Schiavo’s legacy: Has anything really changed one year later?

Right of refusal unchanged; public interest in end of life increased

Just over a year ago, Terri Schiavo was the center of worldwide attention in several different roles — severely brain-injured bulimic, daughter and wife trapped in a public family fight, fuel for debates over right to life vs. right to refuse, and subject of endless talk show discussion. To many, her case was the most important battle between the camps, one urging a "culture of life" and the other just as adamant that people should be allowed to choose how and when they will die.

Schiavo died March 31, 2005, but Schiavo as a cause is still alive. At the one-year anniversary of her death, politicians, legal experts, medical professionals, and ethicists are assessing what, if any, difference the fight over Terri Schiavo made in the landscape of patient autonomy, right to life, assessment of brain functioning, and the role of the government in personal medical decisions.

"The Schiavo case didn’t change the law. It didn’t change medicine. It didn’t change bioethics." That’s the conclusion reached by George J. Annas, JD, MPH, a professor in the Boston University (BU) schools of law, medicine, and public health. BU dedicated its annual health law conference — held exactly one year to the day after Schiavo’s death — to looking back at the political, medical, ethical, and legal lessons learned from the case.

The biggest impact the Schiavo case had, Annas says, was political. Schiavo became an icon to groups that urge preservation of life whenever possible and to opposing organizations that warn of attacks on patient autonomy, a struggle that led Congress to cross a line that many Americans say was out of bounds.

Congressional intervention remains controversial

Experts who spoke with Medical Ethics Advisor and others who addressed the BU conference largely concur that, whether or not they agree with Congress stepping in to force the case into federal court, intervention was perhaps the most controversial aspect of the Schiavo case.

Rep. Barney Frank (D-MA) helped lead the opposition in the House to the emergency federal statute that moved the Schiavo case into federal court after state courts had repeatedly upheld Michael Schiavo’s right to have his wife’s artificial nutrition and hydration, which had kept her alive for 13 years after she fell into a persistent or permanent vegetative state (PVS), withdrawn.

Other members of Congress, led by Sen. Bill Frist (R-TN), a heart-lung surgeon, were determined to intervene to keep Schiavo alive until her condition could be re-evaluated; opponents fought unsuccessfully to block the emergency statute. But those in Congress who fought for the bill as well as those who opposed it soon realized they hadn’t accurately gauged public opinion, Frank says now.

"In my entire career, I have never seen the political community so misjudge public opinion," says Frank. "The public’s reaction was overwhelmingly, You guys did what?’"

Frist, who famously weighed in during debate over the bill with the opinion that Schiavo appeared "responsive" in a home video given to him by her family, told the New York Times in April that he now realizes the public does not want Congress involved in individual cases.

An ABC News poll conducted in March 2005 and again in March 2006 found that Democrats, Republicans, and independents were equally likely to say removing Schiavo’s feeding tube was the right thing to do. Sixty-five percent of Republicans and the same percentage of Democrats said it was the right thing to do; 25% of Democrats said it was the wrong thing to do, and 29% of Republicans said it was wrong.

Frank says the "egregious" Schiavo statute and subsequent negative public reaction cause him to conclude that such an intervention won’t happen again in Congress. But some political science scholars have suggested that given the influence and pressure brought to bear in some right-to-life and patient autonomy cases, the Schiavo case might not be the last time Capitol Hill intervenes in an individual case.

At the state level, however, new laws are going on the books that Cynda Rushton, DNSc, RN, FAAN, clinical nurse specialist in ethics at Johns Hopkins Children’s Center in Baltimore, says are likely the result of the Schiavo case.

"I think an impact has been that we’ve seen a number of states attempting to enact conscientious objection legislation [permitting health care providers to refuse to deliver medical care that is in conflict with their own values]," says Rushton. "It’s clearly linked to this case, this kind of conflict, situations that challenge individuals’ core values and what they think is appropriate at the end of life."

