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First published in Hospitals & Health Networks OnLine, 7 June 2005
The case of Terri Schiavo raised disturbing questions about the hypocrisy of which we are all guilty when it comes to difficult health care issues.
Joseph Merrick (1862-1890), often mistakenly referred to as John, was an Englishman afflicted with a horribly disfiguring disease, originally thought to be neurofibramatosis but more recently identified as Proteus syndrome. He lived an extremely difficult life--rejected by his family, working in menial jobs on the streets, spending time in the workhouse because of extreme poverty, being shown to medical societies as a curiosity, being displayed at carnival sideshows and freak shows, and eventually living and dying at London's Whitechapel Hospital after his story became known and there was public outcry that he receive some sort of protection. He became known as the Elephant Man because of a folk belief that his mother had been frightened by an elephant at a circus while she was pregnant, thus producing his deformities.
Bernard Pomerance later wrote a superb play, The Elephant Man, about Joseph Merrick's life and the people he encountered. At one point in the play, all the major characters gather around the afflicted man and talk about how they perceive him. In each case, the character is transferring his or her own wants, needs and hopes to Merrick, as though, for them at least, he does not exist as a distinct human being.
I was reminded of that scene during the remarkable last days of Terri Schiavo, the woman who died March 31 after spending a decade and a half in a persistent vegetative state (PVS), at least according to most observers. Her EEG was flat, and she survived through the use of artificial nutrition and hydration.
Everyone knows what happened: A deep schism between her husband, Michael, who was her legal guardian, and her parents, Robert and Mary Schindler. A years-long fight over whether she should be kept on life-sustaining technology. An offer to Michael Schiavo of a million dollars from an outsider if he would transfer custody. Repeated government interventions on the federal and state level. Protests from abortion opponents, the Vatican, and many other quarters. A Florida state court eventually decided that Mrs. Schiavo would not want to be maintained by tube feeding under the current circumstances. Mr. Schiavo had her feeding tube disconnected. More government efforts; more protests. She finally died.
There are many aspects to this sad story, and one of the most disheartening is the hypocrisy demonstrated by just about everyone involved, as well as any number of people who had no right to be involved, but who chose to involve themselves.
In terms of the family dispute, both her husband and her parents claimed that they knew what Mrs. Schiavo would have wanted; the problem was that their claims were in complete opposition to each other. It was also reported, rather late in the proceedings, that Mr. Schiavo and the Schindlers had once been very close--until Mr. Schiavo won a large malpractice award against the physician who had been overseeing Mrs. Schiavo's fertility treatments. A fight over who would get how much of the money, and how it would be spent, erupted; and the once close in-laws became profoundly estranged, with each side claiming they spoke for Mrs. Schiavo.
Then the advocates rushed onto the scene. A man from Illinois attempted to steal a gun so that he could, in his words, "rescue Terri," one presumes by shooting and possibly killing police officers and unarmed hospice workers. That is, we must admit, a novel approach to protecting the sanctity of human life.
Randall Terry, head of Operation Rescue, an antiabortion group, marshaled his forces and began demonstrations in front of the Florida hospice where Mrs. Schiavo was a patient. He insisted on referring to Mrs. Schiavo as "Terri," although he had never met her, something that many of us might perceive as patronizing.
News reports noted that the people who were taking part in the Randall Terry demonstrations were the same people who tend to show up at antiabortion events, as though this were somehow surprising. The same people on the other side of the debate tend to show up at abortion rights events. They're activists, after all.
Frankly, no one on either side can claim philosophical consistency. As a rule, conservatives support capital punishment and oppose abortion rights. As a rule, liberals oppose capital punishment and support abortion rights. The Catholic position is far more consistent in opposing both practices, but its opposition to the use of condoms to prevent the spread of AIDS has undoubtedly contributed, however inadvertently or regrettably, to the deaths of thousands of people, especially in the developing world where treatment of the disease is hard to come by.
In a further irony, a major initiative by the U.S. Conference of Catholic Bishops to end the use of capital punishment in the United States, which was launched the week before Easter, received very little press attention because it was drowned out by the cacophony around Mrs. Schiavo.
