Bioethics Forum Essay

Terri Schiavo’s Legacy

Many think that the decision 20 years ago to permit Terri Schiavo to die was a victory for medical choice. On the contrary, her death triggered a series of events that have corroded individual control over medical care in the United States.

Left completely and permanently unconscious by a cardiac arrest, Schiavo’s life was sustained for over a decade by medical technology in a long-term care facility in Florida. When it became clear, back in 1998, that Terri would never regain consciousness, her husband, Michael, asked that her feeding tube be withdrawn and that she be allowed to die. He said Terri would not want to exist in a permanently unconscious state. Terri’s parents, the Schindlers, disagreed and with the support of pro-life groups, maintained, falsely, that she was conscious while lodging many court proceedings against Michael’s authority, first in Florida and then in federal courts.

The Schiavo case involved 14 appeals and numerous legal motions, petitions, and hearings in the Florida courts; five suits in federal district court; extensive political intervention by the Florida state legislature, Florida Governor Jeb Bush, the U.S. Congress, and President George W. Bush; and four denials of certiorari from the Supreme Court of the United States in response to appeals. This was likely the most closely examined end-of-life case in the history of medicine. Each and every time, Terri Schiavo’s values, as espoused by her spouse who knew her best and had legal authority, were, rightly, supported. After seven years of fighting Terri Schiavo was allowed to die on March 31, 2005.

Terri Schiavo’s tragic saga mobilized a large contingent from the prolife movement in the U.S. and overseas, which, of course, meant certain politicians would follow their lead. We saw a prominent senator and transplant surgeon, Bill Frist, violate basic medical ethics when he stood on the floor of the Senate to make diagnostic claims about Terri Schiavo based solely on videotaped footage—which turned out to be misleading. We even saw George W. Bush drop everything on Palm Sunday and fly back to Washington to sign a so-called relief act, a specific law written just for the Schindlers to enable them to take their case to federal court. All these political machinations merely prolonged the tragedy.  

The Schiavo affair quickly became a battlefront in the larger culture war raging over personal choices at both the beginning of life and at the end of life. In retrospect, Schiavo launched a new, emboldened prolife movement, one that would eventually lead to conservative rule in state houses across the U.S. and the election, twice, of Donald Trump. The seeding of a new ultraconservative judiciary would support a strategic assault on medical privacy that would eventually lead to the end of legal abortion protection in Dobbs. Schiavo established a dangerous precedent in which politicians determined medical care, not patients and not their spouses.

Today we see how the culture wars are being played out minute by minute on social media by policymakers and the current president. Where there is political gain to be had, politicians are eager to exploit personal tragedies, spinning narratives that serve their ideology. The Schiavo case set a new precedent for how personal medical decisions can be politicized and weaponized for broader ideological battles and victories in the culture wars. Evidence and science now take a back seat to politics, emotional appeals, and spin.

We hear the echoes of Schiavo’s death in today’s debates over reproductive rights, end-of-life care, transgender care, vaccinations, and medical privacy more generally. The end of Roe v. Wade, the continued attacks on gender-affirming care, and the looming threats to contraceptive access all stem from the foundational fight over Terri’s bodily autonomy. Today’s autocratic playbook remains unchanged from those days: intrude upon and weaponize deeply personal medical decisions, rally the support of a mob, enact draconian regulations, ignore what medicine and science have to say.

Few knew it then, but the case of Terri Schiavo was a canary in the coal mine, warning us of bad things to come. The fight to honor Terri’s values in death was won, but the broader battle over government intrusion versus health care privacy rages on.

Arthur Caplan, PhD, is the head of the Division of Medical Ethics at the NYU Grossman School of Medicine and a Hastings Center Fellow. @ArthurCaplan  artcap.bsky.social

Dominic Sisti, PhD, is an associate professor in the Department of Medical Ethics & Health Policy at the University of Pennsylvania’s Perelman School of Medicine and a Hastings Center Fellow. dominicsisti.bsky.social