Right of refusal unchanged

Experts say the right of patients or their designated surrogates to refuse treatment was firmly established before Schiavo, and remains so despite the bitter court fight between Schiavo’s husband — who was her legal surrogate — and her parents, who adamantly opposed the withdrawal of hydration and nutrition on religious grounds and personal beliefs.

While the Schiavo case was not the first time a family’s dispute over withdrawing care from an incompetent patient has been taken to court, Schiavo drew more attention because of publicity generated by her parents and by organizations polarized over the issues of refusal of treatment and right to life.

"In the prior cases, the families were very private," says Ronald Cranford, MD, professor of neurology at the University of Minnesota Medical School and faculty associate of the Center for Bioethics at the university, a nationally recognized expert on PVS. Cranford examined Schiavo on behalf of the court as the case wound its way through Florida state courts. "The conflict is privacy for the family vs. educating people on the issues."

Ultimately, however, the Schiavo case was a simple one that just went badly for one family, and in doing so, drew the public into the argument. Cranford points out that before the Terri Schiavo case arose, patients and their surrogates could legally refuse care; that was not changed by any of the court challenges during Schiavo’s life or by any legislation after her death.

BU professor Wendy K. Mariner, JD, LLM, MPH, concurs that laws giving patients the right to refuse lifesaving or life-sustaining treatments are unchanged; though she points out that the Schiavo case wasn’t about whether patients can refuse, but about knowing what an incompetent or unconscious patient would want.

While the case might not have changed the rules for patient self-determination, Rushton says, it did change how people think about those rules and those decisions.

"I think one of the impacts is it sort of brings front and center the issues of private vs. public decision making. I think people felt a great deal of regret about the impact on the people who were involved — her family and her husband — and I also think we’re left with the ambiguity that is always part of trying to make good decisions in individual cases," Rushton says.

She says one shortcoming Schiavo’s case highlighted is the failure to consider the role of personal religious beliefs in the process.

"We see how important good facts are in [the decision-making process], but I think this shows us again that you can’t argue faith with fact, and so we need to be thinking of models that engage both spirituality and intellect," she suggests. So while there may not be any legal or ethical difference between taking patients who can’t breathe on their own off a ventilator and removing feeding and hydration tubes from those who can’t eat or swallow on their own, physicians need to be sensitive to the fact that the two actions are very different in the minds of some, whether for religious, cultural, or aesthetic reasons.

Polls gauge effects on public opinion

The Schiavo case might not have changed the legalities of refusing or withdrawing treatment; but if anything, it strengthened public awareness of the issue and support for making clear one’s preferences for receiving or withdrawing lifesaving or life-sustaining treatment, according to several polls conducted in recent months.

The Pew Research Center for the People and the Press conducted a poll in November 2005 to gauge attitudes about circumstances in which patients or their surrogates should be permitted to refuse treatment or request that all possible measures be taken to preserve and prolong life.

Of the 1,500 people interviewed in the Pew Center survey, 70% said there are circumstances in which patients should be allowed to die, and 22% said health care providers should always do everything possible to save patients’ lives. Pew researchers say that compared to 1990 data, public attitudes on those issues are unchanged despite the Schiavo controversy.

Eighty-four percent of those surveyed said they approve of laws allowing terminally ill patients to decide whether to be kept alive through medical treatment, and 74% said that if a terminally ill patient is unable to communicate, his or her closest family member should decide whether to continue treatment. Fifteen percent said relatives should not be allowed to make such decisions.

While most people supported the idea of stopping medical treatment in some circumstances, fewer said they would opt to stop medical treatment if they themselves were the patients; 43% said that if faced with a condition in which there was no prospect of improvement and difficulty functioning they would still tell their doctors to do everything possible, while 42% said they would ask that treatment be halted.

When asked specifically about the Schiavo case, 72% of those polled said Congress should have stayed out of the case, and 17% said Congress did the right thing by moving the case into federal court.

The ABC News survey conducted in March 2006 found that American’s views on the Schiavo case were unchanged from shortly before her death; 64% of the 1,000 people surveyed said they support the decision to remove Schiavo’s feeding tube; a poll conducted at the time the tube was removed in March 2005 showed that 63% of those surveyed agreed with the decision.