Meanwhile, as the advocates rallied on, the wheels of government started turning remarkably quickly at the request of a variety of people, including the Schindlers, who had also filed several state and federal lawsuits. The Florida legislature passed a law allowing Governor Jeb Bush to keep Mrs. Schiavo's feeding tube in place. Congress got into the act, passing very specific legislation allowing federal courts to have jurisdiction in the matter, and issuing a subpoena for Mrs. Schiavo to appear before them, an interesting request to someone with a flat EEG. President Bush rushed back from vacation to sign the legislation.
There were some sideshow moments that Joseph Merrick would have appreciated. Senate Majority Leader Bill Frist (R-Tenn.), a cardiac transplant surgeon (not a neurologist), viewed a years-old videotape of Mrs. Schiavo and announced that he was not convinced that she was in a PVS, a landmark moment in long-distance diagnosis. House Majority Leader Tom DeLay (R-Texas) told the Family Research Council that the "critical issue" was "a fight for life, whether it be euthanasia or abortion."
(Just for the record, euthanasia is the conscious, active dispatching, with or without permission, of a person who is alive on his or her own and is not dependent on artificial life support. A person who would not be alive without such support is not a candidate for euthanasia. Bioethics has long made a distinction between life that is going on its own and life that is being prolonged by artificial means.)
DeLay, who is under fire for a variety of alleged ethics violations, further said that the effort to remove Mrs. Schiavo's feeding tube and the attacks against him were cut from the same cloth, that they were both part of a conspiracy to "destroy the conservative movement." Funny, I don't recall Mrs. Schiavo accepting foreign junkets from lobbyists or misusing campaign contributions.
As George Annas, chairman of the department of health law, bioethics and human rights at Boston University, observed, "This is not about Terri Schiavo. I think this is about abortion and stem cells."
And the same House of Representatives that interrupted its vacation to pass the law to try to keep Mrs. Schiavo fed also approved a budget resolution that includes more than $15 billion in cuts to Medicaid, the very program that paid for much of her care for years. Florida, where Mrs. Schiavo lived and died, has asked the federal government for a waiver to cap what it spends on Medicaid and to turn the program over to private insurers, who will be able to cut benefits more or less at will. And as anyone who has tried to gain eligibility for Medicare disability benefits will attest, some disabled people get more government sympathy and attention than others.
Years ago, bioethicist H. Tristram Engelhardt pointed out that in the human mind, there is a difference between the "identified life"--someone we know or to whom we can relate--and the "statistical life"--that mass of unknown infant mortalities and deaths from undetected cancers that comes to us only in the form of data. We care far more about the former than about the latter. Abstention on the Left
As for many congressional liberals--who have been so outspoken in their opposition to the Iraq War and restrictions on abortions, and in their support of stem cell research and patients' rights--when it came down to the vote on the Schiavo matter, they took an interesting stance: They abstained. On a vote about something that could affect every person in this country, they decided that sitting on the fence was the best position. Well, maybe that was the safest ground, but even if they knew the vote would go against them (and it was going to), they had a moral responsibility to make it known where they stood. They didn't honor it.
And toward the end, out of the Left, riding to the rescue, came none other than Jesse Jackson Sr., who prayed with the Schindlers and demanded the reinstatement of the feeding tube. It is interesting that prior to that time, Rev. Jackson had been conspicuously silent on end-of-life issues generally and the Schiavo case in particular, until the latter deteriorated into a media frenzy offering lots of television cameras and free air time.
Something else interesting occurred as events wound toward the inevitable end: Public opinion polls started to come in. A CBS News poll conducted in late March found that 60 percent of those surveyed did not think the tube should be reinserted, and 82 percent thought government should not be involved in the situation. An ABC News poll reported that 63 percent of people surveyed did not think the tube should be reinserted; 70 percent opposed government involvement in the case. A Gallup poll found that 59 percent of respondents said they would withdraw the tube if they were Mrs. Schiavo's guardian. It seemed obvious that government actions in this case had truly frightened the majority of Americans, who had to wonder what might happen to them if they became unable to voice their wishes and offered an attractive target for other people's causes.
