, lawyers and people who teach ethics in our medical schools all coming up with the same conclusions. It has nothing to do with what you just heard from the representative. It has nothing to do with euthanasia, nothing to do with starvation. Nothing to do with dignity.

It has to do, precisely, with the flip side of dignity, namely the right to refuse medical treatment. Terri Schiavo is not being starved to death. And anybody who uses the language of starvation and suffering is doing so to deceive you. Talk about framing the debate. That’s exactly what’s happened here for partisan political purposes. She’s uncontroversially in a persistent vegetative state according to credible neurologists. That does not include any members of our Congress. And the fact of the matter is anybody who suggests otherwise is trying to advance an agenda that has nothing to do with poor Terri Schiavo.

AMY GOODMAN: Stephen Drake, your response?

STEPHEN DRAKE: Well, I wish I could say I was surprised. I think by this time, you know, the judiciary where, you know, whoever they are, you know, are kind of seeing this as, you know, especially the way it’s being framed as an assault on the courts, whether that’s true or not. And you know, one thing I would actually agree with is that this has been portrayed as a partisan issue. And of course, with the groups that I’m affiliated with, you know, we see it as a much more complicated than that. It’s really not surprising that we’d see this many judges, you know, siding in this way in a case like this. This is historically a pattern we’ve seen. I mean, it goes way back, if you look back in the mid-1980s, you know, two separate judges signed off on the starvation death of an infant with Down’s Syndrome. Something that is recognized now as something that’s unconscionable. But you know, back at that time, they had no problem doing it.

AMY GOODMAN: Stephen Drake and Ken Goodman, we have to break. When we come back, we also are going to go back and look at the story of Terri Schiavo, how she ended up in the condition she was and understand, what is the care she has gotten over this more than a decade.

[break]

AMY GOODMAN: I’m Amy Goodman, as we talk about the case of Terri Schiavo with Stephen Drake, research analyst for the disability rights organization, Not Dead Yet, and Ken Goodman, Director of the Bio-Ethics Program at the University of Miami, where Democracy Now! broadcasts each week on WVUM. Ken Goodman, you have been following this case from the beginning. If you can please just give us the background. It was very hard, even after watching Congress for three hours on Sunday night, to understand what happened to Terri Schiavo. Why did she end up in the condition she is in?

KEN GOODMAN: It’s significant that by watching Congress, you didn’t learn very much about the case. 15 years ago last month, actually, in February, she had a heart attack as a result of a potassium imbalance caused by an eating disorder. That’s pretty well established. She was, unfortunately, like many people, not able to be resuscitated in time, and as a result, suffered hypoxic or anoxic brain injury. Large portions of her cerebral cortex were damaged, severely damaged by that heart attack. In fact, she’s been described as being neurologically devastated. Since then she’s been taken to various forms of rehabilitation. They haven’t worked. She’s been in a number of different organizations. And in fact, when neurologists were able to examine her, made a diagnosis that she’s in what’s called a persistent vegetative state. What’s happened in the intervening 15 years is that brain tissue that died 15 years ago has now been replaced with spinal fluid. That is to say, her cerebral cortex is full of spinal fluid. Electro-encephalograms of her brain show that her cortical EEG is flat. She has what’s been called cortical death. All of the stuff that you’re hearing, all of the videos you’re watching, all of the testimonies that you’re getting wind of that suggest this poor woman is there thinking about lunch and she’s interacting, they’re all false. They’re wishful thinking, and they underscore the tragedy of this awful case. Poor Miss Schiavo cannot see, she cannot hear, she cannot feel, and she never will be able to again, according to credible neurologists. People who disagree with that are trying to advance an agenda by, well, by a number of other things, by allying themselves unhappily with the disability rights movement, a movement they didn’t care too much about before Terri Schiavo. Terri Schiavo is not disabled, by the way, according to any credible definition. And the use of disability language and the use of starvation language is purely intended to deceive people and move forward a narrow political agenda. This was settled area in law, medicine and ethics for a generation. Just because you have a device or a treatment, in this case a percutaneous endoscopic gastrostomy, doesn’t impose on you a moral duty to use it. Same with ventilators, same with dialysis, same with chemotherapy and everything. In this case, we have activist judges —

AMY GOODMAN: Ken Goodman, before we get into a debate on that, because I do want to bring Stephen Drake in when we deal with that, I still wanted to stay with the facts of the case, of what happened. A lot of aspersions cast on her husband, Michael Schiavo, that he might be doing this for some kind of monetary gain, that he has two children with another woman who he wants to marry, that he wants to get Terri out of his life. Can you describe what happened from the beginning? When did the parents of Terri Schiavo and Michael Schiavo split? Because at the beginning, they were together, caring for her.

