Bioethicists Get Legacy of Terri Schiavo Death Wrong

Twenty years ago today, Terri Schiavo’s feeding tube was withdrawn with court approval, commencing a cruel deprivation of sustenance that resulted in her death by dehydration 13 days later.

For those who may not remember, the case became the most hotly contested bioethics issue since Roe v. Wade as Terri’s husband Michael fought in courts and in the media with her parents and siblings over his desire to remove all Terri’s food and fluids. In the end, he won — and Terri died.

Now, two bioethicists on the influential Hastings Center blog decry the case as wrongly brought. They get some facts wrong and omit crucial information — like that Michael was living with another woman with whom he fathered two children during the litigation — but let’s not relitigate the case here. (Read this post for a more complete discussion.)

The authors, Arthur Caplan and Dominic Sisti, and I do agree that the Schiavo case was a cultural “canary in the coal mine,” but for diametrically opposing reasons. They complain that it has empowered the wrong cultural forces into political prominence:

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.

The Schiavo case did not “embolden” the pro-life movement. It was thriving when the case hit the headlines. Moreover, some of the most vociferous opponents of dehydrating Terri to death were disability rights activists — who, generally speaking, are politically liberal and not pro-life on abortion.

Caplan and Sisti complain that the case led to intrusive health-care policies.

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.

Good grief, no:

• The Schiavo case did not cause the overturning of Roe v. Wade. Rather, the key precedent was an assisted-suicide case called Glucksberg v. Washington.
• “Gender-affirming care” for children is not supported by “what medicine and science have to say.”
• Vaccine mandates impede the making of “personal medical decisions.” Indeed, Covid vaccine mandates (supported by Caplan) were “autocratic” and — as the thousands of fired members of the military, medical personnel, and others will attest — forced people to take jabs or lose their jobs. How’s that for “weaponized deeply personal medical decisions”?
• And if closing schools for so long weren’t “draconian regulations,” I don’t know what were.

The Schiavo case was a tragedy, but not for the reasons Caplan and Sisti claim. Before Schiavo’s death, most people were shocked that feeding tubes could be removed from disabled people who can metabolize food and water. After the case, polling majorities supported doing so. With that, people with severe brain injuries became a disposable caste.

The case also elevated the culture of death into a conflagration. It boosted the passage of assisted suicide laws. Euthanasia groups and bioethicists now teach people who can eat and drink how to commit suicide by self-starvation and dehydration (VSED). It has gotten to the point that the usual euthanasia suspects even campaign for legalizing advance directives that force care givers to withhold orally received food and water from dementia patients even if the patient eats and drinks willingly.

Yes, Schiavo was a horrible tipping point. But because the family lost, not because they were supported by millions of people in “Terri’s fight.”

I just interviewed Terri’s brother, Bobby Schindler, on my Humanize podcast. He discusses his memories about the case and the good works engaged by the Terri Schiavo Life and Hope Network defending the medically vulnerable. To listen, hit this link.