In the 20 years since the death of Terri Schiavo, pro-life advocates of severely disabled or end-of-life patients have not had the kinds of significant culture-war victories that the anti-abortion movement has won in recent years. Instead, Christian bioethicists and activists fear there’s been a lack of progress, or even lost ground, in medical care for vulnerable patients in dire cases.
Schiavo’s case, which shook the nation in the mid-2000s, was a rare moment when the debate over when to remove artificial means of life support drew worldwide attention.
The pro-life movement, which opposed the withdrawal of life support from Schiavo in March 2005, has had paradigm-shifting legislative and judicial victories related to abortion in the subsequent 20 years, particularly the Dobbs v. Jackson Women’s Health Organization Supreme Court decision that overturned federal constitutional protections for abortion.
But pro-life advocates fighting against euthanasia, physician-assisted suicide, and medical care for those with little chance to recover have not had the same degree of success. In fact, they’ve seen a string of losses in terms of states legalizing assisted suicide. And more national governments have approved similar measures — most notably, Canada legalized assisted suicide, called Medical Assistance in Dying, or MAiD, in June 2016.
Catholic and pro-life medical ethicist Charles Camosy told the Washington Examiner that the Schiavo case was “not the first example, but certainly paved the way for a trajectory where we have continued to say that it isn’t just being human that matters.”
On March 18, 2005, physicians removed the feeding tube of Theresa “Terri” Schiavo, who suffered a traumatic brain injury following cardiac arrest in February 1990. She was medically diagnosed as being in a persistent vegetative state, or PVS, with no hope of recovery. Schiavo died on March 31, 14 days after her feeding tube was removed.
Her story gained media attention through the protracted medical custody battles between Terri’s husband, Michael Schiavo, and her parents and siblings, the Schindlers. The Schindlers, a deeply Catholic family, argued Terri would have wanted to remain alive via feeding tube regardless of her condition.
The family tensions ballooned into a national ordeal, making their way to the U.S. Supreme Court because of interventions from pro-life, anti-abortion politicians at the federal and state level, including then-Florida Gov. Jeb Bush.
“It became a political dispute as well as a medical one, and that was unprecedented,” Kenneth Goodman, a bioethicist at the University of Miami, told the Washington Examiner.
Despite the intense advocacy to keep Terri alive, Camosy said, the outlook for the pro-life cause with respect to end-of-life considerations has only gotten worse in the past 20 years.
“We just have become more consistent in disregarding people like Terri Schiavo as vegetables,” Camosy said.
What happened to Terri Schiavo
Terri, at the age of 26, went into cardiac arrest in her home in St. Petersburg, Florida. She was resuscitated but suffered an anoxic traumatic brain injury, meaning that parts of her brain had died due to lack of oxygen.
In April 1990, two months after the incident, she was diagnosed as being in a persistent vegetative state but continued to receive occupational and physical therapy for the next two years.
Michael Schiavo first petitioned to remove her feeding tube in 1998, which would initiate the process of her death by dehydration and starvation. Terri’s parents and siblings fought this effort legally until they lost in 2005.
Terri’s autopsy, led by Dr. Jon Thogmartin and published in June 2005, found that Terri’s state was consistent with PVS.
“This damage was irreversible,” Thogmartin wrote in his autopsy report. “No amount of therapy or treatment would have regenerated the massive loss of neurons.”
The neuropathology section of Terri’s autopsy indicated that her brain weighed only 615 grams (about 1.35 pounds), less than half the average weight for an adult her age.
But before her feeding tube was removed for the final time in March 2005, those who were permitted by the judge managing the case to see Terri reported that she was responsive to stimuli despite the fact that she could not verbally respond.
Frank Pavone, who at the time was a priest and head of the organization Priests for Life, told the Washington Examiner that he saw Terri multiple times in the months leading up to her death, starting in the fall of 2004.
“When her dad kissed her — he had a mustache — and he would say, ‘Here comes the tickle,’ and it would tickle her and she would laugh,” Pavone said, adding that she attempted to respond to questions and speech multiple times in the times he visited with her.
Pavone, a prolific anti-abortion advocate, was dismissed from the priesthood in November 2022 due to “blasphemous communications on social media” and “persistent disobedience” of diocesan leadership. He has since remained in charge of the Priests for Life organization.
He said his most poignant memory of Terri is on the day she died, with a flower vase filled with water on her bedside table, while she had been cut off from hydration.
“I’m standing there, kneeling there, looking, sitting there, and I just kept looking in one glance at Terri’s face and then the vase of flowers nourished in the water,” Pavone said. “I said, ‘What is this?’ This is the absurdity of the culture of death.”
Life and death philosophy
Because of the media and political attention that the Schiavo case received as it occurred, the name “Terri Schiavo” became synonymous with debates over life and death.
“What happened then was something that’s played out in greater or lesser degree, with greater or lesser urgency and drama in every hospital in the United States of America,” Goodman said. “Namely, you’re somebody who’s permanently lost capacity. To what extent ought we treat this patient aggressively?”
Answering that daunting question hinges on what it means to be human. It’s the same question that plagues debates on abortion but at a different stage in biological development.
“What a lot of people looked at, if we’re just honest with ourselves, they looked at somebody like Terri Schiavo and said that individual is either no longer human or is a human being that doesn’t matter the same as other kinds of human beings,” Camosy said.