KEN GOODMAN: They were indeed. And some of those details are unknown publicly. Originally there were disputes about everything from how to treat her, as I understand it, to how to spend the malpractice money. The money is all gone now. The money has overwhelmingly gone to legal fees and to pay for her care. The family dispute now is between a husband and his in-laws. And the allegations against Michael are quite interesting. I don’t know what to make of them, although I’m sure that even if they were true, they shouldn’t have any bearing on whether or not this poor woman should have a tube taken out of her stomach. The facts of the case are the neurologists agree about her diagnosis. There is no more money left in any estate. No one stands to gain any money now. The costs of her care are being paid for by the government and by the hospice she’s in, which is providing some pro bono care, as many hospices do. By the way, hospice [inaudible] to be devastated nationally by cases like this if they move forward. And you have an unhappy family situation that’s been litigated in the courts. And what’s not in dispute, among people who are credible, is she has the diagnosis she has. Whether the husband is a good guy or bad guy doesn’t seem to bear on the case at all, because ordinary people seem to be in complete concert with what he’s requesting. He says this is what she would not have wanted. Not surprising, most people if you ask them about whether they want to be in a persistent vegetative state would say they don’t want it, either. What’s striking is the facts of the case are uncontroversial until they need to be twisted to move forward a political agenda.

AMY GOODMAN: Stephen Drake of the disability rights group, Not Dead Yet. This whole issue of whether Terri Schiavo is in a persistent vegetative state, and the question of what people decide when they say, "If something happens to me." And talk about what they want done.

STEPHEN DRAKE: Yeah. I find it fascinating when people talk about how clear a so-called diagnosis, persistent vegetative state, is. Just about a month ago, The New York Times had an article on some recent research about looking at people with so-called minimally conscious state, looking at unsuspected neurological activity. And there, a fairly mainstream bio-ethicist, Joseph Fins was quoted as saying as an aside that with persistent vegetative state there’s a 30% misdiagnosis rate. Which means, you know, that —

KEN GOODMAN: It’s nice —

STEPHEN DRAKE: Anyway, that there’s this whole unrecognized field that, you know, after this short, intense period of looking at people, you know, for consciousness, people tend to stop looking. And in various studies over the past 15 years, they found groups of people, when people have gone to them, either technologically or through intensive evaluation, that a significant number of people who get labeled as permanent or persistent vegetative state, in fact, are not. But it takes a lot of work to detect that they’re not.

AMY GOODMAN: Ken Goodman, you’re shaking your head.

KEN GOODMAN: Terri Schiavo’s not in a minimally conscious state. People who — after 15 years, I think that the people who have done the diagnosis, who have done the CT scans who have done the EEGs are unambiguous in their diagnosis. The fact of the matter is research on people who are in a PVS shows they never, ever recover the way the Congressman suggested Terri Schiavo might. It’s a tragedy, and it’s a tragedy that unfortunately is being exploited for purposes that I’m troubled by deeply. I think that some of the people in Congress sincerely believe what they’ve heard. But what they’ve been heard —- what they’ve been told, rather, what they have heard is false. They’ve been deceived by people who are trying to advance an agenda that says the judges are all wrong. It’s about judicial activism. That it has to do with religion. It has to do with abortion. It has to do with judicial activism. It has to do with trying to inject values of extremists into mainstream culture. People are taken off medical treatment every day. We’ve settled that in medicine law and ethics, we’ve settled it across the faith traditions. And we have never had to deal with the idea that because you terminate treatment, because you withdraw a medical intervention, you’re doing anything bad to anybody. Valid consent and refusal are the foundation -—

AMY GOODMAN: Stephen Drake?

STEPHEN DRAKE: There’s always been a problem when it comes to third party decisions. I mean, these are the same kind of noises that were being made, you know, what, 20 years ago, when it came to what was a fairly widespread practice of killing off infants with disabilities through with holding withdrawal of treatment. Again, those got defended as private, painful decisions between doctors and families. And, of course, you had the same uncomfortable alliance, you know, of these conservative pro-life groups and disability groups, you know, who find themselves, you know, opposing these things, not there for the same reason, clearly a different political agenda. You know, we’re looking at rights. I don’t agree with the judicial activism label, don’t agree with this being a religious issue, don’t agree, you know, with this being a conservative issue. To us, this is a rights issue. It’s the rights of people under guardianship.

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