But these surveys hold no moral weight. The views of people being asked about a stranger's highly private and personal situation should be judged with the same attitude they expressed toward government: It isn't their business, either.
No, the apparent impact of the polls was that most of the congressional and other zealots who had been so passionate about the case fell curiously silent. The White House went back to stumping for changes in Social Security. Members of Congress went back on vacation. As Time magazine (April 4, p. 24) put it, "[Republican congressional leaders] were suddenly as quiet as the Democrats had been all along; [they] declined opportunities to speak about Schiavo on the Sunday-morning talk shows. 'The winners of this are going to be the people who stop talking about it,' said a senior Republican strategist."
The silence was more pervasive than that. Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, pointed out that most organized religions, most medical societies, many other health care associations, advocates for the disabled, neurology groups and many other organizations that could have contributed valuable experience and insight to the debate kept their mouths firmly shut. (A notable exception was the California Medical Association, which voiced strong opposition to government involvement in the case.) "These groups owe it to us to end their silence and to weigh in with their thinking," Caplan wrote for MSNBC on March 31. "Cowardice in the face of controversy is not a virtue."
This does not mean that these groups should have involved themselves in the case, but rather that their opinions and experience could well have raised the quality of the discussion.
For his trouble, Caplan was demonized by the religious right because of a moderate, well-reasoned editorial he wrote on March 18 for MSNBC. He was accused by some as being part of a left-wing conspiracy. In fact, Professor Caplan, whom I have known for decades, has taken many stances in his career that are anything but doctrinaire leftist thinking. Even the views he expressed in his editorial had more to do with the sanctity of marriage and of guardianship than with any notion of rights.
Not content with going after ethicists, toward the end of Mrs. Schiavo's life, those who supported her parents' position turned their rhetorical guns against Florida Gov. Jeb Bush, saying he had not done enough to save her life. In fact, he had worked for years to prevent the tube from being withdrawn and had never wavered in his position. In the end, he simply said that he could not violate the laws he was sworn to uphold. He seemed a most unfortunate choice for conservative criticism.
About the only other consistency we can find anywhere in this sorry tale is that of the judiciary, who, from Florida state courts to the U.S. Supreme Court, ruled without exception that Mr. Schiavo was the legal guardian, that the suits and appeals were without merit, that the law was clear, and that it was not a matter for the courts.
This led, not surprisingly, to vilification of the jurists involved, including death threats against several of them--threats that should be taken very seriously, given the murders of a federal judge's family in Chicago and of a superior court judge in Atlanta in recent months. Again, showing one's support for the sanctity of life by issuing death threats seems a trifle inconsistent.
Christopher Caldwell, in the Financial Times for April 2, wrote of the late Pope John Paul II that he believed in "loving the whole, God-created person, and not using him or her as a means to affirm oneself." Joseph Merrick died young and alone, unable to bridge the yawning gulf between him and intolerant Victorian society, having been used as everything from a sideshow freak to a medical specimen. One hundred and fifteen years later, Terry Schiavo died surrounded by people who were so busy exploiting her situation for their own ends that they failed to honor her dignity, her privacy or her personhood.
(For a brilliant history and analysis of the context of this case and its legal implications, see George Annas' report, "Culture of Life Politics at the Bedside--The Case of Terri Schiavo," in the April 21, 2005, issue of the New England Journal of Medicine, pp. 1710-1715.)
The Schiavo case led hundreds of thousands of people--probably millions--to execute living wills and durable powers of attorney for health care. It remains the best way to protect yourself and your loved ones from unwanted consequences. For information on advance directives, please visit www.putitinwriting.org. Websites with state-specific forms available for downloading include www.uslegalforms.com, www.uslivingwillregistry.com, and www.medlawplus.com. Your local hospital or hospital association likely has forms, and your physician might as well.--E.F.
First published in Hospitals & Health Networks OnLine, 7 June 2005
© Emily Friedman 2005
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