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The Schiavo Case Seven Years Later

New Messaging From Politicians

Sometimes progress toward human dignity seems agonizingly slow, especially affirming the role of choice at the end of life. So it’s heartening when evidence of seismic change shows up. Last week’s presidential debate lifted our hearts for this reason.

Contenders for the Republican nomination were in Tampa, and questioners brought up Terri Schiavo. Mrs. Schiavo, you’ll recall, had been in a permanent vegetative state for fifteen years in 2005, when the family’s conflict over whether she would want continued artificial feeding rocked the state of Florida and riveted the nation. State courts had already ruled repeatedly and consistently that the tube feeding should be discontinued, consistent with her expressed wishes prior to the event that rendered her insensate.

Politicians in Florida and Washington, D.C., were convinced voters wanted them to intervene in the tragic deliberations of the divided family. Procedural manipulations and governmental excesses stoked a spectacle of controversy for years. The litany of hearings, re-hearings and appeals is too long to recite here. Toward the end Congress went to extraordinary lengths to override Florida state courts. They issued a subpoena for the vegetative Mrs. Schiavo to appear at a hearing and passed a special law to override jurisdiction of the state, placing the case back in the federal court that had repeatedly deferred to its state counterpart. All the lawmakers believed in states’ rights, of course.

Senator Frist, a cardiac surgeon, assessed Mrs. Schiavo’s neurological function from the Senate floor via a short video clip of her head movements. Posturing, sanctimonious politicians of all stripes declared their devotion to life and their outrage that a feeding tube could be considered futile medical treatment.

On March 20, 2005, the New York Times front page reported, “Congress Ready to Approve Bill in Schiavo Case,” and detailed the fervor that had seized that august body. Mine was a lone voice of alarm in the article. “‘In this political climate, with this kind of thing going on in Congress, everyone must take steps to protect themselves — making an advance directive, documenting their wishes, making sure their loved ones know about them,’ said Barbara Coombs Lee, CEO of Compassion & Choices. … ‘The greatest fear of our constituents is that other people — complete strangers — will make end-of-life decisions for them,’ Ms. Lee added. ‘And God forbid that it would be politicians.’”

I’ve always been proud of that quote. Because as it turned out, most of the nation agreed with me. Congress did pass the bill, in the middle of the night on Palm Sunday, and President Bush flew overnight from Texas in his jammies to sign it 30 minutes later. Nevertheless, federal courts followed the law, refrained from intervening, and Schiavo died peacefully March 31st.

One month later Harris polled Americans on how they viewed the Schiavo debacle. Congress fared worst, with 58% of respondents saying they disapproved of Congress’s behavior. Only 35% approved. Florida lawmakers fared almost as badly, with 57% disapproval, 33% approval. The president and governor came off little better.

In May 2005 The New York Times Magazine published an in-depth profile of Rick Santorum. It reported that Santorum was one of the lead senators urging federal intervention in the Terri Schiavo case. He told the author that he informed Bill Frist, the majority leader, that he (Santorum) would keep the Senate in session through its Easter break if lawmakers tried to adjourn without first intruding in the Schiavo case. Santorum is quoted, ”I said to the leader: ‘We’re not leaving here until we pass this.’”

Fast-forward to last month’s debate in Tampa. The political calculation has changed drastically in seven years, and Santorum backs away substantially from his enthusiasm of 2005. In Tampa he asserted that he “did not call for congressional intervention.” Rather, “I called for judicial intervention on behalf of the parents.”

Oh, I see the difference! But after 7 years, 14 appeals, 5 federal lawsuits and 3 denials from the U.S. Supreme Court, only an Act of Congress could have prolonged the courtroom circus any further. That is what Santorum fought for, and that is what the people judged unseemly meddling. In contrast, last month Santorum even affirmed the morality of refusing resuscitative efforts, adding, “I think that’s a decision that people should be able to make.”

Santorum’s fellow debaters chimed in with updated political messaging. Newt Gingrich went so far as to say the whole Schiavo controversy “has nothing to do with whether or not you as a citizen have a right to have your own end-of-life prescription, which is totally appropriate for you to do as a matter of your values in consultation with your doctor.” It’s anybody’s guess whether Gingrich really supports the medical practice of aid in dying; but on its face, his statement would resonate with the 70% of Americans who do.

Ron Paul said the Schiavo case was “way out of proportion” and he would have preferred to see the decision made at the state level, which, of course, is where it was ultimately made.

I don’t pull up this history to accuse politicians of insincerity or point out inconsistencies. I just want folks to notice that our nation has changed, and expectations of our politicians have changed when it comes to end-of-life decisions.

Seven years ago it was different. But today we expect politicians to stay out of the personal end-of-life choices we make, in consultation with our physicians and consistent with our own beliefs and values. We expect the people we elect to show some respect for the heartbreaking decisions families make every day at the bedsides of their loved ones. Politicians should not limit those choices arbitrarily and should never seek to impose their own moral judgment on complex deliberations in a religiously diverse nation.

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Barbara Coombs Lee is President of Compassion & Choices, a non-profit organization dedicated to expanding and protecting the rights of the terminally ill. She practiced as a nurse and physician assistant for 25 years before beginning a career in law and health

Since then she has devoted her professional life to individual choice and empowerment in health care. As a private attorney, as counsel to the Oregon State Senate, as a managed care executive and finally as Chief Petitioner for Oregon’s Death with Dignity Act, she has championed initiatives that enable individuals to consider a full range of choices and be full participants in their health care decisions.

Ms. Lee took her undergraduate education at Vassar College and Cornell University and obtained advanced degrees in law and medicine from the University of Washington and Lewis & Clark College. She holds an adjunct position at the University of Washington School of Public Health and Preventative Medicine and is a member of the Oregon State Bar.

She has been interviewed by NBC News, CNN Crossfire, 60 Minutes, McNeil Lehrer News Hour, NPR, The Today Show, and Bill Moyers’ “On Death and Dying” among others. She has also testified before the US Congress on end-of-life issues.

She has been recognized with a national health Policy Fellowship, Boeringer Ingeheim Foundation, an American Jurisprudence Award for outstanding performance in the study of medical law and a National Health Lawyers Association scholarship for outstanding student achievement.

Ms. Coombs Lee has been a presenter at programs sponsored by American Bar Association, Older Women’s League, American Pain Society, Oregon State Bar, Americans for Better Care of The Dying, American Associations for the Advancement of Science, End of Life Concerns, and the American Pain Society. She spoke at the World Federation Right to Die conference in Zurich, Boston and Brussels.
Her audiences have included the Oregon Gerontological Association: the California Nurse Assembly & Education Conference. Her debate “Doctor Assisted Suicide: Compassionate Alternative or Murder” with James Bopp, Jr., was produced by “Justice Talking” a project of the University of Pennsylvania’s Annenberg Public Policy Center
for Public Radio.

Since Gonzales v. Oregon, the lawsuit defending the Oregon assisted-dying law, Ms. Coombs Lee has been interviewed by many of the nation’s newspapers. She has been quoted in the New York Times, The Washington Post, The Chicago Tribune, and on NPR’s All Things Considered. Recently, The Harvey M. Meyerhoff Lectures on Ethics at the End of Life hosted her presentation “Local Medical Practice and the Federal Threat” at Johns Hopkins University.