Another measurable effect of the Schiavo debate has been the jump in the number of people requesting information on living wills, durable power of attorney, and health care proxies. The U.S. Living Will Registry, which registers living wills for electronic access by doctors, family members, and surrogates, reports that visits to its web site increased from about 500 per day before the Schiavo case gained prominence to as many as 50,000 a day when the case was at peak public interest.

How to approach the EOL discussion

Ethicists have speculated in print and in talks since Schiavo’s death about how — and if — physicians can prevent family disagreements over ending or starting life-sustaining care in cases where there is no indication for recovery.

"Could an ethics consult have helped in Schiavo? Maybe not," says Cranford. "There were a lot of cultural differences, conflicts between the parents and spouse. But a consult early on might have helped."

While some clinical ethicists disagree, Cranford advocates involving non-medical intervention with clergy, social workers, or others whose input might be meaningful to the patient or surrogate if it would help work out disputes.

"I would urge [to the family] the use of aggressive palliative care, to ensure the patient’s comfort even to the point of coma," he says. "That lets you get rid of treatment and equipment that doesn’t do any good," resulting in a less stressful atmosphere for the family.

Rushton says physicians’ and institutions’ approach to end-of-life discussions with families is important to how the family accepts and processes the information they’re given.

"[At Johns Hopkins] we changed our approach to end-of-life discussion several years ago, away from a do not resuscitate’ model, which is the model of abandonment, to a model that emphasizes what we will do, rather than what we are taking away," she says.

Other suggestions for having end-of-life conversations with family members who are contemplating ceasing life-sustaining treatments include:

  • Avoid using the word "futile" — to family members it can sound as if their loved one is not deemed worthy of effort. Likewise, the term "withdrawal of care" may be interpreted to mean the patient will be abandoned;
  • Keep the conversation patient-focused, not centered on the family or the health care providers;
  • Ask family members what their understanding of the patient’s condition is before presenting clinical information, so that the conversation starts at that point;
  • Demonstrate empathy for the family’s grief, and avoid the appearance of rushing the patient or surrogate to a decision;
  • Acknowledge conflicts, encourage discussions of the differences between hoped-for and likely outcomes;
  • When the discussion is about stopping artificial nutrition and hydration, using the term "gastric tube" instead of "feeding tube" removes some of the social connotations of being "fed," and may make the response less emotional.

"I think the good that has come out of [the Schiavo case] is the increased awareness of end-of-life issues, but I think it still leaves some unanswered questions as to how we as health care professionals can practice with integrity when we have very distinct personal values about the boundaries of end-of-life care," says Rushton. "How do we not abandon patients as we exercise our own values?"

Sources/Resources

  • Ronald E. Cranford, MD, professor of neurology at University of Minnesota Medical School; faculty associate of the Center for Bioethics at the University of Minnesota. E-mail: cranf001@umn.edu.
  • Cynda Hylton Rushton, DNSc, RN, FAAN, clinical nurse specialist in ethics, Johns Hopkins Children’s Center, Baltimore, MD. E-mail: CRUSHTON@son.jhmi.edu.
  • George Annas, JD, MPH, professor and chair, department of health law, bioethics, and human rights, Boston University School of Public Health; law professor, Boston University School of Law; professor, sociomedical sciences and community medicine, Boston University School of Medicine. E-mail: annasgj@bu.edu.
  • The Pew Research Center for the People and the Press, 1615 L Street, NW, Suite 700, Washington, DC 20036. Phone: (202) 419-4350. Survey report, "Strong Public Support for Right to Die: More Americans Discussing — and Planning — End-of-Life Treatment," Jan. 5, 2006, available on-line at www.people-press.org/reports.
  • ABC News, "More Than Six in 10 Still Support Decision in Schiavo Case" poll, March 27, 2006, available on-line at www.abcnews.go.com/Health/PollVault/story?id=1771492.