Terri Schiavo's Legacy: When to Ethically Stop Life Support

Medscape

30-07-2025

This transcript has been edited for clarity.
Hi. I'm Art Caplan. I'm at the Division of Medical Ethics at NYU Grossman School of Medicine in New York City.
Twenty years ago this month, from the time I'm talking with you, in March 2005, a young woman named Terri Schiavo was allowed to die. It was one of the most controversial, and probably the most important, end-of-life-care cases ever to unfold in the United States.
Terri was left permanently unconscious after a heart attack. Her husband [Michael Schiavo], after efforts were made to see if they could revive her and after efforts were made to see if she really was permanently unconscious, basically said she would not want to be in this state.
She was kept alive by artificial nutrition, artificial fluids, and he said she just wouldn't want to be hereunable to think, sense, or feel, implying, "I know her, I have decision-making authority, and I want her feeding tubes and her artificial fluids disconnected. I want her to be allowed to die. That's what she would want." He wasn't saying that's what he would want. He said that's what she would want, acting as her, if you will, guardian or person making a substituted judgment.
Terri's parents and her brother did not agree. They felt that Terri might recover. They also argued that they weren't totally convinced she was completely unable to communicate, think, feel, or hear. They made tapes when they went to visit her that suggested that she wasn't totally unconscious and was somewhat responsive.
They went to court in the state of Florida where Terri was after her heart attack in a long-term care facility and engaged in a legal battle with Michael, the husband, to keep her alive. That fight took over 8 years, I think. It went up and down the Florida court system as to who could make the decision on whether artificial nutrition and fluids could be stopped.
The fight reached 14 Florida courts, up and down their appellate system, then five federal courts, then intervention from the US Congress on the side, I should add, of Terri's parents and siblings. There were people arguing from the floor of Congress, including Congressman David Weldon and Senator Bill Frist [both of whom are physicians], that they didn't think she was in a permanent vegetative state.This was very controversial because they made that diagnosis based on videos, without seeing her.
Ultimately, the Supreme Court was approached. They said they were not going to hear the case, but the last court decision gave authority to the husband. On March 31, 2005, Terri's artificial life support was discontinued and she died.
That case has reverberated throughout American healthcare ever since. It's not just a story of how we got to where we are in terms of having the right to stop care that a person doesn't want. This set the stage for stopping care that some people think is not medical care — food and water — but others argue quite vociferously that it's technology coming through a tube made out of special solutions,not eating pudding off a spoon.
One issue that seems to have been resolved by the Schiavo case is that artificial feeding, artificial life support, and artificial fluids are medical technologies and can be stopped. At the same time, we have had many arguments since about how you adequately diagnose permanent vegetative state.
Some scientists today are arguing that even with what we think is permanent vegetative state, there still may be some consciousness there. I don't believe that was true at all for Terri because on autopsy, her brain had shrunk to the size of a walnut. Her optic nerves had disconnected from her brain. She would not have been able to sense, feel, observe, or respond to any stimuli.
Do we have to make a more precise diagnosis of permanent vegetative state before we get into arguments about what to do next? I do believe also that it's important, if you are dealing with someone who's terminally ill or has a serious illness, to get the discussion going early about who's in charge.
We still have fights between husbands, families, sisters, and cousins coming in about who has veto power or decision-making power. The earlier we can establish who it is that the patient wants to speak for them if they can't, the better.
Reenacting that war that we saw in the courts and Congress over Terriis a lesson that early communication, although it's hard to do, can really save terrible and disturbing emotional battles — not only for the family, but also for the nurses, doctors, and everybody who's involved in treating someone when one of these fights breaks out about stopping food and water, shutting off the ventilator, or stopping dialysis or antibiotics.
Terri has quite a legacy. She left us with the understanding that it is possible legally and ethically to end life support, that someone else can make that decision, and that a [spouse] has more standing than the rest of the family. Given all that, it's still important to engage in early, explicit discussion about who ought to be in charge if the patient can't be.
I'm Art Caplan, at the Division of Medical Ethics at NYU Grossman School of Medicine. Thanks for watching.