Camosy says that, for secular medical ethics, what matters is “humanity plus,” his term for the other characteristics that mean more than the species classification of Homo sapiens.
“So you got to have humanity plus maybe rationality or self-awareness; humanity plus moral capacity; humanity plus memories and the ability to focus on the coherence of one’s ego,” Camosy. said “Your humanity plus something else.”
In stark contrast to “humanity plus,” Goodman said the idea of staying alive without consciousness, what he and other ethicists call vitalism, goes against what it actually means to be human.
“What makes us human, what makes our lives, what makes us different than other creatures, is not that we’re not dead; it’s that we interact with each other,” Goodman said. “We have emotions, we communicate, we have sensations.”
In the early 2000s, Goodman spearheaded the Terri Schiavo Project at the University of Miami Institute of Bioethics and Health Policy, cultivating a detailed timeline of the case as it unfolded.
He later edited a comprehensive volume on the Schiavo case with entries from medical professionals and other bioethicists, published in 2007.
Goodman told the Washington Examiner that nowadays the Schiavo case is referenced all the time by grieving families with loved ones in similar conditions as an example of carrying on medical interventions.
But he said that most people’s request to keep their loved one alive, without sentience, is more an emotional decision than one borne out of theological or rational discernment.
“No one wants to be dead, but when it’s hopeless, what exactly are you asking those doctors and hospitals to do, since you are either unwilling or unable to pay for it?” Goodman said.
Declining care despite scientific progress
Schindler, for the past two decades, has run the Terri Schiavo Life and Hope Network, a nonprofit organization that helps families in similar positions as his advocate medical care for those cases deemed hopeless.
“It seems to me, doing this for 20 years, people like my sister and others that are in mental situations, it’s getting more difficult to provide them treatment that they need and that families want for them,” Schindler said.
Schindler acknowledged that, in his business, he only sees the most egregious cases. But the number of requests for help that Schindler and his team receive has increased over the years, particularly for those whose care for traumatic brain injury is being terminated very quickly after diagnosis.
There has been significant progress, however, in medical diagnoses and treatment for traumatic brain injuries and other stages of unconsciousness.
Schindler said that physicians are pioneering treatment options for certain types of brain injuries, including hyperbaric oxygen therapy, or HBOT. The treatment involves breathing pure oxygen in a pressurized chamber to increase the amount of oxygen in the blood in an effort to reduce brain swelling.
“Back during my sister’s case, they thought that was quack science, quack medicine using HBOT, and it was unapproved,” Schindler said.
Goodman, who teaches in the medical school at the University of Miami but is not a physician, said that scientists are learning more about minimally conscious states and brain activity, if only minimal, that occurs despite the patient being diagnosed as in a persistent vegetative state.
He argues that care should not be withheld from those whose condition can improve, but treatment should not be given to patients simply because it is demanded by a family.
“In ethics, we make a bold-faced distinction between requests and refusals. Just because I want something does not entail that I’m entitled to it,” he said.
Parallel movements
In 2025, the pro-life movement is stronger with respect to the beginning of life than the end.
“Much of the pro-life community is focused on the abortion issue, and there’s really not much energy or resources that are being used to really help these individuals, like the PVS diagnosis,” Schindler said.
Pavone, who is also the president of the National Pro-Life Religious Council, an umbrella group of Christian pro-life advocacy organizations, said it is sometimes difficult to get anti-abortion advocates on the same page as disability or end-of-life advocates on policy issues.
“You get various kinds of disability rights groups, and you’ll get various people who are very, very good about saying people like Terri should not be killed, but they would not be with us on the protection of the unborn,” Pavone said. “That’s why it’s really two parallel movements.”
The politically well-connected anti-abortion wing of the sprawling pro-life movement has arguably grown in strength and policy advocacy capacity in the 20 years since the Schiavo case, culminating in the 2022 overturning of Roe v. Wade.
But Pavone says the same is not true for the anti-assisted suicide advocates.
“We’re improving a little bit when it comes to life at the beginning and the protection of the unborn, but in regard to cases like Terri, I think that this philosophy has taken root where you’re judging the quality of life by how it functions,” Pavone said.
Remembering Terri the person
Terri Schiavo had a vibrant personality and thriving life before her collapse in 1990, long before she became a household name.
Schindler recounted for the Washington Examiner a vignette of how Terri came home one evening shortly after she learned to drive sobbing because she thought she had hit a small animal.
“Knowing Terri’s love for animals, we can understand why she was crying the way she was,” Schindler said.
Their father and a family friend visiting that evening left the house to investigate the scene. Eventually, they came back to tell Terri that she must have been mistaken, and there was no animal in the road.
Terri was relieved, said Schindler, but he thought that his father took too long for there not to have been a problem.
“I was just curious and I said, ‘Dad, what took you guys so long?’” Schindler said. “Dad said, ‘We were burying the cat.’”
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Schindler said his sister used to draw Disney characters, and her drawings will be on display at the 20th anniversary Mass her family will hold in her honor at the end of March.
“She had a wonderful sense of humor,” said Schindler. “She was always kind of self-deprecating. She was just cute with her gullibility. She always laughed. She was very easy to get along with, very personable, beautiful.”
